Tuesday, April 30, 2013

Two days until Two Years

I think I am more excited for this two year anniversary than I am for my birthday. It really does feel like a re-birthday is coming up.  Anyhow, not much to say at the moment, but stay tuned, I'll be emoting soon enough.

Feeling good.

Saturday, April 27, 2013

Rise to the Occasion

Less than a week until my two year diagnosis anniversary. In the words of Joe Biden, this is a big fucking deal.  When I was first diagnosed, I was hoping for two years. For a while there, I figured I might make it to the end of 2011. Well, we're coming up on two years and I am going strong. This past week, I made it to the gym twice, rode my bike to work twice, got chemo, worked a full week. Not bad. Not bad at all. Now I figure I have another 20-30 years to go.

Thursday before chemo, we saw Dr Phan. I was scolded by the doctor and Leslie for being too impatient with my kidneys. I went from having creatinin over 8 last year, with the kidney doctor wanting me to start dialysis ASAP. Well, I didn't do dialysis and my creatinin is now consistently under 4. But I want it under three. But as Phan pointed out, we are trending in the right direction and I need to be patient with the kidneys as the clogs created by the myeloma protein get cleared out. It is almost 100% likely that I have kidney scarring,so they will never be normal, but as long as they work, we're doing good. Lesson learned. Stay patient.

And as the doctor pointed out, it's pretty good that this is our conversation as opposed to conversations where we discussed getting a chemo mix that would work. That was a lifetime ago.   Phan also said how he is always impressed by how much his patients endure and persevere. He said he couldn't do it if put in that position. I disagreed. I think any one can do it if they have to. We rise to the occasion. Two years ago if you told me everything I'd be going through, I would have said no way, I won't be able to do it. Well, I have done it. Many people have done it and will continue to do it. It's not right, but it happens.

My Thursday chemo went off without a hitch. I slept just over two hours Thursday, was wired Friday and now it's Saturday and I have tiredness creeping up. The steroid wears off and the chemo drugs hits me. It's pretty routine. My port removal site has healed nicely. There are a couple of little scars. I realized today I am getting quite an assortment of little scars, from various procedures.

One last note...not myeloma related. The Vikings just had an awesome draft and unveiled their new uniforms. This means that my excitement is now building up for the new season. Too bad it is a few months away. I'll try my best to stay calm.

Friday, April 26, 2013

Dex. Ouch. Myeloma.

I should know better. Today was the start of another cycle of maintenance chemo which means today was velcade and dex. Velcade is the chemo drug. Dex is the steroid. It's not a muscle building steroid. But it is a puffy face, weakened bone marrow, insomnia inducing, and irritation (as in anger) causing steroid. It's also a myeloma treating steroid, so it is worth all those other things. It's been two weeks since my last treatment, so I tend to forget what happens. Well, I don't forget, I pretend to forget. Tonight after treatment, I thought I'd stay up late, get real tired and avoid insomnia. Wrong. I stayed up till 11 (late for me). We watched a couple of episodes of Mad Men. I got tired, went to bed and slept for two hours. And now? It's 1 AM and I am awake. Here is the insomnia. I can't beat it. I can't play games. Damn it. Well tomorrow I ride my bike to work to say fuck off myeloma and to burn off some steroid energy. For every action there is an equal reaction. Or however that goes.

I also had a procrit shot today. That helps my blood count which is always low due to the chemo, steroids, and yes myeloma. If my hemoglobin is under 10, I get the shot. As I have sad before, normal is 13-15. I've been in the 6s many moons ago. If under 8, I likely would get a transfusion. I've had over 20 in the past two years, but nothing in a year.  For several months, I have hovered between 9 and 11. That's good actually. I have energy with those numbers. I do lab work every week and a half to see how the blood count is doing. I've been close to 12 a couple of times. That is awesome.

This week I was 9.9. Just missed the cut off for not getting procrit. Procrit is a shot in the belly. For two years now, I have received a whole lot of different belly shots. ( Not the kind you might see in a bar (so I heard)). For me, the shot in the belly has been no problem. No pain at all. We even had Leslie giving me a daily shot for a while last year. She did it pain free, I haven't given myself a shot yet.  I also know that I've met people who refuse to get a belly shot. Refuse. Pain being their reason. I never understood that, for me they've been super easy. No more. I've had a lot of procedures over the past two years. Cut, poked, prodded, injected. And today's procrit shot was more painful than anything I've had to do over the last two years. Damn, that thing hurt and burned like heck today. I am thinking the shot went too deep and missed the jolly, pain free fat zone in the belly. And because of the steroids, I was pissed afterwards. We went to Katella Deli after treatment, which is right near Phan's new office to get our now traditional post chemo matzo ball soup. I could barely drive or stand at the cashier, given my anger over the painful shot. I know why it the shot was bad and that makes me more mad. I need to ask to have a specific nurse give me shots. The one who does it pain free. Seriously....ouch! The thing hurt like the dickens.

I did stop at the gym on the way home from work today, before chemo. My first gym visit since having the port removed. It was great. I did some upper body work. Weight bearing exercises to build strong bones. It was great being able work out without the need to be careful so as not to irritate the port. Lean and mean is absolutely in my future without the port.

Wednesday, April 24, 2013

Quick Hits

It's a marathon, not a sprint.  Berenson's description of myeloma.  It's an appropriate description and it's a good thing.  But also frustrating, because it just keeps going and going. Last night I had a headache in the middle of night. It could have been anything, but I start thinking that perhaps the myeloma has migrated to the skull. That's doubtful and unlikely, but it's a worry.  So the goal is to counter balance the worry with positive thoughts.  At times, I get real tired of listening to myself. Blah, blah, blah.  I can only imagine what people who read this blog think, with my whining, stories and so forth. Thus, today is a quick hit format of updating.

-Chemo Thursday. It's the start of another round of maintenance. Number 11 according to Leslie.

-Saw Berenson last Friday. He's happy. Keep on same path.

-Saw kidney doctor last Friday. He prescribed a drug called Losartan that is typically used to control high blood pressure. I don't have high blood pressure.  But it also helps prevent kidney scarring. A good thing. It does so basically by opening up blood vessels for smoother flow of blood. (that's my base level understanding). But I might not take it. I don't want to add another drug to my mix.  And in my mind, exercise can open up the blood vessels and accomplish the same thing. I'm no doctor, but it sounds logical to me.

-Lab yesterday. Stable. Creatinin 3.75. Hemoglobin 9.9. White blood cell 3.6.  The creatinin is a bit frustrating. I've made great progress, but seems like we've peaked with the number. It's been hovering around 4 for 3 months now. I need a big drop.

-Rode bike to work Monday. Riding again Friday. And back to gym tomorrow and Saturday. Weights. Bone strengthening.

-Irritated with Google. Trying to renew this domain but it is so dang counter intuitive. Leslie and I spent two hours trying to figure it out last night. To no avail. WTF Google? Simplify this!

Monday, April 22, 2013

Back on the Program

Rode to work today. Taking dressing off port site tonight. Showering. Gym and waits later this week.  Focus. Discipline. No what ifs.

Sunday, April 21, 2013

Baseball and More

The email said, and I quote, "You MUST go see 42. Incredible movie". It was from Brad my myeloma friend in New York.  I planned to see it, but I wasn't sure when. After his email, I decided I should see it ASAP.  I saw it this morning and it was awesome. I knew the story, generally. Jackie Robinson was the first African American to play in the major leagues. But how it all came about and what he faced was new to me.

But what's also interesting is how things fall together in patterns. I've always been a football fan first and foremost. We know about my healthy obsession with the Minnesota Viking.  But growing up I was a bit of a baseball fan. I never played a second of little league, although my best friend growing up, Chris, played through high school and even a couple of years at San Diego State. (see related post about my San Diego college career). Lately, though, I'm being pointed towards baseball and I am becoming a fan again.

Chris was an Astos fan. He loved Joe Niekro (knuckle ball throwing younger brother of Phil). I was a Phillies fan. Greg Luzinski was my favorite.  Chris and I went Dodger games once in a while. We even went to a World Series game in 1976, Dodgers vs Yankees. We sat jut above the visitor's dugout. Chris's step mom was the executive secretary to Chuck Barris of Gong Show fame. With her in that position, Chris and I got a lot of perks. Rose Bowl games, Dodger games, Palm Springs weekends. Not so bad.  When I left UCLA the first time (see related post about my San Diego State college career), I got a job for Chuck Barris as a gopher for his production company, followed by a promotion to being his personal gopher. Did I mentioned the ooga horn story or drug dealing auto mechanic?

Anyhow, Chris and I went to several Dodgers vs Phillies game. We'd sit above the Phillies dugout and yell for first baseman Dick Allen to toss us a ball. He never did. Usually Chris and I rode the RTD bus to games, until we got our driver's licenses. Fairly long bus ride from West LA (well Beverly Hills if you want to be exact) (South of the tracks to be even more exact). I knew those Phillies teams by heart.Tonight I tried to remember the lineup from those hey days, and 30 years later, I think I got it.  Bob Boone behind the plate. Dick Allen, Dave Cash, Larry Bowa and Mike Schmidt in the infield. Luzinski, Gary Maddox, and Bake McBride in the outfield. Quirky lefty Steve Carlton was the number one starter and Tug McGraw came out of the bullpen.  They won the World Series in 1980 with a slightly different lineup

In school, during classes, I'd keep track of the Phillies won/loss record and scores. The old fashioned way. Newspaper, pen and paper. The morning paper didn't always have the late night scores, so sometimes I'd be a day behind.  Chris's Dad, Nick, got the afternoon paper however, the Herald Examiner, so often I'd go to Chris's house after school to get caught up on scores.  If you are ever on the 300 block of South Bedford Drive in Beverly Hills, my name should still be scratched out in the sidewalk. I spent a lot of time there during my senior year of high school. In fact, on prom night, Chris borrowed my piece of crap yellow Vega, while I stayed with Nick watching tv and slowly sipping some kind of drink.  Nick was so cool. He'd take us to the horse races and could talk sports all day long.  I ran a lot back then and he dubbed me Matt the Scat.

Before getting back to the topic of baseball, one quick Chuck Barris story. His daughter was a year behind us in school. But when I began working for Chuck directly, I'd often run errands for her. I liked her. Somehow I got her to agree to have a drink with me. But in my cords and my Converse, I was over matched. One and one date only with her. I sent her flowers once. She later reconciled with her old boyfriend.

Back to baseball.  In Seattle for the Big Climb, we all went on a tour of the Mariners Stadium.  I love stadiums. Stadiums and airports, both rank right up there for me. Oh, as do casinos.  Anyhow that Mariners stadium tour was right before this season started. It got me fired up for baseball in a way I hadn't been for decades.  I joined a fantasy league this year. I do fantasy football every year. Baseball I had done once before and it wasn't fun. Too much work. But this season I wanted to play again. I think it gives me something to think about, to focus on. I can check scores on my ipad, I can listen to radio broadcasts for any team. It's soothing. Baseball in the background it turns out is relaxing. I think it is good for my healing process. Tonight  I had to take a bath, hopefully my last for a while. I've had to take baths to keep the port operation site dry.  Tomorrow though, it is back to showers and I can remove the dressing. No more pain, no more swelling though, so that is a good thing. Thursday this week, I do chemo in the arm again. Hello bruise. During my bath tonight, I listened to the last few innings of the Phillies/Cardinals game. It was the only game on. Phillies won.  Interesting note...Philadelphia was one of the more difficult places for Jackie Robinson to play. The manager and the team tossed a lot of racial insults at him.

I want to go to some games this year. We may go to New York this summer. If so, I am for sure going to a Yankees game. I've never been to a game at Wrigley in Chicago or Fenway in Boston. That must change. A Twins game in my virtual hometown of Minneapolis is in order. I better get to these places while I can.

Also of note, I am hosting another Cure Talk Panel talk on June 20. Again the focus will be on myeloma, working and stress. How to manage it all.  I just got an email while writing this that the Arizona Diamondbacks batting coach, Don Baylor a myeloma survivor, has agreed to do the June 20 event. Don is a former league MVP and I believe Manager of the Year. He won the MVP playing for the Angels in 1979 and in fact Chris and I saw him play against the Orioles in the playoffs, driving up from San Diego. Well we left from Poway to be more exact. Chris and I had a roommate, also named Chris, from the SDSU baseball team. Chris number two was from Champaign Urbana, Illinois, but had family in the San Diego suburb of Poway. Chris and Chris once spent Thanksgiving there. I stayed down south at our apartment to go to the crazy family of a girl I was dating. It sucked and I left. In the darkness, I made a 30 mile trip on my scooter that topped out at 25 MPH to Poway.  Mind you it was almost all freeway. Ah, the things we do as kids. Chris number two had a cousin named Kelly, a beach blond. We became friends, but never went out. A couple of years after leaving San Diego, I was visiting Chris number one. He still lives in San Diego. On my drive back to LA I stopped and visited Kelly. She lived on her own and had a young baby.  She was my age. Maybe 22 at the time. I went to the store with her and remember feeling so odd, like folks were looking at us, wondering why such young kids had a baby already.

Don Baylor has agreed to do Cure Talk. Awesome. I'd say going to a Diamondbacks games needs to be on my schedule as well.

How about my myeloma? Well, that's all fine. We saw Berenson Friday. It was a quick visit. He said I am doing great and to keep doing what I am doing. The bad protein in my urine, which is created by the myeloma, is at its lowest point since this journey started. That is good. We also saw the kidney doctor, Dr Levine (I had been going to Doc Zoller, but switched due to her dire predictions for me).  Dr Levine was also happy with my status (and weight loss) and just relaxed some of my dietary restrictions. That is fantastic. Per a suggestion, that means I can have a Blizzard from Dairy Queen on May 2, my two year cancerversary.

Tonight I also read a few other myeloma blogs. Interesting stuff. I learn a lot. I feel stupid at times, I really am not as in tune with the technical aspect of myeloma, as perhaps I should be. But I must be careful reading other blogs. If I over do it, it's like a slap in the face. Reminding me of the power of myeloma and the potential for it to come back. Which is why I need to get to some baseball games It's soothing, healing and will give me something to focus on. Must keep my mind occupied.

I Should Have Stretched Part II

For those who remember, nearly two years ago I started this blog to keep people updated with the status of on my myeloma. I didn't really want to talk to anybody at the time. If you have a really great memory, you might remember that my first post was titled I Should Have Stretched.  It was a tongue in cheek link to the fact that not stretching a lot of my life might have lead to my myeloma.  Back when I used to run a lot or ride a lot, I never stretched. I figured the activity itself would warm me up and stretch me out. I'm not an athlete by any stretch of the imagination, but I used to be fairly fast and strong, with endurance.  I figured I knew what was best. People warned me that not stretching would catch up to me.

Well, lo and behold, I was sent this link the other day by John DiNunzio, a friend who lives in San Luis Obispo.  I'm imagining that when John saw this article, he recollected that earlier post. He's smart like that.  So, for you exercisers, here is something to mull over.

 
Also, here's a photo of me and John taken in Long Beach recently. He was down here for  conference.
 
 

Saturday, April 20, 2013

Amy

Like everybody, I was riveted to the news yesterday as they chased down the remaining Boston Marathon bomber. My thoughts were with the families impacted by this horrific event.  The swiftness with the unfolding of events all week is amazing.

As I've said before, I have developed a circle of friends..fellow myeloma patients....from Twitter.  These friends serve as a cheering and support group. It's really powerful and really helpful.  One such new friend is Amy.  She was on a Cure Talk Panel with me a couple of months ago.  Last week she went to Boston with her husband and two young sons to celebrate her one year transplantaversary.  She was celebrating her rebirthday. One year since her stem cell transplant.  Very momentous.  They went to the Boston Marathon to cap off the celebratory weekend.  I thought about posting her telling of the event here, it's horrifying and chilling.  But instead, I'll just say that her and her family were all injured by the second bomb. They were right at the location of the second bomb. After being separated and a frantic trip to the emergency room, they made it home.  But I can't imagine what they were thinking yesterday as the news unfolded.  I feel so bad, so helpless for Amy and her family. I can only imagine how long the trauma will stick with them, with her kids and with her. They were there to celebrate life.  She was there to celebrate her winning fight against cancer.  It makes everything else seem so insignificant.  Let's all send positive thoughts to Amy, her family and all people impacted by this terrible event.

Thursday, April 18, 2013

Suleika Jaouad

I've mentioned Suleika Jaouad before. She's a young cancer survivor who writes about her journey for the New York Times. Her latest is actually an interview with her. I think it gives a really good snapshot into the head of a cancer patient.  Here's a link. Take a read.
http://well.blogs.nytimes.com/2013/04/18/life-interrupted-a-chat-with-suleika/

National High Five Day

Today was National High Five Day. I hardly even knew it. I gave one high five at work and that was it.  Oh, I did get a couple of high five texts and emails. I've always liked High Five Day. It's a relatively new holiday in the holiday lineup. But I like giving high fives and I am kind of disappointed that I didn't get to embrace the day today. But this week has been absolutely way too fast paced to allow me to slow down and enjoy.  Between too many work meetings all week, and having my port taken out on Tuesday, plus a follow up visit with Phan today and a procrit shot, I'm shocked that tomorrow is Friday. I don't like Mondays, and Friday got here way too quick.  Meaning another Monday is almost here. That's not the right attitude for me. I shouldn't be dreading Monday's arrival. 

Tomorrow is also visits with Dr Berenson and Dr Levine, the kidney doctor.  Monday I turned in my 24 hour urine and did some blood work. I picked up the results today.  Creatinin inched up a bit, which is to be expected after chemo.  My total protein also inched up, but the very good news is that my upep dropped to 25%.  That is as low as it has been ever.  We apply the 25% to my total protein, to get a number for bad protein.  My number for bad protein is pretty darn low right about now. I am curious what Berenson has to say about the total protein going up, but the bad protein going down. Perhaps I ate too much meat this past week. That can have an effect. 

Oh I forgot to mention that I had that job interview I bitched about. Note that this isn't the job that I really want (that is still undecided).  But this itnerview was for a manager position in my current division. Skipping to the summary...I didn't get the job. I expected that, not a surprise at all. But I did dominate in my interview and for that I feel good. I've heard from the word on the street, so to speak, that the folks on the interview panel were impressed by my performance. It's just that the job wasn't meant for me. I'm happy though, because as I have discussed before, this cancer thing has been a plus to my self confidence and my approach to things. It's an odd, unexpected outcome of all this. I'm an improved communicator and much less unhappy with myself.

This fast paced week has me thinking again about what it all means. My goal is to enjoy every day and appreciate things and people around me. But when I'm whirling away on this fast paced treadmill, I get stuck in the routine, and the appreciation of life gets covered up. My energy is absolutely not what is used to be. I'm constantly low on blood, so it's no surprise. But at times I worry and am frustrated by the fact that all my energy goes towards work and making a living and staying insured. Shouldn't my energy go towards living life? How do I push the envelope, if at night I'm tuckered out from the rat race? 

Also, because of the port situation (and now port removal recovery)  I haven't been able to exercise in several days and I have a few more off days to go. That sucks, I was finally getting into tip top shape and now I get derailed. I'm 51 and even without cancer, it's much easier to get out of shape and much more difficult to get into shape. Throw in the cancer, and I have to work that much harder. It's a bummer that I busted my ass to get into shape and now after a few off days, I already feel the fat being packed on and muscle mass fading away. Next week, I get back to it. It's vital to my mental state and fighting off the effects of the myeloma and the steroids.  There's no off day. No bye week. Us cancer patients are on every day. Every day is game day. Every minute is go time. Which is why I can be seen pumping myself up several times every day. Pre game talks with myself are standard practice.

Foward and upward. High five everybody!!!

Tuesday, April 16, 2013

Splish Splash

5,4,3,2,1...and write. Well, I had my port a cath removed today. I wish they had warned me that I couldn't shower for a few days afterwards. If I had known, I would have showered this morning before going to the hospital. Instead, I went dirty and tonight I had to take a bath...a la those many months when I had a perm a cath and couldn't shower. I did listen to the new Justin Timberlake while taking my bath, so I guess that's a plus. It's curious, I will unabashedly tell anyone that I am a big fan of the song The Climb by Miley Cyrus. It's actually pretty motivational. But my growing Justin Timberlake appreciation I keep a little bit more on the down low. I do have my street cred to maintain.

We went to Long Beach Memorial at 8 this morning. It was a bit surreal walking in to the hospital. I spent a fair amount of time of there in the first year of my diagnosis. And during those times there, I wasn't always feeling too good. But today I walked in, feeling fine. It's just shy of two weeks of my diagnosis and getting my port. The nurse who prepped me was the same as before. The nurses and doctor who took the port out were the same as previous. So I really had that full circle experience.  The removal process itself took perhaps 20 minutes. They give a light dose of anaesthesia and a local, so I didn't even feel it.  When I was first diagnosed, I noticed that when I close my eyes, I can see shapes and figures, and depending on my mind set, those shapes can be frightening or soothing, Early on, those shapes were scary and ominous. I'd see nasty evil faces. Then as I started to do better, when my eyes were closed I'd see happier things. Smiling faces, clouds, trees, moving objects. During my acupuncture treatments, there is a whole lot of activity underneath my eye lids. I know my eyes move around watching these things and I wonder if someone could notice that.  Today during the port removal, all I saw were flat, smooth clouds, across the whole sky. No faces, no wildlife, just clouds. Kind of interesting.

They let me keep my port as a token of my journey. That thing has served me well. I need to let the wound heal for  a few days, then I can get back to working out. Tomorrow is back to work, and I already know it is going to be a busy day.  It's such a funky transition, going from hospital one day to work the next. I am sort of trapped in two worlds.

No lab results yet. I am anxious to see those. Friday is still Berenson and the kidney doctor.  And...I'm out. Until later.

Thank You Port a Cath

After nearly two years of taking care of me, I am proud to present my Port a Cath.

Getting Prepped





Bye Bye Port a Cath

Today is the day. There goes my security blanket.

Monday, April 15, 2013

It's Monday. The Week Ahead

- Turned in monthly 24 hour urine this morning and did blood work.  This is the big test and I'm a little anxious, just given the other little things I've had going on.
- Tuesday I get my port removed. As I said it is bittersweet. It makes chemo so easy and is a bit of a security blanket. Last Friday we did chemo through normal iv in my hand. Not too bad, except I bruise easily and now there's a bruise on my hand.
- Friday is Berenson and Levine (kidney doctor).  I didn't see Berenson last month, so we'll see how that goes and hopefully kidney doctor has more good news for me.

And that is all. Hope everyone has a good week.

Sunday, April 14, 2013

24 Hour Collection

And the monthly 24 hour collection begins at 5:06 AM April 14, 2013. We're looking at 24 protein and creatinin clearance.

Saturday, April 13, 2013

Kobe Bryant's Public Pep Talk to Himself

I am now a huge Kobe fan. He posted a long post on facebook, walking himself through his injury. It started with him being unsure he can come back from this. By the end of his venting, he was fired up and ready to battle. Who knew that Kobe would motivate me right when I needed it? Interesting how things works. Take a read.

This is such BS! All the training and sacrifice just flew out the window with one step that I've done millions of times! The frustration is unbearable. The anger is rage. Why the hell did this happen ?!? Makes no damn sense. Now I'm supposed to come back from this and be the same player Or better at 35?!? How in the world am I supposed to do that??
I have NO CLUE. Do I have the consistent will to...
overcome this thing? Maybe I should break out the rocking chair and reminisce on the career that
was. Maybe this is how my book
ends. Maybe Father Time has defeated me...Then again maybe not! It's 3:30am, my foot feels like dead weight, my head is spinning from the pain meds and I'm wide awake. Forgive my Venting but what's the purpose of social media if I won't bring it to you Real No Image?? Feels good to vent, let it out. To feel as if THIS is the WORST thing EVER! Because After ALL the venting, a real perspective sets in. There are far greater issues/challenges in the world then a torn achilles. Stop feeling sorry for yourself, find the silver lining and get to work with the same belief, same drive and same conviction as ever.
One day, the beginning of a new career journey will commence. Today is NOT that day.
"If you see me in a fight with a bear, prey for the bear". Ive always loved that quote. Thats "mamba mentality" we don't quit, we don't cower, we don't run. We endure and conquer.
I know it's a long post but I'm Facebook Venting LOL. Maybe now I can actually get some sleep and be excited for surgery tomorrow. First step of a new challenge.
Guess I will be Coach Vino the rest of this season. I have faith in my teammates. They will come thru.
Thank you for all your prayers and support. Much Love Always.
Mamba Out


More on Routine and the New Normal

Curious how I can get thrown off by something like a sore port and missed workouts. Yesterday should have been bike to work, today should have been biceps and back and cardio. Tomorrow should be chest, shoulders, and triceps. Monday should be bike to work.

All those things are out the window. Chemo yesterday prevented the bike to work. Then today I was going to just do cardio, but opted not to just to be safe. I'll wait until the port is safely out and the small chance of it being an infection is ruled out. Leslie, as my caregiver, was happy with that decision. Tomorrow's workout is off, because it directly impacts the port.

Monday's bike ride to work is off, because I have to go to the lab and turn in my 24 hour urine and do some blood work. Carrying a jug of urine on my bike? Not so much.

The port is still sore and swollen but much better. I'm still nervous about it coming out. Not the process itself, but the ramifications. However, my mom sent me a message and I reminded myself, having the port removed is actually a good thing. It's a sign of progress and having control of the myeloma. I'm now super anxious to do my monthly labs to see actual proof of continued control of the cancer. I'm fairly confident we're doing good. But I need to see the numbers.

I took Gracie on a long walk this morning and went to Trader Joe's and the cleaners and Starbucks. Normalcy!!!  I wanted to do all these things as soon as I woke up, as sort of proof that I'm still doing great and that we got this.  Walking Gracie is good because it's my chance to give myself a pep talk, a la an athlete getting ready for a game. Some clapping, some talking to myself, some bouncing. That shit works. I am sure cars driving by think I'm nuts. I came home from the walk fired up and ready to go. I've already got a new lean and mean schedule in mind. Friday. Friday will be cardio, biceps and back. Friday is Berenson. Then I'm back on Lean and Mean.

Chemo was yesterday afternoon. This means dex and insomnia. I slept perhaps 3 hours last night which isn't too bad. And I am wired this morning. I fired off a handful of emails to long lost people at 3am, making sure to tell them I wasn't drunk emailing.

My mom also mentioned to me she might have a new reality and a new normal. But that's ok.  Monday night we went to dinner with a couple of friends. The husband was diagnosed with some kind of cancer in the neck. He starts radiation and chemo next week. Sucks but it is curable. 7 weeks of treatment. So they wanted to discuss how you deal with a new normal. They now have a new normal. It's frustrating at first and maddening that we have to change things up. Arghhhh, is a typical reaction. But again, my message to my mom and our friends is that a new normal, if unavoidable, is ok. We can make incorporate it into our lifes. I'm not saying I don't get irritated, as evidenced by my snap the other day. But generally, we move forward. So stay well everyone. We're all in this together.

Oh one last note before I sign off. Getting my port out next week is sort of appropos. It's right before my two year anniversary of being diagnosed. Nearly two years with the port is enough. I'm good to go. Also of note, port removal is scheduled for April 16, the day before what would have been Ed's birthday. He passed away several years ago. Early on in this adventure, I had some rather vivid dark rainy dreams, where Ed would intervene and not allow me to go where I wanted to go. I seriously took this as a sign or message from up above that it wasn't my time to go yet. I'm not religious and only recently have become a bit spiritual. But I absolutely believe that Ed stepped in and helped me get through this.

Tuesday=Port Removal

I'm scheduled for having my port removed Tuesday morning. Yesterday we did chemo in the hand and it was no problem. Losing my port is sort of bittersweet. It's been my comfort food for myeloma.....if that makes any sense. Having the port makes me feel secure, in an odd way. I could keep it, it's doing better. But if every time I work out or do something atypical it gets messed up, then it becomes a hinderance. Now, IF, I were to start up more intensive chemo again, I could put it back in. Doing chemo once every two weeks, no port is ok. Weekly or twice weekly chemo would absolutely require a port. We're not there now. So bye bye port....you've served me well.



Friday, April 12, 2013

No port, no problem

Can't use the port, so back to this.

What Could Have Been

Back in the day, I wanted to live in Las Vegas in a condo up above the strip. That was my goal.  For chuckles and old times sakes, here's a little promotional video about what I'm talking about....

http://www2.citycenter.com/offers/2013/02_mor_video/landing.html

Messed Up Routine

I'm a creature of habit. I like routine. I like to know that in the ten days, I'll be riding my bike to work or that in 26 days from now, it's a gym day or that Tuesday next week I am eating Pollo Loco chicken. As I've gotten older and married, I've learned I need to have some flexibility with my routines and my schedule.  But I think with the myeloma, keeping on a schedule and maintaining a routine is super important to my sanity. 

Yesterday was a tough day though.  For one, my port has been achy and swollen for a few days now.  We saw Dr Phan yesterday to have him take a look at it.  A brief note about Dr Phan...in my opinion he is a one of a kind doctor. I love him. Not only did we talk about my port, we also talked about macs, bike seats, kickstarter and various other topics. It's like he's a regular person and he's an oncologist.  With regard to the port, he said I definitely irritated it and need to give it a rest for a few days, i.e. no working out.  That sucks.  I was just getting into my new workout program and now I already have to take a break. Hate that.  To avoid this happening again, I am considering taking the port out.

Another slap to my routine centric mind, was that chemo yesterday didn't happen. I HATE missing a single treatment. That is a routine that I am not flexible with. So yesterday I came home from work with every intention of going to chemo. But Leslie told me that some how I wasn't scheduled and my chemo drugs hadn't been ordered. I was pissed. WTF.  The drugs have since been ordered and I'll get chemo today and it shouldn't be a big deal.  But a day delay is not good.

And then there are the spin off effects from no chemo.  I had plans for my insomnia filled night. I was going to work on the Big Climb video. I had it all planned out. Where I'd sit with my computer, in what order I work on the clips, etc, etc.  I'll have to do it tonight instead. But come on! It was on my agenda for last night.

And then, since I need to go to chemo today and I'm only working half day, I couldn't ride my bike to work. Monday and Friday are bike days.  But since I am now working half day and then going straight to chemo, I don't have the extra time it takes for the ride.  No relaxing Friday afternoon ride home along the coast. Instead I'll be all jacked on steroids.

With chemo today and with the port issue, we'll do chemo through the arm.  Something I'm not used.  I'll see how much it agrees or disagrees with me and then I'll decide whether I keep the port.  As I've said before, I haven't had horrible reactions to the chemo regimen I am on.  But a part of my brain is worrying that if I do chemo in the arm and not in the port, I might have some of the side effects that I've been able to avoid. It shouldn't make a difference, but you know I'll be worried about it for the next few days.

Sunday is my monthly 24 hour urine collection day.  I skipped Berenson last month, a first. We see him Friday April 19.  Given my little issues this past week, I'm anxious to do the monthly labs and see that everything is still stable. Ahhh, the mind games of myeloma. Worry. Don't worry.

Anyhow, here's a picture of the swollen and red port.

Thursday, April 11, 2013

My Bleeping Port

Love might be too strong a word. But I am very fond of my port.  It's makes chemo so easy. No needles in the arm, no arm bruising, easier to move around during treatment.  A couple of months ago, we thought it might either be infected or have moved around. We did some blood work, an ultrasound and came up with nothing. We thought something had happened to it, because it was a bit red and swollen and sore.  It cleared up.

Well, right now, the fricking thing is super swollen and super sore. I've been working out more and being more active, so I'm guessing I irritated it.  We see Dr Phan today, so he'll take a look at it. My guess is he'll suggest taking it out. Which I'm fine with. Despite my fond feelings for the port, if it's going to interfere with my lean & mean program, then maybe I should get rid of it.   I guess we'll see.

Informal Poll

hey folks, question or two for everyone.  When you think of cancer, what do you think of.  When you hear that someone (or you have) has cancer, what do you think? What's your image of a cancer patient?

There's a point to me asking.  And please, don't hold back. I want real answers.  thanks.

Wednesday, April 10, 2013

Haircut

So when I was first diagnosed, I thought for sure I'd lose my hair.  Thus I decided I'd cut it all off in preparation.  Matt Arms even had a hair shaving/cutting party, where some co-workers, in solidarity, all cut their hair off as well. I ended up not losing my hair. I've kept it all through my various chemo treatments, drug mixes, etc, etc.  The funny thing is that I now have almost zero hair on my legs. They are smooth as all can be.  Since then I've either kept cutting my hair super short or I let it grow till I have a mullet, at which point it all gets cut off.

I've needed it cut lately.  But this time, we didn't want to just cut it all off.  Instead I went to an old school barber shop; except the old school shop is really a hipster, wanna be old school shop.  The only cool thing about the shop is they give you a beer, PBR, when you walk in.  Proving their bonafides as a hipster spot.  However, that was the only cool thing about the shop. I told them what I wanted and they did the exact opposite.  And of course I don't get to see it until it is too late.  Anyhow, I've always had a bit of anxiety with haircuts.  My program of just cutting it all off for the past two years was working pretty well. No anxiety, it's just cutting the hair with trimmers (number 7).  But coming to work today, I had a little bit of the apprehension about showing up with the new cut and and super white skin showing where hair had once been.  It's like back in elementary school days, where kids make fun of you for anything.  However, so far today, the cut is being well received.  I'm still not a fan of it, but I guess it will do.  And the upshot is I still have hair.  I'm 51 on top of all this, so if you put aside the cancer, you'd think I'd be losing it, but nope.  Although, writing this post has probably just jinxed the whole thing and when I wake up tomorrow, I could be bald.

Monday, April 8, 2013

Wind + Univega = Bad Idea

It's Monday. My lean and mean program requires me to ride my bike to work on Mondays.  I have two bike options. A Giant Seek that is fast and smooth.  However, I need  a new seat post. So I rode bike number two, my 25 year old univega that was my college graduation present from my Mom.  I recently had it cleaned up and upgraded a bit.  But all the tweaks in the world won't change the fact that this steel bike weighs a fricking ton. It's no speed machine.

Well, little did I know that today was going to be a windy day. Real windy.  So riding in today on the univega, I faced a massive headwind almost all the way. Normally, I can do the commute in about 50 minutes. It's ten miles and I do it at a leisurely pace.  Well today it took over an hour and a half, what with the wind and all. It was a job making it to work. A jogger even passed me at one point. I am really hoping that going home the wind hasn't switched direction. If it stays as it is now, I'll be home in half an hour, easy. Fingers crossed.  I suppose the upside to all this, is that I rode in, it was difficult and I'm no worse for the wear.   Below you will find a picture of the old tank/univega.

I did lab work on Saturday. Basic blood work...CMP and CBC.  Got some results this morning.  White blood cell count is great; 5.0. Hemoglobin is a little low; 9.4. So I'll get a procrit shot Thursday after I wrap up chemo.  Creatinin is 3.87. That's still good, but I had visions of being under 3.  So I'm a little disappointed. But it is all about trends and the trend is heading in the right direction.  Plus, as long as that number doesn't go up significantly, it means we still have control of the myeloma and the protein it produces.  There is a possibility that scar tissue on my kidneys means this is the best I will get. But I don't believe that.  Chemo, exercise, eating right and acupuncture will bring those things back to a healthy number.  There!!! That's my self directed pep talk for the day.

Also note that tomorrow is April 9. It's my Mom's birthday.  It's also my half birthday; six months after October 9, my birthday.  I've always liked to do a little celebration for the half birthday.  But I'm a little torn on how momentous it is now, given May 2 is my re-birth day.  May 2 is diagnosis day and it'll be two years in a couple of weeks. It feels like a re-birth. So I wonder if it's a little self centered to celebrate the half birthday and the re-birthday. Hmmm. Something to ponder.

Sunday, April 7, 2013

Seriously..Go Huskers!!!!

And here is the video. Guaranteed to make you smile,

https://www.youtube.com/watch?feature=player_embedded&v=_Jmisv1Spck

Go Huskers!

Bravo to the Nebraska Cornhuskers for allowing a 7 year old cancer victim to score a touchdown in their spring practice!



Saturday, April 6, 2013

It's the Shoes....Phew

Aha, We figured it out. A couple of weeks ago I got four pairs of shoes from Zappos. 3 were casual and one was a brown work shoe. The 3, I returned, didn't like the styles. The brown I've been wearing this week. And I thought they felt kind of tight and narrow. I've got wide flat feet. Well, that' s why my foot hurts. It started to ache when I started wearing those shoes. They're too tight and squeezing my previously injured foot. F those shoes! They are gone. Whew. One less thing for me to worry and be irritated about.

Ouch

Well, yesterday was day one for my new back and biceps workout. Yesterday was also massage and acupuncture. Maybe not such a good idea. Sore! My old foot injury still hurts. My port is swollen and sore. This happened once before. We did an ultra sound, tested for infection and came up with nothing. It turns out I have to be careful with certain exercises, because they can move the line from the port. And irritation ensues. I guess I did it again. It's a real balancing act. I need to do weight bearing exercises to keep the bones strong and stimulate the marrow to produce red blood cells. But I need to be thoughtful with what I do.

So....massage, workout, acupuncture....back to back to back has left me sore in many places. Today? Take it easy. Tomorrow? Back at it.

Today is also lab day. Basic blood work. Results Monday. I'm sensing continued kidney improvement.

Friday, April 5, 2013

The Morning Lineup

What we have here is my basket of pills. The majority I take in the morning. Depending on the day I take any where from 7 to 12 pills in the AM. Plus a couple after each meal. We have an oral steroid, antibiotic, zemplar, allopurinal, alpha lipoic acid, baby aspirin, and a bunch of other stuff.  More than half of what I take are for the kidneys, including a phosphate binder. Traveling now takes a little time, I organize them into baggies with days and time of day. But when I take the meds at home, I simply grab them from the basket, following the exact order on the spreadsheet created by Leslie. I've tried those containers that you can organize them all, but it just didn't work for me. Grabbing them from the basket and following the spreadsheet is what works for me. And the key is, I do it as fast as possible. I'm not sure why, but I power through the basket.  Zip, bam, done. I remember my stepdad, Ed, would grab his handful of pills and launch them into his mouth He'd often miss with a couple and would have to scramble to find a pill or two rolling on the ground. Or often he didn't even know he missed with a couple.  I've done that as well. One pill is small and round and several times, I've had to hunt for it. Usually I get through them in two swallows. Oh, I also take a nasty tasting liquid called sodium cytrate that helps to flush the kidneys. They try to make it taste grape-like, but with little success. This I take in a shot glass. Makes it more fun.  And that is the morning lineup.

FUMM

I'm off work today. So it is gym followed by massage followed by acupuncture. Mind and body must be strong and aligned. Happy Friday everyone.

Thursday, April 4, 2013

More Discipline

Off work tomorrow. Working out, acupuncture and get new shorts. Focus time. Lean and mean in twenty thirteen! I'm not messing around.

Hold on to your hat

I drove Leslie's car to work yesterday. When I take my car, I take the fastest and least scenic route home. There's no reason to prolong  the peak hour drive. What's interesting to note is that when I drive Leslie's car, I put the windows down and take the longest, most scenic way home, along the coast. It's almost like driving a different car is a mini vacation. I'm not in a hurry, not rushed, not anything other than serene.

Driving home yesterday, I went down the coast and then through an area known as Belmont Shores. On 2nd St in Belmont Shores, I caught a red light. Looking to my right I saw Legends, a landmark sports bar/restaurant in Long Beach. They have a whole lot of tvs and a view of all the activity on 2nd Street. My kind of place. I saw a handful of people with cold beer, food and various baseball games surrounding them. A little bit of envy crept in. I thought how that used to be me.

Hanging out, no matter the day of the week was how it was done in my younger days. I could easily waste a day or every day sitting somewhere with a couple of friends, drinking beer, watching whatever sport was on. I made a mental note to touch base with a friend who I don't see very often, to see if he wants to watch the final four games this weekend. The point was that whlile I sat at the stoplight I considered how things have changed,. Nowdays I'd rather come home to a safe happy home as opposed to sitting in a bar.  But also I thought about how even if I wanted to, I couldn't sit somewhere all day like I used to. But why is that? I'm older? I have reduced energy from the myeloma and low blood counts? I feel pretty darn good. Things seem normal. But at the same time, can I even remember normal.  Perhaps my usual bit of tiredness that I now carry with me isn't how I felt three years ago. I don't even know any more. Myeloma is funny. It lingers and hovers forever, basically. But other than going to chemo once every two weeks, I don't really think about it. If someone said I was completely cured and I could be worry free from this point on, I'd agree. I don't feel anything, The problem is that I've been told myeloma is incurable. It'll always be there and as things stand now, it could come back any day.   Every day, there is a fleeting moment where I think "oh shit, I'm tired today because the myeloma is kicking in." My rational side  knows that that is a ridiculous thing to worry about. I'm doing real well, life is great, and it's pointless to think about what might happen.  I really do try my best to not think about it. I joke around with people, I work, I eat, etc etc. All normal things that make me feel like everything is all right, that I made it through the tunnel. Stay positive. Nothing is wrong.

I've been thinking a lot about stress and attitude lately, and the role it plays in our health and more specifically with cancer.  I suppose I'm thinking about partly because Monday I had my snapping moment. I'm better now, but it got me thinking about my mental state. When I was first diagnosed, Leslie and I really wanted to de stress everything around us. Minimize that shit. We went to a cancer coach to learn tools for making things happen. There's a young woman who blogs for the New York Times about her cancer journey. Her name is Suleika Jaouad and her blog is absolutely one of my favorite things to read. Check it out. Anyhow, it's interesting that from reading her story and others, I've come to realize that so much of what I feel, worry about, and deal with is typical. I'm not alone with my roller coaster thoughts and emotions.  In a couple of posts from several months ago, she talked about how her life has changed and how she's grown since the diagnosis. She'd prefer not to have cancer, but is proud that she has been able to achieve so much since her diagnosis. She discusses how that with her changes and the diagnosis, came  relationship changes. People all deal with this differently. She also had a recent post about a friend she met in chemo who passed away. That right there is a reminder that this is serious shit. It's not just fun and games. Despite my living normally and thinking positive, there it is again, myeloma hovering and lingering, Oh I don't know. Perhaps being blissfully ignorant is just who I am. Just block things out or pretend like I didn't even notice.

Which brings me back to stress and attitude. I posted an article the other day that basically says having a positive attitude doesn't increase your chances of beating cancer. I beg to differ. If you just look at attitude itself, all on it's own, then sure it doesn't have an impact  But if you look at the spin off effects of your attitude, positive or negative, it'll increase your odds. A positive attitude allows to you to focus on health doing everything you need to do. As opposed to a negative attitude which can paralyze you. I think I'm prone to a bit of depression and self loathing, so I feel like for me, maintaining positivity is super vital in this fight.

But what if it doesn't matter what I do? Some people survive and some don't. It's kind of like that question that I ask myself, and I'm sure others do, is that did I do something to earn this. For me, I do have a sense of karma playing a role in my diagnosis and the myeloma is balancing things out.  But if I had it coming, does everyone else who has cancer deserve it. Absolutely not. Of course not. That's an insulting concept. Nobody deserves it. Not kids, not adults, nobody. That, however, puts a big hole in my theory that this is my fate. It can't just be me that deserved cancer. Since  nobody deserves it, then neither do I. Fortunately I have another theory of the cause of the myeloma and this one I'll hold on to.  During my second round of chemo two years ago, I  had a breakdown, tears, fear and asked the question why me. Very dramatic. Very traumatic. It was horribly frightening.  Compared to 23 months ago, I am at ease now. I suppose some of that comes with knowing I made it through the hard part. So with regard to why me. If it's not fate, then it's something else. About a year before my diagnosis I had foot surgery to remove a spur that was the result of childhood accident when I stepped on a nail, it went through my shoe and hit a bone, causing a bone infection. The spur I had removed was a result of the bone infection, My theory, discounted by my doctors, is that the surgery unleashed toxic stuff that had been stored away in the bone spur. And the toxic stuff led to myeloma.

My foot has been much better since the surgery. Although lately and particularly yesterday it gets sore again. After I got home I was changing shoes to walk Gracie (Mr. Roger's style) and I realized that wow, my foot kind of aches like it used to. Well, that sucks.  I've been real fortunate that I haven't gotten neuropathy from the chemo. For a lot of people, they have super painful feet and hands. Maybe I am experiencing neuropathy, but just in the area of surgery. The nerves were moved around during surgery, so maybe they are hypersensitive because of that. Perhaps the foot isn't aching because the old injury is rearing its ugly head. But whatever!  There is no way in hell I would do anything to fix my foot if it needed fixing, Are you kidding? Absolutely not.

During the Cure Talk panel I did a couple of weeks back, one of the panelists said studies are showing that stress or the lack thereof doesn't impact your chances of surviving cancer. In fact he said, he thinks stress could be good in that it wakes up your body and your immune system and puts your body in the fighting mode.  That is kind of what acupuncture does....heightens your immune system, allowing it to fight stuff.  I'm paraphrasing him, if even that. But what I got from him is that stress might not be all that bad. Combine he views with studies that are saying having a positive attitude doesn't help, and I'm left scratching my head. I feel like what I am doing is working and I'm going to keep doing it.  I'm going to continue to stay calm, think good thoughts, and move forward. Crap ass days like I had Monday are bound to happen, But for the most part, I plan to stay positive and perhaps blissfully unaware. Whistling dixie. Myeloma. What myeloma?

Tuesday, April 2, 2013

And another reading assignment...

An artlcle about the impact of a positive attitude on cancer recovery. I might differ with this story. Thoughts?

http://www.kevinmd.com/blog/2013/03/cancer-patients-positive-face-terrible-adversity.html

Good story about why It's Never Too Late

Nice story from Huffington Post about the second chance cancer provides.

http://www.huffingtonpost.com/joannamontgomery/never-too-late_b_2999957.html?utm_hp_ref=email_share

Better

In much better frame of mind. Mental serenity = better health

23 Months

The countdown to two years since diagnosis starts now. Bad attitude aside, I am feeling good.

Monday, April 1, 2013

And...here it is....the Snap

I've talked many times about how so much of this myeloma journey is mental.  Balancing everything. Balancing everybody. It's tricky and can wear a person down.  Tomorrow marks 23 months since my diagnosis.  I'm doing fantastic.  Rode to work today.  I've got a new work out program that I started Saturday.  It's Saturday and Wednesday at the gym. Monday and Friday are bike days. 

Have many of you have watched the tv show Breaking Bad? It's an awesome show. The fifth season should be starting up soon. The premise in season one is that a normal guy, a high school chemistry teacher in Albuquerque, is diagnosed with cancer. His prospects aren't good.  He decides he needs to do something drastic to take care of his family, financially.  So he puts his chemistry background to work and becomes a crytal meth manufacturer.  WTF does he care, he's dying from cancer and he's gonna do what he has to do.

In some ways, I've been waiting for my moment, when I say fuck everything and do whatever I want.  I haven't really had that.  When I was diagnosed it was more shock, sadness and disbelief.  I had some mad moments, but nothing huge.  In some ways, I've been waiting for that all out, I'm angry, I break stuff moment.

This morning, getting my bike out of the garage, I knocked over a box of glasses left over from the wedding. I've bumped into them before, but did I bother to move them so it doesn't happen before? Nope, left them right in the same spot.  Well, this morning I knocked them over and several broke. I snapped. I was pissed.  It's an hour later and I'm still irritated. But it's not the glasses that I'm mad about. I think the glasses might have been the final straw.  I'm busting my ass at home and at work and being super damn diligent and careful about everything I do, everything I think, everything I eat. That's just how it's going to be.  But fucking shit, the world around me isn't always accommodating. I'm thinking about a waste of time interview for a promotion I have tomorrow.  It's a sham, they already know who is going to get the job. The other person, who I like and consider a friend, is absolutely qualified and a good fit for the job.  But it's not me and I have to go through the charade.  Prior to my diagnosis, I think I would have had a better chance.  Now I'm damaged goods.
I've been thinking a lot about how I got to this point in life. Thinking about friends and family and mentors and role models and supporters and all that.  I'm mad about that. Mad at myself for decisions I've made. Mad at others for making things about themselves. Mad at others for not guiding me, when I needed it.   It's foolish to rehash the past. It's best to look forward.  But damn, I'm pretty mad about a bunch of stuff.

I'm kind of thinking I've snapped. It's coming up on two years and it took this long, but I might have hit that point. We'll see. Let's see how I rebound today and this week.