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!


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