Jon's Pheo Blog

Latest Chemical Markers

2009-05-04T19:13:00.000-04:00

Democratic Party!

2008-09-17T20:41:00.001-04:00

Tumor Pop Art

2008-08-25T18:03:00.005-04:00

Here's a graphical representation of some of my tumors (Chest #1-4, Abdomen #1-3). Red is the original size pre-chemo; blue, current size (to scale). Kinda looks arty. Anyone a gallery owner who wants to represent me?

Updated Tumor Table

2008-08-25T17:45:00.004-04:00

Here's my latest attempt at tracking the many tumors hanging out in my chest and abdomen. As I said before, this is not an exhaustive list. There are many more, but these are the easiest for me to follow along with through the radiologist's reports. Blank spaces do not mean that the tumor is new, just not as easily marked in previous reports.

Basically, nothing new, everything still shrinking a millimeter at a time!

MRI

2008-08-21T11:05:00.002-04:00

Quick update. Preliminary MRI results show that all tumors continued to shrink. Details to follow.

Latest Chemical Markers

2008-08-19T07:54:00.004-04:00

Seems like the 6 week cycle is working. I'll find out more today and tomorrow after I get my latest round of MRIs. Hours and hours in a small tube. How fun!

Fuck Cancer (again)

2008-07-24T20:02:00.004-04:00

Someone asked where to get the "Fuck Cancer" hat. Since they posted anonymously, everyone gets to find out!

The hat is made by living with cancer rocker Jackie Farry, made famous on the documentary, Crazy Sexy Cancer (no Anne, I am still not switching to a raw food diet!), and available for sale here.

It's kinda a girl's hat, but can be retrofitted for a guy's head. And you can totally walk around with he word "FUCK" on your head with complete impunity.

Provincetown 2008

2008-07-13T20:55:00.005-04:00

Not many updates. Just summerin' away... More photos by clicking here.

Family Values

2008-07-01T10:32:00.004-04:00

Two United States Senators implicated in extramarital sexual activity have named themselves as co-sponsors of S. J. RES. 43, dubbed the Marriage Protection Amendment. If ratified, the bill would amend the United States Constitution to state that marriage "shall consist only of the union of a man and a woman." Sen. Larry Craig (R-ID), who was arrested June 11, 2007 on charges of lewd conduct in a Minneapolis airport terminal, is co-sponsoring the amendment along with Sen. David Vitter (R-LA).

In July of 2007, Vitter was identified as a client of a prostitution firm owned by the late Deborah Jeane Palfrey, commonly known as The DC Madam. (PageOneQ)

I'm Voting Republican

2008-06-15T14:23:00.002-04:00

Pork and Beans

2008-05-24T11:54:00.005-04:00

I love this song and finally got around to watching the video and its bril...(wait for it)...liant!

All the crazy youtube references and quasi-celebrities who actually get a second fifteen minutes of fame...

Numa Numa - Obscure kid lip syncs "Dragostea din tei" and gets over two million hits in less than 3 months.
Dramaitc Look Squirrel - short, sweet, and huge hit.
Afro Ninja - Ouch, what!?!
Diet Coke and Mentos - I blame the FooFighters for this one.
GI Joe PSA - makes you wonder what the original was even for?!?
T-shirt World Record - why? do they make shirts that big? way surpassed by the amazing folding t-shirt video
Christ Crocker - I refuse to even link to this one, although he does a good job in the video.
Miss Teen USA - Ouch! "I personally believe the U.S. Americans are unable to do so because, uh, some, uh...people out there in our nation don't have maps, and, uh, I believe that our education like such as South Africa and, uh, the Iraq everywhere like, such as and...I believe that they should, our education over here in the U.S. should help the U.S., err, uh, should help South Africa and should help the Iraq and the Asian countries, so we will be able to build up our future for our..."
Evolution of Dance - p.s. Grade 2-5 Musical "Rock! Celebrate the History of Rock and Roll" is this Wednesday night.
Chocolate Rain - Strange take on racism? Not sure, but I remember watching it over and over when it first hit. I love how he moves away from the mic to take in a breath.
Peanut Butter Jelly Time & Peanut Butter Fedder Time - Nothin to say about either of these.
Daft Hands - Guess this is some sort of thing I missed. There's daft hands, daft bodies, daft feet, daft babies...
Shoes - How'd I miss this one when it came out?!? I love it! "These shoes rule! These shoes suck!" Feels a little like an old John Waters movie.
Will It Blend? - Yes, an iPod will blend! Who hasn't wanted to do something like this?
Charlie the Unicorn - "Alright. Fine! I'll go into the freakin candy cave."

Trapeze II

2008-05-18T20:53:00.010-04:00

Had my second trapeze class this weekend. Not as sore as last time (yet...). This week I worked on a new move - The Whip. You kind of do this weird contortion with your body that looks like a half pike in diving but your legs are facing backwards, then you let go and pop yourself into a superman pose to get caught. I caught with the knee swing at the end, but with some more practice, hope to catch the whip next class. Dan had his first class this weekend and looked like a pro - got the back flip and the catch like a true circus freak! Linda came to watch and had dinner at Jeanette's house after. Check out more photos here.

Lesion Chart

2008-05-11T08:25:00.007-04:00

Ok. Here's my attempt at charting the progress of my tumors. Take it with a grain of salt, as this is my interpretation of the readings of the MRI. The chest chart is pretty spot on, as they label them very nicely for me and follow the same tumors month to month. There are several more abdominal lesions, but these are the ones that they number label each time to follow. The pelvic lesions are only labeled by their location name, which each radiologist seems to have a different name for, so I didn't even attempt to chart them. Click the above chart to enlarge.

Updated Chemical Markers

2008-05-08T18:01:00.006-04:00

My latest chemical markers (click above to enlarge), as of April 3rd, 2008. The trend continues. I also received my latest MRI results. I am going to attempt to create a data chart displaying the progress we've made so far, but for now, the important news is that since I started chemo there have been no new lesions, no growth, and continued shrinkage (be it a millimeter or two at a time). If you're new to my blog, the original prognosis/hope for chemo was, at best, to allay symptoms and possibly hold off on growth. So, all good news!

~~UPDATE: Oops! Just realized the dates are all off on the chart. Will fix after chemo today. General flow of the chart is correct though. Highest point is one year ago at start of chemo.~~

What I Listen To During Chemo

2008-05-07T20:40:00.010-04:00

Tomorrow is the start of another chemo weekend. As I think I wrote about before, the iPhone is a savior to make the hours and hours go by at least a little faster. So, what else do I listen to as the chemicals drip into me? Here's my top 20, according to number of times played (which is probably a lot more accurate, if slightly more embarrassing, than had I picked them myself).

I've Never Been to Me, Charlene (43 plays) - WHAT!?! There's no excuse for this! 43 plays?!?
The Boys of Summer, The Ataris (30) - Pop punk fun!
Boyz-N-The Hood, Dynamite Hack (26) - Fantastically amazing cover version of Eazy E's rap single.
Suddenly Seymour, Little Shop of Horrors (26) - Dan met Ellen Greene! Jealous much?
52 Girls, B-52's (24) - We tried to come up with the 52 girls at dinner tonight. Made it to about 9. There are actually only 25 named in the song.
I Am Woman (Dance Mix), Helen Ready (23) - Gay enough?!?
The Jeep Song, Dresden Dolls (22) - Mmmmm... Amanda Palmer...Set in Boston...Simple song that so expresses an emotion we've all been through.
Maria, Blondie (21) - Good little ditty, but how'd it make it so high?
Punk Rock Girl, Dead Milkmen (21) - I still own a t shirt I bought at Zipperhead back in the early 80s. Didn't meet my punk rock girl there, but spent plenty of time there.
Happiness, You're A Good Man Charlie Brown (21) - The littel red haired girl nibbles her pencil! She's human! When Lucy whispers to Charlie Brown at the end that he is a good man I weep! Everytime.
Big Time Sensuality, Bjork (19) - Not much to say
Friday I'm In Love, The Cure (19) - Definitely not my top Cure song, but catchy and poppy, so good quick listen when you're just not looking for a Kafka reference.
Jet Boy, Jet Girl, The Damned (19) - Released in 1977, I listened thousands of times as a prepubescent boy for the gay naughtiness in the lyrics. Check out Plastic Bertrand's "Ca Plane Pour Moi" same music, new lyrics in French.
We Live So Fast, Heaven 17 (19) - 1983. New Wave. Synthesizers. Drum machines. Will music ever be as good again?
Could It Be Magic?, Barry Manilow (18) - He just throws that microphone down and walks off the stage mid-chorus as the backup singers go on without him...chills!
Hit Em Up Style, Blu Cantrell (18)
No More Drama, Mary J. Blige (18)
Family Affair, Mary J. Blige (18)
Domino Dancing, Pet Shop Boys (18)
You're A Good Man Charlie Brown, Cast (18)
Ladykillers, Lush (18)

Cancer Smancer

2008-03-22T21:52:00.012-04:00

Not that I'm creating some sort of bucket list, but I'm also not planning on letting this cancer thing stop me from living my life. Some may call it naive, but I don't see this incurable cancer business as a death sentence or a reason to pursue my life in any different manner. I'm also not gonna sweat every little bump and bruise I may get and work out twenty permutations of how it may affect some random lymph node or cell in my body.

Case in point...when my ~~old~~ (she prefers former) boss invited me to join her in a trapeze lesson, I jumped at the chance. And it was amazing. There's no holding back in this class. After about a 42 seconds of an "on the ground" lesson, you're a hundred feet up, toes at the edge of the platform, and about to dive into the air holding onto a tiny little bar. And it's not just swing back and forth and then back to the platform - on your first swing you swing out, lift your feet and hang upside down by your knees (no hands), get back to your hands, and finish with a back flip dismount. You keep perfecting your skills for about an hour and a half, when you're ready for the big finish. Everything you did before but as your swinging upside down by your knees, you fly across to the waiting arms of one of the pros. You get two attempts - first time, missed and had to settle for another back flip; second time, maybe not with the greatest of ease, but I was definitely floating through the air on the flying trapeze. Already signed up and paid for my next two lessons. Dan's flying with me this time. More pics by clicking the slide show above and to the right.

ps. What's with my ass hangin' out on that one?

A Tragedy That Should Have Never Happened

2008-03-10T20:36:00.006-04:00

If you live in the Boston area, please join me Wednesday night in remembering Lawrence King's short life at a candle light vigil on March 12, 2008. The vigil will be held in Copley Square from 7:00 pm to 8:00 pm.

Ten years after Wyoming college student Matthew Shepard was brutally murdered because of his sexual orientation, a 15-year-old gay California student was shot and killed by another student because of his sexual orientation and gender expression.

Lawrence King, an eighth-grader at E.O. Green Junior High School in Oxnard, was shot Tuesday morning in class. The 14-year-old attacker, among a group of students known to bully and harass King because he sometimes wore makeup and jewelry and told classmates he was gay, will be charged with murder and a hate crime.

"This incident of senseless violence is truly horrifying, and our hearts go out to the student's friends, family and the E.O. Green School community," said Kevin Jennings, Executive Director of GLSEN, the Gay, Lesbian and Straight Education Network. "As a nation, we've had our heads in the sand for far too long. We need to do everything we can to prevent something like this from happening again.

"In doing so, it's absolutely crucial that we name the problem of anti-LGBT bullying and harassment and address it directly to find a solution to the everyday fear that keeps countless youth from feeling safe in school. We must confront the fact that LGBT students are much more likely to be threatened with a weapon and much more likely to feel unsafe at school than other students."

The 2001-02 California Healthy Kids Survey for the California Department of Education found that California students who were harassed because they are, or are perceived to be, gay or lesbian were more than five times more likely than other students who were not harassed to report being threatened or injured with a weapon (28% to 5%).

"I am deeply saddened by the terrible news about the shooting of Lawrence King. My prayers go out to all of Lawrence's friends and family," said Judy Shepard, Executive Director of the Matthew Shepard Foundation. "This terrible incident underscores the fact that we cannot let hate go unchecked in our schools and communities. Our young people need our direction and guidance to prevent this type of crime from happening. I urge all parents and teachers to educate their children and students about acceptance, understanding and compassion."

Two of the top three reasons students say their peers are harassed in school are actual or perceived sexual orientation and gender expression, according to From Teasing to Torment: School Climate in America, a 2005 Harris Interactive report commissioned by GLSEN. The top reason is physical appearance.

As was the case at E.O. Green Junior High, what begins as bullying and harassment too often escalates to violence. In GLSEN's 2005 National School Climate Survey, nearly a fifth (17.6%) of LGBT students reported being physically assaulted at school in the past school year because of their sexual orientation and over a tenth (11.8%) because of their gender expression.

California is one of only 10 states that protect students from bullying and harassment based on sexual orientation and one of only five that protect students from bullying and harassment based on gender identity/expression.

"Safe schools laws and policies are vitally important, but simply having a law is not enough," Jennings said. "Schools need to implement staff development and trainings to address anti-LGBT bullying and harassment. Schools also need programs that teach young people respect and tolerance. Every student deserves to feel safe in school. We must take action and take responsibility for our inaction."

Another crucial intervention to protect students and all Americans is to pass the Matthew Shepard Act as an appropriate and measured response to the unrelenting and under-addressed problem of violent hate crimes committed against individuals based on actual or perceived sexual orientation, gender, gender identity and disability.

If you don't live in Boston, please check the Remembering Larry site for a vigil near you.

If your a teacher, like me, in a school please download the following..."Ten Things Educators Can Do To Ensure That Their Classrooms Are Safe For ALL Students"

Happy New Year

2008-01-14T12:10:00.001-05:00

Chemo Weekend Part II

2007-12-08T15:58:00.001-05:00

Not much new to add since Thursday. Mainly because I slept most of Friday afternoon/evening away. Friday night Dan, Anne, Lisa, Jenn, and I went to see the Holiday Concert put on by the Boston Gay Men's Chorus. It was kinda scary all week leading up to the night because I didn't know how I would feel, and not being able to go would have been a hard hit to my psyche. But I felt pretty good and we had an amazing time. There's nothing more festive than 150 gay men singing. This year's program was based on the idea of "Peace on Earth" and the men sang songs from around the world on this theme. Of course there were plenty of old-time Xmas favorites thrown in.

Highlights of the program included: "Betelehemu," a West African Christmas song in Yoruba dialect; "The Twelve Days of Christmas", a duet between an opera diva (female) and the chorus; and a stunning version of "Silent Night" done in sign language - just picture 150 tuxedoed men signing in unison, there were a more than a few moist eyes in the audience.

Finally, the highlight of highlights, Christmas on Broadway, a selection of Xmas showtunes.

"Hard Candy Christmas" from Best Little Whorehouse In Texas
"Tis' the Season", a gospel version of It's beginning to Look a Lot Like Christmas from Here's Love
and (wait for it...)
"Turkey Lurkey Time" Dan and I sing this throughout the year and have been trying to get the choreography down since we saw the kids from Camp perform it. Its a Burt Bachrach tune from the show Promises, Promises and an absolute hoot. Here's Seth Rudetsky's take on the insanity of it from his weekly show "Broadway Chatterbox."

We're so gonna be able to do that by Christmas!

Chemo Weekend Part I

2007-12-06T12:44:00.003-05:00

So, Anne's always asking me what chemo is like. I usually give a technical description of needles, drug names, and the lousy lunch they offer, knowing full well that's not what she wants (needs?). So here's an attempt at a fuller description. I play my emotions close to my sleeve, so we'll see how open it goes.

Wednesday Night

Slight feeling of dread sets in. At least with my new four week cycle it doesn't feel like I just finished my last cycle. I ate my favorite ginormous calzone for from Brother's Place, my lunch version of the last supper. Cable is out so I can't zone out in front of the TV so I go to bed early. Benna takes her time joining me and hisses when she finally does. I ponder whether this is a good or bad omen. If she were too lovey I'd fear that she was using her cat sense to see that I was going to have a rough treatment. Not cuddly enough and she's avoiding me because I smell like death. Logical, no? But you wanted to know what goes through my head.

Thursday

7:00am - My appointment is not until 9:00 but I still have to get up and shower so I can apply the Emla cream (the stuff that numbs the skin over my port). I know, not a huge deal, but basically everything between now and Monday becomes a way huge issue in my head.

8:45am - Get my port accessed to draw blood. Julie, my chemo nurse, is back from maternity leave. In a moment of selfishness, I worry she can't separate from the kid and give me the full attention I'm due.

9:00am - Meet with oncologists. I'm doing well so there's not much to do but wait for the dreaded numbers to come back. Too low and I can't get treatment this week and the threat of another Neulasta shot. Its a game to see if I can pull up the results on my iPhone before they let me know (I can get results in real time). As I wait, I decide even if they send me home I'm not going in to work. I'm already exhausted and its only 9:30.

10:15 - 11:00 - Time goes by quickly with all the commotion of putting in tubes and bags. Then...

12:30 - Time drags. I'm the unsocial patient in my section. I usually ask for the curtain to be pulled to cut me off from the rest of the ward (ward - it is like a prison here. No time off for good deeds or leniency from the guvnor. And the term life sentence is extremely apt, no? In many ways.) Anyway, I hate how it feels sitting here as if on view. Everyone who walks by does the look, they try to figure out, in the 4 seconds it takes to pass by, what's he got, how long is he gonna last, is it worse than what I've got (or whoever they're here with)? I do it too as I walk by others so I can read the faces. So I shut my curtain. Plus, bless them, it keeps the chipper volunteers away.

12:45 - The iPhone is a savior. Between bad utube videos and music, times moves at least at a crawl, not a standstill. Until I stupidly decide to play Zane Campbell's "Post-Mortem Bar."

I took a walk I didn't know which way I was goin'

But somehow or other I ended up here where

We said we'd meet again and I guess I was hopin'

But the place had been closed down a while

It was all dark in there

And we'll go down to the post-mortem bar

And catch up on the years that have passed between us

And we'll tell our stories

Do you remember when the world was just like a carnival opening up

You may know this song from the final scene in Longtime Companion, when Willy , walking down the beach with Fuzzy and Lisa, dreams of the day when AIDS is ended. "I just want to be there," he says as he envisions what the scene would look like that day, thousands of people celebrating on the beach at Fire Island. And his best friend from years past, since felled by AIDS, comes out of the crowd and they hug. The song sets the scene perfectly, so I of course start bawling in my little cubby. Now this song can make me cry at a birthday party surrounded by elephants and ice cream, so imagine it during chemotherapy. Oh, and just to pour salt in the wound, next I decide to listen to The The's "Love is Stronger Than Death"

Tears may blind the eyes but the soul is not deceived

In this world even winter ain't what it seems.

Here come the blue skies here comes springtime.

When the rivers run high & the tears run dry.

When everything that dies.

Shall rise.

Lovelovelove is stronger than death.

Smart move! PS. Both of those songs are to be played at my funeral (not being morbid, I planned that well before I knew I had cancer).

2:30 - Sat in a stupor for the rest of the day. You can't watch the drip. It senses you're watching and purposefully goes slower just to taunt you.

So that's part one of what chemo is like for Jon. Stay tuned for more. Its gets juicier as the chemicals start to kick in around Friday night and really throw my emotions for a loop!

Montreal Trip

2007-09-03T20:47:00.000-04:00

So, before summer was officially over, we decided to get away for one last weekend. Dan, Cliff, and I drove up to Montreal for Labor Day Weekend. I figured - who wants to look at pictures of me getting poked in the arm and shot up with tons of chemicals, so please enjoy the photos we took on the trip (click here or watch/click the tiny slideshow to the right). Most of them are from Parc Jean-Drapeau, where the World's Fair was held in 1967. Others are from Mont Royal and the Old Town. Enjoy!

Cycle 8 in 4 days - I'll report back after then.

New Chem Markers and Shortest Break Ever

2007-08-26T19:02:00.000-04:00

Latest chemical markers taken during Cycle 7 are here. The numbers seem to be hovering around this low point now. I have an appointment with my endocrinologist next week, so will have her input on whether they have bottomed out for now.

If you read my last post, disregard everything it said. Well mostly everything. If there was something witty or smart - that can stay. But anything about giving my body a break from chemotherapy is no longer. After a consultation between my docs here in Boston and those at NIH, it has been decided not to stop treatment at this time. There may be some tweaks to dosage and timing, but the chemicals will be kept pumping through me for the foreseeable future. It seems that preliminary studies out of NIH show the best results from packing in as many treatments as you can -from keeping drug resistance at bay to lengthening the time period you can take a break. Although the thought of more (many more) infusions is not one I get all giggly about, the thought of all the treatments I've already been through being for naught is even worse. So as my girl Torrance Shipman says, "BRING IT ON!"

Cycle 7

2007-08-17T14:37:00.000-04:00

So I just got home from my seventh cycle of chemotherapy. The fevers haven't started, so let me tell you the good news before I fall into my 2 days of self-pity and growling temper. (I'm so fun to be around!)

Most recent MRIs:

~~Although I only have the exact results from my chest MRI~~, (they all just went online) I was present when the radiologist filled in my oncologist with the results of the pelvis and abdomen ~~(they just need to be written out still)~~. The overall results continue to show a decrease in all tumors and no new lesions since I started therapy. I don't want to sound Pollyanna-ish, and I know I've still got a long road ahead, but this is better news than anyone gave us any hope for at the start of treatment. Remember, we were hoping for just a stop in growth and a palliation of the side effects. We got both of those and some backtracking thrown in for good measure!

You can click here or on the chart above to see the "Tumor Chart" they made. There are a lot more lesions than listed, but they take these markers as representative of the lot.

Other good news:

No Neulasta shot this weekend. So no intense bone pain next week! I'm guessing I will have to get in for my 8th cycle, as its been one off/one on so far. But I'll take a week off anyway I can!

What's ahead:

We also decided that it was time to give my body a break after the next (8th) Cycle. How long a break will depend on how lesions respond without treatment, how fast they spring back, and how soon they start sending out chemicals into my system. I don't know what other folks get when they are on my particular mix of chemo drugs, but everyone says I'm on a heavy, heavy dose, and that my body deserves (demands) a rest at this point. Its exciting news, not having to go through the side effects, sit in that chair for two full days, have my life stop for 5 days every three weeks..., but its also a bit scary that we're stopping something that seems to be working for me.

Wish me luck over the weekend. ~~Pop (my dad) is coming up for a visit next week.~~ I should be back in full swing by then and then its back to school (love my job, but man this summer flew by way to fast).

NIH Pheo Conference

2007-08-12T19:25:00.000-04:00

In case your interested, NIH is hosting a 2-day conference on Pheos.

The conference is "focused on providing comprehensive and up-to-date information on the diagnosis and treatment of those suffering Pheochromocytoma. We will also continue to focus not only on providing a forum for the exchange of medical information but also information of value to patients, family members, and care givers. First and foremost this conference is intended to be a "bringing together" and a "sharing" as well as a forum for learning for all of the communities impacted by Pheochromocytoma."

Click here for more info and registration materials (its free). I have chemo that weekend, so will not be able to attend.

Latest Numbers

2007-08-11T18:52:00.000-04:00

Sorry for the delay, but I've finally posted my latest chemical markers. Click the link (top right) or here. My Chromogranin A numbers continue to decline, but my normetanephrines took a slight jump. I'll find out what this might mean on Thursday as I'm back for my 7th Cycle!

Fanilow

2007-08-04T20:45:00.000-04:00

We'll be out of town for a couple days. Off to see Barry Manilow in Vegas. I'd tell you all about it when i get back, but it has to stay in Vegas!

Cycle 6

2007-07-27T20:08:00.000-04:00

Finished my sixth cycle of chemo today. That brings me up to 4 months. And the latest news is...

End date: Not yet. At this point we will continue with treatment. My main question going into this week's appointment with my oncologist was "Why stop now when things are going so well?" Paraphrasing Kenny Rogers, we decided to know when to hold 'em. I will have another set of MRIs over the next two weeks (every three cycles) to see if the tumors are still shrinking. We will also try to bottom out my pheo markers before taking a break from therapy. This weeks numbers will be back on Monday and I will post them here. So far its been a continued decline and we will keep going until it flat-lines (not the best term in this topic I guess). It's not as exciting as taking a chemo break, but it makes the most sense.

Neulasta: Yup. I have to get another shot tomorrow (see post below about my last shot). At least this time I know what to expect. Of course, that also means I will be thinking about it (the pain) the whole week. I have a shiny new prescription for oxycodone though!

Check back on Monday to see my latest lab results.

The Gays Are Getting Married

2007-07-25T09:49:00.000-04:00

And the anti-gay forces are taking the summer off! The folks at VoteOnMarriage announced that they would not push for another round of hate until 2012, skipping a chance at the 2010 ballot. If same sex marriage didn't send the sky falling by now, do they really think that five more years and hundreds of more marriages will make people think 'hmmm... those committed queers really are ruining society.' Remember, Brian Camenker told us he could correlate gay marriage to homelessness, the drop in air quality, and the increase in the crime rate, let alone the destruction of the "family." Here's a fun video lampooning this whole notion that same sex marriage will ruin the "normal" family. "It's All Because" by Oded Gross.

Let The Bodies Hit The Floor

2007-07-18T14:02:00.000-04:00

Completely off topic. But I've been fascinated by televangelist Benny Hinn for years now. He hosts This Is Your Day on TBN, where he sits in front of a 75 square foot coffee table of sorts made out of letters and prayer request sent to him, and holds "Miracle Crusades" in huge stadiums around the world where he "heals" people.

So, imagine my delight when I came across this music video that some extremely witty college kids put together. The music is Drowning Pool's "Let the Bodies Hit the Floor" (yeah, I never heard of them either); the images are all Benny Hinn. Enjoy

$$$

2007-07-10T16:16:00.001-04:00

Its been a while since I calculated the money spent (or at least collected) since I started with my pheo in 2001. Luckily, Beth Israel has all its record on-line, so I can see what they are charging. I'm sure these charges fluctuate depending on what kind of insurance you have and a thousand other different factors. Also, I assume at the insistence of the doctors, the only charges listed pertain to drugs, beds, room/board, OR fees, etc. No doctor/surgeon fees are listed. I can only imagine what they are! After watching Sicko, Michael Moore's new movie, I continually thank my lucky stars that I have health insurance and that it is a group plan. Otherwise they'd be coming after me something fierce. So my new total as of today...

$221,891.74

Now I see why people sell their homes (or take a boat to Cuba)

Nostril Hair

2007-07-08T11:49:00.000-04:00

Once the unsightly, bane of my existence, oh how I do now miss it so. It would seem that even though I still have to shave everyday and have about 75% of the hair still left on my head, I've lost all the hairs in my nose! Yay, no more plucking, or trimming! At least that's what you would think. Once you don't have them anymore, the hairs in your nose take on a very important role in you daily life that theretofore I did not realize. For starters, when you nose runs, which it does constantly, there's nothing there to sop it up. You nose, for instance, in running right now, only you don't realize it. Who do you thank? You nose hair! And allergies. Ugghhh. Don't even get me started. This year has been bad for everyone, but now I realize why its been so particularly difficult for me. No filter in there. Every particle, be it dust, pollen, mildew, mold spores, tree, grass, weeds, dander... everything blows right up my nose.

Just a short rant. Thanks for listening.

LiveEarth 7.7.07

2007-07-06T18:05:00.000-04:00

Tomorrow is the worldwide Live Earth concert. As I will probably be feverish and stuck inside, I plan on watching the entire event. Here are the actions I pledge to take. Care to join me?

1. Measure your carbon footprint and reduce your environmental impact. Mine is 215 with a carbon output of 4.6 tons a year. This is the first step in making simple, everyday changes such as...

2. Change 5 light bulbs to CFLs (compact fluorescent lamps). If you shop Ikea, its the Sparsam line.

3. Bag the Habit - Take reusable bags to the grocery store. Globally, we use as many as 1 million new plastic bags every MINUTE.

4. Find more solutions here.

Shrinking

2007-07-05T15:32:00.001-04:00

Cycle 5 today and two bits of good news.

1. I don't have to take the Neulasta shot again this weekend. So no jackhammers going off in my bones next week.

2. Pleliminary results are in for the latest MRI's and they look better than any of us had originally even hoped for. The goal of the chemo was mainly to keep the tumors from spreading and growing.
Well, if these results pan out, they are actually shrinking in size. They still need some more reviewing and then I need to sit down and really hash out what all this means, but my oncologist is thinking that with these strong results, we may be able to stop therapy after my sixth cycle to give my body a break. These results fit perfectly with both my increased activity/stamina/strength level and the decrease in the chemical markers. Again, this is preliminary, but very hopeful.

ps. the above is an optical illusion. Get close to your screen and stare at the center of the the image for a minute or two. Then look away at a nearby object. It should look like it is changing just like my tumors.

Happy Fourth Everyone!

2007-07-04T07:39:00.000-04:00

Neulasta Update

2007-06-24T07:41:00.000-04:00

Well, as quick as it came, so quickly it went. My bone pain lasted for exactly 24 hours. No lingering - it was there one moment and completely gone the next. Of course, I did keep popping those oxicodones for a while after just in case. Luckily the pain left just in time for me to head to the Cape with Anne, Lisa, and BeBe (Dan joined us later in the weekend). Let's hope we don't have to get another shot next round.

F*** This Hurts!

2007-06-20T14:45:00.000-04:00

Now as a school teacher, I often am telling my kids to use more elaborate, interesting, detailed language than common cuss words. But in this case... I am in some f****in’ pain! After last week’s chemo (Cycle 4 - if you’re keeping track), my white cell counts were a little low. Not in the dangerous level, but not up to my high standards. So to compensate, on Saturday I got a little boost with a drug called Neulasta. Notice the woman sitting, smiling, and painting on their website. Look into that face. Look at her expression. It’s saying “Don’t believe a word you’re about to read, child. This shit will knock you down like a Mack truck.” And that’s exactly what it did. To the drug manufacturers, “mild bone pain,” clearly means having a sledge hammer slammed into your lower back and sternum every half a second. “Well tolerated” = trying to walk around with the bones in your thighs splintered into 20 razor sharp shards. And don’t even get me started on “pain was controlled with non-narcotic analgesics.” Yeah, and you can clean up the blood from an shotgun blast with a wet-nap. I’m on double doses of oxicodone and Tylenol and I still feel like there are 5-10 explosions going on inside my chest, pelvis, and legs every four and a half seconds.

Anyway, thanks for letting me rant. Send yout best wishes, Reiki treatments, voodoo jive, Harry Potter magic spells... anything! my way. I’ll try it all. Anne suggests an epidural and trust me if I could find a doctor to give it, I’d take it.

Now I'm Not A Doctor...

2007-06-16T14:43:00.000-04:00

I threw together this little graph. These two tests are indicators of the tumors’ affects on my body - how much crap they are giving off at the moment, and by extrapolation one guide to show us how well/poorly I’m doing.

The graph begins not long after I was diagnosed with metastatic extra-adrenal paraganglioma (pheo) - a recurrence of my cancer, spreading through various and sundry parts of my body). First notice the rapid rise in both my Chromogranin A and the normetanephrines. The last increase and the beginning of the continued decline in these tests start on the first cycle of my current chemotherapy regimen. A sharp drop at the start, but still a steady decline since then. Hmmm, maybe those doctors actually know what they’re talking about.

The Port Is In

2007-05-24T14:42:00.000-04:00

So today was my first day with my new port. It’s the coolest thing ever! I’m like the Bionic Man although I can’t leap over anything, or have any real interest in capturing the bad guys. Nut I do run in slow motion. But anyway, just a quick jab of the device you see above and I am set to go. Want some blood? Go ahead use my port. Need to give me chemo? Fill me up baby! When you’re all done, all I’m left with is a odd shaped bump under my skin about 4 inches above my right nipple. Wanna see? I love to show it off.

Ouch!

2007-05-22T14:40:00.000-04:00

So I had my port placed yesterday. The idea is that now I won’t have to get stuck in my arms anymore when I get infused or when I give blood (which can add up to 6-7 pokes a week). The procedure was extremely easy. They wheeled me into the OR, gave me a local in my right shoulder and knocked me out, and before I knew it I was saying to the doctor that I had two more questions I had just thought of and he replied that I could ask, but the surgery was already done. Everything was extremely rosy...

Until I got home. Wow did it start to hurt. Even after downing my oxycodone, it was sore, swollen, and bruised. The pain continued through today and finally started dissipating this afternoon. Now my shoulder is just really stiff and I can’t put any weight on my right arm. I have my next round of chemo on Thursday and they say they will use it for the first time, but right now I can’t see having a needle stuck through my skin into it. We’ll see.

New Apartment

2007-05-20T14:38:00.000-04:00

Sorry about the lack of posts. We’ve been busy moving into our new Brookline apartment. 1688 Beacon Street #19, Brookline, MA 02445... in case you want to send a housewarming gift! Check out the new pad in the photos section.

Have been humming along relatively well and am about to go in for round three of my chemo therapy. Still no major side effects other than my fevers for the first 72 hours after my infusion. No one seems to have a plan yet for when they come other than what we’ve been doing - calling the on-call oncologist, heading to the ER, getting lots of testing done, and being sent home. Hopefully more news when I meet with my oncologist again this week.

Tomorrow I am having a port put in. It’s a half dollar sized. 1/4 inch thick catheter that sticks out of my chest and winds its way down my vein (artery?) so that my infusions can go directly in and blood can be drawn from it. Should save on needle jabs as well as being a conversation piece at the pool. Only a 90 minute procedure and I head back home, but I do have to be knocked out. I’ll report back when its all done.

Hatfields & McCoys

2007-05-18T14:36:00.000-04:00

Thanks to Karl for the following tidbit...

The headlines read like something out of the Enquirer:

Hatfield-McCoy feud blamed on ‘rage’ disease

Seems that the famous McCoy family has Von Hippel Disease, a leading cause of pheochromocytomas. Doctors have been following the descendants for 20 years and finding that large percentages of them have pheos. There is some discussion as to whether the side effects (blood pressure, panic attacks, too much adrenaline...) could have helped keep the feud going (it started over a presumed stolen pig). Here’s MSNBC’s coverage (click for a direct link):

The most infamous feud in American folklore, the long-running battle between the Hatfields and McCoys, may be partly explained by a rare, inherited disease that can lead to hair-trigger rage and violent outbursts.
Dozens of McCoy descendants apparently have the disease, which causes high blood pressure, racing hearts, severe headaches and too much adrenaline and other “fight or flight” stress hormones.
No one blames the whole feud on this, but doctors say it could help explain some of the clan’s notorious behavior.
“This condition can certainly make anybody short-tempered, and if they are prone because of their personality, it can add fuel to the fire,” said Dr. Revi Mathew, a Vanderbilt University endocrinologist treating one of the family members.
The Hatfields and McCoys have a storied and deadly history dating to Civil War times. Their generations of fighting over land, timber rights and even a pig are the subject of dozens of books, songs and countless jokes. Unfortunately for Appalachia, the feud is one of its greatest sources of fame.
Several genetic experts have known about the disease plaguing some of the McCoys for decades, but kept it secret. The Associated Press learned of it after several family members revealed their history to Vanderbilt doctors, who are trying to find more McCoy relatives to warn them of the risk.
One doctor who had researched the family for decades called them the “McC kindred” in a 1998 medical journal article tracing the disease through four generations.
“He said something about us never being able to get insurance” if the full family name was used, said Rita Reynolds, a Bristol, Tenn., woman with the disease. She says she is a McCoy descendant and has documents from the doctor showing his work on her family.
She is speaking up now so distant relatives might realize their risk and get help before the condition proves fatal, as it did to many of her ancestors.
Back then, “we didn’t even know this existed,” she said. “They just up and died.”

Angry tumors and tempers

Von Hippel-Lindau disease, which afflicts many family members, can cause tumors in the eyes, ears, pancreas, kidney, brain and spine. Roughly three-fourths of the affected McCoys have pheochromocytomas — tumors of the adrenal gland.
The small, bubbly-looking orange adrenal gland sits atop each kidney and makes adrenaline and substances called catecholamines. Too much can cause high blood pressure, pounding headaches, heart palpitations, facial flushing, nausea and vomiting. There is no cure for the disease, but removing the tumors before they turn cancerous can improve survival.
Affected family members have long been known to be combative, even with their kin. Reynolds recalled her grandfather, “Smallwood” McCoy.
“When he would come to visit, everyone would run and hide. They acted like they were scared to death of him. He had a really bad temper,” she said.
Her adopted daughter, another McCoy descendant, 11-year-old Winnter Reynolds, just had an adrenal tumor removed at Vanderbilt Children’s Hospital. Teachers thought the girl had ADHD — attention deficit hyperactivity disorder. Now, Winnter says, “my parents are thinking it may be the tumor” that caused the behavior. “I’ve been feeling great since they took it out.”
Her adoptive father, James Reynolds, said of the McCoys: “It don’t take much to set them off. They’ve got a pretty good temper.
“Before the surgery, Winnter, when we would discipline her, she’d squeeze her fists together and get real angry and start hollering back at us, screaming and crying,” he said.
As for the older McCoys, “they just started dropping dead of the tumors,” he said. “They didn’t know what it was. A name wasn’t really put on the disease until 1968. That’s when one of my brothers-in-law had to have surgery, to have some tumors removed in his brain. They started to notice tumors occurring in each of the family members.”
Dr. Nuzhet Atuk at the University of Virginia in Charlottesville and geneticists at the University of Pennsylvania studied the family for more than 30 years, Rita Reynolds said.
'Madness disease'

“They went back on the genealogy and all of that stuff,” she said. “They called it madness disease. They said that it had to be coming from the VHL. Our family would just go off, even on the doctors.”
Now 85 and retired, Atuk said he could not talk about his work because of medical confidentiality.
Rita Reynolds had two adrenal tumors removed a few years ago. Her mother and three brothers also had them. So do McCoy descendants in Oregon, Michigan and Indiana, she said.
“When you have these tumors, you’re easy to get upset,” said Rita’s mother, Goldie Hankins, 76, of Big Rock, Va., near the Kentucky-West Virginia border. “When people get on your nerves, you just can’t take it. You get angry because your blood pressure was so high.”
Still, many are dubious that this condition had much of a role in the bitter feud with the Hatfields, which played out in the hill country of eastern Kentucky and West Virginia for decades.
Some say the feud dates to Civil War days, when some members of the families took opposite sides. It grew into disputes over timber rights and land in the 1870s, and gained more notoriety in 1878, when Randolph or “Old Randal” McCoy accused a Hatfield of stealing one of his pigs. The hostilities left at least a dozen dead.
“The McCoy temperament is legendary. Whether or not we can blame it on genes, I don’t know,” said Ron McCoy, 43, of Durham, N.C., one of the organizers of the annual Hatfield-McCoy reunion. “There are a lot of underpinnings that are probably a more legitimate source of conflict.”
“There was a lot of inter-marrying” that could have played havoc with the gene pool, he conceded.
Another relative, Bo McCoy, of Waverly, Ohio, said he had never heard talk of the disease although he has been diagnosed with a different adrenal gland problem — Cushing’s syndrome.
'Truce' signed in 2003

Even Reo Hatfield, who drafted the “truce” the two families famously signed in 2003 to officially end hostilities, doubted the role of the McCoys’ disease in the feud.
“I would be shocked” if doctors blamed it on illness, he said.
Altina Waller, a professor of history at the University of Connecticut and author of a book about the feud, agreed.
“Medical folks like to find these kinds of explanations. Like the Salem witchcraft thing. That book came out about how that was caused by wheat that was grown that had this parasite or mold or fungus or something that caused everybody in Salem to go nuts,” she said.
“How does it explain the other dozen or so feuds that I’ve looked at in other places?” she asked, citing disputes over coal and other issues. “The rage and violence as such was not confined to McCoys.”
She acknowledges that an argument could be made for seeing the McCoys as the more aggressive of the clans.
“One of the reasons the McCoys don’t like me as much in the Tug Valley as the Hatfields do is that I seem to suggest that Randal McCoy, the patriarch of the family, was sort of irrational and flamboyant and did jump to, into wanting violence more than, say, Anderson Hatfield,” Waller said.
These days, the “feud” has taken a far more civil tone and all but disappeared, members of both families say. The last time it surfaced was in January 2003. McCoy descendants sued Hatfield descendants over visitation rights to a small cemetery on an Appalachian hillside in eastern Kentucky. It holds the remains of six McCoys, some allegedly killed by the Hatfields.

2 Weeks Out and Feeling Fine

2007-04-26T14:34:00.000-04:00

Not to jinx anything, but I have to say that I’m amazed at how well I’m doing. No nausea, fatigue, and I still have my hair!. Even the constipation issue seems to be resolving itself, although Benna seems to be having sympathy constipation for me. I’ve been back to work for two days now and things are going smoothly - not overly tired when I get home (which I expected) and I enjoy not feeling stuck in the house.

With one week left until Cycle 2, I can only hope for more of the same. With one infusion under my belt I think we will also know better what to expect and how to preempt some of the low grade side effects from last time.

Bebe

2007-04-21T14:32:00.000-04:00

Nothing can make you feel better than the spry little bundle of joy that is BeBe. She was in complete control in the back yard today.

Medical updates:

My blood counts so far have been holding steady. Obviously some changes in white blood counts, but nothing drastic or unexpected. Phosphorus levels have dropped - not even sure what phosphorus does for you, but am taking extra to boost my levels back up. Still constipated, but had to expect that as they sent me home with more meds for that than everything else combined. My next set of labs will be on Monday and they will tell me if I am able to go back to work. So keep your fingers crossed.

First Visitors

2007-04-20T14:27:00.000-04:00

All things considered, I feel much better than I ever could have anticipated. I think the lack of nausea, for one, has done more for my spirits than anything. It took me until about Wednesday to eat my first full meal. Until then it was milk shakes, juice, and Boost - which if you know my diet, made me more than happy. I decided I needed to add some protein, so I started making myself some lemon chicken in the microwave (yummy!) - chicken breasts, salted and peppered, cover with some slabs of butter and sliced lemons; microwave covered for a couple minutes and you get tasty moist chicken. Just add egg noodles and it is now my favorite meal.

So as the physical aspects seem to be moving along better than expected, it is still hard on the emotional side. Not so much any effects of the chemo, but the draining aspect of having to constantly tell each new person the whole story. Until today, I’ve avoided most people (I’ve also been busy running back and forth to the hospital for tests). But today I had two playdates. With this first beautiful day in a long while, I headed over to see Kathy. We walked to Starbucks (my first real exercise) and then sat on her stoop and talked for a long time. It was good to be out in the sun and even better to see Kathy again. I’m excited that our new apartment is right around the corner from her. More stoop sitting followed - this time on my own steps. Deanne stopped by and we watched the South End go back and forth as we chatted.

Patriot's Day

2007-04-16T14:26:00.000-04:00

Patriots’ Day...Otherwise know as the Boston Marathon. Been hanging low for last few days. Checking temperature religiously. Enjoying the Tylenol I can take as its usually a big no no for chemo patients.

PS. The Colon Blow does exactly what the name implies! :(

Emergency Room

2007-04-14T14:23:00.000-04:00

Okay. So Beth Israel’s ER doesn’t look like this, but I did spend most of my first day back in Boston in the ER. After running two consecutive 100.4 degree fevers (the dreaded cut-off point), I headed to the ER to make sure I was not riddled with infection. After approximately 25 vials of blood, 2 bags of fluids, a chest X-ray, and various other tests, we didn’t know any more than when I came in. I did not have an infections, but we still hadn’t gotten the fever down and by now my heart rate and blood pressure were skyrocketing (partially because I was so late in getting my meds). The only thing we learned (close your eyes if you’re squeamish) was that my bowels were completely full to overflowing - a common side effect of one of my chemo drugs. It was back home for rest and some Colon Blow to open me up.

Cycle One

2007-04-13T14:15:00.000-04:00

Well, my first chemo treatment is over. At least the jabbing and dripping part of it. Who know what will come next. I’ve got three weeks until the next cycle. Plenty of time to feel wonderful and energetic or completely drained, lightheaded, and nauseous. The good news is that i did not get sick yet. My oncologist says the first 72 hours are the worst for nausea and I’m almost through 36 of them. No appetite, but at least with nothing going down, nothing is coming back up.

Funny story. Treatment was really long. From 8 am to 5 pm the first day. What’s that? 9 hours? Second day was meant to be shorter. About 8 to 11. At about 1:30, Dan and I went for a walk up and down the halls just to stretch a bit and happened upon my nurse (who is never more than 5 feet away from me). “Boy you two must really like it here!” says she. Puzzled look from both of us. “You’ve been hanging out for an extra hour and a half!” Yeah, somehow we missed that! And they are so thorough there that we are both sure they told us. I can at least blame it on chemo fog.

Karl and Laurie (brother and sister) were amazing as usual. Homemade meals when I could eat. Chilled bottles of Boost when I couldn’t. Thanks again guys!

So now we prepare to head home. Thoughts of a bald head, airplane sickness bags, the 12 pounds of prescriptions I have to get through security fly in and out of my head. But most of all I just want to get home and see Benna!