Malia is a long-time full-time RVer who was diagnosed last spring with terminal lung cancer. She is graciously sharing her journey with us. See her previous post from August 30 here.
by Malia Lane, Malia’s Miles Blog
All of my energy for weeks now has been taken up with getting my book finished and ready for Kindle and self-publication. Even though I haven’t talked much about it publicly, this is not a new project – it’s something I started almost two years ago but I’ve dawdled and found excuses to do anything except that all this time. Yet as soon as I got the terminal cancer diagnosis, I knew that book was my priority and that if I died without at least trying to get it out there, I would regret it once I cross over.
My greatest hope always has been to inspire other people to follow their own dreams, particularly women, especially those who feel like they can’t do it alone. I hope that my example will demonstrate that doesn’t have to stop them, and my book goes into some detail about how I made the biggest of my crazy dreams happen, miracles and all.
At this point, I’m almost to the finish line on that and finally have some time and energy to do an update for all the wonderful friends who have kept me in their prayers and continue to be interested in what’s going on with me.
The days of my being able to multi-task are over as I pretty much have to concentrate on doing one thing at a time and then go take a nap. It’s definitely a new way of life that I’m living now. I’ve never had any heavy or chronic medical problems before and whenever anything like that did come about, it was pretty easily and quickly handled.
Not so with terminal lung cancer in this advanced stage. When I started having pain in a new place on my neck or in my ribs or on my foot or wherever, I’d ask my hospice nurse what was causing it – why this or that was happening – was the cancer spreading or what. She’d basically say, “Malia, you have cancer marauding through your body and it manifests itself in many different ways and makes many different sneaky attacks. But don’t worry or stress too much. We are here to manage your pain and keep you as comfortable as possible and we’re available 24 hours a day.” Holly always has a way to calm me down; I just love her so much and feel blessed to have her at this stage in my life!
Other than the obvious fact that having cancer makes you feel like crap, there seems to be no rhyme or reason for how I feel on any particular day. Physically, since the tumors are growing at a pretty fast pace all through my neck and throat lymph nodes, that tension is what is causing the pain I feel on a regular basis in those areas.
The latest development is that it has broken through the skin where the biopsy was done. I have come to believe that was a big mistake since it weakened the skin there and made for a path of least resistance. It’s leaking and pretty gross, but hospice here has been phenomenal. Besides the fact that they come out twice a week to change the dressing, they have basically kept me pain-free on drugs – opioids, specifically. All my life I’ve avoided those things like the plague, but the last thing I’m worried about now is becoming addicted to anything.
As I reported in my last post, I found that cannabis products like Rick Simpson Oil just doesn’t cut it for me. Although it does help manage pain, it seems that even though most people have success with it for use for nausea and to increase appetite, it had the exact opposite effect on me. I thought maybe I was just using too much, so I got off of it totally for a while.
After a few weeks, I tried again at lower doses, but still noticed the same negative effects, as well as keeping me feeling knocked out and barely able to function. All without the desired side effect of getting me high – bummer! For some reason, the Percocet does not totally disable me anymore and it just manages the pain. I am especially thankful for that because I’m a total wuss when it comes to pain.
THE BIGGEST CONCERN at this point is that the growths could start affecting my ability to swallow. Since I have to be able to swallow four ounces of the Death With Dignity concoction on my own, that freaks me out. I always figured I’d know it was time to go once I could no longer do basic things on my own, like get out of bed, shower, prepare meals, etc. But it sounds like I might be faced with the decision to take the concoction earlier based solely on my ability to swallow, no matter how I’m functioning or feeling otherwise. Yet another example of why it’s ridiculous to me that they won’t make an injection optional, but that’s still considered suicide. They’re still afraid of the potential for murder of people who are not ready to go. I think that argument is preposterous, but not only that, there’s still talk sometimes of trying to repeal the Death With Dignity law completely!
The only thing the oncologist can even suggest at this point is radiation treatments which might shrink the growth and improve my “comfort level.” But get this: The known and most common side effects would basically be what I’m trying to avoid at this point: difficulty swallowing, sense of taste affected, sores inside and outside of the mouth, inflammation, nausea and fatigue. I wonder if it’s possible that I could feel even more fatigued, but that’s the least of my worries. It sure sounds like I’d feel a hell of a lot worse doing a series of radiation treatments, though.
I do believe there are worse things than death. Like writhing in pain on your death bed and no matter how many pain pills you can swallow or morphine they inject you with (but carefully not enough to kill you), your poor body and mind is still in agony in one way or another until it finally just has to give up.
I’m still grateful I can make my own choice as to how much misery I’m willing to put up with, especially given there’s no hope of a cure anyway.
I’m trying to adjust to this new way of life no matter how long it lasts. But it surely isn’t easy going from an energetic, on-the-road traveler to someone who needs to be in bed most of the time.
Emotionally, I am all over the board. Sometimes optimistic, feeling good and thankful, other times gloomy and just wish the end would come now. It’s always the fear of the unknown that is the spookiest. I didn’t know exactly what to expect when I heard how advanced the cancer was, but it wasn’t this.
People talk about how brave I am and how well I’m handling this. That sounds like a joke to me most times I hear that. But the fact of the matter is I think that if I come across as brave, it’s only because part of me knows that this just is my time to leave this earth. In that sense, I am at peace and that is what prevails most of the time.
I may be sad at what I’m leaving behind, but I also have a glimpse of the glory that waits on the other side. In some things, I have no choice, so in those matters, I try to just keep the faith. That’s still my most fervent prayer: Peace of Mind and Unwavering Faith.