Saturday, February 24, 2018

Friday, February 23, 2018

Cha Ching

What you are looking at is $14,000 which is the cost of one bag of darzalex.  Imagine if a myeloma patient couldn't get insurance because they were denied coverage due to a pre-existing condition or if their out of pocket cost was some huge number. This is one reason why the Affordable Care Act is so important. When I stopped working, I was allowed to keep my insurance provided I pay the entire premium. Not cheap, but definitely worth it.  Fortunately I am getting premium assistance from the Leukemia & Lymphoma Society and co-pay assistance from Janssen Oncology, the maker of darzalex, has a co-pay assistance program. Thank you LLS and Janssen.

Back At It

Recovered from flu. I had to skip two weeks of treatment.  I'm on maintenance, so I do darzalex once every four weeks. Missing two weeks means it's been 6 weeks since last infusion. But today I'm back it. We did labs earlier in the week and myeloma numbers look tremendous. Note I also take 1 mg of pomalyst for 21 days followed by 7 days off.  Again with rhe flu, it' s 3 weeks since last pomalyst.

Note that darlazex is infusion and pomalyst is oral. With darzalex once I hit my insurance out of pocket payment, I pay nothing. Pomalsyt, while it is chemo, is treated as any other prescription and doesn't count against my out of pocket budget.  So when folks discuss parity for oral chemo, this is what they are talking about.  Oral chemo is fucking expensive and can bankrupt folks.  I'm fortunate that a} I get copay assistance and b} I have good insurance that pays for the majority of my prescriptions costs. Nonetheless, it aint cheap.

Also, I got a call from my dermotolgist the other day, regarding the warts on my fingertips.  My immune system is fairly taxed and things like warts and skin cancers is a never ending fight.  We've tried several topicals to deal with the wart and they just keep coming on back. But the dermo read about a treatment that has been successful in keeping them away. I started this yesterday. I sit for two hours with a powerful ointment followed by 4 minutes under a powerful led light that activates the ointment. I'll do this monthly and see where it gets.  I did my first light treatment yesterday and for the following 48 hours I need to wear gloves when outside, otherwise the sun will reactivate the ointment and it will burn like heck.  After 48 hours I'll be good without gloves.

Obviously I'm back at it.

Wednesday, February 21, 2018

Spoiler Alert

A few years back there was Lost. A TV series about a group of plane crash survivors on a remote island. The show focused on their attempts to get off the island and their attempts to understand the island. I've been thinking about it lately as I sort out some crazy dreams I've had.

I've written previously how I was sick for a couple of months prior to being diagnosed. Fatigue, fevers, night sweats, anemia. It all came to a head when I went to Las Vegas for a friend's birthday.  I got so sick after only being there for a few hours (and not making a single bet). I had terrible chills, fever and was so damn tired. I went to bed in the afternoon and woke up the next morning feeling better. But I knew I needed to fly home asap. I'd been going to my primary care doctor for two months and we'd been testing for everything...except cancer for some reason. That morning in Vegas, walking through the casino to meet my friend for breakfast before I left, I had a powerful sensation that I was dying. It's hard to describe but it took over all my senses and seemed very real, very scary and very sad.  Within a couple days of returning home, I was hospitalized and within a week I was diagnosed with multiple myeloma.

A few months after being diagnosed, we were still trying to find a drug mix that worked.  During this time, I  was having nightly dreams of driving in the hills on dark rainy nights. I had a destination, but my stepfather was riding shotgun and kept throwing up obstacles to prevent me from getting to where I thought I needed to be. These dreams eventually went away as we got control over the myeloma. Note that my stepfather passed away over a decade ago.

Fast forward to today.  For the past nearly three weeks I've been battling the flu or cold or some kind of respiratory infection. I felt pretty horrible. I finally started feeling better a couple of days ago. I had to skip treatment twice while I was sick and I hate missing treatment. Luckily, now that I feel better, I'm on schedule for Darzalex this Friday.  I saw Dr Phan last week and told him what was going on and he reminded me that pneumonia or infection is often what gets myeloma patients.  This is something all myeloma patients are aware of.

I also told Phan about the crazy dreams I was having. The most vivid was one that woke me up at 2 AM during week 1 of the illness. I woke up, sat up in bed and I thought I was already dead and that my purpose moving forward was to get ok with my life; that I needed make my life and my legacy memorable.  I'm not catholic but it felt like what I imagine is purgatory.  I tried to write down as much of the dream as possible. It seemed so real and had so many moving parts. It seemed to fill in many gaps in my memory.  What's interesting is that I've accepted my  myeloma fate. well, I thought I was ok with it. But I think I say that when I'm doing great and can be in denial. But the sensation of being in purgatory left me feeling that I have some work to do. I need to add lasting meaning to my life. I need to clean up the past and solidify the future.

I'm reminded of my favorite boxer George Foreman, who, after a particularly difficult fight against Jimmy Young, in the locker room, claims to have visions that pushed him to a spiritual rebirth.

Phan thinks I may have been sepsis (I had to look up the definition) which can lead to hallucinations.  All I know is that two weeks after these dreams I'm still trying to sort it out. 

The good news is I'm feeling much better. Myeloma numbers look great. Creatinine is 2.03, easily the best it has been since I was diagnosed. WBC and platelets are up. Went back to the gym yesterday and off we go. 


I no longer work, but I did work for over 6 years while managing my disease. For a while, I had some real challenges with human resources. I...