Saturday, August 30, 2014

Coming up on 40 months

September 2 is just around the corner.  Put aside how fast time is going by, and it's key to note that we're coming up on 40 months since diagnosis. Still going strong. Yesterday was chemo. Treanda aka bendamustine. Two more days next week and then we test.  Basic lab work this morning. As we know, I can't use my left arm for blood draws or even blood pressure, given my fistula which we've never used.  We just put my port back in a couple of months ago. But my right arm is tuckered out. My best vein in the right arm is no longer a source for blood draws.  Scar tissue has made it hard and useless. So now we search for some other vein that works. I'm now one of these people that gives the lab tech problems.  I'm trying to lose some weight and increase my lifting, hopefully this might make some alternate veins usable and visible.  As I said recently, if this is the sort of thing I worry about while walking around with an incurable cancer, then that's ok.  I'm good.

My dex is in full impact mode. I've been awake since 1:30.  The rage is hitting. We have a neighbor who rides a recumbent bike. He doesn't do anything except go back and forth on our street. He never even goes around the block. But he rides for hours and starts in darkness, with no light on his bike. So this morning, as I am driving to the gym, in the dark and without my glasses (note age and steroids are ruining my vision). There is he is in the middle of the street pedaling away. Lucky for him I didn't hit him. Then after the gym I was taking Gracie for a walk and he rides up behind me, unbeknownst to me, and loudly says "Good morning"  Scared the bejesus out of me.  I'm jumpy on top of grumpy.  "mother fuck" were the exact words out of my mouth. Then after walking Gracie I was watering our front lawn. It looks like hell. And he keeps riding by, occasionally waving. WTF?" Leave me alone." This I said a bit under my breath. At this point, I determined that I need to lay low and stay inside today. Avoid people at all costs.  Luckily UCLA football is on ESPN this morning. 

Side note.typically UCLA football is on the Pac 12 network. And the conference and DirecTV can't get their shit together, so I rarely get to see UCLA football or basketball for that matter. Bullshit. Even sports bars often don't have the Pac 12 network. It's absurd. Anther side not: If it was 10 or 12 years ago, right now I'd be with my buddy David at a sports bar, on my way to being drunk and loud. Ah, the good old days. Loudmouth soup as David calls it.

Fortunately UCLA is on ESPN today and I'm watching the game. The offense looks like crap, but the defense is dominating. 3 defensive touchdowns. 

Next week, Vikings football start for real. 

And that's my myeloma report. Not much going on.

Wednesday, August 27, 2014

Karen Crowley

Karen was diagnosed in 2005 at the age of 30. That's so young for myeloma. She was also a new mom.  She writes for the Myeloma Beacon and recently posted a great story about the power, positivity and support gained from fellow myeloma and cancer patients.

Below is a link to the Beacon and her story:
http://www.myelomabeacon.com/headline/2014/08/26/myeloma-mom-the-kindness-of-strangers/comment-page-1/#comment-56702

Myeloma Mom: The Kindness Of Strangers


5 Comments By
Published: Aug 26, 2014 5:12 pm

When I was first diagnosed with myeloma in 2005, I was a 30-year-old new mom, and I felt very alone.
It wasn’t that I didn’t have friends around me. I did – and they were all supportive and helpful. Most of them were also 30-year-old new moms, so I never felt alone motherhood-wise.
Cancer-wise, however, nobody else I knew was going through what I was going through. All of my friends were busy having more babies and look­ing toward the future. I was stuck in a world of doctors, needles, x-rays, and uncertainty.
Sure, because I have never looked sick or even felt sick – other than the year I suffered side effects from weekly dexamethasone (Decadron) – it’s been easy for me to sort of blend in with the general population. And, of course, I have plenty of important things in my life to focus on other than the cancer: My daughter, my husband, running, writing, waiting for the New Kids on the Block to go on tour again.
That last one is important. Don’t judge me.
Still, myeloma is always there. Nobody else I know has to go hang out with the oncologist every four weeks. Nobody else had to turn down play dates for their kid with the excuse, “Sorry, this is the day we have to stay home and wait for the UPS guy to deliver the Revlimid (lenalidomide).”
Nobody else has this myeloma shadow hanging over them, always wondering what will happen when the current treatment stops working and things get worse.
And so, fairly soon after my diagnosis, I turned to the Internet, searching for blogs, for online support groups, for other people who knew what I was going through.
It was difficult to find people my own age with myeloma, especially in the early days. Still, as I sat in the glow of my laptop day after day, I was able to find many online friends who understood. I’m not sure what I would have done without them.
I remember one woman in particular. She was not a myeloma patient; she had leukemia, but she was close to my age and had a young daughter, and she had been diagnosed about a month before I had. As my own baby napped, I would read entry after entry of her blog, which detailed her grueling chemotherapy regimen and stem cell transplant.
She was so strong, so optimistic, so determined to fight her disease – and so funny, too – that I started to feel better, stronger, and less alone. If she could battle her illness this way, I could surely handle mine.
I never met her, and never really communicated with her. Her blog had such a large following that the few comments I left didn’t stand out. Still, I kept reading.
Sadly, she passed away a few years after her diagnosis. Her family removed her blog from the Internet, but I will always remember it. Always. Her blog helped me more than anything in those first few months after my diagnosis, and I will forever be grateful.
Since then, I have met many more patients online. Most are myeloma patients, but others have different types of cancer. Some have passed away since we first made contact; others are thriving and going strong. Most I have never met in “real life,” but I consider them friends. They completely understand what I’m going through, and I understand them.
If I could go back in time and wave a magic wand to erase my myeloma diagnosis, I would do it in a heart­beat. At the same time, I think I would miss my online myeloma friends. Myeloma seems to attack some of the smartest, funniest, most interesting people around. I wish I could have met all of these people for a different reason.
But there is no magic wand, and myeloma is what unites my group of strangers. We’ll carry on, perhaps hundreds of miles away from each other, perhaps without ever meeting in person, but still together, and stronger because we know each other.

Cindy Chmielewski

Cindy is a myeloma and advocate.  She's made it her mission to educate and advocate. I haven't met it here face to face, but I have gotten to know her on social media and through Cure Talk discussions.  Much of what I know and understand about myeloma has come from Cindy, she is definitely one of myeloma mentors.

Cindy is a recent recipient of the Mayo Clinic Center for Social Media Patient-Caregiver Scholarship. The Mayo Clinic Center provides training and resources to help accelerate effective adoption of social media in health care. The link is http://network.socialmedia.mayoclinic.org/discussion/announcing-2014-patient-caregiver-scholarship-recipients

Congratulations Cindy. Well deserved!

Sunday, August 24, 2014

Keep Chopping Wood

Jack Del Rio is defensive coordinator for the Denver Broncos. He played linebacker for a few years with the Minnesota Vikings.  He was also head coach of the Jacksonville Jaguars back in the early 2000s.  In 2003, he was coaching the Jaguars and came up with the team motto "keep chopping wood"  It meant to keep fighting, keep whittling away at the obstacles in front of you.  He even kept a wood stump and ax in the locker room, and players would take a swing at the stump.  This practice ended when his punter seriously wounded himself, missing the wood and hitting his own leg.

Keep chopping wood were the words in my head after my latest Berenson visit. All is good. I'm feeling great. Numbers look good. Recall, I switched labs this month because the previous lab kept messing up my stuff.  Well, the new lab ran all the tests, but didn't show the results in a way that made a whole lot of sense. Even Dr. B had problems figuring it out. We were able to glean that I'm good.  Dr B gave me the option of going back to maintenance.  But he recommended I do another cycle of treanda. I handle it well and it's still working. And that's the trick with myeloma, get every last bit of benefit of a treatment. My kidneys are much better, but still require mindfulness. So Dr B, wants to beat that myeloma down more so my kidneys can continue to not feel the wrath of the myeloma protein.  Makes sense to me. So the next two weeks, we do another cycle. Tuesday, Friday, Tuesday, Friday.  In other words we Keep Chopping Wood.

A new little twist at Dr B's is that he tested my iron. I'm super low, which might explain why I've been tired and why my blood counts are staying relatively low.  Supplements, he said, wouldn't do the trick. I get Procrit shots that bring me blood count up. But iron remains low. So we did this infusion of an iron boosting goop. Ferahim or something like that.  Never heard of it. It was a giant syringe with a thick, dark liquid substance. It is infused, so thank goodness I have a port for that.  I got one last Friday and I go back this coming Friday for a second one. He said this ought to do the trick.  Keep Chopping Wood.

For all my LA people, there's a fundraiser on Friday Sept 5 at a bar called the Surly Goat in West Hollywood in partnership with Reunion Ale and Schmaltz Brewing, to raise funds for the Institute of Myeloma and Bone Cancer Research, Berenson's non profit.  I'll provide more information as I get it.  They just did one in Colorado and will do a few more in other cities. Beer and raising funds for myeloma research. Two thumbs up to that.  I plan to be there.  Note I'll be jacked on dex, given it's a treatment day. Keep Chopping Wood.

Wednesday, August 20, 2014

The Taboo Topic

I'm not sure taboo is the right word. But what the heck, I'm using it anyways.  The topic is death.  I read a column on the Myeloma Beacon this morning from a fellow patient, April, and it really got me thinking. Generally the columns on the Beacon try to be uplifting and I've always found them motivating and inspiring.  One comment on April's column mentions that the Beacon columnists can be too positive and perhaps should discuss death and the reality of myeloma a bit more.  I disagree. 

I imagine all myeloma (cancer) patients in the back of their mind wonder how much time is left.  I know I do. But I also know it doesn't help me to dwell on it.  I'm fighting, I like living, and I'm going to go as long as possible.  When I was first diagnosed, I wanted to hear not a single negative story or anecdote. I went to a support group and it pissed the heck out of me.  All folks did was sit around and bitch.  Thanks for the lack of support, Debbie Downers. 

In the past month, two columnists from the Beacon have passed away.  In the past year or so, I've had people I know personally or through social media pass away from myeloma.  It's sad, sobering, shitty, scary and any other word that starts with 's'.  I'm approaching 40 months. I'm waiting for my latest lab results.  I hate waiting (for anything). I do my labs monthly. Lately I'm thinking I should do them every two months. What's the point of doing them monthly? Collecting my pee, going to the lab, blah, blah, blah.  All a pain.  I suppose viewing these things as a annoyance is a good thing. Viewing the myeloma as an annoyance is a good thing. It means I'm doing good and am able to view the myeloma as an inconvenience.  But in the back of my head, I wonder and think, this thing can come back with a vengeance at any time. Again, I don't obsess over it, but I know it's there.  And because of this, and as I approach my 53rd birthday, I really want to get my ducks in a row between now and my 54th birthday.  I need shit lined up and taken care of. I need my life running smoothly. I need a hobby or two and an accomplishment or two, so if I die and someone has to write a paragraph about me, they have something to say. Right now, my fear is that someone would sit down to write my obituary and they'd be scratching their head wondering  "who was Matt? What did he do?" Sure I have my annually increasing obsession, fascination and love of the Minnesota Vikings and all things Minnesota. I used to run a lot. I used to ride bikes a lot.  I used to go camping.  There are a lot of used to things.

My dad is in his 80s. He's been battling emphysema for some time. He doesn't get out much. He lives in North Carolina.  Last summer they made it up to New York for a wedding, that we also attended.  But that's it for the traveling. He sleeps a lot.  But whenever I talk to him, he's upbeat. He never complains. He's positive. Since the day I was diagnosed, he has been super supportive.

My mom is in her mid 70s. She's amazing. Her energy and passion are that of someone much younger. She traveled to Japan a couple of months ago. A trip to England is in her future. She still works.  It's pretty amazing. People on my mom's side of the family generally live long and healthy lives.

My boss is retiring tomorrow. He's 65. Still young. His wife is my age.  He has been my boss for 23 years. 13 at this job and 10 at a previous job. I guess at my previous job I did a decent job, given he hired me a second time. His rationale for retiring now is that he wants to enjoy life while he still can.  That is an excellent decision.

I kind of figure I might me working for a long time or until I kick it. I need money. I need insurance. My insurance is awesome. I'm lucky and haven't had anything denied in 39 months.  But that sucks.  I could get an infection or get sick at any time. That's the nature of myeloma.  But how crappy would that be?  Dying on the job.  Not enjoying life like I should be. I recently wrote about how I'm tired of obligations.  It's true.  Part of me wants to say fuck it, I'm all about me and nobody else. I think I should max out my credit cards. I should cash in my retirement accounts. I should travel. I should get a hobby. I should try new things. I think these things, because I'm don't want my obituary to say "Matt. He had a job" . Yes, I have Leslie and Gracie and family and friends and so on. But you know what I mean.....cancer forces us to look inward and to look at ourselves with a critical eye. It's a team battle, but also a very personal battle. 

Crazy stuff right?  I'm not obsessing over these thoughts. But they are on my mind lately.  On one hand it's freeing, I feel like I know what I'm going to die from. That makes it easy.  I just don't know when.  Robin Williams suicide hit me in a strange way.  I got really bothered when I'd read comments saying he took the selfish way out. Bullshit.  It was his life. And as with anyone, if they don't want to live, so be it. It's their choice. Suicide isn't a selfish act.  It's a freeing act.  Note....I'm not even close to being suicidal. I like living.  But I will say, when I was in the hospital for days on end, early on in my myeloma journey, I thought about how I could end my life.  Lying in bed 24/7, feeling like hell can make you think those thoughts.  But I haven't had a hospital stay in over two years....knock on wood.  But maybe I need a back up exit strategy.  Well, first I'll focus on getting my ducks in a row and finding a hobby and exploring life. One thing at a time.

The take away is that I have myeloma. I'll probably die from it. I just don't know when. Could be in a month. Could be in 25 years. 

Thursday, August 14, 2014

Today....

Collecting pee (using new lab to avoid having blood or urIne get lost), worked, went to luncheon for this summer's high school interns.  Today was their final day.  My intern (Asia) was awesome and is starting at UCLA in the fall ( go Bruins).  And that's my day.  Tomorrow blood work, procrit shot (to boost blood count) and regular old work.

Sunday, August 10, 2014

There's no I in team, but there is an I in remission

I recently passed 39 months since my diagnosis.  I'm doing pretty darn well. Yes I had a relapse back in March, but we were able to reach into our previous back of tricks and we've been using Treanda (bendamustine) to beat back the myeloma.  In a week I'll do my monthly labs and we'll know what happens going forward. More treanda? Maintenance?  We'll see. 

Friday I saw my cancer coach for the first time in a couple of years.  She was instrumental in Leslie and me developing techniques to manage the disease and to manage the people who care about me.  I've developed a heck of a support network. Fellow patients who provide me with motivation, inspiration and targets to aim for.  Here's what I've learned. We all deal with this shit differently. Just like there is no one size fits all for treating myeloma. There is no one size fits all for how to deal with the mental challenges. 

To be clear, I've never reached complete response or complete remission. I've got an aggressive myeloma that requires real mindfulness.  But I'm also fortunate, I feel good, life is normal.  Lately though, I worry that as the months pass by, it's just a matter of time before the myeloma regains some momentum.  I'm not bothered by this. I've accepted this. And by accepting this, it doesn't mean I'm not going to fight like heck to kick myeloma's ass.  I might have slipped in a double negative that negates my point. But you know what I mean.  But in my acceptance of this, I worry that I'm wasting my time. I go to work. I stress about bills. I stress about not keeping in touch with people. I feel myself getting bogged down in obligations.  I know many people tap into a vast network of family and friends to deal with a cancer diagnosis.  I took a little different path. I wanted to retreat into my own cocoon and dig in for the fight. There are times, where I wish I had that tight bond of support. Family game night. Friends cooking meals.  I miss that. But I also know I'm a bit of loner and it's hard for me to share. It's ironic in a way.  I don't want people to treat me any differently cause I have a cancer.  But there are times that I want some acknowledgment of what I'm dealing with. As time by goes by, I think people forget. They see me living a normal life. Matt must be ok.  I let obligations eat me up. I carry around guilt that leads to bitterness. I think this is why I retreat a bit. Some friends of ours had a cancer scare last year.  He was diagnosed, treated and got to complete remission in a span of 12 months. To celebrate remission, they bought themselves a new car.  Great news. But at the risk of sounding ugly and petty, where is my celebratory moment or purchase?  I'm 39 months and counting and haven't reached a point where I can say "hot damn, I'm cured!!!" 

I suppose that's the frustrating thing. What's my status? What do I want from people? What do I want from myself? I know that I'm increasingly wanting to simplify and downsize my life.  I need to enjoy every day. I need to not feel like there are things I am obligated to do.  Obligation. I'm starting to hate that word. 

Friday, August 8, 2014

another cycle in the rear view mirror

wrapped up cycle number who knows what today. Next week we do our monthly labs and then we determine if it's more heavy duty chemo or if it is back to maintenance.  Saw my cancer coach for the first time in a while today. Also helpful. While I am in machine mode, I also need to simplify and enjoy life. Yard work, stress, blah blah blah...I have no use for you.  balance, balance, balance. I'm a libra, so balance ought to come naturally.

Saturday, August 2, 2014

39

For those into numbers, today marks the 39th month since I was diagnosed with multiple myeloma.  That's pretty darn good.  Note that I've been alive for 634 months. Myeloma has occupied just over 6% of my life.  Not so bad.  Also note that two weeks before I was born, the Minnesota Vikings played their first regular season game, beating the Bears 37-13.  The starting running back that game was Hugh McElhenny, who gained 25 yards rushing and 54 yards receiving, scoring one touchdown.  McElheny's number that season was 39. Bringing us fulll circle.