Day 179 — A Visit

Received a surprise call from my son yesterday morning.  He was in DC on business, but with no meetings over the weekend.  “Can I come up?”  He asked.  “Sure!”  I said.

So, for hours last night we caught up on his job, his aspirations, his ideas.  This will be only the third time we have been able to see each other in a number of years given his travels around the world.  It was a good evening.

Day 7 of my shots.  While he sleeps, I am at Panera Bread writing this morning’s commentary, waiting for my 8:50 AM appointment.  By the 7th day, I am getting tired of this.  The belly is sore, bruised red, and very sensitive to surprise movements.  A few days must pass before normality returns.  However, my blood counts are so good, we are going to wait 5 weeks before the next round.

Switching from extreme worry to what’s next is still a struggle.  I do not expect answers to arrive overnight.  Nevertheless, chatting with Will about his job was a good step.  His career has followed a path in the same area that I teach.  We have a unique conversation between father and son.  We understand each other.  His global travels have not been easy, and at times lonely.  I admire what he has accomplished given his challenges.

To be continued…

Day 178 —
And on the 6th Day

There was spillage.  No worries, but the first needle leaked half the medicine out rather than enter underneath my skin.

My nurse (who has been fantastic as I have lived through these 6 months) was calm and simultaneously, pissed.  The medicine is not poison, but instead, gene therapy so there was no danger to me, but this was the second faulty needle this week.  She had trouble attaching medicine to needle on Wednesday and had to substitute another needle.

Better than an overdose, certainly.  However, it means that I did not get a full dose today.  I suspect some patients would be angry.  I have grown to trust the crew at LVHN — Muhlenberg.  They work hard under stressful conditions to always get procedures right.  This was an equipment fault.  I know my nurse was concerned for my worry about exposure to the skin, and assured me all was well.  She washed the excess medicine off my belly, and I left.

Obviously, I will watch the spot over the next few days to see if there is any rawness that attacks the outer layer of skin.  If anything is to happen, it would occur by tomorrow when I receive my 7th set of shots of the week.

Meanwhile, my readers will be pleased, I am sure, to learn that my blood numbers approach normality!!!!!  Even the whites/neutrophils are finally responding to treatment.  I ran 1.25 miles yesterday at the Parkway, which is a new milestone, given I have to traverse hills instead of just running on the flat of Muhlenberg College’s track, which by the way was closed yesterday!  That was disappointing because I was aiming for 1.5 miles.

As an editorial comment, it is sad that the only two running tracks in the city (Crum Stadium and Muhlenberg’s) are often both closed to the public.  A soft running track is important for older individuals who still like to run, but enjoy a softer surface.

Guess, I’ll have to work hard to get my legs back into shape for hills!

To be continued…

Day 177 —
The Fifth Day

Number 5 on the shot parade.  This week the side effects have been more pronounced, both with nausea and fatigued, but I wonder if that is because I notice it more.  Why?  Well, I have been feeling much better in between shots.  Blood counts are rising.  So, I would suspect that I would notice if anything was “off.”

I received some nice compliments for yesterday’s post about what I learned in this trial.  Thank you to all.  I do recognize that my writing has been personal and exposed.  I know that writing publicly helped me to cope better than if I just kept a personal diary.  The number of readers never grew large, but I appreciate those who regularly came back to see what I would have to say and to encourage me to tell my story.

The sun is out.  Warmth will return.  I hope that my body has adjusted to this round of shots.  If yes, I will get out on the track today for the first time in a week.  I miss not being able to run the last week or so owing to travel and the side effects.

I have a distance goal of 1.5 miles.  I’ll keep readers posted.

To be continued…

Day 176 — Debriefing

As my blood counts improve, I find that the focus on battling the illness shifts and actually declines.  I have less to say, or better, I have different issues to consider.  Finding new focus is a struggle, one which I wish to resolve.

What did I learn?

  • Being positive is not enough, because frankly a life-threatening disease sucks.
  • I had to admit that I was sick and to not lie to myself
  • I had to be optimistic and remember that I pride myself on not quitting
  • That just still being in the game is good enough
  • I had to face the treatments and accept the side effects
  • I had to be open with my friends, but not lean on them too much
  • It is a lonely experience, still
  • It’s ok not to think of the past or the future.  Just live.
  • I did want to just hide from time to time
  • I did need people to surround me from time to time
  • I did cry
  • Therapy and meditation is a must
  • Writing helps
  • I won’t have an answer for what’s next right away
  • It’s ok to not know what to write each day until I sit down to do so.

I probably learned much more.  Those lessons will surface.  I am confident of that.

To be continued…

Day 175 — Some Days

The sun is out.  The air is cool.  A nice day to drive over to the hospital and receive set of shots #3.  That’s ok.  Today is just one of the those days to complete chores, stay upbeat, and get summer courses underway.

Might this mean just something normal?  As Day 180 approaches, maybe that is all that I really want — a return to normality.

To be continued…

Day 174 —
Idealism and Fairness

When does idealism finally leave our soul?

When do we truly realize that the world, indeed, is unfair?

Did it take me growing old?

I continue to hear and see practices that are incredibly unjust, where power is exploited and selfishness reigns.  Is it enough to just keep fighting and do the right thing for the greater and common good?  Or is giving up and letting the powerful rule the easy way out, even when people are hurt.  It is a struggle to see the wreckage over and over again.  One can be loyal, try to have the voice of disagreement, or simply exit.  Loyalty is the safest.  Having voice is noble.  Exiting is often the saddest.

Today’s election is a case in point.  Investment in buildings can be great, wonderful.  Nevertheless, over the last 5 years, powerful developers and our municipal government have placed the development of buildings in front of the development of people.  Our mayor and his political partners scheme  for increased power that serve their narrow purposes.  The process of public policy is biased toward exclusivity, rather than inclusiveness.  Those with money and resources are served first, with scraps leftover for the rest.

Little has been accomplished to encourage a broad, collaborative community.

Voters can confront such usurpation of control in the election primary by not voting for the mayor’s PAC.  We will see how power is shared at the end of the day.

But unfairness lurks everywhere, and I know it is difficult to counter.

One can only hope that justice prevails.

To be continued…

Day 173 —
Of PACs and Power

I am inundated by the local PAC’s RoboCalls and 8×10 Color Glossy political mailings. Too much money is being spent to acquire unprecedented control of Allentown’s elected posts. Please consider the ramifications and vote on Tuesday.

With one day to go until primary election day, I would like to repeat a letter I wrote in support of Ce-Ce Gerlach​ and Mark Smith​ for Allentown School Board.

To have a strong mayor attempt to dictate elections with his own PAC to gain even more power for his own political goals is not my idea of a collaborative and just political process. Ce-Ce and Mark are independent thinkers looking after all stakeholders within the district. Who defines the future of Allentown must include more than a select few. Moving forward includes lives of people and children not just the construction of pretty buildings.

Vote on Tuesday.

April 25, 2015

To the Editor:

Ce-Ce Gerlach and Mark Smith stand out in May’s Allentown School Board primary. Independent in their thinking and wise in their deliberations, they are committed to providing a complete education for our city’s children while earning the full trust of parents, guardians, teachers and taxpayers.

Their belief in public education is strong. They expect students to be involved in the city and help it to grow cooperatively. They strive for financial transparency instead of smoke and mirrors. They acknowledge that teachers are the true core of a worthwhile education. They are not influenced by manipulative politics. They are the right choice. I urge readers to join me and vote for these fine candidates.

W. Michael Donovan, Allentown

Morning Call Link.

Day 172 —
Listening to a Friend

I am in New Hampshire for a few days and composing this on my phone.

Right now I am at a hotel listening to a friend play the piano. Have known him for 11 years. Taught my son, his stepmom, and me to rock climb. Long conversation this morning with him about life, loneliness, health, complexity, time left.  A good man and good to have time to listen to each other.

Good to get away.

To be continued

Day 171 — Can We Talk?

Days turns to weeks and on to months.  Catherine and he face their regular treatments with a smile, but the pressure and tension never disappears.  His symptoms improve.  Hers deteriorate.  She needs more time, more chemo, more assurances.  His need for transfusions disappear.  His blood counts improve.  The disparity is obvious.  He does not know what to say or do.

Their trips are fewer and fewer.  Picnics are shorter.  She sleeps more.  Is thinner.  Conversations are less lively and tend to sadness.  Is this what he will face if his treatments fail?  Has his approach at remaining optimistic helped?  Has her existence played a role?  How do friends help in a time of need.  Why has his friendship not helped her?  Has he focused too much on himself?

“Can we talk?” She takes his hand.

They again are on the river taking another walk.  The day is gorgeous.  Temperature just right.  Another blue sky.

“Of course.  Are you ok?

“No, I met with my doctor yesterday.  The latest test does not look good.”

He knows this is coming.  She has not looked well.  He has grown to like her on so many levels, and sees what is now likely.  He feels so lucky that his time has not come, after being told he could die in 4 weeks.  Now, he is with someone who played such a role in his success.  She is failing.

“I don’t know what to say, Catherine.  Help me understand what you feel.  What you want from me.  This is new, and I am an idiot.  Forgive me.”

“Why should you know what to do.  Who really does?  I don’t know what to do.”

More discomfort.  “I should know.  I need to know.  I want to help.  To be there.  You should not be alone.

She bumps his shoulder.  “You have been great.  Do not think anything else.  Facing the prospects of death is impossible, I believe.  I am doing the best I can, and things are just not working.  I am not particularly religious.  Afterlife has no meaning to me.”

Guilt.  “I have been so lucky.  What I have is a threat, but the medicine has worked so far. Everyone says I look great.  It’s like, am I really sick, but then, I, too, have to have my shots on Monday morning.  Without those, where would I be?”

“Why should you feel guilty?  Your treatments have worked.  Mine has not.  It’s not your fault.”

“I guess I can’t tell myself that it’s ok to consider my situation,” he says.  “It has turned out so much better than what could have happened.”

She takes his arm.  “Perhaps it is ok not to understand how to handle relative disasters.  You do the best you can and show empathy as best you can.  You might not get it right, but no one is perfect.”

“How long?” He asks.

“A few months.”

To be continued…

Day 170 — Of Love

“Do you still believe in love?”

“I think so.”

Dinner was almost over.  They had indulged on desert after hours of conversation.  Their meals were extraordinary, with new flavors that at least he had not experienced.  Scrumptious.  His, Cod.  Hers was Salmon.

Catherine looked at him, waiting for their eyes to meet.  “I mean, do you think you can ever love again? Marry.  Commit.  I know you have been hurt.  So have I.  It is a question I ask often to myself.”

He did not break the gaze.  “I am trying to define love.  I know I got it wrong for many years.”

“How so?”

“Tough to describe, even to you.  Part of it is not feeling different levels or degrees of love.  Even simple relationships and friendships were difficult to define at times.

“And now?”

“Catherine, I wish I knew.  But my illness helps to see things I never understood.  How about you?”

“I guess.  Perhaps, I am better at it than you.  I see your introversion and awkwardness in situations.  You do not project yourself.  You stand back, although over the last few months, I can see that your confidence has increased.  I have seen you stand up for yourself differently, on occasion.”

“I am told I do not persevere on things that matter to me, or that I push too hard and piss people off so that what I would like to occur does not move forward.”

“Why do you see different definitions of love?”

“It’s the grey areas that I have missed, and misinterpreted.  I supposed that I do have a better sense now, less impulsive, more in tune with what might not be good.  Discerning seems to be the right word.”

“So, can you love again?”

“Romantically?  Too scared to say right now.  To love a friend?  Yes, that is what I need to learn.  But it comes more easily when you know any friendship can end suddenly from illness.”  He looked at her even more deeply.  “Are you ready for love?”

“That’s why I asked.  I don’t know what to think.  I have no answer, but my illness seems to have raised the same quandary.”

To be continued…