Thursday, October 8, 2015

Other Stuff

Flew home last night. Chemo today. I pushed my Tuesday treatment to today, Thursday. I'll get back on my Tuesday routine in two weeks. I'm a creature of habit and routine with my myeloma, so doing chemo on Tuesdays at 2:30 is key.

Everyone at Dr Phan's office got me a card and made carrot cake cupcakes. Super thoughtful. Tomorrow is my 54th birthday. This follows my recent 54th month anniversary since my diagnosis. Lotto time!!!!!

There was a parking lot snafu at the Los Alamitos Medical Center. Took me nearly 40 minutes to get out of the lot. And what the heck is this having to pay for parking at a hospital? Seems wrong to me. That 40 minute wait was long enough for my dex to kick in allowing roid rage to rear it's head. I managed to talk to the parking manager and let fly about a dozen fucks. I surprised myself. He was speechless and probably a bit frightened. But, hey, it's fricking ridiculous that people who are probably feeling less than well have to sit for 40 minutes and then pay for that. And you can guarantee that when I retell this story in a couple of days, the wait will have gone from 40 minutes to over an hour, and I will have been on the verge of throwing up in my car. Embellishment is a privilege of post chemo.

Myeloma Advocacy

Recently I was invited to join some of the leading myeloma advocates in a discussion of the concerns and unmet needs of myeloma patients. I was absolutely honored and humbled this week to join 8 fellow patients and 2 caregivers. Each of the participants has a powerful voice and all are passionate and so so smart. At times I was scratching my head, wondering why I was there.

It was an amazing, dare I say life changing, experience. I saw a couple of old myeloma friends and made some new lifelong friends. The myeloma community is amazing in its strength. I could go on and on. But I'll leave you with this unofficial photo of the group. I'm in the back on the right, partly covered by shadows.

Friday, October 2, 2015


54 months since diagnosis.  Dr B today. Labs look good.  

Tuesday, September 29, 2015

No chemo this week

I will be getting a procrit shot later today to help my blood counts, but it's an off week from chemo. So I am at work and stuck in meetings. This is my myeloma journey.  Can you tell I'm bored?

Cure Talk on Myeloma Diagnostics This Week

This Thursday October 1, at 4 pm west coast time/7 pm east coast, there is a cure talk discussing myeloma diagnostics and testing. Should be a good listen. Call in number is

Saturday, September 26, 2015


It's only been a few month since Brad passed away. I've written about him many times. He was a father, husband, friend and a one of a kind amazing person. His energy and drive and positivity was unique, and kept me going during times I was down. His community is raising funds to put his name up on a scoreboard at the little league field in his town.  I've attached the link below, if you're interested in helping. Thanks!

Honor #Bradstrong

Wednesday, September 23, 2015

A good friend is raising funds for his stem cell transplant

Please take a look at the attached link. Kenneth is a good friend and next week is having his second stem cell transplant. To do so, he's had to temporarily move 2,000 miles from home and go on medical leave. Any amount helps.

Kenneth's stem cell transplant fund

Also, a brief note. If you were thinking of getting me that Apple watch for my upcoming birthday, forget about it and think about helping out a friend.


Friday, September 18, 2015

Those funny kidneys

My myeloma impacts my kidneys. We track creatinin (or is it creatinine? (shit I don't know) to see how the kidneys are doing. At the height of myeloma activity, my creatinin was over 8. At that time my previous kidney doc wanted me to start dialysis. This was about 3 years ago. Once we got the myeloma under control, the kidneys started to improve. When doc Zoller scheduled me for dialysis, I opted to pass (and changed doctors, she was way too doom and gloom). To me, even though the numbers suggested kidney failure, my kidneys still worked. No swelling, I could still pee, no dry skin. Since then my kidneys have improved. At best, my creatinin has been in the low 3s. They are definitely damaged, so they'll never fully recover. Normal kidney function would translate to creatinin around 1 or less. Over 4 by definition means kidney failure. Low 3s translates to severely damaged. My kidneys likely have scar tissue, but they're still working. I take a blood pressure medicine (losartan) to open up the capillaries in the kidneys and help them bounce back. My blood pressure is always low. But the combination of low blood pressure and low hemoglobin, means that I often get real lightheaded when I stand up. I simply stop, put my hands on my knees and the dizziness passes.

Recently, my new kidney doctor loosened up my dietary restrictions. Generally a renal diet means no food with high phosphorus or potassium. No dairy, beans, nut, soy, spinach, bananas and so on. Because my phosphorus and potassium numbers were good, he gave me some freedom in my diet. In the past month or two, I've had nuts, ice cream, cheese and so on. I wasn't going crazy, but I was indulging. Two weeks ago my blood work showed my creatinin had snuck up over 5...back into failure range. My myeloma numbers were good, so the kidneys weren't showing the effect of strengthened myeloma. But something was going on. For the past two weeks, I've gone back to the strict boring renal diet. This morning was more blood work. Just got the call from Dr Phan's office. Results are in. And the creatinin is back to 3.9. Oh hell yeah, that's better.  I wrote a long time ago that the thought of doing dialysis scared the daylights out of me. I've walked through a dialysis center and it's sad. Very sad. Chemo I can handle till the cows come home. But dialysis...nope, no, no way. So I gotta baby these things. They're all I got. One side note, myeloma patients generally are not eligible for kidney transplants. Because of the cancer, we're bad candidates. Anyhow, hopefully they remain under control.  And I drink tons of water. Sorry California, gotta do it.

Here's a photo of me carrying my blood from Dr Phan's office to the lab. Because my veins don't work any more, we have to draw blood from my port. A nurse or the doctor has to do that. So I go to Phan's, get my blood drawn and walk it over to the lab. That's how we do it.

Chemo next week. Wrapping up another cycle of maintenance.  Berenson early October.

Tuesday, September 15, 2015


That sound you hear is a bursting bubble. Every year I'm excited for the start of the football season and the Minnesota Vikings prospects. This year I've been more excited than usual. I think I'm more and more overwhelmed with how fast time is passing and how myeloma is a never ending battle... there are no seasons. And because of this, I get particularly focused on other non myeloma things. The Vikings for instance. Gracie and reality tv are a couple of other things. Anyhow, last night was Monday night football, week 1. The Vikings played and stunk up the joint. Such a disappointment.

Also of note, is that we raised nearly $500 from the pick em football league. Not bad. But I'll tell you this....I need a bigger event with more ooomphhh to raise some serious dough. Oh, after week 1, I finished 14th out of 19 teams. And both my fantasy football teams lost. I suck.

It's my off week from chemo, so I'm feeling good. I take revlimid at home on my off week and that gives me night time leg cramps. But other than that, all is A-ok.  My memory continues to worsen...chemobrain.

And that is all I got.

Tuesday, September 8, 2015

and here we go...

Tuesday morning. Back to work and back to chemo. It's cycle number who knows of maintenance chemo. dex, velcade, revlimid.

I had a nice long, 4 day weekend. Saw old friends, hung out, did normal regular Matt stuff. It was great. By 6 pm last night though, I hit the wall. I was all out of sustainable fuel and was pooped. Still pooped as I get ready for work. I need to focus on the great weekend I had with great people. And I need to not focus on the aches and creaks and tiredness that I'm going to have for the next several days.

All is well. Despite the new lab effing up my results (so annoying), my numbers look stable. Only tricky one is the creatinin, which continues to rise. This could be because I've added previously banned food to my diet. Back to the strict renal diet.

Wednesday, September 2, 2015

Monday, August 31, 2015

Another Cycle Down

Wrapped up yet another cycle of maintenance. Waiting for lab results. Berenson this Friday. Expecting all things to be stable. Tired as fuck. But that's normal. Within 10 pounds of my target weight. And the pull up challenge is on schedule. In one month, on my birthday, I have to do 10 pull ups. Starting at a base of ZERO.

And still looking for folks to join my NFL Pick Em Challenge. $50 buy in for the season. Half the funds go to our winner's pot and the other half goes to the Multiple Myeloma Research Foundation. You still have about a week to join.  My goal is 30 participants. We're about half way there. This week, I need to push and bug people. Fund raising ain't easy, but it's rewarding for shizzle.

Tuesday, August 25, 2015

Two Line Update

Yesterday I wrapped up the latest cycle of maintenance chemo, which means tonight I have dex induced insomnia.

Later this week, I do my 24 hour urine and give several vials of blood for my monthly myeloma labs, which will be followed by a Sept 4 Berenson visit.


Friday, August 21, 2015

Tackle Myeloma Pick Em League

Less than two weeks until the NFL season starts. But you still have time to join our Tackle Myeloma Pick Em league. Simply pick the winners of each game every week of the NFL season. $50 buy in for the whole season. Money is split between our league winners and the Multiple Myeloma Research Foundation.  Follow the below link to join. Password is bloodcancer

Wednesday, August 12, 2015

What About My Stuff

Today was day 1 of cycle 11 of my current maintenance regimin. A cycle is roughly one month. The current cycle was preceeded by 8 cycles of treanda/bendsmustine, which was preceeded by 10 cycles of maintenance, preceeded by 12 cycles of my initial foray into treanda after 3 previous drugs had no impact. Well you get the point, that's a lot of chemo.

But I feel good. I'm losing weight and working out harder. I'm coming up on 54 years old and I'd say I'm in good shape even compared to a non-cancer 54year old. Ego and narsicism keep me going. That and American Ninja Warrior, a tv competition show with incredibly fit people.  Say what you will, but the show has motivated me to kick things up a notch.

Re├žently, I've been cleaning out my garage, going through my stuff. I recall a hilarious George Carlin monologue about our "stuff" from the 1970s. Spot on.  Anyhow, I was able to toss or put in the yard sale pile a lot of stuff. However, there some things I can't part with. My stacks of game programs or magazines with the Vikings on the cover or some other game or athlete...from decades ago. I have shot glass and casino chip collections that I can't part with. There are random memory filled nick knacks that I want to keep.

But for what? What do I with them? What happens when I die? Do I specify these things go in my coffin with me? Note: I really need to do a will. One thing I will absolutely specfiy is that my ashes are buried alongside the Mississippi River that bisects the Twin Cities in Minnesota, St Paul and Minneapolis. This is a must.

I mean it though. What do I do with my stuff that I want to hold on to but don't even see on a regular  basis. Do I schedule stuff visits? Don't get me wrong, I plan on being around a long time. But as a myeloma patient, I know that things can change and turn for the worse very very quickly. That mental cloud and the rigors of constant chemo and treatment put myeloma  patients in a precarious state. I know folks who have survived much longer than me and folks who haven't. At 4 plus years, I'm getting to be a surprise old timer. Looking at my condition and numbers from year one, you'd never have thought I would still be here. Some would say I am playing with house money..a gambling reference when a bettor has done so well and set aside enough winnings that going forward the bettor has nothing to lose. It's house money, i.e. the casino's money. It's a great position to be in.

So... What about my stuff? Furthermore, does it matter what I drive or what I wear or what I say? Do I have carte blanche to do whatever I want? Straddling life, death, fatigue, energy, work, home, living is a juggling act.When people ask what I did last night or over the wekkend or what I do in my spare time, I find this hard to answer. Here's what I do. I work, I go home, I do chemo, I see a lot of doctors, I rest, go to the gym and that's it. Spare energy to do anything but these core activities is limited. Not really super fun or a great conversation topic. Leslie suggests I just tell people exactly what I did or plan to do. Perhaps. 

So it's all about my stuff, literally and figuratively.

Sunday, August 2, 2015


51 months since my myeloma diagnosis.

Saturday, August 1, 2015

Football Pick em and the MMRF

It’s just about football season.  Excitement is in the air.  I’m super confident that this is the year the Vikings win the Super Bowl.  You heard it here first.

I’ve created a football pick em league this season. Each week, you simply pick who you think the outright winner of each game will be. No point spread. You do assign a confidence ranking… typically 16 to 1, with 16 being highest confidence.   Buy in is $50.  Half of the funds collected go the Multiple Myeloma Research Foundation, obviously an organization that is quite important to me.  The remaining funds go to weekly winners as well as season ending top 10.  I can’t say how much until we have everyone signed up. My goal is 100 participants.

You’re invited to play.  It’s fun, for a good cause and you can win some money.   Instructions for joining are below. Feel free to share with anyone who might be interested.
  Welcome to Yahoo Sports Pro Football Pick'em.
To join this group, send them the Group ID# (2701) and the Password (bloodcancer). Remember, it is the Group ID#, not the group name, that other people must use to join your group.
You are now ready to participate in Pro Football Pick'em. Your goal is to earn more points than other people by selecting the winner of each of this year's games.
Thanks for joining. Good luck.
-- Pro Football Pick'em Commissioner

Wednesday, July 29, 2015

Leukemia and Lymphoma Society First Connection Program

The Leukemia and Lymphoma Society has a number of great programs. One is their First Connection program. It connects newly diagnosed patients with someone who has similar experiences with the same cancer. Tonight was my first training to be a First Connection Volunteer. Soon I'll be off and running. When a newly diagnosed myeloma patient calls the LLS,  I may be provided the patients contact info. I'll have one or two calls with the patient to provide support, listen and share my experience. It's a great program and I'm excited to participate and give back.

Also this week, I did my first myeloma twitter chat in partnership with WeGo Health. It's an hour Q and A, where fellow patients share information or answer questions. My job as host was to pose the questions and keep the discussion moving forward. It was fun and interesting and I hope to do more in the future.

Day 15 of the current chemo cycle was yesterday. Tomorrow I do my 24 hour urine collection and give several vials of blood. Next week Berenson.

The good news is that creatinine is back down to 3.3. and hemoglobin is up to 11. Both good omens for positive news with my myeloma numbers.

And that's my story.

Monday, July 27, 2015

Tuesday July 28 Twitter Chat

Don't forget Tuesday July 28 at noon west time, I'm hosting a twitter chat to discuss the patient experiences of multiple myeloma, an incurable blood cancer. The one hour event is presented by Wego Health. If you want to participate, follow along or ask a question, simply follow this link or use ‪#‎HAChat‬

Friday, July 24, 2015

Myeloma Chat on Twitter Tuesday July 28

On Tuesday July 28, at noon o'clock west coast time, I'll be hosting a twitter chat to discuss myeloma and myeloma challenges.  To participate, ask questions or follow along, just use the hastag #HACHAT.  WEGO Health is putting the chat on. The chat will be for an hour. To make things even easier, you can simply use this link:

Diet flexibility

Saw my kidney doctor this week.  Everything good with the kidneys. In fact he loosened up my dietary restrictions.  I can have a little bit of dairy now and again. One of my favorites: apple sauce and cottage cheese.  Haven't been able to have it in over 4 years.  And, bam! Here it is. 

Wednesday, July 8, 2015

Hit the Wall

It's been a while since I've wrote anything substantial. Just haven't been feeling it. There's nothing really noteworthy with my myeloma. But noteworthy is a relative term. And that's the thing with myeloma. Nothing going on doesn't mean we're kicking back worry free. In the past two months, I had a nasty cold that verged on pneumonia and hospitalization. We beat that back, avoiding the hospital, after finding an awesome pulminologist. I'd be lying if I said I didn't spend one night in bed wondering if that was my week to die. Then I lost a good friend to myeloma. Brad passing away is a tough one to move on from. Then I've had an achy back for a couple of weeks. Normally we'd let it go. But given I have myeloma, I've had to do a full body skeletal survey and bone density test. This Saturday is an MRI. Mind you, I'm claustrophobic, so this should be interesting. Also note, that my myeloma impacts my kidneys, I haven't had any bone involvement but the question is has my myeloma morphed into something else. Berenson thinks no and that doing bone surveys, etc is unnecessary. Phan on the other hand says we need to err on the side of caution. I am guessing it's nothing but we gotta rule bone issues out. And then this week I've been tired as all hell. It's a tired that is similar to the tired I was feeling right before I was diagnosed. So I'm thinking, ah shit, time to get off maintenance and attack the myeloma with one of the new drugs. But we did my full myeloma labs this week and all my numbers remain stable. That's good.  However I am hugely anemic, almost anemic enough to warrant a transfusion. I haven't had one of those in two years. Instead, yesterday I got a Procrit shot to bring my hemoglobin up. And through all this, I'm working full time, working out, crushing it and living life. Easy?  Heck no.

The summary: I'm still on maintenance, everything remains routine. A new cycle of maintenance starts next week.  All is good. But it's been a scary, nerve wracking, emotional, wall hitting month or two.

And that's myeloma. It never totally goes away. Every day, every week, every month is a challenge and a victory.

Thursday, July 2, 2015

Sunday, June 21, 2015

Happy Father's Day

I'm waiting for Gracie to make me breakfast.  Might not happen.  Damn dog.  Anyhow, I'm good.  Started up the latest cycle of maintenance the other day.    Not much else to report.  

Side note: two years ago I bought two seats from the now demolished Metrodome, where the Vikings played.  Seth and I were at the second to last Vikings game in the dome. Leslie's brother made a cool stand for the seats.  Check it out. 

Friday, June 12, 2015


7 minutes of your time is all that is needed to watch this absolutely beautiful short film.

Sunday, June 7, 2015

#Bradstrong forever

rest in peace brad coustan. you and your family have been a beacon for me. 

Saturday, June 6, 2015


Today is a complete do nothing day. I've got to be serious about health and recovery.  Here are some of my supplies. 

Friday, June 5, 2015


Today I returned to the pulmonologist. When we saw him the other day it was me and Leslie. Today it was just me. I went straight from work. His first question wasn't how I was doing? It was, how's my wife. He then told me how wonderful she is, that she is an amazing caregiver and caring person and I was lucky to have her.  All true.
Leslie has been with me throughout my 49 months of myeloma. Taking care of me, talking to doctors, driving me around, giving me shots, encouraging me and on and on.  Being a caregiver is a tough job.  In many ways, I think cancer is tougher and scarier on the caregiver and loved ones than it is on the patient.  
We had a scary week this week. It was a real reminder to me that I'm dealing with something serious and I can't get lax about things.  When I woke up Monday night with trouble breathing, Leslie jumped to action...nursing me back to a level of comfort.  Tuesday, if I had been up to me, I would have stayed home, not seen the doctor and talked/lied my way into having chemo.  Leslie said no to all that. She took me to Phan, took me to a pulmonologist and to the lab.
Long story short. Leslie was right. I had a close call this week. I'm better. Not 100%, but better. I and we are fortunate to have our caregivers and are loved ones.

Thursday, June 4, 2015


Pat Killingsworth, a myeloma advocate, mentor & friend, recently wrote me that uncertainty wears us down. So true. This week was my 49th month. I wrote about that. But this week I was also pretty sick. It's likely just a virus. Our immune systems are comprised, so any cold, virus or whatever has to be handled immediately. Monday night I was coughing, wheezing, achy, and I had trouble breathing. Leslie and I did what we could do to clear me up.(vapor, steam, etc)  For a minute, we considered going to emergency to get me checked in.  Leslie called Phan Tuesday morning and his first suggestion was hospital. F that. I hate the hospital.  Tuesday we saw Phan, a pulmonologist, did blood work, chest xray, and cancelled chemo. We needed to make sure it's not pneumonia or some sort of infection. I have been sweating a lot and at random times....which was one of my early symptons. That worries me a bit.

Monday night, between hacks, I did have thoughts that this might be it. For a minute there I wondered if I'd make it to month 50. Actually I wondered if I'd make it to Friday.  I'm fortunate that I'm doing as well as I am. My first year was real touch and go. But for last two years, I've been on cruise control and living a normal life (putting aside constant fatigue, chemo, blah, blah, blah). But there is that uncertainty that Pat mentions. It's like having a month to month lease. 

It's a wake up slap when a hiccup happens. So far no phone calls regarding my tests.  That's good.  I'm feeling much better. I'm on antibiotics and two different inhalers. I was back at work today and I'm back to normalcy (whatever that is)

Monday, June 1, 2015


Tomorrow is June 2, 49 months since my myeloma diagnosis.  I'm bringing things full circle. 49 was Ed Marinaro, who played for the Vikings from 1972 to 1975. He played in two Super Bowls for the Vikings.
He played college football at Cornell and was runner up in the Heisman Trophy voting in 1971, a huge accomplishment for an Ivy League football player. He led the nation in rushing his junior and season seasons.He played 27 games for Cornell, 1969-1971, and averaged 174.6 rushing yards per game. Marinaro had 10 games in which he exceeded 200 yards; this includes, in 1969, 245 against Rutgers, 281 against Harvard; in 1970, 260 against Lehigh; in 1971, 272 against Columbia, 260 against Colgate. In 1971 his average was 209 a game, an NCAA record that lasted 10 years. That year he led the nation in scoring, rushing and all-purpose running. He was all- America twice and in 1971 won the Maxwell Trophy and was named Player of the Year by Columbus, Cleveland and Washington Touchdown Clubs. I'm gonna say it, he should have won the Heisman Trophy.
 After finishing his career, Ed played the role of Officer Joe Coffey on Hill Street Blues for several years.

Why Ed Marinaro you ask? Full circle, you ask? Way back in the early 80s, I lived with my Uncle Jan and my best friend John in Santa Monica. I was just a young pup. Jan had a friend, Debbie, who became my friend.  I've written about Debbie before. She was the first person to talk to me about myeloma. She was diagnosed a couple of years before me. She told me everything would be ok. I hadn't talked to Debbie for many years when she contacted me back in May, 2011.  Debbie went to Cedars Sinai for her treatment. When her myeloma got tricky, her doctor sent her to Berenson. I'd see her at Dr. B once in a while.  After not seeing her for several weeks and leaving her a number of voice mails, my suspicions were raised.  Shortly thereafter, a friend at Dr. B's office confirmed my worries, that Debbie had passed away. Heartbreaking.

Anyhow, to lighten it up..Debbie had a friend, Lisa Frazier, who was several years older than me. Lisa worked for Charles Schwab, was blond, funny, and drove an old TR7. So cool.  Anyhow, Lisa and I dated for a short while. In her apartment she had a couple of pictures with two celebrities who she had dated. Tony Danza and Ed Marinaro.  As a truck driving 20 year old snot nosed punk, who was on a break from UCLA, these photos were a bit intimidating. This was one of those times in life when I truly felt I was out of my league. 

Even though we stopped dating, we remained friends. I saw Lisa once after I went back to school. But that was it. Debbie told me she talked to Lisa once in a while.   

So that's my 49th month.  Today I have a cold and I'm so fricking pissed about it.  Worked half day so I could come home, sleep and knock that shit out.  Tomorrow is the 15th day of the current chemo cycle. Last time I was sick, Phan made me delay chemo for two weeks. That was not ok with me. And if I have to miss tomorrow because I have a cold, I'll be seriously unhappy.

Other than that, all is good.

Friday, May 29, 2015

An Update without an Update

I haven't posted in a while. Don't worry...everything is good.  I'll post a longer update in a few days.  For now I leave you with this picture...

Tuesday, May 19, 2015

A short myeloma update

I had my monthly Berenson visit yesterday. I usually go on Fridays, but because of schedules, I went on a Monday. Wow....Monday's are super crowded at Dr B's.  I'm  good. Numbers are stable, My myeloma and kidney labs look good. So we continue with maintenance. The latest cycle of maintenance begins today. Work, gym, chemo today. WGC.  Talked briefly to Dr B about skin cancer. He said that yes it can happen...thanks to velcade and a lowered immune system. But he said not to worry, it's no big deal.  Ummm.....ok. I guess every once in a while we'll remove something from my skin. He also mentioned that medical schools aren't getting the best and brightest. Apparently it's difficult to get youngsters to pursue medicine. The reason? Being a doctor is not a money making profession. And that's it. Short visit. Always a good thing.

Thursday, May 14, 2015

Arghhh. How do we describe our disease.

I've put a lot of thought into the meaning and impact of Tom Brokaw making the talk show circuit to discuss his battle with multiple myeloma and to promote his book. Maybe I've put too much thought into it.  He says he wrote the book to help other families who are faced with the harrowing diagnosis of cancer.  I have not read his book, so I can't really speak to it.  I did watch his hour long show on Dateline and now have watched him on the Daily Show and Jimmy Fallon.

Before I write anything else, let me say that this is a total brain dump.  I'm torn. It's awesome that he is raising awareness for MM and bringing attention to the disease and its impacts. That's all great.  But for crying out loud, please Mr Brokaw describe the disease and your challenges accurately.

You know when you are thinking about something and you're not necessarily bothered by it, but as you think about it, you convince yourself that you are pissed.  I'm debating in my own head if I'm really bothered by his inaccurate description of the disease or if I've bothered because it's part of my shtick.  Maybe my feelings are hovering somewhere between ambivalence, righteous indignity, inspiration and envy.

On the Daily Show, Jon Stewart called MM a back cancer. Brokaw agreed. On both Fallon and the Daily Show, Brokaw says he is in remission and leaves it at that. On one show he quickly mentioned maintenance chemo.  But come on!!  We all know that myeloma is a cancer that keeps on giving. It's not curable. Maintenance chemo, while easy in the scheme of things, is still chemo. Our immune systems are crap and getting an infection is something that a MM patient really needs to avoid.  He never mentions the struggles of fellow patients. He never indicates (again I haven't read his book) that the inspiration and motivation and support from fellow patients is absolutely the most amazing gift from this disease. I've gotten to know some fantastic people.  But thousands and thousands of people die every year from the disease. Remission, partial remission, complete response, partial response.... all something we desire.  But achieving these goals by no means is a green light to kick back and not worry that any day or any month could be when the myeloma kicks back in with a vengeance. 

To me, if Mr Brokaw were to talk about all the challenges he still faces, while he still is living life, raising awareness and doing what he does...this would be a much more powerful and inspirational message.

I'm fortunate.  But I know others who are really facing challenging circumstances right about now.  A mention of the thousands who are struggling would be helpful.  I think what makes myeloma challenging (just speaking about the cancer I know) is that years go by and we are always dealing with it.  People around me forget.  I look fine, I act fine, blah, blah, blah.  I get a week break between my chemo dates. Those weeks are heaven. I work out, I stay up late(r), and there are times during that week off that myeloma doesn't really come to mind.  But I can honestly say, there is probably a moment every single day when I lean back in my chair and have this overwhelming tiredness that feels quite different than tiredness I felt before catching cancer.  It's a tired that comes from deep inside my temples, like they want to squeeze my eyes shut.  Hard to describe. But it passes and I move on.

So, back to the topic at hand....I know during a several minute interview that Tom Brokaw can't say all this. But please, I wish he would at least say what the cancer is more accurately and what his challenges are now.  Put me on Jimmy Fallon and I'll talk about the disease and play beer pong with Jimmy. I jealous or envious that I'm not getting attention for meeting my challenge? Maybe that's it.  Who knows.

One last thing,  I don't go around telling people about my cancer and what I'm dealing with. As I was writing this, a friend sent me a text saying that perhaps Brokaw doesn't want pity. He wants to portray strength and that's what he is showing people.  The myeloma won't get him down.  That alone is a great message and inspiring.  I get that. Maybe I'm totally off base with my complaints. I better rethink my message.

Anyways, that is all I have.  Please feel free to respond.

Tuesday, May 12, 2015

Face on Fire

One of the pleasantries of myeloma are the side effects and other things that pop up due to a lowered immune system.  Last year I had a minor procedure. A few months ago, I had a skin cancer removed from my arm.  Now, I'm being proactive with stamping out pre cancer on my forehead. For 3 nights I'm using a gel called Picato. Last night was day 2.  One more night. Today my face is on fire.  

Sunday, May 10, 2015

Tom Brokaw and Multiple Myeloma

In case you missed it, here is the link to Tom Brokaw's dateline episode in which he discusses his multiple myeloma.

Wednesday, May 6, 2015

Tom Brokaw on Dateline Thursday May 7 NBC 10 PM

Recall, a couple of years ago, I almost had my moment of fame. The show Inside Edition contacted me to see if I could come in and do an interview to discuss my experience with myeloma and what Tom Brokaw might be facing. He had just been diagnosed. Leslie and I went to their office/studio and I was filmed and interviewed. We let everyone we know that I was going to be on tv. And? They cut me out. Those Inside Edition bastards.  They had a 10 second clip of a phone interview with Berenson. I guess that is too be expected.  Last year when I was fund raising for Berenson's research institute, I did try to guilt the folks into donating, but they didn't fall for it.

Anyhow, Tom Brokaw has a new book out discussing his myeloma experience.  The way it's being portrayed by the press is that he's cured and that's why his book is out.  Tomorrow night, he'll do an interview on the news program Dateline on NBC. I'm a little torn. I don't really want to watch it, cause I'm concerned they will sugar coat what myeloma is really about. Hopefully Mr Brokaw will discuss the fact that myeloma is incurable. It's likely he'll relapse at some point. And that even being in remission doesn't mean you're not still taking meds and doing lab work and all that. If I can be's not fun. It sucks. It's a constant challenge. BUT it's manageable and treatment options have come a long way in recent years.

I'll watch the interview and I suppose I recommend we all watch.  But I'm watching with low expectations. We'll see.

Tuesday, May 5, 2015

4 Years Plus 3 Days

With the glow of my 4 year celebration fading, it was time to get back to business. Today I wrapped up the latest cycle of maintenance chemo.  The nurses at Dr Phan's office got me a carrot cupcake. Loved it. I'm a big carrot cake fan. I've said it before and I'll say it again, one of the unexpected benefits of the cancer journey is growing close with my nurses and other medical folks. Without them, not sure the journey would be doable....both mentally and physically.

Anyhow, Friday is my monthly labs, followed by a May 18 Berenson visit, then followed by the start of another cycle on May 19.  Routine.

Sunday, May 3, 2015

The Latest from Pat Killingsworth

If you have a couple of minutes, take a look at the latest post from Pat Killingsworth. It speaks to what goes through many a myeloma patient's mind.