Saturday, April 21, 2018

T minus 11 Days

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

Radiology on Ologies Podcast

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.

 Radiology

Tuesday, April 17, 2018

Stand Up To Cancer takes on Multiple Myeloma

I haven't talked about Stand Up To Cancer.  They're about information sharing as a way of curing and treating cancer. They just announced an effort aimed at Myeloma.  Take a looksee...

Stand Up To Cancer takes on Multiple Myeloma

Saturday, April 7, 2018

3 Beers In

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.

Friday, March 23, 2018

Inching Towards Seven

In less than two months it will be seven years since my myeloma diagnosis. That means that more than 12% of my life has been spent with myeloma.

To paraphrase Bob Dylan and totally changing the context: Yesterday went too fast and today is going too slow.  February flew by and this week dragged on and on. I wrote about my bout with the flu and my strong sense one night that I may already be dead, as I discussed in a previous post.  Honestly, I'm still not certain that I'm not currently in purgatory and sorting through my life.

Right now, I'm siting here on a Friday getting my monthly darzalex infusion.  It's my first chance to actually relax, write, listen to music, think and nap.  Monday I was at the LLS office doing my volunteer work supporting their First Connection program...a peer to peer program that connects newly diagnosed blood cancer patients with a veteran of the same cancer.

Tuesday I was at Berenson. Everything there is great, darzalex continues to work its magic. Getting there is a huge pain. 30 miles each way, which takes a minimum hour and half.  My numbers are fantastic and kidney function is great.  At Berenson I give research blood in support of the work he does with his non-profit The Institute of Myeloma and Bone Cancer Research.  My next fund raising activity, yet to be determined, will be for them. Poke Number One. Thank goodness for my port, I was poked 4 total times this week and my veins would never be able to handle this. A couple of weeks ago I was having horrible night time pain where the tube from my port dives over my clavicle. It seemed as if scar tissue had built up that was causing me the pain. I was scheduled to have the port replaced in a new site. But the pain started to lessen and I cancelled the appointment, not wanting to undergo yet another procedure, albeit a simple one.  Eventually the pain went away. Turns out it was scar tissue from my previous port and it was breaking up.

Wednesday I saw Dr Phan as is protocol before I do infusion.. However I did my labs two weeks ago, too early..trying to outsmart the fuck ups and delays of Labcorp.  But it was too soon, so Phan wanted me to do another blood draw. He also wanted to check my IGG which is a representation of my immune system. Like many darzalex patients, I've been getting a lot of colds.  To remedy this, folks get an IVIG; intravenous immunoglobin. If your IGG is under 500, then IVIG is approvable by insurance. While Berenson thinks IVIG would be perfect for me and anecdotal studies indicate it may help keep myeloma at bay. Makes sense to me, it is boosting my immune system after all. Phan, though, is a little hesitant. He thinks it may bind to darzalex reducing the immunotherapy's effectiveness. He worries too it might tax my kidneys. He wants me to get another ok from Dr B and my kidney doctor before we do the IVIG. It's a monthly infusion that lasts 4-5 hours and cannot be done the same day as darzalez. Most recent IGG labs are at 265.

I did my blood draw at Phan's office from my port, Poke #2, and took my 2 tubes to mother fucking labcorp.  CBC and CMP (basic blood info) were stat and the IGG wasn't stat.  The tech at labcorp said I needed another tube. I've been doing this long enough to know there is plenty of blood to run the required tests using what I provided. But she wouldn't budge and said I needed blood from a distinct tube. I had a fit, my first good fit in a while. I was pissed. They offered to draw my blood there, but the problem is my right arm veins don't work and on my left arm a fistula usually precludes blood draw. The fistula is there for dialysis and has never been used,  and doesn't even work any more (no more party tricks with my super vein). In special circumstances I can draw blood from the left arm. But I know the lab techs at labcorp aren't the most gentle and I'd end up with a massive bruise on my left arm. I'm always low on platelets and taking a daily aspirin so I bleed and bruise very easily. I didn't want a bruise on my arms..knowing that seeing a giant black and blue mark on my arm wouldn't be good for my tender psyche. So I passed on having them draw blood.

Thus I had to return to Phan's on Thursday for Poke #3 to get the new tube for the IGG test. Back at labcorp, the techs sat there smugly feeling like they won this small battle. Fucking assholes. I'm switching labs ASAP.  Options are Quest or some small lab. We'll figure it out.

A couple of weeks ago, I was at the LLS annual Blood Cancer Conference. I ran in to an old work acquaintance who spotted me. He was with his wife who works at Cancer Support Community in Redondo Beach. It's an amazing facility, offering, for free, a wide wide range of services and amenities to cancer patients. I had looked in to them years ago, when I realized I needed help with my fitness. At the time, I was still working, and the drive to their facility would have been too burdensome.  But meeting the old work acquaintance and his wife turned out to be serendipitous. She needs volunteers. I visited the facility on Wednesday and was totally impressed and blown away by what they offer. In the near future, I'll be volunteering there and taking advantage of their offerings.

Thursday I was had a dermatologist appointment. We trying a new treatment on my fingers to get rid of the warts. My crap immune system allows them to flourish and it really sucks. This was my second treatment. Basically we zap and burn and use topical appointment to get rid of them. It's a nearly three hour process, with the last five minutes being painful. I wrote about this recently. It seems to be working and in a month we'll do treatment 3 and hopefully the last.

As I indicated earlier, today I am at Phan's office for my five hour infusion. It's pretty darn relaxing, I must say.

T minus 11 Days

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...