Day 2 at CTCA

RIt's been a full day and I have an MRI yet to go.  Then I have tomorrow.

For now I am in between appointments.  I'm setting the in the main lobby which is at one end of the main concourse.  In front of me is a 10+ ft Christmas tree.  To my left is a harpist.  Behind me is a faughx fireplace and two fish tanks with tropical fish.   While I wrote this paragraph an older couple left the cafeteria and began singing along with the harpist.  It was 'Moon River'.  It is an interesting place.  This area does not have the feel of a hospital.  It could be a hotel or mall or fancy office building.

All this is overwhelming.  April and I are coping the best we can.  

I work everyday I can so I may spend time with friends and forget about the cancer.  Setting here surrounded by reminders is very taxing.  CTCA does their best to hide the reminders but they walk down the halls and they are behind every wall.  It is a beautiful place but it is a giant reminder. 

It's not a surprise when I say I'm not like most people.  Most of my friends are not like most people.  CTCA spends a lot of time on the psychological aspects of treatment.  All the attendants, food, and window dressing cover the truthes well, but that does not work on me.  I know there's a man behind the curtain.

Will I come back?  Maybe.  It depends on their recommendations.  Ultimately I want the best place with the best people and best outcome.  Reminders will exist no matter where I go from here.  Maybe today's outlook is because I'm tired and grumpy.  Maybe I'm this years Grinch, Frau Perchta, Scrooge, or Kallikantzaros.  Tomorrow is another day.

Day 1 at CTCA completed

We're here in Atlanta, GA visiting CTCA.  We've completed day 1 and we're headed back to the hotel.  I can't call today too productive, but we talked to several people about my case.

We reviewed in great detail what's happened in the past 13 months.  What, when, where, and some whys.  I also shared the CDs I brought with my test imagery.  Dr Broudy (JB) took lots of notes and scheduled my next steps which begin Monday.  What does Monday hold for Me ?   Bone scan injection, MRI of my head, EKG, a talk with a pastor, and a mind and body consultation.  Tuesday has a CT scan and consultation after consultation.

At least we have a free weekend.  We've talked about doing a few things but have not decided yet.

More to come about what we decide.

Just relax

I've spend a lot of time learning to relax in the past year.  Learning the simple relaxation which does not require a vacation or night out or hardly any expenditure at all.  It only requires a few minutes or seconds.  Now I see that most people don't know what it is to relax and some can't relax at all.

When this is done I may join or start a relaxation class or group.  It would be free because why add stress to a relaxation class.  That's seems silly.

Disappointed

Last week I got a telephone call from Dr. Steligas office to confirm an appointment I have in January with him and Dr. Montgomery. The nurse that called ask about a recent CT scan because they want to do another CT scan and insurance was fussing about it. This prompted me to question if Dr Travis was communicating with Dr. Steliga. After that I called Dr. Steligas office and spoke to the nurse.  She's did some checking over the past week and found there hasn't been any communication about the new tumors or for the treatment that I went through. This is very disappointing.  At my next appointment with Dr Travis I will talk about what he's doing or not doing and who he is communicating with. I expect Dr. Travis at Highland oncology to communicate with as many people as possible about the situation so that I can get whatever treatment I need.

In the meantime life goes on.  Today I got my teeth cleaned at the Dr Hanbys office. It was good to see Rolanda the hygienist that always does my teeth. Tonight we're going to eat at San Miguel's restaurant for a fundraiser of sorts.  I'm looking forward to seeing who's there and how it goes. I'm hopeful that this will spawn future events.

Going to Atlanta

My patience is groing short.  Nearly 1 month ago Dr Travis told me that their treatments were not helping.  He told me that I had multiple spots in my lungs and their treatments were not helping!  Through all of this I have believed that this would work out.  This was the first time I questioned my mortality.  Now I must change gears.  We've started several things.

1) Dr Travis sent my tissues to a company for molecular testing.  The results came back last week.  They found that my cancer uses a intercelular pathway called Notch.  Dr Travis says there's a drug trial which works on this Notch pathway and they are working to get me in.  They should know something any time.  I am not waiting for this.

2) I called Advanced Medical something, which Blue Cross recommended.  They are accumulating all my records up to now and they will give a review and second opinion.  My fingers are crossed that they find something which everyone else missed.

3) We contacted Cancer Treatment Center of America.  We leave Dec 25 and fly to their facility in Atlanta, Ga.  April and I will stay until Dec 31.  Terah is coming too but she can only stay until Sunday. CTCA is also accumulating my records and they'll put me through more tests.  They'll have they're own recomendation by the end of the visit.  I have heard good things and bad things about CTCA so my feelings are mixed. 

4) April and a friend (nameless until she says I can use her name) are starting some fundraising efforts.  They opened a special bank account and are using facebook and more to get the word out.  I don't know how far it will go, but my hopes are up.

5) Other friends have some experience with cancer and homeopathic treatments.  We're looking in to it.

As you can see we started several things.  Something must work.

Hurry up and wait

The results are in.  My cancer uses a 'notch' pathway.  There is a company in Houston which has a 'notch' pathway inhibitor, but it is in trial and not FDA approved yet. Hopefully I can become a part of the trial.  Dr Travis is contact them and hopes to know something by Friday.

If I am accepted then it may require periodic travel to Houston, which is not terrible because we have family near Houston, but I prefer my treatments here for obvious reasons.

So there it is.  More waiting.

December is here

This is December.  The past month has been long and slow.  I am just now coming to grips with everything which has happened.

Three weeks ago the doctors told me that all the treatments so far did not help.  The then sent my tissues to a lab for 'molecular' testing.  Hopefully they discover some magic bullet which will help.  Today I get the results.

On a positive note I bought a 2013 Cheve truck and we drove to Wisconsin to visit my sister during thanksgiving.  That was a fun trip.

More to come.

I have my new leg!

I have my new leg!  The insurance papers came in and Snells released my leg late yesterday.

Now I begin the process of learning how to walk.  The hardest part will be streching my thigh muscles so I have a natural standing position.  I have used crutches for the past 2 months so stooping is my natural position.  Also my stump has had minimal stress on it since the surgery so I must work those muscles.  It will be work but I will do it.  The doctors say that most people take 6 months to walk without crutches.  I walked with one crutch after 4 weeks when I had my first leg so I think I can beet the average.

More recent news.  I had an MRI and CT scan on Wednesday.  The results of these determine my next few months.  I'm either done with chemo or I get another surgery and then more chemo.  Needless to say I am hoping for the former.  April is on edge and I'm a little nervous too.  It will work out either way, but one of those ways really, really sucks.  Iexpect to get my results next Wednesday or maybe sooner.

That's all for today.  More soon.

Not much to say

Terah and Patrick were married on 10-4-14.  It was a beautiful, perfect day.  Without any exageration I can say it could not have gone better.  It was like a wedding from Better Homes and Gardens. 

As for me I am doing well.  My new leg is in and I have tested it.  I am simply  waiting for insursnce to approve.  Then I am off and running!!  I am told to expect something in 7-10 days.  This gives me about 26 weeks of training for the Warrior Dash .  I mostly walked in 7 weeks, so I expect to jog and climb.  Remember, the more the marrier.

I started what is hopefully my last chemo treatment today.  The next 5-10 days will suck while my body deals with and recovers from this.  I'll feal better someplace near day 5.  Then each day is a gradual improvement.

Lastly, I went camping with my dear friend DS, my dad and my wife, April Brewer.  We drove to Cambell Point, MO, which is on Lake Table Rock.  As with any travel experience we blew a radiator hose just north of Berryville.  Then the new hose came lose about 1000 feet from the same spot on the drive home.   This made the whole trip better with a small disaster taken care of.  Cambell Point was beautiful;  Everything was well kept, everyone was Ozark Mountains nice, and the weather was perfect.  I would not hesitate to go back.

Now, it's sleepy time.

Good night, every onr.

One more to go

Well, the second chemotherapy round is done. They removed the pump this afternoon. He is feeling very tired and nauseous and is sleeping a lot. No surprise there. He is still very emotional but hopefully it won't be as bad as before.  We have had a long day and are hoping tomorrow will be better. We love our friends and everyone who is still with us, praying for us. We still need as many prayers as we can get. I love you guys! Thanks!!

My first real fall

I just had my first real fall.  I was on my crutches (with one leg).  My right crutche hit something and it slid away from me.  I hit the kitchen floor hard with my stump and right elbow.  Now it hurts.  Not horribly but it does hurt like you would expect; Sore, bruised, stiffening, etc.  We'll see what it's like in the morning.

Walking again.

Snell laboratories in Fayetteville has the best staff I have ever worked with.  I went in with an impossible goal and they enabled me to achieve it.
I lost my leg on August 11 and they removed a chunk of lung on August 25.  Losing my leg was terrible, but the pain with the lung surgery was much much worse.  I could barely role over in bed for days after the lung work.  I ask all the doctors about walking and they said 'maybe in 3-6 months'.  I was dischared from the lung surgery on August 28, which gave me 37 days before Terah's wedding.  I returned to work on September 2 and my first appointment with Snell was about then. 
Randy at Snell worked with me nearly every workday in September.  I went in for 1 or 2 hours each time.  He assembled a temporary leg from parts in their work room and began fitting my stump for a socket.  I used the 'test' socked to practice walking in all my visits and he had a road-worthy socked ready on October 1, which was 3 days before Terah's wedding.  I used the test socket for about 15 hours of practice and then I wore my permanent socket for about 22 hours over 3 days (about 6 hours of actual walking).  Then it was show time.
I walked.  I was able to walk down the isle with Terah while using one crutch.  It was not perfect, but it was perfect for me.  Terah became engaged last fall, which was before my cancer stuff started.  I was diagnosed with cancer and Terah offered to postpone, but I said 'no'.  Then they removed my leg and she offered to postpone, but I said 'no'.  I promised to walk down the isle on October 4 and I did it.  It was probably the hardest thing I've ever done, but Terah's smile was worth it.

The return of Chemo

My first chemo treatment since losing my leg started Wednesday, September 17 and ended the 19.  It was horrible.  It started with about 3.5 liters of fluid and medicine via IV.  Then they attached a small pump of medicine which I kept for 48 hours.  That red Medicine did terrible things to me.  The nurse who attached it dressed in FULL protective gear .   This included a face shield, head to toe coverage, and double layer gloves.  Her instructions to April included "if this leaks do not get it on you. It will be like a brown recluse bite."  Holy Cow !!!  They are injecting this into me.  I believe the goal of the medicine was to scald the interior of my blood vessels of anything living or free floating.  I believe it did it.
The next several days were rough.  The chemo started at 4 PM on Wednesday.  I awoke on Thursday to a Ievel of nausea which I've never had before.  I had pills for it but the barely helped.  I could only eat soup and crackers Thursday Friday and Saturday.  On top of the nausea was my working hard to fight the chemo.  While it was scalding out the lining of my blood vessels my body was trying to rebuild itself.  This took a lot of energy, but i was not eating, so my body was pulling from all its reserves.  I lost 10 pounds in those 4 days.  With all my energy going to that I had no energy for moving to the couch, or eating, or having intelligent conversations.  It was Sunday before I could eat a normal meal.  I made it to work on Thursday morning, but I left early.  After that I was down until the following Tuesday.  I did get out with April and my dad for small trips to town, but that was it.  I hope the next round is less dreadful.

Catching up...

The past 3 weeks were a tornado of activity; 1 chemo treatment, illness, work, and 1 wedding.  There is no way to summarize everything so I will write a blog for each.

Chemo again

Here we go again!  Another chemo for Damon.  Terah's wedding was gorgeous and Damon did a  fantastic job walking her down the isle and the father daughter dance.  Everyone was crying !  We are glad that the Clarks had a great honeymoon.  They went to Branson and stayed at a new resort and played and went to SDC, The Wax Museum and even went to Ripley's Believe It or Not!  I am jealous. They told everyone they were on their honeymoon and of course received perefential tretament😊. We raised our daughter right!  Damon and I had a even better time spending time with his sister Angelica, but I call her Kelley.  She ran around town with us and helped us do a few last minute things for the wedding, went with Damon to a Snell appointment and was able to see what it is like to work on getting a  prosthetic, and then she spent Monday night with Damon and I at our home watching Tropic Thunder.  She had never seen it!

Damon has been dreading today. Mainly because he knows what comes along with it.  Tiredness, nausea, all of it.  It is definitely not fun but he knows that it needs to be done and continues to be a complete inspiration to me.  I made a joke about next it would be me who lost a leg and it would be the left on so he and I could walk together.  He asked me if I thought I could do it. I thought about it and I know that I don't think I would survive it. I think that I would lose hope. But I also know that I would have him next to me to give me more hope than I ever thought possible because he does that every day for me already.

I am not looking forward to the next week but I will be next to Damon at all times, whether he wants me there or not!😍😛

Sorry that the blogging has been behind lately.  We just had so many things to do to get ready foe the wedding that we had no more time. If Damon wasn't practicing to walk with the prosthetic, at work, or fighting chemo, he was asleep.  Me as well.  So hopefully now we will keep you updated better.  Love all of you for being such great friends and sending us your love, compassion, caring and prayers. Please keep it up cause we are still fighting!! 

Big day

It is Saturday, October 4th at 1am.  My daughter Terah Brewer and Patrick Clark get married in 15 hours.  Everything else has been on hold, including my blogging. 

I'll catch up everything when this is done.

He is preparing

I went home early on Wednesday because I was exhausted from our recent and on going situation.  Damon did have an appointment at Snell to fit his loaner prosthetic.  It was amazing!! It was the first time I saw my fantastic husband walk on 2 legs since August 11, 2014!!! I wouldn't have missed it for the world!! He is such an inspiration to me. He makes me want to work harder on the things I need to work on, to be a better person and to not take one single day for granted.  Thanks you Damon, for loving me and inspiring me. You mean the world to me and I will always be by your side to help you, cry with you, hug you, hold your hand and provide you with the kind of life you have always provided for me. I love you. Keep up the fantastic work! YOU ROCK!!

No need for thanks.

NO NEED FOR THANKS!!Although I know that you feel like you should say something.  You have always taken such phenomenal care of me. I love you more than words can say and I look forward to being you for many many MANY years to come. I love you, my husband.

Status update

The last 5 days were rough.  I lost 11 pounds since Wednesday!  Quick math tells me I burned 6,600 calories more per day than consumed.  This is easy to believe because I have barely eaten and my body is on overdrive.
Yhey removed the chemo pump on Friday and tonight is my first normal sized meal with the assistance of some SaddleBock libations.
Thank you, Terah and Patrick, for watching Loki.  Thank you, Dad, for taking me to WalMart.  Thank you, April, for everything else.

Starting my new chemo therapy

The sage Don Henley sang "Kick 'em when they're up, Kick 'em when they're down, Kick 'em when they're up, Kick 'em when they're down, Kick 'em when they're up, Kick 'em when they're down, Kick 'em when they're up, Kick 'em all around"

Last Saturday was a beautiful day.  Dad and I added decking to the platform which holds our hot tub.  Now I can safely maneuver myself as I get in and out.  I also filled the tub and turned it on, since I emptied it before my surgeries.  It was warm by mid Sunday and I climbed in Sunday night.  I can not describe the relief the hot tub gives me.  A hot bath has been one of the few consistent pain and stress relievers at my disposal.  Thank you, everyone, who made this possible.

Sunday was an inside day for me.  I spent Sunday on the couch or in my chair, except for the short time in the tub which was just before bed. Monday was a good. I worked and ate lunch with my friends. Tuesday was was nice, but I did get 'pick' line installed. The 'pick' line is a fancy semi-permanent IV which is inserted in to my upper arm. It enters the main vein there and then travels to within about 2 inches of my heart. This is for my chemo, which I am doing as I type this. This bring me to today.

I am sitting in a recliner at Highland Oncology and receiving my latest cocktail of chemo therapy drugs. These are supposed to be better than the last round, which was before my surgeries. This cocktail is based on the pathology from the tumor they removed from my leg. Hopefully this chemo treatment and the next will eradicate any stray cancer cells lurking in my body. Dr Travis referred to it as a 'leap of faith.' I am leaping.

My overall state is tired. I slept an extra hour on Tuesday and still barely gathered the energy to go to work. I am glad I did because my friends energize and inspire me. They are great people. Today (Wednesday) I woke up tired and went back to bed. I woke up again and could not get moving so I emailed work and then stayed home. It was too hard to do anything. I suspect my mood and energy level are affected by the Gabapenton, which is the medicine I take for the pain in my phantom leg. It mostly helps that but has side affects which can ruin my day. It may be tiredness or irrational emotions or fatigue or all of these. darn.

About the Gabapenton. We ask the nurse and she spoke to the doctor about it's side affects. They offered to switch me to Lyrica. I call CVS and they said it's basically $1 per pill, which is a lot more than the Gabapenton. If the side affects disappear then it's worth it. I must slowly come off the Gabapenton before I can start the Lyrica, which makes first dose Sunday or Monday. We'll see what happens.

That's all for now. I continue to appreciate everyone's support. I am surrounded my very special people. I cannot describe how much everyone means to me. My current team. My previous team. My teams from years ago. I can feel your thoughts and prayers lifting me every day.

Chemotherapy round 2

Well, here we are again at Highlands Oncology.  They found out that the tumor was not muscle related, but bone related.  Meaning that Damon has a bone cancer. They do consider him cancer free right now and they are hoping that the new regiment drugs will kill any cancer cells that he may have. He has a great nurse that is doing a fantastic job taking care of him.  

He ended up being very emotional again this morning.  Last night he could not rest so when got up he just decided to lie down on the couch and then stayed there until it was time to get ready for chemo.  While he was get ready for the shower, our dogs started to fight. Tunney, the Corgi, and Frodo, the Jack Russel, ganged up on Loki, the half Pom half Chihuahua.  It took me a few minutes to break it and then I kicked the big ones of the room.  I was checking on Loki to make sure they had not done damage, when Damon came out of the bathroom and was crying, wanted to make sure that Loki was ok.  Loki is just fine. His fur was a little wet but no injuries.  Thank God!!! I am not sure how Damon would have taken not. He said he is purposely not going in the living room, where the other dogs are, because he did not want to hurt a dog.  

I have to say that I have no idea how to handle his emotional times.  I have been with him since I was 13 and he was 14. We have been through a lot together and are still as much in love as we have ever been.  But when he has a break down, To be honest, I am scared.  Imagine the one person in your life who has always been the rock of the family, the one that got things done, could handle anything and always did it well is suddenly the now who needs your help the most. I love this man more than words can say. He has been the "constant" in my life.  I worry that I will not to be able to take care of him as well as he has taken care of me and his family.  To fail in being there for him or not be able to make him feel better or get the things that he needs, etc., would be the worst thing. I have no words for it.  

To everyone who has been there for him and us, I thank you more than could ever know!!!! Damon will be posting an addition to his blog soon as well.

Life is a roller coaster

I have had a roller coaster 3 days. It started when Dr Montgomery raised the dosage of my medication.  I took the first larger dosage on Tuesday afternoon and then again on Tuesday night. I woke up Wednesday morning, went to work and everything went well but I was tired.  I took another dose at lunch and became extremely tired. By the time I left work I had a hard time thinking.  During the drive home I saw a car accident (I was not involved) and I became a little emotional about it but not too bad. When I got home and began talking to April I became very emotional.  Just as I did last week when the medication took control. I sobbed for several hours and April comforted me.  I have a love/hate relationship with that medicine.  I need it so my phantom leg is tolerable, but I am sensitive to dosage changes.  April spoke to the doctor on-call and we devised a new dose.  As of Thursday morning I am me again...again.
Thursday was a very good day.  Wednesday and Thursday were spent in a class at the corporate campus.  While there I visited with some dear friends.  I even learned a few things in the class.   My good Thursday started when Dale, another person in the class, said he had extra tickets to the Jake Owens concert which is Thursday night!  I snatched them from Dale and I told April the good news.  Now that I have plans I must get forearm crutches.  The wheelchair will be too difficult to maneuver in the AMP arena.
My adventure to find crutches start at Snell's, the prosthetics place.  They do not have crutches.  I call Colliers by the hospital and they do not.  I call Colliers on Dickson.  They have one pair, so off I go.  I find their crutches and go to the counter.  The young lady tells me they can nit process crutches on a prescription, which I have.  They cost almost $70 each so I skip them.  The young lady suggests a medical supply place on Market St.  I call them and they do have crutches so I'm off again.  I'm almost there when they call me and say 'sorry, they're actually out.'  Darn.  While we're still on the phone a person in the background finds their last pair.  I finish my journey and get the crutches.  Whoopee!
The concert included The Cadillac 3, The Eli Young Band, and then Jake Owens.  Music started at 7, Jake started a little after 9, and it lasted until after 11.  April and I left about 10:30 so I could get out more easily.  We had a great time and we saw other people I knew.  The opposite of the night before.
Forearm crutches are more difficult then I thought they would be.  It requires shoulder and back muscles which I have not used in a while.  I'll get used to it, but it may take a while.
Friday I use the wheelchair at work because I am too tired after the late Thursday night.  Work goes well and I leave about 2:30 because my phantom leg becomes very twitchy.  Imagine if your leg began cramping in random muscles from your toes to your thigh.  it like that but there is no leg and you can't do anything about it.  It's extremely uncomfortable to say the least.
Now I am home with April.  She does not feel well, so I'll be caring for her a bit.  This will be a challenge on one leg, but I'll my best.  She's been caring for me.

Good news at the doctor's

It was all good news from Dr Montgomery and Dr Steliga.  All my incisions are healing well, my x-rays are clear, and I can get in the hot tub.  I thought I was getting a CT scan today, but it was a chest x-Ray for Dr Steliga.  I have another follow up with them in January.  Otherwise, no more Little Rock for a while.  I still have chemo in Fayetteville, but no long drives.

Another day, another trip to Little Rock.

Another day, another trip to Little Rock.  This is a follow up to the two recent surgeries.   At 1:45p I get a fresh CT scan and then at 2:30p is the appointment with Dr Montgomery and Dr Steliga.  Tuesday is not a normal office day for Dr Steliga, but he's coming in for me.  Aren't I special.

So far today has been rough.  Neither April or I slept well last night and I am sore from head to toe.  April is still sore from her fall on Saturday.   This will be a long car ride.

I don't remember mentioning Aprils fall.  She was walking the dogs on Saturday.  The ground was slick from the rain and she stepped in some poo.  Her foot slid away from her and her other leg crumpled and she hit the ground.  She heard a 'pop' from her leg as her knee folded and her heel hit her butt.   Now her knee and big toe are sore.  She's dealing with it, but I know it hurts.  My girl April can be a tough one.

We've passed the Arkanchunnel and I plan to eat lunch in Conway at David's Burgers.  I was told it's good.

More later about David's and the appointments.

Walk-through at the Chapel

Terah, Patrick and I went to St Catherine's at Bell Gable on Sunday.  We walked through the ceremony and talked with the people there.  When I 'walk' Terah down the isle I need to walk, roll, or hop about 100 feet.  This is long ways when you're hopping.  Terah and I did it as practice and I had to stop twice to rest.  At the end I was sweating hard and I had to set down.  I need to practice this in case no leg is ready.  We also looked at the barn where the reception is held.  There are steps to enter the barn, but these are not a problem.  The coordinator said they have a ramp if necessary.  After St Catherine's we ate lunch at The Market Place and then went grocery shopping.
I was exhausted after all that.  I try to not completed exhaust myself, but the wedding is worth it.  I got home about 5:30pm and was lazy the rest of the night.  April and I lounged on the couch, ate left-overs and then went to bed.
Other than Tuesday, which is another trip to Little Rock, I plan to work a full 8 hours every day this week.

Last day for the MealTrain

I now have the first piece of my prosthetic leg.  It's a gray, translucent, rubber boot which covers my stump.  The boot has a threaded port at the bottom for attaching to my new leg.  I wear it while I'm awake and take it off at night so my leg can breathe.  It's less comfortable than the cloth shrinker but I'll get used to it. 
I've declared today a day of rest.  I've spent nearly the whole day on the couch.  I woke up this morning with a very sore right arm and hand.  I must have slept on it all night.  This makes using the walker more difficult, but it's still very doable.
I scared April this morning.  I was laying on the couch when she got up.  I propped myself up on one elbow to talk.  As I leaned my heart began racing.  I could feel it beating hard in my chest and I became a little short of breath.  I set up and said 'I don't want to scare you but I don't feel well.'  I describe the situation and she wants to call 911.  It begins to ease and she calls my dad instead.  10 minutes later I am fine.  If it happens again then I'll probably say OK to getting checked.  I'm passed my out-of-pocket for insurence so I should get everything check which I can.
Tomorrow we meet Terah at Saint Catherine's so we can walk through the ceremony.  I need to see the path I'm walking so I can prepare.  Everything points to me having a leg by then.  I'll start working on plan-B just in case.
Today was our last stop on the meal-train.  Last night Gary Ruisinger brought Jim's Razorback Pizza and tonight Daniel and Deborah Summers brought Olive Garden.  Both were delicious and appreciated.

Getting back on the chemo train

We met with Dr Travis yesterday and I now have my schedule for the next few months.  I start a new round of chemo on September 17th.  This chemo is delivered over 3 days via a small pump which I keep with me.  This chemical is harder on my veins and heart muscle, but it's easier on my body as a whole.  Perhaps some nausea, but that's all.  I repeat the process on October 8th and maybe a third time in November.  Hopefully that gets everything.  We ask Dr Travis about the certainty of this treatment and he referred to it as a 'leap of faith'.  He also said that without the treatment that the cancer would return, so we go with the treatment.  Today I get an echocardiogram to check my heart for defects.  This is preventative because the treatments affect on my heart.  Next week I go to the Walker Heart Institute to install a 'pick' line for the medicine delivery.
On a happier note I am really looking forward to camping this fall.  I missed the chance to go last spring and summer.  I enjoy setting around the camp fire with friends and family.  All I do is stare at the fire and gather wood for more fire.  It is very restful.  I have a few friends lined up to go with me.  Time can't pass fast enough. 
The pain-of-the-day is muscle spasms.  My stump changes daily.  As muscles and nerves heal in my stump the combination of signals to my brain changes.  The signals are interpreted as if I have a leg, which I don't, so they feel like something different every day.  Today it's muscle spasms.  It starts whenever I'm seated for any length of time and lasts until they're done.  Yesterday's pain was cramping.
Lastly I want to thank everyone who has brought food for the meal train.  April and I appreciate it and I enjoy seeing the smiling faces.  We live away from town and finding our home can be an adventure.  I Thank you, Anastasia, Mitchell, Bonnie, and Bobbi and Ben.

First day back to work

Today was my first day back to work since my leg amputation.  It went splendidly.  I deleted about 2000 email and soon I'll be back up to speed.  I'm very excited.  Everyone I spoke with was supportive and glad to see me.  I work with great people.
Today was also my first full appointment with Snell Prosthetics.  We spoke for about an hour about types and time lines.  My goal is to walk before October 4th fof Terah's wedding.  I am very encouraged after the conversation at Snell.  As a backup plan I also bought the material for casting my leg in case I must build my own prosthetic.  We may build one anyway because how cool is that.
The biggest downer of the day is the phantom pain in my right foot.  Periodically I feel an electric shock on the bottom of my missing foot.  April gasp the first time I nearly collapsed in the floor from the pain. After the 4th or 5th time she chuckled a little.  I don't blame her.  I know it looks quite comedic and I must laugh a little too in between the convulsions.  Seriously, it feels like something the Vietnamese did to Rambo in an 80s movie.
I return to work again tomorrow.  I plan to work half days this week so I do not overtax my body.  I am super happy about working again, but I recognize I am not super human.  At least not until I get my bionic leg.

Goal #1 done

My first goal is done!  I am back at work this morning.  I plan to work half days this week so I don't push it too hard.  It feals good to be here.

My first fall since the surgery

My first fall finally happened.  April, Terah, and I went to the movies.  We watched the ‘Teenage Mutant Ninja Turtles’ which was entertaining but not great.   The 4:40 matinee was mostly empty so I decided I wanted to watch from one of the upper rows.  I park the wheel chair and we begin up the stairs.  Hop.  Hop.  Hop.  I reach the third row with no problem.  Next, I reach over and grab the armrest with my right hand the top of the row 2 seat with my left.  Hop – swish, my foot slides as soon as it hits the hard, non-carpeted floor.  Terah said I went down as straight as board.  I held my grip on the arm rest and row 2 seat as my foot rushed away from me and my body went down.   My butt hits the floor, followed by my left elbow and then by head.  Thankfully I go down as controlled as possible and it’s a relatively soft landing.  The only damage is a sore left elbow.  Lesson learned.  Theater floors are often wet.

The rest of the day was a good one.  April and I lounged around and did a lot of nothing.  It was very restful.

I think I'm me again, world!

I now feel like me.  We re-balanced my medications and I feel much much better.   This is the first time in my life that I have medication which required such close scrutiny.  Hopefully I will not be on these for too long.  This is a powerful lesson learned.
April and I went to the Prairie Grove Clothesline Fair this morning.  The sun was shining, we met several nice people, and I bought a small wooden cabinet to organize my junk.  I believe this is the first item I've bought strictly for myself from a craft fair. Maybe I need to check those meds again.  We met a talkative woman who was also an amputee.  She had some recomendations and prostetics and life in general.  We left as it was becoming hot and ate lunch at Jim's Razorback Pizza.  We like their Spanish Pie.
I'm torn about using the handicapped parking spaces.  I am handicapped, but others need it more than me.  So far it's a case by case parking situation.   We've used it at Walmart and I-Hop (that's funny right there), but not at Denny's or Jim's Razorback.  It all depends on the terrain.  Some parking lots are not conducive to wheel chairs.  Example:  The parking at the Fayetteville Best Buy has a long slope.  It does not look like much, but that is a chore in a wheel chair.  It's doable, but we used the special parking.
I appreciate the special notes from my last post.  Normally I would not share such things, but I want everyone who may read this to know that there are hard days.  Having cancer and losing a limb are painful and traumatic events.  There are good days and bad.  There are good hours and bad.  The goal is to have more good and to find that little bit of good which is hiding in the bad.
My final thought of the day: People say 'every cloud has a silver lining.'  This is wonderful until a silver laden cloud comes crashing down around you.  It hurts.

It's not all sunny skies

The past 3 days have been long, stressful, painful, and almost completely not pleasant.  April said I finally 'broke'.  I say I suffered from a biochemical imbalance.  In either case it was not fun.
Everything started on Tuesday when I was still in the hospital.  I was far weaker after the lung surgery than after the leg surgery.  I could barely breathe and therefore barely do anything else.  I think this started a chain reaction which deeply bruised my self-confidence.  The lost confidence degraded my ability to handle pain, which lowered my ability to do things, and repeat.  When I left the hospital on Wednesday my self-confidence was about 30% of normal.  Between my leg, both real and phantom, and my back the pain levels were pretty high and my pain tolerance was pretty low. 
April and I stayed in Little Rock that night.  I had left over pain pills so I did not get the new prescription filled.  This was a mistake.  I could not roll over because of the pain in my back.  I was constipated and I think this was pressing on my sciatic nerve, which caused more leg pain and some general discomfort.  I pressed on until the pain was more than I could take then we found a 24-hour Walgreens.  During all this I took extra gabapentin which is supposed to help with the phantom pains.
Thursday we met Chris for lunch and drove home.  The whole day was spent trying to control the pain.  I took oxycodone, gabapentin, ibuprophen.  Everything helped a little, but nothing stopped it.   It's important to know that I had several distinct pains to deal with.  Each pain with its own medicine and its own lifecycle.
When we got home I was tired and grumpy and more tired and more grumpy.  By bedtime I've taken a lot of medicines, probably too much.  April and I go to bed and after a short conversation I emotionally explode about everything.  I spend most of the next 30 hours crying about things.  Everything is emotionally magnified and traumatic to me.  I cried because Loki (our little dog) was my friend.  I cried because Coacoa (our cat) was my friend.  I cried about everything.  Poor April was trying her best to console the inconsolable.  This was my world all day Friday too.
Saturday started about the same. It was a little better, but not much.  April contacts the doctor on-call for Dr Kiser, who proscribed the gabapentin.  We contact Dr Means and he says to change the dosage.  I think I overtook the gabapentin on Wedneday-Thursday.   It works on your nerves abd a side affect is depression.
I felt better by Saturday afternoon.  Terah visited and brought etoufee for lunch, which was yummy.  She also helped me prepare the hot tub for water.  Then we went to my dad's and ate BBQ ribs, which was super yummy.  Then I fell asleep in their living room.  We went home and I went to bed.  April woke me up at 7:30pm and I ate a sandwhich and I went back to bed.  I slept most of the night.
Now it's Sunday.  My leg is still soar, I feel much more like me.  I will watch my medicines more closely and my journey continues.

Preparing to leave Little Rock

Last night was a very long night.  I thought that I could use my existing pain medication until I got home.  I was wrong.  At 11pm I was up trying to find a 24hour pharmacy to fill my new medicines.  Those allowed me to sleep.  For some reason I still woke up every 2 hours.
This morning was my first shower since the 10th.  The hot water felt very good.  I can not soak yet, but I can shower and scrub.
Breakfast at the Wingate by Wyndham was exquisite.  I had eggs and sausage and toast and a biscuit and I ate all I wanted.  The hospital food was good, but eating on the outside is so much better.
We are preparing to leave the hotel and head home.   We'll stop several times to stretch so home is still several hours away.  I want to visit 'The Container Store' before we leave Little Rock.  Terah and Patrick went there when they were here.  They may have handy containers for my new chair or walker.  And I want to see a store which sells nothing but containers.  How cool is that?!  If only 'Spatula City' was next door.  That would be the bomb!
I'll report later about 'The Container Store' and I'll see some of you soon.

I'm out of hospital

I am out of the hospital and now resting in the hotel with April.  Trish and family will visit soon and I do adore that baby.  Maybe we'll chat in the hotel or maybe  walk-n-roll around the local mall.  Whatever we do it will be in AC.
I'm still leaking from some small holes, but I'm glad to be out.

That was a room full of white coats

Dr Montgomery and his team of 4 came in.  They looked at my leg stitches and then removed them!  Awesome!  We also talked about the tumor and my long term prognosis.
The pathology department identified my tumor as bone related.  I do not remember the long name.  This partially explains why it did not respond to the previous chemo, but it also means that I have more chemo coming.  While Dr Montgomery's team removed my stitches Dr Stelig and his team of 4 came in.  There were 6 doctors, 4 students, and me in the room.  My nurse (Shelly) looked in and said she would come back later. 
Dr Stelig said everything looked good and I will be out today.  Both doctor said my margins (the flesh surrounding the removed tumors) was clear, which is tremendous news!  I still get more chemo in Fayetteville, but this is precautionary.
As I write this I am setting in a normal chair, I have an IV in my left hand, but it's not attached to anything, I can breathe nearly normally, and I have a full tummy.  Breakfast was very good, but that may be because I'm in a good mood.  I am not attached to anything and I have no stitches.
My job today is to wait patiently.  I expect to be out today, but it could be any time from now to 10 tonight.  April and I may drive home or we may stay in Little Rock one more night.  This primarily depends on when I'm released and then on how we feel.  In either case I will sleep next to April tonight.
Upcoming:  I will call Dr Montgomery's office on Friday afternoon.  They will setup another appointment on a Tuesday so I can see both Dr Montgomery and Dr Stelig on one day.  I expect to get a fresh chest x-ray that day and maybe another CT scan.  They will also coordinate with Highland Oncology in Fayetteville so I can get more Chemo. 
That's all for now.  I feel good and I'm raring to go.

It's Wednesday and I'm OK

Wednesday morning is here and I am doing much better.  They gave me a breathing exercise apparatus on Monday.  If you've been hospitalized then I'm sure you've had one of these.  Monday I could barely inhale 500ml.  I could inhale nearly 1200ml by the end of Tuesday.  This morning I can inhale a little more than 2000.  I think 2000 is within the normal range.  Prior to the surgery I could get to 3000 so this is my goal.
Dr. Stelig's team visited at 6:45am.  They say I'm doing well and I expect to be discharged today.  The pain associated with the chect surgery is mostly gone.  Using my upper body is still a strain, but I can get up and down and move around the room.
The pain from the leg surgery is now center stage.  I need to get back on my regular perscriotions so I can restart my exercises and recovery.
...doctors are here.  More to come...

Tuesday evening

It's still Tuesday.  April returned to the hotel and I finished dinner.  I am much better now than this morning. I slept several hours last night but it was only 15-20 minutes in any one segment.  I knew this would hurt, but I did not anticipate that much pain or exhaustion.
They removed my chest tube from my back around lunch.   The tube was inserted between some ribs for better stability.  Ribs are tough, but this small tube felt like a 3 inch PVC pipe.  It took a few hours to adjust, but I can lay on my back now without too much discomfort.  The act of laying down still hurts, but I can stay there once I reach the bed.  The adjustable hospital bed helps this.
Charlette, Aprils step-mom, and Denise, Aprils step-sister, left this afternoon.  These are wonderful people.  I was glad for their visit.  I expect to see our niece Trish and her family tomorrow. 
I think the first 30 hours of this recovery is worse than the first 30 of my leg removal.  I am getting better faster and I expect the next 30 hours to be full of recovery.  I also hope to be released tomorrow.  In any case we'll stay in Little Rock until Friday for the follow up appointment about my leg surgery.  I believe they will remove my stitches on Friday, which will make me very happy.
I need to ask both the leg and chest doctor about my return to work.  I plan to return on September 2, but I need the official OK from the doctors.  I'll need some time off and flexability for appointments, but I really miss my friends.
That's all for now.  It's only 6:30 pm, but it's sleep time for me.
More later.

I am up and mostly mobile

It's Tuesday afternoon.  I am setting in the chair and waiting for lunch.  April left for a few minutes to help Charlette and Denise at the hotel.
Yesterday sucked really bad.  I woke up from surgery at about 9:30 and was stuck in the recovery room until 4pm because no room was available.   It was so very hard to breathe.  I could only inhale enough to speak about 2 words at a time.  I had a chest tube in my back and every movement caused pain.   Any exertion caused me to lose my breath because I could not inhale enough to stay oxygenated.  I spent the first 20 hours focused on breathing.  After any exertion I could inhale barely enough to quietly say 'better'.  That's how I spent Monday night.
Now it's time to rest.  More later.

A super special Thank You

I want to say a special 'Thank You' to Sarah and Candice and Cindy.  The last 24 hours hurt a lot and these three nurses did all they could to help me manage the pain. 
I'll write more later. 

Room F824

Sorry it has taken me until now to post Damon's room number.  He is in F824. As of yesterday about 5:30 he was very sore. It is difficult for him to breathe due to the chest tube.  Hopefully it will come out sometime today. His output is minimal.   He wanted me to let you all know that he will begin blogging after the chest tube is removed.  He is in great spirits, as usual. The doctor said that as long as his bleeding was under control and he was breathing was ok, he should be able to be discharged, hopefully on Wednesday.  I am looking forward to that!!  I always have a hard time sleeping when he is not next to me.  Well, that is all for now. I am sure there will be more to come!!

Good news

Damon is out of surgery!! Everything went great!! They got the tumor and did not see anything else that looked suspicious.  He was in surgery less than an hour!!  He has 2 small incisions and 1 drain tube. Dr. Stelig thinks he could be checked out as early as tomorrow afternoon or Wednesday.   So he and I will be able to spend time together just relaxing while waiting for his post-op appointment to have his stitches removed on Friday at 1pm. He is in post-op now and should be in a room in a few hours. I will let everyone know his room number as soon as I know it! Prayer works!!!! Thanks to all of you for your time, compassion, prayers and friendship through this ordeal. We love each and every one of you!!!

Pre-op

Damon has been prepped for surgery. He is starving!!! (HAHAHAHAHA!!!) More to come later.

Surgery day

Damon has been taken to pre-op.  Surgery should begin in about 1.5 hours. I will update soon.

Time to go...again

I am about to leave the hotel to go to my lung surgery.  I am electronically disconnecting and I will return when I get my gadgets back in the hospital.  Until the, everyone, I love you all and I continue to absort all the well-wishes.  They do give me support and encouragement.

April and Terah will take over the fresh updates while I am not available.

We'll speak soon.

Yet another 'night before'

I am 9-ish hours from my next surgery.  Hopefully this is my last surgery for a long long long time.  We are settled in the hotel and I am as ready as possible.  Today was not an uneventful day in itself.

The pucker event:  April was driving us south on I49.  It was clear skies and sunshine and we were passed the Arkanchunnel.  We were cruising at about 75 in the right lane with people behind us and also in the left lane next to us.  We quickly approached a line of stopped vehicles on the right shoulder.  April began counting the RV's and trailers as we passed. One...Two...Three...Four...Five...Six...Holy Crap!!!  April hits the breaks HARD and the tires begin to scream on the asphalt.  I feel the car begin to float on the road because we are losing traction but April maintains control. The MORON in the front of the train of stopped RVs decided it was time to go!  He, from a dead stop, pulled out into traffic!!!  April took us from 75 to 20 in about 100 feet without losing control or hitting another car.  She litterally saved us.  If the driver of the red truck reads this I want to say "You are a MORON!"  I will leave it at that.

The uplifting event:  April had to pull over about 2 miles down the road and we decided to stop in Rudy to change drivers.  We stopped at the big station there and as we were leaving I hear "Hey, Damon!"  Brian Thompson, a long time friend from work, is calling my name.  This was a wonderful coincidence!  He said he was following the blog and then we talked for several minutes about everything.  This inspires me.  I had no idea so many were following this and I promise to continue.  This is for you.

The Funny event:  We get to Little Rock and meet Terah and Patrick.  We decide to eat at Macaroni Grill which I really like. This Macaroni Grill has a 20ft ramp inside from the front door to the middle of the room.  We eat a great meal and I ask Terah to help me up the ramp as we leave.  Of course she says "yes".  As she pushes me up the ramp I begin dragging my foot.  The harder she pushes the harder I press the floor.   I press so hard that my shoe is chirping up the smooth concrete floor.  To her credit she got me to the top.  She could have been pushing a small car up that incline.  All I hear is how hard that was and she had no idea it was like that.  I tell April what I did and she explodes in laughter.  Terah gets in the car, wondering what is so very funny and we tell her.  Everyone laughs but her.  Then she laughs too.  Terah is the best daughter anyone could ask for.

Good night, everyone.  You'll hear from me tomorrow.

We're back....

I am Little Rock, AGAIN!! But we are beginning to see a light at the end of this long dark tunnel. He has to be at UAMS at 5am.  Right now we are back at our hotel for some much needed rest.  Thanks to Chris Haynes we got an amazing rate for their best suite!! The bathroom is bigger than both our bathrooms at home combined!!  Our daughter and our future son-in-law are here with us. They are staying with us tonight and will be heading home tomorrow after Damon is in a room.  Plus, my stepmother and stepsister will be landing about 8:30 this evening!!! I can't wait to see them!!
Again, I have to say "THANNK YOU!!!!!" to all of Damon's friends.   I knew that he had a lot of friends, but I never dreamed that you ALL would make me feel special and that you consider me as good a friend as Damon. Honestly it has kept me sane.  I don't think I could have gotten through this without you!!!-  I will be posting here while he is in surgery to keep you all informed.  Please take care of each other and know that we miss you.  

Again, thanks for everything and for being there when I needed a hug.
More to come tomorrow!!!!

Fear of the unknown

It's Sunday morning, I'm watching 'The Great Gatsby' with DiCaprio, I ate leftover Jason's Deli for breakfast, which was still delicious, and I'm 21 hours from my second surgery.
This surgery has me much more apprehensive than the first.  My leg was tangible.  I could poke the tumor and it cried with pain.  I could massage the tumor and it relaxed. I could attach the x-rays films and MRI images and CT scans directly to an object which I could touch and squeeze.  The chest tumor is not like that.  I see the pictures, but I feel no pain.  I'm told of the danger, but the tumor does not affect me in any way that I can tell.  It is a silent danger which is growing and hiding inside me.
I've written about fear and my only fear is that of the unknown.  This tumor is very unknown and therefore generates some fear.  There is too much unknown and I must accept that because I know that time is of the essence.  3 weeks ago I spoke with Dr Stelig and said with much bravado 'Let's do it as soon as possible.'  Now it's here and I wish I had a pause button.  By all accounts this will affect me much less than losing a leg.  There are 0 long term disabilities from losing a nickel sized sphere of lung tissue.  I know all of this but I am a thousand times more nervous.
So here we are.  We leave this afternoon for another drive to Little Rock.  Tomorrow morning at 5am I will sign-in at UAMS and they will take me back for a few hours of the dreadful sleep that you only experience in an operating room.  Then I will wakeup to a 3-4 day stay in the hospital.  I look forward to seeing Charolette, Denise, Trish, and everyone else who may visit.  This is what helps me look through the fear of the surgery.  I will see my family and friends and the fear will be behind me.

A hot day in NW Arkansas

Today was HOT!  Simply going outside was instsnt exertion.  I probably sweat a full gallon of fluids.
Jeff Kulbeth mowed our lawn this morning, which may be the last time this summer.  It was 8am and already sweltering.  He stayed and visited with me and I had a good time.  He and I and others are looking at methods of modifying my mower so it is accessable to me.  This will be a fun project after I'm healed.
After Jeff's visit I picked up my mother and we went to the Fayetteville Farmers Market.  This is at about 10am and it's even hotter.  I drove my truck and used my wheel chair. The Fayetteville square was packed with people and this was the my largest public appearence so far.  We made 2 laps.  I bought a mellon and apples.  My mom bought lamb chops and okra.  Then we went to Harps and headed home and it was time for a nap.
Last night April and I went to dinner with Bobbi and Ben Boyd.  These are wonderful people.   I had a great time talking about everything; my situation, camping, motorcycles, friends, and so much more.  It's important to me to not be 'the guy in the wheel chair.'  and most people get that.  Ben and Bobbi and Jeff are great examples of this.  I will need help from time to time until I have thing arranged.  Mostly I only need friends.
I also want to mention my first MealTrain delivery by friend A.S..  I'll omit their name until they say it's ok to post it.  It was delicious and appreciated.

This is official. No going back now.

Busy few days

We've done a lot in the past few days.  I was released from Baptist medical on Wednesday and we drove home.  I can say 'we' because I drove from Ozark to home.  April was so worn from the past week and she needed a break.  Terah met us at the house and cooked dinner and it was delicious.  Thursday we visited with our general doctor (L. Schemmel), ate lunch, and then visited my work.  You can't ask for better friends.  We talked for nearly 2 hours answering questions and telling stories.  The visit was both  humbling and uplifting and it only reinforces my resolve.  The day ended with Walmart and Tractor Supply.

My dad came to our house this morning and helped me clean some isles in the garage.  He also built a ramp in to my house while we were in Little Rock.  My father inspires and astounds me.  I can never express the appreciation I have for my parents.  Both are humble and selfless.  Anything I write in this blog falls too short to describe my feeling for them. I will summarize by saying 'Thank You for everything.'

Now we set at the DMV to get my official sticker.  I called the Highway Patrol on Wednesday.  They told me there were NO restriction on my driving a car with an automatic transmission.  The DMV will flag my license as 'no standards', but that's it!  I am street legal!

I feel pretty good today.  April changed my bandages, which is not a simple thing, and this resolved some unpleasant itching.   After my father and I finished the garage April and I lay on the couch and napped.  Now the DMV, then the store and back home.  Dinner with friends tonight.

First meal: Denney's

For my first meal I chose Denney's on Shackleford in Little Rock.  I used the wheel  chair and we sat in a normal both with my wheel chair next to us.  I ate the Ultimate Skillet which was yummy.  I used the public restroom and had no problems except for the tight space manuervering the wheele chair.   I call this a success!  Now we're on the road!

I'm out

I am out and in a car and headed home!  We'll stop at a Walgreens for my new meds and then eat lunch someplace.  I will sleep in my home in my bed with my wife for the first time since August 9th.  I am very excited!

It's Go-Home Day!

My stump-shrinker is on my leg.  I have my equipment; wheel chair, walker, and shower chair.  My hemoglobin count is 9.6, which is up from 8 when I arrived.  I am ready to go home! 
The Baptist Rehabilitation facility gave me a great experience.  I had many doubts about coming here.  It was highly recommended by the staff at UAMS, but I knew nothing about  the facility.  While at UAMS I felt good, but I was very sore.  I could stand and use a walker.  I dressed myself, cleaned myself, and used the bathroom by myself.  It required a lot of effort, but I could do it.
My decision to come to Baptist Rehabilitation came from many things; it was highly recommended by UAMS, everything I could already do required too much effort, my wife (April) was very worried about me coming straight home, I had was barely healed, and everything still hurt a lot.
Baptist did not disappoint me.  The facility and staff only exceeded any expectation.  While here I learned about the care and maintenance of my stump.  It gave me more oppertunity to heal and gain mobility in a safe and controlled environment.  The meals here and at UAMS were good.  Physically and emotionally I feel much better and I give cerdit for that to Baptist.  I am much more prepared to enter the world.
I am terrible with names, so there's no way I can mention everyone which helped my.  I've mentioned a few people, but everyone has been supportive, understanding, cheerful, and knowledgeable.  I have 0 complaints and I will recommend this experience to others.
The doctors visited with me this morning and I am essentially ready to go.  I have therapy scheduled for this morning, but I don't know how much I'll actually do.  I expect my papers to be finished this morning and to leave around lunch time.
Thank you to everyone at Baptist.  I am as ready as possible to go home and then for my next surgery.

Good morning, Tuesday

Monday was a real good day.  I had physical theraly in the morning and afternoon.  The AM session included time in the weight room, laps in the therapy room, stairs, and other stretches and exercises.  The afternoon session was a bit slower, but I explored  the outside for the second time since the removal.  The therapist, Matt, took me outside so I could do the 'ramp'.  This is a long wheel chair ramp which traverses about 15 vertical feet.  It has three islands/turns and I estimate its length at 200 feet. This was a real challenge and I expect to do it again today.  It did do things a little slower because Friday, Saturday, and Sunday wore me down.  I did less lower body, but did lots of upper body.
Now its Tuesday.  I have my stump-shinker from Snells.  The rep was names Michael and was a wonderful representative of their company.  He measured my legs and gave me two shrinkers.  I should wear one at all times until my prosthetic is ready.  We talked for about 30 minutes about the shrinker, prosthetics, and his experiences.  Dr. Kiser came and I reiterated my goal of walking by October 4.  Both say that is a lofty goal, but it is doable if everything goes right.  My fingers are crossed.

It was long afternoon in bed

Today was a long day. I had physical therapy from 10am to 1130am.  The first 45 minutes were done from the wheel chair using an exercise band.  It was all shoulder exercises.  The second 45 minutes were on a padded table doing hip exercises or in the walker doing laps around portions of the room.  Each day I've accomplished more than the day before.  I am a little proud of myself. 
My hip deflection was +20 degrees on Friday.  Today it was +15 degrees, which is better.  It needs to be 0 degree (straight with my back) or some negative number. I think -20 would be great.  The deflection measures how far back I can bend my leg.  The positive number means that I cannot pull my leg to straight, much less back. Everyone should lie face down on the floor and try this.  Let me know how you did so I can set a realistic expectation.
Today was so long because my leg hurt all day.  I worked really hard on Friday, Saturday and today and I paid for it.  I was so sore on all levels that I ask the nurse and duty doctor about adjusting my pain pills, which they did.  I'll go easier tomorrow because I do not want to hurt myself more.
Have a good night and a good tomorrow.

Ouch

That's all I really want to say.  "Ouch."  Physical therapy was everything I ask for.

Saturday

Spending time with Damon.

An epiphany

I had a small epiphany this morning.
I awoke about 2am and lie in bed.  My leg throbbed and burned because it was time for my pain medicine.  I adjusted my position which helped a small amount and then I paged the nurse.  While I waited I pondered about the pain and what to do about it.  I slowly realized after several minutes the my leg did hurt, but I did not.  My leg has hurt for months from the cancer, but I did not.  I've injured my body several times in the past, but I was not injured.
The epiphany is that my body is and has always been a tool which I use.  The deeper I, which you can call my soul or my ID or my spirit, is not hurt or injured at all.  I will fix my body and continue to use it for many, many years and I will accomplish many, many things.  However, when I look in the mirror I will never see a broken person because I am not injured.

Friday was a big day

Friday was my first full day at Baptist and it was a good day.  I met doctors, nurses, therapist, and more, learned the layout of my area, and got to do stuff.  It took only a few minutes for me to have a walker and wheel chair granted to me.  I now have freedom to explore the facility and take care of myself. 
There were two therapy sessions on Friday.  These included several laps around the session tables to test my endurance and some strength training in a small weight room.  The physical therapist showed me some excersises and taught me the importance of my 'stump' condition.  It is critical that I strengthen and maintain the muscles around the stump, especially my glut (butt) muscles.  A normal leg has a long femur for leverage and gravity assistance to keep your leg pointed down and alligned with your spine.  I don't have that so I must foucus on those exercise.  The straightness my leg will directly relate to my ability to use a prostetic.  I must thank Mason at the Fayetteville Athletic Center.  I attended his Body Pump class for the year before this started.  It prepared me both physically and mentally for the excersise which is now required.
Saturday and Sunday are semi-off days for the facility.  Most patients rest and the staff get to take days off.   I missed the weeks normal activites since I arrived on Thursday evening.  I am assured by the staff that these days will not be lost.  I still have two sessions scheduled for today and I can explorer the facility, which I will count as excersise.  They've not said this, but I need to drop about 25 pounds from my torso.  That would make things much easier.
What's coming.  Dr. Kiser is the chief doctor here.  I've spoken to him each day and I explained my personal goals and he is working with me to achieve them.  If all goes well then I expect to get a stump-shrinker early next week and then dischareged Tuesday or Wednesday.  The stump-shrinker is a fancy spandex sock to cover my stump.  It helps with swelling and begins the forming process for the furture prostetic.  It is an important next step.
I started my laundry earlier and now I must check it.  Then I'll have a clean shirt and I begin my exploration.
More later.

Day 1 at Rehab

This is P.J.  She is the Nursing Supervisor.  She came in to check and make sure he is doing ok and that everyone is helping him.  She also wanted to make sure that there was nothing he needed.  She is a very very nice lady  & she was surprised that we have a 21 year old daughter!! I told Damon we should take her home!!!  More to come.

Now at Baptist

I am now at the Baptist Rehabilitation facility.  I've seen the lobby, an elevator, a hallway, and my room.  It's an older building, but the equipment appears up-to-date.  I've visited with two doctors, several nurses, and several others.  Everyone is nice.
The hardest part so far is the new rules.  I had a walker and free mobility at UAMS.  Here I must page the nurse and be wheeled on a hand made PVC toilet to go to the bathroom.  This is because I've not been officially evaluated by the physical therapist, which is in the morning.  It is certainly not convenient, but rules are rules.  I feel a little sorry for the nurses, because they can see my mobility, but rules are rules.  Darn.
Sometime after breakfast is my first physical therapy and ocupational therapy.  Part of this is the evaluation.  Then lunch and more therapy.  I do not know what to expect.

Here is a sad/funny story.  I know some of you can relate.  I am wheeled in to the front lobby where I sign my admitance papers.  Halfway through I ask the young woman "how much is this?".  She responds with "it's filed with your insurance."   "Ok, but how much does this cost?"  "I don't know.  I'll get someone."  She leaves the area and a minute later she returns and says someone else will help me with an estimate.  Another woman appears with a hand written note which explains my insurance benefits, such as deductible, out of pocket, etc.  I say "what's this?"  She says "this is your estimate."  "No, these are my benefits"  "so, Mr. Brewer, what do you want to know? "  "I want to know how much this place costs."  "Oh, hold on."  Then she leaves and I wait a minute more.  Now a third woman (in a suit) appears "How may I help you, Mr. Brewer?"  "I want to know how much this place costs."  "It depends of what happens and it does not include the doctors." "I get that. How much is this per day?"  "It's $1500 per day but you have good insurance."  "Thank you."  The conversation continued about some details, but this is essentially the end.
I see this as the major problem with modern health care.  Hospitals, doctors, suppliers, etc can not give you a straight answer about the costs.  Everything is tossed into a black box and then you get what you get.  I had this same experience in Springdale about a sleep study and in Fayetteville about an MRI.

Now it's bed time.  Thank you for reading.  More tomorrow.

Going to Baptist

I am told that I am transferring to Baptist Medical for a few days of rehabilitation.  Someone should get me at 2:15.   My next step is almost here.

This is my first morning to quietly set and really think about what's next and it's a little scarey.  I have no doubts about succeeding and returning to the real world.  I have no doubts about my family and friends and co-workers.  I have no doubts about my ability to accomplish what I need.  All that said I am standing at the base of a large mountain which must be climbed.  I say large because I know that I am not the first to climb the mountain.  It's not a huge mountain or an impassable mountain range or a raging shark filled ocean (April loves Shark Week). Thousands of people have already crossed to the other side and left well marked paths to follow and I have more support than anyone could need.  People are in front of me offering a hand.  People are behind me with encouraging words.  People are beneeth me lifting me up and removing obstacles.  I am ready for this challenge and I will continue to bring all of you with me.

More to come after I am situated at the new facility. 

Day 3

Morning!!  Damon is doing GREAT!!!!!  As you can see, he has been enjoying time with our Great-neice, Alyssa Trinity Crosswhite.  Hopefully he will be transferred to Baptist Hospital today.  Insurance has given the go ahead for it.  I will update a little bit later!  Thanks for being such great friends and caring so much about Damon!!!

Another good day

It's now Wednesday.  56 hours ago I had two legs and two knees and two feet.  Now I have 1 of each.  It is an incredibly strange sensation to litterally know that I have two legs, but still know that I don't.  I can still feel it hanging there and if my eyes are closed I believe I can reach over and touch it.  It is more bizarre than I can describe, but each day is a little easier.  Thanks to the internet I read of techniques for aleviating the sensations and the doctors are giving some medicine which is supposed to help. 
Each day is better than the one before.   I can now get out of bed on my own.  As I write this I am up in a seated position without a back rest.  I recently left the bed and went to the rest room completely independantly.  No one told me that I can't do that so I did it.
Here's is what's coming.  The hospital and insurence are negotaiting about tomorrow.  I may be transferred to Baptist Medical for a few days of rehabilitation.  I'm told they have offices and a gas station and a grocery store for people to test their ability.  It's still a hospital type facility so I have a room and nurses, but it's all about the rehab.  I'm looking forward to it a little.  I expect to be there 3-4 days if everything is approved.
The next big thing is August 25.  The thoracic surgeon is scheduled to remove the spot on my lung on August 25.  This means I go to rehab until Sunday or Monday or Tuesday then I go home.  Then I return to Little Rock the following Sunday for another early Monday surgery.  That will keep me in UAMS for another 3-4, but no rehab is expected.  The surgeon expects it to be done with cameras and small holes.  I should OK as long as they do not open me because I can keep my upper body strength, which is important when you are missing a leg. 
The next thing is removing the staples from my leg.  That is about 3 weeks from the amputation which is early September.  That can be done in NW Arkansas with local doctors.
September will also include discussions about my new leg.
That's all I have for now.  I cannot share enough 'thank you's for everyone around me.
I will see you soon.  :)

A Good Day

We got to take him outside!!

Day 2

He had a bath and a change of clothes and the nurse refreshed the bed. More to follow

End of day 1

I'm calling this the end of day 1.  Most of the day was in bed but I did get up twice.  This was a very full day.
Eneryone at the hospital is wonderful and the food is good.  I am looking forward to day 2 and I  certainly look forward to normal.  I miss normal.

I can't lie

This really sucks. 
I said in an earlier message that you should avoid cancer at all cost.  I'll stick with that, but add that you should avoid amputations too.  The people here say I'm doing great, but it is not without tremendous effort.  Luckily I am 'young' and 'healthy', but it still really sucks.
The PT (physical therapy) folks said I did much better than expected.  Having a beautiful woman to go kiss was more than a little inspiration  ;).  I used a walker to travel about 15ft and back.  Later I went to the restroom and back. 
The original leg pain is gone, which is good.  However this new pain can not be described.  They are encouraging me to do an in-house rehab at Baptist medical because I am a great candidate, but I don't really know what means.  There is a lot to decide before I commit to that.
I'll try to post again before sleepy time.
I am surrounded by very special people here, in NW Arkansas, and all around the nation.  Thank You, All!!

Hello, World. I'm baaaaaack

It's Tuesday and I have my toys back.  I'm still tied to the bed with tubes, but I can move myself around and eat whatever I want.  Terah, April, and Trish brought me some Chick-fil-a, which was yuuuuuumy.  The food here is pretty good, but nothing beats outside food.
My right leg is gone.  Yes, I have pictures.  Dr. Montgomery said he was able to keep more than he expexted, but it's still not much.
This is as painful as you can imagine, but my spirits are good.  I expect to be on my feet (foot) later today.
Thank you for the notes and flowers.
Db

A BIG THANKS

Well, I just waned to take a minute to tell everyone how much I appreciate everything you have said, offered to do and all of the support that you have given us during this time. I have always told Damon what a special person he is and how many friends that he has.  It is during times like this that a person or family finds out just who their friends really are.

I can honestly say that I am overwhelmed with the love and support that you all have shown Damon and even the support you have given me.  I don't think that there will ever be anything that we could actually do or say to you all that would be able to express our thanks.

I know that the next several months of our lives are going to be a challenge, especially for Damon. And I know that you all are going to be right there with us to help us through it.  All I can say is, I truly and honestly thank  you all from the bottom of my heart.  -April

And he is up!!!!!

Funny!!!!!

Physical therapist are here. We have been playing Pictionary. They saw through the window that we were writing stuff down. When they came they were afraid Damon was deaf and no one told them!!! LMAO!!!

SMILE!!

Damon's recovery

Damon is doing well today. Very awake and in very good spirits, although since you know him, that is no surprise.   He has enjoyed the flowers and says Thanks!! No mention of going home so it will probably be Friday before we are home. Dr . Montgomery is looking into physical therapy rehab for him Hopefully one at home.  I will update more later today after he has started physical therapy.  We miss you all!!

Room F906

Damon is at UAMS in Room F906. ge is in pain but doing well.  I will update you tomorrow to let you know how he is doing. Thanks for caring so much about Damon and us. It means the world to us!!

Recovery

Damon has now been sent to recovery. The surgery took twice as long due to the tumor being fed by more blood vessels than expected.   He had more blood loss than expected but they gave him several units of blood.  He will be in recovery for several hours depending on his pain level and lucidity.  They were unable to do the block for pain. So Damon may have more physical pain and phantom pain.  We will have to wait and see. No day to go home yet. I expect Wednesday or Thursday.
I want to thank my family and friends for helping me through this. Latrisha, Houston, Joshua and Baby Alyssa: You guys have no idea what it means to Damon, Terah and I that your drove up to be with us. We love you dearly!!! Courtney and Jeff: Thanks for being as good of a friend to me as you are to Damon and thanks for dinner!!

Still working.

Was just told that they are still working  but everything is going well.

Surgery Begins

He went back to surgery about 9:30. Reconstruction is not an option so the surgery is an amputation, probably at the upper thigh. Should take 1 to 1.5 hours according to Dr. Montgomery.  Chest surgery could be as  early as next week. They are giving him a block at the top of the thigh to help with post-op and phantom pain. Dr . Montgomery said he didn't think he would have a prosthetic in time to walk Terah down the isle at her wedding. No dry eyes at that point. I will update when he is out of surgery.  Thanks guys!!

Getting prepped!

They just took Damon back to pre-op.  He is in great spirits and is looking forward to getting this done and behind him.  Me, on the other hand, NOT!!!

T -1 hours

It is Monday morning. I will be checked in to the hospital in about 1 hour.  In about 3 hours I will be deep under anethesia.  In about 6 hours I will finally know what happens.  The past 6 months will culminate in something.  Perhaps a long complicated tumor removal.  Perhaps a full amputation.  Perhaps something from a SciFi movie.  I am as ready as possible.
I am powering off now.  More to come.  I shall return.

Tomorrow is the day

We're at the hotel and getting ready for dinner.  We go to the hospital at 6am.  I plan to power off my phone and tablet as we leave so I'll be incomicado until late Monday or Tuesday.  My stupendous, spectacular, fun loving, completely cherished wife and daughter will update the blog with what happens.  You can email about.damons.leg@gmail.com with specific questions.

Tick-tock-tick-tock goes the clock.  T - 12 hours and 40 minutes.

T - 19 hours

We're on the road to Little Rock.  It was a long night and a hectic morning.  We'll meet Terah and Patrick in Little Rock, eat dinner, relax if possible, and count the minutes.

I want to give a shout-out to April's friends.  Yesterday they went to lunch and then a casino.  She had a good time and a smile when she got home.  Thank you.

A History of Traveling

Many people ask me “Damon, how do you stay so calm about all this?”  The answer is simple.  Life is full of turmoil.  I learned many years ago to take everything with a grain of salt.  It can always be better.  It can always be worse.  Everything which will ever happen to anyone is somewhere in the middle of the road.  My goal is to not hit a curb; as least not too hard.

Traveling is a grand example.  It has never been a lucky proposition for me.  I have traveled many times to many places.  Most (as in more than 51%) have been seamless events.  Many have been borderline disasters.

Many years ago my wife and I traveled to Las Vegas.  At the time we had a cat and two dogs and lived in the country.  The day before we were to leave my daughter’s cat zipped out the door and disappeared in to the forest.  I stayed up all night wandering around the trees searching for that cat.  This was when we lived on my dad’s land so if you know my dad you can imagine the experience.  On another occasion my wife’s dog disappeared.  Both dogs left and only one came back.  We’re pretty sure that the older one ditched the puppy.  Both animals eventually reappeared, but holy he-double chopsticks that hampered the fun of those trips.

Last winter my father-in-law was ill and we had to drive to Houston, Texas.  This was in the winter and we were covered with snow.  That’s not too bad, but then it gets exciting.  April and I are lying in bed trying to sleep before we leave early the next morning.  We’re warm in bed.  The lights are out and about to doze.  Drip.  Drip.  Drip.  Water begins coming through the bedroom ceiling.  Drip-drip becomes a stream.  Then it begins streaming from multiple places in the bedroom and the sun room.  Luckily I have great parents and then handle the clean-up crew while we were gone.

My worst trip ever was in August of 2011.   I arrive in Washington, DC and realize that I left a vital component of my CPAP machine at home.  I can handle that.  I get to the car rental and they hose the reservation which locks up my credit card.  I get the car with a debit card, but that took some wrangling.  Now my hotel reservation is hosed because of the credit card issue.  I pay for one night with cash until my card is resolved, but that was almost all my cash.   I go to Lowes in an attempt to cobble together enough apprentice for my CPAP, but I only succeed in inflating myself with about 40psi, which was not pleasant after the morning I had.  I go to class the next day, which was a great class and guess what happens.  A friggin’ Earth Quake.  Yes, I was in Washington DC of August of 2011 when the big earth quake hit the area.  To make it better I am actually South of Washington even closer to the epicenter.  They evacuate the building and that’s the end of class for the day.  I go to the hotel and I plan to meet a wonderful friend for a quick visit.  I get to the Mall and of course it’s raining.  I buy a jacket at the Smithsonian and my luck has turned because it’s on sale.  Why is it on sale?  Because the somehow one sleeve is like a Chinese finger trap!  The inside is rotated 360 degrees inside the outside if you can imagine that.  I have a wonderful visit with my friend.  We walk about 5 miles in the rain, but it was wonderful walk.   I’ll skip to leaving.  I drive back to Ronald Regan National Airport, which is hard to find, and I check my bags because I deserve a little easy time.  The line is huge I am wearing my favorite traveling cargo pants.  I do something, I forget what, and I rip the seam which holds my zipper in place.  I checked by bag at the gate and therefore  I have nothing.  Awesome.  I spend the next 5 hours holding a laptop in front of me.

I have other stories, but I think lays the framework for my current attitude toward life.

Why does all this come up?  I went down stairs to check some laundry for the trip tomorrow.  I hear drip, drip, drip, which I should NOT be hearing.  I go around the corner and I find water all over the floor.  The drip-pan for the AC is overflowing all over the floor.  Ya.  I am preparing for a nearly week long stay in the hospital for a cancer removal/leg amputation and my AC decides to flood the corner of my laundry room.  I use the shop-vac to clean up the water, clean out the drain and then I setup the dehumidifier.  I called my dad and he’ll watch it for the next few days.

As I said earlier.  “It can always be better.  It can always be worse.  Everything which will ever happen to anyone is somewhere in the middle of the road.  My goal is to not hit a curb; as least not too hard.”