Tag: gratitude

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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.
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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.

Blog

A Reason For Hope

Jothi

It’s been a pretty crazy last couple of months in my myeloma world. My March labs were a bit iffy. Things looked pretty good, but I still had a hint of myeloma showing up. We were going to do a bone marrow biopsy, but that never happened due to something on the doctor’s end.

I went into April’s labs expecting more of the same, crossing my fingers for zeros. Most of my labs came back in the normal time frame, light chains still normal or low. My immunofixation electrophoresis (which is a myeloma blood test) didn’t come back in the normal time frame.

“What’s going on?” I asked myself. “Where are the results?”

The days went by, and they didn’t result. Finally, half of it resulted late in the week, and it showed a reading of my m-band of .2. Previously I was at zero, so this was not good.

The second part of the test came back that afternoon, and I didn’t think it was going to show anything new, so I casually opened it and looked at it.

“Positive for IGM Kappa”.

“WHAT?!?”

My version of myeloma is IGG Lambda. Why is it showing IGM Kappa?

Did the labs mix up my blood with someone else’s blood? I read the notes from the lab, and it says they ran the blood twice from two different vials to double check due to my igg lambda history. It was correct.

A quick search, and I found out it is possible to have double light chain myeloma. It’s like having myeloma twice. It’s very rare, and in only 1% of people with myeloma.

“Face-slap”

What did I do?

After a few moments, I turned on some snappy music and started to dance.

Can I dance?

No

This is really bad news. Why am I dancing?

Because at this point, I said, “Seriously f*** you cancer.” “If you are going to be so bent on killing me, we are going to do things my way. I won’t let you drag me down. I’m going to keep living until I’m not.”

That’s why I’m dancing.

Normally, I look at my labs with my wife, but I didn’t think it was going to be anything, so she wasn’t there when I opened it. I had to tell her the news. It was like placing a 500 pound sack on her shoulders. Being the loved one of someone who has cancer has to be one of the hardest things in the world to endure. I think most people don’t realize this, and it is greatly underacknowledged what they go through. It’s not the same as having cancer, but I think it’s up there on the toughness scale.

I expected a phone call from my doctor, but it never came.

I just kept living my life as much as like normal as I could for the next month. Another round of ivig came the next month, and another round of blood tests.

The timing of the return of the tests was similar. Light chains came first.

Light Chains – Low / Ratio – normal

I had to wait another day and a half until my protein electrophoresis came back. My wife and I nervously opened the first one. How much had things progressed in a month, I wondered?

M-band – zero

“Wow”, we said.

We held our breath on the second part of the result as we opened it since this was the one that showed IGM Kappa (or IGG Lambda).

Normal – no trace of IGM IGA IGG kappa or lambda.

My wife and I looked at each other speechless. We weren’t quite sure what to say. One, because of my previous month’s crappy labs, and second, for this being the first time in 6 years that I’ve had a normal result.

I had a meeting with my myeloma specialist a few days later. Zoom kicked on and the doctor first thing looks at me and says “you know, Jothi, I’ve never met anyone like you.”

“Umm thanks?”

He went on to talk about the IGM kappa showing up.

“I called up the lab director to make sure there was no mistake.”

“It’s unheard of someone developing a second mutation from a car-t. Maybe the cancer mutated with it’s dying breath.”

“It’s uncommon for a person to zero out this far out from a car-t.” (I was at 9.5 months post car-t)

“It’s also unheard of, a month later, the new cancer mutation being wiped out. There is no trace of myeloma in your blood. I’ve never seen this before, and I have no explanation.”

A few months ago, they were talking about putting me on treatment again. They wanted a bone marrow biopsy first, which never happened. The doctor is now throwing around the “C” word (cured), which I’ve personally never heard one say before. I’m left asking myself if something special just happened?

Now being a statical anomaly, I’m left wondering why with no answers. Did my car-t strategy of supporting my t-cells have an effect?

It’s too early to tell anything, and I know full well things can flip back the other way around quickly. I try not to get too low when bad things happen, the same goes for trying not to get too high when things go right. I still need a bone marrow biopsy to check things out on a cellular level. Without that being zero, this could be just a blip in the road. Even if it is zero, I need to be zero and maintain that for a few years before I can relax and let some breath out. Cancer is just that unpredictable and volatile.

My point with this post is not to toot my own horn or have people congratulate me. I’ve been playing the cancer game for a number of years now. I’ve been around a lot of people challenged by cancer, and I know firsthand how dire things can be at times and frankly have periods of hopelessness.

Obviously, I’m thrilled with the ways things have gone in the past month personally. I would be equally thrilled if my tale could lift someone else up and give them a reason for hope. That unexpected things can and do happen if you just keep dancing.

Blog

521 Days Left

Jothi

I went to the lifespan doctor today. I sat down in her blue medical chair and waited for her to finish reviewing my paperwork. She finished up and said,

“Hold out your finger please”

You see, I was sitting next to the lifespan machine. She pulled out a thin cord that had a tiny needle attached to the end.

“Ouch”, I cried out as she stuck me with the needle and took a little bit of blood.

The dials and wheels on the machine started whirling as it processed my blood and was computing.

It printed out a small strip of paper with the number 521 on it.

“You have 521 days left to live”, the doctor said.

“Good to know”, I replied as I got up to leave. “Thanks”.

🤔 Of course, there is no such thing as a lifespan machine.

Sometimes, I feel like I didn’t have a worthwhile day and it was a wasted. It does leave me pondering, dang, what if I only had 521 days left to life and I just wasted one of them? Sometimes, I just have to live with that thought.

Whoever you are reading this, what if you knew you only had 521 days left? What would you do that would make them good days left?

For me, seeing my wife or kids have a good laugh and a big smile on their faces, makes it a good day.

Going out in nature and experiencing things that make me be in awe, is a good day.

Doing something creative, makes it a good day.

Spending 5 hours a day looking at instagram is a good day…… oh wait, Meta high jacked my account and wrote that in there! Actually for me, those are the days that I feel like I wasted, the ones I spend too much time looking at a screen (I only spend 5-10 minutes a few times a week looking at instagram).

Next time you have a good day, try and identify what made it good and try and duplicate it. Next time you feel you wasted a day, try and find out why it felt wasted and try and eliminate that aspect.

None of us know how many days we have left to live, 1 to 25,000, try and make them count in whatever fashion counts for you.

We don’t have a machine that tells us how many days we have left. I’m going to try and do my best not waste mine.