People always say that you never know how you will react until it happens to you. And I can tell you that that couldn’t be more true. When I was going through the testing leading up to the diagnosis I only told my boyfriend Scot, and two close friends. Much like with the thyroid issue, I just didn’t want to needlessly worry my loved ones. My husband had only been gone 2 and a half years, it all seemed too close. But then when I did find out I had cancer I simply could not tell my kids, I shard with my sister, but not my brother nor my mother and father.
I was diagnosed with smoldering multiple myeloma, one step above MGUS and one step below active multiple myeloma. I would not need treatment until my disease became active. So, I decided that I would not tell my children or the rest of my family until I had to be treated. If anyone had ever asked me, “If you found out you had cancer what would you do?” – keeping it a secret would not have been my answer. And yet I did. My daughter was newly engaged. My goal was to hopefully keep it a secret until after the wedding.
For the most part keeping the secret was easy. Telling people you have cancer, an incurable cancer, really isn’t something you look forward to. I did share it with a few other friends. Always making sure it wasn’t someone that somehow it would get back to my kids. Someone told me that when you someone says they won’t tell anyone, they tell only two people. And you know, I think that’s probably true.
I decided to get my care at Dana Farber in Boston, it was between Dana Farber and Memorial Sloan Kettering in NYC – my sister wisely suggested that maybe we should just try a change of scenery (my husband was treated at Sloan). I feel that I am getting world class treatment there. My clinician, Dr. Munshi is smart, thoughtful and kind-hearted – smart being the most important factor for me.
In November there were some changes in how of active multiple myeloma (MM) was defined. And I saw that I met some of the criteria. Dr. Munshi scheduled a bone marrow biopsy. I was anemic. And at my December 11th appointment he told me that it was time we started to treat my MM. He eased into it, in the gentlest way. And when I cried he reminded me that when I first came to him I was anxious to do something, to get some treatment (there was a promising clinical trial of a vaccine, but I was missing the antigen required). My sister and I laughed later in the car yelling “Fuck him for reminding us of what we wanted!!”
So there we were, December 11th, he wanted me to start treatment right after New Year’s (or sooner). I had to tell my kids. December 18th was the anniversary of their father’s death. We had fun family holiday events planned that I didn’t want to ruin with my “news”. I wanted to tell the two of them together, in person. I kept throwing dates around, trying to figure it out, how to get them together without raising their suspicions, but tell them together. It came down to Sunday, December 28th. We were going to NYC to see my stepson and his family. I decided I would tell them on the way home. And then my son “blew us off” and didn’t come. I figured we would stop on our way back at his place and I would tell them then. My daughter told me that she and her fiance would be driving separately. So I finally decided I would tell her before we went our separate ways in the city and then I would stop on my way back and tell my son. Not ideal. And I hemmed and hawed the whole time, do I, don’t I. My heart was racing, I was having terrible anxiety. I was a mess. I ended up telling my daughter standing on a street corner in NYC. Which is oddly private, probably more private than sitting in a restaurant. It was noisy, no one cared what we were doing, that we were crying. It was one of the hardest things I have ever had to do.
And then I call my son to tell him I am going to stop by. He isn’t home, out with a friend, “why what do you want to talk about?” – so I tell him over the phone. Best laid plans…
My sister was tasked with telling my mother, father and brother – she is my hero.
My sister-in-law told my husband’s family. And I believe the word has spread, a bit.
But this brings me to here, this blog. When my husband was sick I created a CaringBridge page for him. He knew so many people, had so many friends, it was truly onerous to think about keeping everyone informed as to his status. There were always people who wanted to talk to and tell himself after an appointment, but the site became a way for everyone else to know and reach out to him.
I couldn’t bring myself to make my own CaringBridge page. This seems less morbid, even thought it may serve the same purpose.
Did I ever think I wold have a blog? No. Did I think I would be diagnosed with cancer at age 52, no. But here I am, and well, here I am.