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.