I was a little freaked out that I couldn't finish the complete course of home antibiotics but Dr. McAndrew said my arm looks great and that I'm fine to stop them (even the two pill forms that I was taking in lieu of the more powerful IV form). Hooray! Small victory today.
In other news I had to get my "raging bitch" shot today. That's the lupron shot. It was a pain in the butt. Literally. You can use your imagination on that one. Anyway, I will be getting the lupron shot monthly for 3-6 months and thereafter once every 3 months. Let's add that to my to do list!
I'd like to thank JDR for taking me to my McAndrew appointment today on last minute notice. She's the perfect doctor appointment companion because she's always thinking of questions I should be asking (good ones that don't occur to me myself) and she is a major multi-tasker. Mostly JDR or as I like to call her, Jeanne Marie, asks me a ton of questions that I don't usually have good answers to that I end up asking McAndrew or some other medical professional). Anyway, it occurred to me that I should be interviewing radiation oncologists since I need to start radiation fairly soon. McAndrew wanted to make sure that if I go to Santa Monica for radiation that the location have the most up-to-date equipment (I want to go to Santa Monica for the obvious reason of not wanting to cross east of the 405 in traffic to Beverly Hills five days a week for six straight weeks...bleh). McAndrew described it as making sure we have the best machines that can analyze and calculate the necessary geometry that will target the breast area but not go anywhere near my heart. I kind of need that to survive over the long haul. JDR called around and got that taken care of for me in a jiffy. St John's in Santa Monica has the same equipment as the Center for Radiation Therapy in Beverly Hills, FYI, as far as breast radiation is concerned. I will meet my first radiation oncologist next Tuesday morning.
Apparently I missed doing an echocardiogram when I was first diagnosed. An ECHO is an ultrasound of your heart. There was an order placed by McAndrew but apparently I was never actually told to get it done or it was never scheduled by her office. Niiiiiiiice. That being said, I have to get another, or rather, my first ECHO done prior to starting radiation. Of course, I have no idea how they will take an ultrasound of my heart without firmly running and pressing a probe with sloppy gel all over my now recovering mastectomy incision and barely healed skin graft? Son of a biscuit that does not make me happy at all. I am gritting my teeth right now with dread.
McAndrew also informed me that she wants me to take a pill form of chemotherapy while I am receiving radiation therapy. She said it is proving to be more effective than radiation alone, however, it does intensify the side effects of radiation. Lovely. If I thought I was going to feel a little sunburned from the radiation, it will now be like I've been baking in the hot desert sun slathered in baby oil like all those idiots used to do in the 80's before we discovered a little thing called melanoma. WTF. The pill is called Xeloda and she said it was the pill form of 5-FU which was part of my original FEC-100 chemo treatment when I was pregnant. That brings my final total to 1) Lupron shots + 2) 5-FU pills + 3) radiation. Somehow the math doesn't compute. I feel like there's something she isn't telling me. I really feel like she is throwing in everything but the kitchen sink. Why is that? I don't like feeling like that. And let's not forget that after radiation I will immediately start the tamoxifen which I will take for a total of five years. I'm getting a little overwhelmed here.
Speaking of dread, well not really, more like dull anticipation and faint hope that it won't be the case...I go see Barbara Hayden tomorrow to see if she will have to remove that piece of skin graft and re-close my incision. She explains that if that were to happen I can do it under "local" and have it done in her office. She would just have to take "a small triangle" piece. That really does not make me happy. It seems to be healing and she said it is a waiting game BUT she is leaving town Wednesday and I have to start radiation soon so we don't have time to waste. If she doesn't like the way it looks I imagine I will have a procedure done tomorrow to fix it. Ugh. Ugh. Ugh.
And another thing that is up in the air because of this "healing skin" issue is the fact that I still have to "pump up" the expander with saline to the appropriate bra cup size. I have to be finished with the expansion process BEFORE I start radiation. It has to do with the geometry of the radiation process. Once they start I can't do anything more to the breast area. So that's another thing "we", meaning my medical team, have to figure out. McAndrew said that all these things will be discussed with her, Barbara Hayden, and the radiation oncologist to determine that proper balance of how long I can wait to heal and do the expansion process vs. how quickly I need to just move forward to the next step.
Sometimes it hits me just how scary all of this is and how I'm not really out of the woods yet nor am I at mile 25 of this stupid f-ing marathon. Just had one of those moments typing about all the things that are still left to do. Every time I feel like I am closer to the end, I realize how I am just like a donkey with a carrot tied on a stick in front of them. I am continually chasing the proverbial carrot. Hee haw. Hee haw. I'm a dawwwnkeeeeey (that's said a la Kenneth from 30Rock style).
What hurts right now the most is my stupid left arm from the "axillary lymph node dissection" - aka removal of level 1 and 2 nodes in my arm pit. I mean what did they do exactly when they took my lymph nodes out? What did I need my lymph nodes for anyway (my mom asked me that)? And will it ever stop feeling so numb? Here's a little instructional video I found that helped me figure out the first question...this is mainly for you doctor wanna-be folks like Ashley. If you aren't a doctor type do not, I repeat, DO NOT continue to Chapter Two after watching the first video on anatomy I am linking you to. Take my word on that. Alright? Later on I'll explain why I need lymph nodes. We need a lesson on lymph nodes. The answer to the final question is that I may not regain full sensation in that arm pit because the nodes are close to a major nerve that can get damaged in surgery. The numbness could make shaving the arm pit dangerous or impossible. Or alternatively, it could make laser hair removal a real breeze. No need for numbing spray! For all you Billy Madison fans..."If you're going to stay home today, you can can help me shave my arm pits!"
Anyway because my arm hurts I haven't been great about doing my physical therapy exercises. I do some but not a lot because I don't want to hurt the healing of my incisions either. I'll have to ask Dr. Hayden about that tomorrow. Jeeez, it's like walking a fucking tight rope. I really, really would like to just fast forward to next summer please.
So things to do 1) explain the lymphatic system to myself and those that want to know and 2) write the "how-to" manual on chemotherapy and being bald. My scalp is doing so nicely this second time around. I knew what to expect and how to manage it. A surgeon's scrub brush is key.
Sorry for the cynicism in tonight's post. I suppose I am just feeling a little jaded!!
No comments:
Post a Comment