The Maybe, Not Really, But Actually Could Be, Bucket List

So he hands me a journal note book and a pen and he asks, "Would you start writing down stories that you have used over the years"? It was one of those times we had determined I had more time on my hands than I knew what to do with. I wasn't sure what he was getting at, but it has been there in the back of my mind nagging at me.  So I have decided to honor his request because I take it as a great compliment that Isaac should ask me to write, since he is such a great writer. Now I think it is important to note that stories told and stories written are not always the same. If I used a story in a sermon there were all kinds of advantages to the oral setting and spoken word. Trying to write that same story down on paper doesn't always communicate the same way. It is a different medium and involves a different skill. What Isaac was remembering was oral. Writing? That's a different beast for me. Remember? I so good at am not nor to become not likely very good. I am, however, going to start down that road since I'm at home twiddling my thumbs on Christmas Eve while they have headed off to Church and I'm at home avoiding crowds.  So I will start the endeavor or endeavor to start and this story tonight has special memories for us at Christmas because it is has to do with The Story.


The text that night was from John 1:14, that part about the Word becoming flesh and dwelling among us. I remember wanting to illustrate the experiential side of the story because the "dwelling among us" has the sense about it of "pitching a tent" and living with us. The story that came to mind was, of when Isaac was about 2 or 3 years old. It was night time and he was in  his crib in his room next to ours sound asleep. A storm comes up and it starts to lightning and thunder and he starts to wake up. In the dark he says, "Mommy, daddy, I'm scared". I call back, " Just lie down and go back to sleep. We're over here and you"ll be alright". It's quiet. Then more thunder. "Daddy, I'm still scared". "You're okay." I said, "Snuggle up with your stuffed animals. We are over here. You'll be okay". Ah.Quiet. See it worked Then there was more thunder. "Daddy, mommy I'm still scared". What to do. Try again. I said, "Isaac, you're okay. You have all your stuffed animals. Mommy and daddy are over here and God is watching over us and will keep us safe". (preacher types do that) Quiet again . And then softly from the other room came his voice, "Daddy, I'm still scared.  I want something with skin on it". Of course in a few seconds he was in bed with us.


In the middle of the dark night of this life God became flesh, literally puts on skin and dwelt - pitched his tent and lived in this world with us, because we were afraid crying out in the night.


To all of you from all of us Merry Christmas. Love abe and lynne


P.S. This is a true story and has been used by others and become almost public domain. I will vouch for that, in fact, Isaac , when he was about 10 negotiated a fee from me for using his story. I guess I owe him another $10

Being A Hermit In The Woods

Some of this is self evident. I must take precautions. Sometimes easier said than done. I must avoid contact with all possible sources of colds, influenzas A,B,C on through the alphabet, viruses or any other possible sources of infections. That translates into staying clear of places with high people traffic, contact with people especially during the flu season, no shaking hands, frequent hand sanitizing and all those things to protect myself. So Dirk, I will endeavor to work harder at being the hermit. It works well for me right now and it kind of grows on me.

The Wearing and Tearing

I carefully make sure the thermometer reads below 98*, and put it under my tongue and wait. For those few minutes I am in suspense. It's not the suspense of unwrapping a present. No not at all. This suspense seems to wear away at the insides. Some history here might help put this in perspective. With the leukemia my immune system is compromised. I can not fight off the things I used to be able to fight off. I have been told repeatedly, lectured many times, and admonished over and over again, to watch the temperature. IF IT GOES OVER 100.4 GET TO MDA EMERGENCY. NO IFS, ANDS, OR BUTS. On 2 occasions that has happened. I have ended up in the ER and been hospitalized with infections of unknown origins. These symptoms usually start with a cold or the flu or a virus. Those were not good memories. The last infection happened on the day Josh died. I had had chemo that week and we were all together in Dallas because Josh's condition had deteriorated so badly. That Sunday morning he died. I had not been feeling well and had been vomiting. By the time we got back to Houston I began to get worse. I went to bed and woke up with a fever. That was "the Deputy escorted trip" to MDA at night and the hospital stay that had, the heart wrenching grief of losing Josh, and my own illness, all mixed up together and  I was trying to get better so I could be at his funeral with the Dr. allowing me to go home with IV antibiotics that I would administer at home and was still doing the day of Josh's funeral.
                                                                                

 All of those associations are there. Lately I have had some cold symptoms. So I'm taking my temperature. The Bounty from the last blog is now doing double duty for nasal as well. I am taking my temperature frequently. I am monitoring for chills and sweats. I had felt chilled earlier in the evening and used a heating pad when I went to bed. About midnight I began to warm up and toss back the blankets. I was feeling warm. Almost sweaty. Now I'm AWAKE. The real test is my temperature.  So as I try to read the thermometer I feel the suspense. In that moment, maybe not consciously, but felt none the less, is all of that emotion of Josh's dying, my having cancer, and my always being at risk of an infection that could kill me.  As I roll the thermometer I see the temp. 98* and not a bit higher. I exhale. In that 5 minutes a lot of emotion just bowls right on through and that's the wear and tear of the disease. CANCER SUCKS AND IT CHANGES EVERYTHING.

It's Four In The Morning

It's 4 o'clock in the morning. I am sitting in a lawn chair watching over 2 briskets smoking in the pits having my 2nd cup of coffee. It will take about 10 to 12 hours at 225 to 250 degrees. I'm not an expert nor an old timer. Enjoy it  though I do - the process - the wait - and the taste. It's festive. I have been looking forward to doing this for some time now. The fire is just about right now at 250, give or take a tad. Good enough. Not rocket science but good enough. Why would I sit in 50 degree weather tending fire boxes watching meat cook at 4 in the morning? It's cold. It's dark. It's smokey. It's fun and it's tradition. Here's what I'm thinking is happening. I'm beginning to do "bucket list" type things. I'm beginning to look at things like Christmas and the seasons and the visceral feelings that go with them, the leaves turning on not just the trees but on the red oak I planted in the front yard at our old house, and the elm that is growing in the garden area that just showed up and the color is a shade of yellow that I never much cared for, that is until Josh had said he liked that color so I do now as well and the citrus trees Isaac and I planted this spring after last winter's freeze and the savoring and ceremonial eating of the handful of fruit especially the navel orange. I'm beginning to approach things with the notion that I want to savor them and extract out of each and every experience, all that I can. Why? I am going up against a procedure, the Stem Cell Transplant, that can extend my life and in the process of doing that, it can also end it as well. Morbid? Could be. Pessimistic? Maybe. Whatever it is,  it is real. The result. I want to enjoy, to the fullest, those days I am given and savor the flavors the days have to offer. Today the flavor is Texas Brisket. It's not just for today but some will be saved for the time the hospital food needs some enhancement. I"m really, really, really looking forward to that brisket for the present and for the tomorrows I have.

Bounty Instead of Kleenex

It is Sunday morning and I have always been an early riser and mornings are often a mixed bag. I have coffee. I may do a load of dishes, clean up the kitchen, watch the news, do my physical therapy exercises or whatever. The last few days I have become aware again of my CANCER and this morning that was acute. Yes, I live every day with this disease, however for a few weeks now I have been able to forget about it somewhat or at least its below the conscious radar. The last few days though, everything changed. The dis-ease with the disease has become front and center. Mix that up with memories of Josh,  of holding his ashes, of remembering that last year at Christmas I felt it would be our last one together, and  of this morning reading again his post on his blog when we first found out I had leukemia and the love he expressed. Kleenex just could not handle all of that bundled up emotion. It's taking big chunks of Bounty as I reach for another. Powerful they are, these episodes of emotional floodings, with a power of their own, causing a body  to shed so much fluid and causing so much anguish that the body physically trembles. There goes some more towels.

Here's the kicker! I'm getting ready again for the transplant. Back last summer when we first found out Dirk was a match we, (all of us) spent a great deal of energy including physical, emotional, financial, and you name it we did it all that was necessary,  energy, to make this happen. It didn't. For several weeks I have known we would not have any news while an unrelated donor search began.  I also have not had appointments at MDA. It has been somewhat of a vacation from the disease. I've been able to exhale. Well, this week the results are in. We have  heard now again of donor matches . And just like that I suddenly realised that, emotionally, I'm right there back at that edge. Again. Did I say edge? Let's try ledge. It's scary, that unknown, and to have come close before and to have had an opportunity to step back and now, now, to start again towards it, well?  Well I don't relish it nor do I venture out to the precipice without  a strong dose of reality. And that raises the fear factor. Up to 4 weeks in the hospital, 3 months living in the Medical Center, frequent blood transfusions, staying free of infections, all of it to come out on the other end with a new lease on life. Sounds like a plan.  Jesus, on the cross, had to let go of control and give all of the chaos over into his Father's hands. I can do no less and and continually commend all of this chaos to my Heavenly Father's hands. In the meantime hand me the Bounty and the Brawny.                                                                                                                                                        

An Anniversary

It was Dec. 10, 2010. My brother Dirk and I were lifting a heavy steel frame for stacking fire wood. We were moving it by rolling end over end. While lifting it on about the 3rd roll I felt something give in the small of  my back. It hurt some but I kept going. We finished the move and the aching continued. Usually when I get a sore back it lasts about a week or so and it goes away. This time it didn't, in fact it became worse, a lot worse. On Jan. 3 of this year I went to see our family Dr. to have a look and to have a physical exam while I was at it which included blood work.  A week later I get the results of the labs and the Dr. says he wants to retest, that there were some scores that were off and needed to be rechecked. We did. Results were the same and I was stunned when he referred me to an oncologist. That was the rocky road that led to finding out I had cancer, leukemia to be more exact. About the back? I ended up going to an orthopedic surgeon. Three crushed vertebrae and surgery  a month later, resulted in some restorative work but chronic pain remains.

My point? A year ago today I almost broke my back, which got me to the doctor, which led to having a blood test, which revealed I had leukemia. It's been a rough road.

A year later we have news of  2 people who are matches, 10 out of 10, and a 3rd person's tests are pending. It will take another month after the selection of the donor is made before we count down to the actual Stem Cell Transplant. Here's to pain as a friend. Happy Anniversary.

Donors, The Next Step

Just a brief update. I got word from MDA that they have 2 matches that are possibilities. Both of these persons are 10 for 10 on the match scale and are willing to be donors. What happens next? I'm not sure yet. I will keep you posted. For the time being, "there is a tomorrow with someone in it who can help me", a loose quote from Fr. Henri Nouwen.

Yes, Patiently Waiting

Do you recall how in some of the earlier post we spoke of the waiting we did when we were down at MDA? Well that type of waiting often seemed to involve appointments moving slowly, Drs. being late, test results not being ready, and just about anything else you can imagine. Often I would be left feeling  frustrated, something like being ignored. I think I got to the point of rolling with that one. The clinics have struggled with that one themselves but it persists.

We are waiting again but this one is different. When my brother was here making his best effort to donate stem cells we waited. They waited. We waited. The waiting was done with the recognition he was giving a great deal of his time and energy to make this happen. There is nothing there, but reasons to be thankful. Waiting was not an issue for me because I knew I was not being ignored. Rather, Dirk and Elly made me their top priority and put everything out there for the stem cells to be donated. Unfortunately it did not happen. As a result MDA had to go to the National Registry to search for an unrelated donor. That's what we're waiting for now. That means someone out there that I do not know is willing to be a donor for me and we have never ever met and probably never will. I can wait very patiently for that and for as long as it takes  and do it thankfully. Presently from some 900 people, they have narrowed that down to 3 that have a lot of potential to be good matches and 2 of the 3 have sent samples to MDA for further lab work and the 3rd should be along shortly. The last word was that after Thanksgiving we should begin to get some results in. And so we wait excitedly, patiently and thankfully.

Birds of the Air

I had just taken a walk out to the neighbor's pasture to check on how the freshly seeded winter rye grass was growing. It looked good and had sprouted well. We have been treated to some welcome gentle showers of late. It looks like we will get some pasture for the horses for the winter and what with the price of hay in this, the year of the drought, it feels good. Those of you that are connected to the earth and the cycle of the seasons and feel in your gut, an association with plants and animals and all things Eden related, can appreciate how good it feels when things go well. It is in stark contrast to the tree killing drought we have been through. So as I'm going back to the house I'm enjoying the verdant vision. As I'm climbing over the fence I hear the chirping of a House Wren (Troglodytes aedon) in the shrubs. He's finding something to eat in there in the bushes and is joined by another wren. One of the remarkable things about the House Wren is they have a "big song" for such a tiny bird and they gave a great outdoor concert. They seemed so carefree and without a worry. They had shrubs, they had grubs, and they had a song. And I thought about what Jesus said that food and clothing should not unduly concern us. All we need to do is look to the birds of the air and the flowers of the field and there we should find  solace for our uneasiness and anxiety. The birds looked happy enough and well fed. The pasture could cause  Eeyore's mouth to water. That should lead us to believe we too are cared for as well. What I must include in this story is the fact that within a radius of 50 feet of where I sit are 4 dead pine trees. There was,  just not enough water, and they died in the last few months. Not a reassuring image about God's care taking of the trees of the field. You see, our son, Josh, died this year - 6 months ago. Lynne and I, have, and still do wrestle with that one. Not enough proverbial rain there to keep him alive. Not a reassuring image of God's care taking of his children. I know there is an answer there some where but we have yet to hear God's answer to this one. The wrens are happy. Eeyore's mouth is watering. Lynne and I, however, still carry a great deal of sadness.

The Stars Shine Bright

The other night I walked out onto the veranda. All around the stars were shinning brightly. We live far enough out so we don't get a lot of the brightness of the city lights. So moon and stars put on a pretty good show. Since it was not cold I stayed out there for awhile to take in the scene. My mind went to the story in Genesis of another time and place. That man was told to leave behind everything and everyone and follow another faith journey. Because he did so, he was assured that others would follow in his faith journey and come to believe as he did, in this same God of Abraham and of his son Isaac and later his grandson, Jacob. As Abraham looked to the skies he was told that those who came to believe as he, would be as numerous as the stars in the sky, unable to be counted. Just for the fun of it I started to count stars. You're right. I could not. The other Abraham also could not. But what struck me deeply was this and it is as bright as the stars were that night.  I am one. I am one who has  come to believe in that same God of Abraham, Isaac, and Jacob. As for which one of those lights in the sky represents me, impossible to tell.
Why do I share this? First: because it was a warm and reassuring experience, perhaps like being cradled by some very large arms, arms that also cradle the whole world all the way from Genesis and beyond to the present and to the end of time. Second: I felt like I fit, I belong,  I have a place and I am in good hands.
He took him outside and said, "Look up at the heavens and count the stars--if indeed you can count them." Then he said to him, "So shall your offspring be." (NIV)

Still Waiting

On Wed. I had an appointment with Dr. Borthakur and the word is that the Leukemia is still behaving itself. All the blood counts looked good and their was no reason to be anxious (was feeling some of that) about the waiting for the search to continue. We have no word yet on how successful they have been on locating another donor. In the mean time we wait and after yesterday's word that should become easier. I am scheduled to have blood work monthly until they say they have one. I will keep you posted.

Correction

The other morning while I was half asleep I got to thinking about a word I had used in the last couple of posts. The word I used was "integral". That was not the word I wanted to use. I had said that the pain and the disease had become "integral" parts of my life. That makes it sound like they are necessary  or essential, certainly not what I intended. Constant, yes they are. Get used to them, yes I must. The "how of that" will take time and some conscious choosing. I do not want them to discolor my life in such a way that they suck the joy or purpose out of my life and that is the part that is the choosing. There are times I have felt how easy it would be to go down that road. Don't want to go there! Grumpy old people are so much fun aren't they? Meet a few. Don't want to be one.

Learning to live beyond the pain and the disease

On one of the previous blogs I wrote about how I am having to learn to live with pain and that it is an integral part of my life now and will probably be so for the rest of my life. It has become a sobering thought. Another way I am having to come to  terms with my new life  is the leukemia. As an example the other day someone asked me "How are you?". In that millesecond I wondered, did they want the salutatory answer or did they want the real answer and had they heard about the cancer or not. What do I answer. I simply answered, "I'm hanging in there." That seemed neutral enough and if they wanted to know more I would say more. They did not ask. We went on to other matters at hand. It has, though, become common for most conversations to center on the leukemia and how the treatment is going and how I am doing. Leukemia has become an integral part of my life and will continue to be so for the rest of my life. I remember Josh saying he would wake up sometimes and for awhile he would forget he had cancer. It never lasted he said. Even when I get the Stem Cell Transplant and all moves along as it is supposed to I will still be dealing with this disease for the rest of my life, getting tested over and over and over for the rest of my life. So I am learning to live with the pain and with the leukemia.

Time Marches On

It has been awhile since I have posted and it has been awhile since Isaac has as well. As far as my treatment goes we are waiting as the process of the search for a donor continues. We have only an appointment for the 16th with the oncologist and that I suspect is to monitor my condition. I spoke with a lady at the feed store about her dad yesterday. He was having all the tests done to receive the stem cell transplant after Thanksgiving. He is also a patient of Dr. Khouri and we are discovering some other similarities as well. Another transplant patient has recently found that the transplant did not work and the cancer has returned. They will try again. I continue to feel fairly well. We went to Dallas over the weekend to see Anna and Ethan and Kate. It's still hard to feel the void Josh has left. Anna had saved some of Josh's ashes that Lynne had requested and we brought them home with us. Anna and the kids had scattered some of his ashes in Schapville Illinois a few weeks back. The next memory laden event will be Thanksgiving in Dallas. That brings us up to date for now. We are marching ahead and moving along. We did have a nice rain yesterday and that feels good.

Living With A Pain

It's been now, about 7 days since I last posted. Not one visit to MDA or any service there, nary a blood draw. We are enjoying a nice Texas Indian Summer. We had a little rain shower this week, not a drought buster but enough to water the grass. My leukemia seems to still be behaving itself. My energy level is fairly constant. I take a rest pretty much each day and sleep well at night. My back continues to hurt  requiring pain meds from time to time. So this week I have been thinking about what my life looks like or at least will look like from here on in. I have to recognize that  I have crushed vertabrae. That will not go away. There will always be pain there and fatigue in the lower back. I have a hard time accepting the fact I can no longer do for myself the physical things I used to do. Yesterday Lynne lifted the groceries into the trunk of the car while I watched.  As people walked by I wondered what they were thinking. "What a Jerk!" or "He's got her well trained." It has become important that I learn to ask for help with things that I can no longer do for myself, and to say "thanks". I know that there are many things in life that define who I am. One of those has always been the physical side of life. I like physical work. I cannot do many of those things anymore. I know. Cliches abound. Here's the thing though. There is a grain of truth in every cliche. I am not the man I used to be and never will be again. I have a hard time accepting that. That is a loss that I grieve. I know there are others ways to be. I know that rationally. It's the "catching up' of the rest of me that will take time and practise and it is frustrating. It's a waking up each morning and mentally checking the pain level and wondering what I can do today, wondering if it will be better than yesterday and can I do this, that, or the other thing. I think I can split that wood today. Really? Those around me that know me and love me do well to learn to say, "Go ahead Stupid".

update

Just a quick update. On Fri. we got  the word that there would be no more attempts to harvest stem cells from my brother Dirk. Monday morning about 9:30, I get a call from MDA letting me know they had started the search for an unrelated donor and they have about 900 names of people who have agreed to be donors who could be a possible match. They said they will narrow that down to 3 for further testing for the closest match possible. WOW. It was an emotional boost. There's the new story line and the wait for the next person to add their line as well.

This has been a different day. I have felt subdued. If you remember a few weeks ago I wrote about how our grand kids and we, would make up stories, one line at time, each adding a sentence. Well, again we have very little over which we have control and the story takes a different direction. For some unknown reason they have not been able to harvest the stem cells from Dirk. They do not know why. Dirk is fine. So is his blood. Dr. Korbling says it's rare and it does happen. What that means now is that MDA will begin to look for a donor in the National Registry. This could take a while, at least a month, most likely longer. An unrelated donor presents a whole new set of challenges for the team and for me as well. I do not feel discouraged at this point. Quiet and subdued are good words. We can still make this work and will keep moving ahead. It is not MDAnderson's first rodeo. It is, however, mine. I'm at a good place. The leukemia is behaving itself. I am enjoying some nice Texas Indian Summer. What's the next line in this story? I do not have the next line. It's someone elses turn to make the next  line, that call. You also can, perhaps for someone else by going to  "bethematch.org " and become tested to be a donor. So we will keep going and waiting. I will keep posting in the mean time.

A Valiant Effort Deserves Recognition

The harvest has failed. Though my blood has plenty of Stem Cells, the harvesting process could not get them out. The Doctor doubled the stimulant - neupogen - but still the yield much too low. Today he concluded and informed us, that no donation was possible. The harvest has failed, stopped, nothing more can be done.

This is hard, difficult news for Abe; his next move is for the hospital to find a donor from their 'bank' of possible matches. This is possible, realistic, doable .... but it involves more risk of rejection.

I feel horribly disappointed, deeply in the 'dark shadows' of failure of process, not of people, definitely not of a personal failure. But a failure of... blood, process... Actually I do not care .about the details.. the donation that held so much promise, even of life - the donation option is gone, no more hope, no try again. The hospital and doctors did all ... and all was not enough to get enuf cells. That is the way it is. Drats!

So within the good providence of God, we move on with heavy hearts, lead in my step, soon to look up again and see new options, even if only to know we did all we could, and pray of a good outcome for Abe and Lynne. So Monday we fly home, with drooping wings, seeking a better way to help.

I am overwhelmed with the huge investment Elly and I have made; two flights to Houston, nearly five weeks of time, long days of mostly waiting, tense travel in thick traffic and rain. I did get used to I-45 expressway, both ways, in the dark and light, heavy, stopped and light trafic.

And the up and down of hope for good results and numbers too low to keep hope alive. The crush came this afternoon, but the hints rang every time we got another "too-low" numbers, a small crash, leading to the big crumbling today.

I think about it and cry, and cry and cry. I had been so exited to donate. For us, in constrast of some of you, it was not hard. We had been with Abe and Lynne in Houston and Spring, don't mind flying, had the time what with being retired, no other obligations. I felt previleged to be the 'perfect match'. Now the spark of the match is extinguised! So much could have been, and now all we have is memories of a failed harvest!

Yet like every farmer does after some crop failure, we start anew, plant again and again, and pray the Lord of the Harvest to send rain and sunshine, light and dark - in the hope for new growth and refreshed treatment for a wholesome outcome.

And ultimately to believe that no matter the twists and turns, the uprooted trunks, the scorched hillsides, even if fires takes out our homes, life goes on, God is in charge and we rest, surrender and come to inner peace; momentarily, and then comes again the choking on the smoke of disappointment, only to wait the rising of a new day. Thus we proclaim, Great is our Disappointment and Great is Thy Faithfullness.... maybe, no YES!


My brother Dirk sent this out to our family and gave me permission to share it further with the folks who read this blog. It sure has been a roller coaster ride these past several weeks and it will continue for some time to come I suspect. What has struck me deeply is the lengths to which Dirk and Elly have gone to do their part to make this happen.  "Not enough stem cells" is not for lack of effort on their part. I do so cherish that and will long remember the gift they have given. In a day or so I will post again. For now their Valiant Effort Deserves Recognition. Thanks again Dirk and Elly. Love you.  Abe and Lynne

To rest, perhaps to sleep and dream

For those of you that had a blank screen on the last post, I will delete that. What happened is this. I tried to do a "copy and paste" of Dirk's that he had written on Google docs and it did not work and if you click on the gibberish on the other post it should go to Google docs and Dirk's article. He talks about how boring this process can be because of all the waiting and slow process with a lot of free time between. He also speaks of how it is so absorbing in that it is everything and takes all your thoughts and time an example of that is like yesterday someone asked me mine for my phone #. I said, "867-. No wait that's my MDA medical record #".

Today Dirk's blood counts were good enough to put him on the apheresis machine and do another harvest. They left before 6am and got home about 6pm. That was the 3rd long  day in a row. I had a dental appointment which involved some extractions and denture fitting, one last thing to do to get ready for the SCT. So tonight we are watching game 2 of the World Series. What tomorrow will bring is very much on our minds and since we cannot fast forward, we will, with some effort,  make  the move to do the human thing to not be anxious about the morrow. It will have enough to fill it by itself. And the remainder? Not ours to carry, at least for tonight.

https://docs.google.com/viewer?a=v&pid=gmail&attid=0.1&thid=1331d9f4bcf94e24&mt=application/vnd.openxmlformats-officedocument.wordprocessingml.document&url=https://mail.google.com/mail/?ui%3D2%26ik%3D3edf002713%26view%3Datt%26th%3D1331d9f4bcf94e24%26attid%3D0.1%26disp%3Dsafe%26zw&sig=AHIEtbQUvK0Z4DzVaz3sfbqRnQpP1ndvIA&pli=1

This Day is Yesterday's Tomorrow

We have heard the report and the report was: the count was low. Out of a target of 4 million, yesterday yielded 220,000 stem cells and combining that with the previous harvest of 3 weeks ago we are  at a little over 1 million.  We have been reassured that Dirk is okay and his blood is fine and there is nothing there to put him at risk by these procedures. The next step is to double the neupogen shots (growth hormone). That starts today and then tomorrow we come back in and try again for another harvest. Here we go again......... Yes, we are back where we were yesterday. Are any of you familiar with this? What happens tomorrow will need to wait until tomorrow. I have long been a strong believer in God's providential way of governing  this world and the affairs of all his creatures. I know for what I pray and for what I hope. This is not it. So I must wait for and struggle with his providential caretaking, not yet knowing any certainty in this. Tomorrow we will see more. Wisdom says wait. So wait we shall one way or tother(another).     (I'm not sure why the white screen background)

It is well

"So here we go again.........." That sounds like the beginning of the line I would use when things are going to repeat an old pattern with the same outcome and one that is less , than, that for which I had hoped. It is Monday evening. Dirk and Elly have been at MDA pretty much the whole day. Dirk's blood was good to go for the round of harvest of stem cells. Here's where I get caught. It is my inclination to fast forward and project an outcome based on previous experiences. So the direction in which I go  is to think or expect there will be a low harvest like the last time . It really is a challenge to set expectations aside and to wait for whatever the outcome. There are those who contend that one must be thinking good positive thoughts and have faith, and in the process, you will control the outcome or that you will have swayed the results in your favor. Now I wait. Dirk and Elly wait. Lynne waits. We all want to hear a good report. Yesterday I was surprised to experience, in an ever so split second sort of a way, the feeling that this was to be a good harvest. When I told Isaac he asked, "How did that feel?" I said, "It really felt good." Then it went away. I want to believe longer but it gets mixed up with my unbelief, my expectations. For today, though, I have been content to wait and wait with the security of knowing that whatever comes - it is well with my soul.  Tomorrow we will know for sure what we can not see clearly now.

Update

It is Sat. am. When Dirk last posted we were in a wait mode. In the mean time we have resolved (at least I hope we have) one last hurdle for my being ready for the transplant process. Some background here may be helpful. M D Anderson (MDA) has a philosophy that since they treat cancer they will have all the ancillary services available, in house, to acheive that goal, staffed with people trained with cancer  and its treatment in mind. So as I prepare for stem cell transplant (SCT) I will have a period of 3 to 4 weeks in the hospital with basically an extremely low or non existent immune system, having frequent blood transfusions and all the protected environment I need to give my body a chance to let the new stem cells take hold and grow. Then for a period following that, of perhaps 100 days, Lynne and I will need to live within 15 to 20 minutes of the hospital in case of emergency, especially infections. My system will be compromised for long time to come. To mitagate against infections and all possible scenarios, they want to minimize all risks and possible problems as far ahead as possible.  To this end they have their own cardiolgy, ophthamology, radiology,  you name the "ology" they have it. Both Dirk and I have had to be cleared by various services, first, for Dirk to donate and, then, for me to receive the SCT. It is really something to see this "behometh institution" function this way and, for the most part, so smoothly. There have been a couple of times I have had to go outside those "holy walls" to get the service I needed. For example I developed an ingrown toe nail and they suggested I go to my family doc. That went smoothly. On the other hand one of the services that needed to clear me was the dental and I started that in July. Since then, for various reasons, all of my appointments were canceled. We had worked hard at making appointments to coincide with good blood counts. Over all, 6 cancelations. They recommended I go to an outside dentist. I did. I put her in touch with my SCT doc and they have consulted with one another. The dentist from MDA is officially the one to sign off on this. He has apparently disagreed with my dentist's suggested course of action. I think we have that one worked out now, as of 5:00 on Friday. It felt a little like being the tail trying to wag the dog. The Behometh works well and smoothly but does not flex or change easily. So we are moving ahead again. Dirk has stayed healthy over the last few weeks. He had to be rechecked in  a couple of cardio tests and those and his blood work were all "geen lights". He received his neupogen shots on Fri. and will continue those on Sat., Sun. and Mon. and blood work on Mon. am and then we will get the word on harvesting stem cells either on Mon. or Tue. Dirk does not want to be thanked again so I won't do that again. While all this is going on, Fri.,  Elly woke up with a numbness on the left side of her face and it has really been doing a number on her left eye because the lid does not close. Thankfully our  family Dr. made time to see her and confirmed that it was Bells Palsy and was able to perscribe medications for her. She's hanging in there. Thank you Elly for being here. On another note Lynne has taken this window, of my relatively good health, and with Dirk and Elly being here so I am not alone, as an opportunity to see her family in Michigan. After the SCT starts she is my caretaker and it will be long commitment. I will be relying heavily on her. She's my main "go to". I love you hon! Well, that was our week and to top it off, Isaac had exams all week and now its Saturday and a Texas Indian Summer Day. There's enough grist for God's mill in all of this. I wait to see how it goes

Waiting (reflections by Dirk, Abe's brother)

11-10-11 Journal Notes at 6:26 a.m.

Today nothing is scheduled; maybe read, chat, sit around, be at ease and  ... wait. Wait for Friday, when we will learn that my blood is ready to go or no? Actually the big news we await is the number of stem cells collected on the first day of harvesting, which will be Tuesday next. Enough stem cells? That is the question. YES is the answer we await.

I think and know, we cannot know till Tuesday. I calmly await the information; as we get closer, I will become eager to hear; after we hear I may look back and realize how anxious/eager I was, and now how relieved, happy! (or disappointed) I am. That is how it sits with me.

I have prayed for good results, for Abe's well being (being well) and healing; and I cannot do other or more. I have laid out my praise, my sense of previlege to donate; nir else to do but wait, wait upon the Lord. These words come from memory:

     They who wait upon the Lord shall renew their strength.
     They shall rise up on eagle's wings.

Isaiah 40:25-31

To whom shall you compare me?
     Or who is my equal? says the Holy One
Lift your eyes and look to the heavens:
     Who created all these?
He who brings out the starry hosts one by one,
      and calls them all by name.
Because of his great power and mighty strenght,
     not one of them is missing.

Why do you say, O Jacob,
     and complain, I Israel,
"My way is hidden from the Lord,
     and my cause is disregarded by my God?"
Do you not know?
     Have you not heard?
The Lord is the everlasting God,
     the Creator of the ends of the earth.
He will not grow tired or weary,
     and his understanding no one can fathom.
He gives strength to the weary
     and increases the power of the weak.
Even youths grow tired and weary,
     yes, the young stumble and fall;
but those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
     they will run and not grow weary,
     they will walk and not be faint.

Once upon and real time

It was just for fun, that last post- just something to break up the other stuff. I agree. It was  really good wasn't it? Life gets serious and a little levity feels good.
 Dirk had blood work on Monday and he is set to meet with Dr. Khouri on Wednesday, then Friday a meeting with Dr. Korbling and if all goes as planned he will get the neupogen shots and Monday start harvesting the stem cells.
I, on the other hand have nothing going this week but rest.

The Almador inside of me

Once upon a time there was a handsome prince that lived in a gigantic castle in the prosperous kingdom of his father and mother, the benevolent king and queen of the land........There I go again making up stories of fairy tales and princes . Back to the real world. NO WAIT. I want to go back. What's wrong with living there? And every day Almador, [ that's the prince's name] arose at sunrise to greet the day with a hearty and vigorous salutation that could be heard throughout the land...... STOP Earth to Abe- Earth to Abe. No one lives there. That's make believe. WAIT, Almador lives there. So do his mother and father and all of the servants and what about the country folk? Today was the day that Almador was anticipating with great excitment. Today was his birthday. Of all the days this was the most magical of them all. I really do want to live there. It's a funny thing though, even as I remember the tales of youth and imagination, they were usually created in the fertile imaginations of adults. What Almador wanted for his birthday, more than anything else in the world was a secret and kept from the king and queen. He dared not tell his parents for fear his wish would not come true. Hey! Stories work. You're reading it and I'm writing it. And I'm doing this while I'm watching the Detroit Tigers and the  Texas Rangers with my brother and sister-in-law, who are from Detroit, and it's the bottom of the 11th, tied at 3, Cruz is at bat, bases are loaded. He knocks one out of the park but it was a foul ball. Next pitch he does it again and this one is good. Game over!!! Almador is estatic. His team has won. Happy Birthday.

Hi Sisters and Brothers,

 

On Sunday Oct 9, while you are preparing for Thanksgiving, Elly and I will be flyiing to Houston again for another round of cell harvesting. The time 'at home' well fast, the trees have announced Autumn, and the sun has been warm and gentle. Now back to Houston and the business at hand.

 

Abe has said this, but with Cancer, it not only may spread througout one's body, it spreads all thru on's life. The big "C" becomes 'control' over all on ones life, even the donor! and spouse. For the simple procedure - sure 4 hours - maybe done 2-4 times, that takes two weeks, on sight. It is not like donating a pint of blood, and going home within an hour. Two more weeks.

 

But there is no room to complain, for sure if it all works out, and we pray it does, and when Abe is well again (we live with that hope!); by then the two weeks, even four, will seem like distant, long forgotten labour (donation) pains!

 

Our son Brad helped us get tickets, which regularly would cost about $1,000 for the tow of us, and we are thankful to him for his support.

 

I plan to keep you posted, and remind you that to respond you need only hit on "reply"; yes, we would like to hear from you.

 

Love

 

Dirk and Elly

 

The above is an excerpt from an email, my brother Dirk, sent to family and extended family, mostly in Canada about their coming back to Houston to continue the endeavor of harvesting stem cells. Here's to a great and an abundant harvest and a fantastic Thanksgiving. May God bless the harvest. Abe

It sneaks up

On Sat. morning Lynne and I were having coffee together. The sun was warm already and the air was sticky, feeling like it might rain. Just a tease of rain like usual. The conversation? Lynne has requested that for morning conversations, we stay away from heavy topics until at least the first cup of coffee is consumed. I tend to be up earlier and so have already  finished one cup. Caffeine's working and it's hard for me to  stay with the "I just got up" guidelines. So I work at it. Well yesterday, for some reason or another we started talking about Josh. And the conversation went to rereading his blogs and the time he talked about, not only his cancer, but also the discovery of mine. I suddenly realized how much I missed him, of not having him here while we go through this. For years he and I have worked on projects together especially on the building of our house. I tried to imagine what it would have been like to have him along, along with the rest of my family, going through this together. He would have been there every step of the way like he always was. And before you know both Lynne and I are going through another box of Kleenex. O GOD, WE DO SOOO MISS HIM IN SO MANY WAYS. And again the grief. It sneaks up on us.

Looking Up

We've been on hold, in a pattern, not much going on, in the doldrums, at least as far as events go, as it pertains to my illness. They will try to harvest stem cells again from my brother, either towards the end of next week or the beginning of the following week. I have only one visit this week on the schedule and non that following week. Dirk is staying healthy as am I. So we wait.
I have, although, been busy on the inside. I have been thinking a lot about how much effort goes into this process. We are now into the 9th month of poking, prodding, testing, and zapping this disease. That's a long, long, long time. Guess what! We are not even half way through yet. I had, at the very beginning of the chemo process in Mar., decided I would make this work. The effort will be worth it. That was my resolve. It has not always been easy to hold to that resolution. Over the months the disease attacks not only the body , but also the soul. Is it really worth all the effort? I mean, "Is it really worth it?" There are some days I have wondered. That is the powerful grip this disease can have. It has to do with the length of time it takes, the amount of time spent at the hospital, the gnawing wear and tear it takes on my family and myself. No one in the family is immune to the icy cooold tentacles of the dreaded "C". Our whole life has been disrupted, routines, conversations, meals, activities --- YOU NAME IT. CANCER CHANGES EVERYTHING!!!!! It is exhausting for all of us! And then to top it off - it may not work and if the treatment does work we will not know for how long. Scenarios? Best case? Worst Case? Nobody Knows.
I'm walking down the driveway and I'm looking down. That's the way I tend to walk these days. It seems to be easier with my bad back. So as I walk I see the yellow florets of the rain tree on the ground. So I stop a minute and look up to behold the beauty of the tree in bloom. In those few moments I was reminded again "to be thankful in all things". Or while in the midst of the mire there is good to behold and for which to give thanks.

Dirk's perspective as donor

Drats! Shucks! a three week lull, hiatus, delay. That is the conclusion for this segment. Elly and I will fly home on Wed - that is the bad news; and we shall return on Oct 13 to finish what we started, that is the good news.

Details. My platelets are still too low, how come? I had a cold three weeks ago (one week before starting the steps in the process of stem cell transplantation). I need a three week spell, rest, normal life for my blood to build itself up. Then we will repeat the process, we'll take up where we left off.

I feel numb and relieved. To think we have to stop, hit like a thud, wham in the pit of the stomach. It made me feel weak, lethargic, silent and solemn. So sad that I have gone into silence, my recourse when overwhelmed.

I am also relieved of being puzzled, past wondering what is wrong. Past questions included 'will the whole process' be in jeopardy? Will Abe not get the gift of life? To have wondered chokes me with unspent tears. Now that is all behind us. Problem diagnosed. A COLD! actually the aftermath of the cold on my blood system. Like a wind storm, a lot of debris apparently has a strong limiting impact. Three weeks and I should be back to normal

I expect that the next three weeks will have relief from travelling the hour drive, thick traffic, stop and go... and spending most of each day in a large, neat, clean hospital; seeing hundreds of people in numerous waiting rooms, many silently holding hands, waiting to be called in for another round of blood drawing, awaiting results and eager to hear good news... and often being disappointed.

No one knows the silent sobs, the  deep anguish behind the stoical, sad, drawn faces - collected in the waiting rooms.

This will go on for the three weeks we are away. Cancer is cantankerous.

So One Day-----

"So one day-----the very rainy day----- a cat -----named Cat-----" the kids would say. Dr. Korbling says "We postpone.". Dr. Khouri says, "We would like to try to continue to harvest stem cells after Dirk has  had chance to recuperate for a couple of weeks". Dirk and Elly say "We will come back and try again". So say we all, as we all agree to a new chapter in an old saga. We reconvene in 2 to 2 1/2 weeks and find out what Dirk's story line will add and what things will look like then. It is my nature to ask the 'what ifs'. What if we end up with less than the 4 mil cells. We do not want to put Dirk at risk. Dr. Khouri says "we go to the national registry and we get stem cells from another donor. It takes about a month". So for now we wait and continue to pray for a great outcome for Dirk and Elly and for Lynne and myself.  ---- the story is not over by a long shot. It was an unexpected twist. In novels and fiction it makes for good copy - real life?- not so much. If I was the author and finisher of this saga I could tell you how it ends. I'm not though. I do, however, repeatedly and consciously, leave the story line at the feet of the author and finisher of my life. Let all of God's people give a hearty AMEN

A New Twist

      We just spoke with Dr. Korbling, the apheresis doc. He has decided that the platelet count could be higher and are not where he wants them. His conclusion is that since Dirk had a cold a few weeks ago this could still be having an impact on his ability to bounce back on the production of his platelets. So a consult with Dr. Khouri results in the decision to postpone the stem cell harvest for 2 weeks to give Dirk more time to recuperate. That is the next line in this story. At 1:00 I meet with Dr. Khouri and get a perspective from him and the results of all my tests last week.

Once Upon A Time .....

 "Once upon a time----there was  a dog----- whose name was -----Dog." That's what we did on some trips with the grand kids. One person would start a story and then in turn we each would add a phrase and around and around we'd go. It seemed that at a certain age the children were fascinated with bodily functions and inevitably the story would include the animal relieving themselves. It came to be a joke that everything would go to "poop".
  There are times I am reminded of that  in life. As we go along there are parts of the story of my life over which I have no control. I add my line. Dirk adds his. The Drs. add theirs. And the disease adds its own story lines as well. Sometimes it feels like it is going to poop. Today Dirk adds another phrase by being tested again and getting ready to donate stem cells. I'm here to get blood tests as well and have the catheter installed. That's my line. We meet with Dr. Khouri to hear his report at 1:00 based on all my tests last week. What will the disease add to the story line? I always tried to get my kids to change the story. Overly optimistic? With my grand kids I go along with their humor. With cancer I want to yell, "Stop!!! You don't get to tell my story!!!". It doesn't work. It's hard to recognize we have so little control. We just came back from apheresis and Dirk's platelets were good so he adds this to his line in the story. He now waits for the count on his stem cells,  sometime around 12:00. I leave the story open here and wait for the next line.

A Second Post by My Brother Dirk

And I hope there will be no Report # 3.

So here is the scene. My brother Abe has leukemia, been thru 5 chemo doses, no more to be had.  Now Stem Cell transplant is the next treatment. I am the donor of my stem cells. I am in Houston Tx, where my brother lives, to have them harvested and passed on to him. A simple concept, a very involved, complicated procedure, hopefully and realistically life giving (and some risk of life .... ).

My brother is in M D Anderson Hospital most every day, for some procedure as innocuos as a video how a subclavean catheter; or as heavy duty as more tests looking for any other troubles (heaven forbid). He has a full schedule for the coming week.

To harvest my stem cells, I am injected with neupogen, to stimulate multiplication of cells; first time round got only .37, two days later got .48. They need 4mil and I am not even at 1 mil. so far.

Oops - my platelet count is low, very low, like half of normal. Stop all harvesting for 4 days, more neupogen on Sunday morning, blood test on Monday morning at 7:15 a.m. (They start early, work on weekends). Hopefully my platelets are up; if so an other shot of neupogen and later in day, on the machine to harvest more cells, DV.

DV is latin Deo Volente meaning the Lord Willing. I am confident that the Lord will's our goodness, yet the details may vary greatly. So  with each step we hope and pray for a good outcome. If  it is other wise, we work with that. This is the roller coaster of cancer in mini series. Abe and Lynne and family (esp Isaac), have been on that roller coaster for a full season, ending on May 22 when Joshua died of his cancer disease. And the aftermath of that coaster is just as devastating as the disease itself.

So what Elly and I are enduring is definitely miserable, loaded with uncertainties of when we will finish, will they get enuf cells. The answer is the same "We do not know, we'll after the blood test etc. So tomorrow I go for that early (7:15 a.m) bood test and wait for the results ... and then decisions for what is next. So we await a good outcome.

So this is report # 2; no one knows what report # 3 will bring. Till then thanks for your support, interest and yes continue to pray for my brother Abe and his wife Lynne, they are front and center in the roler coaster of cancer.

Love

Dirk

Posted by my brother Dirk

Sent: Wednesday, September 21, 2011 9:32:27 PM
Subject: Donation - a donors experience Dirk Evans
Greetings to all of you,
When I learned that I was a perfect match to donate Stem Cells to my brother Abraham, I was elated! What a humble previlege to be choosen - certainly I had nothing to do with it - to donate!

Elly and I have now been in Houston, with Abe and Lynne, for 12 days, and have perhaps a week to go. Starting with Monday the 12th I have been at M D Anderson Cancer Center every single day. I have had more tests that I realized existed... well a lot of tests; I have lost track of the number of times they drew my blood - one time they took 12 viles! (I did agree to participate in 'research' two viles for that). I had a 'stress echo' (measures heart beat and strength) which got my heart beat up to 127 per minute, then all the way to 150. I was pumping without the huffing. But the rate made me nervous; I talked that over with the MD the next day, that settled me down.

The thing is they need to check all my systems that could be involved in donating.

All that being in order - with one slight scare - my billiruben seemed high, corrected itself by the next day-  then came getting ready to donate. Friday, the 16 I got the first injection of nuepegen - a growth hormone that Lance Armstrong should not have taken! The hormone is given to stimulat growth of the number of Stem Cells. Four days of those in my belly, all done at the hospital. So every day of the 12 so far, I have been at the hospital.

Monday the 19th I finally got attached to the machine which separates the Stem Cell by centrifucal force, like a cream separator of olden days. Only what blood came out the right arm, went rigth back in the left arm (after skimming off the Stem Cells), for three full rounds; take up to four hours.

But  that first harvest yielded only .7 units, instead of the 4 needed. So today I had another hook up and filtering done. Tomorrow I learn the outcome; but I am already scheduled to do another trip on the machine. Oh yes, after each event, more blood work!

With that low yield the first day, I felt very disappointed, but today we did more; and no matter what it takes I will see this thing through.

After all, we are talking about my cell, stem cells as a means of preserving Abram's life!

Tomorrow another day in the process as a little bit of my blood cells for his entire life!

Elly is a great help in standing by, explaining what she knows, learning new things and holding my hand  - especially when I was overcome with tearful joy in giving life.

Peace

Dirk

A Late Date Update

It is Sat. The last post left us with .7 million stem cells from Dirk's blood . After a recalculation it was around 1 M. after Wednesday's harvest. On Thur. Dirk's platelets were on the low side so the decision was made to postpone another attempt until Mon. On Sun. he goes back in for another neupogen shot and on Mon. some more blood work and depending on the counts he will have the next harvest if all is looking good. In the mean time Elly and he continue to help with projects  (in the heat as well ).
 My schedule for Thur. was a very minor tutorial video  and both Dirk and I had nothing on the list for Fri. and Sat. On Mon. we have a meeting with Dr. Khouri(stem cell doc) and get feedback on all my tests from last week. It will also give us an idea of how we go ahead  from here. Questions do abound as to how we will proceed. This disease takes over the blood and crowds out the life sustaining cells. It feels like it does the same to our lives replacing the familiar, crowding out the life sustaining things. I said a long time ago, at least it seemed like eons ago, to not let this disease destroy who I am and who we are. That is still my resolve. There are days it is easier than others. I suspect the next 4 months will stretch that even more for myself and my family. May the Lord walk and talk with us as we press on. Amen

Wednesday written on Thursday

Yesterday was busy. Dirk was able to donate a second round of stem cells and we will get a count of that this morning after his blood draw. If his counts are good and they need more he will donate again this afternoon. It gets to be a full day. I had a bone marrow biopsy and aspiration, a big needle in the pelvic bone and lots of pressure. After that they tested my lung capacity and function. and finally a CT scan with the barium and iodine contrast checking to see if there is any evidence of lymphoma. We had a full day(there's a theme there). We also managed to list our house for lease with an agent finally. A few more things to do there but on the road. I have only one appointment today and one tomorrow. Monday we get the results of all of this and Dr Khouri will decide whether or not we are ready. If it is yes I start chemo again on Tuesday. Will keep you posted.

That evening

We stopped by the other house to get couple of more things done to get ready for renting. Dirk and Elly have a lot of experience at that and have been helping there as well.  We have just finished dinner and we are watching "Dancing with the Stars". Everyone is tired and ready for some "kick back time". Tomorrow is another day and it too will be full. So for tonight it is enough. Good enough for lilies of the field and birds of the air so it will suffice for us. Good night and "wel te rusten".

cont'd

It is now about 2p. When Dirk came for his blood work this morning some of the counts were off a little. So they decided to give him another shot of neupogen today and Elly will give him another round tomorrow a.m. and they will check his counts again tomorrow. If they are satisfied they will harvest more of the stem cells tomorrow. The target count of the total collection is 4 million stem cells. At present they have 0.7 M.  They can do the transplant with less if needed. So we keep going. It's another twist in the erratic course of the treatment of CLL.  Again, cancer sucks.

As We Go Continued

It's Tuesday about 10am. I have completed a PET CT scan(Positron emission tomography/computerized tomography scan). I wait now for my 11am with the social worker for an evaluation of my ability to go through this process of transplant and the risks inherent in the process. In the mean time Dirk is on his way down to the hospital to do a second donation of stem cells to supplement yesterday's harvest. That will fill the rest of his day and and take  his energy as well. He has amazing stamina. He is doing well. Elly has been by his side the whole time as well. Partnerships are wonderful. I know I cherish all that Lynne brings to our relationship. They have just arrived and Lynne is sitting beside me  and patting my hand asking, "How ya' doing hon?" after she offered to get me some coffee.

as we go cont'd

EKG showed that the heart's working. Went by to see Dirk and Elly and Lynne. The harvest is going as planned. The nurse showed us how the centrifuge separates the components of the blood and then they draw off the stem cells and collect them and  the other components are recombined and returned back into Dirk's other arm. It should take about 4 hrs. or less. I am in the Stem Cell Transplant Clinic for 2 appointments here. Over all the waits have not been long in fact I am ahead of schedule. Tomorrow will be a long day starting at 6:30 with a PET scan. I just finished meeting with the Research Nurse about a protocol for trying some investigative treatments that have shown to help reduce the chances of the cancer to return.  I have also an admission date (for now) of Oct. 3 with the 10th as the target for the infusion of the stem cells. The ball is still rolling.

As We Go

This is Mon. We left home at 6 am in the rain (yes, it rained). Both Dirk and I had blood work drawn. Dirk had his neupogen shot . Then a breakfast break. Dirk went to apheresis for the harvesting of the stem cells at 9:30 and I have had chest x-rays and am waiting for an EKG. I have 2 more appointments after this. The lady next to me is jokingly  remarking that her hair is coming back but not the color she wanted and hoped it would not be gray again. Humor helps. It really really does. The other night the 4 of us were playing cards and for awhile we laughed and forgot about the gravity of it all. A phone rings and another person says it makes you want to dance. We in the room are in this together. The lady next to me just showed us what looked like an ultra sound picture or pet scan of her lung cancer tumor before and after radiation. She just went to go visit with someone else who is also getting radiation. The common bond of illness and suffering and hope and healing. It's all stirred together into one when we come to MD Anderson from all over the  country and the world. Cancer knows no boundaries.

Cue Ball Hazards

Well, things have changed. The cue ball took a different turn. I apparently misunderstood on the admission schedule. All next week is devoted to running tests as an outpatient and that will go into the week of the 26th as well. In that time it looks like there is two dates with chemo on them and nothing yet said about being admitted and receiving the stem cells. Dirk is getting the neupogen shots Fri., Sat., Sun., and Mon. to stimulate the growth of the stem cells. Mon. they will harvest them and if they need more they will do so again on Tue. When they transplant them into my system is not on the calender yet. The ball is, however, still rolling.

schedule

I looked at my appointments for next week and they start on Monday going thru Friday pretty much all day long and they include heart, xray, pet scan, ct scan. and blood work and other little things like that. Then on Monday, the 26th, if all goes as planned I will probably be admitted. Then on Tue., the  27th, I will get the chemo treatment that is to do the final number on my leukemia obliterating my immune system as well. Then at a date to be determined yet they will implant Dirk's stem cells and we pray they will be fruitful and multiply giving me a new chance at health. There's quite a metaphor there about my brother's blood literally saving me. It brings tears again. Thanks again Dirk and Elly

Very much awake

I am very much awake now. Yesterday was a good day - a lot to celebrate - a lot to digest. One of the other things I felt was - there's so much to do. I will be gone for approximately 4 months. 1 month in the hospital and 100 days down town by the hospital to be close in case of complications and Lynne will be there for that as well. Every now and then I feel a wave of panic come over me. How are we going to do this? What about this? And what about that?  There are a lot of things that are out of our control. We've talked about that, about not worrying about the morrow because it's got enough for itself. I do well with lists and checking them off. Who's doing this, who's doing that? What's important, what's not, who can help with this and who can help with that? We have about 9 days left to do that. I am very much awake now, ready to go. Wait, it's the wee hours of the morning. I should be sleeping. Very, very much awake.

8 ball - right side pocket

I never have been very good at playing pool. I understand all about the angles and cushion and bank shots and all of that. It was always the scatteredness of the game that left me unsatisfied. You take one shot and balls go all over in patterns that mathematically, I'm sure make sense, but leave everthing scrambled. What I did like was that the on the first round almost any thing can happen. Give it your best shot. After that you had to be particular and there were always unintended consequences to a play. Then you try a different shot. Finally you're left with the 8 ball. This one really counts.
Well today felt a little like that. Dirk was medically cleared to begin the stem cell donation. I was given an admission date to the hospital to begin chemo following his successful donation. The call was made by Dr. Khouri to go ahead. 8 ball - right side pocket.  The stakes are higher, the cushions and  the banks still count and other balls can still get in the way. All too  familiar am I with skill and science coming together,
taking their best shot and waiting to see how it works. It has inherent risks and I am not naieve about that so Drs. and staff and hospital take the shot and I, along a host of others, will pray for God's
hand upon this endeavor. 8 ball- right side pocket. Take the shot.

A Little of This -- A Little of That

I 'm writing this while we're in the proverbial waiting room at MDA. My brother, Dirk is sitting waiting for some X-rays. His eyes are closed catching some snooze time. We just finished lunch after an extended echo/stress test. It went for about 2 hrs. We have one more meeting scheduled after this and that will wrap up the first day. Tues. and Wed. and Thur. will have their own waits. Dirk just jumped so I guess he's in a pretty good snooze. We have been joking, after reading Isaac's blog [they just called Dirk's name and he jumped up to go back] about how I will take on Dirk's blood and immune system and we stretched that into all other kinds of things. I am finishing this up much later. Suffice it to say we're glad they are here and that all of this is possible. Do I hear an Amen? And all God's people said AMEN

Story tellers and hearers of the word

On Thursday when I was in to see my orthopedic surgeon he told me about his cousin who had the stem cell transplant  about 5 years ago. The word  was music, sheer poetry, like a bone for a dog. This is  the sort of thing I can gnaw on for a long time while I'm going through this.  5 YEARS!! Did you hear it? FIVE YEARS AGO!!!!  He also brought us up to date on his mother who had this treatment and she's doing well. I know, 2 in one family. I thought the same thing. But get this, she's 77. SEVENTY- SEVEN.  And then again on Friday, Bob,  at the bank brought  me up to date about  a friend of his at his church who is going through stem cell transplant(SCT} now and had gotten to go home early because she was doing so well. These are good stories. Tell me the stories of healing. Write on my heart every word. I am, after all, going into this  with the hope I will do well and go how early,  envisioning  life 5 years from now and I really do dream of 77 or something in that range.

Dirk, my brother, the one who is a match, the only one out of 7 tested, the proverbial "One and only" is here along with his wife Elly. He has an appointment Monday morning at MD Anderson. He will have a battery of tests in preparation for the harvesting of the stem cells. They will be here for 2 1/2 weeks and we will meet with Dr.Khouri on the 26th and go from there. T minus 20....19.....18......
         

"This path is not familiar"

When I was a younger lad I would take walks around the farm and the neighborhood and Aaran Lake. Our dog, Tippy, would go with me. My favorite times were spring and fall. And even though I knew the area very well I occaisonally would come across an unfamiliar path. And away we would go down this new path.
Yesterday we met with Dr. Borthakur, my oncologist, again. "Your blood counts look good." When I asked what happened he said I don't know. It could be.... or ....it could be.......or maybe....... what it is not, is the bad things it could have been like the return of the CLL. The conclusion: we do not do round 6 of the chemo and go to stem cell transplant. So Dr. Borthakur handed me over to Dr. Khouri, the stem cell transplant doctor.
What happened there was a pivotal shift for me. In Jan. when my family doctor told me that my blood counts were off and wanted to retest, I thought it must be a glitch and when he referred me to an oncologist after that I thought this isn't really happening and when Isaac said we needed to get to MD Anderson I argued with him and when Dr. Borthakur said it was leukemia I thought, well people can live with that and then when he said this had some chromosone mutations and would come back soon after treatment, he also said lets wait and see and now this final HAND OFF. It's the end of a spring walk. This path is not familiar. There is no happy dog running along side of me as we take a new path .
Last night when I went to bed I began to realize how unfamiliar this path is. Every step has proved to be a step down. It's not a glitch. It is going to stem cell transplant. I also thought of the risks that face me now. There is a risk of dying from the complications of this "path". How great? It varies depending on the study you lok at, yet there, none the less. What I felt was like a scene from a bleak cold dark winter night when the tempurature is below zero., like a scene from Dr. Zhivago.  Even though I am surrounded by a loving and devoted wife and family and an abundance of loving and caring extended family and a host of friends, I feel very much alone as I think of my own mortality. The words of the old spiritual went through my mind.
          You've got to walk that lonesome valley.
           Well you gotta walk it by yourself.
             Well there ain't nobody else gonna go there for you.
               You gotta go there by yourself.

I've lost my rhythm.

Since my back injury and subsequent surgery in Feb. and the fatigue that goes along with leukemia, I  have not been able to work at my business of landscaping. Along with the treatments and clinic visits my whole routine  has been thrown to the wind. What I mean by that is - the structuring of time like days, weeks, and months  has changed dramatically. For example, this  is Sept. From early on that was the start of the school year. When I was in school, classes went from morning 'til afternoon, Monday thru Friday, then the break of Saturday and Sunday, then back to school. Then come May - summer break. So went college.  And then in the work world there was a pattern as well - 8 to 5, Monday through Friday and weekends. There is a pattern to all of this that is very familiar. It is as familiar as day goes into night, so goes the rhythm of work into rest. The one follows the other. I miss that familiar rhythm. I miss the rest that comes from that familiar rhythm. I've lost my rhythm. I miss work. The other part of that equation has to do with the fact that I have always enjoyed the physical part of my work. To have put in a day of physical labor heightened the release that led to rest. I miss that familiar expendure of energy. As a result I miss my rest. I've lost my rhythm. There is coffee to drink in the morning. Then what? There is a whole day to fill. I cannot physically work with the crew anymore. I am to stay away from the dust and dirt of the very earth I have felt a close kinship with since I can remember. The other day I was testing a lawn mower and so I decided to mow a part of the roadside. That is forbooden. Isaac told me so in no uncertain terms. The dust and spores could take me down, an image I'm still not familiar nor comfortable with, but must get used to and that right quickly. Last week I resolved to open my mind to finding new ways of being. Some of this came up in a session with the therapist and she asked if I liked to read to which I said no and I told her the story of Kate, our  grandaughter. Kate, 10 at the time, found out I didn't read to which she responded, "And you're still alive?". There may be  a good hint there about how to stay alive. I'm sure there are plenty of other good suggestions as well. Oh, and
I forgot. I'm also to avoid contact with other people especially as flu season comes down the tube. I miss my work, my hobby, and I sure miss my rhythm.      Abe

Where Else Would I Be?

Her answer was, "It's worth it". The discussion had to do with the hasseles of waiting and going through all the tests and the effort it takes to get the results. "Where else would I be?"
I must admit that sometimes, the length of the illness,the lack of certainty of a cure, the side effects of  the chemo, the hospitalizations, the trips up and down I-45, the 15 or so clinic visits a month and whatever else may come up - slowly but surely these leave tread marks on body and soul. Josh knew something of that. When talking about his treatments, the endless treatments, and the side effects and his ability to stay with it, his mother told him how brave she thought he was. His response was remarkable. "Brave? What do you mean brave? What else am I going to do? Just die? He never never gave up.
Some do. I was visiting with someone the other day. His brother had been misdiagnosed for 2 years. Finally when they determined it was cancer and they were able to get ahead of it he was on track for a stem  cell transplant and had a sister who was a match - he said  no he did not want to. 4 months later he died. It is another aspect of this  disease,  how it can take the will to live before it physically takes life. Wear and tear can do that. As the Country and Western song goes, the "give a damn is busted".
Last weekend  I spent 4 days getting infusions at MD Anderson. From the time I would leave, get my treatments and get back home it would be 8 to 10 hours. Lots of time to think and process. On the surface that shouldn't seem so bad. Cumulatively though it extracts a toll, something I'm paying for taking this journey. So far I'm doing alright I think. " My give a damn's not busted." To quote the lady in the waiting room, "Where else would I be?" or Josh, "What else am I going to do ? Just die?"  When I grow up I want to be like that.      

Now I Lay Me down to Sleep

Now I lay me down to sleep,
Closing my eyes as rest I seek.
As I go through the events of the day,
I savor and and taste the things they convey.
Faces and people and memories steal back,
Sleep now is gone and I'm right on track,
To shift through it all with sleepy eyes
Saying "hello" after distant goodbyes.

Now I lay me down to sleep,
I'm wide awake now counting small sheep.
It's only a second, a minute or two,
And there in my mind are images of you.
It's healing and soothing to see all the faces
Of family and friends from so many places.
They say it's important I need to get rest.
Yet alone in the dark fond vigil is best.

Now I lay me down to sleep.
The next thing I hear is the alarm going beep.

Is it on? Testing, 1,2,3,4. All cows report for milking. Can you hear me? I guess it's on. Let me introduce myself. I'm Abe and better with the audio side of composition than I am the writig side of it. I mak typos a lot. I'm so also slo. I also can stay with long term projects longer than sometimes I should. So here goes a Blog that I'm starting after watching , Joshua, our son endure the ravaging pain and life-sucking turmoil of cancer.
He died on May 22nd. We miss him and it leaves a big hole in our lives. 5 months before he died I was diagnosed with leukemia [CLL]. Many have asked us about how we are doing. Well in the venacular, CANCER SUCKS. This blog will give me and my family some opportunity to share that journey if you wish to follow or walk with us Our youngest son, Isaac, is most assuredly better at the medical lingo and has a blog you might wish to check in on for that. You can find it at,
http://heartofalonelyhunter.blogspot.com/. Along with his medical savy he's very articulate and a very beloved son and devoted brother.
The title I've chosen? Well I've always chuckled at the story of Moses and his calling. Robert Wise said Moses' reply was more like, "Here I am Lord. Send Aaron." Well not pretending to be Moses, I do venture into this realm with some apprehension and there are Aarons out there who are better equipped to navigate and unravel this Journey. I have also become very sensitive to the fact there are many of you who have journeyed long with pain and grief. I figured ya'll for people who would walk with us. There is one more important reason for doing this and that is this, it will be therapeutic. So many times I will just be having conversations with myself. Listen in if you like. Abe