Adventures at an Infusion

 So I saw Dr. Backes and I came away with some questions about my CT Scan.  I knew that there was some questionable something  - an inflammation or new nodules in my chest xray but basically everything else was getting smaller.  I didn't realize there was something questionable in my peritoneum - thickening or something.  So I looked it up this morning and it is a big fat maybe.  More of my living in the "I don't know."  I think I will give it to God.

The other thing that happened was when I got my infusion.  I was all settled in.  I had made John and me a sandwich and gotten started on the first infusion of anti nausea medication and was all set for chemo and John went to get more snacks.  I was behind a curtain literally tied up with  tubes and I heard a crash.  And the nurses came running.  I figured he fell and he did.  I could only hear what was going on.  Finally a nurse informed me that he fell and they were getting him up.  They put him in a massage chair and he rolled past and I waved.  They wheeled him in the space adjacent but I still couldn't see him.  He had ice on his elbow and hip. The nurses were extremely solicitous and joking with him and said they were not used to taking care of a man!  They  could not help him beyond what they had done  and called the EMT who wheeled in a bed for him and asked him whether he wanted to go to the hospital.  He said NO and they left.  Crazy afternoon.

Then they started  my 30 minute final infusion.  When they checked on me a half hour later it turned out something was  wrong and it had not worked and the bag was still full.  By this time it was at the end of the day and I was left with two wonderful nurses to get it going right.  I left that day 5:30 after starting my day with PT  at 10:15.  What a day.  

All you can do is laugh.

I finished The Book of Joy by the Dalai Lama and Desmond Tutu.  The second pillar is humor and he writes:

"Smile and see if you can chuckle at your problem, at your shortcomings, at your frailties.  Try to find the humor in the situation and in your struggle.  Even if it is a very grave and serious situation, there is often some humor that can be found.  The human drama is often a comedy and laughter is the saving grace.  This ability to laugh allows us to accept life as it is, broken and imperfect, even as we aspire to a better life and a better world." 

 Sometimes all you can do is laugh.

Spending the Afternoon with my Mother

Spending the Afternoon with my Mother

After my mother died in November of 2000 I was given a box full of letters, clippings, yearbooks and various memorabilia.  Shortly thereafter I moved to Columbus from Bowling Green and I had Kacey store it for me.  This summer she returned it to me.

I spent the afternoon perusing the many letters and newspaper clippings and pictures that had been collected across the years. The box was full of her life from birth to death including some notes of  sympathy after she died. 

One woman – her college roommate has described her as a “real trooper” and a  “great example that life was meant to be lived everyday with enthusiasm.” While as a mother, I often encountered her as worrying and anxious – this as the Marge or Margy I encountered in this letters.  I always knew that she was an athlete in high school and college playing three sports every year.  What I didn’t know is that she was a thespian too performing in plays and musicals and high school and college as well as community theatre with my Dad in retirement.  She wrote song parodies throughout her life and was a strong alto in every church choir as they moved around the country for my Dad’s job.

What drew me this afternoon was to read “the letters.”  This is the first time I read them all the way through.  This was a correspondence between her and only and older brother Harry when he was serving in  the second world war. They begin in September 1943 and end in November 1944.  She was in a student at Elmira College and he was away from home.

He first served in Fort Bennington and then Colorado  in and then Europe.  He addressed his letters to her “Dearest Margy”  and  often ended them with “love to all, Harry.”

They were always upbeat and chatty letters with him sometimes teasing her about her new beau – my Dad, Wayne Gersen – and talking about the food he was eating and the movies he had seen or heard of.  Once he referenced the World Series as he tried to keep up with what has happening back home.  He wrote in appreciation for the food my grandmother sent – Melba toast and jam and candy  - and was especially thankful for the local newspaper  - The Swarthmorian – that he was sent.  Sometimes he complained about heat  or boredom or just plan homesickness.  Margy wrote about the events in her life in college – parties, visits from friends, her plays, and the movies she had been too. 

It was when he went to Europe and that the reality of the war became real.  He writes

“I wish I could tell you what I am doing or where I am , but censorship is pretty strict over here.”  And later in that same letter remarks on reading the local paper and finding out that “Johnny Ogden” was killed in action.  This was written in October 1944.  He wrote his sister three times that month and three more times in November.  He was clearly writing many people he said because he wanted to “keep the correspondence flowing.”  Letters were a lifeline back home which he truly wished to be.

Among the letters I found was a very small yellowed newspaper clipping from the Swarthmorean.  This was the headline:

Lieutenant MacMillan Killed in Germany

“Wounded previously, Lieutenant Harry S. MacMillan,23,  son of Mr. and Mrs Stanley Macmillan was killed in Germany December 15.  He was one of eight from this area listed today by their families as killed in action.”

And then Harry’s letters of course, stopped.  The next grouping of papers included many cards of condolence and a copy of the service from the church as well as the minister’s sermon which did not mention Harry by name.

The letters after that were ones about my mother’s engagement and then graduation from Elmira College.  She did mention in a letter home that she was grateful for her parent’s encouragement that she complete college – presumably after Harry’s death.

There is much more I can write about this time in her life but I can only say that – yes  - she was a trooper.  She kept going in the face of enormous grief just as she did enduring a life moving her family around the country for my Dad’s work just as she did making a life for herself after my Father’s death.  Just as she did in the face living with cancer for 8 years.  She was a trooper. 

I was blessed to be her daughter

Today

Today is Saturday game day.  The big game is on at 7:30 tonight and John is getting ready.  We went out to breakfast and picked up some beer and eggs and oranges and we will be home for the rest of the day.  We are both wearing our OSU sweatshirts and are ready for the game.

Since I have last written we took a river cruise on the Mississippi which was just perfect for us.  I loved sitting on the balcony and watching the barges and the scenery on the river and we had several tours which were enlightening.  We toured a plantation and were reminded of the reality of slavery in our country; we toured the Vickburg military sites and contemplated the horrors of the civil war and then in Memphis stood in the parking lot and observed the balcony on which Martin Luther King was assassinated.  It was sobering.  At the same time we had time to read and relax, enjoy excellent meals, illuminating lectures and wonderful live music offerings.  It was perfect and we signed up next summer to finish the river and go from St Louis to Minnesota.  

So, we are continuing to make plans to enjoy the life we have been given.  I am on a clinical trial and after four infusions everything is going well.  My numbers have gone down from 144 to 100 to 70 to 64.  If it gets under 35, I think that will constitute remission.  I don't whether that is in the cards for me, but I definitely am blessed today.  

There are always side effects that continue.  My daily companions continue to be neuropathy, constipation and fatigue.  My problem is that I often think that I have more energy than I do and have to curtail plans.  Last night we wanted to go to a concert at the church and at the last minute I realized I did not have the energy for the drive there and back and the event itself.  That is my life and I appreciate all that I am able to do - like play pickleball - after two plus years after the diagnosis.  

So, today is game day and we will watch a lot of football and enjoy the gift of today.