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.



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. 





Thursday, November 6, 2014

Working, collecting

At work today. Monthly 24 hour urine collection stashed in a cooler under my desk. 

Sunday, November 2, 2014

42 Months

42 months since my diagnosis.  It's getting to be a long time.  That's a good thing. Other than my own stupidity with protecting my port, everything is good. This week is maintenance.  Then later this week it's time to do my monthly labs. Given my veins are effectively useless, I'll have to have one of Phan's nurses draw blood from my port and then I'll have to rush to the lab to take the blood. Annoying but that's what you get when you do chemo for 42 months out of one arm.

42 is also John Brockington. He played for the Packers in the early and mid 70s.  he was the first running back in NFL history to open his career with 3 consecutive 1,000 yard seasons.  Back then, 1,000 yards meant something. The season was 14 games and it was a bit more difficult to accomplish. 

Tuesday, October 28, 2014

Kidneys and More

Recall last month my creatinine went up to 4.9.  Put a bit of a scare in me. The kidneys reflect how the multi myeloma is doing.  At its best several months ago, we had the creatinine number down to 3.2. The lower the better. And that 3.2 was out of failure range.  Last month, I was about to complete my 8th cycle of treanda part deaux, which has done a great job of beating the disease down. But the treanda makes the kidneys work harder and the 8 cycles probably had something to do with the 4.9.

I'm on maintenance now. In the middle of the 1st cycle of maintenance. Velcade, dex, revlimid and medrol. No treanda.  The other day I did basic blood work, using my balky veins. The results are in and the creatinine is back down to 3.79. Good news. Getting a break from treanda was just what I needed.  I've also added a curcumin supplement to my daily regimen.  Curcumin likely helps fight cancer and provides overall physical benefits. And I've gotten serious again about my kidney diet.  Put it all together and we have me out of the failure range again. Phew.  Let's keep it up.

Pat Killingsworth has written about curcumin and I'd suggest going to his website www.multiplemyelomablog.com  to read about it.

One last thing, my friend Brad started treanda this week.  He's the second person I know who has tried it.  It's always a little nerve wracking trying something new. But I am confident the treanda will beat his myeloma down.  Nonetheless, let's all send positive wishes and thoughts in Brad's direction. 

And....that does it for today's update.

Monday, October 27, 2014

Saturday, October 25, 2014

Things We Don't Think About

I've mentioned it before, we can't use my left arm for giving blood, infusions or blood pressure, given the unused fistula in my wrist...the marriage of a vein and an artery...for use if I ever have to dialysis. Hopefully not.  Anyhow, my right arm veins are becoming almost useless. The biggest and best source of blood has scar tissue and is now dry. Weird stuff.  So when I go to give blood, it's a darn challenge. Today was a simple two vial blood test. CMP and CBC.  Took 4 needles before we finally were able to tap into a usable vein. Ugh, that sucks.  Luckily, I know the lab tech and she tries to be as gentle as possible.  Recently I went to a new lab and that was a big mistake. The tech used a large needle and moved the thing around like it was searching for an undiscovered reservoir of oil.  The tech today used a small needle and is real careful. I have a port, but that's reserved for chemo or very specific people to use. But, I need to talk to Dr Phan and figure out what we're going to do going forward. I give  a lot of blood and there's got to be a better way.

File this under: Things we don't think about.

Wednesday, October 22, 2014

Saturday, October 18, 2014

A Post from Tom Shell writing for the Myeloma Beacon


Here's a good read from Tom Shell writing for the Myeloma Beacon.  It's an apropos slice of life about living life with myeloma.

http://www.myelomabeacon.com/headline/2014/10/15/myeloma-in-paradise-you-look-really-good/comment-page-1/#comment-57014

Maintenance

Starting this week it's back to maintenance. Finally. Great news. And a bit scary. Here's what my new routine looks like on paper.

Monday, October 13, 2014

What Didn't Get Opened



Winding Down on Birthday Celebration aka Protein or No Protein

Fairly tame as far as birthdays go.  Two beers with dinner on Thursday night. One beer Saturday.  I didn't even open up my giant bottle of Shmaltz Beer that I have.  Who am I?  Saturday night we did get to Baskin Robbins for my ice cream splurge. Rocky Road plus Oreo & Chocolate. No Cone.  The highlight of the weekend was a trip Sunday to a place called the Gentle Barn. It's an animal sanctuary about 60 miles from our house.  Just an awesome, fantastic place.  For about a year prior to my diagnosis, I had given up meat. I still ate fish and occasional chicken. But that was it.  As I was getting sick, but didn't know what it was, my energy was really suffering. At first, I chalked it up to not getting enough protein in my diet. Wrong.

Anyhow, once diagnosed, I was told I needed to eat protein to keep the body strong to fight the impact of the chemo and the cancer. And since I had kidney damage from myeloma, I had to limit (and still do) my intake of foods high in phosphorus and potassium.  This ruled out nuts, beans, legumes, and soy as my protein source. So I started eating meat again. Well, after visiting the Gentle Barn I'd like to give up meat again. But again I'm faced with the question of where I get my protein. But is protein really that important? I don't know. I'm curious what other myeloma patients think. Nutrition has always been a challenge. Doctors don't talk much about it. They just tell you to eat. A cancer patient eating is a good thing to an oncologist.

In terms of the week ahead. I've got Berenson this Friday. Should have my lab results mid week. I did notice that I slept through the night last night without once having to get up to pee. That's amazing and must mean the myeloma is under control. Typically, my myeloma produces a whole lot of protein and I pee a lot. At it's worst, I was getting up 4-5 times a night. Of late, it's only once or twice.  But to not get up at all is pretty darn nice.  And having slept through the night, makes me want to spend the entire day in bed.  This is a story for another day...but as much as I like my job, getting up to go to work while having the myeloma hanging around is becoming less enjoyable all the time.






Tuesday, October 7, 2014

Identity Crisis

So here's the deal.  I turn 53 in a couple of days.  Recently I passed 41 months since my diagnosis.  Later this week I do my monthly labs...24 hour urine, urine catch and about 186 vials of blood.  This is followed by a visit next week with Berenson.  My creatinine has been going up, but I blame it on the chemo and my getting lazy on the renal diet.  Assuming my myeloma numbers are all good, we're switching to maintenance next month.  I've done 8 cycles of treanda since my March relapse. It's time to give the body a rest. I think I jacked up my new port already. Painting, working out, blah, blah, blah. It sucks. You want to live normally. You want to work out to stay ahead of the game. I don't want to look sick. Well, I'm not sick. But then again I am sick.  Anyhow, having this balky port is annoying. But my veins don't work so well anymore, so the port is pretty necessary. Phan wanted to take it out. I said no to that. I did ask for an ultasound just to make sure it's still in place, but he wants to wait. He does want me taking antibiotics just to make sure it's not infected. Infections are the mortal enemy, the kryptonite to myeloma patients.

Earlier today I re-read emails from when I was first diagnosed. Bad idea. That was a scary ass time, for everyone all around. Life has changed a lot. In my early posts, I wrote about all the anger I had that came with the diagnosis. I wrote about not wanting to be identified from that point forward as a cancer patient. Like that was some kind of scarlet letter. I'm no longer angry. Well, it's a different anger. I'm no longer worried about being identified as a cancer patient. That's who I am. I can't remember me before myeloma. And I've met amazing, incredible people. Why wouldn't I want to be associated with them. And in terms of anger, I think now it's an anger that results from kind of being in limbo.  Cured? No.  Sick? No.  Doing treatment and being careful? Yes.  I think folks forget that this is what myeloma patients go through. You can't be on alert non stop for years.  But you also can't get hung up little stuff. 

I've also been having those questions about how I got here. Rethinking life decisions from 20 years ago. Wondering where I go next.  As I turn 53, it's important to note I'm just two years from being able to retire from my job. Sounds weird. I feel about 30 years old. But now that I'm coming up on 4 years since diagnosis, how much time do I have left? Could be a lot. Could be a little. But the point is, do I want to spend my days and my energy working? Or do I want to spend my energy and my days living life?  I've got a Vegas trip in November and a Minnesota trip in December.  In the spring I want to investigate other states, other cities. Start thinking about where I could or should move to in two years.  I imagine getting Leslie on board with a  move to Ames, Iowa could be tricky. But it is rated as a top ten place to live.

I got a dog a harness for my Go Pro last week. I really wanted to hook it up to Gracie and film things from her vantage point.  And guess what, I can't find my fricking Go Pro.  Dammit. Anyhow, I was talking to a co-worker yesterday and I was saying how I could retire in two years. Their suggestion was to put in ten additional years and I'd nearly be matching my salary in retirement. 10 years? I didn't say this, but ten years is a hell of a long time for me. Working for ten more years is a non starter.  At that point I'd really be pushing the myeloma limits. Of course unless a cure or better treatment has been identified. Always possible.

But this all boils down to what is next. Keep fighting myeloma of course. And?

Thursday, October 2, 2014

41

41 months. 41 months since diagnosis. Getting to be an old timer with this stuff.

41 was the number of Brian Piccolo, a running back for the Bears in the last 60s who died from cancer. His story was told in the tear jerker movie, Brian's Song, starring Billy Dee Williams and James Caan. It'll get you every time. 




Wednesday, October 1, 2014

Curious

So my myeloma numbers have been dropping. That's a good thing. All signs point to getting back to maintenance soon. Friday I'll wrap up the current cycle. Next week we do our monthly test.  Mid cycle I do basic blood work. Got those results yesterday.The disappointing thing? My creatinin. It went back up to 4.9. That's it highest in over a year. It typically is a reflection of how my myeloma is doing. But if my myeloma is doing ok, why is the creatinin going up?  I have gotten a little lax on my kidney aka renal diet. So I guess I better tighten things up. Need to lower my phosphorus and potassium intake.  We all draw a line in mental sand of what we'll tolerate. I'll put up with chemo till the cows come home. It's a known quantity. Dialysis? That's an entirely different story. I haven't done it. I do have a fistula in my left wrist, just in case. But my plan is never to use it. Dialysis feels like an absolute life changer.  It's a scary thought. So now I'm on pins and needles till my next lab work.  I should know better. No point in being anxious.

Tuesday, September 30, 2014

Mid Cycle

I'm in the middle of my latest cycle. All seems to be ok, I guess. But this is how I feel right about now. This shit gets old.

Saturday, September 27, 2014

What's in Your Backpack?

I love this scene from the movie Up in The Air with George Clooney.


Yes George Clooney got married today, but I'm not sharing this for that reason. I am sharing it to acknowledge my mentor/friend/fellow survivor Brad, who has a new backpack.  His backpack is carrying a mixture of chemo drugs.  Here's a link to his latest post.  Backpack, backpack.



Saturday, September 20, 2014

Some Thought Provoking Stuff

Pat Killingsworth is one of the first myeloma patients/advocates I came to know 3 long years ago. He is upbeat, honest, and is a real mentor and friend to me. He's written books about living with myeloma and is a frequent contributor to the Myeloma Beacon. His own blog serves as a great source of information and inspiration. Lately, he's been documenting his attempts to find a treatment to stop & reverse his recent relapse. His latest post is a bit sobering, eye opening and thought provoking.  The comments are worth reading.

I'm no expert, but I do know that myeloma is a personal cancer. It manifests itself differently in most everybody. In that regard I'm bothered by some definitive comments about how to attack and treat the disease. I don't think you can make blanket statements.  As an example, i know Berenson's approach isn't for everyone. But it is for me. He has worked wonders for me.  I'd recommend him to anyone that asked.  But I also would not tell people that their approach is wrong. There is no right or wrong. You chose a path and give it your best shot.

Having vented all of the above. Here is the link to Pat's latest. It's a great post and really gets you thinking. http://multiplemyelomablog.com/2014/09/relapsedrefractory-patients-face-difficult-choices.html
 

Friday, September 19, 2014

Eight is Enough

 
 
These are the Bradfords. A fictitious family from the show Eight is Enough back in the late 1970s. I was a big fan. [Side note: there is a bar is West Hollywood, Barney's Beanery, that I love. Lots of tvs, sports, beer, people and decent food. In the early 80s, I was there and had a beer with Willie Aames from the show (bottom right in the above photo). I don't remember much from the early 80s, but this is one thing that I can recall. More recently, a few years back, I was at Barney's with my buddy David and we had a few beers and talked UCLA football with Kid from Kid N Play (on the left)]  
 
Yesterday was my monthly Berenson visit.  My labs were super good this month. Total protein and paraprotein (the bad myeloma generated protein) were both down. Creatinin is inching back down, after inching back up. All good things. I think I got lazy with my renal diet, perhaps explaining the creatinin rise. I'm being more diligent again and the numbers are going down. Note to self....diet matters.  We easily could go back to maintenance right now. But Berenson said let's do one cycle of treanda (bendamustine). Two reasons.  1) Let's beat down the myeloma some more, while we can and 2) Because eight is enough. I've done 7 cycles of treanda since my relapse. Berenson broke out the Eight is Enough reference. So we're doing one more, to reach that nice round, even number 8.
 
A couple of weeks ago, at a bar in West Hollywood, the Surly Goat, there was a fund raiser with Shmaltz Brewery to raise funds for the Institute of Myeloma and Bone Cancer Research. They raffled off a giant 3 liter bottle of Reunion Ale, which is brewed specifically for this fund raiser (and others across the country). Berenson told us that the winner of the beer didn't want it and that I should go it. You don't have to tell me 3 times. He did tell me two times. So I got it. I think we'll open it up on my birthday. It's a lot of beer and will require a few people to drink it. Note: if I send you a drunk email or text in early October, I blame the beer. Now I have two goals, 1) partner Shmaltz with Select Beer Store, a beer store in Redondo Beach owned by friends, for a fund raiser and 2) work for Shmaltz at some point. Fingers and toe crossed that both will happen. 
 


Also yesterday I was invited to be a patient ambassador by a PR firm that represents Millennium, the company that makes velcade, a key myeloma drug.  Sounded awesome to me. I want to get more involved. However in talking with Berenson, he said they just want me as a marketing tool.  They'd fly me to Boston for a week for training. All expenses paid, plus $500.  Not a heck of lot of money for a week of my time. I'd have to miss the busiest week of the year at work. Not good, especially with me pressing for a promotion.  Berenson said don't do it. Don't be a shill for a pharmaceutical company. Leslie said the same thing.  They have a point. If the money was more, I suppose I'd consider it. But here's an interesting thing...I've had conversations with the Myeloma Beacon about writing a column.  And in talking to them, they were clear that they'd want me to limit some of the other things I do, such as Cure Talk panels. Interesting. It's all in the name of health. But it's also in the name of business and competition.  I worry that if I did the thing for Millennium that I've be given a tight script to work off of. Hence their week long training. I like to say my own thing. So after debating it and a sleepless night, I'm going to pass on the opportunity, but there will be others.  I still do want to write for the Beacon however, it's a terrific source of information and support for me. I am waiting to hear back from them on my first draft column.
And this is my update for this fine Friday. A purple Friday. Which is a whole other story...what's happening with my Vikings. I'll save it for later.  A song by the English Beat.