As I sit here in the resource room at the Princess Margaret Cancer Lodge I can’t help but think of all the other places I’d rather be right now. Every Wednesday a volunteer driver from the Canadian Cancer Society picks me up and takes me to my photopheresis appointment. Wheels of Hope

I spend the night at the Lodge in Toronto so I can make it to my appointment the following day. I am unable to drive myself after my treatments. I drove myself once and I won’t make that mistake again. I was nodding off while driving home. My eyes are extremely sensitive to light for 24 hours after so that becomes an issue also. I am on treatment #12, no noticeable changes in my skin yet. The doctors here say I won’t notice a change until treatment #20, that’s if it even works for me. I hate that there is a possibility I could be doing all of this for nothing. Right now my two days off are spent here, where I am usually alone. Everyone staying at the lodge is twice maybe even 3x my age so it’s safe to say I’m the youngest person by far. Princess Margaret Cancer Lodge

After a recent visit to an Ophthalmologist, it is confirmed that I have cataracts forming in both eyes and I have chronic dry eyes from the GVHD. After only a few months my eyes have gotten progressively worse so I will be needing cataract surgery ASAP. My cataracts are a direct side effect from taking prednisone. It’s one of those long term side effects you read about but convince yourself..that won’t happen to me.

Now let’s talk about the inevitable…death. The thought of death has been very prevalent in my life the past few months. I was given the unfortunate news about a friend of mine I met through the Pink Pearl Foundation. She had the same type of Leukemia (AML) and treatment as I did. She battled with GVHD of her skin and lungs which eventually took her life.  My Aunt Cathy, who I mention in one of my first posts, has passed. After 10 years in remission from lung cancer it came back with a vengeance. This news really hit me hard. I cried everyday for about a week. She was one person I could call anytime to chat. Someone who understood what it’s like to have a serious illness and the emotional and physical pain that comes along with it. She decided to have a “celebration of life” rather than a funeral but it didn’t make that day any easier. The morning of her celebration, I received news that my Grandpa had finally taken his last breath. He was 90. A life very well lived. That same morning, my brother and his wife welcomed a baby girl into this world. Andee Kate. As we lost 2 family members we gained 1 more and I think that’s exactly what my family needed.

We are all going to die at some point. Some a little sooner than others. I have come to terms with the fact that I will not live until I am 90 like my Grandpa, or even to 68 like my Aunt Cathy. My friend Diane was 40. She left behind a husband and two daughters. This breaks my heart. With the topic of death lingering in the air the past few months, I can’t help but think about my own mortality. I fear gaining new friends and relationships. I don’t want to let any more people down or have anybody else worry about me. I am having negative thoughts again more often these days. At my Grandpa’s funeral I couldn’t help but think..the next funeral in this family is going to be mine. I know that sounds very morbid, but it’s reality whether I want to believe it or not. At the same time, as my 5 year transplant birthday comes up I can’t help but feel proud of myself. The past 5 years have been physically and mentally draining. It has not been easy. It’s still not easy. I will continue to worry about what’s to come for the rest of my life. I will continue to take life one day at a time.