Monthly Archives: December 2013

Y1D148 – Reflections

Today is 22 December 2013, five days after the one year anniversary of my last radiation treatment.  Part of me wanted to make a big deal over this anniversary but mostly I didn’t want to draw attention to it.  Making a big deal feels incompatible with the way I choose to conduct my life and certainly inconsistent with my attitude toward cancer;  stay even, don’t get too excited about the ups or the downs.  I didn’t want the date to just slip away but I didn’t want to call attention to it either.  I was conflicted for weeks leading up to the date.  As the day arrived I debated with myself on what to do.  In the end, the day came and went with nary a peep.

The weeks leading up to 17 December last year were rough.  I felt terrible nearly all the time.  I was uncomfortable, stressed, incredibly tired, my schedule was a mess and I was in total uncharted territory.  One of the things that kept me centered was the focus on the last day of radiation.  In my mind, I could endure anything if there was an end in sight.  I suspect that is true for a lot of things.  And the opposite would be unbelievably awful; not knowing when a bad thing is going to end.  Think about being held in captivity without knowing why or when you might get out.  Sure being incarcerated is tough, but knowing when you are getting out has a focal point.  Not knowing has to be torture.  I knew when that round of treatment was going to end and I focused on it as a way to get through.

Now here I am exactly one year later with really no end in site.  There is no focal point but rather months and years of the unknown.  Is now the time to celebrate?  Is any time a time to celebrate?  No clear answer for me so the default is to do nothing.  Sure it would have been cool to take a selfie in front of the bell or play pinball at the arcade in West Philly.  Instead, I had lunch with a great friend who is going through his own medical fiasco.  Being there for him was all I needed on that day.  Perhaps I will celebrate another time.  Perhaps not.

I believe I stopped writing because I felt like I was complaining too much.  The complaints seem to run into one another and I had little else to say.  I desperately wanted to have a point-of-view but didn’t.  My status rarely changed and boring isn’t an option.  Many people seemed to be reading this blog and I felt an obligation to them to be interesting.  At least a little interesting.  With little to say, I said nothing.  Nothing is much better than duplication.  That was nearly five months ago as the last post was early August.  Wow, early August.

Noteworthy changes since…

College:  My eldest daughter was accepted to her first choice college.  I am so proud of her and more so every day.  She is blossoming into a wonderful young person; emotionally intelligent, self assured, creative, hard working, loyal and beautiful inside and out.  I suspect she is going to love college and thrive as an adult.

High school:  My youngest daughter made a huge transition from middle to high school.  That transition brought a complete overhaul in friends, activities and attitude toward school.  She amped up her class schedule, signed up for a ton of extra curricular activities and is determined to be a straight A student.  I am impressed with her drive and determination even as I disagree on her grade focus.

Energy:  A funny thing happened in these last few months; gradually my energy level has increased.  I find myself getting into bed tired but not the kind of tired that has me closing my eyes and asleep in 30 seconds as it was most of the year.  I wish I had more energy but the shift is noticeable.

Work:  The pendulum of work has swung from one extreme to the other.  Paying business had picked up steadily in the last five months and in the last two, it has been insane.  I have been working nearly seven days a week and during the week from 6am to 10pm.  It is a grueling schedule but my clients need that kind of attention right now.  My non-paying activities are no less intense so finding time for that has been a challenge.  Nevertheless, the balance is there.

Bread:  I have been working to perfect homemade sourdough bread for many years.  I feel I finally understand the process and have begun to make a pretty good loaf in the past few months.  Reviews are favorable.  Yes, bread baking is worth making the “short list” of notable things, even after a five month hiatus.  Deal with it.

Since it has been so long since I have posted last, I feel the need to fully describe my situation.  Feel free to stop reading as the notable items above may suffice.  Be prepared to be bored from here on out.

Medical

I have had a number of doctor’s visits in the past few months.  None have been noteworthy.  As a cancer patient, boring is great.  My next oncology appointment isn’t until after the new year.  Neither is my next scan.  My dermatologist and I debated whether we should wait 4 or 6 months before the next visit.  I don’t see my surgeon until next year as well.  As of this writing, I am NED (no evidence of disease) and hope to stay that way.

Health

I continue to struggle with my weight, mostly due to digestive distress of an unknown source.  I have had problems with this for years but the problem became particularly acute during radiation last year.  It has improved since then but not by much.  While I have been able to stay above 125 pounds — my minimum weight before feeling ill — I remain perilously close.  One side effect of difficulties keeping calories up is the inability to consistently exercise.  I am convinced the two are linked and I am desperate to stay committed to both eating a full days food and keeping my body moving.  This has been a huge struggle for me and I have lost a good deal of muscle mass.  As you all know, I used to be a ripped beast (laugh) and now I am a skinny runt.  In all fairness, I have always been somewhat of a skinny runt but at least I was strong.  I am no where near as strong as I used to be.  Feeling weak is not a good feeling for me and I endeavor to get back there.

The general aches and pains from my cancer treatment remain relatively unchanged.  My neck still hurts and is still pretty painful to the touch.  I still have the oxymoronic lack of sensitivity from dead nerves and pain from the radiation.  Totally odd.  Much of the hair on my face and back of my neck has returned but not all the way.  I doubt it ever will.  My salivary glands have not returned completely either.  It can be difficult to swallow dry foods.  I can taste but who knows if it is the same as before.

In short, nothing much has changed.  While it would be great to feel “back to normal”, I no longer remember what that is.  This is my new normal (I despise that turn of phrase by the way) and I hope I will continue to enjoy this level for many years to come.  I feel truly lucky to be only as compromised as I am when I consider the horrific state many other cancer patients must endure.

Mental State

Having a cancer diagnosis sticks with you.  It is your shadow, present even when there is no light.  Having a cancer diagnosis commands attention all day, every day.  Vigilance is required to remain optimistic, decide whether an ache is an ache or a tumor, to not worry about hospice and to be thankful that it could be a lot worse.  The thought that the cancer could be spreading throughout my body at this very moment is frightful but in many ways irrelevant.  Life should always be experienced in the moment so having cancer shouldn’t change that.  My father talks about not living life in triplicate (reliving the past, worrying about the future are the “extra” 2 lives).  I am not angry or mournful of my situation.  I do not dread the future.  I love being alive and won’t let cancer bring me down.  That said, compartmentalization takes energy, vigilance and competes with all the goodness that is not cancer.  For those of you who do not have a serious disease hanging over you, think of me and carpe diem.

Professional

As stated earlier, my paying work has picked up quite a bit.  So much so that I am crazy busy.  While I have multiple clients as always, one commands my time.  Things are so intense with that client I feel guilty going to sleep because there is so much work to be done.  Not only is the work load intense, the work itself is grueling as it requires deep thought, concentration and an acute attention to detail.  I feel successful but it has perilous at times.

I have been thinking a lot about the lack of tools for individuals with serious illnesses.  One of the first things I did was look for a personal health record (PHR) system that would support my situation.  After multiple attempts at research I realized that there was no comprehensive solution available.  Sitting in oncology waiting rooms I started noticing people carrying around notebooks with their medical records in them.  I never actually saw what was inside but I could easily imagine what people needed to keep with them at all times.  During my spare time I (and some excellent business partners) began to envision what a patient-centric solution set might look like.  I am happy to report that not only is it clear what needs to be done, the team has begun taking important steps toward making this germ of an idea a reality.  Stay tuned.

I am not quite sure I am back in the groove of writing but writing this entry has been fun.  Be well and enjoy the end of the year festivities.