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

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 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.

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.