Home from the Hospital for the Holidays - 2010

According to the hospital’s records, I checked in on Thursday, October 28^th, and was discharged on Monday, November 1^st—call it five days and four nights. Psychically, however, it seemed much, much longer.  

Home, though, wasn’t what I remembered. It wasn’t that I was a “Stranger in a Strange Land”; it was that I was a “Stranger in a Familiar Land”.[1]

Well, what do you mean? I mean that the neighborhood hadn’t changed, the house hadn’t changed, and the weather hadn’t changed, but I had changed.

Under direction from the nurses, Barbara removed all the slippery “throw rugs” in the house, which would be like throwing a banana peel in front of Elmer Fud (if you don’t know who Elmer Fud is, ask somebody who watches too many cartoons).

Our first floor really-good-imitation leather chair became my base of operations. It had a sturdy footstool on which I could stack papers, rehab materials, and outdoorsy magazines.

Physically, I was still weak. I tired easily. And I wasn’t yet sleeping more than maybe two hours a night at a time.

In some ways I could better see what I couldn’t see (if that makes any sense at all).  My right-eye peripheral vision, which before the operation was non-existent, had turned into a smooshed Monet painting. More specifically, through the right side of my right eye I could see a cacophony of colors. The colors changed with the scenery, but I couldn’t really see anything specific—like a waffle or a kitchen counter corner. While I was told that I hadn’t lost any brain cells affecting my vision, we all knew that they had just been “squashed” and entangled with the tumor[2].  While we hoped that I might regain my peripheral vision, there was also a chance that I might not.

Away from the comfort of the hospital, I was forced to consider my future.  It seemed uncertain, especially early on when I was still learning how to walk without curling my foot.

Giving myself a status report, I told myself that on the positive side:

1.    I was alive.

2.    My family loved me and was unbelievably helpful.

3.    Unlike many other brain tumor victims, I could talk, walk (well, sorta) and read.

On the negative side:

1.    My eyesight was crappy.

2.    I was physically and emotionally fragile.

3.    I was certain that my brain wasn’t quite using all four cylinders.

4.    And I had a “bit of Blob” left in me (“Blob” was my name for the tumor).

To be continued by “Can You read?/Post-Operation Friend & Family Reactions”

---

[1] If you hadn’t read this award-winning science fiction novel, go to your nearest library and check out a copy.

[2] This was how my sister referred to the situation.  I appreciated the fact that she didn’t describe this to me with medical accuracy and, instead, talked to me in terms I could understand.

Cancer Vixen Book Review

I just read Cancer Vixen by Marisa Acocella Marchetto.  Why? Because…

1.    The idea of a graphic novel about cancer seemed intriguing, e.g. would the “cartoony” format trivialize the situation?

2.    I wanted to know if it would seem similar or derivative of Suzy Becker’s wonderful “I Had Brain Surgery, What’s Your Excuse?”

3.    I wondered how would cancer change somebody who has a “vixen” self-image?

So what’s the Cancer Vixen all about?  The book tells the multilayer story of Ms. Marchetto, a nationally known cartoonist (New Yorker, Modern Bride, etc.) and avowed fashionista, who learns that she has breast cancer. The ensuing treatments, including chemo and radiation, are debilitating and, financial insult to cancer injury, she doesn’t have medical insurance.  If that wasn’t enough, her heavy cancer story is unfolding at the same time as a serious romance is budding.

So, what did I like about the book?

-The cartoons were terrific!  They were not only great story-telling devices; they helped express the depth of her emotions – from terror to rage to self-pity and beyond (and they didn’t remind me of Suzy Becker’s work).

-Her self-reflection, which resulted in her writing that “how can I love myself when I’ve been a narcissistic fashionista who put her priorities in all the wrong things?”

-She draws the scary chemo equipment including needles, mediports and chemo bay.

What didn’t I like about it?  Small things – the name dropping…I can’t think of anything else.

I am also impressed that she started the Cancer Vixen fund for uninsured victims of breast cancer.  Here’s a link to the YouTube video  about it - http://www.youtube.com/watch?v=d8XjRWNjh64  - and the website for the fund - http://marisamarchetto.com/blog/?page_id=13

Hospitals: Anything But Restful

One thing I noticed following my craniotomy last year is the “Catch-22” regarding sleep and rest in hospitals. As I understand it, sleep and rest is of paramount importance following brain surgery because the brain only heals itself in deep sleep.

Strangely enough, a hospital is a hard place to get some rest…especially during the day.

Why? Because everybody, and I mean everybody, feels like they can walk into your room at any time.  

-“Sorry Mr. K,” (without really meaning it) blurted the guy that came around every morning at 5am or so just to peer in my eye and make sure I was alive. 

-“Time to change your IV.”  In bustles a nurse.

-“Has your bed been made yet?”  A nurse’s assistant strolls in.

-“Time for your vitals.”  Ditto.

-“Has somebody checked your stitches?”  In pops a resident.

-“Have you ordered breakfast? Lunch? Dinner?” In comes the waitress (dressed in a spiffy 

tuxedo, I must add).

-“How about your pills?  Want some water?”

-“Time for physical therapy.”

-“Time for occupational therapy.”

-“Can I clean your room?”

-“Have you gone #2 yet? Want a ‘stool softener’?”

-“You have a visitor.”

Now don’t get me wrong, I needed and appreciated all this attention, but it didn’t help me get the deep rejuvenating sleep that I craved (especially in the ICU).

The research agrees. According to an article by Dr. Mark Stibich, when we don’t sleep well, our bodies’ immune system and ability to heal wounds and other types of tissue damage is reduced. When you are recovering from surgery or illness, sleep is what the doctor ordered.´

He then reported on research that studied 16 ICU patients for 24 hours. He summarized the results saying that “They monitored the patients’ sleep during that time. Most of the sleep that patients got was stage 1 and stage 2 sleep (light types of sleep that do not refresh the same as the deeper stages of sleep). “

You can find his article posted at http://longevity.about.com/od/sleephealthandaging/a/sleep_healing.htm

Brain Injuries and Gratitude

As a brain tumor survivor, I must admit that going into and coming out of my operations I felt many, many emotions…and gratitude isn’t one of them.

I have felt sad, upset, despondent, anger and sorry for myself.  But I don’t remember feeling “grateful”. I suspect that neither has other brain tumor victims and friends and families.

Strangely, I’ve had folks tell me something like “you should be grateful, it could have been a lot worse”, which I have always found particularly unhelpful. While that may be true, it seems like whoever is saying it is trivializing my tumor, i.e. “it’s not so bad”.  My emotional, ungrateful and unspoken response is something like “Not so bad? Why don’t you try it?”

As you can see, my anger (even a year later) is not far from the surface.

Yet there’s a lot of research which suggests that “gratitude” is just what a brain tumor victim needs to feel.

Huh?

In the Journal After Brain Injury Barbara Stanhura writes about work being done by Robert Emmons, PhD, professor of psychology at the University of California, Davis, is one of its leading researchers. He has conducted several studies that demonstrate the value of being grateful.

What kind of research and what did he find?

As reported by Ms. Stanhura, in one of his first studies, some of the respondents were asked to write in a weekly journal about five things they were grateful for. Other participants were to write about five hassles they had experienced, and the third group was to write about neutral topics.

At the end of 10 weeks, people who wrote about their gratitude:

“… felt better about their lives as a whole and were more optimistic about the future than participants 

in either of the other control conditions—a full 25 percent happier.

“They reported fewer health complaints and even spent more time exercising than control participants.

“They had fewer symptoms of physical illness than the other two groups.

“The gratitude group exercised 1.5 hours more than the hassled group.”

Want to learn more?  Here’s a link to the article in the Journal After Brain Injury - http://journalafterbraininjury.wordpress.com/ - and another link to an interview with Dr. Emmons: http://www.sharpbrains.com/blog/2007/11/29/robert-emmons-on-the-positive-psychology-of-gratitude/