Saturday, April 27, 2019

T minus 122

122 hours till I hit the 8 year mark. I was diagnosed on May 2, 2011 at roughly 10:30 AM. I didn't know until several days later that May 2, 2011 was also the day the U.S. got Bin Laden.  Two days prior I had been released from an 8-day stay in the hospital for severe anemia and near kidney failure. One day earlier, May 1, I actually went to work for a bit. That was weird. What the fuck was I thinking? Well, looking back, I ask myself that a lot. The shock and fear and exhaustion and unknown makes so much a blur.

To this day I thank my lucky stars that Dr Phan just happened to be the oncologist on duty when I was hospitalized in late April 2011.  The myriad of other doctors I saw had no fucking idea what was wrong with me.  An infectious disease doctor spent 30 minutes with me trying to figure out if i had traveled to some foreign land and got too close to an infected farm animal. A trio of doctors from my primary care office came by every day and asked the same questions over and over, day after day.  Dr Phan knew right away, but he wanted a bone marrow biopsy to confirm.  Hence on May 2, we (me, Leslie and my mom) went to his office to get the word.  When I saw the hematologist sign outside his main door, I think it hit me what was up. Sort of.  In the meeting, he said the bone marrow results were due any minute. He sent me upstairs to get a blood draw, where I listened to a tattoo covered fella talking on the phone about how he hated needles but had to give blood. By the time I returned to Dr Phan's office, the results were in. He explained multiple myeloma to the three of us. He explained our plan of attack. I basically stopped listening when he said it was incurable.  Well shit.

May 3, I did a full body/bone scan and had a port inserted. I was hit by a fever and cold sweat while doing the bone survey.  I would have died right there, if I had my druthers.  The same day, I did my first chemo treatment. Whoa! whirlwind.

Dr Phan is still who I turn to when I need to talk or need to understand something about my disease. I love him. I saw him earlier this week and we chatted about sea lions, bikes and Flagstaff. A few days earlier I had returned from a road trip with my nephew and Gracie, to Flagstaff, Santa Fe, Colorado to see my mom who was celebrating her 83rd and hasn't slowed down a bit, Moab, Las Vegas and then home. It was an awesome trip. Really helped put things into perspective. Gracie got to experience snow for the first time and loved it. She's 12 and super healthy, but honestly I saw the snow experience as something on Gracie's bucket list. Dillon who lives in Lake Tahoe has his first petrified forest beer on the trip. I imagine he didn't know this was on his bucket list.

After May 2, the remainder of 2011 was a battle to stay alive. It took 4 different (or is it 5) regimens to find one that worked. Initially I went to City of Hope thinking I'd do a transplant, but they wouldn't take me, given the condition of my kidneys. The was my first education into the health care system and how we aren't always people, that we're numbers. And City of Hope worried that if I didn't survive the transplant given my kidneys might fail, that it would impact their stellar 95% success rate. What also makes Dr Phan great is he doesn't have a huge ego and he recognized that I needed to see a true myeloma specialist. He sent me to Durie and Berenson. Berenson was first and the three of us (Leslie, mom and me) went to see him. I loved his philosophy which was to focus on the individual and get them to where they have a quality of life that is acceptable to that individual. He is also anti-transplant. From Durie, I was convinced to harvest my stem cells, just in case I needed them at some point. 5 million of those suckers sit frozen in the bowels of Cedars Sinai.  Leslie and I were so scared to tell Berenson that we were doing this knowing his feelings about transplants, Durie and anything not Berenson.

I discovered that support groups aren't always the best thing for me. I went to one and left depressed with all the talk about who had died. I also learned that many folks saw Berenson as a  quack. But you can't argue with success.  I can share that in the fall of 2011 when we were still struggling to find anything that worked on me, Berenson blurted out that if we didn't find a successful treatment, I might not make it the end of the year.  I remind him of this, but he denies it. My first kidney doctor also mentioned death to me several times. She sucked and was summarily sent packing. I never did dialysis but she did bully me into getting an AV fistula that made for fun party tricks, with the high powered blood pulsing through my left wrist. She signed me up for dialysis without telling me at 5 AM in the dialysis center in her own office and told me I couldn't go anywhere else. Well, shit, that's not at all true. I declined and never did dialysis. I mentioned the other day my creatinine is 1.99, down from a high over 8 that first year. From statistical kidney failure to now just kidney damage. A renal diet, lots of water, and getting the myeloma under control did the trick.  For me dialysis is a line I won't cross.

For the first six years I kept working. For the first year and a half, it wasn't full time, but I was able to maintain insurance and a full paycheck thanks to the generosity of my co-workers who donated their sick and vacation time to me. That blew me away. However I had to go back to full time well before I was ready thanks to those mother fucking assholes in human resources, who pulled the rug out from under me and changed the rules just like that.  Leslie and I tried are darndest to have meetings and talk to people to plead our case. Leslie, as she has done for 8 years, fought for me and went all out to make things happen and nobody would talk to either of us. It was some real bullshit. At that point I was still in the throes of shock, fear and confusion and basically work pressured me into dropping the issue and returning to full time.  That is absolutely one thing when I look back where I should have fought back harder and sued their asses. Seriously.  But my mind wasn't right to take that step. Now that I'm not working I look back on those six years where I busted my ass to keep all the balls in the air and so much of it makes no sense. Like how did I do it? Work, treatment, sleep. That was it. How was even able to make any decisions?  High up the anger list is how work tried fucked me over. I mean I kicked ass at work. I didn't want cancer to interfere and I became a much better worker. Working allowed me to have some normalcy and to not think about cancer for several hours a day. And most people understood this, the ones that didn't....oh boy. But we move on.

I've come to realize that for the first several years, while I fought and battled and made sure I was as healthy as I could be, I wasn't really enjoying life. My expectations were that I wouldn't get to 8 years and that was fine seeing how life kind of sucked. And I'll be the first to admit that I am super fortunate to be able to not work now. It has totally changed my outlook on life and I'm able to enjoy things much more. I still feel a internal pressure to do shit sooner rather than later. We have no idea how long the darzalex will work. It's been 2 and a half years now and it's the best drug I've been on. But at some point it will likely not work. Myeloma is smart like that. And I now know what survivors guilt is all about. I have a couple of friends who are struggling right now and I feel guilty for doing so well. I try to minimize how good I feel when we talk.

And this leads me to a discussion of how much I have changed in 8 years.  I am much more understanding, empathetic and sympathetic of the challenges everyone faces. Perhaps to a fault.  I've always been big on personal space and HATED hugs, but now I'm a hugger.  I HATED public speaking but now I kind of like it and as an (unexpected) advocate I do a fair amount of it and I think at times I can go on and on and on.  We try to look forward but I struggle with regret and guilt from actions from pre-cancer Matt, and am even bothered by actions from the first six years of cancer Matt. I'm a huge softy for animals. I mean I always liked them, but now, if I was young and had energy and money I'd have a few acres for rescued animals of all kinds. And I do my best to not eat them,  I'm a home body now.  I still like going out for a beer now and again, but I really like quiet time and solitude. I no longer mind when people say they are praying for me. And where I used to get annoyed when people say "god bless you" as a sign off, I now actually return the sentiment. And I'm not even a god believer, but I like the heartfelt kindness when people say it.  I am a bit more spiritual just given some of the dreams I've had over these year that left me thinking I might be dead already and in purgatory, or left me feeling that I was about to die but I'm not ready for it. My step dad Ed who passed in 2005 has played a powerful role in letting me know it wasn't my time yet.  He visits me in my dreams every now and again and reminds me of that fact.  I'm a fledgling cook now. There is something meditative and escapism about it. I have a much firmer grip on who I am and as opposed to those first several years, I now look forward to living a long life and experiencing things to the utmost degree.

Yesterday was my monthly infusion, so today I'm flying on dex, which gives me a combination of rage, irritation, energy and so on. By Monday I'll be an emotional wreck and that lasts for a couple of days. By the middle of the week I'll be back to normal, whatever the hell that is. And Thursday at 10:30 marks 8 years. Who would of thunk. My goal has changed. At first it was to get through 2011. Then it was to make it two years, then five years, then ten years and now, I'm not sure. A lot I suppose.  We'll see.

1 comment:

  1. Super Awesome Post Matt!!! Loved reading your whole story in place. Crazy how parallel our story is. Altho your kidney damage and Drs telling you all those negative things, I never had to deal with. The work stories. Ugh, awful for you, and crazy how you and I tried to maintain "normalcy" thru "denying" or suppressing, or minimizing our "hell"! Congrats on your 8 years! I hope you do something super fun and special, and most important tell Myeloma to F Off!!!
    Great post Matt, you have a lot to share with the world and all us in the stikin Myeloma Club. Keep on keeping on, and we'll meet up before 2020!!


Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.