It's been another long hiatus. I should have some kind of resolution to write more often here about my comings and goings. I feel like I lead a fairly predictable life so I feel like there's not a whole lot to say!
After my last post, I had another scan 3 months later and it was not good. I went back to my FOLFIRI+Avastin regimen. I did consult with several other oncologists again, but decided to stick with what had been working rather than try anything new. I did that for 3 months, and had another scan maybe 3-4 weeks ago.
It was sort of so-so. Things didn't seem to get worse, though they didn't get amazingly better. Certainly not the "complete" response I had the first time. This is of course not good news, but not the terrible news I was expecting. I am constantly steeling myself for the worst possible news because it then makes anything else good news. I'm getting another 3 months of the same therapy to see how it does.
Essentially the goal of my treatment is to keep the disease from getting worse. There is no cure for it. The best anyone can really hope for is to keep it at bay and not killing you for as long as possible. Of course, "as long as possible" for a 27 year old has a different meaning that that for a 72 year old.
In the interim 6 months or so I've had to deal with the unfortunate realization that I wasn't "in remission". It was sure nice at first to greet the total radiographic response as evidence I was another wonder case. But it wasn't meant to be and it ended up being painful having to re-accept that indeed I (and Emily) would be dealing with this likely for the rest of my life.
I am constantly thinking about all the bad things that are just waiting around the corner for me. Right now I am on the 1 of 2 possible chemotherapy regimens that are broadly known to be effective against my cancer. It's also the one of two that you can take indefinitely, so long as you can put up with it. The other one has a sort of lifetime dosing limit; eventually, you just have to stop taking it because you will be unable to deal with the side effects further and/or it will kill you on it's own. So, when/if my current chemotherapy regimen ceases to work, I'll have to switch to the other one. And even if it would work forever, I'd eventually have to stop. Then we're in clinical trials territory, I would assume. Anyway in my head all of these logical lines mostly end up with my untimely death. Kind of sucks really, but at least I've accepted it. I'm not sure everyone else is as okay with it as I am, though!
Of course, I'm not looking to die anytime soon and will be willing to subject myself to way more than most people with this disease would think of, much less be physically capable of handling. And of course I'm hopeful that the current course of treatment continues to be effective for the long haul. It sucks, but if I have to spend 40% of the rest of my life getting chemo, it's definitely worth it for the other 60%. Broadly, I'm happy about all the things in my life. It's just that damn thing called one's health that I'd like to change a bit.
Wow. You haven't vented these type of deep true feelings in some time. Despite all, you continue to display and maintain the courage that Candice and I so deeply admire about you. We are happy to hear that you are happy about all the things in your life. The rest I fail to have words for right now. It is sooooooo hard to relate and put ourselves in your position. It seems you have been fighting this for a lifetime. We like that you can share these feelings with us. We as a family remain helpless to help you physically (health wise), but I feel we have in the past and will continue to in the future (hopefully a long future) to offer you some good mental health (and you know how mental our family can be, especially when we can actually make you do the Happy Dance). Overall, you can't beat what family can do for you. I have seen your spirits raised high when you are home for those short times and we are glad we have the chance to spend them with you. We love you and all we can really say is continue to hang in there as you have so bravely in the past.
ReplyDeleteWith hope and Love, John and Candice
Dear Son,
ReplyDeleteThank you for sharing this information and the ensuing emotions involved in putting this down for all to see. You know how much everyone loves you. You are an inspiration to us all. I will always try to be as strong as you are. You've taught me there really isn't a better way to handle all of this, except to accept and fight back. You are always on my mind, and in my heart. No matter what, that is where you will remain.
I Love You,
Mom