Tag: hiking

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The Waiting Game

Jothi

It’s been over 4 weeks since I had my T-cells collected. I find myself counting down the weeks, which I find a bit funny. Car-T has such great potential but can also have some nasty side effects. Maybe I’m just tired of dealing with cancer and would like to be done with it, or at least have a good long break from it.

My doctor was on vacation when my potential spine growth showed up in my heart MRI. That left me communicating with a nurse practitioner filling in for the doc. That was a bit of a challenge, having odd responses from her. Her choice of action was to wait for a month, when the team could review my scan in their monthly meeting.

Huh?!?

None of her suggestions made any sense to me, and I finally told her I wanted to talk with the myeloma doctor when he got back. It was funny timing because I was a few weeks into having my cells engineered. You have to be off treatment for about 3 weeks before the Car-T infusion. Did I want treatment for a week?

Fortunately, I feel like I have a very good myeloma doctor, and he called the day he got back and we discussed things. He said that things can show up on scans that aren’t actually there, and if there is something there, it’s so small, unless I have pain, just let the Car-T deal with it. He recommended not doing anything, which sounded good since I am not in pain.

For the most part I feel pretty good. I find myself wondering when I have a weird jab of pain. Is it cancer? Or is it just a weird jab of muscular pain?

It’s been about 3 months since my last infusion of chemo, and apparently it already wasn’t working at that point.

I am starting to notice little cancer clues for myself. When my cancer numbers went up recently, some of my hair started falling out. My hair started failing out over 5 years ago, before I was first diagnosed. So I think it’s a sign for me. In the last week, at times, I have been hit with some pretty good waves of fatigue and occasionally aren’t as hungry as I should be. I haven’t had a myeloma blood test in 6 weeks. I wonder how my numbers are?

I know potentially, I might get hammered by the Car-T. I think it’s a fine line between having too many cancer cells, and have the T cells go berserk, and not enough and the cells not activate efficiently.

I’m not letting any of it hold me down, it will be whatever it will be and I’ll get through it. I’m still staying active, walking, running, hiking and weightlifting. I’m still pounding nutrition. I find that eating whole real food is easy to eat, and I want to build myself up as much as possible before the Car-T gauntlet.

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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.

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Plus 23

Jothi

Hello, I finally feel like writing again. I’m at +23 on my stem cell transplant today. It has been an interesting past month to say the least. I’m still in recovery mode, and I’m told I will be this way for a few months at least.

The doctor told me that I did better than most. The end result is all that matters though, how much cancer is left or not left. I would rather be more miserable for longer and have a better response. I won’t know that answer for a few more months. I’m praying for MRD negative test result (zero cancer cells in a million).

I did get an engraftment fever, which wasn’t a surprise to me, since fevers are kind of my thing and I usually get them when I’m sick. Fortunately, I was able to stay out of the hospital from that.

Where my picc line went into my arm, that started to bleed one day, which was alarming because my platelets were so low. They put a plastic dressing over the line to hold it in place and keep germs out. It filled up with blood and I had a sack of blood hanging from my bicep. Fortunately, my measly number of platelets stopped the bleeding and the dressing just got changed.

The nausea was pretty challenging. Not surprising, since the chemo heftily kills off GI tract cells as well. I was only able to eat a third of what I normally eat, and that was forcing myself to eat. I managed it with ginger tea and drugs. I was told I could drink fresh vegetable juice if I made it myself (which I do anyhow). I feel like that helped my nutrition immensely, and kept my remaining blood cells alive and kept me away from transfusion.

I engrafted (my blood started growing again) on day +10. To my surprise, I was told I could go home on day +13 (I had to move into hospital apartments across the street from the ER, since I lived outside the “safe zone”). I didn’t need a red blood transfusion and I only needed one platelet transfusion.

My hair fell out as expected. I wear a beanie to keep my head warm. When I look into the mirror, I think I look like Toad from Mario brothers. Oh well, good thing it’s not permanent.

There was a park that was in walking range of the Stanford apartment that we walked to every day. There were some amazing oak trees there. Their branches went out horizontally for 20-30 feet from the trunk. I was amazed they didn’t snap off. Oak wood sure is hard.

One of the oak trees. I had a friend tell me I look like a ninja all covered up 😜.

I’m pretty tired all the time. Go to bed tired. Wake up tired. Tired from doing the smallest things. It’s getting old already. I’m the type of person who does things pretty constantly. I have a whole list of things I’m not allowed to do (due to germ, bacteria and mold risks), and it’s hard to get inspired to do things from what I am allowed to do. I don’t golf, but I’m not allowed to golf for 6 months, I think that one is pretty weird 🤪.

I got the picc line pulled out a few days ago, and today I’m allowed to use my right arm again. Even though I’m tired, I’m really looking forward to exercising again. I have been keeping up on my walking, about a mile every day. Call me crazy, but I did an almost 4-mile flattish hike the other day. I really needed to get out into nature. It makes me feel alive and quite frankly, sometimes I feel half dead these days at times.

Well I’m off to the exercise bike, hopefully I don’t collapse from it 🥴. Again, the only way is forward and I’ll keep on trucking….

Eat your vegetables!

It’s California poppy season and boy are they ever blooming after all the winter rain.
Blog

Joaquin Miller Park

Jothi

We went hiking the other day in Joaquin Miller Park in the Oakland hills. We had been there before, but the park is so large, we decided to go to another entrance, which ended up being a completely different experience due to the park’s size.

We have a big rainstorm hitting California at the moment, but we managed to get a hike in, in between the rain. The Bay Area fog did roll in though, which made it really COLD. Now, I do realize that it wasn’t actually cold compared to other places, but sitting around having a picnic before the hike at 39 degrees felt pretty frosty 🥶.

While hiking, we stumbled upon some reddish orange mushrooms that were pretty cool. There is nothing like moisture and decaying plant matter to spawn mushrooms! I think they are Red Russula mushrooms, but I’m definitely not a mushroom expert. Probably quite poisonous, judging by that they were still there and not collected by someone already. Apparently most red mushrooms are poisonous. We also came across some version of turkey tail mushrooms, which are always cool to see.

Hiking in the foggy redwoods was also a pretty awesome experience. I think redwoods are my favorite kind of tree, with Japanese maples being my second. Redwood trees are definitely an entity and walking in between them, you can feel their presence. These redwoods are second or third generation, as the first was logged for building materials for San Francisco over 100 years ago. So they are big, but not that big when it comes to redwoods.

There is a small grove of untouched redwoods at Henry Cowell State park in the Santa Cruz mountains. There is a tree there that is about 277 feet tall and around 1,500 years old. Can you imagine, with this being the year 2023, this tree started growing in the year 500? Just to give you an idea how large it is, it’s so wide, that it takes 16 adults hand to hand to hug the tree. And this one is still not as big as the trees near Yosemite or in Humboldt up north. They are quite something to see in person. Thinking about my previous post on gifts, these trees are a gift by just being.

And of course, Yukon thought it was the best day ever, that boy loves to hike 😊.