Two weeks since transplant and I am still ticking. Not only that but some important numbers are up again today. My hemoglobin dropped to 8.4 (they are not worried). My leukocytes (white blood count) is at 0.8 (up from 0.5), my ANC is 0.3 (up from 0.08) and my platelets increased from 44,000 to 70,000! This means engraftment is happening and things are looking up.
Now they have prescribed some new medication to prevent pneumonia, with those nebulizer treatments to begin on March 16. I slept well last night and did not have to return to the hospital for supportive care this afternoon. These are small victories, but I relish them, each and every one.
Thanks to a visiting friend, Marian gets a break tonight to do a little mall shopping (no, I don’t get the allure) and she deserves a bit of R and R (Respite and Restaurant food).
Just corresponding with a friend...
Earlier today, I received an e-mail from an old friend, who is dealing with multiple medical crises, severe pain, and extreme fatigue. Concerned that family and friends do not understand the agony and frustration, my friend started writing about it and is meeting with mixed success. I wrote the following (edited, of course) to explain why I write the updates and poems. From there, like Topsy, it just grew...
To my dear friend:
First, thank you for sharing with me. It cannot have been easy to tell me the tale of your pain and your suffering. Second, I will not claim to understand what you are going through. I have learned that we all experience pain differently and at vastly different levels of suffering...from nagging ache to searing agony. Bearing it based on our history with pain, tolerance for certain kinds of pain, and the comfort we receive from our family and friends.
I wanted to say all that because, you are absolutely right: No one, not your wife or husband, not your son or daughter, not Mick McKellar can really know your pain -- they don't understand, so they don't know for certain how to feel and how to respond. Marian has the same problem, she doesn't know what to do when (as just happened a few minutes ago) I arched up on my chair crying out for water. The pain was enormous and I bellowed as only I can bellow. (No, the police were not called for fear someone was beating a water buffalo...)
This makes me (and I am certain you, too) want to find a way to communicate all the stuff going on inside, in such a way that they understand. As with you, I don't seek pity, but forbearance. I'm not a nice person to be around when I am actively ill. The frustrations you feel when your medical treatments seems always "one-step-forward, two-steps-back." I discuss these frustrations with Marian, because she feels them almost as acutely as I do.
However, know this: There is very little you can hide from someone you have loved for nearly 40 years. I am not certain (as you suggested) that we actually take out our frustrations on those closest to us, at least not entirely on purpose. I believe that they simply happen to be the dear friends and lovers who are willing to "take the hit" and help you past the anger to get at the real problem. At home, I have a stand-in -- I have a heavy bag hanging in my garage. If I am frustrated enough to strike out--the bag makes a great target. I won't say the frustrations have been severe, but I once hit the bag hard enough to rip it from the beam where it is mounted. Still it is human nature to strike out when suddenly injured. As you said, "sometimes we cannot help it, we are weak sometimes and need to yell, shout scream, stomp our feet, etc."
Writing every day...
You mentioned writing every day as both catharsis and as a method of coming to grips with the enormity of your situation. I do the same.
I hurt. I want to scream. I want to cry like a baby. I want to shout so loud that the entire world feels to their core the fullness of my terror and pain. God gave us a voice so we could shout and scream when necessary. He gave us tears, so we can wash out some of the agony inside. But He also gave us tears so we can show the depth of our joy and as a sign that we share another's joy or sorrow. He gave us voice to sing and add untold layers of feeling to the utterance of inner agony or our soul's ecstasy. Marian's voice touches me like no other because we have shared so much. Occasionally, even I sing when I am in a bad mood or terrified about tomorrow. It is dreadful to behold and unrecordable by any technology known to man. Best reference: Klingon Opera.
Music is communication directly from the spirit and from the soul.
I have learned to sing with my words alone. Poems are often set to music because they contain a music all their own and a talented composer can find the aria in my libretto, the heartbeat in my love poem, the soul of my poetry and, when the magic happens reveal the musical soul of my thoughts. Poetry is painting with words, it is sculpting with phrases, and it is composing true heart music.
So writing about your pain, your agony, your frustrations, and your reasons to celebrate -- like the unbridled joy of a new day after a dark and lonely night, releases the power of your feelings, the force of your intellect, and the love in your soul.
I write because I must write. Perhaps there is a slight edge of panic that was not there prior to my introduction to my mortality, but there is so much I want to share, so much I want to sing out and ring out from my poems, that I am driven to write about myself and help my friends and family to understand both my numb-skull humor and my night terrors.
Why the updates?
I fear that the art of correspondence, the well-thought-out, even epic letter, meant to carry a massive load of information and emotion and the crushing need to be understood, is disappearing in favor of the tweet, the sound byte, the video byte, the IM blurb and the 20-second "luv ya hon" phone message. Imagine if, every time we want to travel from point A to point B, we have to assemble the vehicle from a thousand tiny parts and collect the fuel from a thousand tiny drops. Yet full communication these days requires one to assemble multiple quips and pips and somehow massage that into a message. Little wonder that with so much "communication" going on, so few people seem to "get the message."
I want the record of my journey, the good and the bad, the triumphs and the boneheaded mistakes, to be a complete and coherent record. I want my personal poems to sing what my heart feels. I want my friends to know the totality of my journey from near death back to useful life. And I want them to know I love them for their help.
God bless you all,
Mick