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.

Spirituality

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.

Transitions and other Little Picture Stuff

It was a week of transitions, some positive and some not so positive. First off I've become more emotional with uncontrolled outbursts of crying and sobbing. It started with the Hospice nurses visit where I totally lost it. This behavior has continued and culminated today with a breakdown on the phone while talking to the manager of the Storage facility where I keep some furniture from my old home in Phoenix. I ended up explaining why I was behaving in an odd manner. I'm uncomfortable losing it in front of compete strangers while trying to get some business done. But we struggled through our conversation and finished off our business. This suggests that my ability to detach from my situation is failing and that I'm moving into the next stage of this process.

Next on the list is eating, my appetite is failing. Living in the southwest for 30 years has taught me that hydration is very important so water intake is not a problem but food is another story. My desire for food is declining and currently I've not eaten in a couple of days. I try to get some ensure down but even that tastes off. This decrease in appetite parallels the increase in nausea and vomiting which started this week. Several mornings of vomiting has left me somewhat weaker, but another rally should help with the food issue combined with a more regimented approach to the anti-nausea drugs.

On a positive note, the laproscopic incision in my navel finally closed and I'm no longer leaking fluid everywhere. I've been taping feminine bladder control pads over the site and using puppy pads to absorb the liquid, but was changing them several times a day. As my energy levels decreased it was often easier to sit in wet nappies rather than change them, but I'm dry all the time now which is much better. Now that it has closed I've noticed urinary volume has increased and conclude that absorption of liquids in my gut, from the VP shunt and tumor weeping, still functions which is encouraging. I will just have to watch my gut and make sure the fluid build up does not become excessive.`

In addition, I'm no longer taking any hydrocodone and have moved to only morphine for pain in combination with a strict regime of anti-nausea medications for the vomiting and nausea. In fact this transition has resulted in a rally and I feel much better today. The lesson I learned was listen to the Hospice nurse when she suggests stopping the hydrocodone and take only morphine, do it. Trying to use up the remaining hydrocodone was a waste of time. It was failing to control the pain so I should have discarded it. I also noticed that Hospice nurses operate differently from nurses in a medical setting. They are more attuned to the patient and bring a more holistic approach to their care whereas in a medical setting it is all about the earth suit and the “who I am” is not relevant to their job. As a result Hospice nurses make suggestions based on their their training and experience (they have walked this road with others many times). So I'm learning to heed their advice and glad my brother-in-law made the suggestion that a hospital bed was needed. The Hospice nurse got right on it and the next day I received a call from home health medical services saying the bed would be delivered Monday.

The Little and Big Pictures

In my photography I have always composed photographs that were “little picture”, “medium picture” or “big picture” images. That is to say up close images of landscapes like individual images of trees, plants, and animals or medium pictures of canyons and rock formations and finally “big picture” views of the mountains and landscapes. I must admit a fondness for “big picture” views and enjoy creating multi-image panoramas, either low level aerial panoramas or ground based images. I even figured out how to use my aircraft to create a nodal point for making large aerial panoramas and always liked to obscure scale clues so the viewer would have to create their own interpretation of the scene.

Cities from space, a low level aerial "little picture" in false color.

I notice that as I progress down this path that my days become a mixture of little, medium, and big picture views of life as well. But the distinction now is that I spend much more time on the little picture aspects of life. Such as remembering to take my medications, remembering to eat, and other mundane activities that comprise life, plus pain management. Part of it seems to be the amount of time it takes to get anything done, any little activity that would normally occupy a few minutes now takes an hour and afterwards I'm pretty well spent and need a nap. Another aspect is the frustration associated with the amount of time I must devote to these activities. It is a battle between the realization that my time is limited and spending lots of time on these mundane activities detracts from my achieving other goals. This is one reason for the blog posts, they help me focus on “big picture” aspects of life and keeps me from falling into a trap where I'm focused only on the “little picture”.

A "big picture" view of the eastern flank of the Chiricahua mountains.

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.

1984, but not as we Expected

Scrolling through Facebook on my phone this morning I can across another article about death. I've been seeing articles about death popping up on my news feed with a seemingly increasing regularity since I started posting blog entries from Blogging From the Boot Heel about cancer and death. At first I shrugged it off and chalked it up to random coincidence, or being sensitive to the topic since I'm on that road myself. Then I realized that there is another possibility, Facebook's' algorithm that analyzes my postings, comments, clicks, etc. has picked up on the death and dying issue and is reflecting that issue in suggested posts it presents me.

I should have realized that companies are looking at my online activities and while the result is kinda creepy, I should have known that some computer algorithm would pick up on the key words death and dying, stage IV colon cancer, medical decision making, etc. and start to incorporate that information into their profiles on me. I have tried to ensure some semblance of anonymity by the use of a nom de plume, carefully watching the sorts of material I post, and generally behaving in a manner consistent with what my mother taught me growing up. You know, the golden rule and if you can't say something nice don't say anything at all, things like that. I can say that this approach was successful in keeping me out of 2 lawsuits associated with the Sky Gypsies that sued everyone associated with that project except me when all the while I was running the Sky Gypsies blog.

I should say the article in question by VICE magazine was about an article in a British medical journal on the best ways to die and included cancer as a top ranking way to go. While I agree the reasoning in the article, so far, it is still amazing how much companies can figure out about you based solely on your online behavior. This is not a call to abandon Facebook or get all upset about companies desires to sell you things and understand your personal preferences in a way to do it better, but now that I have an idea how much they know I'm tempted to see how much I can skew their results, garbage in garbage out, so I'm including a tag to a topic I would like more information on as a test to see how long it takes to show up on Facebook.

Addendum

He's another one I just found in my time line.

 

The Emotional Roller Coaster Ride

I expected it would start at some point but didn't know when. While I like to consider myself a rational thoughtful human there is an emotional component to my personality and it kicked in today, the emotions were not to be denied. While speaking with the hospice nurse I completely broke down. Lots of tears and uncontrolled sobbing while I was trying to relay information to the nurse. She came over and cradled my head and let me cry (even writing down the experience now leaves me teary eyed). Just that simple act of kindness though makes this transition to hospice worthwhile.  While not avoiding the emotional aspects of my personality I prefer to maintain some control but all the news, decision making, and adaption to a new lifestyle caught up with me and kicked me in the butt. I felt kinda like if I cried enough somehow all of this would magically go away but like everything else on this new adventure I'm along for the ride and have to acknowledge that I'm going to experience a variety of emotions but uncontrolled sobbing is way down on my list of fun. I eventually regained some semblance of control and after our meeting the nurse called the hospice medical director with her observations and recommendations and the liquid morphine prescription was filled that afternoon. Clearly these folks know how to get things done in a timely fashion for which I'm extremely grateful.

I guess I'm in a bargaining phase where wild thoughts come to me uninvited that somehow all this will disappear or it is an incorrect diagnosis, but I've seen the lab results and images myself, I know what is in my gut but it doesn't deter the wild thoughts that pop into my head. I find these thoughts suddenly emerging, unbidden, grasping at any threads of hope somewhat disturbing. Intellectually, I know the outcome but the more primal emotional aspects of my personality refuses to accept the situation. The key for me is to first acknowledge the thoughts but to put them aside and get on with what I was doing. I suspect it is all a control issue and as I've observed, everyone (including myself) believes they rule the world.

I also got the results of the last ultrasound scan (Friday mornings scan looking for ascites fluid in my belly) this afternoon and there is now evidence if disease in my spleen. Since the spleen appeared normal on the first ultrasound as well as the CT scan done in Springfield, it would appear this is moving fairly quickly.  Although I've finally bounced back from surgery (yea my colon started working again) and feel better much of the time, it is still surprising how rapidly things can change, one minute I feel fine and the next not so good.  So I guess I have to balance both the emotional and physical roller coaster from this point onward.

The psychological aspects to this journey are surprising to me and I suspect I will be learning more as I progress along this path.  As a male I do have the y chromosome linked emotion suppressor gene which has functioned quite well so far, but now not so good.  And promise to keep folks updated on what I find as things continue to evolve.

Octillo in bloom

Going Shopping

Everyone likes going shopping on occasion, though I must admit I generally find things online and then target the store where I can find the item, blast in and get it then I'm gone or I'll order it online and have it delivered saving a couple hours of driving.  But this shopping trip required my presence.

I've never done funeral arrangements for anyone, but now I've done it for myself. Sort of odd feeling shopping for the final arrangements for oneself. Since the plan is to transition from the farm at my sisters house I chose the local funeral home in Atlanta Illinois. They are close so it won't be a long drive for the pickup and I'm supporting the local business community. I met with the funeral director who knew I was shopping for cremation services. He went through all the options about services he offered and I settled on a basic package of services including the pickup, obituarys (for family), a stack of death certificates, and of course the cremation. No urn, no service, nothing else since the ashes will end up back in Arizona and New Mexico and a service is planned for the local Episcopal church in Lincoln Il.

During the meeting the director collected a bunch of personal information for the obituary (which suggests I should write my own) and then it was on to fees. The total cost was very reasonable, a little less than $2200.00, for the whole thing, so I began signing paperwork. All the funds are insured and placed in escrow until services are rendered so I'm covered.. The director then said I could write a check and I responded “no way, I'm paying cash”. With a shocked look on his face he looked to my sister who just shrugged and I began counting out bills. I did not realize how flustered I had him when as recounting the cash he fumbled around for change. All he had in his wallet was a 20 dollar bill so I got a 8 dollar discount. I got the impression it was an uncommon event, a pre-payer who used cash, and should make a good story in funeral directors circles. Although in speaking with a friend I found out she also has prepaid all the final expenses for her earth suit once she is gone, so while I learned something new, I'm clearly not the only one who has thought about this aspect of death (what to do with the earth suit).

So another checkoff on my list. I should also say that this journey involves a lot more work than I anticipated especially detail work, especially paperwork. One would think that such a natural process would be easier to navigate.

As an aside, I'm amazed at how I can go from feeling great one moment and like shit the next especially if I've fallen behind on the pain medication.  I'm slowing learning to set the alarm on my phone to keep on schedule with medications, especially at night.  Though I tend to wake up to wake up when the meds are wearing off and I'm learning to keep a dose on the bed stand so I don.t have to get up.