10.25.16 – Unfortunately, we have learned of Vickie’s passing. Our thoughts are with her family & friends.
Four years ago, I heard the magic words that all cancer patients wish to hear, “You are cancer free!” Yes, I heard those words and I looked over at my husband, leaned back against the wall behind me and said, “I think I’ll cry now.”
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 damage 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. For statistical and tracking purposes, she revised my original diagnosis be Stage IV from the beginning.
Here I am … days, weeks, months, years later … still living with cancer. It’s been 1,699 days since I first heard the words, “You have breast cancer.” Sometimes, it feels like it’s been forever. I now have more than 80 tumors in my body: in every vertebrae, more lesions in both sides of my hips, in one hip socket, in several ribs, in my sternum, in my shoulder blade, at the top of my skull, in my liver, and this past summer, it moved into my brain. (It should be noted that both breasts remain cancer free and it should be noted that I do not have bone cancer, I do not have liver cancer and I do not have brain cancer. I have breast cancer that has spread throughout my body.) 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 primary intravenous chemotherapy, 69 radiation sessions, 11 months of oral hormone treatments, 7 months of a clinical trial, 13 months of oral chemotherapy, 4 months of new hormonal treatments combined with a pathway blocker, and now, in my 9th month of more intravenous chemotherapy. I’ve worn a neck brace for 4 months and I’ve used a crutch for 6 weeks. I’ve had 10 sessions of whole brain radiation and I’m on constant support drugs.
I’ve traveled thousands and thousands of miles (I commuted from northwest China to Hong Kong 12 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’ve been interviewed for human interest stories on several occasions and a question that always pops up is, “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 most days, I answer, “I’d like to think that I live my days with purpose, with intention.”
I have a collection of inspirational thoughts on my kitchen wall, 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 don’t have a lot of pain and I’m reasonably close to the top of the scale used to measure patient functional abilities. However, the side effects from the whole brain radiation include that fatigue that literally stops me in my tracks. I may not be able to sleep well at night, but when that fatigue hits in the daytime, I am asleep within seconds. I have to be so aware of this so as to not endanger others by driving.
The mental parts are often the hardest parts, though. My muscles are weakening and the time for regular use of a cane or walker is rapidly approaching. I now have handicap assists throughout the house … a shower chair, and a power lift recliner chair in the front room where I can sleep more comfortably. That chair has been an amazing addition to my routine, so I probably shouldn’t struggle with other additions. They can make just a big a difference in making my life easier.
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 hour, 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 have scans coming up at the end of the month. 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 have to cling to the core of my beliefs that God IS good … regardless of my outcome … because in spite of all my questions, queries, and doubts, I do still believe in a God of love.
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.