Update 9/30 last chemo coming up and surgery too

Hi all,
Surgery
I went to USC this past Tuesday to meet with both of the doctors involved in my surgery, which is scheduled for October 17th. First, I met with Dr. Silverstein and I told him about hte benign finding in the left breast biopsy but confirmed that I want to do a double mastectomy with immediate reconstruction. I think he kinda wondered why I was there and thought that I should be talking to Dr. Sherman about the reconstructive aspect of things, but I metnioned that the variable factor that would affect the reconstruction was radiation, and that in my last meeting with Dr. Sherman, he was reluctanct to discuss more details of the operation and answer any more of my questions without talking to dr. Silverstein first about the possibility of radiation following mastectomy. Generally speaking, they don't radiate following a mastectomy unless there are 4 or more positive lymph nodes that are positive. However, it becomes a little statistically iffy if you have between 1-3 positive nodes. To radiate, or not to radiate, that is the question in that case. The oncologist I saw here recommended radiation on the right from my collar bone all the way through the axilla (armpit). However, Dr. Silverstein felt it would be doubtful that I would need radiation since I only had one positive node to begin with and I've undergone the neo-adjuvant chemotherapy, which has significantly shrunk the tumors and it might be quite possibly that the pathology following the surgery will show that I have no positive nodes at all. that would be great becuase then I wouldn't have to make a decision about radiation, it would be sufficient at that point to say that I don't need it. So, the tricky part will be if they find that the one node is still cancerous and if there are any other positive nodes in the tissue that were too small to appear on the PET scan in the beginning that detected the original node.
Okay, all that to say that the type of reconstruction you can do is limited if you are going to have radiation and it can affect the cosmetic result. It's fine with me that my options are limited becuase the other types of reconstruction that involve autologous tissue (taking your own tissue from your stomach, back or butt and literally moving it to create a breast mound either underneath your existing tissue or removing it and reattaching it) compromise your muscle strength and have a much longer recovery time. So, I'm going with tissue expanders so that if they have to radiate afterwards, there won't be that much imact. Radiation doesn't mix well with implants, so that's why I wouldn't do implants right away, I would wait until I'm all done with radiation and all of the skin has healed as best as it can, and then I would swap out the tissue expander (which is like a balloon) for an actual implant and I can choose from saline or silicone when I get to that point.
So, here is how it will all play out at the moment:
IF my blood counts are good - and I'm going to do everything I can to make sure that they are - then I get to have surgery on the 17th. They'll even test my blood that morning to make sure that I'm okay. I should be, though I'm a bit worried about my platelets because those have been low during this time and there aren't any growth factor shots that you can take for that like you can for the red and white cells, so that part is more obviously reliant upon God to provide enough platelets for me to have surgery that day.
This is the timeline that I know of at this point:
I'll go to LA on the 16th so that I can settle in to my aunt and uncle's the night before, and my mom is also arriving that day. On the morning of the 17th I'll have to be at the hospital around 6:30am for some pre-op stuff and then I don't have surgery until 11:30 later that morning. I'll be in the hospital for about two nights at USC/Norris Cancer center and then I'll be released to go to my aunt and uncles' house for recouperation. I'll have some drains that I'll have to take care of and stitches, etc. The third week after surgery I'll go see Dr.Sherman for my first "fill" of the expanders. The expander is placed underneath the chest muscle, so the balloon will, over time as they are filled, push out the chests muscle to meet the existsing skin and then expand both together until they are the right size. I'll have to go approximately weekly to get filled up with injections of saline until that process is completed and it will take about 6-8 times for the process to be complete. I'll come back to the desert somewhere around 3 or 3 1/2 weeks after the surgery to finish recouperating, with weekly trips to LA for "fill up."

Yesterday I spok with my uncle John's friend (in Seattle) named Meg who had been through the exact thing that i'm about to go through at around the same age, with the exception of radiation. She was soo helpful because she was able to tell me what it was like to recover from the surgery. Basically, I'll only be able to use my forearms since from my elbows to my shoulder will be pretty much stuck and I can't use them for the first week or two so I'll have to rely on everyone to do things like pick things up etc. I won't even be able to rearrange my pillows or reach to get the nurse call button while i'm in the hospital, so that's why Meg suggested that I have someone stay with me in the hospital both nights because she said I'm really going to need the help. I was so glad to know that so I could prepare for it. So, my mom is going to stay in the hospital with me, and she's a nurse and already knows about how to help with the drains that I'll have, which is really great.
Meg also suggested that i get one of those reading pillows with the arms for reading in bed becuase it helps the drainage process, but more importantly, it will be really hard for me to sit up without being able to use my arms from a prone position. she said you just don't realize how much you use those muscles until you try to do something and it really hurts or you can't. So, being propped up will help me if I need to get out of bed or stand up. I'll still need help that first week, but the pillow will help as well as some other fluffy pillows on either side of my chest for cushion and support. I should be able to do some walking which would be great and will help the healing process, I'm told. We'll see how it goes. The next major thing before surgery is
Last chemo on October 2nd
I'm pretty excited about this being my last time taking Taxotere. I'll have to take herceptin, which technically isn't a chemo drug but it is a chemical that I have to take intraveinously for a whole year.. So, at least the chemo cycle is over and hopefully the chemo world that follows each treatment. Please pray that my red, white cell counts stay strong as well as my platelets for the surgery, and that the mouth sores won't be that bad this time (they can be really painful where its just really hard to swallow, period). That would be nice. I'd really like to have the surgery on the 17th. Really, Lord, I would.
I'll have to arrange to take the Herceptin while I'm up in LA since I'll have to take that every three weeks until next August I think, when the year is up. I'll also be starting on Tamoxifen, but I'm not sure when that will begin. I'll have to take Tamoxifen for about five years. What that drug does is it acts like a barrier to prevent the estrogen in your body from getting near to the cancer cells in the breast tissue. It has some side effects that put your body into premature menopause, but I'm already dealing with hot flashes and they're not that big of a deal, so who cares. The only part about the tamoxifen that I struggle with is that the estrogen level that is feeding the cancer is relatively small, like 8%. So, the argument is to use whatever therapy is available to help prevent a recurrence or a new cancer, even if the chance is small, since I'm only 38 and I've got a lot of years left to live :-). So, I'm going to do it becuase it cuts whatever risk I have in half.
Well, other than this news, I'm trying to go to the gym when I can, and take naps when I need to even though sometimes I feel like a wimp, and just listen to what my body needs rather than having my mind override it which it is good at doing (yeah, type A personality sometimes is not good but I'm learning).

Quoting a friend's recent salutation:

"Refuge and strength,"

[the lord is our refuge and our strenth, our very present help in time of need]

Julie