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.
Friday, February 12, 2010
Wednesday, January 27, 2010
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!
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!
Saturday, January 16, 2010
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!
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!
Sunday, January 3, 2010
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......
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......
Sunday, December 20, 2009
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!
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!
Tuesday, November 24, 2009
The Adventure Continues
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.
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.
Sunday, November 15, 2009
Some Progress
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.
Monday, November 9, 2009
The First Step!
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..........
Saturday, November 7, 2009
Finally.... the Big Meeting!
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.
Wednesday, November 4, 2009
Some Good News!
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!
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