Author: Jothi

Blog, labs

It’s Been Awhile

Jothi

Looks like I haven’t written anything for awhile. For no particular reason; I guess I just haven’t felt inspired. Hmm…. I wonder what has happened recently in my myeloma world.

I had a bone marrow biopsy (maybe in January?) to check my MRD status. I went up to 27 myeloma cells in a million. That was from about 1 in a million. So that was a bummer to see. MRD is pretty cutting edge. Nothing showed up on my blood tests, although the following round of blood tests showed my m-band moved to “detectable but not quantifiable”. BLAH, it would have been nice to hit MRD zero and stay there.

My oncologist didn’t want to make any changes based on MRD as most oncologist would follow. The myeloma specialist then spoke to the oncologist and then had a meeting with me to talk things over. He said that the numbers were not trending in the right direction, and what was the point of waiting until things significantly elevated. The specialist said he went through the list of drugs and wanted to add in a drug that “wasn’t going to do me harm”. He recommended adding back in Dara to punch the numbers back down.

I was on Dara prior to transplant, but Stanford stopped it because it was not working fast enough. Since it didn’t seem to give me any problems, I agreed to go back on it. If he was recommending something like cytoxan, I would have said no.

Well, as it turns out, side effects can change post transplant. I had my first dose of Dara with carfilzomib and it was rough. I turned into a 90-year old, with super fatigue. My skin on my torso also went hypersensitive and wearing a shirt was unpleasant. Too bad we were still in winter ❄️. That lasted for about a week. I had another round two weeks after the first, and the same thing happened again. The oncologist was baffled. We ran some blood tests, but nothing showed up. I’ve noticed that if something is out of the ordinary and not listed on a clinical trial, the oncologist is left bumbling his bottom lip and saying, “Good luck with that”.

Fortunately for me, by the third dose, my body was getting used to the drug and the symptoms significantly lessened. I didn’t have any of those symptoms by the fourth dose. So I’m back to being left with the few days of being miserable from the carfilzomib side effects. Maybe the cancer gods will show me some favor and things will get good enough to eventually drop the carfilzomib and just stay on the Dara.

But then again, at this point, I’m pretty sure the cancer gods don’t like me very much 😜. But then again again, they just updated all the five year cancer survival rates, and myeloma is now 59%. I’m going to hit 5 years soon. Not that I attribute that to the cancer gods, I’ll take the credit with my efforts.

I guess the other thing physically that happened was that, I developed a frozen shoulder. Possibly from the chemo, they aren’t actually sure what causes them. It’s quite bizarre. I can’t raise my right hand or arm above shoulder height or move it in an outward direction. I guess the tissue surrounding the “ball” of your arm, that goes into your socket, just seizes up. It can take 8 months to 2 years to “unfreeze”. Fortunately, it looks like I’m going through the stages at the faster rate. I’m sure the infrared sauna and turmeric are helping. Too bad my muscles didn’t freeze in a better spot 💪🏼. Imagine having your six pack be frozen and being ripped for 2 years.

Let’s see, I guess I have some blood numbers to share, here you go.

My medical provider made it a pain for me to transfer over my data, so that’s why I don’t post much about it (plus, I don’t have blood run much these days). Because of my weird side effects from the Dara, they did run a whole metabolic panel. My red blood cell numbers are still low. From the metabolic panel, they ran iron.

As you can see, my iron is quite well, from all those goji berries and beets. So my poor red blood cells are just quite beat up from the chemo. I thought that was interesting to see.

Well, I can tell your attention span is beginning to wane by this part of the post so I’ll be quick with the rest.

I made it to a succulent nursery, “Succulent Gardens”, down by Monterey, that I always wanted to go to. That was pretty awesome to visit. I’m a huge succulent fan, as you may have noticed from the pictures on my website. They supply plants to a lot of the other nurseries in California, so I was cool to visit the source. Here are some pictures.

I took a mushroom propagating class at a local collage. I sort of knew how to grow mushrooms from books and the internet, but I wanted some hands on training. So I know how to do that now. I have mushrooms growing inside the kitchen cupboards now. Hopefully at some point I’ll have a bigger space to really get into it.

Preparing mushroom growing media.

Finally, spring has sprung. Here are my irises that I planted last year. They had a year to grow and be undisturbed, so they are happy. Yukon likes to eat the grass around the pot.

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My Hidden Superpower

Jothi

I was walking my dog Yukon the other day. We go for a walk every day, for my benefit and his. Most days, Yukon needs to have a bowel movement along the way, much to my chagrin. But hey, it’s part of nature, and I’ve let go of my timing preferences.

His perfect moment for this day was way at the other end of our street, in front of a deaf guy’s house. Yukon was doing his business, not in the guy’s yard but in front. Suddenly, the door flies open, and the guy starts yelling at me in a way that I couldn’t understand, since he was deaf. But it was pretty easy to tell he was not happy about Yukon’s choice.

“I’m cleaning it up” I said.

He kept yelling, not hearing what I said. Obviously, out of habit I spoke, since I don’t have much experience communicating with a deaf person.

I showed him the dog poop bags, he understood that, waved and slammed his door.

Now, I’ve never left a mess behind, anytime or anywhere, from my dog. I hate stepping in dog poo and it’s a lame move to let your dog poop in someone’s yard and leave it. His reaction would have been fully justified in my mind if that’s what I did. But I didn’t. He must have been having a bad day and this was the last straw.

Lucky me, it’s not like I can control my dog’s bowel movements. OR CAN I??? It’s something that I’ve wished for more than a couple of times.

REALLY?!?!

You are going here?

I have to carry this now for 2.5 miles, back to a garbage can!?!

It would be a super handy, but super lame super power.

Recently, I was standing in a circle in my superhero group. You see, an Alien race was starting to invade, and it looked like the end for humanity. We were its last hope.

“Let’s review everyone’s powers before we head out” Colossal man said.

“I have super strength and speed” one said.

“I can teleport” said another.

“I don’t have a superpower, but I’m really rich and can make gadgets” said the third.

“I can create and control fire” chimed another.

It was my turn and everyone turned to me.

“I can control my dog’s bowel movements”, I said.

Invincible Woman turned to me and said, “I’m so jealous of your power.”

“I know right, it’s pretty awesome” I replied. 😜

Oh well….. I guess I can cross off getting scolded by a deaf man off my bucket list.

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Fernando

Jothi

I was cooking lunch today, and the song “Sweet Child o’ Mine” came on. That song has one of the most epic openings of all time; you can’t help but play your air guitar. But it made me think of my friend Fernando.

We weren’t best friends or anything. We spent countless hours at work together, even though we worked for separate companies. Spending a lot of time with “the guys” somehow creates a brotherly feeling.

Fernando loved rock and roll. I remember him always going to concerts and wearing various rock and roll band t-shirts. He had a loud, rich projecting laugh. He loved hummus and celery and would tell me excitedly what flavors of hummus were his favorites. His dream vehicle was a Chevy Silverado. He was so happy the day he drove up after he was able to buy one.

I remember one job. It was my job to completely redo the electrical system of one of the famous “Painted Ladies” houses in San Francisco. The job was near the end. I had taken off my work shoes in the garage, to go inside so I wouldn’t scratch the new floors, to go up to the 4th floor to do some testing.

Fernando thought it would be funny and a good joke to take a roll of blue painters tape and go around and around my shoes with tape, until they were a blob of blue tape.

One of his co-workers called up the stairs in an urgent voice for me to come down.

Unfortunately for Fernando, his boss and the architect made a surprise visit, and they wanted to go over some things with me in the garage.

I got to the bottom of the stairs to see Fernando’s face, stressing out, panicking, and trying to take all the tape off my shoes, worried he was going to get into trouble with his boss. I had a good laugh at his prank backfiring. He wasn’t going to get it off in time, so I just kept walking into the garage in my socks. Fortunately, most people just don’t look at other people’s feet, and his boss and the architect didn’t notice. He had such a face of relief afterward, and we all had a good laugh.

A few months after my cancer diagnosis, about five years ago now, I got a text from a gossipy co-worker. I had gone through radiation and was doing induction chemotherapy (VRD). I was not working and was trying to get my head straight again.

“Did you hear about Fernando?” He asked.

“No, what’s up with Fernando?” I replied.

I was standing out in the backyard, in my garden, and there was no reply. “Well, thanks,” I thought to myself. You can’t just say something like that and ghost a person.

I’m also friends with Fernando’s boss. I called him up.

“What’s going on with Fernando?”

“I was trying to keep this from you” he replied.

“WHAT!?!?!” I said impatiently, getting nervous.

Fernando’s boss is 6 feet tall, gruff, hairy as all get out, an ex-football player, has a good beard as well a gigantic belly, and looks like he should be driving around on a Harley.

He burst out crying.

“Fernando killed himself a few days ago.”

“Oh God,” with tears forming in the corners of my eyes.

I was in shock. I know we kept talking on the phone, but the conversation has been wiped out of my head. I just remember the crying. My work brother was gone…..

We go through our lives creating a network of strings, of connections with people we come across. People who become part of our beings. When people disappear from our strings, there are holes.

You don’t understand what role you hold for other people, but it’s more than you think. It’s something that I think of occasionally, between my pre and cancer life. Sometimes I already feel like just a memory to my pre-cancer relationships. What things will I be remembered for?

For the record, I love hummus and celery as well.

Sweet Friend o’ Mine, Fernando.

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How To Rub Your Kidneys

Jothi

This post probably should be called Why Should I Rub My Kidneys? But knowing how to, probably more specifically, where they are to rub, is more important.

Known as “The Root of Life” in Chinese Medicine. They act like batteries for Qi, or energy, for your body. I like to get up in the morning, have a big glass of warm water, and rub my kidneys to charge them up for the day. Your kidneys filter the toxins and waste from your body, and you get rid of that via a direct connection between your kidneys and bladder.

In TCM, the kidneys are also responsible for the production of bone marrow, which governs your bones, brain, spinal cord and obviously your marrow. So anyone with myeloma, blood or bone issues should take extra care of their kidneys. Renal failure or kidney failure is one of the main ways people with myeloma die, getting plugged up with all those extra light chains. These guys are very important to keep running well for everyone, especially people with cancer.

If you don’t believe any of this or none of this makes sense to you, who doesn’t like a good back rub? It just feels good, and you can do it anytime and while doing other things. I rub my kidneys while I cook, because there is a lot of little snippets of time in between things. Rubbing them, while standing and having a chat with a friend is also a good time. If you are too sick to do it, you can get help or get a little electric massager to do the job.

So, where are your kidneys located for a good rub?

All you have to do is find the bottom of your ribs on your back. Your kidneys are a little under your ribs at the top, and the rest are exposed right under, on either side of your spine.

In this picture, my hands are right up against the bottom of my ribs, so that’s the level for my kidney massage.

There are also two thin tubes of called ureters that run between your kidneys and bladder. I also like to rub from my waist to my kidneys to get those a bit of a massage as well.

The actual kidney massage should be whatever feels good for you and your body type. You can go clockwise, counterclockwise, back and forth, and up and down.

Using a closed fist versus open hands will change the feeling as well.

In this video, I’m using the Qi Gong method of massage, using the acupuncture point, Large Intestine 4, or the Great Eliminator, on my kidneys. If you make a V with your pointer finger and thumb, the spot is at the bottom of the V. (LI-4 is also a good spot to rub in general or if you are going through some constipation)

I do find it interesting, as I’m currently going through carfilzomib. I can feel my kidneys working hard a few hours after the infusion, especially when my urine turns a putrid color. I can feel that my left kidney is having a harder time with things than my right. I make sure to drink lots of fluids and rub, rub, rub especially on the left.

It’s a minimal commitment to do and another simple tool to put into your well-being toolbox. Give it a try!

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An Audience For My Buns

Jothi

I haven’t been inspired to write much as of late, as you can tell by my lack of posts. I was just more interested in doing other things.

Not much is new. Still doing maintenance carfilzomib chemo every two weeks. I still get high fevers from it every time. I’m into the 103 degrees now, so it’s been a challenge. I’m signed up for the flu every two weeks. Blah.

I went out to San Francisco a few weeks ago to visit my brother. We went for a hike at Land’s End, which I had never been to before. It was a cloudy day, but it was still scenic. It was pretty crowded, since a lot of people were off from work because of the holidays.

We hiked down to the ocean, and I found a big rock to climb up onto that part of it was in the water. I sat down to watch the ocean. California was having a storm coming in, which made the waves quite large. It was very satisfying watching the waves come in, break cleanly, and then smash into the rocks.

I’m always amazed by the power of the ocean. I’m also equally amazed, how rows of rocks in the ocean can dissipate that power. Waves that seem to be coming to run you over and churn you into dust, just dissipate into nothing. It’s fun to watch.

My view from the rock

I had a bone marrow biopsy the other day. I agreed to it 6 months ago. The myeloma specialist wanted to check on things, more specifically, he wanted to check my MRD status. Last time, I had 3 myeloma cells in 2.6 million.

Coming up to the biopsy, I was wondering why I choose to have it done. If it’s MRD zero (zero cells in a million), which would be awesome or if it showed 100 myeloma cells in a million, I’m not sure what would change much currently.

I suppose I would get a mental boost if it was zero, but what if it was worse? Would I feel dragged down? What am I going to gain from this? I feel pretty level-headed about it all, no matter what the result is, but those were my thoughts leading up to it. Anyhow, I just decided to go ahead and do it, because the specialist thought it was important. He probably knows more about myeloma than I do 😜. Maybe he will share with me his thoughts sometime. My regular oncologist was against it (mostly because of the cost for the hospital), but I twisted his arm (go figure, twisting an arm to have my marrow sucked out).

They take the bone and the marrow out of the iliac crest. I had them take it from my left side, because that’s where I had it done last time, and MRD can vary from location to location.

So I hopped up on the procedure table, face down. The nurse then came up and pulled down my pants to expose my butt. Then she tucked in some disposable cloths to my pants to contain the blood.

I’m lying there with my buns just hanging out. Minute after minute pass, and the nurse finally says, I’m going to find out where the guy is who is going to do the procedure. She flies the door open to the busy hallway and disappears.

“Don’t mind me, I’m just airing out my buns”.

She comes back after a few minutes and says he is at the hospital next door and will be here shortly.

Five minutes later, he comes in and says hello, and says he brought a friend to come and watch (he really said, can I have my student in here to observe?).

In my head I say, “sure, I’m lying here exposed, let’s get a bunch of people in here”.

Now, it’s a good thing I don’t actually care. I gave up caring about people seeing my butt awhile ago.

They numb me up as much as possible and start getting to work with the core needle, a needle so strong and sharp it cuts bone. Eventually they get through the bone and have access to my marrow.

There is no numbing of the marrow, so it’s the most painful part of the procedure. The nurse came over and gave me a back rub while they pulled it out this time. Which didn’t make any difference, but it was a nice gesture.

Afterwards, I was chuckling to myself. I was laying on a small table with my butt exhibited, with three people surrounding me, like I was on a stage doing a performance. The things people do for entertainment these days….

Anyhow, that’s my (hopefully entertaining) story, we will see what the marrow numbers are in a few weeks.