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.

Wednesday, March 14, 2018


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. It was maddening, annoying and scary. Maintaining insurance was a huge motivation for working.  I learned a bit about a cancer patient's rights in the work place. In this regard, below is a link for what, I am sure, will be an informative and helpful webinar:


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. 

Tuesday, January 30, 2018

Stan Wagner

Stan is a myeloma patient who thought of the Moving Mountains for Myeloma program. His Kilimanjaro climb in 2016 is what inspired me to throw my name into the hat. Stan now is taking on a Mt Everest base camp and again is raising funds for the MMRF.

If you're interested in donating to Stan's efforts, click here to go to his fundraising page.

Gary Rudman takes on Everest Base Camp

Gary is one of my Kilimanjaro teammates and fellow patients. He's a beast. He's now climbing to a Mt Everest base camp to raise funds for the MMRF. Gary's motto is Never Stop Never Quit Not Today Not Ever.  To help with his fundraising he has created these bracelets.

If you're interested in donating, click here to go to Gary's page. 

And if you're on Facebook and interested in getting one of these bracelets, here's the page:

Thursday, January 4, 2018

Myeloma Support

I recently met John, a fellow myeloma patient and advocate. He's involved in a program called Multiple Myeloma Journey Partners.  Here's a bit of information about John and the program.

Tuesday, January 2, 2018

See a Myeloma Specialist

Many many years ago I had a consult with Dr Durie. His philosophy is different than Berenson. This difference is a perfect representation of the myeloma challenges. There is no standard treatment and the disease manifests itself differently in everyone.

Some things though are a universal given, such as seeing myeloma specialist increases your chance of having positive results.  Here's a talk from Dr Durie that discusses this.

Monday, January 1, 2018

Happy New Year

New year, new me. Or is it new year, old me? It's been five months since I stopped working. As I have said before, it's done wonders for my physical well being. I feel as good as I've felt since being diagnosed nearly 7 years ago. Of course, Darzalex and Pomalyst have something to do with this. But also being able to rest and enjoy life has been important to how I feel. Mentally, I am getting there. I'm still trying to figure out what next. I have time to think about how I got from May 2011 to today.

I've used this holiday season to connect and reconnect with friends. It's been nice. It also highlights how much myeloma has changed my life.  Can I recapture some of my pre-cancer life? Maybe. Can I balance new and old? Perhaps.

That first year of myeloma there was a lot of in and out of the hospital. This was 2011. Summer of 2011 was also a lock out period for the NFL. The NFL owners wanted some concessions from the players. I'd be laying in my hospital bed watching ESPN on the crappy hospital television, hoping that there wouldn't be lost season. One thought that went through my mind was that I might not live to see the Vikings ever win a super bowl.  That would suck. I've seen t shirts since then that say "Please win one before I die". The NFL season happened without a hitch.  Several years later the Vikings still haven't won a super bowl.

I've spent time on my myeloma page explaining how I've come to be Vikings obsessed.  Before this season I vowed to try and temper my fandom. Even going so far as to not renew my NFL Sunday Ticket that allowed me to watch every Viking game, every week. This season I haven't watched every game. But this season the Vikings are looking pretty good and are being mentioned as super bowl contenders .  The regular season ended yesterday and I'd say at this point my excitement is peaking.

Given how in my mind I've drawn similarities with my life and my fortunes and near misses with the fate and history of the Vikings, I wonder what it would mean if they actually won a super bowl this year. Does this mean I can die happy? Does this mean my history is changing and I'll experience new heights and success? It's hard to say. And it's hard to explain. It might not make sense to anyone at all.  In fact writing this, makes me think that I'm being pretty ridiculous. I explained to Leslie how excited I am for the Vikings run this year. She said go with it.

I had a couple of beers and some calamari with my friend Matt the other day. He's not a sports fan at all and thinks it is all pretty silly. But when I explained to him, that every year for probably 20 years I place a $100 pre-season bet on the Vikings to win the super bowl. And that if they win this year I stand to gain $2,500 and he'd go with me to Vegas to collect, he gets a little excited. Different motivation for different folks. Same results though.

I'm 56 years old. For my 45th birthday I grew a beard as a component of my 45 by 45 list. Since then I've had the beard for probably 85% of the time. The last couple of times I've shaved it off, I've hated my face. It's been puffy from the steroids. I'd gotten fat. So I'd grow the beard back to cover up the puff. Lately though the beard has really made me look old. I've been losing weight and we've cut my steroid dose. So yesterday, New Years Eve, I shaved the beard off. Leslie warned me that each time I do it, I get upset by my puffiness. But this time it's not too bad.  So I may keep it off for a while. I still have another 10-15 pounds to lose.  Cutting carbs has been super helpful with my weight lose attempt.

Cutting the beard is also symbolic. It represents my attempt to get back to the old Matt. The Matt who enjoys life and has energy to enjoy life and friends and experiences. It's been quite a journey to get to this point. Still a work in process.

I'm working on my What Next list. Also still in progress. A couple of things I need to do, is look for a fund raiser/activity that gives me something to focus on and a reason to get in shape. I also need to do things that are non cancer related.

I have pondered before and am thinking about it again...shutting down Matt vs Myeloma.  I don't post much and other than this specific post, I'm not inclined to write about or share my myeloma journey. Approaching seven years since diagnosis is awesome. Better than hoped for back in 2011. But it also gets redundant. I've talked to patients who have had the disease for nearly 20 years and they still have the concerns and worries of living with a disease that could reactivate at any time. Seems like your head might explode with 20 years of that kind of stress.

I'm pretty darn fortunate (my friend Brad who died from myeloma a couple of years ago, refused to say lucky, he always used the word fortunate. I've tried to adopt that philosophy) that I feel as good as I do. It gives me a sense of eases and comfort with the myeloma. Perhaps I am even lackadaisical (which isn't a bad thing).  Thus writing about it seems a bit pointless.  I started this blog as a way of keeping people up to date with my status. It's turned out to open me up to experiences and people I never would have known or had.   But where I go from here, I'm not sure.  We'll see.

For now, I leave you with the clean shaven face and Vikings beanie.

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 myel...