Thursday, January 30, 2014

Recent Interview with Dr Berenson

Lots and lots of options, and lots of progress in finding a cure for myeloma.  Here's a video with Dr B discussing what's happening in myeloma research.

http://vimeo.com/83826088

3.29

It's a new low for creatinin. Right on kidneys!!!  Also first treatment with reduced dex. Nervous time. Why change what's working? Because dex has been kicking my ass. Here we go. 

Wednesday, January 29, 2014

The Multiple Myeloma Research Foundation

Yesterday, I participated in a Cure Talk discussion about the Multiple Myeloma Research Foundation.  The guest was Anne Quinn Young who is VP of Marketing for the MMRF.  Really an interesting discussion and enlightening in terms of everything the MMRF is doing to finding a cure for this incurable cancer.

Here is a link to the talk. The podcast is directly under Anne's photo.  Give it a listen....

http://www.curepanel.carefeed.net/event/rsvp/15/

#Bradstrong Golfs Against Cancer

My buddy Brad is recovering nicely from his recent stem cell transplant and is kicking myeloma's ass. He has created a golf tournament to raise funds for the Multiple Myeloma Research Foundation. It's an impressive endeavor. Here is a link to the details....

http://bradstrong.wordpress.com/bradstrong-golfs-against-cancer/

A Message From Bill, a Myeloma Survivor

Here's a short video message from myeloma survivor Bill Mchugh on the one year anniversary of his stem cell transplant. He's climbing the Empire State Building stairs in a couple of weeks to raise funds for the Multiple Myeloma Research Foundation. And he has started a phenomenon known as A Week Without An Elevator, which is this week and allows us to show our support for all those myeloma patients who can't climb stairs.




Friday, January 24, 2014

And Now For Something Different

 
Trying something new.  A video update.  Check it out. It's a little long and rambling. Happy viewing.


 

Wednesday, January 22, 2014

Sweat

I'lve always sweat a lot. It's a family trait I think. But jesus h christ, I'm a sweat factory now. Just did a slow walk at lunch. It's overcast and coolish. And i'm drenched. I blame it on my meds. My system is so jacked from all the drugs. Sweat, stomach issues, puffy neck, etc etc. we're fighting the myeloma nicely, but wow so many other things.  Anyone else experiencing sweat issues? 

Friday, January 17, 2014

What does the fox say?

I'm late to the game on this, but I'm addicted to this song and video. Give it a watch.

http://www.youtube.com/watch?v=jofNR_WkoCE

Not Normal

Here is a blog from a woman named Jet who lives in England and was diagnosed with myeloma in February 2011 at the age of 49. Same age that I was at diagnosis. She discusses her new life since diagnosis and how her life seems good, but is definitely not normal. I found her words to ring true.

http://jetblackliving.wordpress.com/2014/01/16/not-normal/

Wednesday, January 15, 2014

Ouch

I just wanted to give my nephew Jared a shout out. He snapped his femur this past weekend snow boarding and had emergency surgery to insert a rod. Best wishes Jared.

Here's before and after surgery xrays of Jared's femur.


Tuesday, January 14, 2014

Dog is Good

It's a Tuesday night. We're jut kicking back at home, watching tv. Gracie lies between us. That Gracie is a good dog. Actually, much of the time I think she's human. On our walks, I definitely have conversations with her. She's a great listener and sounding board. When I first got sick, I could make it perhaps half way around the block and I'd be exhausted, huffing and puffing. Gracie knew something wasn't right me and she adjusted her pace and curiosity to meet my energy level.

Thursday is chemo. Velcade, dex, revlimid. Day 15 of the latest cycle of maintenance. That means Friday is 24 hour urine day. I also work Friday, so the jug comes with me to work.  A week later I see Berenson. I skipped last month and my results were good.  Earlier this week I did the basic blood work. CMP and CBC.  Everything there is stable. White blood cells in the normal range. Hemoglobin a bit low, so I'll get a shot this week to bring the counts up.  Creatinin is 3.51. That's consistent with where it has been for several months. I had a glimmer of a sensation that it would be under 3 for the first time since my diagnosis. No such luck.  I told myself I was going to ignore these lab results. I promised myself that I wouldn't call for the results. But I couldn't do it. I needed to know.  It sucks having this mystery out there almost every week.

And the above is a description of my life. Woohoo. Pretty darn exciting. Once a year there is a blood drive at work.  It's tomorrow. I can't give, obviously. My blood is tainted for oh so many reasons. In my whole building we have about 400 people. In the group I work in, we have roughly 45.  Cancer rarely, if ever, comes up. People don't ask me questions. I think everyone assumes I am all better. Yesterday I sent a blanket email to my group.  I've had nearly 30 transfusions over the past 32 months and 10 days.  My blanket email wasn't preachy or a downer. I simply reminded people of how important donating is. I had 4 responses from people they were absolutely giving. Nothing from anyone else. Well there was the definitive no that I received from someone who sits right by me. Him I asked in person.  And I know it shouldn't, but it kind of bugged me that only 4 people acknowledged my email with a yes. Everyone else was silent. How hard is it to give blood, if you can? I/we go through a lot of poking with needles and blood draws on a regular basis. A once a year donation to me is the equivalent of scratching your ear. But I guess everyone has reasons for why they do what they do. And perhaps I'm acting entitled by thinking that at least 10 or 12 of the 45 would say something back to me.  "Atta boy Matt" "Glad you're doing good Matt"

I hope everyone has taken some time to check Brad's blog updates this week. He's giving a blow by blow recap of his stem cell transplant this week. His attitude is awesome, always  has been. But it's also real interesting to read about the SCT process. He's taking away the mystery and fear aspect of a transplant. Whether I get one eventually or not, I feel better off knowing how it works. And with Brad's recap, I feel like I would know what expect. Brad's blog is http://bradstrong.wordpress.com/

Also there is Bill who had his transplant last year and this year is training for the Empire State building stair climb.  He's raising funds for the MMRF. Check him at: http://rugbyhubby.blogspot.com/p/gl.html .

My Mom and I have exchanged emails this week on an Op-Ed piece this weekend in the New York Times. People are bashing, rightfully so, the author, Bill Keller, who for some reason decided to take issue with a woman who blogs about her difficult battle with cancer. Keller basically asks why the woman isn't simply dying quietly, gracefully and quickly. Side note, he questioned her getting a therapy  dog. Fuck Bill Heller. I won't even provide a link to his piece, but here is a link to an article in Cure Magazine addressing what he wrote. http://www.curetoday.com/index.cfm/fuseaction/blog.showIndex/kathylatour/2014/01/14/Dying-online
And, that folks, is today's update. I'm feeling real good and we're moving forward.

Monday, January 13, 2014

Pat Killingsworth

Pat is a fellow patient and blogger and Cure Talk participant. Pat also written books about myeloma. He was diagnosed with multiple myeloma in April 2007 at the age of 51. Recently his myeloma has re-engaged but he maintains a positive attitude. Here is a link to his most recent post about a day in the life of myeloma patient.

http://multiplemyelomablog.com/2014/01/just-another-day.html

Friday, January 10, 2014

Another view of cancer....from Ethan Zohn

Ethan Zohn is a cancer survivor. He was on the show Survivor and serves as a great role model for living with the disease. His cancer is Hodgkins Lymphoma. Here's his latest post, where he voices his opinion of cancer.

http://www.everydayhealth.com/columns/ethan-zohn-the-zohn-zone/i-effing-hate-cancer/

Bill McHugh...Myeloma Thriver

My buddy Bill is a myeloma survivor. He was diagnosed in 2008, had a stem cell transplant last year and is climbing the stairs of the Empire State Building in February, raising funds for the Multiple Myeloma Research Foundation.  Below is a link to his latest post, where he explains why he does what he does.

Bill honors fellow myeloma patients during each of his training session.  Yesterday he gave a shout out to Brad, who is recovering nicely from his stem cell transplant.  If you're feeling generous, feel free to donate to his efforts. 

http://rugbyhubby.blogspot.com/2014/01/the-stories-we-tell-and-meaning-they.html

Thursday, January 9, 2014

Day 3 of Brad's Transplant

The guy is an inspiration and an animal. Myeloma is not going to slow him down. 

Saturday, January 4, 2014

Matt's Update a Hodge Podge of Stuff

You might be wondering "hey Matt, how are you doing?"

Short answer is good. Everything is stable. But let's take a little closer look at what's going on.

  • This past Thursday was day one of either cycle 20 or 21 of maintenance chemo.  We've got differing counts.  Either way, 20 or 21 is a lot. It was my first chemo of the new year. Welcome to 2014.  Dr Phan was happy with my latest myeloma labs.  This weekend is my dex crash. Gonna be tired and grouchy and perhaps depressed for the next two days. But by Monday afternoon, I'll be good to go.
  • Also had a procrit shot on Thursday. That's to help my blood count. I hadn't had a shot in a month or so. But my hemoglobin dropped a little bit below the threshold of what's acceptable. So procrit time. No big deal. Remember a couple of years ago, my blood count was usually super low and I was getting transfusions all the time. I've had well over 20.  No transfusions in a long ass time. Knock on wood.
  • I did talk to Phan about my mental state. I'm doing pretty good mentally, but I have my moments where I feel a bit overwhelmed about walking around with an incurable cancer. Phan recommended a therapist to go see to discuss things.  This therapist had been a oncologist in a previous career, so he ought to be familiar with the challenges facing cancer patients.
  • Needed a new starter in my car this week. Frustrating. Annoying. But it got me thinking if it was time to get a new/used car. I've got no car payments, so do I want to start making payments? Not really. But I also had a curious thought. Let's say I got a 6 year loan on a new car. Would I outlive the loan? Probably, but hard to say. And should such a thought even enter my mindset? Probably not.
  • May 2, 2014 will be the third anniversary since my diagnosis. That is pretty darn good. I am kicking ass. I want to do something memorable and challenging to commemorate the cancerversary. Last year we did the Big Climb in Seattle and raised funds for the Leukemia and Lymphoma Society (LLS) .  This year I want to raise funds for the Multiple Myeloma Research Foundation (MMRF).  There is a half marathon in Santa Barbara on May 10 that I am pondering. Not sure I'd be able to run the whole thing. But if I start training now...run/walk...I ought to be in good enough shape to do the half marathon.  But what else can I do? Parachute from a plane? Or I can create my own event. I can do my own thing and make it a fund raising event for the MMRF.  Any thoughts? Ideas? Suggestions? I need to decide soon, but am open to suggestions.
  • On February 26 I am hosting a Cure Talk discussion. The topic will be fund raising. The panel will include Brad, who we know. He created a Bradstrong golf tournament last year that raised a whole bunch of money for the MMRF. Also on the panel will be Kendra, a triathlete who competes to honor her Dad who has myeloma and to raise funds and awareness to fight the cancer. And lastly, we'll have Wilma who works for the LLS in Washington and coordinates the Big Climb, among other events. I think this mix of panelists will be real useful for folks who are wondering how they can contribute to myeloma awareness, research, and support. I'll keep everyone posted as we get closer to Feb 26.
And that's it. Like I said, I'm good. Working out regularly. Working full time. Oh I didn't get the mobility coordinator job that I interviewed for in December. Disappointing. And a huge mistake by the city, I am super confident that I was the best person for the job. But who knows what happens behind closed doors when political decisions are made. The City Manager made the final decision and part of me thinks that perhaps my run in with human resources last year played a part in the decision. Paranoid? Perhaps. Oh well, we're on to other great things this year. I have no doubt about that.

Munira Premji. A Thoughtful Myeloma Patient

I've written a lot about the mental challenges of myeloma. It's always hanging over our heads. Is it coming back? Am I doing everything I can to fight its eventual return?  Am I surrounding myself with positivity? No easy task, any of these.  I came across Munira's blog the other day.  I suggest reading her post about her mindset and physical well being one year after her transplant. Even more enlightening is the video of her discussing her mental and emotional state since her diagnosis.  It's right on. Made me tear up a bit, but it left me smiling and ready to attack the world. Another myeloma patient with a winning attitude.

The blog:
http://i-will-survive.org/2013/12/31/endings-and-new-beginnings/

The video:
http://www.youtube.com/watch?v=-KU1sx5e_VU

More on Brad Coustan's Stem Cell Transplant

Myeloma is a funny thing. It manifests in different ways. Many people have bone issues. Some people have kidney issues. Some have both. I have kidney issues and no bone issues. I'm working hard to do weight bearing exercise to keep my bones strong. Both the myeloma and high dose of steroids can give the bones a real beating. Anyhow, early on in my journey we went to the City of Hope here in LA to discuss a stem cell transplant. Because of my kidneys, I wasn't qualified for a transplant. My kidneys would not have been able to handle the massive dose of chemo. Soon thereafter, I saw Berenson for the first time. His philosophy is no transplant.  I did harvest my stem cells just over a year ago at Cedars Sinai. That sucked, a real miserable experience.  And because of my unique mixture of chemo drugs, I had a real tough time producing enough stem cells that would be used in the event we did opt for a stem cell transplant in the future. The stem cells are frozen away at Cedars. Not sure if Ted Williams frozen head is nearby.

I wrote the other day about Brad and his upcoming transplant. Let's all send him positive thoughts and wishes. Although I have no doubt that he is going to continue to kick myeloma's ass and he's going to come out of the transplant in remission and healthier than ever.  Having said this, I am curious on the actual process. What happens each day of the transplant?  Well, Brad's latest post walks us through this. Pretty darn interesting. And pretty darn impressive his attitude. Give it a read and if so inclined feel free to send Brad attaboys. He's gonna have some free time on his hands over the next month. And whatever you do, don't give away anything about Breaking Bad, which is on his watch list over the next few weeks.  Read on...

http://bradstrong.wordpress.com/2014/01/04/124-pre-transplant-stuff/

Friday, January 3, 2014

Stay Up!


Daunte Culpepper, Vikings quarterback great, told me to stay up. He signed my note from Dr Phan saying the same message. Greg Coleman, former Viking punter and one of the first Black punters in the NFL and who made this whole weekend happen, also signed the note. When I get home, you will hear the whole story. For now, here is the letter 

Bradstrong


My buddy Brad is having his stem cell transplant starting Jan. 6. Sunday is his head shaving/NFL playoff party.  He's on the east coast, so I can't be there.  But let's all send Brad best wishes for complete remission. He was diagnosed in December 2012 and has been kicking myeloma's ass with his positive attitude and with the support of his family.  In the past I've shared a couple of posts from both Brad and his daughter Ava.  Ava is pretty amazing with her atitude and love for her dad.

I met Brad several months ago here in California and this past summer in New York at a Yankees game, along with Amy, another myeloma survivor.

#Bradstrong has kept me motivated and perhaps more importantly has been my go to source for fantasy football questions.

Pictures




Thursday, January 2, 2014

32

Today was 32 months since my diagnosis. Today was also day one of cycle 20 of maintenance. 20 cycles. Wow.  32 months. Wow.  Feeling good, no problems other than my horrendous double chin..thanks steroids.

Wednesday, January 1, 2014

Thoughts on Tuning Out Myeloma

Here's a good read from the Myeloma Beacon; written by Karen Crowly, a myeloma patient. She discusses a recent time when she didn't think about her myeloma.

http://www.myelomabeacon.com/headline/2013/12/31/myeloma-mom-do-you-ever-forget/