calendar for hospital visits and meal assistance

May 18th, 2012

Well, here we go. I’m scheduled to arrive at 10 am tomorrow, with my surgery taking place at noon. I’ll have Kathryn post an update as soon as we’re through. Cell phone use is discouraged in the waiting room, so please be patient! Without any unexpected complications, I should be through the operation and moved to my room by the late afternoon.

In the meantime, I wanted to explain the process for scheduling hospital visits (and later, meal support and visits back at home). I’ve set up a custom schedule using carecalendar. All the login information is below – as this post gets pushed down the page, you can find all the information near the top of the right hand side of the page under “Visits and Meal Calendar” – if friends ask for visiting information, you can forward that link to them. It can be a little hectic trying to field calls and answer messages to set up visits, so I’m hoping this system helps smooth out the process for all of us! If you’re far away or unable to visit and would instead like to offer your financial support, you can do so by visiting my donation page.

Instructions for CareCalendar scheduling

First, visit my personalized calendar here:

http://www.carecalendar.org/logon/112717

For Calendar ID, enter 112717

For Security Code, enter 7864

Once you log in, you’ll see the calendar page. Empty slots are listed in red – expected in-hospital days are broken up into hour-long slots during visiting hours (10 AM to 8 PM). Click on the date that appeals to you – note: once you click through, you’ll see which hour you’ve selected; if that slot doesn’t work for you, simply use the back button of your browser to return to the calendar.

Please be sure to carefully read the details, as they include important information about the location of the hospital, room number, etc. After you select your preferred date and time, you’ll be asked to enter your name, phone number and email. Give as much information as makes you comfortable, though email is important. A confirmation of your selection will be sent both to you and to me.

Isn’t that so great? I hope the process works well for you. Thank you in advance for taking the time to stop by or to provide a meal! Your generosity and dedication have played such a crucial role in making this exhausting experience slightly more manageable. Kathryn and I both are filled with awe at the way that our community continues to support us in remarkable ways.

See you at the hospital!

Posted in events, gifts, gratitude, hospital visits, links, pain | No Comments »

the luxury of knowledge.

May 17th, 2012

in twenty four hours or so, i’ll wake up from my surgery. i can’t say i’m looking forward to it. still, it’s a great luxury to have the chance to properly prepare. so many of my recent hospitalizations have come out of nowhere – i spike a high fever and spend five days in the hospital fighting off an infection, or i arrive to the ER with (this actually happened) dual infections of both viral and bacterial nature AND pneumonia. yeah, that was not very fun – although my infectious nature granted me a private room. talk about luxury!

this time is different. i’ve known this surgery was a possibility for years. i have time to make sure all my bills are paid, that nothing will fall through the cracks while i’m out of commission. i’ve been hard at work setting up a custom care calendar, so those who’d like to visit or be involved in post-surgical support can use an online scheduler. i’ve got cookbooks for blended food and people are already sending recipes. people are sending me immersion blenders! (mystery solved: thanks, jess schoen!) also, i have an ipad. all is well.

i’m on way to one last afternoon of bridge before they cut me up, but i’ll get all the information about the support calendar posted tonight. thanks so much for all of your kind words and messages of encouragement. i’ve met a number of young adult cancer survivors who are not only far away from any family but also lack local extended networks of friends. i can’t imagine having to manage the pain and complications and insufferable side effects and financial toxicity without all of you. you are seriously awesome. you are a luxury.

Posted in gifts, gratitude, hospital visits | 6 Comments »

the mystery of the unknown blender…

May 16th, 2012

yesterday afternoon i received a package from amazon. the company, not the rainforest, obviously. no poison dart frogs here!

though we have many tools that will aid in my upcoming liquified diet – cuisinart, blender, juicer – we forgot to add an immersion blender to our wedding registry, and we’ve pined for one since.

and amazingly, this mysterious box held a gorgeous immersion blender. in groinstrong hot pink, no less!

to add to the intrigue, the package included no card, no information about the purchaser, no note to explain its origins.

if you, the donor, would prefer to remain anonymous, i understand. but if this mystery was unintentional, and amazon forgot to slip in a card from you, please let me know! i would like to thank you appropriately.

my friends on facebook saw this already, but i’m going to repeat it regardless:

what a curious incident. you might say i’m… immersed in the mystery.

heyo!

Tags:
Posted in amazing, gifts, gratitude, images, love, puns | No Comments »

that’s entertainment!

May 15th, 2012

many of you have experienced that when i get excited about something, i get REALLY excited. like uncontrollably excited. i’ll interrupt anything you’re saying, regardless of topic, to share my enthusiasm. yeah, i’m working on that. but i wouldn’t want to temper my crazy love for anything and everything.

so today i would like to share my excitement and give a shout out to our friends michael and zach. i feel so blessed that kathryn started a friendship with them many years ago – we’ve had some wonderful adventures and shared some of our most meaningful times together. michael and zach are among the top contenders for the most generous people i’ve ever met. they may just take the prize altogether. they helped us manage getting to coachella two years ago (my first ever music festival). they’ve invited us multiple times to the bloomberg company’s annual summer party (the company rents out randall’s island for a massive fair with free food and drink, live music and carnival games and so many amazing things!! it’s SO fun!!). last year we all traveled to vermont so they could be legally married – kathryn was deputized for the day and performed the ceremony, while i became the artistic director/wedding band/photographer. it was a marvelous, magical trip, and we could never have joined them without their generous help. and when i tore my ACL 100 yards into my first run of the weekend (booo!), they paid my hospital bill (yay! i paid them back eventually).

we’ve been lucky enough to dog-sit numerous times for their lovable, spazzy boston terrier, pugsley, and we’ve used every opportunity - birthdays, holidays, anniversaries – to slowly adorn their apartment with endless images of pugsley and his ilk. i met kathryn outside their old apartment for our fourth date, having recently received a grim prognosis from my oncologist. we were terrified and weepy and loving and caring far beyond the norm for a new relationship. we were able to enjoy the comfort of a cuddly dog, cable TV, lots of guitar hero and views from their old place, a penthouse on houston looking up the length of second avenue. in fact, that moment was one of the few we chose to celebrate in the art project for the wedding that so many of you helped us create. our friend jordan captured the moment beautifully (see right).

it’s such a gift to have friends that love to share so deeply and expect nothing in return – though of course we do our best to wine and dine them when we can. last night we had them over for a delicious dinner (kat and i made szechuan/five-spice pork tenderloin, mashed parsnips and kale salad with toasted almonds… mmmm!). at some point during the meal, i asked michael if he would be willing to bring me some comics while i languished in the hospital. he apologized and said that he was only getting digital comics at this point, then paused and realized his old ipad still had hundreds of comics, and since he’d just gotten a new model, he didn’t need it any more – so he offered to loan it to me while i was convalescing. woohoo! but wait, it gets better. we talked about how awesome it would be for me to have the slim ipad instead of my usual messy stack of comics spread across what little space i call my own – i tend to explode my belongings all over my tiny curtained “room” – and a moment later, he asked, actually, do you want an ipad? my answer was OH MY GOD YES I WANT AN IPAD!!! i seem to remember raising my arms in triumph. because, man, i have wanted an ipad SO BAD and i love new toys and i love having distractions from so many days in the hospital! those long, boring days and the even-longer nights can drive me crazy, and it will be such a gift to have so much entertainment in such a small package. (i can’t resist: that’s what she said!)

so thanks, michael and zach, for everything you’ve done to support me and Kathryn, for all the wonderful adventures we’ve had together that would have been impossible without your help. thank you for being in our lives, and for sharing yours with us. i know kathryn cares deeply for both of you, and i’ve grown to feel the same way. you make it so easy!

love you guys!

Tags: ,
Posted in amazing, art, gifts, gratitude, hospital visits, images, love, travel | 2 Comments »

the other side of sunday.

May 14th, 2012

that being monday. it’s late into the night, or early in the morning, depending on how you’re feeling. me, i’m feeling a bit insomniac-y. not too surprising, i’d say, given what the week holds in store.

the surgery is scheduled for friday, though i won’t know exactly what time it will take place until late thursday afternoon. last week i spent four hours in pre-surgical testing – reviewing my medical history takes an awfully long time – and the nurse practitioner warned me that recovery from bowel resection can often involve lengthy hospital stays for extended monitoring; a full week would not be unusual. that’s an awfully long time in the less-than-pleasant atmosphere of the 16th floor oncology unit, no matter how wonderful the nurses and attendants may be. and they are wonderful, kind and caring, but they still have to put me in a shared room (always a crapshoot) and give me shots of heparin to the belly at 5 am (always awful).

to add to the unpleasantness of this particular recovery, it’s likely that i’ll wake up from surgery with both a feeding tube and a catheter. they shouldn’t remain in place for more than a day post-procedure, but that doesn’t make that initial return to consciousness any less painful or uncomfortable. i’ve never had a feeding tube before, though i have suffered through a catheter. i can’t remember at the moment whether i’ve shared this story, but it’s worth repeating – after one of my many procedures, i was having terrible trouble urinating, and the nurses gave me an hour to pee or else they were going to reinsert the catheter with only a small dose of local anesthesia. how’s that for pressure? i was terrified of the possibility but struggled in vain. my parents and kathryn gathered at my bedside and began to sing songs about water. the beatles’ rain. the melodians’ rivers of babylon. did they sing row row row your boat? perhaps. i seem to remember the song that finally helped me fill that small plastic urinal was jimi hendrix’s may this be love [aka waterfall - sorry, the best clip i could find was daniel lanois' cover - still worth a listen]. hopefully i won’t need another making-water medley.

my surgeon is mostly sure that he can perform the procedure laparoscopically, though there’s a chance that my attempted bowel surgery a couple years back left behind scar tissue that could interfere. if the robots can’t find a way in, they’ll have to make a midline incision (don’t worry, the link just goes to a graph – but you can always image search it yourself if you’re feeling gruesome). i’d like to avoid the larger incision, obviously – getting opened up that way would dramatically increase my healing time as well as the amount of pain i’d suffer. when i wake up, tubed through various orifices, i’ll find out immediately what access strategy my surgical team utilized.

in the meantime, i’m doing my best to enjoy myself and stay as healthy as possible. i’ve started seeing a chiropractor whose office also offers massage and physical therapy in a single visit – even though their office is in midtown, it’s worth the trip. the physical therapy in particular is making a big difference in reducing my pain and increasing my flexibility and range of motion – the many surgeries to my left leg have made it markedly shorter than my right, causing all kinds of imbalance and pain. we’re working together to try and straighten me out again. i’ve also found an acupuncturist – i emailed him with my sob story and billy, quite generously, offered to see me for free, for as long as it’s helpful. generosity like that is so rare, and i’m incredibly touched that he is so willing to help out. if you’re looking for a brooklyn-based acupuncturist, billy is great! i doubt i’ll be able to stomach (ha!) the effort necessary for any of those treatments post-surgery, so i’ve got a busy week trying to cram it all in before friday.

my acupuncturist is not the only person for whom i am grateful – i’ve received so many heartfelt messages of support, donations and books to read and offers of visits, blenders and baby food cookbooks. kathryn found a site that automates the process of scheduling meals and visits for those in need (aka me!), and i’ll let you all know when i have it set up. i know it’s a less personal method of managing the ways that you can help, but man, you all love me so much! it’s helpful to be able to space out your support and not burden me or kathryn with constant planning. i know you all understand.

one last thing, if you’re still reading this over-long post: mother’s day has come and gone, but i want to take a quick moment to acknowledge moms. and not only my wonderful, dedicated mom, because she is the best – she’s coming to help out and hopefully get me home from the hospital after the weekend. but now, being in my early 30s, so many of my friends and peers have become mothers, and it is such a marvelous joy to see these young mothers, to celebrate with them, to be a part of their lives whenever possible. i would love to spend the summer traveling from family to family across the country – seeing beloved friends and their children i have yet to meet, dash in the tower especially; seeing godsisters and godchildren and nieces named mabel; the twins in arcata; babies in oakland, omak, charleston, austin. kathryn and i have had to delay our family planning plans; i have to be a full year free of any treatment before we think about it, and even then it’s more than likely that i’ve been sterilized by the years of chemical onslaught – i’m so grateful that my oncologist suggested a visit to a sperm bank before i started any treatment. in the meantime, it gives me such pleasure to join with you in celebrating the miracle that so many of you have brought into the world. well done, mothers of the world.

Tags:
Posted in amazing, chemotherapy, events, gratitude, hospital visits, images, links, love, music, pain, physical therapy, rock and/or roll, videos | 3 Comments »

view with caution

May 7th, 2012

i haven’t had a chance to put together our pictures from the wedding this weekend, and this is definitely not the kind of image i was hoping to share today. it’s so graphic that it doesn’t seem fair to you viewers to force it upon your tender eyes. i have a large, ugly mass growing in my jejunum, where my small bowel meets the stomach. i like to call it my (je)june(um) bug – if you’re feeling brave, you can click here to see the graphic endoscopy results. the light pink is the healthy tissue – that gross pile of bloody mess is obviously not. it’s dangerous enough that it has to come out – it could cause bowel perforation or obstruction, both of which would not be very fun. and we need to move somewhat quickly, so my bowel resection surgery is scheduled for next friday the 18th of may. if all goes well, i’ll spend 3-5 days in the hospital, 2 weeks of eating soft food only and 4-6 weeks to more or less recover. it’s a pretty busy time for kathryn, so i’ll be calling yet again on those of you who have some time to come and visit and put my steak in a blender.

in the meantime, i’ll find some time tomorrow to tell you all about our lovely weekend in nashville and the wedding of scott, kathryn’s eldest brother, and his wonderful new wife laura. it was close to the hottest ever start to may down there – i’ve never sweat through my tie before – but the heat couldn’t keep us all from having a fantastic time.

weird, kathryn just pointed out that i had another major surgery two weeks after her other brother doug was married back in 2008.

good thing she’s all out of brothers.

Tags:
Posted in hospital visits, images, love, travel | 4 Comments »

i second that emotion chart

May 2nd, 2012

i’m finally coming back to life a bit after an exhausting start to the week. i had a whole slew of appointments and meetings scheduled yesterday and monday that fell by the wayside. i was especially disappointed to miss the first session of my new drawing class, but given that the creative center caters to people with chronic illnesses, they understand when life gets in the way. still, i hate having to make sacrifices when fatigue or medical responsibilities demand my time. such is life.

and my energy is returning just in time, as we leave in a few short hours for scott and laura’s wedding in nashville! kathryn’s eldest brother – and her whole extended family, really – has provided both me and kathryn with much-needed support ever since we started dating – the anniversary of which coincides with the anniversary of my diagnosis. it’s been four years now! it’s a little intimidating to be staring down a busy weekend when i’m feeling so run down, but i’m sure all the love and wonderful company will help me rally.

i saw this chart posted recently on xkcd and had to share it. though the variables and timing are off, the sentiment is awfully accurate.

Posted in cartoons, complaining, events, images, travel | No Comments »

status: it’s complicated.

May 1st, 2012

i am a little tired at the moment. you see, i’m missing a bit of blood.

that is 22 vials of my blood, drawn for comprehensive tests on my liver. so i think i’m entitled to a little nap.

but before i crash out and lose another afternoon to fatigue, i wanted to make sure to get us all on the same page.

first, i hope your may day has been lovely, whether you’re celebrating in the twin cities or working your way through holding cells after occupy protests. my present insurance is through kathryn’s union, and the policy has saved us thousands of dollars, if not tens of thousands, since we were married. so, i like unions, and i don’t mind if protests interrupt my day. though i’m grateful i was able to travel freely today.

as business wound down on friday, my doctors switched the upper endoscopy to a dual procedure. so my sunday, instead of badminton in the park, was rather less pleasant. although at this point the colonoscopy prep is old hat for me. still, it’s shitty. heyo!

the endoscopy found a “large” lesion of melanoma in my small bowel. i don’t know what “large” means in my GI doc’s report, but she’s recommended a bowel resection. i’m meeting with my oncologist next week and then my GI surgeon the week after, and at the moment i’m leaning toward avoiding surgery. as my GI surgeon pointed out the last time we found ourselves working with intestinal tumors, we could cut the lesion out, with all the risks and discomfort that come along with bowel resection, and a week later we could find another cancerous lesion an inch away from the previous resection. again, in my GI surgeon’s words, it’s a local solution to a systemic problem. of course, i’m not rushing in to anything, and i need a lot more information about size, location and potential complications if the lesion causes bowel obstruction or perforation.

on top of dealing with all of that, i spent the morning with my new hepatologist to talk about possible treatments for my hepatitis C. we’re trying to get as much information as we can before deciding on a course of action – as i’ve heard, the hep C treatments are still pretty nasty, even as their success rate have skyrocketed (from 20% to 80% cure rates). if we can get my liver to stabilize without dramatic intervention, it might allow us to move forward with the IPI, which could possibly get rid of the lesion, which would mean the surgery would be unnecessary.

you see what i mean when i say it’s complicated.

so to get more information, she took about a pint of my blood (i think she’s a vampire doctor) and ordered an MRI of my liver. i was able to fit in the MRI this afternoon, and now i’m finally home. i’ll have more information in a couple weeks. my hepatologist hopes that we can avoid treating the hep C as long as possible – it’s a year of treatment, and there are new drugs currently in clinical trials that are showing great promise without as much toxicity. i asked about my possible participation, but patients must be five years cancer-free. so that’s out for now, but if all goes well they’ll be available soon.

that was an awful lot for just two days. i’m sitting down with my oncologist next monday to talk through all of this. but for now, i’ve been poked and prodded inside and out, emptied of too many bodily fluids, injected, examined, put inside a jackhammer and sent home.

it’s time to rest for a bit.

Posted in clinical trials, hospital visits, images | 3 Comments »

(some of the) pictures from austin

April 27th, 2012

kathryn and i are about to head off to a weekend in westport, but before i go, i wanted to share some pictures from my visit to austin. these are on facebook already, but most of the people featured herein are not members… weird… the bachelor party pics are still in development, though i’m not sure they’ll be allowed to see the light of day. i wish i’d gotten some pictures of jim and barbara and their lovely house and gardens, but i suppose i was at my very most relaxed when i was there and thus unmotivated photographically.

you can play the slideshow below (hit the big green play button to start), but i recommend you visit the link here (click “slideshow” [far left top-ish] to watch it full screen). better viewing and easier to read my witty captions!

oh also i should be getting an endoscopy on monday. my docs want to check out this suspicious spot. i’m not worried, because the result is for informational purposes only and won’t lead to any change in plans or dramatic actions.

have a lovely weekend!

Posted in art, images, travel | No Comments »

Hey, Hermano: Passport to Bromania

April 24th, 2012

After a childhood with only a foster brother for a few complicated years, I have the distinct and remarkable pleasure of finding myself with SIX new brothers – five through the laws of in-laws and one through, shall we say, more unexpected sources (Michael: our mamma mia!). Don’t get me wrong; I adore my sisters, though our tumultuous relationships might demonstrate otherwise. But there is a particular bond of brotherhood that I missed growing up, and suddenly my life is flooded with brothers of all ages and experiences. And this weekend I stamped my passport to Bromania.

Austin was lovely: its weather, its people, its remarkable avian life, its comforting mix of southern food and tacos. But the company far outclassed any biscuits & gravy or chicken fried chicken. We celebrated the impending end of bachelorhood for Kathryn’s brother Scott, as he and his fancy fiancee Laura are getting married May 5th in Nashville (only for an event of such magnitude would we miss our beloved Derby party). I couldn’t really keep up with the rowdy nights, and ended up bouncing in and out of their weekend revelry. That was my third consecutive bachelor party attended while sober, including being the designated driver for my own last fall. Believe it or not, they’re somewhat less enjoyable without a little booze. Still, Scott has some marvelous friends, including, as an added bonus, Kathryn’s other brother Doug, and our honkytonkin’ adventures were a blast.

And the brotherly love didn’t stop there. Andy, my sister Jessie’s husband, hails from Austin, and his folks, along with his brother Will and many other lovely family members, all reside in the Brooklyn of Texas. Will and I in particular have forged a strong bond, and since he’s between jobs (wind power in Texas having been muscled about by powerful oil interests), he had lots of free time. We had a particularly lovely day touring through the Hill Country, surrounded by endless wildflowers and cloudless blue skies. Our itinerary-less journey took us to a particularly disturbing taxidermy showroom, a dip in the Llano River and some of the best BBQ on the planet at Cooper’s. I managed to swing a discount by walking up to the pit with lottery tickets, where the Pit Master offered me a free pork chop in exchange for a couple of tickets. No piglet this; the chop was the same circumference as my skull, and nearly as thick. His tickets were losers – my belly was the winner.

Beyond the band of brothers, Andy’s parents Jim and Barbara were consummate hosts; I made for an easy guest since I needed to sleep about half of every day. Jessie and Andy’s wedding was so full of old family friends that there was hardly time to make new ones, so it was a wonderful luxury to get some quality time with the Anderson Furgeson family. I also managed to find time for a lovely morning with recent Brooklyn transplants to Austin – Skippy and Courtney’s kids are crazy adorable, as you’ll see from forthcoming pictures.

All in all, it was a marvelous weekend, spoiled only by my constant, demanding fatigue. I give thanks endlessly that after four years of treatment that I’m even able to make trips like this, but my body and mind still have a lot of rebuilding to do. With my Hep C treatment scheduled to begin next week, I’m doing my best to enjoy the spring regardless of my unyielding exhaustion.

On the health front, some surprisingly optimistic news: the camera pill showed only a single suspicious spot, located high enough that it’s within reach for a biopsy. My GI oncologist is on vacation, but when she returns I’ll receive an upper endoscopy to get a sample. The results of the camera and scope aren’t definitive, as it’s impossible to take a look at the previously observed tumor sites on my exterior intestinal lining without opening me up again. SO not worth it.

This morning I received my first epidural cortisone shot, which will hopefully start to relieve the swelling of my damaged vertebral discs. Travel is not especially friendly to such injuries, so I could really use some relief from the pain. I should know in the next couple days whether it will make a difference – if it doesn’t do much, then the source of my leg pain may well be the lymphedema, which leaves us with few (read: no) options. For the number of people afflicted with lymphedema (think of all those breast cancer survivors with compression sleeves to compensate for the loss of their sentinel nodes in the armpit), it’s the least treatable of non-fatal ailments. The limited research into potential remedies has, so far, seen little success, though hopefully that will change as survival rates for lymph-related cancers increase. I’ve read of fringe scientists who’ve suggested nodal transplants, but until my edema becomes unlivable, that’s not the sort of dramatic solution that interests me. I have enough cadaverous parts already, thank you very much.

Posted in mobile post | No Comments »

austin! awesome!

April 18th, 2012

hello friends! i’ve been crazy busy this week and haven’t had a chance to post. so much has happened! all good stuff. my dad was in town a few days back, and we ate our way through the weekend. an old friend/band-mate and his (newly pregnant!) wife were also here for a visit. it was wonderful to catch up as we strolled together through a hot and rowdy saturday night in the east village. and i’ve been getting everything ready for my trip – i leave for austin in a few hours! kathryn’s brother scott is getting married the first weekend in may, and his friends are throwing him a bachelor party in austin! my only visit to austin was an overnight stop during an epic, too-fast cross-country road trip from albuquerque to austin to poughkeepsie (2,500 miles in under three days). between austin and new york we made only a single tourist stop – graceland. my god elvis had bad taste.

so now i get to experience austin for real. as an added bonus, the family of my sister’s husband andy lives in austin, so i get to see them too! it’s an all brother-in-law-focused weekend. BILF WEEKEND! ha.

i’m glad i can stay with andy’s family – the late nights and heavy drinking that are sure to commence are neither appealing nor possible. though my body continues to improve, i’m still keeping teetotally away from alcohol. it’s funny; five years ago, when i was bartending all the time and drinking well beyond reason, the suggestion that one day i would willingly dry out would seem about as likely as a new york mets/oakland a’s world series. but now, after all my body has been through, yet another poison holds no appeal. i’ll have a sip here and there, but after even a few sips i start to feel awful.

and of course i’m also glad to see andy’s family because they’re wonderful! with so many old family friends at jessie and andy’s wedding, it wasn’t a great time to get to know new friends, so now i’ll have the luxury of a gorgeous weekend of texas spring to spend some time going deeper with the anderson furgeson family.

in the meantime, i’m doing my best to care for my ailing back, though every day ends with me limping and crippled. next week i’ll get a cortisone shot and begin a combination of chiropractic adjustments, physical therapy and acupuncture. i wish i could avoid the hassle of air travel – i’m definitely bringing my cane and pulling the C card for all it’s worth.

new york: i’ll be back on monday. don’t have any fun without me!

Posted in events, pain, physical therapy, travel, weather | 3 Comments »

easiest treatment ever…

April 10th, 2012

because it didn’t happen. sigh. just when i’d gotten myself good and psyched up for it.

defective: deliver.

my liver’s just not doing that well right now. it’s through no fault of my own, as far as we can tell. it may be that my hepatitis viral load is more active at present – it’s hard to tell.

as my doctor so succinctly put it: “if i give you IPI right now, i’d kill ya.” yeah, i’ll take a pass.

so before we can move forward with IPI, we’ve got to get my liver enzymes under control. the best way to do that is to try and treat my hepatitis instead. i have very little idea what that really means, but i’m going to chat with my GI doc when i go in to swallow the camera pill on thursday – i’m hoping he can either guide me through the treatment options, or point me to a hepatologist who can. i’d prefer to avoid adding yet another doctor to the mix, but of course i want to make sure i’m working with people who really know what they’re doing.

it was frustrating to get to the doctor with kathryn early this morning and leave untreated, but it means more time to continue detoxing and recovering from these years of poisoning myself. for the time being, my cancer is not aggressive, nor is it especially problematic or dangerous. with that in mind, it’s as good a time as any to treat the hepatitis and keep a wary eye on my cancer. if we can completely eradicate the hepatitis entirely, it’ll put me at much less risk for some of IPI’s nastier side effects. speaking of which, my doctor reassured me that nearly all of the dramatic and scary-sounding side effects of IPI were extremely low percentage occurrences – as in 1% or lower. the most common ailments, rash and itching, appeared in just 12% of patients. she explained that nearly 90% of patients on IPI – even those with compromised livers – had almost no side effects at all. needless to say, that’s a much rosier picture than the stupid internet had led me to believe.

so if we can get rid of this pesky hep C, we should be in pretty good shape.

for now, though:

more waiting.

are you kidding me?

Tags:
Posted in general updates | 5 Comments »

what a pill.

April 9th, 2012

FINALLY. my insurance company has approved my capsule endoscopy after i can’t even remember how many months of waiting. i think i first tried to get the procedure in november – that’s an awfully long time without access to the only diagnostic tool that allows us to get a sense of my disease progression. i go to the hospital early on thursday morning to swallow the pill, then spend the day wearing the data belt that wirelessly receives the information from the pill as it journeys through innerspace. my insurance documentation warns me that they haven’t decided whether or not they’ll pay for it, though they’ve said the same about a number of my covered procedures, so i’m not too concerned. still, the capsule endoscopy can cost upwards of $2,500. so let’s hope it’s paid for.

how was your easter/passover weekend? ours was lovely, thanks for asking. we joined our close friends matty and lila at their family’s seder dinner – kathryn’s first ever! you’ll get a sense of its conservative nature when i tell you that they served pulled pork. so… not the most observant family. which is just fine by me. i love a raucous, rowdy seder dinner. though not so much the passover weekend traffic out to long island.

and for easter we met up with some new friends who live just down the block for an easter-themed scavenger hunt through the neighborhood. it was epic. the hunt had four stages, ending with teammates entirely different from the initial egg-focused relay races. my team won! our victory was pinned mostly on the strength of our original music video/rap, “easter is for scavenging.” DJ TJ (aka tiny jonah, my muppet alter ego) featured heavily in the video. with puppets on your side, how can you lose?

and speaking of not losing, the mets are looking much better than anyone expected at 4-0 to start the year. sure, it’s early, but we mets fans have to take great joy in our small victories. they’re scrambling to fill seats, so wednesday’s 1 PM day game features tickets for $2.50. that’s like prices back in oakland! no dollar special on hot dogs though. i’m still looking for company to join me at the game – shoot me an email if you’d like to come along!

tomorrow, if my blood draw doesn’t show anything out of the ordinary, i’ll have my first infusion of ipi. the infusion itself only takes 90 minutes, but with so much to discuss, we’ll probably be there half the day. if i have some time after the appointment, i’ll give you more details about the treatment. we have lots of unanswered questions – this is one of those times when it’s a wonderful gift to have a team that takes the time to be present and stay with us until we run out of questions and our fears are (as much as they can be) assuaged. i’ll try to do the same for you.

Tags: ,
Posted in baseball, events, religion | 5 Comments »

as if i didn’t have enough to worry about…

April 5th, 2012

last week i received an MRI of my lumbar spine to try and figure out why my legs were so constantly achy and weak. the ongoing recovery from my ACL surgery only magnifies the low to moderate chronic pain. i met with my pain management doctor today to get the results – he’s a new addition to my ever-expanding stable of medical professionals (a baker’s dozen on speed dial!). and thank goodness for him; you may remember that my former pain mismanager and i had, shall we say, philosophical differences?

about ten years ago, i stupidly, drunkenly fell/was accidentally pushed off a balcony, fracturing my tailbone and sustaining some minor spinal damage that ailed me for quite a while. it didn’t help that the medical “professionals” in charge of my care (through kaiser in oakland) were awful, uncaring shills for painkiller suppliers – it took threatening my doctor with legal action just to get him to stop giving me larger and larger doses of vicodin and get me my first x-rays (months after my accident – for reals!) and finally into the capable hands of a wonderful physical therapist. luckily, i know a lot more these days about managing my care. while the injuries haven’t bothered me for some time, i’m not surprised to hear that my lower back is in pretty bad shape. the four years of on-and-off steroid use and heavily toxic treatments can’t have helped anything, and with my deteriorating body and anemia, my once religiously followed regimen of exercise and yoga has fallen by the wayside. way by the wayside. like past the wayside and into the next county. ok i don’t exercise ever, more than irregular light stretching. but i bet you wouldn’t be interested in stretching if you had…

three bulging discs (three!), in the L2/L3, L3/L4 and L4/L5 vertebrae. on top of that (or below, more accurately) i have an extruding (aka ruptured) disc on the L5/S1, the vertebra that joins my lumbar (L) and sacral (S) sections of my spine. extruding/ruptured is a step beyond bulging – if the intervertebral disc is like a jelly doughnut, then the disc = dough, and tissue within the disc = delicious jelly. but oh no! messy rupture! in an extruding disc, the jelly/tissue inside the disc/dough has leaked out (if you’re interested, you can check out a better non-doughnut-related explanation here). the leaking proteins from within the extruding disc could be aggravating a nerve root within my spine, which could absolutely cause the pain and weakness (and occasional tingling) in my legs. at the same time, my pain doc explained that those who suffer from lymphedema can experience chronic pain in the affected areas. we may also try a cortisone shot to relieve the intervertebral swelling if the prescribed course of action isn’t effective.

as i gear up to begin the ipi infusions next week, i’m also starting a course of physical therapy and chiropractic adjustments, along with returning to acupuncture (which i’ve been meaning to do anyways). it’s really not such a bad idea – the focus on keeping my body as healthy and limber as possible may help me deal with potential fatigue and further pain. and hopefully, with a little stretching and careful maintenance, my body will recover quickly. and who knows? perhaps the immunological response triggered by the infusion will magically make my edema disappear and my discs will return to their normal size and proper place.

a boy can dream, can’t he?

Posted in gratitude, links, pain, physical therapy | 3 Comments »

extreme possibility.

April 4th, 2012

i’ve done some reading up on yervoy/ipi/ipilimumab, the treatment that i’ll begin on tuesday. you can browse to your heart’s content here, if you like. but be forewarned: it isn’t pretty.

most of the dramatic side effects occur rarely, if at all. still, we’ve got to be prepared for some nastiness. i had a long talk today with a friend and fellow melanoma survivor. his disease has taken a remarkably similar path: mole on the left leg, migrating to the lymph nodes of the left groin, then the right groin, then distant metastases and finally internal organs. he managed to finish three of the four infusions of ipi before ceasing the treatment. also ceasing: any production at all in his adrenal and thyroid glands. ouch. rare side effects – the 1% only matters if you’re in the 1%.

if all goes well, i’ll receive four infusions, three weeks apart. usually the side effects don’t start at all until well into the cycle, and sometimes it can take months before they really get rolling. i’ve had to cancel my planned first descents trip to go kayaking in glacier national park – i was scheduled to arrive a week after my final treatment, and it would be risky to put myself so far out into the countryside at that time. ditto for joining kathryn’s visit to see her friends in zambia. oh, how i would love to return to africa. but if kalispell is too far-flung, then the swamplands of botswana are surely out of the question.

once again, i have to thank all the powers that be for my health insurance: each infusion costs $30,000. $120,000 in total. and then there’s the potential costs of visits and treatments to manage any side effects.

still, it’s worth it. i’d pay even if i didn’t have insurance. and by “me,” i mean “me and you and everyone we know.”

i’ve never faced such a realm of extreme possibility. a full 10% of patients who receive yervoy are completely cured. that’s not a typo. some people have lived for years now post-ipi without showing any signs of their cancer. that would be a remarkable gift.

of course, there’s the other 90%. and within that 90%, many, like my friend, have come out the other side of treatment permanently damaged in life-altering and life-threatening ways. given my hepatitis-C-positive status, we’ll have to vigilantly monitor the long-term effects on my liver. liver failure is a real possibility.

so here i stand, with life, a beautiful life free of cancer on one side, and on the other pain and suffering and death. never before have i faced a treatment that could produce such dramatic conclusions. sure, i’ve seen a couple clinical trials that listed as a possible side effect: “death” – but this feels more real this time, especially given the fragile state of my interior workings. i’ve escaped the pressure by watching cartoons and catching up on fantasy novels and lots of comic books. but it’s hard to go through with the day-to-day when so much hangs in the balance.

as always, i so appreciate all of your support. i’m sorry if i haven’t written some of you back; it’s taken a lot just to keep my chin up and put on a brave face. still, your kind words and your continued donations give me strength. they keep me going in the face of tremendous unknowns and extreme possibility.

Tags: , , , ,
Posted in clinical trials, gratitude, links, loss, melanoma, philosophizing | 5 Comments »

no protein. no vaccine.

March 30th, 2012

today is not my favorite day.

the sun may be shining, the birds chirping, the soft spring air rustling through the freshly budding trees.

all fine and good and welcome, even after our new york non-winter.

but late this afternoon i missed a call from my oncology team. their message was not good news.

it turns out, after all these weeks of waiting, that my body does not excrete the NY-ES-01 protein. so the vaccine won’t work.

so, on to our new plan:

yervoy, aka ipilimumab.

the drug is FDA-approved for treatment of advanced melanoma, and has shown great promise. patients with bodies riddled with metastases have, after a single infusion, shown a remarkable – miraculous, really – response. tumors haven’t just slowed; they’ve completed disappeared. even patients who didn’t react quite so dramatically have made great progress against their extremely advanced disease.

which sounds great. and i should be optimistic, and i am.

however.

yervoy is extremely toxic, and the range of side effects is startling and unappealing, to say the least. it’s especially problematic that the drug is extraordinarily destructive to the liver – and since i already have hepatitis C, i will be at significant risk of liver failure.

also known as death.

though i’m hesitant to share this with you, it’s pressing heavily on me and it always helps to name one’s fears. here are the possible side effects of yervoy:

  • Inflammation of the intestines(colitis) that can cause tears or holes (perforation) in the intestines. Signs and symptoms of colitis may include:
    • diarrhea (loose stools) or more bowel movements than usual
    • blood in your stools or dark, tarry, sticky stools
    • stomach pain (abdominal pain) or tenderness
  • Inflammation of the liver(hepatitis) that can lead to liver failure. Signs and symptoms of hepatitis may include:
    • yellowing of your skin or the whites of your eyes
    • dark urine (tea colored)
    • nausea or vomiting
    • pain on the right side of your stomach
    • bleeding or bruise more easily than normal
  • Inflammation of the skinthat can lead to severe skin reaction (toxic epidermal necrolysis). Signs and symptoms of severe skin reactions may include:
    • skin rash with or without itching
    • sores in your mouth
    • your skin blisters and/or peels
  • Inflammation of the nervesthat can lead to paralysis. Symptoms of nerve problems may include:
    • unusual weakness of legs, arms, or face
    • numbness or tingling in hands or feet
  • Inflammation of hormone glands(especially the pituitary, adrenal, and thyroid glands) that may affect how these glands work. Signs and symptoms that your glands are not working properly may include:
    • persistent or unusual headaches
    • unusual sluggishness, feeling cold all the time, or weight gain
    • changes in mood or behavior such as decreased sex drive, irritability, or forgetfulness
    • dizziness or fainting
  • Inflammation of the eyes. Symptoms may include:
    • blurry vision, double vision, or other vision problems
    • eye pain or redness
my word that sounds horrible.

please know that although this post is filled (reasonably so) with awful-sounding side effects, along with great bitterness and disappointment, that my frustration is not overwhelming, and kathryn and i are doing alright. this is an unfortunate turn of events, but at least there are still options available to us – if i was at this point ten, or even five years ago, i would be out of options, save for more toxic (and not especially effective) chemotherapy or even intestinal resection (taking out a foot or two). next month marks a full four years since my diagnosis. i have already beaten the odds again and again, and i will continue to do whatever it takes to continue.

i don’t think i’ve shared with you the final tally of your generous donations towards my medical expenses: in the end, i tallied over five thousand dollars from over 100 individual donors. incredible. i mention this because your gifts are so very appreciated, in particular at a time like this. i presently have a zero balance due, and i honestly cannot remember the last time that was the case; it has been at least a year, if not two, that i didn’t have a stack of overdue bills hanging over me.

but your financial generosity is so much more than that – though five thousand dollars is an astounding amount for a casual asking. i know i’ve thanked you many times before: here, in conversation, wherever i see you, whenever i find the time to say or send a proper thanks. kathryn and i could not manage this without you.

it is a rare gift to see so clearly the love that comes from all corners; if there is a blessing in this unceasing, unyielding battle, it is to feel so strongly the palpable love and caring of the community around me, always present whether near or far. there is no dollar amount equal to that knowledge. and the knowing allows me to read through that sickening list above without completely breaking down. i know that even if the worst of the side effects should plague me, that you will be at my side through it all.

and for that i am eternally grateful.

Tags: , , ,
Posted in chemotherapy, clinical trials, complaining, gifts, gratitude, loss, love, melanoma, pain, sadness, skin cancer | 5 Comments »

my baby is on TV!

March 29th, 2012

so remember how i sold my 1971 guild starfire hollow-body bass to alan hampton, the bass player for andrew bird? i told you about it a couple weeks back.

well guess what? she’s all souped up and has joined the band on tour! she made her televised debut on the jimmy fallon show tuesday evening. man she looks and sounds great. i’m so glad she has a better home – i would guess she was feeling bored just hanging on my wall.

Tags: , ,
Posted in art, music, rock and/or roll, videos | 1 Comment »

My last painting (for now)

March 28th, 2012

Since I still don't have any new health news to share, I thought I would post my painting from my final abstract expressionist painting class. The sessions were a joy, and I was pleased with three of my four works. I'm thinking seriously about starting to paint as a hobby. The Creative Center has just posted their offerings for Spring, and the landscape painting class is appealing – though with my lack of any skill at figurative construction and my love of color, I think my landscapes will end up about as abstract as my first few paintings.

The class was a cathartic experience. I paint with brute force, using any tool I can find to apply huge amounts of paint. Paper towels, broken popsickle sticks, my hands – I subject our lovely watercolor paper to as much as it can handle without tearing apart. In fact, as the initial layers dry and I continue to abuse the canvas, I've had to fill in the spots where the paper starts to disintegrate. It is SO fun. And given the going on six weeks that I've suffered through this endless waiting for the protein test results, it's a marvelous feeling to just tear into something. for my next project, I'm going to find a bat and make some post-modern sculpture out of the junk in our basement.

That'll teach you, rusty air conditioner!

Posted in mobile post | 4 Comments »

I have too much pigment.

March 24th, 2012

So… still no word. But my oncology team was nice enough to check in late yesterday. It turns out that the pathology lab has made multiple attempts at reading my tumor tissue, but they have yet to extract a viable sample. The cells of my tumor contained so much pigment that it’s difficult to examine the protein properly. They have to extract the pigment – a challenging process – and so far they’ve either removed too much pigment, leaving the sample useless, or they’ve removed too little, leaving the sample still unreadable.

As tired as I am of waiting for the results, it’s at least nice to know that they’re doing their best and that my tumor tissue isn’t just sitting on ice untouched. I’m keeping my fingers crossed that we’ll get news by the end of next week, but there’s just no way to know.

Posted in general updates | 1 Comment »

for gary

March 21st, 2012

After watching most of gary's touching memorial service yesterday, I headed to painting class with a heavy heart. We were given real canvas for the first time – it responds so differently to the oil paints! I think I may have to take up painting after the class is done. Next week is our last session and I can't imagine leaving the brushes behind.

I decided to try and paint Gary. Not figuratively – that would be a disaster. But I wanted to capture something of his spirit, the joy and vibrancy with which he lived his life. As much as I love this painting, I'm planning on sending it to Gary's widow Estelle. It seems only appropriate. What do you think – do you see Gary?

Posted in mobile post | 1 Comment »

« Older Entries