Tuesday, February 23, 2010

How to get pictures of your surgery....

A few people asked me how I managed to get pictures of my surgery--I just asked my doctor. I told him I was documenting and publishing my journey. He thought that was cool. He and his physician's assistant Karen took the pictures that I posted on Flickr. I imagine some doctors might not want to do this, and some hospitals probably have policies against it (for legal reasons) but Dr. Fournier had no problem with it.

It may have helped that he declined my first few requests: to have a lightning bolt shaped scar, or to make it look like a shark bite. Those requests may have softened him up a bit....


Monday, February 22, 2010

On boredom...

Coincidentally (are there such things?) I stumbled upon an article about boredom, cited in the Chronicle of Higher Education's Arts & Letters Daily (a great site to find unusual articles). I've been telling people since my return that we all wish for free time, and then when you have it, but really can't do much with it (like me right now), it drives you batshit crazy.

What I'm experiencing is different than what Aussie writer Colin Bisset calls "grand boredom," then. Writing in Philosophy Now, Bissett says:
Like melancholy and its darker cousin sadness, boredom is related to emptiness and meaninglessness, but in a perfectly enjoyable way. It’s like wandering though the National Gallery, being surrounded by all those great works of art, and deciding not to look at them because it’s a pleasure just walking from room to room enjoying the squeak of your soles on the polished floor.... 
...It’s about a certain mindset. Perfect boredom is the enjoyment of the moment of stasis that comes between slowing down and speeding up – like sitting at a traffic light for a particularly long time. It’s at the cusp of action, because however enjoyable it may be, boredom is really not a long-term aspiration. It’s for an afternoon before a sociable evening. It marks that point in a holiday when you’ve shrugged off all the concerns of work and home, explored the hotel and got used to the swimming pool, and everything has become totally familiar. ‘I’m bored’ just pops into your mind one morning as you’re laying your towel over the sunlounger before breakfast, and then you think ‘How lovely.’ It’s about the stillness and familiarity of that precise moment before the inevitable anxiety about packing up and heading back to God-knows-what. (Full essay here.)
Ahhh, that's it. It's hard to get that type of exquisite boredom in my circumstances because my ability to balance the boredom with physical or mental action is limited right now, as I still get tired easily, both physically and mentally. Or is that just an excuse?

I think I've been in tune with Bisset's "grand boredom" idea for some time. For example, I've always been a proponent of what I view as the "European style" vacation--heavy on the relaxing, meandering, slowness, to the point that at the end of your vacation you are ready and willing to go back to your "real world." In contrast, I've always been slightly annoyed (okay, more than slightly) by the "U.S. style" vacation, which consists of running around frantically to visit as many crowded and overpriced tourist sites as can be fit into a 5 day stretch. And then with one day on each end for frantic and stressful travel, there you have your typical 7 day "U.S. style" vacation. Who is rested after that? I don't want to sit and stare at the walls on vacation, but I'd rather walk and look without an agenda.

Bisset also writes about the wonderful boredom he experienced as a child (wow, does that bring back memories). I think it is good for kids to be bored every once in a while. I refuse to constantly play cruise director for my kids.

I go back to work next week. I am really, really, looking forward to it. And then I will be able to enjoy being bored again, but in a productive manner. As Bisset says:
"Wasn’t Newton sitting underneath an apple tree staring into space, and Archimedes wallowing in the bath, when clarity struck? In my own insignificant way, I think I have always understood that doing nothing is the key to getting somewhere."
My dog understands that....

Friday, February 19, 2010

And the sun comes up again...

After such a serious post, here's a chaser. A beautiful, clear morning down at the Weather Center Cafe, along the river. I try to get out of the house a few times a day and go somewhere to take care of emails, etc., and break up the monotony. It was just such a nice morning, I wish I could have sat outside.... I can't wait for spring.

- Posted using BlogPress from my iPhone

Wednesday, February 17, 2010

Navel gazing....

This is a really tough entry to write, I've been thinking about it for a long time, but it came back up again today.

I'm a fairly active participant on a Yahoo bulletin board for PMP patients and/or caregivers. It's called the PMP Belly Button Club, in reference to the fact that many people end up losing their belly buttons as part of the big surgery.

(An aside--native Americans in the Southwest, I don't recall exactly which tribe, could tell ghosts apart from humans by looking for belly buttons. If there was no belly button, it was a ghost. I managed to keep my belly button, although the scar as it is healing kind of intrudes on it, partially concealing my original navel, but in a way right now making me look like I have two belly buttons. So what the hell does that say about me?)

Back to the website--it has been incredible, a godsend. The amount of information, support, laughs, and friendship I have received from those people is amazing. But you get a heck of a lot of perspective, too.

Someone will post a message that their two or three year anniversary CT scan was clear, and that all looks good. Other members will reply with congratulations and levity. Then, a few posts later, you'll see the dreaded "another angel among us" subject line or another re: line that makes your stomach drop, and that means a member has died. Sometimes another member will have noticed that someone hasn't posted in a few months, they do some research and make some calls, and find out about the death. Or the caregiver of the patient will post with the sad news.

Today was another one--a gentleman named Bob, who is married to a member named Lynda, passed away earlier today. We all knew it was coming, for the past week or so. I didn't know them but through the website, but they were a mainstay of the PMP online community. Of course, Lynda still is, her advice has helped countless people. So selfless.

It's so damn frustrating, and makes me so angry. No matter the age, it's just not fair. And selfishly, it's frightening, too, as many of these people are my age with the same diagnosis--and suddenly, or not so suddenly, they take a turn for the worse.

They are all sad, but one that hit me particularly hard was the death of a member named Jean Gasbarro. She died on December 4, 2009. 39 years old. She fought PMP for something like 7 years, with multiple surgeries. I never interacted with her, but found her blog referenced on the Yahoo site; it is the digital footprint or echo of a now-dead person. Heartbreaking. She wrote for years about about her travels, her husband, decorating her new home, Christmas, and yes, her cancer. They are the words of someone who was Alive, written in such an active and passionate voice, so funny and literate, scared and hopeful, and now she is dead. It just makes me sad and pisses me off at the same time.

Monday, February 15, 2010

anonymous comments

Occasionally someone will post a comment without a name or email address, and some of those people have been following this site because they or a loved one of theirs is going through, or about to go through, the same surgery and treatment.

I just wanted to use this entry to wish them well, and to say contact me if you have any questions, I'll answer whatever questions I can. I received so much help, information, and encouragement from people on the internet that if I can help anyone else I will.

Best to you all...


Friday, February 12, 2010

Finally, photos of my surgery!!

That's my actual surgery. I put the rest on Flickr, with the really gross pictures about half way through the set... Click on this: FLICKR PICS

Reading material

I'm a little behind on all the books I got as gifts for my recovery
period. Not to mention the magazines.

Tuesday, February 9, 2010

Random Thoughts

Like my other posts aren't random....

1. Resting: I probably pushed it too hard yesterday, even though I didn't do much, just got the kids to school, hit the grocery store with my mom, unpacked, went through mail, etc. Very tired today, it's weird how I can feel so weak on such short notice. It's like someone turns up the gravity all of a sudden. I look for the nearest horizontal surface.

2. Neighbors: they already have a schedule of when they will bring meals over. How lucky am I? Sheboygan....

3. Prayer: so many people told me they were praying for my wellness and recovery. It definitely made a difference, I felt so...reassured. I'm still not certain how all that works, whether people's prayers are routed through and boosted by a bearded man in a robe up on a cloud, or if my just knowing about them made me feel better. All I know is that it made me feel stronger to know people were thinking of me in that way. So they worked, regardless of how or why. Probably not supposed to know. I'll just let that be and remain grateful. Thank you.

4. It's not over: I have to go to Houston every three months for a couple of years, maybe, then less frequently after that, to ensure the beast remains banished. Sneaky disease.

5. Prekky: kids got me a super cool St. Helens Saints rugby jersey for my birthday, the team Steve "Prekky" Prescott played for in the UK. He was diagnosed with PMP 4 years ago and given 3 months to live. He is still in great shape, fundraising in the UK to fight cancer. Awesome dude.

6. This blog: it probably won't be updated as frequently as in the past couple months, but I've really enjoyed writing it, and I've loved reading all the comments. Now the recovery period will probably be boring. It's a different type of stress, I dont like sitting around or napping. Feels wasteful. But I know I need to do it so I can become active again. We'll see about the blog. I may move on to another strange writing project. I do have some unresolved thoughts I am working through about some of my fellow patients and what they have gone through; I may try to write those out of my system here in the next few days. Thank you so much for indulging me. According to the stat counter, this blog has had about 4,500 different (unique) visitors since November 2009, and about 1,500 of those visitors came back more than once. Pretty cool.

Dan (my dog missed me, this is her pinning me down under my blanket so I can't get away again--she follows me everywhere now)

- Posted using BlogPress from my iPhone

Sunday, February 7, 2010

Going home.....

...after 35 days in Houston. I know this place has basically saved my life, but I won't miss it. It was the longest 35 days of what I hope is a long life, now.

I don't post a lot of pictures of me (usually just my feet), but here's one showing how happy I was last night, knowing I was going to see my kids again.

And here's one of me from a week ago, feeling a little different, like I was trapped.

That's actually my friend Blub, from the hotel lounge where I'd sit and read or watch movies on my laptop. Very friendly fish, a good listener. I guess he's smiling too, it looks like.

- Posted using BlogPress from my iPhone

Location:Holcombe Blvd,Houston,United States

Friday, February 5, 2010

If you know me...

...then you know someone who has actually, literally, been "eviscerated." Or "disemboweled." Like a tauntaun. Google those words.

Just thought of that, thanks to Jon Stewart on The Daily Show last night, talking about the word "eviscerate" as used by the press.

Thursday, February 4, 2010

Most recent medical news...

Had lab work and saw Dr. Fournier today. Everything looks great. Blood work was fine, and I'm cleared to go home Sunday!

He took out my last two tubes: my J tube (jejunostomy tube), which went directly into my small intestine for nourishment purposes, and the G tube (gastronomy tube). The G tube was the bigger tube, a release valve leading out of my stomach in case I didn't feel well, so I didn't have to vomit out of my mouth and blow out my belly or internal stitches (sorry, medical stuff is gross sometimes). Those were the last of the tubes. He said not to drink for a few hours after he pulled the G tube out of my stomach (which was a weird sensation), as liquid would drain out like it was a bullet hole in a Tom & Jerry cartoon. That's what he said. I didn't try it. But it looked just like a bullet hole.

So all told, tube-wise, I at one point had all of these: 1) a foley catheter, 2) a main IV line on my chest that led into my vena cava artery (right next to my heart, for crying out loud!), 3) a chest tube to drain liquid from my lung area, 4) the G tube, 5) the J tube, 6) another IV line my right arm, 7) some other type of IV line into my left wrist, and 8) the epidural in my back. So when I woke up from the surgery this was me:

These tubes were actually the suckiest thing about this whole experience. Well, that and being stuck here for over a month. And having cancer. Whine whine whine.

Dr. Fournier reviewed the pathology reports with me. There was no further evidence of tumor in the omentum, or in the other samples they took, except for in the diaphragm. But he got all the tumor off of the diaphragm, and he had removed it from the other places he found it, like on my liver and in my pelvic region (as described in this earlier post: http://www.oncoloblogy.com/2010/01/medical-stuff.html). So that is really good news. I have to come back to M.D. Anderson in April for another round of CT scans. 

But this is really good news. You never know, but for now things couldn't have gone better given my situation. 


Wednesday, February 3, 2010

Euchre god

10 - 0 win over the iPhone. I rule.

Is it Sunday yet?

- Posted using BlogPress from my iPhone

Location:Braeswood Blvd,Houston,United States

Some things are NOT just like riding a bike....

Last week I read Lance Armstrong's book "It's Not About the Bike." It's about his battle with cancer and his return to biking. Interesting. He is pretty honest to his nature throughout the book; he's actually seems to be kind of a jerk. But he was also very human in his response to learning he had cancer, I completely understood his feelings and reactions. He kept trying to deny it, to bike it away, telling himself, "If I keep moving, I'm not sick." But he was really, really sick.

I didn't know that he was that sick. His testicular cancer had metastasized to his lungs and brain. Very sick. His prickly nature came back during his treatment, and in particular when he decided to try to find the right doctor and treatment plan that would let him continue to race bikes, rather than destroy his lungs and thus his career. Being kind of a jerk probably served him well in that respect.

But I think the most revealing section of his book was when he wrote about the first months AFTER his treatment, returning to his real life. He failed at first. And he's open about it. After feeling a lot of dislike for him based on the chapters about his treatment, I found some respect and even sympathy for him. Is it hard to feel sympathy for a guy who's post-cancer life involved moving to France to ride a bike for a living? At first. Gee, what could be hard or trying about that?

But he failed, and he quit. He couldn't get back into it. Pulled over in the middle of a cold, rainy Paris-Nice race, and just gave up, right there, on the side of the road. Gave away his stuff, left France, and went back to Texas, eating Tex-Mex and drinking beer. He was thinking about going back to school, business school or something else like that. Left his bike in storage. All this is before the first of his seven Tour de France victories, mind you.

So what brought him back? I'm still kind of processing his story, but here's what happened: His entourage massaged his ego (having an entourage helps), telling him he had to ride one more big race to show he "came back" from cancer, and then he could retire on his own terms. They basically tricked him into training again. He slogged through for a while, but not wanting to be embarrassed in his last race, he went monastic, training hard core outside of Boone, North Carolina.

Then, the way Armstrong tells it, on one cold, rainy day, riding up a monster mountain, he suddenly reclaimed his mojo. It felt right, and good, and he could do it again. Here are his own words:
That ascent triggered something in me. As I rode upward, I reflected on my life, back to all points, my childhood, my early races, my illness, and how it changed me. Maybe it was the primitive act of climbing that made me confront the issues I had been evading for weeks. It was time to quit stalling, I realized. Move, I told myself. If you can still move, you aren’t sick.
I looked again at the ground as it passed under my wheels, at the water spitting off the tires and spokes turning around.... As I continued upward, I saw my life as a whole. I saw the pattern and the privilege of it, and the purpose of it, too. It was simply this: I was meant for a long hard climb.
I would have been pissed off, believe it or not, if from that magical point forward things were easy for Armstrong. I think it wouldn't have seemed real. But nothing in Armstrong's entire life seemed easy (read the book--I truly believe he fought hard for everything he has accomplished). Things weren't magical for him just because he felt like biking again, as he admits: "I didn't just jump back on the bike and win. There were lots of ups and downs, good results and bad results, but this time I didn't let the lows get to me."

Like I said, I'm still processing his story. But I think I'm starting to get it--the patterns, the privileges, the purposes. Okay, I might like Lance now, I think, despite his faults (or strengths, as they may be).

Tuesday, February 2, 2010

Groundhog Day

I'm living that movie right now. But with less variety. Thursday I get to see the doctor. Change is good.

Not much to do but watch as my scars slowly heal. Slooowly. Almost imperceptibly. But they will heal up. Change is good.

Did I mention it is Groundhog Day?

- Posted using BlogPress from my iPhone

Location:Bates,Houston,United States