Thursday, April 30, 2009


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

Monday, April 27, 2009


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!


Tuesday, April 21, 2009


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!

Sunday, April 19, 2009

Tumor House is Closing

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.


Thursday, April 16, 2009


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!


Welcome to Cora and Alli, two new Journey Supporters!

Friday, April 10, 2009

Two Martini Lunches

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,


Tuesday, April 7, 2009

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!

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!


Thursday, April 2, 2009

1st Follow-Up UPDATED

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.