Having cancer is all about waiting.
Waiting to see the doctor. Waiting to hear about treatment. Waiting to see if it will work. Waiting to see what side effects you'll get. Waiting for tests. Waiting...waiting...waiting.
The last three weeks have been a lot of waiting.
I had my last A/C chemotherapy session on Christmas Eve. It was the worst one and the side effects lasted much longer than all the others, so I'm ecstatic that those are over. My nurse informed me afterwords that Adriamycin is known as the Red Devil (the medicine is red) by lots of patients. She said she doesn't usually tell people that up front, which I can understand. It was better to go into the bad stuff not really knowing what to expect. I fully believe that having a positive attitude going into treatment has helped me feel better about the whole process. If you go in anticipating feeling shitty all the time, it's hard to motivate to do anything.
So on January 7, I started my 12 week regimen of Taxol. Taxol does not have the same side effects as the A/C - no nausea and no Neulasta. Overall, it's much easier to deal with. It does bring my white and red blood cell count down which leads to more fatigue, but I tend to really only feel it in the evenings. After 6 I'm pretty much down for the count. Supposedly I'm more prone to infection, too, but so far I've fared ok through cold and flu season. It also supposedly does and number on your finger and toe nails, so I'm expecting to lose a few toe nails during the process. My poor toes are still recovering from the marathon in October, though, so I'm kind of used to them falling out already.
The surprise side effect has been the stomach cramps. Some people get them, but not many. It doens't make me nauseous, and doesn't seem to be affected by anything I eat. I just have stomach cramps most of the time. Awesome. But I guess it could be worse.
Taxol also causes hair loss, so I'm stuck with being bald for few more months. It really is the worst part of the whole thing. If I still had hair I'd at least be able to fake that things are still normal, but it's a constant reminder when I look in the mirror that I'm sick. And I just don't think I look good bald. But it's given me a whole new perspective on how guys feel when they start losing their hair.
The hair loss so far has been pretty weird. The chemotherapy kills off cells that multiply rapidly, so that's why the hair on my head has fallen out. Apparently, though, hair in other places doesn't multiply or grow quite so quickly. I still have air hair, eyebrows, and hair on my toes. And I still have to shave my legs - granted, not quite as often as before, but I still have to do it. I even have a pretty good, spaced-out fuzz on my head. Not enough to even suggest that I have hair, but enough for me to wonder why the hell that hair isn't falling out. Weird.
My intensive internet research of chat rooms has suggested that Taxol may be the end of my eyelashes and eyebrows. I'm hoping I beat the odds on those or I'm going to REALLY feel like a freak. But thankfully I have wonderful friends who have loaded me up with all the make up I need to recreate my brows and lashes if need be. And then there's YouTube where you can more than enough videos on how to draw on eyebrows. It's fascinating. Look it up.
And speaking of fantastic friends......I can't even begin to express my thankfulness for all the amazing care packages that have come my way. They light up my day and help me keep going. Thank you, thank you, thank you to everyone who has visited, called, sent well wishes, cards, packages, and meals. It really is overwhelming.
A few weeks ago I posted my current medical challenges on Facebook. It took me a long time to decide whether or not I would do it. I finally broke down, though, and put it out there because I knew there were friends who would want to know. I have to send a huge thank you out to all of those friends, too, who expressed their love and support. I now have a constant stream of email and Facebook well wishers, and I've reconnected with friends I haven't really talked to in years. It's been a great reminder of how real friends never really go away.
So where does the waiting come into all of this?
Well, first I waited for the genetic testing that I sent in around Thanksgiving to come back. This blood test would tell me if I carried the BRCA 1 & 2 mutation that leads to a greater risk of breast and ovarian cancer. This is the gene that Angelina Jolie made so popular when she decided to have a double mastectomy before she even had any signs of breast cancer. If I came back as positive for this gene, it would mean a double mastectomy for me for sure and probably a removal of my ovaries, too, just for good measure. Luckily, the test came back negative. No BRCA 1 or 2 in my family. Which is also great news for my 3 nieces. This now means that my surgery options are more plentiful.
Then there was the waiting for the ultrasound. Between A/C and Taxol, I was sent in for an ultrasound to get a better view of how the chemo is affecting Darth (the tumor). Waiting never seems to be so long as when you're laying on a treatment table in a medical gown waiting to hear if the poison you're voluntarily pumping into your body is doing any good. Long story short, the answer is.....kind of.
I mentioned in an earlier post that when Dr. M palpated Darth he measured smaller. Well, according to the ultrasound, he's probably only about 10% smaller. He's just changed shape. Flattened out a little so he doesn't feel so big. But he's not growing, which is the good part. Darth may, in fact, be hollow inside, or filled with holes like swiss cheese. The chemo may be doing great things, but at this point it's hard to say whether Darth is a shell of a tumor or solid. Either way, he's still pretty big. Which means a probably mastectomy after all. We just have to......you know it......wait and see.
Dr. M put in a referral for me with a plastic surgery group in Denver that does a surgery called DIEP flap reconstruction. Unlike the surgeries I was looking into that involve taking muscle from other parts of the body, the DIEP procedure only takes fat and skin as well as the blood vessels attached to them from the lower abdomen. It does require an incision in my belly, but overall results in no resulting muscle weakness. The results are more natural since no implants are required, and there actually is a chance of retaining or regaining some sensation in the breast.
I wasn't really all that hot on the plastic surgeon I consulted with initially, so I'm happy to have a second opinion. Plus, when my oncologist recommends a procedure and some great doctors, I'm pretty inclined to follow her recommendation. Here's the trick, though. The doctors and the facility do not seem to be on the provider list for my insurance. So what do I have to do? Yup. Wait and see if they decide to cover it.
The cancer roller coaster rears it's ugly head again.
I was also waiting to hear whether or not I had gotten into a clinical trial that might prevent me from having to have a full axillary node dissection - or the removal of 5-30 lymph nodes under my arm. Apparently, since I also have a small lymph node on my breast bone that is affected, I am not eligible for the study. Dr. M thinks there might be a way to just take out a few lymph nodes instead of all of them, but again.........I have to wait to find out.
So I just keep plugging along. I generally feel pretty good, so it's much easier to deal with my physical effects. The mental side of the waiting game is starting to wear on me, though. I should be done with the Taxol at the end of March. And then I'll have to go back in for more tests - MRI, ultrasound, etc. - to see how Darth is behaving. And then hopefully I'll have some answers.
But until then, I wait.
With all the poisons I've been dosing myself with, I've been laying low on the cocktails. I figure my liver could use the break. But I've been having a little Irish Cream in my coffee.
You should definitely have a cocktail for me, though. Cheers!
