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!

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 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!

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!

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!

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!

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

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

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!

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

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!