Today

—Rev. Thomas A. Dorsey

Take My Hand, Precious Lord

Precious Lord, take my hand, lead me on, let me stand
I am tired, I am weak, I am worn
Thru the storm, thru the night, lead me on the light
Take my hand, precious Lord, lead me home.

When my way grows drear, precious Lord, linger near
When my life almost gone
Hear my cry, hear my call, hold my hand lest I fall
Take my hand, precious Lord, lead me home.

When the darkness appears and the night draws near
And the day is past and gone
At the river I stand, guide my feet, hold my hand
Take my hand, precious Lord, lead me home.


     The choir was singing this hymn with all the emotion that a choir can. They harmonized, they swayed, they lent their own feelings to the lyrics and to the melody. It truly was beautiful. It was as though everyone was acquainted with the metaphors of death and dying. It was powerful.
     All through the hymn I flashed to some of the times that I had felt those feelings, that part about, I am tired, I am weak, I am worn, especially most recently in the last 3 years, but they are not the same any more. I am no longer tired or weak or worn maybe a bit on the worn side but not in the sense of "at the river I stand". And it struck me - that is no longer me. Oh how far I have come. Oh sure, life will never be like it was, healthwise. I can't do what I used to do and "I ain't half the man I used to be". And yet it is not a cause for feeling bitter or cheated, although I have courted those inclinations at times. It was, instead a wonderful feeling of being whole, of being healed.
     As I write this I am at MDA for a CT scan and a bone marrow biopsy, usually done every 3 months, now at 6 months. I will also see Dr. Khouri and it has been about 8 weeks since I have seen him and it was usually every 2 to 3 weeks. I have more energy and overall recovering well.  There is much, so very much, for which I am thankful.

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.