If only you’d have known me before the accident
For with that grand collision came a grave consequence
Receptors overloaded, they burst and disconnect
‘Til there was little feeling.
Please work with what is leftDeath Cab For Cutie, “Ghosts of Beverly Drive”
The last week has been a pretty surreal. I’ve found myself floundering around. There is no post to guide me, and there is no floor to ground me. I am suspended. Last week’s bad news came like a car crash, and a week later I still find myself frozen mid-flight, waiting to discover where the momentum will finally fling me.
Wherever that place is, I am doing my best job of avoiding it for now. Because I know just how much the impact is going to hurt. I am afraid to be grounded, because I know that means taking a hard look at how much closer I am getting to the end of the story. About how quickly I burned through FOLFIRI. About how much longer trials and third line treatments are likely to take me from here. Some people can live years off of FOLFIRI. Me? I got four months (okay, closer to six if you count the time before my surgery). I am through the windshield, the glass is shattered, and debris is flying everywhere. The fate of this disease reminds me, time and time again, that I am not the one in control. My ideas, plans, and goals amount to nothing in this mess.
While suspended, I float from task, to distraction, and back to task again. Any way to avoid overthinking and over feeling. Because the thinking and feeling can only lead to that fear, raw fear, of being closer to death right now than I had imagined and hoped that I would be at this point. In my head, I review all of the milestones I wanted to achieve this year. I still see the last day of school. I still see our annual summer trip with the kids to Cedar Point. I still see a cruise to Alaska in August, six months from now. Then I have to see my Audrey’s first day of High School. Finally, we have to make it back to the ocean as a family as 2021 rolls in…
But I knew not making it there was a possibility. And right now, it looks a lot less possible than I dreamed it would be at the start of this year. How long can I possibly hold my disease back from taking away my ability to travel, or to remove my vigor for life? How long can I hold my disease back before my home becomes a hospice where the people around me have to watch me die?
But this is not the time to panic. Right now, I need to stay logical and strategic. So for right now, I will continue to float about, so that I can examine this scene from all angles.
I read my written report from my scans that I ordered to be received in the mail and circle the appropriate sections to discuss with my oncologist (who has been out this past week). There is a smidgen of good news hidden beside the bad. The 9 cm cyst in my left adnexa that I was worried about on my CT is not FDG active on the PET scan and therefore NOT acting like cancer. This is actually very good because I don’t have to worry about that growing out of control and disrupting everything. This removes what I feared to be my most immediate threat. The bad news? The PET/MRI directly contradicts the CT scan in that my largest liver met grew. My mets also became more “FDG avid” than in my November PET. And it looks like I now have an enlarged lymph node near my liver that appears to be malignant…
So things appear to be definitely progressing, or “waking up.” This point was solidified by my CA 19-9 marker rating coming in at 92 this week, after it was only 82 four weeks ago, and 86 ten weeks ago. My cancer caught on to this line of chemo and it is no longer being effective, and I am currently without a safety net, or new plan of attack for where to go from here.
Avoid the feelings for now, and let the inevitable impact come further down the line. The debris will sort itself out eventually. There will be a plan, and I will try it, and I will strive for success. And the cancer is going to do what it will.
If my cancer is clever, then the only way to fight clever is to continue to keep changing things up. I have to use as many different tools as I have available to me, in quick succession if need be, in order to keep it on its toes and confused. Those tools are
first line SOC chemo, Clinical Trials, Surgery, Liver Radiation (Y90, if my liver mets gets worse- not there yet), and third line SOC chemo. I fully believe that if I had not had the three major surgeries that I’ve been through so far, I would be in a far worse place right now. They have bought me time. But surgery is off of the table for now, so my next trick has to be something new altogether. Something that my cancer is not going to see coming.
For additional time with my family, I am willing to take risks. I am willing to undergo pain and sickness. But first I have to get accepted into a clinical trial. I am fresh from SOC chemo. I am healthy (aside from the whole cancer thing). I am young. I have no other ailments or debilitation. I am primed and ready to throw out whatever abuse you can throw at me. I just need to find a trial that will trick my cancer again and give me some additional time.
I know how quickly I can get hyper-focused and overwhelmed, so I alternate trial research with breaks for shiny objects. I communicate with the Principal Investigator to find out what the trial entails and hope that I can get in. And I do still have hope. Because hope serves a vital function. It’s the thing that keeps me going to the next best place that will keep me here for my family. Another thing that I know about myself is that when the time comes, my resolve will be there. I’ve learned that despite my ability to throw an amazing pity party, I just don’t have it in me to quit. It was ingrained upon me a long time ago that I would keep getting up, no matter how much life knocked me down. This is just Heather, suspended, going through the phases of a surprise terminal cancer. The one that nobody expects to hit them just when they’ve hit mid-life.
I’ve asked all of the questions that I can. But there is no answer to “why” this happened to me, other than it was going to happen to somebody. There is no “why” to how my disease is progressing, other than that is my luck of the genomic mutational draw. There is no good answer to “why” I have to leave my family behind and die in my early 40’s other than that it was going to happen to somebody. And that someone is me. So I will hit the ground, because I have to. I will feel the pain, because I have to. I will keep trying, because I have to. And soon, I will write letters and find my way to some kind of peace. Because I have to.
And who knows, maybe, just maybe- there might be room for a small break or a miracle. Luck is a finicky thing. I do not get to choose whether it shines its light on me today or tomorrow. But I have to admit, I am feeling kind of due, should the clouds see fit to break.