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Meanderings of Pancreatic Cancer; A Dash of Autism

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While preparation for surgery to remove cancer can be unnerving, the fact that a cancer was identified early enough in the game in order that it be removed is welcome. Especially since the cancer in question is pancreatic cancer.

For my seventy-something mom, it was just one of those instances where funky findings from diagnostics for a suspected bladder infection - began a series of events that led to the identification of pancreatic distress. In part, the needful events included Mom's seemingly relentless need to provide complete information to her doctor about how there may actually be identifiable reasons for the high sugar levels detected from the various tests he had ordered. She told her doctor that her gallbladder had been removed years ago; it was diseased and gangrene with complications involved during the removal that required cauterization of the liver. s our American diet too demanding? Do too many carbs and processed sugar contribute to pancreatic distress?

Mom's already absent gallbladder and her sudden onset of troubling sugar levels led to the quick understanding that a growth in her pancreas blocked proper functioning. In February 2011, a procedure at Mayo in Rochester evidenced the pancreatic growth to be in beginning stages and the surrounding tissues still healthy. Mom and I rejoiced, as well as the rest of our family.

I have recently begun to consider with greater frequency that many times, disease involves a very long progression; in that it can take many years for our supremely created bodies to begin to be overwhelmed by the various things that are an insult to it. It is not that this has not always been so - it is just that I never really considered disease progression all that much. With the most current events, Mom and I have since engaged in a lot of discussion about the things that might contribute to the eventual progression from perfect health, to perfect health with a dash of pancreatic cancer. Over the past month, we kept telling every single doctor about how healthy Mom is - and they continue to allude to her perfect health - but for this pesky cancer. Mom and I continue to wonder; i

What follows are some meanderings about: a mom (since she is one of the most interesting people I know), a cancer intervention, and as always when it comes to this writer gal - how it might relate to future understanding of one family's autism experience...

Morning of the surgery: This morning my brother texted along his love and mentioned that he hoped we had gotten some good rest last night. Mom and I came to Rochester, MN early - in preparation for today's procedure; the Whipple. To my brother, I sent the following text, "No sleep. The energy emitted from Mom was too great!" And so it was, at 5:45 am - while crossing the street from the Staybridge to Saint Mary's in order to check in for Mom's best chance at longer term survival - my mom chattered about everything that was on her mind. Her eyes were as big as saucers and her breath sounded of one who was hyperventilating. It is completely scary to check in for a procedure that essentially involves rebuilding one's innards.

Before we even left the hotel room to go to the hospital, my mom took out some heirlooms that she had brought along. She wanted to tell me where some jewelry had come from, and why it was so special. Yesterday on the drive to Rochester, she showed me photos of her when she was just a girl. Just a little over a month ago she had found some old negatives from her youth, and then her husband had found a way to develop the photos!

Friends reunite: Several months ago Mom searched until she was able to locate a friend from her youth, Ann. Ann was in some of the photos that Mom showed me. They have been thick as thieves since they found each other again. At the end of every phone call between the two - I hear my mom utter the words "I love you Annie". And so, I love Annie too. It was a riot to hear the younger year reflections of Mom introducing herself to people as Patsy McGillicutty, the garbage man's daughter; and mom's friend would introduce herself as Gertrude Mellon (money name?). That was the poor and the rich of things way back when. To this day there are still some who think Patsy McGillicutty is my mom's real name!

Ever Float, Never Sink bathing suit: One summer during the McGillicutty period - mom was tired of the fact that she could not join her friends when they would want to swim to a spot across the lake that they frequented. The inability to swim caused her to buy an Ever Float bathing suit, put it on, and then rush to meet her group as they were getting ready for another swim. When the friends saw her in the suit they said something like "Gee Patsy. You look a little different. What is up with that suit". She quickly admitted that she wanted to join them in the water and so she bought a special Ever Float suit. With that - away they all swam, Mom a little behind them. Mom's friends kept encouraging her to catch up by yelling "Come on Patsy Never Sink!"

Thinking of the Ever Float / Never Sink suit reminds me of the fact that my mom still did not swim when I was a teenager. My brother and I would poke great fun at her as she attempted to float on her back. The problem was that she would eventually always sink!

Cheap meals and risque photos!: Mom met Dad at a USO dance in San Diego. Dad actually noticed her because she didn't have much of a neck. He joked about it with a friend, saying how she looked like a banshee rooster. I guess a little after that he must have fallen in love with her. They got married in Nevada. There was an age discrepancy, in that my dad was (and continues to be) a couple years younger than my mom. Mom made sure they got married upon the date frame where there was the least amount of age difference between the two of them. Dad was in the Navy at the time.

As far as daily living for the two who were newly married...Mom said one of their favorite meals involved anything bologna like, and more recently I found out that french toast was the other favorite - with lots of melted butter and sugar. Basically cheap meals were favorite meals. Mom does not know it, but one time I found a photo that Dad must have taken of Mom when they were first together, way back then. The picture might be considered risque by yesterday's standards, but I have to tell you - Mom was awesome looking and the picture was modest enough to be classy! So food wasn't the only topic for the love birds, and thank goodness that picture of mom wasn't taken by a cell phone!

Establishing priorities and surviving motherhood: Early on in the marriage, mom wrecked a car they had...I think it was a convertible. She called dad to let him know she had been in a terrible accident and he immediately asked her how the CAR was...

After Mom gave birth to my brother, she attempted to be a stay at home mom. However, the combination of my brother's high energy and her high energy was a little much - and her doctor advised her that she could either get a job or have a nervous breakdown. She got a job. Between Dad, Granny and Papa - wonderful care was always readily provided to my brother and then to me, when I came along 13 months later.

At some point after I came along and before I started kindergarten, Mom started trying to keep me with her as much as possible instead of looking for daycare for me to attend. I was very sensitive, and Mom suspected I had been mistreated by a daycare provider she had attempted to utilize; in what way, I am not sure - and at this late date it would be a very moot point since I have no recollection of that time in my life. I can easily remember that my Mom was the sun and moon in my life. An incidental for instance of how dependent I was upon her in my earliest years...Since she could not attend ballet lessons with me, I did not take them!

I remember moving from Northern California, to Barstow - back in the late 60's. One U Haul and a car full of cats in the vaguest reaches of my mind. I also know that it didn't matter that we were moving, so long as I had my mommy.

Early exposure to brilliant minds and me: The desert seemed perfect for my mom in a lot of ways. She could be outside doing things on a more constant basis. Gardening was something she really liked to do. Upon our move to the desert, Mom at first stayed home to care for my brother and me. Since we were a little older it was easier because she could meaningfully engage us in participation alongside her; or she go simply tell us to go outside and play. She is brilliant and my dad is brilliant, and so my brother really picked up on the smarts. I was more apt to bask, in somewhat of a parallel fashion, in the brilliance that surrounded me - but I didn't necessarily absorb much of the higher intellect stuff so that it permeated my psyche and turned into actual comprehensive ability! I simply appreciated being a part of all that was my mom, dad, and brother. I have felt myself to be, from the earliest age - a constant and joyful observer and or, spectator. Pretty much lucky to have them all in my life.

The desert remained our home for many years. In many ways we were the idyllic family. Dad worked at the phone company, moving up the ladder so to speak. Mom began a long career with the United Way as the executive director for the area.

Learning by doing and always succeeding: Kind of hard to explain how Mom qualified to be Executive Director of the United Way. Mom grew up in Rhode Island and attended a private school because her mother worked at that school. Mom had a slight speech problem that was intervened upon with some therapy. However, she still has a very distinctive way of talking - and she has passed this unique quality on to myself and my brother. We all have great fun, to this day, poking fun at each other from time to time due to the slightly amiss quality of our speech. It isn't just that there is a New England flavor to the sounds, there is a little more there that I cannot describe to you. Perhaps this is why I have become an obsessive compulsive writer!

The reason I bring up Mom's education is because she was not just good at the United Way stuff, she was (and is) good at so many things. She knows how to serve such a wide variety of functions. Back when one could, she occasionally slightly embellished her qualifications in order to succeed in obtaining gainful employment. Once she got her foot in the door - of any position - she made sure to school herself in order that she would be able to function in the role that her employer needed her to function.

She worked at Hotel Del Coronado back when Dad was in the Navy. She eventually worked her way up to being offered a higher accountant position. She did not take the position because her and Dad had different plans. I am sure when and if she reads this she will remind me what caused her not to take the position.

Unusual suspects!: Mom worked with a prominent attorney in Northern California. I remember her telling me a story of how she got so mad with this particular attorney. She ended up kind of throwing a chair at him, or at least throwing it around in his office. I just don't remember all of that particular story. It might have to do with the following...During the time frame alongside her employment with this attorney, she had been involved in an altercation with a group of law enforcement officers. In that, they were apprehending and / or beating on my dad on the road side, and she felt she needed to stop them - so she got in the officers' faces. The officers had pulled Dad (and Mom) over as they were heading home from a night out. (Nowadays I guess you might say that Mom and Dad were clubbing.)

Both Mom and Dad ended up getting arrested. The officers had Mom in an interrogation room and she wouldn't sign a paper that they needed her to sign, and wouldn't make a statement that they needed her to make - in order to show justification for arresting her and my father. One of the officers ended up causing dental damage when he slapped my mom. Because of the physical injury, the lawyer that Mom worked for wanted my mom to sue. However, she just wanted the officer that hurt her to suffer implications with regard to his job; which he did.

Hard to believe that such a respectful gal could mix it up with law enforcement gone wrong! Mom was and is always full of surprises - always ready for a laugh, or a fight; whichever was required. Countless are the good times and worthy battles that have transpired in my mom's life. When she had suffered her greatest disappointments I always noted the slight re inventions she would embark upon in order to experience continued joy filled living. Many were the times for trying some things that were a little different and out of the ordinary. She even had her own Harley; way before the Hollywood Yahoos made it the in thing to do. She road that thing the full distance from west coast to east. It was one of the best times of her life.

After the surgery: While Mom still slept in the recovery area, her surgeon visited with me. I was told that the tumor was successfully removed along with two nodes. Mom would have to have some treatments afterward in order to knock down cancer cells that might want to cause future trouble. Upon hearing of the need for after treatments I told the doctor that things would have to be explained in a very comprehensive manner to my mother. She does not just take a person's, any persons', word for things. She has to be informed fully. An important thing that was settled between the doctor and myself was that the after treatments that would be utilized for my mom were not the most adverse - as far as overall tolerability.  After meeting with the surgeon I went back to the waiting area and finally folded, for a lack of a better descriptor.

When Mom was rolled in to her semi private room after the surgery, I hardly recognized the person laying there. It is amazing how all the necessary drugs for surgery affect appearance; that and all the tubes attached to said person. It is not like I have been prepared to see my fiery Irish Mom in such a state. Mom seemed perfectly healthy up to the point of the pancreatic cancer. She had not been using any medications for the entirety of her life. I began to ask the nurses if they had been monitoring Mom's blood sugar since it had been going dangerously low at times. At that point, Mom hushed me up and told me that the levels had been constantly monitored. It was reassuring to have my mom tell me to be quiet...that is the Mom I know and love.

However, several days after surgery complications arose - at that, Mom allowed me to have more of a voice. Mom went from being able to eat in the days right after surgery to a concerning debilitation. It even went so far as - we were not sure if Mom would ever be able to eat again. The doctors were even coaching her about living in a nursing home. Mom literally ended up on her knees by her hospital bed telling them she did not belong in a nursing home! And then, as if God Himself had flipped a switched Mom began to eat. 

While I have strong feelings about what caused the complications of nausea and delayed gastric emptying, that should not be considered this writing's emphasis. We have a familial problem of metabolizing medications - all the necessary and not so necessary (for pain, blood thinning, and gastric emptying) medications that were utilized after Mom's surgery. Mom was able to eat and recover fully once those medications were tapered and discontinued. After Mom was home she began to show signs of serious side effects to the medication utilized for gastric emptying that she was sent home with - and so she discontinued it.

I would not have understood these things about our family and response to medication, had it not been for years' long experience with my daughter's refractory response to medications while in the valley of psychosis; a worsening of her autism. During that time we discovered that my daughter had a slow metabolism of the 2D6 enzyme; which is pertinent to many medications that are utilized in the field of medicine, not just anti depressants (as wrongly assumed by many doctors). 

In some future writing I might like to entertain the issue of the pancreas and how its lack of proper function might contribute to autism and psychosis. It just seems like an awfully tall order, even for an obsessive compulsive writer gal (one with lack of formal education!). It is just, in the whole recent experience with my mom I have found a lot of similarities between her and my daughter. To a friend, I wrote the following as my mom had started to take a turn for the better: 

If you had all the time in the world I would describe to you how I have discovered that my mom is the high functioning form of my daughter Sarah. (Similarity shared in this writing would have to do with medication response, but there are other similarities that are not shared.)

I am pretty sure you only have time to read that Grandma is now home and doing very well. Now, if you have time to read on here is a little more.

When I arrived at the hospital last Saturday - in the afternoon - Mom was doing horribly and even threw up a tremendous amount of bile and liquid. However, the next day (Sunday) she was ready to eat.

The next day and for several thereafter, she had me running across the street to the Canadian Honker - after I got permission from the doctors - to get her meals. Her breakfast for that day and every one before she left the hospital consisted of two fried eggs over easy and a slice of toast. She had a milkshake for lunch for that day and every day thereafter...and then she had the Atlantic Cod with a baked potato (where she ate the fish but not the breaded coating) for two days worth of dinners. The last day at the hospital she had an open faced roast beef with gravy and mashed potatoes. Yesterday I took her home and that went really well even though it is a four and a half hour drive.

I do make the correlation that Mom became able to eat due to the absence of nausea - and the absence of that really coincides with when the pain meds and the others meds had either tapered down significantly or had been discontinued. Perhaps it was the combination of the meds and delayed gastric emptying though. Also, when she threw up she got what was making her nauseous, out of her system.

I guess part of Mom's medical history and record is that she has very bad reaction to an anti nausea medication and a pain medication that sounds very much like toradol - but I don't remember the name of it exactly. I had never known that my mom avoided otc pain meds, except for asprin - for the entirety of her life. And that was due to the fact that they caused her heart to race. Additionally, I did not know that the other reason she has avoided pills all of her life was because there was a problem with swallowing them and she felt that she could notice that they were doing bad things in her stomach - I don't know if it was psychological or due to a physical cause - but I would have to guess that it is a little of both with physical as first and psychological as slight; in that one always associates previous experience of being made sick by something and then trying not to repeat being made sick by allowing the exposure again. 

Mom will be back at Mayo in April sometime for other treatments. The current doctors began to tolerate us very well toward the end of Mom's visit :)! I cannot say enough good things about the nurses on that floor. They are outstanding.

I have a coworker whose aunt went through a similar thing with gastric type of surgery. She had surgery and did well for several days after, but then worsened and even started to present with the possibility of organ failure. The doctors did not understand why she was all of a sudden worsening. My coworker and I both wonder if in some cases the pain drugs need to be backed off to lesser dosages after surgery - for the people who worsen in such a way. Similarly, my mom had thrived after surgery and then began to worsen. With my mom I was aware that she might have similar 2D6 issues as Sarah's.

I have written too much already and want to thank you for the help you always provide.


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