15 YEARS-I know!! I Can’t Believe It Either!

When I was diagnosed 15 years ago I NEVER thought I would be still here. Today I spent some time thinking about what I can say after all these years. I mean, many of you have read my lists and thoughts about cancer and survival over the last decade and a half. What could I possibly have left to say? Some of you may be thinking, “OMG, hasn’t she written everything there is to write about cancer?” Well…if you are reading this you know me enough to realize that I can always say more. So….here you go:

Pandemic vs Cancer

This year has been hard. I mean, we are living in a pandemic. Let’s just sit with that statement for a minute. There is a freakin’ pandemic and while we all know it will end and hope it will end soon, we have no end date and that is hard. It’s difficult and exhausting and emotionally draining. I know, I am a ray of sunshine!

So why do I bring up the pandemic? Well the feelings many of us have now are similar to the feelings that I had 15 years ago today. When I was diagnosed I didn’t know how I would get through it all. I didn’t even know IF I would get through it. I know a lot of you thought I wouldn’t. I was scared. My pathology report read like a horror novel. I didn’t have an end date and honestly I didn’t ask for an end date because I was afraid the end date would be MY end date. And then during my most difficult time, my own personal pandemic, I got hooked up with some amazing doctors who, by saving my life, allowed me to:

• be there for my children’s milestones . That includes graduations, all of the “firsts” like first time leaving for college, first dates and dances, first jobs, etc. I am beyond thankful that I have been able to see and share so many experiences with my girls. 15 years ago, Emily was 4 years old and I didn’t think I would still be around when she graduated Kindergarten. I thought Sara and Kelly would remember me but Emily was so little and would likely not remember me at all.
• be there for the small moments like taking the girls shopping even when we don’t need anything, saying goodnight, reading bedtime stories, running errands with them, trying to make them feel better when they have a bad day, and listening to their excitement when they have something special to share.
• celebrate 15 birthdays, wedding anniversaries and holidays with my family, go on family vacations including 13 countries and many trips to the beach. 15 years of memories my kids and husband wouldn’t have had.
• work as a school librarian and read books all day-so fun, teach in the classroom again, become a counselor and work in my former teaching partner’s school (thanks for hiring me, Lynn) and finally, return to South Brunswick where I taught so many years ago. I am without a doubt where I belong and along the way, in all of my other jobs, I have made connections with so many awesome people.

You get the idea. I have been around for longer than I thought and have done a bunch of stuff. But it brings me back to thinking about the pandemic. We have seen a lot of footage of doctors being celebrated and honored for their service during the last 10 months and that’s awesome. People are right to honor the amazing things doctors are doing during the pandemic, but doctors going above and beyond doesn’t surprise me. Whether it’s during a pandemic or during my own year of cancer, that’s what doctors do and who they are. My doctors save lives every single day but they don’t just save one life.

When my doctors saved my life they saved my children’s mom. They saved my children’s childhood and my husband’s wife. They saved a daughter, a sister, a friend, a teacher and a counselor. They impacted all of the children I read books to, taught to read, and all of the students and families that I have helped over the last 15 years. Much like the lesson learned by George Bailey in “It’s A Wonderful Life”, these doctors have impact that extends well beyond 40 year old Carol who walked into their office 15 years ago. I hope they know that.

#NoBraDay

This is the 13th day of Pinktober. This is the month that we raise awareness of breast cancer and I honestly have not thought much about it because, I mean, we are experiencing a pandemic and as such, my fear of cancer has been replaced with my fear of Covid. And, yes, I realize there’s a therapy session somewhere in that statement. But then I received a private message on Facebook announcing that today is “No Bra Day.”

I won’t go into all the ways a deadly disease is sexualized or how it’s tied up in a pastel pink bow so it looks pretty . But I didn’t know much about “No Bra Day” so like any educator, I looked it up. Today, No Bra Day, is supposed to call awareness to breast cancer. For those of us who have experience with actually having breast cancer and for those of us with family members who have had breast cancer, trust me, we are aware. Here are all the times I am aware:

(Read at your own risk)

I am aware when I say goodnight to my kids and hope that I can see them grown and happy.

I am aware when I have some physical symptom that I used to be able to shrug off as normal.

I am aware when I get undressed and see the scar that runs from the middle of my chest to under my arm.

I am aware when I hear phrases like “Save the Ta Tas”. C’mon everyone. It’s really not about that. It’s about trying to survive. Shouldn’t the focus be on saving lives instead of “Saving Second Base”?

I am aware when I brush my hair every day and think about when I didn’t have hair.

I am aware when I put my bra on every day and insert a prosthetic. (I did warn you to read at your own risk)

I am aware when I have to pay close to $100 for one bra.

I am aware when I am told by my insurance company that I am only allowed to buy 2 bras per year.

I am aware when I pay out of pocket because, really, two bras per year?

I am aware when I remember that half of my upper body has no feeling.

I am aware when I get a yearly infusion for bone loss, thanks chemo.

I am aware when I have to take a day off for the infusion above because my insurance won’t cover a simple injection-which by the way, is much cheaper than an infusion at the hospital.

I am aware when I see my oncologists (even though I really love my oncologists).

I am aware when I hear of another person recently diagnosed.

I am aware when I remember the children of the moms who aren’t as lucky as those of us who have survived.

Alternate Universe

Day 31 of 31

The universe where the road most traveled becomes the road never traveled

The universe where there are celebrations of love but they must be postponed

The universe where people die but funerals can’t take place

The universe where people can walk in Central Park but now it houses a field hospital

The universe where the mall is closed but the parking lot is open for testing

The universe where I’m more worried about a virus than cancer

The universe where I’m well rested but tired

The universe where I have to stay home but I am desperate to go out.

The universe where become an introvert but I’m actually an extrovert

The universe where my college kids are home but they still have classes

The universe where one daughter is doing research on cells but not in a lab

The universe where another daughter turns 23 but without all her friends

The universe where pharmacists work behind plexiglass but still feel unsafe

The universe where medical professionals attempt to save lives but don’t have supplies

The universe where grocery stores are open but you’re taking a chance

The universe where I explain world events to my mother but she cannot understand

The universe where time has slowed down but it feels more chaotic

The universe where I find new ways to teach but it still doesn’t feel right

The universe where I wrote for 31 days in a row but never knew that I would be writing about this alternate universe.

My Dad

Day 30 of 31

My dad lived with me until I was 8 years old. I was never, and never will be, angry that he and my mother ended up divorced. Honestly, I’m not sure why they ever really got married but I think in the 50s if you were dating someone it naturally led to marriage. Maybe that’s why there were so many divorces in the 1970s? My dad will turn 85 next week and he is one of my favorite people on the planet.

My Dad

I have vivid memories of you taking care of me when I was a little girl and was sick, especially at night when kids tend to get sick-thank you!

I loved cuddling up with you when I was little. I especially loved watching the show, “Emergency”. I recently saw an episode when I was changing the channels and I watched it for old time’s sake. By the way, it’s not that great of a show.

I know you don’t remember, but I’m sorry for that one time I ate the last chocolate chip cookie before you got home from work.

I loved weeding the garden we had in our backyard. Let me rephrase that: I hated weeding the garden, but I did it because I liked spending time with you.

I 100% understand why you left and I never, for one second, thought it had anything to do with me. It is good that you saved yourself from a life with your ex-wife.

I used to get so excited when I knew you were picking us up for the weekend.

I loved sitting backwards in your station wagon on weekend visits. The bonus was singing along to the 8 track medley of hits from the 70s.

When I hear the song, “If You Could Read My Mind” by Gordon Lightfoot, I immediately think back to those car rides. The same holds true for “Hooked on a Feeling” by B.J. Thomas.

I remember you making tuna helper for us when we visited you in your first apartment. When I got older I would sometimes make tuna helper because it made me think of you.

I thank you for not telling Mom that I got drunk in 8th grade.

I love that our Christmas tradition is making mimosas and drinking them together.

When I think of fishing, boats or the Manasquan River I think of you.

You are my go to person for sanity and advice.

When I visit you now I love staying up late and chatting…just you and me…and possibly a glass of wine.

I love that you are on Facebook and you comment in all lower case with no punctuation. I also love that your comments are typically about 3 words, for example “great looking gals” or “hope you’re good”

I love when you leave me phone messages and you start by saying, “Hey, Carol, it’s your dad” like I don’t know who you are.

Comfort

Day 29 of 31

Last night I read Susan Kennedy’s entry entitled, “Comfortable Part I”. She wrote a short list of what makes her comfortable , which has inspired me to create my own slice about what makes me comfortable right now.

What makes me comfortable right now?

The sounds of laughter coming from my adult children

My dog half growling/half barking as she runs up and down the hallway and plays with her squeaky toy

Soothing background music coming from my phone that makes my home sound like a spa

Looking out my window and seeing the white flowers blooming on the branches of the pear tree

The faint sound of cows mooing. I rarely get to hear the cows

Writing while sitting on my bed with what feels like a million soft pillows around me

The smell of banana chocolate chip bread coming from the kitchen

Lessons

Day 28 of 31

If you have read my other blog entries or if you know me in my “real life” you know that I was diagnosed with stage III breast cancer in 2006. During that time and beyond I have learned a lot, although I don’t really think I needed any lessons. Nevertheless, here are some of the items on my list of things I learned during TYOC (The Year of Cancer).

• Life is too short to wear the clothes that do not make me feel good. I now buy the sweater that looks great and costs a little more rather than settle for the cheaper sweater that just looks ok.

• Life is too short to work in a job situation that does not fulfill you. Even if you have tenure, don’t be afraid to make a change if it will increase your happiness.

• Having good health is something I no longer take for granted.

• If I am tired I take a nap.

• I am keenly aware that none of us are guaranteed tomorrow.

• I still live in fear but not in an obsessive crazy way like I did in the beginning.

• Crazy, obsessive Carol makes an appearance when there is an upcoming check up.

• When I am nervous about an upcoming observation I think, “Well, it can’t be as bad as cancer.”

• It’s really hard to ask for and accept help when you are typically independent.

• It’s ok to ask for and accept help, even if you are typically independent.

• Having hair is 8 million times better than not having hair.

• When things don’t go well for me, I know from personal experience that it could be much worse. I mean, it could be so much worse.

• If a doctor schedules an appointment for you on a Sunday there is probably something major wrong.

• If a doctor schedules an appointment on a Sunday make sure you take someone with you.

• Never wear a shirt you love to a scary doctor’s appointment. If you end up being diagnosed you will never be able to wear it again because it will change from “the shirt you love” to “the bad luck cancer shirt”. Also, you can’t give the shirt away because you will be concerned that the person who ends up wearing it will get bad luck too. All of that means that you have to throw the shirt in the garbage, even though you used to love it.

• Aging is a high class problem.

• All the crap I went through is a fair trade for seeing my children grow up.

• Stage III breast cancer has a much lower survival rate than Covid 19.

Be A Debbie

Day 27 of 31

I had a friend named Debbie. She wasn’t a super close friend but our friendship was created when we had toddlers. She had three children and so did I. Several of us, the stay at home moms, would get together for playdates. It’s funny that we scheduled these playdates for our kids because as toddlers they mostly engaged in parallel play. I think we all knew on some level the playdates were really for the moms. Debbie and I would often hang out together during these playdates, possibly because we felt outnumbered by our own children.

As time went on my kids and Debbie’s kids ended up going to different schools and so we gradually drifted apart. I would occasionally see her somewhere in town like at Target or Wegman’s and we would stop for a few minutes and catch up. Eventually I returned to my 2nd grade classroom and before I knew it I heard that she was teaching first grade in a neighboring town. She was a few years younger than me but she always seemed wiser. I don’t know why but she just did.

Once we became busy teaching and raising children, Facebook became the way we communicated. She was one of those people that had great perspective so I would post something and she would respond in a way that made me feel understood and also in a way that would make me think about things differently. I remember her posting that she was having some physical balance issues and the doctors thought that it was likely a side effect of medication she was taking for Crohn’s disease. Her doctors decided to do a battery of tests to rule out other more serious possibilities. At the end of September 2016, when all tests were completed and all possibilities exhausted Debbie was diagnosed with ALS. On April 4, 2018, just 18 months later, Debbie died.

The thing is, ALS is not what I remember most about Debbie. Once she was diagnosed she started a blog. Her blog was about her journey with ALS, but what I remember most about Debbie was her perspective on life. By all accounts she was a gifted teacher, an amazing mom, wife, and daughter and she cared deeply for her extended family and lifelong friends. She had a great sense of humor and had a way of making people feel comfortable with really uncomfortable situations.

So, why did I decide to write about her today? Well, I was sitting around feeling the negative effects of social distancing and Debbie popped into my head. No matter how bad things got, she was always able to find something positive. I wondered what she would say about the recent world events, specifically the pandemic. So I am going to quote from her blog, “Not Gonna Be a Debbie Downer”.

“How I handle crisis and illness…and potentially embarrassing situations, will be observed by my children, students and my community at large. It is my opportunity to make an impact”

“Say hello to the stranger in the elevator, give the homeless man a few bucks…forgive others’ silly mistakes. Check on a sick friend…pass on your strength to others when they are running low. There are infinite ways to be kind.”

I Visited My Room Today

Day 26 of 31

This is my counseling room at school. I was allowed to go in for 15 minutes today in order to collect anything that I might need going forward. You see, when I left on March 10th I didn’t think it was the last day I would be there. Most of us had an idea we would be transitioning to remote learning and my district, being forward thinking, even had us participate in an afternoon session of planning the prior Monday. But our closing came suddenly with a possible exposure somewhere in our school district and like most of my colleagues, I didn’t bring home materials I thought I would need long term. I am a planner and I am proactive but I just didn’t think this would be long term. On March 11th, at around 5:30 am, we received the call that school was closed.

Today I went in. I saw a few teachers in the parking lot and really wanted to hug them but I knew, and they knew, that we couldn’t risk it. We all wore gloves and our arrivals and departures were staggered so as not to be near others. Notice the suitcase? That’s not normally in the middle of the floor but I knew I needed some files and books and with only 15 minutes I wanted to be able to simply pack and leave, which I did, in two suitcases.

So, what does a counselor put in her suitcase? Well, I left the dollhouse and board games since it would be challenging to play with those virtually. I packed mindfulness cards, yoga pose pictures, some files, and my school laptop. Next came what I thought would be the easy part, packing the books. I packed books related to respect, families, being a good friend, mindfulness, honesty, self-concept, adoption, anger and differences. Ahh…that was easy.

But then it occurred to me that I should look at the books on the other side of the room. The books stored there are set aside and are what I consider the “just in case” books. Those are the more serious topics like sexual abuse, illness, grief and death. I keep those on display but not prominently on display. I quickly and sadly arrived at the conclusion that I actually might need those books, specifically the illness, grief and death books. I hardly ever need them but now with this viral threat, I knew I had to bring those home too. I knelt down, looked through the baskets and collected some that I thought I might need to use. I walked over to the navy suitcase, place them inside and zipped it up. I then checked the time and noticed that my 15 minutes were almost up so left my room until it is safe to come back. Just when that will be, is yet to be determined.

The Gerry’s Mother In Law Rule

Day 25 of 31

My husband and I sometimes speak our own language that others don’t understand. At times we can look at each other and just know what the other is thinking. That’s what happens when a couple has been married for 28 years. We have references that only have meaning to us and we tend to perform well when engaged in word association games such as Catch Phrase. During our marriage we have developed phrases that if heard would require an explanation.

One of those phrases came up today. With the changes in our routines this month we have had more down time at home together. Along with our changes in routines, we have been staying up way too late at night so naturally, when the afternoon rolls around I feel like I could benefit from a nap. Today I walked into our bedroom and said, “I think I’ll take a nap.” My husband looked at me, pointed out the time, (3:00pm) and cautioned, “You can’t. Remember the Gerry’s Mother-in-Law Rule!”

Now obviously no one except me and my husband know what the “Gerry’s Mother-in-Law Rule” is so let me explain. Gerry was my husband’s coworker many years ago. They were talking one day about being tired over the weekend. My husband commented that he took a nap in the middle of the day. Gerry said, “Oh my wife won’t let me take naps because of her mother.” My husband was confused. Gerry continued sharing that he had a mother-in-law who would take naps every afternoon and then she would have trouble sleeping at night. The difficulty sleeping at night would cause her to take a nap the next day and this would be repeated day after day and night after night. She was in a loop of not being able to sleep at night because of the napping during the day that was going on for years. It was indeed a cautionary tale of daytime napping that led to nighttime insomnia.

So that’s why my husband cited this rule today. He is trying to save both of us from the fate of Gerry’s Mother-in-Law.

Transitions

Day 24 of 31

From the known to the unknown

From cold and rainy to warm and sunny

From being out of my routine to creating a routine

From obsessing on the news to turning off the news

From working all day and night to setting limits for myself

From staying up too late to adhering to a normal bedtime

From “maybe I will exercise today” to “what time will I exercise today”

From wearing stay at home clothes to wearing out of the house clothes (but not leaving the house)

From not knowing what’s for dinner to planning what’s for dinner

From no time to walk the dog to tons of time to walk the dog

From stressed to more stressed

From stressed to less stressed

From feeling overwhelmed to feeling like “I got this”

At least for today