Tag: exercise

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My Bed Has A Mind Of Its Own

Jothi

I’m at day +6 now in my Car-T process. I’m part of a newer hybrid outpatient/inpatient program for the Car-T, and I am now in the inpatient hospital section of it. I came in on day +4 as planned.

So far, I have nothing going on. No CRS or neurotoxicities, which is great, but also in the back of my mind, I’m having little thoughts “is this working?” To be fair, it’s probably a bit early for the average time for those things to show up. Although, I don’t think those side effects are an indication of effectiveness.

I get poked and prodded at all times of the day and night. They like to do blood tests at 4 in the morning, so the morning shift has numbers to look at. Sleep has been a challenge. I have this weird hospital bed that likes to guess what is most comfortable for me. It deflates where my body is laying and then inflates in random spots along my body.

“Oh, your finally comfortable, let me adjust that for you and stab you in your right kidney”.

We’ve finally figured out that unplugging the bed at night makes the bed less smart, and it doesn’t adjust itself.

I’m confined to the high risk transplant floor of the hospital, along with the rest of the patients who have immune compromised systems. My counts are definitely dropping. I’m trying to stay as active as possible because I’m not very good at sitting around. I can do walking laps around the floor. I saw an exercise bike yesterday, and they agreed to move it into my room when I want to use it and then take it back out when I’m done. That has been awesome for some exercise.

I saw that there is a felon at the other end of the hall, with 2 guards, when I was doing my laps this morning. I was glad to see that he was getting some good cancer treatment. Cancer sucks, no matter who you are or what you’ve done.

So far, 3 people have stopped breathing, or their heart have stopped since I’ve been here. They blare a super loud alarm when that happens, I think on all floors.

I’m just grateful to be the “boring patient” with nothing going on…

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MRD Zero Sauce

Jothi

My cells came back last week. From collection to arriving back here, it was about 4 1/2 weeks, which was quicker than the doctor was expecting. All of a sudden there is a flurry of medical things happening. Lots of tests, lots of meetings and driving everywhere for it all.

I have dates for everything now. 3 days of lymphocyte depletion next week. My Car-T infusion is set for August 26. Hospitalization a few days after that.

Today, I’ve been having a lot of meetings about all the drugs they want me to take.

“You’re going to take this drug for this, and it’s going to make you feel like crap”.

“And you’re going to take this drug for that, and it’s going to make you feel like crap”.

“And this drug over here, that’s going to make you feel like crap as well”.

I’m starting to feel like crap just listening to how crappy I’m going to feel 😜. This is all without even counting the side effects from the Car-T.

Sigh, modern medicine, it’s really good at making you feel like crap. “Feeling too well? Well, we have a medicine that can fix that!” Too bad nobody has that problem…

It will be an interesting and intense process. I hope the end result is what I’m hoping for. My doctor told me a few days ago that he wants me to leave from the hospital and the infusion center to be at MRD zero. Which is also my goal (MRD zero is zero myeloma cells detected in my bone marrow). Afterwards I was thinking, if I didn’t achieve that from the Car-T, how would he achieve that?

“Jothi, you haven’t reached MRD zero yet, so we are going to give you and extra portion of MRD zero sauce on your food to get you there!”

Speaking of food, I had some myeloma labs done. I haven’t had any done for about 2 months. I was expecting the numbers to keep elevating at the same rate. When I was on carfilzomib and dara, my light chains were going up 12 a week. As I mentioned in my CAR-T post, when I stopped the chemo, things slowed down a bit.

In the past 2 months, I went up 16 points total! 8 a month. That gave me an unexpected shot in the arm. Again, I find it weird that the cancer was progressing faster when I was receiving treatment. My theory is that the chemo was punching down my system, which must be dealing with the myeloma on some level. Once I recovered, the myeloma went back to a crawl. Diet, exercise and de-stressing are making a huge difference for me.

Which gives me quite a lot of hope for Car-T, since I won’t have any maintenance drugs to punch me down. The cancer will die and hopefully diet, exercise and de-stressing can help take care of the rest, or at least make whatever is left over myeloma’s life miserable.

Turmeric, green tea and broccoli for the win. I’ll go over more of that in my upcoming post, My Car-T Strategy.

P.S. I forgot to mention that the maybe/maybe not tumor on my spine hasn’t shown up physically inside or out, so I’m leaning towards it not being there.