Saturday in Santa Cruz

Lezlee, Gabor, Joel, Betty, Gus, me, Nicole (My parents were there too)

I spent Saturday morning swimming around the Santa Cruz Pier with friends and together we raised more than $3K for the Half Moon Bay "No Strings Attached Breakfast" Program
(The event raised $40K with 50(?) swimmers).

The water was not warm, but the air temp probably made the spectators colder than I felt in the water.

Plenty of great ducks (I'll link/post picks of them as I find them).
Yes, I got to pull one! (Joels duck was not satisfied with its Thanksgiving swim in HMB)

Chris didn't get to swim this year, but he still drove over and paddled his outrigger canoe next to Nicole and me.

Trying to stay warm before the start.  Where's Nicole?  Check out Gabors cool Super Duck.

I'm still swimming with (very long) fins - I may have to from now on - but so happy to be out in the salt water with the gang.

Thanks Mom and Dad for making the trip and for hauling our towels/clothes from the start to the finish.

Note:  Joel kicked the 1 mile despite having heart surgery less than two weeks ago.  What a stud!  (Now you know one of the reasons I don't whine very often.)

Going solo

Hope everyone had a good Thanksgiving.

I haven't posted in awhile.
Guess I am starting to feel like my life is becoming as unremarkable as it was pre-Maui.

I can happily report that I survived my first week of living solo. 
Sure I considered using a hammer to open a pasta sauce jar and I am glad that there are no cameras to see how I get through the day, but I now have proof it's possible. 

I even upped the degree of difficulty by riding my cruiser to the store and buying 3 bags of groceries today...after a morning swim in the Pacific with the gang.

Prosthetic arms in the NY Times

A friend sent me the link to this in todays paper
http://www.nytimes.com/2012/11/27/us/prosthetic-arms-a-complex-test-for-amputees.html?smid=pl-share

Swimming for a cause

I've never needed much of a reason to go for a swim, but the Will Swim For Food offered up plenty of them:

• A cold water swim with friends,
• Around the Santa Cruz Pier,
• With bagpipers to lead us out,

 

•  and swimmers towing hand-painted ducks

 And the proceeds go to a food bank of my choice.


I am sooo ready.  Where do I sign up?

So if you would buy me a beer in a bar, please consider donating $10 so that we can help provide a hot meal to some hungry Coastsiders. 

Thanks,

John

It's not cold. It's home.

Today I finally got in the ocean

No, not the +60 (or 70) degree salt water that I grew up with, but the 50-something degree stuff that I have learned to love over the past few years and have been denied the last 14 months.

The wind had been blowing all night, but the sky was clear (something to celebrate here in HMB) and Surfers Beach was glassy AND EMPTY.

Me, Joel, Lezlee

 

I decided against the wetsuit, but had to throw on some cruiser fins so that I'd have a chance to make it to the Miramar and back.

They gave me a head start (and I needed it)

I knew that it wouldn't be easy getting into 54 degree water and I wasn't disappointed.
What did surprise me was how good it felt 10min into the swim.

My wing-men: Gabor and Joel

I really want to thank Gabor, Joel and Lezlee for sharing such a magical morning with me.

No green thumb required

The weeds were getting a bit too tall (even for me), so I decided to test my mowing skills.

I was even able to remove and empty the bag when I was done.

My new normal

So what have I been doing for the last month?

That's a bit hard to explain because my body and mind have not been doing the same things.
This is probably not that strange for some people, but I have put a lot of energy into being "present" in my life (especially in the last few years) and now when I am not...it sucks.

That doesn't mean I've been sitting in a dark room staring at a wall.

Sure, this has been a tough month; A ruptured tendon has really lowered the bar on what can be called a "successful surgery", but

My middle finger is definitely straighter than it was.I will never be able to bend the tip and, unless I have work done on my extensor tendons (the ones that straighten your fingers), the finger will never open/close.
At least my hand is back to what it was pre-franken thumb surgery

I spent a couple of days in Yosemite with my parents (no hantha virus outbreaks) and even got to hike the Panorama Trail.

And I went down to SoCal and watched the CAF San Diego Triathlon Challenge with my sister, saw my nephews play (soccer, robotics) and saw my niece (who just keeps getting smarter and smarter)

I'm still watching some great Stanford Volleyball (and enjoying seeing Kaitlin and her parents too)

And I have been able to put in a lot of hours on a presentation for the recycled water treatment plant project (who would have guessed that I'd finally love my laptops touchpad?).
But I still have not been myself. 
I know it's probably more normal than abnormal to feel this way after so much has happened.
I've had some dark moments that have lasted a day or two, but I look at it like the weather - It will pass.
This latest funk has lingered and I think it's not just because so much has been taken from me, but more from the cycle of surgery/recovery/PT which has really ground me down. 

The good news is that my doc told me that I can hold off on more procedures for as long as I need. 
And I definitely need some time.

For now, I'm looking forward to seeing what I can do with what I've got (like I was doing in the beginning).


And today Joel has set me a goal - the "Will Swim For Food" event Dec 15th in Santa Cruz.   
Stay tuned.

The full treatment

Sorry for the Debbie Downer post on Saturday, but it had been a(n extra) tough couple of weeks.
What I didn't share was that on Friday night I reached for something and felt a sharp pain in my hand.
The pain I felt was one of the two tendons that had been freed up breaking.
Along with a string of sunny days on the coast, this week also brought me the good news that the 2nd (and more important) tendon was still working so there is still some hope that the surgery was not a bust.

Now for the lighter side:
There are plenty of things that I still haven't fully figured out how to do on my own again, but dealing with my finger and toenails has been high on the list.  I have kept my nails ultra short since my high school water polo days (yeah, that long ago) and permanently losing 7 fingernails has not made this job easier. 

When I was with my sister she'd grab a pair of clippers before my nails were longer than hers and my parents have each clipped the remaining nails once, but only after some pleading.

Enter Galaxy Nails in Half Moon Bay.

I'd never had a pedicure or manicure and had rejected the option every time my mom suggested it, but when the red-tailed hawks started looking at my toenails with envy, I caved.

Walking into the shop was more than a little intimidating, but my mom pointed at a chair and the next thing I know my feet are in a bowl of hot water...with flowers.

The place was probably a lot quieter than normal when I first sat down, but then one of the ladies got up the courage to ask me about my arm and hand then everyone in the shop had something to to say.

Brenda did a great job.

She wouldn't let me just have my nails cut; she had to file them, fix my cuticle and do a bunch of other things that I've never done for myself.

I'm sure my feet have never looked... or smelled better.

The oven mitt, the Hand-v3.0 and a new arm

The Oven Mitt

Another surgery...
This one was to try to identify why my middle finger was a frozen hook and maybe even start to fix it.

I felt ok in the recovery room (thanks to a nerve block), but 10min from home the pain started.
I popped 2 percocets, curled up in bed and started my lamaze breathing.
30 minutes later and the crest of this wave of pain was nowhere in sight.
Not good.
I had my dad give me an oxycontin (The most drug I've had since Maui) and we started back to Stanford.
I found Dr Chang and he cut open the fresh cast and gave me 2 or 3 injections in the hand.
The injections sucked (sorry for cursing Dr Chang), but a few minutes later I was finally breathing normally.

The first night was packed with percocet, but by the end of day two I was feeling much better.
Now I just had to deal with the oven mitt.
Most people would struggle if they had to give up a hand for 8 days, but few can imagine having no hands.
Well, It SUCKS!!!
You lose your independence and your caregivers have to do everything, but chew your food for you.

Tuesday was the unveiling of my hand

The Hand-v3.0 (with pin)

Dr Chang was like a kid with a new toy except this was my hand and some of the contortions really hurt.
Then Carolyn (PT)  repeated the demo even while I was deciding if I was going to throw up or just pass out.

We left the clinic with just enough time to make it to SF where I got to try on

My new arm

The fitting was a strange experience.
My immediate reaction when he brought in the arm and started to hook up the harness was - "I am disabled"
I don't think I've ever felt this (or at least this strongly) even while struggling in San Diego.
Was it the shiny metal hook and cables?
The odd shade of pink plastic?
The weight?
The tightness of the harness?
I don't know, but the feeling stayed with me for the rest of the day.
I wouldn't say I'm at peace with being disfigured or being limited to 2 1/2 fingers, but I have always known (minus a few panic attacks during the hip-to-thumb process) that I'd be ok. 
Would I have felt the same if someone had strapped this on me in Sept or Oct of 2011?
I don't know.

The weekend before surgery

I go in tomorrow for another procedure on my hand.

It has been on my mind since it was scheduled last month not just because they will be cutting into my hand (again), but because it means I will have to give up every bit of independence that I have struggled to recover..

I will not be able to workout
I will not be able to drive
I will not be able to type
I will not be able to shower by myself
I will not be able to dress myself
I will not be able hold a glass
I will not be able to feed myself
I will not be able to use  the bathroom by myself
I will not be able to...

What would you do if someone told you that you'd lose the ability to do any of these for
A month?
Three weeks?
Two weeks?
A single day?

I doubt I could even imagine it year ago, but I've already gone through the loss and recovery cycle a few times in the last 12 months so I decided to take advantage of my first two weeks without restrictions since April to try to do all the things I used to consider normal and also

- By a car (a Honda Fit) with big knobs and a tiny steering wheel.
- Officially restart my membership at the club (College of San Mateo) and
- Start working out again (stationary bike and pool swimming).

And most importantly set a goal that I could achieve in such a small window of time.
Luckily I did not have to look very hard because the Board Short Mile was conveniently set for Sept 15th.

Sure there were a few obstacles -
I had not been able to work out in months, had put on a bunch of weight, had not been in the pool since February or the ocean in over a year, but that just meant I had to keep my plan quiet in case I had to cut the swim short.

Luckily yesterdays conditions were perfect with +70 degree water, no wind or surf and a hot cloudless day.
Even with all that going for me it felt a lot more like a 5 mi swim than a 1 mi swim and I had to tune out that my escorts were struggling to go slow enough for me.

Thanks Joel, Mike and Jane, Ken and Kathleen and everyone that showed up to swim and help raise money for CAF.

with Joel

with Mike

Kathleen and my uncle Ken

With the ladies waiting for our board shorts

the ladies rockin' the shorts

I'd also like to congratulate George and Tom for putting together a great event; I will wear my board shorts with fond memories.

Who says that no one likes a show off?

I stopped by Chris' house while driving back from SoCal for a quick visit and was glad to let 3 yr old Kaitlin show me all the new toys in her room. 

That's when she asked me if I'd read her a story.
Before I could answer she added:

"I can turn the pages.  I have LOTS of fingers!!!"

AND TO RUB IT IN

A year gone by

It was a year ago today, I:
     1.) swam the Maui Channel solo alongside my good friend Mike.
     2.) had my arm taken from me.

 I'd like to say that I have been focusing on number 1, but it is pretty hard to ignore number 2 for very long.

I have been thinking about all of the people that worked so hard to save my life,  to make me as comfortable as possible, started to teach me how to use what was left, and who showed me that I was loved.

At the risk of missing someone:

Thanks to my crew:
Captain Killer and his deckhand Pablo
Support crew: Nell, Jane, Kai, Laurel, Scot and (my in the water support) Mike.

 Capt Killer
(For keeping me safe and on course for as long as you could).

Mike and Jane

Laurel 

 Kai

Nell

(For being at my side on the beach, chasing the ambulance and everything else)

(I cant find pics of the rest, but hope to add them later)

Grant and his crew.

Grant 

(Especially Grant for being more stubborn than me... on that day).

The guy who held me onto Grants sled (This must have been a cruddy job).
Those enlisted to carry me out to the parking lot and wait for the ambulance.
The EMT (I know that both of us wished she could have given me morphine more quickly).

Dr Galpin and the other surgeons, nurses, anesthesiologist and other medical staff for working so hard (and long) to save my life.

To all of the nurses and nurse assistants at Maui Memorial that made my the first two weeks a little less painful (and not just with a handful of opiates).

I have to single out a few of the superstars:

 "Jersey"
(Thanks for keeping me sane)

Karen
(Still my favorite nurse of all-time, but don't tell Stanford)

My "shower ninja" Edwina
(I can't believe I don't have a photo of her in her yellow suit).

Sarah
(I'm still working on my balance)

Thanks to all of my friends and family that made the trek to Maui only to spend each day in a hospital room.

Billy

(Who can transition so well from great friend to Dr Casey and back)

 

BL  

(You always seem to be able to calm me down or at least help me laugh at myself)

 Gabor and Joel

(The two of you brightened my room, brought me all the love from HMB and from everyone at CSM,)

Nicole

(She came as a favor then returned as a friend)

 

 Mike

(I wish I had met you before, but glad to know you now)

 

Chris (Who has always come to my aid)

Scot and Matt (For sticking by me for over 27 years)

My mom (Who held it together and is still holding it together)

(On the left is Marilyn who came to my moms aid and supplied my room with the tastiest baked goods)

My sister Jen
(For becoming my wound care nurse, advocate, assistant, therapist...
I'm looking forward to going back to being just your brother)

I also want to thank everyone that visited, sent cards and gifts, called, sent emails and all those that took a few minutes to think about me and to send some positive energy my way.

And this was just in the 1st two weeks!!!

 

The list gets too long for a blog post, but I want to thank you all.

I needed all of you this last year and continue to need you.

Sport doesn't care

Not much to report, but I am excited to see some of the Paralympics.

Check out this video from Samsung
https://www.youtube.com/watch?v=y5whWXxGHUA&feature=plcp

The flip pool entry is amazing, but I loved the coaches:
"You look like a poodle, not a rottweiler".
"You strong.  You fast.  You beautiful.."

Oh DMV...

How could I have thought that the DMV would have a problem renewing my drivers license? 

After about an hour of waiting, the man at the counter barely paused before asking me -
"Which finger CAN I use?" (in place of a thumb print)

Then I was sent me to another line where I waited with three smiling teenagers (and their moms) to get our pictures taken.  Not sure who was happier.

Official license will be in the mail in the next couple of weeks.

The next step is to pick a car.
Although I'm getting pretty good at starting a normal car, I think I want one with a push button start. 
Chris sent me this list of affordable cars (no ferraris for me) with keyless systems:

ford fiesta

ford focus

kia rio

mazda3

nissan versa hatch

nissan sentra

nissan altima

toyota camry

toyota prius

hyundai veloster

hyundai elantra

Any suggestions?

Busy week

Normally I'd say that a week begins on Monday, but I've been busy since Friday.

It started with 3 days at the Pacific Masters Long Course (50m) Championships.
I didn't swim (due to having the line in my chest) but the meet was held at my club (San Mateo Marlins/Masters) so I timed...Actually I could only do half of the job so I dragged my parents up to help and spent the time chatting with friends.  The meet was great, but we were at the pool for almost 12hrs each day.

On Monday I had my neuroma (and a second one that I didn't know about) buried.  The doc was happy with the surgery, but she had me drugged up (neurotin, a nerve block and a pain pump installed) to the point that even after crashing for 4 hours I was loopy the entire night.

Tuesday I met with my hand surgeon and set a date for some work on my middle finger.

Wednesday I reclaimed some chest space by having my iv line removed.

And today I ditched the pain pump...

and lots of chest hair.

Progress?

I found out that I can stop taking iv antibiotics at yesterdays appointment. 
[Hooray!!!]

Then she told me I need to be on oral antibiotics for 4 more weeks...
[Boo!!!]

And that I need to keep flushing the tunnel catheter daily until it is removed
(Another surgical procedure that will most likely require a pre-op appointment too).
[Ugh!]

I am looking forward to having my neuroma (the nerve mass in my right arm) moved on Monday...
even if it's another surgery and they will put in a portable pain pump (continuously add drug for 2-3 days).

Oh well, at least I'm moving forward.

Back in the saddle

I have not posted in awhile, but I want to let everyone know that I am doing ok.

Some highlights:
I've ditched my splint and have not had my finger wrapped for several days.
(I still have the tunnel catheter and am getting my nightly dose of IV antibiotic).

I also went on a short ride (down the block and back) on one of the cruisers last week.
Riding is fine, but U-Turns are a lot scarier.
 
AND I drove my dads car!!!

The short drive with both of my parents reminding me to signal before turns made me feel like I was 15 again.  Now I'm reviewing the DMV manual to make sure I can make it through any testing they will require for my renewal.

I am also trying to figure out how I'm going to start the car.
(The long-term solution is to get a key less ignition vehicle, but not sure I'm going to buy something just yet).

The OLYMPICS vs the olympics

I have watched the Olympics for years, but now I'm rooting for these guys too.
https://vimeo.com/45968190

This could be a problem

Renewing my drivers license might be more challenging than I thought.

Can you spot why?

See below for the answer

I think that this might blow their minds.

Maybe he's onto something

“The cure for everything is salt water - sweat, tears or the sea.”  

 Isak Dinesen.

Hmmm...

 

The Sea

I haven't been able to be in the water for the last 3 months due to open wounds.

Tears

I've shed my share of these, but never found them to be a satisfactory cure.

Sweat

I have been waiting to donate some of this for a long time, but until this week I have been told not to work out because an elevating my blood pressure could overwhelm the tissue making up my temporary thumb. 

Yesterday I made it up to the club and sat on a bike for a full hour.

I was not surprised at how good it felt to sweat, but was glad that I could pull it off without any pain in my hip.

Hopefully I will get to start doing this (and more) on a regular basis.

1st day back at the gym

   

Now what?

I haven't posted anything on the blog recently.
Instead I've been plodding through my doctors appointments and nightly iv antibiotic infusions and trying not to stare at my hand so much.

I guess I was hoping that if I didn't write about it that maybe my thumb would be ok.

The plan worked...
until this morning when I found that the gauze dressing had turned red in the night.

I'm not positive that this is the end of my hip/thumb, but it sure doesn't look good.

To end this post on some good news -
My new prosthetist is going to come to my house next week for our first meeting. 

Strike 2

Last night they removed the metal plate holding the piece of my hip-bone that is standing in for my thumb and shaved down enough of the bone to close it back up.

The franken-thumb is a bit smaller, but the doc says he's still hopeful that the bone will continue to fuse with my hand.

I now have to keep my eye on it (check) and if there is any sign of infection the bone will be removed.

I'd cross my fingers if I could, but am relieved to know that my native hand is not at risk of getting smaller.

UPDATE:

Here's a picture of the plate and screws that were in my hand.

 

I had no idea they were this long.  

Now I'm curious as to how they removed them.

Who am I kidding?

I know I posted that I dodged my Monday surgery, but...
my hand couldn't pass up the chance to have another surgery.

Yep, the franken-thumb decided to act up this morning so I'm back to Stanford tomorrow.
The plan is to take out the plate, wash out the trash that's taken up residence & then put in some clean wire.

Hopefully it will be out-patient, but my last out-patient surgery had me in there for a full week.

Non-hand related:
I had cable tv installed today (I've managed without it for about 10 yrs) and have been enjoying the Olympic trials coverage.  Swimming starts tomorrow.

The weekend just got better

I received a text telling me that the surgery on Monday (to swap the plate for wire) has been cancelled. 
It doesn't mean that it will not have to be done, but at least I made it another week.

This might hurt a bit

This morning I went into the pain clinic for the neuroma that has grown in my right arm. 
Most of you will not know what a neuroma is (I certainly didn't), but it is a nerve that has gone rogue.
My neuroma is about the size of a bean and acts like a button labelled "press here for pain".

Typical treatment is to inject a variety of substances in and/or around the nerve mass to numb it.
The biggest downside is that even if the injections work, they only last a few weeks to several months.
Knowing this, I had hoped to have it surgically removed (especially after reading that the location and size of my neuroma should increase the success rate of surgical removal without it re-growing).

Unfortunately when you walk into a pain clinic you have to follow their protocol so they did an injection guided by ultrasound.

As the doctor ran the probe down my ulnar nerve it turned from a tube to a bowling ball.
"Well, that's not very subtle" he says (duh!).

So then he starts to inject into the neuroma and I am right back to Sept 3rd - laying in the back of a Maui ambulance quietly begging for morphine.  I have never claimed to be tough, but these two instances were the most pain I have ever experienced.  When he was done the pain at the neuroma was almost completely gone, but I WILL NEVER DO THAT AGAIN.

On the upside, it's taken my mind off the fact that they may remove the plate holding the hip-bone that's connected to my hand on Monday (I'll find out by Friday). 

Going native

My front lawn was once green and healthy.
I used to pull the occasional weed, monitored the sprinkler timers and (sometimes) mowed it.
I had a gardener that would feed and aerate it and pitch in when I slacked on my mowing duties.
Then my gardener moved away and my lawn mourned.
Then I moved to SoCal, the gophers moved in and my lawns condition became terminal.

When I came back home I decided that I was going to dig it all out and replace it with a yard that could survive a non-gardener owner, but then I saw something shiny...

Luckily for me (and my neighbors), Nicole made saving my front yard her mission....
and when Nicole wants something done - It gets done.

So while I was in the hospital dealing with an infection, a large group was busy at work.

 
From what I heard:
Pete from East Bay Wilds donated the design, a crew, some plants and directed the install. 
Jay, Jeff, Nancy, George, Gabor and my dad strained and sweated.
And Katie supplied sandwiches & cookies (This would have brought a big crowd if published ahead of time)

Thanks to all.

Bringing the hospital experience home

Sure I was released from the hospital last Wed but that doesn't mean that I had to miss out on all the "fun".
That's because an outside agency has been shipping drugs and supplies to the house and taught my parents to hang IV antibiotics and flush a line that goes right into an artery. 
This is expected to continue for another 5 (or more) weeks.

Unfortunately neither one of my parents ever dreamed of being an RN so we all get to suffer.

The good news is that one of the antibiotics was switched so I no longer have 8hr injections and everyone gets to sleep in.

Oh yeah. 
Anthem sent me a letter approving part of my prosthetic arm... the non-myoelectric parts.
It's not over yet.

Happy Dance

John is doing a happy dance, not because he got released from the hospital, but because his roommate did. John is still in the hospital awaiting the results from the cultures. Hopefully tomorrow, but at least he will at least have a pleasant evening tonight. Mom

Roommates

I had my tunnel PICC (peripherally inserted central catheter) line installed this morning so now I can have my IV antibiotics and blood draws done from a single port for the next few weeks. Once we get the last antibiotic nailed down by the ID (infectious disease dept) and set up some home care I should be able to leave. Hopefully this will be tomorrow because my roomie has been trying my patience. I know it's not fun being in the hospital and that stress and fear can bring out the worse traits in a person, but I have yet to hear "please" or "thank you" even one time from this guy and he is pretty high maintenance. A couple of nights ago he barked at the phlebotomist for turning on too many lights before making a blood draw and he even complained that his dinner showed up 10 minutes too EARLY!!! A real piece of work.

Stanford is a nice place but...

I really don't want to live here. Met with my doctor this morning and he says that it looks better than he thought it would. He also said that most surgeons would have been happy with the skin he transferred from my groin/hip. The tissue is now considered safe, but unfortunately I am not in the clear yet. The Infectious Diseases Team are treating me with the assumption that I have a bone infection (worst case) and will have me on intravenous antibiotics for (+/-) 6 weeks with regular visits to their offices. (yippee!) The good new: I will be able to have the injections done at home (possibly by my parents)once my PIC line is in and they decide on the best drug cocktail. And more bad news: They have not been able to ID the 2nd bacteria yet AND it does not look like I will get my port in until Monday...so +2 more nights in the hospital. On the upside I have been able to walk around the grounds more and even visited with some of my nurses from D2.

Update on the Franken-thumb

My scheduled 1 hr out patient surgery for Thursday went out the window when pus started coming out of the base of my hip-thumb on Wednesday. After describing my situation to one of my docs I was told that I would have a hospital bed and bags of antibiotics waiting for me in Palo Alto. After checking it out in person he felt there was no advantage to having a rushed surgery but I was moved up the list for the next mornings procedures. Of all the outcomes I feel I lucked out; the finger is now about 3/4 inches shorter, but the tissue looks good and they think the stuff I saw was from the end/dead part of the finger and the hip bone (and more importantly to me) my hand do not look to be at risk. They are still hitting me hard with antibiotics 4 times per day, but I will be able to leave on oral drugs once the cultures come in. Who would've guessed that I would be more scared 9 months after the injury than I was in my Maui hospital bed?

And your 10th surgery is free

I doubt Stanford has this policy, but it sure looks like I'll be approaching this number before I'm done.

My 3rd procedure with Dr Chang this Thursday was not part of the initial plan, but the top of my hip-thumb has died and has to be removed (along with some of the metal plate and bone).  Luckily there's more bone and skin than is required for a future toe-thumb procedure or to still have a function even without a toe being sacrificed.

Watching the dying of part of my last remaining hand (even if it was formerly groin tissue and hip bone) has not been without stress, but not much has been easy the last 7 weeks and hopefully I'll be out of the woods with less than an hour under the knife. 

Thank you Billy and Alanna for the long-distance consult; I don't think I would've made it through the long weekend without it.  It was strange how comforting it was to know that I was not being paranoid, but also that I'd make most likely make it until Tuesday without having to go to the ER.

For those of you wondering where the pictures of the current state of my hip-thumb are posted...
You don't really want to see them. 
Billy even offered to fly out Friday night after seeing some snapshots of it and he's a plastic surgeon.

Texas in Sept?

There is a ton of information for amputees on the internet, but the more I look (and I've spent hours and hours) the more I've started to come to grips that there just are not that many upper-extremity amputees out there.

So many great articles, videos and ads aimed at prosthetic legs users, and while I'm happy to watch things like Aimee's 12 pairs of legs, I'd really like to see even one print ad with an open water swimmer or cyclist with 3 fingers.

Until then, I may have to think about heading out to Olney for the annual dove hunt
Onearmdovehunt.com/WallStreetJournalOnline.htm
.... and get my 40cent breakfast.

The man has got skills

My weekly checkup went ok and although the tip of my "hip-thumb" is looking pretty black, it's getting better.

Instead of posting pictures of that, here's a video/ad that was sent to me by Chris.

Mark Lesek makes his own arm

Playing the game

For those of you wondering when I will get a prosthetic arm:

The mailman just delivered the news from my insurance company (Anthem Blue Cross).
They rejected my appeal.
"A myoelectric arm is not medically necessary".

UPDATE
It looked like they were really screwing me around by saying my doctor didn't supply information that they had requested (of course the requests were via US mail and sent to me only days before their deadline).  After a long talk on the phone they told me they've received documents and are trying to decide if they've made me wait long enough.  I should get an update by Friday.  Not to fear - I have not given up.

New purchases

This week I've been scouring the internet for gadgets that might make my life a bit easier.  Here are a few new additions (to my lock-laces and button hook):

The book was good, but didn't have much that I had not already figured out or could directly use (#2 of his 3 rules is: You don't have just 1 hand.  You have 4 fingers and a thumb.)  It did pay for itself when he shared the New England Handicapped Sports tagline "Hang out with the handicapped.  We're fun to watch."  Expect to see this on one of my shirts/bike jerseys when I can get back out there.

This week I'm going to apply for my disabled/handicap passes from the DMV, CA State Parks and National Parks.  So if easy, cheap or free parking and/or discounted camping fees sound good - I'm your guy. 

Pictures from the doc

Here are some photos from my doctor for those interested. 
Note:  These are surgical shots and look like they are from a text book vs a crime scene, but I realize these are not for everyone.
My hand - pts 1 and 2


I'm still not out of the woods for this procedure, but at least my elbow and shoulder are free.

Post Op and Pain Management

We went to see Dr. Chang for post op this morning. He took off the cast, took X-rays and said that everything looks great (even though John's thumb looks like a sausage to us). We then went next door where he was fitted for a splint. This will be much easier for him, as we can remove it for showers instead of wrapping his arm in plastic. The doctor told us we would need to come in 3 times per week for wound care, the PA said "I think you're mom will do just fine and you can come in just once a week.". Yippee!!! It is about a 45 minute drive each way even if it is only 20 miles. After Dr. Chang we were off to lunch in the cafeteria, then on to the pain management doctor. A one hour appointment, of which we spent approx. 15 min.with the doctor. He is going to do an injection into the neuroma on June 19th - the same day as John's pre-op for the next surgery which is scheduled for 6-25. This one will be on his middle finger, trying to free it up. We had hope to get a schedule of all the remaining surgeries today, but Dr. Chang only scheduled this one. John just wants to see that the end is in sight, even if it is going to be December or later. He is still super positive and anxious to start working out again. Can't for while as he has to keep his blood pressure down and his hand up. This did not make him happy and hopefully he can get on the bike at the club soon. Life is good and we have been enjoying beautiful weather in HMB.

Free At Last - Almost

John's surgery yesterday went very well and he is back in HMB. His hand is now free from his groin and he can put his left arm up in the air over his head. The doctor's are very pleased with the outcome and John is much more comfortable. The only hitch is that he is now in a cast up to his elbow with his three fingers sticking out and his thumb partially exposed. He has to keep the forearm elevated most of the time and especially when he is sleeping, but he does have a lot more flexibility. He is back to using his index finger and his pinky to turn pages, pick up food and work the control for Netflix, etc. My job requirements have changed quite a bit with this procedure. We go back to the doctor on Tuesday and then we should hear when the next surgery will be set. We don't anticipate it being for several months as he has to be completely healed from this one to move on to the next step. Dr. Chang did tell John that he will be getting some exercises on Tuesday to work his arm.  Life is good.

Pre-op Appointment

We went for the pre-op appointment this morning and the surgery is a go on Thursday at 10:30 a.m. John is so looking forward to being free. The doctor has scheduled as an out patient procedure, with the option of keeping in the hospital overnight. Hopefully he can ome home. These have been 3 hard weeks for him being totally helpless, but he has been a trooper - always with a smile on his face for everyone. I am so proud of him - can you tell?

We Have Started the Countdown

Five days and counting until "freedom day" and it can't get here fast enough for John. He is doing very well, but getting anxious for the disconnect surgery and the outcome. The doctor couldn't X-ray the thumb last week when we saw him because it is still attached so we still don't know how well the bones are meshing. We have been walking each day - about 6 to 8 blocks are his limit. Still waiting until we can do the beach trail. All in all everything is great.

John is back in HMB

We are all back in HMB and John got to sleep in his own bed last night. Not as restful as he had anticipated as last night was the first time he slept under covers. Only got up once, but was able to sleep in until 9:15 a.m. That's my boy!! I'm always given a rough time when I get up late and this time I beat him out of bed. Probably the only time that will happen. It continues to be difficult for him to find a position sitting up that keeps his thumb in the proper alignment. May 3rd can't get here fast enough for him, but he is such a trooper and never complains. We just move around until we find one that works. Please keep those emails, phone calls, visits and notes coming. They ate a real boost to his spirit.

Decision Made

John has decided that Tuesday is the day he will be heading back to HMB. He has a doctor's appointment on Tuesday morning where the drain will be removed and some of the staples. I think he is ready to break out of jail and head home to his own bed, shower and a different meal plan. The p.t. at Lytton Gardens was great, but not great enough to warrant 23 more hrs. per day there. He said that he learned a lot and that he can do what he needs to do at home or we will head over the hill to the club. I can't wait to have him home. Mom

Decisions Decisions

Another day at Lytton Gardens. John is so enjoying the p.t. there, but reevaluating whether one day of GREAT p.t. is worth 23 hours at "God's Waiting Room." He is constantly saying "I don't want to get old and end up in a place like this" even though the staff is caring and very kind it's still been very hard on him seeing people in wheelchairs sleeping and his roommate who is 92 talking about wanting to go home. He is talking about coming back to HMB after the. drain is removed on Tuesday. We can take him up to the club each day for p.t. and he will definitely have some input on food when I am cooking. Bernie and I have been bringing lunch each day and Jane and Mike from O.C. have brought dinner the last two nights. After one dinner we decided that lunch and dinner will be provided by family and friends. We can't get in early enough to bring breakfast, but at least he is getting two edible meals. Guess old folks don't care what they eat but we care about what he is eating. All in all it's not as bad as I thought it would be and they really trying to accommodate his needs. Part of the problem is that the population is at least 35 years older than John and their needs are different. Tomorrow is another day and John will be making his decision about whether he will stick it out or vote to go home - hopefully the later. Mom