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."

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.

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!

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.