Renee's Bump in the Road

Final-E

2010-11-22T10:22:00.000-08:00

.
We met with the oncologist on October 21, 2010 for the 6-month check up and to review the 6-month MRI/mammo results.

Cancer breast:
Decrease in the enhancement at the lumpectomy site. Resolution of small fluid collection at the lumpectomy site. Category 2/benign. Recommendation: Normal follow-up!!! (exclamations were not dictated by the radiologist)

Non-Cancer breast:
No abnormal mass or significant enhancement is seen. Category 1/negative. Recommendation: Normal follow-up.

Moved to having annual mammograms!!

Final-E Finally! The two years of a grey/black “probably benign” cloud hanging over my head is gone.

Did I instantly start doing the happy dance? No. Come on, who do you think is writing this blog? Once a year mammograms? Are you crazy, doc? This is an aggressive cancer! It was the same feeling I had at my last radiation treatment. No one was watching this b*tch closely. It’s the typical “I’m out of treatment, now what do I do?” feeling.

I know I have stepped away from blogging. Why you may ask (or not, but you are here reading, right?) Well, I found that I couldn’t be upbeat and positive all the time with this “probably benign” crap (from here on out known as PB crap) hanging over my head. I tried. I did happy thoughts, yoga breathing, acupuncture, exercise, lost weight (31 pounds thank you very much), talked to God, read His promises and compared my little PB crap to others whose cancer came back or who were living life with Stage IV cancer.

And here’s what I found. It’s OK to go to the ‘dark side’. That’s what I call the times when I feel that I have no control over my life. The key is to just not stay there. I spent too many days at that stay vacation place while trying to hold together my work and home life. Not a good thing.

What I discovered was that if my life was balanced, the stay vacation in the dark side didn’t last very long. And if it did, I spent a lot of energy fighting that demon with taking control of my diet, exercising and getting the right amount of sleep. A key was not to beat myself up for being in the dark side – a challenge for someone who has depression (and anxiety only recently discovered – thank you Sue!) and had other undiagnosed health issues. Another key is to not beat myself up when I wasn’t consistent in this fight.

Here’s something I picked up from somewhere on the Internet:

Survivorship is a continuum with no closure; we face different issues at different times.

With the Final-E!! conclusive diagnoses of severe Excessive Daytime Sleepiness (Idiopathic Hypersomnia) and Fibromyalgia, this blog will now focus on ways to live life while sleepy, in pain and in a brain fog.

If the focus of the blog was my IH/FM health, it would be something like this:

I woke up many times last night because of pain in my [shoulders, hips, knees, feet, blah, blah, blah]. Sleep was not refreshing and I am now [in a brain fog, so sleepy, unstable to drive, blah, blah, blah]. How can I make it to work and function 100%? (can you hear the stress in my tone?) I hope to get out of the house today; will have to wait to see what the body and mind allows me to do, blah, blah, blah, blah.

While I do not recommend going on a dark cloud stay vacation for two years, I am energized to use the knowledge gained to live life with a chronic condition and live life despite a chronic condition.

Blessings,

~Renee

Cognitive - no smart title (yet)

2010-09-13T17:41:00.000-07:00

After our last visit, dear blogging community, my life became sucked up by work, medical tests, waiting for medical test results, stress from waiting for test results and visits to doctors. Let’s see where we left off on our story . . .

I met with the neurologist who was going to do 8 hours of testing. Or so I was told by my primary care physician (PCP). Neuro had me to do some memory tests, but it was not 8 hours of testing. We talked about all my aches, pains and groans, which included, but were not limited to: sweats, swollen neck glands, headache, dry eyes, intestinal issues, restless legs, confusion/memory issues, fatigue and sleep problems. Neurologist’s diagnosis was depression, “can’t be anything related to chemo since that was so long ago and research doesn’t support it”. We talked about quitting my high stress job and doing something else. Referred to psychiatrist to review my antidepressants and see what needed adjusting because of said depression.

In looking back, I realized that my cognitive skills were still a little skewed. I wasn’t functioning at the level I was before cancer; couldn’t multitask or remember things. I found that I had to start making lists to ensure that the multiple facets of my job were done and that nothing fell through the cracks. A great amount of energy was expended on ensuring and remembering. I also found that I couldn’t cook more than one thing at a time; something was always getting burnt. Before cancer, I could cook an entire dinner for 10 people without any problems.

Shrinky dink (psychiatrist) didn’t totally agree with neurologist’s opinion that the memory issues couldn’t be related to chemo. But he upped the dosage of Wellbutrin that I was already on anyway. Shrinky wanted me to take 3 Wellbutrin tablets and he faxed in a refill to my pharmacy. Okay, easy enough and I started on Friday morning taking 3 pills from my PCP’s prescription . . heck, not going to waste the money spent on the drugs. I felt weird and wired. After picking up the new prescription on Saturday, I placed it aside, since I already had an open bottle from my PCP’s prescription. I took 3 pills on Saturday and again on Sunday. I am definitely weird and wired, but now my breathing is a little challenged. So glad I’m not doing this while trying to work!

I sort my prescriptions, supplements and vitamins into pill sorters on Sundays for the following week. Yep, sorters, plural. I opened the new bottle of Wellbutrin and noticed that it was a different size and color from my old bottle. Long story short – my old prescription was 300 mg not 150 mg as I thought. So I was taking 900 mg of Wellbutrin. Poison Control stated that seizures are the number one side effect at this higher dose, so get thyself to the hospital. N O W. Poison Control called the ER while we were enroute and the ER was ready for me. They offered a lovely charcoal beverage and an overnight stay in their guest accommodations, hooked up to monitors, to ensure that I did not have a seizure.

Follow up with rheumatologist resulted in him seeing something on my hip xray and ordering a MRI. The results of the MRI were okay for the hip; however, it showed that I had a cyst on my ovary. Radiologist suggested following up with an ultrasound, which happened the next week.

Fear and worry were tops, with a little more depression thrown in for good measure. Follow up with Shrinky Dink where I tell him I’m still not doing well with the memory and confusion (this is where he adds the Prozac).

Meet with gynecology nurse practitioner for ultrasound results, who also did a pap smear. Haven’t had one of those since my partial hysterectomy in 1996! Results came back with some endometrial cells. What? Endometrial? I don’t have a uterus or cervix; how can it be endometrial? Second pathology opinion, not endometrial but something else (I don’t recall what it was). But to be safe and sure that it’s not cancer, let’s have you do a colposcopy. Yada, yada, blah, blah, blah. That’s all I heard after the word “cancer”.

Follow up with Shrinky Dink, where I tell him I’m still having issues with memory and confusion and have now added another worry about cancer. He noted that despite the higher doses of antidepressants, I was still having memory and confusion issues; ergo, cognitive issues weren’t necessarily caused by depression. I asked, and he agreed, to support my request to work part time. By Thursday, I would be so fatigued that my whole weekends were spent getting rested up for the next week. If fatigue and cognitive issues are rated as a 10 (on a scale of 1-10) while on chemo, then this current fatigue and brain stuff was rated a 5. I work 8 am to 1 p.m. Monday – Thursday (this was the company’s choice on how to meet the doctor’s recommendation of 20 hours per week).

My number one reason for working a reduced schedule was simply this: the freedom from the fear that my company would terminate me due to the time away from work to have all these tests and doctor/counselor/acupuncturist visits to find out what was causing the cognitive issues. Second reason was to address the fatigue so we could have some type of life. Third reason was for some time to work on, well, me! Go to the gym as well as take time to get back to planning and eating healthy. I realized that from the time of the diagnosis in June 2008 until June 2010, my focus was on ensuring that I had my job and that things were cool for Vic.

I am aware that in the grand scheme of the universe that having a cloud of “probably benign” hanging over my head, with fatigue and cognitive issues really aren’t a big deal. I am also aware that things could be worse. But why am I having the cognitive issues?

Stay tuned for Part 2. Time for me to elliptical myself to Hawaii (mentally).

Two Years Ago

2010-08-20T13:13:00.000-07:00

Today marks the 2nd anniversary of the surgery to remove cancer from my breast. While it seems so long ago, it really isn't that long.

I hope to get back to blogging soon. But in the meantime, feel free to email me at goose1972a@gmail.com.

Over and out,

~Renee

In the News

2010-05-09T14:20:00.000-07:00

Last Friday, a reporter for the local newspaper asked if he could interview me for a story about the upcoming Relay for Life (May 14-15). We made arrangements to meet this weekend at a restaurant and we met this morning. I work at City Hall so know Robert from his coverage of City Council committee meetings that I staff. During treatment and afterwards, Robert would inquire about my hair. He had shared that his mother had gone through cancer treatments and when her hair grew back with the baby soft curls, he loved touching it. Whenever we saw each other, he’d ask about my hair. To me, it was a way of saying “How are you?”

Driving to the restaurant this morning, tears started coming. What the heck? I hurriedly put on some positive and uplifting music to sing along with (in key, Cousin Kim), in an attempt to release whatever anxiety or fears that was causing the tears. I didn’t have time to think and process the feelings as I was just 2 minutes from the restaurant. Put your big girl panties on and suck it up! Here’s your chance to tell your story and help other women. Deep breath, big smile in place as we sat down in the booth.

And more tears started. Dagnabbit! I felt comfortable with Robert so explained that I cry when I’m sad, angry, happy, tired, frustrated, etc. Those who know me or have read this blog, know that tears are a part of me.

We talked about how the doctor informed me that the biopsy was cancer. How I told my daughters and their reactions. We talked about the hair loss and the emotions behind that. How I felt the need to reassure everyone that I was going to be okay, so they wouldn’t be fearful or scared. Talked about Vic’s diagnosis and who was going to have surgery first. It was tough – it was reliving a time that was pretty damn scary and out of our control.

We also talked about the positives – with tears of course. How the City employees donated their leave so I could have a full paycheck while in treatment. How the Mayor’s assistant, now my “breast friend”, created a place for me to rest on lunch breaks. My department colleagues wearing pink the day before the first surgery. How Vic was been the best care giver anyone could ever ask for – sitting outside the MRI tube holding my hands. The breast cancer blogging buddies and support system.

After our meeting, we drove down to the stadium/track where the Relay for Life is held for photographs. Robert, if you are reading this, please remember, you need to make me look young, tan, and thin. Thank you very much.

On my lunch hour walks, I go past this track frequently. It brings no emotions when doing so. But as I walked up to the track today, I had a split second of nostalgia and pride. Remembering the feelings of walking the first lap as a survivor and the symbol, to me, that treatment was over. I had won the first round. Remembering Victor walking the 2nd lap for caregivers; pride that he was a caregiver and the sadness that he was a caregiver. The 3rd lap and luminaries for my breast cancer blogging buddies. Pride that we made it through another year despite disappointments that we haven’t received the “no signs of malignancy” report. We’ll get there, eventually.

I hugged the Relay for Life banner that was hung across the cyclone fencing. It was a hug of “Hey! Remember me? I’m still here!” It was also a hug of thanksgiving. Thankful that the doctor’s haven’t written the word “malignant” in their reports. Thankful that Victor is my husband and hasn’t dumped me on the side of the road when I’ve been at my worse. I wouldn’t have blamed him at all if he did! Thankful that I have supportive brothers, sis-in-laws, cousins and daughters. Thankful that there is a network support of breast cancer blogging buddies.

~Renee

Anagram: Crate

2010-05-05T20:10:00.000-07:00

Quick note tonight.

No brain cancer. Yeah!!!!
Next step: Referral to neurologist for lots and lots of testing on May 17th. Some of the symptoms seem to be menopause-type, but I thought I was fully past menopause. Hmmm. . .

Folic acid and Vitamin B12 levels are good. Yeah!

All but one blood test results are back - so far no autoimmune disease. Yeah!

Rheumatologist's Initial diagnosis is psoriatic arthritis. Follow up May 21st.

Here we go again . . .test, wait; test, wait; repeat.

I had a light bulb moment today. Imagine that! For once the brain wasn't too fuzzy. Anyway, it seems that for a month after the 6-month Oncologist follow up, life seems to be in turmoil. Doctors just want to be "safe" or "cautious" and run tests. I appreciate their concern. What I can do though, next time, is control the way that I react.

Peace! Over and out.

~Renee

Probably, maybe, might

2010-04-30T07:29:00.000-07:00

As a child, when I heard my parents’ immediate response with these words to my question, I would generally stomp my feet or huff as I walked away. In my young mind, it meant “no”.

As a parent, I found myself using these same words with my daughters, with the same reaction.

But I also recall begging, pleading, crying, and tantrums when those words were said. And not just from me – sorry my sweet daughters.

It might (oops – from here on noted as {O}) have been better to hear or say, “Tell me more about your request”, “That’s sounds interesting. Let me think about it and I’ll get back with you in an hour”.

Okay, maybe {O} that’s me probably {O} thinking I would have acted more appropriate when my parents had said it. Maybe {O} the internal feelings would have been more positive instead of an immediate negative feeling. I might {O} have not felt blown off, not validated or respected.

These are safe words. The person saying them doesn’t want to offend or hurt the requestor.

In the case of this blog, it’s a doctor not 100% sure and probably {O} not wanting a lawsuit if his professional guesses turns out to be wrong. I can understand that. Does it mean he’s not validating me? Or respecting me? Or blowing me off? No. Simply that more information is needed.

November 2009’s MRI showed a suspicious spot on the left, non-cancerous, breast. It was a “let’s check it again in 6 months” routine. Last week’s MRI results finally said “This site is benign”. Further, his “impression (such a nice clinical word isn’t it?) “No findings worrisome for malignancy”.

Worrisome? Interesting choice of words. So that means that if a report doesn’t state “is benign”, we should worry?

However, oh, we love that word too, right along with “But. . .”.

The right breast, the one that HAD cancer: “Overall there is increased enhancement of the margins of the lumpectomy site, yada, yada, yada. Enhancement continues to increase and this is probably benign. Recommend follow-up MRI in 6 months because of new site of focal enhancement that maybe related to yada, yada, yada”.

I’m probably {O} taking those words out of my vocabulary – maybe {O} when talking with others. But then again, I might {O} not.

I’m off to have a MRI of the brain. No one is questioning if I have a brain or, for that matter, validating if a brain exists. They just want to rule out that nothing is lurking there due to recent symptoms. Laymen’s term: has the cancer passed the blood/brain barrier and moved into the brain. Those who have read my blog or know me, this is claustrophobia at its worst.

Stay tuned to learn about the results from yesterday’s appointment with the Rheumatologist.

Time for me to take Valium and get into the confident, warrior mode to face the MRI beast. Gotta love living through drugs.

Blessings,

~Renee

Here You Come Again

2010-04-20T20:01:00.000-07:00

This song has been in my head since Sunday. Crying-Sunday. Life sucks-Sunday. (read previous blog entry)

The lyrics sort of fit what's coming up this week . . . the dreaded MRI. The tube. The little bitty tube for my big butt. Okay, gone too far. Maybe it's the muscle relaxer I have in me or the acupuncture from earlier today. Whatever. I had to share Dolly's song with you (rewritten just a little).

Here you come again

Just when I'm about to forget all about you
You waltz right in the door
Just like you done before
And wrap the fear 'round your little finger

Here you come again
Just when I'm about to forget all about you
You look onto my calendar
And write down a date and time
And pretty soon I'm wonderin'
How I came to forget you

All you gotta do
Is show M. R. I.
And there go all my defenses
Just leave it up to you
And in a little while
You're messin' up my mind
An' fillin' up my senses

Here you come again
Lookin' to freak me out with no right to
An' shakin' me up so
That all I really know
Is here you come again
An' here I go

All I gotta do
Is remember Joshua 1:9
Be strong and courageous
Do not be terrified
Do not be discouraged
For the Lord your God will be
With you in the tube.

Lots of blood work on Thursday, along with the usual "are you there, Cancer?" bloodwork. Many boxes were checked on the lab slip to rule out any type of autoimmune disease. Believing!

Oncologist on April 29th in the morning and Rheumatologist in the afternoon. What more could a girl want?

xoxox

Renee

Okay

2010-04-18T13:27:00.000-07:00

I'm okay.
Just okay.
Not zippity-do-da-the-sun-is-shinning wonderful.
Each day seems to be a struggle . . . sometimes mental;
sometimes physical;
sometimes spiritual.

My bones ache.
My muscles ache.
My brain is fuzzy.
I'm fatigued.
Each day is not the same.

You (I) tell yourself (myself) that every headache is not brain cancer.
You (I) tell yourself (myself) that the pain in the hips is not bone cancer.
You (I) tell yourself (myself) that you (I) will not cry when talking with the doctor about the pain.
You (I) tell yourself (myself) to go on with life and ignore these things.
Not everything in your (my) world is related to cancer.
This is your (my) new normal. That f-ing comment that you (I) hate. Yep hate; not polite "dislike". But hate.

17 months since chemo ended.
15 months since radiation ended.

I truly thought I would be back to me once the hair grew. That was the measurement, the goal, that all would be well with our (my) world. It's not.

Okay.
I'm alive.
I have a job.
I have a house.
I have a car.
Okay, it could be worse.

MRI this Thursday.
6-month follow up with oncologist the following Thursday.
We (I) will be more than okay if we (I) don't hear the words, "There's a spot that we want to keep an eye on. Probably nothing, but. . . ."

Follow-up appointment with regular doctor to determine if it's just fibromyalgia.

Just sharing some of the things going on in our (my) life.

Hope.
Hoped that it would be an uplifting blog entry. It's not. Oh well. It's okay.

Going outside as the sun is shining. Maybe it'll help get the zippity-do-day back into our (my) world.

Peace

~Renee

Missing You

2010-03-16T13:57:00.000-07:00

I miss you all.

I miss reading and finding out about your lives . . . how you are making it through your treatments and life after treatments.

I miss thinking about you during the day and saying a prayer as you pop into my mind.

I shall return to blogging soon. So much is happening with me on the inside - good stuff. A new way, a better way, of looking at life. Of setting boundaries. Of standing up for myself. Learning to not judge - myself or others. Learning to not be a victim or listen to others talk in victim-mode.

Don Miguel Ruiz . . . . starting to read his book "The Four Agreements".
http://www.miguelruiz.com/

Listening on the iPhone to Gary Van Warmerdam while taking a mid-day walk.
http://www.pathwaytohappiness.com/index.htm

28 pounds gone. Yippee!! 15 more for my first goal. Two sizes smaller.

xoxox

Renee

No!

2010-01-26T15:41:00.000-08:00

No cancer was found in the two biopsies! Hallejuah!

They don't know what it is but will test some more. Have at it, laboratory people. I heard what I needed to hear.

Thank you all for your thoughts and prayers.

Daughter's tumor was benign.

Other daughter can see her children now, no more supervised visits. We didn't get all we wanted, yet, but at least she can see her girls.

We can breathe!

Morphic

2010-01-23T17:14:00.000-08:00

When the lumpectomy breast became red and inflamed a week ago Tuesday, then moved quickly to swollen, hot and painful, my gut said it was Inflammatory Breast Cancer.

Breast surgeon thinks it is either IBC or Postirradiation morphea.

Postirradiation morphea usually affects the breast and may resemble metastatic breast cancer, especially if it initially has an inflammatory stage. I did have an extreme inflammatory stage. Morphea is an autoimmune disease; it is also referred to as a localized scleroderma.

I am scared, but calm. My mantra is, “It is what it is”. Maybe having gone through treatment already with the 2nd most aggressive breast cancer, the emotions are not all over the place. I remain hopeful that it is not IBC.

Yesterday, the surgeon took two skin punch biopsies, then put in a few stitches to close them. These suckers hurt!

If this turns out to be IBC, then back to the oncologist and chemotherapy. If more surgery is required after that, I will have a double mastectomy (my choice). But I want to make sure that the cancer cells respond to chemo first before I agree to any surgery.

If this turns out to be Portirradiation morphea, I will be referred to a rheumatologist.

Please keep us – my 2 daughters and me – in your thoughts and prayers this Tuesday. One goes for surgery for a tumor on her ovary. Our hope and belief is for a non-malignant tumor. The other daughter goes before a judge for the child custody. The skin punch biopsy results should be available on Tuesday.

Instead of singing, “Monday, Monday. Can’t trust that day”, I think I’m changing it to “Tuesday, Tuesday. Can’t trust that day”.

Peace and blessings,

~Renee

Aspirations

2010-01-22T07:02:00.000-08:00

Aspiration

1: a drawing of something in, out, up, or through by or as if by suction.
2: a strong desire to achieve something high or great.

Funny how the word, aspiration, can mean different things. In my case, it means that the "thing" required numbing the breast and then withdrawing fluid from said thing. Fluid was sent to laboratory for three different tests. First test results would be ready within an hour.

Thing shrunk a little but not entirely. From 3" x 1.5" to about 2.75" x 1". Breast surgeon's (BS) scheduler calls. Oncologist wants BS to see me sooner than later, based upon the culture results. Red flag #1. Oncologist returns phone call - not the nurse. Red flag #2. Oncologist leaves voicemail as I didn't hear the beep of call waiting. Oncologist's voice message says thing looks to be a complex cyst and wants BS to look at thing this week; not at BS's first appointment opening on February 5th. Red flag #3.

Internet, friend or foe, gives 14% chance of malignancy and another site says bloody fluid and minimal decrease in size after aspiration is always malignant. Last night, the Internet was foe.

So, I aspire that today's appointment with breast surgeon (2 pm) will result in my strong desire to achieve nothing. As in, the thing is nothing.

Believe with me, please.

~Renee

Sell U What?

2010-01-16T19:32:00.000-08:00

Greetings!

I hope you all had a great Christmas and a peaceful New Year. We had a great time celebrating Christmas at my mom's place in Idaho. My two brothers and their families came up from California; it was nice to spend time with them.

The situation with the daughter continues. We were "allowed" to see the granddaughters one time in December. Their father, though, decided we couldn't be trusted since we helped "hide" the girls from him, stating that we knew he had an order of protection and temporary custody of the girls (6 and 8). So, big azzhole came into the restaurant and sat across the aisle from us. Hardest thing to do - putting on a happy face for the girls, showing them some love and fun, all the while knowing that his ugly mug was 6 feet away.

When he realized he couldn't hear or see me talking to the oldest daughter, he moved to the otherside of his table. It became apparent that he is using intimidation and fear on the girls. Before the 8 year old would respond to general conversation and questions from us, she would look at him first. We could tell she was very guarded on what she said. This has been further confirmed by my daughter. The girls have told her that daddy tells them not to tell my daughter anything or they'll get in trouble.

The criminal charges for domestic violence were dropped by the prosecutor. Oh, I didn't tell you that, did I? Seems azzhole husband told his wife to leave, once again, but stated she couldn't take the girls, again. When she tried to get her car keys and cell phone to leave their residence, he blocked the doorway. She shoved. He balled and clenched his hands; she was scared and slapped him, trying to get past him. Azzhole husband immediately turned around, went outside and called the police. Voila! She's arrested for DV. Yes, if the situation was reversed, he would have been arrested. Too bad he didn't hit her - the mental, emotional and monetary control over her has been 1,000 times worse.

Now to the cancer crap and life after the cancer crap, she says sarcastically.

Reading other women's blogs, I've learned that many deal with aches and pains for several months after chemotherapy ends. This wasn't the case with me. I had no residual physical problems, other than a few whacked out brain cells still affecting my thought process and memory. Sometimes funny; sometimes frustratingly not.

During chemo treatment, I researched alternative treatments to help deal with the nausea and the other problems that come about from chemotherapy. Many women were using acupuncture and I truly wanted to give it a try. I chickened out. If you've read this blog, you know about my fear of needles.

For several months now, I've started having lower back and neck pain. Massage and gentle stretching exercises didn't help; the pain continued to increase. To add to the matter, the "daily constitutional" started backing up. Without Colace or daily oatmeal, my body just wouldn't produce [chuckle]. Those who have been on this journey know what comes next . . . the wake-you-up-in-the-middle-of-the-night dread that the horrible disease has come back. But yet, I hesitated to go to the oncologist. Silly, but intriging (to me) about my hesitation. Glad to say that after six acupuncture treatments, the back pain is gone. Lesson learned: acupuncture really doesn't hurt.

Stepping out of the shower this past Tuesday, I noticed that the lumpectomy breast was extremely red and sore. An hour later, it was very painful, swollen, and hot to the touch. First thought - Inflammatory Breast Cancer. The oncology ARNP that I met with a few hours later stated that breast cancer is not painful and does not come on suddenly (not quite true). She felt it was cellulitis, prescribed antibiotics with ibuprophen, call in two days if it's not better. I call in two days, it's not better, it's starting to itch and I am dang uncomfortable. Can you give the antibiotics one more day? Oh, sure, I can. No problem. I like having this breast the same size as the other one again. Yeah, there's a positive in every situation.

Researching the Internet (our friend and our foe), I found information from the 2000 American Society of Clinical Oncology conference.

Delayed Breast Cellulitis Following Breast Conserving Therapy
for Stage 1 and 2 Breast Carcinoma

What the heck?

I'm happy to say that the swelling, pain, and redness have decreased. If it's not cleared up 100% by Monday, I'll visit the oncology department again.

Hugs and kisses,

Renee

New Man

2009-11-20T21:25:00.000-08:00

I have a new man in my life. His name is Ned. That's short for

No Evidence of Disease

Monday - the mammogram
As the tech was leaving the room after taking a few pictures, I asked that the radiologist return with her to give me the results. I explained that the last time, she returned to the room, she stated that it "was clear". I took that as clear of cancer, yippy, skippy. No; what she meant was the digital films were clear. This time, I wanted to have all the information before leaving the building. The Radiologist came in and said that there was no evidence of cancer. It was clear.

Then why couldn't I yell "yahoo" and dance around the room. I just didn't want to get my hope up until after the MRI on Thursday.

Thursday - the MRI @ 2 p.m.
The MRI went much smoother and easier than last time. Maybe it was the Xanax and Valium I had in my system. :-) It was only about 20 minutes and voila done. We grabbed a bite to eat in the hospital cafeteria, waiting for the 4 p.m. oncologist appointment. Still a little apprehensive until we heard the MRI results from the oncologist as we waited in the exam room. And waited.

I hopped onto the exam table and took a snooze; nice sleepy drugs. And waited. Vic finally went out to the front at 4:45 p.m. and had the oncologist paged. No idea why she took so long.

The MRI radiologist had not entered a report into the computer system, so the Oncologist briefly reviewed the MRI pics. She had stated that she's not trained to read them but went through a few screens and said it looked good. She would call me at work in the morning with the results from the radiologist.

I still could not muster up a lot of joy. Paranoia?

Friday

I really wanted to bring in some goodies to work this morning to celebrate NED with my coworkers. They knew about the MRI. I didn't want to say anything until I had heard from the oncologist, at which time I was going to run out to the store. She was going to call my work with the MRI results. I waited.

I had told a few of my female coworkers when I got into work that I was NED and stated that I was still waiting for a call from the oncologist to confirm the MRI. At noon, I decided to share the info with the men of the department in an email. When talking to the guys about the cancer, it seemed their eyes would travel down to the chest area. Were they trying to figure out which one was fake? Ha, , none of them are fake. A little smaller perhaps from the lumpectomy.

At noon, I checked my home's voice mail to discover a message from the MRI clinic. . . it came in at 10:25 a.m. They found a 5mm spot on the lumpectomy breast and a 4mm spot on the other. I needed an ultrasound to check it out . . . but, hey, didn't they tell you that the MRI picks up everything? It's probably nothing, but we want to be overly cautious, said the sweet MRI tech. Umm, nope, no one said a thing about this. She tried to schedule me for next Tuesday. No friggin' way was I waiting until Tuesday. I asked her to find a clinic associated with their hospital, anywhere in the state, that would do the ultrasound TODAY. She was able to get me into a clinic fairly close to our home at 1 p.m.

My sweet husband said he would grab a bus and meet me at the hospital (he works about an hour north of my job). No, honey, it's nothing. I can do this; you've missed enough time from work, blah, blah, blah. I'm fine.

Ultrasound @ 1 pm

Ultrasound on both sides, with the tech reviewing the MRI films. Oh, I so wanted to be Vic, "don't worry about it until they tell you to worry about it". But I'm me. . . . mind you I wasn't sobbing, but the eyes were leaky. Happy thought, happy thought, think happy thoughts! Where are those darn happy thoughts? Bleh. . couldn't get them.

While the tech could see something, she felt confident the spots weren't cancerous. She stepped out of the room to speak with the radiologist. In hindsight, I should have asked that he come back into the room with her after their consultation. When she returned to the room, she stated that the radiologist agreed that the two areas were clear and that we just have to be over-cautious. I'll have another MRI in 6 months.

Walking out into the lobby I saw my hubby. Guess he didn't listen to me. :-) And I'm so glad he didn't.

I called the Oncologist to find out for sure what the ultrasound showed and did it jive with what the tech had told me. I waited. Those of you who have been on this journey know that we do not wait very well. About 5 p.m. the oncology nurse called and said the ultrasound was clear. However, the MRI would be repeated in 6 months. I suggested that we do it in 3 months given the aggressiveness of the cancer. Nurse indicated that the doctor does 3 month checks on certain cases, and where indicated, but would do mine every 6 months. I have news for the nurse - I'll be pushing for a check every 3 months until the mammo, MRI and ultrasound all come back with the same conclusion.

Lesson learned: expect an ultrasound after each MRI.

Regarding the child custody issue - it isn't good. I don't have the whole story from my daughter's hearing today. Just know that our hearts are heavy . . . trying our best to not have them break.

This will be my last entry for a few months. If you want to stay connected, please feel free to click on the Facebook link and add me as a friend. Sister Warriors - I will keep reading your blogs and cheering you on!

Much love and thankfulness for your support,

Renee

Hair & Boob Pics

2009-11-15T19:14:00.001-08:00

Below - November 2008 . . . .about the 3rd chemo

Below - November 2009 . . . .11 months post chemo

Hoping that the curls stay. Never thought I'd hear myself saying this!

Well, as far as the boob pics go . . . .Gotcha

Tomorrow is a mammogram and blood work. Last blood work was good, mammogram had some architectural distortion.

Thursday, November 19th is the MRI. We went to the hospital yesterday to visit the MRI machine. Who in their right mind visits MRI machines? Me.

The anxiety has lessened somewhat since talking to the MRI tech and seeing the machine. Xanax to get through the days leading up to the MRI and Valium an hour before the MRI . . . . life through chemistry, ain't it grand.

For a number of years, fear of the dentist would send me to this same high level of anxiety. I've been able to work through the fear with two great dentists and hygenists (and a Xanax once in a while). Who knows, maybe I'll get to this same place with MRIs . . . . dentists and MRIs every six months, hmmmm.

We are still working on the daughter and granddaughters situation. I thank you for your words of wisdom, ladies. This has been 10 times worse than the breast cancer diagnosis. I could fight and do something about the cancer, but I can't do anything about this situation.

Talk to you on Thursday.

xoxo

Renee

October is . . . .

2009-11-07T10:57:00.001-08:00

I haven't posted pics of the new hair do because I just can't get it quite right. But my hair was always like that before cancer. A week and a few days after a hair cut would find me fussing, and fussing some more, just to get the hair to go the way I wanted it to go. Too many cowlicks and growth patterns for one head, I do believe. I expect pics to be up soon though.

It has been an extremely difficult week. I won't go into details here, but just say that we need your prayers. My daughter has temporarily lost custody of her girls, ages 6 and 8. This is wrong. Nothing she did warranted this type of treatment by her husband and the legal system. Because he has friends in blue (police) and is part of the legal system, he has used both to leverage his child custody issue. And, now he has 100% control of my daughter like he has wanted. He is a domestic abuser. Flat out, I'll call it what it is.

It has been frustrating to watch my daughter go through this. We feel she should be doing much more to remedy the situation and take control of her life. It may be just too hard for her to see the truth about their relationship. It may be too hard for her to break free of his control. She wants to remain married to him. Classic domestic abuse victim. We have to let her make her choices; this is tough. As her parents and grandparents of two beautiful little girls, we want to "make it all better".

As a grandparent, we have no rights to visitation. We have asked, but he stated he has fears and concerns about letting us see the girls. What B.S. is that? Oh, yeah, the same B.S. that he put on the protection order that he was in fear for his and his children's safety from my daughter.

Did you know that October is Domestic Violence Awareness Month?

What is Domestic Violence? Domestic violence can be defined as a pattern of abusive behavior in any relationship that is used by one partner to gain or maintain power and control over another intimate partner. Domestic violence can be physical, sexual, emotional, economic, or psychological actions or threats of actions that influence another person. This includes any behaviors that intimidate, manipulate, humiliate, isolate, frighten, terrorize, coerce, threaten, blame, hurt, injure, or wound someone.

Domestic abuse not only affects those who are abused, but also has a substantial effect on family members. Children, who grow up witnessing domestic violence, are among those seriously affected by this crime. Frequent exposure not only predisposes children to numerous social and physical problems, but also teaches them that violence is a normal way of life - therefore, increasing their risk of becoming society's next generation of victims and abusers.

Abuse usually gets worse over time. Yep, that has happened . . . . six years of him getting worse have led to this place.

Hey Mr. Husband, we have our fears and concerns as well. Fear that you will do more physical and psychological damage to the three girls in your life that you love so much. Because you know you will - unless you get help.

You've met your match, Mr. Husband. No wait. You've met someone better than you, Mr. Husband - me!

~Renee

Hair Cut

2009-10-28T19:46:00.001-07:00

My first real haircut in over a year! Something so insignificant and routine in my past life, such as a hair cut, now gives me great joy. The length was 4" and the hairdresser said it is much thicker than "normal". Ahh, there goes that word again, "normal". The hair is still curly and I'm hoping it doesn't go back to straight!

We have moved the MRI and mammogram from December 17th to November 19th. I am glad. I need to have this cloud of the unknown that has been hanging over my head gone. G.O.N.E.! Not saying it's going to be cancer, but if it is, this will give us time to increase our medical flexible spending account for 2010 expenditures. Sad that we have to think this way, but we also want to be smart with the finances.

Besides, getting the MRI/mammo results on December 17th then flying to my mom's the next day for Christmas, wouldn't have been the best if the news was bad. Reminder - we aren't thinking it's going to be bad, but . . . .

It's been tough, quite honestly, not to continuously think about cancer. I truly believe that if we had received an "all clear" at the June mammo, I wouldn't still feel stuck in the land of cancer. I so want to move on . . . Worrying about the issue isn't going to make it better or go away. I know this. It's a challenge to give this all to God and leave it there.

Going back and reading where we were a year ago serves as a reminder that tho we went through alot, we came out that much stronger. I am so lucky to have a husband who has supported me 100% through this journey and continues to support. While he can't understand how my worry-brain works, his hugs just make it all better. I am thankful.

~Renee

Another Angel

2009-10-15T11:28:00.001-07:00

I have been writing a new blog entry - in my head - for several weeks now. Soon, I will actually get it onto the blog!

But I wanted to share with you the spirit of a wonderful young lady who also went through a cancer diagnosis and treatment - Amber Chase. Her cancer is different from mine (Triple Negative) and is the one that, to me, is the hardest one to have diagnosed. It is called Inflammatory Breast Cancer. Many ladies are misdiagnosed for months and years - until it is too late and they are diagnosed with Stage 4 cancer.

When you go to Amber's blog, please read up on Inflammatory Breast Cancer. And, more importantly, share this information with your daughters, nieces, and granddaughters.

Here is a link to one of Amber's blog entries. I encourage all to really read the last paragraph.
http://amberchase.weebly.com/1/post/2009/03/i-am-now-past-my-expiration-date.html

May this note find you living to your fullest.

xoxox

Renee

Where Did The Time Go

2009-09-17T20:34:00.000-07:00

Wow! Almost a month since I last wrote on the blog. I knew I was going to start having longer periods of time between writings, but a month? Oh well.

Vic and I had a great Labor Day weekend. We made it a four-day weekend, which was very much needed. We went over to Ocean Shores for just one night, but as usual, just seeing, smelling and hearing the ocean does wonders for me.

Work life has been too busy and too stressful. Along with keeping my eye to December for clear scans, December is when the multiple evening meeetings will end. Last Wednesday, I didn't leave work until 10 pm. . .was there at 9 am! That's too long of a day for me. I enjoy my evenings at home.

I turned 55 (gasp) this week! We had a great celebratory dinner with the girls, their husbands and the grandkids last Saturday. The 15 year old grandson, who has his driver's permit, drove Miss Daisy home from dinner. Yes, I was sitting in the back of the PT waving as we drove away.

Time this past week has been consumed with finding recipes and planning meals. I forgot how much time it takes to plan to eat healthy! I started attending Weight Watchers at Work program. The weigh-ins and meeting is held during the lunch hour so no excuses of being too tired to attend a meeting in the evening or too busy on the weekend. Tomorrow is weigh-in, so I am keeping my fingers crossed that I lost at least 1/2 pound! :-) Weight Watchers has a great on-line tool where you can build a recipe from your favorite recipes to see how to make it healthier and how many points a serving would be. I highly recommend the program, even if you aren't overweight. It's all about making health choices.

This weekend promises to be a fantastic one! Saturday is a facial and a massage. Sunday - attending the play Wicked.

I pray that you are making the best of today! Remember . . . it can be worse!

Many blessings

~Renee

One Year Survivor

2009-08-20T08:23:00.000-07:00

Today marks the one year anniversary of survivorship.

Some count the day from diagnosis,

but I have chosen the date from removal of the tumor.

If I stop to think about all that has happened in the past year - good and bad - I believe I would be in a puddle of tears and also amazed. Amazed that we came out of the journey stronger in our marital relationship. Amazed that the treatment wasn't too bad. Yeah, that's hindsight talking. Maybe I should go back to the beginning of this blog and re-read what I was feeling and thinking during chemo!

From Wendy Harpham on Health Survivorship

Healthy Survivorship is not about what happens to you, but what you do with what happens to you. Healthy Survivors recognize and grieve their losses. And while they are grieving, they make the effort to look for opportunities to do those things that can be done even better than before because of what they've lost.

I realize that I the need to acknowledge and grieve my loss. I've been stuck at that point in the healing process. Yet, I feel that I am in still in this blasted process until I get the clear scans in December. I'll work on it either way.

~Renee

California Dreamin'

2009-08-16T20:15:00.001-07:00

Super busy at work - too much work and not enough people. What were they thinking laying off two people on our admin team? One of the remaining team members reads their book at their desk when they should be working. That leaves three of us busting out azzes to just keep our heads above the water. It's not fair. But life isn't fair either. What goes around, comes around. I'm such a believer in that.

Have had many late night meetings and will have many more through November. I'm not happy about it as they all fall on me. See above - someone in their stupidity cut two support positions. What were they thinking? lol I refuse to walk on water or even try to walk on water. I gave that up years ago when I decided trying to be perfect and a people pleaser was killing me.

Vic went to California last Wednesday and came home today. I am so glad he is back! I get nauseous having to give the cat his twice daily insulin injections. At least I don't cry any more! Yippee, making progress. I missed the guy . . my friend, my love.

Health continues to be fine. I feel like my brain is coming back really well. I can multitask and don't need as many reminders, ticklers and lists upon lists to function at work. I feel like me again and I'm very happy about it. Hair is growing and is still curly! The curl is loosening somewhat, but it's not my normal straight. I'm loving it tho.

The December MRI and mammogram and "distorted architecture" still sits in the back of the mind. I'm telling myself that I can make it another 3 months . . . meetings will be done, MRI and mammogram will be done. Family from California will be here the day after I receive the MRI results. I am sooooooo believing for a clear scan!

Sending hugs to my breast cancer sisters going through treatment. And high fiving those who have completed.

~Renee

Thought

2009-08-04T10:06:00.000-07:00

Only through caring

are we truly attached

to each other

Borrowed from someone else . .

Soy, Estrogen, Hot Flashes

2009-07-29T19:26:00.001-07:00

Finally heard from the oncology nurse regarding taking low dose Premarin for my heat waves. Even though my tumor was not fueled by estrogen (ER negative), the Oncologist does not recommend any type of systemic estrogen. The oncologist would approve Estring, stating that a little estrogen would pass into the system from the vagina.

I asked about using over the counter Estroven. The nurse couldn't find on the internet the mg of phytoestrogens that are in Estroven and suggested that I speak with the pharmacist. Nurse Leslie said it was okay to consume soy-based foods, such as tofu, a few times a week, but not to consume soy supplements. After doing a little research, I now read that flax seeds aren't the best. But earlier research indicated that women should drink green tea and sprinkle flax seed on yogurt or salads, etc.

After disconnecting the call with the nurse, I was immediately mad and sad. I wanted to sit down and just cry. My first thought was, "Damn this cancer! Why does it continue to wreck havoc!?" I'm not sure why the emotions have been high these past few weeks. I find myself crying when driviing home from work. Soon I hope to have the light bulb moment that will shine on what is bothering me.

It's over 100 degrees in the Seattle area and it is miserable. Thank goodness for Ambien! We are taking a cold shower before bed, putting a wrapped ice pack on our bodies, laying spread-eagle in bed with a fan blowing . . . . waiting for that Ambien to kick in.

At least with this heat, I can't blame the sweating on hot flashes!!

~Renee

Miracle Baby

2009-07-26T19:02:00.000-07:00

Please join me in prayer and well wishes for a successful pregnancy for Kim (Batty) and her husband Peter. Kim has been fighting Stage IV breast cancer since 2005.

Read her story here: Batty's blog

Energy

2009-07-25T20:35:00.001-07:00

You only make a decision once;

thereafter you just manage it daily.

Happy to report that the fractured left radial head is improving!

I had serious doubts on the orthopedist wisdom when he said that it was in my best interest to keep moving my arm and hand – increase the range of motion (ROM). It hurt! Stinking hurt, 24/7. Pain pills just took the edge off in order to go to sleep.

Another frustrating point with this whole thing is dealing with work and HR. Sorry to those peeps who may be in the HR field and reading this. Look at it from my eyes. I have an arm that is in a sling. I have a hand that can barely hold 2 pieces of paper. Yet you want me to have my very expensive orthopedist spell out what exactly is “light typing”. Let ME tell you what light typing means. Heck, I’m the expert in this area - been in the this field since 1972 - and it’s my frigging arm/hand that’s hurting! I’ll tell you what I can do.

There were meetings that needed minutes taken and transcribed. There were letters and other documents that needed to be keyboarded or formatted. Wouldn’t you think that someone other than me needed to have their hands on the keyboard? Bless my supervisors heart for being between a rock and a hard place having lost three of seven positions during the recent layoffs. She has been trying to take over the extra projects while doing her own. I realize this. I appreciate this. And I didn’t fall off my bike on purpose. It’s just been a frustrating two weeks for me. Once again, I am impaired because of something beyond my control, and it is impacting every facet of my life. Impacting Vic’s life again. You try putting on socks or underwear with one hand. :-)

I have to wait another 4 weeks to allow the arm/bone to heal. If the pain in the wrist and the numb fingers continue, the orthopedist will then do a nerve damage study. But I’m glad that I can keyboard without too much pain, hold things with my left hand and drive (almost) safely.

I truly didn’t mean for this post to be whiney and cranky. Just wanted to report on how life our life is improving after breast cancer treatment and fractured radials. Oh well.

I am continuing to take 2,000 units of Wisconsin Ginseng that I took as part of the medical research study. It is truly helping with the energy! I take 1,000 units with breakfast and another 1,000 units at lunch. I was told not to take it after 1 p.m. as it may give me too much energy and may impact my sleep. This hasn’t really been the case.

I had a very minute hair trim on Wednesday. Some sections of the hair were too long and cork-screwing . . .sort of like Princess Leia from Star Wars. The hairdresser wanted to have some fun trying to straighten out the curls into a “style”. I let her. Figured if I didn’t like it, I could always put a little water on the hair and watch it curl back into place. It was a cute style. While the hair wasn’t exactly straight, it wasn’t poodle dog-like. The hair measures about 2.5” now. It seems the growth has slowed down and I’m thinking it may be due to not using Nioxin every day and not taking the mega-doses of vitamins and supplements. I had stopped the supplements, believing they were the cause of increased facial hair. But they helped the eyebrows grow!!

Other chemo/radiation related issues that continue are funky toe nails and dry eyes. I’m blaming the dry skin and heat waves on menopause, though I thought I was post-menopausal when I started treatment, so really not sure what this is all about! I spoke with the oncology nurse on Friday about taking a low dose estrogen (my internist suggested it IF the oncologist approved). The nurse thought the Oncologist wouldn’t approve, but would get back with me on Monday. Since my cancer was not fueled by hormones, I thought it would be semi-safe. But again, it could increase my risk of having hormone-fueled cancer. Will let you know what the answer is.

Finger nails are doing great, no bone pain and cognitive/memory issues are almost back to normal. The radiated skin still looks “suntanned” – in my case sunburned since I don’t tan.

One thing I do need to let go is my disappointment and hurt that local people who knew about Vic and I didn’t come through with physical support for the things that we couldn’t do. My mother lives 5 hours away and has never visited us during this past year. She is able to travel, in fact, has made one or two trips to California.

It’s so easy to see the negatives and not the positives, isn’t it? The energy spent on the negatives is wasted energy.

I am so thankful for my mom's prayers, the physical support and love from our daughters (including adopted daughter Laura from Eastern Washington), the support and prayers from my California family and friends, co-workers support and donated hours, and those here in cyber land. So I’ll take that wasted energy and turn it into thankfulness for you that did support!

Despite the above crankiness, I’m pleased that things are going so well after chemo and radiation. It’s still hard to believe that it’s been almost a year since the surgeries for Vic and me.

Peace,

~Renee

Splish Splash

2009-07-12T17:23:00.000-07:00

Splish Splash I Was Taking a Bath

I used to love taking long scented bubble baths with scented candles all around the room. Me - in the tub with my cigarettes, iced cold Pepsi and a good book. Hours could be spent this way. Awww, can you hear the sigh of bliss?

I still like my baths, don't drink Pepsi or smoke any longer, but the lovely scented stuff has gone. I'm now allergic to everything. It's been 8 days since I've had a bath and was desperate to have one today . No, I didn't say bathe, bath. I've had showers, silly.

I decided that the pain in the arm was less and I needed to take a long, relaxing bath. Vic was out truck shopping, so it was a perfect time to have some peace and quiet to read Fern Michael's Final Justice.

Putting the hands on the side of the tub to lower myself in should have been the first clue that this wasn't a smart idea after all. I didn't gently lower myself into the water. Rather, kerplunked my big azz into the tub since the pain in the left wrist shot up my arm. Okay, breathe. Yes, breathe. I start laughing. Here I am in the tub, with no phone nearby and not really sure when Vic will be home! Oh well, might as well continue with the plan . . .read while soaking in warm, relaxing water.

An hour goes by, I've re-warmed the cold water in the tub a few times. Finally, Vic comes home. I don't really want to tell him the predicament I've placed myself in. Heaven knows how many of these "situations" this boy has had to get me out of this past year. Let's give him a break!

I grab the towel and strategically place it so the right arm/hand and feet do not slip on the slippery tub. Not working. I have to call for Vic's help. I won't go into all the detail, but let me say that I had visions of the bathroom's outside wall being removed and a fork lift maneuvering it's way to pick me up out of the tub. Ewww, it wasn't a pretty thought either.

Our life continues despite tumors, cancers and broken radial heads. But Vic still does that weird shaking of the head after these situations. Maybe he needs to see a neurologist for that.

xoxox

~Renee

Radial

2009-07-07T19:41:00.001-07:00

Yep, it's broken. I was hoping it was just tendon damage.

It's a radial head fracture. They can't cast it. I am to use a sling when needed and to start range of motion exercises very soon, like now. Doc said it would take 2 weeks to get the ROM of just bending the elbow. About 4-6 weeks for the wrist.

I am cleared to go back to work with no restrictions. I'm testing my typing now on this blog entry; it hurts. It hurts big time. My fingers are swollen and the elbow area is very swollen. And I'm released to go to work to type 90% of the day?

Anyone have any experience with a radial head fracture? Is this standard procedure?

Bumpy Road

2009-07-06T18:41:00.000-07:00

Vic and I had a wonderful time at the ocean. Good food, great drinks, awesome weather and ocean view from the living room & bedroom. Need to figure out how to win $1 million so we can buy a condo on the beach.

July 4th weekend was great as well. Life is going extremely well. Found out that I was on the Wisconsin Ginseng. Explains why the fatigue lessened so quickly. Yeah!!

New adventures on Renee's Bump in the Road. Literally . . . a BUMP on the ROAD. I fell off my bike ala Artie Johnson style from Laugh In (1970s). Landed on my left arm/elbow. Broke the radial head. I have a partial cast, keeping my arm at a 90 degree angle, and a sling. I see the orthopedist tomorrow morning.

This is me going to work this morning. I only stayed an hour since I didn't have a medical release. Sigh. Here we go again on not enough leave hours to cover this and have any time for future vacation.

More tomorrow! I can type with one hand...and it isn't fun.

xoxo

Bumpectomy

2009-06-28T07:45:00.000-07:00

Happy one year anniversary to me! Happy one year anniversary to Vic! Happy one year anniversary to our new normal! [groan]

What a bumpy ride this year has been. No pun in intended. You know. . Bump, Lump. Lump gets you lumpectomy. So if you have a bump, do you get a bumpectomy?

It seems a lifetime rather than one year since diagnosis. Much has changed, but most things have remained the same.

Vic and I are leaving today for a 3 days at the ocean. Rejuvenation. Celebration.

A couple of pics of the hair growth. Nothing straightens it out and makes it spikey. Nothing. I'm happy to have it - that bald look isn't comfortable.

xoxox

Distorted

2009-06-18T20:22:00.000-07:00

Quick update on mammogram:

There is "architectural distortion" with no microcalcification per se. The breast radiologist's reports indicates that the mammogram does look different from the 2008 mammogram and believes it is from the lumpectomy. The distortion is about where the surgical scar is, so that makes sense. The oncologist stated that they are being conservative by asking for a unilateral mammogram in six months. . . just to confirm that the change in the breast is from surgery and not from anything else. About 90% of the time, the architectural distortion is from surgery, and particularly at the lumpectomy site.

So in six months, I'll have a MRI and mammogram. Until then, I'll just live my life distortedly (no, that word does't exist in wiktionary.org). And very happily distortedly.

Be at peace my friends,

~Renee

Okay

2009-06-17T20:20:00.001-07:00

So, when is okay really okay? That ponderable was with me last night and all of today.

Yesterday was my first mammogram since diagnosis. I didn't realize how uptight I was until the tech said several times, "Relax your shoulder". I did my best to do positive speak to the worries and thought I WAS relaxed.

I think I had at least 2 and maybe 3 compressions on the non-cancer breast; at least 4 or maybe 6 on the cancer breast (or former cancer breast). Not sure the exact amount -- I was too uptight! :-)

Before the tech left to review the pics with the radiologist, she said don't be concerned if we tell you that we'll see you in six months. I appreciated the warning, but also told her that every 3-4 months, someone or something would be looking at that breast. So she left the room to confer with the radiologist.

A few minutes later, she stepped back into the room and said it was "okay" and that I could go have a seat in lobby to wait for the blood draw. I took it to mean "the films are okay and you have no cancer". Denial is such a great thing, isn't it!? In talking with my sweet husband last night about my day, I told him that it was "okay". I know he didn't mean to plant a negative seed when he said, "Okay just means okay - they don't need anymore pictures".

Update on the updates . . . deep breath and a big sigh; yes, this will end someday. I've been having pain in my left big toe but couldn't find the source. I discovered that the nail has a horizontal crack about 2/3 from the top. There is a fair amount of white on the toe nail - similar to how the fingernails looked when they were lifting. I just never put the two together. pain = chemo nail.

Vic and I meet with the oncologist tomorrow afternoon. I'm hoping that the Vitamin D levels have risen significantly. I've been taking a 50,000 IUs pill once a week and 4,000 the other 6 days.

We will also meet with the geneticist and the research coordinator for the neuropathy ointment. It will be interesting to find out if I did have the real thing! Not sure why we need to meet with the geneticist, but kind of glad that we are. I'd like to know if my BRCA gene variant has shown in anyone else's testing.

More news tomorrow! Okay?

xoxox

~Renee

Updates

2009-06-07T11:44:00.000-07:00

"That" Mammogram

361 days ago

First Surgery
301 days or 43 weeks ago

Last Chemo
185 days or 26 weeks ago

Last Radiation
126 Days or 18 weeks ago

Working 1.5 hours in the yard yesterday was amazing. I'm paying for it today with some tightness on one side and a killer of a headache. I don't really care about the pain - just excited that I had stamina for that long. Just a few months ago, it would have been 10 minutes.

The fingernails never did fall off. After they started lifting, I kept them filed very close to the skin which helped. Wearing bandages on the nails while keyboarding also helped. Currently, one nail is about 1/3 of the all white dead stuff; the others about 1/4. Just a few months ago, the nails were two-thirds all white.

Toe neuropathy is pretty much gone. I have days where they do burn, but it usually follows alot of walking in non-supportive shoes or attempting to wear heels at work. My body hasn't done high heeled shoes ever since I feel down a few cement stairs - face first - in 1990. Ankles were mangled.

Call me Poodle. The nape area is 2 inches, extremely curly, so much that no product will keep it straight . .or slightly straight. The nape hair looks to be 1/2 inch in length - it's that tight of a curl. My hair has been straight all my life, well, other than those ugly perms in the 1980s and 1990s. I went to my hairdresser a week ago to see if she had a magic potion to help style the hair. I walk into the salon, she greets with me with "Oh My Gawd!" and starts laughing. Say what? She was shocked to see the curls and waves, she couldn't help herself from laughing. Heck, I laugh every morning!

Eyelashes have lost their length again. I'm back to the short stubbies....so short that it isn't worth putting mascara on.

Port incision has healed nicely and no problems with it. Hallelujah! I am so glad that thing is G.O.N.E.

June 16th is the next blood draw and first mammogram since diagnosis. I will ask the oncologist about markers and all the new research on treatment for TNBC on June 18th.

Hope you all have a great week!

~Renee

More Than Negative

2009-05-31T20:09:00.000-07:00

Drifting off to sleep at night, so many thoughts flood in, some being what I would consider good to share on this blog. In the morning, those thoughts are gone. Please don't tell me to keep paper and pencil next to the bed to jot down the info. That would require turning on the light, re-engaging the brain which will wake me up! Falling to sleep has always been a challenge for me. My brain is too active day and night . . . alot too active.

Some of you may know the mantra, or at least part of the mantra: If only I was younger,or If I was thinner. . . or I wish my [insert body part] was different. For you men (I’m guessing here): If only my [blank] was bigger/smaller, or If only I had hair, I'd be, , ,. Woulda, coulda, shouda.

Quite a few issues occurred this week that have set off these negative thoughts. One can handle a negative thought. I can do that. I can get the Doris Day, Que sera, sera song going with the best of them. But when many issues and many negative thoughts pile up on me, I don’t do well. Raise your hand if you do. Please.

I have no idea where I’m going with this, but hang on. Maybe we’ll circle back around.

I’m sick of self – myself. Self, self, self. I’m tired of people noticing the length of my hair. I AM more than my hair. I just looked up “self” on Wiktionary.org and found this:

Noun: An individual person as the object of his own reflective consciousness.

Reflective. Hmmmm. Yeah, been doing that this week. Wondering why I think and feel the way I do. What makes me different from other people? Am I really different? Don’t we all have some insecurity? Fears?

Fears? Oh my. Yeah. Fears that this damn cancer will come back. I hate sneaky people. I hate sneaky cancer. I hate fear. Fear takes away the ability to live your life in the here and now. Fear robs you of looking forward, outward.

FEAR
Noun: A strong, uncontrollable, unpleasant emotion caused by actual or perceived danger or threat.

In the reflection of this week, I tried to find a metaphor for cancer. While in treatment, I had a purpose, a fight, a battle, a journey. Out of treatment and getting ready for the one year boob squeeze (mammogram), where am I? I need metaphors to get over big issues and negative thoughts. Like the time my doctor introduced the idea of anti-depressants 20 years ago. I didn’t want to take something just to feel normal. And this wonderful doctor said,

Doc: Do you have allergies?
Me: Well of course I do. That’s why I’m here every spring.
Doc: Do the allergies make you not normal?
Me: Okay, doc, where are we going with this weird conversation? No, the allergies don’t make me not normal. . I just have them. A lot of people do!
Doc: You just have them, hmmmm.
Me. Getting ready to roll the eyes. Yeah? So?
Doc: You have a chemical imbalance that causes depression. Just like you need anti-histamines for the allergies, you need anti-depressants for the depression.
Me: Light bulb!

METAPHOR
Noun: The use of a word or phrase to refer to something that it isn't, invoking a direct similarity between the word or phrase used and the thing described.

And my metaphor for cancer is tooth decay. I know there is decay somewhere in my teeth. It’s inevitable. It may not show up at my dental appointment this coming Friday. It may not show up at the one 6 months from now. I eat sweets, I don’t brush my teeth 3 times a day and I don’t floss twice a day. But do I worry about the tooth decay? Is our life all about tooth decay? No and no.

My apologies to anyone reading this blog that may be dealing with Stage IV cancer or a more life-threatening cancer than my Stage 1 Grade 3 TNBC. My intent is not to downplay the seriousness of cancer or offend.

Worrying and having fear about the cancer returning robs me of my laughter and my joy. It robs me of living in the present. Worrying about the future is powerless. I like what this person has to say about worry

Worry is proportional to our sense of security. When life is going as planned and we feel safe in our life routines, then worries subside. Likewise, worry increases when we feel threatened, insecure or are overly focused on and committed to some result.

So, I’m going to live my life with possible tooth decay. But I am not going to BE tooth decay. If and when the tooth decay is discovered, I will deal with it then. And I'll continue to speak to the negative thoughts and do my best to turn them around to positive thoughts.

Sending you many hugs, I remain . . .

~Renee

Walking Port

2009-05-17T15:43:00.000-07:00

Many months ago, just the thought of getting the port removed sent me to anxiety city for hours. The weeks leading up "the" appointment on Friday, I felt rather calm. I did end up taking two 5 mg Valium - one before driving in and one when I was at the office waiting, and waiting, and waiting. No, I wasn't driving, Vic was.

Before the nurses accessed the port during chemo, they would inject lidocaine into the area around the port. The lidocaine injections stung, but were tolerable. Not sure what happened with the port removal, but each injection of lidocaine hurt like a big dog. The "I've never taken out a port before" resident, did the first round of injections. After the surgeon did the "do you feel this" poking of the skin to see if I was numb - and I wasn't - the surgeon did another round of injection. That was probably the worse for me.

I had my iPod blasting Josh Groban during the procedure and did my best to focus on his beautiful voice. However, the surgeon had other plans . . .she wanted to make sure I could hear her. Wait, I don't WANT to hear you or your knife or you talking to the resident. The main instruction was to hold still and to hold my breath when she told me to do so. I'm not sure why and I didn't ask. I believe I held the breath while the tubing that was in the vein was being removed.

There was a bunch of tugging, which I did not like. Was it enough to say I wish I had twilight anesthesia for the procedure? No, not really; that would have required an IV which we just don't do well. My veins close up as soon as they hear "IV". Trust me, I know this to be true. I wondered, tho, could they give Versed through a very fine needle directly into the vein. . . just a little bit of Versed? I love Versed!

Here is a picture of the port before removal.

I have a picture of the port after it's removal. It does have some red stuff on it, so if you are of a squeamish nature, don't, as in DO NOT, click on this link . The port itself is about an inch long, so I'm estimating that the tubing was about 8 inches.

Having low tolerance for pain, I did take Vic's Oxycodones Friday and Saturday. Sunday was Advil and today nothing. The incision itself doesn't hurt today, just the muscle in my neck. I am just glad that it is out!

Relay for Life was a very moving experience. For the cancer survivors reading this, if you have an opportunity to participate in the Relay or some other type of fundraising event, please do!

Here is a lady that spoke during the opening ceremonies. Please take a moment to read her great story!!

Each survivor wore a purple shirt and words can't begin to describe what it was like to watch this sea of purple walk the first lap. Caregivers walked the second lap and both survivor & caregivers walked the third. Participants and supporters surrounded the track, clapping as we walked by. Yes, I did cry, but I also hooted and hollered back at them. The laps truly symbolized a race, a journey, that we all had been on.

I had just a few minutes to create two luminary bags. My apologies for not getting everyone's name onto one of them. But every one of the Journey Supporters and fellow cancer previvors/survivors were in my thoughts!

One of the volunteers put the luminaries out for us since we were short on time. But! As Vic and I walked around the track, we came upon them! It was so extraordinary that I glanced down at the right moment to see the names.

There are more pictures of the event on my Facebook. If you would like to email me your ID (see "Complete Profile" for the link), I will add you to my friends list on Facebook.

xoxoxo

~Renee

Port and Walking

2009-05-15T08:52:00.000-07:00

Well, today is THE day! It's two significant events in our lives.

The chemo PowerPort comes out in 2 hours. Then this evening, Relay for Life. Where I will proudly (and probably bawling) walk the Survivor lap. It will be a joy to watch Vic walk the Caretaker lap and he should lead the pack since he was the best one ever!

It's not too late to make a donation. If you haven't already donated, won't you help me reach my financial goal by donating $10 . . . just $10. Come on, you can do it! Just click on this link and it will take you to my home page to donate. Plus you get to see a pic of Baby Posh Spice. Thank you so much for your help!!!!

I will update later on how it actually was to have the port removed without Versed drugs. Got to go charge up my Ipod so I don't hear anything!

Much love and hugs to you all!

~Renee

Tea for Two

2009-05-09T19:38:00.000-07:00

Whoa! It's been a while since I updated. The delay isn't because I've been out having fun. . . . shoot dang!

My company laid off 24 people; 6 being from my department. One of the positions was the other Admin Asst. My supervisor is doing her best to keep the other admin's work off my desk, and I am so appreciative that she is doing this. I've been covering evening meetings, at least 2 a week, and it has drained my level of energy back into the fatigue arena. This week there were two meetings, both beginning at 7 pm with one ending at 9 pm and the other 10 pm. I start winding down my day at 8 pm!

I started back into yoga two weeks ago and it feels good to finally be doing something other than walking a little bit each day. The fatigue is such a catch-22. I needed exercise to help alleviate the fatigue, but sometimes felt too fatigued to exercise. Doing some type of exercise during chemo and radiation would have been good for me, but I found myself doing no exercise other than going for treatment and/or going to work. Those going through chemo and radiation - please do something. It will definitely help!

Even though the past weeks have been rough due to the evening meetings and the stress associated with the layoffs, I am actually feeling pretty good! The nails are doing much better and filing them very short has helped tremendously. They are still ugly, but I'm happy that I only have to bandage one now every morning - Mr. Lefty Middlefinger - in order to keyboard.

I received a post card in the mail this week that gave me that catch in the gut. It was from the breast imagining clinic notifying me that I was due for an annual mammogram on June 11th. Could it really be only eleven months since my first digital mammogram and we found something suspicious? It feels like it was forever ago that the cancer was found.

Now I feel so "seasoned" in the cancer patient world. Reading other people's blogs, who are just beginning the journey, brings back so many memories. Sometimes I am awestruck when I think of what my body went through with the chemo and radiation. I let someone do that to me?

Vic is doing very well after his surgery. He still has "discomfort" every now and then, but amazingly has been pretty active. I forgot all about another cancer-related item with him, though. He has a spot in his mouth that the dentist recommended a visit to an oral surgeon to rule out cancer. The dentist said it could possibly be a spot where silver dropped onto the tissue. I now remember wanting Vic to have this done last August before his major surgery . . . he didn't want to, stubborn mule.

Port removal and Relay for Life are this Friday! I'm sure both will be highly emotional events. I am so thankful that I get to walk the survivor lap and watch Vic walk the caretaker lap. Let's hope we both can do it without bawling our eyes out. Dang, I'm tearing up now just typing about it!

It's not too late to make a donation. If you haven't already donated, won't you help me reach my financial goal by donating $10 . . . just $10. Come on, you can do it! Just click on this link and it will take you to my home page to donate. Plus you get to see a pic of Baby Posh Spice. Thank you so much for your help!!!!

My oldest daughter and I attended a tea last night at my youngest daughter's church. Yummy desserts and a new way for us to celebrate Mother's Day. I am so proud of my two girls. They are magnificent women!

For those of you who are mothers, I wish you a wonderful and relaxing Mother's Day!

Many blessings,

~Renee

Cookies

2009-04-30T13:25:00.000-07:00

I wanted to share with you something that was so heart-feltly written by my fellow TNBC sister. I couldn't have said it better!

She calls it a "rant".

i don't

it's what we feel

it's what I feel

bravo, S.F.!

Please click this link to read and absorb what so many people diagnosed with cancer want to say out loud: The Cookie Jar

Hope

2009-04-27T10:40:00.000-07:00

There is hope after a cancer diagnosis.

It WILL get better after the cancer treatment.

And your hair WILL grow again.

Just three things I wasn't so sure of November 2008.

In November, my daughter and her family came over to do whatever it was we needed them to do. I had her help finish an organization project I started before diagnosis. The upstairs room was totally torn apart with piles of like items everywhere. Even though I didn't do much while she organized, it tired me out immensely. I had her stop when most of the task was completed. . .I was too tired to give directions while sitting in a chair. That's how sad it was.

Yesterday I was up in this same room, doing more organizing and I had a light bulb moment. Don't you just love those? I realized that I was able to move around, crawl into the long, large closet, pull out boxes, etc. and wasn't fatigued in 5 minutes. It was great to have something to measure how I feel now compared to 5 months ago.

It's so easy to focus on the negative aspects of cancer and the treatment, and what we used to be like and aren't now because of cancer. But cancer can not take away our internal self and who we are really at the core.

I continue to research the Internet to find my grandmother's relatives. I have a variant of the breast cancer gene (BRCA2) that doctor's couldn't say did or did not cause the breast cancer. Some may say, why give a flip about this, , ,why worry?

I am not worrying on this matter. It's more that I want to KNOW. Know for myself, my daughters, my granddaughters and my niece. Are there others who had breast or ovarian cancer? If so, then that person's relatives can be tested. We can test the generations to see if it truly is a hereditary gene or just a fluke of one of my genes because my mother ate too many bon bons (or whatever) while I was developing in the womb.

While I will be monitored by the medical profession for years to come, and my daughters can be hypervigilant on their breast exams and diagnostic mammograms, I just want to know -- did it, or did it not cause the breast cancer.

I have used the clinical trial creme for the neuropathy for over a week. My feet do not burn! Hallelujah! Now is this the real stuff or is it a placebo and the neuropathy healed on it's own? We'll find out in 5 weeks.

I started the baseline testing this weekend for the clinical trial of ginseng. This involved putting a cotton roll - like the kind your dentist uses - into my mouth before getting out of bed and chewing on it for 2 minutes until it was saturated with saliva. Lovely isn't it? Repeating the process 30 minutes later. The third baseline test is to do the same at nighttime before going to sleep. This is done for two days and today is Day #2. I will start with the ginseng tomorrow.

For those going through cancer treatments now, just know that it does get better. Be kind to your body, eat healthy, exercise when you can and don't be afraid to say "no". It's not a time for us to be super-people. Does this mean lay around all day on the couch or in bed? No, not unless your body is telling you to do so.

Find something good each day and focus on that. I know it's hard to do on those days when the nausea or fatigue has you by the throat. Also important is to have something to look forward to. Maybe a nice dinner during the week you aren't nauseous or a trip to see the ocean . . . just something.

Many blessings and hugs to you. Thank you for being a supporter!

~Renee

Hey!

2009-04-21T08:48:00.000-07:00

Surgery was scheduled for 10:20 - and we arrived at 8:30 am. Ultrasound and radiation doctor came in to find the tumor and mark it up for the cut area. Since the tumor had a blood supply, they mapped out where the "small" veins were. The surgeon was behind schedule and Vic didn't leave the pre-op until 12:30 pm. I hate waiting!!

Vic was out of surgery about 2:30 yesterday. Doctor said it went well and the tumor is out. It was a nerve sheath tumor. I don't have any more info other than that.

Everyone kept asking - including the surgeon - if he was spending the night. We were confused as we thought all along this was an outpatient surgery. Then our concern was raised, what do THEY know that WE don't know.

I got in to see Vic at 3 pm and he looked good. A little groggy, but he snapped out of it pretty quickly. Once his blood pressure and heart rate stabilized and he could urinate, we were free to go. Within an hour or less, he had stabilized but not bathroom trips. And we waited. Did I mention how much I hate waiting?? Three glasses of juice later, he finally got a little out at 5 pm. Probably TMI, but it was the reason we couldn't get out. The nurse "dobblered" his bladder to see if it was empty and it was. So he got dressed and we left at 5:15. . . .and ran into the I-5 had two accidents so let's back up the freeway to Canada routine. We finally got home at 6:30 pm.

This morning, Vic continues to move around well, looks good in his coloring and has had minimal Oxys. Don't you wish we could all be this way after abdominal surgery? I'm envious.

I am heading to work as he doesn't need me to babysit. That's the one thing he is bad at -- being a patient. Doesn't need a nurse or waiting on. I've had to give him a sharp "Hey!" when he went to lift something. Nothing heavier than a gallon of milk . . which leaves the cats out. :-)

Peace over and out!

Tumor House is Closing

2009-04-19T19:00:00.001-07:00

This man is having surgery tomorrow.

This man is so calm, it's frightening.

We are due at the hospital tomorrow at 8:45 a.m. I imagine the surgery will start about 11 am. Surgeon said it would take an hour; resident said it would take 2 hours. This will be an out-patient surgery to remove the Schwanie-man from his body. Actually it's a Schwannoma, a tumor that is a benign nerve sheath tumor composed of Schwann cells, which normally produce the insulating myelin sheath covering peripheral nerves.

Schwanie-man is a family joke. Christy's husband worked out of city and sometimes out of state when they were first married. When she found out she was pregnant, she was asked who the father was . . . she said the Schwanie-man since she saw him more than her husband.

So after tomorrow, the Tobias Tumor House officially closes. No more stinkin' tumors will be allowed!

That's my cat, Whiskers, on Vic's lap. Doesn't he look comfy? Both cats find human laps the best place to rest or sleep. They will probably have a hard time this week . . Vic will be off, but no cat's on his lap due to the location of the surgical site. Poor kitties. Poor Vic.

This weekend was the best! Sun was shinning, I pulled weeds in a little area and then planted some new flowers in this area. I've missed these simple things of life.

~Renee

#89

2009-04-16T18:55:00.001-07:00

Howdy friends and family!

I received the super-secret clinical trial Crisco, errrmmmm, Amitriptyline and Ketamine combined topical today. And I'm patient #89. Shoot dang, it would have been fun to be Patient #99, as in Get Smart Agent 99. Got it?

The label states: Caution: New Drug - Limited to Federal Law to Investigational Use. The 15 tubes are white, super-sealed in three white boxes, which are super-sealed into one large white box. Very clandestine feeling.

To avoid a long trip into Seattle during the rush hour traffic, I asked the research coordinator if the topical could be sent to their satellite office where I received chemo - about 15 minutes from my home. He wasn't sure this could be done as the topical could only be transported by a nurse or doctor or the patient. Wait a minute. The courier transported thousands of dollars of chemo fluids each day, but he couldn't take one overly-white box?

Okay, I understand that Ketamine is a "Club Drug" known as Vitamin K. It's snorted, smoked or injected. Large doses of Ketamine produce effects similar to PCP such as dream-like dissociative states and hallucinations. We are talking large doses of a liquid or powder. For heavens, sake, these are white tubes smaller than a tube of toothpaste, in the white boxes inside an overly-white larger box. I guess if some junkie was desperate enough, they could club the courier over the head, steal the topical and rub the contents of all 15 tubes on at once for a buzz. But why couldn't the junkie do the same to the nurse or doctor? I'll stop now . . .it just hit me weird.

A bright yellow slip of paper fell out of the overly-shite larger box, stating "ALERT! When seeking emergency medical care for any reason . . . . You must bring your Study Medication with you to any Health Care Provider." Now that's a little scary.

I completed about 10 pages of peripheral neuropathy intensity and sleep questions. I will have to complete the same or similar survey at the end of each 3 weeks of using the topical. I'm excited about the possibility that this will help alleviate the burning ring of fire toes.

Going to the satellite clinic, I had the opportunity to talk with the crazy oncology nurse. We talked about my port coming out May 15 and mentioned that I could skip the port flush scheduled at the end of April. Yippeee! I so hate getting injected with the Lidocaine several times around the port, then doing gymnastics with my arm or coughing to get the port to take or receive fluids.

When I first started chemo back in October, I brought up the idea of putting the finger nails into cold water to minimize the nail loss. This nurse thought I was reading too much on the Internet, never heard of it. After showing her my nails today I stated I should have at least tried the nails in cold water - what would it have hurt!? Her colleague - a new nurse - said she recently attended training where this was talked about and the results were great. Surprise, surprise!

Sooooo . . . for those going through chemo right now, just do it. Don't give a flip if your nurse or doctor has never heard of this! It's your body, take control of your treatment. What could it hurt?

I was able to do the two hour lunch break three days this week and it has made a difference already! I can get through the afternoon without dragging. My employers should be happy because I feel more productive. I'm not pre-cancer energy, but it's a start. And I'll take it.

I'm walking in the Relay for Life on May 15th and asking friends, family and anonymous peeps to help me reach my financial goals by donating $10 . . . just $10. Come on, you can do it! Just click on this link and it will take you to my home page to donate. Plus you get to see a pic of Baby Posh Spice. Thank you so much for your help!!!!

I hope the sun is shining in your area of the world. There is much to be thankful, isn't there? God bless!

~Renee

Welcome to Cora and Alli, two new Journey Supporters!

Two Martini Lunches

2009-04-10T21:16:00.000-07:00

If I DID have two martini lunches, I definitely wouldn't be going back to work afterwards. Maybe this might not be a bad thing.

Actually, my supervisor agreed to my plan to help lessen the fatigue by taking two hour lunches. I live fairly close to home and would probably have 1.5 hours of rest and quiet to get me through the rest of the afternoon. I start this on Monday.

We have quite a few extra evening meetings in April and May and I knew I couldn't keep going like I have been. . . . Superwoman. For the next six weeks, some will have one or two meetings. My supervisor asked the other Admin to cover a few for me. My colleague is going on vacation the last week of April and first week of May. . . .oh boy. My supervisor agreed that some other support staff will help with phones and such so I can get through these blasted meetings. Come June, my life will return to staffing two evening meetings and two late afternoon meetings a month.

I've put in for intermittent leave and my doctor has signed a form with the medicalese that says I need more rest. Supervisor has signed my request, now the Director needs to sign. Not sure if I'll qualify for shared leave again; but either way, my vacation and sick leave will be depleted again. And here Vic and I were hoping to have a vacation this year to celebrate getting through 2008.

I was displeased to see that the doctor responded with "six months or more" to the question of how long I would have this "condition" aka fatigue. I am truly hoping and believing that having the consistent long breaks in the middle of the day will help. Maybe Vic won't be the only one doing things around the house during the work week if I get the added rest.

I try to find peace and remind myself that "this" won't be forever when the toes are burning and the nails are hurting. It will be my reality for a few months. I may rail against my body and whine about it in this blog. No, I will 99% probably -- none of this "may" stuff. I believe I am reaching the place where I am friggin' angry at cancer. I am pleased that I never fell into the victim role during this journey. I couldn't go in that direction - my energy had to be spent on putting one foot in front of the other to get through the surgeries, chemo and radiation and show up at work. Anger can be a good thing.

The City has announced that it will lay off employees. This is the first time in a very long time that the City has had to do this. Morale is down and lots of people are concerned. I'm not worried about it, though. It feels really strange to say that because a loss of a job or fear of losing a job used to send me into a tailspin. My last two positions were eliminated.

First elimination :-) , I was devastated; no matter how much they told me it wasn't me or something I did. As a contractor for Dept. of Corrections, DOC decided that my position should be at their HQ. I didn't want to drive an hour each way, so I was out of a job. The second time of being "eliminated", I was scared but thankful - it wasn't a good job fit. Maybe I'm calm because I've "been there, done that"? Heck! I can't look too far in the future - have to deal with just getting through 8 hours of work each day, so maybe that's it! lol

We are hoping for good weather tomorrow. I just want to go pull weeds. Now, don't laugh. But I like to pull weeds - it's instant gratification. Maybe I'll purchase some annuals just to have color and perk up our life. We need some perking! That's my hope for tomorrow. . . .we'll see if the energy holds and rain clouds stay away.

One more week for Vic's surgery! Whoo hoo!!

Over and out,

Renee

2009-04-07T19:15:00.000-07:00

Okay, so it's not tomorrow night or the weekend. But that's what happens when you are having fun (not).

Fatigue continues to be immense. I didn't expect this. And, Kathy, even after reading on your blog about the weeks/months that you had fatigue, I thought, "that won't happen to me". Ha! This sucks. Absolutely is the pits.

The other two post-chemo complaints continue. . . .burning toes and finger/toe nails that want to disengage themselves from my body. This sucks. Absolutely is the pits. Now, we'll add in bone joint pain. The greatest pain is in the fingers - feels like what I imagine arthritis would feel like.

I didn't want this to be a blog entry of whining but it looks to be that way. Whining doesn't do any good, isn't productive, doesn't solve the problem. But it's my life right now. I do my best not to whine to Vic or any people near me, and you, my captive audience, are soooo enthralled by my blog that you get to hear it.

Cancer is such an evil bugger and to eradicate it, they use evil stuff. We hope that the treatment doesn't kill us. But could any of us say for sure what the evil treatment does to us long-term? It's frustrating because if I did no treatment, I wouldn't live decades with this aggressive triple negative cancer. I had no choice in taking the evil treatment versus not taking it. I sort of like to live.

We are each unique and how we respond to chemo/radiation is unique - no doctor can predict how our bodies will react. Likewise, I'm guessing they can't predict how we will react months after treatment ends. I know - and hope/believe - this post-treatment stuff won't last forever. I need to be patient. Patient with my body and roll with the flow on the energy, burning toes, finger/toe nails and now joint aches.

About the Oncologist appointment last week:

Potassium is still low
I'm trying to eat foods that will raise this. Don't mention bananas. I am probably one of a few people in the world who dislike bananas to just eat out of the peel, but love, love, banana nut bread/muffins, banana creme pie (oh soooo healthy) and banana Laffy Taffys. I can eat bananas in Jello, but that would take up too much energy in the evening to make the Jello. Yeah, that's sad.

Port Removal
I have scheduled May 15th for port removal. This also happens to be the opening day for Relay for Life. I was looking forward to participating this year, walking the survivor lap and watching Vic walk the caregivers' lap. I plan to go - gorped up on Oxys probably - but I want to walk that lap!

Fatigue
Dr. V said it can take up to a year to feel normal. Yeah, I've heard that before but felt it wasn't going to happen to me. She has asked that I look for ways to modify my work schedule for a few weeks; definitely no back-to-back late night meetings - which I did in March and will be doing April and May. My supervisor will return to the office this Thursday, so we will talk. I hate going back on intermittent leave and having to deal with the "boy-o" from HR.

I was asked to participate in a study, Study of American Ginseng in Treating Patients With Fatigue Caused by Cancer, sponsored by the National Cancer Institute. The doctor's researcher was excited to see that I scored a "7" on a questionnaire about fatigue. 0 - no fatigue and 10 - the worse imaginable fatigue. I won't know until after the study if I was given the Ginseng or taking a placebo. I sort of believe I will know, don't you?

I was going to start acupuncture for the fatigue, but can't now because of the study. I can't take or do anything that might alleviate the fatigue during the study.

Burning Toes
I was asked to participate in another study - this one for the burning toes . . . Study of Amitriptyline and Ketamine Hydrochloride Cream in Cancer Patients With Chemotherapy-Associated Peripheral Neuropathy. Can't wait to see if it works - if I get the "real"stuff.

Love to all!

~Renee

1st Follow-Up UPDATED

2009-04-02T11:36:00.000-07:00

It is 4 hours until my first follow-up appointment with the Oncologist since chemo finished in December.

And I have butterflies.

8 p.m.

The appointment was no big deal. It was nice to meet this new Oncologist and I will stay with her. No need to look for another one. She said all the things I needed her to say to show me she was the right one.

I'll have a mammogram in June and will see the Onc then. In December, I will have a MRI. I scheduled to have the port out on June 26th, but forgot that is Vic's half birthday celebration (Vic's birthday is Dec 26th and we seldom get to celebrate it the way he wants . . . so he finally agreed to celebrate half years). I will look to see if I can find a Friday in May that isn't already booked with work crapola.

I scheduled this appointment yesterday. Sure enough, I had a surgery anxiety dream last night. Dr. Oz was in it. :-)

I will add more tomorrow or this weekend -- just too tired right now. Vic took me out for dinner and it was nice to celebrate another milestone in this journey.

TTYL!

Renee

Onycholysis. . . Say that fast 3 times

2009-03-29T15:39:00.000-07:00

Hi friends and family,

I know it’s been a couple of weeks since I last updated, but I didn’t want to come back while the complaint department was open. Not that I wanted to receive anyone’s complaints, but rather *I* was complaining.

The nails continue to hurt, but the throbbing has lessened. On Friday at work, I found myself with my head between my legs. Lest you think weird thoughts, let me continue. I was looking underneath the nails, trying to figure out how much of the nail was still connected, wondering if they would fall off. I touched one of the 3 bad nails, and it lifted. Ewwww! The world got white and it wasn’t because the lights just went on. I was so nauseous and faint-feeling. I am so thankful that no one walked by my cubicle right then!

The side effect of Taxotere to the nails is called Onycholysis. Taxane probably cause nail changes more commonly than other drugs with an incidence of nail toxicity ranging from 0% to 44%

One toe nail broke off on Tuesday. It was the little toe that thankfully doesn’t have much of a nail. However, the nail was 100% white. So comparing this white break point on the toenail to the other toes, it appears that 5 more are destined to break off. I am keeping both the finger and toe nails short, in the hope that they all will just grow out and nothing more will come off.

Here are some pics of the nails. I wear Band-Aids on 3 of the finger nails while at work – a lot of my time is spent typing. One night last week, my hand slipped as I was opening a drawer, and Mr. Lefty Middlefinger’s nail hit directly on the edge of the drawer. OMG! Stars and lights, you say? I noticed the next day that there was dark stuff under the nail. . blood?

Fatigue has been rather high this week. I had a late meeting on Monday and Tuesday and I am guessing this is what exacerbated the fatigue. Vic always says, “go take a nap”, but naps do nothing on the fatigue. In fact, I woke up late one day – which makes my boss oh so happy – found that I had slept over 9 hours, but was still fatigued.

I am very thankful that the cancer was caught early. But that little “what if” cloud peeks out ever so often. It again feels as tho I am holding my breath. Will I be able to breathe once I meet the new oncologist this Thursday and after the first-after-treatment MRI or PET/CT Scan? Will it be this way before each follow-up appointment?

I spoke to TB, a 3 year survivor and one of my supports at work, who said that she still gets the “what if” feeling before each follow-up scan or appointment. I hear this same from other survivors online. So I guess it’s not unique to have these feelings.

Several people have reminded me this past week that my body went through a lot, no wonder it’s fatigued. I know this, but I guess I expected to be zippity-do-dah by now. . .it’s been 115 days since the last chemo. Three months and 25 days. Wow! And it’s still causing havoc.

For those who want my secret on counting days . . .I found this on the web.

Here’s a few pics of the hair and eyelashes. They are growing! Just a few positives to keep my focus. The hair is a dark blonde with some white at the temples. Not sure why the back picture shows so much grey! The back is starting to wave, no curls yet. I've called the hairdresser for an appt to get it cleaned up just a little.

Hope everyone has a very blessed and sun-filled week!

~Renee

Mr. Lefty Middlefinger

2009-03-12T12:50:00.000-07:00

Can I vent?

If your answer is no, you may want to click over to another site.

It’s been 204 days since the first surgery
It’s been 185 days since the second surgery
It’s been 100 days since the final chemo
It’s been 37 days since the final radiation

Aren’t we done yet with this cancer thing and side effects?

One would think that with this many days since something happened or ended, I would be back to normal. Yeah, yeah, I know, I will have a new “normal”. I STILL want to know who coined that crappy phrase.

I don’t want this new normal if it means having finger nails and toe nails wanting to depart from my body. Leave already! Let’s get this show on the road. Stick a fork in me, I am so done! I’m tired of babying my left middle finger. Don’t you think this is an appropriate finger to have a nail fall off? I just love showing people this special finger. They go, “Ewwwwww” and then laugh because it’s the middle finger. Some of them don’t know that I really AM flipping them off. IT.HURTS. It hurts to type and in my profession, I type a lot . . . and then it throbs. T.H.R.O.B.S.

The left ring finger still has the red stuff underneath. This is how Mr, Lefty Middlefinger looked several weeks ago. It’s uncomfortable if I press on the top. So, don’t press on it, Renee, you say.

But wait, why should the right hand be left out of the fun? The ring finger is starting to turn opaque white like Mr. Lefty Middlefinger. And it is uncomfortable. Can’t say it HURTS, but it’s getting to that stage. The right middle finger has the red stuff and it hurts.

Let’s do the math here. Two fingers on the left hand + two fingers on the right hand = 4 fingers.

Wait boys and girls, there’s more! For just $19.95, you too can have toes that throb and burn 24 hours a day. Many toenails have the same white opaque as Mr. Lefty Middlefinger. At night, if one of them decides to get caught by the sheet, whamo bamo . . . T.H.R.O.B.

Okay, I’m done. Just had to get that off my chest. But dang it all if Mr. Lefty Middlefinger doesn’t T.H.R.O.B. from that fast, furious typing.

No need to comment. Just nod your head. And send chocolate.

I will remind myself that some other TNBCs have it worse and would gladly trade throbbing nails to have more days with their family.

Peace over and out!

Nuttin' Honey

2009-03-07T17:40:00.000-08:00

Nothing major to report which is wonderful!

I saw the radiation oncologist on Wednesday for the one month check-up after finishing radiation. Doesn't seem possible that it was only a month ago! He said as far as he is concerned, I have a clean bill of health. He did say, tho, that if I had any problems that were related to radiation, that I should call their office, not my internist. Makes sense.

I spoke with the nurse after she did the preliminary blood pressure and weight (lost another 2 pounds, so yeah! Only 35 more to go to reach my first goal) about the port removal. She had worked in infusion oncology before switching to radiation oncology. Nurse Marlene said the exact thing that the oncology nurse said about the port removal. "It's easy. Yes, it's a snip-snip and the port is out." She said it's always easier and faster to take something out than put it in. Hmmmmm. So once I meet with the new oncologist, I will make the appointment for the removal. Oh, but then Vic has surgery. Okay, we'll wait a little longer. :-)

Weather in Seattle is weird this weekend. We had glorious sunshine yesterday and today we have strong winds and snow is coming. Can't wait for it be really spring and have the chance to play in the garden with plants. I even like to weed! Weeding gives me great pleasure in that I can see immediate results . . .the flowerbeds look clean and spiffy.

Vic is calling me for dinner. . .he is cooking taco chicken from a new recipe. I'll let you know how it goes.

Peace!

~Renee

Banana Peels

2009-02-28T17:13:00.000-08:00

This week has been a very tense week at work and I am so glad it is over. Not sure if this has fed into the exhaustion/fatigue I am still experiencing. It's not huge fatigue, but it's still there. I am getting out of the office - which is big in of itself - to walk a bit on the lunch hour. . .it feels great!

During treatment I think it helps to have a job or something (kids, animals) to keep you going. But I believe that once treatment has ended, people should have 3 months of paid leave to heal and get their strength back. Think we could find money for this? No, neither do I.

Thursday found Vic and I celebrating granddaughter McKenzie's 8th birthday. Seems just like yesterday that she popped out into the world and wrapped her dad around her little finger. McK is still a treat and the drama queen. When she climbed into the booth where Vic and I were waiting at the restaurant, she says dramatically, "Oh, Grandma! You have hair! It looks so pretty!" I guess I forget the physical changes that have been going on since I see what isn't there. I should focus on what IS there. . . .and give thanks. I'll have to figure out how to give thanks for the facial hair that seems to be growing a little to fast.

McKenzie's 5 year old sister, Courtney, had her first school performance this same night. She was so cute singing and doing sign language to the songs. Courtney also had the pleasure of introducing one of the songs her classmates were going to sing and she was so scared. Her grandparents were beaming with pride.

Eyelashes are starting coming back in a bit. They are still stubby and not long enough for mascara, but heck, I'm now thinking mascara is over-rated! What is strange is that the amount of eyelashes are not equal on any of the four quadrants or even close in equality. The left top lid has quite a bit of lashes. Some of the lashes are curly, like a pigs tail and some are growing down. Those are a pain. . .I try to push them up with my finger or use my eye lash curler to get them out of the way. It still amazes me how the body has changed and continues to change after chemo and radiation.

I am happy to announce that the dark tan under my arm pit is now starting to peel! I don't remember reading that this would happen, but just checked the web and, sure enough, it does! "Normal" looking skin is showing and I am so thankful to have one part of that area become less disfiguring. I meet with the Radiation Oncology next week and will have to give him a hard time about it. I'm thankful that the sore underneath the breast has finally healed.

Vic (finally) met with the surgeon for his Schwannoma. The doctor couldn't feel the tumor despite some very hard pressing on Vic, left the exam room to consult with the radiologist and review the MRI again. Surgeon estimates that the tumor is 1.5 x 1.8 x 1.8cm. Surgery will be in April.

Cousin Kim - I'm still trying to figure out a way to answer your questions that you posted in the comments a post or two ago. Haven't forgotten.

I don't know how to say it any other way - but thank you so much for everyone's continued support and prayers. They mean so very much to Vic and me!!

~Renee

Blogging with TNBC women

2009-02-22T14:54:00.000-08:00

Tracy died Friday morning with her family around her. This is so, so sad. Here is a woman who was a great Triple Negative breast cancer WARRIOR. Don't even bother calling her a survivor . . .she did more than survive.

In 2007, with low platelets, she rode 1,000 miles on her Harley-Davidson motorcycle with Amazon Heart Thunder (motorcycle adventures for breast cancer survivors). If you haven't read her blog, click on the "low platelets" link and read the entries before and after. . . you get the gist of the spirit of this woman.

We lost another TNBC sister - CalGal - Thursday night. A few months ago, we lost Alaska Deb and Fancy. All with triple negative breast cancer.

This whole blogging thing has changed the look and feel of cancer. Breast cancer isn't something whispered about as it was in the 1940s and 1950s. We can now read about how others dealt with their diagnosis and treatment - validate our fears and find a new way of dealing with a chemo side effect. Blogging allows others around the word to support you and give words of encouragement when the road looks dark.

I had never met Tracy but did learn about her thoughts, feelings and her spirit through her blog. She was a real person, not some fake, phony person on MySpace. Her words helped me get through the treatment journey. I found humor where some might not have found humor having cancer. Tracy sure could!

Read the memory comments people left about Tracy. Will anyone say such great things about you when it is your time to leave this earth and the earthly body? And I'm not speaking to just women with breast cancer. If not, then do something about your life!

While I have not (yet) met Sharon, Kathy, Sue, Patti, Caryn, Christina, Sheri, Lauren, Gina and a whole host of other ladies, you have all touched my life as you shared your journey through breast cancer treatment and the life beyond with me in your words. You all are in my thoughts and prayers as you go through testing, waiting for results, chemo, waiting to feel better, implant fills, and more waiting.

With over 4800 hits on my blog, it makes me wonder how many other TNBC women are reading my blog. Won't you send a comment, or your blog website address, or join as a follower? Otherwise, I have to think that maybe I've clicked on the pages 4500 times and don't remember it!

Wishing you many blessings today and tomorrow and the rest of your life.

~Renee

Tracy

2009-02-18T15:32:00.000-08:00

We hate this disease!

Introduction from the blog of a courageous and spirited TNBC woman - Tracy Pleva Hill

Please keep her family in your prayers.

*#*#*#*#*#*#*#*#*#*#

My name is Tracy Pleva Hill and I was diagnosed with Stage IIb, triple negative breast cancer at the age of 32 in 2000. Ten months after completing chemotherapy in early 2001, I discovered that my disease had progressed to Stage IV. I have since spent seven years being infused with chemotherapeutics to manage my disease.

I have a beloved, beleaguered, adored husband who valiantly remains my most insistent supporter despite all the challenges and hardship breast cancer has brought us. (“In sickness and in health” – who saw this coming?) I also have an nine-year-old son who has never known me as anyone but a person living with cancer. So, I love my husband, raise my son, work full-time and run my home. Only, there is always the cancer.

I have a hard time remembering what I was like before breast cancer horned in on my unremarkable but happy life. It shapes me in unfamiliar ways. Living with Stage IV (advanced) breast cancer elevates the game. It means knowing that your cancer is never going to leave you and that you are going to be on some form of medication for as long as your body can withstand it or until the cancer overwhelms it.I intend to make this f-ing disease work for every little bit it tries to take from me.

Guinea Pigs

2009-02-16T18:09:00.000-08:00

Life is going well for both Vic and I. Vic was the guinea pig today . . .he went for acupuncture on his elbow.

His elbow has given him pain off and on over the past 5 years. Cortisone shots and physical therapy have not cured it, only helped alleviate the pain for a little while. Next step was surgery for him. So, me in my brighter moment said, "Hey honey, why don't you try acupuncture? I have a recommendation for a acupuncturist from one of the ladies at work". What I really meant was, "Hey honey! Why don't you go have acupuncture first and tell me how bad it hurts. THEN, I'll decide if I want to go myself." I'm such a loving wife.

Actually, Vic isn't bother by needles but I am. I can get the pass-out feeling just thinking about it. The port flush this past Thursday hurt like the dickens and, yes, I had to sit afterwards because the room was turning a little white. I had the usual chest discomfort and ended up with some bruising around the port area. We figured out that during chemo, I was never bothered by the needle going into the chest because they had me so gorped up on meds that made me sleepy and calm.

It was good to see the oncology nurses and give them a big hugs. One asked me when I was going to have my port out, which I answered, "As soon as I get up the nerve to do so. Dr. W. wants to take it out in her office and I can't get over the idea that I won't be anesthetized and that I knife will be close to my ear cutting my skin." I'm so dramatic. Nurse MaryAnn told me that it was real easy . . they would numb like they do for the port flush, open up the skin at the same surgical site and do two snips to remove it. I'm assuming she meant that the two snips are to whatever is holding the port in place. Whatever, it's still opening up my skin and me being aware. Vic wonders how they close the hole in the artery that has the tubing in it. I don't want to know. . let him keep wondering.

Fatigue/tiredness is lessening, which I'm so grateful. I want to get out walking on part of my lunch hour to help with the fatigue, but the toenails and toes are saying otherwise. I am going to lose one toenail for sure and possibly 3 others.

I've tried a variety of shoes just for the office to find one that is less uncomfortable. Heels or slight heels are out, as well as any pointy shoe. What feels good is to wear my clogs to work. Then take them off and run around the office in my socks. Not very professional, for sure.

The radiated skin is giving me a little trouble. It is still pink sunburned color, itchy and has itchy bumps on the top of the breast and chest. I have a sore underneath the breast that I've put different salves and ointments on to heal, but no luck. Putting on a bra is rather uncomfortable. The skin on the side and part of the arm pit is brown. My first tan in a long time! Woo hoo!!

We had a nice dinner last night for my grandson's 15th birthday. It's hard to believe that our sweet little boy talks with a deeper voice and is one year from driving. Where has the time gone? He still smirks at my bald head, so teenager of him.

Looks like Seattle will have some sunshine this week. My goal is to get out in it for a bit on my lunch . . and even try to do some walking - burning toes and all. I so want to get on with getting healthy and consistent in diet and exercise.

Hope all is well with you and that you are finding many gratitude moments.

~Renee

Farfalle

2009-02-07T17:52:00.000-08:00

Hello my friends,

I have vacillated on stopping the blog now that treatment is over. I've decided that I will keep it up for awhile, but probably won't write as often. There is much more to this journey-that-no-one-wants-to-be-on than just treatment. There is the "life after" or is that "afterlife"?

This week has been a fatigued and fog week. Ecstatic that the treatment is over, but dang it all, couldn't I just bounce back and be me on Wednesday? Fatigue isn't as bad as the chemo fatigue, but it is here. Usually it comes around in the afternoon and I slink home to my recliner until bedtime. Yesterday, I was having "grey outs" in the morning. Got it? Grey outs instead of black outs? The brain is grey, I couldn't remember and . . .okay never mind.

I so0000 thought I was past the chemo fog part. Is this what is happening? It's been a long time since I've had my "normal" brain it's hard to know.

Me with foggy brain and fatigue story:

I had stayed in my work clothes until bedtime one night this week. Not a big thing but it was out of my normal routine . . and hopefully this tidbit helps you understand the rest of the story. I put on my nightgown, but stayed in my slacks while I straightened the bed and fluffed the pillows. No Mom, I still don't make my bed in the morning.

I brushed my teeth, removed the makeup and did some other things at that end of the house which is away from the bedroom. I came back into the bedroom and started looking for my night gown. Now Vic has a terrible habit of moving my stuff off the bed and placing them wherever. Yes, Mom, if I would put my things away when I'm done using them, I wouldn't have to search for them.

I looked on the dresser, his usual place where he puts my items. Not there. I looked between the bedspread and blanket, blanket and sheet, and between the sheet and bed. Maybe I accidentally covered it up while straightening the bed. Nope not there. I started down the hallway to the kitchen, where Vic was, to ask him if he touched my nightgown. As I was walking, I looked down and happened to see that I was wearing my nightgown! I didn't remember or comprehend that I had put it on.

At least it was a good laugh and fodder for the blog.

This Thursday is port flush day. It has to be flushed once a month with saline solution until it is removed. When will it be removed? I don't know right now. I'd like to keep it at least for the first MRI or PET/CAT scan where contrast die is required as the port can be used for this. Since the first time that the port was accessed, I get this pain down my breast. It lasts for a little while and then goes away. It is simply weird. The nurses don't know why it happens. Guess I'll have to ask the surgeon whenever I see her.

The first week in March, I will see the Radiation Oncologist. At the end of March will be another port flush. At that time, they will do blood tests and I will get those results when I meet with the new Oncologist the first week of April.

So every month, there is some contact with the cancer treating medical profession. How can someone forget about cancer and get on with their life with these reminders? Let alone the fatigue and chemo fog reminders.

Oh, well, life continues and the mysteries remain. Each of us in this journey-that-no-one-wants-to-be-on know that we just keep putting one foot in front of the other and keep moving forward to dance with NED.

Vic meets with the surgeon for his Schwannoma at the end of February. It will be nice to finally find out what the next steps are for this little tumor.

Many blessings to you!

I Rang It!

2009-02-03T17:47:00.000-08:00

More tomorrow . . .

But let me say, I think, wait, I KNOW, this day was very emotional for Vic.

Ring Those Bells

2009-02-02T20:30:00.000-08:00

I had such a great moment of excitement today! I so miss being excited, having the little butterflies in your stomach kind of feeling. The excitement? That tomorrow is my last treatment of any kind to kill any lingering breast cancer cells that may be floating in my body.

Cancer has become a way of life at our house and work places. Our lives have evolved around it for 8 months. . . . three seasons. We couldn't make plans for short-term activities – forget about long-term! Juggling the doctor appointments, treatment times, and levels of energy sometimes made everyday life out of kilter. Would I have enough energy to go to the grocery store after work? Will I have taste buds so we could enjoy dinner out? Etc., etc., etc.

Some people don’t understand that though tomorrow is the last day of treatment, cancer will be with us for the next few years. My chance of recurrence is low since I completed chemotherapy and radiation. Recurrence of my type of cancer (triple negative) has a higher percentage of recurrence in the first 2 years. After 5 years, I am safe( r ) than those women who have hormone-fueled tumors.

Am I going to focus on this? No, I won’t. But one can’t help but have it in the back of the mind.

I have done all that has been asked of me medically. Now it is up to me to make some changes to my life to better the odds.

Radiation went well today. Still pinked out. One of the radiation therapists won’t be there tomorrow, and she gave me a big hug after treatment today. She said it was a pleasure to have such a happy, pleasant and smiling patient. Isn’t that sweet?

I am sooooo looking forward to ringing that bell with Vic. Even though he didn’t have the chemo or radiation, this has been his journey too. Don’t know what the bell is? Tomorrow you will!

Pink Panther

2009-01-29T19:47:00.000-08:00

Today was Lucky 13 of 16 radiations. Almost done!

I'm not sure if my skin would have held up if I had the usual 30-36 radiation treatments. Yesterday, I was pinked out. Today was the same. It hurts like a sunburn (when was the last time your ta-ta or armpit was sunburned?).

Fatigue is starting, though. Not as bad as the chemo fatigue, which hit like a ton of bricks and hit quickly. This is more gradual. I've also noticed that the chemo fog is back . . . trouble thinking or finding words, trouble remembering! Part of fatigue, tho, is the thinking and find words issue.

In fact, two nights ago, I forgot that one of the burners on our ceramic cooktop had been on. Yeah, you got it - burns. Second degree burns on two fingers. Vic had turned off the burner and removed the pot of pasta for to drain it. The sauce was still cooking; I took off the lid from that pot, and placed it upside down on the burner. Didn't want to get the burner dirty! After stirring the sauce, I went to pick up the lid, putting my hand underneath the lid to grab the top knob. My hand was directly on the burner. It took quite a while of soaking the hand in cool water to get the pain down enough to bandage. Oxycodon was my friend Tuesday night!

It's almost the weekend . . . thank goodness. I need some rest and will hope that the fatigue lessens. But what I've been told by the doc, I keep cooking after radiation stops . . .and the fatigue and sunburning will continue.

Peace and blessings to you!

Cancelled

2009-01-26T19:56:00.001-08:00

I lost my cell phone this morning, so didn't receive the phone calls from the radiation staff - notifying me that the machine was broken. Now, that sort of scares me, to think this humongous piece of equipment is broken. Did it fall? Okay, that's MY fear. I won't project it forward. lol

Those thoughts do cross my mind as I'm laying on the table. The machine is large and I imagine it weighs a significant amount. As the big radiation part moves over me, I pray that the weight on the other side stays in place. Just silly I know.

Anyway, no radiation today. My radiation end date is now February 3rd. No missing those 16 zaps. Today would have been No. 11.

Once the radiation therapists left the room last Friday, tears came out of no where. I couldn't stop them, nor could I wipe them -- had to lay still until the radiation ended. It always amazes me when the tears seemingly come out of the blue.

When the sweet therapist came back into the room, she asked if I was okay. I had to acknowledge that the tears just come when I allow myself to think about all that my body has gone through -- surgery, chemo and now radiation. Why do we not give ourselves permission to be sad or angry? Angry at the cancer beast?

As one lady said, who happens to be on her 2nd round of breast cancer, "they can poison us, they can cut us, and they can burn us, but we still survive". Amen!

During the first part of this triathlon - surgery - I felt like I was a breast walking on two legs. That didn't occur during chemo since no one looked or poked or cut the breast. Now with radiation, this feeling is back. Radiation people don't cut, but they poke, write on it and look at it for any side effects. Just flop that baby out for all the world to see.

Listening to Josh Groban's, You're Still You, on the way to radiation, may have started the tears. I have so many mixed emotions about the end of this phase of my treatment. I'm excited, happy, nervous and scared. I am so willing to have a few more rads or a few more chemo treatments. I want the assurance that the beast and the beast's mini-cells are gone - gone 100%.

So back to Joshy. This was the last thing I heard before walking to the building on Friday. It was in my brain, entered my heart and waited until I was relaxed to break through and allow the tears to flow.

You walk past me
I can feel your pain
Time changes everything
One truth always stays the same
You're still you
After all, you're still you

I'm still me. This beast didn't destroy my core beliefs, it didn't destroy who I am. I'm still me!
A loving, darn funny, creative and intelligent creature of God.

You're Still You

enjoy!

7 of 16

2009-01-20T20:29:00.000-08:00

Almost half way there! Radiation treatment itself is easy and piece of cake.

I am experiencing some sensitivity on the side but do not see any redness. Maybe some brown . . . you think I can get a tan? Whoo hoo!! For those who don't know me personally, I do not tan, even after going to tanning salons.

The skin on the breast is red and it shows some swelling. I met with the nurse and one of the radiation docs after treatment today. They didn't think the redness or swelling was from the radiation treatment, "as it is too soon". Can't believe that the doc did the "must be an infection" routine and prescribed antibiotics. Seven days worth for 35 freaking dollars! Obviously not a generic antibiotic.

I will meet with my regular Rad Onc on Thursday, so we'll see what his opinion is.

Thanks for checking in! I hope things are going well for you!

~Renee

They Were Here Friday

2009-01-18T16:01:00.000-08:00

C H E M O

six weeks since it ended and it keeps on giving.

or in this case,

T A K I N G

Chemo has taken my eyelashes.

They were here on Friday - I saw them.

I put mascara on them before going to work.

Can you see the gap in the middle?

Yesterday, was a laze around the house day, watching last season's 13 episodes of Damages with Glenn Close. So no makeup was necessary. However, today I dressed and put on full-face makeup to go to some friends. . . .and noticed a space between my lower eye lashes. Upon further investigation, I discovered some stumps on the upper eye lid.

My eyebrows and eye lashes had thinned about the 4th chemo which was 6 weeks ago. No biggie, I could fill them in with cosmetics. Revlon's Fash Fantasy has been wonderful in minimizing the loss up to now. But without the eye lash, no covering up now!

The skin around my eyes and on my face has aged at least 10 years with chemo. The skin on my hands has thinned and it is a challenge to keep them hydrated. Papercuts go deep on the paper-thin skin.

This rates right up there with the loss of my hair.

Speaking of hair, I have more growth . . .on the legs and the head. Why couldn't the eye lashes stay and the hair on the legs not return. Or, how about the hair on my face? That could have stayed away! But oh no (said sarcastically), my eyelashes had to fall out now. I guess it could be worse.

But it rates right up there with the loss of my hair.

Here is a link to a picture of the eyes and you can see some of the hair growth. Yes the eyes are a little red, they had tears in them before the picture was snapped. The "fullness" of the hair isn't even - mostly the top is filling in. Sort of looks like a Chia pet.

I guess it could be worse.

So how is YOUR day going?

10-20 mgs Melatonin

2009-01-16T18:57:00.000-08:00

I take 10-20 mg of Melatonin most nights. Here is an interesting article about the breast cancer link with low levels of Melatonin. Besides taking your Vitamin D, are you taking Melatonin?

Further evidence for breast cancer-melatonin link
By Andrew Czyzewski
16 January 2009
Cancer Epidemiol Biomarkers Prev 2009; 18: 74-79

MedWire News: Postmenopausal women are at increased risk for developing breast cancer if they have low levels of the hormone melatonin, US researchers report.

The findings replicate those of a previous smaller study by the team, lead by Eva Schernhammer (Harvard Medical School, Boston, Massachusetts) showing a similar relationship between melatonin levels and breast cancer risk.
“Results from this prospective study add substantially to the growing literature that supports an inverse association between melatonin levels and breast cancer risk,” comment Schernhammer and co-author Susan Hankinson, also from Harvard Medical School.

Previous studies indicate that night-shift work - a surrogate for exposure to light at night - is associated with an increased risk for breast cancer.

Furthermore, results from animal studies and in vitro data suggest that the sleep hormone melatonin may be involved in the induction of neoplastic growth.
More recently such findings have been extended to humans, where researchers have measured melatonin levels indirectly to probe a possible association.
For the current study the researchers used data from the Nurses' Health Study cohort, which included 18,643 cancer-free women who provided morning urine samples from March 2000 through December 2002.

Measures of the melatonin metabolite, 6-sulfatoxymelatonin (aMT6s), were available for 357 postmenopausal women who developed breast cancer through May 2006, along with 533 matched control women who remained cancer free.
Schernhammer and Hankinson found that an increased concentration of urinary aMT6s was significantly associated with a lower risk for breast cancer (odds ratio for the highest versus lowest quartile of morning urinary aMT6s=0.62).

There was no apparent modification of risk by hormone receptor status of breast tumors, age, body mass index, or smoking status.

Melatonin has been available as a dietary supplement in the USA since 1993 and is used by frequent flyers for jet lag and by people who work rotating or night shifts. Whether it has any value as a preventative agent in breast cancer, however, remains to be seen.

The research is published in the journal Cancer Epidemiology Biomarkers & Prevention.

Draw The Circle Wide

2009-01-13T19:43:00.000-08:00

Today was the 2nd radiation and it was quick. I was on the table less than 5 minutes - and 3 minutes was spent adjusting my body to the laser beams and the radiataion therapists walking out of the room!

The machine starts on the left, zaps me and then rotates to the right side and zaps again. I think each zap is about 30 seconds.

I am having the "Canadian study" 3 week radiation. The rads are higher, 265 versus 200 if I was doing 6 weeks. I go each day, Monday - Friday, on my lunch hour. Thank goodness for having Saturday and Sundays off!

I did question the large size of the circle (get the song title of this update?) that they drew on my skin yesterday. This entire breast area - and then some - is being radiated. I thought it was going to be a small beam right into the area where the tumor was . . .not the whole freakin' breast. It will be an item for discussion with the Rad Onc on Thursday.

I am to use aloe-vera gel at least 3 times a day - preferrably 4. The gel can't be used within 4 hours of the treatment, so finding time to get 4 in is a challenge. Besides, the gel is sticky and takes a while to dry before I can put clothes on. I can picture me in the work's restroom stall applying gel and fanning the skin until it dried.

I feel good, energy level is coming back up. The two long-lasting side effects from the final chemo are improving. The skin on my palms began to peel and went through 3 layers. The other issue was the red marks underneath the nails and the pain of the nail beds. The marks are still there, but the pain is lessening. Yeah!!

Thank you all so much for your continued good thoughts, prayers and support! This journey would be that much harder without it.

Hugs to you all!

~Renee

Anticipation

2009-01-09T13:39:00.000-08:00

Anticipation, anticipation
Is makin' me late
Is keepin' me waitin'

Dontcha hate it when someone tells you not to move and breathe normally, that's when your nose itches and you want to take big gulps of air to calm yourself?

The 2nd part of the simulation was a piece of cake! I was escorted to the treatment room by a pretty darn cute young man (sorry Vic) and met 2 other Radiation Technologists. All three were very nice and respectful of covering the breast when they weren't marking the skin.

They moved me around a bit on the little table to get the laser beams lined up with my tattoos, then left to take an x-ray. They came back into the room, did some more measuring and moving my body around . . a few more “pictures” and it was repeated a 3rd time. And I was done! Total time was about 20 minutes on the table. The only discomfort was afterwards - to my shoulder that has an old rotator cuff injury.

I found out that I will have two “hits” of radiation in different areas. I asked about it as I want to know if the beams are hitting my lungs or ribs. They will draw a circle around the area on Monday – the Tech made it look like a large area, but maybe she was just gesturing. I do need to find out if they are zapping the lymph node area in the arm pit. They shouldn’t since no cancer was found there. I still need to to find out if I am doing the 3-week Canadian protocol which I think is at a higher dose.

Some of the side effects of radiation include swelling of the breast – and this usually goes away a few months after treatment ends. The skin can become darker and sunburned in the area being radiated. I’ll need to get some aloe vera gel and start using it right away. Thank goodness I kept the post-surgical cotton, no wire, zipper-front bras!

Two main side effects that won’t be seen until years down the road are rib fractures and a cough (radiation pneumonitis). The occurrence is less than 1% for the rib fracture given the new radiation equipment. It’s not something I’ll worry about now, but do want the info for my files. Radiotherapy can damage the heart if the left side is being radiated. I am fortunate that my right side is being zapped.

I just found out that my oncologist is leaving Seattle and returning to Florida. I’m not happy with this. It’s so important to develop a good trust relationship with the oncologist and I have that now. Guess I’ll have to research who else from Virginia Mason Hospital sees patients at the Federal Way satellite office.

Update on Vic:
He has an appointment to meet with the surgeon on February 27th to discuss his Schwannoma tumor. Vic says he is doing okay on the “discomfort” from the tumor. It will be nice to have this behind us.

Hope you all have a great weekend!

~Renee

Luminous Emotions

2009-01-06T19:42:00.000-08:00

When I started this blog, it was a means of letting family and friends know what was going on with Vic and I in the land of cancer. Then it became a way to document the procedures. After chemo started, I referred back to the blog to see what happened on which day . . .sort of wanted to know if what I was feeling was “normal”. As if anything to do with cancer is normal.

I also wanted to let other women facing breast cancer know what the journey was like for me. I found it helpful to read other blogs . . and sometimes not so helpful as it scared the crap out of me. But I needed to read/hear from others who had gone before me – not rely just on the doctor’s words of how the procedure was going to be. I should have asked the doctor – “So, when did you have [insert procedure]?” They can’t really know what it’s like unless they’ve been on the surgery table or in that chemo recliner.

It was scary to put out for the world to read that I had hit a black hole of depression after surgery. But it was real and the feelings were real.

We often hear, “S/He is battling cancer”. I thought these words were weird when I first was diagnosed – battle? What battle? It wasn’t until chemo did I understand. Chemo did feel like a fight and battle. A battle to keep nausea at bay with antiemetics. A battle to find something palatable to eat. A battle to make complete sentences or thoughts because of chemo brain. A battle to find strength to go to work (forget strength to do things around the house!). It was just a battle. A trying and tiring battle.

I’ve been very emotional for the past few weeks; tearful. Energy to get to work but zero energy to do anything else. Is it sadness? Is it depression? Is it because I’ve used up a year’s worth of energy and emotions to battle through chemo?

Christmas and Vic’s birthday and the lack of presents started the roller coaster of emotions. Anger at not having the energy I normally have. Sadness.

Some positive and not so positive changes have happened at work. My responsibilities may change once the director returns from her 2-month medical leave. This might be a negative and I need to figure out how I’m going to deal with it. Is this factoring into the emotions the past few weeks? Probably.

I was fearful of the simulation – fear of the unknown. I am anxious about this 2nd simulation coming up Friday – the unknown again. Probably factoring into the emotions as well. But I will make it through this 3rd leg of this cancer triathlon. They tell me it is the easiest of the three.

= = = = = = = = = = =
I wrote the above on Sunday before I forced myself to get out of the house. Most weekends I stay in – I’m self-conscious about the scarf and no hair. I know, I know. I shouldn’t be – but I am. I am comfortable going to work because they accept me. They were there from the beginning and have watched the transformation.

When a customer looks at me and does that double-take – and you cancer survivors know what I am talking about – I just give them a big smile. Do I want to smile? Nope. It’s my way of taking control of the situation. But when I’m in public, I don’t do the fake smile routine.

It was good to finally process all the emotions that have been circling in my head for a few weeks. Acknowledge them. Deal with them. Heal them.

This cancer trip causes your emotions to go every which way. And it can change from hour to hour. And that’s okay.

I've done the research on Triple Negative Breast Cancer, research on the surgery, the port-a-cath, research on chemoland, and research on radiation. It helped prepare my questions for the doctor visits.

Now I'm researching how to have a healthy survivorship . . . a healthy after-cancer-triathlon life. I found a great website - Wendy Harpham on Healthy Survivorship. Here are a couple of her entries that helped me to get out of this funk.

Stressed About Stressing
Psychological Interventions Improve Survival
Indirect Health Benefits

~Renee

"You see, it's never the environment; it's never the events of our lives, but the meaning we attach to the events - how we interpret them - that shapes who we are today and who we'll become tomorrow." -- Anthony Robbins

Radiation Sim Part 1

2008-12-31T18:49:00.000-08:00

Or was it Radiation Stimulation? Just a "t" separates the two words. :-) I could have used a glass of whine instead of tea today.

It wasn't as bad as I thought it would be. I did have some anti-anxiety meds in me which helped to lower the high level. It is the fear of the unknown that gets me . . .nervousness that can get blown into anxiety. I've learned that knowledge can keep the feeling/thought level at nervousness and not escalate to anxiety. I didn't have all my questions answered before I went in today.

I was informed that today was Part 1. Hmmmmmm. Don't recall that being mentioned last Friday. After changing into a gown, Radiation Therapist Sandy led me back to the CAT scan room. Here's what I saw.

After laying down on the table, Sandy had me place my hands in the "stirrups". She adjusted me on the table for about 10 minutes, getting me just right for the scan. After that, Sandy marked the ends of the lumpectomy scar and very respectfully covered my bare chest with a towel before calling for the doctor. I am very interested in finding out how much the doc's bill will be for this: he put dashes around my breast and chest, talked to Sandy for a few seconds and left.

Then the CAT Scan began and lasted no more than 10 minutes in the big donut. My total time on the table was about 25 minutes, which was okay.

I had 3 tattoos, one in the cleavage area and one on each side in the armpit area. For rads, they will align my body with two beams pointed at the sides so I'm not "listing" .. . . did Sandy compare me to a boat? Maybe it was a yacht. I'm not sure how the tattoo was actually done, but I think she put the ink on my skin and then poked me with something. The one in the cleavage was slightly uncomfortable, but very short in duration. I felt nothing in one armpit while the other was a little more uncomfortable.

Part II of this stimulating experience is next Friday, Jan 9th. I was informed that this one would take a bit longer. The radiation oncologist and the medical physicist, or dosimetrist, will work to find the best way to aim the radiation, including using a computer.

Actual radiation will start Monday, January 12th. I will have to confirm this with the doctor, but Sandy said 16 sessions. So maybe I did qualify for the 3 week Canadian study! I will go Monday-Friday on my lunch hour for the radiation. Might be tiring, but I believe I can still go lay down once in a while at work.

It's been 4 weeks since my last chemo and my skin and nails are still taking a beating. A 3" circle on my right hand and 1" spot on the web of my left hand are losing layers of skin. The itching and cracking is getting to be too much. I've used some ointment that my dermatologist prescribed a few months ago for something similar - but no where near the severity as now - but the ointment is not working. I've kept Bag Balm on the spots as well. Guess it will be yet another doctor visit.

Here's a pic of my nails. The red lines are on the same two fingers on each hand. Weird. The nails hurt and if I lift anything with these fingers, the pads hurt. I am hoping that the nails do not lift.

After what we've gone through this year, I wish I could say that 2009 was going to be a drama-free and health-free year. We will wish for this in 2010 for sure! I DO hope you all have a peaceful night tonight and take the time to reflect on the good things of 2008. I know Vic and I will be doing this!

Hugs to my family, friends and sister survivors,

~Renee

Radiation Update

2008-12-28T17:50:00.000-08:00

Short note. . .

Met with the Radiation Oncologist last Friday (Vic's birthday). Nothing extraordinary. However, my anxiety was high as I wasn't sure if it was the simulation or planning session.

For the planning session, I was told that I would have to lie on my back, for about an hour, with my hands holding onto a bar above my head - and not move. I'm such a ninny, but being told I have to hold still for a great length of time causes me alot of anxiety. . . the feeling I get with claustrophobia.

I will go for this lovely planning session this Wednesday at 10 am. Going to go slightly medicated. Not sure if Vic is going with me, but I figured I could take the meds on the way to the session and be "calm" by the time it starts. I won't take too much that will prevent me from driving back to work afterwards. We'll have to think about this some more.

I will be going for radiation Monday through Friday. They won't know if I qualify for the 3-week "Canadian study" until the planning is completed. Otherwise, it's 6-7 weeks, Monday-Friday. Oh my!

It feels like this journey will never be over. Next week I go see the oncology nurses to have my port flushed. I will see them once a month for this until the port comes out (another anxiety causing concern - it will be done in the doctor's office).

I know I just need to keep plugging along and doing all I can do to beat this #&%^$ cancer!

More later . . . .

Hugs to all!

Merry Christmas!

2008-12-25T07:11:00.000-08:00

I am so glad to be able to say this to you all . . . Merry Christmas!

It's not about the presents, tho I did lament the normalcy that I so wanted in my life to just be able to go out and buy them. It is about celebrating the birth of Jesus Christ. It is about family.

The excitement of Christmas is being with my children and grandchildren. While they may forget which present they received from me, I so want them to have the memories of good times that we spent together. I love them so much! The two little ones' eyes will light up and big smiles will appear on their face as they run to me to give me a big hug. Why can't we treat everyone in our lives this way? What a big difference our lives would make in others!

Today is no cancer talk, no health discussions, no "what is next", and no fear. It is a time for celebrating life -- Jesus Christ's, my family's and my friends'.

May you find the joy and love in your life today and every day! It may be hard for some to find the love and joy given their current circumstances, but it is there. Trust me . . .

Here is my favorite song by one of my favorite artists . . . Sandy Patti. Scroll down to the video.

Lift up your heads
No need to mourn
His hand is stretched out still
For unto us a child is born
His promise to fulfill
Jerusalem!
He cried for you
He did not come to us in vain
His loving arms are open wide for you
And he will come
He will come again

Bethlehem morning

Is more than just a memory
For the Child that was born there
Has come to set us free
Bethlehem sunrise
I can see Him in your eyes
For the Child that was born there
His spirit never dies
His star will never, will never grow dim
And it's a brand-new dawn
A new Jerusalem
And we and we will reign
We will reign with him

Bethlehem morning
Is more than just a memory
For the Child that was born there
Has come to set us free
Bethlehem sunrise
I can see it in your eyes
For the Child that was born there
Is the King of kings
And the Lord of lords
And He will come again

Let It Snow, Let It Snow, Let It Snow

2008-12-20T10:59:00.000-08:00

Seattle is home and doing pretty good. We are so thankful and happy to have our 4-legged friend back.

We brought him home Thursday night with his IV capped off to see if he would eat in his home environment. It didn't go well. You could tell he was traumatized from his ordeal and having the IV still in his leg. Vic was able to get him to eat a little Friday morning - his first food since Sunday. Seattle went back to the vet hospital Friday morning and they released him last night. He was given appetite stimulation drugs and he is eating just fine! He is weak - can you imagine being in a cage with no exercise or food for 5 days?

I was able to get out on a lunch hour this week to buy Vic a birthday gift. That small act lifted my spirits. Even though he saw the gift already (brat), it felt good to do something "normal". We went out last night after work to get the last items for Christmas.

Today we are preparing for the new round of snow and wind that is expected tonight. The Seattle area just can't handle this amount of snow. . . . there aren't enough snow plows and equipment to clear all the roads. It doesn't make sense to purchase alot of snow equipment given that the area gets hit with big storms every couple of years.

The post-chemo dry eyes and blurry vision continues. Vic just brought home a new humidifier so we'll see if that helps. I am using TheraTears 4 times a day, but it helps only for a little while. Then let's go into the dry skin . . .ugh. Winter always brings about dry skin for me . . .but add in chemo, it is so much worse.

The fingers and toes continue to hurt. Not sure how much is neuropathy and how much is from the nails. The nails hurt when buttoning shirts, typing and when I press on them. Each hand has two nails with red/pink marks starting at the top. The article I just linked talks about the line reflecting the timing of chemo. I've found that keeping the nails short helps, but darn if these things aren't growing an inch daily! Okay, I exaggerate . . . but I haven't seen this much nail growth in my life!

While I am so glad and elated that chemo is done, it is definitely a gift that keeps on giving and giving and giving.

Hair continues to grow and fill in. Anyone going through chemo, I highly recommend using the 3 product system of Nioxon! I started using it right after I buzzed my hair and have never gone completely bald . . smooth, shiny bald. I've had peach fuzz the entire time and now 3/4" growth. Losing the hair and finding what's right and comfortable to wear (scarves, wigs, hats) is the hardest part of this whole journey. I find that I still battle the "depression" when I see myself in the mirror.

Life continues and I'm thankful for that!

~Renee

Like a Sad Song

2008-12-17T20:14:00.000-08:00

Seattle is still hanging on!

Vic and I visited him tonight at the vet hospital. He looked very depressed in his cage, hooked up to an IV. Vic took him out and Seattle enjoyed being petted and rubbed. He even purred!!! Last night, Vic said Seattle wouldn't/couldn't make a peep . . and he (not Vic) is a very loud and long-lasting purrer.

We spent about an hour petting and combing him as he loves this. We were waiting for Seattle to bite Vic, as is his usual play time with Vic, but no bites. The Vet spent quite a bit of time updating us on what improvements Seattle had made - no vomiting or diarrhea - and what he had to do next before being released - eat something. We mentioned that Seattle likes Friskies, which our other cat eats. Friskies is forbidden on Seattle's diabetic diet. Vet said that's "candy" and if Seattle would eat it, he could have. So off I go to the store, leaving Vic with Seattle.

No dice. He wouldn't eat it. Could it have been that I bought the wrong type of Friskies? Who knew that Friskies makes regular, grilled, flaked, chunky, sliced varieties? Not me! We tried three other types of cat food that the Vet had. Still no dice. One was an appetite stimulating food. Cats know when they shouldn't eat we were told.

I will be taking the "right" Friskies to the Vet's on my way to work tomorrow.

Seattle is on Compazine, which is one of the drugs I first had for nausea (and which caused me to have high anxiety and the willies). It was really weird to be able to relate with the Vet about Compazine, discuss other anti-nausea meds, appetite stimulation drugs and the need to get calories up even if it means eating candy/dessert. Look what I've learned from having cancer . . . $60,000 later! Makes me wonder how much this whole breast cancer crap will cost before I get to the goal - NED (No Evidence of Disease)?!

I haven't gone out into the crowds shopping for Christmas or Vic's birthday (Dec 26th) or Vic's Christmas present(s). Daughter Christy picked up two games for me on Black Friday to give to her daughters, which was much appreciated. Last Saturday my energy was up to watch Christy's church play - which she was in - and a quick run into a non-mall store to buy three presents. Vic is out now picking up a few remaining gifts.

I am feeling a bit guilty (and sad) that Vic continues to have to pick up the slack. This &$#! cancer has taken so much from both of our lives. Right now it's taking my energy. I barely have enough energy to survive at work 8 am to 5 pm and perform almost to my best.

Most Christmas' finds me running out on my lunch hour to do some quick, but specific shopping. I love doing my holiday shopping this way. Now I have to be concerned about saving that lunch hour energy to finish out the day. This sucks!

I am really hoping that my energy reservoir is full this Saturday or Sunday so I can at least get Vic a birthday gift. He always gets robbed on celebrating his birthday anyway - cancer shouldn't rob him of at least a present!

~Renee

Life Continues . . .

2008-12-16T20:23:00.001-08:00

Nothing major going on in our lives on the health front. Vic is still waiting for the surgeon to review his reports and expects to hear from them this Friday.

I'm having a lot of fatigue spells. Last night was especially tough as it was an effort to even talk. The fatigue was still around this morning; I had to take a 30 minute "nap" at work just to get through the rest of the day.

Chemo-brain type stuff is happening more often. Today at work, I forgot to do the deposit for the office (due by 10 am). Totally forgot! I've also been saying things and people are looking at me weird. Like, can't they read my mind and figure out what I meant to say? At least I can still laugh at it and myself.

One of our elderly cats, Seattle, is very sick and has been in the vet hospital since yesterday. The vet thinks it's pancreatitis. We've been dealing with Seattle's diabetes for a few months, giving him daily insulin. It is a sad night here at our home - lots of "what ifs" and tears. Please pray that the antibiotics and all the other things the vet is trying do work.

If Seattle doesn't improve tomorrow, he will more than likely go to kitty heaven. It will be a hard day for both of us as we love this little guy so much. I hate the idea that if he doesn't respond, we go to the vet's after work to say our good-byes. What a heavy thing to hang over us all day.

I wish my BC sisters a wonderful Wednesday tomorrow!

~Renee

San Antonio Breast Cancer Conference

2008-12-12T21:22:00.000-08:00

There is a breast cancer conference going on right now in San Antonio, TX. Great news is coming out already in regards to Triple Negative Breast Cancer.

Can we say "yahoo!!!!!!"

Dr. Peter . . are you there? Dr. Pinder. . .are you there? Can I join you and bug the heck out of you with questions? Call me. . .let's do lunch. I'll pay.

MUC-1 Vaccine Trial
Sign me up! Requirements include surgery, chemo and radiation to be completed. Okay, that's it! I'm doing the radiation!

DNA Repair
Remember I said that there were no markers for breast cancer - unless it gets to the metastatic stage (per Dr. P)? More good news!! Yes, there are "mights" and "maybes" in this article, but it could become a "fer sure".

Early in my journey, I was told that big pharmaceutical bucks were going to be thrown at researchers for triple negative breast cancer. TBNC has become the "hot" topic in breast cancer in the past few years. Researchers already came up with drugs for estrogen and progesterone fueled tumors, but nothing was there for TNBC besides surgery, chemo and radiation.

I truly love this analogy that my on-line sister survivor wrote the other day. It really got me to thinking. I assumed that once chemo and radiation were over, I might be tired or chemo-brained for a few months . . . then I'd be back to Renee and life would be normal.

It has been 8 months since Kathy finished chemo. She finds herself still having chemo fogs and the fatigue crashes (she has put the weird fatigue feeling into words much better than me). My co-worker told me that when she interviewed for her position with the City, it has been a year since she finished chemo. It was a struggle for her to do the interview - she still had side effects from chemo. In fact, she still has some neuropathy in her feet and it's been 11 years!!

I never bought into this "you will have a new normal" crap. Yeah, the new normal is that you are never free from the medical community and testing, poking and prodding . . . and worrying if that little ache is mets (metastasis).

In my mind, I have broken this cancer trip into three segments. Surgery, chemo, radiation. Period and I'm done. . stick a fork in me. My way of managing the scary, big, overwhelming, all consuming, cancer crap. Can I say crap a few more times? It's not what I really want to say!

The outcomes from this research may, might, gonna, will help us get back to our "real" normal.

Who knows, maybe I will live to mimic my idol, Maxine!?

Many, many blessings to you and your home!

~Renee

P.S.
Please visit this cancer sister's blog and leave her a note. We all need to step outside of our comfort zone and offer support to Judy. I don't know Judy personally, but came across her blog when looking for other TNBC peeps.

You will have to sign up to access Care Pages, but it's free and they don't add you to a spam list!

Paris is Burning

2008-12-11T19:17:00.000-08:00

Full day at work today . . . .hit the tired wall about 4 pm, but kept plugging along until 5 pm. Nausea is slight so that is no problem. The problem, though, is the neuropathy. I’ll call the doc tomorrow to see if there is anything that can be done about it other than riding it out. I also haven’t been taking as much glutamine as I was right after chemo. Maybe I’ll kick that back up to 30 grams.

I can feel my fingernails trying to lift. They hurt, but I am babying them so they don’t. I’ve been using the sides of the fingers to pick up items. I’ve also cut the nails pretty short so they don’t extend beyond the finger tips. The finger pads hurt and they are very dry – I can see cracking lines forming. Again, I’m doing everything to keep the cracks from forming – using Bag Balm. Stinkiest stuff around, but this is what was recommended by the oncology nurses.

I also have to use the Bag Balm each evening on the toes . . .they hurt as well . . burning and tingling. I am so glad that chemo treatments have ended. Not sure what would have happened to these body parts with more chemo.

I can tell the difference in the level of "chemo brain" this time. It has increased. Words don't come easily when speaking, I am having challenges spelling, and I can't read my novel by Catherine Coulter . . . can't remember what I read the last time the book was open. Now we get to see what the long-term effects will be. . .how long will the tiredness or chemo fog last? This is scary.

We meet with the radiation oncologist, Dr. B, on Vic’s birthday, December 26. We had met him initially in July right after the diagnosis. But since that meeting was pre-surgery and before we knew about the cancer type and size, it was a short visit.

I had hoped to have the radiation at our local hospital – which happens to be across the street from my work! I wasn’t comfortable with the local radiation oncologists, so decided to go with Dr. B. What this means is driving to Federal Way (5 miles west of our town) on my lunch break for daily radiation, Monday through Friday. I’m hoping that I can get in and out and back to work within that one hour. We’ll find out how many radiations I need. I am hoping for the 3-week Canadian study. That would be a dream. But it has to be sufficient quantity to assure me that we have done all we can for TNBC.

Regarding hair. . . on the head it is still growing. I noticed today that the eyebrows are getting thinner . . .had to fill them in a bit with pencil.

I have heard of women who lost their eyebrows and eyelashes while on chemo, had them grow back after chemo only to fall out later. Keeping my fingers crossed that I get to be unique . . just let them grow!

Vic is doing well on the groin tumor. He says that the core needle biopsy actually hurts worse than the tumor! He spoke with a neuropathologist at his job today and worked into the conversation his (Vic’s) condition. The neuropatholgoist gave Vic a name of a surgeon who he would trust doing this surgery. So that’s Vic task tomorrow . . .get an appointment!

Looking forward to a quiet weekend, praying that we get the snow the weather forecasters are predicting.

For those of you who live in snow country, you probably think I'm crazy. I am. We lived in Eastern Washington (46" snow average each year) and I actually miss having snow. The only problem with Seattle receiving snow - no one knows how to drive in it! They will leave their cars on the side of the freeways because the cars are rear wheel drive or they don't have chains. We found it pretty funny the first time we saw this. . .I'm sure those who left their cars didn't.

A glad heart makes a healthy body, but a crushed spirit makes the bones dry. (Proverbs 17:22). Let's go see a comedy!

Christmas Story

2008-12-09T11:09:00.000-08:00

When four of Santa's elves got sick, the trainee elves did not produce toys as fast as the regular ones, and Santa began to feel the pre-Christmas pressure.

Then Mrs. Claus told Santa her Mother was coming to visit, which stressed Santa even more. When he went to harness the reindeer, he found that three of them were about to give birth and two others had jumped the fence and were out, Heaven knows where.

Then when he began to load the sleigh, one of the floorboards cracked, the toy bag fell to the ground and all the toys were scattered. So, frustrated, Santa went in the house for a cup of apple cider and a shot of rum.

When he went to the cupboard, he discovered the elves had drunk all the cider and hidden the liquor. In his frustration, he accidentally dropped the cider jug, and it broke into hundreds of little glass pieces all over the kitchen floor. He went to get the broom and found the mice had eaten all the straw off the end of the broom.

Just then the doorbell rang, and irritated Santa marched to the door, yanked it open, and there stood a little angel with a great big Christmas tree.

The angel said very cheerfully, "Merry Christmas, Santa. Isn't this a lovely day? I have a beautiful tree for you. Where would you like me to stick it?"

And so began the tradition of the little angel on top of the Christmas tree...

=============================================

Did you watch the Front of the Class, the Hallmark Story on CBS Sunday, Dec 7? If you didn't, I highly recommend finding it online, your library or purchasing it.

I usually don't watch these sappy type movies, but this one kept me engaged. I guess it's because of what I am going through right now - I needed a "think positive" movie. And what I am going through seems so inconsequential to what this young man went through in the story. He persevered; didn't waiver in his faith and never lost site of his goal - to become a teacher against all odds of Tourette's.

Today is a quiet day after a long night. Now that I am finished with chemo, I have the time table down. Shoot dang!

Don't read anymore if you don't like TMI.
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The chemo and anti-nausea meds cause constipation for the first few days. When you just get to the point of rectifying the situation, i.e., laxatives, oatmeal, fruit, etc., the diarrhea hits. There is a fine balance between getting the two under control. Unfortunatley, I thought I had it figured out and was just so sure that I had passed (tee hee) with flying colors on not landing too much on one end of the spectrum.

Note to other BC survivors: Keep a list of which meds cause constipation and diarrhea. Keep laxatives and Immodium on hand. And pray that you find the balance PDK.

Go with the Flow

2008-12-08T09:54:00.000-08:00

My body wants two naps a day and then to bed early. I'll let it have it's way with me. No need to fight it.

Tonight is a city council committee meeting and my backup for taking the minutes isn't available. I will see how I feel later this afternoon and if I can go in. Why do we let guilt talk loudly in our lives?

My brain and fingers aren't working too well so they ought to be interesting minutes if I do go in. Luckily the meeting is recorded so I can refer to this for questions. We'll see. I'll have to assess my driving skills as well :-).

At the last treatment, the Onc Nurses said I needed to do or buy something to celebrate completing chemo. I told them we purchased a new washer and dryer - the front loading style - and I was excited about that. They thought it should be something more personal. I had to chuckle - we'll I'm paying for the cancer treatment, isn't that enough?

There is something that I have wanted to do for the past 35 years and it looks like it might happen in 2009! I've always wanted to go to Nebraska in late Spring to revisit my grandparent's home and small town, as well as do some genealogy. Vic agreed! I am so excited about this . . . it is a goal that would keep me going for awhile.

Thank you for your continued support of emails, phone calls and comments on this blog. God bless you all!

~Renee

Stop please!

2008-12-07T09:16:00.001-08:00

nausea before you wake at 5 am
nothing will stop it

can't eat anything
taste buds are revolting

anti nausea meds
more sleep

nausea before you wake at 9 am
nothing will stop it

Last Chemo Pics

2008-12-06T07:11:00.000-08:00

Christy came to the last chemo to see what I had gone through. It was nice to have her there as it made the time go by fast. Thank you Christy!

We have a pic of Vic in his "position", the hard chair next to the chemo recliner chair. He has been a wonderful support and my Rock during this. He would often rub my feet, which is a dream!

I received a graduation song - can't remember the words but something about side effects, including diarrhea. Dr. Pinder is in the green shirt. The nuns are Mary Ann and Jill who are actually Oncology nurses. They are a hoot. . ..just part of the craziness of saying goodbye. Sweet Cory is the other oncology nurse next to my chair.

It was a pretty emotional and high anxiety visit for me on this last chemo. All the fears of if we did enough to kill the cancer cells, getting the port out by the surgeon, etc. etc. where floating in the brain. It is hard to keep a positive mental 100% of the time. We do our best, but sometimes you just have to address those fears. Otherwise, they grow bigger than they really are. That's why it's good to NOT tell cancer patients to think positive all the time. We need to work it out.

Dr. P confirmed that I did no harm IF I had taken the supplements before and during Chemo #3. She said that since we had reviewed the list, she was okay. She had removed the ones that would cause trouble (high dose of Vitamin C is what I can remember). Whew! I did volunteer to come in for a few more treatments if necessary.

Did you know that there are no "markers" for breast cancer. Only if you get to metastasis do the markers come up. Please click on the link above. We need more research on these markers!

We did talk about my fears of metastasis since I've read about women who have had my same size and grade of tumor who are now with brain cancer. I do agree with her that quite a few of the metastatic women do participate more on the online support groups. We should create one for those that are Stage 1 to support each other with positives and decrease the negatives.

I asked Dr. P when I should call her if I have an ache or pain - a sign of metastasis. She said that if Tylenol and rest do not relieve the pain after a few days, then I should call. Even if it's to put my mind at rest.

I will also see her every 4-6 months, reviewing blood results. I'll have my first breast imaging 4-6 months after radiation is finished as radiation causes some changes in breast tissue and causes some inflammation so imaging is not very accurate.

Now is the time to schedule a meeting with a new Radiation Oncologist. I'm still not 100% sure I want to do this. But, I need to hit the Triple Negative Breast Cancer with everything there is. I did question why radiation is needed - wouldn't the chemo kill everything floating around? Dr. P said that the radiation targets the tumor site Chemo works best on microscopic deposits of tumor cells throughout the body. If there are any cancer cells remaining, one of the most likely would be in the tumor area of the breast. Radiation sterilizes this and can help to prevent second cancers.

I am so glad that this Segment 2 of 3 is done. I've come out of the chemo with my eyebrows and eyelashes intact - a little thin, but they remained. My fuzz is growing and I have about 1/2 inch in many places . . .white and curly! My hairdresser should be happy for some curl/body.

Having chemo is sort of like morning sickness, drinking too much and a touch of the flu all rolled into one! The actual "getting chemo" is really pretty easy. This morning I have a little nausea and need to go back to bed for a nap already.

Whoever and wherever you are, thank you for reading my thoughts and being part of this with me. I hope that if you are having to go through a breast cancer journey, that my words have validated your concerns and fears so that you feel "normal". And that I have given you some things to ask your doctors about, more importantly!

Let's see what we learn with Segment #3 - radiation!!

Hugs and peace to you and your home!

~Renee

Last Chemo

2008-12-06T07:08:00.001-08:00

Chemo #4, Day 1 FINAL

2008-12-04T18:24:00.000-08:00

Chemo went well today. Christy came and sat with me and Vic watched Courtney.

The nurses and Onc put on funny hats and two of them were dressed as nuns to sing me a graduation song. It was an original song - something about a specific side effct - diarrhea. It was pretty funny.

We went to Lowe's and Costco afterwards. Now I'm crashing . . . never had this immense need to sleep.

More tomorrow (hopefully) with pics.

Thank you all for your support and prayers!

~Renee

BINGO!

2008-12-02T20:51:00.000-08:00

Vic has a B-9 tumor called Schwannoma. Benign! Yeah!!!!!!

He hasn't talked to his doctor yet, but we believe it will need to be removed. We don't anticipate having the surgery until after January 1st. How does Vic know it's benign? It really helps to work in the pathology department where the biopsy was performed. He just found the resident who read the slides, who was willing to tell him the results.

This will give us time to replenish our Flexible Spending Accounts (FSA). Luckily, my open enrollment for insurance and the FSA ends December 12th. Vic's been tasked to figure out how much money we will need to pay for this surgery. That's hard to do!

Thank goodness for my health insurance. We picked up the medications for this round of chemo. Cost would have been $640. . . .we paid $34.

Stress is high as I have a couple of projects to wrap up at work before the next chemo. Last week was a three day week due to the holiday and this week is 2.5 days due to the biopsy yesterday. I'll get it done, but I will be so happy not to have to plan my life around chemo and the "feel good" days. I'm sure my co-workers will be happy too!

Daughter Christy is joining me at chemo on Thursday - she wants to see what it's all about. Grandpa Vic will have Courtney Jean (age 5) while Christy is with me. I suggested that the two of them go clothes and shoe shopping. For some reason, he didn't think that was a good idea.

Talk to you in a couple of days!

Waiting Game (again)

2008-12-02T06:39:00.001-08:00

Vic's procedure went well yesterday, no problems with the actual biopsy procedure. Now we wait for the results.

It was a long day, in fact, Vic asked to leave early. He had enough. Doctors wanted him to have 4 hours bedrest after the procedure. Why? I'm not sure. But after Vic woke up from his Percocet induced nap, he said enough, buzzed for the nurse and got dressed.

What a sweet nurse, too! She asked me if I had breast cancer. Then she asked what kind, "The 2nd most aggressive". "Oh, not Inflammatory Breast Cancer"? No, thank God and it was found at Stage 1.

Nurse Challie went on to say that her girlfriend had IBC, but her doctor told her it wast nothing. A year later, the skin was still thick and tender, so the friend went back to the doctor. It was at Stage IV - a stage none of us want - and she died a short while later. Ladies! Listen to your bodies. Insist that your doctor do a test or procedure. If s/he won't, go to a second doctor. This isn't a time to be afraid of hurting your doctor's feelings by going to another doctor!

Nurse Challie looked at me square in the eyes and said, "Stage 1?! Oh, your time on earth is not finished. . .there are more great things for you to do. Why do people that are so sweet and those that would be great friends get cancer?" It was just the thing I needed to hear.

We talked about radiation a bit and my concern that it really isn't necessary - will do more harm in the long run. This was all while she is removing Vic's IV and checking his body parts. "What's one more month of a short doctor visit to ensure that a rogue cancer cell isn't still there to cause havoc? You've been through the worse - surgery and chemo."

Whew! That's all I can say . . . God putting a voice of reason in front of me?

We should know by Wednesday the results of Vic's biopsy.

Best of luck to my cyber cancer sisters, Sue, during her first chemo today and Sharon on her next chemo on Thursday! Many prayers and thoughts are being sent your way.

~Renee

Oceano

2008-11-30T21:02:00.001-08:00

There are three things I look forward to when visiting Ocean Shores. . . . Galway Bay Irish Pub, Gorgonzola Cheese Tortette and the ocean. Unfortunately, these three things weren't meant to be this trip. Oh, well. Whatever. (just for you Christy).

Not sure what caused the stomach to flare up, but I wasn't feeling all that well to enjoy a Forfar Bridie at the Pub. I enjoyed the soda bread, though!

What is a Forfar Bridie you ask? Here's from the Pub's menu online:
A Scottish dish invented by a Forfar baker in the 1850’s. Chopped steak, flavored just right with sautéed onions, carrots, potatoes, garlic & herbs, then baked in a puff pastry & then covered with our famous whiskey cream sauce.

It was nice to watch Vic dive into a really good looking Irish Stew and enjoy a dark ale.

We purchased the last Tortette at the Ocean Shores IGA store (the only grocery store in town) and I looked forward to enjoying this scrumptious appetizer before heading to the Pub. This was before the stomach issue too. When I opened the package, I could see mold on the bottom. I believe Vic was trying to convince me that the blue was part of the Gorgonzola, but I just wasn't buying it. The blue in the cheese isn't fuzzy. :-)

I have looked for the Gorgonzola Cheese Tortette locally but have been unable to find it. The company's website indicates that our local stores should carry it, so next time I'm in Albertsons or Safeway, I'll talk with the cheese buyer.

The fog would not lift at all on Saturday. No view of the ocean from our cozy hotel room with a view, but it was great to fall asleep to the sound of the ocean. Yep, it's winter and I kept the window open a bit just to hear the sound. It's so relaxing and restorative to me.

The rooms without a view were special priced at $60. I thought we should argue that the more expensive room with a view should have been discounted as well since there wasn't a view .

I don't recall ever seeing this when we lived in California, but driving on the beach is allowed at Ocean Shores. It's great for those days when it's too cold to be out walking on the beach for any great length of time. You can sit in your car and watch and hear the waves! We were able to spend a little time on the beach today before we left. No fog, but it sure was cold. I may have some pics up later . . . have to see how they came out on Vic's digital.

Vic is now at the AC/DC concert with our 14 year old grandson, Cameron. He doesn't expect to get home until midnight since he is driving Cam back home. . . .about 45 minutes north of where we live, but the concert is about 30 minutes south of us. You do the math.

Grandpa was Cameron's buddy for many years, so it's nice to have these two do something together. Cameron's step-father, Tom, became his buddy when Jen and Tom were dating . . . Grandpa sort of took a second place. Not that this is bad - we were thrilled that the grandkids liked Tom and he is a positive influence in their lives.

It has been 5 months since the diagnosis of Triple Negative Breast Cancer (June 30th). It seems much, much longer than that. Maybe because we were dealing with Vic's cancer, pheochromocytoma, in April?

Vic checks in tomorrow at 7 am for his biopsy on the "thing" in his groin, which means we leave the house at 6 am. Ambien is going to be my friend tonight! Hopefully Vic will recover his lost sleep when he's under the anesthesia.

Please join us in prayer that whatever this thing in Vic's body is not anything serious. We could use a break on this cancer crap.

Peace, over and out!

~Renee

Ocean Deep

2008-11-28T19:38:00.000-08:00

I am amazed, yet scared, at how well I do feel. Am I taking too many supplements and vitamins that it is countering the efficacy of the chemo? Or are the supplements and vitamins helping me to feel so good?

Thursday, December 3rd, will be my last chemo. Yeah! While I am excited to be over with chemo, I do wonder if we've done enough with the chemo drugs to kill any cancer cells floating around. Should I have more? Should I have a different drug? I am scared to not be going for more treatments. Is four really enough? Fear is creeping in, friends, and I'm not liking it.

I also wonder if the chemo is working. How does the oncologist know that it is? The tumor is gone, so they can't "view" it with MRI or ultrasound to know if it is shrinking due to the chemo. As far as I know, no "markers" have been mentioned. Down the road, how will I know if the cancer has come back early enough so it can be treated? This is all so confusing. I hope I have more than a few minutes with the oncologist next week.

Vic's biopsy is on Monday, December 2. He will have conscious sedation so that means that he needs a driver (me). He will go in at 7 am for prep, then the actual biopsy will be about 9 am and will take 1.5 hours. We then wait for the anesthesia to leave his system before he is released.

The "thing" is not 100% solid (tumor) nor is it 100% fluid filled (cyst). . .kind of a combination of both. The vascular is running through it. As Vic says, "No need to worry about it until there is something to worry about"! Ha! He forgets who is he is dealing with - me!

Vic and I are going to the ocean tomorrow for some long overdue R&R. I am hoping that we can just relax and enjoy ourselves without cancer being thought about. Wish we had more than one night at the ocean, but I'll take what I can get!

On Sunday, Vic and our grandson, Cameron (14), are going to an AC/DC. How cool is it to have a grandfather who likes to go to rock concerts? I hope Cameron can appreciate the uniqueness of this.

Thanks for reading and listening to my fears. lol

xoxoxxo

~Renee

Mind Games

2008-11-25T18:02:00.000-08:00

Made some yummy steel cut oats the other day, doctoring it up with raisins and cinnamon. Later, went to microwave something and this is what I found.

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Chemo brain? Old age? Lost my mind? Either way, it's pretty darn funny!

Looking forward to spending Thanksgiving with my girls, son-in-laws and grandchildren. We will be cooking the bird and I'm so thankful that nausea is not around to prohibit this.

My mother is one of 12 children. With all the aunts, uncles, inlaws and cousins, we used to rent out the hall at our church in Fresno. What great times and memories I have of those times. Wonderful food, fun playing with the cousins in the church (without anyone telling us to behave) and just seeing everyone. I miss those times. I hope that we are giving our grandchildren some wonderful memories.

Hope your Thanksgiving is a blessed one!

~Renee

I Am I Said

2008-11-22T15:14:00.000-08:00

Oh what a beautiful day! Did you EVER think you would hear those words come out of my mouth or show up on this blog?

We went to breakfast. I worked at the office for a few hours. Then watched the Washington State University Cougars beat the University of Washington Huskies in the Apple Cup. Go Cougs!!!

As you can tell by the previous blog entry, this journey gets old. It's a trip I never asked to go on nor would I wish on my worst enemy. I never would have thought breast cancer for me. Lung cancer, maybe, given that cigarettes were my friends for 25 years. Thankfully, I have been smoke-free for 12 years!

The first chemo was hell and the lowest of lows. This past week has been a different kind of hell, but I still came out alive. Everything in this picture was affected this time by the chemo drugs. The chemo fog has increased and the ability to multi-task is decreasing as well as the ability to find the right words.

I strongly believe in taking Glutamine and other supplements to boost my system and repair the damage done by the chemo drugs. After the first chemo hell, I did a lot of research and brought this "plan" to the Oncologist for her blessing.

What is frustrating is that no one in the medical field offered any education on supplements and vitamins! Why not? When I brought the suggested list and the reasons why I wanted to use the supplements/vitamins to the oncologist, she agreed with my reasoning.

It is possible that I was not taking enough glutamine and thus the gastrointestinal attack. Before the 2nd chemo, I started taking 20-30 grams 3-5 days before and continued until I felt better. I don't believe I did this for the third chemo. Definitely will do it for the 4th! Here's more information about glutamine.

It was so nice to do something normal - going out for breakfast on the weekend. I didn't give a thought if the cooking smells were going to affect me. In fact, I sort of forgot about them! Doesn't mean I was able to taste all of the food, but I ate and the gut didn't revolt.

The restaurant is right across the street from my work. I felt good, the brain was pretty clear, so I worked a few hours on a project. My fellow breast cancer coworker arrived and it was good to see her. She has an 8 hour reconstruction surgery this Monday and it was great to give her a hug and wish her well. We've talked before about which one of us has it worse on the cancer journey and we each feel the other does. :-) I had a lumpectomy, chemo and will do radiation. She had a mastectomy, no chemo or radiation, and now reconstruction.

Cancer is a wake up call to take a look at your life. It's like any other major catastrophic life event, you promise yourself that you'll make changes. How many of us keep those changes - make them a habit?

I guess I'm a little reflective right now as we head into another "unknown" situation with Vic. Almost deja vu. What did I tell myself I would change in my life during Vic's adrenal gland tumor/cancer this summer, but haven't? What can I do to make these changes a habit? Or is this something to keep as a goal once treatment (chemo and radiation) is over?

Whatever the answers are, I need to remember this: I am Renee. I am not Cancer.

Peace and blessings to you!

~Renee

Chemo #3, Day 7

2008-11-19T15:20:00.000-08:00

Turnabout is fair play. (American)
Something that you say which means you will do something that someone else has done because this is fair. You cook dinner tonight, I cooked last night. Turnabout is fair play.

I am sick of me. Sick of this cancer, sick of being sick, sick of having a focus on my life that I don't want. I want to look outside of me. And you can help!

Since you are reading this, I want to hear from you. Remember, Santa is coming and he knows who is naughty and nice and who doesn't respond. Turnabout is fair play. Tell me the two top great things in your life. If you want, tell me one thing that isn't so great. Tell me one funny you did this week or month. That's just 3 or 4 things. Come on! You can do it!

You can do this anonysmously, anonysmously but typing your name at the end of your entry, with a Google email account, or just your name.

I look forward to looking out instead of in. . . turnabout is fair play.

Chemo #3, Day 6

2008-11-18T17:18:00.000-08:00

I learned me a new word today. Okay, two words: Psychomotor Slowing. Pertaining to motor effects of cerebral or psychic activity; movement produced by action of the mind or will. Well, the mind and will wanted to do things today, but the psychomotor was slow.

Here’s another new word: dysgeusia. Taste changes also know as dysgeusia, may occur with mucositis especially if the tongue is involved. Since the taste buds on the different areas of the tongue recognize sweet, sour, and bitter, these may also be heightened or distorted. Some people experience a metallic taste in their mouths when mucositis is present.

Here’s a nifty website for prevention of chemotherapy induced nausea and vomiting. Isn’t that a lovely phrase?

Can you tell I’m bored? I feel like I should be thankful for some things, health insurance, a good job, finding the cancer early, yada, yada, yada. Yet, I’m having challenges today finding the thankfulness. Isn’t it strange that when we are busy, and not bored, that our life just flies by? How often did I wish for some free time to get caught up on projects? Here is my “free” time but the brain and body's motor is so slow. Oh, well. This too will pass.

Today, again, has been a challenge to find something that I can eat or drink. I do feel weak because of lack of liquids and nutrition. I’m trying lemon water to help with the mucositis – so far so good; it’s staying down. Here’s what I tried to eat today. Remember I said I was bored? If you are reading this far, I am happy to share the boredom with you. Please, God, let me go to work tomorrow!

Muffin – what was that mystery flavor?

Green Tea x 2 – semi okay, not too nausea-inducing; all other herbal teas – gag!

Burrito – spiciness didn’t work; saved for Vic

Chicken/Cranberry Salad w/Saltines (Vic picked up at Costco). Not bad, not good, but it stayed down (well sort of)

Slim Fast – plug the nose and chug it fast

Peanuts, almonds, cashews – how weird tasting were those peanuts! I’ll never be able to describe it nor wish to experience it again anytime in the future

Soft sharp cheddar on saltines – not too bad, just ate it to get the calories, fat and protein. Would Saltines be the common denominator here? Hmmmm, have to think about that.

Quaker Baked Cheddar Snack Mix – the oatmeal squares were pretty good! Think I need another bag. Pretzels – ick . . slimy. How can pretzels be slimy?

Ravioli with spinach & mozzarella – What was I thinking? Cooked spinach? Barf-o; saved for Vic (guess he has a little bit of food to eat, eh?)

Apple with soft spread cheese – not too bad, but couldn’t eat the whole thing

Ham and potato scallop prepared by Laura and Christy’s loving hands – heating up right now. It sure looks good!

Praying for the strength to get dressed tomorrow to go to work. Even if I just sit there and stare at people, I will be around, well, people. As much as I love my cats, they just don't cut it on these days.

Hugs to you all!

P.S. I just heard from the oncology nurse. My goal is to drink a shot glass of liquid every 30 minutes - to stave off the dehydration. Now, she didn't say exactly WHICH liquid to drink, hee hee hee. But I believe I'll stick with the lemon flavored water.

Another tidbit of advice for all you cancer patients or caregivers out there . . . .make Jello and pour into an ice cube tray. Each "ice cube" is 1 oz. And that's all one has to get down every 30 minutes. No, we aren't talking Jello shots. I think I'll dial it back a bit and concentrate on the liquids.

P.S.S. Vic just got home and said his doctor should have the ultrasound results tomorrow.

P.S.S.S.
I've read this before, but now that I have cancer, it means that much more. Cancer Rant on Craigslist.com. Gotta love it!

Chemo #3, Day 5

2008-11-17T15:44:00.000-08:00

Gastrointestinal issues galore . ..more than you want to know or read about. Let's just say, that I have been in bed, the recliner, couch or bathroom only to repeat. We did go for a walk at noon just to get the stomach to settle down and maybe stimulate the appetite . . . and made it around the short block sort of. I thought I had ran a marathon!

We knew that the chemo can have accumulative affect, but since #2 went so well, we didn't suspect it was going to be like this. The cognitive stuff is amazing to feel and watch from this end of the camera. Is this what Alzheimer's or dementia feels like?

I am having trouble eating and getting anything down - everything tastes terrible. I need some nutrition in order to get well. Even liquids taste yuck. It's been a challenge today, to say the least. Vic did work from home today. Bless his heart he's been trying to give me things to drink/eat without much success.

I guess this is just one of those days that happen in this journey. It could be worse. But it still sucks.

Vic has his ultrasound tomorrow after work. Not sure how long it will take to receive the results. We are praying that it isn't anything!!! Please join us!

Chemo #3, Day 4

2008-11-16T10:10:00.000-08:00

Except for waking up at 3:30 am - it was more like 2 am - and having a massage, this is pretty much the same as before on Chemo #2, Day4! Just the side effects feel triple in strength. . . . more cognitive delay, inability to think and type without zillions of errors.

Marinol making me feel extremely weird.

That's it for today, I think.

Evening

This totally sucks. I am not going to clean upmy typos because it shows how my brain is working. Which is 't well. This totally sucks! I am totally useless, an't think, can't bput two entences togetr to make a complete paragraph in trying to talk to Vic. Vic mau hae t stay home with me tomorrow because it is that bad.

I forget to eat but then nothing I want to eat tastes good. I forget t drink which I have to do beause of one chemo drug will kill my body parts. Okay not really kill, but my bladder I don't want affected.

To go from such a high feeling week of Week# 3 for Chemo 2, this is the botom. Yes, I am thankfl - it could be worse. It culd be the nausea and crap from the first Chemo. But this is't fun either. One more treatment that's all I hadve. But it doesn't feel like I'm going to make it t then.

I am thankful for Laura and Christy cooking so many meals. I hope to be able t taste them soon! Given Vic's "uncomfortableness", we can use some help if you live near by. Please see link in upper right of page. Thanks, gang!

Hope to talk to you coherently soon. Peace

Chemo #3, Day 3

2008-11-15T20:16:00.000-08:00

Here's my stockpile of supplements and RX for nausea and stomach. A little bit, eh?

Lunch, Breakfast & Dinner

to the right

Rough morning with aches from the Neulasta shot, stomach still messed up and nausea. Lots of hot and cold situations. Too much clothes on then too little. It's a never ending battle the past few days on how to get the temperature correct. I think it is the steroids doing it.

The finale was the taste buds are going, going, gone again. Wasn't that too fast compared to the other 2 treatments? It's a challenge to find something to eat. No eat and no drink, makes fatigue and a cranky patient.

Laura is my daughter Christy's friend and lives in Pullman (east side of Washington - 5-6 hours away!). She drove over yesterday and cooked up about 30 meals at Christy's house for us. We are so blessed and in awe that this young lady would sacrifice her time to do this! Thank you, thank you Laura and Christy!

Here's a pic of us 3 with Christy's two daughters and Laura's son.

That was a lot of activitiy and company, I'm dead tired, but not tired enough to go to sleep. It sure was good to see the family!

Chemo #3, Day 2

2008-11-14T20:22:00.000-08:00

Things are going okay . . .little nausea, stomach messed up still. Received Neulasta shot this afternon and afterwards, we went shopping at Trader Joe's for Thankgiving items. Felt okay, just a little crummy.

Found out that they do not give the Neulasta shot after my last chemo in December. I am NOT going back into a neutropenia! I've asked them to receive a preauthoriziation from the insurance company. Their argument should be how low my white blood counts got without the shot. I don't want to spend Christmas all yucky.

I'm surpried that the Neulasta is working so quickly! My chest bones are hurting already.

Taste buds are fading fast. I think this is a first!

Here's to having a good night's sleep! Vic and I both need it!

Cats

2008-11-14T05:22:00.000-08:00

4:00 am - Vic's cat starts meowing. He has neuropathy in his back legs due to diabetes and can't jump on the bed. Tho we put a step stool next to it. So he meows to let Vic know - and unfortunately me too - that Vic is late for his morning feeding. Got to get one of those self-feeders with a timer!

Here's my cat . . . .he likes to jump on the bed and snuggle. No meowing for him!
http://whiskersmr.blogspot.com/

Chemo #3, Day 1

2008-11-13T19:56:00.000-08:00

Afternoon
Successful chemo treatment – no problems with the port access. We were both very tired since we were up late last night and woke up at 4:30 am. Before treatment begins, they give me two Benadryl and three Zofran – both sleep-inducing drugs. Needless to say, it was hard to keep the eyes open.

Since the taste buds have come back quite a bit, we stopped at Jimmy Mac’s to have my favorite meal – steak with blue cheese. Oh yeah! And their heavenly fresh rolls with honey butter. Yum, yum, yummy! Calorie-laden and high fat meal, but who cares. I don’t eat enough during the first week, so it makes it up in my mind.

As hard as I try to give my fear to God and push away the negative thoughts of recurrence, the fear of it is always lurking in the back of my mind. Women who have had my same cancer and same treatment – lumpectomy plus radiation and chemotherapy - have gone onto metastasis. No one dies because they have cancer in their breast. They die because the cancer either spreads or comes back somewhere else (bones, liver, brain). When it reaches other organs (metastasis), it makes treating the cancer that much more difficult to treat. Some people live a long time with cancer in other organs, but have frequent testing and chemo. I think most, if not all, cancer patients think about this.

Evening
My stomach is a mess. Not sure if it still is the steroids or if it is nausea . . or maybe the lunch? I’m still full! The steroids are taken to prevent allergic reactions to the chemo drugs. I don’t think I will have any. If I do. . eh! So, I’m stopping them. Gonna try TB's recommendation (wink).

Vic had a MRI scan before his surgery in August. Results came back with something in his groin area and liver. Surgeon for the adrenal gland cancer said not to worry about it. Vic has recently had some pain in the groin – but didn’t tell me! Didn’t want me to bet worried with all that I have going on. People really need to realize that I can handle bad news . . . it helps me get out of “me world.” Vic spoke with his internist today and he will have an ultrasound to see what is going. Please pray that it isn’t anything!

Twas the Night Before Chemo

2008-11-12T23:08:00.000-08:00

Sorry, was thinking about Christmas and trying to plan when I can go shopping for it. Oh, wait, that sounds like a planner to me. Yes, I work in a Planning Department, but I don't plan. Now isn't that just wrong? I used to be a Wedding Planner in Fresno at a couple of great churches. That was a fun time. I enjoyed the creativity and problem solving skills that I developed. I was so confident in life on the outside and to others, and sometimes I could fool myself. Life handed too many lemons at WSU and I bought into it. It only took me 5 years to get past the PTSD by owning my own antique store and being self employed, only to have them start again at the bank. Glad I don't work there anymore. It was blessing to be laid off from a job for the 2nd time in 2.5 years. Can't say it enough, God had his hand in this position with the city. I believe in God, pray to Him even tho I don't go to church. I miss the church community. I miss my dad.

Just some random thoughts before chemo.

It's 11:15 pm. I'm tired, but have had a nasty stomach ache and sweats since taking the morning steroids. It never got better through the workday despite two deadlines. I could have tried to pass one off to a co-worker, but didn't. Stubborn? No, wanted to spare my co-workers the usual extra work that this week brings for them.

After taking the 2nd does of steroids, the stomach is even worse. This is worse than the nausea after the 1st chemo. At least with that, I had anti nausea pills and would go to sleep. I took one of those MJ pills and it killed the ache somewhat. I should have gone to bed when it eased off, but noooooo, I decided to stay on the Net to read other people's blogs and comment.

My Rock is the best. I've noticed that he enters into a "mode" the night before chemo and continues until it appears that my energy level is up and no weird side effects are happening. This mode is his "caretaker" mode. And he does it with no complaints.

I woke up this morning to find he started our chemo chart. He highlighted the steroids that I was to start this morning. He picked up the anti nausea pills tonight from the drug store without being asked. He just did it. I wasn't going to ask him anyway as I was going to pick them up tomorrow on the way to chemo. He cooked dinner - concerned about the odors, searing the Jamaican Jerk chicken outside on the BBQ. He washed dishes and didn't want help. He's the best.

But he is in bed telling me to shut it down. So I will obey him. I do this sometimes. And sometimes I argue. That's another rambling thought so I'll stop before I type whatever comes to the top of the brain.

Yep I did write "strart" when I meant "stop". Okay, I wrote "strat" when I meant to write "start". I don't believe in chemo brain for 2 out of 4 treatments. Not possible. It's the stomach ache.

Many, many blessings and good health to you and your house!

~Renee

P.S. Have you had your Vitamin D levels checked? Have you scheduled your mammogram?

Chemo #3 Coming Up

2008-11-11T09:38:00.000-08:00

One of my job duties is taking the minutes for City Council committee meetings. Something which I haven't been able to do since August? September? It feels like forever, but then this cancer journey feels like it has been forever too.

Last night was my first time for taking the minutes and it felt good to do it. . even tho I was a little rusty. Given that I usually come home so exhausted at 5 pm, I was definitely tired last night and this morning since the meeting didn't adjourn until 7:45 pm. But it wasn't a horrible tired.

Today was a good day again and very busy (for me). Even tho I was tired, it was great to meet up with Toni and her friend for lunch (Toni is one of the followers of this blog and a great supporter!). Toni and I have been on-line gin-playing friends since about 2002 or 2003. She flew to Washington from California to visit her childhood friend and it was great to meet her in person. Thanks for lunch and a great fellowship time!

After lunch, I had the pleasure of a blood test to ensure that my counts are where they should be in order to have Chemo #3 on Thursday. I also had my first check of the surgical area and things looked good in that area. I forgot to tell the nurse about the eye pressure after the two treatments. Will have to remember to tell the doctor and oncology nurses on Thursday.

I was able to get in for a massage after the pre-chemo check. . . and life is good.

I wanted to share with you some other blogs I follow. These women also have Triple Negative Breast Cancer (TNBC). Their blogs are on CarePages, which requires you to sign-up in order to read them, but well worth it. Even tho you don't know these ladies, they can certainly use words of support and care - so please leave a note on their blog.

For those prayer warriors, please pray for every TNBC previvor in the world.

GonnaBeatIt
CarynCenter

Hugs to all! Be back to you after chemo on Thursday.

Chemo 2, Day 16

2008-11-07T21:08:00.000-08:00

Life this week has been good. If I didn't look in the mirror and see my shaved head, I'd never know that I had cancer. I feel almost normal! Well, except for the nausea reactions to smells and odors and fatigue. :-)

I've had a few nights of not being able to turn the brain off - thinking about the next chemo. We had a fairly good experience last time so I have no idea why it's coming up at night.

I do notice that now that I am taking 20 mg of Melatonin, I toss and turn for 3 hours. I've seen 1:15 am on the clock more times than I want. One would think that a higher dose (3 mg is normal) would make me sleepy. It did the first two nights.

My hair is still sticking around - I'm not 100% bald. Quite a few strands fall out when I shampoo or run my hands through it. I got tired of this and last Saturday I removed those slow moving hair strands with duct tape. Yep, that's right. Duct tape. I have alot of white hair. In fact, some have grown! Go figure. I'm thinking I should dye it . . .maybe bright pink?

I continue to struggle with what to wear on the head for work. I like hats but they are too hot to wear at work. I feel like an old cancer patient with scarves that are tied behind the head. And I'm a clutz as to doing some fancy work on tying them any other way. I have found a lady who makes pre-tied scarves and bandanas. I wear this one the most. In fact, she made some larger ones for my large head. I highly recommend Mary Ann at CJ Hats!

Hope you have a great weekend!

Chemo 2, Day 13

2008-11-04T20:03:00.001-08:00

It is truly amazing how good I do feel. It is truly amazing how quickly that can change.

On Sunday, Vic and I each made a soup to eat and to freeze and both had onions. Vic prepped the onions and put my portion aside. I felt great all day and started my soup about 2 pm. Soup was on and flavors melding at 3 pm, when all of a sudden, nausea rolled in. Okay, didn't roll in . . . .pounced on me. The onions were making me nauseous! And here I had just sauteed them and was feeling fine! Go figure.

I thought I had gained back my taste buds yesterday. Whooo weeeee, let's get some real food, honey! We went out to dinner to Mongolian Grill . . nothing fancy, real forks and close to home. When I got near the onions, guess what happened? Yep, nausea, but not bad. Just breathed through the nose and moved on. However, half way through eating dinner, a cloud of fatigue rolled on me (not pounced) from the top of my head and slowwwwwly down to my toes. It was the weirdest feeling. Luckily that food re-warms well.

I will take these sporadic nausea and fatigue clouds, given where I was after Chemo 1, Day 12.

Lesson learned - Insist on receiving Neulasta after your first chemo. Neulasta is expensive ($4,000-$7,000) but the difference in your recovery from chemo is like night and day! Besides, what does it cost to spend the night or two in the hospital for neutropenia?

Cancer and the treatment sure teaches you to live one day at a time. For those who know me, truly know me, that is not in my natural nature. I am at peace with not being able to plan too far in advance and surprisingly, rolling with the punches.

Blessings to you and yours,

~Renee

Thank You!

2008-11-02T16:40:00.000-08:00

Jen, Christy, Kim, Dawn, Toni, Val, Kathy, S.F., Laura, Sandy, Stephanie, John, Mike, Chuck, Mom, Bill, Mary Ellen and Aunt Peg

I so appreciate your continued words of encouragement, prayers, and support!!!!!

Thank you Sandy for the darling cup and pens!

Thank you Darcie, Tamie, Elizabeth and the anonymous City of Auburn employees who donated their sick leave so I can continue to have a paycheck.

Thank you to Carolyn, Bobbie, Heather, Elizabeth, Darcie, Kirsten and the other Planning & Building Department staff for stepping in to cover my job duties.

Did I forget or miss your name?

Please email me . .. chemo brain is really true!

Chemo 2, Day 9

2008-10-31T20:32:00.000-07:00

Things are a-okay here!

Looking back at my notebook for where I was on Chemo 1, Day 9 - I am so blessed to be doing so well. That was the night of the shaking chills and fever . . . and the beginning of my stubbornness of NOT going to the hospital. Who me? Stubborn? Say it isn't so!

I continue to have "issues" in certain areas but all are manageable. Due to these issues, I haven't worked a full 8 hours a day this week. It just gets frustrating at times to "have" to deal with them. I refuse to get into the "why me" because it serves no purpose. It is what it is - deal with it. I can say that now, but there were a few times right after diagnosis and surgery that I thought I would not stop crying.

Tonight has been an emotional night for me. Yes, there was/is crying. Imagine! One of the members of my on-line support group was just diagnosed with cancer cells in her cerebral spinal fluid. She has the same subset of cancer as I, and four years after her treatment was finished, they found the cancer in her lungs. Now this. Please pray for Caryn. She is a tough fighter and her faith will get her through this to NED (No Evidence of Disease).

I heard from a high school friend tonight. It was the opportune time that I received his email. If you know me, but haven't made a blog posting or emailed me, please do.

Hugs and peace,

~Renee

Chemo 2, Day 8

2008-10-30T20:56:00.001-07:00

Got to work at 8 am Yeah!!! But, booo, the nausea and intestinal distress hit at 10 am. I hung out as long as I could by using the "break through" nausea meds. I finally gave up at 11:30 am and went home for 3 hours. Needed to get the big gun meds out and calm the stomach down.

At one point, I was contemplating sitting out in the lobby asking someone to get my supervisor, to get my items and walk me to my car. Luckily, I was able to muster up the energy to gather my own things and get home. After the 3 hours, I was able to go back to work in the afternoon.

Today was one of those days where I just hate this blasted cancer and it's treatment . . . and all the crap I have to go through just to work and work with a clear brain! I know I'd be bored to death, but sometimes it's easier to deal with cancer and not have to work or go out in public. Think I can win the Lotto this weekend?

Chemo 2, Day 7

2008-10-29T20:48:00.000-07:00

Comparing this chemo to the first one is like night and day. I do still have nausea but no where near the level of Chemo 1. I did get behind on the 8-ball yesterday for anti-nausea meds so I could go to work AND think. Big mistake on my part.

Today, I took my time waking and getting ready as I really wanted to go to work without nausea. Eating, take pills, drinking, eating, taking pills and drinking. Taste buds are still kaput so I eat for texture. I can taste sweet and salt still. I ran by McDonald's on the way to work for a cheeseburger. The only thing I could taste was the pickle and ketchup.

Neuropathy is seriously burning my toes and feet. I feel like I'm at a luau and walking on the hot coals. Eeow, eeow, eeow.

Onc nurse said to take 10 grams of glutamine powder - which is 5 teaspoons (I think. I had it measured out but now have forgotten). I can add it any drink and gulp it down - just have to spread it out during the day. Onc nurse said to watch for cracking skin I guess it can be pretty serious - haven't had time to read up on it. I know the Onc nurse told me something, but I don't remember exactly what she said! This sucks.

The two newest side effects may be just one and something else. I am having nosebleeds. Oh yippee skippy. Since I'm heading into my NADIR, it is something to keep an eye on as it could be low platelets. Not claiming it per se, but just have to be aware of every little twitch in the body.

The second thing started today - severe back ache. Not sure if it came on because I was using a different chair at work, or if it is something else. Remember that every little twitch in the body means something to a cancer patient and their Oncologist. Tonight, the back has just been burning way too much.

Help! I'm on fire! My toes, hands and back are burning. This sucks.

Note to people I come in contact: Beginning tomorrow, I am beginning NADIR. No, it's not a religious holiday. It is when my blood counts go down and I need to be super cautious on what I touch . . .and need to keep my darn fingers away from my nose and mouth! Clorox wipes, here we come! I have no plans to go to the hospital this time around - and the Neulasta should have the White Blood Counts covered.

Oh well. I'm thankful that this 2nd Chemo is better than the 1st. Got to hang onto something! Me and my fired parts are going to bed. Love you all!!

Pass the Word

2008-10-29T07:02:00.000-07:00

Note from Triple Negative Breast Cancer Foundation. I received one of the It's A Wrap headcoverings and have included the pics below.

My name is Laurie Erickson and I am the CEO of a fashion accessory company located in Washington State. A few years ago I launched a program called Good Wishes scarves - a program where my company makes one, free of charge, silk scarf or headwrap for women experiencing hair loss. This program was borne as a result of an email I received from a loyal customer, Hillary, who bought hair accessories from my company. She wrote to our customer care address and asked if we had any products for women who are losing or have lost their hair. I replied no at the time, but offered to make her a scarf at no charge, in a color of her choosing. When her scarf was completed, we had a staff meeting and had a moment for this terrific woman, silently sending her Good Wishes.

After receiving her scarf, we communicated from time to time and I told Hillary that should she meet anyone along her journey, who might enjoy a Good Wishes scarf to please let me know and I would happily have our factory make one for her - she told me that her Good Wishes scarf had brought her comfort during her chemo sessions. At a subsequent Chemotherapy session, Hillary met a woman who learned of our flegling program and requested a scarf - we were so happy to know that our desire to give was becoming a reality.

I have really struggled to connect, to give, to share our scarves with women. It seems so odd to have the ability to give and KNOW the need is out there, but struggle to find the bridge to get that done. Fortunately, I spoke with Malaak Compton Rock earlier this week and she told me about TNBC - I was so happy when we spoke and I said "you're my Bridge!" - she was as always just lovely and helpful and I am absolutely optimistic. My head has been spinning with ideas and so I write to you here to help me spread the word. Its very simple. My company works with hundreds of different silks and cottons. I will give as much as I possibly can to the community of women who are undergoing or experiencing an event where she is losing her hair.

I have two options at this time; a scarf (which can be a bit cumbersome for some) or a headwrap called "It's a Wrap". I will send you one at no charge. We don't have these all up on our website yet at www.franceluxe.com, but I can send you swatches or a scan of the available fabrics at this time. My Dad actually went to our factory today to pick up hundreds of yards of fabric so we have tons of options to share.

If you or someone you know would enjoy either a scarf or an It's a Wrap - please email me at laurie@franceluxe.com and me and my staff will work to get it done for you.

Thank you and I look forward to working together with you to perhaps send some comfort to women from women.

Email Laurie, letting her know that you heard about the scarf from me or TNBCF. You can also call Laurie 888-884-3653. Here's the link to the It's A Wrap - you'll need to click on the Code # to view the fabrics.

Spread the word!

Chemo 2, Day 6

2008-10-28T19:07:00.000-07:00

I decided to tough it up and suck it up to go to work today. While I didn't feel 100%, I wasn't a 0% either as I was during Chemo 1. I felt "slower" in thinking, speaking and moving. Several times I had to read the same thing to figure out what I was doing.

The nausea would not leave, tho. It's still here tonight and I'm trying to get it under control. At work, I spent alot of time keeping something in my stomach and doing my best not to get sick. I didn't bring enough food - why should I since nothing tastes good?

I have a choice of staying on top of the nausea with meds and not go to work; or, go to work with nausea. Both are uncomfortable. And like pain pills, getting behind the nausea meds is a big no-no. . ..can't get caught up on it. But I am definitely going to try tonight.

Hair is still thinning - Vic does his nightly check and the shower/bath doesn't lie. I don't want to shave it all the way, so I guess I'll let it fall out as it is. The "strands" are less than a 1/2 inch.

Comparing this time to last time in chemo, we are doing much, much better.