Tuesday, April 28, 2015

Tick Tock

Coming up on 4 years (48 months) since diagnosis. The only thing I can guarantee is that I will NOT represent the number 4 with a picture of Brett Favre.  All he had to do was fall down and the Vikings would have been in the Super Bowl. Simple.

Monday, April 27, 2015

Mike Katz

I never met Mike Katz. He lived 25 years with myeloma.  Follow the below link to Pat Killingsworth's blog to read more.

http://multiplemyelomablog.com/2015/04/myeloma-legend-mike-katz-has-died.html

Tuesday, April 21, 2015

Albuquerque

Been an eventful, uneventful month. I had a nasty cold a couple of weeks back, forcing me (Dr Phan) to postpone day 1 of my maintenance chemo. As much as I hate getting off schedule, I agreed with the doctor and Leslie that doing chemo while my immune system was fighting the virus would not have been a good idea.  Then last week, I couldn't do chemo because we were traveling to Albuquerque and I didn't want to feel like crap on the trip.  Yes....Albuquerque. More on that in a minute.

Today I got back on schedule, we did day 1 of this latest cycle. This means I was off chemo for a month.  This month off came on the heels of Dr Berenson telling us a drug break was a no no....that my myeloma, while stable, might aggressively kick in.  I'm pretty sure, Berenson was referring to a few month break.  Phan assured me that the extra two weeks off was no big deal.  And I must say that I feel spectacular with a month of no cancer drugs being put into my system.  But I must also say that I was pretty anxious during this time off.  Phan had me do complete labs last week to give me a peace of mind. The numbers came in and still stable. And now we're back at it, which I'm glad about.

So, Albuquerque.  Since Breaking Bad, I've had a bit of an obsession about Albuquerque.  Well it turns out that Leslie's oldest and bestest friend Marissa's sister lives in Albuquerque. So me, Leslie, Marissa, her husband Jace (who's been super supportive since I was diagnosed (fyi..May 2 is 4 years), and their son Ryan traveled to see the sister, Lisa and her husband Bernard. The nicest people. Side note...Bernard was a Lt Colonel in the Air Force and has an tremendous collection of awards, certificates and the like.  We flew out last Thursday. On Friday we did our own self guided Breaking Bad tour. So much fun.  We saw a total of 11 different locations from the show.  The visit motivated me to rewatch the show.  Started up during chemo today and got through the first three episodes.  The whole weekend was terrific.  Great people, great laughs, just plain great trip. But i feel like there is so much more too see and that we need to go back.  

While there, I tried to meet up with a fellow myeloma patient named Ken.  But we screwed up by not planning ahead.  I went by the coffee house where he works and arrived 50 minutes after they closed. I found out later that he had actually been inside when I came by.  Oops.  I think Ken is about my age and was also diagnosed around 4 years ago.  He's also a little tired of thinking and talking about myeloma. So it would have been good to meet up and talk about what we don't want to talk about.  Next time. 

Had a visit with the dermatologist this morning. I need to use a cream on my forehead to prevent some pre skin cancer spots from turning into cancer.  I think the cream is going to give me a nasty looking forehead for a couple of weeks.

Lastly, if you don't alread, you should follow Brad Coustan's and Pat Killingsworth's blogs. Both are sharing openly and honestly their difficult journeys as well as their awesome spirit. I have no doubt that they're both on the road to being better than ever (to borrow from Brad's recent post)

Below are a few photos from the trip.  You might recognize some of the spots.

Be well everyone!  Matt







Wednesday, April 15, 2015

Victor and Olivia Present....

Take a look at the latest from Brad Coustan aka Bradstrong. He has a truly awesome family.  I continue to be impressed.  If you happen to be in the NY/New Jersey area on May 15, I strongly recommend you attend this event.

4/15/15 – Victor and Olivia Present …


For their Bar/Bat Mitzvah projects, Victor and his friend Olivia Roth organized an ENTIRE event to raise money for the MMRF.  The fundraiser is a special, opening night, private screening of the highly anticipated movie PITCH PERFECT 2, on FRIDAY MAY 15 at the RIALTO THEATRE in WESTFIELD, NJ.
Please see the attached flyer to purchase your tickets or make a donation to these kids’ project.  Hurry and act now, tickets ARE limited and we know you don’t want to miss this one.
We (The Roths and the Coustans) couldn’t be more proud of our children for the idea and the execution for such a great cause!
CLICK HERE FOR FLYER:  BRADSTRONG Screens Pitch Perfect 2[1]

Friday, April 10, 2015

Turning Bad into Good

You might have heard the recent story of Elizabeth Sedway, a multiple myeloma survivor, and her family getting removed from an Alaska Airlines flight because she indicated she sometimes get weak and needed extra time getting on the plane.  They were returning from a family vacation and after already being in their seats, they were taken off the plane, under the guise of the airline looking out for her well being. Alaska Air called a company called Medlink, talked for two minutes and over the phone decided that Elizabeth should not be allowed to fly home without a doctor's note. Since this incident, Alaska Air has released a couple of statements that do nothing but highlight how they completely overstepped.

The silver lining and most impressive thing is that Elizabeth, a UCLA graduate, and her family have been gracious and have taken the high road. They have used this opportunity to raise awareness of multiple myeloma and raise funds for research & support services via the Multiple Myeloma Research Foundation.  In fact Elizabeth has donated her refund from Alaska Air to the MMRF.  If you are so moved by this recent incident and the Sedway's response, below is a link to a donation page created on the MMRF website.  Thanks!

http://www.themmrf.org/sedways/


Wednesday, April 8, 2015

The Only Thing I Can Control is My Attitude

Cool Short documentary on Daniel Rodriquez, who after his cancer diagnosis, took up base jumping and wing suit flying. Check it out:

Grantland Features: ‘Flying From Cancer’ «

Monday, April 6, 2015

Wilbur

This is Wilbur. He was adopted by my friend John and his family in the San Luis Obispo area.  It's a happy feel good picture.

Sunday, April 5, 2015

#Bradstrong

Brad Coustan is a great friend and inspiration who has been challenged during his myeloma journey. But he's bouncing back. I've provided a link and copied his latest post. He and his family are quite remarkable.

http://bradstrong.me/2015/04/05/4515-seder-and-other-stuff/comment-page-1/#comment-5180

4/5/15 – Seder … and other stuff

My first venture outside the house other than to a doctor’s office was Friday night for Seder at Helene’s parents.  It was a lot of work for me.  First of all, I am only two and one half weeks from being discharged from the hospital from the pneumonia.  Secondly, that time of day (between 5 and 8 PM) is really my witching hour.  It is when I am at my worst as far as fatigue goes.
Passover, though, is my second favorite holiday next to Thanksgiving.  I had to be there.  AND … I had to prove it to myself that I could make it through.  I did, although I had to get up from the table a couple of times and rest on the couch.  The worst part of that was that I got up right before singing (which is my forte and Passover role every year) and nobody picked up my lead and led the group in Dayenu in a round.
I will say … I am very HAPPY I went.  I almost didn’t go.  I don’t really want anyone to see me in a weak state.  I am thirty – that’s right 30 – pounds lighter than normal weight.  At least it’s not as bad as when I first came home from the hospital and it was FORTY pounds.  The other reason I was happy is that I love my family so much.  Helene, the kids, Helene’s parents, Helene’s sisters, their husbands and kids and my brother his wife and kids.  If I were allowed to hand pick a family I couldn’t have done any better.  Our Uncle Les and his friend Joyce.  Their love and support has remained steadfast during the most difficult time in my life.
The Cancer numbers are GREAT.  The pneumonia almost killed me.  I faced death because my weakened immune system couldn’t handle the pneumonia.  Now?  Now I am rehabilitating my body.  Working on my endurance and stamina and trying like heck to get some semblance of muscle tone back so that I can go forward as #bradstrong on that MMRF video.
Yesterday and today (so far) have been tough.  I am coughing a lot and am really out of breath and short on stamina.  I think it is from the blood pressure medication the doc prescribed me.  He said one of the side effects would be coughing.  I have never, EVER had high blood pressure until now.  My heart is working so hard to keep up and pump oxygen into my body because my endurance is still so low.  I am getting there.  Today I feel a little better.  Last night I had no appetite.  Today I am eating again like a horse.  It is a beautiful day in New Jersey so I am going to try to take a walk outside if I am up for it later.
I hope that whatever holiday you celebrate (Passover or Easter) it was a good one.  I hope that you spent it with family and close friends.  People that you love and support you UNCONDITIONALLY.  I once heard George W. Bush speak at a conference.  Politics aside, he said something that has stuck with me since hearing it.  He said “UNCONDITIONAL LOVE MITIGATES RISK.”  That’s one of the things his father taught him.  If you fail, I will still love you.  Keep trying.  Keep at it.  I have a support network – a family that loves me UNCONDITIONALLY.  It makes it really easy to battle when you feel that support.  There is no RISK.  You just live each day.  Fight each day.  Do your best each day.  In the end, Cancer may get me.  I don’t think it will for a long time, but if it does?  I know that I wasn’t afraid to face it – to fight it – because I had that UNCONDITIONAL love.
Enough rambling – Happy Easter.  Let’s go fight Cancer today.

Saturday, April 4, 2015

doctors are funny

Yesterday was my monthly Berenson visit.  I got most of my lab results the day before. Most. We were missing the upep, which represents the paraprotein or bad protein in my urine.  It's a percent of my total protein output over a 24 hour period.  I've had problems in the past with the lab screwing this one test up. They've been doing good lately, so I wasn't too worried about it. But when I saw the % wasn't there, I called my contact at the lab. She told me that she had been out for a couple of months on medical leave and that while out the lab didn't order some of supplies needed to run the upep test. What? If one person is gone, a lab can't do what it's job is?  Very curious. Fortunately all my other numbers looked great. Kappa light chains lower than they've been in a long time. So no changes to my regimen. All good.

I've been battling this pesky cold. Not myeloma related.  Berenson said I need to be on some antibiotics so it doesn't get out of hand. Definitely with a compromised immune system, I need to knock this shit out. He told me to ask Phan to write me a prescription. We called Phan's office and he was out for the day. So we asked a nurse at Berenson to ask Dr B if he could write a prescription since Phan wasn't around.  Dr B said he didn't feel comfortable writing it, that my primary doctor should.  Ummm... Berenson prescribes hard hitting chemo drugs but wouldn't prescribe an antibiotic? Weird.  So one of Phan's nurse tracked Phan down. Phan talked to Dr B and then Phan wrote the prescription. It reminded me of when I was first diagnosed how bleeping hard it was to get various doctors to communicate with each other. Anyhow, I got the antibiotic and I'm now relaxing to get over this cold. Tuesday is chemo and I don't want Phan delaying it cause I'm sick.

We know how I am with routines and missing treatment.

Thursday, April 2, 2015

Dan Odegard




Dan Odegard passed away Tuesday.  Dan and his partner Tib are friends with my mom. When I was first diagnosed, Dan was the first to contact me.  He explained to me what to expect, honestly and not necessarily glowingly. I was scared and lost, and not necessarily open to the help and guidance that Dan was offering. For that, I am ashamed and have a huge regret.  Dan and Tib live in Minnesota, which as we know is my favorite state.

Over the past few months, Dan and I were exchanging emails. He wanted to know how I was doing. I wanted to know how he was doing.  How Dan and Tib handled and prepared for this moment was so inspiring and beautiful. Over these past few months, I came to regard Dan as a close friend, a mentor and a role model. He was an amazing person and I miss those emails already.  It's a sad day.

He went on his terms and that's all you can ask.

If you watched the recent Vice episode on HBO that discussed the measles trial, Dan was part of this trial. He and Tib were in the show.

Tib as well is an amazing person. Humor, grace and honesty.  The other day, Tib posted the following on Dan's Caring Bridge site. Please give it a read.  Have a tissue handy.

Dear friends,
Pete is sitting by Dan's side, reading to him in the hospital bed that was delivered yesterday. Early Sunday morning Dan started to develop a fever, and began to decline quickly. I remember writing about our brave little band five years ago - gathering with love, warmth and humor to support Dan and each other. Yesterday, we celebrated his 'present moments' and were gentle guardians and comforters during the confused ones. Through word or expression he let each of us know of his love.
Time now seems suspended - Saturday night at 9:30 we were doing dishes and chatting together companionably, . This is what we wished for - all is well. Not easy, not always tidy, but whole and loving.
Pete is reading from a book of essays by E.B. White. He read this line: "A person who is looking for something never travels fast." It struck me that Dan is traveling at just the right speed, taking the time he needs, giving us the chance to care for him in this deeply personal way, giving us time with each other.

I looked it up. The line is from Stuart Little. Google sent me to the website of a law professor named Douglas O. Linder. I liked what I found.

(Bear with me here.)
At the end of the book, Stuart comes across a telephone company repairmen:
"Which direction are you headed? [the repairman] asked.
"North," said Stuart.
"North is nice," said the repairman. "I've always enjoyed going north. Of course, south-west is a fine direction, too."
"Yes, I suppose it is," said Stuart, thoughtfully.
"And there's east," continued the repairman. "I once had an interesting experience on an easterly course. Do you want me to tell you about it?"
"No thanks," said Stuart.
The repairman seemed disappointed, but he kept right on talking. "There's something about north," he said, "something that sets it apart from all other directions. A person who is heading north is not making any mistake, in my opinion."
"That's the way I look at it," said Stuart. "I rather expect that from now on I shall be traveling north until the end of my days."
"Worse things than that could happen to a person," said the repairman.
"Yes, I know," answered Stuart.
"Following a broken telephone line north, I have come upon some wonderful places," continued the repairman. "Swamps where cedars grow and turtles wait on logs but not for anything in particular; fields bordered by crooked fences broken by years of standing still; orchards so old they have forgotten where the farmhouse is. In the north I have eaten my lunch in pastures rank with ferns and junipers, all under fair skies with a wind blowing. My business has taken me into spruce woods on winter nights where the snow lay deep and soft, a perfect place for a carnival of rabbits. I have sat at peace on the freight platforms of railroad junctions in the north, in the warm hours and with the warm smells. I know fresh lakes in the north, undisturbed except by fish and hawk and, of course, by the Telephone Company, which has to follow its nose. I know all these places well. They are a long way from here--don't forget that. And a person who is looking for something doesn't travel very fast."
"That's perfectly true," said Stuart. "Well, I guess I'd better get going. Thank you for your friendly remarks."
"Not at all," said the repairman. "I hope you find that bird."
Stuart rose from the ditch, climbed into his car, and started up the road that led toward the north. The sun was just coming up over the hills on his right. As he peered ahead into the great land that stretched before him, the way seemed long. But the sky was bright, and somehow he felt he was headed in the right direction."
Linder writes: [North, indeed, is a good direction--maybe the best--, but this passage is really about the importance of having a directed life, an openness to the wonders of the world, and--in spite of the evidence--a certain optimism.]

He has just described Dan perfectly.

An old euphemism for dying is "going west". West is good, but in my heart of hearts I believe that Dan is going north.

47 Months

Today is April 2. 47 months since my myeloma diagnosis. Going strong.

Wednesday, April 1, 2015

Unacceptable

In one month and a day, I'll hit the 4 year mark since my diagnosis. I'm on my maintenance routine. I do chemo one day every other week. It's a short session...2 hours.  For about 4 days following chemo, I'm on the dreaded dex roller coaster. Sucks.  But the every other week that I'm not doing treatment, I feel great.  Energy is up (considering I'm always low on hemoglobin), I work out, I work, I started guitar lessons, I laugh a lot, I can stay awake past 8 pm (sometimes) and life is pretty normal.  I can handle this no problem.

 I do get twinges of guilt when I hear about friend's struggles and challenges with the disease. Doesn't really seem fair. I've been pretty fortunate. Mind you I know it can change at any time. But I'm doing everything I can to keep my immune system humming along, keeping the myeloma at bay.

Meanwhile, I've accepted what myeloma means and what my fate could be. I think I've become much stronger in this regard. I've learned a lot from watching others.  But, and this might sound odd, I think being in my routine and having a fairly normal life has lulled me into having a sense of security that I'm going to beat this and will continue with my routine for decades.   But, and here is the weird part, there are times I'm not sure how I feel about going forward with this massive unknown hanging over me, while I whistle through my routine. I'd prefer things be more black and white. Like why can't someone say that in June of 2019 I'll relapse and be unable to find a drug that slows my myeloma. It would give me a target. A goal. Something to aim for. I'm probably not making any sense. In my head, it makes sense.

I don't blog very often. Not much to say. And part of it is that I've been lulled into this sense of security. Like why blog about myeloma if I'm not impacted by it. (although by writing this, I'm probably jinxing myself. Not like a Robert Durst jinx...but a jinx like it's better not to say something, cause it will come back to bite me). Also, I don't blog much, because I don't want questions about the myeloma and I don't want people asking me about something I wrote or how I am doing.  Let's pretend it doesn't exist. Ironically, I also get a little perturbed when people don't ask me how I'm doing for an extended period. WTF, don't they know I have an incurable cancer. Ask me how I'm doing for crying out loud. Check in with me once in a while. Wait...don't ask me, I don't want to talk about it.

My routine is what allows me to keep going and put the myeloma on the mental back burner. Last summer I had that minor surgery that kept me in bed for a couple of weeks. That wrecked havoc on my routine and challenged my mental fortitude. This week, my off week, I have a slight cold. Enough of a cold that I left work early today so I could sleep and recuperate quickly.  This cold has thrown me off me routine. It's a slap against my routine. It gets my mind whirling, thinking that yeah, if I get truly sick in the future, that it's going to suck and I might not be as strong mentally as I thought. I hate being sick. It's unacceptable. I particularly hate being sick with something other than myeloma. I don't have time for this. I can't handle it.

When first diagnosed, I was really concerned that going forward the cancer would define me. That frightened me.  Recently I reconnected with my cancer coach and I told her that I'm now ok with the cancer defining me. And that I feel like I need to do more to give back to the cancer community. Up until this recent exchange,  I've always agreed with her. But this time I didn't. She told me that since I'm so enmeshed in myeloma and cancer, that I need to find things to think about and do that have no relation to cancer. She used an analogy of how a lifeguard can't save someone else if they haven't ensured their own safety first. Not so fast, my friend. For whatever reason, I've been given this opportunity. Every day I save myself . So it'd be selfish to put blinders on and just worry about me. I'm a speck and have had a good life and have been pretty self focused for ages. Enough about me.

I'm rambling and I haven't even had any cold medicine. I'm not sure what my point is here. Thankfully myeloma has turned into a marathon. But I still need to live for the now. I still need to not get sucked into not throwing caution to the wind. Let it fly, cause you never know. Oops, don't let it fly cause I have decades to go.  This is some whiny shit that I'm writing. But damn, four years is getting to be a while with this thing. Four years is a long time to have an oversized question mark floating over my head. I must shake this cold, get back to my routine and figure out what to do with myself for the rest of my long life.