This week's newsletter came out a few days late. I wanted to mark a significant occasion that hit my life a year ago today.
Sometimes I have moments when I just start to cry out of nowhere. Not because I have cancer but because I think of how relieved I am in the place I am, a year later.
It was February 24, 2021 that I woke up and my eyes were so blurry I could barely see anything. In a panic I called the doctor who sent me to the eye clinic who couldn’t really help. For two weeks to the day, I woke up every day to it being either a bit better or a bit worse, there wasn’t a rhyme or reason to it until March 10.
That day I went to put out the green recycling bin and in pulling and turning I hurt my back. In the next few hours an immense and painful hematoma appeared. It went from my shoulder blade to my waist and was 3 inches across and was 2 inches deep and hard as a rock. Calling the doctor they said I just pulled it and prescribed a muscle relaxer.
For eight days it got worse and worse. I couldn’t walk more than 4 steps without having to stop to catch my breath. I couldn't sleep, every position was horrible. I could barely eat, just chewing and swallowing cut off my breath. Everyday I called the doctor's office multiple times and each time was told it wasn’t too serious. It was during Covid and having a hard time breathing was a big deal, but didn’t seem urgent to them.
Finally I said “someone needs to physically look at me”. I would lay in bed and for 2 hours try to psyche myself up to walk to the kitchen. It was a task that would take 20 minutes with constant stops along the wall or to sit down.
Early in the morning on March 18, my mom and sister took me to urgent care. Within minutes the doctor told me I needed to go to the emergency room. After many tests and a few hours an ER doctor rolled in a huge laptop and showed me xrays of my spleen and liver that were 4 times larger than they should be. It was at that moment around Noon on March 28, 2021 that he turned to me and said “we believe you have a form of blood cancer”.
I don’t think you can ever prepare yourself for that moment. How you will react or how you even can absorb it. I had felt so horrible for eight days that all I could think at that moment was that I just wanted to feel better.
When I arrived at the hospital and they wheeled me in on a stretcher I can remember clearly the moment when the paramedic gave them my name and said I was going to Oncology. Oncology, for cancer patients, how is this happening?
The next 24 hours included an ambulance ride, a bone marrow biopsy, a blood transfusion, MRI and ultrasound to check for blood clots. A normal person has a white blood count around 12,000. Mine was 577,000, to what my doctor said was the highest he had ever seen by more than 200,000. My blood was as thick as peanut butter, which is why I couldn’t see, which at this point was so bad everything was just a big blurry blob.
Through a series of chemotherapy tablets over a week it dramatically came down and each morning I waited for the results of the 3am blood test anxious to get down to 100,000, the marker of when I was allowed to leave the hospital. It took 12 days and I had never been so happy to get out of a place. Many of the nurses were so kind and I still think of two ladies that were there from that first night I arrived, scared to death.
When the doctor came in after being there for 5 long days waiting for the results and told me it was confirmed, I had a form of Leukemia called CML, Chronic Myeloid Leukemia. It was the best news you could hope for in terms of Leukemia and it was then after 2 weeks of pain and being scared to death that I finally cried. Laying in the hospital alone you think of every worse case scenario. What if I need a bone marrow transplant, what if I have to have a difficult treatment like radiation or chemotherapy, what if I die before I can get back to Paris.
The doctor said to me “if there was a cancer to have, this is it”. Twenty years ago an amazing doctor, Dr Druker, just a few miles from me created the life saving drug that goes after the two chromosomes that cause CML. Before that date, I would have most likely been dead today instead of celebrating one year of living with it.
It is now one year later. And everyday since February 24, 2022 I think of where I was a year ago. When I walk into the kitchen and back to my office in just a few seconds I remember when just the thought of taking a few steps seemed impossible. It seems like yesterday and at the same time forever ago.
While the thought that you have cancer is never far from your mind, there are some strange side effects that come with it. You have a new feeling for life when you are told you were just a few days from death and faced your own mortality. Life is short and don't wait to follow your heart or your dreams.
The goal that got me through the two weeks in the hospital
There is never a time I blow my nose that I am not scared for a half a second that I will find blood. Never a moment that I feel “off” that I don’t think it will lead to something worse. There is never a moment that I run into something and know it will lead to a bruise, that I am not worried it will turn into a giant hematoma.
Many people that have cancer or are dealing with anything honestly might appear just fine on the outside but know that on the inside you never forget what you have had to go through or what you are fighting. It is far easier to put on a happy face and present that you are fine, but it is never more than a second away from your thoughts and becomes a very lonely thing to live with. For all the survivors out there and those living with cancer or really any difficult disease, don’t forget to check in with them every once in a while.
Today, one year later my blood numbers are all in the normal range and my wonderful doctor just yesterday said we are 6 months ahead of where he wanted me to be at the one year mark. It will be years before we can think of reducing or stopping the medication but every day we get a little closer.
Thank you to everyone this last year for all the support and not just because of a disease like cancer. Thank you for your likes, your comments and your mutual love of history and Paris.