How do you tell someone that you’re having a bad day? And who do you choose to be honest with about why it’s so bad?
I have thought often and long about this topic as I’ve passed through this past 4 months. You know how it goes; on any day, good or bad, a stranger or casual acquaintance who asks how I’m doing gets a smile (genuine or pasted on depends on deeper things), and a “doing well, thank you”. On a bad day, a friend might get, “Getting by,” or “You know, up and down.” for a response. Only my closest friends and family get the real story when they ask, and my short response (if they’re lucky enough to get a short one) is usually, “I’m not good company today.”
I have thought about that as it relates to what I write here. My initial desire when I started this blog had a few points: To keep my loved ones updated with more details than could go in a text, to inspire faith and trust in God through expressing my own, to share and spread hope and a positive attitude, and finally, and to my point in this post, to chronicle life with cancer. I have hoped that my experience might educate, and thus take the fear and mystery away from the whole topic. Perhaps this could help readers who seek information about living with cancer to manage their own feelings more effectively.
As Mr. Rogers said, “Anything mentionable is manageable.”
The truth is that I am not afraid to talk about my cancer to anyone, but I don’t generally mention it to anyone who probably doesn’t need to know (strangers or casual acquaintances). I am mostly cheerful and manage the daily battles without fear or sorrow. I am happily busy doing things I love to do (although many of my hobbies are “put away” for now), and the emotionally tough moments come much less often than the happy ones.
But there is daily pain, side effects from chemotherapy come in a steady (mostly manageable) stream, and I have setbacks that fill me with frustration and make me wonder how I’m going to face each new reality as it comes. That’s not depressing or tragic, it’s just life, and sometimes, it is lousy.
If you asked me how I am today, I’d say that I haven’t been “good company” for a few days.
The last few days, I’ve been mad. Not mad at God, or a doctor or even at my body. I’m just mad. The surgeon who fixed my arm tumor said yesterday that the ongoing pain and weakness in my arm is probably Radial Tunnel Syndrome (like Carpal tunnel, but with the Radial nerve, which goes from the wrist, up the arm, and ends at the spinal column at the base of the neck). It is a result of the trauma from the tumor, cancer, broken bone and surgery, and it explains a lot about why I haven’t been able to increase the use of my arm, even though the tumor has healed well and I have good overall movement. I was hoping it was a muscle issue. Nerve problems take so long to heal, and I’m tired of being one-armed. And I’m tired of the pain. And I’m tired of being so dependent for even little things, like carrying an egg (it’s not always that bad, but often is).
But that is my reality, and all I can do now is deal with it the best way the medical world has to offer.
The blessing with all of this is that I have a team of brilliant, competent, caring medical professionals who are able and motivated to help me with everything I am experiencing. I’ve never seen a coordinated team effort like these cancer treatments in any other medical situation. The doctors and nurses within offices are all on the same page, and they are communicating and coordinating my care with teams in other offices. I feel like I have access to the most up-to-date solutions to whatever problem this whole process is throwing at me. And my insurance is paying the bills, apparently without me having to argue with them or jump through hoops or play stupid games.
If I could swish a wish, I would wish for everyone to have as good care as I have, with teams of medical people taking care of them, and insurance that would approve and pay for whatever was needed for the best outcome. That’s my wish for all of you.
You do manage to keep your loved ones updated, in beautiful and subtle ways, so no worries about carrying out your initial desire re this blog. The way you’ve been sharing your experience, is not only educating, but also reflects rare openness and standing out courage of mentioning, as a coping leaver, for others who need such teaching, which is unfortunately too rare nowadays.
Thank you, Tina, for letting me in this sacred personal space of your loved ones. I’m touched by such trust, which I can never take for granted.