Friday, June 28, 2013

Rest in Peace Tom Kowalski

Let's not forget that myeloma is some serious shit.  I'm telling myself this as well.  I've mentioned the amazing support network I've developed on Twitter.  Tom Kowalski provided me with unending support and encouragement.  He was a fighter and a role model for how to live with this disease for countless myeloma patients. A month ago he received a good report from his doctors.  Sadly, he passed away this week. Please all take a moment to send positive thoughts and prayers to his wife and kids.
http://www.legacy.com/obituaries/dailyherald/obituary.aspx?n=thomas-g-kowalski&pid=165531526&#fbLoggedOut

Thursday, June 27, 2013

More on 4 for 4

Rode home today and accomplished my goal. Rode in every day. It just hit me that this is a significant milestone. And what's nice is that I got stronger as the week went on. By the time I rode home today, I was moving up hills in higher gears and at a faster pace. My cardio is coming back. I don't work Friday this week, but next week, Monday, I am planning on keeping my streak going.

I also had not a single medical appointment this week. No labs, no shots, no nothing. I never even really thought about myeloma. Seems like forever since I've had chemo. Work was nuts this week. I busted my ass and I'm still no worse for wear.  All positives.

Next week is chemo week. Weds afternoon. So I'll be celebrating the 4th of July wired on dex. Jumping jacks for Uncle Sam.

CURE Magazine Article about Multiple Myeloma

Here's an article about MM and current treatment options. Things are looking up every day!

http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/2117

Suleika Jaouad's Latest from the NY Times

So true......
http://well.blogs.nytimes.com/2013/06/27/life-interrupted-unkept-resolutions/?_r=1&

4 for 4

Set goal...check. Achieve goal...check.  Rode to work every day this week and I'm no worse for the wear.

Wednesday, June 26, 2013

Numbers

3 for 3 on riding to work this week. One more day to go.

7,053....number of times the Cure Talk with Don Baylor has been replayed.

Tuesday, June 25, 2013

Bradstrong

There are some powerfully inspirational people out there.  My buddy Brad is one of them.  He was diagnosed in late 2012 and look at what he has created already.  Fantastic stuff!!!

http://bradstrong.files.wordpress.com/2013/05/bradstrong-program.pdf

A fellow patient's post about dex and living life

This post fits right with the theme of what I just wrote. Suggested reading.....
http://www.myelomabeacon.com/headline/2013/06/25/myeloma-mom-live-like-you-are-living/comment-page-1/#comment-52740

My Love/Hate Relationship With Dex

Dexamethasone.  Dex to us myeloma patients.  It's a powerful steroid that works in concert with our other drugs to make the whole concoction do its job.  Dex typically induces a day or two of insomnia and unchecked energy.  It's followed by a crash. A couple days of tiredness.

To be honest, I don't mind the dex high.  At times I actually like it.  The first night of insomnia I use to my benefit. I work out. I read. I stay up late watching tv. I send long emails to people.  I keep Leslie and Gracie awake. I update my quicken. I make plans. I look at cars, bikes, vacation spots, shoes, all kinds of stuff on the internet. 

The first day, after the night of insomnia, is unchecked energy and isn't so bad either.  I go to work. I'm highly productive.  My brain is working double time. I'm funnier and smarter on my dex day. At least, I think I am.  I do a lot of clapping and jumping on dex day.  I encourage team efforts.  Anything seems possible.  Myeloma seems like a little hiccup at worst on dex day.  Not bad, right?

This is my dex love.

But I also get moody right from the get go with dex. I have little patience and am annoyed if things don't go my way. Oh wait, maybe I'm like that already. I'm sure some people would say I've always been like that.  I think I mentioned that I warn co-workers not to annoy me, given the dex driven short fuse.  Despite the energy and the high, dex does make me want to crawl into a corner somewhere and avoid all contact with other people.

Two days after my treatment, the dex wears off and there is a crash. It's a physical and mental crash.  Physically, I'm just plain old tired.  This past Sunday I laid on the couch all day watching tv. I didn't even have energy or desire to take Gracie for a walk.  I force myself to move around a bit, but I'd prefer not to.

Mentally, the crash for me is more difficult.  As I said, the mental challenge of myeloma is a tough one. So many thoughts run through my head.  The dex crash amplifies all my negative thoughts. Woe is me is heightened.  I feel like a loser for not embracing life. I think about how much the cancer has consumed me and I have no ability to have a normal conversation about anything other than cancer.  Yesterday was a particularly bad crash day.  My mind was fucked up. We had a lunch for my retiring boss.  I sat with some folks who I like but haven't seen too much lately. I had nothing to say.  I just sat there, thinking every word that came out of my mouth was pathetic.  I had meetings, I had issues to solve...and I just couldn't get in to them. It all felt hopeless and pointless. I went home after work and laid down in the middle of the living room floor, eyes closed. Leslie got me moving.

I mentioned my achy nut yesterday.  It's fine now and really isn't anything to worry about.  I know I can delete any post I write at any time.  But I tell myself, once I upload a post it stays.  So last night, I came home and was kicking myself for mentioning my nut.  Why would I do that? Who wants to hear about my nut?  Why would I want to open myself to questions about my left nut?  But I posted it and it had to stay. 

This is my dex hate.  Self loathing, self pity, hopelessness run rampant at times.  See why I hate it?

But then there is the high.  That wonderful high.  I love the energy I get for two days.  I love feeling invincible and on top of  the world.  It's a roller coaster for sure.

And that is my dex story.  I'm not even getting into potential issues associated with long term steroid use.

Monday, June 24, 2013

Skywire

Did you all see Nik Wallenda cross the Grand Canyon on a tightrope? Wow! 

One Down, Three to Go

My goal this week is to ride in every day to work. I'm off Friday, so we're talking a four day work week. So far, so good. Rode in today.  Can't see a reason why I won't ride tomorrow.

Aches, pains, cramps and Revlimid

Gary Peterson is a fellow myleoma patient.  He has a website that discusses myeloma survival rates; comparing doctors, hospitals, etc. It's pretty interesting stuff.  You can read it at http://myelomasurvival.com/index.html

Gary is also an active participant in Cure Talk.  He wasn't on the panel the other day, but he did call in and he didn't hold back in terms of mentioning some of things myeloma patients face while treating the disease.  Managing myeloma for most folks involves a drug regimin that includes dexamethasone, a steroid, and revlimid.  Me personally, I also have velcade and medrol (another steroid) thrown in to the mix.

Revlimid is a funny drug.  I take it every other day during my cycle of maintenance chemo, which lasts 15 days.  Then I get a break from it for two weeks, before starting up again.  Revlimid impacts me by giving me crazy nighttime muscle cramps in my legs.  Not always though. But sometimes the cramps in my calves and feet are so bad, that I wake up several times at night because of the pain.  Sometimes I have no effects.  It's hard to say.  Potassium is something that can help with the cramps.  But with my kidneys, potassium is something I've had to work hard to avoid or minimize.  Bananas have been a no-no for the most part over the past two years. Recently though, I had a banana to help with the cramps.  My kidneys have improved enough that I can have that occasional banana.  It helped.

Last night though....wow. Lots of aches and pains.  This morning still have aches and pains. It was a revelimid night, so I had the leg cramps.  But recently I've also had a little of pain in the groin area.   I thought it might have been my left nut (pardon my bluntness).  We discussed it with Dr Phan and were put at ease that there is no link between myeloma and testicular cancer.  Whew. That was my first concern. We actually determined that since I was riding my bike more often, I needed to change my seat, to take some pressure off of that region. It seemed to work pretty well. No more nut pain.  But last night, the groin ached like a son of a gun.  But I focused on where the pain was coming from, becoming one with it, and it seemed like it was from the groin muscle itself.  I'm thinking it was a revlimid related cramp in that muscle. That I can handle.

A few years ago, I jacked up my hamstring.  It never really healed correctly, and at times it will really knot up. This was before myeloma.  Last night, that knot in the hamstring really tightened up. More overnight pain.  My lower back was also a little achy during the night.

Mind you, I'm 51 and some of these things are going to start happening any how. But throw in myeloma and myeloma drugs, and there are times I feel like an old ass man.  This morning for instance, I'm generally feeling old.  I did ride my bike in today, so the aches and pains aren't limiting me.  They're just annoying.  There is an actor, Jon Polito, who was in one of my favorite movies ever...The Freshman.  He's a myeloma survivor.  I watched an interview with him very early on in my journey. He talked about how whenever he has an ache or pain he'd call his doctor, worried that the pains were myeloma related.  His doctor would tell him that no, it's just that he is getting old and experiencing some of the normal age related stuff.  When I first watched this interview, I didn't really get it. I was too early in the process.  Now I get it, you do wonder if every little thing is myeloma related. Usually and so far, every little thing is not myeloma related.

The point is, Gary's question the other day got me thinking.  There are a host of side effects that come along with myeloma and treating myeloma.  But we power through them. I don't really talk about them.  Pat Killingsworth discussed how he finally was doing well enough, that he had a hip replacement recently.   That is pretty damn good.

I've got aches and pains.  But I work through them. I ignore them. I walk like an old man at times.  I stretch. I shake them off.  It's ok. I actually feel pretty darn good.

Sunday, June 23, 2013

What's Next?

June is winding down. Next up is July. July 2 is my 26 month cancerversary.  We're cruising along. It's all good.  My numbers are holding steady. Maintenance chemo is doing the trick. I'm getting in tip top shape to keep this fight going.  Lately, I've been trying to not get too into the mental aspect of all this. I got real tired of hearing myself. It was becoming blah, blah, blah. 

On the conference call the other day, the topic was stress.  We strayed from the main topic several times, but it was still a great conversation. What's interesting is that I was viewing stress as what hits us from the world around us.  But what I was reminded of during the call, is that just having myeloma alone can be stressful.  It's a bit of a mystery. I exchanged emails recently with a fellow myeloma patient.  We're both doing well. But we both also know that others aren't so fortunate.  We both mentioned Don Baylor's attitude. Looking forward. Power through. Work out when tired. Don't put limits on yourself. All great stuff.  But what about those who are struggling? Are they any less tough or focused? Of course not. Sometimes, I feel a bit guilty for celebrating how well I am doing. At chemo the other day, I basically did work and joked around with the nurses for 3 hours. That is not how I imagined chemo being.  Two years ago, I felt horrible during chemo. It seems surreal now. But I'd sit in chemo, under a blanket, sleeping, crying, nauseous, wondering how this happened. Hospital stays seems a lifetime ago. That's good right?

I'm past the worry. Instead I find myself debating if I should do a 60 mile bike ride in Vegas in September. It's going to be hot, as Leslie points out.  Maybe not the best thing for me to do. But part of me really wants to do it. It's a challenge. It's another push towards normalcy.  It's another step towards kicking ass.  But I think it's also mental trick I play with myself. Nothing is wrong with me. I can do whatever. Whatever happens, happens. It's also gravy at this point.

But the irony is that as I put more distance between today and May 2, 2011, I find I get caught up in the usual rat race things. I need to make more money. I want a swimming pool. Should I get a new car. I want to have fun. Does this make any sense? I still spend too much time thinking about the past. Too much time wondering what if. Replaying things I've done. How did I get here? I tell myself that the only reason I'm doing as well as I am doing is because of my past and because of what I've done.   Over the past couple of years, I've tried a few times to reach out to people from my past. To no avail. The past is the past. The future is the future. You can't go home again.   So what's next? Whatever is next is ahead of me. I'll take suggestions.

Friday, June 21, 2013

Oh yes, one more thing

Yesterday after the Cure Talk call, we did a little photo shoot of me and my bike for next month's Momentum Magazine. They're doing a story on how cycling helped deal with a health challenge. Big day for sure.



Next Week's Goal

Next week is a four day work week for me. My goal? Ride to work every day next week. Totally doable. Time to kick things up a notch.

No labs, no doctors, no nothing next week. 

More Don Baylor

Here's an interview that I found with Don Baylor about his work the MMRF.

http://arizona.diamondbacks.mlb.com/news/article.jsp?ymd=20130621&content_id=51334016&vkey=news_ari&c_id=ari

Don Baylor

When I was first diagnosed, I scoured the internet for stories of people who have managed their myeloma and lived long, productive lives.  One of the first people I read about was Don Baylor. He was American League MVP for the Angels in 1979 and manager of the year for the Rockies in 1995. He is also a myeloma survivor, diagnosed in 2003.  Well, yesterday I hosted a Cure Talk panel discussion on stress and myeloma.  Don Baylor was one of the participants and he was awesome. His drive and focus  were motivating and inspiring.  He is now absolutely a role model for me as I continue on my journey.  Also on the call were Dr Berenson, my doctor, and Pat Killingsworth, a myeloma survivor, diagnosed in 2008, and author.  It was a great hour of conversation and worth listening to.

Here's the link to the blogcast.

http://www.blogtalkradio.com/curepanel/2013/06/20/don-baylor-and-dr-james-berenson-discuss-myeloma

Monday, June 17, 2013

A New Week. A Busy Week

Rode to work today. Lots of meetings.

Wednesday is chemo. Followed by my steroid high.  Thursday is the Cure Talk panel. We're talking stress and myeloma.  Don Baylor from the Diamondbacks, Doctor Berenson and Pat Killingsworth are on the panel. We only have an hour and questions are already pouring in. Hopefully, I can keep it flowing nicely.  Thursday is also a little photo shoot of me and my bike. It's part of a short story that will be in next month's Momentum Magazine, a urban cycling magazine, regarding the impact of cycling on health. Saturday I'll be on my couch.

Continue to feel great, continue to get lean and mean. 189 the other day. Shooting for 180. Almost there.

Saturday, June 15, 2013

Another Successful Month

We had my monthly Berenson yesterday. All's good. He's happy. I'm happy. Nothing changes. I keep on my maintenance regimen.  For those interested in numbers, here are a few:
White blood cell  4.3
hemoglobin   10.3
creatinin  3.72

Cost of port removal  $450
Insurance share $400
My share  $50

It's medical bill paying day today. Damn, thank goodness I have insurance Even with insurance, the bills keep flowing. I made a little dent in the stack.  Hello myeloma. Or should I call it myelomanomy?

Tuesday, June 11, 2013

Viewpoint from Fellow Myeloma Patient

My treatment has been quite different than the author of this post, but I'd say he is pretty accurate when he says we're waiting for the other shoe to drop. Interesting reading....
http://www.myelomabeacon.com/headline/2013/06/10/arnies-rebounding-world-waiting-for-the-next-shoe-to-drop/

Friday, June 7, 2013

The Latest Fitness Craze

There's no better to start the day, than with some prancercise.  Watch and learn
http://www.youtube.com/watch?v=o-50GjySwew

3 AM Awake and Hungry

Thursday was maintenance chemo. Day 15. Wrapped up another cycle. I've been up since 3 am thanks to the dex (steroid). I'm now wide awake and fricking hungry. Just had a glass of dry cereal. I love dry cereal out of a glass. If it's a good cereal, I literally could eat the whole box in one sitting. I'm not going to, but I could if needed to.

We talked with Dr Phan. Again not a lot of cancer talk. My numbers look good. Holding steady. I love seeing Dr Phan's smile when he talks about how happy he is when he has patients doing well.  He is 100% invested into his patients. I've said it before and I'll say it again, we are so amazingly fortunate to have him as my primary oncologist. I've thought recently about little decisions we made early on, that didn't seem like much at a time, but have turned out to be significant in terms of my recovery. So far, so good. I've got another 30 years ahead of continuing to make the right decisions.  (Note, something else I've said before and I'll say again (I told Leslie this today) I don't like food servers with oddly placed piercings. Nose, lips, eye brows, etc, etc. It really bothers me and makes me a little queasy. Not what you want from someone you are getting food from. I'm pretty open about a lot of stuff, but I think I'm getting older and a bit more particular about certain things. Today we tried a new place for food and the server had a spike in her lower lip. Nasty)

Back to the topic at hand.  I did have low pressure today however. Typically I'm right on target. But today I was around 87 over 50. Low. No dizziness or anything.  I started taking, at the kidney doctor's recommendation, a new medicine called Losartan. It's a blood pressure medication, but also serves to protect kidneys from scarring.  Curious that I only started it recently. My kidney damage and scarring has already happened. Phan and Berenson are neutral on this med, but Levine thinks it might have some benefit. However Phan now thinks the low blood pressure med could be due to the Losartan. I'm not scheduled to see the kidney doc for a couple of months, so we'll give him a call to see if perhaps I need to drop the med. Again, I don't feel like I have low blood pressure, but the readings say I do. Maybe I'm simply super calm.

Sunday is my monthly pee collection day. Then next week is monthly Dr Berenson. Next week is also dentist, time for a cleaning. I can't forget about my teeth. I do worry that all the medicines I take are giving me bad breath. So I need to make sure I keep the mouth clean. I do ask certain people if I have bad breath. So far folks say I am ok. Are you curious about another two pet peeves I have? Bad breath and body odor. I also worry that I stink at times, again from the crazy meds I take. I worry that my body is expelling the toxins through my pores and they smell. Again, I'll ask people who I know won't lie to me, and they say I don't stink. Phew.  I remember as a kid, I'd wear the same pair of shoes day after day. And I'd have the worst smelling feet. I mean really bad. In college once, I went to a female friend's apartment, I was petrified to take my shoes off, I knew my feet stunk from a lor of walking around on a hot day. Eventually I awkwardly left her apartment, to avoid exposing my feet. Not a smooth move. Welcome to my mind. Now that I'm older, wiser, etc, I've learned to mix up my shoe choice and always wear clean socks. Slow learned? Perhaps.

All is well.

Wednesday, June 5, 2013

Greatest Thing You Might Ever Read

My buddy Brad posted a email that his 8 year old daughter sent to his doctor. It's very touching and guaranteed to put a smile on your face.

http://bradstrong.wordpress.com/2013/06/04/64-email-from-ava-to-dr-j/

June 20 Cure Talk

I am very excited to be hosting another Cure Talk panel discussion on June 20. 2 PM west coast time. It's a follow up to our panel on working while living with the myeloma. This time we're focusing solely in stress. The impacts of stress and managing it.

We've got Don Baylor, former Major League Baseball MVP and manager of the year/myeloma survivior,  Dr Berenson and Pat Killingsworth, myeloma survivor/author.

Here's the link the the flyer, with registration information.

http://trialx.com/curetalk/panels/don-baylor-and-dr-james-berenson-on-the-cure-panel-talk-show-on-june-20-5pm-et/

Saturday, June 1, 2013

Cancer, what cancer?

What cancer? That's what I'd like to be able to say. June 2 is 25 months since diagnosis. (June already....damn time flies). For the most part, I go about things as if there is no cancer. My numbers say something different. There is still myeloma floating around in my blood. Nonetheless I feel great. I think I'm in great shape.  Today, Saturday, was a normal fun Saturday. Myeloma never once came to mind, other than the handful of pills I took in the morning.

I'm realistic about myeloma and how it never really is gone. But I'd like to pretend it doesn't exist. Generally I can do that. But there is always a little voice buried in my head that reminds me about the myeloma. Oh and there is my chemo treatment coming up this Thursday. Cold slap of reality.

The other day Leslie and I ran into an old co-worker. He asked how I was doing. I said great, back to work, back to normal. He responded with "so it's gone and you're good." My response? "Yep". "All Better" . Usually I tell people I'm doing great but still have work to do. For some reason, how he asked me led me to say "All Better". I don't think Leslie caught this slight nuance in my response. But I think, after 25 months, I get tired of thinking about it and talking about it. All better.

If someone asks if my health allows me to do something,  I say I'm fine and can do whatever. No limits. Mind you, I know how fortunate I am to be where I am at. I feel a bit of guilt when I hear about others who aren't doing so well. At my second chemo treatment, I broke down and asked "why me?" I've gotten beyond that question. As I've written before: Why not me? But now the why question is why I am doing so well. Hard to say. But I am thankful that I am.

This was a blah week for me. Going to work every day felt wrong and I thought I was misplacing my energy. Why waste my energy working and being on the treadmill of life, when I have a life to live. Tricky.