7 years coming up in 11 days. When diagnosed I wasn't sure I would make it to one year, although at some point I made a mental note that I'd be happy to get to two. We had some real challenges finding a successful first line of treatment that first 12 months. When I hit two years, I changed the mental note to five years. I flew past that mark, although I did become refractory to my maintenance regimen six months after the 5 year mark. When that happened there were times I felt even worse than when I was first diagnosed. I switched to Darzalex and Pomalyst, which are kicking ass and I feel better than I have since probably 2010. So when I hit six years last year, it passed almost without notice.
May 2 will be 7 years since diagnosis. While I never made a new mental target for how long I will survive, the number seems way way out there now. But I gotta say 7 feels pretty good. That's getting to be a while.
I just read a book called The Kevin Show by Mary Pilon. It's a true story about an Olympic sailor, who is bi-polar. His disease manifests itself in such a way that he thinks he is the hero in a reality show and is being told what to do by an unseen director. His disease is called the Truman Show Delusion, a name given to the condition 20 years ago as a nod to a Jim Carey movie called The Truman Show. He takes every coincidence as proof he is on the show. The book mentioned something called the Cotard Delusion, a not very common form of being bi-polar where people think they are already dead and therefore have no regard for their physical and mental being. When I first read this I thought about my recent dream where I thought I was already dead and in purgatory. I wrote an half asleep list of what seemed like more than coincidences as proof. (Mott the Hoople's song Golden Age of Rock and Roll is prominent on my list) But in googling Cotard Delusion, I'm not even close to that disease. It's intense, scary and dangerous. I don't have it and that's a relief.
I had my monthly darzalex infusion today. Phan has new nurses and had a full house today, so it was a little longer infusion than normal. 6 hours. I watched The Truman Show today. I saw it when it first came out and liked it. But I really loved it in my second viewing. I recommend it.
Back to the 7 years. I'm planning a small 7 year outing for me and Leslie and a few friends. I'm pretty excited about the milestone and want to share the excitement.
Wednesday of this coming week I get my first IVIG infusion. It will be boost my immunoglobins which should help to find infections and viruses. Even my dermo thinks it could help with my warts. My IGG last week was 338, an improvement over the 250 last month, but still under the bar of 500 that insurance uses, so getting approval was no problem. I'll say this about Dr Phan's office, they've always taken care of me and worked with insurance and made sure I don't need to stress about certain things. I'm sure I'll take them some sort of food goodies on May 2.
On October 9 I'll be 57. That blows me away. I might participate in some kind of event to commemorate the milestone and perhaps turn it into a low key fund raiser for Berenson's non-profit. It's next in the rotation. I was thinking about an MMRF bike trip/fund raiser to Bryce and Zion. But it's a $5,000 target fund raising target and I'm not up for that big an effort. Besides, in March 2019. with Captain Terry from my Kilimanjaro team, I already know I'll be on his team for the LLS Big Climb which I've done twice before (pre and post myeloma diagnosis). So for that I'll make a fund raising push. I don't want to bug the crap of folks too much with dollar requests. Leslie and I and Gracie will take our road trip the canyons later this summer.
We've lowered my dex dosage over the years, so the insomnia isn't nearly as bad as it used to be, but it is still there, therefore this rambling blog post.
Friday, April 20, 2018
I've probably mentioned this before (I'm not even bothered anymore by repeating of statements...I've accepted chemo brain and getting older) But I've been listening to an awesome podcast called Ologies. The most recent topic was radiology. It's a really good listen for anyone who has undergone a host of diagnostics. Just click on the image.
Tuesday, April 17, 2018
Saturday, April 7, 2018
It's national beer day for what's it worth. I continue to inch towards 7. It's a cinch. I've asked a lot of folks, well three, who are on darzalex and get ivig. No one has heard that the ivig can impact darzalex efficacy. Berenson indicates anecdotally that the ivig can help the body fight myeloma. Makes sense given it's boosting the immune system. Phan so far is the only one who hasn't been all on board with the ivig. He does want me to check with my kidney doctor before I can do the ivig, which is about a 4 or 5 hour infusion. I have an appointment with Doc Froch the nephrologist on April 18. But I don't want to wait, so I'm going to figure it out on my own this weekend. Ideally I'd like to get ivig this week and then the week after I have darzalex. I'm getting tired of the low immune system. Yesterday I thought for a second I was getting another cold. Today, I don't think so. But another cold on the backs of the flu and cold over the past two months would have pissed me off and impacted my mental stability. But...the skin issues aren't going away and per the dermatologist, a boost in the immune system should help the skin. It's worth noting that in 2014 and 2016 I had miserable surgeries related to my immune system. It's 2018 so, we'll see how things go. I am checking in with that doctor this week to see how it all looks. Fingers crossed.
Gary Peterson is a fellow myleoma patient. He has a website that discusses myeloma survival rates; comparing doctors, hospitals, etc. It...
7 years coming up in 11 days. When diagnosed I wasn't sure I would make it to one year, although at some point I made a mental note tha...