Joel & Sharon Twist

It has been a long road!

2011-11-06T13:47:00.000-08:00

Sorry it has been so long to get up to date. The days have been a blur of doctor's visits, blood tests, pills, sleep, stays in the hospital, biopseys, battleing GVHD (graft vs host diesease), and various and sundry other fungus, bacteria, and virus that had no other purpose in life than make my life miserable. They did a pretty good job at it, but fighting a losing battle as I get stronger.

I will attempt to chronicle the past year, but will probably only hit the high/low points. As far as the Bone Marrow Transplant is concerned, I am doing great! Officially delared to be in remission and free from leukemia. The things we are battleing are the issues that mainifest themselves in reaction to medications I am taking or caused by a low immune system, which simply must take time to grow. I feel good, have a good appetite, get tired easy and am bored.......but this is what I do right now.

The big one currently, is a condition called Nocardia, a rare bacteria that attached to my lung causing pnumonia type symtoms. Spent the month of August in the hospital at OSHU ( second year in a row that I spent my birthday in the hospital), while they tried to figure out what a had, once determined, began a 6 month antibiotoc treatment. The antibiotics used to treat that have caused great upset in my lower GI tract which is now being corrected with another medication.

OK.....I am getting off course here! I had my Bone Marrow Transplant on Jan. 27th, after another round of chemo and full body radiation. The donor was my sister Kathy who is 6 years younger than me, lives in Upstate New York and a perfect match to be my donor. She and my sister Mary flew out 10 days prior to the transplant in order to accomplish the required tests....... I had not seen either one in 32 years and to try and describe to you the emotions of that reunion is impossible! Needless to say it was a very busy time for all of us. The transplant team collected Kathy's stem cells on the 27th and I checked into the hospital the same day, after radiation. Something I will never forget is watching that strawberry colored fluid drip into my body while holding my sister's hand as she sat next to my bed.

I know have my sister's blood type and all my blood cells are now her's. My hair is finally growing back and it is coming in curley. Her cells are very active and had to be surpressed for a while, all in all a life changing/saving experience.

Up until two weeks ago we had to see the doctor and have labs drawn every week. We are now on a 2 week schedule, really helps the gas bill (33 miles one way) and our peace of mind. I would be totally remiss to not mention the love and support of our family and friends. We heat our house wth wood that is something that was my job every year to get in the wood.......out of the question this year.A good fiend felled 2 giant fir trees behind our barn and would not take any compensation for and then my son Matt, daughter Jennifer and son-in-law David went to work and turned those huge trees into firewood all stacked in the woodshed.......I so appreciate my family! One of the hardest things for me to accept is to watch helplessly as favor after favor is done and I can't help.

Sharon, my wife and caregiver.......what can I say? For two years this woman has done for me what I could not do for myself. Feeding me, washing me, wiping my butt, keeping me warm and tryng to encourage during the down days, challenging during the good days. She has driven me to every appointment and tried to fix foods that I would eat when my appetite was gone. Don't ask me how she did it but started a bunch of plants in our greenhouse, planted a big garden and canned the vegtables and made applesauce from our fruit trees. She mowed the lawn, pulled weeds, maintained a flower garden, cleaned off roofs and cleaned gutters. Every day she builds and maintains a fire in the woodstove while keeping the house clean, dishes and laundry done. All the grocery shopping and meal prep are accomplished and all the while she keeps herself looking 20 years younger. Her joy in life is her grandchildren and a flock of baby chicks she is raising to provide us with eggs......an amazing woman, I cannot think of any anyone who is like her........a blessing from God for me that I can't expain.

The Two Step - Second Round of Chemo Done

2010-12-11T10:41:00.000-08:00

It is the 11th of December, a Saturday morning, and I was counting on finishing the second round of chemo (consolidation as the call it) on Friday, but when we arrived at the hospital on Monday, by the time they got us checked in and I finished another CAT scan, the chemo treatment did not start till about 9:PM. I was scheduled for 5 treatment and each ran 24 hours so here I am waiting for the last bag to finish about 9PM tonight......am scheduled to be able to go home tomorrow (Sunday) morning. This round of chemo went much better than the last, I started with a higher blood count this time, last time I was running on zero, and me thinks that made a differerence. I have been able to kinda hold the blood counts pretty good which has all the docs surprised, some say it will kick me in the butt again within the next 7 days but if that happens at least I will be at home and Sharon can keep me going. We are planning for a Bone Marrow Transplant at Oregon Health Science Universith, here in Portland. Maybe first part of January. Events have changed since my condition migrating to AML and that we can have it done here in Portland instead of having to move to Seattle VA for 6 months. What a blessing! The possiblity even exists that my sister Kathy (my donor) could donate her stem cells at Roswell Park Cancer Institute in Buffalo, NY.....this would allow her to stay at home instead of coming here and the nasty travel at this time of the year....this would be a good thing, although I would dearly love to see her, that could wait till nicer weather. Hope to have an answer to that situation sometime next week......be praying.

I can't say too much for the staff here at Portland VA..... great folks, great attitudes.

I feel prretty good considering what I am doing, really looking forward to getting home and seeing the family again. We had a great Thanksgiving, especially, I think, for me! All our family members were there plus a couple of the nurses that did not have family in the area. Sharon did the dinner and it was one of those perfect times when everything came together hot and ready to eat all at the same time, and everybody was commenting how good it tasted. Sharon has had lots of practice and she really nailed it. One special memory I will never forget is Jen & Dave's baby, and our newest granddaughter, Brooklyn, (6 months old) joinng us for the first time at the dining room table. It is a long rectangular table and Katie, Matt and Bethie's 2 year year old, and Brooklyn were both seated at the end of the table in high chairs. Katie seemed especially into Thanksgiving this year and previously Brookers had always been parked in a one of those nic nac things that babies sleep in, on the other end of the table, but this was the first time that she joined the family group sitting at the table. Happy with a plasting baby spoon in her hand, her usually big blue eyes seemed bigger and brighter that ever, as she seemed to realize that she was was now included in the family group. Every once in a while someone would put a little touch of mashed potatoes and gravy or pumpkin pie on the end of a spoon and let her taste it..... don't you just love those faces they make as they experience new tastes? Well, that scene really touched my heart and I will never forget it. A great time was had by all!

I would like to add a little analogy using my old friends from the land of Brer Rabbit..... but I divest from one of the traditional story lines to make a point of my own, but using these friends of mine.

You will remember, I see me as Brer Rabbit and Brer Fox (and cronies) as the the disease that is trying to get me. Well, it seems that one day Brer Rabbit was feeling pretty good about his self, so far he been side steppin every trap Brer Fox been settin for him.....coursin, he knows he ain't been doing that on his own, he knows that there been lots of folks who been helpin and thinkin good thoughts and watchin out for.him......couse, sometimes his own uppity way trys to take over but so far, he been able push that down. This day the sun was shining and those uppity ways was just a pokin out all over, he was kickin up his heels and doing this and doin that......he was sittin down in his laughin place and looks up in the tree and low and behold there sits his ole friend Brer Owl.....jus a sittin ther and watchin him. Now everybody knows Owl is very wise, some say he has a special purpose, given to him by the Creator Himself to watch over all the Brer Folks that knows the Creator story.....Brer Rabbit, he fancies hisself as one of those folks that always loves to listen to the Creator stories as told by Owl.......Morning says Rabbibt to Owl....how uz been? Ain't seen you in a coons age. Owl says morning Rabbit, I been watchin you all along....I been keepin real busy trying to keep you otta trouble........Rabbit says "You is?" "I dunt know that!" Brer Owl says, there lots of things you dunt know Rabbit......but know this.....there ain't nuffin that goes on that ain't seen......there ain't nuffin that goes on that ain't allowed and the Creator cares for all His folks more that you could ever know..... so jus ferguet them uppity ways and watch one day ats a time as to whuts happnin and keep listnin to the stories of the Creator and you will see ur little Laughin Place start gettin bigger and brighter. Now Rabbit.......he ain't no fool.....he likes the sound of that so wif a fresh attitide, he jus Zippy Do Dah down the road knowin that Ain't nuffin that going to happen that ain't spose to be.

Day 23 - Almost got me!

2010-11-12T10:53:00.000-08:00

Blog - November 10th Day 23
I am going to make an attempt at circumstances beginning with a call from my Oncologist on Oct 15th, telling me that I needed to be in the hospital Monday morning at 10AM, up to where I find myself today. She was reading the results of a recent bone marrow biopsey that showed the MDS I had been fighting over a year had transformed itself into AML ( Acute Myloid Leukemia). I asked her if there any options, she said "no, you have 4 weeks to live without this induction chemo treatment, it is the only option I can offer"...... you know, that kinda get a person's attention! To compound the issue, we had 36 puppies all ready to go to their "forever homes" within a week. Much of what is a great blur of chemo (24x7) little sleep, missing family, missing Mama's cooking, not caring about cooking, endless rounds of questions from doctors, exciting highs and the endless waiting.

Arrived at the hospital Monday morning and went to have blood work drawn, sometimes I wonder if I have given them more blood than they have given me, over the last year (over 20 infusions) but who's counting amoung friends! Got to room and settled in, had lunch (an ominous precursor of what waas to come) and wisked away for a couple tests......OK, so far so good! The folks here at VA Portland just can't be beat, they deal daily with folks with one foot in the grave and another on a banana peel. Attitudes and professionalism are apparent. However, there is something foreboding about, bright and early, Tuesday morning..... they require two more IV sites in addition to the PICC and proceed to hang about 6 bags of stuff, of different colors and size, all dripping poisen into you. This continous 24x7. Well, I says to me, maybe you will dodge the bullet! WRONG!!!!!!! About day nine things get a little fuzzy, I was talking to Sharon on the phone and it was like all the energy drained out of body, I told her goodbye, saying I was getting real tired, thankfully got the phone put away and proceeded to loose my lunch, well it was not big loss anyway......that's when the blurry part started.

As I write this, it is day 23, and spareing all the gory stuff, I think things are on the mend. The chemo was adminstered 24x7, so I have been off it for about 15 days. We are still hooked to various antibiotics, anti fungal and microbicides because the chemo has left me without any immune system. The thing we are looking for now is to get my white cells producing again, and like little Pac-Men, looking for and gobbleing up the bad guys like bacteria and fungus. A healthy person's blood count includes WBCs at about 4 - 8 this last year mine usually ran between 1-2. At day 16, mine still showed as 0. Yesterday they were at .5 and expected to really begin to grow by day 26. Best news was on Friday a team of docs came in the room, all smileing, lead doc simply said, "YOU ARE CANCER FREE", preliminary marrow tests show no cancer call"...... well, I started laughing and blubbering, pretty soon everybody was high fiveing clapping, cheering.....pretty cool! I asked him "how often does this happen?" his response "not very often"! We appreciate all your offers of help, kind thoughts and especially your prayers, please keep me on the list a little longer. Our goal is be home for a real special Thanksgiving.

At this point it is the battle for immune system. The cancer is gone now they have fix what got broken by the fixing. I have pnemonia and waiting for fungus cultures from the inside of my lungs. Docs can now take a camera, about the size of a pencil that includes water and a light and look right at your lungs, all while you are awake! That is after spraying and inhaling a Lynocaine anestheic for 2-3 minutes, the most foul tasting stuff you could ever imagine, even Brer Bear wouldn't like that stuff. The results should be back in 3-5 more days. During that time they are treating with "shotgun approach" as opposed to a "rifle approach.

My how time flies! Here we are at day 24! The only reason I add this note is significant news......look like we are going to make our goal of being home for Thanksgiving!
Like Brer Rabbit always say "ain't no Brer Fox or Brer Bear gonna get me"......hummmm! that reminds me of a story. Seems like:

“One day after Brer Rabbit had slump in the well, Brer Fox went to work and got some tar. He mixed it with some turpentine, and fixed up a contraption that he call a Tar-Baby. He put a straw hat on the Tar-Baby and sat her in the middle of the road, then hid in the bushes to see what would happen. He didn’t have to wait long either, because Brer Rabbit soon came pacing down the road—lippity-clippity, clippity-lippity—as saucy as a jay-bird. Brer Fox, he lay low. Brer Rabbit come prancing along until he spotted the Tar-Baby. Curious and dumb, but wantin to impolite,he fetched up on his hind legs as if he was astonished. The Tar Baby, she sat there and Brer Fox lay low.
“Good morning,” said Brer Rabbit, “Nice weather we’re having.” The Tar-Baby said nothing. Brer Fox laid low and grinned an evil grin. Brer Rabbit tried again. “And how are you feeling this fine day?” Brer Fox winked his eye slowly and laid low in the bushes, and the Tar Baby, well, she said nothing. “How are you then? Are you deaf?” said Brer Rabbit. “If you are, I can shout louder.” Tar-Baby stayed still, and Brer Fox, he laid low. “You’re stuck up, that’s what you are,” said Brer Rabbit, “I’ll cure you, that’s what I’ll do.” “Brer Fox, he gave a belly-laugh, but Tar-Baby said nothing.

“I’m going to teach you how to talk to respectable people, if it’s my last act,’ said Brer Rabbit. ‘If you don’t take off that hat, I’m going to beat you up”. Tar-Baby stayed still, and Brer Fox, he laid low. Brer Rabbit keep on asking, and the Tar-Baby kept on saying nothing. Presently, Brer Rabbit drew back his fist and -BLIP- he hit the Tar-Baby on the side of the head. And that’s when he lost his cool. His fist stuck and he couldn’t get loose. The tar held him. But Tar-Baby, she stayed still, and Brer Fox, he laid low. “If you don’t let me go, I’ll hit you again,” said Brer Rabbit, and with that he swiped again with the other hand, and that stuck. Tar-Baby said nothing and Brer Fox, he laid low. “Let me go, or I’ll knock the stuffing out of you,” said Brer Rabbit, but Tar-Baby said nothing. She just hung on, and Brer Rabbit lost the use of his feet in the same way. Brer Fox, he laid low. Then Brer Rabbit yelled out that if the Tar-Baby didn’t turn him loose he’d head butt her side-on. So he butted, and his head got stuck. Then Brer Fox sauntered out, looking as innocent as one of your mummy’s mocking-birds. “Hiya, Brer Rabbit,” said Brer Fox. “You look sort of stuck up this morning,” and then he rolled on the ground, and laughed and laughed until he could laugh no more. “You’ll have to have dinner with me this time, Brer Rabbit. I’ve got some calamus root, and I won’t take any excuses”.
When Brer Fox found Brer Rabbit entangled with the Tar-Baby, he felt really good, and he rolled on the ground laughing. Eventually, he got up and said:
“Well, I think I got you this time, Brer Rabbit. Maybe I haven’t, but I think I have. You been running around here being cheeky for a mighty long time, but I think you’ve come to the end of the line. You’ve been cutting capers and bouncing about the neighbourhood where I’m in charge, and poking about in what is not your business,” said Brer Fox.

“Who asked you to chat up the Tar-Baby? And who stuck you up the way you are? Nobody in the round world. You just jammed yourself on that Tar-Baby without waiting for any invitation,” said Brer Fox,. “And there you are, and there you’ll stay until I fix up a heap of brushwood and make a fire, ’cos I’m going to barbeque you today for sure,” said Brer Fox.
So Brer Rabbit talked in a mighty humble way.

“I don’t care what you do with me, Brer Fox” said Brer Rabbit. “Just don’t fling me in that briar patch over there. Roast me, Brer Fox, but don’t fling me in in that briar patch,” said Brer Rabbit.
“It’s so much trouble to start a fire,” said Brer Fox, “that I think I’d rather hang you.”
“Hang me just as high as you please, Brer Fox,” said Brer Rabbit, “but for Lord’s sake don’t fling me in in that briar patch.
“I don’t have any string,” said Brer Fox, “so I think I’d rather drown you.”
“Drown me just as deep as you please, Brer Fox,” said Brer Rabbit, “but for Lord’s sake don’t fling me in in that briar patch.”
“There’s no water nearby,” said Brer Fox, “so I think I’d rather skin you.”
“Skin me, Brer Fox, snatch out my eyeballs, tear out my ears by the roots, and cut off my legs,” said Brer Rabbit. “Only please, Brer Fox, please don’t throw me into the briar patch.”
“It’s not going to be much fun skinning you,” said Brer Fox, “you’re not scared of that. But you are scared of the briar patch.”
And with that, Brer Fox yanked Brer Rabbit off the Tar-Baby, and he flung him -KERPLUNK!- right into the briar patch.
Well, there was a flutter where Brer Rabbit landed, then “Ooo! Oow! Ouch!” he screeched and he squalled. Then after a while, there was only a weak whisper from Brer Rabbit. Brer Fox listened.
“I got him! Brer Rabbit is dead!” said Brer Fox.
But then he heard a scuffling away at the other end of the briar patch. And low and behold, who does Brer Fox see scrambling out but Brer Rabbit himself, playing a briar bush whistle.

“Born and bred in the briar patch, that’s me,” laughed Brer Rabbit. “I told you not to throw me there. In all the world, that’s the place I love best!”
With a lippity clip, he hopped away.

Now don't ask me what anything this story has to my situation, except a few suttle comments concerning the forces arrayed against us in life.....email if you find them

Day 6 - In the Hospital

2010-10-25T19:46:00.000-07:00

Sharon dropped by this afternoon with a hamburger and a chocolate shake......shear ambrosia for the soul, after a week of institutional cooking! Even had a couple home made cupcakes from Jen....just does'nt get much better, well maybe it does. Tomorrow is the last day of chemo, will really be happy to get untied from the christmas tree. Then comes the waiting to see if my bone marrow has anything left. Bone Marrow Biopsey schedule for 2 weeks, that will tell the tale as to how much of a window we have for Bone Marrow Transplant.

Docs all say I am responding to the Induction Chemo real well, battled some high blood pressure last night caused by the chemo, 199/110, that was a personal lifetime high for me and also fighting blood sugar swings with insulin, caused by the same issues, both are said to be temporyand will normalize when the chemo is done. I guess my immune system is now official dead, so next couple weeks are critical to avoid infection/fungal/bleeding issues. I feel bad for teh nurses that have to wear coats and masks to see me.
My Brer Rabbit analogy for tonight is: Remember.....I'm the Rabbit, Fox and Bear are after ME!

One day, Brer Rabbit and Brer Fox and Brer Coon and Brer Bear and a lot of other animals decided to work together to plant a garden full of corn for roasting. They started early in the morning and raked and dug and raked some more, breaking up the hard ground so it would be ready for planting. It was a hot day, and Brer Rabbit got tired mighty quick. But he kept toting off the brush and clearing away the debris 'cause true to form, he had lots of stuff on his "to-do' list and a whole lot more on his "want-to" list.

Then Brer Rabbit got an idea. "Ow!" he shouted as loudly as he could. "I got me a briar in my hand!" He waved a paw and stuck it into his mouth. The other critters told him he'd better pull out the briar and wash his hand afore it got infected. That was just what Brer Rabbit wanted to hear. He hurried off, looking for a shady spot to take a quick nap. A little ways down the road, he found an old well with a couple of buckets hanging inside it, one at the top, and one down at the bottom.
"That looks like a mighty cool place to take a nap," Brer Rabbit said, and hopped right into the bucket.

Well, Brer Rabbit was mighty heavy - much heavier than the bucket full of water laying at the bottom. When he jumped into the empty bucket, it plummeted right down to the bottom of the well. Brer Rabbit hung onto the sides for dear life as the second bucket whipped passed him, splashing water all over him on its way to the top. He had never been so scared in his life.

Brer Rabbit's bucket landed with a smack in the water and bobbed up and down. Brer Rabbit was afraid to move, in case the bucket tipped over and landed him in the water. He lay in the bottom of the bucket and shook and shivered with fright, wondering what would happen next.
Now Brer Fox had been watching Brer Rabbit all morning. He knew right away that Brer Rabbit didn't have a briar in his paw and wondered what that rascal was up to. When Brer Rabbit snuck off, Brer Fox followed him and saw him jump into the bucket and disappear down the well.
Brer Fox was puzzled. Why would Brer Rabbit go into the well? Then he thought: "I bet he has some money hidden away down there and has gone to check up on it." Brer Fox crept up to the well, listening closely to see if he could hear anything. He didn't hear nothing. He peered down into the well, but all was dark and quiet, on account of Brer Rabbit holding so still so the bucket wouldn't tip him into the water.

Finally, Brer Fox shouted down into the well: "Brer Rabbit, what you doing down there?"

Brer Rabbit perked up at once, realizing that this might be his chance to get out of the well.

"I'm a fishing down here, Brer Fox," says he. "I thought I'd surprise everyone with a mess of fresh fish for lunch. There's some real nice fish down here."
"How many fish are there?" asked Brer Fox skeptically, sure that the rascally rabbit was really counting his gold.
"Scores and scores!" cried Brer Rabbit. "Why don't you come on down and help me carry them out?"
Well, that was the invitation Brer Fox was waiting for. He was going to go down into that well and get him some of Brer Rabbit's gold.
"How do I get down there?" asked Brer Fox.

Brer Rabbit grinned. Brer Fox was much heavier than he was. If Brer Fox jumped into the empty bucket at the top, then Brer Rabbit's bucket would go up, and Brer Fox's bucket would go down! So he said: "Jest jump into the bucket, Brer Fox."
Well, Brer Fox jumped into the empty bucket, and down it plummeted into the dark well. He passed Brer Rabbit about halfway down. Brer Rabbit was clinging to the sides of the bucket with all his might 'cause it was moving so fast. "Goodbye Brer Fox," he shouted as he rose. "Like the saying goes, some folks go up, and some go down! You should make it to the bottom all safe and sound."

Brer Rabbit jumped out of the well and ran back to the garden patch to tell the other critters that Brer Fox was down in the well muddying up the waters. Then he danced back to the well and shouted down to Brer Fox: "There's a hunting man coming along to get a drink o' water, Brer Fox. When he hauls you up, you'd best run away as fast as you can!"

Then Brer Rabbit went back to the garden patch. When the thirsty hunter hauled up the bucket full of water, a wet and shaky Brer Fox sprang out and ran away before the hunter could grab for his gun.

An hour later, Brer Fox and Brer Rabbit were both back in the garden, digging and hauling away debris and acting like nothing had happened. Except every once in a while, Brer Fox would look sideways at Brer Rabbit and grin, and the rascally rabbit would start to laugh and laugh 'cause both of them had looked so silly plummeting up and down in that ol' dark well.

Surprise - Day 4 in Hospital

2010-10-22T15:47:00.000-07:00

Surprise Adventure - Day 4

Not feeling so "sleep deprived" today, got a new bed yesterday after putting up with a "special whammy bammy" air actuated undulating Binford 6000 bed for special people. The thing sounded like a Boeing 747 each time you moved a fraction of an inch then cranked up it's turbine powered air compressor to undulate to compensate for your new position….. now I have an old fashioned bed. You know, the kind that costs about half as much but is twice as comfortable. AHHHH! But isn't technology wonderful.

Below is the text of a letter I wrote to my sister Kathy, she is the one who has consented to take a short ride as a perfect match donor with me on this BMT adventure, she lives in Upstate New York where I was born about 7 years before she was, have not seen her in over 40 years, my younger sister Mary says she believes our deceased Mom has engineered this whole thing to get our family back together again….she may be right!

Letter to Kathy….
Good to hear from you...... thanks for writing..... am not feeling any ill effects from the chemo ( I think) , they keep telling me I am doing great. Two units of blood last night and two units of platelets this morning, they are trying to stay ahead of cell loss. I am researching the option of having BMT at OHSU (a local well known cancer hospital) and using Medicare instead of VA as a funding source. Medicare requires a 20% copay, but there are groups that assist with that, so am gathering that info. Medicare was not an option while I had MDS but will pay for a BMT if you have AML, red tape is crazy. It would allow us to stay at home, instead of shutting down everything to spend 6 months in Seattle, also options for you meet and become part of your extended family.

Sharon comes when she can, when doctor told us we had to be hospital Monday morning, we had 36 pups ready to go to their forever home, about 20 deliver already. The kids pitched in, Matt learning website/accounting/database procedures, Jen backing him up while supplying food and co-ordination. I and patched into home computer through my laptop tethered to a Blackberry, that works OK to check on Matt and continue administrate our business from here.

Took pics of the presentation of breakfast this morning and the early "Christmas tree" full of chemo bags which I will try to include in a daily update to our blog. Hope to be out of here by Thanksgiving. Say Hi to everybody, especially Mary..... tell Shan I would have plenty of time to build the visual Twist Family Tree if she could find some time to gather/scan the pics we talked about earlier this year.

Presentation of Breakfast:

Now those of you who know my wife Sharon, know she is a good cook, one of the favorite breakfasts she makes is a poached egg on English muffin….. I think that's what this is supposed to be. Sharon's is warm and soft, melts in your mouth, even if you don't have teeth….this one is cold and hard, requires good choppers and the egg can easily serve as a rubber Frisbee. I was hungry, so man of little will power I had, I caved, about a half hour later, I had my breakfast and a new case of sore gums……sure hope to have teeth by Thanksgiving! Presentation of lunch was not much different, some kind of pelletized meat sitting underneath a scoop of mashed potatoes that strongly resembled a Frisbee….. do you see a pattern developing here? There were some boiled zucchini slices which I promptly devoured and a cup of half melted rainbow sherbet which shortly follow…. Remembering a vague promise from Sharon for a visit that included food, and the reminder of damaged gums, I digressed from the remainder of the food in hope of that visit. About a half hour before dinner was served, my wonderful wife entered bearing a gift of spaghetti and meatballs in a bean pot, still warm….. probably based on the supposition that she makes that drive in 45 minutes while it takes me an hour. The smell of which soon filled my luxury suite at the VA, I am sure prompting the nurse to deliver the evening offering, sure enough, same thing that was served for lunch with a different color gravy on top of the Frisbee potatoes and a side dish of creamed corn instead of boiled zucchini, such imagination was hard to refuse but was already near foundered by the spaghetti, the addition of a piece of cake which Sharon ate and a cup of pears which I ate was all we could manage so the nurse graciously offered to remove the remainder it to a waiting receptacle, I assume to be recycled at the nearest hog/chicken farm into the basis of next month's presentations.

The last thing I would like to share is an early 'Christmas Tree" that stands beside my bed and is decorated with various pumps and brightly colored bags of chemo. Currently I have 5 bags draining into me and have has up to 7 today draining at one time today.

Well I tried to get the blog to co-operate but it wont....so click this link below if you want see this post with pics pics:
http://www.homewego.com/blog_surprise_hospital_day4.htm
True to my wacky little analogy section -- "What would Bre'r Rabbit Do"? -- Remember Brer Rabbit is me, Brer Fox and Brer Bear are the bad guys……just tryin to do me in..…..
Now Brer Rabbit, he feeling pretty good about outfoxing (excuse the pun) Brer Fox, he almost laughed hisself to death in his Laughin Place, had a good nights sleep and now was thinking about how to get back at that wascally fox. Hummm he say, bout this time of day old Brer Bear is always takin a nap in his cave, so Rabbit, he sneaketi sneck to the cave and he hears Bear snoring up a storm on the couch, peeks throgh the door and sees all is clear, chuckling under his breath he slow crawls up to the couch and begins to whisper in Brer Bears ear…."Honey Tree", Honey Tree"…over and over again. Pretty soon old Brer Bear gets to lickin his chops and drooling all over hisself, Rabbit was having so much fun with Bear that he never saw Old Brer Fox walk through the front door and Fox sees rabbit whispering in Bears ear, sneaks up behind him and whack, grabs him about the ears and Rabbit lets out a whoop that could be heard all the way to Remus Holler…… of course Bear wakes up lickity split and sees what is going on….. but then remembers "Honey Tree"……Fox says we got him….lets have dinner! Rabbit he says NOPE! If you eat me for dinner, you won't know where that big fat, delicious honey tree is that I found. Bear stopped mid step while pulling out the dinner plates and said "did you say Honey tree"? Yup says Rabbit, I said "honey tree"….. now Fox sees right away whets going on and he turned to run with Brer Rabbit but Bear grabbed him by the tale, turned him around and said "Fox..we..is..going..to..the..Honey Tree….. DO YOU AGREE? Fox knowing when he is beat says yup we is going to the honey tree. They throwed a rope around Rabbits neck and said "March". Fox following Rabbit holding the rope and Bear following Fox with a big club in his hand. About a mile down the road, Rabbit points into the woods and say "we gots to go there…..listen….sure nuff, they hear the buzzing of the bees and Bear he is getting real excited……but he ain't no fools…..he been here before and them bee stings hurt….. Fox he say " give me ur coat", "what for says Fox?" Bear says cause I gotta cover my head and nose from all the stinging, and gimme that rope to tie it down". But Bear Fox says "that no count Rabbit will run away" Bear says "No he won't, just sit on him". So Fox gives bear his coat and his rope, sits on Rabbit and Bear wraps the coat roun his head and nose and ties it roun his neck. Can't see real well, but heads for the buzzing and jumps in right where the buzzing is loudest…..Fox hearst a terible comotion and Brer Bear comes running out with Brer Bull swing his horns awful close to his backside……you see Brer Bull was taking a snooze in those buses and Bear jumped right on his head a grabbin at his nose, which Bull did not take too kindly too. Now Fox sees troble coming straight at him and afore he could move Bear plows right into him followed by Bull all in heap just a kicking and a bitin and a bellowin and raisin all kinds of dust…..naturly Rabbit jumped out of that that free for all real quick and took offa running to his Laughin Place, where he laughed so hard he cried. Now where is your Laughin Place, have you been there lately? By the way the take away from this story is don't mess with the Rabbit when he knows where the Bull takes his nap.

Surprise- Surprise - Surprise

2010-10-19T21:44:00.000-07:00

Surprise, Surprise, Surprise - October 15th, 2010 Prayer is a good thing!
Had news on Thursday that last Bone Marrow Biopsy showed that the drug (Vidaza) I am taking is no longer working and I have progressed to AML (Acute Myeloid Leukemia). Blast count is now 24 and AML threshold is 20. This throws me out of consideration for a Bone Marrow Transplant for the near future. They want me in the hospital first thing Monday morning for a 7 day session of induction chemo followed by a 3 week stay in hospital sanitary environment as all my immune system will be destroyed. They want to monitor for any infection, fungus or need for blood transfusion. Ultimate goal is get blast count back below 20 and get the BMT done ASAP.

I asked what kind of alternative I was looking at and doctor said that without treatment I would be dead in 4 weeks, with treatment we are looking at a 60-70% success remission rate.

Kind of a catch 22, they were waiting for a spot (infection/fungus) on my lung to disappear, it had been progressively getting smaller each 4 week cycle that they tested it with a CT Scan, however my white blood count is so low I can't fight off the infection very fast. A BMT can't be done with that infection present.

Still without teeth and looks like I won't get them till am out of the hospital, hopefully by Thanksgiving. Real busy getting rid of 36 pups and caring for one with a broken leg. Kids and Sharon really stepping up to help learn Alderwood 101 in a weekend. I have my laptop set up so I can connect to my home computer using my Blackberry (971 344-3282) as a tether. So should be able to send and receive emails. I really don't know yet to what degree I will be isolated.

Kids will out to learn more today as we deliver more pups and Sharon is making a meal of venison spaghetti, that should go a long way to making me strong. I have a link on the front page of the Alderwood Labradors website (http://www.oregonlabrador.com) and another on Facebook that will take you to our blog which I will try to keep updated while in the hospital the link to the blog is http://www.twisterme.blogspot.com

I find it amazing in a situation which only has a few options, how clearly one can think. I also find amazing the concern people have for one another when things get serious. Somehow that speaks of a “brotherhood” of people that take away all the fluff and busy lives, there seems to be a common bond of concern if not outright love.

So where does this lead us? Certainly the focus is now on knocking the AML back to a level where a BMT is considered safe and would be effective.

10/19/2010 - Am in the Portland VA Hospital. And will be for about 30 days….. at least that is the plan today. The idea is to use a very tough chemo plan to cure this nasty old AML ( for a while) and take me back to the good old days of MDS….. what did I just say…… amazing how one’s perspective changes…… speaking of perspective you may want to look at a website I am building http://www.dareconsiderthis.org, it’s not finished yet, but you may find what is there interesting, comments are certainly welcomed! I will have considerable time to work on it in the next month or so.

Met with 5 different doctors today, all wanted to hear my story, I am calling them the “A” Team, as in aint no more Azacitidine (the wonder drug that stopped working) and as in AML the current major enemy of this country boy. The consensus was unanimous. There just ain’t no good alternatives. So. I will do a 7 day induction chemo program, taking one drug 24 hours a day for that period and another for a three hour period each day, plus a big old syringe of some kinda red stuff that they take 15 minutes each day to push into my arm. They are using my old friend the PICC Line in my right arm (been there for a year now), and a new friend, a super IV port in my right arm. Between those I am getting three types of chemo, a super antibiotic and at least 16 various pills daily, not to mention2 stools softeners and a laxative to make “Johnny on the spot”, or would that be a frequent spot on the Johnny…..whatever! The jury is out as to if I will loose my hair…… won’t that be a spectacle, wake up with all my hair, head and body, laying around me like a bird’s nest……probably would not happen like that, but kinda funny to think about it. So far no adverse reactions to the chemo…….keep praying!

True to my wacky little analogy section -- “What would Bre’r Rabbit Do”? -- Remember Brer Rabbit is me, Brer Fox and Brer Bear are the bad guys……just tryin to do me in…..

OK….Brer Rabbit he not feeling really, you know, not tippy top good…..but he feeling OK, just one hippity after one hop, of course not like when he was a young rabbit, he could hippity hop out of just about anythin, just as sure as could be! But the years have taken their toll on ole Brer Rabbit, he won’t admit it but there is a hitch in his hippity hop, but you know this…..he’s a thinkin just as sharp as ever, only now when his mind says…Rabbit, you can do that, his body say, Rabbit, are you crazy…..but most of the time, Rabbit don’t pay no tention.

So……one day Rabbit is takin a slow hippity down his favorite country lane, not payin much tention anythin, and right otta the blue…..Bam…Swish….YeeHaaaaaa! Rabbit gets hog tied and swinged up into the air in the trap that Fox and Bear had set. The idea was to catch Rabbit when he was thinkin about other stuff an not payin tention to where he was going. Rabbit, he finds his self in pickle,

Fox, he thinks he finally got Rabbit. Remember, the story goes that Rabbit’s mind was still as keen as ever, it’s just his body that wasn’t keepin pace, so Rabbit he gets to thinking, yup maybe it will work! Might just as well give it a try, the alternative don’t look too good! Rabbit says Fox…”you got me far and sqware, after all these years, just won’t be the same……who you gonna chase after I’s gone….. who you gonna think about, who you and Bear gonna fight over, yup we had a good ride, but you won!” Rabbit looked over at Bear and seed big bear tears rolling down his checks. He see Fox look at Bear and then real quick back at him……. “No he say……Bear noooooo…..don’t you listen Bear!” By this time Bear was making giant bear steps toward Fox, he grabbed Fox by the neck and blimity blam he whopped him right on top of the head, old Fox he lay low…. He seeing stars. His head goiin roun and roun…..he drop Rabbit…… Bear unties rabbit and shoos him off…… bear watches him run off, but hollers “we gonna get you Rabbit….we gonna get you” Rabbit he chuckle and belly laff, head straight to his Laaughin Place and there he laff and laff and the storel of the morey……no matter what happens, there’s always a way to get back to your Laughin Place……where’s your Laughin Place?

Getting Your Teeth Into It!

2010-08-08T21:14:00.000-07:00

As the title says, the phrase refers to really getting into a project, and that's just what I am doing, literally! So far, I have been able to dodge the lung operation as the "spot" has been decreasing in size. Am in the middle of another 4 week waiting period to see what that "spot" is going to do next. If I have not told you, the option of a bone marrow transplant is "on the shelf" until the "spot" is gone and my teeth are gone. That brings us to the next part of this story. I just finished a 5 day stay in the hospital during which all my teeth were removed, what a experience that is! They removed the uppers on Tuesday and the lowers on Thursday, home on Saturday. Having has gum diesease for many years, there was a lot of bone loss, so in order to be able to stitch the gum tissue back together, more bone had to be removed to make room. Under local anesthesia, the cracking and popping noise as the teeth are removed is amazing. I currently feel like I have a pocupine in my mouth with all the short ends of the stiches poking me, they are supposed to dissolve eventually.

The low blood counts associated with MDS required a total of 4 units of blood and 3 units of platelets to be administered over this time period. There were 2 days that I ate very little if anything and combined with the morphine administered for pain control, one nasty case of constipation occured, fortunatlely with the wonders of modern medicine, it eventually worked out OK (did it ever). During the entire hospital stay, was receiving an IV of antibiotics every 6 hours and now will continure those in oral form for the next 4 days. Needless to say this was NOT one of the best experiences of my life.

It is amazing how much you miss your teeth, the way you form your words, the connection between fluid talking and the brain, not to mention the abrupt change in diet consistancy. Will be at least 8 weeks before dentures may be fitted and as long as 6 months if a bone marrow transplant is done. Back to the doctor on Thursday to start chemo again and get a roadmap for the next leg of the adventure.

Try ing to keep things light, and continueing my anaolgy of the Brer Rabbit........Now you know, it's a comman fact that when a rabbit is petted, and is content, it will softly grind it's teeth. Things are no different with my analogy of Brer Rabbit (me) and Brer Fox (the diesease) as told on the Tales of Uncle Remus. Brer Rabbit sure ain't contented and even though being petted don't have no teeth to grind. Is that somthin like not havin an axe to grind? Cause this rabbit sure ain't got no axe to grind. Folks round bout the VA hospital in Portland, Oregon could not be nicer, why I betcha theyd share a possum wif ya if they had one.....that's if ya had teeth. They try to feed ya what they got, but sure aint like I bin used to, well folks is folks, ya know, and you got to be thankful. So this rabbit is thankful and ole Brer Fox, well he just grind his teeth cause he bin set back agin, but I don't think I done seen the last of him. Anyway I is back in the Briar Patch where the air is claen the water sweet and the food is good.

I will be glad to answer any questions that are emailed to me.

Another Rabbit Trail

2010-06-15T22:34:00.000-07:00

I have always enjoyed the works of Joel Chandler Harris and his portrayal of the country characters of Brer Rabbit, Brer Bear and others, in fact, Disney's Classic "The Song of the South" was taken from these works. A rabbit trail is a good way to describe one of the diversions in my Great Adventure, so I think I will occasionally borrow from these colorful characters in order to better explain my situation.

Having experienced the biopsies to ascertain what had raised an alarm from the PET Scan, and receiving the news that both were benign, I kinda sorta figured that we were lined out on the road to Seattle. The one spot near my pancreas turned out to be unidentifiable "debris" probably from an earlier (1990) gall bladder removal. That biopsy was interesting in that sprayed my throat with some foul tasting stuff usually used as a local anesthetic and was asked to swallow a camera/tube/needle/knife thing while also being anesthtised by a general anesthetic, interesting timing, but I guess it worked. Then spooky part was that I could feel them moving that thing in my stomach and could hear them talking, it hurt, but I could not wake up, must have worked, after sleeping most of the day and enduring a sore throat a few days all was well. The other, a spot on my left lung was indentified as inflammation probably caused by some sort of infection. To find that out, you are placed in a CT Scan tube and the point of needle biopsy is locally anesthetised. Then they probe to get the exact point of the needle within the spot, confirming position with the CT Scan, once that point is reached, a sample is collected and examined to determine what it is.

Since that biopsy I have had a lung infection, coughing up blood to the extent that at one point a 6 hour visit to the ER was required, thankfully, that bleeding has stopped and the infection shows signs of leaving. Last Friday, a subsequent visit to an infection specialist resulted in my admittance to the hospital. After many tests and consultation with many doctors they decided that they had to have meeting concerning me, which happened on Monday of this week, so they let me go home at about 1:30PM on Saturday. Wouldn't you know it, that Saturday wa the first nice day in about 6 weeks......beautiful day! Today I got a phone call with the results of the meeting. Tomorrow, a breathing/lung function test, Thursday a pre-op evaluation meeting, Friday, surgical removal of the spot on my lung. Looks like about hours of prep/surgery/unprep, followed by 24-36 hours in ICU and that followed by 4-6 days of in hospital recovery and that followed by 6-8 weeks of waiting to see if the spot they removed grows any wierd bugs. Well, needless to say, our BMT in Seattle has been postponed and is now targeted for mid September.....maybe.... still have to get my teeth out and that has not been factored in yet.

Gotta end all this doom and gloom with a funny story! When they admitted me to the hospital last Friday, I walked up to the 5th floor and told them they had reservations for me. They were surprised to get a "walk-in" and showed my my room. A wonderful ward occupied by me, a dead guy and a guy almost dead.....yup, thats right sittin right there in a wheelchair with his slippers still on, they fella accross the way was not far behind him...... it was OK.... they didn't make a lot of noise, but I had the strangest feeling that the room I was in was not a good place. Eventually they took out the dead guy and the other guy was just hanging around, so I settled in to a endless round of doctors asking the same questions, temp/blood pressure readings and various side trips to get xrays an MRI and enought blood drawn to make up for a good part of the transfusions I recieved last year. That evening, the night nurse introduced herself to me and asked what I was doing in that room, explained that is where they put she promptly told me to gather up my stuff and get my behind into a private room where I would be more isolated......I see her now as big ole angel, sent by Father to get me out of that room.....he knows the desires of out heart.

Will keep you posted!

RollerCoaster Express!

2010-05-19T20:03:00.000-07:00

A PET Scan is quite an experience! The way it works is after a spot is picked up on a CT Scan, the next step in diagnostic imaging is a PET scan. They inject a sugar solution of radioactive material and let it circulate about an hour. The idea is that a malignancy is an active group of cells and responds to the sugar. The sugar is carrying a radioactive material that is picked up by the scan. If there is no activity, the spot does not "light up" as they refer to it. Rabbit Trail .... what does that say about people who have cancer and are eating sugar...... another side note, if you ever have to have a PET Scan, you are in this big machine for about 30 minutes, you are told not to move and your arms are stretched back and over your head, that gets real uncomfortable after about 10 minutes. When I got out I asked what did they do if a person could not put there arms in the overhead position. I was told there is an alternate position with your arms at your side.....doesn't give as good results, that's the one to opt for!

We got the results of the PET Scan.... looks like the spot behind the pancreas was nothing.....however, there is a spot on my lung, about 2 centimeters, that reacted to the radioactive sugar water. So now we have a problem... the spot could be a cyst, an infection or a malignancy. The only way to find out is to get a piece of it and look at it under a microscope. So this little hiccup has placed everything on hold. I get to keep my teeth for a while and the bone marrow transplant won't be done if there is another active cancer. They are still holding the time in Seattle pending the results of a biopsy on May 26th. I continue to feel good, strong but grumpy, this waiting business is not a good thing. On the upside, there is a spaghetti dinner at my daughter's house tomorrow night and I got the garden tilled today, we went to dinner at Sweet Tomatoes tonight, I have a full belly and all is good!

A Time for Grumpin!

2010-05-13T20:33:00.000-07:00

Maybe I am not in the best mood to write this entry tonight, but then, maybe I am. Got back from the VA today after a CT Scan and another Bone Marrow biopsy. Those by themselves have the potential to turn a beautiful Oregon spring day into something less than a rainy day in December and on top of that the doctor told me that the CT Scan had revealed a small mass on ny left lung and another in a lymph node near my pancreas. Tests will begin immediatley to determine the nature of those masses and for the time being we have cancelled the tooth extraction untill it can be determined what we are dealing with. Well, thats a good thing, but that also means we have to cancel my steak eating party prior to the extraction event. Currently we are still scheduled for end of June, first week in July for the transplant in Seattle, yet depending the outcome of these new tests, that may change also. Blood counts still look good and I feel great, worked all day yesterday making some modifications on the kennel and plan to spread barkdust and begin the pond filter tomorrow. We have another pond in the canyon and it is the most beautiful place this time if year. The elk have been using the area extensively and we look forward to seeing calves make thir debut any time now. A pair of mallards have setup home on the pond and saw a flock of geese drop in yesterday, as a bonus I have a new beautiful little 9lb grand daughter, healthy as a horse, MaMa is doing fine also, thank you ....... There, I feel better already just talking about the things I love. It is a good thing to live in today....my brother has a saying that he puts at the bottom of his emails....."yesterday is history, tomorrow is future but today is a gift, that's why they call it the present". Too often, I lament at what could have been and the dumb decisions I have made and spend way too much time planning and worrying about tomorrow, today was a beutiful day, full of turns in my Adventure of Life and I am now writing this to people in my life who care..... so, maybe I'll go get a dish of ice cream......why don't you do that also!!!!!!!!!

Now....the waiting!

2010-04-22T14:02:00.000-07:00

Encouraging signs continue! Nurses say I have responded exceptionally to the drug Vidaza. Blood counts are almost back to the low end of "normal" and I feel really good. Instead of weekly blood tests they have stretched to monthly and I now am on a cycle of receiving the drug for 7 days and then off for 5 weeks, I still need to have the dressing on the PICC changed weekly.

They have commenced a series of tests that include X-Rays, EKG, CT Scans, Kidney, Liver, and teeth. I even got to visit a shrink to make sure my elevator was going all the way to the top.....hummm, wonder what she found! One thing I can say for sure, the dentist says all my teeth have to go! Swell, toothless in Seattle! Concern is that the gum diesease that I have experienced for many years will give opportunity for infection when they kill my existing blood cells. The VA will remove my teeth but I will be responsible to get dentures, maybe I'll get some chrome ones. The teeth I have are all worn out! They have served me well, the front ones are worn so flat I can't bte off a piece of pepperoni on a pizza, now that's bad......oops, forgot, not supposed to be eating pizza, well I'm sure that a couple times a week won't hurt! Gonna be like loosing some old friends.......

I have been able to do much of the work I used to do, lawn mowing, building stuff, tractor/bulldozer work, getting th garden ready, etc. Seems like each drug cycle effects me a little less and I get stronger after each one. I wonder how I would know if maybe the drug or God has answered prayers of many, many people and perhaps I would not need a transplant, nurss say thaey had never had anyone respond as well as I have, so that is a question that are researching.

My Oh My Oh My!

2010-04-02T13:44:00.000-07:00

It is official! My little sister Kathy is a perfect match to be a donor for a bone marrow transplant for me! Think about it, a 25% chance that one of my 3 siblings would be a match and she was. When I told her she was happy and concerned at the same time, which is completely understandable. I live in Oregon, she in New York State, the transplant will be done in Seattle. She is the director of a special needs school that begins summer break about the time that they want to do the transplant, so she will button up all her responsibilities at school and hop on a plane to meet us in Seattle and have life's blood sucked out of her, not necessarily how she planned to spend her vacation! The turmoil that it will bring to her and her family's life will be immense.....the Greatest Teacher once said "greater love has no man than to lay down his life for another..... I think she must be understanding those words in a way like never before. Thank You Kathy!!! Somehow, "Thank You" sounds so empty and how can one ever "pay back" such a sacrifice? The gift of life is unpaybackable... is that a word? Well I'm sure she will think of something.

Toward the end of June we are scheduled for a bone marrow transplant in Seattle. A wonderful 3 month stay in the "Rainy City" full of sight seeing, ball games, fishing, hiking, resturants and the like..... NOT! I can think of lots of things I would rather be doing, but if I don't do this thing those "lots of things" will never get done. It is tough for a person who has always been very active and enjoys life to become sedentary and dependant, this getting old thing is not how I planned it. Supposed to be fishing, barbeques, training dogs, finishing up the landscape around our ponds, doing outdoor photography, gardening, cutting firewood and enjoying my kids/grandkids, not necessarily in that order. Instead will be exploring the details of hospital beds, needles, IV's, special diets, restrictive lifestyle, city life surrounded by complete strangers....whom I am sure will be good friends by the time this all over.

The adventure continues, my wife says it is a journey, but I disagree, a journey begins at a certain point, travels a given route and ends at a certain point..... an adventure begins at certain point, but you don't know where it ends and what will happen along the way.

That Light in the Tunnel is NOT the Train!

2010-03-04T20:25:00.000-08:00

Best Good News Day in a long time! Had meeting with the Oncologist today, blood counts took a big jump and are almost back to normal, and she took me off the antibiotics I was taking to fend off infection. Said the drug I am taking is "working wonderfully" and could not be more pleased. Released me to be able to go to a restaurant or store and most important told me I can do anything that I feel strong enough to do. Warned against lifting too much till the hemorrhoids are fixed but OK to eat dairy products again. Still need weekly blood tests and continue drug on a 5 week cycle. The doctor in Seattle (Chauncy) is very conservative and unless we get a good match from siblings will be cautious to proceed with a BMT because a match from the national pool may be not as safe (because of my age).

Did you notice that I kinda skimmed that little statement about hemorrhoids.....well last Friday came down with a mega case of the "Big H" after a bout with constipation (probably caused by the drug). The advice nurse said I better go to ER because of possibility of infection. Well, Sharon was busy with pups so about 9:30AM called my good friend Don and he readily gave up any plans and said "Let's go".....it is a good thing to have a good friend! Long story short, at about 1:00PM finally got to see a doctor, took one look and said "Uh-Oh", now from patient's point of view "Uh-Oh" is not what you want to hear, especally when it is followed by "I think I better call a surgeon". Seems she thought I had blown out my backside.....when the surgeon arrived he said it was ONLY a great big Old Hemorrhoid. So....I was wondering if this should make me feel better..... when he said I think we better put you to sleep and see if we can push that back where it belongs, I definetly did not feel better!

After listening to the goings on next door when they brought in a guy who had almost blown off his hand and looked like a 4th of July hot dog after he had tried to cut the top off a 55 gal drum with gas in it, I figured out maybe I wasn't so bad off. Especially when they had me coumt backwards from 100, I think I got to 96, and then I woke up and asked the nurse when they were going to start, she pointed at the clock and almost an hour had gone by, so I asked her why I still hurt, she peeked and said "Damn. it popped back out" and proceeded to call the surgeon. Now, that is not really what I wanted to hear either and when the surgeon said "there is not a whole lot more we can do" I started getting used to hearing things that I really did not want to hear. We got home about 7:30PM that night, in about the same condition that we left. Carrying a shopping bag full of pills, powders, cushions and creams, encouraged by the admonition that "it should go away within a few weeks......by the way, PreparationH does not do a whole lot for me. I have a fancy new cure ordered from the web and I think things are starting to calm down back there, by the way, I know first hand what it means to be a "pain in the ass", and think I know where that term came from.

This too will pass!

2010-02-12T11:33:00.000-08:00

How often do we make plans, begin projects and carry on like nothing will ever change. I for one felt invinceable for a long time. When something comes into one's life that radically adjusts the direction it is quite an experience to manuver to the new direction. Working on a boat for almost four years, fine tuning a successful dog breeding business, choosing seeds and varieties for the garden, anticipating more grandchildren and teaching them to fish and hunt, pursueing a photography hobby and grooming our property as a haven for recreation and wildlife. Our lives have the ability to change very quickly and the effort to salvage what is left of our plans can be a real exercise.

Administratively, the wheels have begun to turn to collect data and schedule time for a Bone Marrow Transplant in Seattle. Necessary blood tests and typing come first with a 25% chance that one of my siblings will be a match. If we do find a match the lucky donor will receive an all expense paid trip to Seattle in order to have a 2 week vacation with their big brother. There will be many fun things to do that include daily excursions to a local hospital where various tests and inquiries are planned. The lucky donor will then be treated to trip to la-la land where a general anesthetic will be administered and bone amrrow will be sucked from their pelvic bone, about an hour later, they will awake now fully aware what a "pain in the butt" it is to have a big brother with MDS.

While all these wonderful experiences are happening, I will be the recipient of two cocktails called chemo and radiation. Once those are consumed I am technically dead...... hummmm what an experience that will be! At that point, with my bone marrow, having been totally obliterated, my new friends in Seattle will take the bone marrow that was graciously given by the donor, and inject that into my poor old body where the bone marrow stem cells will take up housekeeping in my now vacated bones, happily creating new red and white blood cells and platelets. Some three months later, when all goes well, I will resume making plans, finishing projects and carry on like nothing will ever change........NOT!!!

Amazing how perspectives change when we are forced to view a situation from another place. New plans will include finishing a boat, maintaing a dog breeding business, choosing seeds and varieties for the garden, teaching grandchildren to fish and hunt, pursueing a photography hobby and maintaining our property as a haven for recreation and wildlife. Please note, there is a difference between the before and after.

IHLETNT

2010-01-27T20:03:00.000-08:00

The title of this blog post is an acronym - I HOPE THE LIGHT AT THE END OF THE TUNNEL IS NOT THE TRAIN.......

Well today after 12 days of waiting we have results from the most recent bone marrow biopsy......positive, blasts down from 18% to 5%.....this is a good thing! An adjustment in meds is required as they are killing too many good cells....OK adjustments can be a good thing, now comes the big decision.....do we go for a Bone Marrow Transplant!

When one looks at the factors involved, this one wonders why he is even looking at it. Consider.... you move to Seattle for at least a couple months, OK pretty good seafood, lots of waterfront and I'm sorta used to it raining every day by living in Oregon. I don't think seafood is something I can eat and the waterfront is off limits because I will have -0 immunity, but I think I am starting to like the rain, one out of three isn't bad! Now, if I have this straight, first a PERFECT match must be found for your bone marrow. Hummm, if none of my 3 siblings work then they go to a 300,000 person database and look for a match. I wonder if they know that I have a tough time picking the pea under 3 walnut shells, let alone trying to win the lottery, but wait, I think I got one number once. We can cross that bridge when we come to it. If we get this far, then they put you in a sterile environment and kill what few remaining functioning blood cells you have. You now are technically dead I would think, that might be interesting! Then just before you start getting cold, they pump "The Perfect Match" bone marrow cells into your arm and somehow these little critters know to head for the inside of your bones......amazing, given the fact they have never been in your body before. You know, I have some strange things that go on in my body..... I smell pizza and I automatically sit down, I eat bad hot dogs or sausage and my toes swell up, I can't straighten one little finger, there's not a lot of hair left on my head and too much on my back and on and on......how in the world are those little cells, after hanging out in a body that works, going to find their way round in mine? I guess, that is one of the mysteries of the universe...sure hope Dr. Ola has that figured out. Enough of that rabbit trail!

Once you have a strangers life blood trying to figure out where to go inside you, you just wait.... and wait....and wait..... and wait..... after all, those little critters have to figure out where to go and wait..... and wait. I wonder if we could find some real little GPS devices and put some waypoints in them, then teach those little critters how to use them. hummmm,oh never mind.

If those little critters survive and eventually find a new home, now they have to like it! Hope they like pizza and spaghetti and meatballs, Rubin sandwiches and hot dogs and hamburgers, because that is what they are going to have in this body. If they are some kind a vegetarian cells then we are all in trouble, there is this rejection thing that happens, science says it is some kind of auto immune reaction, but I know it's because they don't like Italian food. Gonna see if Dr. Ola checks for that in the screening process.

I just wonder if this old man wants to go through all that stuff....they say I am "robust" that is why I can qualify for a BMT (bone marrow transplant) I wonder if I am "robust" or that price tag that I would run up would have anything to do with it. Speaking of BMT makes one thing of a BLT (bacon, lettuce and tomatoe) this one would much rather think of a BLT.....now that is something I can handle!

I Think I Can I Think I Can, I Think I Can

2010-01-16T21:33:00.000-08:00

OK....the Great Adventure continues..... yesterday we expeienced the 2nd bone marrow biopsy, all I can say is OUCH! However, we now have a different attending doctor, Dr. C has replaced Dr. A, I guess Dr. C is more experienced in my stange and mysterious malady....I hope so! A Bone Marrow biopsy is something akin to drilling for oil an the 10000 ft level, first you find a suitable place, usually on the point of your hip bone at the small of your back then you clean out all the underbrush and bring in the drill rig. In my case a 120 lb doctor was determined to strike the mother lode somewhere deep withing my pelvis bone, no matter the bone had been forming for 67 years and resembled granite, she was determined. Thankfully, novacaine helped cover the pangs of a very stout needle (pipe) as it pryed and worked it's way to the mother lode, ocasionally she would ask if I was OK and I assume the grunt that I uttered was sufficient encouragement to continue her quest for the "mother lode". Even though I was assured that bone does not have nerve endings, somehow the anomoly of my DNA must have decided put some there, and they were working perfectly! Finally a breakthrough and a few moments of quiet led me to believe that they were sucking what little functioning bone marrow that I still pocessed into a tank for furthur testing, at last those wonderful words "there we are all done" were uttered, and the drill rig was removed.

Seriously, Dr. C did a fantastic job, I had been dreading the biopsy, based upon the performance of Dr. A and was amazed at the difference between the two doctors. Dr. C proved to be very professional, a great beside manner, very competant and quick. She took about half the the time as Dr. A and the pain was about half as much as I experienced in the first biopsy.....Good Job Dr. C!!!! Will be about a week before the results are back and based upon those results we will talk about furthur treatment. I continue to feel stronger and generally not as dumpy, in fact, better than I have felt since I crashed in October.

During the last week we have had 19 puppies born 14 from Amber. Nine huge pups were unable to be delivered by Gretchen (a chocolate Labrabor) so Saturday morning found us at the vet's office for an emergency C-Section, Seventeen hundred dollars later, we had 5 live pups. Needless to say Sharon was very busy trying to care for the pups as well as keeping up with everything else.....but somehow you manage to keep going, Thank You Father!

2010... And Still Verticle!

2010-01-03T15:25:00.000-08:00

Holidays are behind us, as is two cycles of medications. I am cautiously optomistic that I feel better. This morning I was able to do the dog cleanup chores, then promptly came in and fell asleep. Now starts a 3 week resting period where, I presume, they give your body a chance to regroup and recover. Sometime during this cycle or the next, I am told that another bone marrow biopsy will be taken (I am really looking forward to that...NOT) and based upon the results of that test, a descussion will be held concerning the feasibility and possibility of a bone marrow transplant. So it looks like what has begun in 2009 will continue well into 2010.

I am finding that it is easy to give and to help, and most folks are really willing to do that....however, it is difficult to ask and difficult to receive, especially when you are the only one that knows how to get something done right :). I found that I have stayed busy to long and now all those things that I really would like to do, are for the time, being beyond my reach. Seems to me we should all take retirement for 10 years when we are young and then work till we die. I am tired of "what ifs" and have resigned to live on a daily basis, at least for now......

Merry Christmas Update - from the Adventure

2009-12-20T15:46:00.000-08:00

Here we are, almost at the end of the 1st med cycle (7 days of meds, 3 weeks recuperate) and will start another cycle next Tuesday. Can't say I have noticed any difference that the meds are making, but can say there was a great difference last night!

I was laying in bed and I called Sharon to check out my swollen left foot. For those that don't know, I have had a continual case of gout since the 2nd week of October. Docs were hesitant at first to give me anything for it, but eventually caved and started me on 2 medications to prevent my body from manufacturing excessive uric acid (cause of gout) and another to help be get rid of uric acid, both minimal doses as both can cause a negative reaction with bone marrow, which is certainly something I don't need right now. They pointed out that they could not do anything about quantities of red blood cells that would be dying in my blood stream (because of the medication) and causing uric acid. Along about Dec 10th, it seemed the gout was beginning to subside, but on the 15th came back with a vengence, big toe, left foot, needless to say I was not experiencing the joys of the Christmas Spirit. OK...OK..back to my story, like I said I called Sharon to check the size that my foot had swollen to, she said it did not feel feverish, but sure was swollen.......

I got up this morning, no swelling, no pain, no stiffness in either foot, excited, I told Sharon and she simply said well I prayed last night as I was looking at it. After doing a quick little Texas two-step with her and heartfelt thanks to our Heavenly Father, I proceeded to do the dog chores (with her help) and was able to get around just fine.

Still feeling tired and washed out, some sores in the mouth and some minor fungal infections, all were expected and am taking drugs to help my immune system fight off the bad guys, but what a blessing to have feet not hurting! Docs don't expect to see much change in blood counts till after the 3rd cycle, but one bright spot, I did not need a transfusion last Tuesday, 1st time in 3 weeks :), so for now it's a continual cycle of supplements and products from the juicer. I am not supposed to go anyplace where I could pick up a bug or be around people with colds or flu.......that's a trick for the Holiday Season.

I wish you all the most blessed and happy of holiday seasons. Remember wise men still seek Him!

The Adventure Continues

2009-11-24T21:08:00.000-08:00

I was full of hope when I went to the Oncologist last Thuesday, I was starting to feel better and it seemed my strength was returning so I fully expected better lab test results, to my surprise, they were worse. Platelets were down to 10, other readings remained about the same. My doctor was genuinely concerned that I was procrastinating and explained again that if the MDS progressed to full blown leukemia (AML) it would be much harder to treat. So reluctantly I agreed to begin treatment the following Monday. After telling her I would get a list of ingredients from my Naturopath, that he was using, we scheduled treatment to start the following Monday. At that point she told me I needed to get 2 units of blood and 1 unit of platelets within the next few hours. Wow, I thought we were past that, what a kick in the pants.

Went right to the Chemo Lab where they explained the whole drill to me and proceeded to draw cross & match for the infusion. My arms were a mess from a week of IV's at the Naturopath and after 5 unsuccessful attempts to find a vein, I passed out, they called a code and I created quite a commotion, needless to say everybody involved knows who I am now. Even the chaplain was there!

They finally got an IV placement and I proceeded to take 2 units of blood and 1 of platelets, we got out of there about 6:00PM, a long day! Thank God for neighbors who readily pitched in and fed the dogs while we were gone.

I am concerned that my Naturopath has not responded as I requested..... I guess he is busy.

Tuesday - 11/24/2009 - Well, we have started alleopathic treatment for MDS...... today they (VA Portland) got everything in a row and we started a treatment of 6 - 7 cycles, (7 days of IV then 3 weeks of weekly lab tests) is one cycle. The drug of choice was Vidaza. We were supposed to get a PIC (semi-permanent IV catheter that enters your right arm and sits about 1 inch above your heart) placed yesterday and begin treatment then, but somebody dropped the ball and it was not scheduled, so we went home. Today it worked OK, well kinda, after the initial attempt to install the PIC an XRAY showed it was too deep so they had to pull it out a little, once that was done the labs we done (no poking) :) and treatment was accomplished. I was encouraged that labs showed that blood counts were up a little, probably because of the insusions last Thursday.

Delivered the last puppy to their "forever home " when we got home.....that will ease things a bit for Sharon, what a trooper! Made some phone calls to hire someone to do daily chores with the dogs. Too much for Sharon, much will be said about a caregiver later. Also contacted a friend to replace the engine in my broken Suburban, we will need good four wheel drive transportation for this treatment schedule through the winter. I notice that one of my biggest adjustments is acceptance that I can't do it all like I used to. Acknowledging that I need help is difficult for me. My boat calls from the barn to be finished.....so close, yet elusive in my present condition, better days are coming!

Just an observation..... I think receiving treatment from a VA facility will be much like treatment under ObamaCare. The staff is great, could not ask for better, compassionate, caring, professonal, however very overworked. The volumn of patients is amazing. That place is like a city to itself. One must not assume that things get done, but take charge yourself to oversee your care.

Some Progress

2009-11-15T18:27:00.000-08:00

Finally the gout is starting to clear up in my feet! What a blessing! MDS is an issue that makes you tire easily and feel kinda punky. Today is the first day that I have been able to clean out the dog's kennels without sitting down and resting while washing them down. That was encouraging to me. The real story will come this week when new blood tests are run. Any kind of improvement will be an encouragement and validation that we are on the right path.

The First Step!

2009-11-09T20:24:00.000-08:00

Finally came the day when we found out what the Naturopath was suggusting in addition to what the VA is suggusting, as I expected, the approaches are quite different. We will start a marathon if 4 IV's per week on Mon, Tues, Fri & Sat. in between we will take different medication including nebulizer therapy. OK, I know it sounds far out for cancer therapy, but the VA alternatives are not very promising. I am exciting about starting this course of treatment from a position of relative sound health of mind and body as opposed to being decimated by chemical treatments that attempt to kill the very substance we are trying to save. We start tomorrow and continue till..........

Finally.... the Big Meeting!

2009-11-07T20:48:00.000-08:00

Had the meeting that I was anticipationg for about a month.....well not anticipating kinda like this
Met a specialist today at VA. She comes off as intelligent, compassionate and connected in the community of MDS/AML specialists. Based upon current lab results she ordered 2 units of blood. She suggested the traditional form of treatment that consists of Chemo and ultimately a Bone Marrow Transplant. I explained my concerns about traditional treatment and in particular chemo, she agreed that results have not been great nor have they changed in 30-40 years. However it is still the best option for MDS/AML. Her major concern is to not allow the MDS to advance to AML which is determined when blasts reach a level of 20%. She did not mention any nutritional factors of treatment which I questioned and by her answer indicated that any alternate treatment was not something she had studied. Prognosis without treatment is about 11 months survival with treatment about 18 months (median averages).

My major takeaways from the meeting were:
1. VA will partner with me and support me in any mode of treatment that I choose. (including alternate)
2. I have a type 2 version of MDS and am currently at 15% blasts
3. The type I have is called Refractory anemia with excess blasts RAEB II: 10-19% marrow blasts. Blasts normally develop into red blood cells, white blood cells or platelets. In MDS, the blasts are abnormal and do not develop or function normally.
4. I may choose whatever course of care I wish and VA will support that. Primary courses of care are:
     a. Supportive care - The goal of supportive care is to manage disease symptoms and related problems.

     b. Chemotherapy - The three medicines approved by the FDA to treat MDS are azacitidine (Vidaza®), decitabine (Dacogen®) and lenalidomide (Revlimid®) (The names inside the parentheses are the trade names for these drugs.) Azacitidine and decitabine are approved to treat all types of MDS, and lenalidomide is approved to treat only the 5q- syndrome type of MDS.

     c. Bone marrow or cord blood transplant - The only known treatment that can bring about a long-term remission from MDS is a bone marrow transplant (BMT) A BMT replaces the defective cells in a patient's bone marrow. The cells used in a BMT can come from bone marrow, peripheral (circulating) blood, or umbilical cord blood.

Clinical trials are an option which are being explored potentially in Seattle.

The next appointment is in 2 weeks (Nov 19th) and we will determine the course of treatment provided by the VA at that time.

Some Good News!

2009-11-04T16:50:00.000-08:00

Went to have a ultrasound to confirm the doctor's proddings for an enlarged spleen...... nope! even was a little on the small side.... huuuummmm, kinda interesting!

Alternative Inquiry

2009-10-31T12:58:00.000-07:00

In an effort to realize what the entire range of treatment options include, we are exploring naturapathic treatmets as well as conventional treatments. Research has shown that conventinal methods leave much to be desired. It sems to me that unless a method or therapy can be patented, in order to insure profit, that method or therapy is not considered or even ridiculed in an effort to preserve the monopoly of "Big Pharma". I will not not point out particuliars here, but you may certainly contact me for details, suffice it to say many have been persecuted and maligned to the point of incarceration in order to stifle dissenting voices.

Yesterday, Friday Oct. 29th we had our first meeting with a Naturapath which we found from reviewing many resumes and specialties of practice which were posted online. I will post details and identification later in therapy, however our initial 1 hour and 15 minute interview was entirely without charge.

Interesting comments that came out of this interview included:
1. Probable cause was damage to DNA/chromeosome by herbicides and pecticides that I have handled throughout my farming activity.
2. Prognosis is "good"
3. Diet/nutrition is extreamely important.
4. Integrated therapy is totally possible. That means conventional treatment and alternative treatment may co-exist. More on this later.
5. Although not specifically stated, it is my understanding that starting from position where my body has not been decimated by "chemo" is a definite advantage.

Coming from this meeting I was encouraged. To know that there are alternatives and those alternatives may be quite effective was settleing time. A definite decision as to the specific course of treatment will not be determined until after my meeting with the VA oncologist/hemotoligist on November 5th.

To complicate the issue, I was taken off a prescription to control gout with the onset of this condition, you guessed it, I have gout. That has me anchored pretty well and would actually feel pretty good if it were not for the gout. Doctors do not want to make a decision on medication to control the gout until after the decision is made on the general course of treatment is made, I guess that is OK as I am not supposed to be in public places (concern for infection, flu, etc).

An interesting turn of life events

2009-10-29T19:32:00.000-07:00

Well, interesting turn of life...... I (Joel) have been diagnosed with a blood disorder condition call MDS the old name is "pre-leukemia", a preliminary report from a BMB (bone marrow biopsy) has confirmed that I am borderline AML (Acute myelogenous leukemia).

Myelodysplastic syndromes are bone marrow stem cell disorders resulting in disorderly and ineffective hematopoiesis (blood production) manifested by irreversible quantitative and qualitative defects in hematopoietic (blood-forming) cells. In a majority of cases, the course of disease is chronic with gradually worsening cytopenias due to progressive bone marrow failure. Approximately one-third of patients with MDS progress to AML within months to a few years.The usual progression of this diesease is into something called AML (see below)Acute myelogenous leukemia (AML) is a fast-growing cancer of the blood and bone marrow. In AML, the bone marrow makes many unformed cells called blasts. Blasts normally develop into white blood cells that fight infection. However, the blasts are abnormal in AML. They do not develop and cannot fight infections. The bone marrow may also make abnormal red blood cells and platelets. The number of abnormal cells (or leukemia cells) grows quickly. They crowd out the normal red blood cells, white blood cells and platelets the body needsI am currently borderline AML, additional evaluation of the bone marrow biopsy will indicate what type or risk factor the MDS is currently in and a prognosis cannot be made until that type is determined, nor can recommended treatment be determined until those tests are in, but will probably include chemotherapy.

The hematologist/oncologist is transferring me to another doctor who specializes in this treatment. I will go and have additional lab work done tomorrow to determine the stability of the MDS and the need for additional transfusions. They have cautioned me about doing anything that may injure myself or be in places where I may pick up an infection.My concern is not death, I see that as a great adventure, but so many "loose ends" and things I want to do. I feel good and do not do well "doing nothing".

Will try to keep this blog up to date as a tool to let everyone who is interested know what is going on and also a resource for others who may be navigating the same waters.

Winter 08

2008-12-23T19:21:00.000-08:00

We left Western New York State, over 25 years ago, amoung other things, to leave the snow and ice behind, well it worked, till this year, the temperature has been below freezing for over a week and we have about 14 inches of snow. I thought I would hop on the ATP and check the pond (another story) that we build this year, made it halfway and decided not to go any furthur, even in 4 wheel drive had a tough time getting home.