Archive for the ‘hospital visits’ Category

the camera pill

Friday, June 25th, 2010

ok, here it is, folks. the pill camera, in all its glory. and some gratuitous partial nudity. gotta show off the data belt! thanks to dr. rosenberg and dan f. for being good sports and taking pictures and video.

the pill is equipped with a strobe light (see video) that flashes a couple times every second and takes a picture as it goes. let’s say twice a second on average, for eight hours before the battery loses its charge. that would mean the doctor now has over 57,000 pictures of my insides. that’s pretty rad. the pill transmits data to the belt, which uses the connected pads to determine the approximate internal location of the pill.

it was about 95 degrees yesterday and i had to wear this damn thing for eight hours. not pleasant. interesting, though, that i walked through grand central with a blinking belt with wires bulging from my waist and wasn’t questioned. also unpleasant was returning the belt and taking the pads off my skin. the nurse said i did well not to cry, as she has seen with the more hirsute among us. still, i get to return the belt, and dispose of the pill, which is much better than having to return the pill.


hot.

i’m… hungry… so… hungry

Thursday, June 24th, 2010

i usually do just fine with these pre-test fasting days. but maybe it’s the heat, or the fact that i worked last night, but i could really use a chewy new york bagel covered in lox or whitefish salad. ok i have to stop talking about food.

i’ll be out and about today with my data belt. and you thought fanny packs looked dumb! i’ll take lots of pictures for everyone.

and, now this. i couldn’t resist.

the bug inside me.

Thursday, June 10th, 2010

hi everybody (hi dr. nick!) – so it turns out i have a parasite called blastocystis, which might be causing the symptoms i’m trying to manage. but a lot of people (and animals) carry blastocystis around without any trouble. so today i’m getting a dual endoscopy to take a look at my insides and see what’s going on. i’m a little nervous about this one, since the symptoms have been markedly similar to when they found tumors in my stomach and intestines last year. but we’ll just have to wait and see.

don’t worry, i’ll post through my aenesthetic haze and it will be funny. though probably not as funny as this:

two years.

Thursday, May 20th, 2010

last night my wife and i celebrated the two year anniversary of our relationship. i’ve got to say that celebrating at the new location of hecho en dumbo (no longer in dumbo) was a special treat – we truly received the royal treatment! and good god the food and drinks are amazing.

what a roller coaster these two years have been. i don’t know what i would have done without her. my friends and family have been endlessly supportive, but at the core of it all has been kathryn.

kathryn as miss fortune

on our third date, i brought her flowers. and i told her that my cancer had spread, that my chances of survival were slim and that it didn’t seem fair to start a relationship in that state. i don’t care, she said. i’m with you one hundred percent. as my late friend in tanzania used to say: tukopamoja msili mia mia moja – togetherness, we are, one hundred percent.

she was there, on our fourth date, at the hospital, to meet my parents for the first time as i watched through lidded morphine eyes. she kissed me goodbye and i said “kissing you makes me want to throw up.” i was not feeling very well. and then, as she walked away, i told her for the first time that i loved her. what does an admission of love mean when morphine is involved?

she was there as i crutched and caned my way through this not especially disability-friendly city on my surgically destroyed legs.

she was there when the tube draining lymph out of my groin popped out and a kool-aid-like red-orange fluid spurted out of my body.

she was there when that hole was sewn shut and the fluid swelled inside me like an alien baby growing on my hip; she was there as the fluid was lanced again, and again, and again.

she was there when a bout of cellulitis brought on a fever that spiked 106 and they laid me on a bed of ice to prevent brain damage.

she was there for every single infusion of chemotherapy, and she was there as i tossed and turned every night afterwards, the evil, panic-inducing steroids coursing through my system, preventing me from any kind of rest, day or night.

she was there for all seven of my inpatient hospital overnights, for the 5 am shots of heparin to the belly, for the tortuous hours with my abusive roommate who eventually required a mediation team to prevent him from making any other nurses cry.

she was there for the hours of bowel-cleansing horror that is colonoscopy prep – actually, she wasn’t there for that. which was a good thing. but she was there for the endoscopies, upper and lower and the one with the robotic, strobe-lit camera pill.

she was there for the days between my scans and the results, the waiting periods full of uncertainty and terror.

she was there for month after month of bad news, watching helplessly beside me as my cancer meandered on its deadly course through my fragile body.

she was there for every moment of pain and doubt, every moment of weakness and fear.

and she was there, and continues to be there, as we celebrate my reprieve from treatment.

after my mom met kathryn, she said i was a fool if i let someone so special get away.

mom: i’m glad i took your advice.

tukopamoja msili mia mia moja.

milele. forever.

exploding shoulder

Monday, April 5th, 2010

my shoulder is actually doing quite a bit better today. the irradiated skin is looking much more like skin and less like a purple stain. the open wound in the middle seems to be stabilized, although it will still be a while before it closes up. i’ll be back at the doctor on wednesday to check in and make sure that it’s progressing as it should.

meanwhile, another entry into the contest from captain quinn

great shot, kid. that was one in a million.

great shot kid

anesthesia party

Monday, March 22nd, 2010

i’m having an endoscopy early tomorrow morning – the first step in proving that i am now cancer-free! kathryn can take me to the hospital before work and get me into a cab after the procedure, but i’m wondering whether anyone is in the hood tomorrow afternoon to come over for lunch. i can promise you hilarious times as i babble incoherently and ask when the procedure will be!

speaking of procedures, what do you all think of the health care overhaul? i’m glad to hear so many millions of people will be insured, but haven’t taken the time to read the particulars. i just hope it’s not a multi-billion dollar boondoggle that ends up lining the pockets of the insurance and pharmaceutical industries with taxpayer dollars.

stitches out!

Wednesday, February 3rd, 2010

i finally got my stitches out this morning. because of my trip, the removal was delayed and the surgeon really had to dig deep to get them out. but the incision looks good. i will take a picture of the new scar once the steri-strips come off.

i am so tired! i forget, you know, what it is like coming back from the west coast. that getting up at 7 is actually 4 in the freakin morning. at least there was some pretty snow on the trees.

also, i watched lost last night. i had never watched it before. you know what? that show makes no sense.

the latest

Wednesday, January 13th, 2010

The surgery today went well, better than we had expected. My right arm is slowly recovering, and my left hand is sore from the post-surgical IV fluids. But so far the biopsies of the resected lymph nodes have all come back negative, with no sign of melanoma! It looks like the nodes were only swollen and not cancerous. I should have a full pathology report by Friday, but for now we are cautiously optimistic. I’m not ready to mention the R-word yet.

This morning I received a tearful, emotional apology from my surgeon. The explanation for the missed spot is that they wanted to move quickly before the tumor could grow any larger, and because the lymph nodes did not contain cancer, they did not show up on the scan. It was only late on Friday when the MRI specialist thoroughly reviewed the results and noted that the lymph nodes in my armpit were swollen (most likely because of the size of the tumor on my shoulder) and dangerously close to the brachial plexus. My surgeon said it was torture to have to call me back in for another surgery, but she is confident that it was necessary.

My follow-up appointment with my oncologist will be next week on Tuesday the 19th, and I should have a better idea of the long term strategy at that point. After a few weeks of healing, it looks like I will undergo six weeks of radiation. For now, I am dealing with two sensitive and painful incisions and a phantom itch underneath the surgical site numbness that is absolutely maddening.

In non-cancer-related news,you all know how important Kathryn is to me (she’s the best!). Next week, Flights of Fancy, a dance piece which she choreographed is being performed at Spoke the Hub, a performance space in Brooklyn. It tells the story of lowly pigeons dreaming of life as more exotic birds – the costumes Kathryn made are spectacular! You have all been so supportive of me – for those of you in the New York area, this is a chance for you to support my number one supporter! The piece is being performed at 7:30 PM on Friday, January 22nd and Saturday, January 23rd. Tickets are available via phone (718) 408-3234 or at the theater on the night of the performances. After repeated viewings, I am still amazed at the engaging spirit and creative energy in the piece – I highly recommend it (of course I am biased!) and would love for you to join us.

Thank you all for the meals and love and support over the last exhausting, harrowing week. I have managed to make it through only because of all of your good graces and generosity. Speaking of which, the Groinstrong store is up and running again (now through Google Checkout, not PayPal) if you’d like to make a donation to help with my continued medical expenses.

endoscopy day

Monday, August 31st, 2009

at least it’s not colonoscopy day.

i’m listening to bach – cello suites. seems like a nice way to warm up for someone putting a camera down my throat.

they’re going to check out the spot in my stomach and see how it has responded to the last few months of chemo. i am impatient to get the results. i haven’t had a progress report since may, which seems like forever ago. i’m hoping that i get at least preliminary results today but i’ll probably have to wait until wednesday. and the waiting is… well, you know.

i’ll keep everyone posted of course. y’all know how much i love to post while i’m in the hospital. especially post-aenesthetic!

in the meantime, my good friend jon is running the new york marathon this fall to raise money for the all-important (seriously) american cancer society. he’s also dedicating his run to the groinstrong movement (i guess that’s me). he’s already well on his way to his fundraising goal of $2500 but please consider supporting his efforts. his personal fundraising page is here. thanks!

oh by the way

Thursday, August 6th, 2009

You know why the ER was so crowded last night?

It wasn’t the full moon. Although that couldn’t have helped.

It was because the closest ER at Bellevue was ON FIRE!