Thursday, February 28, 2013

A New Cycle

It's Thursday night. Started a new cycle of maintenance chemo today. Leslie informed me it's cycle 9 of maintenance. That's means I've been holding steady and feeling good for nine months. Tomorrow is Friday. March 1. The start of myeloma awareness month. I never knew this existed until about one week ago. I guess when you pay attention, you can learn new stuff. Note to attention.

With my chemo, as I have mentioned before, I get a huge dose of steroids. Steroids that don't build muscle but do fight myeloma, damage bone marrow and give you a puffy face and neck. Risk reward dictates that taking the steroids and beating down myeloma is the preferred choice. I've been hearing the phrase risk reward quite a bit lately at work. Basically it means you analyze an option or options based on potenisl risk versue potential reward. If rewards outweigh risks when making a decision, then choose the option with less risk. For some of our projects at work, the term is used to compare two lousy options. Which offers more rewards if successful? Which offers greater risk if the choice fails? My point is that the reward for taking the steroid outweighs the risk.

This steroid also gives me insomnia and leaves me feeling like I am on crack. As I said before, I warn people to tread lightly around me the day after chemo.

We talked with Dr Phan for a while and that is what makes him such a great and unique doctor. He will spend whatever time is necessary answering questions and just chatting,  Leslie had a bunch of questions about my immune system and what we can do to bring it up through diet. The chemo drugs (and steroid) damage my bone marrow and inhibit its ability to make white bood cells, the key to a good immune system. After talking with Phan for a while, the result of the conversation was to simply keep doing what I am doing with exercise and diet. I'm doing great and when the good is good, don't change anything. And I'm lucky because I'm not feeling any real adverse side effects from the drugs. So no reason to quit.

Also at Phans, I spent most of my treatment talking to a couple of other patients, One was an older man, spoke only a little bit of English. What I got from him was that he had lung cancer. Had. Today was his last treatment. He latest scans showed everything all clear. So today was his final chemo and he'll come back and see Phan in 6 weeks as a followup.

I spoke a lot wth a young woman who a couple of months ago I thought was a young boy.  Remember the story? A couple of months ago, there a was young patient getting his first treatment at Phan's office. His mom left had him alone while she went to pick up meds at the pharmacy. I finished up my chemo and when I left, the youngster was by himself. As I drove home, I started to feel like an ass for leaving him all alone. A couple of days later I called Phans office and told Krystal, my nurse, about what happened and how I felt. She told me the kid's mom returned shortly after I left. And she informed me that he is a she. Oops. I guess the bald head threw me off.

Anyhow, the young woman and I struck up a conversation today.  I told her that  had seen her before and that I felt bad for her being byself. While talking, I began to realize that she was older than I thought. No problem. But then she told me how when she moved here 9 months ago from Pennsylvania, she tried to download the dmv manual and it was a pain in the ass. Dr Phan's new office has wifi, which the other office doesn't, so we were talking about his wifi speed when she mentioned the dmv. The more we talked, the dumber I began to feel. Turns out she graduated from college. Somewhere in Northern California. How the heck could I have thought she was a young boy? What an idiot I am. And it turns out she is very cool. Loves soup and german chocolate cake. Was diagnosed with lymphoma 4 months ago. She had been misdiagnosed as having strep throat. Wow, that doctor was way off.  I told her about Katella Deli, just a half mile away from the office. I told her about the matzo ball soup and the amazing bakery. She was fired up. Her mom asked me some questions about my cancer. They both asked me questions. We all talked with the older man,  It really was the chattiest chemo session I've had. Very pleasant. Her name is Juanita. The man's name is Lam. I didn't get Juanita's mom's name.

I feel the insomnia sneaking up on me. Well, it's not really sneaking up on me. The steroid effect has hit me with a wallop. No sleep for me. I try to counter balance it, which is helping some what, but not terribly much.

Tomorrow is my long awaited ride to work. The first complete round trip on bike in over 22 months, Saturday is the 22nd month anniversary of my diagnosis. It had been a few weeks before then that I had to stop riding to work.  I had been riding to work every single day. But I wasn't able to breath and could hardly pedal. So that put a stop to that. Riding tomorrow is pretty momentous. I am trying to temper my excitement and nervousness. Stay calm, hop on the bike in the morning and it'll feel like it was just yesterday that I rode to work. But, in reality, it was over 22 months ago.

I am creature of habit. When a new Chili's restaurant opened up several years ago near my office, I had to eat lunch there every day for an entire week. 5 days in a row. I had to do it.  I think when I used to run, I ran a lot. If I was going to run, I wanted to run, I like routine and I am sort of all or nothing. That's a bad thing and a good thing. It's bad, because if something doesn't click for me right away, I am doomed to quit without really giving it a chance.  Thus, when I decided I would be a bike commuter, it wasn't a thing where a couple of days a week I'd ride to work. I had to ride every day. Rain or shine, I was riding my bike go work.  This myeloma messed up that routine. In fact the myeloma has forced to me to change many of routine centric, all or nothing ways. I now need to be patient, less anxious, flexible, and work through challenges, No more turning my back on challenges. Anyhow, I ride to work tomorrow and it is a pretty big deal.

Anyone else listen to spotify? I know it has been around for a fair bit, but I just discovered it a few months ago and it's awesome. You don't download songs, but you can listen to just about anything or anyone, for free,. Right now, I have it on an Alabama Shakes radio stations. The perfect music for me at this moment.

Our lesson for today. Pay attention.

Tuesday, February 26, 2013

Tick Tock...Almost Friday!!

Friday, Friday, Friday.  I ride my bike to work Friday.  Almost 22 months to the day from my diagnosis. Super duper very excited.  I have chemo Thursday, so riding Friday will be a piece of cake, given the jolt of energy from my Dex (steroids).

I did lab work this morning in advance of Thursday's chemo. All is good and steady.  Creatinin 4.11. Good for me, but we still want it down around 2.  Hemoglobin is 11.4.  Excellent. No procrit shot needed and almost in the normal range.

March is Myeloma Awareness Month, so I'll be posting a lot more factoids and information about the MM over the next few weeks.

March 20 I'm hosting a Cure Talk Panel, which so far includes another myeloma patient and an attorney from the Cancer Legal Resource Center.  The talk will focus on work and working with cancer. I'm trying to get Don Baylor, batting coach for the Diamondbacks, as the third member of the panel. He, too, is a myeloma survival. From what I hear, he's expressed interest in doing panel, but making it work with his spring training schedule is the challenge. Stay tuned.

Sunday, February 24, 2013

Update to Being Ready

Here's a question. Well, it was a question I asked Dr B not too long ago. Given I feel so good and am doing so well, can I take a drug vacation? A break from all the stuff for just a little while.  His answer was a resounding and emphatic no.  We've got the myeloma under control but it's still there. And that's the thing with myeloma, it sticks around. But it is treatable and manageable. Dr B pointed out that I'm lucky and not too impacted by the chemo. So why risk stopping and letting the myeloma gain momentum. The program stays the same. Some day, we'll totally wipe this out and I'll get that drug vacation.


Happy Sunday. The day before my least favorite day. But that's ok, I think I should be alright tomorrow. Batteries recharged and ready to hit the salt mines. Bring home that bacon.

It's been about a week and a half since my last chemo. It's been nice. No revlimid, no dex, just the usual assortment of things I take at home. But nothing major. Ergo, therefore and thus, I feel super. Great. Super great.

Thursday it's the start of another cycle of maintenance. So that means Ive got 2 weeks of feeling good, but just a little off. But that is followed by 2 weeks of feeling super great. 

Yesterday, Leslie and I met her brother and his wife at downtown Disney, which is a promenade with restaurants and shops adjacent to Disneyland. We were just planning to meet for dinner, but it turned into a full night at California Adventure, a Disney theme park connected to downtown Disney and Disneyland. The real point is that we did it and stayed at the park until it closed at 11. And I was fine. No problems.Everything good.

This morning I rode my bike to the gym and then to Trader Joes and then home. At the gym, I swam for 30 minutes. Just like that...a normal, good Sunday.

And this means, I am ready. This Friday I ride to work. I ride to work from home and from work to home.  A couple of weeks ago, I picked up my bike from the shop near work and rode home. A year ago or probably more, I drove with Matt Arms and our bikes half way to work and the pedaled the rest of the way. After work that day, I rode a third of the way home and then got a ride home the rest of the way.

This Friday, March 1, one day before my 22nd month anniversary, will be the first time I've made the round trip since before my diagnosis. That's a pretty big deal and I am excited. I suppose that's why I'm not dreading another Monday. No case of the Mondays for me tomorrow. I'm too fired up for Friday to get bogged down in these other meaningless days. High five everybody!

Saturday, February 23, 2013

Monthly Berenson Visit

We saw Dr B yesterday. Everything is good. Maintenance continues to do the trick. It was a quick visit, not a lot to talk about. That's a good thing.

Thursday, February 21, 2013

Latest Labs and Stuff

Just had my weekly procrit shot to help the blood count.  As we know, I've been losing weight and getting in tip top shape. Gotta be lean and mean to fight the fight. Anyhow, with less belly fat, the normally painless shot in the stomach today hurt. Hurt like a dickens. Oh well.

My monthly numbers all look good.  Creatinin 4.32. Total protein 1,379. Upep (bad protein) 42%.  That's all some good stuff right there.  Maintenance continues.

Quick note....yes I'm being retrospective and introspective with the blog. But don't you worry, it's all part of my process to power on and through this thing called myeloma. Going forward, I gotta have my head on straight.

Some Real Myeloma Business

Well, today I get a procrit shot. My latest blood count was 9.9.  Just under the 10.0 threshold for not needing a shot. So close.  I'll go at noontime for the shot and while at Phan's office I'll get my monthly labs in preparation for tomorrow's Berenson visit.  The key numbers I'm looking at is creatinin, total protein and the upep, or bad protein.

I've been on maintenance now for 8 months. That's pretty darn good.  And each month, my numbers have been holding steady or even improving.  That's the goal. That's Berenson's goal. What's interesting is that there are so many options for treating this myeloma thing. That's a good thing.  But I think it makes it tough and confusing, with so many options, to know what's the right thing to do.  I hear folks talking about total therapy, stem cell transplants, etcetera and etcetera. Obviously I have a doctor who takes his own path with treatment. But it's working and that is what counts. So the plan is to keep this going, just the way it is.

I've been doing a lot of stairs lately in preparation for March's Big Climb.  Damn I move slow. I'm no spring chicken.  But the good news is I am getting into pretty good shape.  This morning my weight was down to 196.  When we came home from our summer vacation I was up to 212 and I actually had my kidney doctor tell me to lose weight.  From what I've heard, not a lot of patients undergoing chemo are told to lose weight.  Anyhow, I'd like to be at about 185. At that weight I'll be lean and mean and a myeloma fighting machine.

Wednesday, February 20, 2013

Big Boy Pants

I'm a man. In the early stages of my diagnosis, I put on long pants for my visits with Dr Phan. My big boy pants.  For me it was a symbolic gesture that I needed to man up and fight this shit.  My whole life I've not been a fan of long pants. I like shorts. In college, and living in LA, I could go year round without ever having to put on a pair of long pants. I made it 365 days in  row one time with wearing only shorts.  At my job now, I have to wear slacks and a dress shirt. We used to have to wear ties, but a couple of years ago, we went to business casual and ties were out.  Thank god. Ties are like a boa constrictor around my neck, choking the life out of me.  Yesterday I had to wear a tie for an important meeting and it felt so unnatural. It was my first time with a tie on in probably two years.  I can't even button the neck button. It's not that it won't button, it's just that I can't stand the feel of it. constricting. I'm also big time claustrophobic.  If I'm in a confined space, I feel like I can't breath. My heart starts beating like crazy. It's a horrible feeling.

I have never really been in a fight in my life.  In grade school, during a kick ball game (a sport in which I had a modicum of success), a classmate, who was playing third base, kept calling me Fat Matt.  When I finally legged out a triple and was standing on third, I told the kid to stop calling me that or I'd kick his ass.  He stopped.

In my early 20s, I worked for my uncle, driving a truck.  We used to deliver to place in east LA. I was on the trailer, helping put a strap around some steel pipe.  One of the workers said "hurry up, Jew boy". Repeatedly.  Eventually, I took off my work gloves and started to climb off the trailer and told him we were going to step outside and I would kick his ass.  The other folks around stopped anything from happening. Which is probably a good thing. I'm not sure I could kick any one's ass.

I was a party once in Santa Monica and a couple of guys wanted me to step outside " to talk". I'd been minding my own business, but I had a feeling that their intentions weren't so good.  I balked at going outside. They were persistent.  I eventually rounded up my people and left. I think a month later, I heard that a friend of my uncle had been at the same house and had the same experience. He, however, went outside with the two guys and they proceeded to kick his ass. Craziness.

In college, I cut my own hair. It's curly so no big deal.  When I first went to school I was at UC San Diego. A beautiful campus, known for its science curriculum.  Like I said once before, I used to be pretty smart. Not so sure about that now. My best friend from growing up was at nearby San Diego State.  My second week at UCSD, in my dorm room, I cut my own hair. I was a freshman.  Three roommates. One other freshman, two seniors.  The two older roommates laughed incessantly at my jacked up hair cut, so I went to my room and closed the door to stew. While in my room, they tossed a firecracker underneath my bed and scared the crap out of me.  They came into the room and started up with taunts again. I got out of bed and actually punched one guy in the jaw, with all my might. He didn't budge, but he did have a stunned look on his face. I was stunned as well, I'd never thrown a punch before and have never thrown one again, if you don't count inanimate objects.  The other guy said "damn Matt, for that we ought to kick your ass".  "Fuck you both" I responded.  I proceeded to pack up my stuff, left the dorm and went to my friend's apartment over near San Diego State.  I dropped out of UCSD the very next day and enrolled at SDSU the next semester.  A year later, I transferred to UCLA.  SDSU just wasn't challenging for me. UCSD would have been the perfect school for me. That damn haircut.

Anyhow, my first quarter at UCLA, I got a part time job with Chuck Barris of Gong Show fame.  I never even finished that first quarter at UCLA and was actually kicked out school for failing every class.  The job became full time and I had a heck of a good time working for Chuck Barris.

Fast forward to today. I'm a man. I wore big boy pants for my first visits with the oncologist (although I am back to wearing shorts for visits and treatment).  I recently had an eye exam. My vision is getting kind of messed up, thanks to the combination of getting old and the steroids and drugs that I am taking. I have prescription sunglasses and glasses that I wear for night vision, driving, movies, that sort of thing. Lately though, it's hard to even recognize faces down the hall.  Ironically, the eye doctor told me "it might be time to put on your big boy pants and wear glasses all the time"  Huh?  How did he know those words had a symbolic meaning to me? It's curious to me, how many small little coincidences there are.

Man up is a bit of an over used expression of late. But I like it. It seems approrpriate and fitting.

Monday, February 18, 2013

Words from Family

"You may ask yourself, well, how did I get here?"  This a line from the Talking Heads song Once in a Lifetime. I heard a live version of this song the other day. It still works. Many moons ago, my brother and I would take an annual camping trip. When we were young, the trip would be a week long backpack trip into the Sierras.Truly camping and truly roughing it. As we got a little older the week long backpack trip transitioned to a 3 or 4 day trip and then transitioned to a car camping trip. Eventually my brother and his family moved to Colorado and our trips were no more.

I remember driving up Highway 395 on the east side of the Sierras on one of our trips and Once in a Lifetime came on the radio. The song ended and my brother matter of factly asked the question "How did I get here". We were both young at the time, I was particularly young. I laughed when he asked the question. I said "no kidding, how did you get here?" I was referring to him being married with a couple of kids. I was single, kid free and couldn't imagine anyone wanting to be anything but that. I thought I was living the life. Married? Kids? Obligations? Not me.

Yesterday, we went to a talk given by my mom. She was talking about her work at the LA Craft and Folk Art museum. She's a wood worker and artist of some renown. Seriously talented. Her talk was great. I learned a few things that I hadn't known. She has a real natural, conversational method of speaking to groups. It's a great style that makes everyone comfortable. I need to try and emulate that. Anyhow, she was talking about her work over the years. And she mentioned how in her mind, her work has really changed a lot over the past 30 years. But, she said, that when you actually look at the work it's not that different. There is a connection to all her work and her changes were incremental.  I know her work, yet when I thought about it, she does have a distinct style. In my head, I thought about the Tipping Point by Malcolm Gladwell. It's one of my favorite books ever. It's about change or what it takes for something or someone to succeed. And sometimes it just a simple change or addition that sways the balance. It might be just a little thing that effects change. I thought, if you look at something in it's very infancy and then look at it towards the end of the might see a huge difference. But if you look at each successive step in that process...yeah, change was never that monumental.

Also recently my sister sent me a message. Her message asked the question why. Why did I get cancer? In my mind, I dealt with this question early on in the process. I think asking why was part of the grieving process, if you will. I remember sitting in Dr Phan's office early on, crying asking that exact question. Why me? What did I do wrong?  I don't ask that question any more. I think I said in a blog post several months ago, why not me. This can happen to anyone. And frankly, part of my mind has accepted that part of the reason for this is karma. If I were to answer my sister's question, I might say I had it coming. Probably not true. But what if it were true?

This brings me back to How did I get here? I'm doing pretty good. I have a great partner, a happy home and everything is pretty good. Pretty remarkable turnaround from 21 months ago. Today however we saw a nutritionist. My kidneys continue to slowly improve and we're looking to smartly expand my diet without adding additional strain on the kidneys. Generally a kidney diet aka a renal diet aka a horrible name means that I minimize phosphorus and potassium in the diet. No nuts, beans, dairy, soy, bananas and so on. I can start adding some of these things slowly into my diet. I can't go crazy, but I can have some variety. An incremental shift in my diet.

But going to the nutritionist and thinking about the fragility of my kidneys as a result of the pounding they took from the myeloma, was a bit sobering. I'm pretty much on cruise control right now and purposely try not to think about the big over riding cause of all this. My treatment and approach to the myeloma is all muscle memory now. I just do the things I need to. But when I think about it, I wonder how I got from my brother's 67 VW in the Sierras to where I am today. I am a totally different person now. I can barely recognize myself when I think of my younger self. How did I get here? Through small, incremental changes. There's a theme running through my whole life. Its all tied together.

Back to my sister's question. Maybe it shouldn't be why I got cancer. But instead it should be why did I make the choices I did. The thing is, that is unanswerable. We all just make our choices and hope for the best. Or we make choices without a single iota of a thought about the ramifications or fallout from our actions. We just do what we do.

I'm trying not to dwell on my past actions and how I could change them. But I do think I am solidly cautious and conservative and thoughtful about not repeating many mistakes and with somehow rectifying where I think I went wrong.  It's tricky. Even without myeloma, I think getting older and recognizing my mortality, would have me wondering about my place in the world and my reason for being and doing. It's probably a futile process. We might never be where we thought we'd be.  Perhaps I just keep doing what I do.

Sunday, February 17, 2013

Big Climb Training

Matt Arms and I did some stairs this morning up a bluff above the beach. Whew wee. Tough! I did the stairs 15 times, Matt did 20. I think both our legs are jello now. I've got about a month to get ready for the Big Climb. When I did it several years ago, I was already in good shape and it wasn't too tough. This time, however it might be different. Different fitness level now versus 7 years ago.  Must keep training.

Friday, February 15, 2013

Working with Cancer

On March 20, I am hosting a Cure Talk Panel. Typically, the discussion focuses on myeloma treatment and include a doctor who is a myeloma specialist. I've been on a couple of panels. Recently, Dr Berenson was the guest expert. Even though he's my doctor, I heard some things from him that were new to me.

The panel I am doing in March is going to be different. I want the discussion to focus on working with myeloma. That's been a challenge for me; in terms of my energy early on and also with dealing with the bureaucracy. I was not told of any advisory books and never heard from others about how they dealt with the challenges. I think part of it is that myeloma typically strikes older folks, and therefore retirement or going on disability are the career options. I think. I don't know for sure. I know with me early on, I couldn't see how I would ever be a full time productive employee again. But now I am a full time employee, and frankly I think I am a much better and more productive and more conscientious worker than I ever was before. But where the F are my kudos? Don't seem to be coming any time soon. Just yesterday, I talked with Dr Phan with how I am such on outlier with my myeloma.... Demographically, how I reacted to treatment initially and how I manage treatment now. But! But as I get to know fellow myeloma patients, it seems like there are more outliers. Us outliers aren't necessarily outliers any more.

What's interesting is that very few people at work ask me how I am doing. Either they assume I'm in remission or it's just old news to them. And I don't volunteer much information. I'll tell people my situation if they ask, but otherwise my health is on the down low. But I am starting to think that at some level there is a subtle, under the surface bias preventing my long term opportunities for advancement, simply because of my condition. It's hard to describe, but I can feel it. It is almost like management is ok with getting what they can get of me while they can, but I shouldn't think about any promotions.

Balancing having cancer with needing to stay employed and insured has been tricky. And how it all works is not part of your discussions with doctors. It's something that I imagine most cancer patients learn on the fly. I have.

And that's why the March 20 Cure Talk Panel will focus on working with cancer. I want to have a person or two talk about how they balance work with treating their myeloma. I am actually trying to get Don Baylor, one time baseball MVP, manager and now batting coach, to join the panel. He has had myeloma for several years and given his previous success as a manager and now inability to even get a sniff at open opportunities, I wonder if he thinks his myeloma is impacting his chances. Through a mutual contact, I hear he might be interested in doing the panel. I am also am trying to get a representative from a cancer rights legal firm. Cancer is considered a disability under the American Disability Act. I didn't get that at first, but I do now. It's absurd at times how I have to stress and worry and strategize about my role at work. It can be annoying, but on another level it is stressful and not useful in my attempt to stay healthy and keep the myeloma in check.

Don't get me wrong, in many ways my bosses have been helpful and understanding. But in many more ways, I've had to really look out for number one and I've had to fight the man. Education and shared experiences can perhaps help tackle this issue. Time will tell.

Thursday, February 14, 2013

Big Day Today

Big day today. No not Valentine's Day, although I am wondering where all my anonymous gifts are.  And no it's not a big day because I have chemo today.  I do, but whatever to chemo.

Back in 1988, I was given a Univega by Mom as a college graduation present. I took the long route to graduating. 9 years.  Those 9 years are a story all on their own.  I loved and love that bike. It's a steel framed bike, that is basically a tank. I still ride it occasionally, although it's been missing a front brake for 3 years, the chain has been way too loose and other cables are frayed.  Last weekend, I took the Univega to a new bike shop in Long Beach that refurbishes old bike. It's a awesome shop.  My bike is ready. So today I got a ride to work and at noon, I'll get dropped off at the bike shop to ride my bike home.  It's about an 8 mile ride.  I am very excited. My bike is going to look great, I get to ride home and I feel good.  That is why it is a big day today.

Tonight, I'll be all jacked up on my steroids, so someone may be receiving random emails and texts at 3 AM.

Sunday, February 10, 2013

New Drugs

I don't get too heavy into the technical stuff. But the other day, a new drug in the fight against multiple myeloma was approved by the FDA.  Check out this link on the drug. It's the second newly approved drug in the MM fight in the past several months. Lots of progress.

Winding Down the Weekend

Sunday morning. Gracie had a dog friend sleep over last night. Sugarplum, aka Sugar, a small black and white mix of something. Sugar lives just around the block and whenever Gracie walks by her house, she wants to stop and say hi. There are times when Gracie will absolutely not budge until I take her to the back gate to say hi to Sugar. But what's funny is that if they actually get together, they then ignore each other. Last night, when our friends dropped off Sugar, both dogs were excited. But once together in our house, they had nothing to do with each other. Both are now sleeping in bed with us, and it's making it real difficult for me to get out of bed.

Yesterday, I did some stairmaster, in preparation for March's Big Climb. I also was going to clean out a bathroom sink. Should have been a simple exercise, but it turned in to a multi-hour activity, including a trip to Home Depot. I ended up having to replace the whole drain kit. I did it though. I'm not super handy, but changing the drain? Piece of cake. On the way back from Home Depot, or should I say The Home Depot, Leslie and I stopped for lunch at a local Long Beach place called Curley's, Its sign says coldest beer in town. I've wanted to go to Curley's for years, but just never did make it. It has a functioning oil rig in the parking lot, to go with the coldest beer in Long Beach. It's a bit of local icon. And then on the way home from there, we stopped at the top of Signal Hill, a tiny little city surrounded by the city of Long Beach. Again, never been to this one spot before. Amazing panoramic views of the port, the city, the ocean, the mountains. Rain had just cleared the skies, so the views were spectacular. Note to my Mom....when you're here next week we have to take you to this park at the top of the hill. Wow.

The point of all this drivel? It was a pretty darn normal and nice Saturday. The worry caused by the tiredness earlier in the week has passed. The tiredness itself has passed. That's all good. I did have some crazy hand cramps last night which I believe is a remnant from the Revlimid the night before. Usually I get bad calf cramps from the medicine the night I take it. But sometimes I get these hand cramps half a day later. I'm guessing the combo of the Revlimid and the plumbing had my hands in a bit of shock. Hence nasty cramps. Leslie worked it out for me,once again showing that she's one heck of caregiver.

I updated my resume. First time in seven years. It's ready to be emailed out tomorrow as I pursue my next job.  In terms of my actual current job, I'm fricking swamped. I told my boss I need a full time assistant for the next few months. So tomorrow, I have to write my justification for the need. I'm coordinating $170 million in relocating oil drilling and related activity in support of a new bridge being built in the port. $170 million. It's a little frustrating that I need to write a justification for my need for help. Given the scope of the work, and potential for massive negative repercussions if everything isn't done according to plans, you'd think I could get a quick thumbs up to bringing on help. But bureaucracy is bureaucracy and I've got to go through these steps.  Of note, this new bridge, when complete, will have a bike path and scenic overlooks that will provide absolutely one of a kind views of the port. The bike path on the bridge is something I've worked on and helped bring along.

Thursday it's back to chemo. And Friday is 24 hour urine day, in preparation for next week's visit with Berenson. Enjoy your day everyone. First weekend of no football in months. Time to start thinking about March Madness.

Friday, February 8, 2013

Follow Up With Dr Phan

Earlier this week, I was tired. Super tired. Typically 3-4 days after chemo, I am tired. I've come to expect it. But the tiredness this week was much more intense. I even left work early to come home and sleep. That hadn't happened in over a year.

I thought I might be overly low on blood. And naturally, with this tiredness comes a worry about the myeloma. But we did lab work and my counts weren't too bad. And now it's Friday and I feel great. Worked out this morning, getting in shape. The tiredness has passed.

Nonetheless, I wanted to follow up with Dr Phan. I just came home from that follow up, and he reminded me why he such a great doctor and why I am so lucky to have him.  He explains stuff and he explains stuff in a way that non medical people can understand. Berenson is a great doctor, but he's not real chatty. So we rely on Phan to answer our questions.

Phan's take on my tiredness is that the non stop steroids are taking a toll on my body's natural adrenal system and is not at all an indication of anything the cancer is doing.  Typically, the brain sends a signal to the adrenal gland to produce a natural steroid that gives us energy.  But what might be happening to me is that my adrenal gland is in sleep mode. Because of the steroids I take the brain rarely needs to send a signal to my adrenal gland. But when I come off my steroid high, the brain does send a signal, but the gland is snoozing and doesn't respond.  Hence fatigue. 

Steroids are a hugely important aspect of my chemo treatment, so I'm not going to get rid of them.  My routine is such that I get a massive dose during chemo.  In every other non chemo day, I take a different steroid via pill at home. But there's a 48 hour gap between the infusion steroid and the home steroid. Phan's suggestion is to make it a 24 hour gap between the infusion and the home steroids.  My routine was developed by Berenson, so we'll bounce this off of him.

Things are good though.

Thursday, February 7, 2013

Wednesday, February 6, 2013

head getting straight

Just convinced by a co-worker to bring swim gear to work so at lunch I can go to the pool and swim, which is part of my get in shape program. 

Get My Head on Straight aka Broken Record

See the subject of this post.  This is what I need to do. ASAP.  This has been a tough week.  As I've mentioned before, typically day 3 or 4 after chemo, I'm tired. But usually I fight through it and recognize it for what it is. I generally don't get too bothered by the tiredness. This week though, Monday particularly, I was unusually tuckered out. I had chemo last Thursday.  So I thought I might be low on blood and in need of a transfusion.  And more than that, I was worried that my bone marrow finally took a huge dump after 21 months of chemo, steroids and, oh yeah, a blood cancer.   My whole life I've been a early riser and can bounce out of bed with energy.  Not so much anymore, and earlier this week, it really wasn't the case. I was moving slowly.

This is bullshit, was my mind's response to this. I hate the tired feeling. But I also have to remember that I'm 51 now, so slowing down is only natural.

The good news? I asked Dr Phan if I could do some blood work yesterday.  I was pleasantly surprised by the results.  My blood count is low, but not too low and not too different from what it has been over the past many months.  Creatinin, one of the myeloma metrics, is still below 4.  The positive trend continues. So it's all good, physically.  That leaves the mental aspect. My mind is playing tricks on me.

The mind. It's becoming a broken record for me. The myeloma has changed me, I'm a very different person. That's what I tell myself.  But I go to work, just like I used to. I sit in lots of meeting, just like I used to. I come home and watch tv, just like I used to.  I ask myself, how is being a new person manifesting itself in how I live my life. That's a tough one.  In many ways, I am sick of hearing myself.  It's almost a blah, blah, blah effect. Just words running through my brain.  And this gets to me needing to get my head on straight.  What can I do to mix things up? What can I do, instead of waiting, worrying for the myeloma to act up. That is clearly not productive and not healthy. Stress is the enemy of cancer.  Me worrying does not help me heal.  Me moving and being active and having goals to shoot for is healthy and health inducing.

That's why I set a target date for riding my bike to work again. That's why I am thinking about  a multi day bike tour that lets me prove to myself that I'm ok.  It's odd when I think about 21 months ago.  Friends and family all made a point of visiting.  I think we all thought things were pretty dire.  And in many ways, I feel like I've come through this on the other side.  I got through the scary dire part of it.  Now I need to embrace life and embrace pushing myself  and embrace new challenges and facing fears.

At work this week, I've had to abandon my passive aggressive modus operandi and instead be clear to certain folks that they are fucking things up and my direction needs to be followed.   In a way, I'm having to tell folks I'm a man and don't fuck with me.  I've never been someone who preens around with his feathers in full display.  But in many ways I need to now.  I need to grow up. I need to assert.

There's a job that I'd love to have. I'm going to lobby hard for it. I wouldn't even consider leaving what I am doing now for anything else, other than this one job. This one job, for me, would be so fantastic to get.  In fact, I'd dominate the job. I'm made for it.  But there is also a voice in my head, saying if I can get this job, that I'm making a massive statement about living with myeloma and living with cancer.  It's shouldn't be a death sentence.  Mind you, I'm lucky that I have  the most amazing doctors and I've responded so well to treatment.  When I have the tired feeling like I had earlier this week, it's real hard for me to see beyond that and difficult to imagine having energy to send a message to myeloma that I can't be stopped.  But I need to occasionally slap myself and tell myself to snap the F out of it. It's a balancing act, but it can be done.

Tuesday, February 5, 2013


Numbers all good

Today's Feelings from the Gut

Shit, fuck, fuckity fucking fuck, bitch, ass, fucking shit.

Feel better today than yesterday. Had blood work done this morning, I'm thinking I might be a little low.  I'll have the results later today. Or, it could be in my head and I've convinced myself that I'm worn out from this. Stay tuned.

Monday, February 4, 2013


It's Monday. Typically not my favorite day of the week. But it's particularly distasteful now.  I had a good weekend. Saturday, went for a bike ride. I've targeted Feb. 15 as the day I ride to work. That will be a milestone for sure.  I can do it!!!  Yesterday I went to the gym and did the stairmaster for an hour. I'm slow as all heck but at least I keep moving. I've got the Big Climb coming up in March so I really do need to do some training. And fund raising. 

But, and here's the rub,  yesterday and especially today, I feel rather blah.  Chemo was on Thursday and usually about 3 days afterwards I'm a little tuckered out and don't quite feel right.   I think between the chemo hangover and being a little low on blood, I'm down.  I'd say this is the unseen or unspoken impact of the myeloma.  There's a general sense of tiredness and a general sense of mental fatigue.  It's a challenge and a constant battle and the old noggin gets worn down.

We passed 21 months since the diagnosis. Doing very well really. But, sheesh, I'd like to have one day when I don't have to take a gazillion pills or I'd like to have one day, when I don't have to play mental tricks on myself to keep moving forward.

It's a bit of a pity party today, and I've invited myself.

Sunday, February 3, 2013

True Fans

Got a mystery gift the other day. A book called True Fans about 3 friends on bikes making a basketball pilgrimage. Thank you to somebody!!  A perfect book....a good motivator for me.

Saturday, February 2, 2013


It's the 2nd of February. The 2nd. The 21st anniversary of my diagnosis. 21 months. Wowee. I went for a bike ride this morning. Walked Gracie. Gave Gracie a bath. Went to store. And that's been my day so far.

Friday, February 1, 2013


Every month it's the same.  I have to call the maker of Revlimid and do a survey. Just a few questions about how I use it and restrictions. Then Phan's office orders it and I call the pharmacy to schedule delivery and get a briefing from the pharmacist. It doesn't take long, but it happens every month. Kind of funny, in a way. I don't even listen to what they say at this point. Just an occasional grunt to let them know I'm still on the line and listening.  Just had my pharmacist briefing.

And here's an update on the young patient I saw yesterday. First of all, she's a girl.  She's on her second treatment and is a real trooper, I'm told.  I had to call Phan's office regarding Revlimid and I told my nurse I felt bad about leaving yesterday. She said it was the fine, the girl's mother came right back and they left only 20 minutes after I did.  So that's good. But mental note to myself, to be a little less oblivious and a little quicker with my thought process. Good luck with that though. My brain is transitioning to permanent slow down mode.

Queen Mary

Afternoon meeting on Queen Mary to talk bike path. No hard hat needed.


Friday morning, post chemo

You're in my Chair

It's 3 AM as I write this. Earlier today I had my monthly darzalex infusion.  Five hours. The first 4 go by swiftly. I get a large benad...