UPDATE: THE COUNTDOWN BEGINS

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

 

7 thoughts on “UPDATE: THE COUNTDOWN BEGINS

  1. Praising God right this minute for all the healing that is taking place Mike. I totally relate to the dilemma of where in my mind and heart to put a victory for you, when others do not have such success. We know it’s not because God loves you more than anyone else, or because of the sheer number of us praying for you, (although I believe it sure doesn’t hurt to have an army of prayers), or because you have any control over disease simply through knowledge, and I’ve never been a fan of “luck” because it’s way to fickle. So…I will simply choose to thank God for His mercy for you and Denise at this moment, acknowledge that His ways are above mine, and let it be what it is; and that is enough for me today. I will continue to experience His love in all of it’s beauty, and trust Him with the ugliness. Love you, Craig (and Beth)

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    1. Yes, you are right. The theology of prayer and thankful answers is easy. The difficulty is for those, like the 70 who reached out to me, who have prayed their hearts out and, so far, have seen silence or a cold cod fish for an answer. The hardest ones I’ve seek here are the little kids who suffer horrible and are bathed in prayer from their families and communities and yet, their cancer takes a much worse course than predicted. It is a mystery and I think we get in trouble, like JOB, when we assume to know God’s plan or method. But, for today (now with 48 hours until tube pull) I can feel the joy and thankfulness.

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  2. This journey of yours is so hard to take in, seems so unbelievable for a person to have to endure all of this suffering and pain. I am grateful that it seems you are progressing and hopefully going home soon albeit with many restrictions. My heart, thoughts, and prayers continue to encircle you and dear Denise 💜💜

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  3. Mike, all I can say is wow! Amazing ups and downs and certainly more to come and praying on your road to recovery, many more ups!! I choose to believe it is not luck but God’s mighty hand that has been at work in your body, and yes, I believe it’s because He hears the prayers of His people and in His love and wisdom is working His miracles in your body at this time and place. So many people love you Mike and thus many prayers, thoughts and good wishes are headed your way!!! Anacortes will soon be your reality again!!! What a beautiful place you live now, it’s beckoning you back!!!🙏🙏🙏❤️❤️❤️

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  4. Great news Mike. Hard not to but don’t worry about the future but live each Day to the fullest. Enjoy the serenity your lake home gives you.

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  5. Very happy for you Mike! I understand the dilemma of “why” . Why did this happen in the first place? Why are you now apparently temporarily healed? Why do others suffer? and then the dilemma of “what or who”. What or who healed you? the prayers, your diligence? the doctors? etc. I have been there with a life long auto immune disease. I wasn’t sure in all the years of my child growing up if I would be there for her until she was 18. She is now 42. So many questions; so few answers. But like Craig, I choose to just thank God and acknowledge that for now I see through the glass dimly. Thank you for sharing your heart, your soul, your life with us this year. You have no idea how many lives you have touched with your honesty. God bless you. And for now I will choose to continue to pray that you will continue to heal. Much love to you and Denise. Lynn Karns

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