My Lucky Socks

Years ago my good friend Brian, who races on a Cannondale bike team asked me if I'd like to try Cyclocross racing.  Cyclocross bikes are basically road bikes with brakes and tires made for off road riding. It sounded like fun to me, the only problem was that I didn't have a Cyclocross bike and Brian is a lot smaller than I am, so he didn't have a bike I could borrow.  I was going to have to ride my Trek Mountain bike, which was made in nearly the same era as the Schwinn Comp.  The Trek was a beast that made all sorts of noises, and sometimes skipped gears for no apparent reason.  Nonetheless I thought it would be cool to check the sport out and see if I liked it enough to invest in a real Cyclocross bike.

The day of the race arrived and I met Brian at the course, quickly realizing that perhaps I was a bit out of my league.  There were guys riding bike trainers next to their car, drinking fancy sports drinks.  Some guys had 2 or 3 bikes with them and were trying to decide which was best suited to the course. Meanwhile pulling into the parking lot with the Trek ignobly displayed on top of my car, I felt like I had arrived in the Oscar Meyer Wiener mobile.  I parked as fast as I could and quickly pulled the bike down from the top of my car.  I found Brian, who took one look at me and said, "Is that what you're wearing for the race?"  I had on a pair of cargo shorts and a t shirt.  "Um...yup"   Feeling bad for me Brian offered to let me borrow one of his extra uniforms.  The only problem is that Brian is a good 70 pounds lighter than me and a bit shorter.  It was not going to be easy squeezing into his little spandex unitard.  I took the getup anyhow and got into my car to put it on.  By the time I came out I was dripping in sweat from all the effort, but I got it on.  One look at Brian's face told the story, I looked ridiculous.  Thankfully, Brian is a loyal friend and he stuck with me.  We went for a warm up ride, where he got to hear first hand the symphony of squeeks, clicks, and wheezes my bike made.  Brian told me I'd be fine, and that the race would be fun.  Finally it was time for the race to begin.

We rolled up to the starting line and immediately the comments began.  "Sweet Trek man!". "Yah its my training bike." I said.   The starting gun fired and I put all of my strength into taking off.  I wanted to blast off and show those guys that I could hold my own despite the bike.  Then it happened.  I felt and heard a sickening rip in the ass of my uniform right up my back.  This would not have been so bad, had I decided to wear something under the uniform, but I was trying to conserve space.  I immediately heard a mix of laughter and horror from behind me as riders became aware of my wardrobe malfunction.  But I'd come this far and I wasn't about to quit, so I pedaled even harder (standing up) hoping to get in front of the entire pack.  Perhaps this was the advantage I needed to do well in the race.  Nope.  Halfway through the first lap I could tell I was close to last place.  At one point I heard a shaky voice that sounded like someone's grandfather say, "Son you've set a very nice pace, but now I have to pass you".  When he went by I could see that he probably was someone's grandfather.  Needless to say, I did not win the race.

After the race I became something of an honorary member of the team, and was able to get my own uniform.  Including the lucky socks I wore yesterday to my bone marrow biopsy. Be it luck or science I'm happy to report that the biopsy showed I was at 6% blast cells, which is basically remission!  I'm ready for transplant.  The Nexavar is working better than expected. Yes!

A Fungus Among Us

Today is a big day.  I have two tests to get through.  The first is a bronchoscopy, followed by a bone marrow biopsy.  On Monday I had a CT Scan that showed some very subtle signs of a potential infection in my lungs.  After treating me with broad range IV antibiotics to no avail, the doctors are now thinking the fevers are due to a fungal infection.   I'm imagining mushrooms growing on the inside of my lungs.

So what to do when there's a fungus among us?  Why thread a camera up my nose, down my throat, behind my voice box and into my lungs to have a look around of course.  Then for good measure fill up my lungs with saline solution and aspirate it. 

Immediately after the bronchoscopy they'll flip me over like a fish and do the bone marrow biopsy.   The bone marrow biopsy will tell us if the Nexevar (chemo) is working.  The ideal result would be remission, or under 5% blast cells, though even if I'm down from 64% blast cells, which is where I was after the last biopsy, it will be considered a positive result.   I will post the initial results this afternoon.  Keep your fingers crossed!

A little bit of the old In and Out

It was a perfect throw.  The speed and accuracy of which left me standing motionless in shock for quite some time. Then the reality of what had been hurled at my face began to sink in.  It was warm, and wet and stinky.   It made a sickening noise as it stung my face.  I could hear a shriek of fiendish laughter and the pitter patter of little feet taking off down the hall as Brogan's pee soaked underwear fell from my face to the floor.  Welcome home Daddy!  This was yesterday during my 6 hour stint at home.  A couple hours later I had the chills, and then a 103 fever.


So here I am, back in the hospital.  While I know there is no connection between my face full of pee soaked cotton and the fever, it certainly is not cheering me up here.  The doctors still aren't sure what the cause of these fevers is, so we are playing around with different IV antibiotics.  It's uncertain how long they will keep me this time, based on my poor performance during release yesterday, but I'm hoping to be out in time for Wakefield's show in Burlington on Saturday.  If you're going to be in the Burlington area on Saturday afternoon, check it out.  The show is outside at Red Square from 5-8 PM. The band is called Cat Under the Stars.


So far it does seem that this latest form of chemo is helping.  We will get a much clearer picture on Thursday when I have yet another bone marrow biopsy.  At this point my ass resembles that of a pie thief.   If everything looks good and the doctors feel comfortable moving forward with the transplant I will head down to Dana Farber on June 3rd, to begin preconditioning for transplant.  If things look like they are moving in the right direction, but are not quite at the level we want them, the transplant might get pushed back a bit, so that I can stay on the Nexevar a little longer.  We shall see.

Back in Prision

I'm back in the hospital again because of mild fevers.  Anytime I spike a fever over 101.4, I have to come into the hospital for blood cultures. The doctors aren't really sure what's causing the fevers, but they are going to start eliminating potential causes by taking out the port in my chest that's been there since February 3rd.  The rationale is that its a possible source of infection and would have to be taken out anyway when I get to Dana Farber because they like to use their own.  In fact they install 2, one on either side.  I can only imagine the amount of scars I'll be left with when all of this is finished

Needless to say I really don't want to be here, and I can't wait to get out.  I was doing really well at home and having a great time living a somewhat normal existence with my family.  On Thursday I went for a 3 mile walk and felt strong.  I would love to start running again but the drug I'm on now causes the skin on my hands and feet to break down and get chaffed very easily.  Already all of my fingertips are raw, and the joints in the my thumbs.  The ball of my left foot is also getting pretty tender.  

Anyhow now I'm in the hospital and feeling the progress I've made in the past few weeks slip away.   The hospital bed is an insidious, entropic wasteland.  If you're not careful you will get stuck in it.  People try to do everything for you while you lie there, so there's never a need to get out of the bed.  When no one else is around things on the other side of the room look like they are impossibly far away.  Surely too far to get out of bed for.   Sometimes I lay there for half an hour trying to muster the will to get up and close the shades so I can sleep a little longer in the morning.  Its definitely time to get out of here.

Quick Update

Just a quick update to fill you in on the details of the past couple of weeks.  I was able to come home from the hospital for Easter, which was awesome.  The Wednesday following Easter I drove down to Dana Farber for a series of tests and consults in preparation for my transplant.  While there I was informed that the 12 out of 12, 53 year old female donor has been replaced.  They couldn't tell me why, but I now have a 9 out of 10, 44 year old male donor, who may or may not have been exposed to Mad Cow Disease.  All this really means is that he is European (they said he's probably German, but I'm not supposed to know that).   I'll post more about this trip later.
Last Monday I had another Bone Marrow biopsy, and unfortunately it came back pretty hot.  64% blasts.  5% Blasts is considered remission.  Since it appears that my disease may be refractory, meaning its resistant to standard chemo treatments, the doctors are going to try a drug called Sorafenib.  Its an oral pill, that I can take at home.   I've been in a lot of pain again so I'm back on the Oxycodone and Oxycontin.  The Sorafenib treatment should last 3 weeks, which is going to push my transplant date back by at least a week if this drug gets the blasts under control.
Lastly on Sunday night as I was falling asleep and noticed my heart was racing with what seemed to be an irregular heartbeat.  Thankfully my mom was still in Vermont and able to drive me to the Emergency Room, since nothing happens during normal daylight hours and our kids were off in their own lala land.  When I got there they determined I was in Atrial fibrillation, which means I had an irregular and rapid heart rate - yet another thing typical of older people.   With a little help from an IV drug called Cardizem and some mental focus (including Missy's breathing techniques that as mentioned earlier may have helped her in labor but did nothing for a man with leukemia induced muscle spasms) I was able to bring my heart rate down and into a regular cadence.  The doctors aren't sure what caused this, but one theory is that my blood counts were way too low.  I got two units of blood yesterday and am feeling good this morning.  Now I'm off to the clinic once again for an echocardiogram, to see if there is any obvious damage to my heart.