Talked to THE SURGEON on Wednesday. The appointment started with a real for real photo shoot (and here I thought I was just taking on quick pic with the doctor for a brouchure of some sort)! I was cute, I think, so it was all good. Just funny. The photographer had us set up in a room and posed us like we were in an appt. He was saying stuff like, "That's it, happy expressions, not put your hand on her shoulder, make eye contact, keep talking, hold the chart like this, look over here, do this, just three more." Really it was like ten more, but hey, I didn't care. I'll be in a brouchure to be used before the legislature! How cool is that!
Now for the real deal. I'm going to back track a bit, because I let something important slip through the cracks back in the beginning. When I originally met my surgeon, we went over the tests I had done at the first hospital, the reading they did of those films, my biopsy report, etc. I don't remember ever going over my pathology report face to face, but I do remember talking about the fact that cancer cells had gotten into my blood hence chemo pre-surgery. Going forward from that telephone coversation to one on ones about other test results, I never followed up on what that meant, what the medical term for cancer in the blood was, or what it really meant. All my test results showed the tumor we knew about, my PET/CT (I love this test!) showed an internal mamary lymph node that wasn't that big, but lit up for cancer. The PET didn't show anything on the left and none of my other lymph nodes lit up. The other follow up tests showed normal lymph nodes under my arms, and I thought had cleared the left as well. In my mind, cancer in the blood and the lymph nodes became one in the same. So when tests didn't show anything but that one lymph node and we talked about radiation in terms of lymph node involvement, I was given the impression that because it was only that one lymph node and it was small and I was going to be taking herceptin for a year, foregoing radiation wouldn't really be a big deal. So that's the background.
Flash forward to September 17, 2008. Looking at my surgeon. She tells me surgery will be somewhere before Turkey Day, probably the week before. (Hopefully, Re is here as I probably won't be able to make Turkey Day dinner for myself the week after surgery and I always throw down and enjoy doing it even if it's just for me). I should expect 6/8 wks of recovery. Then she says..."followed by radiation." Whoa, Whoa, Whoa...back the bus up! Didn't we say that depending on how the lymph node reacted I could forego radiation. "Your pathology report shows extensive angiolymphatic invasion." We start talking about that, but it wasn't a meaningful conversation because I had reconcilled cancer in my blood with cancer in my lymph nodes and I knew my lymph nodes came back clear except for that one in my chest. So essentially the doc and I were having two different conversations. She just kept saying, "I'm here to save your life and because your pathology report says that you have extensive angiolymphatic invasion, even tho your tumor is only a grade II and seems to be responding to treatment, you are young and we want to be agressive." YAY!
I didn't want to have radiation, I'll post more specifics on it, what it is and what it does to the body when I pull my radiation research, because it essentially burns your skin, which as you can imagine kills it. Not only is it just not something that sounds fun to go through, it could potentially delay reconstruction. I will have to revist the plastic surgeon plan after I see the radiation oncologist. If you're keeping count, I will now have four doctors dedicated to my cancer. All of them are great, the top of the top, but damn. Being given directions from four different people, having to vist four different people and to have to understand how they are interact and are interconnected...it's kind of overwhelming...good thing I'm a smart kid! lol.
Plastic surgoen suggested looking into a nipple saving mastectomy, which I did my research on and knew before going to THE SURGEON that this wasn't going to be the surgery for me since my tumor was close to my nipple and that's one reason not to save the nipple. Better safe than sorry. Who cares right...I won't be able to use them either way. If people don't know I've been thinking of going bilateral. I don't have the BRCA gene, which everyone thinks is amazing, but because of the characteristics of my tumor, the whole "extensive angioinvasion" bit, I'm a high risk for recurrence. No matter what I do, it could come back and I just have to deal with that. But by going bilateral, I reduce my risk of recurrence by 90%. That's huge. There is still the chance, that no matter what I do it's meant that I go thru this again and if so, so be it GOD knows better than me. Surgeon says if she were me she would do the same and she's not uncomfortable with my decision, especially since if I hadn't made that decision, we would have to do more testing on the left (since I guess considering the left and lymph nodes to be cleared from prior testing, was not a permanent statement).
I will have another PET/CT in the next week or two. I will meet with the radiation oncologist after that and then go back to my plastic surgeon there after to discuss how radiation will affect the reconstruction plan. On 10/24, I will start Herceptin on an every three week rotation, 30 mins each session for the actual infusion (if I have to have blood and drs appts too, add another 1 or 2 to the 30 minutes of drugs). THE SURGEON said six weeks of radiation, which I believe is every day, she said for 30 mins or so, but I won't know when that would start until I sit down with the radiation oncologist. Plastic surgeon said I should expect a year of surgery after the initial surgery, but that reconstruction usually takes 6/8 months to complete. After I finish radiaiton, I will start the hormonal pill, tamoxofin, which I have to take everyday for five years! YAY ME!
I was very upset on Wednesday. I cried again and I don't do that often. I came home and shut myself in the computer room, got on the internet and did as much research as I could on "angioinvasion" and risk of local and distant recurrence, couldn't really find anything all that helpful. Then I tried looking for information regarding results of reconstruction after and/or during radiation...again, not much I could find. So I will post the process as I go through it. Finally, when I couldn't stay awake anymore, I fell out to another sleepless night. My potassium is still low. It makes me urinate more (oh and there is more urine because without potassium the urine can't be concentrated or something like that) and makes me constipated. I wake up almost every two hours during the night like clockwork, half the time for no reason, half the time to pee when I shouldn't have to. Not a lot of fun when I'm already crazy tired from the chemo itself. Reading another lady's blog, the fatigue may not go away just because the chemo is going to stop in October. Great! How long am I going to be so tired??? Really??
Going to THE SURGEON was like starting all over. But Eff It, what can you do right, but push through it! You do what you got to! I don't have big breasts to begin with, but being bald and having no breasts...what a hit to take as a woman, and I'm only 27, not married, no kids and no real prospects. I don't need to not look like a girl right now. But fuck it...I'm cute bald, with no eyebrows, no eye lashes and sick eyes...guess I can figure out how to be cute with no breasts and burnt ass skin! Sigh.
I think I said on the last post, weekly chemo, working fulltime plus doing much of the same stuff I was doing post work prior to cancer is catching up with me. I felt bad Sunday, Monday, and Tuesday last week. Felt good Wed and Thurs during the day and super, crazy, delerious exhausted by the time I got home from work (which is generally 6/7pm). Clearly my Wed drs appt made it worse on wed, but again what can you do. I have approxiamtely two months to wrap my mind around the fact that surgery is really going to happen, nothing was ever really cleared, and on top of poisoning my body from the inside out, I know have to agree to burn my body from the outside in. What the Fuck!
My hands and feet are numb and tingly most of the time. The bottom of my feet are freckly and my hands look dirty cause they are darkening in spots, but not all over. I haven't had an appetite, but eat to eat cause I have to. Haven't had the energy to cook, even tho I want real food. My stomach hurts on and off like it has since I started TH, but not as bad as in the beginning. I'm trying to stay positive, have fun, do fun things, and just be me. But I'm worried about a lot of stuff right now. How surgery is going to go. What I'm going to do if the new CEO blocks the exceptions my company was going to make to allow me to get paid for the time I'm going to have take off for surgery, which I don't have as I been with the company for less than a year and have had to use all of my time for chemo side effects, drs appts, etc. If not, I'll get a week or less of paid time and whatever else I have to take, I'll just be assed out. Hell if the new CEO doesn't just try to fire me out right. Whatever happens doesn't worry me too much, if it happens it was meant to be and I'll get through it. Other people have. It would be a hard thing for me to deal with since I've been working and pretty much taking care of myself for a very long time, but again, fuck it. I'll do what I have to as always and it will be what it's meant to be. At the end of the day, I'm good at what I do. I'm pretty good at who I am and am working to be a better me. Cancer won't stop me and neither will anything else short of death. With that said, I'm out.
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