Saw the oncologist yesterday. He said my labs looked perfect, so I was approved to start cycle 2 of Xeloda today (not as exciting as it sounds). Chemo was delivered while I was at my appointment, of course it didn't come while I was home all day. But, it wasn't too cold outside and it was waiting for me on the front step when I got home.
I have finally developed a fool proof system for keeping track of all my questions for appointments. Whenever I think of a question to ask my oncologist, I jot it down in the notes app on my phone. I used to jot it down on a piece of paper, but then I would forget to bring it with me, or it would be so messy I couldn't read it, or I would end up with multiple pieces of paper. The phone is much easier, and I always have it with me which is a plus. Since I haven't seen my doc in a couple of months, I had a plethora of questions. Even though I was his last appointment of the day, and he undoubtedly was already late getting home, he took the time to listen to Andy and I and answer them all one by one. What a great guy!
Here are the things we talked about:
My hormones were knocked out of wack by chemo, but since I have been off the really hard stuff since the end of July, I have noticed some tell tale signs they are starting to come back (don't worry, I won't get in to specifics). Anyway, because my tumor was hormone receptor positive for progesterone, research shows that suppressing hormones is another step that helps ensure it does not grow back. Dr. Anderson agreed it would be a good idea for me to start the Lupron shot which will suppress my ovaries and thus the hormones they produce. At some point I may consider just having them removed too, but for now I will be getting the shot monthly. So, if I seem extra crazy next time you see me, blame it on the chemically induced menopause!
Dermatology referral. Another interesting fact about cancer treatment that no one ever talks about is the fact that loosing your hair hurts, and it hurts when it grows back too!! I have little bumps on my legs and arms which are all ingrown hairs. They have been there since August, and although I have tried almost everything, nothing has seemed to get rid of them. So, I will be seeing the dermatologist whenever I can get in.
National Institutes of Health (NIH). I have officially been accepted into the CDH1 genetic study (can't remember if I mentioned that before). I have been in contact with the scheduler and nurse coordinator at NIH but have been unable to schedule anything without talking to Dr. Anderson first. Well, he gave me the approval to schedule my initial visit which consists of meeting the team and having a baseline endoscopy and stomach mapping. I am just waiting to hear back from Dr. Davis at the NIH to make sure he is comfortable doing the testing while I am receiving Xeloda. My bloodwork has been fine, and that is why Dr. Anderson approved it, but Dr. Davis has the final say. Fingers crossed. I would like to get things moving if at all possible. Plus, a trip to Bethesda, Maryland would be a much needed break for Andy and I since we haven't been able to travel recently.
The type of breast cancer I have has been changed. I know, weird right? Nothing to be worried about though. It doesn't effect my treatment, overall prognosis, or anything like that. It is just the way my cancer is categorized. It was explained to me that being diagnosed definitively through biopsies is very difficult and sometimes after surgery it changes because they can finally see the big picture. Well, that's what happened in my case. After surgery, the pathologist did some extra testing, took into account my positive CDH1 genetic test result, and put it all together. My original diagnosis was Invasive Ductal Carcinoma (IDC), which is the most common type of breast cancer. My diagnosis was changed to Invasive Lobular Carcinoma (ILC) because the cells and the way the tumor was structured fits this type better.
Recovery from surgery is going really well. I have seen the occupational therapist and have been doing the prescribed exercises. My mobility and strength is returning. I will be starting a strengthening exercise program specific for breast cancer patients next week. Looking forward to learning about strength training I can safely do at home following surgery.
I requested and received all of my imaging from the hospital. It came in the mail on multiple CDs. Unfortunately, none of the computers in our home have CD drives anymore, so I had to purchase one from Target. Luckily it was on sale. Being a visual person, I have wanted to see proof, instead of just reading the reports, that my cancer responded well to chemo. I thought it would be scary to see the cancer in image form, that is why I have waited so long, but I actually feel relief. Relief that the chemo did its job, and relief that I I haven't gone through all this for nothing. It was BIG and ANGRY looking, and I'm glad it's gone.
Left: First MRI right after diagnosis. Yes, that big yellow and red blob in my left breast is the cancer! Yikes! Right: Last MRI right before surgery and after IV chemo. Can barely see it, and it isn't as active because it is blue. Hooray!
Dr. Anderson said I am technically in Remission since all the cancer was removed during surgery!! I will have to keep reminding myself of that as I continue with Xeloda.