Friday, September 7, 2018

Let's Talk About My Kidneys

When I was diagnosed, I had been in the hospital for about a week; kick starting my absolute hate of being hospitalized. But who likes it? While there, I had a kidney doctor come in and ask me if I realized my kidneys were failing. How the fuck would I have known? His bedside manner sucked.  I saw him for a month or two after diagnosis, but ending up switching to a new kidney doctor. He was unavailable, bereft of information and generally phoning it in, at a time when any new patient was scared and needed support.

Kidney doctor two was ok, technically speaking.  But she talked about me dying a lot and was really gloom and doom. In that first year when we were trying to get control of the myeloma, my creatinine soared to over 8. Per the tables, the 8 meant that my kidneys had failed and I needed to be doing dialysis.  She pretty much strong armed me and Leslie into getting a fistula in my left wrist. She scheduled me for dialysis at 5:00 AM without even consulting with me.  I wasn't symptomatic for failed kidneys. I was peeing, no swelling, no lower back pain. So instead, we educated ourselves about being on a strict renal diet (that would also give me needed energy to help fight the cancer and counteract the chemo) and we did an occasional saline infusion/flush that would take several hours.  On a happenstance walk through a dialysis center I decided that right then and there...and to this day....that is a line I won't cross. Fuck that shit I said then and I say now.

Anyhow, her doom and gloom act got real old and we again switched to a new kidney doctor, aka nephrologist, at Cedars Sinai.  By then we had some traction with beating back the myeloma, so my creatinine started to drop, meaning kidney function improved.  I stayed on the renal diet, minimizing foods with high phosphorus and/or potassium) and the kidneys continue to hang tough.  Eventually though,  I decided to switch kidney docs one more time, for a few reasons.

My doctor for the past three years has been Froch, also at Cedars, and he is the best.  When I became refractory to velcade and revlimid in November 2016, I switched to my current regimen of darzlex and pomalyst.  Lo and behold, with that switch, my kidneys made another dramatic improvement in function.  Enough so that my creatinine dropped to mid 2s, I'm out of failure range and I've basically scrapped the renal diet. A massive plate of nachos followed by pizza the next day were my first dietary splurges.  Sadly, the result of this dietary switch is I am now a fat fuck. I have to lose 20 pounds. I had my quarterly visit with Froch earlier this week and he noted my belly. Leslie made sure he was aware of how far I had strayed off the renal diet. His suggestion was that I go make onto a modified renal diet, even though they operate at abotu 37%,  and I make sure I am babying those kidneys and cutting calories. Makes perfect sense. If at some point the myeloma re-energizes I need those babies filtering shit out like the champs they are. No more potatoes, no more ice cream, no cheese, no cholocate, no stuff that is so delicious. That sucks but it's also fine but oh boy, just 4 days on this low carb (for my weight) and renal diet has me super grouchy.  Add into the mix the dex I am getting today with my monthly darzelex infusion and I'm going to be a real bitch the next couple of days.

Also note, that because of the never used fistula, I shouldn't do blood draws (or blood pressure) from my left arm and the veins in my right arm are tapped out.  When it is labwork time, I have to go to Phan's office and blood is drawn from my port.  Froch likes to check my parathryroid and I forgot to have this test done with my regular labs.  The damned fistula doesn't even work anymore, so I allowed him (and only him) to use my left arm for a small blood draw.

I bruise like a mother fucker. and I knew a left arm draw would leave a bruise. It's a bit bigger than I expected and I am wearing long sleeves for a couple of days.

Lastly, Froch's office has great views, so that in combination him being my favorite nephrologist,  I don't even mind (too much) waiting around in his office.



Wednesday, September 5, 2018

Coincidence? Maybe. Maybe not

Community service award named for Alan Page


Also, while driving to Berenson and the kidney doctor yesterday I was listening to daily mix 2 on Spotify. At one point a John Lennon song was immediately followed by a Jackson Browne. Note that they both share a birthday with me...October 9.  Then at the kidney doctor, I did a blood draw from my left arm and the name of the guy drawing my blood? Jackson.

Tuesday, September 4, 2018

Infusion Week

On the heals of my Alan Page-worthy cancerversary it's back to the drip drip drip this week.  My monthly infusion is Friday, which means a Phan and Berenson visit this week.  Also throw in a quarterly kidney doc visit (Dr Larry Froch at Cedars for those curious sorts).  Friday is also the first Purple Friday of the year, highlighting the fact there is Vikings football this weekend. It's week 1 of the new season. My annual bet on the team to win the Super Bowl has been placed. I've been making the same bet since 1995 and it hasn't hit yet. Last year they were 20-1 and came oh so close. This year it is 8-1, meaning they're one of the favorites.  Buy me a couple of beers and I'll walk you through how my life has paralleled the Vikings history.

With Labor Day being yesterday, I went in to the LLS office today, a Tuesday, for a couple of hours of First Connection volunteer work.  I had epiphany number something this morning listening to the Ologies Podcast on Oceanology. I strongly suggest listening to it.  I'll get into epiphanies at some other time, but I will highlight two significant aha moments: On Kilimanjaro I made the decision that I wanted to end working, leading to my retirement. And in Tahoe while hiking I made the decision that I didn't want to do any consulting work with my old place of employment. It's in the past and I'm moving forward.  I let folks know this last week and was 25% sheepish when my old boss (and friend) told me that while he thought it was a good idea to have me on board, he hadn't made a firm decision to pursue it.  Talk about nipping things in the bud, the bud might not have even formed yet.





Saturday, September 1, 2018

88 Alan Page

88 months since my multiple myeloma diagnosis. Significant for numerous reasons, not the least being that 88 was the number worn by my favorite Minnesota Viking ever: Alan Page. He played for the Vikings from 1967 to 1978 and is the first defensive player to win the MVP award. He is in the college and NFL Hall of Fame. And...while playing he earned his law degree and from 1993 to 2015  served as an associate justice on the Minnesota Supreme Court. He started the Page Education Foundation, has written children's books and has completed marathons.  Not too bad.




Thursday, August 30, 2018

Kicking it

The foot is doing much better, but we're making custom inserts to protect the sensitive area. Baby the foot.





Tuesday, August 28, 2018

A Post from 1 Month before Retirement

I wasn't necessarily looking for this post, but I came across it the other day. It's from one month before I hung it up at work. Nowadays I can take a nap if I get tired and I'm not trying to do it all.  I forget how fricking tired I was all the time:

Tired, Tired and Tired

Lately I've been so fucking tired. It's getting fucking ridiculous. Berenson tested my thyroid and testosterone which both can be impacted by long term steroids and chemo. Both tested fine. I started pomalyst when I started darzalex and we've lowered the dose twice because it was tiring me out. But I've been on the low dose one meg for a few months and it's only in the past month or two that the overwhelming sleepiness has hit me. It's pissing me off. Thank goodness I only have a month more of work. Afternoon are getting real challenging. This weekend, I don't even know how much I slept, but it was a lot.  My myeloma numbers are great, so I'm thinking this could be the result of 6 non stop years of treatment. I'm feeling like an old man. I'm losing muscle mass, getting flabby and super cranky all the time. Plus my eyes are getting worse, hearing is on a decline, my ability to focus on one thing sucks and I continue to bruise and bleed with the tiniest little bump or scratch.  I'll tell you what, this myeloma is no joke. It's the gift that keeps on giving. 


Sunday, August 26, 2018

How Deep is the Lake




I thought about titling this post : When do I stop giving a fuck?  I just spent a few days in Lake Tahoe visiting my nephew and his wife, with a bonus: my nephew's father was there. We had an awesome time. Hiked. Ate. Gambled. Drank. Sat by the pool. Most important was the family/friend time. As I get deeper into my myeloma journey, I have fewer friends and am generally not too interested in hanging out with other people. I get pretty frustrated how people think I am fine and forget about the whole cancer thing. (e.g. too numerous to give just one) Yes, I live pretty normally and am doing really well, but not a day passes that myeloma doesn't somehow dive into my life. Throw it all into a blender and Matt time is pretty key nowadays. My Tahoe visit was a welcome break. And it was a glimpse into how I should be living with very few fucks to give.

I learned that no one has really explored the depths of the lake. At the surface, it is at 6,225 feet. It's depth is around 1,600 feet. Legend has it there are a lot of mob bodies at the bottom. I came across this article: What's swimming in Lake Tahoe's depths? Someone did explore the bottom a bit and came across a fish that had some shark characteristics. Well that would be frightening.

In my 30's and into my 40's I didn't pay a whole lot of attention to grown up stuff. I didn't think too much about retirement, health care, and all the stuff that goes hand in hand with getting older.  Sure people tried to talk to me about these things, but I didn't particularly listen.  I used to make two trips a year to Las Vegas. I wasn't a crazy gambler, but I did like to make things exciting. In fact, and as I've said before, I was in Las Vegas when I got the most sick a couple of weeks before being diagnosed. Walking through a casino the morning after a frightening fever and a bout of chills, I had a strong feeling that I was dying.  It was the first of what has become many intense gut feelings. I've been back to Vegas twice since being diagnosed. It's been a few years, but both times I wasn't yet feeling myself and I didn't totally enjoy the trips. This recent trip to Tahoe was nice because I do feel so good, and it was basically 3 days of not even thinking about myeloma.

I am quite aware that a large reason I do feel as good as I do is because I'm not working. I know I am quite fortunate to be in this position.  But it's a duel edge sword. There are times I feel so good that I think perhaps I could have worked a bit longer. And I know there are folks are struggling much more than I am and I should just suck it up and work (see Survivor's Guilt). Somewhat rationally I know that is somewhat ridiculous, that if I were working full time my quality of life would take a big dive and I'd be drained 24/7.  I have my pension and I'm on social security disability. Myeloma is on the list of automatically qualifying for disability.  With this I can earn $1,180 month without impacting disability.  I have a chance to do some part time consulting with my old job. On one hand it wouldn't take too much time and would be nice to have the extra income, but on the other hand I want as few responsibilities as possible, including not wanting to wear slacks and button down shirts. I busted my ass for seven years to keep working and to stay on top of my myeloma. It was exhausting, physically and emotionally.  I felt like I had to work extra hard so folks wouldn't think I was impacted by my disease. I might have done too good a job, because, frankly, there were times a few years back where I felt like our human resources was my enemy and preferred I be sicker and not showing up to work. Reasonable accommodations was not a concept that was bandied about.  It got better, but this was also a function of me feeling better.  So yeah, it's nice to be wanted and I do have some ownership of my old job, but I'm not 100% certain I want to go back even on a limited basis.  I do need to decide quickly. I'm meeting with my old boss this week, and he's awesome, but I need to have an answer for him.

On a bigger scale, this opportunity is really a test of how I want to live my next/last 1 or 5 or 20 years.  I want to not give a fuck about much.  I want to enjoy each day and basically do whatever the hell I want. I found out in Tahoe, I hold back a bit. I'm not as carefree as I was 20 years ago, but then, who is. This is a little maddening. Now, more so than any other time in my life, I should be living carefree.  Arghhhh! It's a challenging balancing act. Again, I understand that I'm super fortunate to be in the position where I can think like this. But if you throw in the remnants of my dream in March when I began to wonder if I am already dead and basically in a kind of purgatory, and I'm in a mental maze. I'm working on it. And don't get me wrong, I'm enjoying life and feel good, but I want to have some sort of road map.  It's like I know Lake Tahoe is deep but I'm not quite sure what's at the bottom.

Yesterday I hung out with Leslie and a couple of friends back here in Long Beach. It was awesome and gave me a chance to hear other perspectives on the meaning of life. Today I am going walking with a Kilimanjaro friend who lives near by. So there is a balance out there. As a Libra I'm all about balance (aka indecision?)


Wednesday, August 15, 2018

H.R. 1409 Cancer Drug Parity Act

I've created a petition to the House Energy & Commerce Committee's Health Subcommittee, urging passage of HR 1409. Please consider signing.

Tuesday, August 14, 2018

Words or Lack Thereof

Not really a whole lot to report. Last Friday was my monthly darzalex infusion.  I also take 1 mg of pomalyst for 21 days with 7 days off.  We're approaching  two years on this regimen and it continues to work pretty darn well, No light chains, low m spike, kidney function tremendous. We've got my dex dosage down to 12 mg that I get with my infusion. My crashes aren't as bad as they used to be when I got a higher dose, but they still happen. Sunday and Monday I'm moody, irritable, and slightly depressed. Today is Tuesday and I'm all done with that nonsense.  Berenson has me also taking an oral steroid, medrol, at a low dose, every other day and it's pretty innocuous.

Leslie was out of town for a few days, so I had the house to myself. Gracie napped in random cool spots in the house and I binged on 23 hours of Handmaids Tale. I read the book last month and had to see the show. It's powerful and a little frightening. I got home from the doctor after treatment on Friday and hardly left the house until picking Leslie up at the airport. I had food delivered, roamed the house and hardly spoke a word for those few days. Fairly soothing. Oh and let's not forget I did watch the Vikings first preseason game of the year. They looked pretty darn good, although preseason isn't always a realistic gauge. I can guarantee by week 1 of the regular season I'll be in full on this is the Super Bowl season mode. 

Health wise I'm good. Staying fit. Warts are under control. We did x rays on my aching neck and there is really nothing new there. Osteoporosis, some degenerative disc issues. Nothing horrible and I think I've got a handle on it. I still need to add yoga to the mix. There is a beginners class tomorrow night that I'll try and make it to. Been walking a whole lot, so of course my foot aches. I have a follow up with the foot doctor later this week.  Some inserts might be all I need. I'll be 57 in a couple of short months. I can't believe it, although I've said before that this here myeloma has fast forwarded my internal clock. Old age isn't far away. 

I've come to grips with the unknown and now am just focusing on living my best life. Cliche, but true.  Next month I'll be taking an on-line course through the University of Minnesota, which, if you know me, will help fulfill a lifelong obsession/love affair with the State of Minnesota. Started with the Vikings and blew up from there. On my laundry list of oops, you can include not applying to the university when I was looking at schools coming out of high school.  I've got my class choice narrowed down to a history of landscape architecture or a course on renewable energy. They both sound interesting, but I'm not sure which I'll take. Taking both isn't an option. 

I've got a new therapist which is fantastic.  She is definitely helping me with guilt, regrets, identifying who I am, not being bitter and embracing life. Like I've said before, not working has given me a bit too much time to think and I'm feeling like I need to get back to Matt. What is Matt? Hell if I know. 

Going to Lake Tahoe in a few days. I'll see my nephew, do some hiking, gamble a little bit and have a cocktail or two by the pool. Next month it's off to Colorado to see my mom and brother.

I'm still volunteering for the Leukemia and Lymphoma Society on their First Connection program which connects newly diagnosed blood cancer patients to someone who has experience with the same cancer.  It's an awesome program.  I've cruised past 7 years since being diagnosed and just recently experienced survivor's guilt. What the hell? Let's add to that the mix.  I've heard about it. And now it has hit me. The therapist will hear about this tomorrow. Chemobrain is in full force. My ability to focus and recall names or things is hugely impacted. It was funny at first, but now it's pretty annoying. 

Wrapping up Trevor Noah's excellent Born a Crime and moving on to Spying on Whales by Nick Pyenson, which I'm super excited to dive into. 

And that's my update.

Saturday, August 11, 2018

Latest Cycle Underway

And we're off. This month's labs look great. So yesterday was my monthly darzalex infusion. Super busy at Phan's office and I got there later than usual so it was a long day.  Interesting factoid...each darzalex infusion is about $14,000. I get copay assistance from the manufacturer, Janssen, plus my out of pocket from my insurance caps at $2,650 annually.  Also started my 21 days of 1 mg of pomalyst, which is an oral drug and gets shipped to my doctor's office. Factoid two is that a 21 day supply of pomalyst is about $17,000. I am extremely fortunate that via my insurance I am obligated to only pay $40 for the one month supply. I do get copay assistance on this as well from Celgene the manufacturer and end up paying $25/month. Factoid 3 there is not a monthly cap on oral chemo costs to the patient.  More and more chemo drugs are becoming oral. So folks are going bankrupt trying to pay for their oral chemo or they don't take them as prescribed.  There is a languishing bill, H.R. 1409 Cancer Drug Parity Act of 2017, in the House Energy and Commerce Committee, which would make it so there are out of pocket caps for oral drugs just like with the infused drugs. Why it's not moving is anyone's guess. Although it doesn't take a lot of thought to come up with a potential reason.


Friday, August 3, 2018

Trip Down Memory Lane

My very post.

Saturday, May 21, 2011
I should have stretched

On May 2, 2011 I was diagnosed with having Multiple Myeloma. My girlfriend Leslie and my mom were with me when I got the diagnosis. It's a bone marrow cancer that severely impacts my body's ability to produce blood. I'd been real fatigued for about 3 months and tests after tests came up with nothing. Finally I was hospitalized for a blood transfusion, and a bone marrow biopsy identified the problem.

The typical patient for this type of cancer is someone over 65 years and an African American, of which I am neither. I'm 49 and Jewish.

How did I get this cancer? We might never know. But in thinking about things, I wonder if my years of never stretching had something to do with it. All my life I've been pretty active...running, cycling, hking, gym, etc, etc. But I've never been a stretcher. Friends told me it would catch up to me. When I'd go to the gym with my friend Jenni, she'd stretch and I'd just stand there and tell her that Jews don't stretch. My nephew Dillon stretches several times a day and believes that is a real key to good health. Well, for him, good heath is stretching, trigger points, and coconut oil. He was actually visiting when I first started feeling weak. We just assumed I was getting old and out of shape.

People weren't kidding when they said it would catch up to me. I should have listened. Anyhow, this blog is the story of my adventure of battling the disesase. I have already started chemotherapy. And my calves are already smaller from the lack of physical activity. But I am about to start working out again. Doctor says I can do as much as my energy allows me to do. I'm also continuing to work part time.

It's going to be quite a ride.

87 plus 1

87 months and 1 day since my myeloma diagnosis. Let's recognize Mike Tice, one time Vikings tight end and head coach.



Thursday, July 26, 2018

Cheryl Boyce

I've mentioned before that I've met some amazing people in the 7 plus years since I was diagnosed. One of my absolutely favorite people is Cheryl Boyce. She's had myeloma for 20 years. Myeloma, no myeloma, so is the nicest, most caring person you'll ever meet.

Cheryl is on a Stand Up to Cancer myeloma dream team which is looking at precursor conditions that might lead to an early diagnosis. Here's that story. 

And here are a couple of videos with Cheryl:

Cheryl Boyce: Living Well with Multiple Myeloma from Patient Power on Vimeo.

Sunday, July 22, 2018

Ologies Interview with Dr Durie

I've mentioned before that Ologies is one of my favorite podcasts.  Several months ago, they had an interview with Dr Durie, a leading myeloma specialist, who we had a consult with several years ago.

Hematology





Guide to Living with Multiple Myeloma

This is a pretty handy guide. Bill McHugh, who is on the cover, is a pretty inspiring myeloma survivor.

Thursday, July 19, 2018

Getting My Learning On

Don't get me wrong, myeloma and cancer suck. But I will say that since being diagnosed I've had the chance to meet some of the most passionate, caring and inspiring individuals. On Kilimanjaro I was with 5 other patients who are not letting the disease slow them down. And earlier this week I was in Boston to spend time with patients and caregivers who are so smart about the disease and so dedicated to supporting and helping others impacted by myeloma. I also got a chance to tour the facilities of Takeda Oncology where they make velcade and are working on finding new and better treatments.  I used to feel so out of place and not smart when I was with these folks.  But for the first time, I feel like I kind of understand what they're talking about. I've got a ways to go, but I am getting smarter about the disease. I'll try and share some things I learned in a future post.







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 whee...talk 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


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 

Friday, May 11, 2018

Is this swollen

In the never ending quest to fight my crap immune system and ward off warts, my dermatologist is trying all kinds of stuff on my fingers. We did the the powerful heat lamp and no success. Now we're doing a pilot project on the worst of the fingers. It's some kind of lotion that basically fries the shit out of the things. She told me not to pop it, but I so want to. I won't though.


From Cure Magazine: My New Normal Isn't Quite So New Anymore

Wednesday, May 9, 2018

Crazy Cancer Lady

I recently discovered a cancer focused podcast called REACH - Research in Exercise And Cancer Health.   The episode I listened to was an interview with the Crazy Cancer Lady about living with a terminal cancer. She doesn't have myeloma but she is living with an incurable cancer and her insight in how she deals with this is spot on. I hate to say it's great given it's a talk about cancer, but it's a great discussion. It's about an hour long, but if you listen to podcasts, this is an episode you ought to hear.

It's episode 38 and here is the link.

And here is the link to the Crazy Cancer Lady's blog.

Big News of the Darzalex Front.....

The FDA has  approved the availability of Darzalex to newly diagnosed myeloma patients who are not eligible for a stem cell transplant.

Wednesday, May 2, 2018

Seven!!!!!!!!!!!!!!!!

Today is 7 years since I was diagnosed with multiple myeloma. That's 84 months. In 1998 the Vikings were led by Randy Moss (84) and Randall Cunningham (7). They finished 15-1 and at the time scored the most points of any team in NFL history. It was a memorable season, except for the fact that it ended painfully and sadly with an upset loss the falcons in the NFC Championship.  That marked the first year that as an adult I didn't watch the super bowl. And to this day I hate Dan Reeves and the stupid dirty bird.  Instead of the super bowl, I went to a movie with my mom and Ed, although I can't remember the movie. I do remember we saw whatever it was at the AMC theaters in Century City, which for many years had the earliest Friday matinees in town which was perfect for when I had every other Friday off of work. It's also where I saw my first movie by myself; a Bronx Tale with Robert DeNiro, one of my favorite actors of all time. 

On the myeloma front, I'm feeling pretty good. Basically on cruise control, which in late May of 2011 Dr Phan told me was our goal.  Thank you everyone for the support, kind words and love. It's been a hell of a journey and it has a long way to go. I'm ready for whatever lies ahead.


Saturday, April 28, 2018

Car T-cell Therapy Process

Car t-cell therapy is all the rage in terms of cancer treatment. For myeloma treatment, it is the next wave. If you're like me, you don't understand it. Well, now we do...here is a simple and easy to understand chart of how it works (from the LLS):




Wednesday, April 25, 2018

Pedaling towards 7

Friday-Monthly Darzalex

Sunday-Rode to my old office buidling

Wednesday-IVIG infusion for immune system boost

Monday, April 23, 2018

Myeloma Survival

Gary Peterson is a myeloma survivor and maintains a website www.myelomasurvival.com

Here's his latest on myeloma survival rates:  Myeloma Survival 


Saturday, April 21, 2018

T minus 11 Days

7 years coming up in 11 days. When diagnosed I wasn't sure I would make it to one year,  although at some point I made a mental note that I'd be happy to get to two.  We had some real challenges finding a successful first line of treatment that first 12 months. When I hit two years, I changed the mental note to five years. I flew past that mark, although I did become refractory to my maintenance regimen six months after the 5 year mark. When that happened there were times I felt even worse than when I was first diagnosed. I switched to Darzalex and Pomalyst, which are kicking ass and I feel better than I have since probably 2010. So when I hit six years last year, it passed almost without notice.

May 2 will be 7 years since diagnosis. While I never made a new mental target for how long I will survive, the number seems way way out there now. But I gotta say 7 feels pretty good. That's getting to be a while.

I just read a book called The Kevin Show by Mary Pilon. It's a true story about an Olympic sailor, who is bi-polar. His disease manifests itself in such a way that he thinks he is the hero in a reality show and is being told what to do by an unseen director. His disease is called the Truman Show Delusion, a name given to the condition 20 years ago as a nod to a Jim Carey movie called The Truman Show. He takes every coincidence as proof he is on the show.  The book mentioned something called the Cotard Delusion, a not very common form of being bi-polar where people think they are already dead and therefore have no regard for their physical and mental being. When I first read this I thought about my recent dream where I thought I was already dead and in purgatory. I wrote an half asleep list of what seemed like more than coincidences as proof. (Mott the Hoople's song Golden Age of Rock and Roll is prominent on my list) But in googling Cotard Delusion, I'm not even close to that disease. It's intense, scary and dangerous. I don't have it and that's a relief.

I had my monthly darzalex infusion today. Phan has new nurses and had a full house today, so it was a little longer infusion than normal. 6 hours. I watched The Truman Show today. I saw it when it first came out and liked it. But I really loved it in my second viewing. I recommend it. 

Back to the 7 years. I'm planning a small 7 year outing for me and Leslie and a few friends. I'm pretty excited about the milestone and want to share the excitement.

Wednesday of this coming week I get my first IVIG infusion. It will be boost my immunoglobins which should help to find infections and viruses. Even my dermo thinks it could help with my warts.  My IGG last week was 338, an improvement over the 250 last month, but still under the bar of 500 that insurance uses, so getting approval was no problem. I'll say this about Dr Phan's office, they've always taken care of me and worked with insurance and made sure I don't need to stress about certain things. I'm sure I'll take them some sort of food goodies on May 2.

On October 9 I'll be 57. That blows me away. I might participate in some kind of event to commemorate the milestone and perhaps turn it into a low key fund raiser for Berenson's non-profit. It's next in the rotation. I was thinking about an MMRF bike trip/fund raiser to Bryce and Zion. But it's a $5,000 target fund raising target and I'm not up for that big an effort. Besides, in March 2019. with Captain Terry from my Kilimanjaro team, I already know I'll be on his team for the LLS Big Climb which I've done twice before (pre and post myeloma diagnosis). So for that I'll make a fund raising push. I don't want to bug the crap of folks too much with dollar requests. Leslie and I and Gracie will take our road trip the canyons later this summer.

We've lowered my dex dosage over the years, so the insomnia isn't nearly as bad as it used to be, but it is still there, therefore this rambling blog post.

Friday, April 20, 2018

Radiology on Ologies Podcast

I've probably mentioned this before (I'm not even bothered anymore by repeating of statements...I've accepted chemo brain and getting older) But I've been listening to an awesome podcast called Ologies. The most recent topic was radiology. It's a really good listen for anyone who has undergone a host of diagnostics.  Just click on the image.

 Radiology

Tuesday, April 17, 2018

Stand Up To Cancer takes on Multiple Myeloma

I haven't talked about Stand Up To Cancer.  They're about information sharing as a way of curing and treating cancer. They just announced an effort aimed at Myeloma.  Take a looksee...

Stand Up To Cancer takes on Multiple Myeloma

Saturday, April 7, 2018

3 Beers In

It's national beer day for what's it worth. I continue to inch towards 7. It's a cinch.  I've asked a lot of folks, well three, who are on darzalex and get ivig. No one has heard that the ivig can impact darzalex efficacy. Berenson  indicates anecdotally that the ivig can help the body fight myeloma. Makes sense given it's boosting the immune system. Phan so far is the only one who hasn't been all on board with the ivig. He does want me to check with my kidney doctor before I can do the ivig, which is about a 4 or 5 hour infusion. I have an appointment with Doc Froch the nephrologist on April 18. But I don't want to wait, so I'm going to figure it out on my own this weekend. Ideally I'd like to get ivig this week and then the week after I have darzalex.  I'm getting tired of the low immune system. Yesterday I thought for a second I was getting another cold. Today, I don't think so. But another cold on the backs of the flu and cold over the past two months would have pissed me off and impacted my mental stability.  But...the skin issues aren't going away and per the dermatologist, a boost in the immune system should help the skin. It's worth noting that in 2014 and 2016 I had miserable surgeries related to my immune system. It's 2018 so, we'll see how things go. I am checking in with that doctor this week to see how it all looks. Fingers crossed.

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

CANCER AS A DISABILITY: YOUR RIGHTS IN THE WORKPLACE

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:

CANCER AS A DISABILITY: YOUR RIGHTS IN THE WORKPLACE

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.







Let's Talk About My Kidneys

When I was diagnosed, I had been in the hospital for about a week; kick starting my absolute hate of being hospitalized. But who likes it? W...