Author: J. Michael Jones

I came into the stem cell transplant program on May 1st. It has been a daunting journey for Denise and me both. At 3 PM today, I am scheduled for discharge and it is now 5:30 AM and no new hiccups, so the discharge is to be expected.

Now that this phase is over, I don’t expect to do so many play by play updates here, only if there is a a major change. But I wanted to take this opportunity to look forward to what this coming home to Anacortes will mean to us.

We are tired, beyond exhaustion. Our first step is trying to get our feet back on our own ground and to create some new patterns of life. I personally will focus on exercise and trying to get off as many of the 12 new medications that I can. I know that Denise deeply desires a new routine in exercise as our downtown walking and (for her) running got old.

I am still dealing with on complication of pseudo-host-vs-graft syndrome. It was purely awful around the July 4th, but now being on mega doses of steroids, all the symptoms have resolved except for a persistent rash. We pray as I taper the steroids, that the symptoms don’t return.

I know that I’ve explained this before, but I will try to again as there will be no misunderstanding. Stem cell transplants offer someone with MM the hopes of putting them into a deep and lasting remission. The American Cancer Society still list MM has having no cure. Often it is a matter of time before it returns, although my doctor here has used the “cure” term when she has seen patients remain in remission for 30 years. To help preventing it from returning, I will have to go back on chemotherapy, at least for 2 years (or life). There are other long-term risks because I’ve had a stem cell transplant, including developing other cancers.

We don’t know how well the stem cell transplant has worked, yet. We will re-stage my cancer in two months. Our hope is that the remission will be deep. There is a chance that all of this effort, expense and suffering bought us nothing and the cancer will be the same. That would be devastating as this process has been so hard on us, that I’m not sure I would go through it again, even to save my life.

We are tired, but feel disjointed from our Anacortes friends. We have had wonderful times with our kids who live in Seattle, but have only seen our Anacortes friends, Jerry and the Holtgeerts since May 1st.

We are open to visitors and desire them as we seek to reconnect, however, visits will have to be limited in time (no dinner parties) until we get on our feet.

I have an extremely limited immune system right now, from both the stem cell transplant and high doses of steroids.  I cannot receive any visitor who is ill (even with a cold) for at least six months. While I can have limited time out in public, I cannot attend meetings (including church) until at least December.

I am hoping to return to my 5 miles per day hikes (but with trees rather than buildings) and would always appreciate a walking buddy. Denise is going to work to find her new normal and I want to take as much of the burden off of her as I can.

I had to park my small sail boat for the summer, but if anyone ever needs a deck hand, I might have the strength to manage a line or two. I miss sailing.

Thank you so much for making this arduous journey with us. If things go really well, they will consider me “back to normal” by next June.

Mike and Denise

 

 

‘

The photo on the left was taken at 2 PM today. The one on the right at 3:30 PM. The indwelling tunnel catheter is gone forever. No more dialysis. No words can explain what this means.

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

 

It appears that I have pseudo-Host Vs Graft Syndrome. For patients like me, who received their own stem cells, this problem, while with severe symptoms, is usually easily treated. The team reached this conclusion by all the other test being negative and how profoundly I’ve responded to three days of high dose steroids.

So, I went from feeling horrible on Monday morning to feeling halfway decent this morning. I felt so well that yesterday we did a 5-mile urban hike (Pete Gross House to Lake Union to Pikes Place Market and back).

This morning I felt so well that I was able to walk down to meet Ramsey and Denise for coffee at the Cascade Coffee Works. This was the first time I’ve had a cappuccino since I was admitted to the hospital (before the transplant) on June 9th. There are two reasons I’ve avoided espresso. The first, was that the transplant process made everything taste like a burnt cat turd soaked in bleach. Since espresso taste a little burnt to start with, it was unpalatable. The second reason was that I’ve had (one of my main symptoms) Godzilla-diarrhea (my term for this awful symptom). Espresso has the tendency to move the bowels and I didn’t want to take any chances with that. Since going on the steroids, my taste buds have finished returning to normal and the diarrhea had stopped so it felt safe.

It was truly a milestone this morning to have coffee with Denise and Ramsey (although Denise doesn’t drink coffee).

We met with the team today and we have a new (tentative) plan. We will finish the course of high-dose steroids on Sunday and then start the taper. The concern is that the symptoms will start to return. The studies show that 79% of the time, the symptoms do not return. So, our new discharge date is a week from today, July 17th. Please pray that the symptoms do not return and it would launch us down a new pathway of trying to figure this out, possibly going back into the hospital.

Tomorrow is my birthday. My wonder kids has gotten me a ride on a float plane, flying  out of Lake Union, around Seattle and back to the lake. It has been on my bucket list. Now, just being alive (but 10 lbs lighter and hairless) is enough of a gift.  Mike

 

I’m not too surprised, but it looks like my discharge will be delayed by one week. While we have gone stir-crazy living in downtown Seattle, I certainly don’t want to go home feeling as bad as I do. Hopefully they can get to the bottom of this ASAP.  Mike

The cancer family of diseases are nasty, very nasty. The word “family” doesn’t seem appropriate here. While I’m grateful for all the new treatments for cancer, which we didn’t have just a few years ago, we must find a more humane way of treating this terrible disease. We need treatments and cures that are beyond radical surgery, radiation, chemotherapy and, like what I had, stem cell transplants.

There are two types of stem cell transplants, autologous and allogeneic. I had the autologous type, where my own stem cells were used. This process greatly reduces complications and duration of treatment.

While I spent about 25 days in the hospital, I met allogenic stem cell transplant patients who had been hospitalized and re-hospitalized for several months. They look to me with some jealously that I may be discharged on this coming Friday. With that said, the process has been brutal for me (and my experience is average).

I left the hospital 8 days ago on a positive note. My symptoms (fatigue, altered taste, cramping, diarrhea and vomiting) were improving. Then, around July 4th, my symptoms started to get much worse. I’m now on day 27 of diarrhea and severe abdominal cramps as well as nausea and vomiting (sounds like  Pepto Bismol commercial).

My team is trying to get to the bottom of this. On Friday, I had an IV infusion to help correct my electrolytes. On Saturday, we started the process of trying to find out if I have some opportunistic infection of my GI tract. I should know the results in the morning. If this is not caused by an infection, the next likely possibility is a disorder called “pseudo host Vs Graft Syndrome.” In this case, it is where my digestive tract is attempting to reject my stem cells, although they are my own. This latter problem is usually easy to treat (high dose steroids) but we must rule out the infective cause first.

After having, what feels like, the stomach flu from hell for 27 straight days, I feel exhausted from it. The abdominal pain is almost unbearable at times. I pray that these symptoms will end, that my team can get to the bottom of this, and there will be better and better treatments for cancer that are not so toxic. I also pray that this hiccup will not derail my discharge to come home. Of course I dream about going home, however, I don’t want to go back to Anacortes in my present state of discomfort.

I wanted to take a minute to say that I am deeply grateful for all the support that I (and Denise) have received over the past few months. I have read every comment here, every e-mail, every post card that came via US post. I am so far behind in the showing of gratitude, that I know when I finally do feel well enough to write, that I will never catch up. So, please take this as a heart-felt thank you. I know Denise feels the same. This is a tough road to walk and I know that neither of us could have made it this far without this overwhelming support of our friends and family.

I will throw in a bit of news from today. My progress, speaking of symptoms, still seems too slow for me. I was able to walk about three miles today, in between episodes of cramping and diarrhea. I met with my team at the cancer center too. If things continue uneventful, I will be discharged back to Anacortes on July 12th. If a minor hiccup (such if the diarrhea has not slowed down by then) I may need to stay until the following week. If I were to get an infection, all bets are off. Please pray that I can avoid infections (the majority of stem cell transplant patients require a re-hospitalization due to infection). If things continue without a hiccup, this tunneling catheter in my chest will also be removed on my birthday, July 11th. That would be the greatest birthday present I’ve ever received.

The tunnel catheter was place in my chest as an emergency on January 17th at Peace Health Hospital in Bellingham. At that time, we did not know why my kidneys had failed, but I was in desperate need for dialysis to save my life. The thought at the time was that I would have the catheters for about 4 weeks. It turned into six months, six long months.

On that day in Jan (the 17th) the two main toxins (creatinine and BUN) were 12.5 and 156 respectfully. A normal creatinine should be below 1.2  and a BUN below 21. While I was doing dialysis, the best that we could get the toxins down to was a creatinine around 3.5-4.5 and a BUN of around 50-60.

Ten weeks ago we stopped dialysis. As of today, my creatinine is 2.4 and my BUN has been bouncing around 21-23 (yes, normal at times). This has been an unspeakable blessing, meaning that I’m done with dialysis for good. This not only gives me a much better chance for a quality of life, the ability to travel outside our immediate area, and a much better prognosis for surviving my cancer. Thanks so much for your prayers.

Mike

My poor tablet sits, alone on the window sill. Each day it seems to be saying, “remember me?” I honestly can’t remember ignoring my tablet and it’s portal to the online world the way I have in the past two weeks. It has literally collected dust.

I picked it up today with the sole intent of coming to this blog and shutting it down for good. I simply feel too crummy to type or to surf the web. I didn’t realize, before now, that when your stomach is nauseous that it is hard to follow the cursor on a screen.

I do remember a day, about four weeks ago, when I was meeting with a social worker as part of the prep for a stem cell transplant. I told her how good I was feeling on that day. I had not had dialysis for four weeks at that point, and dialysis always made me feel bad. I had also not had chemo for eight weeks, which made me feel at least as bad as dialysis. I told her that I was feeling 80% normal. She gave me a smile and said something strange, at least I thought it was strange at the time.

“Michael, remember how you are feeling today and know that someday, hopefully, you will feel this well again.”

This was just days before the stem cell transplant. This social worker is part of the stem cell transplant team and knew where I was heading.

Medical care has two main purposes. One is to ease suffering. The other is to save lives. It is hard to imagine that we just went through a very complex process that will end up costing hundreds of thousands of dollars and that process has taken me from feeling 80% normal, to feeling horrible. But the purpose of this process is to save my life, not to reduce my suffering . . . at least not yet.

I do have hope that there will be comfort coming. That hope is seen only as mirage at this point, but has factual basis. For one, there is a very good chance that I may never need dialysis again and that alone may usher in a much better feeling, in a few months.

The Seattle Cancer Care Alliance has the most experience with stem cell transplantation in the country. They have well-written road maps as to what to expect at each juncture. For now, and for the next few weeks, diarrhea, cramping, nausea, vomiting, altered sense of taste, and several other symptoms dominate. These should slowly subside.

I am now entering a new phase where things like “cognitive changes” start to appear. I don’t what will mean for me or even why it has to happen. I don’t know how much of the old Mike is still left. I look at myself in the mirror and I don’t recognize myself. The bald head is just the most obvious.  But the muscle wasting, purplish hew to my skin, dark eyes, all seem to tell me that it isn’t me in the mirror. If I start to loose my cognitive abilities (and hopefully it will only be temporary), what’s left of me? Will I be able to rub two words together to create a sentence? Will my brain get to frolic in the fields of “high thoughts and pondering” ever again?

So, I came here to shut down this blog before I start to really ramble or where my cognitive lapses allow more room for typos to grow. But instead, I find myself sharing more thoughts. It appears that for now, I will leave this place intact, in case there is enough of the old Mike left in the end to make sense about something.

 

My stem cell transplant (SCT) was June 13th so now I am officially SCT + 17. I was discharged from the University of Washington almost 48 hours ago. I had a out-patient follow up visit yesterday. I am happy to say, as I was reminded during my visit yesterday, my course has been “uneventful.” In other words, there has been no complications, so far.

Yet, with that said, I will say without hesitation, these past few weeks have been the most miserable of my life, and I thought I was familiar with suffering. Maybe I am a wimp. But I just can’t imagine the torture those patients who did have complications have endured. I’ve met several of them. I knew that SCT was going to be hard, yet I may have under-estimated the symptoms.

Presently, we are back in the Pete Gross House, which is near the Seattle Cancer Care Alliance. We are doing infusion for hydration each day in the apartment, as Denise takes on a nursing role.

The major symptoms of the SCT have been very painful cramping and diarrhea. In the beginning it was as many as twenty times a day. Now it is down to five or six, so there’s improvement. The second symptom was nausea and vomiting, that downgraded to just nausea, then to anorexia and taste distortion.

I have not been online during this time of being quite ill. I’ve ignored all my e-mails because I’ve felt so badly.

The plan will be to continue going to SCCA for daily checks and trying to stay out of trouble with secondary infections.

I have now missed two full months of dialysis. We were concerned that the harsh chemotherapy re-injuring my kidneys. To my big surprise, my kidney labs have continued to improve, to near normal. It is almost a given that the tunnel catheters in my chest, which were placed for dialysis on Jan 17, 2019, will be removed as soon as we are doing with our infusions (which are now using the same lines) in about 2 weeks. That is certainly a godsend.

Please pray that we can continue on an uneventful course and that when we check the status of the cancer, in about 2 months, that it will be non-detectable, meaning this course of misery was well worth it.

I can now, fully appreciate those Multiple Myeloma patients who have chosen to die rather enter than this arduous process. I am coming out of ten days of the most suffering I’ve ever endured. It is like they have to take you to the edge of death, in order to save you.

There members of my team who say that I’m doing better than their typical patient. Others have said that I’m doing average. No one has said that this amount of suffering was atypical.

Yesterday, my new stem cells started to work! A few white blood cells have popped up on the morning lab tests. This morning, there was doubling of that number. I have also started a slow improvement in my symptoms. I have now gone, today, 5 hours without diarrhea.

I have had a few minor setbacks, such as a fever and rash. We have to watch those things closely.

My kidneys have fared well, despite the great insult against them through my chemo, antibiotics (because of the fever) and the poor state of health I’ve in for the previous two weeks. My kidney blood tests have shown no worsening of the organs, but a slight improvement.

Today, Denise buzzed off the few clumps of hair that I had left, so I no longer look like Gollom.

It will take several months to figure out if the harsh chemo killed off the cancerous bone marrow. We pray for a deep and persistent remission.