Ornery! Who, me?

Yesterday two of my favorite oncology nurses called me ornery. I would prefer thinking of myself as a fun loving smart ass. While I feigned that I had hurt feelings, I rather enjoyed being called ornery.  I have a long history of orneriness of which I am quite proud.

A long time ago in a galaxy far away, I was busy checking out Christmas presents when no one was looking.

These brief exchanges with the nurses made me think of The Book of Joy by Desmond Tutu and the Dalai Lama, where these two good people suggested that rather than asking how can we be happy, we should think of  how can we spread compassion and love...and that works for me.  According to them, there are eight pillars to happiness: perspective, humility, humor, and acceptance which all come through the mind. Forgiveness, gratitude, compassion, and generosity come from the heart.

What they said about joyfulness struck a chord within me.  Since I first got my cancer schmantzer diagnosis, many people have expected me to be sad and depressed and decrepit, but that is not how I roll. When people ask me how I am,  I usually say that I am fine, and I ask how they are. I prefer to make other people smile and to look forward to my making some smarty pants quips rather than going off on a sad sack riff.

Of course, all is not lollipops and unicorns in cancer schmantzer land. Usually, the day after chemo is not a walk in the park, but I see no point in wallowing in being miserable over things which I have no control. My health care team is kind, and they see me as a person rather than as a diagnosis.  They have addressed all of the questions that I have had. Then I figure that it is my job to put one foot in front of the other and deal with whatever lies before me. I try not to anticipate consequences until I have enough information to know how to deal with what lies before me.  Right now what lies before me is one more treatment....and my hope is that my care team will tell me that I am good to go.

Of course, if I had my druthers, I would not have chosen this diagnosis or any of life's other hardships, but there are many things for which to be grateful in this odyssey.

Despite the constant hammering by the purveyors of dissent and discord about how we should dislike people who are not like us, I have found that most people have the same hopes and desires for their lives. However, many people would rather dwell on what is wrong rather than trying to figure out how to make things right.

My anger and angst are usually not directed at my health situation but rather at the injustice that I see being done to others. Perhaps being ornery isn’t so bad when I can turn it towards helping others and towards fixing situations that keep us away from working towards the common good.

I have a long history of being an ornery smart ass. Until I finish my quixotic mission to right all of the wrongs that lie before me, I am not about to hang out the crepe and quit any time soon.

Test driving the handicapped carts at the grocery store

On Minions, Team Work, and Other Things

I usually start writing my blog while I am getting

Grocery shopping with my sister

chemo (my magical joy juice), and I have little else to do. These past few weeks have been mostly good, and yet my level of activity has been extremely exhausting, so that is why this blog is a day late and a dollar short.  On the plus side, we have had quite a few out of town guests visiting us recently.

Because one of the guests was in disbelief that my NEIFPE (Northeast Indiana Friends of Public Education) friends call themselves my minions, we had a Minion party so that she and her husband could see that all of this is done in good fun, and usually, I am the butt of all of their jokes and silliness.

Having said that, my minions  have been a major source of strength both before and since cancer schmantzer has become the recent focus of my life. These good people have all stepped up to the plate to take over most of the responsibilities that I have usually assumed, which has resulted in the continuity and seamlessness of our work of supporting and fighting to save public schools. Through their care and concern, they have shown the true meaning of teamwork.

While many people think that teamwork is simply a matter of working together, I see it differently. Whether it is in the classroom or in any social situation, true teamwork is often an act of love as shown in these words from William Wordsworth in Lines Written a Few Miles Above Tintern Abbey:
...the best portion of a good [person’s] life; His [Her] little, nameless, unremembered acts of kindness and of love...”

In other words, these are people who don’t need to get credit for what they do, but rather what they do is a matter of working together for our sense of community, for the common good, and for what we all think is important, and one of our primary goals is to bring back the joy of learning to children which seems to have been snatched away from them.

My NEIFPE friends and I don’t take ourselves seriously, but we take our work seriously....and despite the fact that pushing back against the likes of Betsy DeVos and her ilk (and our Indiana legislature) feels like a Sisyphean task, we keep doing it because it is our calling.

We all face personal challenges, and while the challenge that I am currently facing is a health issue, that doesn’t make mine any more significant than those who are facing other life changing issues. While I cannot change or fix their challenges, my hope is that as we face our own difficulties, that we  deal with what lies before us with dignity, grace, kindness, and love (and a sense of humor), and we all might come out better on the other side.

Warning: Cancer Schmantzer-free Blog

Dear Cancer Schmantzer friends,

This particular blog post will not be about cancer, but it will be about something which I care about deeply.

I am reaching out because at this is the time of the year, many of us search for good, charitable causes. As you search for a good cause, I hope you will think about the Network for Public Education where I have been a Board member for 4 years.  NPE has about 330,000 members nationwide. Our mission is to protect, improve, and strengthen public education for this present generation and generations to come.

As many of you know, there is a real movement afoot to destroy public schools. This movement is being fueled by Betsy DeVos, this administration, and Congress. The agenda is to replace and privatize public schools by using vouchers and charters, and in many states (like Indiana), they have had great success.

NPE fights back. Through reports, writing campaigns, films, and newsletters, we let the American public know that public education is the pillar of our democracy and if we lose it, we will not get it back. Even though we operate on a shoestring compared to most non-profit organizations, all of that work costs money. You can learn more about us here: https://networkforpubliceducation.org/

I hope that you can share some of your holiday generosity with NPE by making a tax deductible donation. You can make that donation online at https://networkforpubliceducation.org/about-npe/donate/ or send a check to:

Network for Public Education
PO Box 150266
Kew Gardens, NY 11415

Thank you so much.

Phyllis

Another Monday and Another Day of Chemo Fog

I usually begin writing my blog during my chemo-magic-joy juice cancer schmantzer treatment, but yesterday I wrote a bunch of lame gibberish because I could not come up with a post that made any sense. So instead I decided to write some of my random thoughts.

Here are some of the random topics that I thought about yesterday:

-Random thought #1: As I have said numerous times since I started writing this blog, while cancer may change how you deal with circumstances you cannot control, cancer does not change who you are or how you deal with other people.

Yesterday as I was waiting in the long line of people waiting to have their lab tests, a woman who was standing next to me was obviously terrified because she was apparently new to this rodeo. We talked for a while, and I tried to reassure her that the nurses were incredibly kind, and that once she got used to the drill, the whole experience became less of an ordeal. How my life has changed since I began this odyssey! I was that woman; I remember my first chemo day. Not knowing what to expect, we decided to prepare for everything: a list of questions, my laptop computer, a book, gloves if my hands got cold, my Minion blanket, nose spray for stuffiness, lip balm, lots of treats because who knew what I would feel like eating, and lots of nerves. My how far I've come in this trek: now I take my laptop, a few snacks, lots of patience, and most importantly, my anti-nausea pills.

After that as we were waiting to be called back to see the nurse practitioner, a man sitting across  from us started up a conversation about the truck crash that we had seen as we were getting close to the hospital. He then launched into a diatribe about people using cell phones. However, when he started talking about ladies with cell phones, he got crankier and crankier, and I just smiled, tried to be polite, and did an internal eye roll.

When I walked back to get my infusion, there was an older gentleman using a walker with wheels. He was wearing a silly Halloween hat that lit up, and that made me (and everyone else) smile as he jauntily scooted his way back to the infusion area.

As I watched these 3 different people, I once again became aware of how versatile and caring the nurses are as they deal with numerous patients who have different and wildly varying personalities, different cancers, and different needs. Since most patients have several different chemo drugs administered during the treatment, the monitoring of the different chemo treatments is critical; if one nurse is dealing with Patient A and the timer for Patient B goes off, another nurse will step in to make sure that patient is cared for in a timely manner. Their team work makes them a pretty well oiled and caring team.

--Random thought #2:
During the past couple of weeks I have run into a number of my former students (from the Class of 81 through the Class of 97). Interestingly enough, most of them asked me what is really going on in public education—and without my prompting, most of them had concluded that the bottom line was about one money making scheme or another.

All of them were pretty typical students when they were in school, but the one thing that came through with all of them was the importance of the relationships that they built while they were in school. The other thing that came through was the value of neighborhood schools.  Interestingly enough, since politicians have taken control, the focus is never on the importance of relationships to learning and to growing up but rather on test scores and other dubious methods of measuring what is important.

--Random thought #3
When I was struggling to write this yesterday, one of my friends said, “Why don’t you write a love letter to the Cubs?” I thought about this for a while, and then it occurred to me that I would rather write a love letter to all of the people and things in my life for which I am grateful. However, I decided to save that letter until I finish my chemo treatments, and that will truly be my love letter to the world.

--Random thought (and quote--just because I like it) #4

Running on Empty

I usually write my blog while I am having my chemo infusion; however, yesterday I was too tired to have a coherent thought, so I chased a bunch of zzzzzzzs throughout my treatment. I seriously considered using toothpicks to keep my eyes open.

Part of my exhaustion was due to trying to fit in too much activity with my limited energy. Back in August, I asked my oncologist if I had his okay to attend the NPE (Network for Public Education) conference in Oakland in October. His only restriction was that I made sure that I kept my hands washed. On the flight out to San Francisco, I wore latex gloves, but by the time we got to Oakland, I was getting a bit tired of people staring at my hands, so I deep-sixed the gloves. However, due to the fires that were blazing in Santa Rosa and in various and sundry nearby areas, the air in Oakland left much to be desired for those of us whose systems are immune-compromised. So I limited my time outside, and I wore a mask when I did have to leave the hotel.

Needless to say, the conference was well worth the time and the exhaustion of traveling through 3 time zones and experiencing new sleep(less) patterns. Seeing old friends and meeting new education activists was energizing and hopeful. In this brave new world of education privatization, it is easy to become dispirited and frustrated, and yet the keynote speakers were engaging, inspiring, and thoughtful, and they gave me hope that together we can be the voice of reason and the change that we want.

There were lots of highly emotional moments for me, and many of the people who were aware of my cancer schmantzer odyssey said very kind things, which was both lovely and embarrassing. When Diane Ravitch introduced me and the other NPE Board members, I got more than a little choked up that someone whom I have respected and admired for so long said such personal and kind things about me. Holy cow!

However, the trip home was beyond exhausting. We took the train (aka the BART) to San Francisco airport, trying to balance our suitcases while being squeezed in between lots of commuters. From there we flew to Dallas, where we ran into more exhausting frustrations. We flagged down an airport cart driver to take handicapped travelers to their gates, and we asked him if he was going anywhere near our gate. He said that he was, so we hopped on. We have always taken the tram to get from one gate to another, so I have no idea why we chose to ride in the cart. Obviously, our tired brains were in a fog, but we eventually spotted the SkyLink tram and got to our gate just in time to board.

Among the many things on this trip that I learned through random conversations with people who have experienced similar health issues and other unspeakable tragedies is that our culture does not give us the language to deal with unexpected life twists or tragedies.

• Some people send links that include every possible horror story imaginable. Umm, not sure I needed that.
• “I don’t know how you are dealing with all of this.” Umm, I didn’t know that I had a choice.
• “Don’t take that chemo. No one ever comes out alive.” Umm, thanks for the encouraging words.
• Some folks avoid me because apparently they did not get the memo that I am not contagious.

Fortunately, there are friends who are not afraid to ask me specific questions or to offer specific help which tells me that they still see me as a person and as a friend and not as a victim.

Despite my exhaustion and frustration from this energy depleting trip, I am glad that I went to Oakland. It was good to be with other people who care about kids and who are willing to fight for the them.

This whole weekend was somewhat surreal.  Due to the nearby fires, the beauty of the Bay area was masked by the smoke from the fires. Reading all of the "me, too" comments on social media raised my awareness of how pervasive sexual assault really is. Realizing that our government has not yet done much to help our citizens in Puerto Rico is dispiriting and depressing.  However, it is good to know that previously unengaged people are beginning to get engaged because it has become apparent that there is an assault on nearly everything we have taken for granted.

All in all, the conference gave me the WILL to carry on with the activism that I have been engaged in since 2011. Obviously, I do not know how my story will end, but I do know that nowhere in the text will it ever read..."I gave up."

Reaping the Whirlwind

The past two weeks have been a whirlwind of highs and lows. I have been incredibly busy, watching the Cubs win their division, traveling to Indianapolis, going to an amazing class reunion, and fielding enough phone calls to make me feel like Lily Tomlin's infamous telephone operator, Ernestine. While all of this has been busy and exhausting, life continues and so do I.

In my last post I mentioned  all of the frustrations of my port and its access to the blood return. So my oncology  team decided that I needed to do a CT dye scan to see if there were  problems with my catheter. As soon as the techs saw the scan, they noted that the catheter had a loop in it, which was causing the issues. When things go belly up, I often figure it is because I have done something dumb, so I asked them if my working in the yard could have caused the pick line to loop. The nurses told me that unless I was moving boulders, that was highly unlikely. Of course, I didn't tell them about my Sisyphean desire to fix all that is wrong in the world.

After numerous calls between my doctor and me, we finally decided that my port needed to be replaced, and they quickly tried to schedule this minor surgery in short order.  I was able to have my port replaced on Monday. In the meantime, since I am now half way through my treatments (7 down, 5 to go), I had yet another CT scan on Friday to see if the chemo is working.

All of this caused this past weekend to be a rather stressful weekend where I lost my faux-Zen and started to imagine the results of what might lie ahead. When I talked with my doctor on Tuesday morning about what the scan meant, he  said that there was nothing that he could see that raised his concern about my CT scan. Even though I was hoping that he would say, “We were just fooling...all is well,” I was reasonably sure that that would not be the case. Apparently, my cancer  is being treated as a chronic condition for now...and I can live with that.

Even though I have steeled myself against the worst possible outcome, the past couple of weeks with all of its ups and downs have been quite draining. While I have been preparing for the worst, the most trivial of things  bring on unexpected emotional breaking points.  A few days ago in the midst of my whirlwind of activities, I stopped to drop off some dry cleaning at the place where I have gone for almost 30 years and saw a sign that they had gone out of business. Seeing this unwanted bump in the road, Donna and I were on the brink of crying. On top of that, Zesto Ice Cream is now closed for the season. Sadly, it is the small things that are most likely to drive us over the edge. 

I have been dealing with cancer schmantzer for over 6 months, and yet I am still blown away by the fact that life can turn on a dime. So many people have been affected by both natural disasters and man-made massacres. Who knows what the reason is for any of the heartaches which lie before us? Whether it is disease or climate change or random acts of violence, it is important for us to recognize that we are good people, and the humanity within most of us causes us to reach out to do whatever we can to show kindness and love to one another.


In the words of Stephen King, 11/22/63

Just Another Manic Monday

Yesterday was my chemo day, and since it was a Monday, I had steeled myself for the frustrations that Mondays often bring. On Sunday I went to my hospital's satellite lab, hoping that by having my labs done early, I would avoid having to wait for the lab results. After I had my appointment with the nurse practitioner, she told me that my numbers look good, and she said that because I have reached the halfway mark in my treatment, my doc was scheduling an abdominal/pelvic scan for me before my next chemo. So that was good. 

As I was waiting to get called back for my infusion, I had a conversation with a woman sitting next to me in the waiting room about the randomness of the side effects. She told me that she also has colon cancer, and I was happy to hear that her neuropathy had gotten better. I asked her how many treatments she had had. She said 16 so far, and I told her that I have completed 6 of my scheduled 12 treatments. I asked how many she had left to go. When she said, “For the rest of my life--if I want to live” was one of those random, unsettling occurrences that made me feel as though I had been bitch-slapped. While that may or may not be the case for everyone, that certainly is not what I needed to hear, and maybe that was her interpretation but not exactly what the doctors said. However, that set the tone for the rest of the day.

Much to my chagrin, for the 4th time in a row, the nurses had difficulty getting the blood return on my port to work. Despite their gallant efforts, they once again resorted to using a “clot buster” so the chemo can be infused through my port. The purpose of these meds is to get the blood to flow so that the chemo can be administered through the port. Otherwise, if they tried to put the chemo into my veins peripherally, it would be too harsh to infuse through my veins. While they were trying everything to get the port to work, I reverted to a state of silent resignation while I could tell underneath her quiet demeanor, Donna went into a silent rage of frustration...not with my health care team but with all of the random frustrations that both we and my care team experience together.

After messaging with my oncology team, the good news is that they are considering running a routine test using a dye to see if they can figure out why the port is not functioning efficiently.

I am always struck by all of the random ironies that surround me. This time I had my chemo in the “sun room,” the irony being that it was rainy and dreary this morning. 

My lab numbers show that despite the fact that cancer has invaded my insides, I am relatively healthy.  I am also annoyed that after a lifetime of exercise and working out, along with the 30 pounds that I have lost, I have lost most of my muscle mass. 

Looking around at the people who are there for treatment, there are so many who are in worse physical shape than I am; I hope they have a  kick-ass support team of friends and family that I have. It is patently obvious that cancer does not care about who you are or how much you own or what your political or apolitical point of view is. 

Cancer does not care whether you are a warrior or a wimp, so I am slightly astounded when people marvel at my positive and philosophical attitude. I am neither courageous nor heroic. I could curl up in a fetal position and curse the sun, the moon, the stars, and the rain, but I have chosen to put one foot in front of the other and to do my best to get through each of the new random indignities that cancer has dealt and will continue to deal to me.

I am still the same person that I have been all of my life, and I will speak up and speak out about the injustices that I see around me.  I will continue to be a rat terrier nipping at the heels of those who need to be reminded that they need several doses of kindness, honesty, and decency....and maybe a terrier to bite them in the ass will help to remind them.

...and thus, today begins my latest cycle in my cancer schmantzer odyssey: 
                     I will wake up and kick ass and get on with my life.