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

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.