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.