Personal Interactions at the end of Life – Dying is as Much About Them as it is You.

I've been single all my life and have no children I'm aware of. I never got the personal relationship thing down very well so have journeyed through life by myself. As I find myself in a situation where my death will come with family in attendance I realize that my death is as much about them as it is about me. While I have specific goals about my end of life, others around me hold vastly different views and the best way I can acknowledge their viewpoint is to accept (to a certain extent) what they wish to do.

An old friend offered up the idea of cutting edge treatments as a way to prolong things, which brought me back to my original goal of quality versus quantity, I'm more interested in the best quality and not necessarily quantity. I was also asked recently “do you have Jesus” by a well meaning hospital technician. While I suspect some hospital regulations were transgressed with that statement I can understand it in the context in which it occurred (they were looking at images of my enlarged tumor filled liver and it doesn't take a rocket scientist to see the problems) and do not begrudge them, but did find it distressing at the time (I'm working on the post on the spiritual aspects of this journey to put this in context).

Then on to family, I had hoped my end would happen quickly out on the landscape in New Mexico and had even discussed this possibility with my sister but that was not to be the case. Friends knew that if they saw buzzards circling over the estate, they should stop by and check on me (it is only 1 person/square mile out here). So,  I formally asked permission from my brother-in-law to die in his home since I was sort of invading his space when he and my sister came and picked me up in Rodeo. Although I didn't need to ask (permission was implied) I still felt it was the right thing to do since this is an open ended proposition and I'm though I know where it ends I'm not sure how this adventure will progress. I was given formal permission but could see he was uncomfortable with the notion. My brother-in-law would prefer that I chose palliative chemotherapy to extract as much time as possible but has chosen to honor my wishes in this matter which I appreciate, and suggested we go ahead and order a hospital bed from hospice to make the transition to reduced mobility easier. We have had several “man to man” discussions which consist of “you know what I mean?” “yea I know what you mean” and I do. They are typical of males discussing uncomfortable topics one to one. My sister is completely supportive but has admitted this experience is creating a situation where she too is re-evaluating some of her notions including those that are are currently inline with mine With my mother it is hard to tell, she is 82 with some slight dementia (don't tell her I said anything) but I set aside some time with her, just the 2 of us, so she could express any misgivings or thoughts about this path I'm headed down. She expressed little except to concur when I said it was unfair to her to have to bury a child.

I conclude from these interactions that empathy on my part is a useful tool in this process, tying to understand the situation I'm in from the perspective of others. Since we all see the world differently, a topic I've explored through photography, empathy has suddenly become an up close and personal issue in this new journey.

An Uneasy Alliance

We all go through life wearing a meat sack that is our body. It is not us but rather just the outward manifestation, what we wear around as we move through life. This container, vessel, handy carrying case is issued at birth and sticks around until we leave. It operates pretty much independently of our conscience mind pretty much doing its' own thing and generally providing a safe place of refuge. As we grow up we quickly learn many of the operational limitations of our bodies, what it will allow and what it won't allow (like getting drunk as a teenager and puking everywhere), or all the changes associated with puberty, or from a male perspective the daily experience of morning wood. But what happens when things go awry? When we feel that our body betrays us by breaking down. Not the normal aging process that comes with entropy and biological processes but rather an active revolt. The first time I recognized this emotion was with the brain tumor, I initially took it as a personal affront and that our alliance was not so much a partnership but rather just a meeting of overlapping mutual interests. Speaking with my sister and comparing notes, her with leukemia and me with first the brain tumor and now colon cancer we had exactly the same thoughts, our bodies let us down. While we can blame it on genetics, lifestyle, past choices but it all boils down to a parting of the ways between who we are and the meat sack we wander around in. A close friend recently joked when he asked “who did you piss off? First the brain tumor now this”. I don't believe I pissed anyone off it is just chance that I would get to play this game twice.

So what does this have to do with my current adventure? Well several things, first of all the idea of privacy. As a patient, privacy goes out the window. For the professionals to do their jobs they are going to see the meat sack in all its' glorious imperfections. I realized that with the brain tumor, the professionals are there to fix the meat sack not me, so I had to get over the idea of privacy. Second, how we see ourselves. I passed by a full length mirror yesterday and was shocked at what I saw. Although I never carried much weight, 150-155 weight stable, the loss of 25 lbs over the past 8 weeks shows clearly on my body. Thighs are thin and I can almost put my hand completely around my bicep. The fat mass is gone and muscle mass is going. A somewhat discouraging sight, but remember it is not me it is just the bag of flesh that carries me around. Finally, after making a trip to the cancer center at Memorial hospital early yesterday, my sister and I emerged to a waiting area full of patients. My sister observed that as we passed by, everyone looked at me then lowered their head. They were there with their own personal battles and here comes this emaciated old fart who didn't look so good. Not great encouragement for those dealing with similar issues. But I take faith in the fact that although I and my body are parting ways, what you physically see is not me. And I don't feel betrayed by my body and recognize that the parting of the ways is nothing personal, I moving on and my body will be recycled.

The last photograph of me in New Mexico may be found here.  I'm the skinny guy on the right. 

Addendum:

A recent commenter on this post made a great suggestion, instead of meat sack how about "earth suit", which is a much better description of what we walk around in.  So mentally please substitute earth suit for meat sack in the above post.  As I have said before "language is our common currency and some days my wallet is empty", and clearly it was an empty wallet day when writing and editing this post.  Thanks to Timothy for an eminently practical suggestion. 

Quality versus Quantity

A wise man once said the best death is an unexpected death. On the other hand there are advantages to having some time to prepare, allowing all the loose ends we generate throughout our lives to be resolved. But I've run into an obstacle. Having been given some time prepare I have been slowly moving through my list, contacting friends, resolving old issues, and of course doing the paperwork.  When I was admitted to the hospital I made it clear to the colorectal surgeon that I was interested in quality not quantity, he disagreed, saying he wished I would do more. His opinion but not mine. The most telling sign that my position had validity was the diversional colostomy which did not touch the primary tumor except for biopsy. If it was so important to go full bore in treating this thing then why was the tumor left in place. Well it's simple, the tumor had spread to my liver, lungs, spine, and omentum so removing the primary tumor had little benefit and exposed me to a much longer surgical procedure. The next medical professional was the oncologist. Upon our initial meeting I also made it clear that my long term goals were quality not quantity. The 5 year survival stats are less than 10% and the survival curve, with treatment, was not encouraging with 50% survival after 1 year for stage 4 colon cancer. He made a strong argument for palliative chemotherapy. He gave 80% confidence that I would see some improvement and extend my life. What he neglected to mention was that after chemotherapy became ineffective I would still go through the possibly messy end stages. So really it is a choice about time (quantity and not quality). This confusion between quality and quantity in the minds of medical professionals is understandable, they mostly deal with families, with often differing and conflicting needs so quantity could easily be equated with quality in families seeking to extract the absolute maximum amount of time with a loved one. He made the same argument at our first office appointment, saying 59 was to young to die, but since all the possible medical intervention he can muster would not give me an average lifespan or even a median lifespan. When I pointed out that this was essentially a quantity argument he quite looking at me and physically turned to my sister and began addressing her as if she would convince me to follow his plan. But he did not know was that my sister has also walked the cancer path with leukemia. And in typical Thompson fashion she did not tell anyone until she well into chemotherapy. She completely supports my position having been down this road herself. Her only question was “would he (the oncologist) sign the death certificate so the corner would not have to do an autopsy”, to which he replied yes. I told the oncologist that I would consider his arguments again and let him know my decision by the end of the day. After stopping for some Chick-fil-A we headed back to the farm. I ate and then slept for several hours and upon rising from my nap was still comfortable with my decision and called his office and let one of nurses know my decision and asking for a belly line so I can drain acities from my belly. So, the next step is done. It is off to the lawyer tomorrow, then the local Episcopal Priest to get aquainted so the funeral, for the benefit of my mother, will have some substance. 

As  a final observation, I finally had a poo through the new colostomy, but you know it's just not the same feeling of goodness and relief.  A good poo, the old fashioned way, is orders of magnitude more satisfying.

New Adventures in the Journey of Life, in case anyone asks

Life is always full of new adventures, some expected others unexpected and I've started down a new unexpected path.

But first some back story on how this particular journey started. About 6 weeks ago I decided to grill up 5 lbs of chicken I had sitting in the freezer. Many of the chicken breasts were freezer burned but not wanting to waste food I grilled them up anyway. Nice and crispy (burnt) I dug into a couple for dinner. A little hard to cut because the cooked breasts were dry I added some butter and some sauce to add a little liquid to moisten them up. I retired for the evening a short time later but was awakened later that night by a sharp pain just below my sternum. Rubbing the area I noticed a lump. My first thought was “great the dried out over cooked chicken has bound up my gut, this should be fun” and went back to sleep. The next day I was constipated lending credence to the idea my cooking skills were responsible. This continued for several days so I ordered an enema bag to flush things out. I finally began to see some waste movement and the enemas seemed to help (hurrah for Amazon and deliveries to the bootheel of New Mexico). I continued with the enemas on a regular basis and noticed no pain just some discomfort and a full feeling during the day while outside working. The owner had scheduled a visit to help me with some jobs on the estate and with his arrival we got to work finishing the installation of the new pool cover. I also serviced the pool's solar heating system in preparation for winter. But I was spending more and more time in the bathroom. The owners concern grew and he eventually wanted me to get checked out. Through the hard work of Marlenia Baska the P.A. at the Animas clinic which is now open 4 days a week, I was able to get checked out. She sent me to Silver City for an ultrasound. The Gila River Regional Medical is 2 ½ hrs away and the owner graciously postponed his return and carried me up there for the procedure. The only tip off I heard was a question about how much alcohol I drank, to which I responded “I don't drink”. They cut me loose after the ultrasound (which I saw as a positive) and we headed home. A day or so later it was back to the Hidalgo county medical clinic for results. The ultrasound revealed 2 large masses (7 cm in my left lobe and 10 cm in my right lobe) in the liver and was suggestive of metastatic liver cancer. Oops, wasn't expecting that one. Having walked this path before with the brain tumor I knew things were about to get exciting and messy. So now on to the next step, notifications. I let the owner know so we could start planning the transition to make sure guests were taken care of in my absence. Then then family call. I remember making this family call when I was in the hospital with the brain tumor, not the most fun call. My sister immediately said she and her husband would drive out and get me. I immediately responded yes, since I knew a plane flight would be mistake and driving back and to Silver City for treatment would be very difficult, so she and her husband Bob headed cross country to pick me up. After three days out and 3 days back I was ensconced in central Illinois. I hadn't been in central Illinois since 1987 when I finished my PhD at the University of Illinois in
Campaign Urbana. I then went to the emergency room at Springfield Memorial and handed over my test results and was admitted.

Since my symptoms were progressing my immediate goals were to 1. - have a good old fashioned morning poo. You know, after getting up and brushing your teeth and peeing followed by a hot cup of coffee nothing feels better than a morning evacuation of the bowels. 2. - a good meal. I'd not been eating much since it took so long to get stuff through my system and I had a good appetite, I just wanted a tasty meal.

After abdominal, pelvic, and head CAT scans with contrast the next phase was planned. I had a maximum of 3 options, 1. a bowel stint to open things up, 2. tumor resection, and 3. a diversional colostomy with primary tumor left in place. Well my choice was curtain number 1 but a lower GI test showed complete blockage. The extent of the disease showed the primary tumor in the lower colon, complete liver involvement, and evidence of metastases in the spine, lungs and omentum. This pretty much ruled out option 2 since the benefit derived would be minimal, so curtain 3 became the best choice. After a laparoscopic colostomy I was done, about 36 hours after walking in the door to the emergency room. Pain medications ranged from acetaminophen with codeine (helped with incision pain but nothing else) to morphine. I must admit a fondness for morphine, it washed all the pain away and allowed me to get a good nights sleep. I could also now eat and was craving bacon and eggs which I had every morning after the procedure as well as a variety of other treats. Unlike many other hospitals, you order your meals from a menu at your convenience and perhaps the best part of the morphine availability is, at least in my case, no risk of addiction.

So I have a place to finish up and some time to wrap up loose ends which is a good thing. Although I won't be able to get back to the valley, the farm here is not a bad place to be. I'm planning a photo essay of Hoblit Farms so I have something occupy my time and will try and post when I can.

One more sunrise over the Peloncillo Mountains

I wish everyone well and will miss the place terribly, but some new adventures can not be put off.