Tag: fever

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“I Don’t Know”

Jothi

Wow, it’s been about a week since I wrote something. I feel like sleeping most of the time. I was warned about the extreme fatigue that comes with this, but this is a whole other level compared to other fatigue I’ve gone through.

I ended up getting the boot from the hospital a few hours after I wrote my last post. The doctor came in and did a complete 180 from what he said the day before. I think when it came down to it, they needed the room for someone else, and me staying was messing up someone’s schedule. The early test results said I didn’t have an infection, which was confirmed days later. My fever was caused by the CRS.

When they decided to give me the boot from the hospital, I mean they really did give me the boot. They pulled out my picc line, gave me a shot of Neupogen to boost my white blood cells, and had a wheelchair ride to the curb waiting. The doctor said a nurse practitioner was going to come by and answer all my questions, but one wasn’t available, so that didn’t happen. I was a bit ticked off with the lack of information as I was suddenly being shown the door. Overall the hospital stay and staff were good, except for the end.

I didn’t mind going home, as a hospital is not a place of rest or recovery. It’s a place to make sure you don’t die, although that happened quite a bit while I was there. 4 people dying in one day was my record while I was there.

I was talking with one of the nurses while I was there, and he was wishing they didn’t announce it on a loudspeaker on all floors. He found it disturbing and he wasn’t the one hospitalized. I didn’t mind knowing. It was a good reminder that death is part of life and it happens all the time, unknowingly to most people.

So I’ve been home for about a week now. I’ve been pouring in the nutrition, giving my body what it needs to recover. I had a check up on Monday, with labs showing my recovery. I have another check tomorrow, where I think we will run some myeloma labs, to start seeing how the treatment is going.

I’ve had two little bouts of confusion when I wake up in the middle of the night. I’m also having some weird nerve discomfort/pain down the backs of my arms and legs. That’s going in the “I don’t know” category for the doctors, but fortunately it is gradually getting better on its own.

I think that’s it for now.

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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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We Are Doing This Right Now!

Jothi

I had my first infusion of maintenance carfilzomib and pills of cytoxan the other day. I had them both prior to my transplant, so my body has prior experience with them (or so I thought), so I didn’t think it was going to be much of a deal. I was a bit tired, so I went to bed a little early that evening.

I got into bed and tried to get comfy. My wife came to bed about an hour later. I was still awake and asked for the thermometer since I was feeling a bit cold. We are going through a heat wave and it was 95 degrees outside, and we don’t have an AC, so it was a little unusual.

98.9 was the reading.

I laid there for a bit longer, pulling up the sheet to my neck. I was starting to shake a bit. I got a fever when I first started carfilzomib and cytoxan months ago, so I guessed I was going through it again since it had been awhile.

99.8 at the next check.

I was really starting to shake, so we added another blanket. Time went by, and I added the comforter. I had all my winter blankets on and it was still quite hot outside. I took a tylenol trying to get my shaking to knock it off, so I could sleep.

102.6 the thermometer read a little while later.

Everyone who has been on chemotherapy knows 101.4 is that magic number when you call the on call nurse and most likely head to the ER. I didn’t want to call, since I had been through this before with these drugs and talked about it with the oncologist last time. I knew they would have dragged me down t the ER to get checked. They (and I as well) are very concerned about infections, but I knew this was just a chemo reaction.

Phase 2 of my reaction was about to begin.

I feel like a lot of people have conversations with themselves when throwing up is involved. Sometimes the buildup lasts for quite a while. “I don’t want to throw up, maybe if I lay this way or that way, I won’t puke.” I didn’t have any buildup or warning.

For a bit of dramatic effect, I’ll narrate the conversation between my body and head.

“Jothi! Get up right now!

“Why?”

“We are going to throw up right now!”

“Really? I don’t really feel nauseous.”

“We are doing this right now! Make a run for it.”

I went to the bathroom and almost immediately threw up. I found it very funny and ironic. I didn’t throw up at all during my transplant or at all during any of my previous times on full strength chemo, and I puked with “maintenance”. Go figure.

I got back into bed and started to shiver again. In hindsight, that probably was not a good omen for my stomach and esophagus. Half an hour later, I asked my wife for a zofran to try and settle things down. Twenty seconds later, my body said:

“Let’s do this again.”

“Are you serious!? We just did that!”

I just got into the bathroom again, and out came the remainder, and it felt like my intestines and liver as well. I got back into bed, with my shakes gone now, and promptly fell asleep for the rest of the night.

My saint of a wife volunteered to dispose of my two rounds of half digested dinner. I only made it to the garbage can both times, so it was very kind of her.

When I woke up in the morning, I didn’t have any fever or vomiting. I spent the day replenishing my fluids.

It’s only been about 4 months since I was on carfilzomib and cytoxan, but I forgot all my do’s and don’ts for those drugs. Maybe I should write a post on it, so I can read it.

But jeez, my torso was sore! I haven’t thrown up at all, probably in nine years. I guess you must have special puking muscles, and mine weren’t at all developed. I wonder if they have a work-out for that?

“For the low low price of $19.99, you can get our puking muscle training program. Strengthen your back muscles, side muscles and abdomen. We guarantee you can puke 5 times in a row without getting sore, or your money back!”