Monthly Archives: March 2017

An Honest Look

This is the essay I’ve been struggling with. I’m still not ready to write it, but I desperately need to get it out of my head.

You might wonder why, if you’ve called me. I haven’t answered or called you back. I’d like to try and explain. See, if we talked, I’d have to choose a way to present myself or choose an acting back story. I think I’m a pretty good actor, but I’ve learned it takes a tremendous amount of energy.  Here are my choices as I currently see them.

 

Denial: Ignore the whole thing. Pretending that this isn’t happening is certainly tempting. Some days I wake up and feel like my old self. When I’m immersed in an engaging book – often a mystery—or a TV show with compelling characters or plot – let’s hear it for Netflix – it’s pretty easy. Unless, of course, there’s a mirror in the room. Seeing myself bald shatters any possibility of denial. Talking to someone while denying that anything’s wrong is beyond my ability to sustain for any length of time which is why visiting my mother is so difficult. The innocent question, “How are you?” is amazingly tricky.

Truth: The whole truth and nothing but the truth. Unfortunately, I don’t exactly know what the truth is and won’t until I’m re-scanned next month. What I do know is that the cancer (tumor in my breast and one lymph node) that they originally discovered on January 10th has proven to be far more extensive and more aggressive than originally thought. Surgery isn’t an option. I believe the chemotherapy I’m receiving is intended to be palliative rather than curative. (Palliative chemo is intended to extend life while maintaining quality of life rather than curative chemo which is intended to eradicate the cancer.) Originally my oncologist said he felt I had 3 to 5 years. The scan coming in April will give us new data to identify a more determinative prognosis.  This level of truth without significant certainty is something I discuss with myself, Dr. Onitilo, and two very close friends. (Frank and the kids get a somewhat edited version of this one.) This is the dark night of the soul identified by poets and philosophers.

If this was a magazine article the following paragraph would be in a boxed and shaded sidebar. Please don’t think I’ve given up. I will certainly partake of all the possible life lengthening opportunities for treatment while measuring the effects against QoL. (That’s Quality of Life for the uninitiated.) I also believe that miracles – big and small, expected and unexpected – occupy a place in life. Odds exist because someone gets to beat them!

The Positive Patient: A motivational speaker in action. Not to be confused with denial, this posture contains the “glass is half full” approach. You’re strong, if anyone can beat this – it’s you, and get well soon all need to be met with a nod and a smile of agreement. My mom. my aunt, I had the same thing and she’s/I’m fine 10 years later, also requires this response. All of these spoken-with-love, encouraging comments are meant to provide the encouragement everyone needs and I appreciate their intent. (Note: this is the paragraph that has kept me from writing this essay for so long. In no way do I want to denigrate the wonderful email messages, cards, and advice I’ve received from so many friends and colleagues.  I treasure each and every one. This is a walk in their shoes situation. I know, I’ll change my behavior with others in the future. See the book I recommended in my last post.) The positive, everything will be okay response requires my finest acting skills and tons of energy. I use this script for my grandchildren and friends I encounter in daily life. Friends who call and leave messages and, in my mind, want and need this response, create the most guilt when I ignore them.

Here’s what I’d like to be able to do. Matter of Fact: Telling the resolved truth. Once I know what the scan shows and what my actual prognosis is, and have processed it with my family, it will be easy to share the future. Promising or bleak, I’m really good at expressing this kind of reality. (If you’re a MBTI aficionado you know, it’s what ENTJs do best.)

 

So, here I am counting the days till the scan while the voice mails and conversation requests mount up. Thanks for reading and understanding. I promise, we will talk soon.

Update With an Excuse

I’ve been struggling with an idea for meaningful essay for about 5 days, hence no post last week. Now since I’m heading into a second week with no post, I decided to pass significance and go to “For pete’s sake, Chris, write something!” So with a promise to conquer my confusion over the essay I want to write later today.

Here are some informational updates.

I have now finished two rounds of chemotherapy – once a week for three weeks and an off week constitutes a cycle. After one more cycle – sometime in the week of April 10th, I’ll have another scan and we’ll be able to see if the chemo is having any effect. When I see my oncologist next week I’ll be asking how long we’ll have to wait for results. Instantly would be a perfect answer.

After the first scan, surgery quickly fell off the table as an option. Given the invasive nature of my cancer, removing the breast tumor became an unnecessary step.

Every day I continue to be flooded with cards, emails, and voice mail messages of good wishes and support. I can’t tell you how much they mean!

My daughter Miriam and I tripped over a wonderful resource during an internet search for cards appropriate for icky life situations. We found Emily Mc Dowell’s site www.EmilyMcDowell.com and discovered she collaborated with Kelsey Crowe, Ph.D. on a book, There Is No Good Card For This: What to Say and Do When Life is Scary, Awful, and Unfair to People You Love. IT IS A GREAT BOOK! One that you will be happy you read when you need it. (Of special interest is the brief section that discusses how bosses can effectively help an employee who’s dealing with illness or loss.) I highly recommend you add it to your library. I am in awe of the power of words in difficult times.

Searching for Normal

Days start, some in the wee hours and some at what, in my before-cancer-life, was what I considered a normal time. My run to the bathroom my first clue of how the day is going to unfold. Two things happen in the bathroom that reminds me that my life has fundamentally changed: the quick glance in the mirror that shows either a bald head or, if its been a cold night, a yellow hat knitted lovingly by my friend, Sharon or a colorful bandana supplied by my friend, Pam that I put on at some point during the night. Then there is the pause to remind myself to disinfect the toilet seat and cover before and after flushing. After these relatively quick occurrences, I monitor the time I choose to spend in front of the mirror preparing for what happens next.

(Just a side note about the bathroom. [Warning: Might be TMI] Due to the type of chemo I’m receiving, my bodily fluids are considered toxic waste. So no spitting, sneezing, tissue sharing, sex, or toilet flushing without hazardous waste precautions. In the bathroom that means a toilet wipe down with a anti-bacterial wipe after every use. Never has our toilet sparkled as it does these days.)

Tuesday is a no choice day. Get ready for a trip to the Marshfield Cancer Center for my weekly Chemo Treatment. Feels almost regular. What am I going to wear? What time is my appointment? Who’s going with me? What do I need to bring? Is it a meet with the Doctor week so get your questions ready or just blood work and chemo, so bring a good book or charged iPad? I can almost convince myself that it’s like getting ready to go give a speech as long as I don’t think too hard.

Saturday is also pretty easy. Miriam is going to pick me up at 7:00 am for our normal Weight Watchers routine: weigh in, meeting at 8:00 am, run to the Farmer’s Market for eggs and a great Mother/Daughter discussion over coffee and breakfast at Patina’s. Back home for a nap.

It’s the other days of the week that can be tricky. Those are days I have to make a decision. Am I chemo tired and need to just be lazy, depression tired and need to give into to feeling sorry for myself for a while, or am I attitude tired and need to give myself one of those motivational, change is good presentations I’ve preached to others and just get on with it? Why, I think on these days, can’t things go back to normal? When days were filled with possibilities and activities destined to bring an unfolding future.

It’s not that I’m giving up or that I’m unwilling to fight and do everything possible to have a long and productive future; it’s just that right now with the information I have and the short-term options available, the futures not looking so promising.

Actually if you’ve read this far, please know that this is a good day. As speakers were taught not to share emotional stories with our audience until we’ve thoroughly processed those emotions for ourselves. As a writer, especially in a forum like this, I guess we get a little more leeway. I certainly haven’t finished processing this experience. Guess it will take the rest of my life to get it figured out! For those of you who know me as an upbeat, positive, change-has-a-silver-lining kind of a person, I’m certain this is difficult to read. However, writing this truthfully is helpful for me.