well, that was a nice 48 hours at home. i managed to post some pictures from colorado on facebook but haven’t had a chance to upload them to a non-facebook gallery. but you’re all on facebook, right?
one of my bestest friends in the whole world is getting married this weekend and i will get to see lots of people from high school and the bay area and more. plus i get to hang out with my grandma. i wish i still had the picture i took of her reading playboy at my grandfather’s old-school barber. this actually happened:
it may not smell as sweet as the rocky mountain air, but it’ll do for a few days before heading out to california.
camp was amazing, a totally transformative experience. i have some writing to do this morning but i’ll get a full report posted this afternoon. i’m still waiting for the link to the pictures our photographer took on the water, but i have a few from the camp that are worth checking out.
thank you so much again to everyone who helped get me to camp! it was a much-needed break from everything.
it is so beautiful here. we’re at 8800 feet – there are chirping bluebirds, magpies and the soft sound of mountain air blowing through camp.
we spent the morning in kayaks practicing how to roll, playing water polo and getting comfortable with the different paddle strokes. i’ve done a lot of lake kayaking and the river stroke is a lot shorter – i end up going in circles a fair amount, but hopefully by the time we get on the river tomorrow i’ll be straightened out.
my camp nickname is spiderman – someone thought i looked like tobey maguire. the people here are wonderful and have suffered through an amazing array of horrifying treatments – “hard to kill” has seven titanium vertabrae. there are a number of lymphoma survivors – we’ve all gone through our survivor stories, full of endless rounds of chemo. just about everyone has massive scars, though my shoulder spot (almost closed!) has gotten some special attention.
we’re taking a nice easy afternoon in part to adjust to the altitude. playing polish horseshoes, getting to know the horses, some light fishing. it’s a good life.
thanks everyone for sending me lots of loving notes etc. it’s been a really rough couple of weeks and i appreciate it.
a few people have sent in bracelet pictures in support – here are a couple of my favorites!
i leave tomorrow morning for colorado – not sure if i’ll have service up there, so this may be the last post for a while. i come home sunday the 15th. a big, big thanks to everyone who helped me cover the costs of the trip!
it’s going to take a few days to get the results of the blood test today to check my hepatitis viral payload – once we know that, we can figure out next steps. in the meantime, we’re going to wait to start the BRAF blocker trial until i’m home from california in late august. these tumors aren’t life-threatening so a few weeks won’t make a huge difference. plus there’s a ton of pre-screening tests that i have to get done before i can start the trial – another PET/CT, a brain MRI, eye exam, dermatological check. it’ll probably take about a week once i get home, so i should be starting the new trial around the first week of september.
i gotta say, i’ve tried to be prepared for anything, but the last 10 days or so have really thrown me for a loop. it’s hard to stay sane with these constant curveballs being thrown at me. i try not to email out to the groinstrong newsletter list until it seems like the path has been set, but now it’s all been reset overnight. i’d just like a little stability. but i guess that’s too much to ask right now.
well, that strategy was short-lived. i’ve just received a call from my doctor letting me know i have hepatitis C, and that moving forward with ipilimumab could destroy my liver. so we’re going to start the BRAF blocker trial instead. unfortunately the BRAF treatment is weekly, so i can’t start it until i get home from california in late august. i’m going in to the doctor tomorrow to take a closer look at the virus level of hepatitis present in my system, so we can have a better idea of the potential treatments for that. i’ll post again tomorrow once i know more.
So the spots are sadly not “intestinal freckles” – they are more melanoma. We’re starting a trial infusion of ipilimumab on Thursday – when I get home I’ll have a chance to let you know more.
as many of you know, i’m in the process of turning my story of cancer survival into a graphic novel. i think the visual medium will give a great visceral feel to the story – i can tell you that i have a bulb that drains fluid out of my groin, but a drawing of it really drives the impact of the image home. my friend suerte has volunteered as my artist – he’s an incredibly talented painter and tattoo artist, not to mention the author of a graphic memoir. check out his impressive gallery here. if anyone in the new york area wants a tattoo, get in touch with suerte.
as part of the planning process, i’m consolidating groinstrong into a single, bound document – it’ll end up being hundreds of pages by the time i’m done. in reading through my entries from my very first surgery in may 2008, i was struck by my boundless optimism and manic enthusiasm. i’d forgotten that i used to post a half-dozen times a day! the last couple years have worn me down a bit – only understandable, i think. it’s been a long haul. but i’m so glad to have the record of my experience. i’ve never been a very effective journaler, and there’s something powerful about being able to reach into your past and see what’s there. in one entry i complained about having to wait two hours at the doctor – my, how that’s changed. i thought that my time roughing it through africa had taught me patience, but i have achieved a whole new level of understanding. the world does not bend, no matter the frantic tugging. i have my crosswords, and my comic books, and when the world is ready for me, then it will be my turn. what a waste of energy to fight the natural way of things.
hey friends – thanks for all the birthday wishes! this surgery took more out of me than i expected, and i’ve spent the last couple days sleeping it off. it’s so nice that i’m able to get some rest when i need it.
maybe i should take a walk to wake up. i wish i could walk like this:
i wish i was out hiking somewhere, but i’m pretty exhausted after the surgery. moving veerrrrrry slooowly today. i did make it all the way to the library on the corner – but now i can’t stay awake to read! oh well. i think it’s going to be a low-key day. i have an appointment for monday august 2nd – hopefully we’ll have the biopsy results by then.
30 used to be scary, you know? but this potentially terminal illness dramatically transformed my sense of age and time. now i’m just happy to be alive. bring on another year!
