Thursday, January 31, 2013

Ugh, the Mind

So today it was back to chemo. First time in two weeks That's my maintenance program. Chemo every other week, some drugs at home and we monitor. Not so bad. My creatinin this week is at 3.9. Pretty good number. My blood count was low, so I also got a shot to help with that. I had gone over a month with great blood counts and no need for a shot. But I needed one last week and now today. Dr Phan says it is just the result of chemo. It suppresses the bone marrow's blood making ability.

The two week break between treatments seems like a long time. I kind of forget about the myeloma for 14 days. Going for chemo is always a bit of a slap in the face reminder. Oh right, this is what I have.

Today, for the first time that I've seen, there was a kid, maybe 10 years old, getting chemo at Phan's office. For the most part, most patients are older than me or right around the same age. There have been a few younger adults, but not too many. So seeing a youngster kind of threw me off. He was with his mom and seemed pretty calm and cool about the whole thing. Sounded like he is experienced with all this. That is pretty messed up that kids have to go through this. It's sad, actually. As I was wrapping up my treatment, the kid's mom left to go to the pharmacy, so he was left alone. He was the last patient, so he had the nurses attention and he didn't seem at all stressed or frightened by being on his own.  But after I was in my car and driving away, I started to feel like a real ass. I said goodbye to the youngster as I was leaving, but that was it. I'm feeling like I should have asked if he wanted me to stay and hang with him until his mom got back. But the thought came to me after I was gone. A little late at that point. So now I'm wrestling with the voice in my head that is telling myself I'm an oblivious, self centered jerk. Ugh, it makes me mad that I thought about this after the fact.  Just one giant ugh! Fucking Matt.

First Youngster Siting at Phan

For the first time, I've seen a kid getting chemo at Phan's office. Fuck you cancer.

Direct from Chemo

Hooked up another cycle of maintenance.


Monday, January 28, 2013

$^%#*^%( Cold

Here's a funny thing, I've been fighting this ridiculous cold for two weeks. (up until a year ago, I thought ridiculous was spelled ridicules, but spell check never caught it and no one told me I was misusing the word ridicules. Embarrassing, given I take pride in my spelling)  The cold is annoying, I sneeze, I cough and even one day last week I had to go home early to sleep. But really it's just an annoyance and nothing more.

But what is funny, is I don't even hesitate for a second to tell people how much this cold sucks and how much it is pissing me off. I might even follow up a sneeze with "Mother fucker" to express my total disdain for this fricking thing.  But, you know what I don't tell people? About the cancer. If I need someone to reschedule a meeting because I have chemo, I simply give the reason for rescheduling as that I have to take care of some personal business.   When I went home sick last week with the cold, I had to reschedule a meeting and I told people "I feel like fucking crap and need to go home to sleep"

Sunday, January 27, 2013

The Week Ahead

Thursday is maintenance chemo. Start of another cycle. Maybe blood work before hand. Not sure about that.  And that's it. Simple.

Saturday, January 26, 2013

An Essay on Life Or Something Like It

I saw Zero Dark Thirty today. Wow, intense, very intense. It hit me after the movie that Bin Laden was killed on May 2, 2011. I have zero recollection of where I was when I heard the news. Normally, I remember some specific details of momentous events. I was on the way to the gym, getting gas when 9/11 happened. And since I had my headphones on at the gym, I had no idea what happened until I got home. I remember watching Neil Armstrong step on to the moon in our old family room in front of an old-school, wood paneled, 4 legged TV. And of course, with many Vikings losses, I can tell you exactly what I was doing. May 2, 2011 is also the day I was diagnosed with multiple myeloma. That I remember very well. So I guess I was a little preoccupied and unaware of the Bin Laden news.
Over the past month I’ve seen Zero Dark Thirty, Silver Linings Playbook and Lincoln. All are great. Silver Linings and Lincoln, I’d see again. I’m not sure I could see Zero Dark Thirty again. I would watch Hurt Locker again, also directed by Kathryn Bigelow. Very intense. There’s that word again.
There are a handful of movies that I’ve seen many times and if they came on today, I’d stop what I was doing to watch. Of course, assuming they were uncensored and uncut. The movies include The Freshman, Raging Bull, Caddyshack, and The Godfather. Life or Something Like It is also one of those movies. Randomly, I was thinking about it yesterday.

Life or Something Like It is a 2002 romantic comedy starring Angelina Jolie and Edward Burns. It did moderately well in the box office. I’ve convinced people to watch it and usually they think it’s just ok, despite my characterization of it as a hidden gem. But really, it is nothing spectacular. Something about it though has always resonated with me. Jolie’s character is Lanie, a bleach blonde TV news personality in Seattle. She dates the star of the Seattle Mariners. She’s on the fast track to making a move to New York to become a national face. Edward Burns, of Brothers McMullen fame, is Pete, her cameraman out in the field. Pete is a divorced dad who is grounded and comfortable with where he is in life. He is who he is. They are polar opposites.
Things change when Lanie interviews a homeless man, Prophet Jack, who has an uncanny, unexplainable ability to correctly predict things. He tells Lanie that she will die in one week and that her life has basically been meaningless. This leads to an on camera breakdown when she leads a crowd in the singing of the Rolling Stones I Can’t Get No Satisfaction.

Around the same time, early 2000s, the Mariners in real life were a very good team. Ichiro, my second favorite baseball player of all time, was tearing it up. (Greg Luzinski, the Bull, of Phillies fame will always, always be number one. Massive calves. A friend used to say I had Luzinski calves). The Yankees, though, prevented the Mariners from ever winning a World Series. Irony is that Ichiro, in the twilight of his career, now plays for the Yankees.
After Berenson yesterday, I came home and flopped onto the couch, flipping through channels. The zero isn’t working on the remote so that’s annoying. It was raining, I’m still not 100% from my cold and mindless TV sounded good. I came across a new reality show with Pete Rose and watched a couple of episodes. I’ve always been somewhat ambivalent about Pete Rose. Baseball ought to put him in the Hall of Fame, but I’m not overly bothered by the fact he isn’t. Rose is crass, crude, and very happy with who he is. He’s got a hi rise condo on the Vegas strip, watches a lot of sports, and roams the casino at Mandalay Bay with its intoxicating coconut scented pumped in oxygen. Damn you Pete Rose, you stole my life.

After watching Pete Rose, I dozed off wondering what if 10 years ago I had gotten a job in Vegas and had my condo where I could sit by the window watching people scurry about the strip.
This would be a life very different than what I have now and is very different from having a lake house in a small town, with a pontoon boat, and hosting an annual bbq for any friend or family who wanted to come.

Pete Rose says in one episode that you only live once and you better do it right. That’s his philosophy for being who he is. I whole heartedly agree. He meant it to justify living the way he does, unapologetically. There didn’t seem to be any moral message in Rose’s statement. But one could take it any way they choose. What’s right is personal to each of us. I’m not against the occasional 8 am beer and occasional gambling. Moderation my friends. I was in Vegas when I realized I was seriously sick back in 2011. Living right for me now, means something below moderation and above abstinence. Living right means doing what I need to do to stay healthy and alive.
I've never been fond of attention. I can be passive aggressive, overly sensitive, and am bothered with myself for being on a constant search to find balance and meaning. Public speaking used to be a giant fear for me. I’d get clammy at family holiday meals when there were more than 7 or 8 people and I had to say something to everyone. I hated it. I think I’ve mentioned before that since the diagnosis, this fear is gone. Still not that into small talk. But speaking up and speaking publically? Not a big deal any more. This as a major life change all on its own.

A condo in Vegas or a lake house are very different environments. If I had to pick one over the other, for many years I’d lean to Vegas. Now I’d say I clearly lean toward the lake house lifestyle. It’s much healthier and much more real. I will say though, that even leaning towards a lake house, the anonymity one can assume in Vegas sounds mighty enchanting. My whole life, I liked being in a place loaded with perfect strangers, all friendly, willing to chat, but really not at all interested in who I am. I need close people now. I can’t go it alone.
I absolutely love hanging out at airports. For me, there is almost nothing better than having a drink at an airport bar, listening to conversations, watching people, trying guess to where they are going and why. It’s not that I am thrilled with travel, but I am thrilled with the anticipation of travel. Actually with many things, the anticipation is better than the actual thing.

Life or Something Like It is about two opposites merging. Balancing their differences and finding happiness along the way while maintaining their individuality and quirks. That’s my goal. That’s me. I’d love to dye my hair green or blue or purple. I hate work clothes. I’m not good at self-promotion. Unfortunately these things are incompatible with my work world. Leslie, bless her, supports and encourages my individuality. I want to ride my bike and wear absurd clothes. I want to be respected for my opinions. I want to be feared. I want to be liked. I want material things, material things that really mean nothing. I also want to sit on the edge of the Grand Canyon every year to take in, what for me, is the most beautiful place on earth. I want to blend in to the environment but I also want to be recognized when I am having a tea and walking my pup.
Crazy right?

Balance seems to be the key to a successful life. But how do we balance love, trust, humility, ego, honor, respect, and individuality? That’s a lot of different shit. Maybe they don’t all go together. Can I drive a pimp daddy gas guzzling sedan while also being keenly aware of how much toxic shit is floating around in our air?
And this brings me back to message of Life or Something Like It. Lanie and Pete are looking for balance. They are who they are. While they want more, they also want exactly what they have. Lanie is faced with her own mortality and in quick fashion tries to figure these things out. Pete and Lanie adjust. Turns out perhaps you can get satisfaction.

Maybe, though, everything I just wrote is utter bullshit and I simply like the movie because Angelina Jolie is the star. Hard to say.

Friday, January 25, 2013

Today's Special Guest...Cameron

A few weeks back I mentioned that I'd welcome posts from other folks.  My thinking was it'd be good to hear how others deal with cancer. And I know for me, writing this blog has become more and more important for my sanity. I don't always focus on myeloma, nonetheless this is a great release for me. Recently I heard from Cameron. He's a caregiver to his wife, who has mesothelioma. It's not myeloma. It's a cancer typically caused by exposure to asbestos. That's about all I know about it. But I do know that our caregivers are massively importantly. We couldn't do what we do without them. I also think that a cancer diagnosis can be more traumatic and frightening to the caregiver or significant other or family or friends. It's some scary stuff.

I am sincerely touched that I was asked to share this. Humbled and honored, in fact. It's touching and uplifting. Take a read....

Caring for my Wife Through Cancer

I will never forget the day that my wife was diagnosed with mesothelioma.  It was November 21, 2005.  It was also the day that I became a caregiver to someone with cancer.  Three months prior to her diagnosis, my wife gave birth to a beautiful baby girl, our daughter Lily. At a time when our lives were so full of happiness and excitement, Heather’s diagnosis ripped the joy away from us and replaced it with fear and despair.

My role as caregiver began the day my wife received her diagnosis. Our doctor was very careful when explaining implications of the diagnosis and what her chances were for survival. He also indicated that she would need to receive care from mesothelioma specialist.  He then gave us three options: a local University Hospital, a very good regional hospital with no mesothelioma program, or a mesothelioma specialist in Boston.  My wife was silent, still shocked and terrified from the news.  I immediately chose option number three on her behalf. She needed the best opportunity for beating this terrible disease.  It was the first of countless tough decisions we’d be asked to make over the following months in the face of emotional turmoil.

After that, our daily routines were shattered.  Neither of us could work full-time. My wife could no longer work at all. In addition to working part-time hours, I tended to all my wife's daily needs as well as made travel arrangements and childcare arrangements for Lily. The to-do list continued to grow and I quickly became overwhelmed. On many occasions I found myself in the kitchen floor, crying, faced with the fear of losing my wife to cancer and ending up a poor widower and single father raising a daughter who would never really know her mother.  But, I somehow pulled it together, never letting her see me in my weak moments.  I knew I needed to be strong for her.

I don't know how we would've made it through this terrible time without the help of friends, family, and even complete strangers who all reached out to us in our time of need. There was an outpouring of help including comforting words, childcare for Lily, and even financial assistance, which we desperately needed. Having these people surround me with love and compassion let me know that I was not alone and gave me the strength to continue.

It took several years for our lives to return to some sort of normalcy again. Against all odds my wife was able to beat this terrible disease, after months of grueling mesothelioma treatment under the care of Dr. Sugarbaker.  Today it has been over seven years since her diagnosis, and she remains cancer free.

In the years since her diagnosis, I have found the most precious gift is time. I discovered that I was stronger than I thought I was, able to accomplish much more than I ever thought possible. I am no longer held hostage by my fears and my emotions, and I’ve learned to never give up hope.  This ordeal has taught me how to use my stubbornness to my advantage and realize that all we have to do is believe in ourselves and we can do anything.



 

A motivating note from Leslie

Found this surprise in my snack bag the other day.

Head Games

Let's start with the latest and greatest.  We saw Dr. B today. It was crazy busy. Busiest I've ever seen it. All the nurses were running around like crazy. Too much cancer. Too much myeloma. I gave a little blood for research which means parking was paid for. Bonus. Normally we park on the street, but it's raining today and we had no umbrella in the car, so we parked in the structure at the medical building. 

My creatinin bounced up a little bit after my latest round of chemo. That's normal. It's at 4.46, we're still trending in the right direction. Next lab work, I am aiming for under 4. No problem. We also look at total protein in the urine and percent of that total that is bad. The bad protein is created by the myeloma. And for me, it's the bad protein that beats up the kidneys.  Both total protein and the percentage went down with the latest labs. That's awesome. Maintenance continues. I did ask if there would be any benefit to perhaps mixing in a couple of cycles of treanda, the heavy hitter. My thinking is let's beat that myeloma down even more. Dr B's answer was absolutely not. Why beat myself up with that shit if I'm doing good.  One of the concerns with treanda is that it can cause permanent damage to the bone marrow and my ability to produce blood, more specifically white blood cells. The white blood cells are key to the immune system.  My white blood cell count is actually doing really good. My bone marrow isn't trashed. Yes. There are a host of new drugs coming down the road to attack the myeloma. So if ever needed, I'll probably not go back to treanda. Dr B mentioned that he has a new patient on my regimen. I'm not the only one any more.

Now let's get to the head games. A couple of weeks ago, I had a minor cold. Lasted several days, I was pretty clogged but never felt too bad. It eventually went away. But earlier this week it hit me again, out of the blue and with force. Wednesday I left work at noon, came home and basically slept for 18 hours. That hadn't happened in a long ass time. While lying in bed, I start wondering and worrying that maybe the myeloma was coming back. I was tuckered out. So the mind just starts roaming. Leslie had to walk me down. I had no fevers, I knew my latest labs were good, I didn't have any of the symptoms I had previously experienced. Everything was fine. Yet still I was nervous. I was wondering if I needed to dust off the exit plan. Of course there's no exit plan, I'll battle this thing, but you know what I mean. My mindset is much different now then when things were more critical.  The good news? 18 hours of sleep later I felt great. Worked out this morning, getting in better shape all the time and everything is good.

In March I am doing the Big Climb in Seattle to raise money for the Leukemia and Lymphoma Society. I will say I have no idea how I'm going to do it. Been doing stairs at work, stairmaster and dropping some L Bs.  But wow oh wow, 70 flights is a whole lot of stairs. We'll see how it goes. I still have a couple of months to boost my fitness.

Monday, January 21, 2013

Twitter and Cancer Support

We all know Facebook. It's a way to keep in touch with folks. A way to brag a bit about our accomplishments, promote our favorite causes, and virtually stalk our ex friends and lovers.   

Then there is Twitter. I created my twitter account several months ago, viewing it simply as a way to follow some athletes and public figures.  It turned out to be a source of news almost right as it happens.  It's a pretty powerful source of information.

Twitter does so much more.  For the last couple of years, I'd been trying to refinance our house, to no avail. Our loan is upside down and not a Freddie or Fannie loan. I spoke with the bank and mortgage brokers. The bank wasn't going to budge. Until Twitter. I tweeted one random tweet about my frustration with Citibank and said that they were unwilling to help a cancer patient reduce his monthly payments. Yes, I played the cancer card, but I think that is my prerogative. Lo and behold, the very next day I was contacted by Citibank and they were ready to help. I wasn't looking for a principle reduction or anything like that. I simply wanted a interest rate that reflected the current rate. Bam, a couple of months later, I am refinanced. My interest rate went from over 6 to under 3. That is huge.

Also a few months back, I was fighting my work's human resources over an arcane policy that really wasn't employee or recovering patient friendly. My goal all along this cancer ride has been to work as much as possible. They city's policy, though, isn't necessarily geared to the same goal.  I was getting no where in my attempts to reach a solution with the H.R. folks. So I took to twitter.  Next thing you know, I was contacted by a local reporter and a city councilman, wondering what's up. I also heard from my bosses that angry calls were coming in from City Hall with people wondering what the heck I was up. Folks were pissed, they don't like to get called out. Those were some interesting interactions.  The problem never got resolved, but I shelved my fight, given I'm back at work full time and the issue is not an issue. It may rear its ugly head again. And, really, the City should update its policy to reflect what an employee needs to recover from an illness. I know of others who have been impacted by this policy.  In March, I am hosting a Cure Talk panel discussion about working and cancer. I want to get a representative from the local cancer legal resource group. I think this is a massively important subject. How cancer patients are dealt with in the work place is a needed discussion topic.

These are just examples of the reach of Twitter or even social media in general.  But what outweighs it all for me, is the discovery of an amazing online support network. Through Twitter I get and give encouragement. Other myeloma patients cheer me on if I tweet something about my latest lab results. If I'm feeling particularly jacked up from my steroids, I can tweet that, and someone will respond back with a joke about how they manage their steroid high.  It truly is an amazing network. There is a network of fellow patients out there who I'd consider friends.  The thing I've learned about cancer is that it changes your mindset. Myeloma, for me, is something that now underlies everything I do. I feel great and from many people's perspective, I'm recovered and no worse for the wear. True but not true.  I 'd say you need to be a cancer patient or a caregiver to understand the complete mental aspect of all this. There are times I feel taxed by it all and am ready to take a mental vacation. I think I do a good job of balancing the emotions. But it is a huge help to have this network of fellow patients and caregivers who understand the impact of myeloma on our psyche.  I'm lucky to have it.

Just to be clear, I also tweet a lot of nonsense. I've heard  Twitter referred to a depository of brain farts.Again true, but there is value as well. You can find me at @mpg61

Merryll Saylan, Art and Wood Turning

Most of you know, but some may not know that my mom, Merryll Saylan, is a super talented artist/wood turner. I inherited about .0005% of her talent. I can barely draw straight line.  Anyhow, I wanted to give her a shout out for an upcoming show here in LA. Her work will be at the Craft and Folk Museum from January 27 to May 5 and she will be speaking on February 17.  Click here for a link to the press release for the show.  And below are photos of her latest work.






House Cleaning

It's Monday. Work holiday.  Martin Luther King Day. Inauguration Day. 4 years ago, we were in DC for President Obama's first inauguration. An amazing, historic day. Today just watching it on tv. Side note..I love DC. It's one of my favorite cities. The history and energy are palpable everywhere you go.

I swam for about 30 minutes today. Felt great. I continue to feel great. Just ate some scrambled eggs with sauer kraut. It's all about the kraut. Damn it's good. If you get good fresh kraut, it almost melts in the eggs like cheese. But it's not cheese.

Great Interview with Stuart Scott: Cancer Survivor, ESPN Sportscaster .

Stuart Scott is taking on his cancer for a third time. This is a great and motivating interview, in which he explains why he fights and how he fights. He is sending a big F U to cancer.



Saturday, January 19, 2013

Lab Work

Once a month, it's big lab time. Lots of blood and lots off pee. All in preparation for next week's visit with Dr B. I'm feeling some real fantastic results. #Visualization

Side note...it's damn crowded at the lab this morning.

Friday, January 18, 2013

Insomnia, Medicore Rage and Dex

Had treatment today. Dr Phan was super happy. "Happy, happy" as the dad says in Duck Dynasty. All is well. I got my giant dose of steroids. So around 6 pm the rage started to hit. Then at 8 I got tired and slept for 3 hours, the insomnia hit. I worked out in the garage at about midnight. Felt good. I'm trying a new weight routine that is kicking my ass. I never do squats, but this new routine requires squats while holding dumbbells over my head. As many as I can do in 30 seconds. My fricking thighs are sore. Not used to this. But, it's probably a good work out for the big climb and the 70 flights of stairs. Why am I am doing that? Matt Arms and I have been walking the stairs at work. Only 7 flights and I am huffing puffing after that. Multiple that by 10. My blood count is up pretty high, so at least I'm getting a good flow of oxygen through the body.

Today I also a little bit of a break through. I haven't been riding my bike much, even though I can/ I'm not sure why. Before all this, I commuted to work every day by bike. 10 miles each way. Today it hit me, that I really miss riding and pedaling. It's such a good feeling. And driving sometimes is so annoying. So back on the bike I go.

Lastly, in my head I'm weighing options for my next obsession, now that I'm on a Viking hiatus. On the list is Evel Knievel. While he may be no longer with us, I might be able to immerse myself in his achievements. No decision has been made yet. I might have to do a March Madness type bracket. Here's a Evel Knievel quote "You're never a failure until you fail to get up"

Wednesday, January 16, 2013

Also dot dot dot

Pat is another myeloma survivor and he maintains two blogs and writes some interesting stuff.

Here's a story about the perils about aspartame from Pat.   Click here to read

And here's something Pat wrote about patience.  Click here to read

Couple of links to share

Two things I want to share.

One is a story about Stuart Scott, a sportscaster on ESPN.  His cancer recently returned after a few year hiatus.  His words rings true and are motivating.  Click here to read 

Also, here is the blog of someone I've recently met and become friends with. Brad was recently diagnosed with myeloma and is taking a fighting and positive approach to the disease.  Click here to read

Mid Week Update

Wow, wow, wow. Feels like ages since I've seen a doctor. That's good. Tomorrow it's back to chemo and my giant dose of steroids.  Also getting a little mental health tune up tomorrow. My back is feeling better. Not 100%, but better.  My legs are less sore from the new workout I did. So that's good. My car battery was dead today. Bad.  No meetings at work today. Good.

Tuesday, January 15, 2013

Redemption

This Thursday, Lance Armstrong's interview with Oprah is being shown.  I'm not an Oprah person, but I am looking forward to the interview.  As we've all heard, he's finally admitting to using performance enhancing drugs.  Not really a surprise to anyone.  Cycling is a pretty dirty sport, so my opinion is he still won 7 Tours.  More important in the scheme of things is the work of Livestrong.  The organization has been a great source for me as I pedal my way through the Tour de Cancer.  I think Lance was so vocal about his cancer and showing that you can live an exceptional life after your diagnosis.  From my point of view, and I had this before I was diagnosed, he almost made it ok to be a cancer survivor. But that's just me.

But what's interesting is that he is getting blasted by the sports media. Blasted to pieces. I'm a bit perplexed.  Ray Lewis, a linebacker for the Ravens, is retiring after this season and he's being treated as a god.  Nothing wrong with that.  But what about his involvement in the stabbing murder of someone about a decade ago?  Apparently he''s done so much good since then, that all is forgiven.  That's all fine and dandy. There was no evidence to show he was directly involved in the murder, but hey, who really knows.

And this is what perplexes me. What makes something forgivable and what isn't forgivable?  I guess Lance bullied a whole lot of people to maintain his lie over the years. He absolutely trashed a lot of people.   If you combine his work with Livestrong with his current apology tour, should he be forgiven? I don't know, I'm just asking.

I guess there is a fine line between what's ok and what isn't.  BIll Clinton, Eliot Spitzer have both rebounded from their missteps to again be well respected. Can Anthony Weiner be far behind?

But what about us regular people? I'm pretty open on this blog. Pretty open, but not totally open.  In many ways, I think cancer has made my life an open book.  When you're in a hospital hooked up to crazy machines and peeing into a jug while people are all around you, you realize that you've got to be ok with it. And why not? It's just life. I'm ok with that. As I've said before, I'm more comfortable in my own skin.

But what if there are still some things out there that I can't or won't share? What if I have things I've done that I'm not proud of and that I'm not sure would be forgivable. What if?  I'm starting to think that everyone has secrets or lies that might never be revealed. That's just how it is.  It's absolutely hard to gauge how others might react. So what do you do? Keep it bottled up for decades?  Fight for the truth, even though you know that fight is a bunch of crap.  How was Lance Armstrong able to so ferociously fight the doping charges?  For many years, his self defense was so convincing.  Eventually, the evidence became overwhelming and he is finally acknowledging the real truths. 

Then the question becomes what's the motivation for revealing the truth?  Is it totally self serving? Is it to relieve the guilt? Is it simply because it's time to step up and do the right thing? Who knows.  It's quite a circle of unanswered questions.

Monday, January 14, 2013

Not All Fun & Games

I've been on maintenance for several months now. I've lost count actually.  And I'm doing great. Feel good, numbers holding steady or even improving, in the case of my kidneys. Right now I'm leading a fairly normal life.  Cruise control.  That was always the goal.

Yesterday I tried a new workout. It's part of my lean & mean in 2013.  It involves working out faster, lighter weights, less rest, blah, blah, blah.  I was beat while doing it and this morning I can actually feel soreness in a couple of places....a sign of a good workout.

But, I also did something yesterday that tweaked my back. That something is moving a laundry basket. WTF?  When I was first diagnosed, I learned that a lot of people discover they have myeloma because they break a bone, often in the back, while doing something routine, such as reaching for something on a shelf or carrying a laundry basket.

This morning, the back was still sore, but less so.  However, also this morning Gracie was jumping on the back wall.  We have new neighbors and they have two dogs that can get their heads above the wall and these dogs are constantly jumping up trying to get in our yard. It's annoying. So Gracie tries to match them. She can actually almost get her fat ass to the top of our 6 foot high wall. Well, I saw her jumping this morning and ran outside to get her. And bam, the back totally tightened up, almost took me down with the initial jolt of pain.  Right now, it's aching but a bit better.

I did the bone scan a couple of months ago. My bones aren't too bad. Some osteopenia, as I've mentioned. But nothing horrible.  But now, I'm going to be all worried about my back, waiting for it to feel better, hoping it's just a muscle tweak and not a broken bone. My rational side knows it's just a muscle tweak. It's happened before. The myeloma is under control, so my bones shouldn't be getting worse. They also ought to be holding steady.  But my irrational side thinks "here it is". Here it is, as in here is the myeloma rearing it's ugly head.  But that's just silly and not something I should worry about.  But it is a stark reminder that even though I'm on cruise control and feeling great, it's not all fun and games.  There's an underlying worry that I imagine all myeloma patients have. We have a work assignment to identify our work goals for 2013. I wonder if I can add, not worry about my myeloma to the list of goals.

Sunday, January 13, 2013

The Week Ahead

Monday blood work
Thursday Chemo
Friday 24 urine
Saturday blood work

BAM!

Friday, January 11, 2013

Today's Special Guest....Water

Water. H2O.  One oxygen atom and two hydrogen atoms. It can exist in a solid state, ice or gas.  It covers 71% of the earth's surface.  Nothing ground breaking here.

It's been said that drinking water is as important to our bodies as is putting oil in our car. Our parts must keep running friction free.   I drink a lot of water. A lot. Before my diagnosis I didn't. I drank a lot of diet soda. A lot. I drank coffee. Not a lot, but when I did I'd load it up with equal. A lot. 7 or 8 packets per cup. Studies are starting to show that aspartame, the main component of equal and many diet products, can be carcinogenic. I have three theories of why I might have come down with myeloma. The first theory has to do with bone surgery on my left foot that unleashed a torrent of toxins. Theory two is that I had way too much aspartame in my lifetime. Theory three is simply that shit happens. Well,when diagnosed, I cut out diet soda and coffee and equal. But for several months I'd still have an occasional sprite, 7 up, or lemonade, It was hard to go cold turkey on non water beverages. But those drinks have sugar. Cancer feeds off of sugar.  Nowadays I am almost purely a water drinker. I love it now. Water is pretty darn tasty. I'll have caffeine free tea or a beer on occasion. But I'm a water drinker.

For me drinking water is doubly important because I need to keep my kidneys flushed. Let's keep that water flowing to ensure toxins in my body are released.

I'm thinking about water because I swam today. About 30 minutes in the pool. A few months back, I was trying to swim regularly for exercise. It's a good overall body workout. I wanted to swim because it's non jarring and wouldn't strain my bones.  But then we did the bone scan and bone density tests. The results showed that I have mild osteopenia, a precursor to osteoporosis I'm kind of young for that. But I was told that in all likelihood the high doses of steroids were impacting my bones. A lot of folks with myeloma have bone involvement and are prescribed drugs to help strengthen the bones. But since I have kidney involvement, Berenson nixed these drugs. The kidney doctor thought he might have a solution that wouldn't impact  the kidneys. I can't remember the name of the drug, but Dr B also nixed that. He said that specific drug had been shown to feed  myeloma and could increase chances of dying. Fuck that. So my solution for keeping my bones strong is to do weight bearing exercise. Swimming is not weight bearing. Cycling is not weight bearing. Walking, running, weight lifting are weight bearing.  So I cut out swimming. I'm sort of an all or nothing person.

However, the thing is that since my diagnosis, I really want to be around water. Being in a pool is like heaven to me. I always liked playing a pool. But now I love it. In Mexico recently, I went in the freezing pool because I wanted to feel that liberating sensation. Before jumping in, I thought of Felix Baumgarten and his sky dive from the edge of space..the most amazing thing I've ever seen. If he can jump out of a capsule 24,000 feet in the sky, I could jump into a cold pool.

Like I said, water is massively important to me. I've gone stand up paddle boarding. In the spring I want go snorkeling and kayaking. I'd love to get a two person kayak for me and Leslie or for me and Gracie. I have a friend who teaches sailing. I want her to teach me how to sail. I've never ever wanted to learn to sail. But I do now. I go on a daily walk with co workers at lunch and we cross a bridge over the water. It's beautiful. They are talking about moving our office closer to the airport. I love airports, but I'd rather stay down by the water.

I've always been a fairly active person. I used to run a lot. I loved running. But then I started to get older and running caused pain in my hips, knees and ankles. No more running. That's simply a function of me getting older and me being not too light on my feet. Don't mistake me being active with me being athletic. I'm generally fairly clumsy. I'm Ashkenazi Jew after all. We're not athletes. Berenson is actually studying if Ashkenazi Jews are more genetically predisposed for myeloma. He took a blood sample from me to be included in the study. Thus, I like to move and do stuff, but I'm not super athletic. Swimming, therefore, is almost a perfect exercise for me. It doesn't jar my hips, knees or ankles.  All I have to do is think about my form and count laps. I can do that. Swimming gives me all kinds of time to do math in my head. The only thing missing is music. Someone needs to invent an underwater ipod type device.

I want go back to my question about myeloma numbers for a second, I was sitting in a long ass meeting yesterday. Folks occassionally like to get into the technical details of things. It's not for me though. I kind of gloss over when that line of discussion starts. It's not that I can't understand it. I think I'm sufficiently smart to get it, although sometimes I think I've over estimated my intelligence. I think chemo has also impacted my ability to think and focus. The point is, with work as with myeloma, I don't care to know details. Just give me the results. Just tell me what I need to do. I'm impatient, with perhaps a touch of a.d.d. Detail, smetails. I'm not too handy because I move too quickly.  In summary, I see overlap between my understanding of my myeloma numbers and my approach to work. Results, results, results.

Back to water. It's just interesting to me how important it's become to me. I think the takeaway from all of the above is that I swam for 30 minutes today, I'm back down under 200 pounds and getting back in shape. Oops, one more aside, Phan loves for his patients to gain weight and eat. That's a good sign for cancer patients. I need to find balance between weight being good and me being sensitive about my weight and fitness level. We're getting there.

Water=life.

Thursday, January 10, 2013

Trip Down Memory Lane

Ah, good times. Here's a photo from last year. Port on the left, perm a cath on the right. The port remains but the perm a cath is long gone.

Quick Update

Not much to say. Got my latest labs yesterday. White blood cell count up. Hemoglobin up....11.9. Normal is 13-15. Below 10, I get a procrit shot. Below 8, it's transfusion time.  11.9 is awesome. Explains my increased energy.  Thus not a single, itsy, bitsy, little doctor appointment. A full week at work.

Tuesday, January 8, 2013

Fear the Beard

Six short years ago I had my 45 by 45 list. 45 things to accomplish before I turned 45. On the list was growing a beard. Check.  What's interesting, time-wise, is that six short years is actually a lifetime ago. And in many ways, six years ago wasn't even my life. In many respects I've been reborn. Not in the Christian born again sort of way. But reborn in that my view of life and my role is brand new.  What's also interesting is that every day is almost like a new lifetime.

But enough of this spiritual mumbo jumbo. Let's talk about the beard. Since growing the beard for my 45th birthday, it's come and gone many times. I'll let it grow, then I'll shave it off.  About a month ago I shaved it off, and this is after having it for only a few weeks. I had a beard at our wedding in September, but then shaved it off. Leslie generally is ok with me having it or not having it. But she would like a little warning when I shave it off.  However, when we went down to Mexico a few weeks back, she wanted me to grow it back, given it made me look a bit tougher.

And that's the funny thing about the beard.  People are not shy at all about telling me what they think about me with facial hair or no facial hair. It's surprising how many comments I get.

It does look pretty good. I've got a fair amount of gray in it though. No gray on top of my head, but definitely gray in the beard. Brief aside, I never lost my hair doing chemo. I've got some good family hair genes.  Anyhow, it looks good, has gray, but it  gives me an extra boost of confidence and makes me look a bit more mature. With the myeloma, I kind of feel like an old man. My sense of my manhood has taken a hit over the past 20 months. That sucks.  Frankly and curiously, the beard makes me feel a little more whole.  However it also makes me look more my age, and that's why I'll shave it off on occasion. I look younger without it and sometimes that is a good thing...ego wise.  But sans beard also highlights my round face and expanding jowls, a result of high doses of steroids. Conversely I recently took a new driver's license photo. I had the beard and fairly long hair. Holy shit, I look like some crazed killer now on my license. Good and bad I suppose. After getting the new license I cut all hair off.

My boss and coworker have beards. Their beards have been consistent for many years. No back and forth. And, as you can imagine, the comments about a beard being a prerequisite in my work group are common.

My nephew Dillon has a beard. His is pretty powerful.  Hispters have beards nowadays and I'm not looking to get grouped into the hipster category. Oh wait, I was yesterday. Talk about an off base comment. Dillon's no hipster either by the way. He's an individual, 100%.

But after being clean shaven for a few weeks, I'm bringing the beard back.  Hockey players will go without shaving during the playoffs. It's a superstitious thing.  So now, after the holidays, I'm back in fighting mode. Ready to fight myeloma even more. Ready to not take shit from anyone. I'm an individual and I'm rolling.

Monday, January 7, 2013

3.7

Creatinin continues to drop! Woohoo!

Understanding Kidneys.....Damn, Bad Idea

I've said this before: the thought of having to do dialysis scared the shit out of me. Once when seeing Doc Zoller, I walked through the dialysis center and it was depressing with a capital D.  In my mind, that crossed the line with what I could tolerate. Zoller at one point wanted me to start dialysis and I opted not to.  Now with my kidneys improving, thanks to a reduction in protein produced by the myeloma, dialysis isn't really on the table.

But now that Doc Levine gave me the go ahead to eat some different foods, I decided I should get smarter about the kidneys.  I want to know how they work and what they really do. For the past year and a half I knew that I needed to minimize phosphorus and potassium in my diet. We've done that.  But frankly I didn't understand the whole physiologically of it, if you will.  Levine gave me a book to read called Living Well with Kidney Disease. I've been slowly reading it the past couple of days. And damn is it scary. Dialysis and all that....frightening.  The impact of phosphorus and potassium on  kidney function and the body is huge.  So believe me you, I'm going to be even more of a hawk on what I eat and I'm gonna keep this cancer under control. Those kidneys must work.  

It's kind of like many things. You want to know, but then again you don't want to know.

Sunday, January 6, 2013

Saturday, January 5, 2013

Now what?

Vikings lost. Season over. Now what do I obsess about?

Multiple Myeloma Numbers

I have a couple of questions. And I feel stupid for asking. As with any MM patient, I am keenly aware of my numbers. I anticipate my weekly blood work to see what my white blood cell, hemoglobin, creatinin and platelet counts are. I also look at other things... Phosphorus, calcium, etc. Monthly I do a 24 urine test. We looking at protein in the urine and then a Upep test tells me what percent of that protein is bad protein. I know my numbers by heart, and I try to guess what each test will show. i did blood work yesterday, and I predicted creatinin around 3.5. I'll find out Monday. i see Dr Phan every other week, when I do my maintenance chemo. This week he was thrilled with my numbers and how I'm doing. Berenson is once a month. I generally have an idea what he'll say, because I have seen my numbers before I see him. Last week, was my monthly visit with him. He was amazed with the recovery of my kidneys. The kidney doctor is once every two months. Saw him yesterday and got the go ahead to reduce my food restrictions.

There's a real powerful online myeloma community. I've met and come in contact with other patients. It's a powerful support system. It's actually one of the positives that have come from having myeloma. I'm 20 months into my journey, getting to be an old hand at this. But at times i feel uninformed and a little ignorant anout the technical aspects of the disease. This brings me to my questions.

What is m spike? With Phan or Dr B we never discuss this. How about free light chains? What am I looking for? We used to discuss my light chains, but it's not even a topic any more, so I'm not sure what I'm looking for. I've heard people say they have iGa MM. I see that number on my monthly labs. But again, I'm not sure what I am looking for. Am I iGa or iGb? I know I was stage 4 when diagnosed, the disease had signficantly progressed. But does all this even matter?

Maybe someone could help. i could ask my doctors. Dr. B will say it doesn't matter. Dr. Phan will explain, but I guess I am looking for a lay person's definition. As I said, I feel pretty atune to my numbers, my condition and what I need to do to stay healthy. As an example, today is acupuncture. No doctor prescribed it, but I am positive it is helping my kidneys recover. I spend a half hour with needles in me, as relaxed as can be, visualizing energy healing my body. Diet is key to me, which is why it's massive news that I can add nuts and beans to my diet, and get away from hormonally challenged meat products that can negatively impact my body.

Maybe understanding all these other numbers is irrelevant. I know what I need to know. But maybe I need to know more. To know or not to know, that is the question.

Purple Friday Doing Dishes

Every bit helps. Go Vikings!

Friday, January 4, 2013

Kidney Doctor Visit

We saw Dr Levine today.  Only see him every couple of months. But today we went in hoping for changes, given my continued improvement of the kidneys. And....Yes! I can add alternative sources of protein to the mix. Nuts and beans can replace meat. We need to watch my phosphorus intake because that can strain the kidneys and the bones, by pulling calcium into the organ.(I think) (Note: Levine gave me a kidney book to read, so I can get my facts correct) Nuts and beans have phosphorus, but I am already taking a medicine that clears phosphorus and if I watch the numbers on what I eat, I should be ok. We also reduced the amount of sodium citrate that I take. It's a nasty tasting liquid that I take after each meal. Now I can just take it after two meals.  Great news all the way around. We'll see Levine again in two months.

Levine is at Cedars Sinai, so we had lunch in LA today, El Cholo. Awesome food. We also wore our purple today.And we also visited one of Phan's ex nurses, who now works at Cedars.

Did basic blood work at Levine's today (CMP and CBC). Should get results Monday and that will show my blood count and creatinin level. If my hemoglobin is too low, then it's procrit shot time. But haven't had one in several weeks. Although with chemo yesterday, my count could be low. We shall see.

Here It Is

Insomnia. Welcome back. Seems like quite a while since my last treatment.  But it was back to chemo yesterday and insomnia tonight. I worked out last night because I couldn't sit still. So glad I have the elliptical at home.  Been watching a lot of ESPN's 30 for 30 documentaries while I work out. ESPN can be annoying at times (see Chris Berman), but the 30 for 30 films are awesome.
Today coming up, we drive up to Cedars to see my kidney doctor. I'm hoping for two things....no traffic and a relaxation on my diet restrictions. Fingers crossed. It's about a 40 mile drive and can be smooth at times and real congested other times. Given my potential roid rage, I want it to be smooth. Hopefully with it being a holiday week, it'll be light. Maybe I'll have Leslie drive.

It's Purple Friday again. Vikings take on the Packers again. Saturday night. So flipping excited, which often is the precursor to disappointment. Not this year though. It's a special, magical year!

Thursday, January 3, 2013

Happy doctor=happy Matt

At the start of each new cycle, I do a little office visit with Dr Phan. Today is day one of a new cycle and Dr Phan is super happy.  We're keeping the beast at bay. Happy happy.

Wednesday, January 2, 2013

20 months and counting, 2013 and a look ahead

Welcome to 2013. I didn't take any time off from work during the holidays. But today really feels like I'm back after a vacation. Time to get back to work and refocused on the job at hand.

I've said this before though, I think.  It's getting hard to do the hum drum stuff. For much of the past year, just coming to work was sufficient. It was my connection to the real world and my escape from cancer.  But I've been full time for a few months and the meaning of my job is getting lost.  Generally I like what I'm doing. But, and here's that word again, the passion isn't there.  The functioning of the port is meaning less and less to me. Forecasts, projections, memos, meetings....blah.

Today is January 2. 20 months since my diagnosis. Wow, that is crazy. I feel great, getting back into shape, kidneys improving, cancer being kept at bay.  All positives. I've got a puffy face and expanding jowls from the steroids. I bruise easily and bleed like a dickens from any small little cut.  But, I'll tell you what, I'm so damn lucky to be where I am at with this.  The plan for 2013 is to keep it going. Get better, get fitter, get my head screwed on even straighter, and all that. No specific resolutions. Just goals. I must learn to play an instrument this year. I must write my screenplays. I must spend more time in and around water. I must get back on my bike.  I must continue being honest with myself and other people. I must continue to appreciate every day. I must not get hung up on what ifs.

This week I have maintenance chemo. Pretty easy at this point. Friday we see the kidney doctor. The goal is to get some relaxation on the diet restrictions. I'd love to have a banana or marinara sauce on pasta or some nuts. That's not asking too much is it?  Saturday I'll get some acupuncture and also Saturday is the key thing....Vikings playoffs. A rematch against the Packers.  Remember to wear your purple this Friday!!!

One last thing, I wouldn't mind seeing this blog get input and thoughts from other myeloma or cancer survivors. I.e. guest writers are welcome. A post here, a post there might be cool.

Tuesday, January 1, 2013

Happy New Year

Happy new year everyone. Thanks to all for support, prayers, well wishes, understanding and all that. 2012 was such a better year than 2011. And the motto for the year is Lean & Mean in 2013.