Day 96 —
Transition Point Looming

I have recovered mostly from the vertigo and sickness suffered over the weekend.  Still feel uneasy, but much better than the worst moments.

On Friday night, I talked to the doctor at UPenn, and he confirmed a recommendation that I undergo another biopsy to see if progress has been made.  He began a long conversation about a bone marrow transplant that might not be possible because of my prostate cancer.  Apparently in some cases with such cancers, a transplant is not recommended or useful.

Beyond that, if they do think I am eligible, I would have to decide what to do. I have read good and bad stories about bone marrow transplants.  Just last week, a friend who lost a close relative to a different cancer said, “don’t hesitate to try anything.”  And there is the rub.  Do I?

I lost 3 days of a good life this weekend.  Today, I don’t feel all together.  I don’t like that.  Yes, I am alive, but I will have to decide what kind of a life I want for up to a year (that is the time I am told that is necessary for the new marrow to take) with chances of complete failure.  Do I instead, live from transfusion to transfusion, enjoying life in between and see how far I am able to go?

I will be looking to understand the statistical “spread” of results.

No need to make any decisions yet until the results of the biopsy and perhaps a few more treatment cycles are completed.  Nevertheless, that time is coming, and I am fine with having to consider those choices.

The first step IF I chose transplant will be finding a donor, and that will not be easy.

Otherwise, as I have stepped away several times to complete this post, I feel much better.  Part of the problem might have been clogged sinuses.  The nurse recommended some over the counter medicine, and that seems to have worked for now.  Other reasons for stomach ailment include the treatments.  That is well documented as a side-effect.

To be continued…

Day 95 — The World
in Slow Motion

That is what the last few days have seemed like.  I would wake, and the world would spin counterclockwise, round and round, slowly, like a carnival wheel.  It was strange to be in a world of slow motion.

I did not like the sensation.  Awful, limiting, weird.

Today though, Sunday, I feel better, but better is relative.  I am still working my mind slowly and walking more carefully than normally.  Thank you to my high school friend for a home remedy to attack vertigo.  Seems to have worked!  I am grateful.

My one regret is that I am four days behind on grading a homework assignment.  I hope to return to the papers today.  Owe it to my students.

As usual, one of the tasks that make life worth pursuing is to ensure that my students are well taken care of.

To be continued…

Day 93 — Some Side Effects

Yesterday afternoon, I went home to take my anti-nausea pill.  I had enjoyed my second day of not getting sick, and wished not to take chances.  About 3:30pm, I laid down for a nap.  Slept til 9:00pm!  Went back to sleep 30 minutes later and did not wake until 6:30am.  I guess I was tired.

However, I did not feel steady on my feet when I woke.  Thinking that I simply needed breakfast, I visited a diner near the hospital.  After eating, I continued to feel not myself.  I was early, but decided to drive myself to the hospital and see what the nurses in the Infusion Center thought.  Well, upon arrival and being brought into the center, I proceeded to get sick.

I was impressed with the speed with which they reacted.  They immediately took blood and put an IV in me so that I could get liquids if I were dehydrated.  There was only small improvement over the next hour.  I would move my head and feel like something was trying to catch up.  Eventually, they decided to try anti-vertigo medication, and that worked.  I saw my doctor.  He decided that I should take a day off from the shots.  Wait until Sunday and complete the cycle.

Unfortunately, my sickness was not over for a while, but now, around 3:00pm, I am feeling better, finally.

Meanwhile, the discussion has turned to having another biopsy to see whether the Vidaza is working on my bone marrow affliction.  I received a phone call from UPenn this afternoon to say that they agree and would like to see me later in March.  Depending on the biopsy results, the discussion might have to turn to a transplant of bone marrow.  Then, the real thinking has to occur.

I would say that this was the worst day so far, but really just a hiccup.  As always,

To be continued…

Update:  By 5:30pm with anti-nausea medicine in me, feeling much, much better!

Day 92 — Chemo Brain

Further to yesterday’s post, I can tell accumulation of the Vidaza has occurred.  Although the nausea was not as challenging today, with each set of shots, I find myself having a little more difficulty with achieving long periods of concentration.  Halfway through this week.  Will be pleased to have this done on Sunday.

It’s frustrating, but I have to accept it, just as any other setback.  That is what it is all about, correct?  Be positive.  Stiff upper lip, and all that ;)

One does get tired.  I will admit.

I have promised myself that each day I will write, until I cannot.  Thus sometimes readers just have to plow through crap as I try to find a voice to explain how I feel, at this moment, when few thoughts want to come to the surface.  And that is true, a blank wall faces me.  Some events beyond the disease have disappointed me.  Perhaps that also contributes.  Why write when disappointment abounds.

And yet, I keep going.  Where?  I really do not know.  That might be the best answer.

To be continued…



Day 91 — Accumulation

With the shots coming daily this week, I can tell that the medicine is accumulating.   Side effects have kicked in with two days of injections.  Nausea and sickness.

Two possibilities:  just building up and giving me an upset stomach OR building up and will start to work.  Won’t know for a while.  The latter I hope.

Meanwhile grading today and meetings.  Not much else to add, but hope it is a normal day.

To be continued…


Day 90 — Excellence Counts, Too

On Day 82.2, I wrote about diligence, and how important it is as an antecedent to the search for excellence.

In no way would I dismiss the effort to strive for excellence.  Diligence without the goal of excellence just does not work for anything one attempts.  On Day 27, I wrote about how trying is sometimes good enough.  Perhaps excellence is not achieved, but certainly the result is better than nothing at all.

So what I cannot stand are organizations or people who settle for the least common denominator.  This can be said about education.  I believe that we must make education available to everyone.  Nevertheless, I also believe that learners must be stretched.  If not, they will slowly discover in life that they are often unable to shift with the times, take on new information and knowledge, grow secure about what they know, or cope with any other calamity that will devalue themselves in the marketplace.  Worse, without pushing into uncomfortable arenas of knowledge, they may tend to slip into one-sided perspectives, unable to readily accept that debates do not have to be strident.  They can be cooperative and participate in a civil exchange of ideas.

This is what excellence is all about, I would argue.

Quickly, two groups are evolving in American society.  Those in tune with the massive changes in communication, data, and global logistics applied to all products and services are reaping enormous value.  Others are falling behind, as they unknowingly collect data piece after data piece, pushing keys on a register, with little idea how they are part of a cog that sucks more and more cash from an unsuspecting public.  Prospective students who recognize this rapidly occurring split are gravitating to schools that push the envelope.  Others are chasing degrees where the fee is paid just to get the degree.  This is true for almost all disciplines, trades, professions.

There are very few at the top of the knowledge pyramid. We can accept and respect that.  There are lots of very smart people who easily can comprehend new tools and skills.  The rest of us have a choice.  Continue to try to understand how the world works, or give up.  Schools have a choice.  Provide opportunities to stretch, or hide behind a smoke screen of marketing puff.

I prefer trying to be excellent by being diligent.

To be continued…

Day 89 — 4 Cycle Engine:
Will It Start?

Today starts my fourth cycle of treatments and possesses special importance. My doctors say that we should see results in my blood production between the fourth and seventh cycle.  Hard to believe.  The time has passed quickly.

Here’s hoping, I would say.

Really cannot add anything more.  Seven days of 3 or 4 shots in the belly.  Between 21 and 28 total, depending on what the pharmacists do when mixing the Vidaza.  They need to put 155 ml into me each day.  They use either 3 or 4 needles.  A fun experience, but not exceptionally difficult to tolerate.  Usually nauseous on the first day.  Then that clears.

Lenny Nihan, I did try your product, Sea-Band.  Helps on light nausea, but not the more challenging kind.

Just another day.

To be continued…

Day 88 — Mental Health:
Ignore At One’s Peril

We all know people who suffer.

Mental health.  Such a disease.  We don’t acknowledge its importance, or how easily someone can slip into a steady spiraling down.  They withdraw, often refuse help and slip further.

Sadly, there are many paths deteriorating mental health can take, especially when not acknowledged and ignored.  I will not go into the list.

Back in 1994, while part of a team of people looking at problems in Portland, Maine, I suggested that mental health was becoming a serious issue, not only in Portland, but also throughout the country. Unfortunately, the idea of developing some form of response to growing mental health problems in the city was not accepted.

For almost 20 years, I’ve seen the situation get worse and worse and worse.

Evidence of this is so tragically seen as a result of a nation at war, a world only slowly receding from the brink of economic disaster, events beyond our control

We can pop pills all we want in an attempt to soften the effects of disappointment or stress, but I have been convinced that talk therapy must be an important strategy, too, and that good counseling goes a long way toward healing. The problem is that talk therapy, in itself, is slow, costly, and difficult to scale up.

Admitting to distress and pain is not easy. The usual response is blame and guilt or worse, hate and lashing out.  It takes time to cope and understanding from others that all is not well.

We live in a world of growing anger. I cannot help but to ask that if we were able to sit and talk out our differences and pain, trust would be rekindled and healing occur.

Sometimes, I feel it is only wishful thinking.

To be continued…

Day 87 — Changing Of
The Guard

Yesterday, I spoke of conflict and confusion.  How different perspectives of life’s events battle inside our head.

Writing helps tremendously in sorting out the details of the fight and what at first appears to be the carnage on the field.

Today, I move a bit more to understanding the improved view of what is happening.  Was it really a battle or merely a debate, one that has lasted for years without resolution?

I am left to see chunks of old thoughts wiggling away, split, defeated.  Tired, but energized, new thinking possesses the territory.  The thoughts are connected, understood, providing confidence to enjoy the end result.

Maybe the subconscious was affected by a lack of blood.  I needed 2 units of red cells yesterday on top platelets.  5 hours in a chair with tubes hooked to you provides a long time to think.  Maybe recent conversations have helped with the new perspective. Maybe, after all, dreams do work as people say.  Maybe it is just the inevitable fighting that must occur when faced with mortality.

I don’t know.

The changing of the guard, however, is clear.  As I begin my fourth cycle of shots Monday morning, I look at life differently than I did 87 days ago.

To be continued…