Friday, July 13, 2018

Infusion Day

My home for the next few hours. Food, Vikings blanket, laptop, phone, Darzalex and dex.

Wednesday, July 11, 2018

Max to the 3rd Power

This is infusion week. It means I did my labs last week and I see Dr Phan today before I can do my darzalex infusion on Friday. I also like to see Berenson the week of infusion. Berenson isn't a requirement but it gives me a level of comfort (and he actually is the architect of all my successful regimens). I see my lab results before I see him so I basically know what he'll say. But it's kind of like a thunder blanket for me. It's calming seeing him. He does take research blood on my visits, so there is value to me going there. I've pondered doing my infusion at his office, but it's a pain in the ass to get to his office and I do love Dr Phan. I can rely on Phan to spend time with me when I have questions. I don't want to give that up.  Also of significance, Berenson's office is at Sunset and Doheny, which is only a mile or so from where I grew up (Wetherly and Gregory Way)  and my favorite bakery (Pico and Doheny). He is also within 2 miles of my favorite deli (Canters on Fairfax) and favorite sports bar (Barney's Beanery (the original) on Santa Monica Blvd near La Cienega). So when I go see Dr B, I try to fit in some combination of these places.

It's about 30 miles door to door from my house to Berenson's office. Depending on traffic it can take anywhere from an hour to 2 hours to make that drive (up the 405 freeway).  Lately I've been leaving my house super early, so I don't have to stress about the traffic and I can get a pre-visit breakfast at Canters or somewhere else. Today I went to an alternative deli, Nate n Al's.  Growing up, across the street from us, lived the son of either Nate or Al. Maybe Al. My sister babysat the young boys and would take them to the deli as part of her babysitting duties. Not a bad gig. The sons eventually took over the deli. It's not as good as Canters, but it's closer to Berenson's office and despite leaving my house at 6:50 today, I was pressed for time so as not to be late for the appointment, I passed Canters. Al's son represented me in the childhood foot injury that may or may not have led to my myeloma (see previous post).

Berenson always has a scribe with him for his examines. Typically it's a younger person who is preparing to go to medical school. For the past 3 years, scribe duties have been covered by two brothers in succession, each of whom is now in medical school. Today he had a new person taking notes. He introduced himself as Max. I said that was my grandfather's name. He asked if it was short for Maxwell or Maximilian. I've never been asked that, I've never asked and I had no idea. Good question though. The scribe is Maximilian, which might be one of the coolest names I've ever heard. I'd make people call me Maximilian if that was name. Berenson noted that his grandfather was also named Max.

My mom adopted a dog many years ago. His name was Dillon when she got him. Same name as one of her grandkids (and of course my nephew) so she changed his name to Max (the dog, not her grandson). Max passed away last year and is really missed. He was a good boy. And for good measure, in college I had a friend named Rachel, but she went by Max. I'm not sure why. Max's mom was a teacher and taught Janet Evans in elementary school. Janet Evans, was a very successful Olympic swimmer and who (it almost goes without saying) is my favorite Olympian of all time. Tied for number two on my favorite Olympian list is Cathy Freeman, a 400 meter sprinter from Australia who is an advocate for aboriginal youth in her country, and Edwin Moses, who dominated the 400 meters hurdles for perhaps 15 years. He was tall and lean, wore glasses, and absolutely smoked everybody on the track. Note that Houston McTear could have been my favorite Olympian if only he had achieved Olympic success. He dominated the 100 yard and 100 meter sprints in the late 1970s and into the early 80s. He was world class at 17 years old. I think injuries and bad luck hindered his career. We are the same age and I remember in high school reading about him.

With regard to my health, my myeloma is doing great. Lights chains are next to nothing. My creatinin is 2.44, which is way out of failure range. I mentioned my foot issue to Berenson and he said that some folks are getting foot fractures if they are taking Xgeva, a monthly bone strengthening shot for myeloma patients who are kidney impacted. I take a relative of Xgeva called Prolia. I get a shot only every six months. He said fractures aren't common with Prolia. X rays at the foot doctor didn't show any fractures, instead they showed just a couple of small pesky spurs. Follow up at the foot doctor is next week and I imagine we'll make a shoe insert that will take pressure off the tender spot on my foot pad where the spurs are.  My neck is a tiny bit sore and Berenson recommends x rays. He thinks, as do I, that it's arthritis resulting from all the steroids I take. When I see Phan later today, I'll run it by him.

I woke up today with a nasty looking hematoma in my left eye. I have no idea where that came from. Berenson says it is nothing and should go away in a couple of weeks. I'll also mention this to Phan. I pondered having the eye doctor look at it. Leslie prefers this but I'm kind of doctored out this week, so I'll give it time to heal. Generally I bruise and bleed super easily. My body is one giant bruise, so it makes sense that my eye might be impacted as well.

I closed out the Berenson visit with a black and white cookie from the Beverlywood Bakery.

Perhaps next doctor visit I'll get to Barneys.

Oh and one last thing, I just finished the book The Bright Hour, about a woman's journey with terminal cancer. Excellent reading and if someone wants it, I'll send it to you. First person to chime in gets it.

Sunday, July 1, 2018

Collection Day

It's been a while since I mentioned my theories behind me catching myeloma. To recap, I have 4 theories. These are:

1) A year prior to being diagnosed, I had foot surgery to remove a bone spur. The spur had formed decades around a bone infection from a childhood accident. My theory is the spur removal unleashed toxins into my blood stream...leading to a blood cancer. I put the least amount of weight in this theory.
2) Aspartame. I drank a shitload of diet soda and even more Equal. I didn't like the taste of coffee, but I did like the effect. So I loaded up 3 or 4 daily cups of coffee with 7 or 8 Equals per cup. That stuff is bad for you and I lean most heavily on this theory.
3) Exposure to toxic chemicals. Diesel fuel, round up, cleaning fluids. I spent many years of my life in the vicinity of the port...exposing me to lots of chemicals. Dr Phan many years ago, mentioned to me that he sees a lot of oddball cancers from the port area. As the years go by I hear about more and more port employees who have cancer.  I'd say this is theory number 2.
4) Plain old bad luck. Shit happens.

I was reminded of my foot theory the other day. For the past few weeks, my foot has been aching. Nothing like it did before I had the surgery, but achy nonetheless. It also feels like something might be moving around in there. It's in the pad area of the right foot. I went back to the foot doctor who did the surgery this past Friday. He made me nervous when he made a face as he felt around the foot. But x rays showed that the bone is fine and I simply have a couple of new spurs developing. Nothing requiring surgery. Instead for the next couple of weeks I am on a soaking, manipulating, and icing routine, Whew about a trip down memory lane! I have visions of taking up running again. It's doubtful it'll happen, but if I could pull off a 10k in the next year I'd be pretty darn happy. So having a non-problematic foot is key.

Meanwhile, my thumb and finger are recovering nicely from the beetle poison. New skin has formed and no warts. I return to the dermatologist this week and we'll do two more fingers. And speaking of the dermatologist, I had a heck of a rash on my ankles this week. Luckily the dermo was able to squeeze me in for an appointment and we're treating with an anti-fungal. Curses you fucked up immune system.

My myeloma is well under control though. Today I'm doing my 24 hour urine collection to see what my numbers look like. I imagine they'll be fine.

And two shout outs. One is to the Leukemia and Lymphoma Society. Two reasons: They have an insurance co pay assistance program that I've tapped into. I hit my annual limit this month, but it's been a heck of a help. Paying for insurance ain't cheap. And the LLS has a program called First Connection, which connects newly diagnosed blood cancer patients with someone who has had the same cancer for a while. I volunteer a fair amount of time to this program, its really a great thing. My second shout out goes to Janssen, who makes Darzalex. They have a copay assistance program that saves me and other patients a couple of thousand dollars a year.  Cancer drugs are not cheap and this program is a giant help.

Meanwhile, I'm still in  a mental fog. Who am I? What am I? How did I get here? Where am I going? I'm sure we all ask these questions, but for me having a giant question mark hanging over my head makes not knowing these answers particularly frustrating. I'll get there. I better.

Monday, June 25, 2018

Shout Out to Caregivers

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.

Infusion Day

My home for the next few hours. Food, Vikings blanket, laptop, phone, Darzalex and dex.