Living Well – Ongoing Adventures in Uncertainty

I’m going to be taking a few days off work this week to catch up with myself and prepare for what is likely to be another inconclusive set of biopsy results. The latest word is that there is ‘not a preponderance of cells leaning one way or the other’ They want a soft tissue specialist, who is away at a conference, to weigh in and give an opinion. My new instructions are to call the neurosurgeon’s NP back on Wednesday. They will call me if they hear something sooner.

I’m pondering this example of disembodied medicine. Some well intentioned scientists, who have never met me, have now been examining, and probably arguing, about samples of my cells for weeks. They have no idea what I look like, how I move, what my current symptoms are or how I feel about them, and yet their findings will have a direct impact on my well being. I’ve heard that some people become pathologists to avoid contact with patients. Until my current experience, I have never thought about how truly strange this set up is- what a profound disconnect is built in to the way medicine is practiced.

It seems to me that relationship is a key component of the healing process and yet the way medicine is currently taught and practiced all sort of barriers are manufactured. to prevent doctors and patients from connecting in a humane way. This crazy set up does harm to doctors , nurses as well as to, us the people who seek a healing relationship with them.

Pathology Report

I have never seen
so many omas,
oma, oma om ahh
oma, oma … oh ma!
un classified neo plasm
this new tissue that
resists an easy name.

I like names, and had
seized upon Shwannoma
my own little Schwammie
tenderly cradling a nerve root
at the base of my spine-
Ok, hugging it too tightly, cutting
off sensation in my foot
afraid to let go –

Half the omas are benign,
the other half mal…
dedifferentiated liposarcoma
hemangiopericytoma
These are not handles I can grasp
’among others’ closes
an open ended sentence.

My monkey mind is on
a hamster wheel.
I want an explanation, damn it;
not uncounted probabilities.
I want a word
with the quantum mechanic
who wrote this report.

Last Wednesday I coaxed my nurse practitioner into letting me read and keep the full biopsy report she had just received. She said “I don’t know how to interpret this”. My new oncologist also said neurology was beyond her. She did say that it looked like metastases had been ruled out, so that is good news. Now, I’m exploring new nooks and crannies of uncertainty. There is something oblong near my S1 nerve root that is now being called an ‘Unclassified spindle cell neoplasm’ The last sentence in the report is ‘There are no definite features of malignancy, however, the possibility of this being a malignant lesion cannot be excluded with certainty.’ I have read this sentence aloud with different intonations trying to figure out how it is weighted. I love good science; its refusal to leap to conclusions and to consider all possibilities, but not when it applies so personally.

I will be meeting with a neurosurgeon Monday afternoon with my list of questions that may or may not have answers. Depending on what he can tell me, I may request an appointment with the pathologist also. This was something  a physician friend suggested that I didn’t even know was possible. I’m going into high information gathering mode even as I question how much information will truly serve me in making wise decisions. Staying in touch with intuition is a challenge when fear elbows its way between us..

When I was first diagnosed with rectal cancer in 2006, I put all my research skills to use. I found much that helped me communicate better with my caregivers and informed my decisions. I also read and heard some things that frightened me deeply and cannot be unlearned. This time I am more careful when doing my own research. I can stop myself from reading the worst case scenario articles and statistics that used to draw me in like black holes.

Preliminary results of the biopsy I had Wednesday look favorable. When a neuroradiologist says she is optimistic, I take it as a very good sign.  My nerve root is most likely sharing its space a critter named schwannoma, a benign tumor of the neural sheath.  While final results and decisions about what to do – which range from watchful waiting to surgery lie ahead of me, for now, I am grateful to be returning to my regular routine with all its small joys and irritations.

I will try to remember the knowing I touched on, during this time, that my life has been a good and complete one even with all the gaps between my intentions and accomplishments.  I have felt this sense of ‘completeness’ now two times in my adult life. The first time was a couple years after my diagnosis of cancer when I was visiting the Temple at Delphi in Greece and was standing in the ancient stadium on top of the hill with my daughter; the second time a few weeks ago, in the midst of overwhelming fear, when I found out a mass had showed on my MRI.

This weekend  we’re flying to LA to visit my parents. I haven’t told them anything yet, I didn’t want to worry them unnecessarily. but as the days of non-disclosure stretched into weeks I became aware of the distance I was creating between us. I’m not sure I would do things differently, but I am more acutely aware of the cost of protecting  them and protecting myself from their fear. It will make me question more closely what I do in the name of ‘protection’. Here’s another question for discussion. How do you handle sharing unfavorable news with those closest to you? I often try to stay upbeat even humorous, try to demonstrate that I will be fine no matter what.  Its much harder to share my fears and vulnerabilities.  In close relationships its easier for me play the role of caretaker. I’m curious to know how others handle these issues.

At the end of last December I had an MRI that showed ‘significant results” The medical consensus is that whatever it is that showed up on the scan has a high probability of being benign but ‘we just don’t know’ So in the next few weeks I will have more tests , more waiting for results. I was pretty shaken up for the first few days and many new symptoms suddenly appeared but after the first night of broken sleep and worry and blurting out my worst fears to a trusted friend, I have been eating and sleeping pretty well. I also feel lucky to have a few close people who really get it that I can confide in.

I’ve asked my intuition what it feels and the response is ” whatever the results, you will be fine.” Thanks a lot intuition, you’re supposed to say ‘benign”. Trying to wrap my head around the notion that even if my worst fears are confirmed I will be ‘fine’ in a broader sense of things is a new notion and still scares me. I have always been of the ‘rage , rage against the dying of the light school of thought’ I’ve paid lip service to acceptance but never practiced it. My superstition has always been that if I accept my mortality it means I’m ready to die and I will die soon. I hope with this scare that will change and I will finally be able to write a will and an advanced directive. Yes, I know I should have done this long ago. I’m like a doctor who smokes.