Saturday, March 30, 2013

Dex

Dex. Dexmathasone. It's a steroid. Not a muscle building steroid. It's fairly common fare for myeloma patients.  It's given with the heavy chemo and the maintenance chemo. We patients joke about it, which masks the annoyance of it.

Some patients take it orally at home. Others get it with their infusion.  I get it once every two weeks as part of my maintenance chemo. I get 40,000 somethings. It's a high dose.

Dex does a couple of things. It controls inflammation and it works with the chemo drugs to make them even more effective.

Thursday was treatment day. I get a 20 minute infusion of some sort of anti-nausea medicine, followed by a 30 minute drip of dex, and capped off with a rapid iv push of velcade (the actual chemo drug).

Thursday night was an insomnia night. I got maybe two hours sleep. Then Friday I am jacked up. Hyper energy, hyper agitated, and curiously very productive at work, although prone to yelling at people. I warn folks ahead of time that it's a steroid day and stay at a safe distance from me. I rode my bike to help burn some of the energy.

Last night, Friday night, I'm tuckered out. The dex is wearing off. I go to bed early but still wake up several times. Not quite over the insomnia.

But now it's Saturday and dex has worn off. I'm tired. Not sleepy tired, but all over, body and mind tired. It's the combination of the post-dex and now feeling the velcade with its side effects.  I'm going to be tired all weekend. I'll nap, I'll move slow, and I'll be a bit pissed off. In my two weeks between treatment, my off cycle period, I feel great. Normal. Energetic. Perfect.  But now for the next two days, my mind is going to be pissed and telling me that this sucks. Hate the damn overwhelming tiredness.   

By Monday, all of this will almost have passed. Normalcy will return.

Friday, March 29, 2013

Discipline

Rode to work today. Day after chemo, minimal sleep. Sprayed painted on the bike path this morning was the word 'discipline'. Wow. What an awesome word. We need discipline to keep moving. Discipline to stay healthy. To stay focused. I thought about the word the rest of the ride. I made a mental note to stop on the way home and snap a photo of Discipline.

Well, I remembered to stop. But the word turned out to be Disciples. Oops

Oops

Regarding the FACT, the proposed asbestos legislation, I may have forgotten to include a link to the Asbestos Cancer Rights Victim Campaign.  If you Google this issue, include this link in what you look at, but do read other information as well.

http://cancervictimsrights.org/legislation/fact-act/the-hard-facts/

Thursday, March 28, 2013

Blog From Another Myeloma Patient

I wanted to post a link to this other blog from a myeloma patient. She describes perfectly the angst and anxiety that comes with lab results and wanting to know what they mean.  Give it a read if you have a minute.

http://jetblackliving.wordpress.com/2013/03/28/minor-scare/

Furthering Asbestos Claims Transparency Act

There is a bill floating around Washington DC, that may impact the rights of asbestos victims under the guise of transparency. I'd suggest you do research on the topic. I hadn't heard of this before, but was asked if I could post a letter from the wife of a U.S. Congressman, who died from mesothelioma, a cancer resulting from asbestos exposure. Her husband was an advocate for working people and the environment. As I said, I hadn't heard of the Act before now and am hesistant to recommend a position for anyone. But as I said, google the Act, read about it, check out who supports the Act and decide for yourself.

Below is the letter written by Susan Vento to the House:

Dear Chairman Bachus and Ranking Member Cohen:

My name is Susan Vento, and I’m writing to express my strong opposition to H.R. 982 called the Furthering Asbestos Claim Transparency Act (FACT Act). My husband was the late Congressman Bruce F. Vento who served for more than 24 years in the House of Representatives representing Minnesota’s Fourth Congressional District. He died from mesothelioma in 2000 within eight months of being diagnosed.

Mesothelioma is an aggressive cancer caused by asbestos exposure. Bruce was exposed through his work as a laborer years before we met or became involved in public life. He told his constituency about his diagnosis in early February 2000 when he announced why he would not run for re-election. On February 14, he had his lung surgically removed and then began an aggressive regimen of chemotherapy and radiation at the Mayo Clinic.

It was not enough. My husband died three days after his 60th birthday in October. With his death, our country lost a dedicated and humble public servant years before his time. I lost so much more.

Bruce dedicated himself as a tireless and effective advocate for the environment, for working people and for the disadvantaged. During his time in Congress, he was well respected by members of all parties. He served as chairman of the Natural Resources Subcommittee on National Parks, Forests and Public Lands and also served on the House Banking Committee.

The FACT Act directly contracts the decades of work my husband invested in helping those who could not help themselves. If this bill passed, it would be a serious step back for the important work he achieved as your colleague. As the FACT Act is currently written, it is one-sided, unfair and unnecessary. It touts “transparency” yet will delay and in some cases deny justice to people suffering from debilitating asbestos-related diseases like mesothelioma.

Please sign our petition and say NO to the FACT Act. I thank you for your consideration and hope you will stand with me in support of Bruce’s memory and in opposition of this bill.

Sincerely,

Susan Vento

3.61

New low for creatinin. 3.61. Remember at its worst, it was over 8. We've been hovering around 4 for a couple of months. But now, we've got a drop. So we're gunning for 3! I think that is doable given my protein counts are down (also a good thing). I'll get acupuncture Saturday, which will help. I'm locked in!

Met with Dr Phan today and doing chemo today. We barely discussed the myeloma. Doing good. But not stopping there. I've finally dropped the pounds I wanted lose. I got the lean, now I get mean. I'm going to meet my long time friend Ramon (college, best man in his wedding, my dentist and he's a fitness expert) at the gym this weekend to figure out a program for me. Between being 51 and the cancer, my arms are getting floppy. That's not acceptable.

Wednesday, March 27, 2013

The Big Climb. Life Changing

Arrived back home Monday from Seattle. Feeling energized, happy and strong.  Back to work yesterday. Lab work this morning. Chemo Thursday.  Operating on steroids Friday. Friday would be a good day to ride my bike to work.  And that is my week. Welcome to myeloma maintenance. I'll take it.

The Big Climb was amazing. The entire event from the moment we arrived in the building lobby was moving, touching, emotional, happy, exciting and life changing. Seriously.  I left feeling more at peace, more calm, more happy and more satisfied than I've been in ages. And I'm talking about even before my diagnosis. 

Team Goldman raised $2,746. This is way more than we/I ever expected.  People's generosity and support is truly uplifting.  The weather was perfect. A little cool, but sunny and not a drop of rain.  We got to spend some good quality time with my niece Destiny, her fiancee Justin and my nephew Zach.  All really great kids. Although, they're grown up now, so instead I'll say they are all great  people. Color me a proud uncle.  Those three live in Portland and were part of Team Goldman.  We also had Leslie and Matt Arms. Matt Arms and I had been doing some stair training for the past few weeks.
Instead of writing a long rambling, incongruous post, I am going to try a timeline (minus times) of what we did and what we experienced. Oh, I'm sure it will still be rambling and I'll go off on tangents, but at least this post will have some sembelance of order to it. So let's get on with it:

Saturday, before the crack of dawn: Wake up and pack. We meant to pack Friday night, but we took Gracie to Matt and Rich's house Friday night (Note that Matt was already in Seattle, so really just Rich watched the pup) and by the time we got home, we were tuckered out. So Saturday morning pack. It was a short trip, so there wasn't much to take.

We took off from Long Beach Airport on Jet Blue.  I think this is the first time I've flown Jet Blue to anywhere besides Las Vegas.  Well, now that I think about it, I have flown them to Oakland.  The Vegas flight is so fast and easy. And so exciting getting off the plane in Vegas. Gives me goose bumps just thinking about it. I better make it back there in the fall. Seattle is about a 2 hour 15 minute flight. They have direct tv in every seat, so both Leslie and I watched some funny dog videos on Animal Planet.

Saturday, day time:  Matt Arms met us at the airport and we drove into the city from Sea-Tac Airport.  We at lunch at a place in Pioneer Square.  Destiny and Justin drove up from Portland and met us there. We ate, had a beer (I know, it surpresses bone marrow & blood production). Matt took us on a driving tour of West Seattle which has amazing views of the entire city. It was clear and beautiful.

From there we went to Safeco Field, home of the Seattle Mariners, for a stadium tour. I love stadiums!  The Mariners until last season had a player named Ichiro Suziki. After Greg Luzinski, he's my favorite all time player. He was traded to the Yankees last season and I'm a bit torn if I can or should root for the Yankees with Ichiro on the team.  That's a tough one. The tour was great, got a see a whole lot of stuff and we had this funny, fired up, older woman as our guide.  As I listened to her, I thought about the one minute shout out I'd be giving the next day.  And I made a mental note to self to exude that kind of energy. 

After the tour, we checked in at our hotel and parted ways with Matt. He went to his sister's for her birthday dinner and celebration.  The remaining four of us (Zach didn't arrive until Sunday morning. Straight from watching baseball spring training games in Arizona with his dad) (Coincidentally my brother was in Arizona at the same time for spring training) had dinner at the hotel and called it a night at maybe 8 pm. Tuckered out.  I did have a little scare in the hotel restroom. I washed my hands and decided to take a fade away jump shot with the paper towels into trash can. I heard a little clink when the shot went in, but I didn't think anything of it.  But when I left the restroom, I realized my wedding band was no longer on my finger. Oh shit, that ring better be in the trash can. I called Leslie and asked her to send Justin to the bathroom. I wanted him to watch the door, while I dumped the trash can onto the floor.  I found the ring pretty quickly. But too close a call. I've been losing things lately, but losing the wedding band would be a bad deal.

Sunday morning: Me, Leslie, Destiny and Justin had breakfast at the hotel. I tested out the Go Pro hi definition video camera I bought for the climb.  I got a chest mount and a head strap. At breakfast I tried out the head strap. Recorded the whole breakfast. I'm sure folks in the buffet line appreciated some guy with a camera strapped to his head.

Zach arrived from the airport. Matt Arms came back to the hotel at noon and we all headed over to the building for the climb. Our start time for climbing was 3, but we wanted to get there early and park, check things out and all that.

Sunday afternoon: Immediately walking into the lobby of the building, the energy and excitement was embracing and powerful. We checked in, got our numbers, and got our t shirts. And here is where the emotion hit. We all got Big Climb t shirts.  But I also got a second shirt. A survivor shirt. Holy shit, I'm a survivor. So weird.  I hadn't really thought of myself in that way. But that's me, I'm a survivor. That made me a little teary eyed.  I talked it out and got fired up again.  The whole team did a brief video for the LLS stating why we there. Fun. We had a snack and it was time to go.  I turned on the Go Pro and was ready. 

The event had actually started at 8 that morning. 6,000 people do the climb and countless numbers were there for support and to volunteer/work the event.  Starting times are staggered into groups of about 50 or so people. We started at 3.  I was asked a week ago to give a shout out to my starting group. It was only to last about a minute, but all morning I practiced what I was going to say. I also thought about our tour guide and her energy. I was locked in. I've also mentioned before that I'm not a public speaking fan.  So you wonder why I'd agree to this. Well, I did and surprisingly I wasn't nervous at all.  For the shout out, I stood on a podium, microphone in hand. I told folks that I had done the climb 6 years earlier, just for fun. Then I was diagnosed with a blood cancer and now I'm doing it for a reason. I introduced Team Goldman and thanked everyone for being there.  I ended it all with an exuberant "I am so fricking happy to be here!"  I was seriously fired up. And the funny thing is, I liked it. No nerves, no babbling, no nothing. Afterwards I got a few high five from some strangers.   I'm almost as proud of myself for doing that as I am for doing the climb. Hard to explain but it was liberating.  I do believe I'm over my fear of microphones.  I can shout excitedly to anybody.  That amazingly is thanks to the myeloma in a curious sort of way.

And the climb started.  The five of us stuck together all the way.  We stopped once at the 60th floor for a quick breather, but that was it. I was sweaty and huffing and puffing, but I made it to the top.  No one else on my Team was even breathing hard. Destiny was ready to do it again.  We went up the 73rd floor , took in the view, had some water and made our way back down on the elevator.  They have you stop at the 40th floor and you go through a gauntlet of cheerleaders. So cool.  Then it was back down to lobby and meet up with Leslie. They don't let folks wait for climbers at the top.

Our Time was 22 minutes. I'm surprised. I was expecting at least 30 minutes. When I did the climb 6 years ago, it took 13 minutes.  We saw some guy in the morning who had done it in 7 minutes. What the heck?  That's sprinting up 70 flights of stairs.

From there, it was back to the hotel, clean up and off to dinner along the water at Lake Union.  Great views and great food.  We got so lucky with the weather, and what is so cool about Seattle is that the Space Needle looks over the entire city and almost anywhere you are, you catch a glimpse of it. After dinner, Destiny, Justin and Zach had to drive back 3 hours to Portland. It was Sunday night and all three had to work Monday morning. Matt went back to his sisters and we went to our room and crashed.

Monday morning: Matt picked us up around 8 and it was off the airport. The three of us were on the same flight back. I thought about how back in the day I loved to have a drink at an airport before I got on my flight. It relaxes me for a flight and lets me people watch.  That was the old Matt. I can't really do that now. It's not that I wouldn't like to, it's that I can't . What with the myeloma and kidneys and all that. The new Matt goes to airport gift shops and shops for a gift for his oncologist and his staff.

Monday afternoon:  Landed, drove Matt home, picked up Gracie and went home. That was the weekend.  I filmed the entire climb and some pre/post stuff.  I need to edit it down and add our team's theme song.  Hopefully,  I can do that in the next couple of days.  And as I said, it was a great and life changing weekend.

Thanks again to so many people for the support.  It means a lot and goes a long way.

Cure Talk Panel

Hello all,

Here is a link for the recent Cure Talk panel discussion on Working While Living with Myeloma.  I think the talk went very well and hopefully we provided some useful information to folks. The panel included myeloma survivors discussing the impact of myeloma on their career and an attorney from the Cancer Legal Resource Center.

We'd like to do a follow up panel, perhaps in June.

http://trialx.com/curetalk/2013/03/listen-to-the-march-cure-panel-talk-show-broadcast-on-working-while-living-with-myeloma-here/

Matt

Tuesday, March 26, 2013

The Big Climb Building

Here's a photo of the 70 story building that Team Goldman and all our donors conquered this past weekend.

Monday, March 25, 2013

The Big Climb

Hey folks, just got home from Seattle. An amazing life changing weekend. The Big Climb is over. I did it. Team Goldman did it. We raised a total of $2,696. Once again, thanks to so many people for their support and generosity. Tomorrow, I'll post a long detailed summary of the event and the weekend. For now, here's a photo of the team (me, Leslie, Zach, Destiny, Justin and Matt Arms) before we did the climb.

Friday, March 22, 2013

T Minus 2 Days Till Big Climb

Just two days away. We fly to Seattle Saturday morning and fly home Monday. Our start time is 3 pm on Sunday. I bought myself a Go Pro hi def video recorder and will record the whole thing. I'm getting more excited by the minute. I've been asked to say a few words to get folks fired up for the climb. I have about a minute, at around 2:58 on Sunday. I think I know what I'll say. It'll be super easy to explain why I am excited to be doing the climb.

We've raised over $2,600. Really fricking awesome. I'm honored, touched, motivated and humbled by the generosity of so many people. It's funny...certain words sound so cliche. Humbled, blessed, motivated. But those words all ring so true with me. It's been an amazing journey over the past couple of years. I've learned a whole lot about myself.

Survive and Advance

I just watched an awesome documentary on ESPN. It's part of their 30 for 30 series. I can't really do it justice. I can say it left me inspired and excited and fired up.  Read this to see how impactful it was on my friend Brad.
http://bradstrong.wordpress.com/2013/03/22/322-survive-and-advance/

Thursday, March 21, 2013

The Transplant Question

There are two lines of thought in terms of myeloma treatment. One is that the goal is to have the patient do an autologous stem cell transplant. It's autologous because you're getting your own stem cells. The other line of thinking is no transplant.  The majority of patients and doctors opt for the transplant, thinking it gives longer survival.  However, the minority of being against transplants, is growing. Dr Berenson, my doctor, is against transplants. I can't disagree, given his approach has worked so well for me.

Regarding the above, here is an article debating this issue. The con in the article is my Dr B.



 http://journals.lww.com/oncology-times/blog/onlinefirst/pages/post.aspx?PostID=693


Oops, I forgot

I'm stupid. Now, now....don't say "oh Matt, you're not stupid".  I'm stupid in the sense of what I forget. I mean, I forget a lot of stuff lately; keys, papers, wallet, lunch, stuff at home, stuff at work, etc.  I chalk it up to chemobrain.  It's real.  But I've come up with a technique lately to help me find what I've misplaced. It's called: stop, retrace, success.  I stop searching, retrace in my head what I was doing when I last saw something and success! I find what I am looking for.

But I'm stupid, because I  also forgot today something much more important. How damn far I've come.  We're approaching 23 months. I can ride my bike to work again. I'm doing the Big Climb this weekend,  7 years after I first did it. When I first did it, it was for kicks. For fun.  I knew that the LLS was involved, but it was just an organization to me. I didn't have ties to it.  Well, lo and behold, now I'm doing the Big Climb, after thinking I'd never do anything like it again. And it has a whole lot of meaning to me. The LLS supports crucial research into all blood cancers. Hey, guess what I have... blood cancer. But hey guess what... I'm doing great. On Sunday me and others are climbing 70 stories of stairs. I guess that is a pretty big deal. Team Goldman has raised nearly $3,000. I've never raised anything close to that amount for anything. Ever.   I'm touched and honored that so many people are chipping in. And it hit me today, what this means. It means I'm still here, I'm still thriving. That's pretty fucking good.

I gotta give myself little pep talks every so often. That's another common thread among other patients, which is teaching yourself to think differently. Think differently about your life and your role and your every day.  I'm now imagining that Sunday when I start the climb, it will really hit me. Will I cry? Perhaps.  23 months later, I'm doing something I once did before. Actually it's something someone else named Matt Goldman did once before. It doesn't feel like that was me 7 years ago.

Communication

I've come to the conclusion that I'm a horrible communicator.  I hate public speaking, although I'm getting better at it. I hate the sound of my own voice.   I mentioned in a post many months ago, that I used to not even want to give a toast or say something at a big family gathering. Wedding toasts....stress inducing. 

Over the past couple of years I've gotten better at it.  I have to lead a lot of meetings at work and give an assortment of presentations.  That alone has forced me to get more comfortable with the whole process.  For me, what's tough is having the self confidence that the words coming out of my mouth are clear and coherent.  I can be prone to babbling, when I'm not locked in on what I need to say.  But when I get locked in, I feel the pressure, and babbling might ensue.

Yesterday I hosted a Cure Talk panel, with the subject being Working While Living with Myeloma.  It's a vital issue for us cancer patients and one that isn't often discussed. No one explained to me how I balance my health, my disease and my need & desire to work. It's tricky. So we had a panel conference call yesterday.  I think it went pretty well. We had great people on the panel and got a lot of good information out. I hope folks found it useful.  I'd love to do a follow up in June perhaps.  I really want to listen to the broadcast.  But I fear what I will sound like.  The thought of hearing my voice and stammering, is almost mortifying.   But I need to force myself to listen it.  The myeloma has made me a bit better with the whole speaking thing. It's a mind game I play with myself. If I can survive the myeloma and all that came with the early treatment, I tell myself I can do anything.  What's a little conversation when compared to lying in a hospital with tubes all over my body?  This is the game I play with myself. I try to put everything in perspective.

They say the way to overcome fears is to face them head on. Just dive in. I'm going to force myself to listen. ugh. The nerves in my belly start acting up just with writing those words.

I'm also not a great communicator on the personal level. I don't always say how I feel and can skirt around issues. Conflict, questions, and all that, are horrible results for me. I can get defensive.  Again, over the past couple of years, I have learned how to be more direct.  But I still have steps to take. I"m getting there. 

This morning I took a bunch of students on a field visit of some construction here at the port.  It went well. I knew what I was talking about, in fact I knew the subject better than I know most other things.  So no problems.

This morning I got my monthly lab results.   My protein counts and bad protein counts are as good as they've been in two years.  The myeloma creates a bad protein that blasts the bone and/or kidneys.  For me, my kidneys have taken a beating.   These low protein numbers are excellent. It means we're still kicking the myeloma's ass. And it means my kidneys have a chance to improve even more. They're not being traumatized.  Mentally, I'm hanging in there. I have energy to work out and live a fairly normal life. But wow, at night, I can be pooped out.  I'll pass out often on the couch snoring away at 8 pm. That part  sucks. Pisses me off.  It's about finding balance between wanting & being able to do things while also needing to rest and remember that cancer is still floating around my body.

One other note about yesterday's panel discussion. It's interesting hearing other people's myeloma stories. Seems like we all grapple with many of the same issues and questions and worry.  There is a real common thread.  I've developed a pretty good support network of fellow patients.  Seeing how others positively deal with their disease is motivating, empowering, and humbling.  Who would have thought this is the path I'd take? Not me. But here I am, and we'll make the best of it. And I'll learn to communicate better.

Wednesday, March 20, 2013

Under Armour

I'm still waiting to hear from Under Armour. If they don't contact me soon, I might have to branch out and find me a different sponsor.

WOW

Just a few days until the Big Climb in Seattle. I am very excited. Team Goldman has raised over $2,400.  I'm so impressed and touched by every one's generosity. It's pretty overwhelming. After work today Matt Arms and I are doing our last stair training.  I'm confident that he'll be fine. Me on the other hand, I'm gonna be tuckered out. When we train, we do a set of stairs on a bluff above the beach. I do about 20 sets and Matt usually does about 4 or 5 more than me.   I bought a Go Pro hi def video camera to memorialize the entire climb.  I'll share with everyone next week.  (Note I also plan to strap it to Gracie's back on occasion and film her walks from her dog's eye perspective.)

It's Wednesday and I'm doing good.  I have the Cure Talk Panel talk later this afternoon, and a little nervous about it. It'll be fine, and I'm hoping we can provide some good information to folks.

I've ridden my bike to work 4 out of the past 9 days. That's awesome. Yesterday I rode, and it was the first time, I actually felt some power and could work a little harder on the ride home. It felt fantastic. I'm so dang happy about that. At one point in this myeloma journey, I thought I'd never ride to work again. But I'm doing it.

Today should have been Berenson. But I delayed seeing him for a month. And I'm not even to nervous or paranoid about that. That's huge!  I'm a real creature of habit and routine. And my routine has been to see him every month. But I know my labs look good and I know I feel good, so let's not see him this month.

Thanks to everyone for the support, generosity and kind words.  Really, really, really appreciated.

Monday, March 18, 2013

Yo, Yo, Yo

It's Monday. Last night, Leslie and I went to a dinner hosted by a local group.  The dinner was to acknowledge the work of several groups/non-profits in Long Beach who had participated in a week long effort to provide assistance to individuals who could use some help.  Teams consisting of two people were tasked with giving $1,400 over 1 week, with no give being larger than $250 and no give being a direct cash gift.  Really a neat idea.  It produces a chain of giving and appreciation.  Leslie has spent a fair amount of time helping a local profit known as the Catalyst Network of Communities. The Catalyst team included Leslie in the chain of giving and she passed it on. Good work Leslie! She's invested a lot of time and energy into a great organization.

For me, it's a big week. Wednesday, I'm hosting a Cure Talk Panel discussion, with the focus being on Working While Living With Myeloma.  Space is limited, but if it's filled up, they post the podcast afterwards for listening. The link is http://trialx.com/curetalk/2013/03/hurry-register-for-our-march-myeloma-cure-panel-discussing-working-while-living-with-myeloma/

And this coming weekend is the Big Climb in Seattle. It's fund raiser in support of the Leukemia and Lymphoma Society, which provides dollars to researching all blood cancers, in myeloma.  My team has raised over $1,500 so far. $1,500 was our goal, but let's see if we can raise more than that.  The link for Team Goldman is http://www.llswa.org/site/TR/Events/BigClimb?px=1559651&pg=personal&fr_id=1250

I've got some of my monthly lab results and everything is looking good. Creatinin 3.86, total protein is down, hemoglobin over 10.

Sunday, March 17, 2013

Day 3 after Maintenance Chemo

Stairs in morning (big climb just a week away), followed by moodiness, tiredness, grumpiness, laziness. I forget about these "nesses" during my two weeks off. But then I am reminded. It's part of the routine. It's part of the new normal. Don't like it.

Saw a whole bunch of yougsters dressed in green this morning getting early start on dinking. I remember those days. Seems so long ago.

Saturday, March 16, 2013

Under Amour

I've identified Under Amour as who I want to sponsor my cancer recovery, and I think through this, it will raise awareness for Multiple Myeloma and all blood cancers. Stayed tuned Under Amour, you'll be hearing from me.

A Month of Firsts

This week I rode to work two out five days. A first. Yesterday, the day after maintenance chemo, I rode. It's a 10 mile trip each way...20 round trip. I parked the univega and instead rode my Giant Seek. And wow, what a difference. The ride was easier, faster and even more pleasurable. The bike makes a huge difference. I now want an even faster, lighter, road/city bike. Thinking Specialized Tri Cross right now. I did lose my sunglasses on the way in. They were my back up sunglasses, but disappointing nonetheless. Leslie actually found them just down the street from our house, but they were crushed by a car. Sad.

I had a bit of quandary Thursday night. How was I going to ride to work, when I had to bring my 24 hour pee container with me? I needed to collect yesterday, to ensure we had results in time for next week's monthly Berenson visit. The solution? I've opted to not see Berenson this month. He had indicated we can probably go to seeing him every two months. I didn't want to do it, seeing him monthly gives me a level of comfort.  But I know what to look for in the lab results, so by the time we see him, I can predict what he'll say. So we're passing on our visit this month. Another first. I'll still collect my pee tomorrow and turn it in on Monday. I'll get results towards the end of next week and I'll know how I am doing. I'm guessing, things will continue to look good. If something looks off, then I can make appointment with Dr B.  But as things stand now, I won't see him until April 19. I'm also scheduled to see the kidney doctor on April 19. So we're really on cruise control right now. It's nice.

Today, I'm coming down off my dex high. I can feel the post chemo tiredness creeping up. The tiredness should last till Monday.

Next week is the Big Climb for the Leukemia and Lymphoma Society. Team Goldman set a goal of raising $1,500. We're almost there. We're at $1,300 with one week to go. If you want to contribute, just know that everything counts and matters and here's the link: http://www.llswa.org/site/TR/Events/BigClimb?pg=team&fr_id=1250&team_id=47504

Today I want to get a Go Pro hi def video camera. I plan to wear it during the big climb. I'll post the video after the event.

Thursday, March 14, 2013

Day 15

I'd like to do a day in the life of "chemo" in pictures. One of these days it'll happen. That's assuming I somehow develop the ability to take decent photos. Such an endeavor would have been more interesting and tugged at emotions if I had done it a year and a half ago; when we were doing the heavier chemo and more stuff was going on. A day in the life of chemo now is rather dull. But I am happy to say I'll take the current non eventful day in the life.

Right now it's about 5 hours since I finished treatment. It was day 15 of cycle 9 of maintenance. 5 hours ago. And the steroid, dexamethasome, is now seriously kicking in. I am fricking irritated. At what? At nothing. Just damn irritated. That's the nature of the steroid. Tomorrow, I'll be wired. Tomorrow I also have to do my 24 pee collection. Tomorrow I work. Tomorrow I'd like to ride my bike to work, but I need to ponder if I can ride, bring my pee, and control my bike. That is gonna be a trick.

I worked half day today. Well, let's rephrase that; I worked in the officc half day. It's slowing down a little bit, but still hectic. Tomorrow is a meeting and a field visit to resolve an issue with an oil well that is precariously too close to a major street.  So I was in the office half day. I left the office at noon, stopped at Pollo Loco (I love chicken), walked Gracie and then went to Dr Phan's office new office for chemo. It's dex, velcade and antinaseau. At home tonight it's my last night, for two weeks, of cramp inducing revlimid.

Back in the old days, my treatment was a few hours long and I could watch an entire movie at the doctor's office. Now my treatment is short. Less than two hours, so I can't even get a full movie in any more. That's kind of too bad. Funny, that I'm wishing for a longer visit to my oncologist...just so I can complete a movie. I've watched the first hour of Dark Knight several times. Whether I ever watch the whole thing is in question. I planned to read today. A Chuck Klosterman book, Eating the Dinosaur. But instead I got caught up doing work work the whole time. Luckily Phan now has wifi for his patients. So I had my ipad and phone and worked the entire time. No other patients were getting infusion when I was there, so at least I didn't bother anybody.

I left Phans office, picked up some Matzo Ball soup for me and Leslie at Katella Deli which is right near Phan's new office. Came home, ate soup, chatted, watched tv, took a nap and now the steroid is working big time. I'm awake. I'll probably get a workout in at 10 or 11.

Gracie is lying next to me on the couch, curled in a ball. Leslie is in another room on the phone. And that's my day. That is my myeloma.

Side note. Last night we had dinner with my Uncle Jan and a couple of old friends who I don't see too often. It was awesome. A whole lot of laughs, which we all needed.  One friend asked about my love for the Philadelphia Phillies when back when. And my love of Greg Luzinski, the Bull. My Phillies love never reached Vikings Obsession level, but it was pretty strong for a decade or two. It's definitely faded and in fact Leslie was surprised to hear this. The 70s and 80s Phillies really were awesome. So much fun to watch and follow.  I'm think I might have to rekindle that Phillies fever. I'd imagine my buddy John DiNunzio would be happy to hear that, although he is more a Philadelphia Flyers fan. I can feel the fandom boiling up in my belly. Being reminded of this past love has brought it back to the forefront. So I'd say stay tuned for Phillies centric posts and thoughts. I can't help it.

Tuesday, March 12, 2013

Riding Again

It's Tuesday and with the time change it's now dark in the morning again. Nonetheless, I am riding to work today. I'm not wasting my energy and normal hemoglobin sitting in my car. Yay!

Monday, March 11, 2013

Trends, Schmends

Dr Phan preaches trends. We're looking at trends when we look at my lab numbers. Ironically, I had the same conversation at work about a project today. Spending trends.

Anyhow, I do weekly or bi-weekly blood work, CMP and CBC.  I look at white blood cell count, hemoglobin (red) and creatinin (kidney function).  My rational side says not to get excited (or bummed) by one lab's results. HOWEVER,  from my lab work on Saturday I have normal white blood cell and hemoglobin count. Normal as in a person without myeloma. That is fricking awesome.  First time in two years I've had a normal blood count. No wonder I felt so good and energetic this weekend. I am operating on a full tank. Trend schmends, I am fired up by these results.  Creatinin is at 3.95. Could still use improvement, but I am hovering out of that failure range.  Again, a measure of having the myeloma under control.

We are all champions!!!

Saturday, March 9, 2013

Beautiful Day

I just got home from a bike ride, so I'm flying somewhat on the euphoria that I got from riding. For me, there's nothing more freeing than having my own legs move me around town. It's a very powerful feeling. Right now I feel like a champion. Some might say I am a mother fucking champion. Maybe nobody else would say that, but I'll say it. It's beautiful out there today. Sunny, dogs heads hanging out of cars, people running, people riding. 

People riding though is the glitch in this story. I'm riding on my refurbished univega. It's steel, heavy and slow as heck. I'm slow as heck now. So lots of people pass me on the bike path. That is not acceptable. I hate hate hate people passing me. So I need to do something about that. I need to do two things. 1) Ride more and get faster. and B) Get a light fast bike. I need a fast bike. I'd say this is yet another a sign of me doing great. On a bike, I guess I'm a bit competitive. Riding is now not enough. I need to pick up the pace.

I also want to say a little word about my previous post. I hope I didn't touch any nerves. I wasn't questioning how people react. An illness might be more difficult for the family and friends than it is for the patient. I totally understand that people aren't sure what to say.  And how we each deal with it is different and unique.  I was struck by the statement "don't google it".  My initial reading about myeloma was frightening.  But now that I think about it, you should google it, but recognise that what you read doesn't always apply. I might be rambling here and making no sense. Anyhow, if I touched a nerve, sorry about that.

It truly is a great day.

Don't Google It

Today I read a story (well, the first four paragraphs) about a scientist who won a Nobel prize three days after he died. However, the Nobel committee's policy is to not award the prize posthumously.  Winners must be alive. So the committee was left with a bit of a quandary  What happened is something that I don't know, given I stopped reading.

I stopped reading at these exact words: "Don't Google it".  This scientist had been diagnosed with pancreatic cancer roughly three years before his death.  Typically, with the diagnosis of  his form of cancer, a patient had maybe 6 months to live. He was able to get in a few good years. But upon his diagnosis, he told his family "Don't Google It". He knew if they went on line they'd be frightened by what they read.

And that's where I stopped reading. I'll pick up the article again. But I stopped because it got me thinking.  When I was diagnosed, I sent an email to some key folks who I work with. I knew that I was going to miss significant time. In my email to folks, I said to not believe what they read on line. When I first heard I had multiple myeloma, I went on line and didn't like what I saw. Basically, it sounded like on average myeloma patients lived six months to a two years. Scary stuff. I know my family and friends read this as well. 

But if you read deeper, you realize that the data in the studies used was a few years old. Myeloma treatment is progressing at a wonderfully rapid rate.  The quote unquote average myeloma patient is older and less able to tolerate the treatment. I'm young and had been in pretty good health. So what I read on line, I determined didn't apply to me. Don't get me wrong, I was scared and there were times I thought death was just around the corner.  When we searching for the right combination of drugs, it was a bit of panic time, and even Berenson said things were dire if we didn't get the right mix of drugs.  But since we found a treatment that worked, things are looking up.

I also read a story (the whole thing) by a fellow myeloma survivor, that discussed the elephant in the room. The elephant being death.  People don't want to talk about it. But it has to be discussed. We, as patients, have to be aware of it.  I'm aware of it. I know that myeloma supposedly never really goes away. It just gets controlled. However, my mindset is that I've got another good 30 years to go. A part of my brain thinks I am going to have a miraculous, spontaneous and utterly complete remission. My maintenance chemo schedule is such that I go two weeks without treatment. During those two weeks, I feel fantastic, almost as good as I felt before all this. Going to chemo is a stark reminder and slap in the face.  But during those off weeks, I'm really trying to live as normal and as active as possible. Living like that, will help achieve that sudden disappearance of my myeloma.

When I met Brad the other day, he talked about his diagnosis and how he told his people "don't google it".  I'm paraphrasing, but you get the point. He had spent a fair amount of time doing his own research and knew that it would scare people.  He also realized that myeloma treatment had progressed significantly. He is also young, like me, and plans on being around for a long time.

March is myeloma awareness month. I've been trying to post a fact a day on my facebook page. We're on day 9. But what's interesting is the nearly complete lack of responses I am getting from people. A few people will like what I write, but almost nobody will actually write a comment. I am finding it really strange. Maybe I'm being too heavy handed with the fact a day. People don't know what to say. Cancer elicits very different responses from people. Generally, people don't know what to say. The author of the story about the elephant in the room discussed that he often gets people saying he doesn't look like he has cancer. That's also common with fellow myeloma patients. I hear that comment. It's a good thing.  But it's an indication of there being an image or perception of what a cancer patient looks like. I think I had the same misperception before my diagnosis.  The thing is, we look like regular people (aside from puffy necks and faces from steroids).  For my first year, people really avoided the cancer topic with me. Now that I apparently look perfectly fine, some, not a lot, of people are bold enough to ask me what's happening with my treatment. But I go back to this odd lack of responses on facebook. I'm not sure I was expecting an outpouring of questions or interest, but I thought I could get some rise out of folks. It's odd. But maybe not so odd.

I'm trying to get in shape for the Big Climb. I've been riding my bike more. I'm going to ride to the lab today. I'm getting in shape. So I suppose I ignore the myeloma, the same way other people do. It's a non issue. Well, it's only a issue if I let myself start thinking about it too much.  If my head isn't on straight, I get bummed.  The other day, a Monday, I had a tough day at work. My brain felt like it finally quit on me. Not a single coherent thought was formed that day. I bounced back and now everything is fine.

Yesterday, I walked Gracie, went to the gym, had acupuncture, and went to a movie with Leslie. That's a regular day. That's a good day.

Thursday, March 7, 2013

Working with Myeloma

Here is the link to register for the March 20 Cure Talk Panel.  Space is limited, but if you can't listen live, the podcast will be posted on the cure talk website.

http://trialx.com/curetalk/panels/myeloma-cure-panel-talk-show-on-march-20-6pm-est-to-discuss-working-while-living-with-myeloma/

Keeping On Keeping On

Recently, I've become friends with a fellow myeloma patient.  He's on the east coast and contacted me through this blog. Obviously I'm on the west coast, but through email and Twitter, we stay in fairly constant contact.  I've mentioned before the power of Twitter and how's it become this amazing support network.   Anyhow, this fellow survivor..let's call him Brad (since Brad is his name)....was in my area this week.  Well, we couldn't let the opportunity pass to meet face to face. Brad was diagnosed pretty recently, in late 2012.  So last night we met and chatted for about an hour. He's got a hell of a great attitude and I left feeling re-energized and re-motivated.  His attitude is awesome.  What's interesting, is that many of his fears and concerns and thoughts are so similar to where I was at the same point in my diagnosis, and even are the same as where I get bogged down in currently.  Our reactions to our diagnosis are quite similar.  I think there's this unspoken kinship and link between us myeloma/cancer patients.  Myeloma is a tricky cancer. Even in remission, it's always lurking in the background. Managing that lurking beast is tricky, and having positive support from others with the same experience is a massive help.

Now...I'm not much of a joiner. I tried a support group last year and it just wasn't for me. It was a bitch session. I don't need that. I can do sufficient bitching all on my own.  Early on in my journey, I wasn't interested in talking with others about their experience with myeloma. I just wanted to be left alone. I wanted to stew in my own bitter juices.  I'm past that now. I see the power in the numbers. Not any number, but significant, meaningful numbers.

On March 20, I am hosting a panel discussion on working with myeloma. I'll post the flyer for the event soon.  But from what I hear, questions are already flowing in for the panel.  Balancing taking care of our health with staying engaged and needing to be employed and insured, is a real trick. I'm hoping the panel can shed some light on that rarely discussed topic. It's a fricking challenge.  

Things continue to be good. I'm on an off week from chemo, so I'm feeling particularly good.  Tomorrow is a day off from work and I'm looking forward to getting to the gym and continuing my get in shape program. I'm done to 194 pounds. Down from my high of 212 this past summer.

An Article Worth Reading

A friend shared this with me and I wanted to share with others. It's a motivating story about managing the crappy hand we're sometimes dealt.
http://www.mindbodygreen.com/0-6824/5-Lessons-from-the-Worst-Year-of-My-Life.html


Wednesday, March 6, 2013

Time Flies

It's no secret that I'm a Minnesota Vikings fan. It's also no secret that my Vikings love became a love of all things Minnesota.  It's a love that has stayed true for decades now. I'm formulating an idea in my head where in October, I take a multi day bike trip along the Mississippi River Trail, from the northern most part of the river in upstate Minnesota to Minneapolis.  And I'd like to time this so I arrive in Minneapolis in time for the groundbreaking of their new stadium.  I'm thinking this would send a message to myeloma that I'm strong and would represent a personal, emotional achievement.  It's an infant idea that still needs to be grow.

When I was young I read a book about Jerry Kramer. He was an all pro guard for the Green Bay Packers. The enemy of the Vikings. He played on the great Packer teams of the 60s and was all pro many years. For some hard to explain reason he's not in the Hall of Fame.  When Jerry Kramer was a kid, he had a wood chopping accident that sent a massive splinter into his leg which had to be surgically removed.  Some 20 years later, while a member of the Packers, a near fatal infection in his abdomen sidelined him for a year.  Surgery to clean up the infection revealed a fairly large splinter of wood in his stomach. A remnant of his childhood injury and something he had no idea was even there.

With that, I think it's time for me to give a summary of my myeloma, my treatment and where I am at today. 

Let's start with the diagnosis. This came on May 2, 2011. I hadn't been feeling well for a couple of months.  Chemo started on May 3. Whirlwind, to say the least.  We tried 3 different regimens of chemo drugs and nothing worked.  My myeloma has impacted my kidneys. To date my bones are good. Because the myeloma was worsening, the resulting bad protein was beating up my kidneys. At one point my creatinin, a kidney measure,  was over 8. That's in the failure category.  My kidney doctor at the time wanted me to start dialysis.  I opted not to. To me it seemed like the kidneys were still working.  22 months later, my creatinin is in the low 4s and high 3s.  Not great, but out of failure range.

Early on in the process, I went to the City of Hope with the idea in mind that I'd do a stem cell transplant.  But the City of Hope wouldn't touch me because of the kidneys.  The giant, overwhelming dose of chemo drugs that come with the transplant would have been the last straw for the kidneys.  It kind of made doing a transplant a risk.  Around the same time, I began seeing a myeloma specialist, Dr Berenson, who was recommended by my primary oncologist, Dr Phan. Dr Phan, I have to say, is amazing. doctor and I'm so lucky to have him as my primary oncologist.  Dr Berenson is fairly well known in the myeloma circles. He is adamantly against stem cell transplants and in my case was doubly adamant that a transplant was a bad idea.  He saw the risks as not worth it.  He views aren't universal and I've actually heard other patients with other doctors refer to him as a quack. He, however, believes that with chemo and maintenance, myeloma can be kept at bay and a person can live almost a normal quality of life. He has a picture of one of his patients on top of Mt Kilimanjaro.

After 3 unsuccessful drug attempts, Dr B came upon a protocol that worked. The key drug was something called treanda. It's used more for leukemia and was starting to be used in Europe for myeloma.  Not a common myeloma drug here in the U.S.  But we gained traction with it.  9 cycles later I had partial remission and we had the myeloma under control.  I'm now 8 months into maintenance.  Maintenance being infusion of velcade, a chemo drug, and dexamethasone, a steroid, once every two weeks, along with revlimid, an oral drug that I take at home. Two weeks on revlimid, two weeks off revlimid. I also take another steroid at home called medrol.

I feel pretty darn good. I recently rode my bike to work for the first time since my diagnosis and which had been the original clue that my health was off. It's a major step toward normalcy.  I'm working full time and feeling good, other than some very minor side effects from the infusion. Side effects that aren't too bad and are fairly predictable.  Because I am doing as well as I am, a stem cell transplant is off the table for now.  I did harvest (gather) my stem cells in December 2011 and they are lying frozen at  Cedars Sinai.  The treanda beats up my bone marrow, so my stem cell making capabilities have been permanently damaged. Nonetheless, with no transplant in our view, it made sense to harvest my stem cells while I had enough to be harvested.

And that brings me to today.  We're coming up on two years. I'm feeling good. Mentally, this can be a challenge, but I'm pretty happy with where I am at.  Time flies. There are times I forget I have myeloma, kind of like Jerry Kramer not knowing he had a splinter in the gut. And that's it, that's my story.

Monday, March 4, 2013

Chemo Brain

Chemo brain is basically a blow to the brain's ability to process and memorize, as a result of chemotherapy. Some say it's not a real thing, others say it is. More studies are showing that it is real. Some say it is only temporary and the brain's functions will return after a cancer patient has been off chemo for a while. I heard it described as having a hangover without the headache. But what about us myeloma patients?  Long term, maintenance chemo is pretty standard.  So do our brains every bounce back?

I thought I was doing pretty well.  At work I've been able to focus and process information and remember stuff.  But of late, and today in particular, I'm feeling like my brain function is slowing down.  In a morning meeting, I really wasn't able to think quickly and respond to new information.  I am finding if I don't write stuff down immediately, it might be gone forever.  I ask people to remind me of things now.

In my non work life, I am finding the memory is taking a real hit. I've always thought I had a pretty good memory and a pretty good head for numbers.  But I forget a lot of shit nowadays. Focusing is getting tough. 

Argh, what other surprises await me?

The Big Climb

March 24 is right around the corner. It's almost Big Climb time.  I think I've mentioned before that I did this event several years ago as one to do item on my 45 by 45 list.  At the time, it was simply a building climb for what seemed like a good organization, the Leukemia and Lymphoma Society (LLS) The LLS provides support and research funding for all blood cancers, including multiple myeloma.  So ironically, this event has a lot more meaning to me now.  Matt Arms and I have been training and doing a whole bunch of stair climbing.  Man, I'm getting to be a slow old geezer.

Nonetheless, if you want to contribute to a great organization. Here's your chance.
http://www.llswa.org/site/TR/Events/BigClimb?px=1559651&pg=personal&fr_id=1250

And as a little background......

What is the Big Climb?The Big Climb is a stairclimb up the Columbia Center - the tallest skyscraper in downtown Seattle.  There are 69 flights of stairs, 1311 steps, and 788 feet of vertical elevation.  Although it will be challenging, it pales in comparison to what blood cancer patients go through.  All proceeds benefit The Leukemia & Lymphoma Society. The video below captures the true spirit of the Big Climb.
Who is The Leukemia & Lymphoma Society?The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The mission of LLS is to cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.
Every day, more than 347 LLS sponsored researchers come closer to the goal of finding a cure for leukemia and related blood cancers. Locally, LLS funds 7 researchers at the Fred Hutchinson Cancer Research Center and University of Washington Medical Center. Your support and commitment to the mission of LLS enables us to continue this important work of saving lives and aids us in our ability to reach patients in our community.



Saturday, March 2, 2013

The Day After My Ride

Today is the 22nd month anniversary of diagnosis.  And it's the day after my round trip, successful bike commute to work. I'm no worse for the wear. Not tired, not sore. So all is good. I think going forward, I'll try to commute by bike 2 days a week.  Another step towards normalcy.

Friday, March 1, 2013

Take that Myeloma!!

It's been almost two years since I rode to work.  The inability to catch my breath on the bike was one of the tell tell signs that I was sick.  Well....fuck you myeloma.  Today I rode to work. Home to work!!  And I plan to ride home this afternoon. It's a massive milestone.  I was able to breath, able to climb a small hill on a bridge and felt great. Slow as all heck, but whatever. I rode in with a co worker who lives near me. I'd say I absolutely slowed her down. But nobody minds.