Sunday, June 21, 2015

Happy Father's Day

I'm waiting for Gracie to make me breakfast.  Might not happen.  Damn dog.  Anyhow, I'm good.  Started up the latest cycle of maintenance the other day.    Not much else to report.  

Side note: two years ago I bought two seats from the now demolished Metrodome, where the Vikings played.  Seth and I were at the second to last Vikings game in the dome. Leslie's brother made a cool stand for the seats.  Check it out. 

Friday, June 12, 2015


7 minutes of your time is all that is needed to watch this absolutely beautiful short film.

Sunday, June 7, 2015

#Bradstrong forever

rest in peace brad coustan. you and your family have been a beacon for me. 

Saturday, June 6, 2015


Today is a complete do nothing day. I've got to be serious about health and recovery.  Here are some of my supplies. 

Friday, June 5, 2015


Today I returned to the pulmonologist. When we saw him the other day it was me and Leslie. Today it was just me. I went straight from work. His first question wasn't how I was doing? It was, how's my wife. He then told me how wonderful she is, that she is an amazing caregiver and caring person and I was lucky to have her.  All true.
Leslie has been with me throughout my 49 months of myeloma. Taking care of me, talking to doctors, driving me around, giving me shots, encouraging me and on and on.  Being a caregiver is a tough job.  In many ways, I think cancer is tougher and scarier on the caregiver and loved ones than it is on the patient.  
We had a scary week this week. It was a real reminder to me that I'm dealing with something serious and I can't get lax about things.  When I woke up Monday night with trouble breathing, Leslie jumped to action...nursing me back to a level of comfort.  Tuesday, if I had been up to me, I would have stayed home, not seen the doctor and talked/lied my way into having chemo.  Leslie said no to all that. She took me to Phan, took me to a pulmonologist and to the lab.
Long story short. Leslie was right. I had a close call this week. I'm better. Not 100%, but better. I and we are fortunate to have our caregivers and are loved ones.

Thursday, June 4, 2015


Pat Killingsworth, a myeloma advocate, mentor & friend, recently wrote me that uncertainty wears us down. So true. This week was my 49th month. I wrote about that. But this week I was also pretty sick. It's likely just a virus. Our immune systems are comprised, so any cold, virus or whatever has to be handled immediately. Monday night I was coughing, wheezing, achy, and I had trouble breathing. Leslie and I did what we could do to clear me up.(vapor, steam, etc)  For a minute, we considered going to emergency to get me checked in.  Leslie called Phan Tuesday morning and his first suggestion was hospital. F that. I hate the hospital.  Tuesday we saw Phan, a pulmonologist, did blood work, chest xray, and cancelled chemo. We needed to make sure it's not pneumonia or some sort of infection. I have been sweating a lot and at random times....which was one of my early symptons. That worries me a bit.

Monday night, between hacks, I did have thoughts that this might be it. For a minute there I wondered if I'd make it to month 50. Actually I wondered if I'd make it to Friday.  I'm fortunate that I'm doing as well as I am. My first year was real touch and go. But for last two years, I've been on cruise control and living a normal life (putting aside constant fatigue, chemo, blah, blah, blah). But there is that uncertainty that Pat mentions. It's like having a month to month lease. 

It's a wake up slap when a hiccup happens. So far no phone calls regarding my tests.  That's good.  I'm feeling much better. I'm on antibiotics and two different inhalers. I was back at work today and I'm back to normalcy (whatever that is)

Monday, June 1, 2015


Tomorrow is June 2, 49 months since my myeloma diagnosis.  I'm bringing things full circle. 49 was Ed Marinaro, who played for the Vikings from 1972 to 1975. He played in two Super Bowls for the Vikings.
He played college football at Cornell and was runner up in the Heisman Trophy voting in 1971, a huge accomplishment for an Ivy League football player. He led the nation in rushing his junior and season seasons.He played 27 games for Cornell, 1969-1971, and averaged 174.6 rushing yards per game. Marinaro had 10 games in which he exceeded 200 yards; this includes, in 1969, 245 against Rutgers, 281 against Harvard; in 1970, 260 against Lehigh; in 1971, 272 against Columbia, 260 against Colgate. In 1971 his average was 209 a game, an NCAA record that lasted 10 years. That year he led the nation in scoring, rushing and all-purpose running. He was all- America twice and in 1971 won the Maxwell Trophy and was named Player of the Year by Columbus, Cleveland and Washington Touchdown Clubs. I'm gonna say it, he should have won the Heisman Trophy.
 After finishing his career, Ed played the role of Officer Joe Coffey on Hill Street Blues for several years.

Why Ed Marinaro you ask? Full circle, you ask? Way back in the early 80s, I lived with my Uncle Jan and my best friend John in Santa Monica. I was just a young pup. Jan had a friend, Debbie, who became my friend.  I've written about Debbie before. She was the first person to talk to me about myeloma. She was diagnosed a couple of years before me. She told me everything would be ok. I hadn't talked to Debbie for many years when she contacted me back in May, 2011.  Debbie went to Cedars Sinai for her treatment. When her myeloma got tricky, her doctor sent her to Berenson. I'd see her at Dr. B once in a while.  After not seeing her for several weeks and leaving her a number of voice mails, my suspicions were raised.  Shortly thereafter, a friend at Dr. B's office confirmed my worries, that Debbie had passed away. Heartbreaking.

Anyhow, to lighten it up..Debbie had a friend, Lisa Frazier, who was several years older than me. Lisa worked for Charles Schwab, was blond, funny, and drove an old TR7. So cool.  Anyhow, Lisa and I dated for a short while. In her apartment she had a couple of pictures with two celebrities who she had dated. Tony Danza and Ed Marinaro.  As a truck driving 20 year old snot nosed punk, who was on a break from UCLA, these photos were a bit intimidating. This was one of those times in life when I truly felt I was out of my league. 

Even though we stopped dating, we remained friends. I saw Lisa once after I went back to school. But that was it. Debbie told me she talked to Lisa once in a while.   

So that's my 49th month.  Today I have a cold and I'm so fricking pissed about it.  Worked half day so I could come home, sleep and knock that shit out.  Tomorrow is the 15th day of the current chemo cycle. Last time I was sick, Phan made me delay chemo for two weeks. That was not ok with me. And if I have to miss tomorrow because I have a cold, I'll be seriously unhappy.

Other than that, all is good.

LLS Webinar Multiple Myeloma Know Your Treatment Options

June 19, click here to register