Jan / 30 /19

UPDATE:

If you are skimmer, I will put bullet points at time and details at the bottom, if you want more.

  • I’m still vertical. I’m still having to do dialysis three times a week as we are still hoping for my own kidneys to come back.  Keep praying for my kidneys to heal! Treating cancer is very hard. Treating cancer + renal failure will be much more difficult.
  • Completed one more round of chemo and did well (virtually no side effects).
  • Saw my oncologist and have a plan. About three rounds of chemo to suppress the cancer for now. Then to Seattle for a self-donated, stem-cell transplant. It is a month-long process that can be very dangerous at one point. But my doctor thinks I can handle it. Multiple Myleoma is not curable at this point in history. It is always fatal in the end. But these treatments, including stem-cell, can buy time, sometimes many years of healthy living, while we wait for a new cure. No one knows, but he thinks I could get ten good years from a stem-cell transplant. But again, no one is guaranteed tomorrow.
  • Denise is sleeping very well 8-9 hours per night, (her usual coping mechanism) and is starting to return to work part-time.
  • I’m not in pain. I am fatigued. I still have neurological symptoms, caused by the weeks I was in renal failure and didn’t know it. One of my biggest problems is lack of sleep. I’m averaging 2-3 hours per night at best.
  • No, I do not have kidney cancer. I know it is confusing. I have multiple melanoma, an incurable cancer of the bone marrow, which makes so much bad protein that it kills the kidneys, when their filters get clogged.

Details:

This has been an insanely busy week, especially for someone with 1/2 their normal energy and a wife who is trying to burn the candle on two ends. Having to go so far makes it worse.

Monday I had my last of 5 plasmapheresis in Bellingham (1 hour away). Again, this is a process that is a bit like donating plasma, but far more complex and longer. They literally must remove every drop of my blood, separate it from the plasma part (the cancer is of the bone marrow and makes way too much plasma proteins, which gum up the kidneys and kills them) and put it back into. But they also must replace the volume of the plasma with some that looks like plasma (it is a man-made concoction with some  human albumin mixed in). That went well for most part. However, it normally takes 3-4 hours but the machine kept sending out alarms, which forced it into a 5-hour process. I am so glad to have those behind me. The point of all that was to rapidly remove the bad plasma from my body, so my kidneys will have the chance to recover.

My doctor says I go through these with flying colors, while many people get sick.  I’m thankful for that.

Tuesday (yesterday), we drive the other direction, 25 beautiful-drive minutes for dialysis. That takes 4 + hours, not including driving. Denise is taking me for now but I’m trying to do this myself to give her some breaks from all of this.

Before going to dialysis, I did have my first meeting with my oncologist. We will continue the present chemo program for at least three rounds and then if the cancer is suppressed, I will go to Seattle and start the process of stimulating my own stem cells and then harvesting them. Then we shut down my bone marrow, erasing it completely (we hope) with power chemotherapy. Then we re-introduce my stem cells to re-populate my bone marrow. This treatment can often buy many healthy years. But it is very dangerous to do. That’s the trade-off. I do hope to return to my career as a headache specialists. Getting off dialysis would be a great godsend of moving forward. After dialysis we had to race back to Anacortes for an appointment to get chemo.

Denise is doing much better, but of course all this is hard on her. I am trying not to lean too hard on her. She is sleeping fantastically, which is her usual coping mechanism. It appears to me she is getting at least 8 hours per night. She is starting to go back to work part-time. She has a very demanding job.

One of my biggest problems is lack of sleep. That has always been my Achilles heel. My problem of sleep goes back to a left, full rotator cuff tear 15 months ago (when a tree fell on me). So, it has been painful to sleep on the left. Then I had a right shoulder injury when I fell on ice on the top of a mountain. So, then I couldn’t sleep on my right. Then, for reasons only God knows, my neck went out in November. We were very worried that it was the cancer (which would be terrible to have spinal fractures and possible unstable spinal cord), but with several tests, there is no evidence of it being from the cancer. But my neck pain makes it hard to sleep on my back. Now, I have to big catheters going into my chest for dialysis and plasmparesis. I don’t even want to know how they are plumbed up inside of me. As a PA I can only guess. But, you have this fear that if you lay on them wrong or catch them on something, they will be pulled out and bring your vena cava with it. So, the icing on the cake is the mental part of knowing that you have gone from being a healthy person to one on the edge of death and now with a long hard fight to prevent immediate death. Those things all work against healthy sleep.

The biggest prayer request is for kidneys to return. Kidneys do a lot of things. In filtering blood they do three major things, remove fluid, balance electrolytes and remove biological toxins (mostly dominate creatinine). My kidneys deserve an applause for removing, on their own, 12 lbs of extra fluid between last Thursday and yesterday. They have also gotten my electrolytes in balance on their own. However, they have not clearing creatinine on their own fast enough and for that reason, I will be on dialysis definitively.  That will profoundly change my life for the worst. I did finish the first rough draft of my next novel, Christian Athena; the Girl with the Headaches during dialysis yesterday. This book is a fictional account of what it is like for someone to live with daily or near-daily migraines for all of your life. I draw from the 10,000 woman I have taken care over the years (not to mention the 4,000 men). I will need to do two edits to bring it up to speed with a projected release date in early summer, or perhaps late-spring.

Cancer fighters and survivors could have warned me, and probably did, but this is an emotional roller coaster from hell. You get great news followed by bad news, followed by good news, followed by horrible news, followed by more good news. Finally you reach a breaking point, or at least I have. Maybe others are stronger than me. I had a melt-down this week. I was thinking this was the beginning of the end of my mental health. I think it was more like a steam engine letting off steam, then back to work.

I’ve heard the cliche many times about living in the moment. I don’t like cliches. But you have to in this situation. You can’t think about tomorrow because so much is there, which today’s emotions can’t handle. You have to learn the to feel deeply the breeze across your face, the sun in your eyes, a kiss on your lips, a rock at your food, a scene before your view, and the taste across your tongue. To grow to appreciate a good poop, a long piss and each minute of sleep your tired eyes can rustle up.

Today was the one day of the week when we didn’t have a grueling schedule. Denise went back to work and my plan was to try and stay in bed (had steroids with my chemo yesterday so I sat up to 4 AM and got up with Denise at 6 AM). However, and it was another long story, I ended up in the ER for the morning for 4-5 hours. False alarm and I’m okay.

I have a Ramblings, but will have to wait as this day was eaten up by the ER visit. This update post was ramblings enough.  Mike (didn’t have time for typo check, I have to try to take a nap).

 

 

12 thoughts on “Jan / 30 /19

  1. I thought I saw Denise’s car there on my way to volunteering. I am not going to suggest anything but to Margaret she wouldn’t be here without SCCA. That being said five years ago we had a new normal and to be thankful for each new day. Live and laugh or cry and die. We choose laughter. Sometimes it is harder for the caregiver since it is their disease as well. To look forward to a quality of life for a few years is a gift. Enjoy everyday that you can have quality of life. That is your new normal. Having gone through this for now 5 years with life expentacy less than a year we know where you are coming from. We would love to get together and be one of your support group

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  2. Yes…what a roller coaster ride.Be sssured I am praying for those kidneys. I am amazed you have the energy and focus to continue writing so prolifically. But I am not surprised your zest for life continues. As to sleep: Are you able to sleep seated or semi-reclined in a recliner chair? I did this fairly successfully for a couple years before they solved a medical problem a few years ago. I could not lie down well. Private message me if you want more details. DK

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  3. Those kidneys are being prayed for – as is the rest of you. Denise is also in my prayers. I’m thankful she’s been able to return to work. It is good to try to escape now and then.
    I really look forward to reading your new book! I had almost daily migraines until I went through menopause at age 59. It’s not a fun way to live!

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  4. You don’t know me but I feel Im getting to know you through your daily writings. Ive lived in Anacortes since 1966, although my husbands family has been here about 100 yrs or so 🙂
    Having lost my 50 yr old son to kidney disease by way of diabetes in 2016, I’m very familiar with dialysis. I’d like to offer my assistance as a driver to your dialysis sessions any time you need some one. I see your wife is returning to work, so you might just need a lift now & then.
    Been there- done that…Please consider my offer. I’d like to help if I can.

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  5. I also was wondering about a recliner for sleeping, or one of those adjustable beds. Wish I could not be so far away so I could help. Caring is all I can do right now, but that I di. Love you Baby Brother.

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