AUBURN RUNNING COMPANY

 

The endurance capital's running source!

5/24/09: To demonstrate the unpredictability of this disease, all of the progress that was made over the last two months evaporated this past week when they found that the leukemia has returned. Obviously this is devastating news for us. We were so close!  We will now be starting an experimental clinical trial in the next week to try and stop the cell growth and get me back in remission, with additional chemotherapy as a secondary option. But each time a relapse occurs, it is harder to treat; we can't use the old chemo regimen or get another bone marrow transplant. Twice now I've come out of remission so we are aware of the implications of this latest development. I'll leave it at that and report back later with the results of the new treatment when I can.

5/7/09: Day 50 of the BMT program, the halfway point!  And some great news today at my clinic visit. In 6 days another medication will be adjusted. Prednisone, which weakens the muscles, will be reduced to 25% of the original dosage which will allow me to start rebuilding through more aggressive spinning and hiking. Already in the past week I've noticed more definition in the legs, and my endurance seems to be getting better. And because the recovery is going so well I've been given the green light to start spending my weekends at home in Auburn! That means I can attend the Memorial Day training weekend and book signing at our store (by  the way, the book is excellent). Much reason to be happy these days, as if it hasn't been going well enough already. Not how I envisioned cancer running its course. I am very fortunate.

4/30/09:  Day 43 of the 100 day BMT program, and we continue with a solid recovery. If this were Western States we'd be pulling into Last Chance! That may have more relevance if the transplant had not been as successful, but fortunately that is not the case. Adding another temporary medication and dairy products back into my diet have had not any noticeable effect, and my bi-weekly clinic visits have been quick and seamless. Same questions, same answers. Nothing seems to change much, I feel great and am making good progress with just about everything from walking and spinning and lifting some weights to eating and sleeping without any problems. Tastebuds are back in full force and that morning coffee tastes as good as ever. All that being said, if someone I know were to see me, I would still have the appearance of a cancer patient, a bit gaunt with mostly no hair, but not for long. Slowly the muscle loss is diminishing as the medications are reduced.  And already I've noticed some fuzz showing up on the face and head, and if it's anything like last time, it comes on like gangbusters over a few weeks. Hard to believe it was just one round --- two hour's worth -- of a very strong chemotherapy drug (VP16) that was largely responsible, not the transplant itself. It seems to be finally clearing itself out, which may attribute to the way I've been feeling. Nasty stuff that chemo. This weekend I'm looking forward to visiting friends at Miwok. Good luck to all those running!

4/18/09: What's there to say --- all continues to go well. Beginning next week my clinic visits are reduced to Monday and Thursday. Very tempting to sneak away to Auburn for a quick weekend! But I'll try not to go against the terms of the program and wishes of the staff. I've assured them that even though things are going well not to be concerned that I will do anything outside the guidelines. Less than two weeks until I can have dairy again, and the first thing we're going to make is a mac and cheese casserole of all things. You just get wierd cravings sometimes. Pizza will be a close second, and amazingly my Physician Assistant hasn't objected to restaurant pizza given that after cooking the pie isn't touched by human hands. So it will either be Amici's, Ramona's or Applewood. A few of my meds have also been reduced, though I've added magnesium supplements which make my stomach feel a bit wierd, and apparently my sodium is a bit low, which is surprising because I've never skimped on salt, but I have no problem sprinkling on a bit more. Still have some hand shake from one of the immunosupressants, but that will go away too. I'm spinnig 30 minutes a day in addition to walking Alex and George briskly for an hour, which seems to suit me well at this point. I'm also spending more time in the kitchen and while I'm happy about that, I don't necessarily need to gain weight. Everything tastes pretty normal now, and they said it was unusual for my tastebuds to have returned at this point but what a shame it would have been to not savor Patrice's red pasts sauce with hot italian sausage for dinner the other night!

4/13/09: What a wonderful recovery it's been so far. Continued steady progress on my blood counts keep me in the normal range and away from any exceptions being made to medications, transfusions or extended stays during clinic visits. Living in a comfortable little place with Patrice and the dogs for almost two weeks now, for the most part I feel pretty normal except for some obvious atrophy in the quads, which is what will happen with this program and the meds. I couldn't run a 1/4 mile to save my life, but I don't  want to either if it means pushing too hard and setting anything back. Brisk, hour long walks with the dogs along the baylands in Redwood City is surprisingly enough excercise for the time being. Also, I've got my spinner bike at home too, but again, no power in the qauds makes it challenging. Eating and drinking really well, no more physical ailments make this a piece of cake. I hope no one thinks I'm suffering down here. The hardest part now is being away from home. Images and memories of friends, the trails and of course the shop dominate my daily thoughts. I visit the clinic 3 days a week, with each one lasting about 2-3 hours depending how quickly they get the blood results back, which are always positive, though on a few ocassions I've had to get magnesium transfusions of all things (another medication side effect). Soon I will only need to go in Mondays and Thursdays as things become more steady and predictable. Only two weeks left before I can have dairy products again!!!  As a cheesehead, it has been excruciating not to have any cheese products, and of course yesterday's Easter dinner with my brother, sister and brother-in-law just had to include a gruyere au gratin potato side dish which everyone seemed to really enjoy, followed by Breyer's vanilla ice cream on my brother's homemade cherry pie.  Although I enjoyed the ham and biscuits, it was hard not breaking the rules and joining in. We continue to be told that I was the fastest release from the bone marrow transplant program to the outpatient clinic that any of the staff can recall! That's great to hear, but only if it meant getting home sooner, which unfortunately they aren't willing to compromise on because of the unpredictability of graft vs. host disease. But the goal is still mid June.

3/31/09: More progress!  Within 4 days my levels have come up to nearly normal range. This is about a week or two faster than what is typical according to most of the literature I've read on transplants where the hospital stay can be anywhere from 4-6 weeks.  But they see fit to release me today, just 18 days in.  Around midnight last night they woke me up to move me into a shared room, and this other guy was about two days away from his transplant and not looking too good (though he still had his appetite and ate everything on his plate, which deserves an award for bravery). About noon today they started taking the IV system down and preparing all the release forms, and within two hours I was processed for release.  Next thing I know I'm fully dressed, bags in hand, walking out of the hospital for the first time in over two weeks, into a beautiful spring day with blossoms falling all over the ground and flowers blooming everywhere, taking a seat on a bench to wait for Patrice.  Within a half an hour I'm home, greeting my dogs and surveying my new surroundings, a nice little rental in nearby Redwood City. Immediately I scope out the great room with tons of books and a desk for the computer, not to mention an old leather chair with an ottoman and reading lamp. Perfect.

3/27/09: Incredible progress has been made, though not without a bit of drama. Today is the day I officially "engrafted," meaning the stem cells from my brother accepted their new home and have attached themselves to start producing marrow. Also as of today, most of the ailments of the past few days have cleared up and I'm feeling much better. However, it was learned that I experienced some sort of hallucinatory trip the other night, and I do recall some of it happening, but I hove no clue as to why. Apparently I was watching an episode of "Life On Mars," some TV cop show, and I must have thought I was part of the action and somehow had to sabotage my IV system.  I'll never make sense of how or why this happened, but I did a pretty good job of disassembling the 8 pump units on my IV, tubes and all, and spilling some blood on the floor in the process.  I recall sudddenly coming to and thinking, what the hell have I just done, and slowly but reluctantly reaching over and pressing the button for the nursing station.  Fortunately the ward must be very familiar with the effects of drugs on patients because the nurse didn't even bat an eye when she came in.  She expertly put it all back together as if it was the most routine thing she had ever done, checked me out and hit the lights.  I got a good razzing from the docs the next morning, but strangely no one thought much about it.

3/23/09: Boy, there's just no way I would have had the capacity to update this site any sooner, as it is this is being recalled later since much of the week following the transplant was a blur.  This day is notable because it was probably the lowest point of my hospital stay.  My blood levels had not only bottomed out to the point where I truly had no immune system, but I felt absolutely terrible, so forgive me for keeping it real as I describe some of what I was experiencing: nausea, diarrhea, mouth sores, sore throat, itchy skin, blurry vision and occasional vomiting or the feeling that I would every time I stood up or moved around.  The mouth sores are particularly nasty as they make your tongue, cheeks and gums swell to the point where you can barely pronounce any words, and you are required to rinse with a saline solution at least 5-6 times a day to minimize any further infection, whether you want to or not (this was a continual problem --- having to do certain things when all you wanted to do was sleep and wake up a month later).  Keep in mind that during this time I am hooked up to a an IV system that has grown more complex, with at least 5 different ports all carrying different medications and maintenance liquids into my chest catheter.  At night the room lights up with green glow from all the individual IV pumps that make a steady, rhythmic purr, some of which get air trapped in the line and beep mercilessly until you buzz the nursing station for someone to clear the line.  With these units you have to be absolutely aware at all times where those tubes are when you move around, otherwise you can easily snag them, the fear being that you will rip the catheter out of your chest (this happened with the IV line on my arm at Kaiser).  Like I said, this was the worst day, so nowhere to go but up from here.

3/18/09: What a difference a day (or two) makes. Today was my "second birthday" as they like to call the stem cell transplants here in the clinic. At 11:45am this morning my brothers 8.5 million cells were transfused via IV (I only needed 5ml but they said someone who is bigger gives more; he's 6'5" and 240lb, so he couldn't help it). It all went off without any problems, but all the pre-meds and post-meds sure made me tired.  Slept until about 6pm, and am looking forward to going back to bed. The hard part was being told I am confined to my  room for the next 14-16 days, or until my white blood cells come back into range.  That means I can't even go for a walk out in the ward like I thought I could earlier. My misunderstanding! So I have a 12' x 12' room to make the most of, trying not to get too soft so that when I am out I still can walk. They want me to walk in circles 5-10 times a day, and do some squats also. There is a treadmill on the floor and its use must be supervised, but I plan on asking for it every day if it can fit in the room.  We'll see tomorrow.

3/16/09: Long night, not too much sleep in between the constant trips to bathroom from the heavy flow of IV fluids, but since I'm not terribly active I don't feel tired. In fact this morning I feel very refreshed, and after a breakfast of Cream of Wheat, banana, bran muffin, apple juice and coffee I feel like I could go for a run.  Weather conditions are certainly ideal with some overcast and bits of sunshine peeking through, maybe mid 50s. Outside on the walkway beyond the garden it's getting busy with doctors, nurses and aides going to and from various clinics in their very official looking white coats and multi-colored scrubs, with a sense of urgency that only someone with lots of responsibility can have. Last bag of chemo today, Cytoxan, then rest tomorrow before the transplant on Wednesday. After that I won't be allowed out of the ward into the main hospital for walks, but apparently I will be getting an exercise bike from PT so I at least I'll have some form of activity. A team of 3 doctors from the transplant team just paid me a visit, all decked out in their protective garb (mask, suit, gloves) as if I've got the plague, but it's just a precaution to prevent any bacterial infection.  They seem happy with my progress and aren't voicing any concerns, so that makes me feel good.

3/15/09: Transferred to a private room today, my permanent home for about the next 3 weeks, and I certainly can't complain about the arrangements: a large panoramic window overlooking a garden of mixed vegetation with a view of the distant hills where I was first introduced to trail running by my brother Mike when I moved out to California in 1990. In fact last week I made a few late afternoon drives up there after the radiation treatments, heading out Sand Hill Blvd. through Woodside and Portola Valley to Hwy 84, then up to Skyline Blvd. and south to Page Mill Rd. It hasn't changed a bit, with all the open space preserves still as lush and beautiful as I remember them from over 10 years ago, and the twisty road just as fun to drive along.

3/14/09: Admitted to the BMT unit this morning, about the same time runners at WTC heard the starting gun. I hope there are many ARC shirts out there today. Just got a call from my employee Connor Curley, who despite nursing shin splints for the past 3 weeks and hardly running during that time, pulled out a very respectable 5:01 in his very first ultra, which leads me to believe could run under 4:30 when properly trained. Results just posted, wow, many names I've never heard. The extra mileage seems to have slowed the times.

3/12/09: Almost finished with radiation treatment, just 1 more today and 2 tomorrow. It's unlike any humiliating experience I've had so far, strapped in a harness in an enclosed booth wearing nothing but your shorts, standing perfectly still and staring directly into a large, unsympathetic mechanical eye while a buzzing noise fills the room for 8 minutes straight. Although radiation isn't something you bring to show 'n tell, you are reminded of the apparent dangers when the radiologist runs for cover before a huge, 6" thick door closes behind her. A lot goes through your mind during that time --- Hiroshima, Nagasaki and Chernobyl for starters --- but so far no noticeable reactions except for a slight loss of appetite and what looks like a mild sunburn, though we know what some of the long-term risks are: sterilization and the possibility of contracting other forms of cancer down the road. Now I'm ok with doing my part for zero population growth, but I do take issue with getting cancer again. At least let me get over this one first.

3/4/09: Still on target for a bone marrow transplant (technically a stem cell transplant) at Stanford Hospital. I will be leaving my home in Auburn on Sunday, 3/8 for a full week of outpatient radiation treatments and officially admitted to the hospital on 3/14 for a couple of days of chemotherapy before "day zero" of the transplant on 3/17.  From that point on, I will spend about 2-3 weeks in the hospital while my blood levels return to normal before being released to my new temporary home in nearby Redwood City with Patrice and the dogs.

It seems fitting that the entire transplant procedure is said to last 100 days on average and that my goal is to return home in time for Western States.  In other words, all I have to do is pretend to be in training and time will fly by!! Although my activities will be limited, I plan on sneaking out now and then if possible, so if you happen to see a skinny bald dude wearing a funny looking WWI gas mask at Miwok, Quicksilver or Ohlone, be sure to say hello.

-Dan Moores