Daisy's post-stem cell transplant email update.

This is an emotional and inspiring email from my good friend, and honoree, Daisy Hebb. She was diagnosed with Leukemia in late January, and just began her stem cell transplant on Friday, June 20th – just two weeks ago. Her words are a vivid, and powerful, reminder of why I'm training. I'll be thinking of Daisy any time the climbs burn and the laps seem endless. I plan to spend her next birthday in September of 2009 rafting on the Apurimac, just like we spent it in September of 2007!

June 23, 2008

Dear Friends and Family,

Flash:  My little bro's stem cells are in me!  I'm still breathing!...and so are Mom and Dad  (and Ben)!  That's what really counts. Here's what I remember and what I'm told happened (during the time I passed out).

Pre Treatment
Saturday, June 14th:  I was admitted to the hospital and given two days of high doses of a chemotherapy drug called Cytoxan.  For a "handful" of people in the world, Cytoxan has the effect of blocking the kidneys so that they don't pee-out the excess water in the body. I am among that handful, we found out, after the excess liquid buildup in my body diluted the salt level in my body so much that I went into seizures.  Monday evening my Mom was with me and I was in mid-conversation with an old friend from preschool, Sam McWilliams, who volunteers in the hospital, when I blanked-out and am told went into violent seizures.  I woke up later in the intensive care unit, rescued by an old and dear friend from high school, Molly Bonderant!  Last time I was with her we were having sledding parties and indoor-M&M wars.  I think it took me a couple days to sort of float out of the sedation and the experience of the seizures.  I recall things as being rather qwerky and slightly goofy. It could have been the drugs still at work on my head but I think it was augmented by the fact that I awoke Tuesday AM to one of the more amusing of the hospital night-staff-nurses and if a purple elephant appeared in the hall, I don't think it would have alarmed her either.   

Amazingly, I "floated though" Tuesday and Wednesday and didn't miss any of my irradiation "dates" at 8AM and 3PM every day, due to the seizures.  An MRI scan does reveal that my "beefy" muscled back and shoulders were powerful enough to put a hairline fracture in one of the vertebrae of my own back (unless they just dropped me while I was unconscious and I just don't remember?).  This is supposed to heal on its own.  I can move about fine, it just aches and I can tell my back is pretty delicate when I and bend and twist or roll around.

So, Monday through Thursday, I went twice a day to receive total body irradiation.  This was to kill my stem cells and the immune system in my body so that my body wouldn't reject my brother's stem cells when we squirted them into my bloodstream on Friday.   The theory being, my immune system, which was birthed from my stem cells in my bones, failed to fight the leukemia and that my brother's immune system, created by his stem cells CAN.

The irradiation experience was pretty yucky.  I mean, the process was made as clean and nice as possible by the people at the hospital but I was still scared shitless.  You have to surrender a LOT to stand up on that damn wooden frame without your shirt on.  The fear was mostly about what it actually was doing to my body and what kind of other issues it could trigger down the road.  The hope is that they will all be easily treatable problems, unlike the leukemia.  I'll almost certainly get early cataracts.  There's a 1-day procedure for that though which will fix it.  Hopefully it won't include thyroid cancer or another type of leukemia.   They say I'll be in menopause when the transplant's over.

The irradiation room looked like a fairly normal room with carpets and the standard hospital lighting.  The machine stood at its center, kind of a wide arm that stretched out into the middle of the room.  It had a window on one side, through which you could see some metal and an angled mirror inside.  The thing neither moved nor emitted light, though it did emit a most dreadful buzzing noise when it was turned on.  It was my role to come in, take off any metal I was wearing, take off my shirt and put on a clear plastic vest striped with Velcro.  It was to hold two lead plates about the size of your hand over the central part of my lungs.  Radiation at the 12gy level will destroy things like the elasticity of the lungs, so, for some of the treatments, these led plates were applied to give my lungs some protection.  As the subject, you stand on the wooden platform at one side of the room, under camera and microphone surveillance, steadying yourself between the two wooden railings.  Everybody scurries out of the room.  The foot-thick metal door closes and the loud buzzing starts:  a ten minute exposure to the front and then a ten minutes exposure to the back of the body.

What's it feel like?
It took a lot of surrender.  You think to yourself, "Oh, so this is what like military torture must be like…No! This for your betterment!  Control your thoughts.  It will be over soon."  Yes, that's how you think and you distract yourself by chatting via microphone with your monitors: trivia questions, music, chatting about nothing at all.  Then, finally the 8th visit was over.

Physically, you don't feel much.  You could almost convince yourself you don't feel anything, yet there was a sensation to it, kind of a small vibration.  I could feel where the invisible beam was, as it traced from my feet up my body.   Later, like a day later, is when you really start to feel the irradiation taking effect on your body.  Lying in bed I could feel it like the heat from a day-old sun-burn and movement, radiating, inside me.

Stem Cell Day!
The stem cells arrived, pink, and in little baggies and were thawed out in a hot water bath before they were squirted into my thick intravenous line which sticks out of my chest.  They were stored in some chemical which is absolutely nauseating and which still tries to creep up my throat and clings to my body.  Now, more than 48 hours after the infusion, it should be almost gone.  The cells went in, six fat syringes full.  They looked huge, at least from where I was sitting.  For me it was scary because my breathing tightened up a lot and it was hard to inflate my lungs.  I tried to stay as calm as I could and I was relieved that the infusion was finally happening but I was still scared about all the unknowns that it was hard for me to actually relax.  The nurse was actually surprised that it didn't make me cough or get a scratchy throat.  I guess that happens to some people when they're being infused.

Later that day I remember a sensation, as if the cells bonked against the top of the inside of my head.  I thought to my self, "That's strange. Yes, I guess I am a bit shorter than Ben," and then nodded off to sleep.

Many people who go though stem cell transplants call their infusion date their second birthday.  Now I have one at the beginning of summer, June 20th and at the end of summer, September 7th.  Just before strawberry season and just at the end of blueberry season and the beginning of apple season.  For the last two years, I've been on 3-day rafting trips on the Apurimac River in Peru for my birthday.  The Apurimac is the longest tributary to the Amazon River and has world-class whitewater as it threads though the bottom of a canyon thousands of feet deep.  There, with my buddies is where I want to be in September of 2009.  Camping on the sand, cooking fresh dinners with the best damn taters on the planet, watching condors soar above us, playing in the water and paddling for our lives.

For the next couple/few weeks
My blood counts are falling according to plan.  There are fewer and fewer little guys to fight infection.  I'm really starting to like my hair at this short length but the ½ inch that I have of it will fall out again in the next couple weeks.  My mouth just went gross.  It's full of mucus that strings off like the gaping jaws of a tyrannosaurus rex, as the little guys who generally keep things ship-shape in there have died and left it raw.  I'm so-far comforted by the fact that no foreign infecting monster has infected it yet.  Fevers and nasty stuff are yet to come but I'm just trying to stay on the positive and get though.  I've more than enough to occupy me from thoughts of possibly putting together a book to editing three years of travel photos, playing with beads, to just plain sleeping or chatting to friends online.

I'm not permitted to have guests, real flowers or anything fresh, though if people want they could pass by my big window to the outside that looks out on the North Entrance of the Dartmouth Hitchcock Medical Center.  My window is in front of the second of three little crab apple trees just to the right of the North Entrance.  If my shades are drawn or I'm not there, sorry, I'm showering or getting a massage or something.  Please don't feel like you need to pass by though.

I'm told a web page is being put together for those wishing to help my family out and I'll email out that link as soon as the page is put together.  Mainly I think it will be for things like helping Mom and Dad by picking up the recycling and the garbage on Saturday or contributing a meal.  We'll see what happens.  Also, as I mentioned in my last update, my good friend Crystal in San Francisco (whom I met trekking and rafting and dancing in Cusco)  is "Racing for Daisy!" doing an Olympic distance triathlon to benefit the Leukemia and Lymphoma Society.  You can scope out the details and get involved if you choose.  There's also a recent picture of us!  http://pages.teamintraining.org/sf/pactri08/cenglish

Thank you so much to every one who's pitched in, from joining Sunday's healing circle, to sending me treats that make me smile and/or enrich me or sending me words of encouragement…know that IT'S ALL WORKING!  It'll still be a couple weeks or so before I get out of here and probably a year before I get back to Peru but I hope to be dancing salsa soon and still hoping for full recovery.

So, dance, climb mountains, take bike rides, go swimming, eat fresh strawberries for me and make sure you're getting lots of fun in.

Mucho amor,

Daisy

Comments

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Many people who go though stem cell transplants call their infusion date their second birthday.

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