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.


Wednesday, November 27, 2013

Latest Labs. High Five!!! (Meant to post this last week)

Alright! Got my lab results yesterday. Got them right before we went to airport. Good results. As opposed to the past few months, I saw a drop in 24 hour protein, a drop in the upep percentage. My blood counts are up. Creatinin still in mid 3s. All good stuff. Happy Thanksgiving! Happy Hanukkah!  

Monday, November 25, 2013

The Wrath of Dex

Update. It's Monday. Dex is kicking my ass. Emotions all over the place. 

Sunday, November 24, 2013

I hate you dexamethasone

I've written before about dex. It's a steroid that most myeloma patients are familiar with. It causes insomnia, anxiety and has an assortment of potential long term side effects. But it is necessary (so they say) to making the treatment of myeloma that much more successful.

I do my maintenance chemo every other Thursday. Some folks take dex in a pill form at home. I get a massive dose during my chemo infusion. I work on Fridays the day after chemo and am highly productive. I'm so used to being low on blood, that I actually welcome the high and the energy I get from dex the day after treatment. I imagine this is how Rob Ford feels when he is high and running the city of Toronto. On top of the world. 

But there is always the dex crash.  And it is never consistent. Sometimes, it is a gentle landing. I'll be a little tired, but that's about it. Occasionally though the crash is big. And that's how it is this weekend. It's a huge crash. I'm emotionally unstable. A little depression, a lot tired and a whole lot of anger. I woke up today, a beautiful Sunday, filled with hate and anger. I walked Gracie and she pulled her usual stubborn shenanigans. Usually her stubbornness on walks is cute and simply adds to her Gracie uniqueness.

Not today. She pissed me off. I wanted a long walk, but no such luck. The neighbor's dog that barks incessantly has me totally on edge. The cars that make a right turn in front of me as I enter the crosswalk really irked me. I flipped a few cars off this morning and I'd say "fucking shit" were the words I've used the most today. And it is only 8:30 in the morning.

Our neighbor runs a carpet cleaning business out of his house. He's got a couple of piece of shit vans that leak tons of oil onto the street. Seeing that this morning was almost the last straw. Pools of oil all over the place. Can't be good having that stuff run into our sewers.

I'm hungry. I want junk food. I want wings. But I'm trying to be healthy, so how the heck do I balance these things?  It's fucking annoying, the crazy balancing act brought on by the myeloma and brought on even more so by the treatment that is supposed to maintain the quality of life.

I've got a good quality of life, but jesus h christ, this emotional roller coaster is kicking my ass. My head feels ready to explode.

I had acupuncture yesterday. Truly a calming and healing process. But a day later, I'd say I've wasted that calmness. Last night I had plans to call people up. Friends who I haven't spoken with in a while. But I had nothing to say. Dex made me nearly mute. Dex left me without a feeling of self worth. How can I talk to people if I have nothing at all to say?  No phone calls were made. Where is my cave to crawl into?

I recently read Slow Getting Up by Nate Jackson. It's a story of one man's NFL experience.  He mentions dex is taken to help recover from injuries.  It reduces inflammation, is my understanding.  I suppose dex for a football player isn't a bad thing. The anger and rage it creates can be good for the aggressive nature of football. Unfortunately dex is not a steroid that helps build muscle.

And this is how I feel today.  I tell myself things are good. I feel good. Living a normal life. We've got a nice Hawaii trip coming up in a couple of days. Minnesota two weeks after that.  All good. But also all so maddening. Today I need to start thinking about all the meds I need to take on my trip. It takes some planning. Footloose and fancy free is generally gone from my vocabulary.

Have I made my point yet? Don't worry folks, I'll get over it, but today is not a good day. Grrrr.

Friday, November 22, 2013

Does Joe Perry of Aerosmith watch the Simpsons?

Today I read a tweet from the actor Hank Azaria.  He's played a whole bunch of characters and is pretty darn funny.  He is also known as the voice of Moe on the Simpsons.  I don't really watch the Simpsons, but I do know that Moe is the bartender at the bar that Homer hangs out at.  Azaria's tweet said that he met Joe Perry of Aerosmith. Joe Perry called him Moe.  It got me wondering if Joe Perry watches the Simpsons. It is possible. Conversely, perhaps Joe Perry has a handler who feeds him facts about whoever he might be meeting.  The show Veep on HBO has Julia Louis Dreyfus playing the vice president. It's hilarious. When she is shaking hands on long greeting lines, she has someone in her ear feeding her little tidbits about each person. She'll then ask each person a question using that tidbit.  It brings a more human element to the handshake.  I wonder if Obama has this sort of person. 

And what an interesting job that would be.  You'd need a good memory. You'd need to be a great researcher. You'd also need to be a fan of the trivia and recognize the uniqueness of each person.  We all have a story. Even seemingly innocuous people have interesting stories.  Horrible people also have humanizing backgrounds.  Sometimes I think that myeloma has turned me into a boring person, with nothing to talk about with other people. I'm not feeling super interesting. But I need to be me. I need to tap into my experiences and my interests and my history to keep things lively.

I'll also say that I love facts. I love researching stuff. I've got a decent memory, although chemo brain sometimes impacts that. But I try to keep the brain active to avoid chemobrain.  In other words, if somebody needs a handler to feed them information about other people, I'm the man.  Call me.

The latest from my friend Brad

Below is a link to Brad's latest post. Worth reading.  His attitude and approach is inspirational. Today he listened to a couple of JFK speeches, and even now, 50 years later plus, he drew inspiration from Kennedy's words. 

http://bradstrong.wordpress.com/2013/11/23/1122-63-jfk/

Collection Day

Monthly 24 hour pee collection day. Brought this to work with me. 

A Description of Myeloma Side Effects

Here is a great post by Stephen Kramer, diagnosed in early 2010. He recently had a short drug vacation and the good/bad effects of myeloma and the drugs he takes, became quite clear.

Thursday, November 21, 2013

Hodge Podge of Nothng

So here's a pet peeve. It happens at work.  It happens a few times a year.  You know how if you're leaving work or on your way to a meeting and you run into a coworker who stops you and says they need to talk to you? And by talk, they mean at that very moment, thereby delaying you   If they need to talk, why didn't they call or email?  Why randomly encounter someone and tell them you need to talk?  If it's a critical issue, this person could have come by my office.

I left work at noon today. It was a chemo day.  I worked half day, went to the gym, and then chemo. It's a tight schedule. I was about to get on the elevator to leave and a woman stops me and says she needs to talk to me. She then went on to over explain an issue. It went on for well over five minutes. What the heck? 

After chemo, we usually go to a nearby deli and get some matzo ball soup and a treat from the bakery. We call in our order just as my treatment ends and by the time we drive over to the deli, the order is ready.  Today was just me at chemo. Leslie was and is out celebrating her birthday. I called Katella Deli as I left Dr Phan's office. By the way, the office administrator told me she is leaving  for another job. That sucks. Good for her, bad for me. She's been there since I started chemo. Super nice, super funny. And she is moving on.  One of the doctor's nurses left about a year ago and I still haven't fully accepted her replacement. I like consistency. I like my team. I understand people need to look out for themselves. But it's a hit to the team. The woman leaving is the friendly voice I hear when I call for my lab results. She is at the front desk when I go to the office. I say "boooooo" to her leaving. But best of luck as well.  Good for her.

 I was on hold with the deli for almost ten minutes. If the Undercover Boss was watching operations, he or she would not be happy with the wait time. Even worse was that it was going to take 30 minutes for my food to be ready. Soup! That is way too long. Normally 10 minutes is the prep time. Cancelled that order. But that also meant I didn't get a treat from the bakery. I'm home now and did find food to eat for dinner.  But we have no cookies. We have no junk food. I'm craving junk.  The dex I get with chemo is kicking in.  It makes me hungry and it makes me crave junk. The anger aspect of steroids also hits quickly. Today it hit as I was driving home, sans soup. Too much traffic. I could feel the anger and ire towards the other drivers building up.  The anger was boiling. But I recognized it for what it was, and was able to make it home without yelling at anyone on the road.

Tonight is insomnia, another effect of dex, a steroid.  Tomorrow I work and I'll be wired all day. Actually I'll be super productive and get a lot done. By Saturday the dex wears off, the chemo drug (velcade) hits and I'll be tuckered out this weekend.

Tomorrow I do my monthly 24 hour urine collection.  Saturday I turn it in and do some blood work.  Remember we're concerned  about the total protein in my urine and the percent of that total that is bad . The last 3 months, the total protein has been edging up. A little worrisome or not worrisome at all. Depends on your attitude. But the percent of the total number that is bad protein has been going down. Thus my numbers are actually a little better now than they were a few months ago.  The current tests have me a little antsy and anxious even though I feel great. We're leaving town on Tuesday, so I'll have to call to get the results. Ah shit, I just remembered that the office is closed Thursday and Friday. My labs results usually come in Wednesday afternoon or Thursday morning. I might have to wait till Dec 2 to get full results.  Damn it, I don't like waiting for results. 

Today I did a Cure Talk conference call.  A myeloma doctor discussed a possible new treatment option. It was pretty damn interesting. Anyhow, I introduced myself and mentioned I am a patient of Dr Berenson. Dr Khan, the speaker, sang the praises of Berenson and said he's on the forefront of myeloma research.  Khan, like Berenson, is not a proponent of stem cell transplants. The treatment option is called monochronal antibodies therapy. I knew little about it. It's been used with success with other cancers and now is going through trials on myeloma. Sounds promising. I plan to talk to Berenson about it when I see him on December 3.

I was going to use this post to delve into questions on the meaning of life and what our purpose is. But I opted not to go in that direction and instead talked about today.

There's the report. I feel great. No complaints.  And that's my story.

Wednesday, November 20, 2013

RIP Hunter, A Real Life Rescue Dog

It's the middle of night. My odd sleeping habits have me awake. I'm on the couch with Gracie next to me. Gracie has been my pup for about 6 years now. I got her from a rescue group, who took her out of a kill shelter on her last day. The shelter found her wandering the streets of a dusty and hot inland Southern California city. During my stays in the hospital she is absolutely what I missed the most. I really don't think of her as a dog. I swear she thinks and processes things as a human would. When I was really sick, I'd try to get short walks in with her. She knew I was struggling. She was always calm, patient and understanding.

While awake tonight I came across this beautiful piece, a eulogy of sorts to the author's rescue dog Hunter. I had to share. It will make you smile and it will make you tear up.

http://gawker.com/the-remarkable-tale-of-hunter-the-real-life-rescue-dog-1467039626

Sunday, November 17, 2013

Piece of Cake

Monday is about here. Work, anxiety, chemo, insomnia, 24 hour collection. That's my week. It's a what? I can't hear you. It's a piece of cake ( while I have created a few cake masterpieces in my day, this is just a photo off the world wide web. Not mine)


Saturday, November 16, 2013

Wow.

Saturday morning. Walking Gracie. Well, she's walking me. Sun is out. Still early so It's quiet. And other than the job anxiety, I feel great. Really super. In your face myeloma. You've been posterized. 

Friday, November 15, 2013

The Week that Was

Friday evening here at the Goldman house. We just ate some dinner and are now watching tv. Gracie is asleep between me and Leslie.  Today I had my interview for the mobility and healthy living program manager job.  It's a job I've been anticipating being available for a year now.  I'm pretty happy with my job, but for me this opportunity is worth making the change.

Anyhow, the interview was great. Very conversational.  I've had some horrible interview in my life, but this was pretty good.  So now I wait to hear the decision. Wait. Ugh. I'm not good with that.  Tonight I've got a fairly decent amount of anxiety.  Hopefully it'll calm down.

Interesting, though, is that I've had to do a lot of waiting over the past two years. Waiting, as in literally waiting in a doctor's office. Waiting, also as in waiting for test results.  I do a lot of blood work. I'm very aware of my numbers, so every couple of weeks I wait for my results. At this point I don't get overly anxious about what my numbers will look like.  Tonight my anxiety about this job is way more than it is when I do lab work.  On one hand it's annoying having this angst. But on the other hand, it's a good thing.  I am anxious about something not myeloma related.  I really didn't think about my myeloma much week. (Other than having to get a procrit shot this morning for my blood count).   

During my interview, myeloma wasn't on my mind.  I discussed the position with every intention of putting all I got into it. I'm more than 30 months into myeloma. But I'm leading a normal life. Just doing my thing.

This week was also the employee of the year lunch at work. I was one of eleven finalists. I thought I had a good chance of winning, but no such luck.  Nonetheless the nomination meant a lot to me, because, as I have mentioned before,  it means I am working and thriving and managing the big C.

And this week, I did get some lab results.. As I mentioned in a recent post, my creatinin is 3.44.. That's the lowest it has been in two and half years. The myeloma is still in check. Bravo.

I made it through the week. I had several big things happening this week. All seemed to go well. But now I have some waiting to do. Yuck.

Wednesday, November 13, 2013

Livestrong and Deadspin

Deadspin is one of my favorite sports blogs.  It's funny, interesting and real topical.  Today they had a post about Livestrong and the great services they provide. Caught me by surprise, but really nicely written.  Give it a look.

http://deadspin.com/the-best-corner-man-for-the-fight-against-cancer-1458195551

Monday, November 11, 2013

3.44

By the slightest of margins, we have a new low for creatinin. 3.44. Kidneys hanging tough. Myeloma at bay. 

Visitor


Took a friend to emergency this morning. Life is a funny thing. Ha. Maybe not so funny. 

Sunday, November 10, 2013

And Football

Done and Done


Stuffing in Progress


The Week Ahead

It's Sunday. The Vikings played on Thursday (winning just their second game of the season), so I've got the NFL red zone channel on. Instead of me flipping channels to find  a decent game to watch, the red zone channel does the work for me. They go to games that have imminent scoring opportunities. It's good stuff. And I'll say this, if there is one thing that makes me want to have a cold beer and betting ticket in hand, it's the red zone channel. I was thinking I'd make a Vegas trip this football season. I'm up for it. But time and funds aren't allowing it.  Well, there is always basketball season. 2014...Vegas here I come.

I'm not complaining though. I've got a Minnesota trip coming up in December with my brother. Vikings game, live and in person.  And in a couple of weeks we're off to Hawaii for Thanksgiving. An old friend lives in Maui and invited us and my uncle Jan to come on out.  Practicality, rationality and guilt had me leaning heavily to not going. We'll hopefully be done with our bathroom construction. Money is tight, but as I said in a recent post, my scare last month has me focused on living life right now. I can't wait around for myeloma to possibly come back.  Always looking over my shoulder is no way to live.  So thanks to my credit card, Maui it is. 

I did blood work yesterday. Just the basics. I should have results tomorrow. Today I am tuckered out. The dex from Thursday's chemo has worn off. The chemo drugs are working. I'm beat, physically and mentally.  I was going to go on a bike ride with Matt Arms today and perhaps even stop at Buffalo Wild Wings (Lemon pepper and Asian zing are my faves).  But I don't have the energy.  And the dex crash and chemo drugs have hit my mood. I've got the blahs today. This past Friday I was on the dex high. Felt great. Productive at work. Truly felt on top of the world. The crash has me feeling a bit overwhelmed and underwhelmed. Overwhelmed by stuff...so much to do and think about. Underwhelmed in that nothing seems that exciting to me. I can be a moody person in general. I've always needed Matt quiet time. This chemo crap simply exacerbates that feeling.  File this under Mental Challenges of Myeloma.

I have a big week ahead of me. Tomorrow is blood work results. Tomorrow is a pot luck at work. I'm bringing stuffing. Usually I like to do a unique stuffing. I love stuffing and it's fun to make different stuff. But just not feeling it, so I'll go the stove top route and simply add a few different ingredients.  Tuesday is my work's employee of the year luncheon. I'm one of 10 finalists. I'm pretty happy with that, but I'd be thrilled to win. For me, it would reflect another blow to myeloma, in that I've overcome it and have kicked some ass. I'm pretty darn happy at my job right about now. But Friday is my interview for the city's bike and healthy living coordinator. It's probably the only job I'd realistically leave my job for. I think in that position I can do some real interesting and beneficial projects, and again, I feel like I'd b sending yet another message to myeloma that I'm still alive and kicking. And that's a big part of the myeloma battle. we need to do stuff that reminds us we're alive. We need things to motivate us. I know that a lot of fellow patients have kids and seeing their kids make their way into adulthood is what motivates folks. I'm actually a bit envious of that.We don't have kids. I don't have that sort of legacy to focus on. I've got Leslie and Gracie, my family, my friends. I've got fellow cancer patients. But I imagine having that blood connection to kids is uniquely special.

The point is, it's a big week ahead of me. It's a big two months ahead of me.  Then it's 2014. Then I re-evaluate again.  I'm feeling like I want to learn something new. Can I turn myself into a top notch sports photographer? Can I become an advertising and branding genius? Can I create a fund raising event to raise funds for myeloma research and support?  Yes to the last question.

Having said all the above, I'm good. Been feeling good. Back to working out after my flu. Good good good. 

Thursday, November 7, 2013

Well?

Today was day 1 of cycle 18 of maintenance. Each cycle is 4 weeks long. 4 times 18 is 72 weeks. 72 weeks of maintenance chemo. Whew wee. Ain't that something?  At the start of every cycle, I have a little sit down with Dr Phan. We discuss my latest lab results and how I'm feeling.  Some of my numbers have been inching up, others have gone down. Put it together and I'm on an even keel from last month.  But even more important is that I feel good. Energy is up. I'm working out. Great, great, great. 

As we know, last month we had a little hiccup, where I was pretty sure the myeloma was picking up steam.  That thought got me thinking about my mortality and if I'm truly living my life. These were thoughts that hit me like a ton of bricks for the first several month after my diagnosis.  But I as I've gotten better, I've fallen back into a normal routine. Routine is good in terms of my treatment. But I'm not sure routine is good in terms of ensuring I live my life.

With last month's scare, I'm back in that overly pensive and overly self-analytical phase about what I'm doing. I'm also in a "Well?" stage. As in well, now what? What am I doing? Or well, what the hell are you going to make of your life. Well, what's my purpose? Well, I've had a good run.

I've said it before and I'll say it again: I need to kick things up a notch and throw caution to the wind.   

The Myeloma Beacon

The Myeloma Beacon is a great source of information on myeloma. It also always provides posts from myeloma patients.  A recent post was an open letter to myeloma from Sean Murray who was diagnosed in 2008. It's good reading.

http://www.myelomabeacon.com/headline/2013/11/05/seans-burgundy-thread-dear-multiple-myeloma/

Sunday, November 3, 2013

Some thoughts from Ava

Ava is the daughter of my buddy Brad, who is coming up on his 1 year cancerversary since his myeloma diagnosis.  Over the past several months, I've shared a couple of posts from Brad, who's got an awesome attitude. The below post was from Ava. It's heartfelt and touching.

http://bradstrong.wordpress.com/some-flava-from-ava/

30

Yesterday was 30 months since my diagnosis. 2.5 years. 4.8% of my life. The day passed without me even thinking about it.  That's a good thing.

Friday, November 1, 2013

Mixed Nuts


Today was my monthly Berenson visit. The first since my recent scare. My monthly lab results were good. We track a bunch of stuff, but the key monthly numbers are total protein in 24 hour urine and the  % of protein that is bad..  My total protein went up. It could mean something. It could mean nothing. But the percent of protein that is bad went down from 56% last month to 42% this month.  Doing the math, the amount of total bad protein that the myeloma is producing is down. That is good. My creatinin is 3.65. A good number for me. Remember that it's the bad protein that beats up and damages my kidneys. My creatinin staying at a good number is a reflection of the myeloma being under control.

Tomorrow we fight another day. And tomorrow is 30 months since my diagnosis. 2.5 years.

Berenson


It's monthly visit time. I'll discuss later. All good. 

Friday, October 25, 2013

Monthly 24 Hour Collection

Today, a Friday and the day after chemo, I am at work. I'm doing my 24 urine collection today, so my container is here at work. I keep it in a cooler and once in a while am asked why I'm taking my lunch into the restroom. Tomorrow I turn the pee in, give some blood, and wait for the results, which I should get by Tuesday or Wednesday next week. I'm not into predicting my monthly lab numbers. But this time I will. I predict my total protein will be 1450 and the upep (or bad protein) will be 48%. Both would be welcome improvements over last month's increases. 

Yesterday's Chemo


Chemobrain

A recent post in the New York Times about chemobrain, written by Susan Gubar

http://well.blogs.nytimes.com/2013/10/24/living-with-cancer-brains-on-chemo/?smid=tw-nytimeshealth&seid=auto&_r=0

Thursday, October 24, 2013

A day in the life of my chemo

Today was the final day of cycle 17 of my maintenance chemo. Maintenance is an infusion of velcade and dexamethasone, with revlimid and medrol taken at home. Every other Thursday afternoon is chemo. I work in the morning, go the gym, go home to eat and then chemo. That's what I do and I stick with it. I need consistency. I want no changes or surprises in my treatment routine. Two Thursday treatments equals one cycle. If you add up my maintenance treatments and all the prior chemo regimens I've done, you get a grand total of a heck of lot of treatments.

My friend Brad recently wrote that he used to have friends come with him to treatment, but now he often goes alone. He works, reads, relaxes. He was diagnosed about 11 months ago. Anyhow, it's the same with me. Leslie used to go with me to every treatment. But now I often go alone. I'll read, watch a movie, sometimes work, sometimes naps. My treatment is short. Roughly two hours.

Mind you, when I was on the heavy duty chemo, I needed Leslie to come with me. With my Treanda chemo (treanda being the drug that got me to partial remission) I'd get a massive dose of benadryl that would waste me. And I do mean waste me. I'd be messed up.  The benadryl was to ensure I didn't have some sort of allergic reaction to the chemo drug. If I were being honest, I'd admit that I actually liked the benadryl. It would put me in this half dream, half awake state where I knew I was in my doctor's office, but I'd have all kinds of activity taking place all around me. It was almost hallucenogenic. Those chemo treatments were longer than my maintenance chemo. The treanda chemo took 4 to 5 hours. I watched a lot of movies over and over during those times.  But by the time chemo ended I needed Leslie to drive me home, because I'd be passed out. I'd crawl into bed and sleep for a few hours, and then would wake up super wired from the dex.

I used to have a port a cath also known simply as a port. It's a catheter like thing under the skin just below my collar bone. It was used for my infusion. A special needle would go into the port. Painless and easy. It shows as a lump just below the collarbone. I had my port for almost two years, but it started to get irritated and painful, as I got more active. I had to be careful with it. We ended up taking it out, just in case it was infected. An infected port can be a problem. It's a nice psychological break being rid of the port. Getting it taken out  made me feel like, hey I'm not doing bad if I don't need a port any more.  I wouldn't be feeling that lump on my chest, which naturally reminded me that I have myeloma.

So now I do my chemo the old fashioned way. Needle in the hand or arm. Also not too big a deal.

Today as I walked in to Dr Phan's office, I had a feeling that it all was so surreal. I have cancer. That alone is crazy. I feel absolutely great and wouldn't know I have cancer except they tell me I do. But the thing with myeloma is you have to do maintenance chemo to keep it under control. Some patients can be drug free for some period of time. But most are on maintenance programs similar to mine.  Eventually the myeloma becomes immune to the maintenance drugs and a new fight might begin.  It can be months, years or even decades before myeloma returns.

Again I say, it seemed so surreal today. I've been doing chemo for nearly two and half years. 30 months since my diagnosis. Really? Wow. That seems insane and it was a lifetime ago that I wasn't doing chemo. How did this become my routine? I wondered if perhaps I'd wake up from this bizarre chemo dream.

I love Dr Phan and I love my nurses.  They're like family. I only see them every other week, so we always do a lot of catching up. Brad also mentioned that he does chemo in his own infusion room. At Phan's and Berenson's offices there is a common area, where infusion chairs line the walls. Phan has 6 chairs and today there were two other patients. While I don't do infusion at Dr B's office I am familiar with his infusion area and he has nearly 20 chairs, usual at 80% capacity. All myeloma patients.  When I was doing the heavy chemo, I'd be in for treatment twice a week, every week.  I got to know a bunch of patients. Phan's a hemotologist, not a myeloma specialist. So at his office, there is a variety of cancers present.

Today I read a bit of Slow Getting Up by Nate Jackson, about his time in the NFL.  I also tweeted and texted, and even got a short nap in.  For a snack I had some animal crackers.

Depending on my hemoglobin counts, I may or may not get a procrit shot to bring that number up.  Today was a procrit day. It's a shot in the belly. Usually it doesn't hurt. Occasionally it does, and oh boy when it hurts, it really hurts. It's maybe a 15 second shot.

Chemo wraps up and I/we always get some food afterward. The dex (steroid) makes me fricking hungry (in addition to making me wired).  Today it was Pollo Loco, one of my favorites. I'm still in this odd dilemma where I don't want to eat any animal. But I haven't stopped yet. Some of it is due to my crazy kidney diet that won't allow me to get sufficient protein through other sources i.e. beans, soy, nuts. 

Today was chicken, cole slaw and rice. I've now eaten, I'm home and I can feel the dex kicking in. Insomnia tonight.

And that concludes my chemo discussion.

Monday, October 21, 2013

3.45!!!!

New low for creatinin. After last month's scare, this is fantastic. Later this week, we'll do chemo followed by 24 hour urine. When I see the protein numbers, we'll be able to say for sure no cancer progression. Hallelujah!

Friday, October 18, 2013

IMF Webcast on Complimentary and Alternative Medicine

On Nov 13, the International Myeloma Foundation (IMF) is hosting a webast on complimentary and alternative medicines in the treatment of myeloma. I highly recommend listening in.  Acupuncture, diet, exercise, meditation, visualization are all important aspects to myeloma survival.

Here is a link to register for the webcast:
http://www.myelomanews.com/2013/10/the-imf-is-offering-webcast-about.html?spref=tw&m=1

The View From Above

Chicago from 40,000 feet in the air.



At work, we use the phrase "from a 30,000 foot level" a lot.  When we're looking at a project from high above (30,000 feet) everything looks great. No problems. But as you get to the ground level or into the weeds, you start seeing the details. Complications and issues start to present themselves.

After my scare a couple of weeks ago, from a 30,000 foot level I am now doing fantastic. I'm riding to work. Working out. Feeling good. Things are good. No appointments this week. No lab work. It's all pretty darn good. From 30,000 feet. When we get into the weeds, it's a little different. Steroids leave my teeth real sensitive to cold, even deep breaths on a cold morning cause some tooth aches. My stomach is constantly in turmoil thanks to the variety of medicines I take. I recently went to a lunch time meeting. After eating I had a presentation to make, and I was so worried that I'd have a little gas sneak out while I was giving the presentation.  Revlimid gives me crazy night time leg cramps. I bruise easily. Mentally, I'm on edge a lot. My house is still a mess from the remodel. We fired our contractor. Work starts up again next week and I can't wait for it to be done. Tired of going to the garage to get my clothes. My car makes goofy noises. I fall asleep at 7:30 almost every night. Noon time naps in my office are becoming fairly commonplace. 20-30 minutes of power napping makes a massive difference for the afternoons.  In general I feel like I'm an 80 year old man.

I think myeloma has fast forwarded me, biologically speaking.

So let's take things back up to the 30,000 foot level. Things look so much better from higher up. I'm alive. The cancer is under control. We'll keep on keeping on.

This is my first update in about a week. I haven't really had much to say. Dr Berenson always says that treating myeloma is a marathon.  So if I'm at mile 10 of the marathon and cruising along at a good pace, there really isn't much to report.

Friday, October 11, 2013

Back to Chemo

Earlier today, I was at Phan's office for chemo. With my relapse scare, we skipped a cycle so it had been a month since my last chemo. Whatever virus I had that gave us the scare, is long gone. I had flushed all chemo toxins out of my system. I' ve been feeling absolutely great. But it's back to routine. And that's good. My blood count was over 10, so no procrit shot plus my temperature was 97.6. Fevers are gone.

The point is that chemo day was the day after my birthday.  The staff had a little surprise for me the picture is below. I've also added a picture of the ice cream cake that Leslie surprised me with.


Sunday, October 6, 2013

Berenson debates no stem cell transplant vs transplant

Read here the debate over stem cell transplant vs no transplant. Berenson is my doctor and I've gone the no transplant route.  But treatment differs for every individual. Myeloma manifests itself in many ways.



Out and About

Saturday, October 5, 2013

Hot Damn!

No cancer progression. That's the good news. All tests came in and nothing points to cancer progression. My 24 total protein number has been inching up for the past few months. It could be mean nothing or it could mean something. But the plan of attack is to keep with my maintenance program and continue to watch everything.  As for my other tests...all good. Bone marrow biopsy shows less than 10% plasma cells. That's awesome. When diagnosed that number was 80%. Berenson said if I didn't have myeloma that the 10% won't even make him blink.  All my infectious disease tests were negative. Thanks goodness. For a fleeting moment we thought that the visit to the Woodstock Farm Sanctuary might have given me some exotic vrius. But no. How unfortunate that would have been. I develop an appreciation/obsession with goats and I catch some crazy disease from them. But all clear. So we'll still see a goat in my yard some day. My creatine is still below 4. My kidneys aren't reflecting increased myeloma cell production.  And my skeletal survey aka full body xrays head to toe showed no lesions, no fractures, no nothing.  All great news.

Remember I was having night sweats, fever and then even day sweats. A couple of weeks ago I was drenched with sweat while sitting in a couple of meetings. Not good. But I haven't had any fevers or sweats in about a week.  My energy is coming back. I'd been pretty fricking tired. I haven't exercised in about 3 weeks. That sucks.

This past week I was pretty sure it was cancer progression. I had mentally prepared myself for it. I was ready to re-engage for the fight. I'm not real good with uncertainty. I'm a bit of  black and white person. You're with me or against me. Anyhow, I got myself to an ok place about cancer progression because then I'd know what's happening and I'd deal with it.  So now I'm in that netherworld that myeoma patients face. Thursday it's back to chemo and I'll try to ride to work this week, so I'll get going in the routine again and all is good.

A friend and fellow patient, Pat, recently relapsed. Pat does a lot of cure talk panels and has written books about myeloma. He's my go to expert. Here's his latest post about his relapse. http://www.myelomabeacon.com/headline/2013/10/03/pats-place-did-testosterone-therapy-contribute-to-my-relapse/

It's interesting that Pat is thinking about what might have caused his relapse. I've thought a lot about what might have caused my myeloma. Who knows.  This past week, while I waited for my test results, I did do a lot of thinking about my role in this here world. I had kind of gotten past that. But it reared its ugly head. What am I doing? Why I am toiling away in an office when I have a life to live? How can I give back more? I look at some of my fellow patients and I think, wow, they're doing so much. They have such positive attitudes. I feel a bit loser like. Anti-warrior if you will. Pity party!!!   I've been walking around all pissed off for a week or so. I hate that. I've got to work on my attitude. I've mentioned before that I tried a support group a couple of times. I hated it. Just a bitch session. I don't need that. I have enough of a bitch session going on in my head every day.  But I will also say, it's awesome having myeloma friends out there. It really helps. There's a mindset involved here and I think they get it. Maybe I need a myeloma buddy near me. Someone I can vent to.  I don't know maybe I need a therapist.  A non-partial listener,

I've also been bugged by this government shutdown. When I thought about cancer returning, I think about what if I lost my job because I couldn't work? What if I lost my insurance? I could be screwed. Thanks to the Affordable Care Act though, insurance companies can't deny me and others because of pre-existing. conditions.  Admittedly I have not read the Act. Has anyone? But what's so wrong with helping out others? Frankly, when I hear people blast Obamacare, I take it as a personal slap in the face. Yes, I'm liberal, but to me health care and the environment are two issues that shouldn't be political. Not to be dramatic but if people are ok with people who are sick not being able to get insurance, then I hope at least you send flowers to our funerals. Ok, that's my vent and political statement.

Tomorrow is a new day. I'm getting my head right. Focused on health and positivity. Oh and keeping my fingers crossed that our contractor picks up the pace. Slow, slow, slow. ARGHHHH

Wednesday, October 2, 2013

29

29 months since diagnosis today. I suppose at some point I'll stop counting. Today's milestone actually almost did pass without notice.
29 was also the number of Rod Carew. One of the best hitters in baseball in the 70s and 80s. He spent most of his career with the Minnesota Twins.(He's in the Hall of Fame, almost hit .400 once or twice, and converted to Judaism).

I've been working all week. I was pretty tired earlier in the week but as we've gone on, I've felt better and felt my energy coming back.  Plus no fevers and sweats in a few days. Perhaps it was a virus.  Tomorrow is Dr Phan and Friday is Dr Berenson. By Friday I'll know what's up. I do a lot of lab work. Typically I want those results ASAP. Particularly with my monthly labs, I really want the results in a hurry.  This week, however, I haven't called to check my results. I'm waiting. We did a whole cement truck load of tests. So instead of getting results piecemeal. I'm waiting to get them all at once.

Earlier this week, Leslie and I were talking about a person we know and about their thoughts on how people should deal with cancer. The first I thought was that this person doesn't know a lot about cancer and cancer patients.  The more I thought about it, I realized I probably had the same thoughts about cancer before I was diagnosed and before I met so many amazing survivors.  Cancer is not at all what I imagined.  Patients function. They do more than function, they thrive. Not everyone obviously, but folks do their darned best to live extra-normal lives.

As I've thought about getting my test results. I've got myself prepared for good or not so good. I can picture my reaction.  If I've been battling a virus, my reaction will likely be "hot damn!". And then I'll get myself ready to restart my fitness and stay ahead of myeloma program. I haven't done anything physical in almost two weeks and I feel like a loose piece of flab.  I'm also prepared to say "aint that a bitch" if it is the myeloma. And then I'll tell myself it's time to tighten the chin strap, put on my big boy pants and kick some ass. I've also been watching my mental state from an external perspective. I've noticed I've had a surge of change over the past couple of weeks. Turns out I am more direct, more honest and less likely to accept bullshit. My own and others bullshit.  In other words and to put it more bluntly, I've noticed that I might have adopted a bit more of a dickish attitude. I can't explain it, but I think for me the anxiety is manifesting in a harsher attitude. Make sense? Maybe not, but it's what I'm feeling.

And this takes me back to what people expect from cancer patients. Sympathy, sad looks are not needed. I'm loaded for bear and even more ready to fight...whether I stick with my current maintenance program or go to something else. Helpless? No. Victim? No.

Tuesday, October 1, 2013

Greener Pastures

There are many many amazing cancer organizations out there. All serve important roles for cancer survivors.  Greener Pastures is one of those organizations.  In their words, their mission is:
Greener Pastures Charitable Foundation, Inc. was formed in March 2011 by Jacqueline Nguyen to raise awareness and funds for cancer research and treatment, as well as to provide support to those affected by cancer.

Greener Pastures endeavors to raise cancer awareness and funds through its website, social media, and local efforts in Southern California, including hosting an annual silent auction and mixer, bone marrow/stem cell donor drives, and various community activities. These events will be supported by longtime friends and family from the Huntington Beach area, where Jacqui spent most of her life. In addition to sponsoring local cancer programs, a portion of the monies generated by its fundraising efforts will be used to help support three organizations: (1) UCLA Stem Cell Transplant Department; (2) LIVESTRONG; and (3) Stand Up To Cancer. While each organization has its own unique theme and purpose, all three support Greener Pastures’ overall goal: to raise awareness and funds for cancer research and treatment, and provide direct support to those affected by cancer.

I was honored and touched and humbled by a recent request to be a Greener Pastures' Warrior of the Month.  Here is a link to my story....
http://www.greenerpastures.org/warriors/matt-goldman

No Update

Still waiting on a host of test results. Patience is called for. Screw patience. 

Friday, September 27, 2013

And now we wait...

In the words of Tom Petty: The waiting is the hardest part.

In the past two days, I've done a full skeletal survey (head to toe x rays), had a bone marrow biopsy, had a chest xray, had a dozen viles of  blood taken (plus 4 bottles) and collected my pee for 24 hours. We're trying to figure out why I've been feeling bad. Could be the flu. Could be the myeloma reactivating. Could be an infection.  We just don't know. We'll know early next week, when all my results come in.  Actually the results of the chest x ray are back already. All clear...so it's not pneumonia.

So for the next few days, it's a waiting game. I just want to know what's going on and if I need to reload for another fight, so be it. Let's do it.  I'm not the most patient person, so for the next few days, we're talking pacing, short fuse, nervous eating. I'm better than I used to be, but I'm still not so great at waiting.

Also frustrating is that I was kicking up my workout program. I was kicking ass. All of that is on hold. Just not feeling up to it. But I do think a lot of it is mental.  The unknown and the worry makes me mope and perhaps feel worse than I really am. So I'm on a break from the gym and riding my bike. Oh, plus my doctors told me to not do anything for a few days. It's important to note that myeloma patients generally have compromised immune systems. The gym can be a germ factory. Dirty muscle heads. So who knows, maybe I caught something at the gym.

Anyhow, we wait. Stay tuned.

Wednesday, September 25, 2013

Let's Spice It Up

I've been on maintenance and cruise control for probably a year and a half. Dex and velcade every other Thursday. Revlimid, every other day for days 1-15 of my cycles. It's been a reliable routine, one that I'm very used to and very ok with. Some of you might have been wondering: Hey Matt, where's the drama? Where's the intrigue? Where's the mystery? The blog had taken an hum drum turn.

Well, for those asking for some meat to chew on in terms of updates, here you go. About 4 weeks ago I started to feel achy. My whole body started to feel tight. It wasn't every day, but there were some mornings where it took a while to get moving. I referenced North Dallas Forty in one post. Then two weeks ago, at Phan's office for chemo, I had a low grade fever. 100 degrees. No big deal. Last week I really to started to feel like crap. After breaking out in a crazy sweat during a work meeting, I went in to see Phan He confidently said I had the flu.  So I slept for the next couple of days and by last weekend I was feeling pretty good. I mentioned we went up north. We went on a walk on the new Bay Bridge and my back really fricking hurt on that walk. Around the shoulder blades. Odd. 

Monday night I had a 102 fever and crazy ass night sweats. Then yesterday at work, in a meeting, I broke out in a raging sweat again. I was soaked. Thank god for undershirts.

So today was Berenson. It's probably not the flu. Could be the myeloma or could be something else, He sent me to an infectious disease doctor ASAP. Here's a picture of all the tubes of blood they took. Oh plus four bottles which aren't visible. The doctor asked if I've been around farm animals. I was at the farm animal sanctuary in Woodstock and got pretty close to a whole bunch of animals, including, yes, goats.

 

 
 
Tomorrow at 9, it's Dr Phan. Chemo is supposed to be tomorrow. Day 15 of maintenance. But that is off. Berenson and Phan talked while we were in Dr B's office. So I might get a bone marrow biopsy in Phan's office and then he'll send me out for a full body scan. I also need to do my 24 hour pee collection tomorrow. Basically, we're doing all the tests we did when I was first diagnosed. Ah, like a trip down memory lane. I'm thinking positive thoughts, but I have a sense what this might be. But we'll see. Tonight I'm eating cereal (Puffins) and having nice conversations with myself.
 
I'll keep everyone posted, but here's the intrigue you may or may not have been asking for.

Monday, September 23, 2013

Miscellaneous Tidbits

We were in Northern California this weekend. My niece, Destiny, was having a baby shower and post wedding celebration. She and Justin, her husband, got married in Costa Rica and we couldn't attend. We stayed in Berkeley where my mom lives. My previous visit was one month before I was diagnosed, me, Leslie and my uncle Jan drove up to Berkeley for my mom's birthday. I was so darn tired that trip. I told several people that I was simply tired because I had quit eating meat and wasn't get enough protein. Boy was I wrong.

It was awesome seeing everyone. Destiny has about 2 and half months to go and looks great. My mom is amazing. Her energy level and drive is pretty darn impressive.

Here's a photo of the family. From left to right,  Uncle Jan, my sister Dana, Justin, Destiny, Leslie, me, my mom Merryll, and Jan's daughter Brigitte.


Now, here's the tidbits:

-Today on Twitter I put up for sale or lease my allegiance to the Vikings. As Adrian Peterson's daughter asked, how can you lose to the Browns? Ridiculous. So I'll listen to any reasonable offer from teams looking for a new fan.  All teams will be considered except the Cowboys (never ever ever-see 1975 playoffs), Saints (cheaters-see bountygate), Falcons (the dirty bird-see 1998) and the Patriots (Bill Belichick).

- We stayed in a hotel in Berkeley. Normal check out is noon and we took at late check out of 1. It got me thinking, didn't hotel check out times used to be like 2 or 3 in the afternoon? When did it change? I blame the shift on Vegas hotels.  My theory is at some point, their research showed that if visitors were required to check out earlier, guest might need to stay an additional night, because meeting the 11 AM check out is not possible. I could be wrong, Thus, Vegas started the earlier check out trend. Just a theory. Also of note, I've a fan of staying in hotels. There are times I think I could live in a hotel.

- I love airports.  Mind you I not a big fan of the actual travel process. But airports are so cool. It's fun checking out different airports in different cities.  If I'm flying on my own, I always try to get there early, so I can have a beer, people watch and guess where other people are going. LAX, Los Angeles's airport, is a fricking dump and embarrassment to the city.  They've talked about renovating for decades. It's still a dump. I'm a land use planner and I've interviewed for planner jobs at a couple of different airports, including LAX, over the years. Never got an the airport job.

-Any myeloma patients do yoga? Does it help with strength, energy, flexibility? Thoughts? I'm getting so inflexible, with bad balance and aches, I'm thinking I need to add yoga to my program.

- Do any patients get light headed due to their anemia? Has anyone fainted after getting up too quick? I haven't, but there are times I stand up and have to slow down and lean over a bit to get some blood into my noggin.

- Any vision issues?  Anyone experience slow adjustment/focus when going from looking at something in the distance to something very near? Does Dex mess with our vision?

-Lastly, do a lot of folks live remotely from their myeloma specialists and travel at some regularly basis to see the specialist? How's that work. I'm fortunate that I live near Dr Phan, my primary oncologist and where I do treatment, and Dr Berenson, who is my specialist. I just got to thinking this weekend, if we lived elsewhere, how would my treatment work. Any insight folks can offer would be appreciated

And that's it. Feeling much much better this week. Still get weird nighttime heat onset. Thursday is chemo and I'll talk to Dr Phan.  Friday will be my big monthly labs, including the 24 urine collection.  These labs will give an accurate story on how the myeloma is doing.

Friday, September 20, 2013

102, 101, what the heck

When I started this blog, my purpose was to keep folks informed with my myeloma. We're almost 29 months into myeloma and the blog.  Myeloma-wise there hasn't been a lot to write about for quite some time.  I've been on cruise control.  The past few days I've been concerned the myeloma was kicking back in.  But here it is, Friday night, and I've feeling pretty good and knocking out whatever had gotten into my system. Nothing to see here. Why write about it? Um......not sure.

To summarize: On Wednesday I felt like crap. I was in a meeting and sweating like a mother fucker, wishing I could lay my head down and take a nap.  I went to see Phan.  He checked me out, looked at my latest labs and told me that it wasn't cancer progression. Instead he said I had the flu.  He has always pushed for me to get flu shots. I have never had one in my life. Call me crazy, but why inject a flu into my system to avoid a flu?  Phan just shakes his head when I say this. His recommendation to beat the flu was rest and lots of fluids. My nurse, Kristel, gave me a pep talk.  They both reminded me that my immune system is already compromised and what immunity I do have is busy fighting cancer. The flu kind of has a free path to jack me up.

Yesterday I took the day off from work. As the day progressed, I felt worse and worser. I was so sleepy, kept getting chills and then sweats, ached, and by last night I had a fever of 102.  Whew wee....I was laying on the couch hoping that Phan was right and it was the flu.  The symptoms were so similar to what I experienced when I was diagnosed. All kinds of question were going through my head last night.  Have I told people I love them? Will the hospital let Gracie visit me in the hospital? When can I see my mom again? Have I ensured that Leslie is taken care of? Is everything in place? Should I go out with a bang?

This morning I woke up feeling better, but still not so great. I called in sick again, with plans to sleep a whole lot.  In the morning I got a terrible cases of the sweats.  My purple Friday Vikings t shirt was soaked.  We took my temperature and it was 101. Ah shit.  I took a shower around noon.  And soon thereafter I started to feel better. I must have sweated out the flu toxins. It was like a switch was flipped. I suddenly had energy. I had pep. I had life to my step.  Well, here it is Friday night and I feel pretty darn good. My throat is scratchy. But no aches, no chills. I'd say Phan was right, it was the flu. Crisis averted.

Speaking of Leslie, she recently went to a taping of the Queen Latifah show. We watched the episode today and Leslie got a lot of face time on camera.  Tonight Leslie got a message from one of my nurses saying she saw Leslie on tv. And this brings me to my point.  It is so fricking amazing how awesome all the medical people are. The nurses are amazing. They are like family. Doctors. Great. Even the lab techs who draw my blood are cool. I do blood work every couple of weeks. I'm on a first name basis with quite of few techs. They always ask how I am doing.

At this rate, I'll be back to normal and feeling great, and I'll be blogging with few real updates.

Wednesday, September 18, 2013

Momentum Magazine

Here is a link to a story in Momentum Magazine about my myeloma and the importance of cycling.

http://momentummag.com/features/gaining-strength-and-community-through-recovery/#sthash.GZDFthLM.dpbs

Apple Fritter?

Originally this post was going to be titled What a Difference a Day Makes.  Monday I was absloutely out of it. I felt horrible, my body ached, my brain wasn't working, and I was starting to get a little worried about the return of the myeloma. Yesterday, Tuesday, I felt so much better. No aches, no body temperature swings, my brain was functioning. I even rode to work. Everything was fine.  But riding home yesterday I was pooped. I made it home and basically went to bed as soon as I walked in the door. Today I woke up feeling achy again. I drove to work. I was sitting in a meeting today, totally unable to get engaged. I was alternating between being cold and being hot & sweaty. I was certain the myeloma was returning. I left work and went to Dr Phan.  He checked me out, checked me numbers and smiled and said I have the flu.  It's not cancer progression. Phew.  Rest and fluids and stay off my bike for a few days.

I'm pretty pleased with myself for being able to be do so well since being diagnosed. My thinking has been clear this whole time. But not so much of late. Tuesday morning, a friend at work asked what's with the picture of the apple fritter. Huh? I had no idea what he was talking about. But I checked my phone and I sent him two text messages Monday afternoon. One was a photo of a delicious apple fritter, followed by a text that said "y, apple fritter".  Absolutely non-sensical. I also went back and looked at some of my work emails from Monday. Holy shit, some also made no sense. I was far out in space.

I've held things together pretty well. But part of my fear about the myeloma returning, was that perhaps, mentally, I had hit the wall. Perhaps I wouldn't be able to function so well moving forward. That's some scary shit.   But if it's the flu, then I'm good. Rest and knock it out.

The challenges of life, sure don't take a break when you're fighting cancer. Shit just keeps on coming. It was suggested to me recently that I start meditating, to help clear the brain and free myself of worry. I'm naturally a worrier, so meditation is a great idea. I need to do something, I can't freak out every time I feel bad.

As I am writing this I am getting nasty leg cramps. It's fairly normal during my revlimid cycles. But damn is it annoying.  Myeloma...I am going to fuck you up.

Friday, September 13, 2013

Exit Strategy, Routine and Random Musings

There was a 1979 movie called North Dallas Forty. It was loosely based on the Dallas Cowboys (my absolutely most hated team ever, by miles).  Nick Nolte played Phil Elliot, an aging wide receiver who will do whatever it takes to keep playing.  A scene early in the movie has him struggling to get out of bed in the morning. He has a career’s worth of aches and pains. Old injuries stiffen up over night and his pain killers from the previous day have worn off.  He manages to get up, takes his meds/painkillers and bounces back.  And then it’s off to practice.

 

Yesterday I felt exactly like this.  My whole freaking body ached. It was a pain getting out of bed.  I took my meds (not painkillers, instead cancer drugs), but they didn’t help and I went to work and I dealt with the aches all day.  

 

Yesterday was day 1 of cycle 17 of maintenance.    Typically a chemo day is work followed by gym followed by chemo followed by insomnia.  Yesterday I did make it to work, but was tired and yes achy (and I am whining a bit now).  Usually enough days away from my previous chemo, I am feeling greatBy the time chemo day arrives, I feel better than I’ve felt in years.  Chemo ruins that, for a good reason.

 

Anyhow, yesterday I didn’t have that great feeling prior to chemo. I tried my best to keep a semblance of my routine and I forced myself to go to the gym.  I made it, but can’t say I was super productive.  


Lately I’ve been getting a small case of night sweats.  Right before I was diagnosed and for a couple of months after diagnosis, I would get horrible night sweats.  I’d be soaked every night. We'd lay a towel underneath me so I wouldn’t drench the bed.  Getting minor sweats now is a bit disconcerting.  Mind you we have been in heat wave and nights are pretty toasty. We have AC so the house is at a decent temperature.

 

Before and for many months after diagnosis I’d also get afternoon chills followed by a 102/103 fever.  Having cancer, I need to be vigilant about controlling fevers.  Fevers can be sign of infection, a real no-no for myeloma patients.  Any time I’d get a high fever, it’d be a trip to the hospital for at least 5 days while they tested me for everything possible.  Those days in the hospital were the absolute worst. My myeloma was getting worse and it took us a while to find a drug mix that worked. I can honestly say there were a few times that I’d lie in the hospital thinking about my exit strategy.  I’d wonder what would be the most painless way to commit suicide.   I never got to the point where I had to seriously consider it. 


 It's been over a year and a half since I’ve had a fever. It’s been lovely.  Yesterday though, at Phan’s office for chemo, I had just over a 100 degree fever.  Very low grade.  Phan wasn’t too bothered by it and was ok with moving ahead with chemo.  


For the first several months of my initial treatment, I’d sleep during chemo. I’d be cold, needed a blanket and always watched a movie.  For the past year or so, I work or read or talk during chemo. I’m warm, don’t need a blanket and typically don’t watch a movie. My treatments take less than 2 hours so there’s not really enough time to watch a whole move.  It was a full house at Phan’s for yesterday’s treatment. All of the infusions chairs were being used. Damn you cancer.  Everyone is so damn nice that I am fortunate to have met them and that’s a plus.  A weird movie was playing called The Little Black Book. It was about 10 years old and starred Brittney Murphy, who got her start in Clueless and  recently died from a drug overdose, I think.  The point is that I watched the whole thing. It wasn’t necessarily good, but I watched it nonetheless.


If we packaged up the aches, tiredness, minor night sweats, low grade fever, sleeping during chemo and watching a movie at chemo and you can guarantee I was a little worried and paranoid.  My numbers are good though.  Creatinin is at a record low. Both Berenson and Phan are very pleased with my numbers and how I’m doing. Seemingly, we have the myeloma under control.  All good, right?  But notice how I added “Seemingly”. I throw in a qualifier.  Underlying that sentence is my thought bubble that says “yes, everything is great, doctors are happy and there is nothing to worry about. However, I’m a little nervous anyway”. Go away thought bubble. Let’s stick with the facts.  Today I feel great. I am high on dex.  I rode in today, as a little test. Leslie wasn’t thrilled given how I felt yesterday.  But I rode in and it was great. My pace was good, no problems catching my breath.

 

The take away of all this? Myeloma is a tricky one.