Author: Jothi

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, labs

Labs 3/8/25

Jothi

Hello all. Here is the most recent snap shot of my blood. I view it, and it turns out my doctor also views it as a mixed bag. My m-band disappeared last month, which I was excited about. At that point, it had been six months since my car-t, and I was excited that my engineered cells were still alive and doing their job. I still had a faint showing of IGG lambda on the Immunofixation Electrophoresis test, which hinted that there is still myeloma in me.

March’s labs continued to show the faint hint of myeloma in my blood, even though my m band had zeroed out. So that was not the best news. I had a meeting with my specialist shortly after the blood test results. He was saying that most people would have zeroed out completely by now if they were going too. Having a smidge of protein on the immunofixation electrophoresis at this point is concerning for him. He did concede that there have been cases of people taking longer than 7 months post car-t (which is where I’m now) to have normal blood.

We are going to do a bone marrow biopsy and do some cancer counting on a cellular level to get a better idea of what’s going on.

So I have mixed feelings about it all. The cancer is under control but likely is still there. The doctor is thinking about recommending bi-specifics shortly (pending bmb results) to try and put a boot on the cancer’s throat.

I’m trying not to jump to conclusions prematurely, since there is prior data saying that car-ts can still being doing their job, just slowly (?). It’s been nice not being on any treatment though, other than antibodies. So the thought of having to go back on something is not a welcome thought.

Hurmph…. The life of a person who has been touched by cancer…

Blog

Stitches Through Time

Jothi

When I was younger, I used to embroider with my grandmother, probably mostly to keep me out of trouble. I wasn’t very good at it due to my young age, but it is still a memory that we created.

A few years ago, I was thinking about time. You pay time for all sorts of things, and a number of them you don’t end up with anything for your time. Excessive social media use is one prime example. Scrolling for a bit can give you some entertainment, but after a certain point, you don’t gain anything.

I was talking with my wife about doing some embroidery again. She got me a kit for my birthday, and she retaught me again. I completed one and decided to start on another. I thought it would be fun on the second one to take a picture each time I worked on it, and at the end, create a video. It took me nearly a year, with some significant time off from doing it due to treatment, but I finally finished.

I hope you enjoy watching my stitches through time.

labs

Labs 12/14/24 and 1/13/25

Jothi

Here are my latest set of numbers for curious people. It’s been around 5 months since I had my car-t cell infused. By the looks of it though, I still have cancer in my blood at this point. I asked the doctor about it, and he said my having a value for my m-band didn’t necessarily mean I have malignant cells still circulating, and that sometimes it just takes awhile for the m-band to clear.

It has never taken me this long to clear my m-band, and it feels like a bit of sugarcoating on his part. But I’m trying to keep an open mind about it. I find my anxiety level is a lot higher after my car-t, which come to read recently, can be a side effect of car-t.

My light chains are still obliterated, which is good on the cancer front. In December, my m-band had a 50% drop, from .4 to .2, which I was pretty excited about. In January though, my m-band didn’t seem to move at all, which I feel kind of stinks.

Although to be fair, my December test, I could have been at .2999 and it would still show .2, and now I could be at .2001, which would also show as .2. The test isn’t that sensitive though, so I’m having to try and not worry about it for another month until my next test.

My reds in my blood are still lousy. They never recovered after my stem cell transplant and are beat up more from the car-t. But they could be worse, so I’m still eating my plant iron to try to support them.

I had a new blood test done in December called TBNK Single Platform. It is a test that measured my various T cell levels, which I found pretty fascinating. In a nutshell, after some research, my low CD4 reading is normal after car-t, and it means that I have low immunity against germs and viruses. CD4 T cells also support cancer-killing T cells to do their job, so low isn’t the best, but it’s expected. They just have to work hard.

My CD8 T cells are high, which means my genetically engineered cells are doing quite well, multiplying and there are plenty of them to do their job of disposing of myeloma. I guess I just need them to get in all the little nooks and crannies in my body to do their job completely.

Overall, I do feel pretty good. Being off all treatment is awesome. I’ve taken up jogging again, which does feel good to move my body, get my heart pounding hard, and work out my lungs.

I did get sick at the beginning of January, which did end up sending me to the emergency room. My sickness wasn’t too bad, and honestly it did tick me off that I had to go to the ER. My fever spiked up to 102.4 and that’s what earned me the trip. It was just a run of the mill virus after all the tests that were done. It has taken me 2 weeks to mostly get over it, though. My wife caught it from me, and it took her only 3 days to get over it.

I guess CD4 cells really matter…..

TBNK Single Platform
Blog

The Gift of Giving

Jothi

This is a repost of an post from a previous year. But as we are at this time of year again, I’m thinking about the gift of giving again. Something new that I’m reflecting on this year is that my children are aging. In my opinion, children, especially young children, really make Christmas time memorable. Their excitement and anticipation are just so much fun. It is really something special.

Another new experience for me this year is that my two older children have significant others in their lives now. Having two new individuals into our family is exciting. I couldn’t help fast forwarding in my mind 5 to 10 years to glimpse a picture of what our family will be, and what my wife and I have been working so hard to create is coming into fruition.

My youngest is now 14, and I’m realizing that I only have a handful of years left before he starts outgrowing the excitement. It will be awhile before the next generation in our family comes, so I’m really cherishing the present.

Anyhow, here is the original post…

I’ve been thinking about gifts a lot lately, obviously because of what time of year it is. This is something I really wanted to write about, but I’ve been spending so much time with family as of late, I haven’t had much time for writing.

I have some fond memories of opening or receiving gifts. I remember exploding with happiness and joy, one year when I was around 11-12. I had just unwrapped a Game boy! I had really wanted one so bad. Can you imagine, playing black and white (actually, I guess it was kind of greenish) Tetris in the palm of your hands! (Yes, I’m a bit of a geek at times) It was so amazing. I can see any young people reading this rolling their eyes, but this was really cutting edge technology. It’s nothing compared to today’s technology, but back in my day, HOLY COW!

Or the time my Dad got a basketball hoop and hung it on our garage. Finally, I could shoot hoops as much as I wanted. One year, my Dad had some new asphalt laid on the driveway, which included in front of the garage. It was a brand new court, no more bouncing the ball on a random rock and shooting off in a different direction. The pavement was a thing of beauty.

I remember one birthday, maybe around the age of 11, I spent almost the whole day volunteering. I came home just for a little bit, barely had any times for presents or cake. I remember going to bed that night, thinking it was my best birthday ever. (I do remember getting Mario Bros 2 for NES, which was awesome until I realized Nintendo pulled a fast one on everyone, and it wasn’t a true Mario game). Maybe at this point, I had received a glimpse of giving?

Fast forward a few decades and I had children of my own. Holidays with kids in the house is 1000% better than not having them around. They just ooze with anticipation and excitement. It’s so much fun to be around. I loved shopping for and buying wooden Thomas the trains, legos and craft projects for my children. One year, I was hunting for a wooden Cranky the crane (from Thomas) that my eldest son really wanted. I finally found one on eBay, new and for a price I wanted to pay. Score, victory! My son exploded with happiness as he unwrapped, opened the box and started cranking the handle to move the string up and down, carrying a piece of cargo.

By this point, I was on board with giving. I was married and wanted to give whatever I could to my wife and make her happy. We started having kids and I wanted to give them whatever I could and make them happy. I was a giving pro or at least I thought (legend in my own mind again).

As it turns out, it’s actually quite easy to give things to children and they get happy and excited. What about adults?!?! Try to give something to an adult and have them radiate happiness and joy.

Throughout my life, I’ve heard the saying, “you can’t actually give anything away.” I thought, “that’s nice”, without understanding. Within the last 5-8 years, I think I finally have understanding and that increases every year. I’m a believer.

As it turns out (Again!), it’s actually the person who is giving, who is the one who is benefiting the most!

Wow, what a lesson, and I don’t think it’s a lesson that everyone learns. I’m not sure if I’m reaching an age that has some wisdom that comes with it (I still have a long way to go in the wisdom department, maybe by 80 I’ll be wise?) or it’s part of my cancer-university (growth) or what? Of course it helps to have some givers in my life that I can observe. Maybe in another 10 years I will finally get it completely.

I think people who just buy everything that they want for themselves, because they can or don’t care to take the time to give, are the ones who are really missing out. I find that a shame for them and actually pity them.

True giving, taking the time to think about, find, buy or make a gift and have it be something that brings happiness or joy to a person, is something special for the giver. They are the ones who get that good feeling in their chest, that true happiness radiating from and around their heart.

And if you want to talk about true happiness, try volunteering or giving your time to someone in need and receive a (golden) genuine “thank you” in return. Holy cow! That’s something that nurtures your soul.

Of course, you don’t always give or get what (they) you wanted. It’s probably not possible 100% of the time. Perhaps, it’s more about the energy or the wanting to give, that comes with a gift, than whatever the gift actually is. That’s maybe what’s actually important.

I can’t speak for my parents and the game boy, but I have a feeling, as with when Cranky the crane entered ours lives, that my wife and I were the real winners that day. As my years, holidays, birthdays and anniversaries go by, it’s more important for me to give than it is to get, because I’m the lucky one in the end, who receives the Gift of Giving.

Blog

I’ll See You At My Funeral

Jothi

Let me preface this by saying this is not about me suddenly approaching death, so calm down. This is a post that I’ve had rattling around my head for a few years. I didn’t think I would ever write it though, thinking it might be too offensive for some people. But lately, I’ve had some death and near deaths in my circle, so I decided to write it. So if you’re easily offended, or you are uncomfortable with your own self, you better stop reading here.

I find it a bizarre practice that people take the time and effort to go to another person’s funeral when they didn’t take the time or effort to be in contact with the person when they were alive. It’s a bit of a head scratcher for me.

I’m mean, I get people wanting to pay their last respects to a person and say goodbye. But wouldn’t it make more sense to show a person how you care when they were alive? I’m pretty sure that a dead person isn’t concerned about spending time with a living person, but a living person may be. Does a ghost of a person hover over their casket with a clipboard and list, checking off people that show up for their funeral?

“Oh, Uncle Jim and Auntie Sue are here; that was really nice of them to come.”

“Hmm… No Uncle Steve…… geez, I thought we had a better relationship.”

I do believe that actions speak louder than words, or your actions go to the core of how you actually feel. If you say you care, but your actions don’t reflect that, then I think that your actions are saying what’s truly going on.

“I care about you; let’s talk/visit/create some memories.”

“I care enough about you to attend your funeral; see you there!”

To illustrate, I will use some of my own recent life’s experiences. I have an aunt and uncle in their mid 80s and by their own description and their children’s description, they are really slowing down and aren’t able to do certain things anymore. Realistically, they could pass anytime or they could live another ten years. They live thousands of miles away, so visiting is a challenge. It’s easy to let distance be an excuse and a barrier. So I have to ask myself, how much do they mean to me? I can still email, call, or video chat, which are all easy, with minimal effort.

Now comes the bizarre part about being human. Despite how easy it is to pick up the phone, a lot of people don’t. Send a text message in one minute, nope! As human beings, we come up with all sorts of excuses on why we do things or don’t do things. I know I’m guilty of it. I think an excuse is really just a justification in our own minds on why we do something, to make ourselves feel better.

I know people have their own lives and are busy doing them. But they aren’t busy all the time, and then it comes down to a choice, whether it’s a conscious one or a subconscious one. Is this person important enough to me to call/text/email/visit or are they only important enough that I would go to their funeral?

In the case of my elderly aunt and uncle, I made the choice to stay in contact with them because I appreciate having them in my life. But that was an easy one, so let’s ratchet up my internal difficulty.

Recently, another one of my elderly aunts had a heart attack. Which, in its own right is a challenge. To top it off, they discovered while she was going through all her procedures, she has cancer. So to combine age, heart and cancer, it’s a hard road going forward.

So I find myself evaluating our relationship. Again, living thousands of miles away, but this time, I’ve only spent a handful of occasions with her. She has never reached out, except through my parents, and I’ve never reached out either, so it has been a minimal relationship. I care about her as a person, but how would I feel if she suddenly died? Do I try to rekindle a relationship? Or is she someone I see at a funeral? The ball is in my court. All it is, is a choice and an action. Again, it’s pretty easy to email someone.

This post is not about me judging people; this is just an observation of mine. My whole point of this piece is to give encouragement to value the people you value in your life while they are alive and not wait to see them at their funeral.