Side Effects: The Gift that Keeps on Giving

When last we met on this blog, I was concerned about my hair falling out and about gluing my fingers together. Rather than waiting for the anxiety provoking event of hair loss to happen, I called my hairdresser and asked her to give me a buzz. As much as I anticipated crying and gnashing of teeth as I saw my gray locks fall to the floor, that wasn’t the case. Much to my surprise, I actually  like my new look.  Now I can shake my head like my dogs do rather than blow drying my hair. When my head was completely buzzed, Donna asked Lucy to give her a quasi-buzz in solidarity. Such is the nature of a true partner!

Even though I had been looking forward to attending the 5th annual Network for Public Education conference in Indy for the past year, my anxiety about Sherlock, my hair loss, and my finger cuts was pretty much off the charts. What I didn’t count on was additional side effects on my skin. When we got to the hotel in Indy, almost on cue, the skin on my face started peeling, and my face felt as though it was on fire. That has now been replaced with an itchy rash on my arms and chest that is driving me bonkers. Last Tuesday when I went in for my chemo, my oncologist decided to let me skip my treatment to give me and my skin a break. Side effects are the gift that keeps on giving.

Back to the conference...public education advocates attended the NPE Conference, and the experience was positive, inspiring, and energizing. Despite all of the negativity that the news brings us on a daily basis, the conference was warm and hopeful and collaborative. On a more personal note, this was the first year that NPE gave an award for grassroots activism (in my name), and I am still blown away by that honor. “The award will be given out every year for teachers, parents, and other activists who display courage, tenacity, and heroism on behalf of public education and the common good.”  This year's winners were the teacher-activists from SOS Arizona who won the right to put a referendum on the ballot about vouchers.

As you have probably noticed, I am used to getting attention as a smart-ass,  but getting attention (and a standing ovation) for something like an award in my name was unexpected and mind-blowing, and I am still at a loss for words for what this meant to me.

Phyllis Bush gets a standing ovation at #NPE18indy before bestowing the first annual grassroots awards that bears her name.

When I first began this cancer schmantzer odyssey nearly two years ago, I had lots of concerns. Every time that we went for my doctor appointments, I learned not to anticipate what might happen because no matter what I anticipated, it was always something different.  I have learned that I can deal with sensitivity to cold, lactose intolerance, neuropathy in my feet, peeling skin and rashes, a recalcitrant colostomy bag named Sherlock, and who knows what other side effects are coming down the pike.
In the words of Roseann Rosanna Danna, “If it's not one thing, it's another. It's always something.”

Despite the crap sandwiches that I have been served lately, I am fortunate to be surrounded by family and friends whose love and support make me realize that there is good in the world, and it is worth fighting for.

Lucy, Ethel, and Sherlock

One of the new side effects that I have experienced with this round of chemo is a preponderance of excessive skin drying and cracking, resulting in what looks like random paper cuts on my fingers. Fortunately, I was able to get an appointment with a dermatologist who specializes in chemo related skin issues. In addition to getting some prescriptions to help give my skin some relief, my doctor recommended using super glue to close the cuts, and I am happy to report that super glue did help close the wounds and give me some relief from the ouchiness and bleeding of all of the cracks and quasi-paper cuts on all of my fingers. However, in my zealous attempt to close all of the wounds, I inadvertently glued my fingers to the super glue container. This added a Lucy and Ethel element to this adventure as Donna tried rubbing alcohol, finger nail polish remover, and a pair of scissors to pry my hands from the super glue container.

In the last episode of my adventures in Cancer Schmantzer land, I was dealing with a recalcitrant port with a mind of its own. Last Monday when I went for my chemo treatment, I suggested to my nurse that the port was probably not going to work, so we might as well prepare to get my blood work done the old fashioned way--intravenously.  Now that my life seems to be lots of trips through the twilight zone, my port decided to work. Score one for me. However, that small victory was short lived. Right after the port began to work, my colostomy bag started to leak. While connected to my IV hook ups, Donna and I headed to the rest room where she morphed into becoming the poop whisperer; she helped clean me up, change my clothes, and then we went back to business as usual. Ah, such is my new normal.

In the middle of this whole batch of crazy, I have been spending a lot of time in anxiety land thinking about my attendance at the upcoming Network for Public Education conference. Since this conference will be held in Indy, I have the honor and responsibility of welcoming people to the conference and of introducing super star, Diane Ravitch. While I am thrilled with the prospect of this, I am also concerned that I will wake up that morning, and as predicted in the side effects to come, my hair will all be lying on my pillow case, and I will be looking like a bald cartoon character.  However, I am packing two wigs and some baseball caps, just in case of a hair emergency.  Add to that my concern for Sherlock (aka No Shit, Sherlock), my wayward colostomy bag, which seems to have a mind of its own.

On another note, yesterday I had lunch with three of my former students from the Class of ‘88 which helped to alleviate some of the frustrations and anxieties of the past week. Besides the stimulating and interesting conversation, I was heartened that “the girls” that I had remembered so fondly have become amazingly thoughtful and kind women. We talked about their lives, their hopes and dreams for their kids and for themselves, and their concern about how mean spirited and exhausting the world has become.

Despite the crap sandwich that life has given to me in recent months, I try to remember the words of Louis Armstrong, "I think to myself, what a wonderful world."

https://www.youtube.com/watch?v=CWzrABouyeE

My Terrible Horrible No Good Very Bad Week

I usually try to blog every few weeks, but recently, I have not felt much like blogging. While my last chemo treatment was relatively unremarkable, my port once again decided that it didn’t want to function properly. Accordingly, my nurses had me go through the usual drill: raise my arms over my head, lean to the left, lean to the right--the only thing that was missing was being asked to stand up, sit down, fight, fight, fight....and maybe a trapeze. When those moves did not work, my nurse administered what is called a “clot buster,” and then after an hour or so, the chemo proceeded as usual.

The extra added attraction for this more powerful round of chemo is that I have a whole new set of side effects. My skin has become so dry that I now have what looks like paper cuts on my thumbs and fingers, limiting my manual dexterity. The only thing that seems to help is to put medicated lotion on my hands and to wear gloves to bed, making me look pretty much like Mickey Mouse when I get ready for bed.

Adding to the stress of the week, our super happy, energetic and spirited dog, MacGyver, ended up at the Emergency Vet for several days. We finally were able to bring her home on Friday, and she is slowly getting back to her old self.

Unfortunately, layered on top of all of this, I have been watching this sad spectacle of the Kavanaugh hearings, and I have been dispirited by the responses that I have been hearing and reading.  Many  have chosen sides,  but I am astounded by the level of acrimony and vitriol being used to defend their positions. I am disappointed by the false narratives and by the shaming and blaming and by the us v. them  herd mentality that seems to be omnipresent. I am left to wonder what has happened to compassion and empathy?

Despite the vile words of some on social media, I wonder how we have allowed ourselves to be complicit in this ugliness? During my two year odyssey with cancer, most of the people that I have encountered have been kind and decent, and I am left with the same hope that Anne Frank expressed:
“Despite everything, I still believe that people are really good at heart."