Tuesday, December 12, 2017

Chemo Count-DONE

While I am extremely passionate about things that are important to me, I am rarely emotional. Consequently, I have been relatively stoic since my cancer schmantzer odyssey began.  My LAST chemo treatment was on Monday, and most people would have projected that I would have been bouncing off the walls with happiness.  However, that was not the case. A week and a half ago I was going to run some errands when I got into a fender bender a few hundred feet away from my driveway.  While I wasn’t hurt in the accident and I have no cuts or bruises, my seat belt pulled tight and did its job. However, my car certainly was hurt, so the insurance company decided that fixing it would not be worth it. Even though it was just a car, we had had a long history of 19 years together, and I felt like crying every time I looked at Yellow Bird’s crushed right fender.  Yes, I name my cars.

Practically, it wasn’t hard getting into Yellow Bird;  I simply opened the door and dropped my rear end in the seat, but the older we have both gotten, the more difficult it was to get out of the car in a seemly manner.  However, now I will be forced to buy a more age appropriate car, but one that still has some feistiness. I am sad to lose my sweet, little car.


Moving right along, I had a scary balance issue a few nights later. I didn’t feel dizzy, but my body felt totally out of control where I felt like Linda Blair in the Exorcist.  Thankfully, my head wasn’t spinning, but I grabbed for my bed, for the dresser, for the wall, for the bathroom sink to try to retain my balance, and then I propped myself up on my bed the rest of the night wondering what had just happened. 


The next morning I contacted my doctor’s office, and we concluded that more than likely, this episode was caused by one of the more potent chemo drugs, so we decided to discontinue that for my last treatment.  All of a sudden, it made sense that every time I have an appointment, one of the first questions that  the nurses ask is if I had fallen since the last visit.  

I usually chalk up these side effects as yet another in the long list of ingredients in the crap sandwich that life has dealt me this year.  However, when life puts issues on my menu that I do not understand,  getting information and facts help me put things in perspective.  Thankfully, my oncology team always shoots straight with me.

Yesterday was my LAST chemo treatment.  I have to admit that I felt a sense of trepidation and anxiety as we got closer to the hospital. I have been doing my chemo countdown since July, and now all of a sudden, I started to worry that my doc was going to give me news that I didn't want to hear.  However, after he had looked at my lab work and answered all of my questions, he told me that he plans to treat my case as a chronic condition (rather than a death sentence).  He told me that I would need to make an appointment in March for a PETscan, and we would go from there.  GREAT NEWS!

Through all of this, I have learned that the people who work in oncology are a special breed of human beings.  They are strong and competent and kind, and even though I know that their jobs are stressful, they always made it a point to treat me as a person, not just another case. Yesterday as I encountered each of the nurses who has cared for me, they gave me high fives and hugged me.   Even though I am glad to be finished with this chapter of my life, I will miss these kind and caring people.

As I was getting ready to leave, the nurse who had administered my final chemo handed me a note from the care team and a cake from all of them.   Although my nurse navigator was unable to be there yesterday, she made sure to leave me a note and gift to let me know that she was thinking of me.

While I am still slightly choked up from the events of this past week, these caring gestures are the best Christmas presents ever.

On that note, Merry Christmas, Happy Holidays, Seasons Greetings, Happy 2018, and all good wishes to all of you who have followed my crazy journey.










Tuesday, November 28, 2017

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


Saturday, November 18, 2017

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.


Friday, November 10, 2017

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



Tuesday, October 31, 2017

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

Wednesday, October 18, 2017

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."




Wednesday, October 4, 2017

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








Tuesday, September 19, 2017

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.






Tuesday, September 5, 2017

Side Effects and Other Things

While I have never been known for my patience, in the world of “my new normal,” I am beginning to learn that patience truly is a virtue, especially for stubborn folks like me.

Typically, my chemo day drill starts with getting lab work done at 7:30, seeing my doc at 8:30, then waiting for the pharmacy to make up the chemo cocktails; I then get hooked up to a chemo pole for anywhere between 5 and 7 hours.  However, for my past few treatments, the difficulty with accessing my port has given Job (and his patience) a run for his money.  This morning my blood return was not working, so we went through various and sundry contortions of lying on my side with my arm extended over my head, followed by leaning over to touch my toes; I am now fully ready to gyrate to a few verses of YMCA at the next wedding that I attend.  Always willing to be helpful, I suggested to the nurses that they might want to bring out a trapeze so that the port could be more easily accessed. Fortunately, after numerous machinations, they were able to access my port.  Thus, my new normal seems to be yet another chapter of hurry up and wait.

Before my diagnosis, I assumed that cancer would be painful, but I have found that it is not. However, the unpredictability and the randomness of the side effects are another story. My sensitivity to cold has become more challenging than I would have thought. If the weather is chilly or if I want something in a glass jar from the refrigerator, I need to wear gloves. Much to my dismay,  I was shocked and somewhat bummed the other day as I was trying to bake a cake. I cracked the first egg, but my fingers were so tingly and cold sensitive that I couldn't hold the other two eggs long enough to crack them. As a person who has always been independent and able to do everything by myself, it was very dispiriting to have to ask for help to crack an egg, and yet the random annoyances and indignities keep on coming. All in all, it's just another brick in the wall.

However, I am heartened to know that the people in my world are kind and caring. Since my whole cancer schmantzer odyssey started back in April, I have been touched by the kind words and actions of family, of friends, of former students, and of strangers.

With all of the divisiveness and horror in the world coming at us from all directions these days, it is good to know that one of the unexpected side effects of having cancer is to be reminded that most people are good at heart.

That is why it is so difficult for me to understand those who wring their hands and offer thoughts and prayers for the tragedies that seem to be coming at us daily at warp speed. Rather than offering empty platitudes and rhetoric which signify nothing, I wonder what will it take for us to press our legislators to enact policies and legislation that will demonstrate that they are as good as their constituents?

Do they not see the goodness and kindness of the people who are reaching out to help one another?

Do they not understand the words of Anne Frank?
             
                     Despite everything, I believe that people really are good at heart.

Disasters, diseases, and tragedies make the world a more level playing field.   Like it or not, cancer does not care whether you are rich or poor, old or young, and it creates a level playing field. My oncology team is doing it best to stave off the cancer that is in my body.  If only we could all work together to create policies to stave off the cancer that has invaded our body politic.

Sunday, August 20, 2017

Chemistry Sets, Side Effects, and Curiosity

When I was in elementary school, one of my favorite toys was my Gilbert Chemistry Set. I don’t remember much about it other than that it was housed in a nifty blue steel case, and there were test tubes and who knows what chemicals. My scientific experiments usually took place on our garage floor as my friends and I followed the directions for exploding stuff and for making secret potions. 

Holy cow!


As I look back, I am more than slightly horrified; however, when I was growing up, there were no such things as seat belts or safety helmets or other things which we have come to consider to be essential to keeping kids safe.  One of the most important badges of honor in grade school was to be the first kid each spring to come to school in a cast because of crashing a bike on one of the dangerous park paths. While I am sure that my parents must have been worried sick over some of my feats of derring-do, they never projected their fears on me. In fact, I cannot remember being afraid of much of anything.

I am very aware of the possible consequences as I travel through my cancer schmantzer odyssey, and most of the time I am neither fearful nor am I courageous. Much like my scientific experiments, I would consider myself curious, trying to figure out how to deal with what may lie ahead. After my first two chemo treatments, I had some short term neuropathy, which caused my fingers to tingle and which made me sensitive to cold. Much to my chagrin, the sensitivity to cold has now increased, so if I want to take anything out of the refrigerator, I either have to wear gloves or have someone to get it for me. This also means no cold drinks or cold foods unless I want to experience shortness of breath and choking.

In addition to all of the above, I have discovered that since my surgery in May, I have become semi-lactose intolerant. At first, I was dismissive of the lactose intolerance because I could eat cheese and other milk based products, but I am learning which lactose-containing foods might be bothersome. Sadly, the double whammy of cold and lactose has made having my occasional visit to Zesto (for ice cream) an impossibility.  This could be a good reason to create a 10th Circle of Hell.



When friends ask how I feel, I liken my experience to the As Seen on TV ads for the Clapper. 

Clap on! The week after my treatment,  I feel pretty doggoned good.
Clap off! During my chemo week, I am learning how to manage the nausea and fatigue.  

Obviously, cancer schmantzer would not have been my first choice for my life options; however, it is the hand that I have been dealt. 



As a certifiable control freak, I have come to the startling realization that much of what happens is not in my control.   

I can choose how I will respond, and I choose to be curious and unafraid.


Saturday, August 5, 2017

Birthdays and Other Things For Which I Am Grateful

To give a little context about my view of birthdays, my mother made a major deal out of birthdays. I never much cared about birthday cakes because my mom baked both a rhubarb and apple pie for each of my birthdays. For whatever reason, she loved planning  “surprise” parties for me, and as an ungrateful kid, I complained about how I didn’t like surprise parties until I got really surprised when there was no surprise party, and I moped for most of the day. So birthdays have always been a big deal to me.

Given my current cancer schmantzer circumstances, my birthday on August 7th marks one more journey around the sun for which I am quite grateful. Originally, my 3rd chemo treatment was scheduled for Monday, but since I had no intention of spending my birthday hooked up to IVs, I rescheduled for the next day. 

The good news about Round 3 is that I am learning how to cope with all of the new stuff that has been happening. As much as I hate taking meds, I have finally realized that I need to be pro-active about taking the meds if there is even a hint of nausea. I now keep gloves by the refrigerator because sensitivity to cold (which feels like sticking my fingers into an electric socket) follows for few days after a treatment. I have also learned that it is okay to feel like a slug for a few days after each chemo treatment.

Since today's blog is all about me and my gratitude for yet another year to wreak havoc and to raise awareness,  if you want to do something to help me celebrate my birthday, here are some suggestions.
  1. Write a letter to someone you love (family or friend or whoever is important) letting them know why they are important to you.
  2. Register to vote. Then do your homework about the issues. Find and support candidates (both financially and energetically) who most closely reflect your values.
  3. Write letters to the editor about issues that are important to you.
  4. Talk to someone whose world view is different from yours with the intent of listening and understanding.
  5. Donate to a cause that is dear to your heart. Here are some of my favorites:
  • Network for Public Education https://networkforpubliceducation.org/about-npe/donate/ 
  • Ark Animal Rescue, P.O. Box 131, Howe, IN 46746
  • Matthew 25 Health and Dental http://www.matthew25online.org 
  • Community Harvest Food Bank http://www.communityharvest.org
  • Habitat for Humanity https://www.habitat.org 
  • Planned Parenthood https://www.plannedparenthood.org/health-center/indiana/fort-wayne/46804/fort-wayne-health-center-2907-90500   
  • Cancer Services of Northeast Indiana http://cancer-services.org                   
Do something unexpected and fun. 
  • Go to the zoo
  • Play miniature golf
  • Go to a playground and try out the monkey bars (or zip line)
  • Go to Zesto (or any ice cream shop) and treat a kid to an ice cream cone
My mother instilled my love of birthdays and my love of celebrating the passages in my life.  When I was young, the goal was to open as many presents as possible. This year I am grateful for all all of the lovely people who have touched my life in ways both large and small and for the kindnesses that I have experienced.  I am grateful for all who have made me smile.

In the words of Elinor Wylie, "In masks outrageous and austere, the years go by in single file; but none has merited my fear, and none has quite escaped my smile."


Sunday, July 30, 2017

Back to School Thoughts...


While I was trying to think of an update for my latest blog when I ran some errands yesterday, my thoughts drifted away from cancer to my old Back to School thoughts. I seriously prefer defining myself as a teacher rather than as a person with cancer.

Back in the olden days, whenever I heard the cicadas or saw the lawn furniture being replaced by school supplies in most retail stores, I knew that the end of summer was around the corner, and I knew that it was time for me to take in the smell of freshly waxed floors at school, to get back into my classroom to hang new posters, to re-arrange the desks, and to get new lesson plans ready.

While I always tried to mix things up with my lesson plans, I always started every school year the same way. If my room was large enough, I placed the desks in a circle or a semicircle, and I had the students introduce themselves with this: 
My name is ---- and I like this.  Then the next student introduced himself, repeating the intro from the previous student and so on. By the time we were finished with the exercise, not only had every student spoken, but the class had loosened up and had some little factoid to help identify everyone in the class. 

The benefit of all of this was that it set the tone in my classroom, and by the end of the first day, I knew and remembered the names of about 99% of the 150 or so kids on my class lists. As I stood by my door the next day to welcome students each period, I greeted each of them by name. While this may not seem like a big deal, it helped establish a positive climate in my classroom.

The point of establishing a positive climate in my classroom was pretty simple. Each of us wears an invisible sign that says I Am Lovable And Capable, and as we go through our daily lives, little pieces of our signs are slowly ripped away by the comments and actions of others. My goal each year was to get to know each of my kids and to find ways to instruct them  without demeaning or tearing away at their signs. For example, if a student didn’t understand a concept or an idea or whatever I was trying to teach, I would go to Plan B to see if I could find a better way to explain. Sometimes when I felt as though I was banging my head against a wall, I would ask if someone had a better way of explaining, and most often they did....and I would ask that student to come to the front of the room to help me.

Those who want to fix teachers and kids seem to forget that all of the testing and all of the online learning and all of the latest technology and all of the moronic plans of those who have no idea about what is instructionally or developmentally appropriate have little to do with children. While it may seem quaint now, teaching the whole child works. Children come from all kinds of backgrounds and conditions, and teachers need to be mindful that until we figure out who that child is and what he/she really needs, all of the technology in the world will do little to change that. Regardless of how tough or world-wise kids may act, they are still children. As a case in point, my classes always had weekly SAT and Words of Power vocabulary quizzes. After we graded the quizzes, I told the students that anyone who got 100% could have a sticker. While that seems pretty juvenile, most kids were eager to get their stickers, especially the AP students.

All of this goes to the  point of what is currently being done to students in the name of reform.   Do we really need to make our children college and career ready for jobs that will probably be obsolete by the time they are out of school? Perhaps, we need to teach students to learn how to learn and to learn how to think critically rather than robotically.

I am profoundly saddened by a world that is all too ready to tell our children where they fall short. All of the technology in the world will not fix a broken child, but kind and caring adults are a good place to start.

Sunday, July 23, 2017

If It's Not One Thing...

In the words of Roseanne Roseannadanna, “If it’s not one thing, it’s another. It’s always something.”  Such is the course of my cancer schmantzer odyssey.

I sailed through chemo two weeks ago, and despite being tethered to my chemo fanny pack for two days, I was feeling pretty optimistic.

Because I have had digestive issues and their accompanying queasiness for years, when I started to feel a bit queasy the day after chemo, I didn't take it seriously.
BIG MISTAKE!

By the time I decided that I had better begin taking the anti-nausea drugs that had been prescribed for me, it was too little, too late, and thus began my quest of trying to figure out “my new normal.”   As a child, I used to look forward to visits from the Tooth Fairy. Without going into too much detail about my obsession with my ever-changing bodily functions, suffice it to say, a visit from the Poop Fairy was the highlight of my last two weeks.

Among the things that I have learned along the way is that Fort Wayne has excellent resources for cancer patients. I have already taken advantage of a free massage at Cancer Services of Northeast Indiana, and I have made appointments to check out the exercise and wellness programs that both Cancer Services and the LIVESTRONG at the YMCA  offer. Fortunately, every day I am made aware of more and more resources that are available.

Among other things that I have learned along the way are that some people find it helpful to visualize what they want to happen during chemo, so I am visualizing that my little army of Pac Men/Women is relentlessly charging around my insides gobbling up cancer cells. I have also decided that as soon as I get home from my next treatment tomorrow, I plan to stay ahead of the nausea. I have also learned that if something doesn’t feel quite right, I need to deal with it immediately rather than overthinking it. As much as I hate taking meds, I am going to slam those pills because I have no intention of toughing out anything. 

Since April, my life has been divided into two separate but unequal parts: life before cancer and life after cancer. The learning curve has been steep, but like Sisyphus, I will keep rolling that huge boulder up the hill.  Tomorrow's chemo is just another Manic Monday....and like Sisyphus, I will rock on!

Tuesday, July 11, 2017

Cubs, Cars, Chemo, and a Few Eventful Days


On Saturday I made my long anticipated trip to Wrigley Field with Donna and the Bush Boys to watch the Cubs play. We expected lots of road construction and delays all along the way, and we were not disappointed. The exit from 90/94 to Lake Shore Drive was a special treat, but the weather was picture perfect all day long, making the slowed traffic much less frustrating. When we arrived at our hotel, we took an hour to chill before we headed to the game.

While my cancer-schmantzer world has been rife with frustration, it has also been filled with unexpected kindnesses. One of those was from a friend who emailed me a few weeks ago to ask if I would like for him to acquire a handicap parking space near Wrigley. Of course, I accepted. Awaiting us when we got to the parking lot was a golf cart, and even better, our driver--who was absolutely hilarious and who kept us laughing all of the way to the ballpark.

The Cubs lost, but as die-hard Cubs’ fans, we have experienced a lifetime of disappointment and despair. Cubs’ fans are a resilient and patient lot...and there is something about being at Wrigley Field that always makes me happy. If worse comes to worse and the season hurtles into too much frustration, I can bust out the video of Game 7 and relive the excitement and cry for joy again.

On Sunday morning, we left the hotel early to avoid the traffic, and we got out of Chicago in record time. Feeling smug and slightly cocky, we stopped for breakfast in Schererville, and when we got back to the car, the tire air pressure light was on. So we drove over to a nearby auto store to see if they could take a look at the tire, but they didn’t have the equipment to do anything and suggested that we use an air pump at one of the nearby gas stations.

IRONY ALERT: Concerned about having a nail in the tire and not wanting to have a flat on the highway, we called AAA, and after about an hour, the tow truck arrived and the driver worked on checking the tires while we were sitting in an auto store parking lot. Even after this delay, we were safely back on the road again by 10:30 and home by early afternoon.

On Monday morning we said goodbye to the Bush Boys and headed to the hospital where I had all of my lab tests, talked with my doctor, and then headed to the infusion (which sounds like something straight out of the Twilight Zone) room. Like everything else that has happened with this cancer-schmantzer thing, there was more “hurry up and wait” until my magical chemo potions were prepared and ready. Fortunately, there were gazillions of checks and balances to make sure that everything was going well and that I was not having any reaction to any of the meds. Because this was my first treatment, the whole episode took nearly seven hours. My super kind and extremely thorough nurse in charge of my chemo told me that I sailed through the whole treatment and didn’t need any extra drugs to control any reactions. So that is a good thing. Shortly after we got home from the hospital, a home health care nurse came over to make sure everything was working right with my pump and to finish all of the administrative paper work.

At this time, I am happy to report that I haven’t had any unusual side effects so far that would give me a shot at making it into the Guinness Book of World Records. The bottom line is that I am pretty exhausted—both from the day and from our busy weekend with the grandkids.

Throughout this whole odyssey, I know that there are life lessons to be learned. While I am working on learning patience, I am still deficient in that area. However, there are lessons that keep being repeated on a daily basis. The doctors and nurses on my oncological team have been remarkably thoughtful, kind, and concerned about my well being, and my family and the friends in my life have been surrounding me with healing energy, kindness, support, and most of all, with love....and it doesn’t get much better than that.

Thursday, June 29, 2017

Side Effects and Other Things

Yesterday brought forth a new chapter in the annals of Cancer Schmantzer.  During the last few days, I have begun to feel like my old, pre-surgery self.  What has been especially good is that I have expanded my culinary delights to include some flavors beyond potatoes, rice, pasta, and other sick person fare to include items with flavor, and that has put me in a much better frame of mind.  

On top of that, the sun has been shining, and I have even started cleaning out some closets....not in my usual manic, crazy-go-nuts-get-it-all-done-in-one-day fashion, but rather in small spurts of sorting and tossing out clothing that I no longer wear.  There is much yet to send to Goodwill, but for now I am giving myself a Bozo button for color coding and arranging my shirts and t-shirts.

Because I have been feeling especially good for the past few days, visiting the education nurse for “chemo education” was more than a little surreal.  As we sat down in her office for an hour, she went through pages and pages of information about what will be the course of treatment and about what I need to expect.  Throughout the meeting, she answered my questions and concerns.  

As she was enumerating some of the scary possibilities,  it was hard not to think of all of the gauzy ads for miracle drugs that are constantly advertised on TV with the before-and-after scenes of life-changing improvements accompanied by numerous terrifying side effects. I am well aware that some of these terrifying things may happen, but most will probably not.  Interestingly enough, I felt surprisingly calm as the nurse explained how carefully my chemo team will be monitoring how I respond to each treatment. Rather than mixing the different flavors of chemo together in one magical elixir, the medicines will be delivered separately to check how well I tolerate each different form of chemo.  While all of this may seem quite scary, I always find that the more I know and understand, the better I can deal with whatever hand is dealt to me.

My first treatment will last for about 5 hours, and when I leave, I will be hooked up to a handy dandy fanny pack filled with more chemo to be infused for another 46 hours.  I will then repeat this regimen every two weeks for about 6 months.  Merry Christmas to me!

Of course, I know that my fatigue level will increase incrementally, but I also know how important it is for me to stay as active as possible, and I plan to do so. I asked the nurse if my goal of playing at least 10 minutes of tennis this summer was doable.  She said that it is, but I might want to adjust it to 5 minutes.

Our eyes were slightly glazed over at the possibility of what lies ahead. However, in the wise words of Donna:  We ain’t got no time for any stinking side effects.

Anyone for tennis?

Wednesday, June 14, 2017

Not So Brave

Ever since I started writing this blog, both friends and acquaintances have been telling me how brave and how courageous I am.  All I have to say is this--not so much.  

Words that I never thought would come out of my mouth are that I have been having difficulty getting my appetite back.  Apparently this is pretty typical after major surgery. Along with that, some friends seem to think that cancer is causing me lots of pain.  Interestingly enough, I have been asymptomatic and pretty much pain-free since the beginning of this nightmare. The closest thing to pain that I have experienced is that it is difficult to get comfortable.  I bounce from the chair to the sofa to the bed in an effort to find a position where I don't feel like I am channeling a wiggly first grader.  

Ever the good student and teacher pleaser, when one of my docs told me to make sure to get enough protein before I start my chemo, I decided that a very high protein drink would be a good solution. On Friday I drank some of this protein potion, and  I followed it up with more on Saturday.  Much to my dismay, the result was that I felt as though someone had blown up a beach ball and stuck it in my gut, and I was miserable.  Consequently, I only ate bland foods on Sunday in order to get my system settled down, and I started to feel much like myself again and like I was back on track.  However, on Monday a few bites of yogurt made me feel sick to my stomach.  

After two days of feeling as though I had been run over by a truck,  all of my bravado and derring-do went right out the window as did my self-confidence and my fighting spirit.  I thought to myself, “If I am scared to eat much of anything, how I am going to face the vicissitudes of chemo?   How I am going to face the lack of energy and the fatigue? How am I going to do all of the things that I want and need to do?”  
This new reality was a frightening slap in the face as I started questioning my own strength and my own resolve and my own willingness to keep fighting.  

The good news is that after yesterday's visit with my oncologist and with a dietitian, I was reassured that everything that I have been experiencing both physically and emotionally is pretty common, which was a huge relief. My chemo treatments are scheduled to begin in a few weeks, and  that will give me more time to heal from my surgery.  The better news is that if I feel up to it, I will be able to take my grandsons to see the Cubs.

All of this is to say that my first goal will be to build up my strength, endurance, and appetite enough so that I can accomplish that.  I will be setting smaller daily goals of increasing my time on the treadmill and walking a little farther to meet  Donna when she walks the dogs each day.  I plan to add more foods (gradually) to my diet to test out what I can tolerate.  

The bottom line is that this patient needs to learn to be patient and to adjust to my new normal.   Baby steps...it's all about baby steps.

Wednesday, June 7, 2017

Today's Not-Too-Deep Update

Throughout this whole cancer schmantzer odyssey, I have found that it is a fool’s errand to anticipate outcomes; consequently, I have learned to expect the unexpected. Yesterday on the drive to my appointment with my gynecological/oncologist, we joked that she might say, “We were just fooling. You are outta here.”

While that would have been nice, it wasn’t to be. My doc explained in detail with a lot of big cancery/medical words about what she had found during my extensive surgery. Apparently, my surgery was much more involved than I realized.

After we discussed the entire pathological report, I asked my doc some not so scientific but very practical questions. The good news is that I can start taking baths instead of showers, I can sleep on my stomach, and I can drive again--as long as I can brake quickly. Since I have been managing to drive the electric grocery store carts, I figured that driving my car would be a piece of cake.


Among other topics of importance to me, I asked the doc if I would still be able to take my grandsons to a Cubs’ game that we have been planning to attend in July. She said that she thought I would be able to do that but that I should have a back up plan just in case. When I asked her about my chances for survival, she said that while this stage 4 cancer is incurable, it is most definitely treatable. She said that most of her “chemo girls” begin to feel better and stronger once their chemo has begun. I can live with that.

Interestingly enough, she told me that my case had gone before the tumor board again—a record 3 times—and she asked all of the docs some hard questions about whether or not they should proceed with chemo, and they all agreed that this looks treatable. Right now it looks as though my chemo treatments will be different from the original plan. I gathered that my oncologist will probably want to start the chemo as soon as possible. As long as my oncological team thinks I am healed enough to begin, I just want to get on with this.

On the way home, Donna asked me how I was feeling both physically and emotionally. Physically, the site of the incision is still pretty tender and slightly uncomfortable. Emotionally is a different story. This whole magical mystery tour has been going on since last September, and at this point, I feel slightly exhausted and overwhelmed. Having said that, I try to make it a point not to feel sorry for myself or to play the victim, and while my current situation is not one I would have chosen, I will deal with it in the way that I have always dealt with whatever shit-storms come my way. I will put one foot in front of the other, I will set small goals each day, I will continue to appreciate the friends and family who have offered me so much love and support, and like Charlotte Emory (the main character in Anne Tyler’s Earthly Possessions), I will keep on truckin’.

Given how screwy and unpredictable my case has been, I fully expect my oncologists to be in the running for a Nobel prize for medicine, and since I have total confidence in them both as physicians and as caring human beings, I hope they start engraving that prize very soon.

Sunday, May 28, 2017

When You're Down and Troubled...

I had major surgery on Monday, May 22nd so that my oncological team could try to find the elusive origin of the cancer that is lurking around in my body parts.   In spite all of my bluster and bravado about my kicking cancer’s ass, right now I am in the midst of having had my ass kicked pretty badly....and I have to admit that I have become quite the weenie. 

As many who know me have said, “You have never done things the easy way.”  Of course, this cancer journey has been no exception.  As I mentioned in an earlier blog, my greatest fear is being helpless and dependent, and that is pretty much how I have felt since Monday.   I now have a Frankenstein cut from my navel on down, which most likely will limit my bikini wearing possibilities for this summer.  Even with the ugliness of this incision,  my inability to use my core muscles has made daily functions nigh on impossible.  Daily activities--turning over in bed, trying to get disentangled from IVs, trying to get out of my hospital bed, trying to do anything involving those core muscles--have become a near Sisyphean ordeal.   Despite my apparent setbacks I am getting better one day at a time.

Nevertheless, the caregivers at Parkview were helpful, kind, and encouraging.  My family and friends have been helpful and kind and encouraging.  Their collective, nameless acts of kindness and love are what are helping to propel me through this dark period where I have been nearly totally dependent.

However, the point of this blog is to thank Donna Roof. She has been and continues to be my angel of mercy. She has been my main caregiver, advocate,  and cheerleader.  She stayed at the hospital with me every night to make sure that I was okay.  She has encouraged me every step of the way, keeping track of my walks and my food intake, and making me come up with daily goals so that I will get stronger.  

My caregivers: Max Quigley, Donna Roof, and
MacGyver (MacG never leaves my side).
In the words of James Taylor, 
“When you're down and troubled And you need a helping hand And nothing, nothing is going right Close your eyes and think of me And soon I will be there To brighten up even your darkest night.”


However, I have had excellent training as a die-hard Cubs’ fan, and I have learned that disappointment and despair are just another day at the ballpark.  

While the score is currently Cancer 1, Phyllis 0,   I am only at the bottom of the first inning, and I have lots of good folks in my corner who are rooting for me.