Nobody wants to be the bearer of bad news. Before I told anyone mine, I had a week to digest what was happening (while I awaited biopsy and results), so my emotional state was far beyond that of someone just finding out. Therefore, I want to preface my disclosure to anyone with "You may NOT cry. I do NOT want sympathy. No hugs, because they will just make us emotional. Just ask questions and offer help if you want to."
The few people I have told so far have been pretty good with following those ground rules, although I haven't actually laid them out in so many words. But I know they want to ask lots of questions and might be biting their tongues. So here's what I've learned in the past ten days:
The only thing people know about breast cancer is that it has "stages". When breast cancer starts to grow, you don't immediately feel a lump, so unless you're really lucky and someone has a great eye on a routine mammogram, most women skip the whole stage 1 thing without knowing. By stage 2, when you feel a lump, there's a possibility that the cancer has spread to the lymph nodes. If it's hanging out and spreading in there, you might be a later stage 2 or a stage 3. However, the only way to find out if there's cancer in the lymph nodes is to operate, take one out, and check. Instead of scheduling a separate surgery just to "stage" my cancer, it'll all be done at once. During my double mastectomy, they'll do something called a Sentinel Node Biopsy. Immediately, they'll know if there's cancer in the lymph nodes and if so, they'll take out all of the nodes that could possibly be affected, an axillary lymph node dissection.
So to answer your instinctive question, I won't know my stage until after my mastectomy.
On to the fake boobs questions: After Dr. Cooper takes off my right breast and does whatever he needs to do with my lymph nodes, he will walk on over to my left side and Dr. Baum will go to work on the right. Dr. Baum puts in an expander which is basically a bag that can gradually be filled with water. Then he closes up the flap and will do the same to the other side when Dr. Cooper's done there. Over the course of a few months, as I heal, Dr. Baum will gradually put water into that expander to stretch my new skin to a desirable breast size (in my case, smaller than these real things). When we reach an agreeable size, I have another surgery where the expanders are replaced with "permanent" silicone implants (which can last up to 20 years, so I know there will be more breast surgery, but whatever).
Another option would be to take some of my fat from my tummy or butt and insert it into my chest to make new boobs. However, wonderful Dr. Cooper informed me that I'm clearly not a candidate for that. Dr. Baum backed him up by saying that I'd only have enough for a small B cup. My real reason for not exploring that option is that it takes much longer to heal. I want to be back on my feet and playing with the girls asap.
So then what about the chemo, right? Since there are cancer cells growing in my breast, some of them might escape to my bloodstream. These stray cells will not cause a tumor or grow elsewhere right away, but five, ten, or twenty years from now, that breast cancer might be in my stomach or brain or where ever. To prevent that, they have to kill any stray cancer cells by poisoning them. If I were older, this step might not matter, but since I have many years to live, we want to be aggressive and get rid of them.
Chemotherapy decisions are made with an oncologist, whom I have yet to meet. From what I do understand now, though, my treatment will depend on that staging that isn't done yet. What will happen is I'll go in to the oncologist every two weeks or so and they will hook me up to an IV which gives the drugs. Then, for a few days, I will feel like I've been hit by a truck. I'll stay in bed and not feel like doing anything. Gradually, my body will heal, and for the second week I might be back to normal. Then I go back and repeat the process. Whether this goes on for 2 months or 6 months will depend on how much cancer they find. It also depends on how my body responds physically. If I don't recover quickly, the chemo might be every 3 weeks or something, extending the process.
Yes, this is the lose-my-hair kind of chemo. I think I'm more of a head scarf and hat person than a wig woman, but I guess we'll see. We all know that chemo makes people throw up, too, but the non-oncologists have informed me that there are now drugs to control the worst of the side effects, and those can even be tweaked to help with the symptoms that I'm personally experiencing.
So my guess is that by Halloween, this'll all be history.
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