Eleven years ago I was diagnosed with cancer. I remember the day as if it were yesterday. It was on April 15th, 2004. While most folks were obsessing with getting their taxes filed, I was floating through CT scans, doctor appointments, meeting an oncologist and trying to find a heart surgeon to biopsy the grapefruit size tumor surrounding and strangling my heart—all in one terrible day.
The next few days were filled with more test, surgery for the biopsy and a PET scan to see if the cancer was anywhere else in my body.
Then I had to wait for biopsies to be frozen and cultured and studied. I was floating through the day to day.
Some people I met felt compelled to look on web sites with the piece-meal and hypothetical information they were hearing from their specialists. I couldn’t bring myself to hypothesize after finding too many hits on Google on cancer. Am I supposed to try to cram medical school in to a week or do I wait for a pathologist to get test results they have been trained professionally to understand?
I chose the later.
On April 29, I began chemotherapy. Seven days after my oncologist confirmed that I had stage 4 Large b-cell Non-Hodgkin’s Lymphoma contained in a tumor surrounding my heart. Because of the location of the tumor, it couldn’t be surgically removed.
I was treated for six months. I’ve since survived and thrived.
But, I have some definite opinions about topics when talking to someone who has been diagnosed with, treated for, and survived cancer.
- Don’t share your knowledge of the diagnosis with anyone else. Don’t make it a subject of conversation with others if you are privileged enough to have been informed that someone you know has cancer. I lost opportunities for freelance employment because someone decided to share my diagnosis with a business magazine journalist who then published the information in an article. Everyone has been ‘touched’ by cancer. Most folks know that we are tested every three months after completing our treatment for at least a year to see if the cancer remains in remission. I was told by every advertising agency I’d worked with in the past, “We aren’t shooting anything now. Call us again in three months.” Cancer should be private. Don’t gossip about it.
- Don’t make cancer the only conversation you have with a survivor. We lived it. You didn’t. And, if you did you probably wouldn’t want to talk about cancer either. There is so much more going on in my life that is not related to my survival. Cancer surely isn’t an after-thought, but it is NOT part of my daily thought process. And, I am certainly not so interested in your cousin’s, aunt’s or (you get my meaning) diagnosis and treatment. Been there—Done that.
- Don’t approach someone who’s bald and frail that you do or do not know in the supermarket, bank or anywhere and touch their arm and look sympathetically into their eyes and try to talk about cancer. First, our immune system is as frail as we look and we don’t want your germs. Second, you shouldn’t feel sorry for someone if you see them out and about doing their errands. They are not bed ridden—they are—God bless them, living their life.
- Don’t call and ask if there is anything you can do for them. Just decide what you can offer and do it. You can call to say that you will be doing (fill in the blank) and would (fill in the blank) be a good time. My dear friend and esthetician Lisa jumped in and came to my house to give me two hour massages after my Nulasta™ injections which side effects included extreme bone pain. Another friend took time from her busy schedule to take me to my chemotherapy treatments. And yet another foodie friend made me food. Send a card and a nice silk scarf; big enough to wrap ones head completely, if you don’t know the person well enough to know what you can offer.
- Don’t judge a cancer survivor. Don’t judge if you see a cancer survivor drinking a glass of wine, eating red meat or heaven forbid smoking. A gal approached me at a party and asked if I should be drinking. I responded, “I don’t know. You think I might get cancer?” We know we shouldn’t and way more than you know. But, vices are vices and we are judging ourselves more than you could ever imagine with every sip, bite or toke.
- Don’t tell someone how good they look—even if you add, ‘considering’ at the end of the sentence. We know we don’t look like ourselves. We have probably lost a lot of weight or gained because of steroid use. Our skin is probably a bit grey. We know you are lying so just stop. I did enjoy a comment about how only I would be rocking the do-rag hat thing while I was out and about attending a horse show.
Please don’t misunderstand the prerogatives I’ve mentioned above—I am proud to have survived. I DO know folks that became defined by their diagnosis; I’m just not one of those wearing the colored bands around my wrists or the pin on my lapels. I’ve grown my hair longer than it was before chemotherapy and I no longer participate in therapy sessions with other patients touched by cancer. I would be very willing to converse with anyone who has been recently diagnosed if that person or their oncologists requested my insights. I fondly remember meeting a wonderful gentleman who was a 10-year survivor of my same cancer while I was enduring my first chemotherapy treatment. He said, “You can do this.” I believed him and those kind words remain with me to this day.
In my opinion,