Final-E

.
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)

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

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

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

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

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

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

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

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!

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

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

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?

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