Lucky Guy

So I'm home. The support system has relocated and we're pushing through this thing one day and night at a time. I say night because I feel like a baby, needing to be fed his medication every couple of hours, which includes the evenings. Dad has helped me to the bathroom at two, four, and five and or six in the morning. Staying here, Clark was up until 3am working to make sure I kept one step ahead of the pain by not getting off schedule. Today, he basically held my hand while I showered for the first time in three weeks and then was patient enough to shave off the beard I had grown with numerous sorta sharp razors. Betty has run all over town getting all the supplies I've needed. Fleming's both entertained me and helped readjust the fitting of my brace to make it Significantly more comfortable. Mom's still recovering from her round the clock support in Durham, taking care of herself at Duke over the past couple of days. Without a doubt, just recharging those batteries to get back in the game as needed.

Ashley has been the CEO/MVP of care giving, handling everything I've needed from food, to medicine, to being comfortable, to making my return home be more than everything I was looking forward to for quite some time in the hospital. She has stepped up, juggling a successful business with the successful recovery of her husband. I couldn’t have more loving and dedicated support. I love them all as much as the affection they have shown through their actions, words, and thoughtfulness.

Earlier this week Ashley made a heart-felt comment about her reaction to this experience and her admiration for me and my handling of this whole damn…I don’t know how to describe it…repeated obstacle, struggle, and crappy pain in the ass. I wanted to post her comment on the main blog not to make myself look good or strong, but rather to show how lucky I am to have such a wonderful woman in my life, in both times of joy and times of need…


Ashley said:

i have been too quiet on the blog for too long. you all have to know how courageous and brave our clyde has been. there have literally been times in the last few weeks where i have said to myself "i could not do this". i have seen clyde in more pain then people should have to endure. the pain team at duke said nerve pain is the toughest pain out there and the hardest to treat. they are actually surprised at how well clyde is handling the whole situation. i have seen him wince but never whine, correct a situation but never complain and honestly, go through the hardest thing he has ever done with humility and grace. 

my parents always told me the true character of a person is how they handle a rough situation. clyde is an example to us all. i hope none of us ever have to go through what he has but, if we do, we can look to him because he truly has amazed me with his strength. 

i've always told clyde one of the reasons i fell in love with him because he constantly intrigued me and was so interesting....he still fascinates me and boy does he keep life interesting! even in his bed at duke (in the buck of course) with needles and wires sticking out all over him he still looks so strong...its kind of bizarre. 

when clyde was a child, he used to pray before he went to bed every night that he would wake up with Wolverine's (his favorite comic book hero) strength and powers. now that i think about it, they are similiar; in being strong and courageous (of course), healing faster than normal, functioning while heavily sedated (that one cracks me up)...and they both are a little on the hairy side. 

i am not just proud to be clyde's wife but proud to know him. we are all so lucky to have him in our lives and constantly be amazed by him. my mom laughs because she says i went to wake forest to learn, but instead met clyde and he became my teacher. i am constantly learning from him. this lesson is about how hard life can be and how to handle it. i can't wait for clyde to come home..entourage just isn't as fun to watch without him.

love,
ashley

Hit the Road, Jack!

Popped the cork this morning, so it looks like I'm most likely going home this afternoon. The only other concern was physically getting around. Being in the bed for a week sounds cool, but it really isn't. Yesterday on the way to hand therapy, the guy transporting me in the wheelchair and I came to the conclusion that 2 to 3 days is about the maximum time before it starts to not be awesome. We also agreed you had to have a 40+ inch widescreen TV, big comfortable bed, someone fun to share it with, necessary amenities and entertainment…basically everything I did not have except for professional sponge bathers, maids, and a person at the other end of a button who was there to try to make you’re life easier, i.e. nurse.

That did not happen yesterday morning when one of “those people” misread my medication and double dosed me on pain meds. Plus side: no pain, state of euphoria, etc. Negative side: totally screwed up a perfectly good morning, couldn’t have other medications, numerous annoying people swarming me, anger, a little feeling of questioning the system, blood/pulse monitor clipped to my ear for 2 hours. Todd, give me a call. We’ll settle this one. Everything worked out fine with that. I think it will be a much larger issue for Duke than CP. It didn’t even hold a candle to my waking up from anesthesia, paralyzed with a breathing tube down my throat. That was awesome…and only one of several other horror stories I have under my belt after this adventure.

So, they've rigged me up with the device you see in the picture. Let me try to remember the technical names for cutting edge hand therapy components...bra hooks, fishing line, Velcro straps, and rubber bands. The advances in science are totally mind-blowing sometimes. This brace will keep my fingers from overextending and injuring the transferred tendons, and the hook, line, stretcher part will provide resistance on my fingers helping to improve both range of motion and strength. The whole rig is much lighter, creepier, and comfortable…great combination.

It has been a long two weeks. In whole, I received unbelievable treatment, care, and attention at Duke. All their people are amazing…well, almost all. Regardless, it’s a special place. I’m ready to go home and start seeing everyone. I might be a couch slug, who’s not the most fun person in the world to be around, but if you want to relax and catch up, I’ll probably be pretty easy to find for the next month or two…or not.

Hollar! I’m back baby, I’m BACK.

PS Don’t slap my back when you hug me.

(Triton Photo Updates)

Tortoise on bed rest.

I've been out of the ICU, in a "Step Down" room for several days now. Today, I moved from “Step Down” to a regular room. Without getting too graphic, they’ve removed a dozen or so sensors and tubes off or out of me of me and are starting to think I can start thinking about leaving, granted, I’m still on bed rest.

The part of the process I’m going through now is slowly transitioning from a narc’ed out, buck naked, state of limbo hospital patient to one who has a robe on, a schedule, a job, real hair, real fingernails, and a pain management plan that involves getting prescriptions from Kerr Drug instead of Nino Brown. Although it takes a little trial and error which is a bit painful at times, I really do feel like I’m getting back on my feet (metaphorically of course) and closer to leaving and tackling this recovery best more on my own. It really has taken me a week for the initial mental and psychological recovery and rehabilitation to take place.

I’ve started some small, passive therapy movements in my fingers, primarily to keep the finger joints from locking up. Real hand and finger therapy won’t begin, until the flap/graft has significantly healed after a few months.

What the Hell Did They Do to You Clarifications:

Flap...the muscle, fat, tissue, and blood vessels removed from my back, leaving a 16 inch scar according too Clark’s estimations. The flap was attached to my forearm including connecting a major vein and artery (that had been removed during the first surgery.) This tissue is purley cosmetic. The muscle won't be used for movement.

Remaining forearm muscles...There were enough muscles there, being that the remaining few were small or partial. Strength and movement show be possible and possible to improve.

Graft…patch of skin that looks like light colored thick netting (after running a piece through something resembling a pasta maker) to cover the flap and other open areas. The graft was stapled into place. There was a lot taken and much used. This area is one of the messiest, more painful part of the process.

Tendon transfer…moving some lesser used tendons to different areas where tendons had been removed during the first surgery to return fairly normal movement, aside from flashing gang signs, in the fingers and hand.

J P…a plastic bulb attached to a tube sticking out of my back that sucks juice out of my back. It’s totally the opposite process of marinating a steak.


So I’m here, in bed, feeling pretty good, taking a ton of naps and a few visitors, trying to get home slow and steady. My mind is focused on my recovery and not my reoccurrence. That part is just a pile of medical waste somewhere (except for the samples they collected for several ongoing and future soft tissue tumor research projects).

Surgery flashbacks and photos still to come.

PS Tomorrow, I'll turn in the bulky, heavy splint for a lighter, more streamlined model. This will be intrumental in my mobility limitations becoming a thing of the past.

Hospital Delirium

Last night the doctor on call for my floor told me that I might have “Hospital Delirium.”

My symptoms:
1. Pensive
2. Cranky
3. Unable to relax
4. Exhausted
5. Insomnia
6. High heart rate

And, of course, things that can cause or accelerate the condition include:
1. Surgery
2. Large quantities of pain meds
3. Pain
4. Lack of sleep
5. Extended hospitization

Oh yeah, those were my symptoms too. Considering the week I’ve had seen and endured, both physically and mentally, he thought I was holding it together surprisingly well. I agreed. My family might not. I was red-lining yesterday.

We have some of the craziest pictures and stories the Chronicles have ever seen. Today is my first coherent day since surgery, Monday. I’ll start getting them out ASAP. Let’s stick to “Cliff’s Notes” tonight.

Let’s talk about the good stuff. I have 2 books, at least one movie, and a mini-series worth of material that could be based precisely on this week, with a couple of coffee table books that would be titled something like “Grossest, Most Interesting Pictures You Can Take Of Yourself,” and “Squeeze Loved Ones Who’ve Been Though Cancer As Tight as You Can, They’ve Been Through Hell.” Of course the second one would have to have a section solely dedicated to Clark’s creative works that were inspired by this whole experience, primarily poems i assume.

THE SURGERIES WENT GREAT!! The first surgery was the removal of the tumor with wide margins. It all came out and the margins were 2 to 3 times larger than the last removal surgery. Our goal of being aggressive was accomplished. The second “rebuild and repair” which lasted close to 8 hours was also very successful or at least will provide the most success possible down the road after rigorous PT. Muscles were moved from my back, tendons were transferred, nerves were spliced, a LARGE amount of skin was grafted (about 4 times as much as last time recovering over half of the area between my elbow and wrist). I can already wiggle the fingers that were useless when the nerve was removed Monday. So far the initial, toughest part of recovery has gone well. Everything is taking and the varyous sites and recovery look great (great according to doctors). That last sentence should probably read more like: So far everyone is recovering well from taking a lookn at the various sites. Both sentenses are thr truth.

We are all super positive, super happy to get these massive surgeries, large margins, and initial recoveries behind us. And I want to thank my family (Harris and Vermillion) for being there for me every single day through the past two weeks. Everyone excelled in his or her own special part. They’ve helped me through the night, through the fear, through the pain, and have seen and done things in the process that no one should ever have to experience, referring primarily to the sponge bathes I’ve received (Nate, you still owe me one) JK. All joking aside, the teamwork over past two weeks is one of the many reasons that the family gets so emotional whenever they attempt to verbalize their love for this family, whether it be a room of 300 or a table of seven.

I’ll get back to everyone soon. Love to you all.

CP

PS Mom has demanded, rightfully so, that I make an official comment about playing "Carwash" on my computer's stereo while she was she was busy sponge bathing her baby boy (all 240 lbs). She also wants me to make note that I thought Shrek was in my ICU room for at least one entire day after surgery. It still is unknown whether he was recovering himself or just volunteering to cheer peple up. (Probably just doing communty service imposed by a Judge for indecent exposure)

Pulling Tubes

Hey everyone,

The pain has been manageable and I’m doing well, enjoying the time alone to rest (and by rest I mean sleep), watching some sci-fi DVD’s, and learning a little Spanish. Those are listed in order of what I’m doing most to what I’m doing least. I can say, “The boy is under the table,” as well as quite a number of other useless phrases, unless you’re a babysitter or a child kidnapper.

It looks like the seed strands come out around 9am and surgery is scheduled for 10:30 tomorrow morning. They are probably taking the seeds out then immediately wheeling me to pre-op, The seeds are carted off in this heavy lead bucket on wheels, affectionetky name, "The Pig." I asked, "Why The Pig?" but still haven't received a good or funny enough answer.

The doctors will pull the catheter tubes from my arm before reconstruction begins in the OR. The surgery is going to be fairly long, in the six hour range. Transferring hair to your arm from your back is no simple procedure…

After surgery, I’ll be in the ICU most likely overnight. There will be limited visitation and there is a decent chance that they’ll keep me asleep through the night to make sure I’m absolutely still, increasing the success with the skin flap transfer. Personally, if I have to sit absolutely still for a whole day, I want to sleep through that monotony or at least be in a deer stand, preferably a Gunslinger climber with a headrest and great napping potential. Special shout out to all the fellas in Thee Deer Club. Some of you still owe me money for this year's dues. You know who you are...

That being said, Tuesday isn’t a great day to visit and Wednesday might be questionable if I’m just coming off anesthesia that morning. Regardless, I’ll be groggy and very sore for a couple of days after the surgery. We’ll know a lot more after the surgery when we can talk to the doctors.

Let's finish what we've started, tomorrow.


CP

Phase II Initiated

Yes, the yellow bracelet means I'm radioactive. Note red radiation symbols.

The "seeds" have been planted. Technically, I’m “loaded.” Good choice of words. With my movies, games, Spanish lessons, internet, buffet, and inability to be visited, I’m taking a four day vacation from everything and catching up on sleep, bathing, and anything else I deem worthy.

Mike and Reid, Have a wonderful wedding weekend! I love you both like family (which means something from a guy who actually loves his family). I might have missed this special time in your relationship, but I’ll be there in full force, nelson, or monty for all the great times ahead of us all. Congrats on finding and having each other.

Hello everyone else.

PS

Pain medication to help get through post surgery pain….$10

Multiple brands of laxatives to relieve constipation side effects of pain medication…..$20

Radioavtive brachytherapy seeds for your arm to fight cancer...$1,500

Having ALL the laxatives kick-in at once when your on the OR table in front of a room full of doctors, nurses, and technicians…..PRICELESS


Nerd facts:
1. There are 240 seeds in my arm
2. They are made up from Iridium (isotope 192)
3. Duke ships them in from Springfield, VA
4. There are ten strands of seeds, 24 seeds per strand.
5. They remain in my arm for 90 hours
6. When they remove the seeds, I’m radiation free.

Blog where you 'posed to...

Posted this after lunch, but I did it on Trton Photos by accident. I guess I'm a little out of it....

Brachytherapy starts tomorrow early afternoon. The margins were widely negative, even more so than last time. That was the goal, and everyone is happy.. Scheduling has fortunately lined up for radiation to occur with as little interruption as possible between the surgeries, making my stay as short as possible. For those wanting to pay a visit, don't bother coming until Wednesday, after I've been released from my lead-lined isolation chamber.

I should be home by the end of May or beginning of June. We’ll have a better idea at that point whether or not an intense Rosetta Stone Spanish study will produce any results…(I think I saw a warning label on one of the bottles that read "Don't bother trying to learn ANYTHING" directly under "Don't operate heavy machinery.")

So far this has been a different experience. Definitely the most painful, but also the most restful since I've been knocked the f'out on a regular basis from my regime of pain medication, muscle relaxers, anti-anxiety meds. Honestly, the pain has just recently become tolerable with the help of manipulating the dose and frequency of these drugs. The first day or two were pretty intense. I couldn't imagine what it would be like back in the day....except maybe that one time i misjumped ye old bonfire. That was old school pain.

The lead room might block x-ray vision and cell and wireless signals, but if I can, I'll update. It should go down like I’ve explained. The radioactive seeds hang out in my arm for 90 hours then I'm through. At that point, it's just one more surgery and a recovery...

We'll it's been something crazy, like 45 minutes, since I've had anything....NURSE!!!!!

much love, CP

Dude, where's my arm?

This is gonna be short. I'm so wacked out on pain meds that I have to close one eye and wear my mom's glasses to see the screen. That took 5 minutes to write that.

s urgery weny well, it took 5 hours to take out most of the muscles in my forearm, the radial artery and the median nerve ///9which is about the size of a pencil. I'm doing OK, in a litte pain, but in good company with the fam and a few visitors already.

I'll get more down tomorrow when I can see and my brain is functioning at a level higher than an end table.

Everything is planned to go down as describedd earkier in prevous posts.

I put spme pics under "triton photos." you'll see the large black sponge of the wound vac and a rather large void in my arm. heads up....

Thanks for all you love, prayers, and support.

CP

time for mac and chees! over and out

One less thing to worry about.

Both doctors I was considering for the surgery met this morning in St. Louis. What an absolutely amazing circumstance to take place?! Even more unbelievable is that they both called me after lunch within 15 minutes of each other to discuss my case.

After reviewing the results from the most recent MRI, they both believe the more aggressive surgery is mandatory. The tumor appears to be touching the radial nerve and too close to the artery so both must come out as well as a good amount of muscle and be grafted with similar tissues from other parts in my body. A large flap from my back will be used to fill and cover the wound.

I'm going to do the brachytherapy. It adds a boost of treatments just in case something was missed with the resection. Apparenty, while I'm doing that, it is not a very good time to visit at all. Like, don't come. They won't let you near me. I'm radioactive...

The tumor has close to doubled in size since I first noticed it less than a month ago. The doctor in NY thinks it's wise for me to go with the doctor at Duke, since he can operate much quicker and he has a better knowledge of my anatomy and surgical history. Both hospitals agree that the other can handle the surgery in all aspects with equal ability and result. Honestly, at this level of medical treatments, we really are comparing apples to apples. Really, really, good apples...probably Red Delicious or Granny Smith from the nicest tree in the orchard at the best farm in the world. Hell, at least I'll be able to hold one of the things with my left hand when this is over...

Surgery is Monday in Durham. Hopefully the beginning to the end of surgeries for me. Granted, this one will have about half a dozen or more different parts to it and at least two days in the OR. I’ll come home early June.

Ashley's birthday is today. She's 30. We're celebrating.

Tides

After an entire day at Duke and now waiting to hear from the doctors after they meet, the decision of where to have the surgery is entirely in the air.

The decision of what is more clear....aggressive removal of the old tumor bed (the big surgery) and all it involves. The brachytherapy is a little bit undecided but most likely going to happen. Sounds like it includes four days of solitary confinement in a lead-lined room…sweet!

I should be getting a call tomorrow after the two surgeons meet in St. Louis.

Frankenclyde

...back to reality.

I've been nonstop for the past two days. Here are a couple of exerts from emails to doctors and close friends and family to fill everyone in...

Email to doctor:

"The reoccurring tumor appears to be at least 2 cm in size now and Dr M feels I should be more aggressive with the surgery, with a wide re-excision of the entire operative field. Dr. A thought if the median nerve were close to the tumor or touching it, it should be a mandatory treatment, but didn't rule it out as a very reasonable option regardless. This surgery will result most likely in major loss of hand function, strength, and sensation of touch.

This would involve removing the majority of my forearm and the skin, replacing the muscles with some from the lat area of my back and nerves from my calf. There could be an artery graft needed as well. A major surgery that I had discussed with you and Dr. L if the median nerve were involved initially. Most likely the skin graft would be taken from my back, but the leg could still be an option."


To family/friend:

"i'm not that down in the dumps about this really, just trying to make the decision that's best for me

who can operate quicker?
who's a better surgeon to remove the area?
who can reconstruct my arm better?

blah blah blah....

i'm meeting again with my doctor in durham and all the others doing the preop appointments. we'll figure out a decision over the weekend. i'm scheduled for surgery on monday at duke, which is a bit of a crunch to make the call. i haven't heard when this specialist is available to operate in NY

it looks like the ny and nc surgeons are going to be able to talk at a tumor conference in saint louis this weekend, which is pretty amazing.

y'all don't worry about me"

To everyone reading the blog:

It seems like alot to swallow but it's really down to the three questions I asked earlier. I'm doing fine, planning to be aggressive and feel good about my outlook. I'll know more tomorrow and even more by the beginning of next week.

CP