Sunday, November 6, 2011

It has been a long road!

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 amazing woman, I cannot think of any anyone who is like her........a blessing from God for me that I can't expain.

Saturday, December 11, 2010

The Two Step - Second Round of Chemo Done

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 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 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 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.

Friday, November 12, 2010

Day 23 - Almost got me!

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 if you find them

Monday, October 25, 2010

Day 6 - In the Hospital

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.

Friday, October 22, 2010

Surprise - Day 4 in Hospital

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 click this link below if you want see this post with pics pics:
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 " 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.

Tuesday, October 19, 2010

Surprise- Surprise - Surprise

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 ( 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

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, 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?  

Sunday, August 8, 2010

Getting Your Teeth Into It!

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.

Tuesday, June 15, 2010

Another Rabbit Trail

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!

Wednesday, May 19, 2010

RollerCoaster Express!

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!

Thursday, May 13, 2010

A Time for Grumpin!

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 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!!!!!!!!!