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. Read her previous post here.
by Malia Lane, Malia’s Miles Blog
It seems to be time to accept that time has not stood still since I was first diagnosed in May with terminal lung cancer. My goal now is trying to reach peace and acceptance that the time is coming much faster than I originally anticipated. When I was first diagnosed and given an average life expectancy of a year, I found it hard to believe since I was still feeling relatively well with no major symptoms.
When I saw the oncologist right after I got back from Texas in November, he said he wouldn’t be surprised to see me sitting there in 3 months, but probably not much longer. Of course, he emphasized it’s impossible to predict with any accuracy, but based on his observations and how things have changed since I last saw him, that’s his best guess.
In large part, it depends on what the cancer does as far as expanding. When I saw my hospice nurse last week, she said the tumors had grown over 30% from the previous week, a rather alarming growth rate. That’s when I began to understand that even two months might be optimistic right now. The concern is that the growing tumors will start pressing on things that will affect my breathing or ability to swallow. Besides whatever has broken through the skin, they’re apparently going a bit crazy on the inside, too.
Don’t worry – I’m not going to include gross cancer pictures to prove how disgusting things really have gotten. But this little pimpley looking thing is how it looked when I got back from Texas in late November. Now it’s spread in all ways – outwards, up, down and across my neck. Imagine the elephant man with fever blisters or something equally disturbing. It’s really hard seeing this on my body, let me tell you, so whenever they change the dressing (every two days), I don’t let myself dwell on it or I really get upset. As long as it’s bandaged, I can deal with it, even though the pain is definitely increasing. But hospice continues to be the most wonderful blessing and I don’t know how I’d be getting through this without them.
I’m still trying to stop second-guessing myself and wishing I had never done that big biopsy that turned out to be useless. I’ve been assured that the cancer can break through the skin no matter what, but it’s also true the breaking of the skin provides a path of least resistance and I just can’t see the coincidence that it started right at that scar.
They’re hoping the steroids I’ve been on the last few days will slow it down if not shrink it, but so far I see no signs of that. It is getting more difficult to bandage because of all the lumps and bumps and movement necessary in that area.
This all has made me feel like it is finally time to really start putting the wheels in motion, so I now have all the prescription ingredients and instructions for the mixture and when it’s time, wonderful people I’ve gotten to know at End of Life Choices will come here, make sure it’s mixed correctly and help me in any way they can. My daughter and her loved one to support her will be here and I’m at peace with these arrangements.
The doctor says I’ll start noticing signs and be able to make a better judgment about timing as things progress. Since I have to be fully conscious and able to swallow the Death with Dignity drug concoction, the continued growth is a real concern. But they said I should have some advance notice; that it would start feeling a little harder to breathe and have more difficulty in swallowing. This should give me the time to get on with the real preparations for taking the drug.
FROM WHAT I UNDERSTAND, once swallowed, I will be unconscious in a coma within 10 minutes or so. They can mix the concoction for me, but I have to be conscious and mentally competent enough to drink it all down myself. They assure me I will then totally be out of it and in no pain or distress. As for how long it will take for all bodily functions to cease, that could be anywhere from 2-4 hours (possibly longer) before I am released from this lifetime and on to my next journey. They said a lot depends on how strong your body is at that point and since my appetite has still been good, I worry a little that will not work in my favor as far as time goes, but I’m trying not to get bogged down thinking of those kinds of details now.
It’s a bit of a delicate balancing act to figure when’s too soon but not to wait until it’s too late and I can’t swallow the meds. If it invades nearby major arteries, it could cause internal or external bleeding. I certainly don’t want to die in that manner in the middle of the night while alone, that’s for sure. If that starts looking like more of an imminent possibility, I may just have to consider going sooner rather than later while I have the choices to do it my way.
People continue to write and worry about me being alone. I don’t know how else to explain that I honestly don’t feel alone. It seems I am always aware of being connected to things around me and I know that God, my angels, and guides are always with me. My friends and their messages are a constant source of encouragement and support. I’ve always been a bit weird that way, but when I am alone I don’t usually feel the sadness of being lonely. For whatever reason, that’s just the way I am.
My friend Karen is always available for a talk or getting together, too. So I always have that choice and opportunity. It was a bit surreal when I was sitting in the drugstore waiting to pick up the prescription that’s going to end my life as I know it relatively soon. It’s a pretty daunting thought, but I am always aware of the prayers that are flying all around me and the encouraging thoughts in cards and messages are unbelievably appreciated. So don’t worry, my friends – whatever I feel, I don’t feel alone.
As I maintain, I have no fear of death as far as what happens once I cross, but have held on to some fears about this process. I guess my final prayer will be that it all goes without a glitch and as anxiety-free as possible. Life is full of hard choices no matter what phase you’re in.
Days still consist of taking care of the endless details to be handled when you know your end is near. At least I’ve got all the major points covered at this point, but at least a few times a day, I think of something I could do now to make it easier on my family once I’m gone. I’m making lists, compiling documents with notes and tips that might come in handy when they can’t just pick up the phone to text with a question. I know me – on the other side I will still want to help or put my two cents’ worth in.
I think of scenes on TV or in movies where you can see the spirit of the person on the other side trying desperately to communicate with their loved one. Reaching out to touch in order to comfort, but hands go right through the other. I know there’s not much I can do to lessen their grief, but I know I will certainly try.
Greatest News: My book Fear Vs Fearless: A Journey of a Lifetime is now available in both paperback and Kindle editions (free with Kindle Unlimited). There’s no way I can ever express how grateful I am to Larry and Jaimie for their help moving the book forward.
I could never have finished so fast without the attention they paid to detail. Even after the arduous task of just completing the book, I had no clue about things like book cover design, synopsis, bio, as well as all the details with formatting both the e-book and print version. I had an initial editor to work out some basic layout info, but her abilities did not include that kind of technical stuff, so I had reached a roadblock.
I hate asking for help, but that last simple statement on Facebook led to those two earth angels stepping up with the skills and willingness to help in any way they could. Between the two of them, they got it all done. All while insisting they were totally honored and considered it a blessing to them and a privilege that they could help me. Once again, I’m blown away by the wealth of help that is always available to us if we are just willing to keep our eyes and heart open.
I’m thinking the proceeds from the book will finance keeping the websites up for at least a couple of years, so that’s the current plan.
So that’s enough for now.
Love, love, love… Love is all you need