Back when I first started blogging about my breast cancer journey, I wasn’t writing anything that I wasn’t quite a few days (or weeks) removed from. But that has changed since then for a couple of reasons. One being, I’m all caught up now. And two, I think it’s only fair that those of you on this journey with me get to have some taste of the emotional roller coaster ride that this has been. I mean, I’m having to live through this bullshit, so why not give my supporters at least a watered-down version of all of it as well?
So. Here we go with another life-as-I-know-it update.
I came very close to completely losing my shit at work today.
But, first, let me back up a little bit. If you recall from this post where I announced my preliminary results saying that I would not need chemotherapy, we were still waiting on one more Oncotype test just to double check that the first one was correct. Dr. Sammons, my oncologist at Duke had to send this one off to some independent lab because this was the one test they could not do in theirs. And they mailed it off two weeks ago today.
Today, I was supposed to get those results back. They were going to say 14% just like the last one, and I would be able to freely schedule my second reconstruction surgery without any caveats (such as only being 99% sure I don’t need chemo vs. 100%, but I’ll get into that later), start my hormone therapy and basically move on with my life. In fact, this was the first phone call I wasn’t waiting on with baited breath because I knew it would come and it would say exactly what we needed it to say. It was going to be a great day!
Anyway, around 3pm this afternoon, I got a phone call from Duke. The woman on the other line (not Dr. Sammons) told me that my test has been held up because the lab needs to confirm that this block isn’t the same as the last one they tested. Since these tests are rather expensive, they knew I would run into insurance issues if they duplicated the test. And, I must say, as pissed as I am right now, I have to appreciate this. Instead of just blindly testing it and leaving me to pick up the pieces later on and fight with my insurance company over it, they checked just to make sure I wouldn’t end up footing the bill on this $4600 test.
Apparently, all it takes is a confirmation from Dr. Sammons that this is a completely new site and they will be on their way with the new test (this is my current understanding). But I do wish it hadn’t taken them TWO WEEKS to come to this conclusion. And I have no idea how long it will take them to conduct the test if/when it gets taken off hold. I’m assuming another two weeks, but I could be wrong. I hope I’m wrong and it is less than that.
SO, that’s where we are on that.
Now, onto surgery scheduling. I still have one more on the horizon to finish up my breast reconstruction.
Up until now, my plastic surgeon’s office has been WONDERFUL. Up until now, they’ve been on top of me making sure I got the care and support I needed. Up until now, I thought it was going to be as easy as they told me it would be to get my swap surgery on the calendar.
When I had my last fill, they told me a month from then, I’d be able to schedule my surgery. Well, a month came and went. So, on August 17th, I called them and told them I was ready to schedule my surgery. They transferred me over to the Insurance Coordinator who told me she’d have to get a form from the nurse that cleared me for it. I asked what I needed to do to get that and she told me she would get on it and the next time she called me back would be with a surgery date.
The following Monday, I thought maybe I should call and ask to speak to Michelle, my favorite nurse, just to maybe help things along. When I called, I was informed that Michelle no longer works there, which was a complete shock to me and very disappointing because I loved her, but I asked this receptionist what I needed to do to get my surgery on the calendar and she told me there was a note in my file and they should have something in the next couple of days.
Well, the “next couple of days” came and went. So on August 27th (Monday a week later), I called them again. And again I was transferred to the Insurance Coordinator and again I was given the whole “I need to get a release form from the nurse” spiel. I politely informed her that this is what I was told when I called over a week ago and asked, again, what I needed to do to get this moving forward. She said she would handle it “today” and get back with me. And three days later, I still haven’t heard from her.
And now, I can’t help but feel LIVID… THIS WAS SUPPOSED TO BE THE EASY PART!!
I have had exactly TWO things go my way since this process began: (1.) my doctor catching it to begin with and (2.) the fact that I (99% sure) don’t need chemo. EVERYTHING else has gone wrong or taken longer than I was told it would. This reconstruction was supposed to go smoothly. And now that I don’t need chemo, I was going to get to have it done faster. No waiting for rounds of chemo to be finished and my body to heal from it. But now my plastic surgeon, who led me to believe that this procedure and her office were right for me, has stuck me with these Tupperware lids for boobs and left me high and dry. And for how long?? How many phone calls is it going to take to get this surgery on the calendar?! Am I going to have to storm into one of their offices and demand they put me on their schedule? That’s not exactly the type of relationship I want to have with a facility that’s going to be cutting me open.
I feel like I was tricked, and it honestly makes me cry every time I think about it. My chest STILL looks like an episode of Botched. And I have to look at it Every. Single. Day. I have to wear loose-fitting tops because form-fitting tops outline the shape of these monstrocities, which is not a normal shape at the moment. Dr. C left tissue in certain places so they could “relocate” it later for a more smooth transition from chest to implant, which totally made sense. But now I’ve got some ugly-ass side boob going on in addition to the unnaturally round shape of the expanders that DON’T MOVE AN INCH. They are hard as rocks, y’all. In case you wanted to know.
I used to joke about my new “boobs” being the sports bra I always wanted, but now it just means I’m always uncomfortable. I never go through a point in a day when I don’t “feel” them. They just sit there all day every day. My size D balls of plastic rocks that I have grown to despise.
And, I know, I KNOW there are women out there who are stuck with these things MUCH longer than I am “supposed” to be and are probably rolling their eyes at this post because they all know the discomfort I am feeling and probably had to deal with them for the better part of a year and I should just stop my complaining. But, like I said earlier, not needing chemo or radiation has literally been one of the only gifts I was afforded in this process. So, please, just give me this one. I realize I’m being whiny and over-dramatic about it, but this blog is all about the emotional roller coaster I’m having to deal with. Tomorrow, I may feel better about it. But, for now, I’m bitching because it has been a rough day. I thought these days would be over by now. I thought all of this would be over by now, and the fact that I still haven’t found the light at the end of this tunnel is upsetting. To say the least.
Anyway, what am I doing to push forward?
I’m going back to Dr. Robinson on Tuesday. I met with him about a week before my mastectomy. He’s a plastic surgeon at CMC who does DIEP flap reconstruction. This is the procedure where they take belly fat and construct new boobs out of it. I had originally decided against this because it would have derailed the first surgery I’d worked so hard to get on the calendar, and I wasn’t quite prepared for that amount of recovery time. But, now that I am looking into finding another surgeon and am not on a HUGE time constraint since there’s no cancer to contend with anymore, I figure, why not?
I’m not 100% sure he will be able to help me now that I am knee deep in another reconstruction process, but I’ve said it before and I’ll say it again: Action helps me feel better. I need something to be happening when other things aren’t going my way. I have already talked to my insurance to make sure they will cover me switching surgeons, and they will. So, I’m going to hear Dr. Robinson out again and ask more questions this time. If I decide to go through with it, I’ll have to take short-term disability from work because the recovery process will be worse than the mastectomy, so this will be a huge decision to make. But I’ll keep you posted.