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.

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.

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.

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."