Author: Jothi

Blog

Is This Guy Still Even Alive?

Jothi

I’m sorry, but if I don’t see someone I follow for a long time, dealing with a health condition, I start to wonder. I haven’t post since March, so if I followed me, I would wonder.

We bought a house in the country in April. We knew it was a fixer when we bought it, because that’s what we could afford for something we liked, but it ended up being more of a fixer than we were counting on (hidden water leaks everywhere, broken drain pipes in the crawl space, etc). I have a construction background so we have been doing the fixing ourselves mostly, because again that’s what we can afford.

But I’m grateful. I can go outside and not hear traffic. There is virtually no air pollution. We have land and a sky full of stars at night. We have a fruit orchard and a forest. I have space to take my mushroom business to a new level (if I ever stop having house projects to fix 😅). There are good doctors not too far away if need be.

This is something I’ve wanted for years. Pre-cancer, I remember working working working and then go on vacation, enjoy my time and start to dread going back to the grind. I came across a concept early on in my cancer, which was “better my normal life”. Instead of looking forward to my vacation, make my every day life better, and pretty soon, you have a better life. My wife and I identified what that would be for us and we set out after that goal.

I confess, I have a hard time not doing anything. So with so much work to be done, that had priority over writing.

So why am I writing now? I’m sick with some airway cold and I have a fever that is forcing me to lay around because I’m too weak. Fevers make a person suffer, although a “normal fever” is better than a chemo fever.

But again, I feel grateful for the suffering.

Why?

It makes me appreciate when I’m well. And I’ve been well for a long time now. Appreciate life, which I can take for granted. I also find it good for my ego to get taken down a few pegs when something microscopic sends me to my bed.

It also reminds me that I am strong enough to handle germs. I’m strong enough to handle myeloma. I’m strong enough to handle my life as it has played out.

Ok, a quick myeloma update.

CBC is pretty normal, I even have normal red blood cells now, low platelets. IGG is still low, and I don’t get an infusion until I’m really low. I don’t mind too much though. I react to other people’s antibodies now, so it’s not been a pleasant infusion.

I had another MRD bone marrow test, I think back in April. I was stressing leading up to it. My m-band read “detectable but not quantifiable” in March. My pain was increasing. Makes a person go through the what “ifs”.

It came back clear with no myeloma cells in my marrow.

I still have abnormal protein in my blood, but zero in my marrow. I had a meeting with the doc yesterday, and he wants to know the reason for the protein. Is it cancer or my proteins being weird? (yes, fyi, you can have a m-band reading and it not be cancer, good to remember that!).

He wants me to have an MRD test done on my blood. I heard about this test awhile ago, that they were working on it, for a potential replacement for a marrow MRD test. They would have to send the blood sent to Dana Farber, which I’m not sure where that is exactly. Oh, it’s in Boston. Well that would be a plane trip for my blood. The only hang up is, to see if insurance will approve and pay for it.

Alright, I’m going to go back to appreciating my fever and phlegm. I hope you are doing well. Cheers.

My Grandparent oak tree that watches over us now.
Blog, labs

Labs 3-25-26

Jothi

My labs are back, and here are my latest numbers. I skipped posting last month because I was busy. Last month my m-band made a peep and became detectable but not quantifiable. This month is the same. I don’t know if that’s my “pal” myeloma saying “hello” or if it’s part of an immune response. Time will tell.

I’m about due for my yearly post car-t bone marrow biopsy and pet scan. That will tell me what is exactly going on, if anything. (Spoken sarcastically) It’s always good to throw another log onto the uncertainty fire!

Surprisingly, my red blood cells and hematocrit went normal this month. As I mentioned previously, I didn’t think they ever would. I believe this is the first time they have been in normal range in about 7 years!

I went to visit my daughter in Connecticut for a week right before I had these labs done. Maybe I’m a secret New Englander at heart 🤔. I got to visit Yale, and that was really awesome. They have some really top notch museums, full of interesting historical artifacts and art. They offer it all for free, which is so amazing as well. Knowledge should be shared freely. A comparable museum here in California would cost $50 a ticket. If you are ever in Connecticut, you should visit.

Also, while I was there, I was invited to a Yale laboratory and got a tour of cutting edge research and technology that they are currently working on. It was cool to see live cells being studied and edited to combat diseases that currently don’t have solutions yet. My car-t procedure was developed in a similar lab (in China).

Well, that’s all for now. I have some big life changes (no, I’m not pregnant, first because I’m too old and second because I’m a dude) and a busy number of months coming up, until next time….

Monet
Port-Domois, Belle-Île 1887

Ancient Greece busts

The Sterling Library on old Yale campus

labs

Labs 1/27/26

Jothi

“Phew, made it another couple of months,” is what I said after opening up my numbers. It’s funny how I still have that slight apprehension every blood test. Although I think I’m still under a year from when the myeloma disappeared from my bloodwork, so I suppose it makes sense.

I’m still cancer free and treatment free, which I’m so grateful for.

My IGG took a predictable nosedive. I lost close to 200 points, and I am again below normal. But not low enough for me to get an infusion, according to the doctor, which seems like a questionable doctor decision to me. In my opinion, if you are below normal range, a person should get an infusion; otherwise, what is the point of having a normal range on a blood test?

I’ve had a minor respiratory infection for 3 weeks, and my energy is starting to go down. But I suppose I’m used to fatigue from dealing with cancer, and maybe that’s what they invented the word willpower for. Honestly, I don’t care all that much, as long as the cancer is gone. I really can’t complain.

My white blood cells are elevated from my infection, which is nice to see my immune response.

My reds and platelets are still below normal. My last dose of chemo was about a year and a half ago, and my blood still hasn’t recovered. Honestly, I don’t think it ever will recover.

I was having a conversation with someone last year, after I became cancer free, and they were telling me I could go back to normal, the way I was before cancer.

“Ummm… no,” I said.

While there is some truth to “going back to normal,” most people don’t think about how I’ve spent the last number of years killing my blood, and there are consequences of doing that. My body is changed from the ordeal. The hidden parts of cancer that only cancer people and their close ones know about.

Again, I’m not complaining; I’m just putting my thoughts out there. I’m doing well, and I’m excited for the future.

labs

Labs 12-11-25

Jothi

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.

Blog

Gratitude And Cancer?

Jothi

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.

Nutrition

Garden Chestnuts

Jothi

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.

labs

Labs 9/25/25

Jothi

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.