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.