So, here I sit in my living room, my recovery continuing, my life now revolves around my medical condition - two trips to the wound care clinic for vac chagnes each week, two changes of my ostomy bag a week. Almost constant worry about some complication or some problem that may develop with my new belly mounted orifice - that will be with me for ever now. Some days are bad, some are good. As things heal, I begin almost to become accustomed to the new 'lifestyle' that being an 'ostomate' - a new word learned through chat groups on the internet - but, I have not returned to work. Another hurdle to be faced. While my employer has been patient and supportive during my surgery and recover, how will this new set of circumstances affect my work? Will they fire me if I have problems? Will they expect more of me than I can offer? Will we be able to compromise on working conditions when I return... All questions I face, hopefully in the next few weeks.I am not sure where this blog will go, but felt the need to examine my new, emerging 'lifestyle', and to reflect on other 'lifestyle' changes that mark our march from birth to death.
I'd like to reflect a bit on the experiences that we share, as human beings in our society and how we never quite know where we will end up or what kind of 'life stlye' we may end up living with.
Most of our lives we share the commonality of experience that, given some variation to family structure, ethnicity, culture etc., which defines us, unites us and allows us to have an understanding of our human condition.
For most of us we think of regular; birth, rolling, sitting, standing, walking, talking, going to school, going on to college, or work, marriage (for some), raising kids (for some), working, retiring, enjoying our golden years and, eventually, a return to the earth. Corny, but it is the cycle of life. There is pretty much no getting around it.
What has become evident to me in my 48 years is that though the end of the journey is the same, "No one here gets out alive." - Jim Morrison. What DOES happen is that the path we take differs widely and THAT is what makes all unique, makes us all interesting, makes us all individual. Nowhere is this more evident than our medical experiences.
Again, looking at our unified experiences, most of us, in the developed world, share similar experiences; innocculations, shots, etc. these stave off the most serious of conditions, yet we seem to still share chicken-pox, ear infections, tonsillitis, sprains, strains, stitches, fractures and breaks. Take a moment to look over your body... you can quickly do a 'timeline-of-medical-experience' just by recalling all the scars, dings, and scuffs that are evident on our bodies.
Beyond these basic shared experiences, there are others of us that share other medical experiences that go well beyond the norm. Hopefully, we are able to avoid things like mumps, measels, mononucleosis, pneumonia, appendicitis, and more serious conditions relating to the heart, or other organs, or even cancer.
Depending on the severity of the ailment, those of us who have been dealt a more challenging medical hand of cards, often relate to other aspects of life much differently than those who are NOT as medically challenged...
As I have mentioned in other posts, we all deal with these things differently, for me, sharing my experience by talking with friends and family - trying to share what I am going through - is my way of processing the myriad of feelings and emotions that are part of dealing with serious health conditions.
I come from a family who HAS experienced a lot of medical issues - many instances of cancer, respiratory problems, challenging child births, hear disease, etc. In the end, not TOO different from many other people I am sure. In my case not one, but two cases of cancer, have taken my life in different directions from what I have had planed. Looking back, these 'lifestyle changes' have added remarkable depth to my life - much of which I would NEVER have had the chance to experience had I NOT been faced with these medical challenges!
Twenty years ago, I was happily working as a photographer and photo lab technician, holding on tightly to several part-time jobs, trying to make my way mark in the field when I was struck with my first bout of cancer. At that time I was 28 and would say that SHOCK was the predominant emotion I was feeling. I mean, I didn't smoke, didn't drink more than others my age, my diet was as consistently 'American' as the next person, yet here I was, facing the 'C' word.
With my wife at my side, we faced things together. The learning curve was steep for me, and that also meant becoming a teacher to others as I dealt with the whole expanding world of medical terminology I had to learn and understand; radiation therapy, surgery, adenocarcinoma, chemotherapy, 5-FU, Leucovorin, Compazine, nausea, diarrhea, weight loss, fatigue.
During the nearly two years I spent in treatment, I suffered ill treatment from one boss, followed by a new, more understanding one, who allowed me to work around my treatment, and it's effect.
Lifestyle changes... man... if you have not been through it personally, or been WITH someone who has, you really don't 'get-it'. But for me, this was life changing. The doctors tole me that after all I would be going through, there would be a 1 in 4 chance of not being able to have children. Since my wife and I had been married for a while, and had considered when to start a family....this seemed like as good a time as any to, try! And, as fate would have it, we made a baby! Part of the comedy of this time was that my wife was pregnant during much of my treatment and we joked who was more sick or more tired, in fact, the humor extended to my care team. They would ask me, when I came in for an appointmen.. "How is Cheryl? How is the baby coming along? Oh.... you are here for YOUR appointment..!"
I could not have gotten through this process without them - my care team, and my wife and growing child. More life changes after the birth of Cameron, our first son.
Dealing with cancer changes your outlook. If you are lucky to survive the treatments and move on, you never know what life will bring your way.
My first move after getting the 'all clear' after my two years of treatment was to look for more work - this was the early 90's mind you -- very much like this decade -- where work is hard to find, and you often take what is available, because you need to. For me, that meant a stretch. I applied and was hired, as - of all things - a manager of an Arabian Horse Ranch! Talk about a life-style change! In less than a few months from the end of my therapy, I had made the jump from news photojournalist to stall cleaning, horse grooming, facility management!!! Looking back, I was blessed with all but the horse-knowledge that this job required - a lot of light carpentry, hard, outdoor labor repairing fences and buildings, working with and repairing small equipment and lots of landscape work... I was fortunate that the man I worked for was patient, yet demanding, willing to educate me on the world of the horse, and in the end, he became as important to me as my father and father in law. There are too many stories to indicate the uniqueness of this relationship, so I may leave that for another post.
Like a long journey on horseback, eventually you get a little saddle sore, and need to hop off the horse and do something else. So, after a few years I left the ranch job, returning to photography and graduate school where another lifestyle change occurred. I now was back in the role of graduate student, photographer for a unique program through the university, still a husband and father - Cameron was now 4 years old. This change put me back in to the working world of photography while I pursued my Masters in Education. This went well until life threw more challenges my way. This time, a series of illnesses, deaths of relatives, a second child on the way, the purchase of our first home, the death of our first 'pet'. Needs change, opportunities come and go and (my least favorite saying) 'new doors open when others close' - for me, that meant my new employment shift into the world of education.
With funding cut for my graduate program I needed work, and soon found myself immersed in the world of education -- I had become a Physical Education teacher, and then quickly after that I was offered a position of Computer Teacher as well. Again, life seems to take over - as this path was surely NOT on my career horizon when I graduated from Ball State.... "necessity is the mother of necessity!" We do what we do, many times, not what we want to do when it comes to work. So, for several years I built my skills as a classroom teacher at several schools - most years splitting my time between 2 or 3 buildings to get to that 'full-time' employment status. Our kids were growing, Cameron was in elementary school, Malcolm (our second son) was a growing toddler who had his own developmental issues that we found ourself dealing with too. Time passed and things stabilized, and life seemed to be settling into a predictable rhythm.
Again, another lifestyle change. Some things we can predict, some we cannot. A new set of circumstances rises, complicated by the untimely death (when is death 'timeley'!) of my father devastated me and during the same time my teaching position evaporated under me and I was cut loose once again, drifting, trying to find a job, yet another pathway to meeting the needs of my family.
You THINK, when you are in the early stages of your 'career' that you can map out exactly where you will be and 25, 30, 35, 40 years of age... But, for me (and I expect most) that is HARDLY the case... For me, my job search lasted for about 3 short months - an uncertain time that was very distressing, until I was on the verge of becoming --- a Railroad Engineer --- I had actually had a second interview for a position the position, when I received an offer for a position as a Technology Director at a local Arts-based school.
Lifestyle change - again. Though this position was continued my work in education, it also allowed me to rediscover my creative energies -- I became the photographer for school events, worked with students in Art, Music, Graphic Design, in addition to my assigned duties as Technology Director. In short, this was shaping up to be my perfect job, and had I been more diligent, I might have been able to stay ahead of the eventual 8-ball of required certifications and been able to continue on -- but life changes!
In so many ways, this job was perfect for me and that perfection lasted for 5 years before coming to a crashing end when it was determined that I no longer had the proper certification to maintain my employment (for MUCH more on this part of the journey see my other blog - www.shockinglyunemployed.blogspot.com).
Lifestyle changes - during my 'hiatus' - isn't that what the rich call it when the don't work for a while? - I rediscovered my love of art. My love of doing custom illustrations, and rediscovered my roots as a artist and realized how much this passion had been held in check - behind everything else for so long that it was almost an epiphany of sorts when I reconnected with my creative side. But, more on that later too.
I suffered through the challenges of the unemployed for nearly 10 months - the ups and downs, the freedom and the frustration, and eventually landed work as an installer of Satellite Dishes -- another path I would not have guessed... To be very brief, this job was a nightmare, and I KNEW I had to find something different and quick, before bad weather set in! After a few months, and with the encouragement of my wife I applied for a job as a security systems installler - again, another job I would never have predicted!
This new position has been very rewarding. Challenging, both in the learning of new information, and skills and a nice balance of indoor and outdoor physical work that I could see myself doing for a long time. I had been progressing nicely, learning the job, becoming more confident in my skills, began being given more responsibilities and enjoying being at a job that offered so many good things and really fit my lifestyle - reduced travel, my office was near my wife's, regular hours, predictable pay, good working conditions and good people to work with and for... Then, in November, I start experiencing a recurrence of old symptoms.
Lifestyle changes - at first I tried to ignore them, they would come and go, but as they got worse I realized that I should get things checked out, and lo and behold, I end up in this Second Battle. Dealing with an entirely new set of changes, new experiences, new fears, and hopes, new things to adapt to.
Lifestyle changes - here is the kicker. Shortly after I return to work I will be facing the second part of this battle... more radiation and chemotherapy to treat what may be left of the cancer in my system. At last report, I was TOLD that the cancer was contained within the colon and did not involve lymph nodes or other organs... but I get the strange feeling that this may not turn out to be entirely true... I don't know why, but I feel that, given everything else I have been through, that the actual treatment phase of this battle cannot be that easy... a few weeks of radiation, a few months of chemo, then just annual check ups... If it IS true, that would be cool... but I am skeptical.
So, this next week will be pivotal. I have appointments with radiation oncology, my regular oncologist, and my regular physician who will determine how the next few months will shape up. I HOPE to get the all clear to return to work, and to get rid of this stupid wound pump which I have to drag along all the time, and move on to what ever my new definition of 'normal lifestyle' will shake out to be!
Keep your fingers crossed.
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