johnnydeep

Celebration of life~ Tomorrow 4-8 @ DMYC

2009-07-08T09:48:00.000-07:00

Hi all

I am keeping busy getting the service together. There is so much to do! The service is supposed to be a celebration of Johnny's life so the pastor will try to bring some happiness and sunshine to the event. There will be a time for everyone to get up and share something about Johnny if you chose OR you can have the pastor read something for you if you give it to him before the service or email it to me: tbpharmd@yahoo.com After the final song we will have snacks and socialize. You are welcome to bring a snack to share. The service is at the Des Moines Yacht Club which is at: 22737 Marine view drive
Des Moines, Wa 98198
or call them @ 206-878-7220
or me @ 206-718-8883
Thanks!!
:)
Tammy

Johnny's Service @ DMYC 7/9/09 from 4-8

2009-07-05T21:27:00.000-07:00

Hello all,

Thank you for you kind thoughts, prayers and words. I have been constantly surrounded by friends and family.

Johnny had been planning to join the Des Moines Yacht Club at Quartermaster harbor for their annual fireworks display. He really wanted to spend the night on the boat one last time. He didn't quite make it in body, but he was there in spirit. I chose to go on the cruise, because I believe Johnny would have really wanted us all to be there. We even took our boat, which has not been on the water in several months. The boat (Scuba Doo) had some fuel filter problems on the trip over. That was VERY stressful cuz we lost power in the shipping lanes with a huge container ship headed for us. We made it to the raft out eventually. The guys drank the 2 beers (Abyss and Stone Brewing~Bitter Chocolate Oatmeal Stout) that Johnny was saving for 4th of July and they toasted him.

I definitely have a lot to learn still, but luckily I have lots of people to help teach me. I may never have Johnny's natural boating talent, but I do not intend to give up. I will figure it all out. I probably need hours and experience more than anything to give me the confidence that will help me just jump in the boat and go.

I am still working on a memorial service. I have a place and time, but don't really know what will happen yet. The service will be at the Des Moines Yacht Club on July 9th, 2009 around 4-8pm. I will add details as they are planned. This is all new to me, Hopefully I will never have to do it again.

Thank you again, and please continue to keep me in your prayers.
:)
Tammy

The fight has ended.

2009-07-02T23:39:00.000-07:00

Johnny passed away peacefully in his sleep between 6 and 8am this morning (7/2/9). He has still been fairly active and happy up thru this past Sunday when we had a small gathering at our house. Monday he started having very severe pain which was treated with heavy narcotic doses. That, of course, causes alot of constipation which makes the pain worse. Well, he never bounced back after Monday. He got much weaker and incoherent. We were still trying to treat his symptoms throughout Wednesday and over night. Around 1:30am Thurs, Johnny started vomiting. We had difficulty moving him or even getting him conscious enough to turn his head to vomit. After a few calls to Hospice, various medications, new sheets and a mini bath, we got him calmed down enough to sleep. His breathing was labored-even with oxygen, but I could not give him any more medications. I tried to calm him by talking to him as much as I could. eventually, around 5:30am I finally took a short nap by him. I woke up 2 hours later and he was gone.

As soon as I discovered Johnny's death, I called a few friends, who called a few others, etc and was very soon surrounded by love and hugs everywhere in our home. As we have said many times before....we are surrounded by the most amazing group of friends that anyone could ever imagine!! We ALL leaned on each other, cried, passed kleenex, drank, ate and helped each other through a very tough day.

I need to get some sleep if I can, since I only got 2-3 hours last night and today was probably the toughest day of my life. Thank you all for your thoughts, prayers and strength.

I will post details of the memorial service as soon as I can.

Thank you
Tammy

Tattoo and Livestrong Challenge!

2009-06-06T22:04:00.000-07:00

Hello Friends!!

Most things here are pretty normal. We have actually seen SUN in Seattle a few times!! Very exciting!! Johnny is having his normal appointments, massages, RN visits, lots of visitors, occasional outings for dinner etc, etc. The biggest event has been that Johnny FINALLY got the tattoo that he has been talking about for the last 3-6 months. He has been SOOOO excited. below is the picture.

Another Less enjoyable event was his most recent Doctor visit. He has a new melanoma growth on his neck, basically at his lymph gland area. It is about the size of a golf ball and hard. He is also getting weaker every day and deteriorating pretty regularly. He still has alot of good times, but they come and go. We are trying to write down some of his stories from his past and just enjoying what we can.

On a better note, a friend is biking in the Livestrong Challenge on June 21st (Father's Day) in Johnny's honor!! That is the foundation started by Lance Armstrong to help fight cancer. I will include the link to his Livestrong page in case anyone wants to check it out or donate. It is tax deductible.

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=294734&lis=1&kntae294734=23532CD0C27C4651915E3F52647C04F1&supId=241281826

Since I generally don't trust myself with computers... in case the link does not work...

http://www.livestrongchallenge.org/ pick the donate tab Seattle and search for Lief Zimmerman.

Well, I think those are the main things that I wanted to share for now. I hope all is well for everyone out there! Thank you for all the prayers and comments!

Tammy

Johnny...the social butterfly!

2009-05-18T14:42:00.000-07:00

Hi all!!

We've been trying to keep johnny busy, which means we've been keeping busy too! We took him out 4 nights last week that I can think of. Two of our friends have been out every night for the Seattle beer festival. We went to the University district for beer and brats on Wednesday night and met the owner and sausage maker as well as the brewers that were featured that night. It was fun. I got him to a yacht club meeting long enough to chat with friends but not too long for the 2 hour board meeting. Saturday, we simply hung out at a friend's house. Sunday was the best day... Johnny got to go on the boat with his buddies to the Tides Tavern while I took my dad and Kyle to the cheese festival in the Pike Place Market. It ended up being a long day with the extra stops on the way to take Kyle home, But a very fun cheezy day!

Thanks for the comments! We love the support!

Tammy

UPDATE!!! Doing pretty well

2009-05-10T21:27:00.000-07:00

Hi everyone!! This is Tammy again. I am SOO sorry I haven't updated this more recently. Johnny is actually doing better than I expected. He is by no stretch cured. My concept of a daily blessing has changed drastically over the last few months. Johnny is still fairly upbeat...he does have his bad days, but he is surrounded by the best group of friends anyone could ever dream of--as I am too. THANK YOU!!!!

April 25th was the Big Birthday Bash 2009! Johnny was pretty much our celebrity guest and I was allowed to be by his side for most of the evening. We had an AMAZING turnout of over 200 people!! at the Des Moines Yacht Club. I even did a dance with him in his wheelchair-it was kinda fun! The night was a blast for both of us. We saw people from his childhood, his doctor and wife, family and friends flew in from all over, it was AWESOME!! He kept saying he just wanted to live thru the party..... well--he still hasn't given up yet! I hope to keep that going!

We tried to get Johnny to Des Moines for the i Boat NW cruise the first weekend in May, but it just didn't happen. It was frustrating, Johnny, Dad and I sat around the house all weekend waiting for the muscle men to help, but time just kept slipping away. Finally, we decided to go Sunday, but that didn't work out either. I didn't even think of going there to bring you guys to us!! I didn't even think anyone would know who we are! I guess I should read the blog more!! This has always been Johnny's project. He was always on the web and chat boards for Everything!!! He has lost most of his vision and all of his right sided-everything, so he hasn't been on the web for a few weeks. I have been very busy with the steep learning curve of caring for Johnny. I will try to make this a much higher priority. I will work on a weekly update.

Thank you for all of the support!!

Tammy

From...THE WIFE!

2009-04-17T21:08:00.000-07:00

Hi everyone,
This is Tammy, Johnny's wife. Johnny's symptoms are getting worse so he asked me to say hi to you. His spirits are still up, but the news is not good. The main lesion in the center of his brain has grown from (1.9 x 1.6 x 2.0 CM) to (3.0 x 2.2 x 2.8 CM); That is approx 50% increase since 2/18/09. There is also a new midline shift in the brain due to the location of the lesion. His symptoms are worsening quickly. Basically, his right side does not work. We have a ton of stairs in our house, so he is pretty much sticking to the main floor right now---which means he is planted in the beautiful living room watching the Puget Sound with the ship traffic and birds etc. That isn't TOO bad. The prognosis was very dire, they mentioned 2 weeks on the low end, but I know my stubborn husband and hope he will prove them wrong!!!! His favorite beer is Arrogant Bastard! Their slogan is 'You're not Worthy' We met one of the owners who said he IS worthy and signed the menu that way. His fighting spirit has already proved that, but neither one of us will quit now.

Thank you for caring! It helps keep him going!
:)
Tammy

2009-04-15T11:07:00.000-07:00

Just a quick update, We saw the radiation Doc yesterday, and the news was less than good. One new lesion in my brain and the big one is tying to take over the universe! It may just be swelling, of wich there is ample evidence, but even that makes the thing bigger.
Melanoma lesions also like to bleed. They bleed while gowing and bleed while shinking and bleed fo no reason at all!
I need to get rid of these little bastards in my head before that happens.
We see my Onc. a little later today, I have some promising stuff in hand...and I am pretty sure he has something to...

Wish us luck

Headaches and fatigue

2009-03-30T16:46:00.000-07:00

Very low energy, And headaches, had one bad enough Saturday night and wound up at Harbor view ER and NueroICU. NO BLEEDING...YAY!!!!!!!!!
Hurt pretty bad though, and remember, I am comparing it to ripping fingers off and multiple kidney stones...
I am just thankful that the leison was not bleeding! That scares me more than anything right now.

I think I have too many people pulling for me for anything to bad to happen...
Thank all of you!

Short and sweet

2009-03-17T09:27:00.000-07:00

I'm having a hell of a time with fatigue, other than that I think I am doing pretty well. The steroids are ramped up and I as bigger than ever, though strangely my weight has gone up only3 to 5 lbs...swelling I'm sure. The symptoms have gotten a bit worse in my right hand, but not much. I do pretty normal walking around in the open but I have to have help when I am in a store or I bang into shit constantly. So I try to take a cane with me now. Hopefully I won't need it for very long! I should start getting some energy back in the next couple of weeks.
Hell with the dose of radiation they gave me I probably have parts inside glowing

Titanium bolts part 2

2009-03-07T15:48:00.000-08:00

I had to do this in 2 posts. If you have not read the first half please go to the next post and the this one, thanx

So this is the little (350#) creature that does all the work. I got to talk to the radiation doc quite a bit as the had to change it 3 times. Basically there are 201 pieces of cobalt behind that big steel door. My head snaps into place in the jig so it is actually up in that helmet.

That's why they don't want it moving around on my head. There are 201 precisely focused beams that care nothing about me...just where that frame is!

And here is the doc literally SNAPPING my frame in place! Beached walrus alert! Actually as grumpy as I have been Tammy might prefer a walrus right now!

So after its all said and done, the take the frame off and let you go home!

Makes some pretty nice holes in the head!

Oh yeah..I cant do anything simply. Remember that little gusher I was talking about on the left rear...Well come to find out it was the occipital artery, and, of course, the best treatment for arterial bleeding is pressure. Once the bolt was in we had plenty of that! However, all good things must end and when they pulled that one out pandemonium broke out!

Tammy said it was arterial pumping just like you see in the movies...pumping out about four to five inches with every heart beat. I mean its not life threatening with a little artery like that, but it sure does make a mess!

He tried staples...

He tried a couple of stitches with the staples...

No good, so the stitches came out along with the staples, my head has a bald spot and I have three stitches holding an artery into the back of my head!

Nice huh?

I will update more, but the radiation is really making me tired, I should be over that in a few days!

Just suffice to say that the future is a lot brighter for Tammy and I than it was a couple of days ago. We still have a lot of storm clouds out there, and can hear thunder in the distance. But right now its warm and sunny, and a possibility that the winds may change!

Titanium bolts in my head!

2009-03-07T08:52:00.000-08:00

This is what the tools of torture look like. Actually the needles are local anesthetic and half my head is still numb 2 days later! That's something to keep in mind as you look at the rest of these!

This is what the frame looks like bolted to my fat head. Yes that's blood on my shirt. The neurosurgeon hit a bit of a gusher with the right rear!

One of the bolts that they use to fasten the frame to your skull, yes into the bone, and it just punches through the skin (and fat).

They do this because after the frame goes on, I had to go down to MRI and get a fine slice scan done. The frame is now the reference to the tumor and since its is a pretty precise operation involving massive doses of radiation to very specific points in my head...it would be bad if it moved.

After MRI I got to wait. They take all the images and and map out a treatment plan on every single one, feed it into the computer and come up with a program.

2009-03-06T14:57:00.000-08:00

the frame is on...

Brain Tumor MRI

2009-02-27T14:19:00.000-08:00

Pretty self explanatory I guess. Kind of a bad place for it!

Of course I have a bunch to go with it...They are just down in stuff that's not really important, lungs, liver, bones...you get the idea.

And to think, I have always been a big believer in organ and tissue donation. DOH!

Yes...Stable

2009-02-25T15:37:00.000-08:00

Everywhere but in my head. Hell every ones known that for years!
The rest of it?
Well, here is the scoop.
They have me on really high doses of steroids again, thinking that they will help reduce the swelling in my brain. This in turn should reduce my symptoms. Then we can do the gamma knife next Thursday. The gamma knife will probably cause more swelling. Now here is one of the neat little things- They are not sure. When or if I will get any swelling. So I won't be very far from steroids for probably a year! Love this stuff.
Wish I could blame it on my cell phone, blame Motorola, get a huge settlement, buy a big boat and go retire of the coast of Italy...oh yeah there is that pesky tumor thing, constant medical care all that!
Now if we can't get the symptoms down with the steroids then I will probably have to do whole brain radiation (WBR) first. Not fun, and it will just be to try and knock this one tumor back enough to do, you guessed it, gamma knife!
Worst case is letting it grow, that would probably leave me with 4 to 6 months.
Nah...I at least want to get out on the boat in some nice weather!
Besides if we can get this one under some semblance of control, then I have a decent chance of doing other treatment for the rest of my little nest eggs if the ipilumimab stops working!
For now that means I am not supposed to drive, some of my right hand, right leg(thus my poor typing skills;-} ) and a chunk of the right side of my face and teeth are numb.
Oh the irony...now that I can get a tattoo relatively painlessly, I have nothing in mind!
I wonder if a tattoo would cause problems with lymph edema?
I'm not sure that I am in the right generation to ask that question...

Stable

2009-02-24T17:15:00.001-08:00

Thats a good word!
I like it!
All my tumors seem to be behaving, exept one. Kinda narrows the fight down a bit!
No official results 'till tomorrow

First day out

2009-02-22T11:29:00.000-08:00

Yesterday Tammy and I took the boat to Gig Harbor, and once I got it away from the club dock she ran it all the way down and docked it at the Tides dock!
We did not get there in time for breakfast, so we had a pizza and a couple beers, visited with every one, seems that we are getting to know most of the staff, and what a great bunch too!
I actually felt like walking a bit, so we went to one of Tammy's consignment shops and found a dog treat store for Kiko.
We took of from Gig Harbor about 2 or 3 and went over to Quartermaster Harbor and rafted with a couple of friends from the club that we knew and a couple more that we now know! Had a few drinks and wound up staying for a very fun dinner. We thought about spending the night, but I left most of my drugs at home, and it did not seem very wise to miss a couple of doses right now!
So we left about 9 or so and just idled home at about nine knots. Never hit anything but at that speed its pretty hard to do much damage with floating debris.
I don't really know how much longer I am going to be able to do this stuff, I guess that's why I have such a good time when we can go..

Here I sit in 7SW again

2009-02-19T20:07:00.000-08:00

Same place I had my bio-chemo!
Had an MRI yesterday because I had some numbness in a couple of fingers and part of my face.
Yep, you guessed it. My melanoma has metastasized to my brain. So I have a really ugly tumor in my thalamus and right on my brain stem.
Cool huh?
This stuff is so fun. I just love skin cancer!
After the test results came back last night, I checked into the UW hospital this morning and spent the day getting poked and prodded by neurologists, neurosurgeons, radiology oncologists and I am not sure how many others. They showed us the MRI views of the tumor (ugly bugger) and, after much hemming and hawing and several meetings, and getting the same initial workup from 4 or 5 different specialists, they came to the conclusion that its inoperable. Its to close to to much important stuff in my brain.
Well maybe not important in a world changing way, but its nerves and gray matter that I am kind of attached to!
So its sounding like I get gamma knife radiation treatment.
http://gammaknife.org/
Kinda cool.
I will make sure I get pictures with frame bolted to my head!
There is a good bit of swelling that they are going to try and get under control with my favorite thing, Massive doses of steroids. Woo Hoo! Because I have not swelled to the size of the Hindenburg yet...Maybe soon.
Oh and the radiation can cause swelling too. And its more steroids to make that go away, maybe as long as a year. Although at this point it does not sound like I should be making plans that far out. Which by no means should you take that as that I am giving up. Hell I have already lived well beyond average for melanoma with this many tumors. Speaking of which, I still have to have a full CT to see how the rest of my little blackened lumps are doing. With any luck they are still stable or, gasp, dare I wish? Shrinking?
Hopefully they will do the CT tomorrow as they are not going to let me out of here until after my "surgery" next week, seems like a good idea, since I will be here anyway.

Sea lion lunch, maybe graphic to some!

2009-02-16T11:05:00.000-08:00

As we where coming out of Gig Harbor we saw a commotion and went over to check it out! Looks like a skate or a halibut for lunch!

Intermittent posting

2009-02-16T10:30:00.000-08:00

I wish I had more to say right now, but everything is kind of in limbo 'till I get my next torso CT. I'm Guessing they may do an MRI in my brain to, as I have been having persistent numbness in my right hand and on the right side of my face. My brain has been clear of tumors so far, and the numbness may be something else.
Actually thing are looking pretty positive. As far as we know I have been essentially stable since I started the Ipilumimab Trial back in September. As I have said before, that does not happen with melanoma unless something is working!
So some days I spend sleeping and some days I get out of the house, as the drugs taper down my good days are getting better and the bad days are not so bad, although its an interminably slow process.

I think Salmon has opened in the sound again, and I can usually come up with enough energy to put the boat in and maybe fish for awhile, then I can leave it at the dock for 2 days a week before I have to pull it out again...Kinda splits up the work. I would like to do a little fishing!

2009-02-08T11:42:00.001-08:00

ScubaDoo at the Tides again

2009-02-06T11:37:00.000-08:00

Well there has not been very much going on. One of the side effects of all the meds I am on to manage side effects of the treatment is tremors, and when they are bad it makes it hard to do much of anything (I did manage to get the toothpaste on the toothbrush on the first try this morning!). Between that and my total lack of ability to multitask, I have not been getting much done. Went to the boat yesterday and managed to change a fuel filter! WOW!
Oh well I have been getting breaks and the tremors seem to come and go. Hopefully as I taper down on my meds most of these side effects will go away. It just such a frustratingly slow process.

I was watching my nephew and his friends cutting wood in our backyard. And it really drove home how far down this stuff has hammered me. I used to be able to work circles around them..Now I cant even split a half load of firewood much less cut, split, load, haul, unload and stack 2 or 3 loads a day.

I had a bit if a glimmer last week though. I had several days in a row that I felt pretty good, and got out and got some exercise, I am going to force myself to do it again today. Besides Sir Kiko Canine likes the walks...he was pretty mad at me yesterday for not walking the entire length of the marina. He does not understand tired... But I will let him take me for a drag today regardless of how tired I am.

2009-01-31T10:49:00.000-08:00

So I get this link emailed to me a few weeks ago, and I have been so wiped out that it kinda got pushed to the back of my mind.
Since I think its pretty cool, I want to introduce everyone to Leif. http://blief.zwise.net/?p=306#comment-1103 .
This is how I found out about it and it kinda floored me!
I also want him to raise as much as he can.

You can help out by going to Leif Zimmerman's Live Strong Challenge page

I know there is not much I can say, other than "thank you Leif!"

Sometimes it feels like its this kind of thing that gets me through from day to day!

Update

2009-01-30T09:41:00.000-08:00

Went in for a chest ct yesterday morning. I have been coughing up a bit of blood occasionally and we wanted to see if it was something serious. Got the results back and it actually looks pretty good...no sign of an infection. My tumors are all still present and accounted for, but the seem to be pretty stable. Actually a few of them seemed to have shrunk a bit! That may be due to the difference in ct method too. This one was without contrast, most of them are with contrast. They did find one tumor that poked into an airway and that could be where its coming from, or it could be sinus related.
At least we know its probably not to serious!
And with the apparent shrinkage, I am looking forward to a full blown ct the end of February!

hi everyone

2009-01-28T20:58:00.000-08:00

Well in the new year a lot has happened!
We got away on a cruise with the yacht club(with Kyle) that was a huge relief...even if my wife did go to the bar with my friend....(trust me, I was sleeping on our boat and she needed the time___it was a good thing!!! Any day at the Tides Tavern is a good day, especially when you get there by dinghy!)

Its been a tough couple of months for me, but I am finally shedding some of the prednisone(steroid) and will start tapering some of the other drugs tomorrow. I have a CT scan tomorrow at 9 as I have been coughing up some blood...most likely from my sinuses, or a fungal infection in my lungs. The odds are against it being tumor related...but we have to make sure!

No pics for awhile but we have had some really interesting weather...I just have not had the energy to do much, I have been doing good to get out of the house for the weekends...That is changing now

I have had more energy and more motivation over the past week or so...and I am getting more exercise too! Every little bit helps!

I guess that's it for now, I will keep up better now that I am coming out of it a bit!

2009-01-21T17:12:00.000-08:00

I know I have not posted in awhile...mainly because of flat out fatigue from the meds. I have not had much energy for anything...so I have been gaining weight and being depressed...
There is a light at the end of the tunnel though...I have been getting more energy in about the last week, although I have been doing more too! Which leaves me just as worn out...its going to be a long road to get back into any reasonable condition!

More soon!

Wow...

2009-01-05T23:31:00.001-08:00

I kinda crammed allot into that last post!
I have been kind of crappy lately, with periods of cramping... Not what we wanted and hopefully not a setback.
We will see Wednesday. If they have to take another look "up there" I hope they will find either my head or my dignity and nothing else!!!
I know I ripped that off, but its still funny. Tammy is the one holding my ha.. (whatever) through the whole thing!
I am telling you, my opinion has not changed! There is nothing like true love! And holding your spouses hand while they shove 3 feet of camera...well you know where...
And she can still look me in the eye and tell me she loves me!

I'm sorry, I kinda think that's a big deal!

Of course I love her, and I really do hope they find my dignity, if not my head...

I'm OK with that too!

Merry Christmas and Happy New year

2009-01-01T10:47:00.000-08:00

I have a lot to get caught up on!
I have finally tapered down the prednisone to the point where it no longer counteracts the other drugs, now instead of being awake 5 nights a week I am sleeping 15 hours a day. I can't win! Its progress though and I am now bottomed out on the steroid and we should be able to start tapering down some of the other stuff. The fatigue is almost as bad as the interferon.

Christmas, wow, we had enough snow to really screw everything up, but almost all of the family eventually made it! We had several dinners here and I even did one by myself (Tammy and her mom helped with cleanup!) Its been an experience as we were going to list the house before the holidays. So we started decluttering and packing. Then we decided to wait until after the holidays, just for our own sanity. So about a quarter of the house is packed. And guess where everything we needed was? Right! And we had no clue either! We made it though! And we are not sure what we are going to do as far as listing the house. We may or we may not, its a hard decision. Its a lot of money and a huge house for Tammy by herself. We are going to be a bit better off money wise that we thought, my disease is stable and its a crappy time to sell.
Its also a great time to buy.

One of the biggest surprises was what our friends got me for Christmas. Everyone got together and bought me a new propeller for the boat. You may remember that we spun the hub on the old one coming home from Bremerton a few months ago (Tammy was skipper and thinks she managed to break it). And with everything else going on we have just let the boat sit instead of putting money into it.
Apparently there will be no more of that, they are all tired of me being a landlubber.
You know, ya just cant explain how that makes a guy feel, or figure out a way to say thanks...
I am constantly amazed at how much we get back from everyone, I think its why I am doing as well as I am...I really do!

Not working!!!

2008-12-19T21:26:00.000-08:00

I thought I had posted from my cell phone so I apologize for dragging this out a few days!
Thanks Verizon, for letting me down once again!
I just want to let everyone know that my scan came back as "stable, no progression of disease"( I still have a full load of tumors...but they are behaving for now!)That means my tumors have laid low for 3 months, and as aggressive as this shit is, that is a BIG deal...and I have another milestone that I think you should know! I have made it a year!!! That is a big deal with metastatic melanoma! Yeah I'm young, but this stuff is aggressive as hell, and normally I would not stand a chance. "IPI" has givin me a chance...Will it be enough?

OK! Now! Everyone in the sun all the time, how long has it been (if ever?) since you have seen a dermatologist?The ONLYway you can avoid what I am going through is to catch this shit early...and your Doc cant do it! A dermatologist can get it right 95% of the time, a family doctor will get it right 55% of the time...Trust me, read my blog! DO IT NOW!
Thanxs everyone, What you think really does matter!!! Trust me on this one!

Ultrasound to start an IV

2008-12-16T22:57:00.000-08:00

Huh?
Yeah...That's how bad the veins are in my left arm. I had to have an IV today for my scan (normal) and once they looked at my arm, and my fuck cancer bracelet, everyone remembered me(my arm and veins actually!) And she used ultrasound to guide the catheter into the vein...with only 2 hands!
No shit!

Sorry for being brief, but I am screwing with the damn furnace right now...coldest week in 10 years and MY furnace decides to shit on me! Got it working once, now I wish I knew what I did!!!

OK..got it working twice now...may have an idea of what is wrong. Cant get a tech for several days...Duhhhh...its been below freezing for 3 days and forcasted to be a week more!!!
Oh well i have a fireplace insert and the fan still works on the furnace...plus the gas fireplace upstairs...
We will not freeze! (damn...I may have to build a fire!!!)

Tonight we went up to our local brewpub and played shuffleboard with our friends...( I was born to suck at stuff like this...shuffleboard is no different, but by god we had fun!)
Its funny how something so simple can be so fun. I lost every round, and had a blast! Both times!
That and the brewpub has half price growlers on Tuesdays...Damn if I am not a sucker for good cheap beer.
I guess I should throw the name out, 'cuz I love the place, but I kinda feel guilty about it since I put ads on my blog...
Keep in mind that I have made less than $5 since I started and I am curious to see what happens here...If it gets uncomfortable I will kill the ads...this is me, not an ad agency...

Anyway we were at Elliott Bay Brewing in Burien...and the more time I spend there the more I like it...I know it sounds like I am plugging them, but none of them know what this blog is, much less what I am doing.
Its just cool to have a place to go, I don't get out as much as I would like, and this is one place that I really like.
Sweet potato fries. They are not on the menu, all you do is ask! Need I say more.
Sorry if I seem like an ad tonight. I guess I am deflecting from tomorrow.
Tomorrow is this huge burden that I have no idea what to do with. Bear with me, as I have no idea which way tomorrow will go...will I live, or do I get to look forward to high dose IL2 and hospice(which essentially means they will make me comfortable 'till I die)
IL2 has some promise...about 10%...if IPI has not worked its magic then that's the best shot I have.
If I have been generically stable...well that would be the best I could ever hope for. That would mean that even if I had some new tumors, some of the older ones have shrunk, and most of them have been stable.
Stability is a big deal for me. This crap is so aggressive...keep in mind the first place it grew back was in my right armpit, after a dose of radiation enough to kill my shoulder joint...I can still feel the tumour grow and shrink there. any way if I have been stable that means my immune system is fired up. And I may die WITH melanoma instead of FROM melanoma.
Trust me.
I want the "WITH" option!
With the side effects that I have had...well maybe its bought me time to experiment with the newest class of drugs.
All I know for sure is I do not want Tammy to have to go through tomorrow. (correction...I have been here long enough that it is today now...
I hope this all makes sense..I am sitting here at the keyboard on the eve of what will be the rest of my life. I guess the only difference between you and I is that tomorrow I get the results of whatever...vs walking in front of a bus on the way to work!
Given a choice? I will take this. At least I have been able to tell my family and friends how much I love and appreciate them. I guess that's what life really means.
How much will a person be missed?
I have seen lots of stickers that say "he who dies with the most toys, wins"
I guess you can substitute friends for toys.
Tomorrow is an unknown...and we are both headed into it with love and hope in our hearts.
And we really do get strength from all of you...
Thank you!
I edit this with a little trepidation...only to say I apologize for being so fragmented...its chemobrain...thats all. Thanx for putting up with it!

This is one of those brutally honest posts...If you do not have the heart for it, then do not read it!!!

2008-12-15T00:45:00.000-08:00

So I guess I get to explain my melancholy attitude for the last few weeks.
Pain in my right hip.
(bone metastises)
pain in my right shoulder.
(hell who knows...radiation, toumors or just arthrititis!)
One day I am good and the next I am destroyed, Literally, cannot get out of the house for 36-48 hours, Sleeping for the vast majority of that.
I am a fat, out of shape, juicy morsel, for whatever comes along to eat me!
Not what I would want to extrapolate as being the most hopeful thing I have ever heard!!!
Its just that the only thing that makes me feel better is oxycodone. Not exactly what I want to say...maybe the scans on Tuesday will contradict what I feel, and I will be able to get past it!
Tammy and I watched "The bucket list" Friday night...
It has forever changed the way she looks/thinks about me!
If you have seen it you will know what I mean!!!
Ya think maybe that's what I feel like right now....
As Homer Simpson would say..."Doh!"
I guess I have never been one to overstate the obvious!!!
I am sure that it has everything to do with the scan on Tuesday...I mean I get to find out whether I live or die in the next year or so...And I am a pathetic wreck waiting for it!

The only reason I am stressing is that I am dissapointed in my self if I have to leave my wife and son.
I am blurry tonight, but I will write it anyway!
I am OK with all this, I just have huge dissapointements that I finaly found "the" right "Mrs Right"...and how strong that bond is...
I disapoint myself that I have to put Tammy and Kyle through this.
I know life is not fair!
I have never asked for that. Ever!
I am sure in the long run, my son will be better off with me gone, and Tammy will suffer...And I hope she can get through it as I know Kyle will! I wish I did not have to do this! To anyone!!!
more latehui mind...

Blather...

2008-12-15T00:44:00.000-08:00

"there is nothing--absolutely nothing--half so much worth doing as simply messing about in boats..or with boats..in or out of 'em, it doesn't matter. Nothing seems really to matter, that's the charm of it. Whether you get away, or whether you don't; whether you arrive at your destination or whether you reach somewhere else, or whether you never get anywhere at all, you're always busy, and never do anything in particular, and when you've done it there's always something else to do, and you can do it if you like, but you'd much rather not" -Kenneth Grahme, The Wind in the Willows

Pretty darn entertaining

2008-12-11T10:00:00.000-08:00

I apologize for the double post...
I guess Tammy and I were thinking along the same lines at about the same time, even though we were at opposite ends of town!
Oh well I won't edit it but now you know why it looks like I was repeating her! I am not quite that bad, yet!

Interim update

2008-12-10T14:48:00.000-08:00

Struggling along. That's about it for now. We are dropping my prednisone pretty fast, but I have been on it and the other drugs so long that the side effects continue to get worse. The tremors in my hands are generally worse. Fatigue and confusion seem to be the biggest issue right now, some days I have a hard time just moving. Hopefully we will be able to start tapering down some of the other meds very soon.

New scan on the 16th. I cant say I am looking forward to it, only from the standpoint that I don't want Tammy to get bad news. Her life is essentially "on hold" right now. I don't want to make it worse!
Not that I am leaving myself out of this...I hate this hopelessly waiting feeling. Like I am just waiting for the other shoe to drop. About the worst thing that could happen from my point of view is that there would be minimal changes with progression...That would do quite a nice job of keeping me on the edge of my seat for another six months.

I guess I am just venting frustration, I keep wishing there was something I could do...

Hi, From Tammy!

2008-12-10T10:55:00.000-08:00

I realize that I never post to this, it is Johnny's world. I just want to say 'Hi' to all the people that help me keep Johnny's spirits up and keep him going. I can't always do it alone, nor do I want to. We have been blessed with the most amazing friends, family and co-workers. Our 'life is good' even with all the stress, setbacks and hassles. THANK YOU!!!!

As for a quick update...We are waiting until next year to move on with the house. Right now we are planning for a big Christmas at our house. We will have both sides of the family visiting and probably friends too. It will be fun. Johnny has his next set of scans next week. We will have more info after next Wednesday. Johnny has good days and bad days. We both enjoy relaxing to a good book. I have actually started to take time to read again, and it has helped my stress level immensely.

Thank You for all of you continued support, we appreciate it every day!!
:)
Tammy

2008-12-01T05:32:00.000-08:00

A foggy dreary thanksgiving. both outside and in my mind.
The weather has been foggy and drizzly all weekend, just grey and chunky and damp.
Hmmm…same as in my head.
I have had a bit of a break in the last few weeks but the chemo brain seems to be
kicking in again and I seem to be in a fog and in a funk. Just a plain crappy mood. Unfortunately everyone around me knows it. I tend to not be very subtle( I know, shocker huh?) with my attitude!
I get so vapor locked over the little stuff, two people asking me a question at the same time? It'll freeze me in my tracks...my mind just locks up...and it pisses me off.
I just cant seem to multitask anymore. I mean I can still walk an chew gum as long as I chew between steps...
I wonder how long these side effects will be around even if I can get the cancer under control?

Oh well, too much to worry about for now. The prednisone taper is going well, we keep dropping it a bit every few days and so far I have had no ill effects. My weight seems to have stabilized and hope fully will start decreasing, and some days the fatigue is almost gone, or seems that way to me, and I can get out of the house and go for a walk without being wiped out for two days. Although exercise does make the neuropathy come back, but not to the point I cant live with it.
My shakes have been coming back a bit too... but overall I think things are improving.

We had a great Thanksgiving. My stepsister makes a huge family dinner every year and then Tammy and Kyle and I go to my parents house at Ocean Park. I spent last year at home as I was between rounds of Bio-Chemotherapy and in no condition to travel. This year was actually really nice. I did not get to spend enough time with my family, but it sounds like some of them are going to come visit us for Christmas this year! Now that would be cool!

I now know how my Dad feels. He is 76 and does not travel very well or drive very much anymore. I understand that now better than I ever wanted to. I am to much of a control freak to admit it anywhere but here, but my driving worries me. Its not that its that bad (maybe it is) it is just that I know I make stupid mistakes that I never used to make, lapses in attention maybe. I still think I drive better than most (what guy does not), but I know damn sure that I am not at the level I was and I wonder if it will ever come back.
I have applied for disability retirement, and although I should have planned better, I think we will survive. I wish I had purchased life insurance a few years ago! Or disability insurance!

I refuse to dwell on the past though, and there is still a future in front of me. (better than a frontal lobotomy!!! Christ, did I say that out loud?)

latest update

2008-11-22T06:32:00.000-08:00

All my colon biopsies are back and finally looking good. I am continuing to slowly taper the prednisone down (I will be at 60mg a day today!!!) to 40mg a day, but they are going to keep everything else stable for now. If in fact they can get this colitis thing under control, then I am back to dealing with chemo brain and the cancer itself. The one tumor and one Lymph node that I can feel, well the node seems to be gone, and I think the tumor is just scar tissue, I mean it was in the scar where they took my nodes out, and it has shrunk to the point now that I cant really feel anything but the scar!
Hopefully the rest of my tumor load is responding the same way.
Other than that we are in kind of a holding pattern until scans in December. Working on getting the house ready to sell, and trying to keep our head above water!
I guess the scan results will help guide us in respect to what we will buy. Whether it will be a cheaper house, or a condo for Tammy. Personally I like the idea of a smaller and significantly cheaper house...with a decent garage or shop...but that's just me.
I know Tammy would be much happier in a condo if I am not around, so that's kind of the direction we are leaning. Lots of stuff out there when we can sell this place.
Hopefully we will come out OK on it, we kind of took it in the shorts on closing costs when we bought it, but other than that we are in good shape and it should be worth more than it will cost to sell!
I apologize for not keeping up with the blog. Between the bad days and appointment days (Usually wind up wasting the good days at appointments!) I have not been very creative lately.
Due to the budget, we have not been out on the boat. And I have fatigue (read that I am a fat bastard) bad enough that I really cant do a whole lot right now...I wind up pretty thrashed by the end of the day. The good news is between tapering the pred and tweaking my sleep meds, I have finally begun sleeping again and my weight has leveled out at just under 210. I know I am six foot tall, but trust me...I do not carry it well. I was thinking of having Tammy take a couple of pics of me with no shirt on just to compare to a year or two ago...and maybe for future reference.
My body definitely ain't what it was!
Like I really care any more what I look like, I just want to be able to do what I used to do! Hopefully I can get back into shape as the drugs taper off!

That's my rambling for now!

This kind of sums up my life for the past six weeks or so!

2008-11-22T00:26:00.000-08:00

And I am blatantly stealing this from a post on Sportfisherman.com!
Its just too applicable right now, I have done 4 of these (I think...I am trying not to remember!!!) in the last six weeks...minus the prep. Trust me. The prep is minor! I remember almost all of the last one...thats right, almost ALL!
Not something you really want rattling around in your head!

Any way here it is!

Colonoscopy drama....
I saw this on another site, but it had me laughing my arse off!!If you've had one you'll understand and if you haven't, your time is coming. This is from newshound Dave Barry's colonoscopy journal:
I called my friend Andy Sable, a gastroenterologist, to make an appointment for a colonoscopy. A few days later, in his office, Andy showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis . Then Andy explained the colonoscopy procedure to me in a thorough, reassuring and patient manner. I nodded thoughtfully, but I didn't really hear anything he said, because my brain was shrieking, quote, 'HE'S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!' I left Andy's office with some written instructions, and a prescription for a product called 'MoviPrep,' which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America 's enemies. I spent the next several days productively sitting around being nervous. Then, on the day before my colonoscopy, I began my preparation. In accordance with my instructions, I didn't eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor. Then, in the evening, I took the moviPrep. You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons.) Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes - and here I am being kind - like a mixture of goat spit and urinal cleanser, with just a hint of lemon. The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, 'a loose, watery bowel movement may result.' This is kind of like saying that after you jump off your roof, you may experience contact with the ground. MoviPrep is a nuclear laxative. I don't want to be too graphic, here, but: Have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet. After an action-packed evening, I finally got to sleep. The next morning my wife drove me to the clinic. I was very nervous. Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage. I was thinking, 'What if I spurt on Andy?' How do you apologize to a friend for something like that? Flowers would not be enough. At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the heck the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked. Then a nurse named Eddie put a little needle in a vein in my left hand. Ordinarily I would have fainted, but Eddie was very good, and I was already lying down. Eddie also told me that some people put vodka in their MoviPrep. At first I was ticked off that I hadn't thought of this but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house. When everything was ready, Eddie wheeled me into the procedure room, where Andy was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Andy had it hidden around there somewhere. I was seriously nervous at this point. Andy had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand. There was music playing in the room, and I realized that the song was 'Dancing Queen' by ABBA. I remarked to Andy that, of all the songs that could be playing during this particular procedure, 'Dancing Queen' had to be the least appropriate. 'You want me to turn it up?' said Andy, from somewhere behind me. 'Ha ha,' I said. And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like. I have no idea. Really. I slept through it. One moment, ABBA was yelling 'Dancing Queen, feel the beat of the tambourine,' and the next moment, I was back in the other room, waking up in a very mellow mood. Andy was looking down at me and asking me how I felt. I felt excellent. I felt even more excellent when Andy told me that It was all over, and that my colon had passed with flying colors. I have never been prouder of an internal organ. ABOUT THE WRITER> Dave Barry is a Pulitzer Prize-winning humor columnist for the Miami Herald. On the subject of Colonoscopies...
Colonoscopies are no joke, but these comments during the exam were quite humorous..... A physician claimed that the following are actual comments made by his patients (predominately male) while he was performing their colonoscopies:
1. 'Take it easy, Doc. You're boldly going where no man has gone before!
2. 'Find Amelia Earhart yet?'
3. 'Can you hear me NOW?'
4. 'Are we there yet? Are we there yet? Are we there yet?'
5. 'You know, in Arkansas , we're now legally married.'
6. 'Any sign of the trapped miners, Chief?'
7. 'You put your left hand in, you take your left hand out...'
8. 'Hey! Now I know how a Muppet feels!'
9. 'If your hand doesn't fit, you must quit!
10. 'Hey Doc, let me know if you find my dignity.'
11. 'You used to be an executive at Enron, didn't you?'
12. 'God, now I know why I am not gay.'
And the best one of all.
13. 'Could you write a note for my wife saying that my head is not up there?'_________________
__________________Capt. John Mallettecaptjohn86@yahoo.com http://www.myspace.com/captjohn86"ALCOHOL,TOBACCO,AND FIREARMS should be a convenience store, not a government agency".1(910) 934-2628

I was writing an email and this just kind of came out

2008-11-12T00:07:00.000-08:00

and it kind of sums things up...so I thought I would post it here and add a bit to it.
I was talking about how I feel and how I am doing.

"Well it is what it is. There is still hope that the immunotherapy will continue to keep things stable AND retard the growth of new tumors. It is very possible and that's what we are planning. There is just so little data, and I have had such severe side effects, which means even less data...on top of the fact that they have not really determined a time frame for success or failure yet, concerning any immunotherapy treatment...all they really know is the longer they keep track of results = a better out come.
I look at it like this....through out history, anyone who has come down with a terminal disease has hoped that technology has advanced far enough that they will be cured before they die.
I do not expect a cure. But I have a hell of a good chance of continuing to live and managing this as a chronic disease. So if you look at it from a human history stand point? Well..." it is not all bad...I have as good a chance , maybe better, than anybody in history that's ever had stage 4 metastatic melanoma!
"Fortunately Tammy and I are still happy (although she is pretty stressed), and above all we are still in love and life is good!
I think that's what really counts in spite of the adversity!"

And that my friends is what really counts. In some ways getting a terminal disease has made me a hell of allot better! In some ways worse!
I know beyond a shadow of a doubt that I am happy!
And I KNOW that the short time that I have had so far with Tammy, truly a soul mate, has made everything worth it! I hope she feels the same. And I am pretty sure she does...we are still dopey kids in love...happy in spite of life hitting us in the head with a hammer!
yeah, selling our dream house sucks...but we still have the love for each other, and of our family and friends!
Trust me on this, that is no small thing!
It is everything!
My cup runneth over...even if it has a bad word on it!

ok so its been a couple of weeks...

2008-11-10T23:13:00.000-08:00

And I wish I could say that its been a good two weeks.
I got to have dinner with a friend that I have not seen in years, and That was great.
Want to have them over for salmon...
I wish everything else could go so well!
My results from the last scan, well I have been continuing with major colitis side effects.
Can you say I hate flexible sigmoidoscopy's(sp)!
So does Tammy. There are just some things that your wife should not have to hold your hand through...much less every other week on average! There are just some places that you should never put 3 feet of little flexible camera!!!!!!!!!!!!!!!!!!
The other big blow is...we are going to have to sell our house.
We bought it a couple of years ago because it was our dream home. We did everything right, we did not do an ARM or anything wild, we just bought as much as we could afford on a fixed rate loan. And we sold our old place at the top! Bought this place the day the price dropped 60k!
It just goes to show, there are some things in life you can't plan for?
I guess in a way we are lucky. We should be able to sell for what we owe. And our credit is way up there, so we should be able to buy for very little down and the difference in house payment will make up for my loss of income...
I guess that's what it all comes down to.
I know now that I will probably never go back to work. I am pretty sure that whatever I do I am not going to be around to help Tammy with all the things that go along with getting older and living through the prime of life.
Hell maybe I will get lucky...but the odds are not in my favor and I have to plan for Tammy and Kyle.
Can you say "frustrating?"
I know, with my loss of income and complete lack of savings, that we have to downsize our mortgage. And that does not even take into account the continuing issues I am having with the immunotherapy trial. The fact that I am in a very small percentage of those that are having very severe side effects gives us a glimmer of hope. Most of the people that have side effects of one sort or another are the ones that this stuff works for. Maybe the fact that I have had major side effects means that I will have major benefits...hopefully long term?
We just do not know right now.
So if I have not updated in awhile you now know why. Between the steroid load and other drugs that I am taking, am lucky to be conscious at all. Then add in that the steroids and other shit that has me to the point where I am averaging 3 hours of sleep a night, and I have the shakes so bad I can't even read without drugs...much less drive, I do not go very far at all in the car anymore! I am lucky to be able to do anything on a good day, you really do not want to know about the bad days, remember the rat I was talking about, trying to chew his way out? Today there was 2 of them. and this is after 2 weeks of no symptoms. Dropping the drugs a bit, and WHAM!!!!! Little mister Wharf Rat is back, with a friend
As an aside. My job consists of multi tasking. For example going down the freeway 20 feet wide with state troopers on one channel, pilot cars on another channel, smoking a cigarette, drinking coffee out of a thermos, and giving the dog a treat while listening to two AM channels for traffic alerts at 50mph, and digging in my lunch box for cashews, and talking to one of our other trucks on another radio all at the same time!
Now I am lucky to find my way home from the boat! 8 miles! In my little car!
Yes we have decided to keep the boat.
Its paid for and its one of the things that we cut back on really hard, so we could keep and enjoy it. It, along with diving, is the love of our life. I probably will never dive again. But the boat is paid for and costs us nothing unless we use it. So we have decided to keep it. Even if we sold it in this market, it would only give us 10 or 15 thousand...which might get us through my life...then Tammy would be left with a mortgage she cant afford and no boat.
I have been helping her and she can hook the pickup up to it and launch it now! She is not comfortable with it...but she can, and will, do it!
That boat means a hell of a lot to both of us, and while it might not be the most sound financial move, it is the one that keeps hope alive for us!
That is the part that I wish I could do better at. Keeping the hope alive.
I look at what I have done so far, which is outlive the numbers/prognosticators.
I guess I see the deterioration in my body and I don't get a reprieve.
Come my next scan I have a hell of a good chance of having the cancer recede a bit! The side effects are pretty severe, there is no doubt about that, but I have already lived longer than average. Granted, at my age the bar is pretty low, but DAMMIT i am doing better than average.
I have some goals too!
I want to go fishing in Alaska next year, and the best friend I have ever had has offered to take me! Trust me this is a trip no one would miss!
I want to take my son big game fishing. And I have had offers to do that too...from complete strangers...I guarantee if he catches a marlin I will cry for weeks...
The list goes on.
I hope my life does too!
I am just too damn fortunate to let go now!
Now you know why I have not had the guts to update this for awhile. Life and cancer seems to be crushing in and I get overwhelmed more and more.
I am not used to not being in control!
This shit sucks and I have to figure out how to deal with it! And trust me my friends, when you are backed into a corner, and staring death in the face, options are worth their weight in gold.
I wish I had better insight...
Hell I wish I had no idea what this is all about!
And I know, beyond any shadow of doubt, that I never want you to know any of this!
In any way shape or form!
I know of no way to say it with any more strength or conviction!
This is what skin cancer will do to your life...christ I am 1/8th cherokee, and all you have to do is see a dermatoligist. And this will NEVER happen to you!
I am done preaching...I am told I should do more...
I think there is one thing and one thing only to say...and I am sorry if it offends you, but I am offended by dying at 40!
FUCK CANCER!

Stumbled across some pictures.

2008-10-30T10:06:00.000-07:00

Looking for something else. This was our first cruise to Gig Harbor with our Yacht Club in January 14, 2007. 27 degrees and about a quarter of an inch of ice on the water. Had to scrape the snow off the boat! And break a path into the slip and then pull back out and back in in the road we broke. It was weird running in ice like that, when I would let off the throttle the boat would stop, like brakes on a car...it was pretty cool! We ran down in the dark on Friday night and it was kind of surreal breaking ice in the dark and waking up to this. I know its not that big of a deal back east, but Seattle almost never sees ice on the sound!
This is from the trip back, it was a little warmer on Sunday. I think it got up to 35 or so. But it was so clear and calm!

And we don't usually see the ferry's running north and south between Des Moines (in the background) and Tacoma. Just pure dumb luck to get a shot like this! I am assuming it headed to the Point Defiance to Vashon route to replace one going back to Eagle Harbor for work to be done on it.

Just thought Id share some random pictures. If you like I can post more. Beats whining about being sick.

2008-10-28T17:44:00.000-07:00

I got my burgee today from iboatsnw.com a forum that i really like...and they took it upon themselves , or Mike did, to send me something extra.
Now i am not kidding when I say my cup runneth over!!!!

It took me a minute to figure it out, It was a plain black cup but when the light caught it I could see the words! Then it dawned on Tammy that we had to put something hot in it. TOO COOL!!!

Got a little good news today, I am doing well enough that they are going to drop my predisone to 75mg a day and I don't have to get another flex-sig this week...I am finally getting some improvement...although I know now I will not be going back to ipilumab(mdx-010), so that is kind of a bummer. I should see some improvement at the six month mark though. I am keeping my fingers crossed!

2008-10-28T17:37:00.000-07:00

2008-10-27T02:05:00.000-07:00

Three tries for one IV. I am glad I cannot show you pictures of the 7 chunks they took out of my intestine...
Or the 8 last week!
My wharf rat is back, and he is still trying to chew his way out...yes that is what it really feels like...
Sure beats the alternative!

I have gotten so fat, that now it is hard for me to do many things....
We are hoping to taper the steroids this week...
They have so few cases like me that they are struggling. Sounds like I am one of just a few having this sort of problem...that is the price I paid to be part of a trial though...
It is a compassionate use trial, and we knew the risk going in...I could have done nothing and well we know how that ends...
I will take that, and I think Tammy is pretty happy with OUR decision too!

To top everything off today I managed to try and run a screwdriver through my right hand. thats the one with no lymph glands that I am supposed to be taking care of. And not cutting it and all that...I am sure this will go over well with all the immune supression drugs I am on too!

long crappy week

2008-10-21T00:44:00.000-07:00

Well I already talked about Wednesday. Three feet of camera....yeah. Eight biopsies. Eight big chunks they ripped out of my insides! Felt like it too! Saturday I finally broke down and once we got to Bremerton on the boat, I dove into the oxycodone. I hate being stoned on it, but Christ it makes ALL the pain and cramping go away. I know its only 5mg 2 or three times a day. Its just one of those lines I did not want to cross. A line that means this crap is moving forward whether I want it to or not.
I got to cross another one of those lines today. I finally have a lesion in my hip bone. I really wanted to keep it in soft tissue...oh well, My immune system will track it down wherever! Just have to get those hunter killer cells trained and up to speed on the new program!!!!!
Speaking of which, we got scan results today. My head is still clear. My lungs have a bunch of new little tumours and my liver is kind of staying stable. Right axilla has shrunk a bit.

Now what all that means is that we got about the best news we could have today! Yeah I have over 20 tumours in my lungs now but they are all small. AND allot of the ones in the right lower lung have decreased in size.
That my friends is a big deal.
This stuff is really aggressive!
Just staying stable on so many of the little shits, is a big deal!
We kind of expected some new ones to show up...and as long as most of the older tumors stayed stable, then I am responding to the "IPI" better than we could have hoped for. This stuff is not as long a shot as bio-chemo or radiation or even Interferon...I had about a 30% chance of it working at all...
And the results are pretty damn good!
The side effects suck!
Like I am going to complain...NOT!!!!!!

Had a great time on the cruise this weekend. Caught a bunch of squid, and had kick ass calamari! Bremerton has a great new marina, and if I was not so stoned on Oxycodone the whole time I would have posted some pics...
As it is anything after I take my drugs in the evening is pretty much hit and miss. Between the ambien and the trazadone, its almost like a blackout drunk...
And my communication skills are about on that par!
I wonder what Doc would say about diving on Oxy?
After the diaper thing...well...
Blew another propeller hub out on the way home and had to run all the way back at about 9mph. I dropped Tammy and Kyle off with a friend and did the 2 hours back to DesMoines by myself. When we stopped at Blake Island to transfer I went ahead and pulled my prop to see if in fact it was the hub.
Yes it was, It was pretty obvious! What was also obvious was that #1 I don't have a spare! (cuz I am stupid!!) and #2 when I pulled the prop nut of and went to lift the prop off the shaft I forgot about the lock bushing between the prop nut and the prop...basically the spacer that locks the nut on and keeps the prop from coming off the shaft when you put it in reverse!
Handy little piece to have!
Thank god the dock was not to crowded and I could come in using nothing but forward and neutral!
The State park volunteer at Blake Island was quite impressed when I took a 2 d-cell mag light and made a prop spacer out of the focus housing...it just happened to be the right size if I put the prop nut on backward...tough to do with a nylock(self locking) nut!
It going to the shop tomorrow and we should be back in the water in a day or two!
Squidding has become a priority! Little buggers are way to tasty!

Drugs are kicking in now and I will soon be unintelligible...I am going to hang it up now before my face goes numb...
Hope I can sleep past 4 or 5...

2008-10-17T18:49:00.001-07:00

All prepped and ready to go for morning

Crappy week!

2008-10-17T14:29:00.000-07:00

Well the colitis thing is still flared up. Had a scope done on Wednesday and the took 8 biopsies and said it (yeah, my colon!) looked pretty inflammed. Tammy got to watch the monitor while they did everything. Its great knowing your wife loves you enough to be there for you while you are lying on your side getting 3 feet of tube shoved up your... well...yeah!
She obviously loves me!

They have upped my pred to 80mg a day and added another steroid, plus a couple immunosuppressives,, and some other things I am not sure what they are. Tammy keeps track of all that. I just know she is not very happy right now, as they are desperately trying to keep me out of the hospital to get this cleared up. So far it hurts all the time, feels like something trying to chew its way out of me (something small, I'm not talking Alien here)!

I had a Ct scan done today and get the results Monday. This is the one that will hopefully show us some good news. Note to self, Barium contrast and colitis do NOT mix well. and combine to find the furthest way out of your body possible. Being only one bathroom in radiology that I know of, and everyone else doing their scans at the same time...
I need to find another bathroom on the second floor!
I think an elevator ride would have been embarrassing!

Enough of that drivel.

We are going on a cruise with the club to Bremerton this weekend. Taking Kyle and we are going to get away overnight. I cant get very far from a bathroom, and since there is one on the boat I figure I can make it!
I will try and post some pics this weekend.

Something I want to share

2008-10-12T23:18:00.000-07:00

I have to preface this entry...its getting late and I have taken my drugs...it may go downhill from here...and after today its a pretty easy slide. I have had better days...I have had MUCH WORSE TOO!

I don't want to bitch...just cluing you, the venerable reader, in!

Tammy made a major decision this weekend. We have been talking about how I want to give something back. To help someone else going through this in a way they may not even know they need. This is a road we have travelled. We are the most fortunate people in the world! We are surrounded by friends and family that you could never dream of! It has been a "godsend" to us, and we know stories of those that travel this road alone! We have met them, sometimes not speaking their language. In the Chemo ward! All alone. Their family having sent them to the U.W. with their life savings, hoping that the doctors here can do what those in Central America cannot. Walking by his room, all we wanted to do was to talk to him...be friendly, let him know he was not alone....

We don't speak Spanish...and actually I think it was Guatemalan.

That has been a burden to us, and I still don't know what I can do...but my lovely and ever supportive wife made up her mind that she was going to do SOMETHING!

After much research, and talking to Seattle Cancer Care Alliance and the American Cancer Society, she decide to donate her hair. The only thing I can think of is.. For those who this will make a difference for, this is the difference between being able to go through the worst time in your life with dignity, knowing that someone cared enough to sacrifice their personality so you can have hair, AND PRIDE, while the doctors and drugs try to kick the shit out of you! And trust me on this, the hair did not bother me, but I can totally understand how it could make a difference for someone. And that difference may mean that some one has the strength to go the distance. Maybe someone who is on the cusp of giving up...and those 12 inches of hair will give them the proverbial shot in the arm, steel their reserves and make them one of the few who KICKS THIS SHITS ASS!!!!!!!

Sorry if you don't like my coarse language...I think there is no better way to put it!

None of this has anything to do with fair!

Tonight I stand in awe of the woman I have loved for over seven years. The woman who did not ask for this trial...and really deserved not to have to deal with it!

But she is still by my side, as is my son and all our family and friends and even all of you!

I AM MAKING PROGRESS! We want to do more in this vein...I want to give back, help, do something...and I have the woman I love to look to for inspiration!

My Cup Runneth over!

That is a 12 inch UOP ruler...and yes it is very , very different. And I love it!!!

I really want to do something too...I hope I can live long enough to maybe set up a tournament(derby out here on the left coast).

Now you know where my inspiration comes from!

I was stuck at home all weekend due to side effects...so she recruited my son to be her partner in crime.

How fortunate does that make me?

In a way I feel like I cant carry my weight anymore. I know I have no choice...and I don't really take it that personal...BUT...the undercurrent is there, if you know what I mean?

The upside is I have the most wonderful son and the most incredible wife a man could ever ask for!

Welcome to my life!

I have one simple question.

How in the hell can I complain about this?

2008-10-11T14:55:00.000-07:00

Today did not work out the way I wanted...
Got up feeling great, Ready to go try an easy dive and started having major colitis symptoms, really painful and no fun at all.
Not something you'd really want to be cooped up in a drysuit with, cramps aside...
So it has been another day of laying on the couch and running to the bathroom, sleeping through the side effects of some of the drugs and generally being worthless!
Feeling a little better this afternoon. Its frustrating though. I want to get off the prednisone and I keep having intermittent bouts of colitis. The weight gain alone is enough to drive me crazy, and all the other side effects from 60mg of this stuff every day for the last month.
All in all I guess its really not to bad, I don't have this every day and though we won't know for sure 'till the 17th it seems like the "ipi" is keeping the ugly stuff at bay...

New personal best last week at the Oncology weigh in...
204
I am not skinny anymore!

Sorry i just had to post this...

2008-10-06T00:05:00.001-07:00

its 2:30am

2008-10-04T02:38:00.000-07:00

and I am just done reviewing blogs for the week. Dammit, I hate cancer! Duh! More deaths, more lives destroyed.
Jesus...I will say no more on that!

OK, an update on me. Not much to update really...I have been trying to work on the boat between episodes of colitis and insomnia, and it seems that tumours are still shrinking(the ones I can feel ARE!). We don't really know for sure yet, but I will be having some Ct scans and an MRI next week to see if we can get a handle on pain management.
I am hoping that most of it is just that I am a fat bastard now (thank in no small part to a months worth of 60 to 80mg of prednisone a day) and not because of tumors elsewhere...
Other than that I am just trying to manage the colitis, and have not had any more side effects that I can directly relate to the MDX...maybe this stuff will let me live with this crap for awhile. Hell, it looks like I get to live out this year! That is a bonus. Its amazing how your priorities change when you know you don't have very long!
And they change again when I may get a few years reprieve!!!!
With my wife, family and friends I really am the luckiest man in the world...without a doubt!

Good kind of update...

2008-09-25T03:18:00.000-07:00

Its good because there is nothing to really update.
I am still on the prednisone and still having some pain issues. The one tumor that I can feel still appears to be shrinking (although at this point there is not much left of it!) and I am still gaining weight. 197 pounds now. That is one pound shy of gaining 60 pounds since chemo! Less than a year. Granted I was about 30 pounds underweight when I got done with chemo in January. But that's still 60 pounds in 10 months. The prednisone helps a lot too (NOT!)
My regular Doc gave me a cortisone shot in my right shoulder last week. I have been having a lot of pain in it and once we looked into my records I have had bursitis in the past and thus had an MRI on it in the past. So with the existing degeneration and what is probably an autoimmune arthritis response on top of the lymph node surgery and radiation exposure...well ...its no wonder it hurts!

I used to joke about spending the first half of my life making the second half miserable. But at least I had found something I was good at!

It used to be funny...now its so true its just kind of sad!

Anyway the consensus today was one more week at 60mg of prednisone a day and if the colitis symptoms continue to stabilize I will be able to drop to 40mg a day. Thyroid labs where a bit screwy today too. Nothing to get excited about, just one more thing to watch. And I am going to try and tweak some meds to lessen some side effects and still maintain benefits. A couple of more weeks out of work at least. That's almost getting harder than anything else right now. Although I am getting a few things done around the house and on the boat, most of the time I feel pretty good...and therefore kind of useless that I can't work. I know the reality...but that does not make the feeling go away either.

This definitely means I will not get my fourth dose of MDX. It also seems that I may not need it. From what I have read and heard it seems that for those that have a response to IPI it is within the first dose or two and once the process starts its just a maintenance thing. I am guessing that in the future if I start growing tumors again I could get a maintenance dose and push things back again. Of course that is speculation on my part and would also depend on the auto immune side effects and whether they would get worse or if they may lessen with more exposure to the MDX.

And on top of all that we have no idea yet what is going on inside. I don't get a scan until the 17th so we are assuming that at least some of the tumors inside are shrinking. It would not be out of the ordinary for some new ones to crop up too. But if this stuff works the way it appears to be, the new ones would eventually start to shrink too. And I don't think I have any that are large enough yet to worry to much about bleeding. So we are just at wait and see right now.

On the lighter side. Could not sleep Tuesday morning. Was up by 5 and decided to take our dinghy out and go fishing for awhile. Our dinghy is a 10' Avon inflatable with an 8hp Evinrude and will run forever on two or three tablespoons of fuel. Beautiful calm morning with no wind and a decent tide change, what the heck, a nice morning on the water and there are a few (very few) Coho around.
1/4 tank of fuel in a 6 gallon tank, that's enough for at least half a day...and off I go. Trolled for about an hour out in front of the marina and was kind of following the jumping bait out in the middle of the sound when...ker sputt! Engine died! hmmm gauge in the tank still says 1/4. Pick the tank up though and there is a different story to be told. A story about a moron adrift in the middle of the traffic lanes in a 10' inflatable with no fuel!
Actually not nearly as bad as it sounds. I had my cell and my handheld VHF AND oars! No container ships or tugs anywhere!
About 3 miles. That's about what I figured out when I got back to the boat at the dock and pulled my route up on my gps. Dall's porpoises even put in an appearance on my way in. Nice day for a row!
As you may have gathered from earlier in this post, I have turned into a fat out of shape bastard! Oh and there are no seats in the dinghy, although I folded my life jacket and coat up into a makeshift seat and was able to get my butt a couple of inches up of the floor while rowing!
Oh yeah, soft bottom inflatables really are not very efficient at moving through the water...nor do they have a lot of directional stability with a flat bottom and no keel!
Oh well if I am going to be stupid enough to trust the fuel gauge on an outboard tank I am man enough to deal with the consequences.
Needless to say my back is out and I have spent the last 36 hours in pain. See what happens when I can't work?
want to add insult to injury? I had 4 different appointments today and had to explain to each and every one why I was hobbling around clutching my back and stoned on pain meds!
And after hearing the above story the amount of sympathy I got was right at 0(zero)...chuckles and other expressions of mirth, on the other hand, were in abundant supply( even from me!)

2008-09-18T15:03:00.001-07:00

A pic of Mt rainier for Robert the Rower! Taken from our boat over by Vashon Island looking East to the Port of Tacoma.

A few pics to share

2008-09-18T13:55:00.000-07:00

Had a few pictures I took while fishing Tuesday afternoon. No keepers, but, well, that's what seems to happen when you go fishing with me!

The sun setting over Maury Island
The Des Moines Marina looking toward the south end of the Olympics.

We caught lots of fish but nothing worth keeping...I will do a fish pic post here soon just so you can all see some of the humorously small salmon we have been catching!

Had dinner with a friend from MPIP last night(mpip.org Melanoma patients information page).
It reminds me how lucky we are to have family and friends surrounding us. He traveled halfway across the country to find out the trial was closed. Damn that's frustrating! He will be heading for Bethesda next and they WILL take good care of him.
I know the two big trials right now are closed. That's good and bad. Its good because they are having success with both and they are running out of production capacity and are on the verge of getting FDA approval.
Its bad because for some they don't have the time to wait for the approval process. How frustrating is that. There is something that has a 200% higher chance of working than anything else that has ever come out...but you cant have it right now...even though your dying, because the drug company has to switch gears and get into FDA legal production mode.
Don't get me wrong, I am not bemoaning all this. Hell I am on a compassionate use trial. Which means since I was dying anyway I could be a guinea pig for the drug company. And its working for me. I just wish there was some way for him to have access to the same opportunity.
Its strictly a timing issue. Unfortunately Melanoma does not give you much timing flexibility.
Want some good news? I know he will do fine, his wife is his biggest advocate. And I can tell you from personal experience how important that really is. She will find a way!!!

Fishing Saturday

2008-09-15T07:43:00.000-07:00

7 lb 11oz Coho...great day to be fishing. Weather was awesome. Lots of little fish but this was the only keeper.

Sunday I spent on the couch with a migraine headache. I never had one before all this, so I will blame chemo. I have had three this year. Really not fun!

Side effects are still under management for the "ipi" and I am down to 60mg of prednisone a day for now. I was supposed to get my third dose today, but it looks now like I won't get the 4th dose either. I wont get kicked out of the study, as it goes at least through my first CT scan. If that shows tumor shrinkage then I will probably stay in the study and they will figure out a maintenance dose.

Now the good news.

My tumors are still shrinking. Dr could not even find the lymph node that was growing under my right arm this time!!!!

WooHoo...

It ain't a cure yet and the side effects are probably far from over, but its a hell of a step in the right direction!

He is going to monitor me every week here for awhile and try to manage symptoms a bit better and hopefully I will be able to go back to work soon!

Until then there is fishing!

2008-09-07T02:42:00.001-07:00

Another day at the Tides...
nachos sun and beer!
life is good

A great life

2008-09-06T01:34:00.000-07:00

I am sitting up right now due to the 80mg of predinisone that I am taking daily to combat colitis!
I wanted to re-iterate what I said in the last post.
I have a great life. Even if it gets cut short I still got to live a life full of love and affection from more friends and family than I could ever possibly deserve!
Even if I beat this crap now, I know that it will be back...
I don't care...I have more love in my life than one could ever possibly plan for!
And because of my tenable position, I am doing my best to make the best of every minute I have! I need practice! But I am jealously hanging on to every minute!
I am not very religious in the organized sense...but I do believe in Jesus and I do know that enjoying life is what its all about.
I wish I could have figured this out twenty or so years ago!

Fishing this evening

2008-09-02T22:23:00.001-07:00

After the doctors appointments I went fishing this evening. Caught one shaker (small) Chinook and a great shot of Mt Rainier!

And by the end of the night we managed to hook a dogfish too! Mini shark anyone? On a lure no less...no bait involved!
Yes he was turned loose unharmed! They have some nasty spurs on 'em though. Right at the front of the dorsal fin and the adipose fin. They can leave a nice big hole in your arm or hand!

Time to get back to work and life. I cannot get across how uplifting it is to have a little hope! The fight is not over by a long shot, but I tell you what, I have the energy to go several more rounds...and three or four weeks ago I thought I was worn completely out!
I have a good life.
I am fighting to live it!
Thank you all for your love and support, I could not be here without it!

Couple more pics from this weekend

2008-09-02T22:11:00.000-07:00

This is the rock in front of the house

And this is the driveway...not much of a walk to the beach. Sleeping with the sound of the surf at night is pretty rough too!

We are back and fully recharged now. Doc appointments went good. No major changes yet. I will miss my next dose of ipi. But if everything settles down then I should get the dose that is scheduled #4. The side effects basically mean that this stuff is working. The colitis is a function of my immune system going hyper and attacking my body. The good part is it seems to be attacking the tumors as well. The one under my right arm continues to shrink and I cannot find the swollen lymph node there any longer!

To early to tell, but it sure seems promising to me!

Weekend update

2008-09-02T10:43:00.000-07:00

Had some pictures from this weekend that I wanted to share.

Haystack rock at Cannon Beach, OR. The weather could have been better but at least it was still warm enough to be comfortable. Mid 60's most of the weekend.

This is zoomed in on the little rock to the left of the main rock in the previous pic. The whole rock area is a protected preserve for birds. Its not hard to see why.

Sir Licks Alot and his Kyle in the surf!

I took this with my cell phone camera looking out the front window at haystack rock from my brothers place.

I have to go for now. I will try to get a few more pics up of the weekend when we get back. I have an appointment with my study doctor to get checked out for my colitis and see what the plan is going to be with the steroids and all that!

More side effects

2008-09-01T21:35:00.000-07:00

Well we went to Canon Beach this weekend and stayed at my brothers vacation home. Looks right out over haystack rock. Wonderful place.
Friday night I had major stomach cramps and diarrhea...made some phone calls and got a prescription locally. Colitis, common for this trial, and I am now taking 80mg of prednisone once a day. Had some bleeding Sunday and spent some time in the emergency room in Astoria OR. Got tested and did blood work. Nothing to get too excited about as long as it does not get worse. It has not. And I will call in in the morning and see what the plan will be. I have heard lots of horror stories about this steroid stuff...Tammy has already locked up my skillsaw and hammer so I can't do any midnight remodeling jobs!
The tumour under my arm is continuing to shrink!
Everything else is minor!

Friday Aug 28th

2008-09-01T21:34:00.000-07:00

My journey has been punctuated by high highs and low lows. That is the cancer journey. Staring at your mortality and not knowing whether you are going to come to terms with mortality or not. I finally came to the conclusion that I have the easy part. I suffer then die. I am not the one left to pick up a shattered life, I am not the one who has to go on with out a father or husband or bury a son. Of course that does leave me as the one who lets everyone down...not that I can do much about it. Nonetheless I am still the source of the disappointment.That frustrates me! I want to fix everything and make it all better.The up side is we have all taken a step back and are making an effort to enjoy what we have right now! Of course all this being said, right now I have a far different attitude than I did a week ago! With tumors and lymph nodes shrinking I have hope. And hope is a powerful attitude adjuster...I dare not hope for a cure, and maybe this will wind up being nearly as much of a curse as the melanoma. But right now my family, friends, strangers that I have never met and myself have hope!That’s powerful!

2008-08-25T11:39:00.001-07:00

the infusion room. A little taste of good news today. The lymph nodes under my right arm and the tumor at the surgery scar are shrinking! Still have a long way to go, but we are starting to get past cautiously optimistic and are now moving toward hopeful!

2008-08-24T15:18:00.001-07:00

fishing hard

2008-08-23T22:45:00.000-07:00

Sir Licks Alot after a long day of fishing and a big dinner with lots of attention (and toys)

Another weekend spent on the boat...

2008-08-18T20:26:00.000-07:00

With family and friends, eating, drinking, catching fish and generally rousing the rabble!
Not much to say tonight. Tired after a long day. Still feeling pretty good, although I am starting to get some pain around my right shoulder. May just be from the radiation as I have had pain there for awhile, and I don't think any of the tumors are large enough to cause pain yet, it is getting worse though.
Other than that, physically I feel great. Mentally I am thrashed. Staying positive though, and just trying to make the best I can with what I have.
I think I am more in love with Tammy now than I ever have been! Never would have thought that was possible!

2008-08-16T16:14:00.001-07:00

dock party...fresh salmon and fresh crab.
surrounded by friends! Life is good!

Nice easy weekend

2008-08-10T22:55:00.000-07:00

Had my son this weekend. Went fishing Fri afternoon and Saturday afternoon. Not much action and we only stayed out about 3 or four hours each day. He wanted to go home early today so when I got back I had to get the boat back on the trailer. So Sir Licks Alot and I went fishing for a few hours. No keepers but we caught a couple shakers...Nice day on the water.
Looking out at the water tonight during dinner and it has turned to glass...hope I can get off work early enough to fish tomorrow!

Everything is going good

2008-08-09T09:30:00.000-07:00

First infusion on Wednesday was uneventful. Trying to start an IV was a pain. The chemo has destroyed my veins, I used to have lots of big veins standing out in my arm and now hardly anything, and the ones they can find like to roll. Finally got it but damn it was sore!
No real side effects yet and we really don't expect any...this is not a chemo treatment. I am getting human antibodies to try and fire up my immune system. Any side effects would be a result of my own immune system going into overdrive. Theoretically this stuff can work with no side effects at all, but it seems that those that experience some type of side effect have a higher percentage of response. And the longer the antibodies are received the higher the response rate also!
If it works for me it may not be a cure, although it could be, but at least it may allow me to live with this crap for quite awhile.
Right now I am pretty much symptom free as far as the tumors go, I know that if this is going to take six to twelve weeks to see any benefit. Hopefully this crap does not grow that fast!
If I can maintain quality of life I will be a happy camper. I want to keep working and my goal is to not go back on disability. That's to much like sitting around waiting for the inevitable.
As far as here and now...
Picked up Kyle yesterday and put the boat in. Fished for a few hours, and saw lots of fish but only one small silver to the boat.
Heading back out today, just Kyle and I. It will be a good day, fish or not!

2008-08-07T11:57:00.000-07:00

back and hard at work!

2008-07-31T12:57:00.001-07:00

beach in Cabo

Cabo

2008-07-31T12:30:00.000-07:00

Damn wee needed this...
tonight there will be ten having champagne in our room...
then we are going to go tear down this town!
we have extended 'till monday...after that is reality...
none of us are ready for that right now
I could not sleep last night. Poured my wife into bed, twice
and then I went out to the beach and just sat there and watched the waves pound the shore..we are on the Pacific side for those that that makes sense to..
probably sat out there for three hours and watched the waves and thought...
I doubt there is a more beutiful place on earth!
although I think security was a bit concerned about me, they never botherd me, I think I gave them an excuse to watch the waves too!
Sat there 'till 4am or so
I will be back here many times in my mind...especially on those nights that sleep never comes. This may be my last vacation...but it is certianlly as good as anything I could have dreamed up, better actually, as it just kind of happened...
I am surrounded by the best people on earth...here and at home
Thank all of you so much, I so dont deserve this

2008-07-27T12:43:00.000-07:00

luncha...
costco broiled chicken on a bagutte

We made it to Cabo!!!

2008-07-26T20:52:00.000-07:00

This is the view from our room, looking out over Cabo San Lucas, the marina and the Sea of Cortez

This is the view looking out over the Pacific Ocean from the Pool Bar next to our room

I have a bunch of other pics that I cant seem to get uploaded right now!
Figures...
We got upgraded to a penthouse suite. This place makes the Westin look like a dump! No kidding...views of Cabo and the marina...Pacific on the other side...
I have no idea what this would cost if you paid for it by the night...
We have it for a week! With friends!
More later
Damn, Cant get the spell check to work!!! Now you will all know how bad I did in Mrs. Winsbergs class!

DOH...the pics are in reverse order...
Damn I wish I could figure this crap out!

2008-07-25T20:04:00.000-07:00

for those that dont know.
Pleepleius is this little stuffed monkey fron a favorite show of mine. Its on MOJOHD and its called Three Sheets...check it out, its a blast, they send a comedian all over the world to drink locally and film a show about it. Long story about the monkey, but suffice it say that he is there so Zanes wife know's she is in his thoughts...AND... whenever he shows up on screen you have to drink!
Pleeplius is going with us to Mexico!
Hmmmmm...can pleeplius dive?

2008-07-25T19:45:00.001-07:00

pleepleus says "we are going to Cabo!"

heading out in the morning

2008-07-25T18:26:00.000-07:00

Cabo here we come.
Lots of drama around here in the last few days...I am sick of it and just want to get away...go to Mexico and go diving 'till I cant dive anymore!
(not really but it does have a romantic ring to it, no? Si!
Dos Cervases por fovoure...or how ever its spelled.
Hope to have some pics and if my phone or the computer works we will be able to blog. Got all my UPF clothes packed up along with copius amonts of sunscreen(little late I know!!!)

Its going to be a blast!

2008-07-24T00:15:00.000-07:00

Its weird...
I get strength from hearing feedback...
Thank you you so very much!!!
Koop I want your email!
I cannot believe how much the support here means to Tammy and I...
I am not giving up!
I put my head down and plow ahead...
its what I know how to do!
I hope to god you never know what this is like!
I never want my friends to go through this!...EVER!!!!!

2008-07-24T00:04:00.000-07:00

Tomorrow is the big bone scan!
More nuclear medicine...
This shit can't be good for me!
oh well...I want to live!!!
Amazing how your parameters change!
probably less destructive than a six pack a night of IPA...

Today is our seventh anniversary

2008-07-22T15:32:00.000-07:00

and 2005 was our last vacation. We went to Waikiki and Kona. She got to meet some of my old friends...and on a late night walk down the beach, I asked her to marry me!
Obviously we did not know we were going to be going through hell shortly!
Anyway, she needs a break. Especially after this last 12 months or so!
Friday we leave for Cabo SanLucas. We will be staying at the Playa Grande Resort. One of the Solmar properties and our favorite place there (we have only been to three!)
No diving this time, but we are taking snorkeling gear and the u/w camera's. We should have some good pics!
We have several friends going with us and several more that may pop in for a day or two so it will be a fun trip!
A solid week that we can both put this crap out of our minds!
Forget about everything!
RIIIIGGHHT
well we will try!
there will be wifi in the room so I may blog while we are there...or not, it would be fun to show off some pics though, it really is a great place and CSL is a fun town...definitely not a sleepy little fishing town anymore, but still a fun place!
The nice part is that this is going to cost us next to nothing. One friend works for and airline and gave us passes...and Tammy has had this timeshare forever, and we keep losing weeks...so we booked a luxury suite for four...times 2, so we have room for 8 of us all week. It wound up costing us the equivalent of four weeks...but we would probably have lost 2 of them in October from not using them!
So now we have room for all our friends...all week!
The one thing that has been a constant through all of the hard times!
Friends and family! We have been surrounded by the most wonderful group of people...I cannot come close to expressing how fortunate we are to have the friends and family that we do!
I love my in laws!
Tammy loves my parents!
how messed up is that!
(yes they read this ;-})

My neighbor mentioned last fall when I was going through chemo...
Something along the lines of..When most people get sick they wind up alone, when you get sick there are so many people at your house every night that I cant get up my driveway!
No he was not mad about it and he was only partially kidding. We don't have much room to park here at the new place.
So a quick catch up for all of those coming into this new.
I had a mole cut off my back in February of 2007. It came back as melanoma and the dermatologist took out a bigger chunk (about 4 inches dia) and said all was well.
Tammy and I got married in Las Vegas on April fools day and we had a reception/April birthday party at the Yacht Club in DesMoines the 20th of April.
Life was bliss.
15th of August is when the swelling started and you can read the rest in the column to the right.
I guess I am putting all this in here because I am making a bit of an effort to get in touch with the friends I grew up with. I come from a small logging town in the Washington Cascades and my graduating class had 23(?) people in it. Good old Morton High School! Might actually make it to the Loggers Jubilee this year!
Anyway out of time for now and wishing I could be more eloquent...

2008-07-22T08:59:00.001-07:00

70 foot beams from seatac airport to centralia...easy money!

me in the raw...

2008-07-20T22:03:00.000-07:00

Nope no pics!
I guess in a way I feel kinda bad for losing it a bit.
I promised myself I would not edit this. And if I am awake at 3am and having a bad night then that is what you are going to read!
this is me, no editing, warts, tumors and all!
I guess in the long run that's the best policy..
I really had a good weekend with my son...I wish the fishing would have gone a bit better, but we still had fun!
And yes if you are wondering he reads this too!
I owe him honesty, and he knows I am not perfect. He seems to love me anyway! Go figure!
Life can suck but by god we will make the best of this...
Gotta go
I have to be up at 430
life goes on...

so now I know my drill

2008-07-20T01:44:00.000-07:00

I have to be strong...
I get to make others feel better!
I stand strong against the tide!
I am the one who does not give up!
I am he who stands strong, no matter the cost!
I am the one who makes the evil seem benign!
I am the one who makes the world seem fair.
I am the one who makes life fair to my son
I am the one who makes everything OK to my dad
I am the one who holds my wife
Life is not fair
no matter how hard I try I cry myself to sleep more nights than not
I see a lot of people give lip service to it but dammit I am living this...dying it
it sucks
its bullshit
its fucked up
I hate it
I REFUSE TO GIVE UP...THIS SHIT WILL NEVER OWN ME!!!!!
it may kill me but it will NEVER EVER OWN ME!
and the respite I get is to break down here once in a great while...
thank you!
sorry if you think its vulger but FUCK CANCER!
FUCK IT !
I REFUSE TO GIVE IN TO THIS SHIT!
FUCK CANCER TO HELL AND BACK!

Also to mention

2008-07-17T21:46:00.000-07:00

Dr Bahtia (sp) mentioned that he was working on a new protocol that may help me...I just need to get 3 or 4 more months...
Dammit I feel great right now!
I am down as hell because of this but physically I feel great...
Had to go to the hospital where I had my original lymph node surgery today...visiting a friends son, had his appendix out by the same surgeon i had!
Actually crossed paths with him in the hall and talked with him briefly. He was glad to see me looking healthy and was bummed when I told him what was going on.
Damn this crap anyway...I don't want to just beat it I want to rip it out and torture it...I want to stand toe to toe and do what I know how to do!
well....
Its a great thought!

Today was the big day!

2008-07-16T20:51:00.000-07:00

I tried posting from my phone but they have not gone through yet.
anyway
mdx 10 it is
it works about 10 percent of the time...
Its also about the best hope I have right now.
No t-cell study for me. My screening came back that I have unacceptable antigens...
There is one more option too...if the Ipilimumab (mdx010) does not work then we can do high dose il-2...ummm yeah, that's the stuffthat kicked my ass during chemo...
lovely stuff!
I will have Tammy post more, she is more accurate on the details than I am...and she took notes.

The tides Sunday was a blast...

2008-07-15T17:23:00.000-07:00

For those who don't know the Tides Tavern is quite the boaters destination here in south Puget Sound. It is located in Gig Harbor right off the north end of the Tacoma Narrows...(I will do bridge pics next time we get down there)...I am not very good at this blog thing or I would post a chart!
As an aside I might have a friend who can help with that!!!
The place has been around forever and has a great dock to tie up to, so tons of boats show up and everyone rafts out and we have just as much fun on the dock and the rafts as we do in the bar!
When I was sick and had a break my friends would load me or Tammy and I up and head for the Tides...usually on a winter afternoon that was cold and rainy and we were the only boat there!
Now everyone knows me.
Lots of hugs and tears this weekend, And so much positive energy its not even funny!
Hmmm... I have a revelation for you. I know this will be a shock?
Friends are good!
Trust me on this one.
Oh Yeah,,,we have appointments tomorrow! 1, 2 and 4pm. This is the big planning day! We are going to make the big decisions...will I live for another year? Not?
I have great faith in the team at SCCA! World leaders! Lets hope they have the right answers for me. Jesus what a burden they bear...thank god they have this calling!!!!!
As far as the last few posts go...
I like posting from my phone. It does have its drawbacks though. Editing is one...I try to just keep this to spellcheck though and I never go back after posting and change anything after I post it, I will work with it to make it right, but that's it! So I guess its not that big of a deal.

2008-07-13T16:24:00.001-07:00

hope you can see mt rainer in the background...
life with friends is awesome...and when your freinds love you life is even better!!!

2008-07-13T15:13:00.001-07:00

So we went to the tides tavern in Gig Harbor
Tammy and I ran our boat and we are on the deck having drinks and dinner.
We are so blessed to have so many friends. we showed up and everyone wanted to know how I was doing...

life is good
as I have said before, life does not have to be fair to be good!!!

2008-07-11T14:12:00.001-07:00

sir kiko canine growling at a heron that had the audacity to land on his dock. its pretty funny actually the bird is about 20 feet away and loking at kiko as if to say "what?"
its to windy today to fish so i am just cleaning and rigging on the boat.
iguess that really means i don't have much motivation...

finding the positive

2008-07-09T15:04:00.002-07:00

Tammy and I have been looking more into treatment options that are available to me. Its kind of funny but what we have been finding almost looks more promising than the standard protocol that I have been through.
Either that or I am eternally an optimist.
One thing is beyond doubt...when my woman puts her mind to something she will find a way to get what she wants! I think she has decided that she wants me cured (duh!) and its up to her to find a way to get it done...Those that know know that I no longer have a choice in the matter...I am going to get fixed!
There are studies for t-cells, white blood cells and several for mdx type drugs and the whole new class of drugs that work on the oxygen uptake in the cancer cells!
I have no idea what to expect, but I am not going to stop living life.
One more thing to do. Since it looks like we are in this for the long haul now, I am working on getting copies of ALL my records...this may in and of itself be enough to keep my mind off of anything bad!
MRI went well today and they even showed me a couple of the scans...yes there was a brain inside my head! (or maybe it was the guy in the other machine?)
Dr Thompson will give me a call when he gets the report and once we know whether it is clear or not we can start making plans!
I think my moments of weakness are over for now and I am back to fight mode...
More appointments tomorrow afternoon but nothing oncology related...

waiting game

2008-07-08T18:25:00.000-07:00

Could not work today...just couldn't do it. Tammy stayed home to. I wound up with a migrane and passed out on the couch for most of the afternoon.
This morning I did a little reasearch on the web and found some pretty promising stuff as far as new drugs and current clinical trials.
There is a t-cell trial that looks to be ongoing right now as well as a trial for mdx-010 and mdx-1379.
There is also a study working to identify gene mutations in patients with a family history of melanoma. I am really intrested in that as I apparently have a pretty strong family history. There are several other clinical trials that look promising and It sounds like Dr Thompson is going to have several options for me when we get the results back on my brain MRI tomorrow morning.
Its pretty reassuring when I get to looking at all these trials and Dr Thompson seems to be involved in most of them. I don't think I could find a better team!

Today I had to bail

2008-07-07T15:03:00.000-07:00

out of work...there where a few people that I wanted to tell in person. and after awhile it just got to be to much.
It seems that I am the one who needs to help everyone feel better about MY predicament...
Ironic huh?
I wish the news was better, but it sounds like there are options. I am going to have another brain MRI on Wednesday morning. How that comes back will determine alot. I don't think that it will be anything but clear.
So the biopsy that they did came back positive. That seems to mean that the lump under my surgery scar that started growing before radiation is a met(tumor) that has been with me since radiation and all through chemo...we slowed it down but once the drugs got out of my system it started growing again. Might explain why the scar was black?
Same thing with the "spots" on my lungs and liver that have been there from the beginning...even though they did not show up on the PET scan.
oh well. I am not second guessing anybody....well maybe one
I still am looking for a biopsy report and I will leave it at that for now.
It may only be that I feel I need a mission or someone to blame...and I don't think either of those are reasons to bitch and whine in a public forum.
I will say this. I am not a religious person. I am probably more Buddhist than anything else. All I know is that I have a really great life. And better friends than I deserve. If positive energy or prayer or whatever, counts for a hill of beans in the big scheme...I will kick this things ass! I cannot convey to you the quality of friends, family and caregivers that we have surrounding us!
And I have to go now 'cuz that's making me cry...
Thank you....

2008-07-06T16:04:00.000-07:00

and the view that goes with it. I looked at that view all winter while I was sick. I had hoped that that would be the last I would have to deal with melanoma. Alas it isn't so. I got my scan results on wednesday and its pretty grimm... Multiple mets in my lungs, one of which doubled in size in 2 months, and stuff growing in my liver and right armpit. I will update more soon. ding ding ding....round two...and I'm up against the 400lb gorilla this time...lets see if my skinny little ass can swing hard enough!

2008-07-06T15:56:00.001-07:00

our dream house in the woods.

2008-07-04T20:22:00.001-07:00

the camp...mayhem will soon ensue.
Its so great to have a weekend with my parents.
Life does not have to be fair to be good!

2008-06-14T10:45:00.001-07:00

48 degree water in a 3 mill suit.
thats what happens when you drop an expensive bottle of champagne off the dock

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2008-06-13T13:51:00.001-07:00

so i am down delivering a load to a customer at fishermans terminal here in seattle and these guys are in here. i guess i think its kind of sad...or just funny what 15 minutes of fame will do to some people.
some of the guys walking around on deck look really thrilled... talking to the guy that unloaded me it doesn't sound like it bothers them to much when someone picks up the bar tab though. nothing like a bunch of crab fisherman partying like rock stars!

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life is good

2008-06-12T21:13:00.000-07:00

DUHH!!!
My ribs still hurt from the truck wreck, guess that means I broke one.
I am still waiting on biopsy results for the two moles cut off at my last dermatologist appointment. I think I need to call them...should be back by now!
And in three weeks I get a new scan to find out if the new mass on my lung has decided to be evil or not!

Work is busy..11 and a half hours today and I'm at 12 hours of OT for the pay period. I am thrashed tonight but I will rebound by morning. The fatigue is disappearing...slowly but surely... as is the nueropathy in my feet and hands.
My balance is coming back and so is my ability to climb around monkey style on cranes and such.
I have been thinking about it and I think I want to keep blogging, but more about life than being sick. More boating, Diving, Travel Friends and work type stuff. Oh yeah dog too! My son has been having issues as well but I have kind of left him out of this out of respect for his privacy. If he wants me to I will put in more about him.
This weekend looks like it might be fun. We may have some sunny weather for the first time this year...memorial day weekend was pretty nice but the weather has turned crappy since, and has reverted to February weather. Rainy and high 40's (yes F) Today was such a nice change. Low 60's tonight and the water on the sound looked like glass. That's a far cry from Monday when I came home to a tree down across our main street due to our June "windstorm!"
That's it for tonight...shower and bed for me now...

2008-06-10T10:09:00.000-07:00

Sir licks alot on his throne

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was going to edit the last post but what the heck...

2008-06-04T19:43:00.000-07:00

Its just a text message anyway.
Back to work tomorrow, 4 am start.
Still waiting for biopsy results, now that they are officially overdue I have kinda started worrying.
Everything else is going very well. Morew energy and less pain all the time. Damn its a slow process though.
Progress is all that matters!