The Shoe Is On The Other Foot

I spent almost 40 years trying to support people with intellectual, developmental and physical disabilities. Yes, I say tried because the issues are so big and in many cases difficult when it comes to supporting people with disabilities. Systems, bureaucrats, politicians don't make it any easier.

I began my career in the disability field as a direct support worker and ended it as a nonprofit administrator. During that time, large institutions closed and people began to be accommodated in the things we all do, things like shopping, working, and playing. In simpler terms, just being able to live their lives like the rest of us.

While working in this field there was an inordinate amount of time spent talking about what we should call the people with disabilities who we were supporting - clients, participants, consumers and more. Eventually, I figured out after all the talk, that just calling people, people, or by their own name actually made the most sense. That's what you and I would want, isn't it?

Which brings me to the main point of why I'm writing this. I'm now a person with a disability, a progressive and incurable lung disease that every day prevents me from doing the most basic things and will eventually lead to my passing. Each day, something becomes a bit more difficult. Yes the shoe is on the other foot. Now I struggle to get from the front of my house to the back or to a doctor's office or a lab for an appointment or a blood test. All of these are difficult tasks due to my increased shortness of breath. 

I've also learned about how frustrating conversations with service coordinators or chronic care coordinators can be. These conversations are all part of an aspect of my health care and my health insurance. New and different people call to offer me help and assistance but most are unfamiliar with my disease (Pulmonary Fibrosis). I have to spend time educating them and in the end we usually agree there's not much they can do to help. Then they call again the following month and we discuss the same issues again.

It is becoming more and more difficult to get out and about. When I do venture out, I show up with my noisy and funny looking oxygen machine. I have to make sure I have back up electricity or batteries and even a small travel tank of oxygen. Of course its not just the oxygen. There's the tubing, 50' of it in my house, a tangle of trip hazards and 7' sections for travel. All of this has happened with the backdrop of a pandemic which has certainly added to the challenges. Questions arose quickly about vaccines. Initially challenges about where and when they could be gotten and then more questions about side effects relative to special conditions or diseases.

Of course with any rare disease that's life threatening, the issue of medications and prescription drug costs comes up. I currently take a medication that has the potential of stopping the progression of my fibrosis. But here's the challenge. It costs $10,000 per month or $120,000 per year and it comes with some pretty awful side effects. With my insurance I can get that cost down to $8,500 per year. Luckily, with the help of my doctor and a specialty pharmacy affiliated with a university, I was also able to find a foundation that has assisted in covering much of this cost. But there are many situations and medications that people battle over and few people realize how lives depend on those battles.

One of the things that was always frustrating to me when I was working with people with disabilities were  fights you had to wage for pretty basic medical equipment, including mobility equipment. Now I'm faced with the same challenges, being denied a non-invasive ventilator due to, not just expense, but because the insurance provider doesn't understand the equipment or its purpose. Appeals, appeals and more appeals lead to nowhere. The only real answer is finding a provider who will pay for and support the use of the equipment. Of course in our current system of health care, you can't just switch insurance any time you want, you need to wait for the new enrollment period.

I have wonderful care and support provided by my partner and spouse. The hardest part for me is realizing  the things I can't do anymore. Some are pretty basic things, others are more complex. I can't get down to the lake I love but I can see it from up above. Going out to other places or even just for a drive becomes more difficult as time goes on.

I have to fight dwelling on regrets and try to live in the present. In some cases that's easier said than done. I'm experiencing some cognitive and gross motor losses which make writing my memoir and this blog more challenging and I've found that I've had to cut back on those things. That of course is a disappointment but I'm going to keep trying. When someone asks how I'm doing I struggle to find the real answer. 

This is certainly not a call for sympathy or anything else. We all have to deal with challenges, some very real, others perhaps imagined. At this point I'm simply recording a journey that changes day by day. It's my own recognition that the shoe certainly is on the other foot at this point in my life.  I continue to learn through experience and understand more clearly much of the frustration I saw from disability rights groups over the years. Yup, we're 'Not Dead Yet' and we want to be treated fairly and with dignity. Something we all want.

Some Tests Are A Pain But Necessary

Yup, they are, and the one most of us dread and unfortunately sometimes put off is the colonoscopy. I had missed a couple of years until last year when my cancer was found. So I've been having quarterly blood tests and had another (1 year later) colonoscopy a few days ago. All is well. As a matter of fact the results were great and my Dr. & Surgeon said 5 years is fine for the next one. He was happy and so was I.

It's interesting the conversations that take place in the pre-op area as people wait for their turn. People sharing fears, discomfort from the prep or eagerness of sorts to get things done. Sometimes stories of early detection like mine, surgeries and family histories. Bad jokes and references to body parts and bodily functions creep in along with nervous laughs. People of all ages, talking to each other, family members, nurses and Drs. Some people are there for the first time and others, like me, are seasoned participants. As always, great nurses make a world of difference and they always seem to be there.

When its over and people are still a bit woozy, pie-eyed, etc. first timers become more confident and everyone anticipates the results and report from the Dr. In most cases reports are fine. A polyp here, a polyp there, removed and sent off for testing. But there are different results. The ones where the Dr. tells the patient that there's something that really doesn't look good. That was my result last year although it was even more blunt. It was stated pretty confidently that there was a cancerous tumor on my colon. But yesterday was different, for me anyway. My Dr.'s euphoria, thumbs up and big smile was a welcome site. Me? I was still enjoying the drug induced state and so looking forward to a nice lunch.

The real point though is, these little inconveniences are important and necessary. When you consider the potential consequences of doing nothing or putting it off for a little longer, the prep, the conversations, the procedure itself are really not that big a deal. So get it done when its due. It really can save your life.

An Important Anniversary

Yesterday was the one year anniversary of my colon cancer surgery and next week I'm scheduled for a complete review (colonoscopy) of how things are doing. I've been having regular blood tests and Dr. visits throughout the past year and everything has been fine so far.

But anniversaries like this are significant, sometimes scary and yet also a time to celebrate. It was in May of last year that my cancer was discovered and the surgery was scheduled quickly with various tests, pictures and preparations made. I had a good expierience at St. James Mercy Hospital in Hornell, NY. Great doctors and nurses and lots of support from family and friends.

What have I learned and experienced since? Well, the obvious things have been to try to take better care of myself through diet, exercise and moderation in lots of things. I've also spent a lot of time thinking about friends, colleagues and family. Memories have become more significant, relationships more important. I've also tried to inhale life a bit more intensely over the past year and yet I'm feeling the limits of age. I've learned to really respect and honor others who have struggled and fought the battle with cancer.

I lost a good part of the summer last year in various stages of recuperation. I wasn't able to do outside work, get out on the lake, etc. So far I've been making up for it this year and plan on continuing.

Anyway, that's an update and my own reminder of an important anniversary that I remember mostly from a hospital bed in a haze of medicine in early June of 2014.

Cancer Survival, Transitions, Anxiety and Depression

As I sit listening to Irish music on another St. Patrick's Day I realize that is the way many things are measured as a Cancer survivor - another St. Patrick's Day, another this or another that. There is always a gnawing that makes you wonder, is this the last or the contiuonce of many? Now I need to say up front that I certainly don't speak for all Cancer survivors. Perhaps I speak for a few or perhaps just myself but I do think it's important to share these thoughts. It certainly helps me and maybe someone else out there struggling with their own mortality issues.

In the mid 90's I had a malignant tumor removed along with the upper lobe of my right lung. I didn't need or have any radiation or chemotherapy. Last May I was diagnosed with colon Cancer and operated on in June to have the bad part of the colon removed. I've had three month followups since and have been deemed ok, again with no need for radiation or chemotherapy. All great news you would think and so did I. But then there is the transition that occurs with each follow up visit. The gratefulness turns fairly quickly to fear and anxiety. Silly to some I guess but there it is. When everyone thinks you should be happy and celebrating life, you find yourself questioning everything.

Some of this questioning if gone unchecked or without support can and does lead to bouts of depression. Somehow we've figured out how to heal the body, or try to heal the body, without much thought about the mind. Most Cancer survivors find support from other survivors. Their experiences are helpful and there's a shared understanding of the ups and downs of life with Cancer.

This week I have another one of my three month follow ups. It requires a blood test to help find and identify specific markers. My appointment date has been changed three times due to my Dr.'s schedule. Hopefully my lab work will catch up with the schedule. So with an appointment scheduled this month my anxiety started to kick in at full speed about a month ago. An odd toothache, the swelling in my ankle on my trip to Selma, symptoms of a sore throat and real or imagined swollen glands all help to add to my diagnosis that things are bad, real bad. That's how the mind and the body work, at least my mind and body.

Healthcare Providers try hard to deal with all of this but again, their main focus is the body and what's real or what they can find. Survivors deal with both the mind and the body and many times don't know what's right or wrong. In addition there's always the apprehension that you'll be viewed as a hypochondriac or the boy crying wolf and of course none of us can afford that.

I think about others with Cancer during these times too. Those who have been lucky like myself and those not so lucky - young and old, females and males, friends and strangers. I think about their lives, what they've done and hopefully what they'll continue to do. Those we lost are missed.

So I say, thank God for Irish music, Irish stories and another St. Patrick's Day.  On top of that Easter is right around the corner!

My Cancer and Not Cancer Life

I have a feeling that what I say here is something that lots of people have experienced. It's basically about the ups and downs of battling cancer. I used to be bothered by that terminology - battling cancer, a courageous fight, etc. but I've become much more comfortable with the language since I'm in the fight.

My not cancer life is pretty normal, probably much like yours. Getting up in the morning, doing what needs to be done, planning the day, taking on everyday responsibilities and enjoying most of it. I watch the news, some entertainment in the evening and then hit the sack, starting all over the next day. There are great interactions with people along the way, family, friends, colleagues and just people I meet.

My cancer life is very different. It comes with triggers. They're pretty straight forward. A scheduled doctor's visit, a blood test, a bump, a pain, something different in my body that I can sense or feel. I think it makes sense. I think most people will react the same way but it's a struggle, a fight if you will.

Earlier this week I had a six month check up since my surgery for colon cancer this past June. This takes place every three months and it's part of my cancer life. It starts with a blood test a week or two prior to the appointment. There's always apprehension. Sometimes there's outright fear. It ends with the appointment itself and the doctor letting you know all is well relative to blood work and how you seem to be doing. There's a surge of joy and energy and relief. Thank God!

And that was my expierience this past week - blood test, doctor's appointment and a confirmation that everything's ok for another three months. Unless of course I have one of those odd pains or a new bump to contemplate. It is a fight. It is a battle. So if you know someone with cancer or if you hear those terms and feel they're odd or strange, I hope this helps you understand them a little better.

Now back to my not cancer life.

Epidemics and Fear

The recent news and developments related to Ebola have raised lots of issues and fears. Some legitimate and quite a few unfounded. The worst of it all is the continued politicalization of the disease and communications about it. The best advice I've heard is to follow science and not the politics. It's disgraceful how some politicians on both sides are dealing with this issue.

Obviously Ebola is a scary and dangerous disease. That's clear from the death and devastation it's causing for thousands in West Africa. Scare tactics and fear are the worst way to deal with it. Health professionals understand the virus better than all of the politicians. But we do have to understand that fear is a historical method for people to get their way. Fear has been used for centuries to accomplish all kinds of goals - the justification of wars, the treatment of groups of people and so forth.

I've had some expierience with fear - leadership by fear and just plain life expierience with fear. It comes in all shapes and sizes. I've seen people try to lead by fear in both the non-profit and for-profit world and of course in government. It's effective because it helps bring people around to a point of view. The downside is that the people being led many times find out that their being used or misled in terms of facts and truth. Eventually that makes some or all angry and the leader can be defeated or removed. All of that can be and often is a painful process.

But I've had other experiences with fear. I'll share one that is related to some of what we're seeing today. My family lived in Spring Lake, NJ in the late 40's/early 50's. Spring Lake was one of many communities on the Jersey shore that was hit very hard by the polio epidemic of that period. Children all over the country were stricken with flu like symptoms that led to muscle paralysis.  In the worst cases individuals ended up in iron lungs, large tubular canister units that helped that paralyzed person breathe.

My family was hit hard by polio. Out of four children, three ended up with polio. My older brother, my older sister and I all had it. My younger sister didn't contract the disease. No one then or now knows why. I can't really imagine the fear and confusion that my mother and father must have gone through. I was about five years old at the time. What I write about this expierience is a mix of early childhood memories and family storytelling.

The impact of the polio hit us chronologically - my brother, my sister and me. All of us ended up in the hospital separated from each other in various states of paralysis. In my own case my entire left side was paralyzed. Neither my left arm or leg would work properly although there was always some level of control. There were no known cures at the time. We were right on the cusp of the Salk vaccine. There were various treatments, however. One was to place heavy cast type material on the affected body areas. My guess would be to help build resistance and therefore strength to the muscles. The other was exercise developed by a nun, Sister Kenny. I believe the later is the approach that I received. I remember a hand and leg bar set up on pulleys with weights that I would utilize throughout the day to move my affected limbs. There were also continuous doses of penicillin given at various times during the day and night, all in my rear end.

My brother honed his social skills organizing wheelchair races down the hall. My sister was on a different floor. There were iron lungs, wheelchairs, braces, crutches and everything you can imagine for the many children in various states of paralysis. I was fitted for a brace and used it for a bit. It could have been days or weeks. Miraculously all three of us recovered over time with no remnants of the paralysis. I have had some weakness on my left side but that's about it.

The town in effect was under quarantine. The beaches were closed. Municipal pools were closed. Public congregation was discouraged. No one knew where this awful disease was coming from but it was targeting the children of many communities. There was certainly fear. I was too young to understand or even remember the conversations and political discussions that must have taken place. Along the boardwalk there were two or three municipal pools where we had always swam as kids. I never understood why there were pools built right on the ocean but there they were. I remember some talk of the virus being transmitted at the pools. My mother had her own theory. She was convinced we got the virus from flies that had been very prevalent that summer. I'm sure the CDC would appreciate her input and insights today.

The point is, it was a mess and people were fearful. They depended on their doctors and nurses to help them and to provide them with the best information available. But people were scared. Kids were segregated and separated. Families stayed in homes looking for the smallest indication of the illness appearing. I wasn't a part of those conversations but I know they took place in addition to the rumor mills and news stories.

In the end science did win out. People received treatments of various kinds and Salk's vaccine came online. Many people though weren't as lucky as me and their paralysis remained.  Others died. Families struggled. We should learn.

3 Month Check-Up - All Is Well

People who have followed this writer know that in early June I had surgery for diagnosed colon cancer. At the time of my diagnosis I decided I would share my experiences by writing about them, letting people know about the things that people diagnosed with cancer feel, fear and find out as they move along on that journey. I've posted a number of items that you can find here.

Today's post is about my 3 month check up with my surgeon that took place today, Sept. 22nd. But it isn't just about today. As with most other Dr. visits, there is a build up of sorts. A few weeks ago I went for a blood test specifically for a marker that helps the Dr. identify if there is anything going on relative to the cancer that he cut out in June. Also in July I had seen an oncologist and had a good report from him. But there is always apprehension when you get the latest tests and wait to see the Dr. to hear about the results.

In addition, the healing from my surgery has been slow (in my opinion). I still expierience odd pains at and around the incision. I also have done a couple of things that have stretched and/or strained the area. As recently as last week I tripped while stepping over the fence I have around my vegetable garden. The fall caused some ripping and stretching of some of my internal parts and new pain appeared. Also in August I lifted more weight then I should have and felt the results for a few weeks. So I've had some different discomfort and pain going on for awhile. Anyone who has had cancer will understand that pains appearing and disappearing always raise new fears and concerns. The fear is always there and most likely never goes away. This disease is so ornery and insidious.

In the end, my visit today went well. My blood work was fine. No signs of anything odd there. As for the pains, my Dr. spent good time with me explaining the reality of all of the nerves that have been affected by the surgery and getting me to recognize that any trauma to the area effects the ongoing healing. I'm not sure if he realizes how much relief he provided even though I thank him profusely every time he gives me good news. I drove home (about an hour) and crashed on the sofa. I'm sure stress or the relief from it had a lot to do with the nap that ensued.

So now I'm good for another 3 months, another blood test, etc. The cycle will continue and in between I'll probably feel an odd pain here or there but will move on and get things done like preparing for winter in upstate NY.

A Journey - Surviving Cancer

A lot has happened since I had colon surgery about 10 and 1/2 weeks ago. Initial time was spent recovering in the hospital, then at home. Diet challenges and changes have also been part of the recovery. Currently I'm eating pretty normally and enjoying it. I wrote earlier about my visit to an Oncologist who let me know that at least on paper, everything looks fine - nice operation, bad parts removed, good reports, etc. So a determination was made that there was no need for any further treatment at this time.

The other part of recovery is feeling like you can return to normal activities. It's part of feeling better. Along the way I think there's a tendency to overdo it. Sometimes that's ok, as long as your body talks back and tells you to slow down. I've always been pretty active (my opinion) and so I clearly wanted to get back to yard work, house projects, etc. My surgeon warned me that because of my previous abdominal surgeries I had a pretty high chance of a hernia or hernias. With all of that in mind, I held off on a lot of physical activity. More on that later.

The other part of recovery from major surgery is a tiredness and fatique. I've certainly experienced that and rest has been an important part of the process.

Diagnosis, surgery and recovery also present a lot of mental challenges, at least for me. Some of it has to do with the frustration of not doing what you think you should be doing or what you enjoy doing. There's also a lot of second guessing that takes place - am I too tired, should I be doing more, am I really ok, are doctors being honest with me? That by the way is a big one. I've wondered sometimes if there's a great conspiracy going on where everyone tells me I'm fine because they just don't want to give me the really bad news. People say "isn't it great, now you can take some time to read books, fish, start a new hobby". That sounds wonderful but I've found that it's not that easy. I'm not totally sure why that's the case. Some of it may be physical discomfort or a concentration issue along with the natural fatigue. I did read a few good mysteries. I also bought a copy of the US Constitution and Declaration of Independance for review and study. I find myself more interested in history. I upgraded my digital camera and I'm looking for some ways to get better at photography. I've also found more time for music of all kinds.

Now I'm in a new phase of healing I think. I've started to do more physically, but I've also recognized that I need help. I've found a fellow who can help with some of the heavier chores around the house and property. That has been very useful. I've started riding the lawn mower (I had hired that out for about 8 weeks). I believe I pulled an abdominal muscle at some point last week and I'm hoping I didn't instead cause a hernia. Anyway the pain I'm experiencing from that event has me thinking about other pains, maladies and discomfort. I don't think I'm that different from others who face Cancer and the journey we take with it. Every bump, lump, skin discoloration and pain becomes a significant concern. There is an uneasiness and sometimes fear. The mind is always busy connecting thoughts, knowledge and information. Sometimes, what would seem like the simplest conversation to some, connects you back to the reality of your situation and expierience with Cancer.

The reality is though that it is a journey, like most everything else we deal with in life. It's certainly good to have friends and support along the way. I have both and I'm grateful for that.

Health Update

This past week I saw an Oncologist as followup to my colon surgery in early June. I could have seen someone associated with the hospital where I had the surgery but felt it may be important to see someone a bit more independent. In the end I'm not really sure that mattered but it made me feel a little more in control of the situation. I also knew someone who had seen this particular Dr. who thought highly of him. Anyway, I prepared for my meeting with my usual list of questions and concerns. The Dr.'s office had also sent me a pretty extensive new patient questionnaire and had received a complete referral packet from my primary physician including all of the information from my surgery.

This was another hour long trip but in the opposite direction from where my surgery took place. Health care does have it's limits and proximity to patients is one of them and I'm sure it will get even worse. Again, not something you think about much until you need the services.

I had a nice visit with the Dr. He was very engaged, interested in all aspects of my health and knowledgable. He was complimentary of the surgery based on all of the reports and materials he had reviewed. He told me that the surgery and pathology report were really the best outcome one could expect with this type of cancer. He indicated there was a slight chance of the cancer returning over a five year period but said the chances of it not returning were much greater. He is not recommending any Chemotherapy or Radiation at this time. He indicated the importance of regular followups and that was it.

I left the office feeling great and realizing that I am a very lucky and blessed individual. To celebrate I did some yard work. I discovered after about 45 minutes that my arms and legs weren't ready for a total workout. I am going through the classic situation of my head being at a different place then my body in the healing process. So, one step at a time, a little bit at a time and a little better planning in terms of the level of work to be done. Onward.

Healing and Recovery

Well here it is almost 4 weeks out from my surgery and 3 weeks from my hospital release. I'm back on a regular diet or as regular as I can handle at this point. Restrictions on driving have been lifted so I am getting out and about. The reality is though that the recovery is slow or at least slower then I want. Probably true for most patients. We always seem to want to do more, more quickly then we can or should. Anyway I have lots of people who keep reminding me that this was major surgery. I don't really need the reminder but it's good to hear from other people.

Our bodies are certainly resilient. It's amazing what they can go through and what we can put them through. But they do need time to heal and rebound. I find myself getting tired with little exertion. Some of it seems to be just the effort that I have to put into things. So naps have become a welcome part of my recovery. Pain really isn't and hasn't been an issue. It's more of a discomfort or just the knowledge that something isn't right and I should take it easy.

I saw my surgeon earlier this week and staples were removed without incident. By incident I mean everything coming apart. In our normal lives and use of the word, staples hold things together and when you remove them, everything comes apart. Well that doesn't seem to happen with the surgical kind or at least didn't happen to me.

The next phase of this journey is a referral and visit to an Oncologist. I'm in the process of making those arrangements. Have the Dr. chosen and working through the insurance check, referral, etc. Things get complicated every once in awhile but you keep moving with one foot in front of the other.

It's interesting that even with good news from the surgery and pathology report, worries don't go away. That's part of the problem with this disease called Cancer. It sticks with you, plays with your head. You try to shake it, stay positive and so forth but it's always there gnawing at you in the background. At least that's my expierience and I have a feeling I'm not alone. On top of that, everything takes time - research, referrals, permissions, transfer of records - and time seems to be the enemy of a healthy attitude. That's another reason you just need to keep moving forward.

So that's my latest update. I'm slowly going to get back into writing about things that interest me and hopefully you. Things that strike me from the news or from life in general. I'll also continue these updates as things move along.

This Old Body

This old body has been taken for a ride, recently and over the years.
I've been tough on it no doubt.
I've put things in it and rode it hard.
Late or sleepless nights, singin, shoutin, or raisin hell
of some kind.

Lately it's been poked, prodded, pricked.
Cut, stapled, sewn and medicated.
I've had parts taken out, put in, measured,
hooked up, thrown out maybe even pickled.

Everything seems to be workin but the stress and strain
have taken a toll.
This old body carried me lots of places.
It marched, walked, sat down, got beat up
and went to jail more than a few times.

It sang with me, jumped, danced and dazzled
me and others. It met people, touched people
and helped me make friends and loves.
So we've been around the horn together.

I miss some of the youngster in this old body
but enjoy the rest it seems to need.
This old body helps me think and
helps me write things down.

It may not be able to do the things it used to
but this old body still gets me around.
There are still places to see and to go,
people to meet, jobs to be done.

So we're still in this together
this old body and me.
Lookin out for each other and
travelin down that old dusty road.

The Wait, Surgery, Recovery

The Wait
If anyone ever tells you that it's easy to wait and prepare for major surgery, my guess is they're lying or perhaps just fool hearty. A planned surgery is just that, planned. The planning has more to do with other people's schedules and issues rather then your own. In my case recently, there was about a two week period from diagnosis to surgery. The times can be shorter or longer based on many issues. When I was told about my need for surgery, the time seemed just about right. Little did I know. At first, there was much to do and as time went on, way too much. Time began to be my enemy. Now much depends on the seriousness of the procedure but that's part of what occurs during The Wait. Various people review risk factors with you based on pre-operative assessments, etc. The greater the risks become, the more you feel the need to get things done and time moves on. So getting papers in order, making sure estate plans are up to date, organizing the things you've said you were going to organize for years - all of these things begin to weigh heavily, and time moves on. There is a point when you realize you won't get everything done but you've done the best you can. In addition to all of this there is the nagging fear that not just something, but everything will go wrong. All of the risks will come to fruition, all at the same time. Oh well.

And then it comes - the day of reckoning, the sleepless night, the early rise and arrival at the hospital. Everyone caring and wondering if you're doing ok? Sure, I'm great, just waiting for the next phase of this horror show. The Nurses, the Anesthesiologist, the Surgeon, all offering last minute assurances. The Surgeon reminds me again of my respiratory issues and suggests I begin thinking now about deep breaths so it's on my mind when the surgery ends.

Surgery
Rolling into the operating room, everyone trying to make you feel comfortable. Then the friendly and professional Anesthesiologist says, "We've kept you here long enough. Now I'm going to give you something to help you relax." That's it! Next thing I know people are shaking me and saying "Take deep breaths, take deep breaths." Am I here? Where exactly am I? People are talking, telling me where we're going. I'm a bit confused. A short section here but that's all I remember.

Recovery
Before I know it or can realize it, I'm up walking, taking halting steps with the aid of a nurse and an IV monitor. The Dr. arrives while I'm walking and explains that from his perspective, the surgery was a success. Bad section of intestine removed (good riddance) and reattached. No problems, keep breathing, keep walking, Pathology report will be forthcoming.

So the recovery phase begins just like that. My clear liquid diet gets confused with a clear soft diet at one point and I over do it on cream of wheat - um um good! My eyes begin to turn orange or orangish red from jello at every meal. Pain management is pretty much under control with non opiates. Everything seems to be on course until about three days into recovery when fever strikes and a respiratory issue develops. More medications, more breathing exercises and a great emphasis on passing gas and having a bowel movement.

In between all of this many thoughts of life, future and past and how amazing technology and medicine is along with great care by really good people. But depression can easily set in when lying in a hospital bed or roaming halls looking at pictures of founding nuns and nursing class photos from the 1960's on. Especially when it's all punctuated by a wonderful container of jello - orange or red.

Pathology report is back. Tumor hadn't broken through wall of intestine and all of the removed lymph nodes show no signs of trouble. All good news but never out of the woods. On the fifth day, long anticipated bodily functions and release the following day.

At home on my beautiful Seneca, a new recovery process or a new phase begins. A desire for independence that the body can't deliver. Discomfort in many if not every position but the good news is that I've been upgraded to pudding. Ah the joys of life come back slowly.

Status and Update

For those wondering, The Gadfly is back after undergoing surgery last week for the removal of a tumor from his colon. Surgery went well and the pathology report is very positive. Time will tell but for now doing some recuperating on Seneca Lake. Have heard from many old friends and mentors over the past few weeks and have been thinking lots of thoughts, which is always dangerous for a person with a pen or keyboard. More to come............

A Reminder!

"Hello. "

"Hi, is this Mr. Wilson?"

"Yes it is."

 "This is Dr. Amer's (fictitious name) office and I'm just calling to remind you of your procedure next Tuesday."

 I almost fell off the chair laughing and told the pleasant young woman that the last thing I needed was to be reminded of was my procedure on Tuesday. She laughed nervously and continued to remind me that I needed to call the hospital between 11am and 2pm on Monday to find out when my surgery was scheduled the following day.

As a reminder to readers (certainly not me), my procedure is abdominal surgery to remove a good portion of my colon and the malignancy that sits there. Anyway that was toward the end of a day that had involved an appointment with my Anesthesiologist, dropping off paperwork at an attorney's office and stopping at the branch of a local home health care agency to pick up supplies for my CPAP machine. All of these things were related in some way to my surgery. Started traveling at 7:30 am and got home around 1 pm with a stop for a quick bite to eat. Later in the day the call, the reminder.

So my saga continues. I have met wonderful care givers along the way and I've been impressed with the major impact administrative support staff and nurses have in the important relationship with patients and doctors. I've seen this before but it amazes me all the time. Doctors are very busy concentrating on their work, the technical and diagnostic aspects especially, and they're seeing many people sometimes one right after the other. We each want and expect their full attention. The people who help make sure that happens are their support people and RN's and I for one am grateful for those folks and the role they play. It makes a real difference when you think you're in the hands of caring and competent people as you try to figure your way through the process of your own health care.

It reminds me of all of the challenges that we have in life - physical, emotional, financial, educational - and how important it is along the way to give or recieve a hand of assistance along the way. Someone to just take the time to help you through the maze you may be seeing. Good people are out there everyday doing that for people, from the healthcare worker to the grocer or bagger at the grocery store. With all of our differences, political, ethnic and economic status, there are commonalities that just break through and takeover it seems. I like that and I'm paying more attention to it. It's one of the positive aspects of our human nature.

So this weekend I plan to tidy things up and keep busy before that damn procedure. I'm finding that I have an awful lot to do and not enough time to do it. I also go through periods of laziness (don't know another word or what else to call it) where I just get a bit overwhelmed and say the heck with it and sit and contemplate things like this.

I wish I could say I'm not concerned and a bit scared but I am. On the other hand I've also concluded that this is just one more challenge in life and you just have to face it and move forward. It's also been pointed out to me that I'm really on the good side of the continuum of diagnosis and treatment. I could be sitting here undiagnosed and untreated for a long period and then what? So we move on, plugging away. Making sure what needs to get done, gets done or at least identified.

With all of this activity, I hope I don't just plain forget about that procedure on Tuesday morning.

Health, Mortality, Memories, Regrets, Etc.

Earlier this month I got news that I have a malignant tumor on my colon. The identification came from a colonoscopy that was recommended based on some discomfort I'd been having as well as my own history with intestinal issues. I have also had previous encounters with Cancer. In 1995, the upper lobe of my right lung was removed along with a tumor that was also malignant but hadn't spread. Anyway, this thing was caught early, is fairly small and there are no indications of it spreading. I'm scheduled for surgery to cut the nastiness out next week. That's the good news. The bad news is, that however you cut it, information like this, as well as the expierience of pre-op testing, appointments, trying to organize your life and the actual surgery, can make a mess of your mind. I've heard from others and know myself that serious health issues present people with a roller coaster effect in terms of feelings, changes, and where one's head is at.

Our own mortality is something that many of us don't want to ever face and sometimes we don't have to. Accidents happen, people aren't informed well, or illness just strikes quickly. But when you're left to contemplate how things will go or what your chances are, many tricks get played on you and the people who care about you. I've decided to write about this for a very selfish reason - It helps. Putting some thoughts down helps me and perhaps some others who are out there, now or later, struggling with some of the same issues.

This comes so close to the loss of my friend Matt (written about earlier in Memories of Matt) that it makes me jerk and sputter a bit. On the other hand, he was an inspiration to talk to and see in his final days and weeks. In many ways a sign of strength and hope.

I'm going to be 70 in mid June and I still haven't figured out how this all works. You know - the world, life, death, hereafter, supreme beings, heaven and hell, the whole ball of wax. It all continues to be a mystery to me. I have figured out good and evil as best I can. Justice and injustice are also pretty clear to me. But there's lots I don't understand and I find myself spending more and more time trying to understand things that I'll probably never comprehend. Things like why different people are born with different privileges, choices and opportunities? Why are some lives short and other's long? On and on really.

I also have my memories and I'm flooded with them at times. Memories of people, places, things, events and incidents both good and bad. I'm lucky because most of my memories are truly good. Maybe we make sure that happens along the way. Who knows? Memories are built upon everyday. This past weekend I built more with my 2 1/2 year old granddaughter, her father (my son) and his wife. Wonderful, even if an exhausting, time. Riding on Seneca Lake in grandpa's boat, eating good food and building a history with each other. Lifting her high above my shoulders on the count of three and hearing her say "Again".

I have memories of another life and time with my own parents and siblings and of course times of struggle during the 60's and "the movement". Fighting to bring about change in a difficult time. Contentious times they were. Then there are all of those years, working in one place, working with people I really cared about and still do. Memories carry us through so many hard times and personal storms and mine, even the stormy times, are great ones that I really cherish.

There are people who minimize regrets and say that you shouldn't dwell on them. Well maybe not, but having them is different than dwelling on them I guess. I also think it's important to know what they are and if you have the opportunity, to correct what you can. My regrets are many and perhaps shared by others like myself. The biggest regret I have is the time that I didn't spend with the people I love, my boys particularly but also my siblings. I also regret the things I didn't do relative to changing things that could have or should have been changed in the world. There are times when I didn't speak up loudly enough when I saw the wrong things happening. When people in power abused it or just regular folks did stupid things. Not following my musical instincts. Not writing more and sooner. I regret my own failure at non-violence in words and actions. I regret not reconnecting with people or hurting people along the way. I truly regret not taking the time that's needed to smell roses.

There are many more but that will do for starters and will keep me busy as I try to reduce those regrets as I move forward. There are life lessons here. They aren't new or earth shattering. If anything they are simply reminders. Life is short. Do good work. Things happen that you can't and don't control. Enjoy everything and live life to it's fullest. Forgive and don't judge. Most importantly, keep going and keep trying to figure it all out. It's a challenge.

Those are the things I'm going to do.

Follow Up To My Encounter With Tick

Just got the results of my latest blood test and another negative report relative to Lyme Disease. That's the good news. I still believe I had Lyme in my system in early November but between catching things early and the 21 day course of antibiotics it was knocked out. Early detection and action is key as well as preventive measures. I've heard from and about many who have not been so lucky. This disease is debilitating and a struggle for many. Be aware and take action when necessary.

My Encounter With A Tick Of The Bad Kind

The first thing you need to understand is that I'm a dog person. Pretty much always have been. Right now I have two friendly and happy canines. One is an old (going on 17) Beagle and the other is an energetic clown of a Brittany. I've always leashed my dogs. This has more to do with my inability to train any them to stay in an area or to come when called than anything else. The Brittany however likes to and needs to run, so I've got one of those retractable leads that allows him to do his thing as we take our regular walks. His 'thing' is hilarious to watch and be a part of. He winds himself up and runs at full speed back and forth. At some point in the process he begins to spin and tumble, doing actual summersaults close by. There is always a point where he wraps himself in a ball and comes at me at full speed and crashes against my legs. More than once he's actually knocked me off balance. His intention isn't to hurt but to involve me in his play. It's a little bit like bowling but I'm the only pin. At night, he finds a cozy spot next to me on my (his) bed. And so it goes.

Both dogs are medicated for tick prevention and control and I've never really seen ticks on them. All of this is background to a story about my recent encounter with a tick and potential exposure to Lyme Disease.

In late October I decided to attend a conference and meeting in Albany, NY. I drove up, got a room at a hotel and attended a number of meetings at the conference that was held at a different hotel. Late in the evening, after dinner, I returned to my hotel room. It was in fact Halloween. As I took off my shirt I happened to be standing in front of a mirror. I noticed something black and red on my left bicep. As I looked more closely I could see something that looked a bit like a mole or flesh in the center of a very hard red spot with a circle around it. In the back of my mind I was pretty sure what this was but figured someone should check it out. Now that I noticed it, I also felt pain in my arm and some throbbing.

I worked my way to the front desk encountering all sorts of costumes and characters along the way. I asked the young clerk with makeup all over his face where the nearest hospital was. He wrote down the address for Albany Medical Center. I got to my car, put the address in my GPS and was off. Driving through downtown Albany I noticed an increase in the throbbing and a pretty serious pain going up my arm. I was also feeling flushed. Arriving at the Albany Medical Center finally came but now what. The GPS got me to the physical address but how do I find my way around? Turns out there was lots of construction and pretty confusing signage. After my third drive around the facility, through various restricted parking areas, I finally parked the car and walked to what seemed to be the main entrance with a sign for the Emergency Room.  The main entrance was locked (it was close to midnight at this point). I asked some newly arriving employees where the emergency room entrance was and they pointed the way. A nice lady in green with sparkley tentacles on her head took me through the admissions process. A nurse took my vitals and was very concerned about my now sky rocketing blood pressure. She indicated they needed to find me a bed. I explained as calmly as possible why I was there and why after circling the hospital three times and parking my car in a restricted parking area my blood pressure was probably high.

I ended up being seen by two emergency room physicians who confirmed that a tick was embedded in my arm. They were very concerned about the appearance of the area and believed it was probably an indication of Lyme, indicating that there was a great deal of it in the area. After removal of the tick I was given an antibiotic and a prescription for a 21 day course of doxycycline . The doctors indicated that they believed the tick was found soon enough and that the antibiotic would take care of the potential infection with Lyme. They did indicate that the antibiotic came with its own issues. I was instructed to get a blood test in a week or two and to see my local health care provider. It was well past 1am at this point and my next quest was to find a 24hr pharmacy. I found a CVS and filled the prescription, got a few hours of sleep, went to some meetings that morning and headed back home with symptoms from either the antibiotic, Lyme Disease as well as lack of sleep kicking in.

Over the next few months I've learned a lot about Lyme Disease. It seems my area of the Finger Lakes is expieriencing something of an epidemic. I've also learned that different doctors and emergency rooms are treating people differently relative to doses and types of antibiotics. I've followed stories of serious cardiac symptoms and issues. All of this has convinced me that I need to continue to educate myself and that people in general do need more information and discussion about Lyme Disease.

I've had one blood test that was negative and will receive the results of another within the next week or so. Turns out things change with this disease and sometimes there are false negatives so things do have to be monitored. I certainly did expierience symptoms of fatigue and flu over the course of Nov. and Dec. There was joint soreness as well. I've also encountered and spoken to more and more people impacted by Lyme.

In the meantime the dogs are well and healthy. They and I get checked for ticks much more regularly even in this cold weather. I've almost convinced myself that the tick that got me was from Albany, in one of the hotels I visited. Maybe, maybe not. All I know is that we're much more careful in this house.