Tuesday, December 31, 2013

Bill McHugh and the Empire State Building

My buddy Bill McHugh is training hard in preparation for climbing all 1,576 steps of the Empire State Building in support of the Multiple Myeloma Research Foundation (MMRF).  Bill is an inspired and inspirational myeloma survivior and thriver. If you'd like to help fund the efforts to find a cure for myeloma and show Bill your support, here is a link to his donation page.

http://www.active.com/donate/2014MMRFRunUp/pghlESBRU

And!, if you followed the recent travels of the monkey to Hawaii and Minnesota, Bill has given me and the monkey a shout out on today's training climb.  Thanks Bill and thanks everyone!

And!, Happy New Year!!



Friday, December 27, 2013

Rest in Peace Debbie Viscovich


I might have told this story before. Many many years ago I transferred from San Diego State University to UCLA. I was only 19, but UCLA would be my 3rd college since graduating high school. First was UC San Diego. I lasted two weeks. Roommate issues. Then SDSU, where I lasted two semesters. Honestly it just wasn't challenging. Felt easier than high school. So I transferred to UCLA, where I flunked out of in my first quarter..completely for a lack of trying. I did go back several years later and earned my B.A. and M.A.

When I moved up to L.A. from San Diego, I moved in with my uncle and his roommate, John, who now lives in Tucson and has been  massively supportive of all I do, pre and post myeloma diagnosis. At 19, I began hanging out with folks perhaps 10 years older than me. That's a big age difference for a 19 year old. Through my uncle Jan and John, I developed a whole network of new friends.  Ray, who we visited in Maui over thanksgiving, is one of those.

Another person was Debbie. She was one of Jan's closest friends.  She was part of the group that we hung out with.  She introduced me to Lisa Frazier, several years older than me, but probably the first woman who left me flummoxed, frustrated and smitten with serious puppy love. Lisa drove an old Triumph comfortable, which only added to her mystique. Oh, she had also once dated Ed Marinaro (actor and former Viking running back/Heisman Trophy runner up) and Tony Danza. How I was even in the mix, to this day, remains an unsolved mystery.

Back to Debbie. We're talking about the early to mid 80s. Debbie was the nicest, sweetest, kindest person.  She was level headed.  She'd house sit a friend's house on the Malibu bluffs.  I remember going there one time with Jan and my brother.  The property had horses and I can still see Seth getting tossed by one of those horses. He didn't mention that he hadn't really been on a horse before. And we didn't know that the horses weren't used to being ridden. No damage done though.

Debbie was family. I'm not sure how Jan knew her. But because of their friendship, Debbie embraced me and in many ways watched out for me. Protected me from myself.

Life is funny. Years go by, tight friendships turn into very occasional acquaintances.  Flash forward to 2011. Jan remained friends with Debbie all those years, although they both had created separate lives and didn't see each other more than once or twice a year.  Me? When I was diagnosed in 2011, I hadn't seen or talked to Debbie since the mid 1980s. 25 years perhaps.

When diagnosed though, I was told by a common friend that Debbie had the same thing as me. Multiple myeloma. They thought she had been diagnosed several years earlier and was doing great. I didn't want to talk to anybody when I was diagnosed. But I did want to talk to Debbie.  I called her and it was as if 25 years had not passed. She was as nice and friendly as can be. She told me that she had been diagnosed 5 years early (let's say 2006). She said she was thriving, and simply taking a small pill every few days (Revlimid, which meant nothing to me at the time). Debbie told me that a lot of progress had been made in the fight against myeloma, and that it had become more of a chronic disease that could be managed.You can live a normal life with myeloma, she told me. She really put me at ease, I'll tell you that. Debbie's doctor was Dr Vescio at Cedars Sinai here in Los Angeles. Vescio had trained with Berenson years earlier. And while his approach was a bit different than Dr B's, he also was not 100% sold on the stem cell transplant. Debbie, like me, did have her stem cells harvested and frozen, but she never had a transplant.

About a year and a half ago, Debbie's numbers started to go back up. Her back began to give her problems. It seemed as if her myeloma had re-energized. Vescio apparently wasn't able to get a handle on it, and sent her to Berenson. Leslie and I ran in to Debbie a couple of times at Berenson's office. We went to lunch. She looked great. What cancer? But you could tell her myeloma related back issue was causing her pain.  Her attitude was still awesome. So positive. So caring. We'd check in with each other every so often. But a few months ago, I started not hearing back from Debbie. My calls and texts were not being returned. I heard that she had fallen, broke a bone and might have had a heart issue. I finally did talk her after she had gotten home from a hospital stay and she said everything was fine, nothing to worry about. That was the last I spoke with her. I sensed that she wasn't doing good, but didn't think it was critical. Uncle Jan said he hadn't been able to get in touch with her lately. 

On Christmas day in fact, we mentioned that we needed to see her. Yesterday morning, the day after Christmas, I woke up with a bad feeling. I called Berernson's office and asked if they could tell me what's up with Debbie. They said she had passed away on November 28.  The man at Berenson's office who told me, said he had been good friends with Debbie and was really saddened by her loss. That's the impact she had. She loved everyone and everyone loved her.  Part of me feels like she separated herself from me over the past few months because she didn't  want me to see what myeloma can do. She was still protecting me. She didn't want my spirit to be broken.  To the very end, Debbie was thinking of others.

After hearing the news yesterday, I was in a funk the rest of the day. Sad that I didn't try harder to stay in touch with Debbie. When I'd see her at Berenson's office, she was by herself. She'd drive herself to his office despite the obvious pain in her back.  I hope Debbie wasn't alone when she passed away.

I'm 52. Getting older.  When I recently spent time with Seth in Minnesota, I told him I was ok with dying, if that's what happened, but I just didn't want to suffer and wanted to make sure I embraced life to the fullest.  I said I still planned on fighting and controlling the myeloma for a long time. But hearing Debbie passed away is a sobering reminder of what we're dealing with here. Serious business. I try not to think about it. What's the point?  I do feel like I am getting a little familiar with people dying from cancer and that trips me out a bit. I never would have thought this would be my life at the age of 52. Curious how things turn out.

When I first spoke to Debbie after being diagnosed. we joked about what we might have done in the 80s that led to us both having myeloma, a not too common blood cancer, with an unknown cause. There is some thought that exposure to toxins might lead to myeloma. If so, I can put together a lengthy list of possible toxic things I exposed myself to. We'll never know. Dr Berenson is doing research on whether Ashkenazi Jews are more prone to myeloma than other folks. Debbie and I are both Ashkenazi Jews. We'll never really know. I have my own theories.

The summary of all this is that Debbie put up a great 8 year fight against myeloma. She helped me. She touched countless others. She will be missed.  Rest in peace Debbie.

Saturday, December 21, 2013

Speechless


All week, I've been thinking about last week's trip to Minnesota. Still not sure how to summarize it in this blog.The thoughtfulness and caring shown by the Vikings was absolutely mind blowing and so impactful. I've been on a high all week. I also want to thank the YMCA for their role in making this happening. And I can't forget to mention my brother Seth. He's a superstar.  It was so great getting a chance to spend some quality time with him. He's forever in the great big brother column.

This week was back to reality. Maintenance chemo yesterday. The dex crash should be in full force by tomorrow. Today is my monthly 24 hour urine collection. With the up coming holidays, it was tough getting an appointment with Dr Berenson, so I'm skipping this month. It's a calculated move on my part. I'm assuming my numbers are steady or improved and we're continuing on the same program. Hashtag fingers crossed.

 Dr Phan had his annual open house/ holiday party today. Pictures below. Also,while in Minnesota I met Greg Coleman, former Vikings punter and current radio broadcaster who really went all out, and Daunte Culpepper, former Vikings great quarterback. They signed my doctor's note from Phan, shown below. That puppy will be framed and serve as motivation forever. Check it out.

Me and Seth

Kicking it in the owner's office


Adrian Peterson aka Purple Jesus aka All Day aka one of greatest ever


Signed doctor's note from Greg Coleman and Daunte Culpepper. #StayUp


Nurse Krsytal. The best


Juanita. In full remission!

Dr Phan and his wife Anne

Sunday, December 15, 2013

Blessed

I don't say blessed too often. But after this weekend I am truly blessed. More to come during the week. 

Friday, December 13, 2013

Shave Ice vs Real Ice

I haven't written much in a while. Just hasn't been much to say regarding my myeloma. That's a good thing. As I noted a couple of days ago, my creatinin dropped to a new low. My kidneys are slowing improving AND the myeloma remains in check. 31 months and counting.

Over the past several months, we've added to my diet. In moderation, I'm able to eat things that have significant phosphorus or potassium. For a long time, those things we absolute no nos. They strain the kidneys. Beans, dairy, chocolate, potatoes, bananas, soy, nuts were some of the things I needed to avoid. Now I can have those in small quantities. The drawback with this dietary freedom is that it is holiday time. There is a whole lot of chocolaty, nutty, delicious treats floating around the office. I'm a sucker for these things. Self control on chocolate is not my strongest asset.  Often it's easier to say no absolutely to something as opposed to having a little taste. Once I get that taste look out. So I'm really trying my best at work to avoid or minimize my intake. Yesterday I did allow myself a couple of chocolate cookies. So good. I actually shoveled a handful into my mouth. I've worked real hard to drop the 25 pounds I had gained due to my steroids and lack of activity. I want to keep it off, so I'm telling myself to say no to treats. What do we want? No treats! When do we want it? Never !!

Anyhow, two weeks ago, we were in Maui. They have shave ice in Maui that is awesome. What makes it awesome is the mound of vanilla ice cream that is hidden beneath the flavored ice. Seriously sweet and seriously delicious. Before my kidney improvement, something like this would have been off limits. In Maui, I allowed myself overall freedom from the diet restrictions. I mean, come on, I had to. But what is nice is that my latest blood showed the lower creatinin number. This is post vacation. No damage done by the shave ice (and other stuff).

Today I am flying to Minnesota. I'm meeting my brother, Seth, there. Many many thanks to Seth for this trip. Sunday we're going to a Vikings game. Saturday though we are actually going to the Vikings headquarters for a tour, to watch practice and to meet players. How excited am I? Hugely!!  Seth's connections made this happen. Normally, this is reserved for kids...usually kids with illness. I think it's almost like a make a wish thing. Seth had told his people that his little brother has cancer and is a Vikings fan, really just to help justify a request for game tickets. But this Saturday is a massive bonus. I joke, but I am a little worried that they will think I'm a fraud. I don't look like a little brother with cancer. I don't look like what people expect someone with cancer to look like. I pondered shaving my eye brows and head to look a little more sickly. But I'm going as I am.

It's about ten degrees in Minnesota. The weather is almost the polar opposite of Hawaii weather. It's gonna be cold and icy. I fly this morning. I packed last night. I'm not used to the super cold weather, so it was hard to decide what to take. In all likelihood, I over packed. For instance, do I wear the same thermal top every day or a different one each day. I opted to bring a different one for each day. I am bringing multiple gloves, wool hats, lots of heavy sock. I'm a little deficient on good footwear for cold, snowy, icy weather. I am a little worried about that. Maybe I'll get some boots while there.

Next week I'll be back home. I have chemo next Thursday, which will wrap up another cycle of maintenance. Normally I see Berenson after a cycle wraps up. But with the holidays it might be tough to squeeze in a visit. However, if I do my big monthly labs, I should see continued stability and missing one visit won't be a big deal.

And that's my update. I'm doing good. I had a little cold that I fought through (Leslie had it bad). Time for me to shower and go to the airport. The trip begins.

Wednesday, December 11, 2013

3.37

Latest creatinin. 3.37. Kidneys slowly improving. Myeloma in check. Terrific news for a Weds. 

Tuesday, December 3, 2013

Whoooosh

Back to reality today. Hawaii, Maui more specifically, was awesome. Our friend Ray, who Uncle Jan and I have known for decades, was our host. In fact he was our sugar daddy for 6 days. Not only did we stay at his house (five of us). He took care of everything. He wouldn't let a single one of us pay for a damn thing. Hugely generous. Oh and he cooked for us every day, including Thanksgiving....with help from Jan's kids, Brigitte and Becky.

I/we are definitely gong back ASAP. For me, it was a bit of a life changing trip.  I swam every single day. Ocean and pool. Multiple times per day. Since my diagnosis and my recovery, I can't even describe what water means to me. It's massively powerful. It's massively freeing.  See, can't describe it. The ocean in Hawaii is amazing. Clean. Warm. I'd jump in at 7 AM and it was so damn nice. (note that on the news today I read that  a kayaker off Maui was killed by a shark yesterday) Gulp.

I never once thought about my cancer. Never came up. It was like it didn't exist. That alone is such a nice feeling.  The thing about myeloma, as we all know, is that treatment and maintenance and caution are basically never ending. We're never really free of the myeloma.  I imagine we all (I know I do) play mental games with ourselves to ignore myeloma as best as possible.  Nonetheless, it is always hanging in the background. But for 6 days, that wasn't the case. I was just Matt. Not Matt who has cancer. We smiled and laughed non stop. And that's partly the way to endure this. Laugh. Smile. Enjoy every day moment.

Today it was back to Berenson.  Thursday is chemo and Friday plus this weekend is the wrath of dex.  Berenson's office was packed. A full house. Old and young. Men and women. Cancer is equal opportunity. The visit with Berenson was easy. He said I'm doing great and no change to my regimen (with the exception of a shift in my vitamin d intake). So we talked Maui. How I didn't get a chance to learn to surf (nor snorkel).  Ran out of time. Dr B has surfed. Not a lot, but he has, most recently in Costa Rica.

Leaving the office, two things really hit me. One is that Dr B is a real person. He's not some crazy genius myeloma specialist sitting on a mountain top somewhere. He's real and does real things.And in thinking about all the patients in Dr B's office and all the fellow cancer patients I've met along the way, I was reminded that we all face shit. Life is tough. Life is a bitch. Life throws a lot of crap at us, and we have to deal with it. Some people would say it is god testing us.  But I just think it's life. whoooosh. It flies by. We endure tough times.  But the way to endure and deal with life's taunts, is to enjoy the ride. Yes we need to toughen up for life. But as I said, enjoy Laugh. Smile.  For 6 days, that is all I did and it was the best.  I try to do that back home. But you run into speed bumps. Work, home, people. All that can wipe the good humor away. And then things feel heavy. Very heavy.

For my 45th birthday, I spoke with a rabbi. A reconstructionist Jew.  We sat and talked for nearly 2 hours. I asked him about life from his viewpoint. He said, and I think about this all the time 7 years later, that our purpose in life is to find our purpose in life. In other words, we are always wondering, questioning, searching, learning. It's part of who we are and what keeps us going. So myeloma is just part of my experience. Going too Maui is also part of that experience. Minnesota in two weeks is also part of that. My fuck ups. My successes. My regrets. My proudest moments. These all are helping me get closer to my purpose. I'm not there yet.

I watched a special on HBO today called Sport in America. It was a series of short interviews with people discussing their most memorable sports memory. Regular people, Famous people. All discussing the impact of a certain significant event on so many people. The one defining moment. Most people's defining sports memory is something they watched as a kid. Mark Spitz. John Wooden. Tommy Smith and Jon Carlos. Memory making.  Olympics, Super Bowls, tennis tournaments.

Watching this show, I wondered what other people turn to in order to keep going. Focusing specifically on cancer patients, I have yet to meet someone with  a bad attitude. Every single person has been positive about their circumstances.  Yes, they get down and are scared, but they also stay hopeful.  When I visited Steven last year in the hospital, it was pretty clear that he wasn't going to make it. I saw him the day before he went home to pass away peacefully. His uncle was in the room. He told me that Steven still wanted to fight, that he he still had plans for the future.  But he also told me that Steven had almost accepted his fate. Soon thereafter Steven made the decision to go home. He was the first person at chemo that I met after my diagnosis. He calmed me down. He showed me his port where he did his infusion. He talked to the nurses about movies. Wow. I was expecting a depressing place and depressing people. But nope. All nice friendly people. When I was really sick, I'd go to chemo, wrap myself under a blanket, wrap myself in a ball and try to sleep for the 4 hours of treatment. While half asleep, I'd hear the other patients talking, joking or laughing at whatever movie was playing. And I didn't mind. It was comforting.

And this takes me back to the past several days. We talked, joked and laughed. A lot. And it felt so great. Today driving home from Berenson, I was still happy, still felt great. But I also felt a slight twang of tiredness. I hadn't felt that in a week. But life's weight in my one day back almost changed my energy level. But I talked to myself. I reminded myself of what is important. I took control.  Life is tough, but it's also awesome. So much to cherish, embrace and enjoy. I'm a happy Matt with cancer.

Monday, December 2, 2013

Aloha from Maui

31

December 2. 31 months since May 2, 2011. 31 months since my myeloma diagnosis. Today we're wrapping up our holiday trip to Maui. It's been awesome. Amazing. Feel great. Every single day I've been in the ocean and in the pool. What myeloma?

And this is Ray, our friend and host. Truly a great friend. When I was sick he checked in on me almost every day.  Sitting on the beach is my uncle Jan and his daughter Becky.