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.  Oooh..am 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.

http://www.nbc.com/dateline/video/dateline-may-7-2015/2862873?onid=209511#vc209511=1

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 blunt....it'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.
http://multiplemyelomablog.com/2015/05/to-imply-multiple-myeloma-is-manageable-indefinitely-disingenuous.html

4 year cancerversary breakfast


Tuesday it's back to chemo.  Wrapping up another maintenance cycle. 





Saturday, May 2, 2015

4!!!!!

Four years since the myeloma diagnosis. Feeling good, feeling strong.


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.  

Tuesday, March 24, 2015

Cruising through another cycle

Wrapped up another cycle of maintenance today.  That means insomnia, crazy energy, followed by a crash. That's my next 3 or 4 days.  Later this week I'll do my monthly 24 urine collection. Results middle of next week, followed by a Berenson visit.  My blood counts are hanging in there. No procrit this week.

Last month, after Berenson's visit, I saw a new kidney doctor. I hadn't been in nearly 10 months to any kidney doctor. Probably too long...but also a sign that my kidneys keep on hanging in there. Because it was a new doctor, he wanted me to get a kidney ultrasound, so he can see how they look., i.e. blockage, etc.  Last week I had the ultrasound. I tried to get a picture of my kidneys on the machine, but the nurse told me that isn't allowed. She said it's now the law and even expecting parents can't a copy of their ultrasound. The funny thing is she blamed it on Tom Cruise. She said that when he was married to Katie Holmes and she was pregnant, he bought his own ultrasound machine. And to protect the output, he lobbied the state to change the law about the sharing of images from ultrasound. "look it up" she told me. I haven't yet, but perhaps tonight while I'm not sleeping, I will look it up. Sounds a bit doubtful to me, but you never know. Anyhow, the result is that I couldn't get a photo of my own kidneys.  Dr Phan today told me that he saw them and everything looks good, nothing to worry about.

Also right now, we have March Madness going on.  92 people are playing in Blood Cancer Madness Pool and have done brackets.  The beauty is that half the funds go to the Leukemia and Lymphoma Society.  Next year, I'd like to get 200. This weekend I did an MMRF 5k in San Francisco. My mom was going to walk with me, but wasn't feeling 100% , so I went alone. On the walk I met a woman who lost her husband to myeloma in 2011.  We walked and talked, she was very nice. She was telling me how much the LLS did for her and her husband in terms of paying for travel and expenses when they needed to travel to see other myeloma specialists.  This weekend was also the Big Climb in Seattle. Obviously I didn't do it this year, but I have done it in the past and it also supports the LLS.  There are so many great organizations out there. Fund raising is tough. I try to do one event a year, but years come around quickly and I start to feel like I'm bugging people. That's what nice about using March Madness as the fund raiser. People love doing brackets, they can win money and money goes to the LLS. Win, win, win.

Just finished up a Caesar salad and matzo ball soup. A post chemo tradition. Soon I'll doze off for a couple of hours, then I'm awake for the next 24 hours or so.

What else? We're going to Albuquerque next month. Yes!! For you Breaking Bad fans...how great is Better Call Saul?  Very great.  Watched The Interview while doing chemo today. Super funny. I was LOLing right there in the infusion room.  Friday is UCLA vs Gonzaga in the sweet sixteen. Go Bruins!!

And don't  get me started on the Adrian Peterson situation. Argh.

Not sure if folks follow my friends Brad Coustan and Pat Killingsworth. Both are facing challenging times with their myeloma. Both are persevering and are taking the disease head on.  Another friend, Dan is doing hospice, having run out of options.  I've exchanged a few emails with him over the past couple of months. The way in which he and Tib, his partner, are handling this is truly beautiful.  Sometimes it just feels like words when I try to express how I feel about these friends. But believe when I say, I'm moved by them and am lucky to know all of them.

And that's about it.  I'm feeling good. Numbers holding steady. Everything is fairly routine.

Thursday, March 19, 2015

Last Call for March Madness

Brackets need to be done by 9 AM west coast time, today Thursday March 19.  My goal was a 100 participants.  Up to 91.
 
So I am making one last push. Just $10 per entry. Money is split, with 50% going to Leukemia and Lymphoma Society and 50% going to 1st, 2nd, and 3rd.    w And feel free to share this with anyone who might be interested. Just follow the below link.


https://yho.com/tourney?g=17401&k=a2a5c653b00ec14d

Sunday, March 15, 2015

Blood Cancer Madness 2015

It’s that time of year again, let the March  Madness begin, please consider joining in on the excitement. Cost is $10, half the money goes to the Leukemia and Lymphoma Society,  the other half goes to 1st, 2nd and 3rd place winners.

Last year, we raised over $1,000 for the LLS. I'd love to surpass that number this year.

The actual first round is Thursday March 19 at 12:20 EST, so picks need to be in prior to tip off.

You can send checks or cash for your buy in to me at: Matt Goldman, 2137 N Studebaker Rd., Long Beach , CA 90815 or paypal mattgol@gmail.com.

Group Name is Blood Cancer Madness 2015, password is: bloodcancer.

The link to participate  is below, you also have to join Yahoo sports, which is no big deal.

The more people or entries the better, a great cause and a fun time of year! Just le me know that you are participating, you can join multiple times but each entry is $10.
 
 

Wednesday, March 11, 2015

My Myeloma Recap

Yesterday was the start of Cycle 5 of my latest maintenance.  Both Doctors Phan and Berenson are happy with how I'm doing. I'm happy with how I'm doing. Leslie, my mom and Gracie are happy with how I'm doing. We're all happy. I'm approaching 4 years since my diagnosis.  With the approaching milestone, I thought it would be good idea to recap what's happened and what's happening.

Ready? Here we go.

I was diagnosed May 2, 2011 at the ripe age of 49. (note this is the same day that Bin Laden was killed, which I had no idea about until a few days later) For about 3 months leading up to this date, I was fighting horrible fatigue, daily fevers, and night sweats.  I used to ride my bike to work every day. 10 miles each way.  I was having huge problems catching my breath while riding. I was totally unaware that I was living with severe anemia, hence getting oxygen to my system was tough. For 3 months we tested me for an assortment of ailments. Never once was cancer mentioned or considered. Eventually I was hospitalized, we did a bone marrow biopsy, saw my kidneys were on the verge of failure and BAM we had myeloma. I'm Kappa light chain myeloma but can't remember if I have chromosomal deletion.

Dr Phan was the oncologist on duty while I was in the hospital, which is an amazingly fortunate break for me. Couldn't ask for a more caring, communicative doctor.

Note that yesterday, there was a new nurse at Dr Phan's office. A male nurse...my first one in four years.

We started me off with Velcade and dex. MM got worse. We added doxil. Didn't work. MM got worse. We dropped doxil and added thalidomide. Didn't work, MM got worse. At this time, Phan sent me to Berenson. Berenson wasn't messing around and put me on treanda and added a second oral steroid, medrol...at the time a rarely used myeloma chemo drug. But we had to do something, or as Dr B said, I'd be lucky to see the end of 2011. We saw fairly immediate results. Numbers started dropping after one cycle. We did twelve cycles and then went on to maintenance for about a year and a half.

Also note that in the interim, I went to City of Hope to discuss an autologous stem cell transplant. They wouldn't touch me however, given my poor kidney function. Keep that in mind, when you see success rates of transplant facilities....they may cherry pick patients to boost the odds of success. 

Berenson is quite and not quietly anti transplant.  I'm fairly entrenched in his camp given my success. I did harvest my stem cells just in case and they are frozen away at Cedars Sinai.

Another note, I've only been kidney impacted. Even today my bones are good. I make sure I do weight bearing exercise regularly to keep the bones strong. so far so good. Fingers crossed.

Also in the interim I had a kidney doctor that wanted me to start dialysis.  I wasn't symptomatic of failed kidneys.  But with creatinine over 8, she said it was time. I got a fistula in my left wrist. Before that she refused to take out a crazy catheder that was hanging off my neck allowing me to do plasmaphersis...a crazy machine blood cleansing that was the precursor to dialysis.  Appointments with her were doom and gloom. Her tone was basically that I was going to dye. F her. To this day, she is my least favorite doctor I've had. Another reminder, you can drop any doctor you want if you aren't feeling a connection. I dumped this kidney doctor.  I got the fistula, but opted to not do dialysis. From my perspective, the kidneys still worked.

Leslie and I saw a few different nutritionists to get me on a kidney friendly diet.  Now we have my creatinine down to low threes. Out of "failure" range. I've been able to avoid dialysis and add certain foods in moderation to my diet. As along as we keep the myeloma under control, my kidneys will keep working. I also do acupuncture and focus on the kidneys with that.

Last year, I had my first relapse. We caught it early and put me back on treanda. 8 cycles later we had my numbers down to an acceptable range. For this past 5 months I've been back on easy breezy maintenance.

Fast forward to today.  Nearly 4 years in. Doing good. Mentally it's still a challenge though.  I work full time, I work out regularly. I got married. Life is fairly normal. But, I think it's important to mention the following:
  • I still do chemo once every two weeks.
  • I see a doctor for some reason or another at least once a week.
  • I get weekly procrit shots (if needed) to help my blood counts.
  • I do lab work twice a month. Because of my fistula, I can't use my left arm for blood draws. We took my first port out a while ago because it might have been infected. So infusion and blood draws were all in my right arm. Those veins eventually stopped working. So I got a new port and now I have to go to Phan's office for biweekly blood draws. Makes the effort a bit more time consuming as opposed to just going to the lab. Saw a new kidney doctor last week and he wanted his lab to get some blood. It was a real bitch and took several tries to get blood from the right arm.
  • I have energy and mood roller coasters from my biweekly dex. Adds to the challenge.
And that's it. I'm happy with my status. I'm happy with me. I was told I'd become a better and happier person through all this. I laughed 4 years ago at the thought. But it's very true.  But challenges are still there.

I've met some amazing people over these 4 years and made some life long new friends. I've also lost some friends. And I continue to watch friends struggle mightily. Inspiration though is gained from all these people. Everybody is strong and focused and dedicated.  I do my best to emulate them.

Thanks everyone who has supported me all this time and thanks for understanding that I'm living a new normal. New but not necessarily better or worse. Just different. What choice do I have?

Saturday, March 7, 2015

3 Years, 10 Months, 4 Days. A Day in the Life of MYeloma

Full day yesterday. It was a day off from work, but busy nonetheless:

5:15 AM     Wake
5:30 AM     Walk Gracie
6:20 AM     Gym. 20 minutes upper body weight bearing exercise for bones. 20 minutes cardio
7:30 AM     Home, shower
8:05 AM     Get donuts for Dr Phan's office
8:20 AM     Procrit shot at Dr Phan.  Hemoglobin was 9.0. Low.  First procrit shot in a month
9:15 AM     Hour drive to West Hollywood for Dr B.
10:20 AM   Monthly Dr. Berenson appt.  All good, pleased with everything.  Total 24 hour protein 1,062.  Upep paraprotein 47%.   Kappa light chains 42.  Give research blood
12:00 PM   Breakfast for Lunch. Smoked Salmon Benedict. Leslie had Eggs Florentine
1:00 PM     Appt with Dr Froch, new kidney doctor. Give blood, urine, schedule ultrasound. Creatinine 3.48. All good
2:20 PM     Back in car for drive home
4:20 PM     Arrive back in Long Beach. 2 hour drive. Stop for early dinner. 
5:30 PM     Home. Walk Gracie
8:30 PM     Sleep




Monday, March 2, 2015

46

Today is 46 months since my diagnosis. Wahooo. Feeling good. Berenson later this week and we'll know how I'm doing. Expecting two thumbs up.


Saturday, February 28, 2015

March Madness

It's almost March Madness time. The excitement of college basketball. The excitement of doing your brackets.  And here is the place to do your brackets...I've created a group, Blood Cancer Madness 2015, on Yahoo Sports. $10 buy in. Half of funds go to the Leukemia and Lymphoma Society, and the other half will go to 1st, 2nd, and 3rd.  Last year we had nearly 80 people play. This year, we want to exceed 100.  Below is the link to join.  The password is bloodcancer.

Selection Sunday is March 15. Games start March 19.

https://tournament.fantasysports.yahoo.com/t1/invitation?g=17401&k=4ac6d082d73c5ddf

Friday, February 27, 2015

Blood Work Friday

Wrapped up another cycle of maintenance chemo this week. Today was blood and urine lab work.  Since we draw my blood from my port, I get the blood drawn at Phan's office and carry it to the lab. That's how we do it!

Wednesday, February 25, 2015

Monday, February 23, 2015

Lack of Focus

Focus.  I've been able to focus for nearly four years.  I've gotten good at thinking about work when I'm at work and not thinking about my health routine. But it really is getting more difficult. Tomorrow is chemo and I'm already thinking about how I'm going to feel the rest of the week. Weds I'll be jacked up, on fire, super productive. Thursday and Friday, I'll be tired, grumpy, not feeling right.  That's all I'm thinking about right now...how I'm going to feel.  The key with this here myeloma is balance.  Balance between thinking about today versus thinking about the near and long term future. 

Thursday, February 12, 2015

MMRF 5K March 22 in San Francisco

On March 22, with my Mom, I'm doing the MMRF 5k in San Francisco.  The past couple of years, I've done different events, but this is my first time doing an MMRF walk/run.  I walk, no running for this guy. 

The MMRF is an amazing organization that provides support, creates awareness and funds for finding a cure for this currently incurable cancer of the blood. If you'd like to contribute to the cause, just follow the below link.  Thanks in advance! 

http://support.themmrf.org/site/TR/RaceforResearch/General?px=1607203&pg=personal&fr_id=1980

Monday, February 9, 2015

Cure Talk This Thursday Feb, 12

Here's the link to this Thursday's Cure Talk at 3 pm west coast time, 6 pm eastern time. The subject is Early Treatment with Dr Irene Ghobrial from the Dana Farber Cancer Institute in Boston.

http://www.curetalks.com/event/rsvp/Early-Treatment-of-Myeloma-with-Dr-Irene-Ghobrial-/145/

Sunday, February 8, 2015

Thumbs Up from Dr B

I had my monthly visit Dr Berenson. All is good. We continue on maintenance. Protein and paraprotein remained the same. My light chains dropped to the lowest level in a long time, which might help explain the low creatinine and improved kidney functions. I am low on vitamin D, so Dr B ramped up my prescription and suggested I get back and see a kidney doctor. I haven't been in several month, but it's time. 

Tuesday is the start of another cycle of revlimid, dex, and velcade.

And that is all I got.

Monday, February 2, 2015

Tuesday, January 27, 2015

Cycle 4, Day 15 Maintenance

Morning: Work Conference in downtown LA



Afternoon: Port hooked up

 
 
Infusion machines
 
 
 
My first and favorite nurse, Cristel, is moving on to a new job. 
 



Sunday, January 25, 2015

#CancerGate

We're one week away from the Super Bowl. For the 39th year in a row, the Vikings aren't in it.  Nonetheless, I've watched probably every super bowl since 1968, except for one, and that was the 1999 game with the Denver Broncos and Atlanta Falcons.  The Vikings were 15-1 that season (1998 season), set all kinds of records and were the best team in the league. Randy Moss was a rookie and he absolutely dominated that season. You know when I hit 84 months since my diagnosis, I'll use Randy Moss's picture.  Sadly, the Vikings hit a bump in the NFC Championship and lost to the Falcons.  I just couldn't watch the SB after that. To this day, I hate the Falcons and cringe at any mention of the dirty bird. 

This week, all the talk has been about the Patriots using deflated balls.  It probably didn't matter, they dominated the whole game and would have dominated with balls at any pressure.  Note all this talk of deflated balls has turned many of us back into 9 year old boys, snickering at any mention of balls.

(note, as I am writing this I just saw a Bud Light commercial for Up For Whatever, where a random guy got to be a human pacman. Awesome!!  Reminds me why I actually like commercials and at one point in my life wanted to work in advertising.)

Anyhow, what does deflategate has to do with cancergate?  Really not much. I just wanted to use cancergate in the title.

I haven't been writing much.  I have written about my myeloma burnout. It continues, although it's not so much burnout, as putting my head in the sand.  This week I do maintenance chemo. It's the last treatment of this cycle.  Later in the week, I'll do my 24 hour urine collection and give half a dozen vials of blood. My kidneys are better than they've been in four years, Physically, I feel great. So I'm fairly certain my labs will be good. Which means we continue on this path.  That's all good.  I keep doing what I need to do, but my mind isn't into it.  I suppose that's good.  I think when I do think about, anxiety hits. What's my future look like? Recently I bought a new car. Well a new used car. It was a fricking tough decision.  But what a stupid thing to get worked up about. It's a damn car. The funny thing is that now that I've made my decision, I wonder if I bought the right car for me, given my circumstance. My circumstance? That I have an incureable cancer that could ramp up in strength any time.  It goes back to the whole thought process....I need to live for today, but also live so I'm good for a long time.  And that's probably the reason why I'm putting my head in the sand. Out of sight, out of mind.

Just thinking out loud here. Once in a while, someone I know says something to me about what I've written on the blog and I get  little sheepish. Like why the hell I am writing what I write. Why am I spilling my thoughts into this blog?

When I was first diagnosed, I got a letter from a friend of my mom's who was battling the disease. He (Dan) set me a letter telling me what to expect.  I was so fricking angry and sad when I was diagnosed. I didn't want to hear from anyone about anything. The anger is gone.  Dan and his wife Tib live in Minnesota. My mom knows Tib from the woodworking and art community.  They live in Minnesota, my favorite state.  I follow Dan on Caring Bridge. Recently they both wrote about how Dan is out of options for treating his myeloma. He's tried it all.  Next up for Dan is home hospice. They're starting now.  But their post of how they were preparing themselves for the inevitable was absolutely beautiful while also so very heartbreaking. Dan wrote about purchasing cat food and how in his mind, he wondered if he'd be around to see all the cat food get consumed. They recently took a trip to spend quiet time in nature before settling in at home. Dan and Tib are amazing. Dan's honesty is inspiring.  But like I said, also heartbreaking. I asked Tib if it'd be ok to mention them in my blog. There's not much I can do from 2,000 miles away, but I wish I could help. The best I can do is send peace, love and energy their direction.

I also want to mention my buddy Brad. He continues to fight the disease with an approach and attitude that I can only hope to come to close to matching. Another case of a person and family that moves me to be a better person.

I've got some work to do. I can't have my head in the sand forever. I can't just keep going through the motions.  I must do more.

Tuesday, January 20, 2015

3.13

Latest creatinine number 3.13.  That is the lowest since my diagnosis and is great news.  My kidneys continue to bounce back. Take that myeloma.

Arnie Goodman

I never met Arnie Goodman. But from reading the Myeloma Beacon, I felt like I knew a bit about him. He had an amazing outlook and attitude. Arnie passed away this past July.  His wife wrote a recent post for the Beacon about Arnie's last few days.  It's beautiful and tear jerking at the same time.  Please give it a read.

http://www.myelomabeacon.com/headline/2015/01/20/arnies-rebounding-world-the-final-chapter/

Sunday, January 4, 2015

oops....44

44 months came and went. January 2 was 44 months since my multiple myeloma diagnosis. Here are 3 number 44s.

Matt Asiata, current Viking running back. He was undrafted but has become a key component on the team.

Chuck Foreman, my favorite Viking ever. Played in the 70s and who I would emulated if I had made it to the NFL. He ran and set the standard for catching the ball as a running back.

Leroy Kelly,  a Cleveland Browns running back from the 60s and 70s. He's in the NFL Hall of Fame.  One was one of my favorite players growing up.