Quite a lot has happened since the last update, both good and bad. . . .
First, the good: As I mentioned in the previous blog post, I started chemotherapy last September 1st, and was put on first the Kyprolis/Dex for four months (an IV infusion over two days a week), and now am on a simpler regimen of Revlimid/Dex (a daily pill, 21 days a month). This heavy hitting drug regimen has had the effect of reducing the myeloma numbers to almost zero!! My numbers have not been this low since before tracking them began back in 2005. So for this I am very grateful and somewhat amazed, as I never quite thought this could happen for me, remissions were what other people got. All I ever did was watch my numbers slowly creep up as the years went by.
Side effects have been there, but really not too terribly bad a price to pay to watch my numbers drop and feel no more discomfort in my bones. My hair did NOT fall out (yay!!!), but I’m pretty tired most of the time, the white blood cell count being very low due to Revlimid. And there’s been some “chemo brain” on bad days, when I don’t know whether I’m coming or going. But that’s about it, really. I get a seven day break from the Rev each month and by the end of that the energy starts to return and I start to feel more like my old self, so I know this is a temporary thing. I’m hoping to go off it all soon, once this final stretch is complete.
Rather than seeing these chemo drugs as the enemy, nasty things full of toxic chemicals, I’ve tried to view them as the agents of my healing, and indeed they have been. They have brought me back from the brink of the abyss last year, and therefore I am very grateful to them. And of course my good doctors who are making a fortune prescribing them. It’s astonishing how expensive they are, and I thank God for good insurance coverage, and the wonderful charity The Leukemia & Lymphoma Society, which pays my drug co-pays (I had a $7,000 co-pay bill for three months of Kyprolis last year!!) (Twenty-one pills of Revlimid cost $10,000 — people go bankrupt trying to pay for that drug.)
The not-so-good: Last winter a tumor had developed on my left shoulder joint (called a plasmacytoma). It had been hurting for some months and I thought I just had bursitis or something, so neglected to have it looked into. I am learning that if there’s any unexplained pain that doesn’t go away and only gets worse – get it checked out properly with x-rays and/or MRI. This caused the shoulder joint to break quite severely when I put pressure on it trying to get up from the floor (me and floors don’t get along). So I spent three weeks in hospital having radiation treatments to take care of that tumor, with my arm in a sling, unable to move it. And after that, three weeks in a rehab center (also known as an alternate universe) hanging out with the Alzheimer’s patients. Still with the arm in a sling and unable to move it.
Do you want to know the absolute worst thing about being in hospitals and rehab centers? Not being able to take a proper shower every day and wash your hair! The little Vietnamese lady at the rehab center, Mai, who gave people showers that felt like being in a car wash, was one of the more interesting things about this whole experience. (The rehab place thought a shower once or twice a week was all people needed — arrgghh!! And in the hospital you can just forget it altogether.) During this time I was heavily medicated on oxycodone every day, the same opioid drug all the news headlines are talking about as causing such an addiction problem. Every four hours they’d give me another one, even during the night. Gradually, as the pain lessened in the arm, I was able to wean myself off this highly addictive drug, but it took about three months. It wasn’t until the last pill ran out on the prescription and I had told the doctors not to renew it, since I actually didn’t need it any more, that I was finally able to stop.
It’s been five months now since the break and the arm is back to about 2/3 of it’s previous ability, thanks to twice weekly physical therapy and just time. The osteopath said it would be a “frustratingly long” recovery time, and he wasn’t wrong. I feel like I’ve been in the strangest limbo. Not being able to take care of yourself is a major thing, and it’s only been a month since I started driving again and living back on my own, doing all the shopping, carrying the grocery bags, cooking, etc. All the while still on chemo. But it’s starting to feel like my old life is returning, just rather slowly. I’ve left the crushing heat of Arizona and am getting resettled back in the Seattle area, also a slow process.
I would like to say a word of thanks to some of the people who helped me the most during this past year: Steve Ross, indefatigable driver and reader of good stories; my sister Terri, wonderful cook and shopper; Irene Haitsma, finder of great apartments and mover of large boxes, and my long time friends Richard & Susan, Amy, Linda, Tové and Sylvia, for exceptional emotional support and good Indian lunches. And of course my incredible mother, whose love and support and spiritual inspiration never wavers. Where would I be without you all.
None of us knows the twists and turns life can take (I was tempted to add “breaks” into that phrase, but will avoid the bad pun). People often comment they think I am very “strong” to be able to put up with all this. You just go with what is being given to you at the moment, trusting in God and His wisdom for your life, and know that nothing lasts forever, everything changes, usually by the minute. If you hit the rapids now and again, I know that there is a peaceful eddy just around the corner.
The odd thing is that I find these episodes of extreme situations easier to cope with than when things get back to more “normal”. I’m not sure why that is, but in situations like that you really have no choice but to let go and surrender to whatever’s happening. It’s day-to-day life that proves more of a challenge, because I think I have to figure it out and make things happen myself. The only thing I really need to figure out is how to carry that feeling of grace and being cared for over into everyday situations, the old “let go and let God” advice.
Okay, time to stop rambling. If you’ve read this far, God bless you and I hope you have a peaceful day enjoying the lovely spring which is upon us this year. Hopefully more good news will be following in the next blog post, whenever that may be. And I’m not getting up off any more floors any time soon.