The End

Well it's been a couple of months since I posted.  Gator passed away at home on July 12, 2010.  We had a celebration of life for him on his birthday, August 7th.....it was beautiful.  Go to http://www.gatorsjules.com/ to view the Tributes in pictures that our friend Rich March put together for the celebration of life and to listen to the songs we played. You can also post your favorite memory of Gator on this site.....Thank you to all our friends and family, the love and support has been unbelievable. 

  Lot's of Love.......Julie

Friends

We have more friends coming over tomorrow.  Hillbilly, Kim, Kat, Chirp, Rocky, Kelly, Kevin and I'm not sure who else.  Should be fun though.  Gator is not sure how he'll be but hopefully it will be sunny out and he'll be up to hanging out in the sun!  We requested a new hospice nurse.  The old nurse and I were butting heads alot, Gator even said he didn't want to spend his last minutes on this earth with that woman and told me not to call her......anyway the new one came out yesterday.  She seems like an airhead but we'll see how she works out.  I know what you're all thinking but it is NOT my fault!  I'm not that hard to get along with.....  ;)  More details later...As soon as I can get to a computer with high speed I'll be able to straighten out this 2nd blog.  I'm keeping a journal on my laptop and I'll transfer it online just as soon as I can.  I don't get out much.

Love ...

Eating!

Gator is doing pretty well.  He's eating and drinking and making good conversation.  His biggest problem right now (he says) is that his legs wont work.  He can't even stand up on his own and that frustrates the heck out of him.  We're having a little BBQ this Saturday with our friends Dan, Trudy, and Chirp.  We're going to move my stuffed chair outside and have Gator sit in it.  This will be the first time he's gone outside since we came home from the hospital.  We're really looking forward to it!  Love to all..

Last goodbyes?

Well Gator's kids came from Oregon to say their goodbyes to Gator....stayed for about an hour and then talked to him for about 10 minutes then left crying and saying they were done.  That was last week some time I think.  The days are all running together.  Anyway, today Gator is sitting up eating, drinking and using the portable comode (with some help getting to it!) by himself!  He's a fighter and apparently not quite ready to leave.  He looks good and says he feels good too.  He's taking the Morphine ER 15 mg twice a day and maybe once  during the night he'll use the under the tongue morphine for breakthrough pain.  He's very alert and talking about playing his keyboards and trying to work his leg muscles more so he can stand up.  I see a little swelling around his right eye and his eye is watery....not sure what that is.  Roy and Kelly came to visit from Oregon yesterday, Carol and Roger were here last week.  Miss. Kitty came and stayed with us for a few hours on Saturday...that was fun! Booger and Deb are pretty regular visitors and so are Rocky and Chirp.  Thank goodness for Dan and Trudy, especially Trudy.  She calls every day to see if we need anything and has been picking up new scripts for Gator just about every day!  We love you guys....Thank you so much!    I think I'll start fixing this blog up like the first blog....do it on the laptop first and then just upload it all.  It's much easier to read that way. That's all for now I will update  with pics soon.....if I didn't have dial-up it would be done, it just takes so long! :)

Hospice

Friday, May 7th Gator woke up with a bad pain in his back.  He told me he felt like he was sliding into home plate and it was time to call hospice.  He couldn't get up out of bed bacause his back hurt so bad so I had to call 911 and they took him to St. Petes in Oly.  When we first got there the ER Dr. said that he couldn't get morphine because he hadn't been on a regular dose of Oxycodone yet and they had to do that first.  I told him I was sure that Gator's oncologist said that whenever he was ready to go to morphine just let him no but the Dr. wouldn't budge.  Then after doping Gator up on diladid and oxycodone (not to mention the hydrocodone and Lorazapan he took at home!) they were going to release him!  I couldn't believe it.  They brought in a wheel chair to take him out to our van in....even though he was so doped up we couldn't get him to respond!  I told the nurse that there was no way we could take him home like that and that I wanted them to admit him .....so they eventually did.  Hospice couldn't come until Monday so they said they would keep him until then.  The attending Doctor came in to talk to me and said that he was going to start Gator on morphine!  I about lost it.  Not that I was against it, just that the other doctor was so against it!  Anyway, I'll write more about the stay in the hospital later......we are home now and Gator is really out of it.  He doesn't make alot of sense.  I'm pretty sure it's the cancer in his brain because he get's really bad sometimes even when he hasn't had much pain meds.  He was also saying some strange things before we even went in the hospital and at that point he was only taking 2 hydrocodones in the morning and two at night.  He can't get out of bed at all now......his legs don't want to hold him up.  It looks to me like its from whats going on in his brain and not pain meds.  It's very sad...breaking my heart.  He tries to get up sometimes and throws the covers back like he's going to jump up and then realizes he can't.  He just lays there mumbleing to somebody and sometimes motions with his hands like he's picking up things or reaching for the sky.  I have him in a hospital bed in front of our sliding glass doors where he can look outside.  I moved the TV to the foot of his bed and I sleep in a chair by his bed.  We've had a lot of visitors, hospice comes in for about an hour to check on him but I'm not leaving him with some stranger.  He still cracks jokes every once in a while....usually he just seems so sad and confused.  I miss my Gator man so much.......STUPID CANCER
I'll write more later

Vocal surgery cancelled

We got to The Homestead hotel at about 5:30.....they gave us a king room, totally cool, but we had to go to bed early because we were getting up at 4am.  Gator coughed all night and when we woke up at 4am his ribcage was hurting from when he fell getting out of the van Saturday night, probably from coughing so much too.  Anyway, we called the hospital and they told us to come in anyway.  They gave him an x-ray, no broken bones, so they sent him home and said they would try to reschedule the surgery for about mid-June.  What a bummer!  They also said his lungs didn't look any worse than last week so no antibiotics.  Long trip for nothing......Oh well, we're home now!  ;)

Green For Gator

Dan Whyms and Rock Island Line put on an awesome show for us at Big Tony's in Centralia on May 1rst.  It was a great turnout and they made a bunch of money for us.  Gator made it through the whole night!  Alot of our friends were there....even though there were so many that couldn't because of the very short notice!  What an awesome night....The band did the show for free and I think everyone there were amazed by their talent.  As soon as the band started playing everyone stopped talking and all eyes were on the band.  When Dan came on stage and started singing you could see cell phones come out all over the bar....people were calling friends telling them "you're not gonna believe this!"  They were also video taping and taking pics.  These guys put on such a great show, we can't thank them enough for doing this for us!  Our friend Patti's mom (Bonnie) went to see them at the Emerald Queen Casino last month and so when she came to the show on Saturday I promised her a hug from the big guy himself and he very happily obliged.  She can't see very well, I believe she is legally blind so when he hugged her she didn't realize who it was until he said "how you doin' darlin' "  It was sweet!  She just said "oooooohhhhhhh!  Oooooooohhhh!" and then told him she's been telling her kids for years that they can't keep up with her"  She's so funny!  Love you mama.... 

Today is Monday, May 3rd and we are heading for Seattle.  Robby, my son is going to stay here at the house while we're gone.  Gator is having his surgery in the morning......I'll post again when we get home.

Karyn & Kevin visit

April 17- 22
Karyn and Kevin (Gator's kids) came for a visit.  Karyn and I took Gator for a walk in the wheel chair over to Rocky and Chirps while Kevin stayed at the house (he's a sports freak!) and watched a basketball game. They stayed with us Fri and Sat night and then Kevin left on Sunday.  It was fun having them.   Gator told them he wasn't up to a lot of company but they all came anyway.  He was looking foreward to a visit from them and their Uncle Mike and then their Uncle Roger too.  Then we find out that it will be Karyn, Kevin, Uncle Mike, Uncle Roger, Aunt Carol, Aunt Bobby and Gator's Ex... Dyanna. They all came over on Sunday.  It was a nice visit but he was very overwelmed.  He enjoyed flying on his flight simulator with his son, Uncle Roger, and Uncle Mike. When everyone was in the livingroom standing around him he was feeling very uncomfortable.  He was pretty worn out by the time they all left....but it was nice that Karyn stayed with us for a few more days.

Our friends Kevin & Kelly, from Rounders, loaned us their Blazer for the trip to Seattle because the brakes on our van were grinding really bad.  They even filled the tank for us and told us not to worry about it! You can't find better people than those two!

(I feel bad about writing this part but I really need to say it..)
 Karyn, you really upset both of us at the oncologists office when after we were done with the appointment you pushed Dr. Grim back into the room and closed the door behind you.  I had already talked to you and told you that your dad & I made a promise to each other that there would be no meetings with the onc behind closed doors, we are a team...and we were both very upset that you did that.  However, we do understand that all of our emotions are pretty uncontrolable at times with what we are all going through.  I want you to know that I don't buy for one second that Dr. Grim called you in to tell you to talk us in to getting hospice because he had already talked to us about it and he wouldn't do that.  What happened shouldn't have happened and we won't be inviting you on any more trips to Seattle.  I'm not saying that if you call and want to go with us that we would say no, just that we wont be inviting you anymore.  :)  You know your dad love's you VERY much, and so do I.
Gator got a swallow test done...everything is working good.  Then he also had his pre-op day where he had to check off a bunch of deptartments as he was seen by them.  Like, doctor, nurse, anesteisiologist (wow, don't know how to spell that LOL) It was a long day! He's scheduled for surgery to fix his vocal chord on May 4th.
When we were getting ready to leave the hospital, Karyn was putting the wheel chair in the back of the Blazer when the hatch fell and smashed her finger!  It smashed the pinky ring her kids had bought her for Christmas....she was very upset about that.  She ran back in to the VA ER and asked if they would cut the ring off because her finger was swelling around it.  They told her she would have to be admitted so she left.  We ended up going to the Husky truck shop across the street from our motel and having "Dirk" cut it off for her.  Just makin' freakin' memories......LOL
When we got back to the hospital room, Our friend Kelly texted us to see how things were going.  She could tell we were feeling really down so she sent us a pic of our van.  We had left it at Rounders when they loaned us their rig.  One of the customers at Rounders, Cari, fixed the brakes on our van and did an oil change! I think he was the one that detailed it too!  Our boss, Dan Whyms, put two new tires on it and Kevin & Kelly put new wipers on and filled it with gas!  They also put in tranny fluid and some kind of fuel performance stuff too.  It was supposed to be a suprise but when Kelly heard how low we were feeling she wanted to cheer us up and boy howdie did she!  LOL  Not only that but Dan Whyms (the one and only true Johnny Cash tribute artist!) wants to do a benefit show for us on May 1st and told us to find a place...  Wow, we love you guys...Thank you....Thank you....Thank you!  (I will post pic's from this trip ASAP)

"Beamer" and Easter

Gator has been feeling a little bit better.  I think it's helped alot that we have had a lot of company this past week.  A couple of times he seemed like his old self....laughing and giving me a hard time. 
Finally a bit of good news!  Our Beamer is running!  Hillbilly, Kim and Kat came over (Billy Ray, from Oregon came too) and in about 45 minutes Hillbilly had our car purring like a kitten.  Gator got a little tired so Billy Ray drove him back to the house and when the car was running I called Gator, held the phone up to the engine and asked him "can you hear it?"..  He said "No" .. and I said " I know!  isn't that great!!! LOL"
It sounds sooo good!  Now all we have to do is find someone to replace the windsheild and passenger window, straighten the ragtop frame a little, and we're on the road again.  We have to hurry.....our work van is falling apart....the brakes are grinding and the transmission is screwed up.  I want to get it up and running by the time warm weather hits.....We really want (NEED!) to take a road trip!   ;)  When Hillbilly, Kat and Kim were done working on Beamer they came over to our house and brought muchies with them.  Hillbilly didn't want to bring pizza....instead he said he wanted to bring something "healthy" so he brought a cheese and crackers tray with pepperoni! The only thing missing was the Miller... LOL  Gator loved it.  They also brought banana's, grapes, and cupcakes!  It was a wet, nasty day out and Hillbilly brought his weed eater and did some yard work while he was there!  Kat and Kim fixed our patio up....weeding and sweeping.  Kitty said it was so we could come out and sit in the sun when warm weather gets here.  We have the most unbelievable friends!  We love you guys....Thank you so much for being there. 

We went to the Bucoda church for the Easter program. Kat, Peanut, and our grandbabies sang in the program.  Kat's grandson, Conrad sang "I Will Rise" and dedicated it to his mom (Kat's daughter) who died last year. It was the last song she sang before she died. It was very moving.  Kat introduced us to a lady named Beverly who has been fighting her own battle with cancer. We later found out that she is our friend Frank Andersons daughter.  She had lung cancer that spread to her breast and brain.  It sounds like she's winning her battle!  Paster Becker is also fighting Prostate cancer.  We talked with him a bit too. He's just finishing up radiation.  It really helps to get together with others who are going through some of the same things we are because for a while it seemed like life was just going on around us and ours had stopped.  The cancer takes hold and controls everything, you have to plan everything around doctors visits and treatments and the way you feel and it makes a person feel very alone, like no one else can possibly understand how you feel.  Then you talk to people going through it and it makes you stronger and more determined to fight! 

On Tuesday, March 23rd, after finding a blood clot in Gator's lung and 8hrs of waiting and torture at Centralia hospital (scroll down for the rest of the story!)...they sent Gator to Seattle VA in an ambulance and  Deb Barker drove me to Seattle in her car.  She packed a bag and said she would stay as long as we needed her to and bring us home!  Right after they put Gator in his room a team of very young looking Doctors came to his bedside and drilled into our heads that using the paddles and chest compressions and tubes down the throat were a horrible thing and said that we need to make our decision on what Gator wants done.  They must have harped on that for about 20minutes...then 2 of them called me out into the hall to go over it all with me again!  That first night they woke us up every 5 minutes I think to take blood from Gator to monitor the blood thinner.  He was so bruised and looked like a pin-cushion.  Well, I'm not going to go into any more details.  Deb and I spent our time reading and drawing pictures.  Weds. Deb and I walked down to the Cafeteria in the basement to have dinner but everything was locked up.  We didn't realize that the doors we had just come through were going to lock us out!  One of the hospital staff saw us coming towards the door and new we wanted back in and just let the doors shut on us!  What is wrong with people???!  We had to walk completley around the hospital outside and up the hill to get back in!  We were really glad it wasn't raining.  Dr. Grim couldn't make it in to see us but called and talked with us for about 20 min.  and Ellen Nason came in (Dr. Grims right hand!) to visit.  Deb brought shampoo and cream rinse and other essentials and so we were able to clean up a little, that sure felt good.
Ellen Nason came in a second time to see Gator, on Thursday.  Dr. Grim and Ellen do everything they can for Gator.  Dr. Grim sent a Hemotologist to see Gator and this doctor said that he thought we could safely give Gator this new blood thinner and said there shouldn't be any bleeding of the brain. Later, the first really young looking doctor who said that there would probably be bleeding and no way to treat it came in to say that she had researched it online and that is where she had gotten her info.  Sounded to me like she was trying to make excuses for what she had told us.  Well anyway, I'll just say that on thursday, we ended up being sent home with blood thinner that I have to inject into his belly every day. Not something that I'm real excited about doing but whatever it takes to keep him home.  He is taking Oxycodone (5mg) every 8-10hrs now for pain.

The ambulance

We were at the hospital for a total of 8 hours, 7 hours we spent just waiting for an ambulance to become available!  Finally when they got there it ended up being the same Medics that took care of me when I wrecked Beamer!  Finally, I could feel like Gator was going to be taken care of!  :)  Our friend Deb Barker offered to drive up to Seattle with me.  Thank God!  I don't know how I would have made it up there without her. 

Tests

Our new nurse, Kori, was very efficient and very sweet.  She did everything she could do to make sure we were comfortable. The doctor (Sunderland?) examined Gator for about a minute and then called me out of the room to talk.  He asked me what our plans were for the "end of life"...I asked "what are you saying" and he said "well, the way his skin is all mottled (blotchy purple) that's a sign that it's close to the end for him.  Gator has had that blotchy purple skin for years, any time he gets short on Oxygen but ok....he's the doctor.  He did a quick unltrasound with the portable and said Gator's gall bladder is "sick" swollen, and he saw a little bit of sludge in there.  Then Gator gets a CT scan and they find a blood clot on his lung!  The doctor pokes his head in the curtain and says;  "he has a clot on his lung...we're going to give him a shot of a blood thinner" and then he was gone.  A few minutes later the nurse came in and gave him the shot.  After about 20 minutes (during this time nurse Bonnie's supervisor came in to find out what happened, gave me a cup of coffee and left!) I finally saw the doctor running by so I asked him if he would please call Gator's Oncologist in Seattle and tell him what was going on.  I gave him the numbers to try and he left. He came back in a little bit and said "unforturnately the blood thinner we gave him will cause bleeding on the brain and there is nothing we can do to treat that if it happens".  I asked the doctor why they gave him this shot and didn't tell us bleeding on the brain was a possibility?  He made the sign of the cross on his chest and looked up at the ceiling like he was praying!  Then he said that our Dr. in Seattle wanted them to send Gator to the Seattle VA in an ambulance.....I'll bet Dr. Grim could tell this Dr. had problems after talking to him....we'll never know though because he would never talk bad about another doctor....

Nurse from hell

We took Gator in to Centralia Hospital on Tues. the 23rd.  First they wheeled him into a room that had blood all over the floor and on the counters!  I started wiping the counters with Alcohol wipes and then a nurse came in and mopped the floor.  Then we nurse "Bonnie"  the evil nurse from hell.  She asked me; "what kind of  IV pain medication does he usually get?" and I said he doesn't usually get IV pain medication.  She raised her voice and said; " I just don't want him laying there in pain!"  I told her well I don't either but how can I tell you what kind of  IV pain medication to give him when he hasn't ever had any? She didn't say anything but while she hooked up his IV she coughed into her gloveless hand!  After what seemed like a very long time to me, I asked her if he was going to get something for the pain and she raised her voice again and said; "That's not up to me, you'll have to talk to the doctor!"  What a witch with a capital "B"!!  Well I noticed that Gator was laying flat on his back with his legs hanging over the foot of the bed and really stuggleing to breathe, so I reached under his armpits and pulled him up on the bed (like I always do!) and she yelled at me to get away from him, I'll call someone to do that!  I told her he needed help now so I just finished what I was doing and then she said "Do you want to leave this room?".  I lost it!  I told her no, you are leaving I don't want you to have anything to do with my husbands care!  Then I heard Gator's shaky voice saying "hey now that's enough"  so I turned my back on that nurse and just worked on his medication list.  She flew by me and said "I'll get my supervisor"  I said; "Thank you!" ...
   They put us into another room with a new nurse and when I told one of the other nurses what had happened she said; "she's usually very good, but she's been throwing up and coughing for days, the only reason she came in today is because we are so short handed!"  She was sick and wasn't wearing a mask or even gloves?  I'm just blown away...

Chest Pain

I spoke too soon!  I hate it when that happens.  On March 8th Gator had pains in his chest and said they were "pleursy".  On March 9th he woke up with the same pain in his chest.  It wasn't until we got to the Oncologist appointment that day, he that he said the pain radiated in his jaw and neck!  He says he didn't tell me because he knew I would flip out and think it was his heart.  WELL?!?!  Dr. Grim said that even though Gator used to have an average pulse of 60-70.....the 95-110 pulse that he's been having lately is a "high normal" and nothing to worry about given all the chemo and radiation and meds Gator has had.  Not very comforting, but ok we trust this Dr.......now how do I tell if it is his heart?  :{   Last night at the show Gator said that he had pain going across the upper part of his chest and he said he thinks things are changing.....He WONT go in!  We check his blood pressure a couple of times a day.  It runs right about 130/90 with 90-110 pulse!  Except for the past couple of days it has been around 100/60 with 95 pulse.  I wrote down all his sugar readings and BP's and Pulses for a week and we took them in to Dr. Grim.  He wasn't concerned, but it's just buggin' me ..... it doesn't feel right!  Gator also said that it scares him the way Dr. Grim and Ellen are always trying to push pain pills on him.  He's worried that the Dr. is trying to tell him something like "here comes the pain!"........  He goes in to OTO on Thursday (4 days!) to check his vocal chord ....

Still on break...

  Gator is feeling pretty good.....still spends alot of time sitting on the couch watching TV but he doesn't really want to do much of anything.  We did go to Rounders this Sat. with Rocky, Chirp, Daryll, Darlene, Booger, Deb, and Bill.  We had a really good time.  Great show...as usual!  He's eating very well and gaining a little weight.  He only lost about 15lbs over the past couple of months.  He looks good and is feeling much better.  We go to Seattle to see the oncologist in two days..... no new symptoms so probably won't start any new treatments right now.

Break from Chemo

    Gator got his last chemo treatment on Jan. 25th.  They would have given him up to 6 treatments of this chemo before taking a break ( he got 6 the first time and 5 this time) but he's just feeling too run down.  On Feb. 1rst we got the results of the CT scan.  The cancer shrunk up a little bit more but not enough for Gator to get another treatment feeling as exhausted as he does.  The Dr. gave him a walker with a seat so that he can get out and get some excersise and start building his strength back up. He wants him to start taking his vitamins and eating, exercising and doing more FUN things (Dr.'s orders!  LOL)  and then come back and talk to him in 6wks.  If there are no new symptoms in 6wks we'll go back in another 6wks and get another CT scan to see what the cancer is doing.  If it has grown, he will probably start the same chemo he just got done with....if Gator wants to.  It's all up to him and how he feels.  He's really happy to be off the chemo for awhile and really looking forward to building up some strength!  We got the Beemer parked in our friend Dan and Trudy's garage here in Oakville now so we can slowly start getting her cleaned up and maybe back on the road.  I'll be painting portraits of people on their bikes to try to cover some of the costs so if you know anyone that would like one they're $50 each....  Love to all

Rolled Beamer!

Gator is very short of breath these days.  He still looks pretty good, hasn't really lost alot of weight (10lbs maybe)..biggest problem is the shortness of breath.  Not exactly sure what's causing it.  Could be the cancer in the right lung growing but we don't know, and won't know until the beginning of Feb. when he get's his next CT scan.  I keep asking him if he want's to call the Dr. but he says no.  His spirits are pretty good...God bless him!  He's a fighter.... 

We've both been extreemly depressed this past week though, since I rolled our beautiful BEAMER! 

It says 2004 but it's 2010, that date stamp on my camera is set wrong again!

I'm just sick about wrecking our baby.  I hydraplaned across I-5, slid backwards down the bank and flipped upside down into a ditch full of water!  I know I should just be thankful that I'm ok, but we were really looking forward to at least one more trip in warm weather with the top down.  Maybe once I get over all the soreness it will get a little easier not to feel so down.  We'll just keep pluggin' along.  2009 was such a difficult year with Gator's cancer and the deaths of family members and friends and people hurt in motorcycle crashes and friends fighting heart disease.  Now 2010 has not started out very well for us either!  On New Years Day I fell off the porch and hurt my lower back pretty bad, I had to go to the ER (and no, I don't drink!).  Then one week later I rolled the Beamer....We all need to start praying really hard for happier times!!!    :)

Love you all...Happy New Year!

Chirp, Rocky and Gator and I ..New Years Eve 2010

At Chirp & Rocky's

                  

(From left) Roy, Gator, Billy Ray, Karl & Russ

We had a visit from our friends from Oregon today, on New Years Eve day..  Billy Ray and his wife Vikkie (she couldn't come this trip) gave us $400 and Roy and his wife Kelley (she also couldn't come!) gave us $30! We can now pay off our propane bill , get more propane, and have gas money for the Seattle trip! I tell ya, there are angels out there! They could only stay for a couple of hours but it was a lot of fun ...what sweethearts!

It's been a while since I posted. Gator went in to the oncologist on Dec. 29th. He's been pretty depressed lately (for about a month) sitting on the couch and sleeping alot. The oncologist said it's hard to tell if the chemo is getting too toxic for Gator, or the whole brain radiation is affecting him, or if depression is getting to him, or if it's the cancer. Gator will be getting one more chemo this coming monday and then we're going to wait a month or so and try to build him some strength up and then do a CT scan and see where we're at. The last word we got was that the largest leision in his lung grew a little bit and the rest of the cancer shrunk a little. He has too many leisions in his brain for them to do gamma knife again so no more MRI's. The doctor said it's better not to know if there is anything growing in the brain and hope the whole brain radiation got what was there, then to check and see something in there and watch it grow knowing there's nothing more we can do. So it's just a sick waiting game.

YES! I got the video uploaded. It's a little blurry but at least it's up and running! LOL The song is "Help Pour Out The Rain". Gator promised to record this song with the grandbabies when he got his voice back and he did! They never even practiced the song! One take ..... and we recorded it. It turned out perfect. Gator had to restart the song about 50 times because he would get choked up whenever the music started ... but he finally made it all the way through. We have a total of 8 grandbabies but only Davielle, Miriam, and Tirzah recorded the song so that's why the pics are of them and Papa... (I e-mailed Buddy Jewel's manager and he said we could post the song....it was very nice of them to respond to my letter, I didn't really expect it!!)

"Help Pour Out The Rain" Video

Wow! Dec 6th already.....So far Gator feels pretty good on the chemo. He's still VERY fatigued and gets a little depressed sometimes because he just doesn't have the energy to do much of anything. A little over a month after the Whole Brain Radiation he started to lose his hair on his head so he shaved it.

He's in the best spirits he could possibly be in though I think after everything he's going through. He say's his voice is starting to fade though....we're really worried about that! We'll talk to the Dr. about that next week and see if he will schedule another procedure for Gator to get that vocal chord working right again. Our annual Christmas party is this coming weekend...we're really looking forward to seeing everyone. It'll be fun to get out of the house for something other than Dr. appointments or work.... :)

Pic line

Sat. Nov 14th....headed for Seattle VA at 8:15 pm. Gator got a fever of 103.3 and we were told to call if he had a temp of 100.5 and up. So we called the oncologist on call in Seattle
(Dr. Zimmerman) and he said we should come to Seattle. I gave Gator 2 vicodin at home and as soon as I wheeled him into the ER waiting room he threw up in the garbage can.

 I told the man at the desk that Gator had a temp of 103.3 but he "forgot" to write that down and it took 1 1/2 hours before they even checked Gators vitals. I went up to the desk every 15 minutes and the guy there said they only had 1 Dr. and 2 nurses and they would be with us as soon as they could. When they finally called Gator back I told the nurse that Gator had a temp of 103.3 and the nurse said "oh! nobody mentioned that!" He just said that Gator was sick from the chemo. The guy at the front desk is the same guy I talked to on the phone about the motel screw up.... Do you think he recognized our name? Jerk...
They pumped Gator full of fluids and then at about 4am sent us over to the Georgetown motel. Then at 11am Sunday morning (my birthday!) they drew more blood and pumped more fluids into him. A total of 6 bags! I sat by the bed and watched him sleep all day.

 Sent him home at about 4pm with antibiotics and a tablet for him to disolve in his mouth because he got "Thrush" from the chemo. They told us to come back if the fever came back. His blood pressure went really low while we were in there and at one point while he was sleeping his O2 leval dropped really low...like he quit breathing for a couple seconds and was a little hard to wake up...scary! We didn't like the way the nurses were working with Gator's pic line. They never wore gloves and didsn't really seem to know what they were doing. We mentioned it to each of the nurses and they all said they knew what they were doing....The wrong cap was put on one of the lines by the last nurse so I guess he didn't know what he was doing!

We went to see Jeannie at the IV clinic at American Lake the next day and she fixed the pic line right up. She definately knows what she's doing and makes this weekly trip to flush the lines and change bandages almost enjoyable! :)

Another meltdown

Gator had his first dose of chemo on Nov. 2nd. Today is Monday the 9th. Everything seems to be going ok. He's been pretty tired this weekend....slept all day Saturday (didn't get up 'till 6:30pm!) but we did the show at Rounders the night before and it whooped him! No nausea. We went to Seattle today to get the pic line flushed and draw blood to check his numbers. Everything was good. He also got an x-ray of his back bacause he's still walking a little funny. Part of that is caused by the tingling he has in his feet. He thinks that is from the diabetes but we don't know for sure. Ellen will call to let us know the results of the x-ray.
We also talked to Anna Fisher (social worker at the VA) about the jerk I talked to on the phone Sun. October 11th at 7pm. He was the Administrative Officer On Duty and I had to talk to him because there was a mix up with our motel reservations at the Days Inn (as usual!) .... Gator was getting whole brain radiation early Monday morning and so we were set up with a room the night before. He had a temp. of 103.7 (had a virus) and was sitting in the car waiting for me to check us into our room. They said we had no reservation so I called the VA. The guy on the phone wouldn't help me until I explained to him why we were coming in the night before. I gave him Gators last 4 of his SS# so he had access to Gators records but the A-hole insisted that I explain to him what procedure he was getting done! I told him I didn't feel we needed to discuss that and he said "Oh yes we do! I am the Administrative officer of this hospital and I need to know what is going on in MY hospital" then he said "as a matter of fact I'm in charge tomorrow too!" Sooooo while I was crying, I explained to him that Gator was getting Whole brain radiation. With the stress and worry of Gator not feeling good and after the long drive in pouring rain and the screw up with our reservations not to mention the fear we have about the whole brain radiation.....I just couldn't control my tears. Finally, I asked him if he wanted me to give the phone to the clerk at the motel and he said "no, he has my number, just have him call me!" and he hung up. We reported him to the patient advocate the following tuesday....then I went back in 1 week later to find out was was done and she said he was repremanded. Well, today Ellen asked us to talk to Anna Fisher about it ...... so we did, she said she thinks we should get an apology..... Gator says he just wants to make sure it doesn't happen again. Maybe they should give the guy some sensitivity training! Ok....I'm done, Gator feels good considering all he's going through.....Love & Stuff

pic line

Gator got the pic line put in yesterday and a shot of B12. (I am working on fixing this 2nd blog and adding some pics....just can't seem to find the time and still having computer probs! I have some stories to tell about our trips to Spokane...Oregon...and Seattle!) He's still feeling a little sluggish but a whole lot better than he did last week. Waiting for results on an x-ray he had today on his hip....he's been having a little pain. Just a "hitch in his get along"...... they should call with the results tomorrow ... we hope! Love to all!

Rad Onc

  Gator goes back up to see Dr. Grim on Oct. 27th and is supposed to get his pic line put in at that time. He will also be getting a vitamin shot at that time. He has to get this shot 1 week before he gets the first dose of chemo on Nov. 2nd...and a week before each dose of chemo after that. This new chemo can damage the bone marrow if you don't have the right vitamins.......

Whole Brain Radiation

Today is Oct. 9th.....We just got home from Seattle. Tuesday morning at about 4am Gator woke up shivering. We couldn't take his temp. at that time because he was having a panic attack because he couldn't breathe. Got him on O2 and he took a Lorazapan and a codeine sulfate and I thought he took to Tylenol. Two hours later I found them on the night stand. Next time I put them directly into his mouth! :} We were able to take his temp. at that point and it was 103.4.....Anyway he took the Tylenol and I called the oncologist in Seattle. We decided that he would be seen quicker if we just went ahead and kept an appt. in Seattle at 2:00 with the oncologist rather than wait for several hours in the urgent care in Lakewood......I know it sounds crazy but it's true! After examining Gator and doing blood tests and an x-ray, Dr. Grim decided Gator should get some IV fluids that day and that we should stay the night in Seattle so he could get them the following day also. Well, it turned out that we had to stay Weds and Thurs so he could get fluids 3 times.


Friday morning: He got his first "whole brain" radiation today". He feels pretty good....has a slight headache and feels a little shaky but thinks that could be from the virus that he has. All in all he says it wasn't too hard on him......He'll be getting 5 doses of radiation (staying in Seattle next week) and then hopefully start Chemo. on Nov. 2nd. We came home for the weekend.  I have to go do the show on my own :( at Rounders tonight so gotta go.....love to all! (Gator still has a very positive attitude even though he's pretty worried about the side affects from the radiation...)

    

It all starts with the long walk....Gator says "to the electric chair"

They made his mask the week before.  It was heated up and formed to his face so it fit REALLY tight!  Gator said he couldn't even blink!

They bolted the mask to a table so he couldn't move...

                                     

Then they left him alone in the room and zapped him with radiation...he was in the mask for about 15 minutes ..I don't think I could handle a full minute in that thing!

                                       

They watched Gator on these little monitors from another room.

We've been in Seattle since Sunday night...this is Thursday night. Gator had  the last of 5 treatments this morning. He has a slight headache, his stomach is feeling a little queasy and he feels "Wrung out"....other than that everthing went fine... they gave him the mask to take home.  He hasn't decided what to do with it yet.  Beat it to a pulp with a baseball bat....make it into a chia pet, or make a bust of himself and have me paint it!  LOL  (The next pictures are of what is through the door behind Gator, behind the blue wall)

They gave us a tour behind the wall ...the inner workings of the radiation machine!

The machine rotated full circle....

Results

Sept. 30th...... Gator had the MRI, and Ct scan done. Oct. 1rst ..... The oncologist, Dr. Grim, called from Maine to give us the results. He said he knew we would be anxious so he didn't want to make us wait until he got back from his trip. You gotta love that guy! Unfortunately the news was not good. They found 4 or 5 more spots on Gator's brain. The mass in one lung has grown a little bit and the other lung has two new small spots. The pain he has been having in his stomach is another mass. We will go to Seattle on Oct. 7th at 2:oopm. We find out then if they are going to do another Gamma knife or whole brain radiation and when he will start back up with the chemotherapy. Probably within the next couple of weeks.

MRI,CT Scan, Ultrasound

Pat and his brother came out for a visit!  Looking Good!  :)

Today is Sept. 25th....we'll be going to Seattle VA on the 30th of Sept. to get an MRI, CT Scan, and an abdominal ultra sound. Gator has been having pain a few inches to the left of his belly button for a couple of months now. I'll post more when we know more......other than that he's still feeling good. He's got such a positive attitude.....if he were falling off the empire state building at about the 50th floor he would say "So far, so good!"

From here on I will post things as they happen (or try to!) but you do need to read down to the bottom of the page to make sure you're up to speed on everything that has happened. Sorry I did it so "bassackwards"...
6-23-09
Everything looks great on the CT scan; Dr. Grim (the oncologist) says that the cancer in Gator's lung has shrunk up even more since the Chemo was stopped. The problem is that they found 1 or maybe 2 more lesions on his brain. We have to wait for Dr. Rockhill to give us a call and tell us what the next step is. He's the one who did the Gamma knife surgery on Gator. Pretty depressing news but we're thankful that they didn't find more spots on his brain!

Well, Dr. Rockhill finally called after about 2wks...he said they would schedule Gator an appointment at his office to discuss Gator having the Gamma knife again.

7-21-09
We got to the University of Washington Medical Center at about 2:30 for a 3:00 o'clock appointment with Dr. Rockhill. The people at the information desk in the front lobby sent us on a wild goose chase and so we got to where we were supposed to be with only 5 minutes to spare! We filled out the paperwork that took about a half and hour to complete and then finally got in to see the Doctor. He said that because Gator still has such a great quality of life, he is still mowing the yard (when he get's around to it!) and singing and woking, he would recommend having the Gamma knife done again. He could get whold brain radiation but we really want to hold off on that as long as we can. So I asked Dr. Rockhill how soon they could do it and he said "how's Thursday?"...Today is Tuesday! I said "Perfect!" and Gator just said "Whew!"...

7-23-09
We left home at about 8:30am...going to Harbor View for the Gamma Knife surgery at "high noon"...They had us wait in a little waiting room
(examination room) in the front of the office.














A nurse came in (Lisa) and said we would be playing "musical rooms"...

After only about 10 minutes they came in and got Gator and took him to get x-rays of his brain. This wasn't an MRI, just "head scans". They brought him back about 15 minutes later and put him into the "left" room.

Camera Shy "Hoot"

The first time he had the Gamma knife done we were in the "right" room. After setting the room up and spending about 5 minutes with us, nurse Lisa said "you guys are a hoot!" Gator's daughter says that all the time...so I had to text her and tell her what the nurse said. LOL From then on Gator referred to Lisa as "Hoot"...

Gator took his Lorazepan to get "loopy"

It didn't take long for the lights to go out!

I got to watch Gator sleep for about 30 minutes and then nurse Joey arrived making all kinds of noise setting up the cage getting it ready for the doctor. Gator woke up and about 15 minutes after that, in came one of Gator's linebackers!

Only one linebacker this time, (there were two the first time) his name is Dr. Rostomily and he is actually an associate professor at the UW and he wasn't really a linebacker...but he was a tight

end for Ohio State! LOL Gator says he thinks he looks pretty good with a tight end...heh, heh, heh....

Dr. Rostomily said; "Let's Gator-Done!" and started to put the cage on Gator's head with me standing there! I said Oh no!....I think I'll leave the room now! So I stood outside the door and waited. There is no way I could watch them bolt that thing to his head!

After they put the cage on, they took him down for a high resolution MRI...when they brought him back he was really loopy and was using the bowl that they had given him to put everthing that was in his pockets in, as a steering wheel and had pretended to be driving all the way back!

Gator saw nurse Lisa walk by the door with her lunch and said "hey "hoot" where you going with that grub?!" LOL "Hoot" brought in some lunch for him and we waited....

Finally at 5pm Dr. Rockhill came in with some horrible news. The results of the MRI showed 8 spots not 1 or 2 like they had seen on the first MRI. He said apparently we don't have quite the handle on the cance from the neck down like we thought we did and he also said that the standard procedure would be for them to remove the cage and send Gator down for Whole brain radiation! We were totally stunned! They had told us before, when he had the first Gamma knife that more lesions could be found with the high resolution MRI and if there were too many they wouldn't do the surgery but to go from 1 or maybe 2.... to 8 lesions! It was definatley a "didn't see that one coming" moment. Dr. Rockhill said that the good news is that all of them were about the size of the tip of a ball point pen and because Gator's last high resoultion MRI was done Dec. 31st that meant that the lesions were growing really slow! He said he would go ahead and zap them even though there were so many. I love that Doctor!!! So they took Gator in to "Gator-Done!"

I sat in the little room by myself and had a meltdown while calling about 100 people or so. I burned out both my battery and Gator's on our cell phones!! Nurse Lisa (Hoot) sat and talked with me for about 1/2 an hour, she was so nice and really helped. Thank you all for being there...

They removed the cage at about 8:30pm and we headed down to the parking garage.

On the way to the car we stopped to look at the sunset... The doctors all came out together and we followed them down to the parking garage. Dr. Rostomily saw us at the Beamer and called me over to his pick-up to tell me to be sure to put the top down because Gator loves the wind in his hair...

We were both pretty tired so we headed back to the motel and I think we were both asleep before our heads hit the pillow.

Trip to Oregon, Tri-Cities and then Spokane

8-04-09
On our way to Seattle I called the VA hospital just to make sure which department we were supposed to be going to. We got an automated call confirming our appointment for 1:30 but it didn't say where, just the Seattle VA. The operator told me the appointment was in Hematology! Well, all the way to Seattle, Gator and I tried to figure out why the heck he was going to Hematology. He said; "I suppose now their going to tell me I've got Leukemia!?" They said where we had to go was the East wing...it turned out to be the same place Dr. Grim (the oncologist) is located! Whew! Another scare...

Gator with Dr. Grim.........and with Ellen!

(They didn't recognize him when they first saw him!)

Anyway, Dr. Grim told us that he does think we have a good handle on the cancer from the neck down and that the spots in Gator's brain were probably very slowly growing and not a new spread. He doesn't think we need to begin chemo right now and he say's it's not his department but he doesn't think we need to do whole brain radiation right away either. He still thinks we should hold off on that, but he leaves that decision up to Dr. Quang the radiation oncologist. In 30 days Gator will have another MRI & CT scan to check on the lungs and brain then we'll go from there. All in all it's been a great day!

We are leaving in the morning for Oregon to visit with family and friends... and then to Spokane for more of the same! We are taking a 3 week break!!! On the road in the Beamer with the top down!!

Gator says: "Life is Good!"

8-5-09
Wednesday

Drove to Coberg Oregon today....beautiful weather, we travelled all the way with the top down!

8-6-09
We spent the day with Karyn and the grandkids....Karyn and Allie washed our car for us!

Tanner and Grandpa

 For Gator's birthday (before we left home) I called Billy Ray, and Roy and a few other old trucking buddies of Gator's (he drove truck with them over 35yrs ago) and asked them if they could put a surprise party together for him.  I told Gator that we had to go see Billy Ray Friday night and that Billy's wife Vickie wanted to cook us dinner for Gators birthday.  It worked out great because Vickie called while we were at Karyn's house so I pretended to ask her if she minded if Karyn and Kevin (Gators son) came with us...she already knew they would be there but Gator was listening!  LOL 

8-7-09
Gators birthday...

A very rare picture of Karyn cooking breakfast and another of her washing dishes!

Poor Princess!  LOL

We went to Marathon with Karyn's cousin Mike (in orange), Gators son, Kevin (white shirt), and Grandson Tanner. 

We got to check out Lil' Kim's bus. I guess I should say we got to check out the "coach" those things start at $150,000!! Very cool...

This one isn't li'l Kims coach... it was inside and camera's weren't allowed inside.

Friday night we headed to Billy Ray's with Karyn and Kevin, and their Uncle Mike following.  On the way I was talking to Gator about why I thought they shouldn't have come with us.  I told him we were just going to see Billy and that they wanted to listen to old trucking stories.  Gator fell for it and was saying "yeah, it's just gonna be me and Billy and our stories might not be as entertaining as they think they should be...but they are for us, we need to catch up on what each other has been up to!"  He didn't want to disappoint the kids and was feeling the pressure!  I know it was mean but it really worked...He had no clue!  We turned the corner into Billy's drive and there stood about 15 of Gators old friends out on the porch!  He was so suprised...He said "Wow!  What's this?"  It was very cool.

Kevin, Roy's sister-in-law Kimberly, Karyn and Mike

Vickie BBQ'd for everyone, made a bunch of food and there was a cake....it was awesome!

Billy Ray, Gator, Roy and Alec

Billy Ray & Vickie, Me and Gator

Gator & I with Alec and his wife Deb

Alec was so tired!...He got up in the wee hours of the morning, drove truck all day and then drove about an hour to be at Gator's party.

Harley and Jeff Patterson

Karl

Before we left home we bought a little digital voice recorder that I told Gator I just had to have... we turned that thing on and put it in Gator's shirt pocket and recorded some of the stories that were told that night!  Gator said that a few times he had to put his hand over his pocket before he could let the person in front of him speak!  I'm not even gonna ask...

8-8-09
The next night (Saturday) we went to Karyn's 40th birthday party.  It was held about a mile from her house on a beautiful piece of property that belongs to a friend of hers. 

They had games, a live band and lots of food...Gator got to visit with some of his old friends and some of Karyn and Kevin's mom's family. 

Alli and mom

Tanner in a water fight with some friends...

Karyn with grandbaby Tiffany!

Gator's son Kevin, his cousin Mike, and Karyn

We had a great time but we couldn't stay out very long because the night air was really getting to Gator and he started to cough so we left.

Gator and Karyn

Karyn's husband, Kyle....with Gator

Our other grandson, Justin, was there but he's a busy guy so we didn't see much of him.  I had to use last years pic of him!

Our good friend Jill sent me an e-mail yesterday, at the end it read;
Life isn't about waiting out the storm...it's about learning to dance in the rain!
Gator say's "our dance card is full!!" LOL