No word yet on the results of my pelvic ultrasound and sonogram. I suppose “Tuesday at the latest” might have meant this Tuesday? Like tomorrow? Yes? I’m giving them the benefit of the doubt. Actually, not really. They should have sent my oncologist the results last week. Guess who’s making some calls tomorrow? That’s right! Me! I wanna know what’s going on down there, darn it!
Last night I was looking online at possible surgeons here in New York that I might be able to speak to about breast implants. As I think I mentioned before, I have slowly been letting the idea of getting (small!) implants begin to work it’s way into my psyche. At one point I was totally opposed to the idea, but the more I speak to people and hear that I “don’t have enough tissue to donate” I really don’t feel I have much of a choice except to broaden my horizons a little bit. At least for now. So, I have slowly but surely been researching my options, knowing full well that this surgery is in my future, but unsure of exactly when in my future it may be.
I found one site last evening that looked pretty good. The surgeon in question had a very good reputation, and even a nice little blurb on their website that was just about breast cancer reconstruction. I thought that was a good sign. I wrote to their contact email about coming in for a consultation. I gave my whole history with breast cancer and said exactly what I was looking for. Someone wrote me back and said they would call me in the morning to set up an appointment for me to come in and speak to the surgeon. Great! Except it wasn’t.
This morning I got the call. Everything was going fine until the receptionist mentioned that she would need a credit card number to secure the appointment. I asked how much a consultation with the doctor was normally and she said $200. Two. Hundred. Dollars. To sit and talk to someone about breast implants. Not even to have anything done. Just to talk. Two hundred dollars. Okay. Fine. So then I said “I guess your office doesn’t deal with Medicaid then?”, hoping that maybe, just maybe I would get lucky this time. And then she said “Oh. You’re looking for that kind of doctor?” Excuse me? That kind of doctor? Congratulations in instantly making me feel like a piece of crap because all I can afford is “that kind of doctor”. I said that the call was over and hung up the phone. I know that was probably not the right thing to do but I was so upset at her comment that I knew if I remained on the line I would start to cry.
Let me take a moment to explain something here. It’s not easy making these calls. It’s not easy talking about my breasts being removed. It’s not even easy thinking about it, so whenever I have a minor setback like this, something that to anyone else would probably be small, it feels huge to me. It feels awful, like nothing will go right ever. It’s just a feeling, but it’s what comes up for me and I’m trying to just be aware of it and move on. I had just hoped that someone who had read my medical history and responded to the email in which I had written about my having the BRCA2 gene (and breast cancer) might have been a bit more sensitive to what I was going through and might not have made a remark like that.
Later I was talking to a friend and he gave me some good advice. He said not to let her get in my way. After all, she’s not the surgeon. She’s not the one who would be giving me the procedure or who I would even talk to to begin with. And he’s right. It’s just now I’m to embarrassed to call back since I hung up on her. Guess I’ll just have to get over that and call her back. It’s the only way I’ll get in for a consultation. And I guess I’ll be paying $200 out of pocket just to talk about a surgery that I have no idea when it will happen or if I will actually get implants or not. I guess maybe this is me learning to take responsibility for my actions and do the right thing. I just need a few more hours to calm down…
Sort of, anyway. Things went well at ye olde checkup this afternoon. I got my Medicaid all squared away and saw Dr. Deva for another fun checkup, haha. I told her that I’d been having weird stabbing pains from time to time in the breast where I had surgery and she informed me that scar tissue can sometimes expand and contract when the weather is changing, so oftentimes people who have had surgery can tell when say… it’s going to rain or something like that. It’s like having a bad knee but instead I have a bad boob? Basically.
She asked me if I was any closer to the big decision. You know, that whole double mastectomy thing. Her words were “sooner rather than later”. I asked if since I am on Tamoxifen perhaps that is keeping anything bad at bay for now? In a way it is, but in a way it’s not a guarantee. It’s doing 50% of the work. So there’s still a pretty big chance that maybe it won’t keep all the bad stuff suppressed. The upside being that I go in so regularly for checkups that if anything did come up we would catch it early like we did last time. The downside of that being that we would have “caught’ something, in this case cancer. Yeesh. I told her I’m being proactive and looking into as many different areas as possible in regards to tissue donation. I am also opening up my mind (and heart) to the possibility of accepting implants instead of using my own tissue, which is seeming more and more impossible as I don’t particularly want to gain 20 pounds just to have extra boob tissue. But we’ll save that for another entry!
I’ve had a cold for a little over a week so obviously those darn white blood cells are still not where they should be. Me being the genius that I am I walked out of the RLC without my prescription for antibiotics that Dr. Deva gave me! ARGH! I’m hoping they can fax it to me tomorrow as I leave Thursday morning for Calgary. Better safe than sorry on that front. It’s taking me a long time to fight this thing off so I’d rather be a little overly cautious than take off on an airplane and end up sick far away from home. At least it’s not like the old days when I traveled with all my needles and injections for neutropenia! I’d rather swallow a pill than shoot myself in the gut again! Though I guess it is nice to know I can do it if I really need to…
Now I need to make an appointment for another pelvic ultrasound and that should do it. Good times! As for everything else, the weather here has started to cool down once again. Personally, I love it. That little bit of cold in the air was all I needed to make me march right over to Mud and get my favorite green tea in the world with LOTS of honey. Delicious! Surely that’s as good as antibiotics for healing what ails you? Right? Right!
Well that was a close one. I’ve had a renewal form for my Medicaid sitting on my kitchen table for about a month now with a looming renewal deadline of September 15th that I waited until the last minute to take care of. Luckily the wonderful financial advisor at the RLC managed to get a wee extension so that I can come in and sign all the forms they need to get me back on track. It just so happens that I have one of my lovely check-ups next week anyhow so I’ll just make it a double feature! Two birds, one… um, Medicaid? Oh you get the point.
Close one. I’m so bad about checking my mail and as a result sometimes I have a few days worth of mail piled up inside when I do. I went down to take a look at what was in my mailbox just a minute ago and my heart skipped a beat for a moment as I saw what seemed it could only be a letter from Medicaid. Well, this was it. The moment of truth. Time to start researching HMO programs after I see which ones they would be offering (forcing) me in the letter. Turns out it was a notice to renew my treatment plan under the Medicaid Cancer Treatment Program. Now I’m confused. When I called Medicaid and spoke to two different people they said I was on just the “straight” Medicaid. I asked if I was perhaps under some kind of cancer Medicaid as I had been lead to believe that I was and was told that I was not. I’ve had to renew my Medicaid before and it’s always being renewed under the Cancer Treatment Program. It was explained to me that so long as I needed any kind of treatment for breast or cervical cancer I could be covered. Seeing as how I still have to take Tamoxifen for the next three years, have checkups all the time, and now a looming double mastectomy, I would hope that I qualify for a renewal. Normally the good people at the RLC help me out with this so it’s time to give them a call. I hope this means that I won’t be one of the people booted off of their Medicaid, though I have a feeling no one is immune.
Guess who had an MRI this morning? Me! How did that happen?! Turns out the first surgeon I had a consult with at Sloan-Kettering went ahead and scheduled me for an MRI so that I could get in the system there and get up to date. That was actually good because I needed to get one anyway but I just kept forgetting to make the appointment. I’ve only had an MRI one other time and that was when all the cancer nonsense first began.
I have to say, my last two visits to Sloan-Kettering have been nice. Today was particularly nice. I know that’s strange to say considering what I was there for, but it’s true! First you go into a dressing room and get into a gown. I got a lovely new pair of those non-slip surgery socks (score!) as well. After I left the changing room a nurse came out and gave me a wonderfully toasty warm blanket to wrap around myself. It felt like it had just come out of a dryer which was so nice. We went into an examination room where I had a seat. There are some people who shine in their fields. I have to say that the oncology nurses I have met are nine times out of ten truly kind people. The woman today was no exception. We had some good laughs and then she put an i.v. into my arm. Or rather, the beginning of an i.v. The little end part. Oh you get the point! It was cool the way she found my vein. She placed a heat pack on my arm just at the bend in front of my elbow where normally they draw blood. I guess the heat made my veins show up better because soon it was needle time to get the i.v. in there.
After that I made a quick pit stop to the restroom because once you are in that machine there is no coming out again. The whole thing takes around 40 minutes. First you are scanned to see if you have any metal on you anywhere. Then you wait for clearance before entering the room where the MRI machine is. After that I was instructed to to lie face down on this sliding table which can recess back into the machine. The technician gave me earplugs (which keep out approximately zero noise) and I laid face down onto the sliding table. I had a nice little head rest so it wasn’t too bad. She put a warm blanket on top of me to keep me comfortable and then told me to stay still as best as I could and breathe normally. Now, I take very deep breaths “normally” so this gave me a momentary brain meltdown as I tried to figure out what a normal non-deep breath might be like. I think I put a little too much thought into it in the end, haha.
You can hear the technician when you are alone in the room. She came on to tell me that the first part of the tests would be about half an hour, then someone would come in to put a dye into my i.v. for the second part of the tests. Each “test” is divided up into 3-4 minute cycles. That’s three to four VERY loud cycles. VERY. LOUD. The table I was lying on slides back into the machine and then I was alone in my little capsule for the long haul. If you breath too deeply or move they have to start all over again. I think the last MRI I had I was lying on my back which was a very different experience. On my stomach I didn’t really think about the fact that I was essentially shoved into a tiny crawl space which I could not move out of. And believe me when that machine gets going and you hear the sounds it makes you are thinking about the nearest exit. I say that, but then I fell asleep for part of the test, hahaha! I remember last time I had an MRI I had too much time to think about being in that little space and I just told myself that astronauts do it all the time and that I am a very brave astronaut. I told myself that today as I went in just in case! Sometimes we all need to be a very brave astronaut. Even when we’re not having a test done.
I guess now is normally the part where people worry. The waiting to find out if they saw anything in the scans. This part doesn’t get to me for some reason. I feel calm. I feel fine. I’m going to get on with my day and enjoy the sunny weekend ahead! I hope you all do the same, too!
I guess I got my hopes up a little too high this morning. I woke up feeling pretty sad inside. Yesterday I went to see my therapist and I’m pretty sure most of the time I was there was just me crying. I suppose it was good to be able to let it all out in a safe place. The nurse I saw the other day said it’s really great that I’m already seeing someone and can work through what’s going on. She’s right. The “work” we are doing consists of getting me through this feeling I have of not fully accepting what’s going on. I’m sure you’re all so tired of hearing me talk about this but this blog is the only place I ever turned to work through all the things that are swimming around in my head and so I hope you will forgive me if I repeat myself or seem to be going in circles. I just can’t seem to accept that this is something that I have to do. Mainly, because I don’t have to do it. Unless I want to live. But then we’re not really sure I won’t if I don’t. Do you see how I get all tangled up inside over this? It’s a pretty big thing to do over something that isn’t certain.
The way I got my hopes up was that I called that place in New Orleans I mentioned a few posts back. I had already been crying before I called so I had to do some serious deep breathing to calm myself down. Anytime I go online to look places up and start seeing the technical descriptions of the procedures, the before and after galleries… I usually have a wee meltdown. Every day I am a second away from crying. I’m pretty sure I’ve cried at least a few times every day for the past four weeks. Crazy, isn’t it? My brain could handle cancer. It could handle going through treatment. For some reason it just can’t handle this and it hasn’t even happened yet!!
Anyhow, I called the place in New Orleans because the doctors there have a special kind of surgery they pioneered that takes tissue from donor sites on people who have been deemed “too thin” to spare any tissue for reconstructing their breasts. My first question, and the one I had to say ever so slowly so that I would not cry while asking, was did they take Medicaid? I knew even before I finished my question that the did not. And no, they don’t. They are not accepting any new Medicaid patients at this time. I asked if there was any way they could give me an idea of how much something like this might cost me if I paid out of pocket. The woman was very nice, but no, she could not give that information over the phone. I thanked her for her time, hung up, and cried. I guess I had it in my head that I could go here somehow and that everything might work out. It’s not really fun to not have much money when something like this comes up. I hate talking about money at all. Ever. Yet there are certainly times when it would be nice to just be able to do what makes you feel most comfortable without even thinking twice.
All I know is I DO NOT want implants. That is NOT an option for me. I do not want anything fake like that shoved into my body. I’m sure it’s a perfectly fine option for a lot of people out there (though now that I see what it entails I REALLY can’t understand doing this for cosmetic reasons!!!) but not me. It just doesn’t feel right in my gut. That’s the only way I can explain it. It doesn’t feel like the right thing to do. I refuse to just accept that it is the only way. This is a HUGE deal and I will not settle for something I am uncomfortable with. I am going to find a way to do this that I am comfortable with or I simply will not do it. End of story.
Maybe it’s silly to apologize to you all for my ramblings. You’ve all been so great to me over the years and so unbelievably supportive. I just feel that I’m re-hashing all the same things over and over on here lately but that’s because I’m trying to make sense of it all and figure out what is best for me. Please be patient with my confusion and frustration. This blog is my safe place. The place I created to try and work through what I thought was the craziest time in my life. I suppose now this is that time, and all I can do is wander along till I find out where I’m going.
Today I walked 45 blocks uptown to my appointment with my self selected plastic surgeon at Sloan-Kettering. I felt like taking a nice brisk walk uptown would help clear my mind up a little bit so that I would not have a complete meltdown upon my arrival at the surgeon’s office should my visit turn out to be anywhere near as frustrating as last time. The walk was nice. It went by quickly. I felt like I was in a really bad mood and angry at everything until I realized that was just fear. It’s that same fear of the unknown which is always just beneath the surface these days. The fear was making me upset more than anything so I kept right on walking all the way to my destination, determined not to let one appointment ruin my day.
I have to say, I was pleasantly surprised at my visit. The nurse for this particular surgeon couldn’t have been nice and unknowingly proved what I have been trying to say for weeks now: that sometimes you just click with someone and it makes all the difference in the world. We were able to laugh a little, speak a little French (!!), she seemed to genuinely care about who I was as a person. Most importantly she let me cry. I can usually hold things together but when I start talking about the logistics of all of this, the reality… that’s when I tend to lose it a bit. She was super supportive and sympathetic to what I’m going through. What more can you ask for in someone who is supposed to be on your side and helping you through a terrible time in your life? She even wrote down the name of the blog and said that she’s going to check it out! See! A connection. It’s what I was waiting for.
When the surgeon came in I pretty much liked him right away. He let me ask tons of questions and was really upfront with me about things. He also had a sense of humor which I can’t even begin to say how much I appreciate. I told him that silicone and saline implants are not an option for me. Don’t like ‘em, don’t want ‘em. I feel like no matter how “real” they feel they don’t really look right. There’s not a natural sloping of the breast when you look at it from the side. It’s just one big circle. The bottom line is, it’s not for me. I want to know about using my own tissue to make the new breasts. He is now the second surgeon who has informed me that I might be too skinny to actually have any donor tissue to use on my body. What?! This is where I think it’s hilarious how we can see ourselves versus the reality of things. I explained to him that I most certainly felt my thighs jiggling all the way uptown so perhaps he could take some from there. He showed me where the incision would be made and how much he would be able to take. I was surprised to see it was not much at all. What the heck?! He said (half jokingly) that maybe I could put on 20 pounds and come back in for a re-evaluation. Who knew?! I may, however, be a candidate for taking tissue from my upper butt (ew, gross, I know) though. He gave me the name of two people to talk to who could best evaluate if I’d be a good candidate for this and who could show me their before and after pictures.
The surgery itself would take a LONG time. I’d be out for quite awhile. Not to mention 4-5 days in the hospital and about a six week recovery time. There’s a big difference between getting implants and using your own tissue to reconstruct a breast. Seems like the tissue option is a wee bit more complicated. The other thing I asked about was keeping my nipple. Not to gross anybody out (though if you’ve read this blog for any substantial amount of time I imagine you’re pretty tough by now!) but they have this thing called a nipple sparing mastectomy where they can sometimes keep your nipple. Great! Only problem is that you can’t put it on until two or three months after your surgery. Dear Lord. I have no idea why you have to wait so long, but that almost made me flip out as well. It’s like every time I start to wrap my head around one terrible thing there’s another one right around the corner.
I did feel like I connected with this surgeon though so that was a relief. His nurse (I feel terrible I forgot her name. I was upset!) said that she didn’t think there was anything wrong with me talking to another surgeon if I wanted to. That was in regards to my previous visit a week or so before. Finally! Somebody who understands what I’m trying to say! I just want to feel like I click with the people who will be doing this, wherever and whomever they may be.
I asked the surgeon if he could just give me more of an idea of when I should do this. I asked his nurse too and they both said the same thing: it’s an elective surgery so really it’s up to me. That’s the hardest part about all of this. It’s what makes it so confusing. It’s like I’m filling my head with all of this traumatic information that makes me upset but for what? For something that I could do? Should do? Might do maybe some day? It’s almost like it doesn’t feel real, like I don’t really have to do anything if that makes sense. The nurse today said that it’s not really a question of if I’m going to get cancer again, but when. For some reason that doesn’t help me make a decision any faster. I almost feel like it would be easier if someone said “okay, you have to do this by next month or else. End of story”. Maybe then I could spring into action. Right now it all feels surreal.
I’m going to talk to the butt specialists (sorry, I had to) and see what they have to say. The surgeon also said that there are people who use the fat off of your body to make new breasts. Maybe they could find some on my to use if we collected it from all over! I’ve got some more jiggly bits that I’d love to contribute to the process! I’m going to look up this procedure as well. I also want to call around to places outside of NYC and just see what they have to say. I feel like I can’t possibly make any kind of decision until I’ve gained as much knowledge as I can. Then I’ll have to figure out what’s best for me. At the end of the day that’s what it all comes down to. What can I live with that works best for me? The key word being live.
Until then, I may as well live it up and eat whatever the heck I want whenever I want to! Yeesh! In all sincerity I was just relieved to speak to people who truly cared about me today. I can’t tell you what a difference that made to how the rest of my day went after I left the hospital. It was the difference between me feeling catatonic the rest of the day versus me grabbing a juice, walking 45 blocks back downtown, singing a little as I went, and smiling when I thought it would be impossible.