I tried to make it through the day without saying anything, but if I remained quiet, I’m afraid the stones would cry out. If you don’t agree with my statement below, you are still my friend and someone I love. If you agree and want to share it, feel free.
For those who cannot visulize the above photo on your mobile device the following is the text:
Tonight, I feel a great sadness for the white evangelical church—my old church—for the following reason:
Yes, the fetus is of great value and is precious to God, the mothers—more so.
Unplanned pregnancies are the watershed of abortions and are easily preventable but as a society we are unwilling, some preferring to legislate instead.
Prior to 1970 the evangelical church was ambivalent toward abortion.
By the end of the 1970’s the evangelical church made anti-abortion the key issue in their culture wars against a greater secular society despite the fact the Bible never mentions it and it was never on Jesus’ radar.
In 2016 the white evangelical church got into bed with the devil in exchange for the power to legislate their will on society regarding abortion.
In 2022 the white evangelicals felt vindicated for getting in bed with the devil, and in that bed their destiny now lies.
My results have come in early, and like I said there’s much at state with this. I’ve been on a new chemo for 4 weeks and it was to check if it was working.
The best measurement for my kind of Multiple Myeloma is following the Lambda Light Chain Proteins. Normal is 26.3. When I was diagnosed it was 3,000. I just met a patient like me whose was 5500. The best mine had ever done, since diagnosis, was about 50 and that was immediately after my stem cell transplant. It was 245 four weeks ago. I was hoping the chemo would bring it down to 200. Well, today, after four weeks of intensive therapy, mine was 27. That is a mouse’s eyebrow to normal. The ratio Lambda/Kappa (an even better marker) was normal. I’m stunned. This means that the chemo is working and after another month I can start to streamline the program.
My present intensive program, while starting out with very few side effects, has gotten much worse this week, so it’s a godsend knowing that this intensive program has an end. Thanks so much for your support and I was too giddy to wait until Monday to share the good news. Mike
For anyone who has had or has cancer, or any other serious illness, you are familiar with the test-angst. After a while, at least for me, it become so mundane, that even though the test will tell you if you are going to live or die, you eventually loose the angst. You have to, or go nuts.
On Thursday June 16th, will be a landmark test with much at stake, enough to evoke that old angst, but not to the extreme. My new 4-drug intensive chemo program is half way through. It is time to check if it has had an impact on the cancer. It should. I was on a relatively weak chemo for 1 1/2 years and I slowly came out of remission. So this intensive program should be a knock out punch. However, we all know that life is not fair.
When I had my stem cell transplant, the transplant team said that they had rarely seen anyone work as hard as I did to get better. While they couldn’t get some of the patients out of bed, I finished a 26 mile marathon within the halls of a UW Medical center. Yet, some of those patients who did nothing to help themselves have had spectacular results from their bone marrow transplant, me, not so much. With that said, I must prepare for all possible outcomes. I will not know the results until Monday, June 20th. I will share what is at stake.
If my cancer numbers have not come down at all, or continued to worsen, it will be a personal disaster. I have one more chemo I have not tried, but then I’ve exhausted all the possibilities. There are a few chemos that I cannot take because they would destroy my kidneys. There are aggressive treatments, Car-Ts that would be a potential cure (verdict still out) but require a long waiting list as there are many more patients wanting this treatment than are slots available. There are new Car-Ts in the works that I could probably sign up for, but they too have a long waiting list.
If my cancer numbers are only slightly less, all is not lost. I would still have another month on this intensive program and then test again. If the numbers are only stable after two months or have had slight improvement, that would not be good because it would mean I would have to stay on this regiment long term. While I have not had severe side effects, the minor ones (severe insomnia, complete loss of taste, fatigue) has lowered my quality of life a great deal and it would hard to think about living in this state.
If my cancer numbers are much better, then I will celebrate. This would mean that the program is working and then I would only need one more month of this intense therapy, and then go on a maintenance of one drug (daratunumab) once a month, and that drug is not causing any side effects.
So, you know how to pray, how to hope and I will give you an update on June 20th. Thanks for your support for me and my family.
I’ve shared before that I am attempting to get my new novel, (Working Title) The Stones of Yemen, picked up by a major publishing house. While anyone with a couple of grand (or less) to spend, can get a book published, the real prize is being accepted by a real publisher. It is not easy. When I wrote my book, Butterflies in the Belfry, I approached one publisher directly and they accepted it. However, we could not come to terms on the price of the book. They wanted to market it as an academic book, priced at $35 per copy. I felt my own mother wouldn’t pay that much. They thought I was foolish to walk away from a publishing contract. I think they were right. For mere-mortals to get a book published by a major publisher is a very big deal. These days you must have an agent to represent you to a publishing house because the publishing houses don’t want to deal with 1,000 submissions every day and having to pick one per week to publish.
Most writers, even very good ones, describe to me how they have approached agents by the hundreds, only to get the same number of rejection letters, usually within days. I have now submitted The Stones of Yemen to ten agents and have had one rejection. The other nine are still pending. So, my fingers are still crossed. If the agent accepts my book, they may want me to make some changes to better suit a particular publishing house. Then they would represent me to that house. If accepted by the publishing house, we would go through another long process of editing before it would hit the market, so this all takes about a year. The reason I want to have my book published by a traditional publishing house is that they do all the work and they introduce my book to a world-wide audience. Most writers, including myself, write for others to enjoy. My last book, Ristretto Rain sold about 2,000 copies. I was elated. However, that brought in an income of about $2,000. That would not be bad except that it cost me that much just for a professional editor to review it, so in the end, I still lost money. I don’t write to make money, but if I can’t cover my expenses, I will have to stop writing and I love writing.
New Podcast: Religion Vs Science, Part I (of three) Foundations
A new podcast that starts to address the problem with the war between religion and science and its practical implications. If God exist, he/she exist in reality. The better we know reality, the better we can find God. Reality is best found via evidence. Religion, however, is often based more on subculture-dogmas (not the Bible as Christian groups claim) without evidence and often in spite of contradicting evidence. Listen here.
There is a myth within the Bible-belt (and other areas of religious cultures) that the more spiritually-minded someone is, the less the sting of death. I turn this on its head by saying, those who know God best, mourn death the deepest. You can listen here.
People have been asking, so I thought I would respond here. One week deep into a new and aggressive chemo program, one that had a list of potential side effects that would make a chemical weapons expert cringe, I am happy to announce that the side effects have been minimal. Side effects can always appear later. We will not know it is working for two months. There is a lot at stake. If this program fails, the best medical terminology to describe that situation would be, I would be screwed. If I get any data along the way to suggest if it is working or not, I will share that. Thanks for your continuing support.
Sorry to do this here, but I wanted to speak to Kelsey H. I received your letter but the envelope got tossed and I didn’t have your address to respond (not that you wanted a response). I just wanted to say thank you for your very kind words. I’m so sorry for what you went through last year and I’m so happy that you are better now. Certainly I remember you and am so glad your saga with pain finally ended.
I am continuing to work on my most recent novel, The Stones of Yemen. At this juncture, I’m involved with the arduous process of finding a literary agent to represent this work to major publishing houses. Previously I had either self-published books or published them through a small publisher with a narrow market. I do believe that this book has arrived to the level of being publishable in the more mainstream market and I’ve had editors reassure me in that conviction. However, it does not mean I can accomplish this difficult task of catching their eye.
Bryan Rogers, PA-C went to Yemen to save the children. He left Yemen to save the world.
While the book will likely experience further editing once in the hands of a publisher, it is ready enough to present the first chapter to the public as a free sample chapter to wet your appetite. You were a beta reader (and I’m still indebted to you) you will not recognize what the book has become, but I could not have gotten here without your help. To read the first chapter you can click here.
Back under the watchful eye of chemo. I started my new chemo capsule first thing this morning and then had a grueling, 9-hour infusing session today and it went well. The monoclonal antibody cocktail has risks of a lot of immediate side effects (cytokine storm the worse). I had one brief episode like the rapid onset of a bad cold. IV Benadryl and additional steroids took care of that. More side effects could come as this goes on, but right now I’m pleased how well I did.
Bone Marrow Results
I also got the results on my bone marrow biopsy. There are two things to look at, percentage of marrow that is cancer and the genetic signature of the cancer.
Genetics: Multiple Myeloma is a complex cancer had has many possible subtypes based on genetics. Think of it as breeds of dogs. Some are vicious, with poor outcomes and some are far less mischievous. My previous bone marrow biopsies have show that mine is more of a lapdog in viciousness. That’s a good thing. But different from dog breeds, Multiple Myeloma subtypes can mutate over time. So, you can start with a lapdog and suddenly mutate into a Pitbull/Saint Bernard hybrid. With that said, my most recent biopsy showed once again that mine is still in the lapdog category. I am thankful for that.
Percentage: My previous bone marrow percentage of cancer was averaged at 8%. My new biopsy was relatively unchanged with two samples, one at 12% and one at 5%, which would yield an average of a little over 8%. I know multiple Myeloma patients who percentage is over 90%. My noncancerous bone marrow looked healthy.
With that said, most of the news today was good news. I will go back in the morning for another grueling day of infusions. We will modify the program over two months, and if I am really lucky, I will back in remission by then and continue on a single injection per month.
Thanks again for your prayer and support. I will probably not do another health update for two months and less there’s a curve in the plan.
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.