Monday, June 25, 2018

Shout Out to Caregivers


https://www.whatnext.com/blog/posts/the-complicated-life-of-being-the-caregiver

The Saga of my Fingers Continues

I earnestly debated whether to continue poisoning my fingers with the painful beetle juice to once and for all get rid of the pesky warts. My pilot finger looks pretty darn good. So we decided to keep moving forward. We're doing my thumb and touching up the pilot finger. Those will be healed in a couple of weeks and at that time we'll do two more fingers, That should take care of the worst of it.  I'll tell you what...the pain and tenderness has really been something. Today they're feeling better and the rejuvenation begins.  Fingers crossed this keeps on working.




Tweeting Oncologist Draws Ire And Admiration For Calling Out Hype

Here's an interesting interview from NPR.


Saturday, June 9, 2018

Saga of my fingers

Check out this nice smooth finger with the beautiful new skin.  Looks like we achieved painful success. I'll do a couple more fingers soon.  I finally looked up what we're using, it's called Cantharidin. Yikes!!!   From Wikipedia:
Cantharidin is an odorless, colorless fatty substance of the terpenoid class, which is secreted by many species of blister beetles.[1] It is a burn agent or a poison in large doses, but preparations containing it were historically used as aphrodisiacs. In its natural form, cantharidin is secreted by the male blister beetle and given to the female as a copulatory gift during mating. Afterwards, the female beetle covers her eggs with it as a defense against predators.

Poisoning from cantharidin is a significant veterinary concern, especially in horses, but it can also be poisonous to humans if taken internally (where the source is usually experimental self-exposure). Externally, cantharidin is a potent vesicant (blistering agent), exposure to which can cause severe chemical burns. Properly dosed and applied, the same properties have also been used therapeutically, for instance for treatment of skin conditions such as molluscum contagiosum infection of the skin.
Cantharidin is classified as an extremely hazardous substance in the United States and is subject to strict reporting requirements by facilities that produce, store, or use it in significant quantities.


A New First

There's a myeloma patient named Rich. He maintains a blog smartly named richvsmm, He was diagnosed in 2013 and is currently in a Car T trial and is doing an amazing job with documenting his journey, both medically and personally. He lays it all out there. I highly recommend giving his blog a read. He is also on twitter at @richvsmm  He lives in Colorado, Denver I believe, not far from my brother and sister in law and now my mom, who recently moved to Colorado from Berkeley. Rich's writing is great and I really appreciate his openness.

I think in the 7 years of this blog, I go through stages of how much I share. Talking about the nuts and bolts of my health is fairly easy. It's the personal stuff that causes me some angst. Earlier in this process, when I was feeling like crap and uncertain of my fate, I'd be a little less cautious with what I shared. Occasionally someone at work or a friend would mention something I wrote and I'd feel a bit sheepish. And of course, family would get worried. More recently I keep threatening to shut this blog down, because I felt like I have nothing new to say. We, coincidently, reflects my personality in general of late.

Since stopping work (I'm trying to get away from saying retired, because while I did retire, I in fact stopped working to focus on my health. I couldn't keep up the pace.) I've been doing a whole lot of taking stock of me and life and what's important.  For instance, it hit me that I miss the family. I'm not always the most communicative person and also have a tendency to withdraw or go in the opposite direction when the going gets tough. Run Forest run.  I've gotten better, it's a challenging process to not fall back on old habits (but then again maybe I miss the old habits and the old Matt). As I told my brother recently, for six and half years we were in a pretty reactionary mode. Treatment, doctors and staying employed were all I had energy for. Being tired 24/7 was the norm. There was no time to reflect. No time or energy to think about things.  Now that I have the time and energy to reflect, I halfway wonder if the other way was better. All this reflection is a strain on my brain and make me a much less fun and social person. I don't necessarily have a lot of old friends any more. I used to. My Jewish guilt has me thinking I needed to be a better friend. Plus let's not forget cancer can be isolating, especially after several years. Note that I am searching for a new therapist. I did tell my previous therapist that perhaps I need an apology tour.

In a post from long ago I wrote about my concern with, in the future, being identified only as a cancer patient. The future is now. Most of the people I talk to or things I do are cancer related. That's not a bad thing, I've made some absolutely amazing friends in the past seven years. There's a real commonality between myeloma patients...obviously.  But I do need to branch out, learn, take a class, get creative, something. My self confidence is low. My memory sucks. I'm letting my hair grow, but as I told Leslie the other day, I might need to cut it, because I worry it's looking like I gave up. When I was diagnosed I was around 195 pounds. A couple of years ago I ballooned to 215. I've gotten back down to 190. Not bad, right? Except I have a lot less muscle mass than I did before I was diagnosed so I feel and look chunky. As a former fat kid, this plays on my psyche. I probably need to get to 180 or 175. It's tough. Taking about 40 mg of steroids a week makes one real hungry (and cranky). I went on a long bike ride yesterday and I felt pretty out of shape. Then last night I had a dream that I was shirtless at several formal events and my gut was frightful. I guess the good thing is I feel well enough to worry about these things and not dreaming that I'm in purgatory.

Note, I've edited myself and deleted a paragraph. 

Rich's blog motivated me to write this post. Physically I feel great. 40 mg of weekly steroids have given me osteoporosis so there are definitely aches and pains, but that's no problem. Next week is my monthly darzalex  infusion.  My labs look stellar. Mentally I'm struggling and working things out.

And one last thing. I can tell you the first movie I ever went to by myself. It was a Bronx Tale with Robert DeNiro, the greatest actor of my generation. I can tell you the exact date of my last haircut, it was the Friday before the Vikings/Eagles NFC Championship. The past week Leslie and I spent several days in Ojai, an awesome spot in the hills only about two hours north of LA. And I had a new first. Leslie was off doing her own thing one evening. So I took Gracie sat outside Ojai Valley Brewing, had a beer and read a book. I've never done that before. It was pretty darn relaxing and I think a great representation of life being good and my future. The book? The Best Land Under Heaven about the Donner Party and manifest destiny in the mid 1840s.  I've been reading a lot more lately. I used to think I was fairly smart, but now I'm not so sure. But I'm trying to expand and open my brain. Now reading Fahrenheit 451, a classic that I never read before.  And one truly last thing, I listen to a fair amount of podcasts nowadays. I highly recommend Ear Hustle, the Moth and Ologies.


Sunday, June 3, 2018

From Cure Magazine: Vitamin D Deficiencies Can Impact Myeloma Outcomes

I take 2000 iu of vitamin d per day. It's pretty important for keeping the bones strong. Here's an article and interview from Cure Magazine on the topic. 

Vitamin D 

The Push for Oral Parity

We've gained some traction with our petition for Oral Parity. The Senate has now proposed a bill that mirrors HR 1409.  Fresh off the pr...