Monday, December 31, 2012

37-34

3.88? What? That's nothing. 37-34 is the important number. That's the Vikings winning score over the Packers yesterday to qualify for the playoffs. Think I' m excited? Asolutely! Adrian Peterson was a beast. That is all.

Saturday, December 29, 2012

Latest Berenson Visit

Uneventful visit. He continues to be happy with how I am doing. He expressed amazement at my kidneys continued recovery. He said he thought for sure by now I'd be on dialysis. Fuck dialysis. Oh and he also said perhaps we could move my visits to once every two months. "Nope" Are you kidding? Do you realize how nervous and anxious I'd be? My god, I'd drive myself crazy if I had to wait for two months.

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

Co-workers

Yay friends at work! Important component of recovery.


A Christmas Morning Poem

A hummingbird samples flowers in the front yard
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
Wondering
Listening
Waiting

Today's Special Guest...Brussels Sprouts



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.

  • For total glucosinolate content, Brussels sprouts are now known to top the list of commonly eaten cruciferous vegetables. Their total glucosinolate content has been shown to be greater than the amount found in mustard greens, turnip greens, cabbage, kale, cauliflower, or broccoli. In Germany, Brussels sprouts account for more glucosinolate intake than any other food except broccoli. Glucosinolates are important phytonutrients for our health because they are the chemical starting points for a variety of cancer-protective substances. All cruciferous vegetables contain glucosinolates and have great health benefits for this reason. But it's recent research that's made us realize how especially valuable Brussels sprouts are in this regard.
  • The cancer protection we get from Brussels sprouts is largely related to four specific glucosinolates found in this cruciferous vegetable: glucoraphanin, glucobrassicin, sinigrin, and gluconasturtiian. Research has shown that Brussels sprouts offer these cancer-preventive components in special combination.
  • Plant phytonutrients found in Brussels sprouts boost the body`s natural defense systems to protect against cancer and other diseases. Brussels sprouts and other cruciferous vegetables disarm cancer causing chemicals and encourage the body`s detoxification enzymes.
  • Evidence in the Netherlands suggests that Brussels sprouts keep the body free from cancer by promoting healthy DNA. DNA is responsible for cell division in the body. When DNA gets damaged, cells may begin to replicate much more rapidly than normal, which can cause a cancerous tumor to begin to form. Several studies reveal that Brussels sprouts have the ability to help protect DNA from damage.
  • Research at Fred Hutchinson Cancer Research Center in Seattle studied 1,000 men. Those who ate three or more servings of cruciferous vegetables each week had a 44% lower prostate cancer risk.
  • Brussels sprouts are cruciferous vegetables—cousins to broccoli, cauliflower and Bok choy, turnips, chard and watercress. Studies link greater consumption of cruciferous vegetables with decreased incidence of several types of cancer. That's because they are a source of isothiocyanates, a class of phytochemicals that help our bodies detoxify undesirable compounds, possibly stopping cancer before it starts.
  • Research published in the International Journal of Cancer shows that Brussels sprouts protect against bladder cancer as well. Brussels sprout`s bladder cancer properties appear to come from their high levels isothiocyanates, which are potent anti-carcinogens. Isothiocyanates travel through the bladder to be excreted, making them particularly powerful against this form of cancer.
  • Sulforaphane is released by Brussels sprouts and has been proven to trigger the liver to produce enzymes that detoxify the body of cancer-causing chemicals They have been shown to inhibit chemically-induced breast cancers in animal studies.
     



    Wednesday, December 26, 2012

    3.88? Yes, 3.88

    Creatinin under 4.  Can't say I even remember the last time this has happened. But it has now. The kidneys slowly trend towards being better. Good job kidneys. Ideally, I'd like kidneys to get back to where I can eat soy and nuts as my protein source and move away from meat.

    Blood count also hanging in there and no shot this week.

    Monday, December 24, 2012

    Happy Holidays!!!

    Christmas Eve at the office. So quiet here, hopefully we'll get to go home a bit early. Did my full labs this morning. I beat the cold and feeling great.   Last year at this time, I was having my stem cells collected.  This is so much better. It's been a great year and I'm so appreciative of everybody and everything. Let's keep it rolling in 2013. Lean and mean in 2013!!!

    Saturday, December 22, 2012

    Slap in the Face Reminder

    Had chemo Thursday. Seems like I hadn't had it in ages. Thus I forgot the aftermath. Day one after chemo, I' m flying on steroids. Energy plus. Day two, I'm super beat. Combined with a cold I'm fighting, running errands this morning, and waiting too long to eat, I am now utterly, freaking tired. This is when I hate this shit. Such a pain in the ass.

    Friday, December 21, 2012

    Great video interview with Kathy Giusti a myeloma survivor and founder of MMRF

    If you have five minutes, this is worth watching. It's an interview with the woman who started the Multiple Myeloma Research Fund. She has MM.

    Livestrong and YMCA

    Apparently Livestrong and the Long Beach YMCA have partnered up on customized exercise programs for cancer survivors. Oh yeah, that's me. Gonna check it out.

    One More

    The Pie in the Sky Wish List Continues

    Malcolm Gladwell

    One of my favorite books ever is The Tipping Point by Malcom Gladwell.  It's about how all it takes are little things for results to change. You or an organization could be so close to its goal and achieving success, but it just takes one little shift to effect the change. Loved that book. Recommend it to everyone.

    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.

    Buffalo Hump goes round the outside.

    Chemo yesterday. Brief meeting with Dr Phan. All is good. He's happy with my progress.  But as I discussed in a previous post, as we get "into the weed" on this myeloma. I have other things to think about.

    • 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.
    And that's it.  Still have some sniffles. Have some steroid induced adrenaline today, but the sniffles are counterbalancing the rage a bit.  Sunday is my monthly 24 hour urine day.  Monday is blood work. Tuesday is Christmas, going to Matt and Rich's house. And Friday the 28th is monthly Berenson visit.

    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

    Bring on the Steroids

    Drip, drip


    Ugly Christmas Sweaters

    These were supposed to be ugly, but I think Leslie made them a little too cute.  You know I'm going to wear mine again.


    Chocolatepalooza

    Holy shit, so much chocolate everywhere today. I'm ok, I have my cup of water instead. Yum.

    Push Back on the Vespa

    whoa, I've been getting some push back from folks on the Vespa.  Folks are suggesting an actual motorcycle. hmmm, something to think about. Not that either one is in the budget right about now. But I can dream.

    Sniffle, sniffle

    Here's a funny thing. Over the past couple of years, I've actually been pretty healthy. No colds, no flus, no nothing.  Cold or flu would be bad, given my typically low immune system.  My doctors wanted me to get a flu shot a couple of months ago, but I said no to that. Just seemed wrong that I'd voluntarily inject myself with a virus.

    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

    Revlimid

    The way my maintenance chemo works is I do infusion once every other week. In chemo vernacular, I do infusion on day 1 and 15 of each cycle.  During the 15 day cycle I also take an oral chemo drug called Revlimid. Revlimid, for me, has one notable side effect. Painful nightime leg & foot cramps. Last night was a Revlimid night and I definitely had some bad leg cramps. I've gotten a little used to it and have learned to not move my legs too much at night. Stationary legs minimizes the cramps. I've had some nights that the pain is huge. Last night was only a medium night. But what this really means is my sleep is interrupted.  Having said that, time for me to get up. Good morning. What a long ass week already.

    Monday, December 17, 2012

    Linus Bike

    Sure I have 3 bikes already and haven't ridden any of them in about a month. But I want this bike. Retro looking with modern components.

    4.06!!!!!!!!!!!

    Very exciting. Lowest creatinin number to date. The trend towards improvement continues.  Hemoglobin is also doing good, so no shot this week, which I get to help with blood count. And white blood cell count is in normal range, we is to be expected given I haven't had chemo in a week and a half. This is all good and all very exciting.  I have chemo Thursday and that'll change those numbers, but it's all good stuff.

    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

    Well folks, after a relaxing weekend, I think I am re-energized, refocused, and ready to be in control. We went to an ugly christmas sweater party, the Vikings won, and I kicked it yesterday. Rested.

    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

    Walk Time


    Get Your Head on Straight

    I think I got it. Took me a few days. But my head is on straight. It's go time. Yesterday we saw a couple of old friends, Ramon & Lorelei. I've known them both since college. Go Bruins! Ramon is also our dentist. Curiously they never knew about the blog. So Ramon started reading it from the beginning and is keeping me updated with where he is at. I think he is up to August 2011. I went back and re-read some of my older posts last night. Wow, just wow. That was an intense and scary time. I'd forgotten about some of things we were doing. And I was reminded of how amazing Leslie was. She fricking too care of me, for sure.

    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.

    Leslie at work


    Leslie trucking


    Morning project


    The Morning Lineup



    Friday, December 14, 2012

    Venting? Whining?

    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!

    Mustard vs A Battle for Cancer Supremacy

    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. 

    Friday, December 7, 2012

    comments

    morning everyone,
    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

    cancer, cancer, cancer


    So here’s the deal. I just had my 19th month anniversary also known as my cancerversary.  It actually passed without much notice or fanfare. No balloons. No cake. Normally I’m pretty aware of the 2nd of each month. But this is getting to be old hat. Although this week was a reminder of the dealio.  My port has been red and irritated. The concern was infection or that it was knocked out of place. Out of place means that it’s not totally connected to a main artery into the heart. Weird to think about. My port has become my security blanket and the prospect of needing to have it removed was something I didn’t like.

    We did some testing and there are no issues. The pain and swelling are gone. So after a two day delay I’m getting my maintenance chemo. I hate the delays. This delay has been two days of nervous energy and anxiety. Apparently this is a common feeling among cancer patients.

    But now really here’s the deal: when do I stop talking about cancer and myeloma? I’m 19 months and counting. I’m feeling good. I’m back to a fairly normal life, with a few little tweaks.  Before I started on this journey if you had asked me about cancer and more specifically cancer treatment. I would have said it sucks, and I would have said people either have a few months of treatment and go into remission or they pass away. I had no idea that treating cancer can go on for years and years or even forever. Sometimes you’ll hear on the news about someone who had been battling cancer for 20 years. I never quite understood how that can be.

    I think I understand now.  I’m going to be dealing with myeloma forever. It’s a chronic thing that has the potential to flare up at some point.  Hopefully if mine does flair up, we’ll be closer to a cure.  But 19 months is getting to be a while. How do I describe where I’m at?  At work, most people assume I’m back to 100% health since I’m there all the time. Friends and family continue to ask me how I’m doing. But frankly, I feel a little weird sometimes answering that question. I assume or worry that folks are tired of hearing about it. Although I don’t really talk about it too much.  But I am also sort of tired of hearing myself.  I block it out pretty well at this point.

    Last year, I was talking to Erin, my cancer coach, about how I was worried I’d always be identified as someone with cancer. I worried that cancer was my new identity. Erin got me to see that cancer is just part of me and is only a small part of what makes me who I am.  Her message was to not let cancer be my identity. That made sense. But right now I wonder if it does make sense.  How do I avoid it? As I’ve said before, everything I do or eat or drink might impact me. I still do chemo. I’m at chemo as I write this. According to Berenson and Phan, I’ll probably always be doing chemo. Myeloma hovers over me.  I’d rather it didn’t and at times I do forget about it completely. And I suppose that is how i should be. People don’t sit around thinking they may get hit by a car or fall off a building or choke on a ham sandwich.  So why should I sit around and wait for my cancer to come back. Tuning out that voice in my head is the trick.

    Wednesday, December 5, 2012

    Port News Part Deux

    Well, yesterday turned into an interesting day. Interesting in that it turned into a bit of reminder of how far we've come over the past 19 months.  Started the day off at my primary care doctor's office to get a tetanus and diptheria shot...TDap. I hadn't been to my primary care in over a year, so I'm told. I have no recollection of being there a year ago. I do recall going there before I was diagnosed. He was testing me for TB and had given me a test injection in the arm. I was waiting in a hall, standing. Waiting for someone to look at my arm. And I remember being so fricking tired just standing there, that I was ready to lie down on the floor to sleep. I had never experienced such tiredness before.

    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

    port news

    hello everyone.  Today is devoted to medical stuff. I have maintenance chemo this afternoon. That means for the next 24-48 hours I'll be high on steroids.  This morning I have to go get a xray of my port. It's less achy but still achy and I'm still a little swollen where the tube dips over the clavicle. Berenson's nurse, Regina, thinks it might have shifted a bit and isn't in the correct location. The x ray will answer that. If it's not? Well I guess it has to be fixed or removed. A lot of folks undergoing chemo don't ever get a port. They'd rather just get repeated pokes in the arm. I've come to appreciate my port. It's a bit of a security blanket. So we'll see what happens.  As  reminder, the port is placed just under the skin on the upper chest and looks like this:

    Sunday, December 2, 2012

    My Minnesota Story

    For those who know me or those who have been following this blog, you probably have a sense of my love for the Minnesota Vikings.  I've had this love since I was a kid and my devotion has never waned. It's as strong as ever.  Note however, that I grew up in Southern California. Beverly Hills more specifically. Suffice it say, I took a lot of ribbing and teasing growing up, as the Vikings lost Super Bowl after Super Bowl.  Four to be exact. There is also the painful 1975 loss to the Dallas Cowboys. To this day I absolutely loathe the Cowboys, Roger Staubach and Drew Pearson. F them! I watched that game from an old fashioned barber's chair in the living room of my Aunt Barri and Uncle Bob's house.  Note about Aunt Barri....she has a brother named Jan. My uncle Jan. My mom's name, their oldest sister, is Merryll but is named after Robert Merrill, an old opera singer.

    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

    Rainy Day Visit to Doctor B

    It was a cool,wet morning, yesterday morning was. Steady rain overnight took most of the leaves off  the trees. Now on the sidewalk, the leaves indicated that the season had truly changed. On her morning walk, Gracie gingerly tried to avoid stepping on the leafs. I like kicking the leaves, but for Gracie they're a mystery. At times, on the walk. there are so many leaves that Gracie refuses to walk through them. She''d stop and try her best to hold her ground, while I tried to pull her to keep on going. It's a battle at times. Stubborn vs stubborn.

    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.

    The End

    Thursday, November 29, 2012

    Cure Talk Panel Discussion with Dr B

    For anyone interested in hearing Dr Berenson discuss his methods and philosophy, this a great listen actually. I had the chance to ask him a couple of questions.  And I'll be seeing him tomorrow. 

    Listen Here to Doctor Berenson

    Wednesday, November 28, 2012

    On the positive side.....

    Got results of monthly labs. Everything continues to hold steady.  I'm imagine Dr B will keep me on same program.

    From 30,000 feet to Ground Level

    I'm part of a team working on a massive bridge project here at the Port.  One of my responsibilities is to facilitate the relocation of active and abandoned oil wells that are in the footprint of the new bridge. It's actually pretty darn interesting.  But this morning, driving in, I realized there is a sort of comparison between this bridge planning effort and my medical issues. 

    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

    more legacy

    Add "sweat profusely" to who I am. I've always been a sweater. The Goldmans have always been sweaters. Definitely a family trait. But some of meds have really kicked that up a notch.  A leisurely lunch time walk in cool air has me sweating like a son of a gun.

    Monday, November 26, 2012

    Legacy

    Does everyone have a legacy?  What are we leaving behind? What is our impact while we're here? Deep questions, yes. Right now, mine feels like the following....old, fat, cancer, bitter.  Not too impressive.

    Wednesday, November 21, 2012

    Jacked on dexamethasone today

    Got my bi-weekly chemo and steroids yesterday and I'm fired up today. Really is a boost of energy. It's not the muscle building steroid, but does get me wired for a couple of days....which isn't so bad.

    Cure Talk Panel on Nov 29.

    Don't forget to register for the Thursday Nov 29 Cure Talk Myeloma Panel with Doc Berenson and yours truly on the panel.  3 PM west coast time. Here's the link...
    http://trialx.com/curetalk/panels/myeloma-cure-panel-with-dr-james-berenson-on-29-november-2012-6pm-est/

    Sunday, November 18, 2012

    zzzzzzzzzzzzzz

    Sunday here. Not much to report. Went to dentist. All good. My tooth that  I thought was funky is fine. No bone loss in the toothers.

    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.

    more later

    Monday, November 12, 2012

    Vikings 6-4!!!

    So far, a pretty nice season. And Adrian Peterson is back to being Purple Jesus.

    Saturday, November 10, 2012

    This or That

    This or that? This seems to be the question with cancer, myeloma or any serious illness. Do I do this or do I do that.  Every action I take feels like it needs to have a purpose. But then again, why I can't just say fuck it and go out in a blaze of glory. For instance...I've been working out fairly regularly. I'd been swimming. Then we did a bone scan and my bones are generally ok, they're starting to reflect the impact of the myeloma and the steroids.  I have no pain. So that's all good. But because of this hint of damage, I've adjusted my workout. No more swimming. Only weight bearing exercise, which helps strengthen the bones.

    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

    The Big Climb

    Team Goldman is doing the Big Climb in March in Seattle.  It's in support of the Leukemia and Lymphoma Society, which addresses all blood cancers. Including Multiple Myeloma.  Here's a link to my page for this effort...

    http://www.llswa.org/site/TR/Events/BigClimb?px=1559651&pg=personal&fr_id=1250

    Cure Talk

    hello all,

    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. 

    http://trialx.com/curetalk/panels/myeloma-cure-panel-with-dr-james-berenson-on-29-november-2012-6pm-est/

    Matt

    Wednesday, November 7, 2012

    4.1

    Creatinin 4.1 Another new low kidney. Gfr of 16.....means kidneys out of failure range and into severely damaged. Another milestone. Of course it's all about trends. So more blood work Friday and we'll see what's what. I had maintenance chemo yesterday and that typically influences numbers. 

    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

    DC Visitors

    No, not Barack and Michelle. Although that would have been cool. But better yet...Erich and Jessie. We got to spend the afternoon with them, which was awesome. Very very cool people.

    18 Months/1.5 Years

    Yesterday saw the kidney doctor and Berenson. Everything is cool.  Kidneys slowly improving...minimizing the myeloma protein will help.  Berenson happy with everything. Maintenance continues.  In terms of my bones, the kidney doctor suggested something, but Berenson shot it down. Something about the bone drug's interaction with myeloma and shortened life expectancy. Say no more. You had me at life expectancy. I have zero pain, bones aren't too bad. So it's weight bearing exercise, calcium and vitamin d.  I continue to feel great, so let's keep it going.

    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

    Numbers

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

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

    Monday, October 29, 2012

    Monday

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

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

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

    And that's it. fun stuff, eh?

    Thursday, October 25, 2012

    Go Vikings!!!

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

    Wednesday, October 24, 2012

    Age is creeping around the corner

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

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

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

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

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

    Tuesday, October 23, 2012

    Tuesday, October 16, 2012

    holy shit

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

    RIP Steve Macias

    routine ho hum

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

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

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

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

    Sunday, October 14, 2012

    Felix Baumgartner

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

    Wednesday, October 10, 2012

    51

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

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

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

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

    Saturday, October 6, 2012

    We're happy, life is good

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

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

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



    Tuesday, October 2, 2012

    Skeletal survey

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

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

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

    Until later...over and out.

    17 Months

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

    Monday, October 1, 2012

    nerve wracking week ahead

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

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

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

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

    Thursday, September 27, 2012

    brain dump

    Today is my monthly major lab day, i.e. 24 hour  pee collection. It's pretty humbling bringing a cooler to work with my pee in it.  Sample questions from co-workers:  "what'd you bring us to eat' "Can I hae some" "why are you taking your lunch into the bathroom"  My standard response is "I don't think you want any of this"

    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

    Long Haul

    Back to chemo today. Maintenance. Everything is still looking good. But still it was such a slap in the face reminder. In talking to Dr Phan, we talked about needing to do a bone scan..just to see how things are going. I'm not having any bone pain, but we gotta be diligent. He also said that alcohol is a bone marrow suppressor, meaning it might impact my ability to make red blood cells. I am a little low right now. So I'm back to the very occasional one beer. I guess that's ok, but it also takes away my little slice of normalcy. Fucking myeloma sure does disrupt everything. Like I said, I'm doing great and feel great, but damn, once in a while I'm throwing myself a pity party.

    Friday, September 21, 2012

    The Big Climb in Seattle

    Back in my younger days, I had a list called the 45 by 45 list. Kind of like a bucket list....but I want to be clear that my list pre-dated the Bucket List movie.  It was a list of 45 things I wanted to accomplish between my 44th and 45th birthday.  One thing was to do a building climb.  I did the Big Climb in Seattle. It was awesome. And it was to raise funds for the Leukemia and Lymphoma Society.....which is actually an organization that provides support and education for all blood cancers, including multiple myeloma. 

    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:

    https://secure3.convio.net/llswa/site/SPageServer?pagename=BC_homepage

    4.33!! hells to the yes

    Creatinin today is 4.33. Woohoooo!  Yet another record low.  There's also a calculated number that is then used to identify kidney failure. It's the GFR and if it's less than 15, kidneys are in failure. Today my GFR is right at 15, which means I am inching out of failure range. Very good way to start the weekend!

    Marijuana and Cancer

    I wish Obama would be a little more progressive with his position on med pot.  Interesting stuff.....

    http://www.sfgate.com/health/article/Pot-compound-seen-as-tool-against-cancer-3875562.php#photo-3469070

    Myeloma Cure Panel

    yo yo yo....there's an internet radio show that does a monthly show with a myeloma doctor and a panel of patients with questions. the next one is tuesday september 25 at 1:30 (west coast time).  This month I'm on the panel. So if you have an hour and are interested in hearing the perspective of other patients and other doctors, here's the link......

    http://trialx.com/curetalk/2012/09/myeloma-cure-panel-on-25th-september-2012-430-pm-hurry-and-register/

    Friday

    Dang, super fast week. Doing blood work this morning. Results later today. More detailed update this weekend.

    Tuesday, September 11, 2012

    Today

    Today: bike planning conference, work, two meetings, chemo, walked gracie, workout, now tv. Not bad. Pretty darn normal.

    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

    4.42

    Hells to the yes! Easily the best creatinin number yet. Need to see a trend, etc, etc. But I'm super excited by this number. Come on kidneys! Keep on coming back!

    Friday, September 7, 2012

    Yo yo yo!

    Good visit with Dr B. Maintenance doing its trick and we keep the same program.

    Wednesday, September 5, 2012

    Whoops.

    September 2 passed without notice.  That's a good thing. It was my 16 month anniversary from my diagnosis. Didn't realize it until today. That's a very good thing.

    Monday, September 3, 2012

    Vegas

    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

    Sad Day

    Just got news today, that my friend Steve from Dr Phans office passed away today. He'd been in the hospital the past week but was able to go home last night, where has passed away. May he rest in peace. He was a real fighter.

    Wednesday, August 29, 2012

    SUP

    Think I'll be going stand up paddle boarding again on Sept 8. Might try the ocean this time. Which means, I'll be getting wet.

    Brainstorm

    Treatment yesterday, so insomnia last night. Rage isn't too bad today. But at 3 am I had a brainstorm reagrding my future advoacy work. Stay tuned.

    Friday, August 24, 2012

    F Yeah, It's Friday

    Friday.  I've worked all day, every day this whole week. That's yet another first since starting the myeloma challenge 16 months ago.  I'm feeling pretty good. Blood count is up, energy is up, and so on and so on.   Via twitter (perhaps the greatest thing ever) I've been "connecting" with other myeloma patients from all over the place. It's interesting to see how other people are dealing with the treatment and mental challenges. What's most interesting, given my current mental state (very happy on the scale of happiness, but trying to figure out the future weighed against myeloma), is that other people experience the same sort of feelings and have the same questions.  I suppose it's this way for anyone with a serious chronic illness. You have to do your very best in blocking out the "what ifs" and negative thoughts. There are times that I'd like to crawl into a cave and isolate myself from everyone. But that's not the way to do this. So as of right now, I've got good things ahead...a marriage, a trip to vegas, a happy dog, a bike planning conference, and so on and so on.

    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

    Who Am I

    Pretty quiet week on the myeloma front. No shots, no appointments, no lab work.
    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

    Emotional Day

    Yesterday, I went to a birthday bbq for Steve's grandma. Steve, as you know, is a fellow patient at Dr. Phan's office. He is the first person I met when I started chemo. His grandma is usually with him.  She turned 83 yesterday and is in amazing shape. She and Steve are the nicest people. Steve, though, isn't doing so well.  But he's still fighting. I felt a little sheepish that I'm doing well and we basically started treatment around the same time.  Sheepish is just one emotion of the day. It was a sad, beautiful, touching day. The bbq started with a  couple of prayers, in both Spanish and English. Steve gave me a couple of crosses, for me and Leslie. A beautiful gift. A couple of nurses from one of the local hospitals were there. I know them as well, and it was great to see them. And there were a lot of family members there. The birthday was for grandma, but the party was also for Steve....almost seemed like they were all there to spend time with him, in case it was the last time they'd have a chance. Very sad. But it was also an amazing day, to see him being brave and real. He knows what is going on. He actually had a brief hospital visit yesterday morning.  And that was my day, a reminder of the seriousness of this, but also a great insight into the human spirit and strength and love.