Month: July 2017

Wednesday, July 26

It has been just over 2 weeks since I’ve started hospice care and about 12 days since Laurie and I opened our house to visitors to say our final goodbyes. In my last post I tried to comment on how powerful and absolutely wonderful these visits been. They continue to exceed all possible expectations.

The only downside to these visits is that they leave me totally exhausted and fully drained of energy. So, where, have I been? Simple: I’ve been visiting, sleeping or sleeping some more. Physically I continue to watch my body slowly wither away – it is extremely hard to eat and drink with such a blotted abdomen. I still get some exercise, albeit irregular. Our hospice nurse checks in twice a week to tweak my drugs. I’m getting massage and acupuncture once a week and otherwise I try to spend as much time as I possible can with Laurie. She continues to be so very supportive, positive and just plain wonderful!

As my body disintegrates further and further and the reality of my mortality becomes more apparent day by day, it must be hard for you to phantom when I say how lucky I am. The truth is I continue to love life and what it offers each and every day. I continue to adore my friends and family as they come out in droves to support my end game. I am so happy not to get poked and prodded day after day, chasing what I now truly believe to be a non-existent cure for my cancer. I love the fact that this journey has made into a better, more empathetic person.

Happy Trials my friends!

     

Tuesday, July 18

We have opened our doors to all family and friends to say goodbye. The response has been simply overwhelming. My notes on the last few days:

I feel like the luckiest man in the world………..The power of these visits, cards, letters and texts have been so far beyond my ability to describe………….My emotions run profoundly deep…………My heart is gigantic and wide-open……….I sing with joy, despite being emotionally exhausted………We remember, share and set the record straight together……… I’ve had time to get my head around the reality of my mortality, now I watch fondly as my loved ones truly wrap their head around the situation…..….This allows us to be lighter and free ……..Words elude me as, you now become the air I breathe………

A note on future visitor logistics: Folks from out of town, please contact us to arrange a few day visit – we will make time. Local folks, please consider randomly dropping by between 9am and 1pm on Thursday and Friday of this week. If this goes well, we well set similar times for next week.

Thank you one and all you – WE LOVE YOU!

Thursday, July 13

For those family and friends who would like to visit us we welcome you with open arms. I am wearing down physically and it is extremely difficult to plan more than a few hours in advance. That said, we would like to try the following:

– You choose a time to visit, text us an hour or so before and we will let you know if we can make it happen.

– Multiple short visits would be better than singular long ones.

– We are open to any and all topics of discussion, however, please do not ask us: “What can I do for you?” We appreciate the thought, but the reality is you are doing it right now!

– Finally, please spread the word of our situation. We do not want Laurie to have an interaction with friends three months down the line starting with “How is Mike doing?”

Thank you to one and all you – WE LOVE YOU!

Wednesday, July 12

Yesterday, Laurie and I took a huge emotional step on this most incredible journey – I entered HOSPICE CARE here in Eugene.

After our early Sunday morning emergency room visit in Bellingham, we immediately consulted with Dr. Beer’s office. They did an exhaustive review of my case history, in particular, the recent rapid progression of my disease.  Their strong suggestion was to cancel yesterday’s consult with the radiation oncologist and abandon all future chemotherapy infusions!  Instead they offered to assist us setting up hospice care.

The reality is that the metastases in my liver are causing serious havoc and acute liver failure is expected.  Additionally the tumors are now showing up in many other abdomen sites. I am feeling slightly worse day by day. Alas, the new prognosis for my time on this planet is weeks instead of months.

We continue to be grateful for your faithful, perennial support shown us throughout this journey. We are painfully aware of the frustrations of not knowing what to say or how to help.

Laurie and I have experienced a few days home alone of the highest quality – our bond continues to strengthen despite the prognosis. If any of you feel the necessity for a short visit to say our final good byes we are open to receiving family and friends starting on Friday.

I am truly amazed at how quickly things are changing for us!

Monday, July 10

Events continue to unfold rapidly for Laurie and me.  Beer stated that he is out of practical healing options; we visited the cancer specialists at Providence in Portland and Dana Farber in Boston. We did a virtual consult with Dr. Small at UCSF. Physically, I feel worse and worse each day, even to the point where we did an 8-hour emergency room visit yesterday seeking relief from severe abdominal pains and peeing straight up blood.

The results of the consultations verified that I am in pretty bad shape, as my liver is failing. There seems to be only one viable, long shot clinical trial that may help me, which Susan and Manfred are presently running down the details. In the meantime Laurie and I have pressed each doctor for a prognosis.  The sad consensus is that I only have months instead of years of quality life remaining; specifically 3 to 6 months, without treatment. Admittedly, sometimes this even feels optimistic to Laurie and me.

For now, let me say that this seems all too surreal to both of us – not sure what else to say!

Friday, July 7

Normally it is the long-winded, nostalgic Rich who gives the family toast. Recently it has been the young, emotional Orion. As our family reunion draws to an end, I would like to take this honor.

This toast will not be about me but us!

We all know that Mike is sick and getting sicker by the day. Sad but true! There is nothing we can say nor do that will change this reality. I ask that you take time and simply accept this in your heart and make peace with it. This would make Laurie and I both immeasurably happy.

We are not the perfect family, but to me we are the most incredible, giving, caring, blessed and loving family and I would certainly not trade this for anything else in the entire world. Spending quality, intimate time with my family is the absolute best gift I could wish for! May this week be the first in a line for Laurie and I to continue to spend time in any shape or form with all of you!

So I now ask that we raise our glasses in a toast to our beautiful family. You all give us the strength and courage to move through this most difficult time. Salute!