Monday, December 31, 2012
Saturday, December 29, 2012
Dr B was more chatty than usual. What I learned is that he grew up as a huge Colts fan. As a kid, he saw Johnny Unitas somewhere and got his autograph and since then he's been a Colts fan. I believe Dr B grew up in California. Dr B also loves the San Francisco Giants. His wife for Hanukkah this year gave him an autographed poster of the team. Autographed by several players, who's names I didn't get. How did we get talking about teams that he likes? Well, yesterday was Purple Friday. It's a day that Vikings fan know. You wear purple on the Friday before the weekend of a Viking game to show your team pride and spirit. So I wore a Vikings t shirt and Leslie wore a purple sweater. She appreciates my Vikings obsession, although is quick to point out their ability to lose the games that count.
In the lobby of the medical building that Berenson's offices are in, a doctor in scrubs came up to me to say he's excited for the Vikings game this weekend, that he grew up a Vikings fan here in Southern California. I asked him why he wasn't wearing purple. "It's Purple Friday". He pointed to his scrubs and said he can't, because of the scrubs. I suggested he get purple scrubs. Right? Seems like a simple solution. He was surprised and pleased with that idea and said he'd get some. Scrub variety is familiar to me from all the nurses I see. They all have their own little flair or personality incorporated into their scrubs. A nurse at Memorial, named Carrie, had the coolest scrubs. Leslie suggested the doctor get purple underwear. The doctor laughed and said he was thinking that but figured he'd leave it unsaid.
I've said it before and I'll say it again, it's been a pleasant experience to discover that nurses and doctors are people too. Takes away the fear aspect of going to a doctor's office.
Well, Berenson saw us both in purple and made a comment that being married has changed us and we now dress alike. I explained my Vikings love (reader's digest version). He asked if I'm from Minnesota. I said my soul is but no, I grew up in Southern California. He said he understands given his own love of the Colts. Aha!! Common ground. Dr B is pretty intimidating and authoritative. All in a good way, but overwhelming nonetheless. This brief conversation humanized the good doctor (almost wrote god doctor). I now like him even more. I already love him but now I also like him. He actually shook my hand on the way out. A first. Also of note, in Dr B's lobby, we ran into Debbie again. Debbie is Uncle Jan's friend who also has the myeloma and Berenson is now treating. She just started seeing him given she needs creativity in her treatment and drug mix. Debbie also wore a purple sweater, unknowing of Purple Friday. It just happened. I let her know the significance. Dr B's number one nurse saw us and asked if we had planned our wardrobes. "Nope"
That there is my visit. We continue on the same maintenance program indefinitely. We should talk to the kidney doctor about expanding my diet, although Berenson thinks I should eat whatever I want (minus unhealthy crap like nitrates, aspartame and other fake stuff). Next chemo is Thursday this week coming up. Onward upward and forward.
Friday, December 28, 2012
Thursday, December 27, 2012
Neighbor kids play with their toys on the sidewalk
Smell of a feast seeps out the front door
Gracie, on alert for anything small and fast
A handfull of pills sit calmly in my hand
Waiting to change everything
"I'm a monster" the song says
I'm content sitting and staring
Early on in my journey, it was a mad scramble to understand what was going on and to find things that would improve my health. From the get go, nutrition was a real tricky one. First, the cancer doctors wanted me to eat protein, lots of protein. It's an important tool in dealing with cancer and the effects of chemotherapy. But I had the kidney problem, so I was limited in what I could eat and the kinds of proteins I could eat. Soy, no. Nuts, no. Not too much red meat. And so on and so on. The cancer doctors weren't real keen on even discussing nutrition. Seemed odd. We came to realize that it's just not part of medical training. We saw a couple of different nutritionists and they helped us understand food a bit better. We learned what was bad for the kidneys and what wasn't. We also learned what foods might feed cancer. Sugar, of course, is a real culprit in feeding cancer. Anyhow, we learned a lot and continue to learn. Leslie took control of my diet early on and it's been successful. It sucked at first, but I'm good now. I'm used to the food restrictions. But as I said yesterday, I'd love to be able to break away from meat as my primary protein source and go to healthier alternatives like nuts and soy. If the kidneys keep it up, I might be able to make that switch soon.
The goal is to be lean & mean in 2013. So there is more to learn. Hence today's guest is Brussels Sprouts. I used to hated them. But now I love them, so many ways to make them. I'm not here to give any recipes but I do want to share news about the health aspects of the b.s. Enjoy.
Wednesday, December 26, 2012
Blood count also hanging in there and no shot this week.
Monday, December 24, 2012
Saturday, December 22, 2012
Friday, December 21, 2012
Malcolm Gladwell also wrote Blink, Outliers and What the Dog Saw. I read them all except What the Dog Saw. Good reading, all of them. Helped me career wise and personally.
I read the other day in the UCLA Alumni magazine (I am actually an alumnus of UCLA unlike the University of Minnesota) that in the spring he has a new book coming out called David and Goliath. It's about underdogs and how they utilize their strengths to win. They don't try to be something they are not. He uses sports examples, business examples and personal stories. I haven't even read this and I already love it. Been thinking about a lot. It actually helped me calm down at work. I have certain strengths and certain way of doing things. I shouldn't try to be someone I'm not or change my approach to getting things done. Doing my thing, has helped this week. I feel like I am back in control of my projects and that people understand what I am doing.
Minding my health and working is a balancing act. Busting my ass is a given. But sometimes I need that little motivation or reminder that I'm the doing the best I can.
- My Port-- Port of Matt Goldman of Long Beach if you will. Remember a couple of weeks ago, we thought it might be infected or had shifted out of its proper location. Neither was the case. Good news. But it's more likely that working out and doing weight training where I raise my arms above my shoulders is causing the tube to move around a bit and irritate the surrounding tissue. Hence swelling and redness. Further, people have had the tube pop out from under the skin. Not common but it has happened. Well that's annoying. I've have the energy to work out almost as I used to. Plus, weight bearing exercise is key to keeping bone strength. My bones aren't necessarily impacted by the myeloma. But the massive dose of steroids is wearing down the bones. So the question is how do I do weight bearing exercise on the upper body without irritating the port? Any suggestions? Anyone? Also should I consider taking the port out? That's not really an option for me. The port is such a better way to do infusion. I don't want to start doing infustion with a new needle going in my arm every couple of weeks. I already get weekly blood tests. So I'm left with modifying the workout program. Help please.
- Steroid Side Effects-- There's the effects on the bones that I just mentioned. There is also something called the buffalo hump effect. Between the shoulder blades on the back can get a little enlarged and rounded. Well that's cool. Phan told me this yesterday and said buffalo hump is used in a sort of derogatory way. I like buffalo, but not sure I want to look like one. Leslie called it correctly right then...she knew I'd obsess about it. I'm not exactly obsessing, but I am thinking about it a lot. Semantics perhaps. There's also the puffy face. I already have that. My face is definitely rounding out. The beard kind of covers it, but I'm about ready to shave the beard and mentally have to be ready for the round face. This is a tough one for me, just because as I indicated, I've had a weight issue my whole life. So even though I'm getting into shape and dropping pounds, that fat face stays. Also a side note on my steroids, I'm not even getting steroids that promote muscle building. Conversely, my steroids tend to break down the muscle along with bone. Again a catch 22. I need to work out, but I need a custom cancer workout, if you will.
Work calmed down a bit and I adjusted my attitude, so not feeling overwhelmed. I can only do what I can do.
Thursday, December 20, 2012
Anyhow, last night I had a sore throat, some sniffles and I was pretty tired. I thought I might be coming down with something. "Noooooo!" That's the thought that ran through my head. Getting sick is not a good thing. I've been doing so well, I didn't want some virus to derail me. Plus I do chemo today, and I was worried that if I was sick, that Dr Phan would delay my chemo. But I slept a little extra and now I feel ok. A few sniffles but no sore throat. Whew. Close call.
This week has been an extra long week. It's taking fricking ever for it to end. I am so excited for it to be Saturday and I can kick it. Also excited for Sunday and the Vikings and Adrian Peterson. They might make the playoffs and he might break the single season rushing record.
Wednesday, December 19, 2012
Monday, December 17, 2012
Next week I do the complete monthly blood and urine lab work and then see Berenson Dec. 28.
Last year at this time, I was doing my stem cell harvesting. A truly miserable experience for all kinds of reasons.
The week ahead looks like this: labs this morning, work, chemo Thursday, and Friday we're going to a holiday party at Dr Phan's new office. It's supposed to have a super comfortable infusion area.
That's it. Not much else to report. As I said, I trying to write more, so if anyone has questions or topics for me...feel free to pass them on.
Have a good Monday all.
Saturday, December 15, 2012
Compare today, December 15, to August 2011, and it's a world of difference. I'm in such a better space, it truly is a blessing.
Leslie volunteers with a non-profit here in Long Beach called Catalyst. This morning they had a couple of large shipping containers to move. Uncle Jan's buddy came with his truck and trailer and did the real work, but we helped a little bit. Doing this reminded me of ages ago when I worked for Jan. Such a young, dumb kid I was. Always in a rush and never slowing down to think things through.
It was so nice doing some outside work today and not sitting at a desk. I posted a couple of photos of Leslie at work.
Helping out today also showed me, myself, and I how well I am doing. I'm about normal and have energy and feel good and can do some physical stuff. Compared to the old posts that I read last night, this is awesome. I'm not even in the same spectrum in terms of my health, then and now.
You put all this together and I'm good to go. I've been feeling overwhelmed and frustrated lately. Work especially has been getting to be too much. But I've been letting it be too much and letting it get to me. But now my head is on straight and when I return to work Monday, there's no messing around. It's work but that's all it is. Sure I want to do a good job but I' not going to let it impact how I feel or think. Compared to the past 19 months, dealing with work and work people and work politics ain't nothing. I'm on it.
So much of this thing called life is mental. How you process things, how you look forward, how you manage. When one looks at people and how they handle their lives, one can't help but be motivated and inspired but how people continue to move forward. Yesterday I caught a bit of J.R. Martinez on some daytime talk show. He's the Iraq vet who had his face disfigured by a bomb in Iraq. Since then, he won Dancing with the Stars and is now writing books, and is out motivating people, He said he was given a second chance at life and is going for it. I stood up and clapped, Those were the exact words I needed to hear. My head is on straight and I've regained control.
Friday, December 14, 2012
Hello all. I'm thinking about my last post. Don't worry, I'm doing great, we've got a program that works. I haven't done labs in over a week. Last lab results show a continued kidney improvement trend. That's our marker. Thumbs up.
Nonetheless, lately I have been thinking about who I am. Essentially I've got a fresh opportunity at life and I don't want blow it. At the same, I'm trying to push myself to write more. It's a good outlet and good way to get creative. So the blog is that forum. Bear with me. I'm not the most open person but the writing is my chance to open up.
I've also had a talk with myself. Perhaps I need to vent less. I might be bordering on whining. Nobody wants that. I need to go for it. I need to be positive. #yes!
Not sure if anyone read the story from my previous post. It's a on-going blog written by a leukemia patient for the NY Times. As I progress through my journey, it's interesting to me how there are so many aspects to cancer that people don't think about. The chemo and treatment is just one part of it. There is so much more, it's hard to describe. It's about life, living, appreciating, battling, loving and questioning.
As a former fat kid and someone who worries about their weight a lot, even while undergoing chemo, food is a tricky one for me. I like food. Food is my safe place. But with the kidneys, I'm on a restricted diet. Restricted and restrictive. Things are especially tricky for me this time of year. I'm a chocoholic. Will power and my love of chocolate are on different ends of the spectrum. But I can't eat it. Phosphorus in the chocolate can draw calcium into the kidneys, causing further damage. For that reason alone I'm able to say no. But there is so much of it floating around the office right now. Occasionally, I'll just pick up a piece, perhaps a Hershey's kiss, and smell it. The smell of milk chocolate is heavenly. Heavenly I say!!!
I've got a bunch of dietary restrictions. No ketchup, no salsa, no guacamole, no beans on my combo plate. Blah, blah, blah. Luckily, mustard is ok. And I love mustard. Always have. I like it on french fries, onion rings, chicken sandwiches. Recently I had a conversation with a friend about mustard. This stuck with me. I was thinking of writing a blog using mustard as an metaphor for blood cancers. I hadn't worked it all out, but generally mustard is sort of a forgotten condiment. It's not aways appreciated. Remember those Grey Poupon commercials from years ago. A person in a limo is in need of Grey Poupon. Pump up the image of mustard.
The last couple of months have been interesting. We had Pink October, for breast cancer awareness. Everything was pink, even 5 Hour Energy. Kind of annoying. This was followed by Movember. More annoying. A bunch of dudes in moustaches toasting themselves over their coolness and raising a few dollars for prostate cancer awareness. I'm not saying the causes aren't good. But it seemed rather phony to me. I got to wear jeans at work one day cause I donated five dollars to a breast cancer awareness fund. Come on.
Where's the movement for blood cancers? Where's the love for mustard? Did you know that September is Blood Cancer Awareness month? 20,000 new myeloma cases a year. Thousands and thousands of people die every year from myeloma. Where's the fanfare? Where are the NFL players wearing blood red gloves? As I said in a recent blog, my previous perception of fighting cancer was much different. I had next to zero idea that the fight could go on for years and years. I'm at 19 months. That's nothing, many folks have decades of battling their disease.
And I also mentioned recently, that I was wondering when I stop talking about it. Cancer shouldn't define me, but how do I get away from that definition when every day I'm dealing with it? I'm getting better at ignoring it though. Chemo? Just something I do every couple of weeks. Visiting Dr Phan and the nurses is like visiting family.
When I was diagnosed, I sent an email to a few individuals who I work with. I tried to keep it positive and told people to not believe the hype, if they were to happen to look up multiple myeloma. I knew word would spread and I was ok with that. But I also wanted to keep my diagnosis low key. I don't like a lot of attention. Never have. Mustard also doesn't like the limelight. Mustard leaves it up to ketchup to get the kudos. I wish I could be more out there. I've never even sung karaoke.
Recently I was in urgent care. Nothing related to cancer. But as I sat there among people who had the flu or allergies or a sprained ankle, I felt a little indignant. I'm a cancer patient dammit and shouldn't have to wait two hours to get a shot. I get shots all the time. Move out of my way.
You know, I'm a little on edge most of the time. It's always game time for me. Going to work today? Nope, you're getting an ultrasound because your port might be infected. Walking the dog? Nope, you're a little tired. Lately, I've wondered why I didn't make a bucket list. There are days, when I am convinced the myeloma is going to kick back in. There are days I think that death is just a day away. Not every day mind you. But some days. And it's not the dying or myeloma that really worries me. It's the living. Or not living. I need to lead a meaningful life. I need to be adventurous. I need to speak my mind. I need to ride a bike across the country. I need to wear loud clothes. But in my advancing years, I've become a cautious person. When I was younger I typically flew by the seat of my pants. No regard for the future or how my actions might impact others. I look back with more than a hint of regret, I think it's fair to say. Yet here I am now, fearful of change. Again, don't get me wrong, things right now are great. I'm thriving, I'm married, great wife, great dog, great family and friends. My confidence is at an all time high. Weird how that works. But I'm also feeling a bit like a loser. Get up and do something Matt! I'm paralyzed by fear in a way. Why? What do I have to lose? I have an incurable cancer for crying out loud. I should shout that out as I rob a bank. Not that robbing a bank is on my list. I loved that guy who recently sky dived from 24 miles up in the stratosphere. What balls. What bravery. I used that image when I jumped into a freezing cold pool on our honeymoon. If he can jump into space, I can jump into cold water. But what else am I doing? What else is mustard doing? Let's push the limit together mustard.
Thursday, December 13, 2012
Friday, December 7, 2012
I had a fitful night of sleep last night thanks to my steroid dose yesterday. And today I'll be wired all day.
anyhow, occasionally I get anonymous comments and I'm not sure if anyone wants a response. I apologise for that, blogger doesn't give me a way to respond directly to those anonymous comments. not sure how to resolve that without putting out my email address for the world to see. suggestions?
Thursday, December 6, 2012
Wednesday, December 5, 2012
The TDap was followed by xrays of my port....at a different location than doctor's office. That was a lot of waiting. Thank god for twitter keeping me occupied. Although my phone battery runs down way to quickly. Old phone, old battery.
Then I went home for about an hour and then we went to Phan's for day one of the latest maintenance cycle. Phan already had the xrays and these showed my port to still be in place. But it still aches and was red where the tube dips below the clavicle. So Phan's concern was infection, although I have no symptoms of an infection. But he decided I should get an ultrasound to see if there was some sort of puss filled abscess underneath the skin. Till we had the port figured out, he delayed chemo to Thursday. I hate missing or delaying a single treatment. This is common with most cancer patients. It's a nerve wracking feeling. Leslie and Phan talked me off the ledge and I agreed to wait a couple of days.
So instead of chemo, we walked across the street to community hospital for the ultrasound. We. stopped in to say hi to two nurses who have given me probably twenty transfusions. Linda and Patti are their names and sympathetic nursing is their game. They are so fricking nice, and seeing them reminded me of some of the amazing people I've met on this journey. I haven't had a transfusion in months and months. Anyhow, had the ultrasound. The tech let me watch and we saw no sign of an abscess. That's good. It's possible that since I am working out, the area is getting irritated simply because the tube is moving around while I work out. A radiologist will look at it, talk to Phan, and I should be good to go for Thursday. Getting the ultrasound remined me of the time at memorial hospital when I got a late night ultrasound and they forgot me in a dark room. That was darn scary.
The end result of the day is that everything seems to be fine and we'll get back on schedule Thursday.
Tuesday, December 4, 2012
Sunday, December 2, 2012
I digress. Back to Minnesota. As an adult, there's been a couple of near misses. 1998. 2010. Oh so close to getting back to the super bowl, but not quite. My favorite Vikings ever...Chuck Foreman, Randy Moss, Adrian Peterson, Alan Page and Ed Marinaro. Alan Page is now a Minnesota Supreme Court Judge. I have a photo of me by the name plate on his office door in the state capitol. Ed Marinaro didn't have a stellar career but makes the list given he once dated Lisa Frazier. Who is Lisa Frazier? She was an older woman who I loved when I was about 20 or 21. I did everything I could to get her to fall in love with me, but to no avail. Interesting fact: Lisa Frazier's best friend was Debbie. My uncle's friend who also has myeloma.
Why the Vikings? I think I've nailed it down to 3 things. Number one: They played their very first game on September 17, 1961 ( Beating the Bears) and I was born shortly thereafter, on October 9, 1961. Cosmic link. Number two: October 9th is also Leif Erikson Day. A lesser holiday but a holiday nonetheless. And number three: my brother and dad were L.A. Rams fans and hated the Vikings and as a contrarian I adopted the Vikings.
Anyhow, what everyone doesn't know is that my love for the Vikings translated to a love of the State of Minnesota and all things Minnesota. Shocking really that I don't live there. Ask me my favorite state and I'll proudly state "Minnesota". Been there once in my life.
There's a guy who works for the city of Long Beach who I run into at meetings occasionally. He's a big Vikings fan as well. He's from Ohio.
But let's take a look at my Minnesota experiences. In the 6th grade, I had a teacher, Miss Trafton. Her father was George Trafton, an original member of the NFL Hall of Fame. Until recently I always remembered Miss Trafton as being my 3rd grade teacher. But via facebook and connecting with a couple of kids I grew up with (and Miss Trafton), I learned she was my teacher in the 6th grade. Anyhow, my best friend at the time was David Elzer, and we convinced our parents that if we could raise the money, they'd let us take a trip to Minnesota without the parents provided we had an adult chaperon. We asked Miss Trafton to be our chaperon and she said yes. I had visions of jumping on a hotel bed in Minnesota with David and Miss Trafton. That trip never happened.
Around the age of 11 or 12, I painted a wall of Minnesota in my room. Maps, pictures, etc, etc. My dad and stepmom once brought me dirt from Minnesota. I took it to show and tell at school. I'm not sure what happened to it. But many years later, as an adult, I was friends with a guy who I met at the local YMCA, where I worked out. His name was Wick. I think it was short for Wickman, but I have no idea what his first name was. Wick was a movie buff and was always working on secret screenplays. His real job, though, was working as an accountant at the Hillside Cemetery in West Los Angeles. Hillside Cemetery is home to a whole lot of famous Jews. Wick once put together a map of all the famous folks buried at Hillside and took me on a tour. Michael Landon, Moe from the 3 Stooges, Jack Benny and Bugsy Siegal to name a view. My grandparents as well. Well, turns out Wick was originally from Minnesota and after going home for some holiday or another, he brought me back two new bags of Minnesota Dirt. One from the banks of the Mississippi River and another from outside the Metrodome. Those bags I still have. Also, as a kid, I loved Hubert Humphrey. I so wanted him to beat Richard Nixon in 1968. I was 7 at the time and knew nothing about politics, but I knew that Humphrey was the senator from Minnesota. Favorite politician of all time. Still.
In college, I was a geography major. I met a girl name Cindy who was also a geography major. And from where? Minnesota. She had an identical twin who I never met. I asked Cindy out once or twice, but was always denied.
Around the same time, a friend set me up with her cousin who was visiting from Minnesota. we went out a couple of times, but I think tried too hard and it never worked out. I couldn't help trying too hard. Minnesota, I believed, was my destiny. I had dreams of having a house on one of the 10,000 lakes with one of those party pontoon boats in my back yard. I watched the tv show Coach religiously. He was the fictitious coach of the Minnesota State football team. He had the house on the lake that I wanted.
When I turned 40, I finally went to Minnesota. I went in December because I wanted to experience the cold. My brother met me there, but a couple of days after I got there. A few months before this trip, I had been planning to start law school. I went to the first day of law school orientation and decided it wasn't for me. Problem was I had quit my job and didn't really plan out the quitting law school after one day. I got in my car and started driving east. Ended up in Texas. A bit of a mental snap, you might say. Well, I made my way back to LA and got a job, which I have to this day. I was scheduled to start the new job when I returned from Minnesota. My first night in Minnesota it was snowing. New for me. But I wanted to be real a Minnesotan, so I didn't wear gloves. Who needs em? I stumbled from bar to bar that night in downtown Minneapolis. At the last stop of the night I ran into a group of lawyers who were having their annual christmas party, they were cool dudes and I vowed that night to try law school again, this time in Minnesota, and these guys would give me my first legal internship. I woke up the next day, hungover, and remembering not much except that I had no desire to do the law school thing. Another interesting tidbit: after that night in the snow, my hands have never been the same. They're now sensitive to cold. If I hold a cold drink for very long, my palms get red and itchy...like it's an allergic reaction. I think the gloveless night broke my hands ability to manage cold. Weird, right? When my brother arrived we drove by a bar & grill named Matt's. We took a picture of it. Why we didn't go in, I don't know. The place was actually featured a couple of years ago on the show Diners, Drive ins, and Dives.
Several years ago, I donated to the University of Minnesota. Just a $25 donation. But ever since then I've been on the university's mailing list. I get all kinds of alumni invitations and newsletters. I even took a survey to ensure the alumni had my proper information. I'm in the directory! Only recently did I notice the mail from the university is addressed to Matthew A Goldman. I'm Matthew P Goldman. Oops, some poor guy named Matt Goldman, who is an alumni, is probably wondering why he never hears from the school.
I love 3m. They make scotch tape, post its and are headquartered in Minnesota.
So you see, my ties to Minnesota extend far beyond my love of the Vikings. There is kismet between me and Minnesota. Someday I'll make it back.
And to close this up and in case anyone is wondering, the Vikings lost today. Dammit!!
Saturday, December 1, 2012
The morning walks with Gracie have been hugely important in my recovery. It's my chance to think and ponder and give myself a pep talk. Gracie knows this. She'll often look up at me, as if she is saying something similar. She knows. My journey has so altered the way I think about things and what I belief in. The rainy morning yesterday reminded me of a couple of dreams I had early on. I'd be trying to go somewhere. It'd be dark and rainy. I'd seemingly be in the middle of nowhere, but I wasn't going to give up in getting to my destination. My step dad, Ed, however, would make my travels impossible. He'd throw obstacles and misdirections at me....preventing me for going to where I thought I needed to be. These dreams were so vivid. So real. Of note..Ed passed away several years ago. Thus, I now believe in much more than I did before. I believe Gracie knows what I've gone through. And I believe she knows her importance in my recovery. For this alone, I decide if she doesn't want to walk through the leaves then so be it. She's earned the right.
Leslie and I get in the car to make the 40 miles journey to the doctor. The gas gauge is leaning towards E,so a quick stop for some vehicle fuel is required. Driving to the doctor, the radio plays a series of songs that make up a mystery theme. Leslie guesses the theme is Alfred Hitchcock. I, unfortunately, am unable to think of a theme. Turns out the theme is that all that songs had a snippet of foreign language in them. I'm focused on the wet road and looking at the clock..recognizing that we may be late. Leslie calls the office and says we'll be about 15 minutes late. "No problem" they tell us. "Take your time". This simple message reminds of the amazingly wonderful people we've met.
I've got a problem, my brain thinks too much. I recap and review things constantly, driving myself to the edge on mania. Going over and over again what's been said ,what I've said, what I've done. On the drive to the doctor, I think about an internet radio session I had done the day before with Dr B and other myeloma patients. The doctor did most of the talking. I asked two questions. I worry that when I see the doctor this day, he'll say my questions were stupid and more importantly, he'll say my voice and my delivery were all wrong. Self esteem has not been my strong suit and the myeloma has done nothing to improve it and in fact might have worsened it. Nonetheless, I resolve to face the doctor bravely and confidently....I plan to show not even a hint of thinking I sounded like a idiot on the internet call.
Half way to the doctor's office there is a massive sign on a parking structure promoting Coors Light and USC football. "Every game's a reason to celebrate". The grammar sounds wrong to me. I want it to be wrong. I've asked people and they say it is correct. "Too bad" I think. I am reminded of when I was a youngster. I liked USC football growing up. But now, that's not the case. I'm a UCLA alum. Down with USC and down with USC football. I also think about work and how a recent item I wrote was redlined by my boss. I like to try and get creative with mundane letters and memos. I get shot down every time. I decide that I'm too creative to work in such a bureaucratic office. You can't trap my creativity!!!
Leslie and I arrive at the office. The rain is still coming down. I have a large umbrella that looks like a Minnesota Vikings helmet. There is room for both of us. Coincidences seems to be never ending. Berenson's office is located about a block away from where Ed's sister Marcy lives...near Sunset and Doheny. You'd think I might stop in to see Marcy, but it just hasn't happened yet. Also, curiously, we park on a side street...Phyliss Road. Ed and Marcy's mom's name was Phyliss. Also nearby is the old house of Chuck Barris. Many years ago, I'd been a gopher, a runner, an errand boy for the producer of many a game show...including the gong show. I was maybe 20 years old at the time. I had keys to his house. When he'd be out of town, I might take a date to the house to try and impress the young lady. Foolish foolish Matt. I think about how I squandered the chance to parlay the opportunity into a real job in the entertainment industry. But I was young and only cared about the party. So instead here I am, my creativity stifled in a bureaucracy.
Leslie and I walk into the office building. Construction outside the building has been on going for several months. We look at each other and note that this construction has been taking forever. We chuckle and nod, both knowing that it seems wrong for the construction to take so long. A man in the lobby gives us a plastic bag to cover the wet umbrella. A woman says to her young son; "look at that cool umbrella." The building is in West Hollywood. It serves a number of different purpose, primarily medical offices.We saw Ted Danson once in the parking lot.
In Berenson's lobby we sit and wait. I read a story about Immerman's Angels, a cancer support group. I think about how nervous we were when we first came to this office. Not knowing my fate. My very first visit Berenson, I was greeted by a fellow patient, a friendly older lady, who sensed my fear. She simply smiled and said "you're in the right place". I think last month I saw this woman again. No words were spoken but we smiled at each other and I sent her a mental message letting her know that she was oh so correct. I was in the right place. Now when I go to Berenson, I've already seen my labs, I have a sense, a confidence that I know what he'll say. "doing great, we're not changing a thing". We're taken to a room. Weight, temperature, blood pressure taken. The doctor has a booming voice and you can hear him giving nurses and patients instructions as he makes his way to see me. He enters the room. I'm a little nervous, still wondering if he'll slam my performance the day before. He enters the room and says " hello. so we're doing radio interviews now. I bet they were blown away by bluntness" I say "yes, but it was great, you gave some great information and I think it's good for folks to hear your philosophy". End of discussion. whew! My self worth doesn't take a hit.
We go through the usual examination and questions. I'm doing great. Nothing changes. We have the doctor and nurse look at my port. It's been sore and red. It's where we do my infusion and allows me to not have needles put in my arm. The nurse suggest we get it xrayed to see if it is still in place. "will do" I say.
Time to leave the office. Back in the lobby I see a smiling woman. We say hello. We're linked by myeloma. But she continues to look at me, indicating she knows me. Duh! It's Debbie. An old friend of my uncle's and me. I knew her over 25 years ago, when I was young and only interested in having a good time and not taking advantage of opportunities Debbie also has myeloma. She was diagnosed 5 or 6 years ago. I spoke to her when I first diagnosed. She was the only fellow patient I wanted to talk to at the time. Recently her myeloma started to get active again and her doctor suggested she see Berenson. Debbie had called me a few months back and told me she'd be seeing Berenson. I told her she "was going to the right place" That's a message worth sharing.
Normally after Berenson, Leslie and I will make a pit stop at Canter's deli for lunch before making the trip back to Long Beach. This day is different. We've got to go to the dentist in L.A. The dentist is a friend of mine from UCLA, Ramon. So Leslie and I decide to eat somewhere different before making our way on the slick, glistening streets of L.A. We go to El Coyote. It's a famous, old Mexican restaurant on Beverly Blvd. We'd go there with Ed as a kid. It's near his old business. It's also near a 4 story high brick office building that my dad worked in decades ago. We eat. I order a double order of rice and forgo beans, Beans are not good for my kidneys. I miss beans, but I've adjusted and am used to saying "rice only please"
We eat. The place hasn't changed. We make our way to the dentist. We're late, lunch took longer than expected.We finish up at the dentist and make our way home. Gracie was waiting patiently for us. She greets us at the door and we all smile and nod, acknowledging the road we've been on. This day..yesterday... I think to myself how I've come full circle on so many things. Giant, blaring, neon circles. Full circle. I vow to get focused and to make lists and to not let opportunities pass me by.
Thursday, November 29, 2012
Wednesday, November 28, 2012
People at work often like to say they are looking at a project from the 30,000 foot level. It basically means your looking at something from up high, getting a lay of land, and figuring out the basic goal. At 30,000 feet you aren't "getting into the weeds". You aren't getting into all the fine details of a project at 30,000 feet. A year ago, we were at 30,000 feet with the bridge and oil effort. We knew what had to happen, when it had to happen and that was about it. Now...today...we are in the weeds. Almost every day there is a new issue, a new problem, a different person freaking out about a problem. What we try to remind folks is that having daily issues is a good thing. It means we making progress and really doing the work. All good. Stressful at time? Yes. Moving forward? Yes.
I kind of see my myeloma the same way (at least today I do). A year ago, we were at 30,000 feet. The goal was to keep me alive, to find a drug mix that worked and that was it. Now...today... I feel like I'm experiencing daily problems. Problems I didn't face a year ago. My team came up with a drug and treatment program that works. But now different smaller things keeping arising. My teeth are more sensitive...a result of all the steroids I'm taking. I have osteopenia...weakening of bones, again due to the steroids and the myeloma. I've got bags under my eyes. I was bit by a dog...scary cause of my immune system and scary because it was close to my fistula. (And scary for the my Mom's dog....guilt on my end with that) I'm puffy, fat, old. My memory and ability to think straight is impacted by chemobrain. My eyes are getting worse. I worry about my purpose in life, my legacy. All things that last year would have seemed trivial when we were looking at myeloma from 30,000 feet. Now we're in the weeds, on the ground. New issues pop up. I freak out. I get depressed. Right now I'd love to crawl into a hole and escape from everyone and basically be wasted all the time. I want my brain to shut off. But I suppose that's a good thing. It means I've made progress with getting a handle on my disease. There's going to be hiccups along the way. But I need to deal with them and keep moving forward. I'm generally back to living normal and all that.
I feel like I need to end this post with a "what's my point?" My point is I need to allow myself to get down once in a while. It'll pass. People around me shouldn't worry. I'm still moving forward and treating the myeloma. It's all good. Just like with the bridge. We're moving forward. Things are happening.
Tuesday, November 27, 2012
Monday, November 26, 2012
Wednesday, November 21, 2012
Sunday, November 18, 2012
chemo this tuesday. Did blood work Friday, but did it later in the day, so didn't get any results.
Vikings on bye week. UCLA beat USC and that's that.
Tuesday, November 13, 2012
Monday, November 12, 2012
Saturday, November 10, 2012
Food. Everything I eat I need to think about. We're still nursing the kidneys. But this time of year is tough.. So many treats and sweets and good stuff. Most I can't eat, but sometimes I'd like to say what the fuck, I'm eating what I want.
How I react to stress and people and work and life in general, is all predicated on how my reaction impacts my body and my well being. Sometimes, it'd be nice to just blow a gasket. Might feel good.
I can have a beer now and again..moderation. It doesn't necessarily impact my kidneys, but it does slow my ability to make blood. My bone marrow is constantly stressed from my meds and treatment. Alcohol adds to that stress.
I suppose I'm figuring out a balance on all this. I do chemo every other week. I know the day after chemo, I'll be jacked up on my massive dose of steroids. But this is followed by a day or two of being real tired. This week was a chemo week, and I was particularly tired the past couple of days. Being tired impacts my mental state. I did do blood work yesterday and things still look good. Usually I'll see a bounce in some numbers (in a bad way) the week I do chemo. But this week, no real bounce at all. So next week, when I'm off chemo, my numbers ought to look really good.
So what I am saying? I guess I'm saying that this is a real balancing act. Everything I do, requires thinking and I must make smart decisions. But there are times, I'd like to just turn off the mind and live it up. Don't get me wrong, I feel pretty darn good and we're well into maintenance and things look good. But it kind of hit me this morning (on the way home from gym), that I need to be smart about things, but also need to live life every day.
Thursday, November 8, 2012
here is a link to an upcoming panel discussion I'll be on to discuss MM and stuff. the doctor on this panel is Dr Berenson....my doctor, so should be interesting.
Wednesday, November 7, 2012
Election day was also yesterday. 4 more years! With my health, this election took on serious relevance and importance. With Obama's win, I don't have to worry about some day being uninsured given I have a pre existing condition. That is huge!
Friday, November 2, 2012
Also of note, today is my 18 month anniversary since diagnosis. One and a half years. We've come a long way. Thanks all for the support and love.
Tuesday, October 30, 2012
Monday, October 29, 2012
A little grumpy today...particularly bothered by the financial, physical, mental part of this. Yes, I'm doing great. But fuck, guess I'll be doing maintenance for a long time. Steroids are making me puffy and fat. Saw a side picture of me and my pregnant looking gut was sticking out and I've got a good double chin going. superficial, yes. but bugs me nonetheless. In a couple of weeks, we see the dentist, which is good given I've got a funky tooth and I am finding my teeth are a little sensitive to cold food & drinks. That's new.
On the positive front, Leslie and I are taking a mini honeymoon down to Mexico in a beach house owned by my house. It's a gift from my Mom...we're super excited. Planning to spend a whole lot of time in the water. Pool and ocean. Borrow some fins, etc to do a little bit of snorkeling.
And that's it. fun stuff, eh?
Thursday, October 25, 2012
Wednesday, October 24, 2012
There are meds to take which help bone strength and growth. But a hiccup there is my kidneys, which might not be able to handle some of the bone drugs. Next week is the kidney doctor along with Berenson, so we'll talk about the options. I have no pain and really wouldn't notice the osteopenia. But it's something we need to keep our eyes on and keep in check.
Also important are weight bearing exercise and getting sufficient calcium & vitamin. Curiously, swimming and bike riding are non weight bearing. So more walking and strength training for me. I've been swimming regularly, and will keep doing it, but I just have to recognize that it doesn't replace the weight bearing stuff.
I've also got a tooth that is looking a little funky, probably a result of the chemo. I need to get to the dentist and have it checked out.
Ironic, I've always been young for my age. But definitely starting feel like I am now old for my age. All these little things. So, we keep forging ahead.
Tuesday, October 23, 2012
Monday, October 22, 2012
Here's a recent interview I did with an online health site....
Tuesday, October 16, 2012
RIP Steve Macias
Today I get a procrit shot. It's to help my blood count, which is kept low by the chemo and host of drugs I take. I'm feeling pretty energetic, so I don't think I'm that low, but we'll get the shot anyhow. Last time I did blood work was a week and a half ago and I was low.
I'm pretty much working full time. Only time I miss work is when I have chemo or an appointment. I do my maintenance chemo once every other week. I see Berenson once a month. I take a host of meds at home. I work out. It's all pretty much routine at this point. Which is a good thing for sure.
But this also brings me to the point of this post. Routine. For quite a while there I was just happy to go to work, to walk the dog, to hang out with Leslie and friends. All of that seemed great and such a welcome relief. But as time goes by, I find myself falling into old habits. Bored with work, getting a bit unmotivated. I find myself plotting, scheming, day dreaming about doing something else, about finally doing what I should be doing. But shockingly after all this, I still don't know what it is. Don't get me wrong, I'm super happy with how I am doing and super happy with my life. Things are great. But the mind is funny. Or maybe my mind is funny. I think too much about routines, I think too much about needing a passion. I find it weird, I have this life altering experience, I'm a better person, happier person, more appreciative of everything and everyone around me. But at times it is not enough. There needs to be more. There are times I wish I could shut the old noggin down and just be. But like I've said before, compared to where I was last year at this time......this is way better. Generally I'm at peace with myeloma.
Sunday, October 14, 2012
Wednesday, October 10, 2012
After chemo Leslie and I did go out to eat. Nachos! Something I've been craving but can't have. One splurge day ought to be ok. Nachos were followed by a pedicure. Pretty fricking relaxing. Tonight it's insomnia due to my steroids.
Work has been fun this week. Interviewing bike path consultants. My favorite project is finally moving ahead. Friday night is a trivia bowl event that our communications group is participating in. i was able to convince them that I'm a trivia whiz. I used to be, but my brain is a bit foggy of late....so I'm a little worried that facts will get stuck in my head at the event. But I guess we shall see.
We talked to Phan about my forgetfulness. It can happen from chemo. Chemo brain.....perhaps after18 months, it is setting in. His suggestion...less tv, more brain simulating activity. I'm on it. Lastly thanks for so many birhday wishes...means a whole lot. Phan's office even gave me a card which almost brought tears to my eyes. They are so darn nice and are part of the reason why all this is doable.
Saturday, October 6, 2012
Tuesday, October 2, 2012
Got my labs today in preparation for Friday with Berenson. Everything holding steady after 3 cycles of maintenance. Protein is down a bit, which is good for the kidneys, which are also holding steady. It's all about the best I could ask for.
Had a chat with myself over the past couple of days. Needed to get out of my head and think about other stuff. Have a couple of projects in mind that I want to get going on.
Until later...over and out.
Monday, October 1, 2012
We did a full skeletal survey when I was first diagnosed (17 fricking months ago) and my bones all looked good. And now that I'm doing well, Dr Phan thinks we ought to do some thinks that we'd been putting off. So time for another skeletal survey. I have no pain, other than an occasional achy back. But that's likely due to my age and having to lug around my fat. But I'm still nervous about the test. Finger crossed that all is well. I'm sure it is.
Friday is my monthly Berenson visit. Haven't seen my latest labs, and I'm sure everything is ok and we'll continue on the maintenance regimen.
But that's the thing about this here myeloma. It's the unknown. My brain doesn't like the unknown. It's such a gray area for me. Am I fine and can do whatever I want? Or do I need to still watch it and be careful with what I do. I mean I'm slowly getting back to normal life.....working out, doing my own yard work, working full time, etc, etc. But the myeloma looms. I suppose the bi weekly chemo and everyday drug routine and continued doctor's appointments is the reason for that. And I imagine that will always be the case. But if that's the case for the next 30 years, I suppose everything is ok.
Thursday, September 27, 2012
Next week is Berenson, so this is in preparation for my monthly appointment with him. We usually have the results before we even see him, so I have a good idea of what he'll say. It's hard to believe that I'm coming up on 17 months of dealing with this. Wow, just wow. I feel good, and everyone says I look like I don't have cancer. So that's all good. My perception of cancer has certainly changed. It's a powerful disease, changes everything in your life....but not at all how pictured it. When first diagnosed I had vision of losing 40 pounds and throwing up every morning when I was walking Gracie. That hasn't really happened. I have become more aware of the health care and insurance crisis in this country. So many people work and work and work, simply to maintain their insurance. It's a real balancing act between doing what's right for your healing versus doing what's needed to stay employed and insuranced.
This whole thing has given me a confidence boost though. More comfortable in my own skin and more comfortable with telling the truth. My Libra tendencies to have everything balanced have kind of gone out the window.
Trying to put together a fund raising event that I can propose to the LA Chapter of the LLS, which focuses on all blood cancers. I have a good idea brewing, but gotta work out some of the details before it's ready to be unveiled.
And that's about it, for this brain dump. There's more up in there, but I don't want to delve too deep....on a typical day, I try to tell myself to not think about it and to live a normal happy life. But carrying pee around for 24 hours kind of forces the thought process.
Tuesday, September 25, 2012
Friday, September 21, 2012
Fast forward 5 years and irony of ironies...I have a blood cancer. So in March of 2013, I'm going to do the Big Climb again and raise funds for the LLS. Funny how things work. But this time, doing it as a team....so far I have team commitments from Matt Arms, Destiny (my niece) and Justin (her fiance). Registration isn't until November, but got to get in early, cause the number of registrations is limited.
Good stuff. Here's a link to the big climb website:
Monday, September 17, 2012
Tuesday, September 11, 2012
Kidneys continue to improve. With my creatinin at 4.42, I'm right on the cusp of moving out of kidney failure category and into severely damaged. That's huge. It means they may not be totally trashed after 16 months of chemo and having the myeloma protein beating them up. What's interesting is that after two cycles of maintenance chemo, my protein counts have decreased. That's a good thing and a real pleasant surprise. Going onto maintenance had me nervous, but I guess we're doing this thing right.
Friday more blood work. Fingers crossed for more improvement.
Monday, September 10, 2012
Friday, September 7, 2012
Wednesday, September 5, 2012
Monday, September 3, 2012
Last year, about a month before the diagnosis, I was in vegas and got so sick. Fever, chills, fatigue. As I might have mentioned before, I had a super strong almost vision that I was dying. It was a powerful and scary feeling. Suffice it to say, at that moment I knew something was wrong.
Fast forward 15 months. After lots of chemo, hospital visits, etc, etc, I made it back to vegas this weekend. Felt great, had a good time. Watched a lot of college football, lost most of my bets (Which I attribute to wearing of my vikings visor), and pondered how far I've come. Whats funny, is I went with Matt Arms and both nights there we didn't even make it to 10 pm. Way to enjoy the vegas life, old timers. Still a good trip.
Now home and in the final home stretch to the wedding. I downloaded the blogger app to my phone so updating as I walk Gracie.
Sunday, September 2, 2012
Wednesday, August 29, 2012
Friday, August 24, 2012
Next week, it's back to chemo for a maitenance session. It's very short...not even enough time to watch a whole movie. Last time at Phan's, we borrowed the dvd for Dark Knight so we could finish at home. Next week is also my complete, monthly lab work. Then on Sept 5, it's back to Berenson for the monthly check up.
Wednesday, August 22, 2012
Most recent blood work shows my white & red blood cell counts going up....both are in the almost normal range. Creatinin is at 4.9. High for a normal person, but good for me. NORMAL person.
This brings me to my question. Who am I? Since my diagnosis, I've changed. Everything has changed. Relationships, work, love, my dog, exercise, relaxing.....how I view all these things is forever different. One of things we talk about with Erin, my cancer coach, is that I don't want my identity to be that I am a cancer patient. I want to be Matt. But it's impossible to not see myself forever as a cancer patient. I suppose the fact that I'll always be doing treatment...maintenance or more intense....has something to do with my self view. Myeloma never really goes away. It's always lurking. But also, it's the fact that mentally, myeloma is always there. Everything I do is measured against what it means for my myeloma. And this is what doctors and nurses can't tell you. I wish there was some sort of guide book. I've been to support groups, but those are just bitch sessions more than anything else, and I didn't leave them feeling rejuvenated.
So really I can't avoid seeing myself as a cancer patient. But I can also be Matt. I get Erin's point about not letting the myeloma dictate who I am or what I do. I can be me, but I can also use my life changing experience to be a better me. I.e. do something with what I've learned. Part of me feels,like I need to get more involved in advocacy. I'm lucky, I've got a great team who can help me through this. But what about those who don't. Erin is a cancer survivor. She rarely talks about her cancer yet is able to help guide other patients through the mental. On a side nite, she'll be marrying me and Leslie.
What's my point? I don't know. Just rambling, it's 3 am and I'm awake. I'm torn on the whole Fuck Cancer movement. Yes fuck cancer. But are we giving it too much power by telling it to fuck itself. Prhaps it should be Turn your Head From Cancer.
Sunday, August 19, 2012
The Caner Legal Resource Center has a free webinar on Oct. 16 about Health Insurance and Open Enrollment. Click here to register.