O.N.E. Y.E.A.R.
I haven't posted an update in a while, nearly two months, because....well, I haven't felt like it. :) And really there wasn't much to write home about. I'll bring you all up-to-date, but let's start out with the real headline. By the time most of you are reading this it will be Tuesday, Nov. 28. And I will be ONE YEAR CANCER-FREE.
I thought the clock didn't start ticking until you were totally done with treatment. Turns out it starts when you have surgery -- at least for my situation. My mastectomy was one year ago. Seems crazy that it's already been a year, but pretty exciting.
Why? For starters, with my cancer's set of characteristics, I have a 30 to 40 percent chance of reoccurrence in the first two years. Yeah. That number is high, right? That means I'm halfway there. One down, one to go. AND those statistics don't take into account the one year of Perjata infusions I'm currently doing every three weeks -- a new practice for which there is no long term data. So, we can only assume and hope that doing a year's worth of both the Herceptin and Perjata for people who are HER2 positive will decrease the chance of reoccurrence.
I have three more infusions of the Perjata -- Thursday, then two in January, THEN I AM DONE. After that I can remove my port if I want. Yahoo. This thing makes it sooooo much easier when I need it, but I can't wait to not need it. I'm not a big fan. Of course, I say all this knowing that by the end of January there could be some new study to consider that includes more treatment.
After my final infusion, I'll start coming back every three months for blood tests, which can detect if the cancer has reappeared in my blood, bones or liver. Unfortunately, I would only know if it had returned in my brain or lungs, two of the most common sites for reoccurrence, if I start having symptoms. Can't they scan for that? Yes, but doing several scans a year can give me cancer. So, you just wait, take care of yourself and hope for the best. And have a panic attack every three months.
In the two months since I last posted, I've continued to heal from my reconstruction. My surgeon said everything is looking good and I'm healing nicely. At my last appointment a couple of weeks ago there was still a little fluid on the right side, which he said is not a surprise considering I use my right side more, being right-handed, and it's the side where I had radiation. It will just take a little longer to heal. I'm still restricted in how I pick things up and how heavy they can be, but he expects to give me the green light to do whatever I want, however I want, when I see him in January. I cannot wait to stretch. It sounds silly, but I feel like I've been hunched over for the last year and especially the last two months. I can't wait to really stretch my arms and back out. And go to the chiropractor. And maybe get a massage. And pick up my kid. And I guess have no more excuses for not exercising.
I've been battling a chest cold of some kind basically since my last post. At one point it was so bad I went to the ER on a weekend, but they told me it's just a bad virus that's been going around that lingers and was hitting me particularly hard because my bod is beat down. (Well, they didn't exactly say it like that, but you get the idea). And linger it has. I'm still coughing almost two months later. Somewhere in the middle of there it was really bad for a few days again -- I don't know if it was the same thing or a new virus. Honestly, if James didn't have it and if my oncologist hadn't ordered a chest CT, I'd be concerned it was more than just a virus. Anyway, while it's not the worst anymore, I hope it leaves the building soon entirely.
I also ended up in the ER a different day after side effects from my infusion had me concerned I had cdiff again. My doctor didn't want me to mess around, so in I went. Fortunately, while it was an unpleasant weekend, it was just a Perjata side effect.
Other than that, not much is new with me medically. I've continued getting my monthly shots and taking my daily pill. My hair is really coming in now and it's really curly. Crazy curly! It will be interesting to see if it stays. Maybe it will and I can finally match my mother and daughter.
I went on a trip to Florida a few weeks ago that was incredible. A reunion of college friends for a few days that was good for my mind and body and jumpstarted a bit of a change in perspective for me. Though I haven't talked about it a lot, I've had some pretty dark days in the last few months. Maybe that goes without saying, but in some ways the "how do I deal with life 'after' cancer" has been harder than going through chemo. Because now what does life look like? What does it mean? Not will the cancer come back but WHEN will it come back? Will I see James graduate kindergarten let alone high school? You know, light stuff like that. Someone can tell you not to think that way, but you can't help it. And you can't just decide not to think that way.
Maybe it literally is, but it's a bit like PTSD in a way, I think. You can't really process it while you're going through it (which I still am I guess), then life begins to shift back to like it was before. But it will never be like it was before. Everyone around you moves on with their lives, as they should, and though your hair might be growing back and your skin is no longer gray, you are just begin to deal with the questions and emotions and fears and anger and you name it. At least that's my experience and the experiences I've read of some other people.
Though I sat here with a filled prescription I didn't take for weeks, I eventually started taking anti-depressants a couple of months ago. Even better -- anti-depressants that have a side effect of helping with hot flashes. I guess I didn't want to talk about it because I saw it as a sign of weakness (and sometimes question whether I'm sharing too much). And part of me thought "SHOULDN'T I be feeling all these things?" but after a particularly difficult morning, during which I thought I might literally explode, I decided to take them.
I don't want to give pills all the credit, but I do think it's helping, and has helped put me in a place mentally and emotionally to do the other things I need to do to help me. Turns out watching TV, eating whatever you don't have to actually cook and being grouchy does not help you heal. Well, maybe it helps some people heal, or at least feel better for a day or two, but it is not a long-term solution for me. And I'm realizing, maybe it's OK that life won't be like it was before. Maybe, in most ways, it can be better than it was before. I'm still figuring that part out.
So, it's been 17 months since I was diagnosed and one year since they got that crap out of my body. I'm by no means done -- physically or mentally -- but it's insane to look back. So much has changed in the last 17 months and even the last 12. I've said it a lot but I can't imagine having survived all of this without so many of you who have rallied to help in one way or another. So many friends and relatives. Most of all Daniel, who did not sign up for this shit. Of course, neither did I.
Fingers crossed I have very little to report in the coming months and soon there will be no need for this blog at all. I hope everyone had a nice Thanksgiving. I'm so glad I'm seeing how much I have to be thankful for.