GROINSTRONG

well, that didn’t feel very good. the doctor actually missed my liver the first time, so he approached a second time with the eight inch needle covered in blood. that’s something i didn’t really need to see. i’m back at home now and resting mostly comfortably. i should have the results by the end of next week. enjoy the long weekend!

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:

“grandma, you’re not supposed to read that!”

“it’s ok. i don’t read the articles.”

see you out west!

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.

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.

good god this gets old.

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:

Walking Across America – Watch more Funny Videos

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!