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 
  • Ark Animal Rescue, P.O. Box 131, Howe, IN 46746
  • Matthew 25 Health and Dental 
  • Community Harvest Food Bank
  • Habitat for Humanity 
  • Planned Parenthood   
  • Cancer Services of Northeast Indiana                   
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.

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'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.