Tuesday, October 30, 2012


For those interested, latest numbers....  WBC 2.9 Hemoglobin 12.0 Creatinin 4.43  Total 24 hour Protein 1,318  and UPEP (bad protein) 48%.

Bam! Everything holding steady after five (Four?) cycles of maintenance.

Monday, October 29, 2012


Well, it's Monday, my least favorite day of the week.  Thursday we see Berenson and Levine, the new kidney doctor.  All should be good. Friday I got my preliminary blood results.  Hemoglobin good. Creatin holding steady at 4.4.  Now just waiting for protein counts.  I'm sure both doctors will say to keep doing what I'm doing.

A little grumpy today...particularly bothered by the financial, physical, mental part of this.  Yes, I'm doing great. But fuck, guess I'll be doing maintenance for a long time. Steroids are making me puffy and fat. Saw a side picture of me and my pregnant  looking gut was sticking out and I've got a good double chin going.  superficial, yes. but bugs me nonetheless.  In a couple of weeks, we see the dentist, which is good given I've got a funky tooth and I am finding my teeth are a little sensitive to cold food & drinks. That's new.

On the positive front, Leslie and I are taking a mini honeymoon down to Mexico in a beach house owned by my house. It's a gift from my Mom...we're super excited. Planning to spend a whole lot of time in the water. Pool and ocean. Borrow some fins, etc to do a little bit of snorkeling.

And that's it. fun stuff, eh?

Thursday, October 25, 2012

Go Vikings!!!

Minnesota Vikings are 5-2.  So far a big surprise, they weren't expected to be so good this year. Tonight they're on prime time for the only time this season. Who's excited? I'm excited!

Wednesday, October 24, 2012

Age is creeping around the corner

Well, got the result of my skeletal survey and full body x rays.   For the most part, everything looks good, joints are good, blah, blah.  But the bone density test did show osteopenia in my back. Osteopenia is a pre cursor to osteoporosis......loss of bone density.  Likely I'm experiencing osteopenia due to all the steroids I get which inhibit bone growth/rejuvenation.  Such a fine juggling act, this myeloma. I need the steroids to keep the disease in check, but here come side effects.  On the positive side,  we're in the chronic phase of the disease and we actually have time now to worry about these other things.

There are meds to take which help bone strength and growth. But a hiccup there is my kidneys, which might not be able to handle some of the bone drugs. Next week is the kidney doctor along with Berenson, so we'll talk about the options. I have no pain and really wouldn't notice the osteopenia. But it's something we need to keep our eyes on and keep in check.

Also important are weight bearing exercise and getting sufficient calcium & vitamin.  Curiously, swimming and bike riding are non weight bearing.  So more walking and strength training for me. I've been swimming regularly, and will keep doing it, but I just have to recognize that it doesn't replace the weight bearing stuff. 

I've also got a tooth that is looking a little funky, probably a result of the chemo.  I need to get to the dentist and have it checked out.

Ironic,  I've always been young for my age. But definitely starting feel like I am now old for my age. All these little things.  So, we keep forging ahead.

Tuesday, October 23, 2012

Tuesday, October 16, 2012

holy shit

holy shit, right after I published my latest post, someone came in my office to tell me that an ex-coworker...who sat directly next to me, passed away last night.  He was probably in his mid 50s. shit man...shocking news. Guess in answer to my previous post...we got to enjoy and embrace every single god damned day.

RIP Steve Macias

routine ho hum

Well, not much going on.  I haven't got my skeletal survey back yet. As I said, I don't have any bone pain, so everything ought to be ok.  I'm definitely curious, but I imagine when I go to Dr Phan next week I'll get those results.

Today I get a procrit shot. It's to help my blood count, which is kept low by the chemo and host of drugs I take.  I'm feeling pretty energetic, so I don't think I'm that low, but we'll get the shot anyhow. Last time I did blood work was a week and a half ago and I was low.

I'm pretty much working full time. Only time I miss work is when I have chemo or an appointment. I do my maintenance chemo  once every other week. I see Berenson once a month. I take a host of meds at home. I work out. It's all pretty much routine at this point. Which is a good thing for sure.

But this also brings me to the point of this post. Routine.  For quite a while there I was just happy to go to work, to walk the dog, to hang out with Leslie and friends.  All of that seemed great and such a welcome relief.  But as time goes by, I find myself falling into old habits. Bored with work, getting a bit unmotivated.  I find myself plotting, scheming, day dreaming about doing something else, about finally doing what I should be doing. But shockingly after all this, I still don't know what it is. Don't get me wrong, I'm super happy with how I am doing and super happy with my life.  Things are great.  But the mind is funny. Or maybe my mind is funny. I think too much about routines, I think too much about needing a passion.  I find it weird, I have this life altering experience, I'm a better person, happier person, more appreciative of everything and everyone around me.  But at times it is not enough. There needs to be more.  There are times I wish I could shut the old noggin down and just be.  But like I've said before, compared to where I was last year at this time......this is way better. Generally I'm at peace with myeloma.

Sunday, October 14, 2012

Felix Baumgartner

Not much new with me. Haven't heard the results of my skeletal survey. But feeling good, working out, etc, etc.  I did watch the live stream of Felix Baumgartner parachute fro space. 24 miles up!! Amazing, absolutely amazing. Paraphrasing his words a little bit....Sometimes you have to go very high to see how small you are.

Wednesday, October 10, 2012


Turned 51 yesterday. World of difference from my 50th birthday. The 50th was nice, with my mom throwing a party with friends and family. But I wasn't quite out of the woods yet. For my 51st, I worked half day followed by maintenance chemo. I believe it's the start of cycle 4. The cycle number is becoming less relevant as we move forward.. Maintenance is becoming a thing I do. Like breathing or going to the gym. Part of my overall health routine. Talked to Dr Phan. He said the skeletal survey wasn't back yet. Naturally part of me thinks he just wasn't telling me, because it was my birthday. I doubt that, but you know how the brain works. The results aren't important in terms of my treatment, but is key for me and my peace of mind.  Creatinin is 4.46....trending down, improving kidneys. As long as I watch my diet and more importantly, as long as we keep the myeloma created protein down, we ought to have continued improvement.

After chemo Leslie and I did go out to eat. Nachos! Something  I've been craving but can't have. One splurge day ought to be ok. Nachos were followed by a pedicure. Pretty fricking relaxing. Tonight it's insomnia due to my steroids.

Work has been fun this week. Interviewing bike path consultants. My favorite project is finally moving ahead. Friday night is a trivia bowl event that our communications group is participating in. i was able to convince them that  I'm a trivia whiz. I used to be, but my brain is a bit foggy of late....so I'm a little worried that facts will get stuck in my head at the event. But I guess we shall see.

We talked to Phan about my forgetfulness. It can happen from chemo. Chemo brain.....perhaps after18 months, it is setting in. His suggestion...less tv, more brain simulating activity. I'm on it. Lastly thanks for so many birhday wishes...means a whole lot. Phan's office even gave me a card which almost brought tears to my eyes. They are so darn nice and are part of the reason why all this is doable.

Saturday, October 6, 2012

We're happy, life is good

We're happy, life is good. Those were the words from doctor Berenson yesterday.  He is very pleased with how I'm doing. Maintenance is doing the trick. Dr B is funny. I like him a lot. When we first went to him, he was a bit intimidating, very curt and all business. Of course, I was in bad shape at the time and he was searching for something that works. Now though, he's friendly, jokes and is pretty nice. That doesn't mean he sits around and  chats like Dr Phan. But I get Dr B now. He completes me. I like him a lot.

Anyhow, Leslie brought him a few pictures from our wedding and he was super excited, he kept congratulating us, throwing out mazel tovs a couple of times and then he shouted it to others in his office. His reaction gave me a bit more insight into the doctor's mindset. When we first went to him, he said his goal with to have patients "live a complete life" and he wasn't interested in the oft mentioned quality of life. Quality of life was something that bothered me early on. What the fuck is quality of life. It just sounds so deterministic to me. Quality of life...to me sounds like the disease is gong to overtake you, but you'll be pain free and able to go on slow five minute walks once in a while. I hated that term and Dr B's complete life statement really resonated with me. He has a picture in his office of one of his patients on top of Mt Kilimanjaro. That is complete life. He told us he wants to post our wedding picture on his website. He understood that the wedding was not just a wedding, but was also a celebration of how far we've come. That's his goal.....to have patients live and be happy. We're doing that.

On a side note, we told him we had a skeletal survey done. As we sort of expected, he didn't see the point. I have no bone pain, and from the skeletal survey, we wouldn't change my treatment one bit. But when Leslie said it would give me a peace of mind, he understood. Still don't have the results. I'll probably get them Tuesday when I go to Phan's for chemo.  

Tuesday, October 2, 2012

Skeletal survey

Whew..done with the bone survey and bone density tests. The bone survey is xrays of the whole body, head to toe. The density test is a machine that kind of looks like an mri machine. I'm pretty claustrophobic, so I was worried about that one. Being trapped, frightening to say the least.. But the machine isn't fully enclosed and it was a quick process, so no problems. Should have the results in a couple of days.

Got my labs today in preparation for Friday with Berenson.  Everything holding steady after 3 cycles of maintenance. Protein is down a bit, which is good for the kidneys, which are also holding steady. It's all about the best I could ask for.

Had a chat with myself over the past couple of days. Needed to get out of my head and think about other stuff. Have a couple of projects in mind that I want to get going on.

Until later...over and out.

17 Months

Today is 17 months since my diagnosis.  Man, time does fly by and so much of the past year and a half is a blur and seems like it never happened.  Skeletal survey today, Berenson Friday.  Think I'm antsy? You'd be correct, I am.

Monday, October 1, 2012

nerve wracking week ahead

I'm still feeling real good. Worked out 3 days in a row, not tired, everything is great.  Nonetheless, it's nervous time this week.  Tomorrow I'm getting a skeletal survey and bone density test. Myeloma is funny...in some folks it manifests itself in the bones and people break bones. Often that's how the disease is discovered.  With others, including me, there is no bone involvement, but the kidneys are impacted.  Typically, from what I hear, how the diseases initially manifests itself remains constant. 

We did a full skeletal survey when I was first diagnosed (17 fricking months ago) and my bones all looked good.  And now that I'm doing well,  Dr Phan thinks we ought to do some thinks that we'd been putting off. So time for another skeletal survey.  I have no pain, other than an occasional achy back. But that's likely due to my age and having to lug around my fat.  But I'm still nervous about the test.  Finger crossed that all is well. I'm sure it is.

Friday is my monthly Berenson visit. Haven't seen my latest labs, and I'm sure everything is ok and we'll continue on the maintenance regimen.

But that's the thing about this here myeloma.  It's the unknown.  My brain doesn't like the unknown. It's such a gray area for me. Am I fine and can do whatever I want? Or do I need to still watch it and be careful with what I do.  I mean I'm slowly getting back to normal life.....working out, doing my own yard work, working full time, etc, etc.  But the myeloma looms.  I suppose the bi weekly chemo and everyday drug routine and continued doctor's appointments is the reason for that.  And I imagine that will always be the case.  But if that's the case for the next 30 years, I suppose everything is ok.

You're in my Chair

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