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.