I feel your pain, Tony. Well, I will...

Warning: Long post ahead! If you aren’t interested in or are opposed to somewhat graphic medical, procedural and/or surgical details as well as candid commentary on said details, please stop reading now. The following is an update about my current medical situation and the resulting surgery that will be performed to rectify it. That said, here we go.

Note: Certain words or phrases are linked to further information or images elsewhere on the web. Links will open in a new window/tab for your convenience.

As some of you may or may not know, I was recently diagnosed with a desmoid tumor and have gone to consult with three different surgeons about it; general, thoracic and plastics. Since these blog posts get posted on Facebook as Notes and several of you comment and ask questions there, I will attempt to answer them with this post. Feel free to comment or ask more questions if you read this on Facebook (which is most likely because no one reads my blog).

Here’s the Q & A version:

Q: So what the hell’s actually wrong with you anyway?
A: I have a desmoid tumor growing out of the muscles that make up my abs. The tumor is “connective tissue” which means it is basically made up of tendon or some kind of sinew. Some friends have speculated that it might be my twin brother that was absorbed into my abdomen in the womb and that it may have teeth and its own spine, but I doubt that very much (thank you, Kristine) since the biopsy showed it to be connective tissue. It is approximately 8cm. They’ve likened it to the size of a baseball, a lemon, a small potato, etc. Plus: it is benign / non-cancerous. Negs: Desmoids tend to come back again and again, often for the rest of a person’s life and often more aggressive. It has been suggested by one surgeon that I be scheduled for MRIs every 6 months or so for life.

Q: What kind of surgery is it exactly? What are they going to do?
A: The procedure is describe as thus: “Wide Resection of Upper Abdominal Wall – Desmoid Tumor, Reconstruction with Mesh, Omental Flap” which basically means they will open my chest up just slightly below where my sternum and ribs come together in the front (thoracic cage), cut out the lower part of my breast bone and several ribs with a bone saw, remove a hefty chunk or all of the rectus abdominis muscle (“abs” or “6 pack” muscles) at the top, then proceed to remove the tumor and everything around it within 4cm – 5cm. The tumor is roughly 8cm itself and they need a “wide resection” in every direction around it to make sure they get every little part of it and anything it was attached to or might have been starting to grow into. So far, this will include a large part of my diaphragm and possibly a smaller lobe of my liver.  This will leave me with a rather large hole in my chest where the abs would have been. The thoracic surgeon will then let the plastic surgeon take over. To illustrate exactly what this will be like, here’s a rough sketch the first surgeon hastily drew on that paper they put over examination tables: Click Here.

The plastic surgeon will reconstruct my diaphragm with Marlex mesh (he said, “think screen door or the kind over a window, except stronger and much smaller”) as well as patch the sizable hole in my abdominal wall. To do the latter, more mesh will be used, then the skin that was originally opened and pulled back will be sewn or stapled closed (possibly both), or, if they had to remove a large oval of skin altogether, some kind of membrane called Integra (INTEGRA® Dermal Regeneration Template) will be stapled in place and left to heal for a while before a new skin graft is grafted to it. The graft will be performed using skin from my upper thigh.

Q: What about the sternum and ribs they cut out? Can they put them back?
A: Glad you asked. They will be reconstructed with some kind of cement. It was explained to me like this: “This glue is so strong, you could get hit by a truck and the only thing to get hurt would be the truck.” I was good with that. Let’s just paint all my bones with it while you’re in there, shall we?

Q: Why would they take a whole huge oval chunk of flesh off instead of just flapping it open and closing it later? Is a skin graft really necessary?
A: There’s a possibility they will be able to just flap it open and close it up, but there are a few factors that may prevent this possibility. The first being how close the skin is to the tumor. When the thoracic surgeon said they would take everything within 4cm to 5cm in every direction, he meant everything. He said, “Your first shot is your best shot at getting it all out of there the first time” and I can’t argue with that. Second, even if the skin can be left untouched and attached, it may not last the full length of the surgery and may have to be removed anyway. The surgery is slated for 5 hours “-ish.”

Q: When is your surgery date and where will it be done?
A: Thursday, February 25th, 2010 at U of M Hospital in Ann Arbor, MI.

Q: Who will be doing the surgery?
A: Dr. Mark B. Orringer – Thoracic surgery / Dr. Riley S. Reese – Plastic surgery. I’ve been told that Dr. Orringer is literally one of the best thoracic surgeons in the world. One receptionist told me one woman came all the way from Australia to have him operate on her. That and all the awards/honors he’s garnered over the years puts me more at ease about it.

Q: How long will you be in recovery?
A: They said I wouldn’t be 100% for several months and likely not driving anywhere or lifting anything for at least a month or so, easy. I will likely have physical therapy. I’m currently stocking up on movies I haven’t seen yet and backlogging series I never got to follow for all that time I’ll spend on the couch.

Q: How much is it going to cost? Do you have insurance?
A: For all I know, it will cost somewhere between a buck fifty and one hundred bazillion dollars. And yes, I have medical insurance because without it, I would have had to sell my computer and cell phone by now and I wouldn’t have been able to write and post this.

Q: Are you scared?
A: I am utterly terrified and though I’m not afraid of dying on the table or anything like that, I do know that my life is about to change in all sorts of ways. I mean, I will have a permanent indentation in my chest, even after the skin heals over (think Iron Man’s Tony Stark without the shiny Arc Reactor thing and way less cool). I will have some gnarly scars to tote around. I will likely scare little children at the beach. There’s also the possibility (actually, likelihood) of more tumors and surgeries in the future, some of which may not be as deeply seated as this one. Desmoids are often found growing just under the flesh which often looks like a massive goiter-type growth. That’s usually when they take it out skin-and-all as I mentioned earlier. But, this is something I’ll have to learn to live with so I might as well start now with posts like this, eh? Also, I’m allergic to pain and if all this doesn’t sound painful, I don’t know what does (except, of course, child birth. There, I said it. Happy, women?)

Also, when Dr. Orringer was explaining how the surgery would go and what to expect, he used phrases like “it will look like a cannonball hit you” and likened the process to cleaning out a pumpkin to use as a Jack-O-Lantern. Yes, really. Cut a large circle, remove it completely, and scoop out everything that isn’t supposed to be in there including a wide breadth around it in all directions. Yeah, just like that. Sure, 12cm-13cm total (8cm tumor + 4-5cm resection) doesn’t seem all that big, but you carve a 5 inch circle out of your chest and scoop everything out of the hole and tell me how it doesn’t seem all that big anymore.

Dr. Riley also had the same weird, sick sense of humor I do about it, but also fixed his eyes sternly on me at one moment and said, “Don’t get me wrong. This is major surgery.” I think I almost threw up right then.

Sometimes I think about what its going to be like not having a huge chunk of ab muscles. Will I be able to stand the same? Walk the same? Can I sit up from slouching on the couch all by myself? What’s getting out of bed going to be like? I should probably ask the physical therapists this, but as of this posting, I just don’t know yet and I have to wonder. Also, how will rebuilding my diaphragm with mesh affect my breathing? Is my career as an opera singer over prematurely? How many more of these damned tumors am I going to have to endure? You know, things like that.

I hope I’ve answered all the questions I’ve been posed in earlier comments and status updates as well as some you hadn’t asked yet. Again, if there’s anything else you’d like to know, feel free to ask.

Thanks for reading!
-Derek and the Manbaby

Source: WrongCards.com

Back story:

I went into the hospital on Sept. 22nd with kidney pains and other urinary-type problems. I also had a fever of almost 102F, so they admitted me. While I was having blood taken, they decided to do a CAT scan to check out my kidneys. About an hour or so after the CAT scan, a resident came around and told me they found a “mass” roughly the size of a lemon or small potato just below my sternum about where my stomach is. Over the coming days, I had two ultrasounds and a biopsy. The ultrasound is when we started calling the “mass” Man Baby. It has been known as such ever since.

The mass, as I would later find out, was thought to be made up of “connective tissue” and resides between the layer of muscles over my stomach and chest and the sack that holds all my guts in. Tasty, no? That is good news, I am told, since growth or tumors in that area are rarely the kind that grow on organs and are generally benign.

Flash forward to today, Sept. 30th. I go to get my biopsy results and the doctor is rather impressed as she tells me what I have. I was impressed as well after she told me. Man Baby is actually a desmoid tumor.

What’s so interesting about a desmoid tumor? Well, a few things. For one, it is very, very rare. I heard I might be the first documented case at U of M. That may not be true, but it does speak of how rare Man Babies like mine are. “They account for about 0.03 percent of all neoplasms and less than 3 percent of all soft tissue tumors. The estimated incidence in the general population is two to four per million population per year, which in the United States translates into approximately 900 new cases annually.” That’s according to one medical publication.

Weirder still, they are more common in women than man, and even more common in pregnant women than anyone else.

The good news is that desmoid tumors are benign, slow-growing and generally easier to remove than other kinds of tumors. The bad news is that “they are locally aggressive and have a high rate of recurrence even after complete resection. Tumor-related destruction of vital structures and/or organs can be fatal, particularly when these tumors arise in patients with familial adenomatous polyposis (FAP, Gardner’s syndrome).” I do not have Gardner’s syndrome or anything like that, so I’m pretty optimistic about removing it. The consensus is that I will have a CAT scan about every 6 months to make sure more aren’t coming back and if they are, how they are growing.

As it stands right now, I have an appointment in late November for a consultation with the surgical department at U of M hospital. I will be checking back earlier to see if there are any earlier openings. I’m relieved and thankful and all, but the earlier we can get Man Baby aborted, the happier I’ll be.

More as it develops (or stops developing). Thanks for reading and thanks for all the kind words of encouragement and well-wished.

Image by Getty Images via Daylife

BEWARE OF SCAM AT HOME DEPOT

A “heads up” for those men who may be regular Home Depot customers. This one caught me by surprise.

Over the last month I became a victim of a clever scam while out shopping. Simply going out to get supplies has turned out to be quite traumatic. Don’t be naive enough to think it couldn’t happen to you or your friends.

Here’s how the scam works:

Two good-looking 20-21 year-old girls come over to your car as you are packing your supplies into the trunk. They both start wiping your windshield with a rag and Windex, with their breasts almost falling out of their skimpy T-shirts.

It is impossible not to look.

When you thank them and offer them a tip, they say ‘No’ and instead ask you for a ride to McDonalds.

You agree and they get into the back seat. On the way, they start undressing. Then one of them climbs over into the front seat and starts crawling all over you, while the other one steals your wallet.

I had my wallet stolen March 4th, 9th, 10th, twice on the 15th, 17th, 20th, 24th & 29th. Also April 1st & 4th, twice on the 8th, 10th, 13th, 16th & 22nd, three times this morning and very likely again tomorrow.

P.S. Wal-Mart has wallets on sale for 2.99 each. I found cheaper ones for $1.99 at K-Mart and bought them out. Also, you never will get to eat at McDonalds. I’ve already lost 11 pounds just running back and forth to Home Depot.

Be careful out there.

Last month I had a server install in Madison, WI, so I went online and booked a room for several days at a Holiday Inn Express near downtown Madison. When booking online, you have all these fields to fill in for address, credit card, etc. One such field is “Comments” where you can enter special requests that pertain to your stay or reservation. For fun, I entered “Celebrity – Treat with courtesy” and submitted my reservation. About 3 seconds later, I promptly forgot about it and wandered off to prepare for the trip.

When I arrived at the hotel, the nice gentleman behind the desk greeted me and I gave him my name. He pulled my “Priority Club” reservation and looked at it. He smiled and asked me what brought me to Madison. I told him I was there for work for the next few days and asked him where the closest restaurant was. He gave me several options and recommended some nicer options than I was willing to pay for. He also offered to call me a car (not a taxi, a “car”) if I so desired. I declined and set out on foot for a place nearby. Nice guy, I thought, but then didn’t think any more of it.

When I got back from the restaurant, I entered the lobby and nodded a greeting to him with a smile. As I get half way past the front desk, he says, “Hey… what’s this about you being a celebrity?” I had to stop and think for a second. I bust out laughing and said, “No, man! You’re not supposed to question it. You’re supposed to offer me a free upgrade to a whirlpool suite or something.” We both laughed; me because I didn’t think anyone read those comment lines anyway and I totally forgot about it. Him because he said his manager pulled my reservation before I got there and told him that she thought I was “some kind of celebrity!” Apparently, she was kind of nervous and excited about it.

Sorry to disappoint, Madison Hotel Worker Guy. It’s just me. It does beg the question, though: why would a “celebrity” of any sort 1) state that he is, in fact, a celebrity and 2) be staying in a budget rate Holiday Inn Express when there is a 4 start hotel right next door in the same parking lot?

Anyway, I have to return to Madison tomorrow for some follow-up work tomorrow. I just completed and submitted the online reservation form again. “Celebrity – Treat with courtesy” Let’s see what happens this time.