In just 72 hours, I face a huge landmark. I have orders from the department of nephrology at the University of Washington to have the tunnel catheter (which goes into my Vena Cava) removed. I can remember that scary and confusing night on January 17th when it was put in. We had no clue as to why, but I was in serious renal failure and was dying. It was an emergency attempt to get me on dialysis and save my life.
I was told the catheter would be in for 2-3 weeks, until this got sorted out. Well, it did get “sorted out” when a kidney biopsy came back with the worst possible diagnosis. But the tube stayed in for seven months. There was nothing primary wrong with the kidneys, except they were full of protein, that had to be coming from a bone marrow cancer.
I’m shared here many times how much I’ve hated renal failure and dialysis, as much as I have hated my cancer, sometimes more. I’ve had hundreds of people praying that this day would come, when I would graduate from the machine.
With some hesitation, I shared this renal recovery story with my online support group. About 20% of Multiple Myeloma patients begin like me, in renal failure. I know during my long months, when my own nephrologist was giving up on me, I felt quite hopeless. I wanted to give the members of this support group hope.
I have been overwhelmed with about 70 responders, many who are in the shoes I was in, on dialysis. They are, of course, happy for me. They have questions as to why my kidneys came back, for which I have no clear answers. My kidneys seemed to have returned during the most dangerous point of my treatment, when I was given a lethal dose of melphalan, which can destroy the kidneys forever. As a matter of fact, this is what happened to a patient down the hall. She came in like me, with rotten kidneys and when she got her melphalan, her kidneys were completely destroyed forever.
So, the responders say how lucky I am. I am and I feel that luck deeply. But these kind of situations raise some of the most perplexing questions of life. Do I call it luck? Do I call it an answer to prayer? Do I call it fate? Do I call it the hard work I did of doing research and putting into practice, everything I could do to save my kidneys?
In the grand scheme of things, it has not been a “lucky” year. I lost my mom a year ago this past week. Then, that created a lot of tension within my family, which had not been there before, leaving me feeling like I had lost my entire childhood family. Then, I started to have a list of painful and disconnected problems, left rotator cuff tear, then the right and then, out of the blue, a neck and nerve problem going down my right arm, which was very painful (but until this day, we cannot find any connection to the cancer).
Then, just after a 5 mile hike in January, I go to the lab for routine tests and found out I was in serious, life-threatening renal failure. The only symptoms I had, were neurologic. As the nephrologist in Bellingham was trying to figure this out, she mentioned the Multiple Myleoma was on the list of possibilities, but at the very bottom, around 5%. Too many things to explain here as to why. Then, the night after the biopsy, she came in to give us the dreaded news of how unlucky I was. Out of many fixable diseases, I had the one that was not fixable and very well could take my life. Denise and I had stepped off the curb that night and into a nightmare that never seemed to end.
So, there is good luck within horrible luck and they don’t cancel each other out. Of course I am thankful, so thankful for this break. Of course I am thankful that this hideous process of stem cell transplant is mostly behind me . . . now it will be a two-month wait to find out if it worked. God forbid if it didn’t . . . could I go through this again?
I am still suffering from the rare (10%) pseudo-graft-host disorder, which has delayed my departure by one week. I am on high doses of steroids, which takes some one like me, with high risks from having a brand new, but immature immune system, to virtually no immune system again. I left the hospital on 2 daily medications. Now, I’m back on 12. First it was the addition of the steroids, then the anti viral, antibiotic, antifungals, anti-hypertensives (the steroids have made me very hypertensive).
In roughly 98 hours I will be discharged from this place and get to return to my lovely home in Anacortes, a place I have not lived since May 1st. Part of me wants to wrap myself in bubble wrap and soak myself in alcohol gel, just to keep me out of trouble until then. If another hiccup, then all bets are off.
One concern is that the very high dose of steroids are barely controlling my host vs graft problem. I take my steroids (75MG prednisone) in the morning, by evening the really bad rash is starting to explode again. On Monday, we start the very long and gentle taper. Somewhere along the line, this has to work better or it is back to the drawing board. The good news, is that it works up to 80% of the time in other patients.
My strength is returning and we did another 5 mile urban hike yesterday. I am feeling 100% better than a week ago. I am eating too much. Now, head to toe hives are my major complaint.
I will not be declared healthy again until June, 2020. I will have a follow up visit then where I will get all my childhood immunizations to jump start my new immune system. If the stem cell transplant worked (and during the lethal dose of Melphalan my bad bone marrow cells were killed) they would consider me normal, but not cured as MM can always come back.
I have strict rules I must follow for the next 6 months to a year. No public gatherings. Eating out rarely in very safe places. No touching dirt. The list goes on. But, following these rules will mean I am at least a live. Mike