Deb notes...
Saturday, January 30, 2010
I survived Round Two on Thursday, but my hair didn't. The closest I came to crying about it was in the shower Tuesday morning before work. It just kept coming out, it wrapped around my fingers, clogged the tub drain strainer, and totally filled my comb. So Tuesday night I cut it off and my niece Melissa, buzzed my head down to 1/4 inch. I managed to get an 18 inch ponytail to donate. I am surprised how gray I am especially on the sides and back. Wow!
I'm back on lots of med's again, mostly steroids and a wide assortment of anti-nausea drugs. Sometimes they work, except I'm back to being an insomniac. I guess that gives me lots of time to start organizing our taxes and surf the Internet all night.
Anyway, I'm hanging in there and want to thank everyone for their support, prayers and positive energy. Peace, love and happiness! ~Deb
Monday, January 25, 2010
I'm feeling pretty good, just in time for Round Two on Thursday. Last Thursday, I went in for labs and they said that I had a low white blood cell count, so they put me on Ciprofloxacn and that seemed to help a lot. So much for that $3000 Neulasta shot!
My scalp is starting to hurt/tingle and I'm starting to shed a lot more than usual. Tomorrow night after Physical Therapy, I'm cutting my ponytail off and send it in to Locks of Love (sure hope they don't mind all the gray mixed in there - I've earned every one of them). I have been given a bunch of knit and fleece hats and some beautiful scarves (you women are awesome). I'm really not sure about getting a wig. A gal from the American Cancer Society is supposed to stop by when I am doing chemo Thursday and have me try some on.
Friday I met with my breast surgeon and found that I didn't need to get drained this time (third time was a charm!). She said that after consulting the latest Radiation Oncologist in the picture, they think that the risk of permanent lung damage outweighs the benefits, so I will NOT be doing Radiation!! That saves me seven weeks of going in every day, after chemo ends. So that bumps up my total hysterectomy - I may have a somewhat normal summer after all. <<happy dance>>
Chemo: One down, three to go. Have a great week/weekend! God bless...
Monday, January 18, 2010
New picture! Howard took this picture of me Wednesday, the day before I started chemo. I still have my hair, they say around 14 days it should start falling out. My Mom brought me some clippers so we can buzz it off. It sure will be different, I've had pretty much the same look for the past couple decades. I guess 2010 is a year of new beginnings for me. Hopefully, I'll get more fishing in!!
Before chemo on Thursday, I had a port put in my right chest/neck. I appreciate its purpose, but this thing really hurts where it goes into my jugular vein. I wish I would have been knocked out when they put it in, I could feel way too much happening to me during the surgery.
The chemo went well, the drugs didn't bother me too much at the time. One of them gave me an instant sinus headache (so they slowed down the drip), and gave me a rash, but a shot of Benadryl (in the port) helped out pretty quickly. I've been nauseous off and on; I was taking Lorazepam for it - but it was making me lethargic and I was having lots of double vision. Maybe I'll just use it before bed.
The steroid I was on until last night has made it very difficult to sleep. Another side effect from it is a big blood vein popped out of my upper left forehead, it seems to be getting better today - my brother said it looked like the forehead vein of someone working out in the gym.
The day after my chemo I went back into the Cancer Center for a shot of Neulasta in my abdomen. This is to boost my white blood cell count from the chemo drugs. It sure makes me real achy and stiff. From now on I'll have to do the injection at home (an insurance rule?). I thank God I have insurance, they say this shot alone is over $3,000!!
Tuesday, January 12, 2010
Well, as far as we know about that "something" I mentioned below, it is a lymph node that we're guessing is having some post-surgery reaction. I could have a biopsy done or I can leave it alone. At this point, we're going to watch it. The fifteen lymph nodes that were taken out near it were all normal, so the chances of that node having cancer is very low.
Over the holidays I got scared (too much information about people with bad experiences), and was close to talking myself out of chemo - after all, I had already gone through an aggressive double mastectomy, that should be good enough, right?!
Then last week (1/5), I was listening to Public Radio, a woman was talking about writing God a letter asking for help with her troubles, so that night I wrote God a letter asking for guidance; and wouldn't you know this sensitive lymph node showed up a couple days later. This got me thinking about the potential for other "something's" to show up. Even though I would have preferred some other less stressful sign - I will never underestimate the power of prayer ever again.
So I talked to my Oncologist today, I will be starting chemo on Thursday. To be honest I didn't think I could get in so fast. I guess, that will be okay - I won't have that much time to think about it so much. It sounds like a long day: labs; port surgery; radiation doctor appointment; a MUGA scan; oncology doctor appointment, and then about two hours of chemo. If everything goes good, I will be doing the two drugs listed below every two weeks for two months. I'm thinking - Positively! <<Thumbs up!!>>
Thursday, January 7, 2010
Its been a week of doctor appointments. Been to Marshfield twice to get my chest fluid drained. I've had lots of lab tests and a couple scans, everything came back Normal, except the CT scan showed "something" in my right armpit. I had an ultrasound done yesterday, now we're waiting to see what will happen next. Always something.
I started Physical Therapy yesterday. I can't wait for my tight chest muscles to loosen up. Feels like a hard plate running from armpit to armpit that doesn't move.
I got some new 10 year survival rate numbers from my oncologist yesterday. 70% if I do nothing more than the surgery I had; add 10% if I do chemo with two drugs Adriamycin and Cyclophosphamide; add 5% if I add a third drug that I can't remember (it causes numbness in hands and feet). They all have their own serious risks including heart damage and bladder cancer. My recurrence rate is high no matter what I do because of the BRCA1 gene mutation and being Triple Negative.
The end of next week, I meet with a Radiation Oncologist to discuss the possibility of radiation since my tumor was located only 1mm from my left chest wall. There is a possible risk of damage to my heart and lungs. Plus, I'm supposed to have a total hysterectomy sometime within the next six months, again because of BRCA1.
Sometimes I feel pretty confused about all this. To improve my mood, I'm lightly use the treadmill and bowflex, and most importantly have started picking up my bass. My left arm and chest muscles all need more time, but I'll get there!