AsSeenBySusan

 What a Difference a Day Makes

Moving on to Plan B? or C?

As I wrote in my last blog, I was to begin a clinical trial for an immunotherapy drug on Thursday, December 17. I had showered the night before and picked out my clothes to present a holiday spirit when I arrived at the Cancer Center. This outfit included my red/black buffalo check dress, black leggings, and my aqua green puffer vest.  The holiday piece de resistance was my Santa Claus headband which I had saved from last year's water aerobics class. If nothing else, I would be sure to get Best Dressed for the day. 

But at 8:00 the morning of, as I was dressing for my 8:30 appointment, I received a phone call from the director of the clinical trial informing me that I no longer qualified to be part of the study. Just like that, I was out.

Apparently it was because my radiation amount didn't meet the minimum level for the study. To be honest, I stopped listening at that point. It was just noise. But I got the message. Don't bother to show up because I was disqualified. 

My reaction was swift and emotional. Disappointment, sadness and incredulity erupted in tears and words. I felt lost and adrift, like a rowboat cut loose from its mooring and was now floating out to sea. It had not been an easy decision to sign the consent forms, but once I signed and dated the multiple forms, and later found out that I was in the treatment arm, I was all in. I was ready to take an active part in my treatment while hopefully helping the greater good. 

Yet, it was anger that really got to me. I didn't understand how after all the discussions I had had with my medical oncologist where he claimed that I had "checked all the boxes" to qualify, could he have missed this important criteria? In a telephone conversation with him later in the morning, he tried to pass the buck to others, but I reminded him that for me, his name was all over my consent forms as my go-to person, so he was my connection to the study. And it was his responsibility to make sure I had indeed checked all the boxes. Obviously he missed one. As a result, I felt betrayed and lost my trust in him.

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But that was then, and this is now several days later. I've come to terms with the disappointment in my own way. I'm not a believer that God has a plan for me; nor do I believe that it happened for a reason -- such as I may have had adverse side effects, it may not have worked as they thought, you know, trying to see the positive in the negative. I do that sometimes, but not this time. Instead, I've decided that it is what it is. (I know, these words have a negative connotation after you-know-who uttered them about the number of dying Covid patients.) But that's how I feel about it. It happened. Now what am I going to do?

And what about my anger? I'm turning that into action. I'm reading about what scans and tests I need in order to catch any outlying spots of cancer that may occur in my body. Through my personal experience I have learned that the medical community in Walla Walla is not adequate to diagnose and be proactive with people like me with anal cancer. There are no colorectal specialists nor oncology gynecologists. That explains why after being referred to doctor after doctor here at home because of hemorrhoids, I was eventually referred to a colorectal specialist in Spokane to correctly diagnose my cancerous anal lesion.  However, this should have happened more than a year earlier when the gastroenterologist saw a lesion during my routine colonoscopy. But instead he told me, "See you in ten years." 

This November I had the opportunity in person to remind him of his words and tell him that the anal lesion he found in me was now Stage 3 anal cancer for which I was being treated. All he could say was, "I'm sorry." But if telling him my story makes him rethink future diagnoses, then that will be a good thing.