Well, I got through another month and a half of my blood not trying to kill me, so I’m quite pleased about that. I’m starting to get cautiously hopeful. My specialist reminded me the other day that 30% of people who have car-t are cured. But the unspoken math says 70% aren’t. That would really be something to permanently survive myeloma.
My IGG is back to normal, which makes me feel some semblance of normal as far as energy and ability. When I was down in the lower 400s, I was really dragging, and I was getting sick frequently. I don’t know what my IGM or IGA are because my doctor doesn’t like to have them tested. IGA is the important one for this time of year, being cold and flu season, and that’s what those antibodies main job are.
I’m unsure at this point whether I can maintain my IGG level on my own or if I’ll start dropping again. The car-t really destroyed my IG levels as well as the cancer, so my antibody production ability is still unknown. The doctor stopped my IGG infusions, and we will wait and see at the next round of blood tests if I can hold it.
I’ve been thinking about the subject of gratitude and cancer lately. With Thanksgiving this week, I think it’s good timing to write down a few of my thoughts.
I think most people get so caught up in their lives, what they are striving for, what they are working for, they lose sight of what they have.
I was recently part of a cancer thread on the internet. It was started by a woman who had breast cancer for a number of years, going through years of treatment, remission and relapses. Her latest treatment has failed, and she is out of options and is preparing to pass away. She was sharing how she was grateful for her life, and she also had some gratitude for cancer because it changed parts of her life for the positive.
Cancer patients who overcame their cancer and transformed their lives, transformed their being, they are the ones people usually hear or read about.
But perhaps that is not the norm?
In that same thread, another person shared, who has had lymphoma for the past 8 years. “I’m not so sure I’m grateful at this point. My entire 2025 has been cancer treatment and tests. I don’t have gratitude for anything.”
Reading that made me sad. Part of me does fully understand that thinking. Just like most cancer patients, some of the cancer treatments I have gone through have made me thoroughly miserable.
But I couldn’t help wondering to myself, why are you going through all of it if you have no joy in your life and nothing to be grateful for? What is the point? Is it the fear of death keeping you alive? I’m not faulting the person in any way, because I do understand. It’s such a shame that humanity’s answer to cancer is cancer treatments that sucked out this person’s essence.
Why do I do it? Why do I keep scraping myself off the floor (fortunately, I currently don’t have to scrape myself off the floor)? What do I have to be grateful for? Well, let me tell you.
It could be for something simple like, I’m done being nauseous after a chemo treatment. Or getting to see something amazing in nature, such as a sunrise or a 2000 year old tree.
But I think the things that I’m most grateful for are, watching my wife have a good laugh. Watching my children in their triumphs and helping them through their failures. Learning something new or having a witty conversation and having someone’s intellect rub on my own.
I really think the secret of happiness, or at least what I have come up with is, enjoy other people’s enjoyment. If I’m able to experience joy from other people’s joy, then I feel fulfilled.
I find myself somewhere in the cancer gratitude middle. I can be grateful for cancer for giving me a tremendous amount of time with my family. I’ve been able to be more involved with my children and enjoy watching them grow. It has forced me to look at myself, my life and see my flaws, and it’s given me an opportunity to correct things within myself. I’ve had the opportunity to meet other people with serious health problems who overcome things that you wouldn’t think possible. I’m eating healthier, exercising more and learning new skills.
On the other hand, it has really negatively impacted my finances and my ability to work. I’ve spent a lot of time going to treatments, being sick from treatments, and being in survival mode. If I die before I’m ready to go, I won’t be pleased. I guess I will have to see where I’ll end up to have my final answer on cancer gratitude.
I think it is important, especially when your life is challenging, any challenge, not just cancer, to remember what you have to be grateful for, even if it is something small. I think it enhances a person’s well-being, increases life satisfaction, and helps you remember why you are living.
What do you think? Does gratitude and cancer belong in the same sentence?
I’m grateful to have learned a new skill like growing reishi mushrooms.
I’m still experimenting with edible mushrooms, and I recently grew some chestnut mushrooms in my garden, which I was excited that they turned out. I took a photo of them developing over a few days to see how much they changed in 24 hours. It’s kind of fun seeing them develop.
I feel like chestnut mushrooms are a little known mushroom in a lot of circles. I wanted to grow them because I thought they looked cool and read that they taste quite good (which is true).
Like most mushrooms, they are a notable source of several essential nutrients, such as:
B vitamins: A rich source of riboflavin (B2) and niacin (B3), which are vital for energy production and a healthy nervous system.
Vitamin D: Like other mushrooms, they can produce vitamin D when exposed to ultraviolet (UV) light, which helps with bone health and immune function.
Selenium: A powerful antioxidant that protects cells and supports the immune system and has been shown to be anti-cancer.
Potassium: An important mineral for heart health and blood pressure regulation.
Copper: Essential for the formation of red blood cells and maintaining nerve function.
In addition to their basic nutritional content, chestnut mushrooms offer other potential health benefits. They contain beta-glucans, which have been shown to help boost immune function. Also, they contain antioxidants such as ergothioneine (yeah, I had to look that one up too, never heard of it, basically a naturally occurring fungus amino acid) which may protect against oxidative stress.
Anyhow, here is a little 10 second video of their growth.
I don’t feel like writing a lot about my labs this month, because I’m getting bored with talking about bloodwork.
The only thing that I wanted to briefly talk about is that my m-band is back to nothing. Obviously that is important to me, but I wanted to point it out just so other people going through car-t, see that m-band can fluctuate. I feel like that’s significant for other people to see, since shared information is hard to find.
Having it be zero and then having a hint of something and then back to zero is something that can be stressful. When I spoke to my specialist earlier in the month, he said science at this point just doesn’t have a good understanding of how it all works.
I just have to keep hoping for it to stay at zero.
I recently went to Golden Gate Park in San Francisco for a day trip. First we went to the Japanese tea garden, which is a place that I was excited to go. I really love Japanese maple trees, of which it turns out they didn’t have many, but the grounds and the buildings were really cool.
We had a bit of extra time afterward, and I wanted to walk over to the Conservatory of Flowers, to see if they had anything blooming outside. As we were walking up, I could see in the distance a bright field of color, so we beelined right for it. When we got there, it was an amazing field of dahlias. So many colors and shapes. I had no idea there were so many varieties of dahlias. So if you can’t make it there in person, here are some photos to see it virtually.
Here are my latest numbers. I find myself holding my breath every month still. Last month, my m-band showed up with a value of detectable but not quantifiable, which of course I was not happy about. This month it was the same. (M-band indicates an excess of abnormal antibodies (M-proteins) in the blood, and can be caused by myeloma or by a few other reasons.)
My doc says there are no signs of myeloma; I’m not sure if I believe him with that showing up on my m-band. Although, I don’t know what to believe in general within myself. It could be cancer, it also could be my post car-t immune system. Only time will tell. My light chains are normal, so that’s good. My lambdas went into normal range this month. They have been low since my car-t, which I guess is a year old now.
I guess I haven’t really written about growing mushrooms here on my blog. I’ve been posting a bit about it on instagram. Anyhow, I started growing gourmet and medicinal mushrooms in May, I believe. It was a bit of a learning curve to it, and I’m still learning, but I have a lot of it down by now. Growing mushrooms here at home has left me, at times, with quite a surplus of mushrooms. So I’ve been eating lots of them everyday.
Something that I learned in the last few months is that mushroom organism (mycelium) is still alive and active for up to 48 hours after the mushrooms have been picked. Being picked fresh and then consumed has exposed my cells to something different.
The reason for my seemingly random tangent is when I was looking at my CBC last month and particularly this month (it’s easier to see the trend), I was surprised to see the spike up in my red blood cells, hemoglobin, and hematocrit. It’s quite noticeable on a data point graph (posted below).
When there is a change, I like to look and see what has happened since. Not much has changed in my life other than my consumption of new and a lot of mushrooms. It could be for other reasons, but it makes me wonder if mushrooms are responsible. The four mushrooms that I’ve been growing are pink and yellow oysters (gourmet), lion’s mane (gourmet and medicinal), and reishi (medicinal). But perhaps that is for another post.
In any case, I’m left with another month of mental torment, wondering if the myeloma is percolating or if the cancer gods are just messing with me. Just keep walking is what I tell myself. I’m off to get another round of IVIG to help my poor immune system.
Well, honestly, my reaction was that I was shell shocked. This took a number of days for me to process, and frankly I’m still processing the long term ramifications of this test result.
My bone marrow CLONOSEQ report came back. This is actually the first time the report was shared with me, so I got to read the full thing myself. This is the best, most sensitive test that can be done for myeloma, counting individual cells.
Zero cancer cells in 3,709,872.
This means I achieved a sCR or Stringent Complete Response from my Car-T procedure. It also means that I’m in complete remission from myeloma.
It was funny, it somehow, for me, has a similar parallel to being told “you have cancer,” which was such a gut punch. Now being told,
“You don’t have cancer”
“Wait, what?”
It’s been a long six plus years with cancer; I feel a bit astonished.
The CARTITUDE-1 and CARTITUDE-4 clinical trials just reported with the long term results of CAR-T Carvykti therapy results. 32 patients are still cancer free 5 years later (32 out of 97 patients, 33%), and doctors are starting to call them cured.
So I have a 33% chance to be cured of myeloma, something previously unthinkable. Of course I’m thrilled with the test result. But, I think it will be some time before the cancer nagging thoughts in my head go away. The question for all cancer patients, will it come back?
I’ve had the best test available for myeloma, and it didn’t find any. But, really, all the test said is I don’t have any in my left hip. Only time will tell if the myeloma has been wiped out or if there are a few cells hiding in my right hip or in a vertebrae in my neck.
“Try to live a normal life,” my doctor told me.
I find myself in between having future test anxiety and just not caring anymore (because I hate worrying and find it exhausting).
I was talking with my wife about my parallel and my dumbfoundedness. Her thinking was that I had an identity before life with cancer and then that shifted into an identity of a person who was trying to survive cancer. Now, maybe I’m a person who has survived myeloma, I’m going to have to reinvent myself again.
I guess the trick now is not to hold my breath, let time flow, and keep making the most of life.
Carrots Over Cancer 