GROINSTRONG

PET/CT scan this morning – which means a morning of trashy TV. Yes! One more appointment next week with the eye doctor and I should be good to go for the trial starting September 13th.

Just finished up at the doctor. We’ve decided not to treat the Hep C for now, since the viral load is so low. We’ll keep an eye on my liver and we might even do a liver biopsy (which I’ve heard is unpleasant). But for now I dodge that bullet. The only problem is that my doctor has advised me to never drink again…. Ouch.

The screening tests for the trial will take a couple weeks, so it’s looking like I’ll start Monday the 13th. I’ll be on the drug indefinitely as long as the side effects are manageable – they’re not supposed to be so bad.

The first of the tests for the trial start today – I’m waiting for an echocardiogram. Six hours so today at the doctor… It’s going to be a long week

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.

I am in a ton of pain but a wonderful, generous, kind friend is picking us up and us home. It’ll be nice to be back in our room and out of the cold, sterile hospital – though I’ve heard the heat index is at 105 degrees today, so actually the cold has been nice. Still, I am overjoyed to avoid a full weekend here!

I’ll be pretty laid up for a while if this pain persists, so if anyone wants to come over for a visit tomorrow or Monday just give me a ring. I think it might be time to hook up the projector!

Hey folks! Sorry about the delay in posting – the surgery took much longer than expected and by the time I got out, my phone was dead. But now I can finally tell you what has happened.

After waiting over four hours to get into the OR, they finally put me under and cut me open…

And they quickly discovered a half dozen lesions similar to the initial known site. I was just coming out of aenesthetic when my surgeon explained where exactly they were, so I don’t remember exactly – but they’re in a section of my intestine.

But here’s the crazy part: none of them tested positive for melanoma!! I’ll have to wait another week for the full pathology to make sure, but the mid-operation biopsies didn’t find any cancer.

We had established early on that if they opened me up and found multiple sites, then they would leave it all and we would turn to systemic treatment like chemotherapy. But what about multiple non-cancerous sites?

Now, if you’ll remember, we found the first lesion via the camera pill – which means we weren’t able to biopsy it – which means it could be benign as well – which would mean there’s a good chance I AM STILL CANCER-FREE!!!

What?!? I know, right?!? I’m trying not to get too excited, because we still have to wait for the full pathology report.

But regardless of the final outcome, because they only made surface incisions, I get to go home tomorrow!!! How freakin awesome is that?!? I am in a very very small room and it would have been an awfully long weekend in here.

Thank you again for all the wonderful messages of love and prayers and atheist thoughs of support (devon )! I’ll let you all know when I’m home safely.

2:15 and we’re still waiting for surgery. I am SO hungry, and thirsty, and I have a dehydration headache. Also, I forgot that hospitals are full of pain and people crying and looking scared. I hate it here already.

I wonder what the long term effects of all these scans will be. I’m waiting for another PET/CT scan – we want to make sure that this intestinal tumor is the only existing spot. For the scan they inject me with a radioactive glucose – I think I’ve done this a dozen times. If I manage to beat melanoma, it’ll be interesting to see how my health holds up after being poisoned for so long.

So we’re moving forward with the surgery. It’s going to be this Friday and then it’ll be three or four days in the hospital to recover. Good chance I’ll spend my birthday there. Gross.

We got the mother and her kids/ we got the guy and his date/We all get mad, we all get late/Looks like somebody forgot about us/standin on the corner, waitin for the bus….

Ah, the violent femmes. It never gets old. I’m taking full advantage of the B71 bus before the MTA takes it away forever. Stupid budget cuts.

So I spent the morning with WCBS talking about state legislation that would ban minors from tanning salons. I’ll be on the local 11 ‘o clock news tomorrow night! Hopefully there will be an online version I can embed here.

No melanoma inside me! That’s a good thing. Hopefully now we’ll be able to figure out what is causing these symptoms. Next up: the futuristic capsule endoscopy a.k.a camera pill.