Blood Cancer Madness 2015

Create your brackets, follow college basketball's March Madness, perhaps win money and donate to the Leukemia and Lymphoma Society. All for just $10. Selection Sunday is March 15. Games Start March 19. Simply click on the following link. Password is bloodcancer
Link:
Blood Cancer Madness 2015

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.





Rest in Peace Stuart Scott

Stuart Scott, an anchor on ESPN, fought cancer three times. He passed away this morning at the age of 49. Sad news. He gave a powerful speech back on July, give it a look.

Pulled Calf

The calf feels way better.  Back to working out....cautiously. But here's what a pulled calf looks like if you're low on platelets, which I always am. Note, looks worse than it feels. 

Wednesday, December 31, 2014

Gracie Refusing to Budge

This morning it was about 43 degrees in So Cal. I thought I could get Gracie to go for a walk. I was wrong.

Tuesday, December 30, 2014

News, Notes and Other Almost New Years Eve Thoughts

Hello all, my name is Matt and I'm a myeloma patient.  It's been almost two weeks since my last post.  I recently wrote about the myeloma burnout I'm experiencing and it continues in full effect.  It's started to seep over in to other aspects of my life. Just feeling blah about stuff.  And make no mistake, the fact I feel blah, causes me further angst. I'm supposed to be celebrating and embracing life every single darn day. Instead, I'm a walking bundle of stress, guilt, regret and anxiety.  Tired of thinking about so many things.

Nonetheless, I continue to do well.  Maintenance is doing the trick. I feel good and I'm coming up on 44 months since my diagnosis.  Note that 44 is one of my favorite numbers, as I'll explain come January 2....the 44th month.

But the burnout has prevented me from even being able to update this blog.  Nonetheless, let me get you all updated:

  • Today wrapped up the latest cycle of maintenance...velcade, dex, revlimid and Medrol. This is the third cycle. After cycles one and two, my number improved significantly. This weekend I'll do the 24 hour urine collection to get the latest results. My monthly Berenson visit is January 9.
  • Yesterday I got my interim blood work results.  The key number is 3.39. That's my latest creatinine.  That is excellent. The second lowest number since I was diagnosed.  It means my kidneys are resting, recovering and the myeloma induced protein is lower and therefore not beating up the kidneys. Excellent news, seriously excellent.
  • In parallel with maintenance, I started taking Curcumin. If you google curcumin and myeloma, there is a fair amount of literature about the potential myeloma fighting benefits of curcumin.  Pat Killingsworth and the Myeloma Beacon have had posts about the topic. Coincidence or not, since I started taking Curcumin, my myeloma numbers have taken quite a dip and I've been feeling as good as I've felt in 3 and a half years.
  • I have been feeling quite strong and fit. As I wrote recently, my workouts lately have taken a turn in the positive direction. Cardio is great, I'm kicking ass.  Upper body strength is excellent, I finally figured out a work out routine that doesn't mess up my port, so that's nice.
  • Unfortunately two nights ago, I pulled a calf muscle that impacts my ability to work out. I've been limping around horribly for two days. What happened you ask. Almost embarrassing and definitely a reminder that I'm 53.  I was walking Gracie. We like to mix in an occasional sprint on our walks. She likes it. I like it. And the other night we took off on a sprint and I immediately felt a pop in my upper calf. My first thought was I tore my Achilles. That would suck big time.   I limped home. Iced it and watched it. No bruising, I was still able to move my ankle around, so my lack of formal medical education diagnosis was calf muscle pull. The Achilles was spared.  I showed it to Phan yesterday. He agreed that it wasn't an Achilles tear. But he did caution to watch it carefully, that if the pain persists, he'd want to do an ultrasound to ensure I didn't have a blood clot, which I am at an increased risk of having due to the various medications I take, revlimid being at the top of the blood clot producing potential list. As I write this, I can report that the calf is already starting to feel better. Leslie has me putting Arnica on it, which acts as a recovery speeder upper and anti bruising agent.  The lesson here: I'm old and shouldnt' be randomly starting a sprint as if I was a kid.  Caution Matt Goldman. Stretch Matt Goldman ( I reference my first blog post about stretching nearly 44 months ago).   The sore calf and the amazing amount of ear hair I have are stark reminders of the passing years. Also a lesson is that all things that for normal people aren't a big deal, require me to be extra vigilant and mindful about, because of the myeloma and the crazy amount of drugs I am on.
  • I continue to miss friends and family at an increasing rate. I plan to use the early part of 2015 to deal with this.
  • December 30 is the 10 year anniversary of my step dad Ed's passing. It's gone by fast. I've written before about how when I was initially diagnosed I had vivid dreams with Ed in them, where I was traveling somewhere and Ed kept putting up obstacles in my way, preventing me from getting where I thought I needed to get.  While I'm not the most spiritual person, I took these dreams as a literal effort from Ed telling me it wasn't time for me to die, that I still had living to do.  In death as in life, Ed has had quite an influence on me. He and my mom married when I was 10. 
  • Regular season football is over. The Vikings finished 7-9. They finished the season strong. I'm predicting playoffs for the Vikings in 2015. Teddy Bridgewater is the quarterback of the future. It's time for me to get a Teddy jersey. Do I get a home purple or away white? Hmmm..tough decision. I'm leaning white. I'm don't live in Minnesota, so I'm an away fan...hence white. But I might change my mind.  
  • My friend and mentor Brad is working to gain an upper hand on his myeloma. He had a rod placed in his leg today and he's gearing up for a stem cell transplant.  Google myeloma and Bradstrong to get to his blog. It's an honest, inspiring look at his journey with myeloma.
  • Pat Killingsworth, who relapsed early in 2014 and had been struggling to find a drug mix that worked is doing well and finally got a drug regimen that is beating down the myeloma.  I recently met Pat and Gary Peterson face to face. Both are amazing, funny, positive people who know so much more about the disease than I do.  I'm proud to call them friends. And that's a plus with this disease, the awesome people I have met and become friends with.
  • Gracie has become a brat dog lately. Every time she is left alone in the house, she is destroying stuff. Eating paper, books and cardboard boxes. She never used to do this. Perhaps she too has myeloma burnout and has some stress. While I love Gracie beyond what words can express, I sure wish she'd stop acting like a dog and go back to acting like a person.
And this is all I got. Happy new year to all. Know that you're all on my mind. Here's a picture of the curcumin that I take. It's over the counter and I take 6-8 a day.




Wednesday, December 17, 2014

Albuquerque

Never been there, but I have a fascination with it.  Breaking Bad was centered there.  I like the high desert.  Thoughts? Anyone?

Myeloma Burnout

When I met Pat last weekend, he mentioned and we discussed being on myeloma time. Meaning our lives have gone on fast forward. We approach things and make decisions with a mindset that there truly is no time like the present. Live life every day.

Today was day one of cycle 3 of maintainence 2. Holy shiznit, chemo brain has turned me into a bad and unconfident speller). When I showed up to Phan's office today, I was not on the schedule, so they didn't have my velcade.  Normally I am pretty OCD about confirming these things. But this time I didn't confirm.  Normally I call the week before to remind the office I'll be there the coming Tuesday. Didn't do it this time.  So when I was told they didn't have velcade, I assumed i'd have to reschedule treatment.  Immediately I checked in at work, finding out my schedule for Wednesday or Thursday. I started thinking about delaying chemo for a week and how I hate to miss a treatment.  It felt like a massive weight was suddenly dropped on me.  Fortunately, they had velcade in their other office and one of their office staff, Janice, went to get it.  I offered to ride along, feeling guilty for the snafu.  But Janice got it, I stayed at office, talked to the doctor and nurses, and I was back on schedule, including having insomnia tonight.

Tomorrow I am scheduled to speak with some folks about being a patient ambassador for velcade and myeloma.  This is something I've debated doing for a while for various reasons that I won't get in to.  But I convinced myself I wanted to do it, figuring it'd be good to interact with other patients and share my experience. I also thought it'd be fun, educational and a rewarding experience.  I'd have to fly back east for a few days in late January for training.

Believe me, I'm grateful for how well I am doing and how well I feel.  In nearly 4 years with myeloma i've gotten to know people who are thriving, some who are struggling and some who have died.  Quite a mixed bag.  Right now I worry about things like blood draws, staying in shape, what kind of car to get, what to bring to Phan's holiday party this Friday.  Given I have an incurable cancer, Dr Phan says these are good things to worry about.  As they say...it could be worse.

All of the above, brings me to the title of this post. Myeloma Burnout.  While I can tune my myeloma out pretty well, it is always hovering in the dark recess of my brain 24/7.  It hit me today when thinking about rescheduling chemo and pondering being a patient ambassador that I'm kind of burned out on talking and thinking about myeloma (tired of thinking in general as well) But it can't be avoided.  I look at people like Pat and Gary and Cindy and wonder how they do it.  They are passionate, active, positive, knowledgeable advocates and have been doing it much longer than I have.  How do they do it?  It's an admirable mindset.  

Having cancer is nothing like I ever imagined.  It's an ongoing test.  And right now, I trying to figure out the answer to the latest question.  It's an open book test though and input from my fellow patients is welcome and encouraged.

Saturday, December 13, 2014

Every Day is Game Day

I haven't written much lately. Not much to say. Yesterday was my monthly Berenson visit.  Two months of maintenance in the books.  Maintenance is dex, velcade, revlimid and medrol. Infusion one day every other week.  Myeloma is funny. Not funny haha, but funny as in weird. It behaves so differently for each individual. I had been on maintenance for a year and a half. Then in March I relapsed, so we went back to Treanda (bendamustine). I did 8 cycles of treanda and we beat the myeloma back down to an acceptable level. So in October it was back to maintenance. The same maintenance I was on when I relapsed. So you'd think, perhaps this routine lost its effectiveness. Right? Wrong. After two months of maintenance my numbers are better than ever. The best they've been since I was diagnosed. Kappa light chains....down.  Paraprotein....down.  Great news, yet so hard to figure out. I'm glad I have a doctor focused solely on myeloma. In theory he understands what is going on.  My visit yesterday was quick.  Berenson said hi, told me I'm doing great and took some research blood. The research blood is nice, because that means they validate my parking. His office is in a high rent district on Sunset Blvd in West Hollywood. Normally we park on a side street. But with the heavy rains, I parked in the building lot.  It would of cost $15. But since I gave research blood. $0.  Woohoo. Small victories.

Last week I visited my mom in Berkeley.  I think it was the first time just me and her spent time together since I was diagnosed.  Sure, we've seen each other plenty. But this was the first chance to just have my mom time, which I needed.  It was nice. I'm going to try and get up to visit her more regularly.

Also going on in Northern California last weekend was the annual ASH conference. ASH being the American Society of Hematology. While I didn't go to the conference, I did got to the conference location and met up with Pat Killingsworth and Gary Peterson.  Both are friends, role models and myeloma advocates.  I'm spoken with them on the phone, on Cure Talk panels and via social media. But this was our first face to face meeting. It was really nice.  They're knowledgeable, funny and supportive . I've borrowed a couple of pictures from Gary.


Tuesday, December 9, 2014

Kim Alexander

Kim is someone I've gotten to know via Twitter @TheKimAlexander. She is very active in the myeloma and cancer community.  Her husband, Elijah Alexander, was a NFL linebacker who passed away from myeloma in 2010.  This linked article is an interview with Kim and discusses her goals and mission, and what keeps her going.  Worth reading. 

Friday, December 5, 2014

Monthly Labs

The months fly by. Another blood draw from my port. 


Thursday, December 4, 2014

Story on Medical Marijuana

Interesting story on the cancer fighting benefits of medical marijuana.

A Tip of the Hat to our Caregivers

I've said it before and I'll say it again, I think cancer can be more difficult and more stressful for the caregiver. Leslie has been my caregiver and has been remarkable. While I'm pretty self sufficient at this point and am living a normal life. Leslie has gone from being my caregiver to now being her dad's caregiver.  Our caregivers make a lot of sacrifices to take care of others.  Cure Magazine has an article this month on the caregivers challenges. It's worth reading.  Here is the link.

Tuesday, December 2, 2014

Numbers!!!!!!!!!!!!!!!!!

43-The number of months since my diagnosis. Also the number of Richard Petty , the King of NASCAR.

7-Number of Daytona 500 wins by the King.

3.55-Latest creatinine. An excellent number. It had creeped up to 4.8 recently.  What has changed? I'm off of treanda and back on maintenance, giving kidneys a break. Also, started taking curcumin a couple of months ago. Some literature sense it helps fight the myeloma. My latest labs were also great, so I say yes to curcumin.
 
11.8-Latest hemoglobin. That's almost normal. My workouts have been going great, actually feel like I'm getting strong as opposed to just going through the motions.

$10-Cost to get in to Tackle Myeloma Bowl Challenge.  Half goes to the MMRF and half goes to 1st, 2nd and 3rd. Between now and the end of the year, it's also the MMRF challenge, which means all donations are matched. Double the impact. Double the fun.
 
100-The minimum number of people I'd like to get to join the bowl challenge. Here's the link. It's on ESPN Bowl Mania. Group is Tackle Myeloma. Password is myeloma.



Saturday, November 29, 2014

Belated Happy Thanksgiving

I hope everyone had a good Thanksgiving.  

Not much to report. That's a good thing. Exciting news, while watching Florida State vs Florida game today, there was a Goldman sighting.  This might be the first college or pro football Goldman I've ever seen. 

Tuesday, November 25, 2014

The MMRF Challenge and the College Football Bowl Season

The Multiple Myeloma Research Foundation is a great organization, that has done so much to further awareness of myeloma and have helped advance treatment options, moving us closer to a cure every day.  Currently the MMRF has a challenge. All donations to the MMRF before the end of this year will be matched by the Dr Elsey Fund to Cure Cancer.  The MMRF's goal is turn $1 million into $2 million before 2014 is over.  #MMRFChallenge

To help this cause and to add excitement to the upcoming college football bowl season, I've created a bowl mania group on ESPN called Tackle Myeloma.  Starting December 20 there will be 39 college bowl games.  The goal of Bowl Mania is to pick the winner of each game and rank them based on your level of  confidence, from 39 to 1.  You get points for each correct pick, with the points reflecting your level of confidence.  It adds some real excitement to the games.  Buy in for this is $20.  And what will happen is that 50% of  money collected for this group will go to the MMRF.  Remember this amount will be matched by the Elseys. 

The other 50% goes to 1st, 2nd, and 3rd in our Tackle Myeloma group.  So, let's say 100 people join. That's $2,000.  Which gets divided as such:

$1,000 to the MMRF
$600 to 1st place
$300 to 2nd place
$100 to 3rd place.

Sounds like a win, win opportunity.  Here is the link to the bowl mania group.  The group is Tackle Myeloma and the password is myeloma. The  lineup of all bowl games will likely happen December 7.  Thanks and enjoy!!

Tackle Myeloma Bowl Mania

Friday, November 21, 2014

Work Supplies

Here's my myeloma supplies at work.  Renvela, a phosphate binder, taken after lunch, for the kidneys. Sodium citrate to flush the kidneys, also taken after lunch.  Tums to help keep my calcium up to snuff.  Purel for clean hands. A thermometer in case I'm feeling feverish, which (knock knock knock on wood) hasn't happened in a while. And Metamucil, for the clogging effects of all my other meds.




Monday, November 17, 2014

Purpose and Motivation

Caveat. This post is written after 2.5 beers.  Tomorrow is day 1 of my latest maintenance cycle. My most recent numbers were excellent. After nearly 43 months, we've got this myeloma thing under control.  It can change at any time. Or it can not change. It's a mystery.  A mystery that we all face.  As I've written before, the mental part of this is the biggest challenge for me.  I spend way too much time pondering how I got here, where I'm going and asking what the heck is my purpose.  Meaning, meaning, meaning. 

I'm over my pity party from the other day.  How? By looking forward. By telling myself I'm resilient.  Leslie stepped up big time with her dad and again impressed me with her ability to make things work.  She did that with me when I was first diagnosed and it was touch & go.  Looking at things from her perspective, it must be frustrating to go from caregiver role to caregiver role.  When does she get to take care of herself?  I'm hoping I can get her to write a post for this blog.  My fellow patients would probably all agree that myeloma/cancer might be tougher on the caregiver than on the patient.  They're trying to save their loved one, while also trying not to think of what they'd do if their loved one were to die.

Like I said....2.5 beers.  Anyhow, I as look forward and come up with some plans for 2015. (That works for me and keeps me going...making plans. I have no kids to serve as my motivation, so it's got to be something else).

In the last two days I've come across two people, two distinct people, who are, for now, serving as my motivation.

One is a guy I read about in the NY Times, who decided to go to every NY Knick game this season, home & away.  He lost his job and decided, fuck it, I'm following the team I care about. Seems silly, right?  But it's not.  It's passion and dedication and throwing caution to the wind.  All things I'm searching for in myself as I walk around with myeloma bubbling beneath the surface.  Here is a link to the story.  Kudos Dennis Doyle. Chase your dream!

Next up is Ricky Williams. Heisman Trophy winner from the University of Texas. NFL running back.  Fascinating character. I just watched a show called A Football Life on the NFL network (channel 212, for those of you with Directv (which by the way still doesn't carry the Pac 12 Network depriving me of UCLA basketball)). Ricky Williams was an atypical football player.  People didn't understand him. He's finding his way.  He gave a Tedx talk recently discussing his journey and finding purpose.  I suggest you watch them both. The Tedx alone is good, but the Football Life show puts it into context.

It's now 3.0 beers for me.  But this is all part of my myeloma journey and I feel it's pertinent to share.

Enjoy

A Football Life with Ricky Williams

Friday, November 14, 2014

Do Not Even Think of Saying FML in Front of Me

So today was supposed to be my scheduled monthly Berenson visit. It was to be my first visit since going back on maintenance.  But I had to cancel the appointment. Why? Nothing wrong with me.  Leslie's dad had surgery yesterday and recovery is going to be a challenge so I needed to be home to help.  The good news is I got my lab results, after yet another hiccup at the lab. How tough is it for the lab to not fuck up? I guess pretty tough. Anyhow, I received my full results and my numbers look great.  Improvements across the board after one month of maintenance. Creatinine dropped a bit. Protein and paraprotein (the bad stuff) dropped. Kappa light chains dropped.  All good.  Berenson would have told me to keep on keeping on. No changes. It would have been a short visit.  I'll see him next month. Good, good, good.

I've probably said it before, what's tough about myeloma is that it keeps going. The fact it keeps going is a good thing. It means we're still alive. At this point,  I'm confident in my ability to handle the myeloma and all the physical challenges that come with it.  The mental challenges is a different story.  Walking around with this cancer that is just waiting to rear its ugly head, makes a person want to focus each day on positives and not say no to what makes us happy.  But at times that is easier said than done.  The challenges of regular life also keeps going and keep getting in the way.  The ups, the downs, the complications, the successes, disappointment....all that is never ending.  Have you ever seen the acronym 'FML'?  It means Fuck my Life.  I absolutely hate it. Hate it!!  It's often said when something annoying but not life threatening happens.  Cable tv is out. Fml.  Someone took your parking spot.  Fml.  And while fighting cancer is hard, I've never once said fuck my life.  We accept the facts and battle on.  Today however I'm thinking FML.  Everyone says enjoy life. Every day is a gift. I agree100%.  That is my goal. But it's really freaking hard to enjoy every day when things don't go your way.  So today I say fml.  It's a bit of a pity party today.

Again, the good news is I feel great. My numbers are great. Nearly 4 years in and kicking ass.

More good news. The MMRF is also kicking ass. The Multiple Myeloma Research Foundation. They are not messing around in the fight against myeloma.  Here's another video they created that is sure to move you and sure to make you feel good about what the MMRF is doing.  Give it a watch. It's about 6 minutes long.  Also explore the MMRF website and read about NOW, to learn details on the organization's goals.   

Sunday, November 9, 2014

Short Film by the MMMRF with my friend Brad

Here's a powerful and inspiring film by the MMRF featuring Brad Coustan.  He's a force and myeloma picked the wrong person to mess with.

Film:  Tough Guy.

And here's a link to Brad's blog.

Friday, November 7, 2014

New Way to Draw Blood

I've written recently about the veins in my right arm and how they no longer like to give blood.  This is a problem since I give blood twice a month.  The left arm is off limits thanks to the fistula in the my wrist. Thus, giving blood is now a bit more complicated. 

Dr Phan's nurse draws blood from my port and we then take it directly to the lab.  Just adds a couple more steps. Today was the first time we did it and it worked pretty well. Kind of nice not having my arm jabbed 4 or 5 times looking for a useful vein.