Wednesday, July 31, 2013

2,632 vs 8

2,632 is Cal Ripken's record streak for consecutive games played in baseball. It's a streak that might never be broken.

8 is my current streak for consecutive days riding to work. Today was day 8. Unfortunately the streak will end tomorrow.  I need to drive to work. It's chemo day. My itinerary is work, gym, home, chemo. bam, bam, bam, bam. I need my car to make this all work. Friday we'll start a new streak.

Well, both Cal and I know that sometimes you need to take yourself out of the lineup.

Forget Myeloma For a Moment, Let's Watch Some Bears

Fun stuff....
http://www.youtube.com/watch?v=AihvuZiDhsg

Blog from Myeloma Beacon

Karen Crowley recently posted the following post which discusses when and how you tell people about your myeloma....

http://www.myelomabeacon.com/headline/2013/07/30/myeloma-mom-undercover-cancer-patient/

Sunday, July 28, 2013

Adrian Peterson with Helmet Cam

This is pretty cool. Several minutes of practice via a helmet cam.

Numbers

-  4.  Went stand up paddle boarding yesterday. Back in the ocean. Given my last experience, my goal was to keep the number of falls to less than 10. I hit that goal and then some. Only fell 4 times. Not bad. It was a good day. Had a couple of sea lions swim around me, within 10 feet. 

- 6. Riding to work tomorrow.  It will be the 6th day in a row. And it will be the 9th day out of he previous 10.

- 15. chemo thursday. Day 15 in the latest maintenance cycle.

- 27. On August 2, I'll hit 27 months since my diagnosis. Let's keep on trucking. 

- 3. Number of bachelors left on the Bachelorette. 

- 2. Two part Bachelorette finale this week.

My Early Super Bowl Prediction

You heard it here first. I'm calling Vikings over Bengals in this year's Super Bowl.

TIps on Trying to Avoid Myeloma Progression

Don is a 10 year myeloma survivor. After his diagnosis, he set a goal of running a marathon in every state in the country.  He hit that target and is now aiming for 100 marathons. He has several blogs, including one on his myeloma journey.  Here is a link to a recent post, in which he discusses tips for avoiding myeloma progression.

http://myelomahope.blogspot.com/2013/07/avoiding-myeloma-progression.html

Thursday, July 25, 2013

Hello My Name is Matt and I Have Cancer

This is my off week from chemo. My most recent treatment was Thursday of last week. Afterwards, I had the typical two days of being utterly wired, followed by two days of being super tired and emotionally weak.  As I wrote recently, the post chemo/post dex crash lately has been more difficult. It's lasted a bit longer and I've been more tired. This week on Monday and Tuesday I was tuckered out.  I didn't have a lot of excess energy. I even took naps at lunch time on my office floor. But by Wednesday, I was good. Back to my energetic self.  Berenson adjusted my schedule on taking Medrol, a steroid in pill format, to try and lessen the crash. Didn't really work this week.

I must add, though, that even with the tiredness I rode my bike to work every day this week. In fact, I rode 4 out of 5 days last week, only missing on the day I went from work to chemo. I needed my car. So we have 8 out of 9 days. Even with chemo and post chemo, I'm making the ride. Strength and stamina on the bike has come back. Hills, speed, distance....all feel easy. Riding to work, even when tired, isn't a chore at all.

Also of note, I've been riding to work with two co-workers just about every day. This is new. In the past I usually rode by myself, I liked the solitude. But now I like having the riding partners.  It's good chit chat time. Today  I summarized the Bachelorette for them. 

I now ride with Alex who has worked at the port for a few years and has been real supportive of my journey over the past couple of years. And I ride with Paige, who is fairly new to the port and didn't know my health situation.  It's been great riding with them. It's like a friendly car pool, but on two wheels. As I said, on my chemo day last week I didn't ride. I simply told Paige that I couldn't ride because I was leaving work early. That sufficed.  The next day she asked how my afternoon off was. Well, that's when my mental gears started shifting. I couldn't just say my day was ok. But do I say I was at chemo?  Do I say I have cancer? I wanted her to know, but not to feel sorry for me or anything like that, but simply to explain where I was. I hadn't crossed this barrier before. What do we tell someone new we meet about our cancer? Is it even pertinent? I'm riding my bike, I'm working and life is pretty normal. Myeloma doesn't really come in to play, other than getting chemo, other than experiencing mood swings after chemo, other than the millions of bruises on my legs because of my low platelets.  Besides the doctors, nurses, fellow patients, and work acquaintances I haven't really met a brand new person in years.  What do we say? What if you're dating? What if you're going for a job interview? What if you can't attend an important meeting because you have chemo at the same time? What if you can't go to happy hour? Am I making more of this than I should?

Anyhow, I told my Paige that I had been at chemo, that I have multiple myeloma. I decided it's pertinent. Not too pertinent, but pertinent enough that it warranted bringing up.  She asked a couple of questions and that was it. End of discussion.  This past Monday I was really feeling the crash and was not in the talking mood. But the three of us still rode. I let them do the talking and I hung back a couple of bike lengths.

For work, I deal with a whole lot of contractors and consultants and oil field workers. They know that I'm unavailable every other Thursday afternoon. That's all I've told them. No details. That seems to work.

Also at work, for 8 weeks this summer I am a mentor to a high school student. She's part of a program that the port does every summer where two dozen local high school students work with a mentor, earning money and gaining experience. I have to admit I was absolutely against participating in this program.  I saw it as a drain on my limited time and something that wouldn't be worth my effort.  However, I was asked to take one specific student, Raslyn, who will be attending UCLA in the fall, is planning on going to medical school and who volunteers regularly at Long Beach Memorial Hospital, a place I've spent a lot of time. I couldn't say no. And it's been awesome. She started about 3 weeks ago.  I had the same dilemma with her. What do I tell her about my occasional mood swings, about missing work every other Thursday? I figured I couldn't do what I do with my co-workers after I've had dex, which is warn them to avoid me.  I'm supposed to be a mentor, I can't just snap at a high school student. I decided I'd tell her my situation. I figure part of being a mentor is being honest.  She had no questions.  Today however, we got into a discussion about work and people with different agendas and how you deal with them.  I relayed some things I learned over the past couple of years. Myeloma related lessons, but totally applicable to work. She did ask a couple of questions about my health and that was it, end of discussion.

I am now a strong a proponent of the intern program. I have my student while a couple of my co-workers also have students. These 3 interns happen to all go to the same super advanced school here in Long Beach, called Cams.  These 3 are super smart, super motivated, super nice. One of them, a high school junior, was recently appointed by the Governor to the California Board of Education. How do we compete with that? We don't. I don't. Every Thursday, the six of us meet and one of us presents what we're working on, followed by 30 minutes of the kids asking us whatever they want. Today was my turn to present. Next week I am taking them on a field trip to the oil islands in Long Beach.  These are man made islands off the coast with active oil production activities.  In the free form discussion they wanted to discuss college.  I had a little heads up when the day before the 3 came my office to tell me that one of them wanted to talk about relationships. What? I am even allowed to talk about that with them?  I tried to answer, based on what little I know and I told them that no matter what, to stay true to themselves. Don't sacrifice your values for somebody else. Seems like vague, harmless enough advise.  But while chatting with the students, it hit me that I really like this. The kids are so cool. They're smart. They're funny. They're ready to attack the world. This being a mentor might be more beneficial for me than it is for them.  It's forced me to step back and look at how I deal with work & life & stress & success & failure. It has reminded me to be thoughtful about what I say and do. I think I mentioned before that I was concerned, as I continue to feel better, that I might be falling into old patterns. Letting work get to me. Letting people get to me. Not good.  Serenity is the goal. Focus is what I tell myself daily.  I haven't told the other two students about my health.  I might.  I've only told Raslyn, and I would guess they've spoken about it. I'm fine with that.

But like I said, this has forced me to think about how I describe myself to new people. I easily and regularly tell people about my love of the Minnesota Vikings. I talk about tv, about my dog, about Leslie, about family, about everything.  I'm generally an open book. But the cancer chapter is a bonus chapter. I'm curious what other survivors tell people they just meet.  Maybe we should just wear "Hello my name is .... and I have myeloma" badges. Problem solved. Seriously I want to know if other folks even think about this.

One last note, Saturday will be my 3rd go at paddle boarding. Last time I went it was in the choppy ocean and I spent a lot of time in the water. This weekend, it's back in the ocean and my goal is to fall no more than 10 times. It's a modest goal, but I think it's attainable.

Wednesday, July 24, 2013

Before and After

We recently updated my profile picture at work. It was pointed out to me that there has been a massive change.  Frankly I don't even recognize the before person. The before picture was taken perhaps 5 years ago.

Before


After

Interview with Kathy Giusti, Founder of MMRF

I've been wearing a blue bracelet from the Multiple Myeloma Research Foundation (MMRF) since my diagnosis.   Below is an interview with the founder of the MMRF, Kathy Giusti, who also happens to be a two decade long survivor of myeloma.  She and the MMRF are doing some great things. Give it a read...

http://www.foxbusiness.com/business-leaders/2013/07/22/fighting-for-her-life-mmrf-ceo-creates-launch-pad-for-multiple-myeloma/?cmpid=cmty_twitter_fn

Friday, July 19, 2013

Atmosphere, Minnesota and Good Stuff

This is 100% not myeloma related. But it is my 100% absolute new favorite, follow this link, give it a listen...the whole thing

http://www.youtube.com/watch?v=xvugcOOUdJc

Bikes and Dr Phan



Note that despite everything, riding to work today will mark 4 out of 5 days for riding this week.   Not bad. Not bad at all. A century (100 mile ride) is absolutely in my future sometime early 2014. I told Dr Phan this and he'd love to do it with me. He is an avid cyclist. He even suggested me, him, his wife and Leslie do it together as a double date. I love Dr Phan. For me, he is the most amazing and real doctor I have ever met. And to think, he is my doctor only because he just happened to be on duty when I was first admitted to Long Beach Memorial Hospital some 27 months ago. Sometimes fate will intervene and help push you on the right path. Couldn't have done any of this without Phan. Such a great person and he has such a great staff that reflects his personality. Thank you, thank you.

New Maintenance Cycle

This afternoon was chemo. And that means dex. And that means insomnia, anxiety, irritability. Sometimes I'm ok with this. I'll use the wiredness to my advantage. I'll work out. I'll write. I'll plan. Not this time. This time it is pure anxiety and irritability. Wow. I've been doing some pacing. I did get a couple of hours of sleep, but that's over. I don't like to take sleeping pills, so I am kind of stuck. Whew wee....hold on everyone. In a couple of hours I need to get ready for work. I'll ride to work on my old univega. It's heavy as all heck, but that'll help burn some energy. Oh and I'm hungry. But I can't just eat and eat and eat. I worked too hard to get into shape. Plus I don't have any cereal in the house. Cereal is my favorite dex food. Dry. No milk. In a glass. Lately Puffins original or cinnamon from Trader Joes is tops. So good. Many many years ago, i had the best t shirt. It was a cereal shirt. A white t shirt with a 6 by 6 matrix of different cereals on the front. Loved that shirt!!!!!

Tuesday, July 16, 2013

Bring It

This post has been a week in the making. My mental state has been all over the place. I'll try and summarize it all here.

First let's get to the perfunctory information:  Last Friday was my monthly visit with Dr Berenson. All is good. My numbers are holding steady. 24 hour protein is as low as it has been, 1080. The paraprotein, the bad myeloma-produced protein, is 53% of the total. Do the math and we have a real good number. Blood counts have been low, not unusual. Creatinin still moves around 3.6 and 3.8. Not bad, but I'm still looking for a lower number.

I did mention to the doctor that I'm experiencing a harder crash lately from the dex. I take a second steroid, Medrol, at home, but he has me off it 2 days before and after the dex. The goal is to not get too wired on steroids. Because of the crash, we'll now ease back onto Medrol sooner. We'll see how that works.  Nonetheless Dr B is real happy. I'm real happy. We all are real happy. 

I also saw the kidney doctor, Levine.  I visit him once every 2 or 3 months.  He's also happy. He's also the doctor who a few months ago told me to lose weight. I don't think he remembers. I reminded him and said I followed his instructions.

Let's talk about my drive home from Berenson. Typically Leslie comes with me Dr B. She couldn't last week, because we had a broken water pipe under the master bedroom. Water. We had a lake under our house. So last Friday she stayed home to deal with plumbers, demo contractors for the water damaged floors and walls, and insurance. Driving home from Berenson, I actually didn't know the extent of the damage yet.

Let's also talk about my job. I work as a planner at the Port of Long Beach.  We are gearing up for the start of construction of a billion dollar bridge. Before construction of the bridge can start, a whole lot of active oil drilling operations and previously abandoned oil operations must be relocated.  My job is to coordinate this relocation which is going to cost over $200 million.  Almost daily I make million dollar decisions. It's stressful. It's challenging. Every day is something new and I love it. It's pretty high profile and I take a fair amount of heat for the costs. I don't mind. I actually enjoy it. I think my approach has been shaped by my myeloma experience.  Paitence, calm. The problem is each day, each week, I get busier. I usually work during chemo. I often work at night or weekends. But it's a pace that isn't sustainable. I am trying to get help.

The point I'm trying to make is that while driving home from Dr B, I had myeloma, home issues and work on my mind. For a fleeting moment during the drive I felt like I was feeling overwhelmed. All this time I thought I could handle it all. But maybe I couldn't. So it was pep talk time.

The drive home from Berenson is 30 miles. On a Friday afternoon in L.A., we're talking two hours. It gave me a chance to define and refine my pep talk. There's a whole bunch of people who say Fuck Cancer. I get it. I said it at first. But for me, now I can't quite say it about my circumstance. I feel like it gives it power and control. I can't let the myeloma control me. I can't let any of this life stuff control me. I need to be in control. I need to control the myeloma.  It's kind of a new mind set for me. Driving home, I vowed to take control of everything. I can handle it all.  My pep talk gave me my new motto, which is: Bring it! I'll fuck you up.

Bring it myeloma. Bring it house. Bring it work. Bring it whatever. I'll win. I'll fuck you up. To my mind there is a difference, ever so slight, between saying Fuck Cancer and saying I'll Fuck You Up Cancer. I'm going to work out harder. Ride my bike stronger. Think more clearly. Eat better. Be clearer with my words.  Is this making sense?

Anyhow it turns out our house was more damaged than we anticipated. There's a hit. Then Saturday night I got a nasty bug from something I ate. I started to feel a horrible pain in my gut early that night. My first thought, was Oh Shit, there go my kidneys. Nausea is one symptom of failed kidneys. Damn, maybe they finally gave in. Then the throwing up began and it kept going. I might have gotten more sick Saturday night than I ever did during my two years of chemo. How about that? I woke up Sunday with my stomach feeling better, but with my whole body aching and feeling beat up. I had never had food poisoning before, but I'm thinking that's what it was.

I should note we were staying at Matt and Rich's house given the noise from the fans, blowers and heaters at our house. Suffice it to say, on Sunday I wasn't sure I'd be able to stick with the new motto. Perhaps I shouldn't have said Bring It. Because the shit was brung. And it might have gotten the best of me. I felt utterly defeated.  I slept about 20 hours Sunday. Nice house guest, right?

Monday I woke up and forced myself to ride to work. I wasn't going to let this crap stop me from doing what I know is vital to my recovery and my mental state. I had to ride. Today I rode again. Today I had a couple of meetings, where I clearly and definitively expressed my needs for continuing to do my job right. I didn't hesitate. I didn't stammer. I had to do it.

Our home is going to be messed up for maybe a month is my guess. That sucks. But I'm staying here. Routine and normalcy is so important to me as I continue to recover from the myeloma. I need to know ahead of time how my days and weeks will pan out. I've definitely developed a hint of being a control freak that I never had before. It keeps me going. It keeps me focused.  I really need to compartmentalize things. Not sure I was able to do that several years.  I can now. A new person at work said that the other Matt in our office is nice and friendly, and I'm the serious Matt. It wasn't meant as an insult and I didn't take it that way. But I did think: What the fuck. I've never heard that before. But I'll take it. I feel successful hearing that. I'm doing my job. I'm controlling things. And that's ok.

Myeloma, as my fellow survivors know, can be an up and down battle. So many things to think about, to worry about. We all strive to find ways to stay positive and focused. And that's what I am trying to do.

Until later, that is it.

Monday, July 15, 2013

All is well

Myeloma-wise I'm doing great. I'll give a more detailed update on everything in the next day or two. 

Sunday, July 7, 2013

Lost

Any Lost fans out there? It's been off the air for a few years now. But it was a really great and addictive show. Yesterday I used my dex tiredness to watch a whole bunch of stuff. 3 episodes of Breaking Bad, to get me all caught up and ready for the final 8 episodes that start August 11. A couple of episodes of Arrested Development. I only just recently started watching it, so I'm still on season one.

And I watched the finale of Lost. It's been a while since I first watched it. Pre-diagnosis for sure. But wow, real powerful. It really got me thinking. I had some crazy, happy, scary, realistic dreams when I was first diagnosed.  Some of the dreams were so real that I woke wishing I was back in my dream world. Anyhow, the Lost finale seemed to really capture the interaction between reality, perception, dreams, and fate. I'm probably going to have to re-watch the entire series.

Cure Magazine...Insomnia

Steroids, chemo drugs, leg cramps, and a whole bunch of other stuff lead to occasional insomnia. I've always been a light sleeper, but now my sleep patterns are goofy. Still an early riser though, That hasn't changed.

Here's an article from Cure Magazine about the topic and some things that cancer patients can do to combat insomnia. Proper sleep is a key component to recovery.  Read on...
http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/2127

Kenechi Udeze..Blood Cancer Survivor, Minnesota Viking

Here's a short article about Kenechi Udeze. Several years ago he was a starting defensive end for the Vikings. Now he is a leukemia/blood cancer survivor and working towards getting into coaching, still with the Vikings.

I like stories of survivors embracing their new renewed lives.

http://www.twincities.com/sports/ci_23436989/minnesota-vikings-kenechi-udeze-returns-coaching-fellow

Saturday, July 6, 2013

It's a Marathon. I don't like Marathons

Dr. Berenson likes to say that myeloma treatment is now a marathon and not a sprint. There's a lot of treatment options. Right now we've got a good maintenance routine going and I feel great. Well aside from the crash from dex that has left me with roid rage today. I take another steroid, Medrol, at home, so today it's a double whammy. Coming off the dex high and on the medrol high. Think I'm in control of my emotions today? Guess again. The last couple of treatments, the post dex crash has been hard. Harder than usual. Not sure what's up with that. Number wise, nothing has changed. Everything looks good. I'm a little low on blood right now, but I'm used to it. Tomorrow is my monthly 24 hour urine collection. This is pretty common for myeloma patients. We'll get results later in the next week and Friday is my monthly Berenson visit. I am hoping that my hemoglobin jumps up a bit, so I don't need to go in for a procrit shot this week.  I've dropped about 25 pounds over the past year. And it turns out that with less belly fat, the procrit shot in the stomach hurts a bit more now. Mind you I'm quite used to being poked, but if I can skip a shot, all the better.

Today I did go the gym. My plan was weights for upper body, followed by lap swimming for maybe 20 minutes. My workouts are pretty routinized. They need to be. But, damn it, the pool today was invaded by water aerobics. The entire pool! Can't they leave one lane for swimming?  Right there, a bad start to the day. I absolutely plan to lay low today, The couch and directv are my best friends today.

Back about ten years ago or maybe more. Yes definitely more. Let's say 14 years ago I was training for the LA Marathon. I was a pretty avid runner. I had good stamina, some speed, some strength.  The way marathon training works is every week you have one long run. Each week that you get closer to the marathon, your long run gets longer.  I was about a month away from the marathon and was able to crank out a 20 miler. My last long run before the marathon was going to be a 23 mile run. I usually ran on my own. But for the 23 mile run I ran with a group of experienced marathon runners. I'd never run a marathon before. Suffice it to say their pace during the 23 mile run was quick. Quicker than I was used. I did my darndest to keep up with them. By mile 18, I hit the wall. I was beat. I tried to keep going, but it was too late. There was no way I'd keep up with the other runners. I did persevere and finish that training run. But it was agony. I walked. I ran. My feet hurt. My hips hurt. I was miserable. I was cussing all the way to the end of that training run. 3 weeks before the LA Marathon. But that training run made me hate running. It was such a horrible experience. So when the marathon day arrived, I opted not to run. In fact, I didn't once get a training run in after that 23 mile run. Not even a short 3 or 4 miler. I was done with running. Since then I've run maybe 5 times total. There was a hung over 10k in St Louis one St Patricks day a few years back. And I've given it a shot a few other times.  It's hard to explain, but the nastiness of that training run sapped my love of running.  I shouldn't have tried to keep up with the other runner's pace. Lesson learned.

So when Dr. B talk about myeloma being a marathon, I am reminded of my inability to follow through and finish the one other marathon I planned on doing.  Mind you, I didn't plan on doing the myeloma marathon. It was rudely slapped on me. So in this case, I don't really have a choice, I need to follow through with this marathon. No stopping.  I'm a fairly big fan of track and field. The Olympics? Love em.  I like the middle distances, such as the 800 meters.  It's a combo of speed, strength and stamina. The 400 used to be like that, but now it's basically an extended sprint. The mile or 1,500 meter is pretty darn fun to watch as well. In high school I did run track a couple of years. But I did the long jump and triple jump. What slow Jewish kid with no hops would do those two events? Me.  Meanwhile just messing around on my own, I could run a mile in the low 5 minutes. Why I didn't focus on the mile is a mystery. Why I do a lot of stuff is a mystery. I'm not sure how my brain balances the rational and the irrational.

The port has a summer program where we bring in high school students for  a summer job and to provide some mentorship.  I was asked to participate and fought hard against it. Me a mentor? Ha! Learn from my mistakes. Plus I thought I was too busy to deal with a high school student. I was convinced to participate in the program. A specific student was identified for me. She's a recent graduate, will be attending UCLA in the fall, has volunteered at Long Beach Memorial Hospital and generally seems like the kind of over achiever that I'm not. I figure I can learn something from her. She started the other day and so far so good. Maybe I can be a mentor. But what is interesting, in an orientation for mentors a couple of weeks ago, we were asked to stand and say who our mentor was. Everyone stood up and was able to identify someone immediately. A parent, a boss, a teacher. Me? I was stumped. Who has been my mentor? I really struggled to come up with someone. Is it too late for me to find a mentor?

And I guess that brings back to the marathon analogy.  I'm 51. I have an incurable cancer. Turning back the clock is out of the question. This is where I'm at in the race. Ironically a marathon is just over 26 miles. 26.2 miles to be exact. I'm at just over 26 months since my diagnosis. 26 months and 4 days. Sounds like that is close to 26.2 months since my diagnosis. Like I said, my mood today is impacted by my most recent treatment. But I need to change my pace. I need to refocus on my stride. I need a target. I need an event. Follow me? Or am I making no sense here?

I'm going to keep going. Steady movement is key. No wasted movement is also key. I can't waste energy on non vital crap.

Wednesday, July 3, 2013

No Port No Problem

Live blogging from chemo. Hooked up. The chemo lineup is 30 minutes anti nausea followed by 30 minutes dex (steroid) and
capped off by rapid iv push of velcade. Today I also get a procrit shot to help with blood counts. 

Monday, July 1, 2013

Tomorrow is July 2

Tomorrow is the 2nd. That means it is anniversary time. Two years and two months since diagnosis.  26 months since May 2, 2011.

Feeling great.  My latest labs were good. White blood cell count is normal. Hemoglobin low, which is surprising. Usually I can tell when it is particularly low. Not this time.  So I do need procrit this week.  Creatinin is 3.64. A nice number. But I still want it lower. I have added some things back into my diet and it is nice to see that the kidneys are handling it.   Wednesday is chemo so I'll be celebrating the 4th on a steroid high.

I didn't ride to work today, my streak of 4 days in a row has been broken. I was just too damn tired this morning. I let myself go yesterday and had a couple of stiff drinks. I felt like having a vent and blowing off steam, so I went to a friends and got a little buzzed. Perhaps a lot buzzed. Thus this morning, tired and headache. That was my first hard alcohol in well over two years. I have had a beer now and again. But I dove in to the deep end of drinks with those couple I had. Today, I was pissed at myself. I talk about my need to be diligent and focused.  But I got away from that yesterday. Obviously I lost focus. But I'm also mad that I have to even think about it. I can't even have a cocktail without worrying about what it means to my cancer. Damn myeloma, you have so messed things up.

Speaking of deep ends, on Saturday we did go to a friend of Leslie's for a bbq. The house has a pool, a salt water pool, and it was so nice. The water and me have become best friends forever since my diagnosis. I just looks and feels so freeing and so spectacular.

Tomorrow I do ride to work. Focus.