The Rally: A nonclinical perspective

When I posted last I fully expected this to be a different post.  The weekend past was grueling with no food intake, completely bed bound, confused and clearly dying.  I spent hours watching, waiting and planning.  On Sunday evening I communicated with our Priest.  He was willing to come then but I preferred that we wait until morning.  During the night, the rally prevailed.  Though weak and aphasic, Bruce rose from the bed to his wheelchair.  I slept soundly thru this as it wasn't med time.  My Husband, however, did not.  He heard noise in the kitchen and rose to find my Brother, armed with a kitchen knife, attacking a plate of saran wrapped Christmas cookies.  Though confused, his intentions were clear. My husband successfully disarmed him, prepared him a plate of cookies and escorted him back to bed.
When our Priest arrived Monday morning, expecting to deliver last rites, my Brother was pirouetting in his wheelchair in the living room.  They spent time together, discussed literary collaborations and prayed.
So the rally I looked for, came.  It appeared in the form of one of his original goals:  food.
It didn't last but it was tremendously entertaining and I had a peek again at my strange and wonderful Brother.
Pain is now the issue.  He does get up in his wheelchair briefly several times a day.  Not really for food or drink now but for the occasional cigarette.  Hospice nurses felt that as his metabolic needs decreased, so did his need for meds and we attempted a 6 hour regimen.   That turns out not to be the case.  Nights are long and painful and we spend them trying to catch up.  I am giving him morphine now, when he asks.  Time increments really don't matter.  He sips water or juice boxes but really still has no measurable intake.  He wanted to go to the bathroom yesterday and we wheeled him in at which point he promptly fell in the toilet. He weighs 114 lbs.
I'll not speculate, even in my mind, about the next post.  I will certainly commit to keeping his readers informed.


Little Sister

Time. It ticks away.  This has seemed fast.  Just early October when we made the trek to New Mexico.  Now the minutes tick by.  The last few days have been ones of steady decline.  I medicate him now, every 4 hours because he is unable to.  He is mostly nonverbal, with occasional words that are garbled.  I medicated him at 9 last night to much the same.  At 1am I was up.  I couldn't wake him.  He was breathing, but shallow.  I sat for a while and watched.  He seemed peaceful.  In my nurses mind, I thought "this is it". I feel asleep and awoke to my alarm for next med time at 0445. He was laying in the bed smiling at me and waved. He sat up and took meds.  In my nurses mind I thought "ok, this isnt it".
At 0845, I woke him. He never opened his eyes but took his meds.  I asked him if he wanted to get up, and there it was, the look.  He opened his eyes and mumbled something. I didn't need the words, I remember the look.  I'm 9, he's 12 and I've invaded his space.  He is busy doing something and I've got questions.  Way too many questions.  The look isn't mean, its actually gentle, but I remember it. "go away, come back later".
The nurse in me said "still his little sister".
I wouldn't have it any other way.


Its his Sister.   For those who wait, we can feel you.  Time has been precious and cruel.  The earth suit is failing and the ability to type and express thoughts currently exceeds his capabilities.  I keep waiting for one of those beautiful "rallies".  One where he is standing at the kitchen counter eating a cinnamon roll with a sparkle in those blue eyes.  He seems fairly comfortable though the physical ravages are obvious.  When he's sleeping, which is a lot, I like to think he soaring through the desert and those mountains in his ultra lite. I picture him safe, healthy and strong in that "bubble".  In the meantime, we are with him.
I'll update here as I can.  I find strength in his readers.

Let's Make a Deal – Bargaining with the Unknown

As the more emotional aspects of my personality continue to exert themselves I notice the bargaining process beginning. Discussions with the blg misty unknowable on how to avoid upcoming events. Today was particularity emotional since I was able to visit with my old undergraduate professor and mentor from the 1980's who I had not seen in about a decade. She was in Chicago for the holidays and made a special trip down to visit. I of course cried like a baby at her embrace and we were able to visit for several hours. A major highlight in my day and one I will not forget (literally take to my grave). I appreciated her visit so much and because of her compassion I made through graduate school with a freshly minted PhD many years ago.

My mother came by in-preparation for a visit by Father Mark who administered communion. This was primarily for her benefit but got me tracking on the bargaining process and reinforced the notion that much of this process is about others and my job is to muddle through the tears as best as I can.
You knew, the why me, not now, I did everything according to the book, don't I get a pass? But no, I don't get a pass and like everyone else walks this road alone but surrounded by friends and family.

At this point I don't i'm not sure how I feel about the traditional death watch and must confess a certain ignorance about the process, so I guess some study is in order. Questions like who should be around
, do the kids participate? How boring is the process? Will there be games? I just don't know at this point and perhaps I can evade the question altogether.

As I speak with others who have traveled this road with others i'm amazed at the detailed personal stories and accumulated wisdom i'm hearing but have yet to find a good distillation, so i'll just keep looking.


A Breast

As I watch certain physiological aspects of my male body change in prepration for shut down I also notice other aspects become hyper accentuated. One particular image will not seem to leave my mind, a typically male response, it is an image of a breast, a right breast belonging to a friend.

I first glimpsed this right Brest back lite by the sunlight through a tee shirt. The warm glow of the late summer afternoon light highlighted in shadow the perfectly rounded summitry of the Brest, taught within the confines of the teeshirt and the image lives on randomly popping in my mind like random bits of floatsom at any opportunity. Although the other physiological responses that usually accompany a magnificent site have eluded me, this vision of grandeur stays with me. The edge of the nipple just peaking out from the white teeshirt in the warm summer afternoon will not soon leave me.

A some what bohemian observation and I hope not offensive.


Expectations versus reality

The idea of  hospice congers up a whole range of ides from "giving up on life" to " transitioning and exiting life in the best manner possible". Excluding tramatic injury where triage protocols take precedent, the slower decline where hospice intervention can be of utility actually applies to all of is as we age.  So it seems that hospice care of some sort is a useful tool for all to be
ware of.  While I can only comment from an N=1, and I have found the first line of defense more than sufficient in pain control.  That is not to say that there are not periods of discomfort which were delt with immediately but I have become aware of the smaller up and downs combined with the steady loss of function of the overall process.  I have tried to graphically represent what I'm experiencing to give some understanding of the process from my perspective.  Lots of ups and downs overlaid on a steady decline of bodily decline.  I have found that chocolate cake does make for for a good intervention and is perhaps related to the 6 gallons a month of chocolate ice cream i  was eating.  i snarfed down a big piece last that passed magically before me last night and found the energy to get this piece written.

So, i leave you tonight with a mouth full of chocolate crumbs and hope everyone sleeps well.

expectations versus reality


Previous Aspects of the Journey

I was recently asked what brought me Rodeo NM, what were the threads of life that came together to weave the tapestry of my life in Portal Rodeo area. After finishing my Phd in Biology I moved tot he southwest in 1987 to start a Post Doc at Arizona State University. As a recreational caver I quickly ended up in the basin and range region of the state to look for and explore the caves in the region. It was during one of these trips I entered the Chiricahua Mountains, though not lots of limestone there are a number of caves that I found entreating. And began visiting the area on a more regular finishing the post doc I was fortunate to land a job with the National Institutes of Health working on the genetics of type II diabetes in Pima Indians. This allowed me to continue my explorations of southeastern Arizona and its' cave systems.

Interrupting this was the development of a brain tumor which eventually put and end to my science career, so I sold off everything and decided to full fill a bucket wish item, learning to fly. Since I could not pass a third class medical I chose to fly ultralights. After mastering ultralight trikes I eventually moved out to a remote airport north of Phoenix and started flying on a regular basis. It was after a number of years I met John MaCafee who was learning to fly trikes that I became aware of his desire to build a cross country loop through Arizona and New Mexico. I did a deal with him and moved down to the airpark in Rodeo. Having access to the valley and surrounding mountain ranges by air was great. The landscape just pulls you in and I began photo documenting the landscape eventually producing a coffee table book. But like all good things there was a dark side to this aviation project which rapidly became apparent. It was more about people and personalities rather than the ideas and concepts of business which lead to some serious mistakes including 3 deaths. It is my belief that a startup should not kill people but this one did. I managed to avoid all the lawsuits by adopting the nom de plume even though I was publishing the Sky Gypsies blog.

McAfee packed it in and sold off all his holdings at auction an left for Belieze where the same thing happened again only this time getting out of third world country proved more difficult for him. 


The Second Coming

A somewhat indelicate subject this morning but one that surprised me. I assumed with the colostomy that the normal route of solid waste excretion would cease, but was I wrong. I suddenly started getting that full feeling in my lower bowel, that morning feeling that is relieved with a good sit and a cup of coffee. In any event, and sans the coffee, my bowels decided to give me gift, the one I had asked for when this all started a good poo the old fashioned way. It even came with the rush of relief that accompanies the activity. I clearly don't understand how they rewired by bowels but any poo is a good poo.

The change in medications is working well even though the time between dosages has decreased requiring me to get up more often. The rest of the day was spent just relaxing. Meeting the priest to plan the funeral today and family arrives tomorrow.



In an attempt at the big question that surrounds this whole issue of dying is - what's next? Every culture has a rich tradition of attempting to answer “what's next”, but the best and most intellectually honest answer I can come up with is – I don't know. Having grown up in the Episcopal church (thanks to my mother, the daughter of a priest) and having worked and lived in churches as a way to cover lodging all through college I have a solid background in Christianity. But as a scientist I'm fully aware of the difference between belief systems and observable testable facts. I can not rule out any notion of “what's next” based on what I can observe and test. While some notable scientists are atheists, any of the possibilities (including atheism) can not discounted and I'm forced into the position of “I don't know”. I learned to say “I don't know” in graduate school. In fact it was during my oral qualifying exams when my pride would not let me say “I don't know” and the examining committee lead me down a garden path with a series of questions that if I had answered “I don't know” would have been alright but instead I tried to answer the questions and was eventually cut off at the knees and made to look foolish because I would not say the simple words “I don't know”. It was a lesson I have never forgotten, I was embarrassed and felt incredibly foolish, but I can see it was a lesson I needed to learn, so while I may believe I rule the world in reality I don't know. Admitting that I don't know something is generally my first step in learning something new. While many are comfortable in their belief systems, this simple admission that the universe is much larger than me holding many unknowns has served me well and I'm OK with I don't know, but I will find out.

With respect to the question I was asked “do you have Jesus” (an event describe in described in a previous post) I was taken aback primarily by the intrusion into my privacy when I'm in pain and uncomfortable by someone I do not know. Both my sister and mother have strong religious beliefs but for my sister it is a matter of living a life that reflects those principles but not talking about them. I guess that comes from a career working in the emergency room. A very pragmatic approach in my opinion.

I thought this topic would be harder to write about, but it doesn't take much verbiage to say “I don't know” and I will leave you with this video sent to me by a friend and biologist from Louisiana which captures the


The Changing of the Meds

Well, it was nice while it lasted but all good things come to and end. Monday after returning from a lawyers visit I received a phone call from the medical house asking to deliver the hospital bed. I said sure and began cleaning stuff out of the bedroom. The supplies guy arrived and began setting up the bed when suddenly the nausea started followed by vomiting. I made to the kitchen sink and was busily puking away while the delivery guy was carrying bed parts into the house passing behind me while I'm busily regurgitating everything I ate that morning. Somewhat awkward for both of us. After 3 bouts of vomiting which occurred after radiating pain in my gut I got back to a recliner and sat down and rested. Being Monday the Hospice nurse was due and I had missed her call. At the same time my brother-n-law contacted my sister at work who also spoke with the Hospice nurse. The hospice nurse arrived and evaluated my condition concluding it was either another (new) bowl obstruction or constipation from the high fiber meals I had eaten the day before perhaps in combination with all the bending over while cleaning. So, consultations with the oncologist and the Hospice medical director. The hospice medical director suggested changing the anti nausea medications and adding some steroids. So I switched haldol, adavan, and compozine. The alternative is an NG tube which I hope to avoid since it further decreases my quality. What amazed me was how quickly I went from good to bad. Fortunately, after several hours I was feeling much better and was able to get up and move around. I hope this does the trick.

I can say that after a night on the mew medications I certainly fell better this morning and slept till almost 10 AM.