Tag: for fun

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Megamind

Jothi

About 4 days after my start of the Dara/Pom/Dex regiment started I woke up in the morning feeling awful. Of course that was to be expected having just started chemo again.

I stumbled into the bathroom to wash my face because I thought I had a large amount of sleep in my eyes. Wash wash wash…..hmm this doesn’t seem to be helping. I turned off the water and looked in the mirror to see my head swollen. Oh, what fun! I can’t blink proper because my eyes are swollen.

We called up the infusion center because a swollen head was not on the list of side effects. They said they would talk it over with the pharmacy and get back to me. They called back a short while later and said “we can’t find a swollen head a reaction to any of the drugs”.

I always find it reassuring when the people who are giving you these drugs say “gee, I dunno”. They have me taking zyrtec prior to the Dara injections to stop a allergic reaction. “Just keep taking the zyrtec daily and hope it helps”. Well, it did end up helping (I think), either that or the drugs wore off. My head doesn’t swell anymore, but my face still gets red and puffy one a week. Clearly a reaction to the dex.

I was eating breakfast that morning and I told my kids I should shave my head and dye my skin blue because I feel like Megamind. They agreed it would be a good idea.

What do you think?

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The First Post

Jothi

Well, where to start? My name is Jothi (pronounced Joe-T). I’m married for 20+ years at this point, and we have 4 children aged 12-19. I am a big nature person. I love spending time outdoors, gardening, hiking, going to the beach, exploring. I am also a huge gamer. Games of any type, board games, sports (both playing and watching) and occasional video games.

People who I would like to sit down and have a long conversation with are in no particular order: Dalai Lama, Barack Obama, Warren Buffett, Anita Moorjani, Neil McKinney, Shin Terayama, Ryan Reynolds, Michael Jordan, John Stewart, Helen Jane Long and Steve Kerr.

For my myeloma family out there, I have Lambda Light chain myeloma. Which means I have too many lambda light chains that make up my blood for everyone else. I have the 14;16 translocation in my myeloma genetics, which basically means my myeloma is smarter than standard myeloma and is good at side stepping drugs.

I had 2 lesions when I was diagnosed, one on my 7 rib on my right side and a bigger one on the right side of my sacrum. Sometimes, I think about tumor placement in the body, and while there are worse spots than the sacrum, the sacrum is a terrible spot to have a tumor! I don’t recommend it. That’s the spot where your spinal cord fans out in a fantastic web of nerves. To this day, it’s like a little bird sitting on my shoulder poking me, saying, cancer, cancer, cancer.

I have had radiation on my sacrum and I went through the VRD chemo protocol (Velcade, Dex and revlimid). I elected not to do the stem cell transplant at that time. My lambda light chains at the high point were 470 and my Kapp/Lamb Fr was .01. M-band was 1.4.

About a month ago I started on Dara sq, Pom and Dex. As of last blood draw, my Lambda light chains are 142.52 Kappa Light chains 5.70 and KAPP/LAMB FR is .04. My M-band is 1.4. These numbers are after being off of all Chemo for over 6 months after I had a go with covid and saw that the chemo wasn’t doing anything anyhow.

I’ve had 2 pet scans this year, with the most recent in July. Both have come back showing no cancer activity.

I have become very passionate of diet, nutrition and what actual food is along my brief journey. When I was struggling for a website name, my kids suggested: Eatyourvegetablesdotcom, but it was already taken. But it is definitely my motto.

That’s the gritty numbers post with the information download. I hope my future posts will be a bit more fun and entertaining.

EAT YOUR VEGETABLES!!!