Health Update

Summary

It was six weeks ago today when I went to the lab for my routine, every 90 days, labs. Unfortunately, I noticed the correct labs were not done and I had to advocate to get the correct ones. Two weeks later, with the correct labs, it was clear my cancer was out of remission. I immediately went to my myeloma specialist in Seattle. As of April 28th we had a concrete plan to address the cancer and she wanted implemented ASAP. Unfortunately, it has been an uphill battle within our quagmire of a healthcare system to get this plan in place. I think most of you with serious or chronic illnesses can relate. I have no clue how patients with no medical background do this. As of last night, it looks like the new treatment program will begin on Monday morning.

My new plan will involve four medications, two by IV infusion. At least for the first two months, I will have 6-8 hour infusions two days a week. If I respond, I hope to eventually be on a once per month infusion or injection.

Sitting through several counseling sessions about the potential serious side effects is daunting. But I suspect many of you know what I’m talking about. With no real choice, but to let the cancer take its course, you say yes and press a head, hoping for the best. Our greatest hope is that this intensive program will get the cancer back in remission and then I can continue on a maintenance therapy of one sub cutaneous injection of daratumumab once a month. If I can last a few more years, good treatments are on the horizon.

Backstory (for those interested in details, family and those with medical backgrounds)

The new program I’m on is oral Revlimid 10 MG 21 days per month. At the same time I will start infusions of daratumumab on Monday and Tuesday of each week. Because it is a monoclonal antibody, it has to be given carefully at first, thus the 8 hour infusions. With that I will get methylprednisolone 100MG infusions five days per month. Another steroid, dexamethasone, will be added orally starting the third month.

From the time I had my bone marrow transplant, I have only been in partial remission. While the amount of cancer has been low (my most recent bone marrow biopsy is still pending, but my previous was 8%) and my M-spike is quite low at .1 (and unchanged), the cancer that I do have has been quite active in producing lambda light chains. While normal is 26 mg/L, I was at 2659

mg/L at diagnosis three years ago (and this is what killed my kidneys), but since the bone marrow transplant I was at 60, which rose to 90 and then with this last test, 204 mg /L.

How do I feel about it?

I don’t know why, but our society is very uncomfortable about writing about feelings, especially in the face of difficulty. I like to discuss and write about feelings because its what makes us human. Yes, of course I’m disappointed. I’m disappointed that I’m faced with cancer to start with. But this last few months I’ve felt the best since my diagnosis three years ago. Now, I will have to take a giant step backwards again. Spending more time in a hospital and with a great possibility of feeling like crap when I’m not in the hospital.

I’m about 80% normal right now with a moderate amount of nerve pain from the disease. So, going into this new treatment plan, I have strong mixed emotions. I do fear the side effects. Diarrhea is very common, but there is a plethora of others, including heart attacks. At the same time, I have hope. I have to have hope. My hope is that this new treatment will push the remaining cancer down hard. It worries my walking around with light chain proteins so high and on no treatment. If my kidneys get damaged further, it would be my worst nightmare. So, my prayer is for a good response and no side effects. I have life to live and having the feeling of the flu all the time gets old.

If this treatment fails, my next great hope to survive is Car-T (unless BiTES or a vaccine wins out first). There are two Car-T treatments on the market for Multiple Myeloma, but they still need some refining to get close to a cure. So, the longer I can delay Car-T, the better off I am, unless my general health starts to fail then it is better to do it while I’m still healthy. Speaking of which, I’m in training now for Car-T. I’m exercising more than anytime in my life. I’m practically vegan. But this fate is out of my hands.

Thanks for your prayers and support. I may post again when my bone marrow biopsy is back.

Mike

A New Podcast; Mysticism Vs Mystery

Are we in the “Dim Age?” Western civilization is cycling once again through an age when “mysticism” or experience have become vogue while reason and the search for classical truth have been relegated to the boring, “unspiritual,” or unimportant. Unlike the “Dark Ages” there is not a complete abandonment of truth and reason this time, but a possible new “Dim Age.” You can listen here.

Health Update

PET scan was done yesterday and the results are in. I am thankful that there are no new lesions in the bones. I have two that were there three years ago and have become dormient. This is good news. My bone marrow biopsy will be back in two weeks. My new treatments are still not approved by insurance so I’m still on no treatment and in limbo. Hopefully by next week I will have started the new protocol.

Thanks for your interest and prayers. Mike

On Writing

I am always eager to pass on my recommendations for novels or new authors, which I’ve discovered. I am finishing up The Final Case: A novel. Like many of the novels I read, I stumbled on it by accident. But the book caught my eye for three reasons.

The first reason, while the book “fictionalizes” real life events, it follows closely a local legal case were an evangelical family abused their children in the name of God, to the point of causing the death of their adoptive Ethiopian daughter. It was big story in the local and national news about eight years ago. The book namedrops many places that we here all know and visit.

The second reason I like the book is that it is very well written. The author is David Guterson, whose first book was Snow Falling on Cedars, which was also made into a great movie. I’m not sure why this book has a rating of just 4 stars on Amazon (my own books have done better but my early books were not written as well as David writes this one).

The third reason is that I’ve always been intrigued with human behavior, especially when people have a dark side beneath a self-righteous veneer. This is why I love candor so much. But this distance between one’s true self and the projected self doesn’t just happen in religious circles, but there are people of all walks of life who exhibit this kind of behavior. The family in this story allowed their mental illness to commandeer a religious system to sure up their own elevated sense of piety as well as to project a saintlier image of themselves to the public, while committing the most heinous abuse inside the home. In a paradox, the most evil people in the country would have known better than to treat their kids the way this deeply religious family did. But it is a sad story.

Regarding my own writing, there has been a development that was a milestone for me. I have been working on a novel, The Runner Stone (the working title) for a year and a half with 22 rewrites under my belt. This is much longer than I normally take, where I’ve written books in 2 months, but usually take about a year. This was going to be my last hurrah. I have not tried to publish a book with a mainstream publisher in more than 13 years. I had a publisher accept that book (Butterflies in the Belfry) but we didn’t agree on terms and I (foolishly, I must add) turned them down to publish it under my local label, Mount Erie Press. Since then, I knew that to financially support my writing (I’m talking about breaking even, not making money) I would have to go bigger.

I do love the art and act of writing. It has kept me sane, seriously. My manuscripts were my crack in my dark world through which I could suck in some sustaining air over the past three years. While Denise tells me to write for myself, I just can’t do that. I know that other artists, singers, visual artists, and etc. feel the same way. That without an audience, their drive to express and to grow, dies.

I submitted the The Runner Stone manuscript to an acquisition editor who works for a major publishing house. She is not the one who would decide what they published, but knows what it takes to get published, having done that work for years. So I hired her to go through the first three chapters of The Runner Stone and to give me her honest opinion if it had the quality to make it. Editors are very honest. I had one years ago tell me, “Mike, you’re not a writer. Give it up. This is terrible.” I have come a long ways since then and have worked very hard. If this editor had given me negative feedback then I knew it was hopeless. I would have thrown in the towel on my writing. However, she didn’t say that. While there is room for improvement on this manuscript, and I expected that, she told me that it was very good and suggested it was publish-worthy. So, for now, I will keep on writing.

The way it works in the publishing industry is that I must now pitch this book to many agents, each getting thousands of such pitches per year. If one takes it, then they will pitch it to publishers. But I’m excited to move ahead. I do love writing.

Thanks for listening. I’ll keep you posted about my book. Mike

Health Update

Again, sorry to be posting so often and so much about my health. As I mentioned before, this is where my family gets their updates so bear with it.

So, the new cancer battle is underway, well, almost. Today I had my bone marrow biopsy. My last one was the worst pain of my life, but brief. This was my sixth and not too bad. Maybe a 6/10, not like last time.

We know the cancer is out of control because of the lambda light chains it produces. The biopsy will tell us how much of the marrow is involved (previously it was jut 8%) and they will do genetic testing to see if the cancer has evolved into a more aggressive type.

On Wednesday I will have a PET scan to see if the cancer is showing up outside the bone marrow. I had one spot in my left shoulder blade and one in my hip on the last scan, which is typical for multiple myeloma.

Two weeks ago today the myeloma specialist in Seattle said I needed to change therapies immediately. I’ve been very anxious to get that going before I suffer further kidney damage, but it seemed like I was falling into the health care quagmire. Today, at least I got the orders done for the new treatment, daratumumab (a weekly infusion), lenalidomide, and dexamethasone. Now I will have to wait on insurance approval which could take from a few days to a few weeks. I will be on this aggressive treatment program for two months and if the lambda light chains drop, I can go on one agent alone, daratumumab as my maintenance drug. I would stay on that until someday, weeks or years, it stops working then do the more radical treatment such as Car-T.

So, that’s where I’m at. I had been feeling pretty good (80% of normal) but there is a great potential for side effects of these new meds, but I will hope and pray for the best.

Tonight was a lovely night, cooking delightful neapolitan-style pizzas in our outdoor pizza oven, then sitting by the campfire eating it with Ramsey and his girlfriend Kate. The lake was lovely under an azure evening sky, eagles perched high in the Douglas firs looking for trout. We kayaked across it in a lovely ash-framed French (Nautiraid) kayak I just restored. A chilly, but bearable breeze was coming off Puget Sound and clearing away the smoke from the fire. Such a pleasant evening, I’m afraid that we were the source of the angels’ envy.

Thanks again for your interest, love and, prayers.

Mike

A New Podcast, and it’s Not Mine

I have been writing, blogging, and now podcasting on what’s wrong with the modern “Evangelical” movement since 1990. I have been tempted to revisit the abortion question with the Supreme Court leak on banding abortion, but I’ve fought the temptation as I have done enough. But I just listened to a great podcast on the history of the evangelical movement and how the abortion issue is now their most sacred cause, what I would call idolatry. It is consistent with what I’ve been trying to say since the 1990s, but they say it much better. For example, it may surprise you the the evangelicals voted to support women’s choice of abortion until the mid 1970s. But you can find this great podcast here.

If you have not listened to my podcasts about abortion, my simple points are, 1) The vast majority of women do not approach an abortion nonchalantly, but as a painful choice. 2)Those who do approach it as just another form of birth control, while rare, need to understand the value of the fetus. 3) Evangelicals argue that the Bible says the fetus has the same value of a full human, from the moment of conception. The Bible, however, says almost nothing about abortion, but does imply that the fetus is of value as a “human in the making,” but not fully human (see Exodus 21:22 and listen to the interpretation of Jewish ancient Hebrew language experts and not evangelical pastors). 4) But those arguments only matter, as a side bar. The greater point is that the criminalization of abortion is a lazy, horrible, and unloving way to approach this problem. The watershed of abortion is unplanned pregnancies. We have the power of almost eliminating unplanned pregnancies in a loving way by fully supporting reproductive health and unwanted-pregnancy prevention and decreasing the financial burden of new babies on the poor. It was predicted that the abortion rate would increase under the previous administration’s actions to reduce support for reproductive health for women and that came true as the abortion rate increased for the first time since 1980 under that administration. But I digressed and presto I’ve given into temptation (and steroids), I have written about abortion once again. But my spirit is to find something we all can agree on, not to sew division. We can all work together to support women lovingly, to support reproductive health and reducing unwanted pregnancies in a loving way and therefore almost eliminate the need for an abortion. My two cents on an emotional issue.

On an unrelated note, my cancer is still in limbo, but out of control. I have a bone marrow biopsy in the morning and meet with my local oncologist so I hope we can get a new plan in place. I will update you in a few weeks.

Happy Mothers’ Day!

New Pod Cast; I Think, Therefore I Am … Not Spiritual

I’ve uploaded a new podcast with the above title. Christianity has had an unhealthy conflict between faith and reason since its beginning. But Christianity teaches that God is the creator, including the creator of our reason as our means to finding truth just as our eyes were created to see light. Reason, while not perfect, is God given and beautiful. The idea that reason is from the devil or not as important as faith, has had dire consequences with the loss of objective truth throughout the church’s history. You can listen to it here.

Health Update Part IV + New Pod Cast

So, as I was saying, I repeated my labs at the Seattle Cancer Care Alliance on Monday. The results came back and my lambda light chains, the protein my cancer makes, did come back 20 points lower than my Anacortes labs, however, that was not enough. It still shows an increase of 60 points in 90 days, thus meets the criteria of my previous partial-remission cancer, now being “relapsed.”

I just got off the phone with my Seattle oncologists. I will go back for a “staging” exam, which includes a new PET scan and bone marrow biopsy. Oh, how I love bone marrow biopsy’s, it’s like giving birth to porcupine through your nose. No, its worse than that and I bet many of you have had them. Then I will start an aggressive three-drug chemotherapy for at least two months. If and when the numbers come down, I can end up on a single chemo. (if you are interested the “three prong-approach” will be sub q daratumumab weekly, lenalidomide oral daily, and dexamethasone 40 mg weekly).

Yeah, I’m disappointed. All the drugs have terrible side effects and wear on your quality of life. But what’s my choice?

The other bummer is that my sudden improvement of my kidney function was not seen on my Seattle labs, thus now thought to be a fluke. Depressing. But we must solider on with God’s help. I do have much to stay alive for.

I have a rather timely podcast that looks, philosophically and theologically, at the false notion of, “All Things Happen for Reason.” You can hear it here.

Thanks for your prayers and support.

Mike

Health Update III

Don’t mean to be melodramatic by posting again, but this is where my family gets their information about my cancer.

I met with my Myeloma specialist today. We repeated the blood tests to make sure they are accurate. Results will be back tomorrow or Wednesday. If the lambda light chains are as high as they were with the Island Hospital labs, then I will go on an aggressive three-drug chemo, once a week for two months. If the counts come down, then I could graduate to a single drug chemo. This was not the plan we had discussed before but she wanted to be aggressive with a proven treatment. Yeah, I’m disappointed as these drugs come with side effects. The most disappointing part was I had almost tapered off steroids and if I do this regiment, I will need to take ten fold what I’ve been taking. Steroids tend to make me manic where I write 10-page blog postings or 500 page books, have sleepless nights, and buy things on Amazon that I don’t really need like Kevlar underpants (joking). This is not to mention people looking at my steroid round face and telling, “Mike you’re getting fat.” It happens more than you would believe. Geez, not much dignity left when you are fighting cancer. But I’m still loved–so I hope.

Mike in Six Months

But a glimmer of hope is that the tests today would come back much better, which would be just shy of a miracle. Thanks for your concern.

Mike

Health Update, Part II

Thanks for your interest. As I mentioned last time, my renal function had improved, for which I am deeply grateful. However, the lab did not do the correct tests last week to measure my cancer progress so we were in the dark. Via self-advocation, I was able to get the correct tests done yesterday. The results came back today and I’m disappointed. The cancer activity has increased in the last 90 days, sending my lambda light chains (which the cancer makes) from 123 to 204. So, it appears I’m certainly coming out of remission. The silver lining, if there is one, is that we have a “plan B” in place. I’m going to the Seattle Cancer Care Alliance on Monday to discuss the plan going forward. I’m still elated about my kidneys, but pardon my French if I say about the cancer … damnit!

%d bloggers like this: