Friday, February 12, 2010
Shortly after my last update, I went to the radiation oncologist to get started with radiation. My appointment to get "marked" was on the 20th of last month. Scott's mom came up to watch Annabel because I had a lot to do that day. The appointment didn't last long and aside from the discomfort caused by my arms (the right, particularly) being over my head in the CT scan, I was ready to go and run the rest of my errands. I had to go to the unemployment office and had to wait in line for 3 hours there. Not pleasant and by the time I got home, I was pretty tired. When I sat down, I also realized that I was in a good amount of pain. Mimi left to go home and I fed Annabel and got in bed with her. Scott had a work dinner that night and was home by 10. The pain medication that I took didn't even touch whatever was going on. By the time Scott came home, I was freaked out and crying because I was in so much pain and was not feeling well and was also running a low fever. I called the doctor at around 11, took some medicine as recommended and tried to sleep. I was to call her back if anything changed and at around 3, I woke up and threw up a few times and was in excruciating pain. When I called back, the doctor told me to go to the ER. I was having trouble getting a good breath because of the pain, my fever was worse and I just felt awful. I went ahead to the ER and Scott called his parents to come up (again!) to be with Annabel so that he could meet me up there. I had x-rays and scans, but they didn't ever find anything and sent me home quite doped up. Scott had to leave for work while I was there and his Dad came to the hospital and sat with me for the rest of the time that I was in the ER. I was glad for his company, but I am scared to think what we might have talked about because I was WHACK on whatever they gave me when I got there. I do remember dozing on and off and waking up muttering about something and he gave me a funny look, so who the heck knows what I said! A few days later, I also had an ultrasound on my abdomen to rule out any gall bladder issues. That day or the next, the lower half of my expander (boobal area) was blazing red and hot to touch. Sooooo....I have an infection. Since the 20th, I have been on round after round of antibiotics (5, I think) and have seen my plastic surgeon once or twice a week. At this morning's visit, we discussed the options in case it doesn't continue to improve. Hopefully it will continue to get better so that he doesn't have to surgically intervene. Every time I've seen him, he has gotten out a massive needle to extract fluid from the area under my expander. Thankfully, I don't have any feeling down there, but it is unpleasant anyway. Now he says that the fluid looks less infected, so I am hoping that it is really clearing up and going away. The infected area looks really gross now and is peeling and crusty around my incisions, but the doctor says that is a sign of healing. I have been in pain and have also been very run down for weeks now, so it has been sort of a rough time.
I started radiation on the 27th and will have 33 total treatments. I go to the Cancer Center every morning during the week for my 8:00 zap. So far, I have completed 12. As yet, I don't have any side effects and don't notice any changes to my skin. I have been told by the radiation techs and the doctor that I will start noticing a burn pretty soon. If all goes as planned, I will finish radiation on March 15th. The Ides of March! Getting radiation is sort of like getting an x-ray. I go in and change into a gown on top. When they call me, I go back to the radiation room and take the gown off and lay on my back on the table. I have to put my arms over my head in armrests and then the techs make sure that I am lined up by checking the marks they have made on my chest (lots of marker and many sticky stickers that don't fall off in the shower). I stay put and the machine moves around; the techs come in between each of the three zaps to recheck my alignment and move the machine to the next spot. Every other day, they put a gel pad over my chest to trick the machine into thinking that my skin is thicker so that my actual skin gets some of that good old radiation. It is all very systematic, which is both disturbing and comforting at the same time. Once a week on Mondays, they weigh me. On Wednesdays, I see the radiation oncologist for a quick visit and on Thursdays, I get x-rays so that they can make sure that their precision machine is zapping me in exactly the right place. I leave the house every day by 7:40 (well, that's the goal) and am back home by 8:30, so Scott is going to work late while I have radiation.
During all of this mess, I decided to quit the clinical trial. I was supposed to start the Avastin infusions on the 25th of last month, but with everything else going on, I was so worried about it. It just didn't feel right for some reason and then I found an article that indicated that about half of a small group of women on the study had failed reconstruction after restarting the drug post surgery. I also know that there is no guarantee that Avastin prevents recurrence, so I was even more trepidatious about starting the trial again. I spoke with my chemo nurse, the trial nurse and my oncologist (and of course, Scott) about it and came to the conclusion that I would not continue with the trial. I didn't mess things up for them; they will still be able to use the information to this point and I elected to continue to be available for monitoring, etc. I still feel confident in my decision. I think the additional treatment would also bring me additional stress and it just seemed like a neverending road to have 30 more weeks of that in front of me.
Treatment, treatment and more treatment. I spoke with one of my brother Jeff's paddling buddies the other day who just happens to be a well respected gynecologic oncologist (try to say that out loud 3 times!). I wanted to talk to him about the impending oopherectomy (ovary removal). My gynecologist had recommended a hysterectomy and when I stopped for a minute to think about that, I wanted to speak with someone else to get another opinion. It seems a little much to just remove all those lady parts when only the ovaries need to go. Dr. C recommends just the oopherectomy; he thinks that a hysterectomy is unnecessary in my case and that my recovery time will be longer. He also reminded me that it is ok to slow down because as long as I am getting regular screening, there is no rush to go under the knife for this immediately. It was very cool to have a candid conversation with a doctor. My sister Karen has a friend who is a surgeon up north and I have spoken to him a few times throughout my treatment to ask for another opinion. I feel like both of these guys have helped me immensely with their objective opinions and I feel like their input has provided both reassurance and the confidence to really talk to my doctors about my concerns and questions.
My hair is growing back!! I have hair!! I am so excited about it. It is still super short and while I'd like to think it's Mia Farrow-ish circa Rosemary's Baby, it is really more Monchichi right now. Not very glamourous! It also has lots and lots of gray. I do not care. I am glad to have it and I even like the way it looks at the moment. It is still so short that it is zero maintenance, but I have enough of it to use SHAMPOO, which is really cool considering how I have been washing my head with soap for months now. I even have bad hair moments now! Sometimes it will poke up and look a little unruly. So exciting! Pretty soon, it is going to start looking weird because it is long enough on my neck and over my ears that I might need a trim. I don't want to end up with a mullet or anything.
As far as the boobal area goes, I am getting used to the way that the expanders look and am grateful to have two that look basically alike and not so strange to attract any attention. They are still very uncomfortable. Just to remind you, these things are like bricks on my chest. They are absolutely immovable. They do not bounce or wiggle or slide to the sides when I lay down. Think Barbie boobies, only not as soft. The perks are that I don't ever have to wear a bra and the shadow of my right bump looks not so bad on the ceiling of the radiation room. Because it is like a Barbie boobie. I guess I am still just getting used to them, which makes me very much look forward to getting some real fake boobs. Yay implants! I can't wait.
Kim had her prophylactic mastectomy a week and a half ago now. She is recovering very well. She had the DIEP flap surgery where they remove your breast tissue and make new boobs out of belly fat. She was even able to keep her nipples and I think that she is very pleased with the outcome so far. Not many surgeons are skilled with this surgery, so she had it done in Charleston and Karen met her there to be with her while she recovered. Annabel and I drove down last weekend to visit and were there when Kim came home from the hospital on Sunday. She is a real trooper and is very mobile for someone who had surgery like that. We were there when she got the call from her doctor that her pathology was clear and there was no cancer, so that was a great relief. I am astounded by her bravery to have the surgery! It is not entirely uncommon for women who are at high risk to go ahead and have the surgery before they are struck with cancer, but I can't imagine how hard it would be to make the decision to go ahead with it. I am not sure that I would have the courage to do it if the situation were reversed and I'm really proud of her for taking control of the like this. Cancer is awful and I know for sure that I don't want to see anyone in my family or any of my friends go through it.
Annabel is doing great. I SO love being her Mommy! She is amazing. We started going to Gymboree again last week and I think she is enjoying getting out of the house and playing with the other kids. She is still all about her shows and is very opinionated about nearly everything. If we let her, she would live on "choc milk" alone. It is ridiculous. Her vocabulary continues to increase daily and I am always amazed and impressed by what she has to say. And she is very observant! Nothing gets by her. While we were in Charleston, we laid down in bed to take a nap and she told me that I was on the wrong side of the bed, that's where Daddy sleeps. And would not stop until I got up and went around to the other side. So picky! And amusing! Annabel is with Mimi and Pop Pop tonight for a visit and Scott and I are going to finally spend some time together. I feel like I haven't seen him in a long time because I've been so exhausted lately that I go to sleep with Annabel every night! I am looking forward to a date with my husband.
That is the update! It is still snowing. Not good. Can somebody please do something about that and make it go away? Thank you!