Wednesday, April 29, 2015

Random Vignettes from scan day

Welcome to scanxiety! For those of you who have never been on this ride, keep up the good luck, may you never know first hand the stress of scan day.

I have been experiencing some focal pain in my chest wall and am long overdue for all manner of imaging, so here I am, once again waiting inside of an expanded version of time for a chest/abdominal/pelvic CT scan and a breast MRI.

To all random passers by, I am clearly distraught. My eyes are brick red, my stockings are in my laptop bag instead of on my legs, and I just spent ~ 15 minutes running up and down 8 flights of stairs numerous times looking for my ID, which was dangling from the lanyard in my hands the whole time.

Here are a couple random vignettes from the many hours that have led up to my scans today:

Five years ago, I had set my standards so low after diagnosis. I just wanted to make it until my babies could have an actual memory of me. A real memory. Not a picture that they could see with other peoples words forming their impressions of who I was. But solid memories, choked full of tangibles, like the sound of my laughter, the look in my eyes when I’m proud of them, the smell of my hair when I squeeze them tight, the warmth of my love.

Well, here we are, with all of those memories in spades 5 years later.

Victory!

But not really.

Last month, I was talking to Charly about life and death, and she told me that it will be harder for them if I die now rather than when they were too little to know me. My heart sank right through the floor. I think part of it is still lost in the basement somewhere. We talked about life and death for quite some time after that, and I think and hope very much that I convinced her that it’s way better to have been able to build all of these memories together, regardless of how difficult it would be if this disease sneaks back into our lives and takes me away. I know that she relies on me to be here, what kid doesn’t expect their mom to stay alive? How absolutely wrong for any child to have to contemplate whether it’s better for their parent to die when they are tiny, rather than when they are a little bit bigger. My pathetic bar was set before my children had any say in the matter.

I dropped Charly off at school this morning, and Maddy was talking about how hopeful she is to get into her first after school camp. It’s at the apex of her thoughts right this minute. She is contemplating the many angles of this possible addition into her 7 year old life. Will we know when to pick her up? Will a note go home? If she doesn’t get in, what will happen? Is she a big girl now? What beautiful innocence, wow, breathtaking. Her concerns, juxtaposed to my mortal fear, as I refreshed my phone every 5 minutes waiting to hear back from my oncologists office with details of my scans, left me realizing that I’m not even close to being done. They are at a critical phase in development right now. I want to set that bar so high, without regard to how hard it will hurt if I crash and burn trying to reach it.

Time through the eyes of a cancer patient waiting for a scan: I have never allowed myself to fantasize about the major milestones in my childrens lives. I just take, with gratitude, all that I am allowed be here for. But I desperately want to be there for their first date,  their first track meet, their middle school graduation, and all the other accomplishments, disappointments, heartbreaks, trivial or huge, that they will experience all the way up until I’m taken away by anything other than angiosarcoma. I can’t even bring myself to think about their high school graduations, their weddings, their children..I guess no matter how hard I try, that bar can’t be nudged more than a couple of years out.


Waiting for results on scan day: This is more a rant than anything else, and I know people in other countries who have waited for up to 6 weeks for scan results. 6 WEEKS. Those results were completely obsolete by the time they were received. So as much as I may complain in the following paragraph, I am at the same time aware of how incredibly lucky I am to have cancer in the greater Boston area with outstanding resources and a team that will go to bat for me on the drop of a dime. Now then: HOW on earth can any one in the field of oncology think it’s ok to make patients wait for scan results? I don’t know anyone who would rather wait for an in person reading of their results rather than find out as soon as possible. Not one person. In fact, I know an oncologist, who after receiving a cancer diagnosis, immediately understood this one fact: WE DON’T WANT TO WAIT to know our fate.  Knowing that the films will be read by the radiologist and filed neatly away on multiple hard drives but not accessible to me, the biggest stakeholder in this, is infuriating.

I made a tearful plea to my team, who is filling in for my oncologist today, letting them know that for the past 5 years, I have always been able to call  the day of my scans to receive the results. I think they took pity on me after I muddled my way through an explanation of what it’s like to be sitting in the middle of scanxiety.

Why I love my job: The only thing that makes this even a little ok is knowing that the people I work now, with will figure this out. Whether it happens in my lifetime, or after, these are the folks who will figure it out for humanity.

I know that impending scans gives me temporary tunnel vision, but It’s not about me folks, it’s about every single one of us. It’s not just about my children, it’s about everyone’s kids. And it’s not felt by any one of us alone, it’s also felt deeply by so many people who are in this to fix it for us. I cannot overstate how important it is for all of us to rally behind great scientific initiatives, no matter what state of living or dying we are in. There are genuine humanitarians who are brilliant and capable, and they will turn what I am experiencing right now into something that will only live on in blogs and other lore. But it’s up to all of us to do our part, to help in every way that we can, and in as selfless a manner as possible. No more worrying about where any one of us stand on the tiny pillars of life that we perceive around us. We will only prevail if we drop everything and come together.


OK, off for my first of two scans….

6 comments:

  1. My prayers and wishes for you Corrie. Scanxiety is bad . Waiting to hear good results. You are a champ.

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  2. The above comment was from me - Xena Ray from AS fb site.

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  3. Corrie, I can so relate to this post. I have extreme scanxiety, which is no fun. And the waiting….that is just cruel. Wonderful, heartfelt post!

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  4. Corrie, so sorry to hear about the scanxiety - I hope all goes well. Virtual hug coming your way!

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