The Slippery Slope

My health is good. There is nothing that is creeping in except........ and that is always the clincher. It seems like every ache and pain is the next catastrophic threat, in my mind, coming down the tube at  me. It's official now. I'm paranoid and a hypochondriac with tendencies to illusions and vivid imaginings. A twitch in the eye, an ache in the thumb, a chill in a toe, a sneeze. Why any one of these could be my impending doom. Slowly I talk myself off that slope. I shrug my shoulders and say to myself, "silly me".

Sometimes there are too many stories out there of folks having bad outcomes. Isaac said, "You and Google. A dangerous pair." I was told early on, to stay off Google and then also told, an informed patient is a better.....Wait, back up. That's it. That word patient. It speaks volumes. Every day, all day, I am a patient. When I get up in the morning I move my hands, then my fingers, especially my thumbs. Has the neuropathy moved further? I do the same with my feet. I check my throat. Is there any soreness? Mucous? Any fever? That itch? GVHD? Even as I write this, my right eye is watering and the vision is a little blurry. I did have indications of cataracts beginning, according to the ophthalmologist. Maybe it is changing. I stopped just now to massage my right thumb to relieve the numbness of the neuropathy. I had 13 appointments for Oct. and Nov. They are still poking and prodding and medicating and testing and boring into bones and spinning the CTs and MRIs peering inward where eyes have never gone before, to get a better look. These are sharp things, loud things, distasteful things, embarrassing things. For almost every appointment, they ask me to remove my clothing. Really? I have a theory about that. It is so you won't run away when they come at you with their poking and prodding and boring and spinning and such. I'm not a normal person anymore. Lynne says I never was.

 They are watching and looking for anomalies, bad things, dangerous things in order to intercept and remedy. Seriously though, they really are good and well intended people and I mean them no disrespect. They are my friends. The truth be known? I tire of being a patient and walking slippery slopes and losing my balance and afraid of sliding aaaalllllll the way down. After awhile I get to, "Silly me".

Christmas 2013

Christmas Day, a celebration of a birth.
Christmas is here and it is now over. It has been been excellent. We are in Washington with our son, Chris and wife, Denise, and their families. We have spent  time with our grand kids here and certainly eaten abundantly. It is our first major trip since the transplant and we had to navigate the coughs and sneezes of airports and airlines. So far, so good. Tomorrow, Denise and Chris, and Lynne and I will get to meet my stem cell donor, Brian Re and his wife Shannon. Since April I have looked forward to this day, a day when I would see Brian face to face and be able to thank him for his gift to me and I know, to my family as well. I have been wondering what to say to him. How do you thank someone for the gift of new life? All is set to meet them at a restaurant in downtown Tacoma, thanks to Denise. So who are they, what are they like, will it be a good and comfortable get together, so many things.

The Day and every day after, a celebration of new birth for me.
It went fantastic. They are a younger couple,(relative to us) with 3 teenage children. Shannon is a pediatric nurse at a clinic with aspirations of becoming a nurse practitioner. Brian, my donor, is a lieutenant in the navy and in charge of the refitting of the nuclear submarine, the USS Kentucky. It was good visit and the flow of conversation was so enjoyable as we broke bread and drank wine and celebrated the gift of new life As the evening drew to a close Brian gave me a medallion of the USS Kentucky, something I will cherish forever. Thanks again Brian. On the way home, Lynne said, "You have good blood".

You Are Not A Burden

"You are not a burden". The soldier had just come back from active duty and had been pretty badly traumatized. PTSD had been suggested and getting back into mainstream society was not going well. The counselor caring for him, first put his arm on the soldier's shoulder, then gently but firmly spoke a phrase, "You are not a burden". I did not hear much of anything of the show for awhile. Those words continued to resonate down inside of me. What a powerful statement, "You are not a burden". I flashed back to different times in my life when those words have been music to my soul. I have heard it often enough to sustain life. What a gift.

New International Version 1 Thessalonians 5:11
Therefore encourage one another and build each other up, just as in fact you are doing.

 

Make It Stop

Those of you who study books and learn from scribe and scroll
Will find rich fodder buried deep within the wounded soul.
Drink deep my friends from hearts inked black, as black as chunks of coal.
Now feel the ache that tears their gut, and doesn't let them sleep.                                      Without  a  break, the mind will spin as stomach acids seep.
Drink from their cup, and break their bread, and then behold their eyes.    
Hear with your gaze, see with your ears, the soul that bleeds and cries.
Then stay. Now dwell, 'til storm has passed, abiding close while floods do flash.
Torrential pain, and broken heart, it feels like all will  crash.
Hold faith and tarry still to exorcise the wound's cold icy grasp.
Then linger still as tempest churns, and cleanse the wounds and salve the burns.
And now my friend you are a friend and are forever touched,
By another heart as souls do meet, an another story clutched.










                              

The Whole Story

Twice a week, the 7 of us would gather in the library room, around the table, with our 2 supervisors, one at each end. This was called interpersonal group process (IPG). This was an opportunity for any one of us to bring up issues with which we would like to deal. It could be about  anything and we would invite feed back from the other students as well as the supervisors. The goal was to give each of us space and guidance for growth. Sometimes it was personal growth, sometimes it was interpersonal growth and sometimes it was to feed back on new things in our lives.

Let me back up. This was part of the Clinical Pastoral Education Process, a further training for Chaplaincy and to help us look at personal growth issues. In our group the way it worked was that we would all come in and have a seat and at 10 it would begin. The thing was, there were no rules as to how to start. If anyone had something to bring up they would ask for the time and they would go ahead. There were times it became nurturing and other times it could become very confrontational, by the supervisors or by the other students. There were very few opportunities to hide from things we needed to hear.

I recall one session in particular we came in and sat down and no one said anything. It was quiet and no one volunteered to raise any issues. This happened a couple of times after that. So one time after about 15 minutes of silence one supervisor observed that we had difficulty functioning unless there was something wrong with us or some one else in  the group. We had come to be so accustomed to dealing with problems and sick patients it was all there was. No problems then no conversation. He sited some stats about how many of our patients actually go home, improved.

I bring this up because I have come to see myself doing that. I do want to learn to talk about other things again besides my illness. My brother, Dirk, asked me one time if we talked about other things besides Leukemia. I told him, "No, not really".  That seems to be somewhat true for my Blog. If there are tests and things like that I write a blog about them. It is time to expand the conversation.

It Is Mostly Good

It is Wednesday and I had an appointment with the rheumatologist, Dr. Tayar, as a follow up and with the idea he would give me steroid shots in the shoulders to help with the pain again. It has been about 5 months and he had said I could get another shot if I needed one since the other one had been so effective. I brought him up to date on the neurologist, Dr. Loghin, and the EMG and the MRI she had ordered. So far there is nothing in those tests but neuropathy in both forearms and in the hands, mostly in the thumbs with carpal tunnel in both wrists. There is evidence of mild to moderate reduction in the sensory and motor function in the arms and hands and some evidence of a bulging discs at C-5 and C-6, but not enough to explain my symptoms. She has ordered more blood work and so we wait for the results of those. It was Dr. Tayar who recommended that I needed to see a rheumatologist in the first place for the tendinitis. After reading those reports he did an ultra sound of my left shoulder, the one that was the worst. It showed the tear, the same as the last time and perhaps a bit "brittle" at the edges. That was cause for concern and he started to speculate on what to do next. Steroids could increase the brittleness and maybe he should refer me to a surgeon. He decided it would be best to get a better look at things and that meant a MRI of the shoulder. Steroids might have an adverse affect on the images on the MRI. So the MRI  is on the schedule for Friday at 8:00 pm or anytime after that until they get everyone done. The last time it was about 10:30 before I got out of there. Out of all these tests there has been no, I repeat, NO SIGN OR TALK OF ADDITIONAL CANCERS. That's the "Good News". I was thinking last night that there was no big sigh of relief or release. I wondered, "Why not"? The answer that came to me, "There are more tests to go". Who knows? I am, however, more convinced now that there is no cancer there. All of these other problems are severely debilitating but that is the topic for another blog.

Three Steps Forward Two Back

It started last summer and at first blush it did not seem to be a big thing. Dr. Khouri had ordered an x-ray of my shoulders and there was evidence of arthritis in both shoulders. I was then referred to  rheumatology. Dr. Tayar recommended steroid shots and physical therapy. The steroid shots brought a great deal of relief and lasted about 5 months. It felt good and the physical therapy helped with the range of motion of my arms and shoulders. However, one of the exercises that the therapist used would cause a burning on the underside of my forearm. This is the "However" part of that sentence; the burning has continued and in the last 6 to 8 weeks it has increased and is bilateral and has moved down to the hands and more specifically to the thumbs. The bilateral part suggests somewhere in the neck the nerves are having a problem. So as I write this I am in the neurologist office for the first of three tests today, a electromyography (EMG), an x-ray of my left elbow, and an MRI of the c-spine.

So what goes through your mind? Any speculations? Well here's what we do. By we, I mean cancer patients. We think the worst. That's what we do. After all, we are cancer patients. We have already had cancer. We have had to come to terms with that "C" word before. No amount of denial, no amount of yelling, "Run the tests again. There must be mistake", will change the results. We have had to look this one in the eye before. And even if they say, " it's in remission", deep down inside we have a hunch it's still lurking in there somewhere. Remission never seems to have a forever ring to it. That's what goes through my mind. We are cancer patients. That's where I live. That "damned C" ended our son's life, has threatened mine, and could it now be back for the "knock out punch"? O how  the mind races down a road from "0" to "C" in 1 second flat. I have been practicing in my mind, the suspension of all my imaginings until we know for sure. That helps some.

Since I started this post this morning I have had my EMG. The Dr., running the test, speculated about the possible reasons for the mild to moderate diminished motor and sensory functions that showed up in both arms and hands. Nothing there on which to hang my hat though, but it could be as simple as an autoimmune inflammation of the nerves and now that I am no longer on the immune suppression meds it could reverse itself as my own immune systems gets stronger, or it could mean a round of steroids. It was good to hear. The MRI this afternoon should help fill in some more of the picture and we will probably not know anything on that until next week.

So we wait and wait and wait. And I go back and forth and back and forth (and you can add however many of the forths  and backs you wish). I could, at one time, go into denial but not anymore. The other night when I was feeling particularly low, Lynne and I talked about the possibility of another cancer. I wondered out loud, "Can I do this again?". And from deep inside I found myself saying out loud, "I think I can.". So knowing that, no matter what tomorrow holds, we know the One who holds it.

Really, Three Years?

Some folks have been wondering how I am, health wise. For the last 6 to 8 months I have been into the Dr.'s office every 2 weeks and the main indicator of progress is the blood test results and how I feel. Both of these are in the right direction and progress is measured by the month and not days. I have had a long battle with graft vs host disease (GVHD) right from the beginning while I was in the first days following the transplant. The donor's new cells and my old cells did not get along. They both see each other as foreign and therefore to be rejected, (actually a wonderful part of our amazing body's immune system). So immune suppressing drugs, like tacrolimus and steroids help with that. I have been able to be weaned from the steroids for awhile now but the tacro has been another story. I had been on 8 mg a day and gradually stepped down to .5 mg 2 times a week over a period of I year and 9 months because I would have symptoms of chronic GVHD, that the donor cells where still viewing my body as a foreign threat. LAST WEDNESDAY DR. KHOURI SAID WE CAN STOP THE TACRO. Will I be safe? We will have to watch for symptoms like, itching and usually on the legs in exactly the same places, sores in the mouth, nausea and vomiting, and just about any other things that are not part of the norm. The great part of all of this is that after about 3 years, from diagnosis to now, I can begin to have a healthy immune system. That's right 3 years and I am so thankful to be here, in the here and now. Thanks be to God!
 New International Version 2Peter 3:8
But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day.

Age Versus Age

On the side of the road stood a cool old car
Nothing but beauty, a red shining star.
'49 Chevys will surely turn heads,
No matter what shape, no matter what reds.

I thought for a minute and I had to smile.
I'll match that Chevy every mile for mile.
I'm a '47 been around  a bit longer,
But the looks for the Chevy, a tad bit fonder.

"Time Marches On"

So I'm down at MDA today, a follow up with the cardiologist with whom I became connected when I was a patient in the hospital after the SCT and I had a bout of Afib that didn't want to stop for awhile. I'm hoping this will be my last visit with him, since there hasn't been a repeat of that and the metoprolol seeems to be doing the job. I have had this issue for a few years before the CLL and was able to live with it. I shoud be able to do that again especially with the medicine.

At my last visit with Dr. Khouri they saw some evidence of GVHD again so they raised my Tacro again instead of being able to discontinue it. It's the 3 forward, 2 back experience and Isaac is willing to wager a lot, that if I stayed inside more and out of the sun and heat I'd be much further along. Over the past 2 weeks I have done better and we will see next Wednesday if it is working or as Isaac would say "that it is working".

There has been a major shift on another front for me. I'm beginning to see other things besides Cancer lately. Dirk had once asked me if we talked or thought about other things besides the leukemia. I had told him, no. Well, that's beginning to change. I'm not able to forget about it but the thoughts are not as weighty or as frequent.

Those of you in the "Van Sligtenhorst clan", I want to give you "a holler and send y'all our love and greetings" at the family reunion. We have fond memories of our time at the last one we attended and have intentions of making another one, maybe next year. The last time was a great reconnecting for us and much has changed since then and will continue to as well, so time to do this. Well that brings us up to date and we will be in touch.

Time Marches On Lyrics

       Song by Tracy Lawrence

Sister cries out from her baby bed
Brother runs in, feathers on his head
Mama's in her room learnin' how to sew
Daddy's drinkin' beer, listenin' to the radio

Hank Williams sings "Kaw Liga" and "Dear John"
And time marches on, time marches on

Sisters usin' rouge and clear complexion soap
Brothers wearin' beads and he smokes a lot of dope
Mama is depressed, barely makes a sound
Daddy's got a girlfriend in another town

Bob Dylan sings "Like A Rolling Stone"
And time marches on, time marches on

The south moves north, the north moves south
A star is born, a star burns out
The only thing that stays the same
Is everything changes, everything changes

Sister calls herself a sexy grandma
Brothers on a diet for high cholesterol
Mamma's out of touch with reality
Daddy's in the ground beneath a maple tree

As the angels sing an old Hank Williams song
Time marches on, time marches on
Time marches on, time marches on
Time marches on, time marches on

Songwriters
BRADDOCK, BOBBY

Maybe a bit dark and sometimes they are.

Memoria

'Pagó̱sei sto chróno'. " Frozen in time". That's the way it happens. We will not know what Josh would have been like at 41 or 45. He is frozen forever in time in our minds and to me he has not aged a day since his illness and his death. When I recall his look of pain, it is unchanging. When I picture his smile it is forever the same. I have often tried to imagine what it would be like to see him age with us, to grow older together, and to share the stories of that journey. Try as I might I cannot. Each time I try, he is forevermore the same. "Frozen in Time", 'Pagó̱sei sto chróno'. In the Greek there are 2 words for time, 'chronos', which would be chronological time, and kairos, which would be "In God's moment" or time.  Chronologically  in my mind Josh is frozen in 'chronos'. In God's time? Who can fathom what he has become?



New International Version (©2011)
But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day. 2 Peter 3:8

3 Forward, 2 Back

The last time I posted I had said that medicines had been decreased and that the rate of change had been accelerated. Well things have changed again. After decreasing the tacrolimus, I developed some GVHD and so they raised the immune suppressor back up again. There also seems to be some issues with the liver so there is another medicine for that and this past week I developed some phlebitis in my leg, thankfully no blood clot, but there's an antibiotic now for that as well. But then again this disease has never gone in a straight line. I am never surprised, disappointed yes, surprised? No.

It's Kinda Like Normal

Today, July 11, or 7/11,   I had my final infusion of Pentamidine. I have been getting this antimicrobial medication every 3 weeks since my transplant as a preventative for Pneumocytosis pneumonia and each infusion along with premeds and waiting usually took about 2 to 2 1/2 hours. Having been immune suppressed I was a risk for contracting that nasty pneumonia often fatal for people whose immune system is down. Guess what? Not so any longer. It is getting stronger. I have been stepping down on the Tacrolimus, from originally 8 mg daily to 1/2 mg every other day and there has been no Graft vs. Host disease so I'm thinking they will eliminate it all together. Once that goes it means others will follow suit. It's kinda like normal, but not quite. There will be much, about which to poke and prod  for several years yet or at least for my earthly forever. Yes I'll enjoy my 7/11.

Cancer Changes Everything

Today is not a "good day" as I look out at the world. I did not hear the alarm for at least 10 minutes. I was in a deep sleep, something I cherish of late and not very frequent. We have had ant problems in our house despite multiple treatments around the foundation. For some reason they have infiltrated my bedroom and they have taken over my bed. Lynne has changed the linen repeatedly and yet last night there they were again. So I felt irritated when I woke up. I have a 7:30 appointment at MDA and will be there all day, also a source of irritation. I get ready and then I cannot find my wallet. Then it hits me, I left it in the work truck and Pedro has the truck. I manage to coordinate with Pedro to meet him at his apartment to pick it up. On the way I realize I am still in my slippers. I forgot to put on my shoes. So I make it to MDA and my first stop is to have blood work drawn, usually routine. Not today. First stick, a little blood. The phlebotomist tries to move the needle  back into the vein. Ouch! Let's try the other arm. That one resulted in only producing more pain. There is a rule. You get 2 tries, that's it. Bring in someone else. He gets it first stick. The worst ever was 3 different nurses and 5 sticks. That brings us to the present and it is only 8:30. That leaves the rest of the day for much more to set me off. Here's the thing. None of these are catastrophic or big deals or that big a deal. It goes more to my state of mind. I am feeling tired of being here at MDA, for what seems like forever. I don't like to be constantly struggling with this disease and being constantly reminded of it. I have developed arthritis in the shoulders and probably in the back as well. Next week they will do steroid shots for the rotator cuffs and check for torn ligaments. I struggle some days with growing old gracefully and try hard to remember to be thankful to be alive. There are some days I can do that and when Lynne asks, "Are you OK", I try to answer, "I will be". Other days it's a crape shoot. Today is one of them. Can it just be over?

 

Ecclesiastes 12

New International Version (NIV)

12 Remember your Creator
in the days of your youth,
before the days of trouble come
and the years approach when you will say,
“I find no pleasure in them”—
² before the sun and the light
and the moon and the stars grow dark,
and the clouds return after the rain;
³ when the keepers of the house tremble,
and the strong men stoop,
when the grinders cease because they are few,
and those looking through the windows grow dim;
⁴ when the doors to the street are closed
and the sound of grinding fades;
when people rise up at the sound of birds,
but all their songs grow faint;
⁵ when people are afraid of heights
and of dangers in the streets;
when the almond tree blossoms
and the grasshopper drags itself along
and desire no longer is stirred.
Then people go to their eternal home
and mourners go about the streets.

⁶ Remember him—before the silver cord is severed,
and the golden bowl is broken;
before the pitcher is shattered at the spring,
and the wheel broken at the well,
⁷ and the dust returns to the ground it came from,
and the spirit returns to God who gave it.

⁸ “Meaningless! Meaningless!” says the Teacher.^[a]
“Everything is meaningless!”

The Conclusion of the Matter

⁹ Not only was the Teacher wise, but he also imparted knowledge to the people. He pondered and searched out and set in order many proverbs. ¹⁰ The Teacher searched to find just the right words, and what he wrote was upright and true.
¹¹ The words of the wise are like goads, their collected sayings like firmly embedded nails—given by one shepherd.^{[b] 12} Be warned, my son, of anything in addition to them.
Of making many books there is no end, and much study wearies the body.

¹³ Now all has been heard;
here is the conclusion of the matter:
Fear God and keep his commandments,
for this is the duty of all mankind.
¹⁴ For God will bring every deed into judgment,
including every hidden thing,
whether it is good or evil.

Quick Update

It has been awhile since last I posted. In the mean time we have been harvesting from the garden in abundance. We have been eating beans and potatoes for at least a month now. Beans are pretty much done in this heat. We only dig the potatoes when we need them. Cucumbers have been good as well. Now that we are close to hitting the triple digits in the shade that part of the garden is done 'til fall. The tomatoes are just coming in now and we get about a month of those before the heat gets them.

I have been doing well. I'm slowly stepping down on my immune suppressing meds and in a couple of weeks I should be off them altogether. That changes everything. I will begin to be able to participate in the things of day to day life more. I just finished my 15 month post transplant check-up and the results of the CT and Bone Marrow Biopsy should be back any day now. I am keeping busy with equipment in the morning and come inside in the afternoon heat and sun. I will give the results latter this week.

The Private Grief Continues

It has been 2 years now since Josh died. It is still very painful, the remembering. I have nothing much to say or add to that because our remembering  and continued grieving is very much a familial grief. This past weekend Lynne and I went to Dallas and we saw Kate confirmed and had a part in the service. The Gospel was John 14:25-31. Only we knew that the first part of John 14 was the scripture for Josh's funeral and now the last part for Kate's confirmation.  All of this very private and known only to family. The public grief of 2 years ago has moved to private grief and the waves of emotions today will be tearful and great. Josh we miss you.

Shifting and Maturing, The Days of No More Options

All the things Dr. Khouri said were and are good ideas. No sunshine, no heat, no fresh fruits or vegetables, (well actually they are okay now), no gardening or else. I admit to crossing the lines. I have come to appreciate how entrenched my orientation to life is, which includes what I do and how I do it and it is not easy to change. The hardest one for me is to stay out of the heat and out the sunshine. Dah! I have lived outdoors. Now what am I to do? I remember hearing echoes from an earlier time that I needed to develop hobbies for the time when I would be retired and needed things to engage me. Well all of those plans had included the outdoors and dirt and plants and gardens and sunshine and heat and nothing on that list included the indoors or indoor activities. Wait a minute this doesn't work. When I stayed indoors I got bored. I do not read and do not enjoy reading. I fall asleep during movies. And after awhile I am in Lynne's hair. I have come up with some partial solutions. I go out early in the morning before the sun is overhead and it is hot and  I do what I need to then. I have crossed the line on working in the garden and I do use the riding mowers when it comes to yard work and there seems to be a good balance there. I know there are risks and it is  calculated into this. I do much better with this new balance and function better. I had some of my best results so far on my blood counts this past month and the Dr. has reduced the immune suppressing drugs by a third this past month. That's the one that gives the stem cells and my body a chance to get along. It is also the one that puts a strain on the organs like the kidneys and depletes the magnesium. So that was a big step. As to the garden we have been digging potatoes, started picking beans and the cucumbers are just about ready to start and the tomatoes are beginning as well. The peppers will be awhile yet, and the herbs have been ready for some time now.

So I'm finding ways  to live out these last years of my life and they are just that, the last years, perhaps 5 more according to stats for stem cell transplant patients. I've come to look at them as the Days of No More Options. I must make the most of them.

A Safe and Healing Place

http://www.youtube.com/watch?v=CWIq09wGwKk&feature=youtu.be
This video was put together by Isaac and was a grand effort to give a visual of how our house came to be and all the memories that we had along the way. Isaac gave it to us for Christmas one year. Thanks  Isaac. You captured the spirit of this place well.                                                                       


 Looking back on it now it was quite an endeavor, this building of the house. I can appreciate what folks do when they undertake a long term project. This was long term and we were committed to doing as much of the construction ourselves as we possibly could. It took 10 years of weekends, evenings and whatever time we could find to get it to where we could move in. Our sons, especially Joshua our carpenter, helped, as well as in-laws and brothers and grandchildren and neighbors and people who worked for us. It really was a combined  effort. It's modest in size, only 1200 sq. ft., and looks somewhat like a chalet. It has many a personal touch added in. My reason for sharing this is to make a huge point. This has been a healing place for us and a safe haven through these turbulent days. We took care of Josh on different occasions here and he and I sat on the couch together while Lynne gave herself up caring for him and I. While we said good-bye to Josh, he is still very present with us, with all the memories in the building, his touch here and there and everywhere. It is as though this  has been prepared for us for this time, a place of green pastures and still waters, a safe passage through stormy waters.

Psalm 23

New International Version (NIV)

Psalm 23

A psalm of David.

¹ The Lord is my shepherd, I lack nothing.
²     He makes me lie down in green pastures,
he leads me beside quiet waters,
³     he refreshes my soul.
He guides me along the right paths
    for his name’s sake.
⁴ Even though I walk
    through the darkest valley,^[a]
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me.

Anything will help

Up ahead I turn left, and there he would stand
On the esplanade with cardboard sign in hand
And most every time when the light was red
I'd get some money for his sign had said,
"Anything at all will help.".

With his cane in hand and grasping his sign,
He'd come to the window and just in time,
And speak his thanks for the bit I had shared,
For the light had changed and no feelings were bared,
Least of all anything that might help.

I go by that light about 3 times a week,
So my eyes scan over to take a peek.
I reach for my wallet for there he stands,
his cane and his sign grasped in his hands,
Looking to any for anything helps.

Sometimes we chatted and he talked of his life.
No kids and no work and he had no wife .
He  cared for his mother at age eighty four,
In exchange for a room, a roof, and a door,
So anything would help.

The last times I drove by there including today,
He hasn't been standing at his appointed stay.
And my mind goes to wondering if he is alright,
Has he found another corner a more lucrative site,
Because anything does help.

The corner stands empty, none take his place.
It's like most corners, cars, lights and space.
There's an empty spot now that he had once filled.
Strangely enough, it was I that felt chilled.
For anything he was to me really does help.

Cancer Survivor

 

April 18, 2013

concerns

From the web comic xkcd, this kind of honesty can only come from someone who intimately knows cancer.

Point Of Reference

We were talking in the Stem Cell Clinic waiting room. Suddenly I realized I can not imagine my life ever again without cancer. I also realized how it has begun to shape my life morphing so to speak into the new life. I have no idea when that happened. Well I guess I do. It was when I busted my back and also found out I had cancer. Everything changed then. But I still had this notion of denial , that everything would go back to the way things had been. What I suddenly felt in that waiting room that day was this: I, along with all the other patients in this room have CANCER and will have CANCER in some form or another for the rest of our lives.

The above was the beginning of a post that I had worked on in October of last year. I guess I have become accustomed to this new modality. So my condition is that I don't have cancer, that's correct, that's straight from the Doctor's notes and his mouth. So am I a cancer patient  then or not? Lynne said that it's in remission. I thought that Dr. Khouri said all the cancer cells are gone, so maybe I'm a transplant patient. She said that the better word was cancer survivor. That works for me.

Nevertheless I am irreversibly changed forever. It has been the focus of this blog for a year and a half. It is the thought on every body's mind when they ask about me. So what I am challenged to do now is wrestle with what that means to me. That should keep going for a few years and  thankfully, those I do have.

Can I Interest You In A Fireplace Extraordinaire

When we built our house we decided we wanted a fireplace, especially Lynne. She loves a cozy fire. So it was decided. She did not care much about what kind as long as it burned wood and created a warm spot when it was cold outside. My thoughts went more to the idea that it should heat the house as well. Most open fireplaces suck as much heat  out of the house as  they create and then with the open flue when the fire is out they actually create a colder house even though it may be warm in front of the fire. So we shopped around  and we looked and scouted the Internet and even visited fireplace stores up in Mich. We finally settled on a fireplace, called the Extraordinaire, that was EPA certified clean burning and we found it in Conroe. It will heat up to 2,400 sq. ft. and give all the ambiance we need. With the benefit of a ceramic honeycomb catalytic burner, almost all the gases and smoke and particulates are burned and turned to heat. And on top of that we installed it ourselves. So here's the deal. Before my cancer when ever we had folks over they were on the receiving end of my spiel about the stove's magnificent characteristics. It pulls in outside fresh air for the firebox. It pulls in fresh air to be heated and  blows that warmed air into the house, the warm air then creating a positive pressure in the house. There are no cold drafts anywhere. The whole house gets heated except for an upstairs bed room, and that's good. You can open the glass doors for an open fire. You can close them and control the burn rate, and watch the fire through the glass doors while the fan disperses the heat into the room. We have not run the gas furnace this entire winter.We get plenty of wood by scrounging and taking down trees for customers What's not to love? Alas! It's a small disinterested audience. I'm a zealot without an assembly, that's what I am. Maybe a salesman for Travis Industries, the manufacturer would work? Naw I'll just go ahead and continue to bore our guests. Wait, did I just bore you?

Slower Than A Roach

The process of aging is an interesting one. One of the things that has been happening is my ability to keep up. I'm getting slower. Sometimes I don't realize that I am getting slower, but there are reality checks. I had one of those this morning. There was this roach,  (we do grow 'em big here), in the kitchen. There was a time I could catch them, quicker that a flash, like a fly in the air with my hand. This one escaped my swipe with a towel and he went to the floor and he out ran me from there in the open stretch. Chalk up another first. I'm slower than a roach.

Poignant - And To The Point

Prayers go up from the hearts and minds and voices of so many for the victims of the Boston Marathon Bombing. There are so many questions, and the highest on the Richter scale of all this insanity would have to be "Why?. Why in the world would anyone do this. A reporter that was doing a live  update summed it up well when he was referring to the incident, said "this shitty- sorry city -------". He was not denigrating Boston but rather what happened there. Slips of the tongue are poignant.

How Does The Clock Work?

I was sitting outside the other day and my gaze goes to that spot about 40 feet up on that dead pine tree and there on the side of the tree is the woodpecker hanging on to the bark about 6 inches below the hole they had made. I went over to the tree to take a closer look and there in the opening I see the red head. It appears there has been a change in the neighborhood, the blue folks have moved out and the redheads have moved in. They must have made an offer  that they could not refuse. So we will watch the redheads instead. I think I've spotted another possible site for the bluebirds in another  pine tree that died from the same drought. It's not easy to see from where I tend to sit. It's always interesting to see how people feel about the change. Some just don't like change and so are saddened when change happens. Others side with the more aggressive birds like woodpeckers and then others with the bluebirds who are more shy and stay out of the limelight. In nature, change just is, and it does seem to favor some and there are "pecking orders" without regard for feelings and fairness. Some of that does translate to the hunan world but we work hard to be equitable and fair. Being moral does not rid us of our natural instincts. Well enough of that. I had not intended to go in that direction. I was just going to update you on the birds. As my brother, Dirk  would say, "If I ask you for the time, you don't need to tell me how the clock works".

Emoting: It's Not A Bird Disease

In response to an intense Interpersonal Group Session, through tears and sniffles, George said, "I don't know why we have to be emoting all the time?". It was hard for George to embrace the intense emotions we all are capable of experiencing, and when he got close to his emotions  he wanted to shut down. Finally he couldn't hold back the tears and he began to "emote" as  he would call it. When I heard the word I chuckled. I was not familiar with it and thought it sounded more like a bird disease. George gave me  a word that has been a good reminder, to  me, that what's inside, especially if it's been bottled up it needs to come out, even though "emoting" sounds like a bird disease.  Consider the following.

Friday, was a big day. Didn't realize how big it was until after Friday night and Saturday. So I will work backwards.  Saturday I am exhausted. Lynne is as well. We functioned as though we were drained of every thing. No gas left in the tank. Well, that's not entirely true. I produce lots of gas. What with all the magnesium I take. I digress.  Both Lynne and I are tired and spent. And looking back I know that I only slept about 3 hours on Friday night. Lynne also slept not well. Maybe a couple of hours of deep sleep between the 2 of us. As I traced our emotions for Friday every thing was right there just under the surface.

 For example as we walk through the lobby at MDACC here comes a kid, no more than 7 years of age, no hair, pushing his little brother or sister in a stroller and they are laughing. Lynne went to tears immediately and I shortly after for the child as well as for Lynne because I know her heart. "The Suffering of the Age of Innocence" should be a title of a book. So that was one clue we were primed for some ups and downs.

 Number  two was, I had received a call from the Stem Cell Donor Search Office. Katherine called to let us know that the donor of my "life saving" stem cells had agreed to get in touch with us. One year after the transplant we are asked if we would like to know the donor. We have to wait a year for many different reasons and it is part of the protocol. We had said "Yes". Katherine would have the envelope at the desk for us with the contact information about the donor in it. The envelope please?  We had it in our hands and there was no good time to open it right there so we opted to wait until we got home. When we got home I opened it and as I did the emotions came to the top again. So we knew that, that going into today, that we would get this name of a person who was a complete stranger to us.

Then of course an obvious third  reason is what I posted yesterday, the results of the CT scan. It even crossed my mind that when I imagined thanking Brian, yes his name is Brian, would I be thanking him for 2  or 3 years or will this go through some  many more birthdays. Either way I am thankful. I, who am a stranger thank him for his gift to me. Now we are no longer strangers. The emotions flowed freely again as I opened the envelope. I said that twice didn't I? Can you see we are bouncing all over the place?

 And fourthly, March 8th is the 1st Birthday of my new life, thanks to Brian and his stem cells, and today, April 14th, is the day I thank, my deceased Mother and Father, for my physical Birthday, number 66. (No you can't do anything with  just 2 sixes.)

And finally, there is another element worth sharing. While Lynne and I were talking I had said to her that it was such a relief to hear those words from Dr. Khouri. And she said something to the affect, that I could not hear that form God, that it took a man to give me that release. I truly do see him as God's gift to transplant patients. He does his job well and shares his gifts to many and especially  to me. The point is that for low these 2 years I have been in a battle, fighting a disease that wants to kill me, emotionally and physically and passing the 2 year mark as a survivor in January and 1 year as a Stem Cell survivor in March and now the spot on my lung is going away and is naught  about which to be concerned? That's big. They are big ones for me and I was seeing some light on the horizon and not a light in a tunnel and that is huge, so very awesome. And to punctuate that, Dr. Khouri said I don't need to come back for  ONE MONTH. That's four weeks. I will miss you, "my friend" for those weeks. ("My friend", was his salutation to me when he entered the room.)

There is much for which to be "thankful" and we are. And again I say, "Alright" with the left arm raised as a salute of praise.

"If you help someone from whom you expect a return, what credit is that to you? That's the kind thing, and a good one, that every one can do. But if you do good things without expectation of any thing in return, then you will children of the Most High and your rewards will  be great." Luke  6:34-36 ( Abe's paraphrase)

And don't forget how I have been given a new life by the blood of another. That's quite a metaphor. Thank you Brian.

DANG! I forgot the Kleenex! Posted by Lynne

 DANG! How could I forget the Kleenex?  First, I dropped Abe off at the patient drop-off, he was feeling nauseous and going up 12 floors of circular parking is horrible for him. So after parking, I head to floor 2 for the blood draw. I stop. I remember. This was where Isaac said to Josh after his blood draw, "Wait here-I'm going to get you a wheelchair", one of the first indications Josh was getting worse. It was so painful for him to just walk.
 I fight back tears.
I sit there waiting for Abe remembering-thankful it's not so often anymore that we have to come here- to MDA-where almost every hallway and floor holds so many memories. " My blessed boy-you fought so hard for so long."
I fight back tears.
Then, Abe is done and we're heading for his CT scan-and coming right at us smiling, and pushing his baby brother in a stroller,Mom following, is this little bald-headed guy,probably 5 or 6. He is laughing, looking so happy with not a care in the world-and did I mention- BALD.
Damn- I can't fight the tears now-they start streaming down my cheeks. I swipe desperately at them, trying to make them stop.
They don't.
I hear Abe sniffle, he turns to me and I say, Dang- I forgot the Kleenex, do you have any? No, he doesn't, as we both continue to cry. No words are necessary-he puts his arm around my shoulders and we continue our journey to Diagnostic Imaging.
    I'm praying the spot on his lung will be gone-AND-I'm also praying for that little guy.
      "God speed, little one."
DAMN-I HATE CANCER.

Sitting at MDACC, March 22, 2013, Posted by Lynne

22 months on the 22nd, and it was on the 22nd of May 2011 we lost Josh. Now we're seeing Dr. K. for Abe - a spot on his lung. Again? Really? As I was walking in, the security guard asked if I needed help finding anything. I practically yelled back, "No are you kidding me? I've been coming here for 3 years! I know this place like the back of my hand!

I was so rude - that's the anger coming out - I don't want to be here - AGAIN - wondering - now what - Is  Abe going to get a different cancer? Now? Really?

"What If Frogs Had Guns"

I found myself playing  the,  "what if"  game. You must know that one, the one where I find myself wondering,  "What if there is something in my lungs, something that lurks in the dark recesses of the trachea, and what if it has spread and needs to be treated with chemo? How will I handle that?".  "What if?" "What if?" "What if?" That started at 4:02, in the -- AM. By 4:03 I'm wide awake. I go to obsessing pretty quick,  you see, from 0 to absurdity in 4 seconds flat, rivaling  that of a Mustang Cobra in the 0 to 60 and with the same venom to the soul as a cobra to life. I know where this is headed. It's not pretty. "You do that?", you ask.  Ohhh yes and I'm no fun to be around when I do such things. Chris, our son had a good line that always pulls me up short. He said one time, "What  if frogs had guns?". I said, "What?". He repeated,  "What if frogs had guns?". "What does that have to do with anything "? His response? "Snakes wouldn't mess with them".  I repeat that story to myself at 4:04 to break that race to absurdity and put a smile on my face. My sleepy time, however, is shattered like the sound barrier and by 4:10 I get up.

So today I am  off to have my follow up CT scan and off to see the wizard, Dr. Khuori, who is no wizard at all, only a doctor whom God has gifted and shares His gifts with us through him.  At 10:45 I have my blood work- right on schedule- and then off to Diagnostic Imaging to be serenaded by the hum of  Computerized Tomography,  while I lie flat in a tube being told when to breath and  when to hold my breath. I get prepped and -right on schedule- I go in for my scan. It takes 10 minutes- right on schedule. The Right on Schedule, is a fantastic anti-obsessing medicine for me and  after taking 3 doses dispensed by the  MD Anderson Cancer Center which has a notorious reputation for being stingy in being timely with any clinic or procedure and doing it on a day that 1 of the 4 scanners on this floor was busted  so that when I get to Dr. Khouri's office I am, believe it or not, - ahead of schedule - and he comes in early,  and for a second I am wondering "what if he already knows". He gets through the pleasantries and we ask, "Have you seen the CT yet?" ignoring the fact it has only been  an hour since the scan. How could he have possibly seen it yet? And he said that it had not yet been posted, so he finished the exam and went over medications and issues and questions and as he left he said, "Let me check the computer one more time and see if there are any results yet". He comes back in a couple of minutes and said the radiologist had not reported yet but the CT scan was posted and his assessment was that the spot they had been looking at was diminished and was likely, as suspected, a left over, from a slight cold infection. My  left arm shot up along with my shout of "All right", which is  my secular  abridged version of "hallelujah ".                                                                                                                                                                     New International     Version (©2011)  Matt. 6:34                                                
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
New American Standard Bible (©1995) Matt. 6:27
"And who of you by being worried can add a single hour to his life?

Silly me.                                                                                                                                                                   

The Fruit Ripens In The Garden

Almost every time I see my oncologist I ask if I might put my hand to the hoe and and do some digging in the dirt and the reply to the hoe is always a "no". The good time to plant will soon have passed, so it's time to move before the sun's hot blast. Through various tricks with gloves and rototiller and masks and hoes and rakes and the help of Llew, our grandson, we were able to plant the garden this year. We've eaten some radishes already. Cukes are up as well as the beans. Potatoes are about a foot high. Tomatoes are blooming, Herbs are looking lush, thanks to Denise and Chris, our son and his wife here for my 1 year anniversary. We've had a nice spring with a quite a few cool evenings, excellent for vegetables. Everything is looking good. It's a good metaphor for my transplant bearing fruit. Thanks be to God for ALL his goodness.

Written by Cecil  F Alexander , "All Things Bright and Beautiful"

Refrain All things bright and beautiful, All creatures great and small, All things wise and wonderful: The Lord God made them all. Each little flower that opens, Each little bird that sings, He made their glowing colors, He made their tiny wings. Refrain [Most hymnals omit the following verse] The rich man in his castle, The poor man at his gate, He made them, high or lowly, And ordered their estate. Refrain The purple headed mountains, The river running by, The sunset and the morning That brightens up the sky. Refrain The cold wind in the winter, The pleasant summer sun, The ripe fruits in the garden, He made them every one. Refrain The tall trees in the greenwood, The meadows where we play, The rushes by the water, To gather every day. Refrain He gave us eyes to see them, And lips that we might tell How great is God Almighty, Who has made all things well. Refrain

God’s Creatures, by Eugene de Blaas (1843-1931)

---

There Is A Bluebird In Our Pine Tree

There are bluebirds in our pine tree. They have set up house and are building a nest, the first one that we will be able to see and watch while they nest and raise their young.

Faith - the assurance of things hoped for.

It was something that Robin Roberts said. It has stuck with me and been ruminating for a couple of days now. It was the bit about never knowing for sure, that if you have been treated for cancer there is always the chance that other problems can come up, like other cancers. She was treated for breast cancer in 2007. I was aware of that bit as well. She said that she has always been an optimistic person but it's not like that any more. What I had forgotten was that it  sits there in the back of my mind. And then I contrast that with a man that is 102, interviewed at the Rodeo this year, looks healthy and happy, and in the back of my mind I am convinced I will not make it to that age and if the truth be known I live with the notion I am still far from out of the woods and if age could be chronicled in miles I have put on a lot of miles this last 2 years and the wear and tear shows. That just lurks there all the time. What will happen next? I have been blessed. Like Ms. Roberts, I'm not always optimistic.

Well this blog has been there, just sitting there for a couple of weeks now. Since then I have had another CT scan, as is the custom every 3 months. The reason? Because anyone who has had chemo and or immune suppressing drugs is an easy target for other opportunistic ailments to set up camp, more specifically other cancers.  On the scan, there was a spot on the lung that was not there before. Likely answer? A left over spot from a slight cold I had had a few weeks prior. A suspicious mind like mine has gone down other roads as well. Another CT scan on the 12 of April should tell us more. So we wait, but it's probably nothing. Dr. Khouri, Dr Isaac, and others said so. They can still be optimistic. It's easy, isn't it guys?                                                                                                        New International Version
Now faith is confidence in what we hope for and assurance about what we do not see. Heb. 11:1

2 Birthdays!! What a Life

Today is March 8, 2013. and that is one year after March 8, 2012, the day I received my
Stem Cell Transplant - a whole year. Wow. It is hard to believe that we have come this far and more specifically, how far I've come. Sometimes you can't tell from one day to the next that the grass is growing - can't see it can you?  a month later though wow what a difference. That's kinda the way it has gone for me. Day to day, not much But a month - that's different and now over 2 years since my diagnosis and a year since my transplant I'm doing very well and the rate of change seems to be accelerating and I'm having fewer bad days and more of the better ones.  Thanks y'all for your prayers and your messages and support. When I received my stem cell transplant everyone wished me a happy birthday for the new life I had received. As I thought about it at different times today I choked up. Lynne made a special dinner to celebrate to commemorate it. 2 Birthdays!!! What a life!!!

I Think They'll Take It

I have not seen the woodpeckers in a few days now. Yesterday the pair of bluebirds was doing the home inspection bit for quite awhile. It's a modest home, a  1 nest room, a tiny front perch, roof looks good, but the view - spectacular.

There's A Bluebird On Our Pine Tree

Back in Nov. of 2011 I posted a blog, "Birds of the Air" and I wrote about the trees that had died because of the drought. It was a particularly painful blog and we continue to wrestle with God's caring in light of Josh's dying.  One of my favorite past times is sitting, especially in the morning and the evening, ah heck it's any time of the day, and watching the birds and I guess the trees as well. One of those trees that died started to lose some branches. Then the top blew out in a wind storm. A couple of woodpeckers have been working that tree for several months now and coming back daily for breakfast, lunch, and dinner. They have pecked a larger hole in one place and these birds have been known to nest in those. Last week Lynne and I were sitting outside and we  noticed a couple of bluebirds on the very top of the tree. They nest in similar places. One kept flying down to the hole and hovering there. The other never did follow. The male bluebird looks for nest sites and will wait for the female's approval. I have lots of time to see which, if anyone nests there. My bet is on the woodpecker. "Birds of the air and trees of the field.", I like that phrase. That tree has some life left I guess and still sustains life. Amazing. Even in death.

 

 

Isaiah 55:12

New International Version (NIV)

¹² You will go out in joy
and be led forth in peace;
the mountains and hills
will burst into song before you,
and all the trees of the field
will clap their hands.

 

That's Romance

Spent the day, and it took the whole day, getting a 90 minute infusion of pentamidine - my point? It is this. Cancer patients spent a great deal of time traveling, waiting, testing, being testy, being poked and prodded, and slowly healing - yes healing on Valentines Day. Romance? I've nothing left when I get home. I  had hoped to make dinner. It didn't happen. Microwave? Yes. But I have no appetite. Do you know what was wonderful though? Lynne understood. In fact she was the one who talked me out firing up the grill because I have a touch of sore throat and the smoke would not be good for me. If you recall she spent her birthday at the hospital with me. Cancer patients need strong support care takers. I have one of those. She has been there every step of the way. Thanks and Happy Valentines Day, Hon.   
New American Standard Bible (©1995)
Enjoy life with the woman whom you love all the days of your fleeting life which He has given to you under the sun; for this is your reward in life and in your toil in which you have labored under the sun.  Ecclesiastes 9:9

Waiting For The Sign

The weather is cooling again. Today the mercury did not visit the 60's. So I lite the fireplace. Just enough to take the chill out of the air and the bones. When I first ignited the paper to get the draft going up the chimney the smoke was white. Oh, oh.  I had to quickly add some wood. That first smoke ascending was white and it might mislead some to think a new Pope had been chosen. Now the smoke is black and grey, the color of limbo. The world awaits with bated breath. But I suspect it's not my chimey to which they look, is it?

First Impressions

  I park the car and walk to the elevators. I push button 3. It takes me from the parking ramp to the skywalk over the street below into the main clinic of MDA. I've taken this trek hundreds of times,  hundreds. It's routine. Then I go to elevator B and that takes me to the Stem Cell Transplant Clinic on the 8th floor. But I get ahead of my story. There is a Security Guard Station on the 3rd floor just after you get off the skywalk. As I'm walking I guess I was preoccupied and in the back ground I hear, "Sir." And within a couple of seconds, again, "Sir". Then a third time more loudly and authoritatively, "Sir". I stopped and turned to look at what was going on. Was there a problem behind me or something, but she seemed to be looking at me. "Yes?", I said. She asked, "Where are you going?" I was startled. "Excuse me?", I asked. I wondered if I had absentmindedly gone down the wrong way and I looked up, and no, this was the correct hall. "Where are you going?", she asked again. "To my appointment." "Where's that?", she asked, and added, "I've never seen you before." And I told her I was headed for Stem Cell Transplantation. And after a few exchanges she must have figured I was safe and let me go ahead.

Those of you that know me understand I do not dress up. In fact it has been said I dress down. I also seldom go anywhere without the felt hat Lynne had given me years ago. My picture ID at MDA has me wearing that hat. Today I was not wearing it. When I told, Lisa, the nurse that I had been stopped by Security, she had a good laugh. I figured it was time to spruce up a bit. The next week I had trimmed my beard, Lynne gave me a hair cut, and I wore my hat. Not one more problem with security.

What is funny about this story is that for a second I was startled that someone would see me as perhaps a homeless or some kind of undesirable person. Clothes do make a difference. That same hat can be folded, washed, and just about anything and be put back to shape in a few seconds. And if I fold the sides down or turn the hat sideways I can drop my IQ by appearance, at least 30 points. All this is funny now but for a second I wondered what the security guard saw.

A Strange Place To Give Thanks

I did some thing I have never done, nor ever expected I would. I called a phone number on the back of the rest room stall. No no. Not the, "for a good time call ....". This is the one on the door of all the MDA restroom doors. "If you have soiled yourself or your clothing call ........... for assistance." Some one came with aids for cleaning, a pair of scrubs, and socks. Thank goodness for cell phones. This is but one more way this #&*#@!  cancer and its treatment  takes its toll and the way MDA has anticipated the needs of we the patients. This disease not only takes our health, it also robs us of our dignity.  #$@&*#@@## CANCER. Thanks for MDA.

Ready, Set, Everybody Jump!

We were at my brother's farm and we all went out to the gravel pit for a bonfire. A bunch of us went up on top of the hill above the  gravel pit below where the fire was. We play a game of dare. Who would jump down and go down the gravelly cliff to the bottom, probably 75 feet? We end up all doing it. A few tumbles and rolls and gravel flying and a few bumps and bruises and we made it. But I was much younger then. When I heard last night, that we might go over a physical cliff, I took a few extra pillows to bed because this could hurt. You see, I'm not as nimble any more. Wait, I just saw the news story in print - fiscal cliff? I guess pillows won't be any help for this ride.




                                                             Happy New Year