If you don’t read anything else on this page, please take my advice on this ONE thing. Just this ONE thing.
ALWAYS ALWAYS read your scan reports after you have scans done. They are your right to know. ALWAYS follow up on labs that were drawn, especially if you follow tumor markers. DO NOT assume that no news is good news. Okay that was two things, sorry, but really, I don’t care. Please listen to me. THIS IS IMPORTANT.
I learned the hard way. I know. You probably won’t do what I said and, no, I will not say I told you so. Because I understand. I had gotten this same advice from various places before but at some point, I became complacent. Despite my gut feeling a bit uncertain, I WANTED to believe that everything was fine, I didn’t want the proof, I just wanted someone to say it and follow blindly. Because the alternative was just inconvenient, painful, a hassle. And then, I was wrong.
A few months ago, I started having a nagging pain in my left glute. A month prior my doctor had come in all smiles, my scans were stable and let’s space out your scans. Little did I know, my tumor marker levels were creeping up – an indication that something was amiss – a clue that, perhaps, my cancer was escaping my treatment. My doctor, bless her heart, told me that she had decided not to tell me because it wasn’t clear that the elevation of my tumor maker was of any clinical significance – it was nonspecific afterall.
Well, once I started having the pain, my feelers were up. My intuition told me something was wrong.
You see, my intial staging scans were not complete. I never got a CT scan of my abdomen or pelvis. When I had my first scan after treatment, the scan was riddled with “sclerotic lesions” in my bone – basically what we believed was scar from prior metastases. We never saw the mets in their active form. We investigated this further with a bone scan which showed just mild uptake in a few spots but nothing that looked alarming. We interpreted this as my treatment was effective in stopping my disease.
What my doctor didn’t tell me three months later was that the read on my scan showed NEW sclerotic lesions. The pain was a sign. I went to request my records. A month after the report was entered in record, I had them in my hand and I was numb.
I contacted my doctor who explained that they had reviewed this and thought that developing these types of lesions were an ongoing process. I did not buy it but smiled and nodded. I had been trying all of this time to be a nice patient. I didn’t want to be difficult but in reality, I believe my doctor was wrong.
I pushed for a PET scan. It was negative. But my tumor markers were rising. And I had this new pain. We did a bone scan and there they were, new lesions compared to the ones months before. My treatment was failing. My cancer was progressing.
The next few months have been a holding pattern of waiting for referrals and insurance authorizations. Literally, I was numb. The reality of progression still didn’t feel tangible.
In this time, I read a book about death, No Death No Fear by Thich Nhat Hanh. In facing my mortality it gave me comfort and changed my perspective. I recommend this book to any cancer patient reconciling this new reality.
Last week, I had radiation and the side effects were more than I expected. I was incapacitated. The pain was terrible. I couldn’t stand, I couldn’t sit, I couldn’t lay. I perched over pillows like a cat. I rolled around restlessly.
I started reading this random book that I had found on Amazon. I had been looking for something different. I needed to get out of my rut.
Interestingly, the author’s message is just what I needed to hear. It is about maintaining personhood in the face of cancer – something that for the last year, I felt I had lost. For anyone with a new diagnosis of cancer or progression or recurrence, I recommend reading this book. The Cancer Whisperer by Sophie Sabbage
Where are you in this journey of cancer? Will you read this book with me? Please follow along and let me know in the comments below.
Prayers and peace
xo
The Cancer Prancer