I'm One

I first heard "I'm One" when my brother Alan shared the album Quadrophenia with me as he was experimenting with The Who probably around 1974/75. The Who made a career out of speaking to us youngsters. Please listen to Keith Moon's drumming after the song gets going, he laid down an impressive bit of music. I definitely fit into the demographic of young teenager; feeling a lot of angst over my lot in life.  I wasn't popular. I didn't have a girlfriend. I was overweight and would hear the term "fatso" quite often.  I didn't have a lot of friends, and to top it all off I couldn't beat my dad in one-on-one basketball! The stereo turntable played many a rock song in those days expressing frustrations, in the mid 70's it was very much in vogue.   I heard I'm One and felt like it was written just for me.  Pete Townsend, who it would later be discovered had some of his own troubles growing up- composed the Quadrophenia rock opera after the successful Tommy, in 1973. The opera tells the tale of Jimmy who is growing up in 60's England with many troubles including taking his own life. It is obscure today, but there are many great lyrics in contained within all of the songs from the album- my favorite being: "I got a Gibson without a case, but I can't get that even tanned look on my face."

My sister Cathy and I 1977

When things are not going well, a headwind starts up just as you start to peddle your proverbial bicycle; take stock, regroup, get into a tuck, or peddle faster. You will succeed, or feel better trying. Instead of why me? try to think about the satisfaction of overcoming odds and staying true to yourself as you do it. There are a lot of surface distractions, sometime people who pretend to support you or care. If you find real people who are supportive, revel in their company/advice.

Had a fun day in Tacoma at the hospital/clinic yesterday, as I came down with another blood infection. They got me started on the always rough and ready vancomycin anti-biotic. Then it was discovered that my central line catheter was infected so it was removed (YES!) More meetings with infectious disease doctors and we were sent home at 5PM. I am very happy because: No central line means I can swim again soon! I should not contact as many infections, and that darn thing was a royal pain in the arse! (My anglophile stuff is coming out due to a recent wedding.)  Now the infection just has to be beat back followed by a couple of chemo rounds and I am done with treatment. Living Happy!

Dust in the Wind

I was driving home, somewhere near 1:30 in the morning, my mother’s words ringing in my ear about drunk drivers being on the roads at this hour. I was traveling north on old Hwy 99 and sure enough, following a guy playing bumper cars against the concrete barrier. I was driving more carefully for other reasons than drunk drivers though. I was so careful that I forgot to turn on my radio until I reached I-94 in downtown Portland. Finally reaching what to me was the home stretch on my way to freedom I turned on the radio. My first of three presets came up on KGON, FM 92.3  Portland’s Album Rock. Kansas and Dust in the Wind was just beginning. After what I had just been through I did not want a melancholy sad song. Preset two selected, again what do I hear- Dust in the Wind! Now I am feeling like a spell has been put on me.  I had to plug in my 8-track tape, Foghat’s Fool for the City.  I made it home and my mom’s caring after action words…

What is it like to receive the word from a doctor that you have cancer, ALS (Lou Gehrig’s disease), an inoperable brain tumor?   My answer is complicated, this story attempts to explain it with a true story. 

I was 19, in my second year of college and working for Portland business icon, Bill Naito. He was a cherub Japanese American man of unbelievable intellect.  While a very rich man he owned and operated his import/export business working long days every day from his desk placed in the center of the Norcrest China Company main floor in Portland’s White Stag building.  I started working for Bill while a high school Junior, answering a two line ad looking for warehouse workers.  Bill Naito himself interviewed me, and offered me the job at $2.10 an hour.  I was giddy. Like most people, I worked hard and after a short time I was not only working in the warehouse packing china and glassware boxes to be shipped across the country, but Mr. Naito helped develop me into other aspects of his business. Before long I was given the upgrade to be the human delivery guy. Not just a driver, oh no… I got to take the day’s receipts in a big bank bag which was chained and locked to my waist area. The only way it was removed was killing me, or using the keys to unlock three locks attached to the chains.  After I was locked up, a smock was placed around my shoulders and off I rode on the Naito bicycle the ten blocks or so to the Bank of California.  After being buzzed into the vault, the nice people at the international Bank unlocked my three locks, removed the chain, and took the deposit bags.  I knew the risks; believe it or not I liked that part of the job!  One day I returned from one of my deliveries and noticed a new accounting employee who was cute and approachable. I asked her out, it was a date. We only went out once.   I took her to a basketball game, some dinner, and then we went to her home.  Her folks were gone, so we were just watching some T.V.  when a loud noise came from the front of the house.  My date said; “You better hide.”  Pride aside, I said something like whaaat while she added “Now!”  I could hear a second loud noise and a lot of car doors opening.  She added- “it’s my ex boyfriend, he probably saw your car.” oh and... “He’s got a temper.” Do I take a stand against a large group, or hide?  Better part of valor and all that-  I hid, going into the garage and selecting a location behind the washer and dryer. It was a tough fit, but I made it just in time. A group of guys made it into the house, storming around while one guy kept saying “where is he, he’s dead” and other unprintable things like that.  My heart rate went up, I started thinking about weapons I could use, or how I would escape.  When the garage door opened- it moved to: will I survive?  The main pursuer was so enraged he ran right by location and back into the house without a proper search- and in a few more minutes after interrogating his ex girlfriend, he and his posse were gone. Eventually my date called to me and wanted to talk it out. Her ex was a Portland high school football star, 6’4” 240 on his way to stardom in college and beyond.  Would he and his friends have killed me? I will never know, but at the time the answer to me was a definite yes.  That feeling of dread, helplessness and uncertainty was what I felt in 1978 and again in 2009 when told about the Leukemia/Lymphoma.   Many people in my cancer community feel the same thing when there is a setback, a relapse, a bad blood test or worse. We try to put on the good face and stay positive hoping that medical science, prayer, and hope are on our side.  My heart goes out to all of the people who have to live with a difficult diagnosis and tragedy in their lives.  To everyone who offers support and encouragement to us- please know that we feed off of the support with an appetite that is unending and we can’t do enough to thank you.

 

To close the loop on this story, I could not listen to Dust in the Wind for years after my little experience. One day a few years ago I happened across the lyrics and read them again to move past my blockage.  I checked and found that the writer, Kerry Livgren commented that he wrote the song to remind people that life goes by quickly; will be over long before you know it; and there is nothing you can take with you when you go. I think it also poses a question about the meaning of life and how insignificant we all are in the big picture.  Live Happy, compassion is not a bad thing, thanks for indulging me!

That's Life

Day before Easter hike to Skoomum Falls

L-R order on who's the boss in the family

I will start today with some new news we have been waiting for. After much preparation, conditioning, and a lot of appointments in Seattle we received a new recommendation from the experts yesterday. The entire group of transplant doctors, a long term follow up doctor who specializes in graft vs. host disease, and the preeminent ALL expert all got together to discuss my case. The unanimous recommendation was for me to put the brakes on and not have a second stem cell transplant (YES!) They also recommended 1-2 more courses of Nelarabine chemo. Yvonne and I put the team to the test, in essence I had a late graft (new cells) versus leukemia effect occur after I started the second transplant process. The effect took my blood components and rearranged them to the positive, to the point now where my blood is in the normal ranges. At the same time the graft versus host disease flared in my face/skin and liver. That is in the process of being corrected with some medications and is mostly under control. The hope is that the extra chemo and graft vs. leukemia effect will move me to continued remission for as long as possible. While we spent a lot of time preparing for what we were told was necessary, we are very thankful that there were delays in donor selection to buy me time to see the original transplant actually working right now. I am very thankful for all of the prayers and support of you all which has kept me going in a positive direction. I can't say thank you enough!

It was 1966, the USA had just survived the first Musical British Invasion. I was about seven, my memories of the time are limited to probably the big stories of the time like civil rights/unrest, the beginning of the Vietnam war, baseball, neighborhood friends, and of course the Beatles. I didn't ask mom and dad to buy Frank Sinatra albums I will admit. Frank Sinatra released That's Life in 1966, (written by Kelly Gordon and Dean Kay.)  If you look at the lyrics and listen to the clips, it is a message to us all. Roll with the changes, pick yourself up when you fall and get going...  Like Frank crooned, when you are riding high in April, shot down in May; get back on top in June!          Off to the races!





or check out a live version here:  http://youtu.be/avU2aarQUiU

John Dymerski, Me, Sadie, Alice Dymerski 

Spring in Enumclaw!

We are only a month into Spring, April 18 we woke up to a nice little blizzard. The 1" of snow probably melted by noon.  I won't make any climate change comments because either way I go will draw criticism. I'm just saying...
I chose an early Neil Young song for my title today to continue on the vein of playing songs that have a special meaning for me and of course the obvious weather connection. My father John, and his wife Alice are visiting from Utah.  Andrew is also still in town so we are combining clinic visits with other touristy things like going to the Tulip Festival in 41 degree temps enjoying the early bloom. If you are thinking of going up there, I would wait until next week but there are some fields open. Neil wrote Winterlong about a love or drugs, not sure which. I just like the melody and guitar riffs and how the simple song comes together. We ended up last week at the Hutch with donors still being worked up and we saw a long term follow up Doctor who is now talking to my attending physician and a second doctor who specializes in my condition. They are going to present a recommendation to me about my future treatment (transplant or perhaps an alternative) by this Wednesday, I am very anxious to get to clinic tomorrow to get going with the decision.  Live Happy!

The Dymerski boys at Tulip Town

Won't Get Fooled Again

It's time for some other than music or cancer stuff from yours truly. I seem to have become a news junkie since being on sick leave. Having some extra time I hope to see what the mood is on some other topics. President Obama's vision for cutting the deficit? Not this time, but you never know. I will start with what has happened to this country in terms of responsibility. Who is best to decide what a child learns, eats, wears? In one Chicago school, the kind people in the know have dictated that approved school lunches are more nutritious than what mom or dad can make at home. So buy a lunch or else!

http://www.npr.org/blogs/thetwo-way/2011/04/11/135329477/in-one-chicago-school-a-mom-made-lunch-is-not-allowed?ft=1&f=1001

Since I am posting this tidbit, believe me there is plenty of news about the lunch issue out there, you probably figure I am opposed to some administrator telling parents that a peanut butter sandwich is worse than twigs and berries. I am actually a bit peeved that this is even an issue. Why are we in 2011 still trying to figure out what is nutricious? Please weigh in, and in the meantime... Don't let them fool you again! (Them being the government, news agencies, experts of all kinds...)   Yvonne and I are hoping to hear about my much delayed stem cell transplant today, we are here at the Hutch awaiting the clinic visit in minutes! More later
Enjoy this 9-11 concert for New York footage of The Who and bassist John Entwistle's last performance before his early exit from this life. The three remaining Who original's bring down the house.

Badge

I remember shopping the used records stores in the early 1970's and coming across a compilation album with some interesting names emblazoned on the front.   Eric Clapton, Pete Townsend, Ronnie Wood, Steve Winwood to name a few. Of course I plunked down my 4 bits ( .50 to you of the younger generations.)  The album includes a great collaboration written by Eric Clapton and George Harrison called Badge.  It's one of those songs I loved so much when I heard it once I had to listen again and again until I completely wore out the vinyl grooves to the already used album.  I am not sure if it was the beat, the Beatles-like guitar riffs, or the total package of coolness.  The tune was penned in 1968, released as a single in 1969 and was included on the final Cream album, Goodbye.  I searched for a good version and found someone out in Youtubeland took the time to record the Rainbow Concert live album version which definitely includes the real vinyl sound. Eric had recently kicked his heroin habit, Pete Townsend helped to organize a coming out party and Eric got back to his hits and "Blackie" his famous Fender Stratocaster guitar.

Over the past year I have mentioned Graft Versus Host Disease, in discussing the effects of a Bone Marrow or stem cell transplant. I had some acute gastrointestinal GVHD back in July of 2010, and since then have had chronic GVHD of the mouth and sometimes skin. These next photos show me today after being diagnosed with some more chronic GVHD of the skin Friday (that has been getting worse for about a month.)  The sharp Dr. Bar caught it and put me on Prednisone and Beclomethasone (Steroids) to nip this in the bud before my hopeful stem cell transplant April 26.  I have been walking around in public, and quite often get some weird looks, I never really realized how bad it was getting and why I was scaring people so much. On the flip side, it doesn't hurt or even itch much and is dying away with the steroids.  I am hopeful I am about to lose this Badge.  Live Happy, don't forget to say "I love you" to when you get the chance.

I asked Yvonne to get The Kramer in the shot

Close up

Wall of Death

I did not turn morose, and I am not making any predictions with this title today! I have decided to share some of my favorite offbeat and other songs that could be from popular artists or unknowns. My first "should be heard for the lyrics alone" is Richard Thompson's version of Wall of Death. Nancy Griffith actually wrote the folk song, Richard and Linda recorded it in the 80's Richard and band sans Linda are seen here on the live version. REM also covered it. It's all about the lyrics to me, although Richard Thompson is known as a virtuoso guitarist.  Beware of the bearded lady as you listen or read the lyrics.  (You can expand the lyrics to read them near the top of the youtube video.)  The song is about the writer's experience riding those fun rides we rode as children. There is of course deeper meanings as you let your mind wander.

We have had an interesting week so far, we thought I would be starting radiation today ( seven days of testicular radiation in a row!) The testicular radiation is done as that is where the bad leukemia cells like to hide, and the nice doctors want to make sure everything unfriendly is killed off before the stem cell transplant. On Wednesday we learned that after losing two 100% matched donors the experts are still doing a work up on an unmatched third donor, so another week's delay was made. I still have some strange liver function tests. The ultrasound guy said it looked fine yesterday, so I am at a loss for the bad tests. Lastly, for over a month now I have had some dark skin changes just on my face that seem to be getting worse. The skin isn't causing pain or obvious discomfort and no one knows what it is.   If you see me, have some courtesy- to quote Mick Jagger... 

Being a stem cell or marrow donor is as easy as going to www.marrow.org  The nice folks at the National Marrow Donor Program will send you via US Mail a free registration kit. They ask for a donation, there is no cost unless you want to donate. There are lots of restrictions for people with serious medical reasons, donors have to be 18-60 years of age.  After some internet sign up, they send you some swabs to collect DNA which is then mailed back via a prepaid envelope.   You or a loved one could save someone's life someday.

Deja Vu

Back in the late 1960's David Crosby was a member of The Byrds, Stephen Stills a member of Buffalo Springfield, Graham Nash was with The Hollies, and last but not least Neil Young was a member of Buffalo Springfield plus a solo star. They got together with some session musicians and formed Crosby Stills Nash and Young in 1970. Their first album was titled Deja Vu. I like the song of the same title, but chose a Neil Young unheralded song Country Girl as my song of the post today because it shows the unbelievable four part harmonies CSNY could do when they were "in tune." Today's post is titled Deja Vu because of course we fell like we've been here before.
It's been a wild ridefor Yvonne and I Since I last posted March 24. I ended up being admitted to the U. W. hospital later that day with a blood infection. While at the U.W. I developed another blood infection and had my central line catheter removed and eventually replaced. I was released March 30th and happily went home. When we went into the clinic the next day things went O K, the Doctor told us that there was potential good news we would hear by Friday about a new donor being found for me. We were caught a little off, he saw we were a bit puzzled and thought U.W. doctors had told us that my scheduled donor had been disqualified. Someone forgot to tell us while I was at U.W.   Last year I lost the first scheduled donor too, Fred Hutch folks scrambled and eventually found a donor for me. We found out Friday that donor #2 was also DQ'd. We were given some hope that a third not quite matched donor was being worked on, hopefully we will know by early next week if the transplant is still a go. All of the testing including a very revealing testicular radiation screening session is only good for thirty days. If I am delayed with a donor by as little as two weeks then we repeat all of the testing and probing again.  The folks at the Hutch do their best and are confident as always, so we are hopeful going into next week.  Our weekend is looking up, we are heading east to escape the gray and rain visiting Mikhael who took Sadie for us for two weeks. We will probably bring her back with us for luck.