DOC PT TENS

Fleming and I had a good visit yesterday with both my hand doctor and physical therapists.

We had the usual brief but informative meeting with the doctor and his assistant.

1. The graft looks good. The doctor actually said it was the best he had seen it.
2. I only have to bandage the little area in the center where the graft didn't take and is still open/healing.
3. Any problem with the hand is from radiation not the doctor's fault. (I love this one)
4. I'm going to maintain my pain medication for now.
5. They referred me to the Pain Clinic to look further into the general pain.
6. I'll go back in three weeks, which could be a final check up.

So everything seems to have gone well. Everything except for Fleming almost losing her lunch and/or passing out when they removed the bandage from my arm giving her a first look since surgery. I joked that is was a little bash to my confidence when my arm had Fleming seeing stars and asking for water. I think she finally got adjusted. Like I've said in the past, the renovations on the arm are shockingly impressive to say the least. Truthfully, I'm used to the arm and think it less of an issue each day.

After seeing the doctor and helping Fleming cope with the experience, I visited my physical therapist who I really like and feel very confident. She is very realistic with a smile.

1. We readjusted the splints, one for sleeping or just maintaining the stretch to my fingers, the other for exercising my fingers.
2. Either can worn pretty much any time.
3. The hand splint had to be adjusted an inch around my hand to accommodate the swelling going down so much.
4. Both splints are now more comfortable.
5. I slept in one of them for the first time last night.
6. We're going to start the casting after I return from the beach.
7. I crushed a jelly donut and two white chocolate macadamia nut cookies while there.

This was my favorite visit so far, and not just because they fed me. I really felt like we accomplished the most, dealt with my concerns, and made a plan to maximize the potential of me hand. To help with pain, we are trying a TENS unit. Transcutaneous Electrical Neural Stimulation consists of two pads that stick to different locations currently above my elbow. The "shock" both distracts the brain from the hand pain as well as changes the pain. I agreed, the different pain was a welcome change. It's really hard to understand exactly how it affects me but you can appreciate that I like the results.

My next visit is Wednesday for a chest scan and a meeting with my surgical oncologists and the doctor that planned and monitored all of my radiation treatments. With everything being so crazy over the past few months, I have to be honest and say I'm nervous. We're looking forward to a nice vacation at the beach after the hopefully good day.

Let's get physical...physical

I wanna get physical....

Physical therapy. That seems to be the new buzz world. No typo there. I'm probably looking at all sorts of long-term treatments over the course of the next year. We have to break down what can be done, how we're going to do it, and when that is going to take place.

More specifically, we're going to use a series of castings (old school white castings) to slowly stretch my fingers out straight. Currently, they are curled into a half fist. Once the fingers are straight from this process similar to braces and retainers, we'll focus on the movement.

Currenty, there is decent movement in the knuckles and a little less but still movement in the other joints. The muscles have a numbers of difficult factors against them. Repeated surgeries, radiation, brachytherapy especially, scar tissue, and tightness from the graft and flap attaching to the muscles all make movement more challenging. I guess having most of the flexor muscles removed probably doesn't help anything. Regardless, after we straighten we work on movement.

Hopefully with time I'll at least have the claw motion of my straight fingers and thumb to do most things like holding or grabbing an item. That is the most guaranteed motion but a normal opening and closing isn't out of the question just a factor of luck, work, and what’s left being agreeable.

As always, I'm doing everything. We're going to do a number of treatments with acupuncture including laser acupuncture, massage, and very positive thinking and visualization of healing.

The pain is still pretty bad. Increasing the amount of aggregation to the area with stretches and braces is both great for motion and discomforting at the same time. Not to end up like Butchy Yost, I've been reducing the amount of oxycontin I'm taking. The nerve pain medication is a different story. I tried to cut back. It hurt badly. I'll wait a little longer before I do that again. We are attacking this problem with acupuncture as well.

I wasn't trying to write a long post since I have a check up Friday with the doc. Maybe I'll just check in afterwards.

Take care of yourselves and each other.

CP

PS Bret Michaels, lead singer of Poison, is starring in a new, delightful show on VH1, "Rock of Love." Bret, a mansion in LA, 25 Hooters girls, strippers, and groupies make for one of television’s greatest new reality shows. Catch it on Sundays, after church, of course. It rocks...it really, really does. (Ash agrees)

Arm check up in two weeks, CT scan on August 1, beach thereafter.

Wednesday went well. The graft is looking good enough to move away from the wet bandage to a dry one. Life is simpler and dryer. We’re really back to the point of dressing changes and graft appearance as we were last year with the first surgery. I could be out of a bandage in less than a month.

Although that idea seams great at first, I’m a little hesitant to dawn my new arm to the public. For those of you who haven’t seen the pictures, the skin is covering the wound, but there is a large void where the forearm used to be, especially close to the elbow. Because of the radiation treatments, surgeries to attach tissues had significantly lower success rates. A large portion of the flap died and was removed. Things do not look normal by any means and I might want to wear a skin toned fabric sleeve to cover the wound.

How do I feel about this? It’s a little disheartening. I’m lucky to have an arm, but it is by no means the one I had before all this began. As far as dealing with the deformity of my arm, I’m holdin in there as usual. I'm not thrilled, but life will move on and things will be fine. I might just cover the wound to make other people have an easier time with appearance, which will obviously make me more comfortable as well. This is not the worst thing that could happen by any means, and I’m happy to have the arm.

I also really started physical therapy Wednesday as well. So far I have finger joint stretches and hand motion exercises that if done correctly would only take close to twenty minutes of each hour, to be done hourly. So I guess I have a new job now… We talked about goals. I said I’d like to open and close my hand within a year. This was reasonable. It’s also a lot to swallow. I do want my hand back and look forward to seeing the progress, recognizing that it will be slow but hopefully steady. There was a massive amount of muscle and nerve removed from my arm. Currently, I’m going to meet with the therapists weekly and see where the road goes.

So we have an arm that doesn’t really look or work like it should… These things are truly minor…noticeably present and influencing in my life, but minor. I also have to adjust to some fairly significant pain left over from the surgeries, primarily nerve pain. When levels are low, there is just a tingling sensation. When levels spike, the feeling is more like crushing a light bulb in your hand and not being able to let go of the electric current. The pain can be shooting and at times, unreal to bear. This sucks. I don’t like it one bit. I'm attacking the pain from all angles. Hopefully it will go away. It most definitely has dramatically decreased since I was in the hospital. This excerpt from an email to my doctors explains the situation a bit more…

“Secondly, and ironically, is there anything else I can take or do for the nerve pain? Maybe I could try a different medication or potentially increase the 150mg dose or frequency of the Lyrica. The nerve pain is at a point where anything can spike the pain running through my hand…loud noises, sudden movements, etc. The pain is also constant and easily stimulated. For example: the corners of a balled up piece of paper feel like sharp spikes or rubbing the back of my hand across my beard stubble feels like holding your hand too close to a fire. I'm aware that this pain might subside further or even go away completely on it's own. I'm also a realistic person, and am aware that this might just be a situation that I have to deal with as a result of major surgery involving both primary nerves. Without trying to sound dramatic, I just wanted to see if there were any other options to explore.”

This is an honest Blog. I’ve tried to explain the experience as it is. Right now, it's pretty tough. Ashley and I are dealing with a lot; the physical aspects, the physicals losses, the never ending medical care at home, the long road of rehabilitation, the constant presence of real pain, and the looming schedule of chest scans. We’re handling it all amazingly well. We’ve blown out each other, set boundaries, described emotions of feeling unappreciated, and each time finished the conversation closer and more understanding of each other than before. What more can you ask for in a relationship? What more could you ever possibly want from the person who has to be dragged through this crap with you? Nothing… And in that, there is a massive positive force enough to grab hold of that pulls you from the places you don’t want to be…fear, depression, anger, and loss of faith. I hope that makes sense. Having my friends and family support me keeps my head up and drives me to stay positive. Having Ashley by my side through all this makes it both worth doing and remotely possible. Thank you, Ash. Thank you, God.


PS Yesterday, I got back in the saddle of acupunture, which has been an important element through this journey. Both my friend and acupunturist, Marc, and myself are excited about working through the healing from a different perspective. One that I'd enjoyed amazing success.

Home and Healing

I’ve not only arrived home which happened Thursday thanks to the rapid expedition of the wound vac, but I’ve also had my appointment with my doctor Friday for our first post op[eration] look at my arm. To our relief, the skin graft looks as it should, pink in color and bonded securely to my arm. Being the realist that I am, I have to recognize a small area in the center of my arm about the size of a quarter that could be (according to the doc) a problem, but if it is one, it is minor and can be addressed in due time. There are a couple of Triton Photos that should handle the remaining details.

It is great to be home once again and with fingers crossed and healing as planned, I’ll be back to normal in a relatively short time. Currently the worst drawback is the pain. My leg hurts from where they harvested the skin, but it really hurts when I stand up and blood rushes into it, and that’s a strong second of course to jumping out of bed which registers somewhere close to the that scene in the movie, Misery, with the large mallet, wooden blocks, and homeboy's ankles.

I've been given a fairly specific list of hand exercises to perform. They involve both the passive extension of my fingers and the passive curling if them into a fist. Passive bending and stretching means using the other hand to do the movement for the hand your working. Although timely and a bit painful to complete, getting the joints stretched properly is the first step to having a hand that functions as more than a paperweight.

I’ve been sleeping well; steady through the night, with a couple of naps each day. The hardest part about sleeping or relaxing on the couch is the anticipation of the pain. If only I could sleep like my lovely bride in te photo from the previous post during a slightly hectic time like having a nurse man-handle your bloody thigh.

I'll come back and finish later...narcolepsy…narcotics...i'm sleepy.

Well, I've napped and had a bite. I believe this post is complete. My next appointment is Wednesday at Duke with my surgeon and my physical therapists.

Until then...I'll leave you with the funny thought that the people at HBO forbid my wearing the pajama shorts in the picture above to treatments an account of the great enormity of crusted blood on my thigh. I thought it looked cool to have bloody PJ's...guess not.

Happy 4th of July. I have HUGE plans.

Surgery went great. The team thinks this sould be my last stay in the hospital for a while. The hospital must have caught wind of this and absolutely F'd me on a protocol technicality. One that sends me home Friday instead of today....Oh, for Pete's sake!

I'm on a wound vac and have to go home on a portable one which must be ordered through a third-party portable wound vac company. The catch, it takes 24-48 hours to get one. Mine wasn't ordered ahead of time, tomorrow is a holiday, and no matter how much complaining up the latter you do, I'm stuck. You can't even buy one for around five grand if you had the good sense to do so (just to stay out of the hospital for three days). Still, thinking outside the box, Chegroup might benefit from one. I mean, we do get hurt…speaking about physical injuries of course. Financialy, we don't don't how to get hurt...

There is a true upside...man, I'm so damn positive. Being in the hospital saves my family big time on having to get me to the hyperbaric chamber by 8am all week. I'm glad they get to sleep in, just as long as my lunch is delivered in time before my 1pm treatment. To my amazement, the kind people are volunteering to sacrifice their holiday morning. Just so I can get in as many rides as possible before Friday, several of the team came in at at 8 for a morning session. When the bandage comes off, thanks to both the wound vac and the HBO, I should go home a free man, never (well sorta never) to return. The people here truly just want to see you succeed. My sincere thanks to them all.

Long story shorter, I'm feeling good, but totally held captive in 6318. I guess I was due for something unlucky to happen to me....

PS When I finally get it posted. The picture up there is great...me micromanaging the nurse wrapping my leg while Ashley sleeps in the background. A thousand words, a thousand words

Wrap it up, I’ll take it.

The hyperbaric chamber has shown excellent results. I added a photo of my current arm to the Triton Photos. If you take a look at the current arm versus one of the earlier pictures, notice the extreme increased amount of red matter and the healing that has taken place. The pictures are a lot to handle still, so some of you might want to (begin to) take my word. The red substance includes both increased muscle and blood vessels, both of which are great things for the skin grafts to attach. The darker areas are unusuable tissue that has clumped together and "scabbed" over. To be honest, I don't know what they are exacly, but I do know they won't be there after tomorrow morning. The surgery is scheduled for Monday morning and should be the last time we try to cover up the problem.

I learned from one of my doctors that radiation can significantly affect the success of grafts and flaps. Without getting into numbers and percentages, the odds were not that great that the last surgery would be a total success. It was a bit unusual that the flap did so well so far from the blood supply, but…hey, that’s just me…not normal. Discovering that the surgery had a much higher rate for potential failure actually relieved me. I thought it was supposed to be almost bulletproof. Knowing the truth can be a good thing most of the time.

So surgery is Monday. I’m very excited to get this part over with so we can start paying attention to my wrist and hand, which currently are pretty weak and tight. In no way did I indicate I have a limp wrist. As my arm has been healing, it has created some tightness, but my doctor did say he could address some of these issues during surgery. This whole recurrence had been a major process, on so many lev eos.ppppppppppppppppppppppplllllllllllllllllllllllllllllll==========================llllllllllllllll=pooooooooooooo------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- (sorry, Clark just woke me up. I fell sleep writing on the couch…what are you gonna do?)

Clark rescued me yesterday from my home imprisonment and we cruised to Lake Gaston (Ashley ran up to Richmond for the night for Whit’s birthday). It’s the first time truly away from home for quite some time. I’m Courtney Love pail and in desperate need of some color. Maybe I’ll grab a little of the sunlight before I’m back in the hospital and home recovery while I have a chance. I’ve been out a little more slowly over the past week, and it really feels good to be out. The graft recovery period is relatively short, especially considering the recovery time from the two previous substantial surgeries. I should be out and about in no time with a pretty creepy arm. Working on that both cosmetically and functionally will take some serious time and energy, but we’ll get through that too.

Thanks for caring, keeping updated, and wishing us the best.

I love you.