Saturday, July 22, 2017

1 Week, 5 days, 44 hours

This is it. Basically I'm done already . This week will be lunches, saying thanks to lots of people, continuing to leave files in an orderly fashion and on Thursday something is planned for me. Last week it hit me that I'm leaving and some emotions started to peculate up.

Early on in this cancer journey, battle, challenge, scare, what have you, I tried to keep going to work just to have a slice of normalcy and to not think about cancer. There were weeks where I'd be lucky to work 10 hours and that was a struggle. I've been back to full time for probably 3 years. It's time to hang it up. Right now my energy goes towards work and I need to redirect it towards myself. It'll be interesting and great. High 5!!!!!!!!






Friday, July 14, 2017

10 working days and it's gotta be Fran Tarkenton

The Vikings played and won their first game ever on September 17, 1961. This is 3 short weeks before I was born, hence the lifelong connection and love of the Vikings. They were led by Fran Tarkenton, one of the all time great quarterbacks.


I'm definitely winding down at work. Deleting files, organizing, transferring information, going to lunch, etc, etc. It's getting very real. It's a strange feeling, but it's the right thing. I can say myeloma-wise and energy-wise, I feel better already knowing that I'm going to be able to focus on health, fitness and enjoying life. I'm becoming a gooey blob, losing muscle mass and barely able to get more than 3 inches off the ground when I try to jump into the air. I've decided one of my retirement goals is to improve my vertical leap. As a youngster and at 5 foot 10 inches I was able to touch the rim on a 10 foot high basketball hoop. A big deal for a non athletic jewish kid. I doubt that can be replicated, but it is humbling when I leap now that I am barely able to create a gap between my feet and the ground.  So I'll strengthen the legs and drop some pounds and see how I much I can improve. I'm guessing the 6 years of dex is playing a role in losing muscle mass and gaining fat mass. Well, the dex and the ice cream.
http://www.mensfitness.com/training/pro-tips/4-tips-increasing-your-vertical-jump








http://www.startribune.com/vikings-rookie-quarterback-fran-tarkenton-got-the-best-of-bears-in-1961/398798671/

Tuesday, July 11, 2017

13!

13 working days.


- 13 is when a Jewish youth becomes an adult. I never had a Bar Mitzvah, which might explain some things.
- Apollo 13
- Dan Marino
- Baker's Dozen
- Wilt Chamberlain













Friday, July 7, 2017

Hyman Roth Godfather Part II

I'm a retired investor living on a pension.



15 Working Days

Recall that back in mid April 2011, I was already not feeling well. I'd been undergoing various tests to determine why I was so fatigued and weak and having horrible night sweats. My blood work looked not normal, but nothing jumped out at my primary care doctor. In the midst of all this, I went to Vegas for a friend's birthday. P.C. (pre-cancer) I went to Vegas about twice a year. Since my diagnosis, I've been twice and am way over due for a trip. I lasted half a day in Vegas on that trip at which point I broke out in a cold sweat, then was burning up and then had terrible shivers and shakes. I went to bed and rescheduled a flight home for the next morning. That second day, I was walking through the casino to get something to eat and had this powerful feeling that I was dying. It was overwhelming and so definitive. I'd never felt that before. Suffice it to say, it left me dazed and concerned. Back home, I was hospitalized, had a bone marrow biopsy, met Dr Phan and was diagnosed with myeloma. And there you have it, a life altering event.  As I approach retirement, I am realizing that this is the first time I've really slowed down long enough to ponder my life going forward. Up to now, it's been about staying alive, seeing doctors, working and being normal. But now I'm going to have time to do what I want, to be healthy and think about what comes next and where I have been.  Whew Wee, it's turning out to be a lot to mull over.


Note that I have made the same $100 bet every year since 1995 on the Vikings to win the Super Bowl. Sadly it has yet to hit. 1998 should have been the year. I actually had $100 on them to get to the Super Bowl and $100 on them to win. All I can say is I hate the dirty bird and I hate the falcons.


Note number two, the Bellagio Sports Book is the best. Plenty of screens and massive comfortable seats. Mandalay Bay is a close second, with the refreshing coconut scented artificial air being pumped in.


There are two ways to get to Vegas from LA. A short 45 minute flight is the best option.  Or you can make a 4 hour drive. This four hour drive can take twice as long coming home if you don't time your drive properly.


Note number three, it took me almost two hours yesterday to go 30 miles from my house to Berenson's office, simply to give research blood. Arghhhh!!!


Needless to say, I prefer the flight to Vegas. But if you do drive, you're taking Highway 15, which today is noteworthy given I have 15 working days left. I think today I work on my retirement to do list.





Wednesday, July 5, 2017

More Norm Snead


16

Norm Snead. 17 years in the league. 5 different teams,. First season 1961...also my first season.  One season with the Vikings...1971.  One winning season...1972 with the Giants. Wore number 16...same number of working days I have remaining. I am Norm Snead.







Friday, June 30, 2017

Work Email from May 11, 2011

I'm down to perhaps 19 working days. I've been grinding since May 2, 2011, trying to balance work, life, chemo, etc.  Myeloma wise I'm good. Otherwise I'm pooped and have had a whole bunch of annoying side effects that I've had to deal with since getting back from Kilimanjaro. It is absolutely time to slow things down.


As I clean out my office and delete or save files and emails, I came across an email I sent on May 11, 2011 to coworkers letting them know what's up. It's quite surreal to read it.....


Good morning,

I am guessing that some of you have noticed I haven’t been around a lot lately.  This is going to be the case for the next 5 or 6 months, where I am working a reduced schedule.  I debated doing a mass email to people and I debated not saying anything. But as a compromise, I wanted to get some of you up to speed.   And you can feel free to share this information.  But also please note that I want this to be low key and somewhat of a private thing.  Plus, believe it or not, coming to work when I can, is a good thing. 

Having said all of the above, here’s the story:

A few months ago, I started to feel weak and fatigued, with an assortment of other weird things going on.  After lots of tests and doctors, I got a diagnosis early last week. I have something called multiple myeloma.  It’s a bone marrow cancer.  I already started chemo….twice a week with every 3rd week off. This goes on for 6 months. So far, I feel pretty good.  If you decide to do some googling, be careful…the typical patient is over 65 and African American male.  So statistics on this don’t necessarily apply to me. I can stay as active as I feel up to.  I am not riding my bike to work though, which sucks. I get too tuckered.

And I think that is it.

Matt

Monday, June 26, 2017

Fighting Cancer Is Not Always Hope and Pretty Ribbons, and That's OK

http://www.healthline.com/health/cancer/the-pressure-to-be-positive#7



22

22 working days to go. Yes!


Little known fact, Paul Krause is the NFL all time leader in interceptions. 81. I modeled my 8th grade game at Horace Mann Elementary after him. I too was an interception machine.








Sunday, June 25, 2017

Hand me an ax

Myeloma is one thing. And that's our main focus. We have it under control. I'm only doing my darzalex infusion once a month. That's good. But the new schedule and my 100% focus on my countdown to retirement translated into me totally forgetting to do my monthly 24 urine collection a couple of weeks ago. That's key to tracking my disease. With my tiredness, I was curious about how the numbers are doing. I went ahead and collected last week and should hear the results this week. I went ahead and did chemo without the results this past Friday. That's all fine and dandy. It's likely the pomalyst that I take orally that's making me tired. But we can't cut it out, it works in concert with darzalex and dex. And then this is a jacked up thing about health care and insurance and the FDA. You have to follow the FDA's guidelines for the darzalex infusion schedule. If for some reason the monthly infusion isn't enough to keep myeloma at bay and we wanted to go back to once every two weeks, insurance wouldn't cover it. Well that seems like bullshit.

As totally excited as I am about not working, I recently it also got me thinking about how I relate to the disease. One of the reasons, falling short of the Kilimanjaro summit bugged me is that it left me mentally feeling like a cancer patient. It was a slap of a reminder that I have limitations. That sucks. When I was younger and healthier, if I fell short of a challenge, I knew I would have other opportunities. When I did my first century bike ride with my brother, I made it about 98.5 miles. At that point my entire body cramped. I hadn't hydrated enough on a hot day. I learned my lesson and made sure that I was prepared and smart doing future rides. But Kilimanjaro, realistically when will I have the chance again? I'll find some sort of challenge that gives me something to shoot for. But you can see how for a week or so after getting home, I was bummed and it was more about the mental "oh right I have cancer".

So when thinking about not working any more, I get a slight emotional twinge knowing that I am retiring because I have this incurable disease. For the past six years, I've worked and tried to live as normally as possible. It's allowed me to feel like a champ and kick ass. It's time to slow things down.  But I don't want to feel like the disease has won. It hasn't of course. I'm excited for the limitless opportunities that now lie ahead of me. And of course, when you think about retiring there is a part of you that wonders how many years you have to live.  I might have a whole lot of years ahead of me. With myeloma you can have the cancer under control, but dealing with side effects can be non-stop. And 20 years of various annoyances doesn't sound super fun. With the cancer and the treatment, my immune system is pure crap. I've got a host of things that pop up. My latest bug-a-boo is my index finger. We've been trying to clear up a couple of warts for months. But with little luck. I have a dermatologist visit in a couple of weeks and we'll talk about how to keep them under control because they are getting ridiculous. And I'll tell you what, I'd be lying if I said I haven't thought about chopping off my fingertip. Do I really need it? Probably not. It's not like it's my big toe which keeps me from tipping over. And I don't mean to say I've thought about it a lot but it has crossed my mind.  I suppose for now I'll keep the fingertip, but we'll see how it progresses.



Epitaph for Cancer's Novelty

Great article from Cure Magazine

http://www.curetoday.com/community/jen-sotham/2017/06/epitaph-for-cancers-novelty

Monday, June 19, 2017

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.




Other than that I'm fine. I did blood work today, see Phan on Thursday and have my monthly chemo Friday.

Tuesday, June 13, 2017

MMRF Webinar Series

The MMRF has a number of upcoming webinars, including one tomorrow June 14 on clinical advances in immunotherapy.


Follow this link to register.   http://eventcallregistration.com/reg/index.jsp?cid=70442t11pk



Wednesday, June 7, 2017

The Countdown Continues

I'm pondering pushing up my retirement date a week or two. I need to stick around to train my replacement who starts July 10, but after that I am free. I have been hugely tired lately. I get about 10 hours of sleep a night and it's not enough. Waking up in the morning is a real challenge. I'd be lying if I said it didn't have me wondering what's going on. I'm also on this weird slow weight gain. Granted I'm not working out much, but I watch what I eat. My labs all look good. My kidneys are better than ever. So I'm not sure what is up. It could be remnants of the ear/sinus infection.


I'm on monthly darzalex. Berenson wants to check my blood every couple of weeks because he's not sold on the once a month infusion. But our hands are tied. FDA says that is what we do and insurance will only pay for once a month.


I'm seriously grumpy and on edge. Lately at work people tell me they're jealous or say it must be nice or that I'm lucky. In my mind, I'm thinking fuck off all of you, I have an incurable cancer, that's not lucky. Right now those thoughts are in my head, but I'm edging close to reminding people why I am retiring. That will certainly make for elevator awkwardness.

Friday, June 2, 2017

61 aka 6 years one month since diagnosis

Pulling away from the 5 year median survival.




Traffic Jam in my Head

I've been getting over an ear infection that had my right ear clogged for about two weeks. It totally impacted my hearing, short term fortunately. It's still not perfect but much better. But the clogged sensation has moved to my nose and partly into my throat. I'm not sick, just clogged and it's fricking annoying. I went to the ENT (ear nose and throat) a couple of weeks ago. We started with antibiotics. Didn't really help. Then they drained the right ear, which hurt like holy fucking hell. Hurt and they told me not to move while poking a hole in my ear drum. Never again.  Anyways, with the myeloma and my lowered immune system we always lean towards being over cautious. So I went back to the ENT this week and they did a scan of my head, to make sure it's not some raging sinus infection. It's not, it's just going to take time to clear up. We did discover I have a deviated septum, which might explain why I wake myself up with my own snoring. (side note, I am rapidly becoming old).  Anyhow, here is one of the scans of my noggin.







MMRF Webinar

Clinical advances in Immunotherapy in myeloma.




http://eventcallregistration.com/reg/index.jsp?cid=70442t11pk

Thursday, June 1, 2017

Saturday, May 27, 2017

Is Prevention of Myeloma within Reach?

Below is a link to a blog post on the IMF website. It's written by Dr Durie and addresses possible ways of preventing myeloma. I had a consult with Durie at Cedar Sinai a few years back. I harvested my stem cells based on his recommendation but they've never been used and will likely never be used. I've always wondered why there isn't more research into potential causes of myeloma.

https://www.myeloma.org/blog/dr-duries/prevention-myeloma-within-reach




Tuesday, May 23, 2017

You Got to be Kidney Me



I just got my latest lab results. Everything looks good. Darzalex continues to work like a charm.  Thursday I see Berenson and I'm sure he'll give the go ahead to switch to maintenance, which means only monthly infusions. That will be fantastic and perfect timing for my retirement/embrace life future.  I also take Pomalyst, an oral chemo drug. Not sure how that will work in maintenance. Note that this timing fits with the FDA guidelines for the drug., meaning that insurance won't have issues with it.


What's amazing to me is that as I soon as I started darzalex my kidney function improved dramatically. For at least two years, my creatinine hovered around 3.5 to 4, meaning I hovered around failure range. But for the past few months, my creatinine has been below 3 and with my most recent labs the number is 2.36. Recall that early on in my diagnosis, the number was over 8. I was on a strict renal diet and my kidney doc at the time wanted me to start dialysis.  I even had a stupid fistula (surgically linking a couple of veins in my wrist to create a super vein) to be used during dialysis. I was not symptomatic for having failed kidneys, so opted not to do dialysis. Oh and I fired my kidney doctor, who was so gloom and doom it was depressing. The thought of dialysis scared the absolute shit out of me. It seemed much more daunting than chemo. And if I'm being truthful, the thought of doing dialysis along with chemo had me thinking fuck all of it and I'd pull a Marley and Me maneuver and I'd find a tree to a curl up under.  But my kidneys hung in there and look at them now!  Amazing and quite a relief.


John Oliver recently did an in depth look at the dialysis industry, including a look at Davita, a leader in providing dialysis.  It's a scary ass story and scary ass industry. It makes me quite glad that I never did dialysis.




Friday, May 12, 2017

Ted Talk: The Magic of Not Giving a Fuck


July 28

I've set my retirement date. July 28. I am super excited and ready. I actually feel great. The darzalex is doing it's job. Today I finished my every other week treatment and starting next cycle I'll be doing infusion only once a month. That is awesome. On Kilimanjaro, it became very clear to me that I want to not work and I want to enjoy life and do the things I want to do. Right now, even though I feel good, I have no energy during the week. I go to work, come home and go to bed at 7:30 or 8. This, for me, is not quality of life. Leslie and I don't have kids, so this is totally doable. We can collect retirement and I can start collecting Social Security Disability even though I'm only 55. Multiple myeloma is an automatic qualifier for SSDI.

I have been battling an ear infection for almost two weeks. It was rather painful for a couple of days then went to being clogged and impacting my hearing. Really annoying. I had it drained the other day. That hurt like fuck. Dr Phan tells me that the dex I get with my infusion will help with the inflammation and the clearing of the ear. As I write this, it already feels more open. I also feel some of the steroid rage coming on. Must sit quietly.

My forehead is just about healed following the removal of the squamous cell carcinoma, aka non-offensive skin cancer.

In a separate post I am going to share post one of the best Ted Talks I have seen. It's appropriate to where I am currently at and is titled The Magic of Not Giving a Fuck.



Tuesday, May 2, 2017

6!!!!!!!!!!!!!!!!!!!

There haven't been a lot of number 6s in the history of the Minnesota Vikings. Surprisingly Bubby Brister is one of those. I can't even remember him being on the team. Nonetheless, 6 is an operative number for today, May 2. Today represents 6 years since my multiple myeloma (an incurable blood cancer) diagnosis. There have been more than a handful of challenges, but today, at 6 years, I feel better than I have since my diagnosis. And as Bubby might have said in the huddle, let's keep the momentum moving forward.
 
 

Friday, April 21, 2017

Squamous Cell Carcinoma

I'm coming up on 6 years since my diagnosis. May 2 is my cancerversary date. I've been on treatment non-stop since May 3, 2011. That means non-stop steroids since then. Dexamethasone is almost universally hated by myeloma patients. It's a physical and emotional roller coaster. My current dose is fairly low and I've learned to predict the ups and downs, but I'm still impacted. Another drawback of the never ending steroids is my immune system takes a hit and I can get various other issues including secondary cancers.


For me, being fair skinned and on steroids, I'm now getting squamous cell carcinoma, which is a non problematic skin cancer. Last year I had one spot removed from my arm. Yesterday I had a spot on my forehead removed, via the Mohs procedure (defined below). It's annoying. Looks ugly, but it's not too bad. Stitches come out next week.


And if you're keeping count and including my foot surgery the year before my diagnosis (my theory is the foot surgery might have lead to myeloma (that and too much aspartame)), I've now had 10 procedures in 7 years. Beast mode.


Mohs Micrographic Surgery
Using a scalpel or curette (a sharp, ring-shaped instrument), a physician trained in Mohs surgery removes the visible tumor with a very thin layer of tissue around it. While the patient waits, this layer is sectioned, frozen, stained and mapped in detail, then checked under a microscope thoroughly. If cancer is still present in the depths or peripheries of this excised surrounding tissue, the procedure is repeated on the corresponding area of the body still containing tumor cells until the last layer viewed under the microscope is cancer-free. Mohs surgery spares the greatest amount of healthy tissue, reduces the rate of local recurrence, and has the highest overall cure rate — about 94-99 percent — of any treatment for SCC. It is often used on tumors that have recurred, are poorly demarcated, or are in hard-to-treat, critical areas around the eyes, nose, lips, ears, neck, hands and feet. After tumor removal,, the wound may be allowed to heal naturally or may be reconstructed immediately; the cosmetic outcome is usually excellent.







Friday, April 14, 2017

More Kilimanjaro Photos

I've put together a bunch of photos from the trip. Some are my pictures and some I borrowed from the pros on the trip. They're basically in chronological order. Starting in Amsterdam, then traveling to Africa, the climb and then back home.

It was an amazing experience and I miss my fellow climbers tremendously. We raised over $260,000 for myeloma research. That's awesome! And I've been absolutely amazed at the support from folks both with donations and the kind words and prayers. It means a whole lot to me.

This link ought to take you the photos.
https://goo.gl/photos/nN1HH45R8FZ4At789

Wednesday, March 29, 2017

Powerful Advice From A Dying 24 Year Old

https://www.powerofpositivity.com/powerful-advice-dying-24-year-old/

2.18

Honestly I don't even know how 2.18 is possible. That's my creatinine number, reflecting kidney health.  Recall at one point it was over 8 and I had a kidney doctor who wanted me to do dialysis. Never did. And now look, my kidneys are functioning like a well tuned machine. The marked improvement began when I started darzalex in November. And my other numbers continue to shine. Yay darlazex!!!!

Monday, March 27, 2017

Free Educational Event about Ninlaro

Ninlaro is a newish oral treatment for myeloma. There's a free educational event on April 22 in Costa Mesa, CA. So if you're in Southern California and wondering about Ninlaro, this might be the thing for you.



Tuesday, March 14, 2017

Kilimanjaro Photos

I've been back home about two weeks. from the Kilimanjaro. It seems like a long time ago. But then again, the memories and the time with an amazing group of people remains fresh.  I haven't had a chance to go through all my photos, but for now here are a few of them. I also want to say that the support and words of encouragement I received before and after the climb have been amazing and mean more to me than I can fully put into words. Thank you!


Our entire team, including porters and guides. The porters and guide made the trip possible.

Our team in front of what are called the Dr Seuss trees.

Me and my fellow patients at the end of the climb. Gary, Terry, April, Nancy and me.

Me on day 2. Still relatively fresh