Fred January 2016

A Wonderful Holiday

Greetings All!  Happy New Year!  

Sorry I haven't posted recently.  I have been very busy researching GBM, arguing with my doctors, getting Radiation/Chemo treatments, walking, sleeping, and spending some great times with my family and friends.  

I finished my 6 weeks of Rad/Chemo with the expected fatigue and more than expected residual hair.  I switched my Neuro-oncology  care from Abbott Northwestern (ANW) to Mayo because ANW was unwilling to entertain tests or treatments outside of the 'Standard of Care' for GBM (which I consider much too conservative for such an aggressive cancer).  To my dismay, I found Mayo to have the same attitude, though the depth of the medical team is better and they have offered me an excellent Clinical Trial (CT).  I am having blood drawn today to confirm my eligibility.  

I have received such an outpouring of love and caring from family and friends this holiday season.  All of my children, Mario, Matthew, and Maggie, visited at Thanksgiving and we did our traditional cutting of the Xmas tree.  Pam & I made a short visit to Baltimore to see Maggie, Brian, and their new house; very nice.  Maggie came to MN for Xmas and Pam and I flew to my Mom's in the SF Bay Area for New Years.  Mom has a great house for entertaining and most of my siblings and their families came by as well as Mario and Matthew with his sweet girlfriend, Estrella!  

I think it was a special holidays for all of us!  There is nothing quite like a heightened awareness of our mortality to help us appreciate our times together!

I just recently tendered my resignation at Carleton College Mail Services.  I had several 'incidents' recently where I had trouble communicating when I got overly tired or stressed.  It became clear to me that I could no longer entertain the hope of returning to work.  I will miss working with my students and all the wonderful faculty and staff that I have befriended during my four years there.  

Thanks to all my family and friends for making this a memorable holiday season.  Let's do it again next year!

Best,
Fred.

In 3rd Week of Rad/Chemo

MISLEADS, EXAGGERATIONS, & WISHFUL THINKING

Having re-read my 1st post, I want to admit that you may expect some exaggerations, wishful thinking, and potentially misleading statements in this blog. I thought I would explore these a little with you.

In my first post I stated “I do love the bard!”.  I do; that is true.  However, it is also true that I am not all that familiar with his works.  I’ve read a number of them, saw a performance at the Globe Theatre with my daughter, Maggie, but have only really studied one: Romeo and Juliet.  We studied it in 8th grade and were made to memorize 10 dialogues of our choosing.  That assignment was a blessing that has enriched the rest of my life.

I love to quote Shakespeare because his words can illuminate life so well.  Working with blurry-eyed student employees who are struggling with the growing burdens of adulthood, I have often quoted Friar Laurence:

“Care keeps his watch in every old man’s eye, and where care lodges, there sleep will never lie; but where unbruised youth with unstuffed brain doth couch his limbs, there golden sleep doth reign.” 

The students get it.  It usually elicits a far away look and knowing smile. 

I have often raised my fist to the sky and yelled (mostly in jest):

“Then I defy you, stars!”

If nothing else, it feels good to just say it. 

I’m certain that, the first time I saw Pam, I thought:

“Oh, she doth teach the torches to burn bright!”

I have often quoted the speech from Act 3 of Henry V to athletes entering battle and have never met a competitive, male athlete that was immune to it.  I believe my son, Mario, first shared it with me. It was my habit to text or speak the first line to my sons before they entered a competition.  That one line communicated so much.  They always responded to it in a fashion that made me proud!  Here are my favorite parts:

“Once more unto the breach, dear friends, once more;
Or close the wall up with our English dead.
In peace there's nothing so becomes a man
As modest stillness and humility:
But when the blast of war blows in our ears,
Then imitate the action of the tiger;
Stiffen the sinews, summon up the blood,
Disguise fair nature with hard-favour'd rage;

…

Now set the teeth and stretch the nostril wide,

Hold hard the breath and bend up every spirit to his full height.

…
I see you stand like greyhounds in the slips,
Straining upon the start. The game's afoot:
Follow your spirit, and upon this charge
Cry 'God for Harry, England, and Saint George!”

Every regatta I saw either of my sons line up at, every kick-off team I saw Matthew assemble with, I would be thinking:

“I see you stand like greyhounds in the slips, straining upon the start”,

and I would be moved. 

So, the statement “I do love the bard” is absolutely true.  Clearly, he has illuminated and enhanced my experience of life.  Yet that statement infers that I am well versed in Shakespeare, which I am not.  This is a totally unintended, innocent mislead.  More may follow; please be gentle with me. 

Another line from my 1st post gave me pause.  I wrote:

“My doctor stated, correctly, that I am starting treatment 'standing tall', meaning I am physically strong and mentally sharp…”

In this instance, I quoted my doctor’s statement, but I went farther in adding that he was ‘correct’.  This was not so much a mislead as an attempt to convince myself of something I wanted to believe. 

The truth is, I have had three years of knee and ankle problems that, at times, has me hobbling around like an old man.  Presently, my knees are a real problem.  I have to walk to keep my blood count up, but I can no longer take Aleve, or any analgesic that deals with inflammation. 

Recently, I finally listened to Pam and started to ice my knees several times a day and that has helped significantly.  I’m not hobbling so much and perhaps I am ‘standing a little taller’.  I suppose I should listen to her more! 

Today marked the half way point of my Rad/Chemo treatment.  I’m feeling pretty good and I still have my hair.  I will attach a photo from earlier this week.

By the way, I feel perfectly comfortable with embellishment for the author’s self-aggrandizement and the reader’s entertainment; that is good fun for everyone! 

All my best,

Fred.

3 days after craniotomy; mirror shot.

This Time, It Was Bigger Than An 8-Iron!

When I was in junior high, I got hit with an eight iron (golf club).  You can see the scar on my site photo.  It runs from the corner of my mouth down my chin.  It was a good hit.  It went all the way through my lip and knocked out three teeth; I had over 25 stitches in my gums alone, plus the plastic surgery.   

This time the hit was a bigger one.  It didn't hurt near as much, but to quote Mercutio: "No, 'tis not so deep as a well, nor so wide as a church-door; but 'tis enough, 'twill serve: ask for me to-morrow, and you shall find me a grave man."  (I do love the bard!)

Here is a synopsis of my recent adventures:  On Saturday 9-26-15, I was in CA for a family memorial service where I had a major seizure; my first.  On Tuesday 9-29-15, I had an MRI back home in MN, followed in short order by two more MRIs, and a Craniotomy/Biopsy/Resection on 10-8-15.  The Neurosurgeon was able to remove 95% of the tumor without negatively affecting my speech center, around which it was wrapped.  That was the good news.  The bad news was that it was a Class 4 Glioblastoma (GBM), a very aggressive brain cancer with a pretty steep mortality/time curve.

I was home two days later in pretty good shape.  I began my 6 weeks of Radiation/Chemo on 10-29-15. I am just into my 3rd week and feeling pretty well; I would say amazingly well, actually.  My 'innards' have adjusted to the chemo drug and fatigue is the main issue now.  I usually need to rest after 2-3 hours of activity, but I am still, for the most part, nimble of mind and ruggedly handsome.  I will admit to a little mental sluggishness when I am tired and my hair is supposed to go soon.

After the 6 weeks of Rad/Chemo, I get 2-4 weeks to recover, and then begins 6 months of Chemo.  This is considered 'Standard of Care' for GBMs.  Not being overly impressed with this regimen, my lovely wife, Pam, and my oldest son, Mario, have been helping me research treatment options.  It reminds me a little of a story: A friend visits W.C. Fields who is on his death bed and is shocked to find him reading the bible. When asked what he was doing, Fields replied, "Looking for loopholes!".

There has been a great outpouring of support from family and friends, which I appreciate.  Pam has been doting on me (no surprise to those who know her) and, as my best friend, is a constant source of comfort.  My oldest son, Mario came out for 18 days to help get us settled.  Matthew, Maggie, and her boyfriend, Brian, have been out to visit and we will see them all again for the holidays.  My family, Pam’s family, neighbors, the Carleton community, and numerous friends have all responded to make me feel very loved. 

I like to think I have a good attitude about this situation.  I am not depressed or wallowing in pity.  Neither am I kidding myself about the prognosis.  I am taking an active role in the treatment process and hope to be one of the lucky few who stretches their life to 5 years or beyond, but I'm not going to ruin the rest of my life fighting the inevitable. I'm not Romeo shaking his fist skyward, screaming, "Then I defy you, stars!".  

Regarding this diagnosis, I consider myself lucky in many ways:  1. There are worse 'ways to go'.  Many cancers are painful; this one is not!  2. My doctor stated, correctly, that I am starting treatment 'standing tall', meaning I am physically strong and mentally sharp, and Dr. McCue, my neurosurgeon, did a stellar job removing 95% of the tumor from a very difficult area.  3. I dodged the bullet of bone cancer in 2000 and, since then, have sensed that I was living on borrowed time.  So, I don't have the feeling of having wasted my life or of being 'ripped off' from a nice, long life.  (Well, maybe just a little!)  4. Looking out at the world and seeing so many other, worse fates, it is hard to whine too much.  This time I have an 'official notification' and will make the most of it with my family and friends.  

Regarding my life, I also consider myself lucky in many, many ways, but that is for another time.    

All my best,
Fred.