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UPDATE:6/21/19- Day 51 of a 100 Day Plan

In review, I had Melphalan (strong chemotherapy) on June 9-10. Then my stem cells were re infused on the 12th and 13th. Typically, this means that this week and next are the hardest.

Everything is going according to the plan. That doesn’t make me feel any better as I feel bad, very bad. I’ve had profuse diarrhea for 8 days as well as well as background nausea and vomiting. Except for my abdominal cramps, and blisters on my feet from walking, I don’t have a lot of pain.

Speaking of blisters, they are the results of trying to walk 3 miles per day, here on the floor. I started out strong, 5 miles per day for the first two weeks, yesterday I walked only 2/10s of a mile. But I did complete a Marathon the first week and am now at 29 miles. But the walking is becoming more and more difficult.

Yesterday was my worst day so far. I’m feeling a little better today, but it would be premature to call this a trend or turnaround point.

Last night was an eventful time. First, I had a temperature of 100.1 F. Fever, in someone like me, with virtually no bone marrow, is taken very seriously. I was awake for the first half of the night as nurses were in and out of my room setting up the infection work up, blood, urine, and stool cultures. Those are all pending as I type. I was treated, preemptively with the IV antibiotics, cefepime.

About the time I was drifting back off to sleep, in between episodes of diarrhea, the nurse re-entered the room to report that my platelets had bottomed out and now I would have my third infusion of blood products (platelets). Soon after this infusion started, I went into rigors (severe chills). So, this response to the platelets launched the next phase of work up, taking me up to daylight.

Lastly, today my hair started to fall out in big chunks. It was inescapable.

Denise has been here, at my side, for the whole thing.

   

UPDATE: 6/15/19

I am day + 3 of the stem cell transplant. Things have gone relatively well, although I am now descending, as expected, into the most difficult time, where my old bone marrow is burning out and the new hasn’t started. This time of the deepest misery should last 10 days.

My kidneys did take a big hit during the transplant (as determined by the renal function blood tests). I was fearful that I would have to go back on dialysis. However, since then, in the last two days, they are bouncing back. Today marks one month since I’ve had dialysis.

Our biggest hurdles including me having the typical (bad) nausea and diarrhea with a lost of appetite.  I am not sleeping well due to my neurological twitching being worse during this.

Denise is by my side most of the time, but sleeping on the Peter Gross House. I should say “Trying to sleep” as she is facing insomnia as well.

The worst days should be the middle of next week. That is where most patients get very sick and their hair comes out.

I’ve now walked 200 laps around the hospital halls, which converts to 20 miles. I am shooting for a marathon before I’m too sick to walk.

UPDATE:6/12/19

First two bags of stem cells infused. Tomorrow, we will infuse two more. Things have gone well except I (typically) developed side effects from the melphanin, chemo. So, I’m feeling a little rough with the typicals of nausea, diarrhea and general feeling like chemo-shit. This may get a lot worse of the next week before it gets better.

The kidneys are holding their own, so far, despite the harsh chemo, which is hard on them.

Nice to have Ramsey visit today. Denise was the photo taker.

stem cell

UPDATE:6/10/19

Finished my two rounds of harsh chemo at the University of Washington Medical Center. Doing okay (the real side effects from it does not typically kick in for about 5 days). Had to have a blood transfusion during the middle of the night because my blood counts got so low. First time I’ve ever had blood. Donated a lot but never have received. I will probably have several more before this is over. I am now sleep deprived.

Tomorrow is a day of rest. Then on Wednesday and Thursday, I till have infusions of my stem cells.

Kidneys are still doing okay. We will see where they are at when this is all over.

Walked 5 miles in the hallways of the hospital yesterday (that’s 60 laps). I am shooting for 3 miles today and the rest of the week.

Denise is sleeping in my bed right now (it is 2:50 PM), which is a good thing because she is not sleeping well when she goes “home” to our downtown Seattle apartment. She has too much on her mind between what is happening to me, what is happening at our house in Anacortes, and what is happening at her work.

Mike

RAMBLINGS: Maybe I don’t Have Cancer . . . or do I?

I sat in the waiting room of the lab, surrounded by at least 15 other people, each of us waiting our turns, sitting in soft, brown chairs. They call the last names, one at a time. Being a cancer center, means that we were all there for the same reason, to check on some aspect of our cancer. I was here each morning or every other morning at best, so the room is quite familiar to me. I don’t like the possessive, “our cancer.” As I sat in silence an odd question came to my mind, as if planted by someone other than myself. “Maybe you don’t have cancer?”

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The question came in as a serious question and I took it that way. After all, cancer isn’t something I get. It is something you hear about, when you pray for someone’s aunt, with it …  who lives in Tampa. It isn’t like cold sores, where most of the people you know gets it sooner or later and without surprise.

Me having cancer? It can’t be! I understand now why the place I grew up in, central Appalachia, the word was never used… except in the halls of hospitals. It was used once to describe my Dad’s condition, but he was in his seventies and he was the Marlboro man. Actually, Winston was his stick of choice, a pack and a half per day. Yet, even with Dad, cancer was intrusive and deeply sad …  yet, it made some sense.

After all, I do feel well, except for the background twitching. After all, Denise and I did do an urban hike through Seattle yesterday of eight and half miles, most of it hilly, and woke up feeling fine.

It must be a mistake. I don’t get cancer. I’ve always taken good care of myself. I exercised regularly; I was almost a vegetarian. Cancer wasn’t on my radar. It wasn’t my expected fate.

This question is coming late. It is the type of question that flows through your mind when you are first diagnosed, and it did. However, now, it is six months into this process. The timing of the doubt couldn’t be worse as I am in the middle of a $500,000 treatment plan, the core of which starts in 48 hours. The treatment will be very hard, taking me from feeling great to horrible… and now I ask if I really have cancer? It is like jumping off a 150-foot cliff with a repelling rope attached through your harness and the question comes to your mind, just as the leave the edge, “Did I tie off the rope on a good anchor?”

It can’t be. I feel so well right now. Previously, I felt like I had cancer and it made sense. It doesn’t make sense now. Someone with raging cancer can’t hike eight miles, that is eight and a half miles… or can they?

Could they all be wrong? I’ve had at least 15 doctors concur with the diagnosis, not to mention the PAs I’ve seen. Maybe–I say to myself–the first doctor misdiagnosed me, and the others all just followed her lead?

But then, I ask myself, why am here, here in this lab with the soft brown chairs, where we listen for our last names to be called? I’m here to get labs to monitor my renal function and blood counts. But why? Because they have been abnormal.

Then I find myself back in the mind of the nephrologist who first followed me in the hospital in January. “Why are your renal labs so bad… and they are awful?” she said. She started a convoluted, but structured process of discovery, trying to find out why my kidneys had suddenly failed. She did her due diligence, including a kidney biopsy. It was full of protein, the kind of protein that only cancer can produce.

She got a full analysis of my blood and that same, bad protein was 2500 times normal. There was no other explanation, except that I have cancer. Then, the smoking gun, the bone marrow biopsy proved it. I’ve had two more since then and they agree.

But me? I don’t get cancer. I get the flu sometimes. I’ve known people with cancer, but it isn’t something that I do. Its just not me.

My mind circles back. I reflect on the follow up tests, done at different places, done by different doctors and they all say the same thing… I have cancer. But it couldn’t be. I just feel fine and I don’t do cancer. It wasn’t something my mother told me about. She told me that I would get old, that I would lose my hair, that I would be a grandpa … but she never told me that I would get cancer. I’m not even talking about fairness, as if that mattered. But just that it doesn’t fit. Therefore, it just can’t be… or can it?

Girding up the Loins

This is a saying that is used in Christian circles. Its roots are in several Bible verses, mostly in the King James version of the Bible, where someone is told to “gird up their loins.” The most famous of these verses are in the book of Job, where Job is told several times by God to gird up his loins. In that case, God was telling Job to “man-up” or get ready for a harsh response.

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In history, girding one’s loins is another way of saying prepare for war. It meant gathering up the tails of your cloak (so that you can move without tripping on it) and put your hand on your sword as you go into battle. Later in history the term might have been, put on your armor. Then a more recent version would be, prepare for war or battle. This week is my week for girding up my loins.

I’m on day 34 of a 90-day process. Up until this point, I’ve had a couple of bone marrow biopsies, infusions, bone marrow stimulation and harvesting of stem cells, multiple clinic visits (at least 9-10 per week) and countless blood draws, x rays, etc. All of this has been a piece of cake. On June 9th, the real war against cancer starts and it may be brutal.

On June 9th I will enter the University of Washing Hospital. I will be prepared with IV hydration and anti-emetics (medications that prevent nausea) and then receive the first of two high-dose (estimated 165 MG) of Melphalan. The second dose the next day. It is being spread out over two days due to my renal insufficiency (kidney problems). I will have one day of rest and then my own stem cells, which we harvested two weeks ago, will be thawed out and re-infused over the following two days (June 12 and 13).

Melphalan is a mustard agent that has its roots in the “Mustard Gas” chemical weapons of World War I, which killed over 10,00 people (the first weapons of mass destruction). It was observed after the war that some of the survivors of the chemical attacks had depressed bone marrows, meaning they were not making as many white blood cells as they should have. This gave some researchers the idea of trying variations of these chemicals to kill certain types of bone marrow cancers. This is how we ended up with Melphalan. It is a brutal drug, which is intended to erase my bone marrow. I wish we could erase just the .01% that is making cancer cells, but there is no way to do that. So, we must erase the entire bone marrow. It is a “scorched earth,” approach, but that is the best we have.

The drug makes most patients very ill. Those with renal problems, more ill. For that reason, I must stay in the hospital for two weeks whereas others only a couple of days. Then, because the bone marrow is gone and the baby stem cells are working to create new bone marrow, I will have virtually no immune system. This is the serious part of the side effects and means that I must avoid anything that can expose me to germs (bacteria, fungi, or virus) for at least six months, or it could kill me. So, I (and Denise) gird our loins with a six-month battle in front of us, the worst part next week.

I am taking this course of stem-cell transplantation, not because I am brave, but because it is the only pathway to a potentially, near-normal life. If it is successful, the bad protein production will be halted for now. The cancer will probably return, but it could be in years. This may allow my kidneys to return to normal (over a period of years). This will prolong my life and possibly give a chance for my symptoms of renal failure to improve. I will still have to be on chemo to prevent a return of the cancer.

Right now, I feel the best I have felt since October 2018. My strength is about 90% normal, and the only thing that keeps it from being totally normal my hemoglobin of 9. Normal is 14 for a man. Yet, if were in Anacortes, I think I could climb Mount Erie, but slowly. I am now walking five miles per day as part of my “girding of my loins.”

The reason that I am feeling so much better isn’t due to any treatment, but the lack-there-of. I have been off chemo for 7 weeks and off dialysis for almost 3. Both of those were saving my life but making me feel like shit, all the time. It is hard to describe but it is like I was having the worst flu of my life, 24-7. People would say to me, “Mike, you look great” but little did they know that I could hardly function.

But now, I feel like a real human being. But this is not sustainable. My cancer cells, I am sure (we have not measured them in 3 weeks), are raging with the intent of killing me. With my type of myeloma (stage 3 lite chain), the victims don’t live more than 8 months without aggressive treatment. In my previous state of renal failure, I would have died without dialysis within weeks. But now, I can get by, barely, on my own kidney function and following a very strict diet.

Denise will have a full-time job of sterilizing our house and trying to find the very few foods I can eat. Due to the strict renal diet + immunosuppressed diet + low cholesterol (the chemo caused my cholesterol to go up) the diet is very limited. No nuts, no beans, no citrus, no vegetables except lettuce, kale, carrots and no whole grains. So, I can have pasta (without sauce), deeply cooked meat and eggs, white bread, and just about nothing else. I will try to do most of my own cooking.

The neurological symptoms from my uremia (state of renal failure before I was diagnosed and started on dialysis) have not improved. It is my greatest distress. It is hard to explain to someone else why these symptoms are so horrible. But I have muscle twitching from my thighs to my tongue and it is 24-7. It is so bad that I had to do a full mental health work-up here after I mentioned that I considered blowing my brains out because of the twitching. While the twitching is common in uremia, to be this severe and without resolution is not so common. The psychologist is trying to teach me coping skills so that I don’t let the twitching drive me crazy.

I’ve had a profound answer to prayer (whether you believe in supernatural answers, or the fantastic abilities of the human body to heal) in the fact that it is looking more and more likely that I’m done with dialysis. I will dance in the streets when this is a sure thing. I will dance naked if you want.

The next big area is for the twitching to stop. It does stop sometimes for 5 minutes and that feels great. Then it comes charging back. We have tried medications, gabapentin and lorazepam without a clear benefit.

Then of course, pray for me to survive the transplant process and that it will give me many years of life. I don’t want to die. Dying at 63 is unfair. Dying at age 100 is unfair. Certainly, dying in your teen, twenties or thirties is unfair. Death is unfair. I can’t imagine (and I’ve tried) Denise and the kids living without me. It is too painful to picture.

Except for the twitching, I (we) seem to be handling things quite well. However, I feel that there is this thin veil of wet tissue paper between Denise and me and our total emotional collapse. When I have bad news, like when my potassium shot up last week and there was a threat of putting me back on dialysis, I had uncontrolled sobbing. I have had 3-4 episodes of massive sobbing in the past six months, then I pull my act together. Maybe it is an act.

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I think Denise has had the same, but she hides it from me so I can’t count her episodes. She was raised to hide her emotions. I came from a family that showed them, like the Italians. Denise use to make me go outside to cry if we had kids in the house. I think she finds private places to cry as not to distress me. It wouldn’t. I remember my mom laying face down in our kitchen floor crying when her father died. I laid down beside her… I was twelve.

I am thankful for Jerry’s visit yesterday. It was nice to see an Anacortes face. It was nice to see any face. I’m enjoying the book he gave me, Everything Happens for a Reason, and other Lies I’ve Loved.

I will keep you posted as this battle unfolds, but not with so many words.

Mike

 

 

 

More Numbers

My potassium was down a whopping .7 points (down from 5.3 to 4.6) overnight. This is a very good sign that dialysis is over. I’ve missed 4 dialysis sessions so far and feel great. If I can go one more week and stay out of trouble, the nephrologist will turn my central catheter over to oncology to use for the next six weeks. If not, I go back on dialysis and will have to have a second catheter placed for the chemo.

Now, the tide is in my favor for getting off dialysis. I was able to bring down the potassium by diet alone. I will have to follow a strict diet going forward. Image result for kidneys and numbers

I am very excited about the possibility of getting off dialysis, but there is one caveat. The process of chemotherapy, which I will undergo the week of June 9th, can be very hard on the kidneys. So, it is possible that my kidneys have recovered enough now to get off dialysis now, but when we are done with chemo, I may have to go back on.

On the flip side, if I complete the stem cell transplant process, and if it works, the bad proteins that my bone marrow is producing will be so low, or even normal, which would give my kidneys the opportunity to return to almost normal in coming years. So, in summary, I still need prayer about this.

Mike

The Numbers Game & Other Matters

Real life is messy. If I were living in a Hallmark movie (my least favorite movies) then the results of my lab tests would have been overwhelmingly positive and clear. But there is good news with caution. My potassium level did come down by three decimal points. Not much, but moving in the right direction and putting me back in the normal (but high-normal) range. For this I am very happy.

noodles

The word of caution is that I’m still not out of the woods. I will not have to go back on dialysis for the next week but have  my blood drawn daily. I achieved this dropping of my potassium level by a very strict diet of eating nothing but plain noodles without any toppings for two days, and in a measured quality. This diet is not sustainable, but is extremely low-potassium. Time will tell, but I’m still on thin ice.

I met with my doctor this afternoon and we know the plan. I will be re-admitted to the University of Washington on June 9th and on that day I will receive my first dose of harsh chemotherapy  to kill the bone marrow and cancer cells. On June 10th I will receive the second dose of chemotherapy. I will have one day off and then my stem cells will be re-infused on June 12 and 13. I will remain in the hospital (depending on my side effects and etc.) for a couple of weeks.

The choice that we must make now is whether I’m given a low or higher dose chemo. The higher dose will increase the mortality of the treatment by double (from 2-4%). It will definitely increase the bad side effects. However, it has a better chance of putting the cancer into lasting remission from 25% to 45% chance. It is a tough call. Life is messy.

 

NUMBERS: The Waiting Game

Anyone who has suffered from cancer, plus a few other diseases, are familiar with the waiting game for the numbers from tests. In these cases, one digit, one way or the other, could mean that you are living or dying. It could mean if your cancer is growing out of control or going into remission.

I’ve heard patients say that the numbers don’t meany anything to them because God is in control. Yet, I see the worry in their eye. Yes, God can be in control, but the numbers tell us the reality. No one has ever died with good numbers or the reverse. As a medical provider, the numbers carry more meaning, which is both a blessing and a curse.

While I’ve waited for numbers many times over the past few months, numbers that tell me how my kidneys are doing and numbers that tell me how my cancer is doing, the major number I am waiting on today is about my kidneys.

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I am finishing up my second week off of dialysis and I’ve been feeling great. My numbers, on Monday, were very promising, suggesting I was done with dialysis forever. Then Wednesday, I had a sudden rise in potassium. Potassium is one measurement of kidney function that can kill you quickly, so, even if all the other numbers are good and this one is bad, I will go back on the machine. I cannot express how depressing that would be. Dialysis makes me feel horrible for days, and then it is time to do it again. It means I can’t travel. It would mean that my chances of beating cancer are far more guarded.

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In two hours I will have my blood drawn again. I’ve done everything I can do to reduce my blood potassium. It will take about two hours for me to see the results. If it is bad, the machine stands waiting and the news would be devastating. Being back on the machine would mean that I have to go forward to fight cancer with one hand tied behind my back. It would mean that I would have to go back to feeling terrible all the time. But the numbers will tell and waiting for them is nothing short of tortuous.

UPDATE: 5/26/19

Denise and I were granted a 48 hour pass to come home to Anacortes and to pretend that things were normal. It was fantastic! So many things we got to do which we love, dinner with family, hikes, paddle board, campfires and deep breaths of Fidalgo Island air.

Kayaking 1
My dry suit covered my tunneling catheter (in my chest) well, protecting it from nasty lake water.

An unexpected treat was that the person who took our dog for the summer, could no longer keep her (dog Vs cat issue) so we got to pick her up an snuggle  with her for hours.

There were times that I never thought that I would see inside the cockpit of a kayak (my favorite hobby) again, especially back in the winter when I thought my life was very short. But, with careful planning and help from Denise, I was able to circumnavigate Lake Erie today (our Lake Erie, not the really big one). A dry suit offered the protection of my chest catheters from the dirty lake water. Denise followed in her paddle board.

Now that our dog is home, Denise is scrambling to find coverage for our house and dog. We have a house setting coming in two-three weeks, but we must figure out what to do in between.

Kayaking 4
(I would take more photos of Denise but she does not want me putting photos of her here. But that is her behind me on the paddle board.)

 

Speaking of chest catheters, I have now finished my first week without dialysis, out of a two-week trial. I feel fantastic! The combination of not doing chemo for six weeks now and not doing dialysis for one week, I feel 90% human.

Kayaking 2
Ramsey (I know darked out on this photo) came home to watch Greta for this coming week, then he must get to LA.

We are watching my urine and blood chemistries every other day. Because they were so stable on Friday, the let me come home. Tomorrow (5/27/19) with be a crucial lab. Then if things are going well, I will remain off dialysis one more week, then possibly forever!

I will be back with an update as soon as we know if I can stay off dialysis. Oh, by the mercy of God, I pray that could happen.  I must be back at the clinic in the morning. We are giving my body two weeks to recover from the work-up and stem-cell harvesting and then, around June 4th-5th, I will be re-admitted to the hospital and start the brutal process burning out my bone marrow and re-introducing my stem cells.

Kayaking 3

Mike