Such blessed words! My husband and I were incredibly grateful and we went home with light hearts, believing in the miracle of healing through science.
Only, it wasn't true. I wasn't cancer free. Only six weeks later, I was experiencing extreme neck pain that I attributed to a fall. I suspected bone mets, but too many people told me that couldn't be since I had just received a "cancer free" diagnosis.
Three months and twenty days (111 days) after I was told I was cancer free, I was told that I had extensive disease throughout all but two of my vertebrae, in both sides of my hips and in one rib. The cancer was so bad in my neck that I had a broken vertebra and the two vertebrae below the broken one were in danger of fracturing as well.
My oncologist said that this was not recurrent or returning disease, but was disease that had been there from the beginning, held in check by neoadjuvant (before surgery) chemotherapy. I was a transfer patient in from overseas and had been seeing my oncologist in the US for less than six months when I was known to be metastatic. My original diagnosis with her was revised to be Stage IV from the beginning.
Here I am ... days, weeks, months, years later ... still living with cancer. It's been 1,333 days since I first heard the words, "You have breast cancer." Sometimes, it feels like it's been forever. The cancer is now in every vertebrae, more lesions in both sides of my hips, in one hip socket, in several ribs, in my sternum and in my liver. I've had 3 biopsies under local anesthesia, 2 surgeries under general anesthesia, 5 in-office procedures that were more painful than cancer itself, 8 rounds of intravenous chemotherapy, 69 radiation sessions, 11 months of oral hormone treatments, 7 months of a clinical trial, 13 months of oral chemotherapy, and now, entering my 4th month of new hormonal treatments combined with a pathway blocker. I've worn a neck brace for 4 months and I've used a crutch for 6 weeks. I've traveled thousands and thousands of miles (I commuted from northwest China to Hong Kong 8 times and currently, a single visit to my oncologist is 102 miles round trip) and I've had hundreds of doctors' appointments. I think it is obvious the measures I will take to keep pushing this disease back as far as I can for as long as I can.
I was interviewed last week for a human interest story on living with breast cancer. I'll keep you informed on when the article prints. One of the questions asked was, "How has your life changed or how to you approach each day, knowing you have this disease?"
While I've been asked this before, I'm always a bit hard pressed to give an answer. One day might have one answer while another day might have another answer. On that particular day, I said, "I'd like to think that I live my days with purpose, with intention."
I have a bunch of inspirational thoughts on my kitchen wall (picture for another day), one of which says, "Live like it's your last day." I like the sentiment behind that ... that each day should have meaning, just in case it's the last day you have.
But you know what? It's absolutely exhausting to live that way. There's a certain level of adrenaline that goes with that type of approach and after a while, your body just tires of "living on the edge." Some days it just seems impossible to sustain that kind of thinking and that it would just be simpler to lay down and go to sleep, never to awaken again.
I'm not keen on the battle metaphors used in Cancer Land, but I understand them. I am so tired ... beyond tired ... beyond fatigue ... beyond exhaustion ... but each day, I get up to live another day. I'm fortunate in that I'm not in pain (very little) and I'm at the top of the scale used to measure patient functional abilities. I have friends who do not have cancer who cannot keep up with me. The mental parts are often the hardest parts, though.
I celebrate with each and every friend who celebrates their cancer-free anniversaries. My metastatic club needs to have the doors slammed shut and locked to allow no others in. I do not want anyone to join me here.
However, sometimes, I just ache with jealousy and envy when I read public posts of these anniversaries ... and see all the lovely words of encouragement and praise saying, "We knew you could beat this!" or "Cancer didn't stand a chance against you!" or "God is so good!"
Wonderful words to hear, yet piercing to my soul. I didn't beat cancer, cancer stood a chance against me and dare I say it? Was God not good to me when I was given a terminal diagnosis?
Metastatic disease has changed me. I have a batik print on my wall that says, "My cup overflows" and many, many days, I do believe that. However, the shattered pieces of my cup are now in a beat up plastic bucket that looks ready to spring a leak at any moment and I'm asked more about "What's on your bucket list?" than "What are your blessings?" I can (and do) find miracles in every single day (Waking up is a miracle!), but it's hard to do sometimes. Metastatic disease has challenged every fiber of my being.
I'm hard pressed to truly express my multi-faceted, multi-level emotions. I can swing from one extreme to another, all within the same day, and wonder what in the world am I doing?
I am desperate to live. I do not want to die. And so I press on, one day at a time. There's so much I do not understand and that gives a sense of desperation as well. I like how Augustine of Hippo said, "Trust the past to God's mercy, the present to God's love and the future to God's providence." (I wrote that quote two years ago on this anniversary date as well.)
I have scans tomorrow. I always prepare myself for worst case scenarios so that I'm not caught off guard. I also tend to freak out the week before scans (They don't call it "scanxiety" for nothing!) and I'm at the peak of my freak out now. I have to cling to the core of my beliefs that God IS good ... regardless of my outcome ... because in spite of all my questions and queries, I do still believe in a God of love.
Two years ago, I also wrote that Albert Einstein is quoted to have said, "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."
I'm still choosing to live a life of miracles, but I'm honestly saying that it's not easy.
I am so tired.