I have climbed the highest mountains
I have run through the fields
Only to be with you
Only to be with you
But I still haven't found/What I'm looking for/But I still haven't found/What I'm looking for

Songwriters: Clayton Adam / Bono

On  February 6, 2021, I started my trek with Hospice. It seems like so much longer ago but it was only 6 weeks + ago .

Up to this point, I was worrying about how my treatments would fare against the chemo and other trials going forward.  Up to this point, I concerned myself with how to deal with getting through the day. Up to this point I was not sure  how my health was faring also, but I was living by the status of blood tests, alk phos levels, and PSA readings. this my health was faring but... 

From my last clinical trial - which is where I left off prior to my work with Dr. Howard - I was denied access to the trial due to my recent Myocardial Infarctions .  This leaves me with limited options.

Hospice focuses on quality of life versus how close or far I am to finding a cure. Per Dr. Howard and the Cooley Oncology team,  there is little chance for a cure, though I always have the ability to come off of hospice if there is some sort of trial that might help me. I still hold out hope of hopes - but the focus has been on the wedding my dear daughter, Emily - which has been such a blessing. I am so lucky to have been able to be there at the wedding - so grateful to Cooley Dickinson for getting me to this point. But it does change the way one thinks about living every day.  Hospice takes a more holistic approach and is inclusive of spiritual and social concerns which traditional medicine ignores. I find this omission disconcerting and in fact, find the use of talking to someone about my personal/spiritual needs beneficial in ways that I find hard to put into words, unless it is in poetic form.

Doubtful Sky

Here is where the test
Of faith comes padding 
in. Here is where its sleek
Form presses through
The crack in the door.
The faithless, or near
Faithless, the almost 
Faithless  - the doubters –
The deniers – how the 
Steel of faith bends so tightly.
Warped until it's not
Recognizable, nor can be
Given a name. Until it 
Is a web of silk – until it
Flims, until it flasks in a 
Doubtful flash, where once
You knew what to call it -  
Until you knew each other
Where once you held  up
Arms of faith which held 
Up the head of a great, 
Doubtful sky.

Something like that. Where is the space for these types of feelings in readings and monitors, in blood tests and scores that indicate the cancer is being beaten down? I can see why in traditional medicine I would need those scores but when considering more holistic approaches (where do I find joy in my life when it feels like that is being removed from me, what is most important to me now, that I have a limited time left what do these things mean?)

When Chaplain Ben came with his "axe" (guitar) recently and played me some beautiful folk music, he struck a chord and not just a musical one. He was reaching into a poetic world view which has always steered my life. Perhaps, I thought, this was how hospice helped ME.  Hospice, I think, touches mental and spiritual aspects which modern medicine sometimes fails to take into consideration. 

Sarah as Social worker provided a more Holistic approach to dealing with all sorts of issues relating to dealing with not CURING the cancer, but managing how it alters my points of view is something I find re-assuring. These are tools I have never had in my arsenal.

When talking about my cancer tools in traditional medicinal terms, they were always in militaristic terms: Cancer was something to be beaten down, I had "weapons" - but now, my weapons are internal. How will I deal with what crops up in my own head and heart and soul to help me manage my own inadequacies with this disease? Unless I truly do believe that I can defeat this illness, which all my doctors have told me is a long, long shot. Do I believe this? Or am I just in another form of denial about this illness and its aggressive nature?

I don't expect everyone to understand the nature of my decision to choose hospice. Studies indicate that often patients' health gets better if one is focused on palliative care vs. medicinal care. Who knows? I know I have been feeling better and the quality of my life feels better.  Knowing I can go on or off Hospice gives me the kind of flexibility I like if any new treatments come up. I am not completely ignoring medical science after all....

Love you all  

xox

Michael

I have climbed the highest mountains
I have run through the fields
Only to be with you
Only to be with you
But I still haven't found/What I'm looking for/But I still haven't found/What I'm looking for

Songwriters: Clayton Adam / Bono