Turning points

I got an update from NIH today about that TIL trial I’m in.

I'm out.

They didn't find anything they could work with, and nothing they could artificially modify to work with either. The trial is over for me. It also shuts the doors to any kind of vaccine trial or anything new they are rolling out as well ... since finding reactivity was the starting block for all of that. 

I’ve been scared and hesitant for weeks to reach out to them to ask them how things are going. No news is good news right? Not really. It’s just potentially bad news left unsaid. “Be careful what you ask for” and all of that. Then finally yesterday - after finding out my tumor markers are rising again - in a huff of determination and steely, yet fleeting, resolve - I emailed my trial doctor and my trial nurse. I emailed the doctor for a status update and I emailed the nurse for a list of new trials that I might be a candidate for, in anticipation of a potentially bad result ... which ... ended up happening.

I know that the whole thing was a chance at a chance anyway ... and that there was no guarantee. But I still hoped. How could I not? How could one not hope to be the outlier. The one odd - strange case, that sticks out where things just work. How could one not hope - to be the lucky one.

Yesterday I check my lab results and they showed that my tumor markers had gone up by 40 points. From cycle 1 to cycle 3 on this new chemo, they dropped 400 points. This past Thursday I started cycle 4 and now it looks like they may be climbing. When this has happened in the past, it means that the drug is starting to fail. That the cancer is starting to become resistant to it. I don't know that 40 points means that absolutely right now - but it sure as hell makes me worried. It makes me feel mortal. Very, very mortal. In my head it means that I only managed 4 months on this treatment and that I've got maybe 5 standard/approved treatments left. Each one is tested for 6 weeks to see if it works and if it does, we keep going, if it doesn't it means we switch. What it means mathematically is that it all comes out to around 30 or 40 weeks before I'm out of standard options. 30 or 40 weeks. It means if that happens, this very well be my very last holiday season.

Yesterday I broke down. I've been having anxiety attacks that wake me up at 2 am and keep me awake. Attacks that wake me up in tears at 4 am other mornings. Depths of sadness that elicit a well of tears that spill simply because Mike hugs me. I feel like my heart is breaking.

I tried to venture out on the ledge and convey to Camden what was going on. I had broken down crying in the playroom with them and he noticed. He asked me what was wrong and I tried to explain to him, "You know mommy is sick right? That I go to the doctor's office a lot because I'm sick?" "Yes," he says ... but then I hesitate because I'm unable and unsure about how to get the next bit out. "I'm crying because mommy doesn't know that she's ever going to get better."

But I had hesitated too long. The TV caught his attention and he didn't hear the second part. And it's OK that he didn't. It was like a practice run for me. Saying it to him, but not saying it to him. The hardest part of anything we do - is the first time. That's not to say the next time I try to talk to him about it, it will be any easier - surely not. But at least I'm starting to try. I feel like I'm starting to need to try.

And now I’m really starting to plan. Because I feel like I can now see the end of the road that I’ve been on for the last two years and eight months. I’m visualizing the conversations that I’m going to have to have with my co-workers ... saying goodbye. It makes me cry. I feel like the next time my scans show progression- that will be it. That will be the indication that this is only going to go downhill from here and I’m going to have to go on leave from work and it’s highly likely that I won’t be coming back. And that means that it’s highly likely I’ll only have another year or so left of my life. It feels like a permanent step.

And that remainder of my life will be spent jumping from one chemo to the next until there’s nothing left but hospice. The feeling that this might truly and really be my last holiday season ... ever. The need to take family photos feels really urgent now. The need to capture as much of myself in some fashion so my boys have something to know me by - it feels hopeless. Like anything I do is going to fall short of what they deserve. A legacy video. A handwritten notebook of errant thoughts and motherly/life wisdom. Pictures. Emails. Future gifts maybe ... all not enough. Not nearly enough. Because what are all these things compared to the vastness of life that they’re going to have without me.

All the hopes and experiences I intended to have with them - want to have with them - hoped to have with them - I feel desperate to impart on Mike ... to make sure “this” happens or “that” happens. Love them like I would love them. Teach them what I would teach them. Guide them to be loving and kind. Pick them up when they fall down. Show them compassion and love, because sometimes - they just need a hug, even when they're being bad. Be to them what I would be to them. And be to them what you be to them too. "Be everything to them!" The feelings are frantic and wild and desperate.

But then I realize how unfair that is to him, and how great of an ask that is. The pressure of an ask like that is unfair. He cannot be me, and him, to them. He can only be him. And I realize that I'm sad that the boys will be without me in the majority of their life and that there's nothing I can do to correct the injustice. It will be his life to lead with them, with just the memory of me.

The utter lack of control of everything in this situation is heartbreaking. And aggravating. All I want to do is to make sure they all have the best life possible together. If I can’t be there to have it with them - then I want to make sure they - my little family - have the best dynamic between them and the best life they can have. But yet there’s absolutely nothing I can do to ensure that. At all. And if anything - in all honesty - my death contributes to the “not the best life possible” bucket, so that's already fucked. It’s an automatic asterisk. A caveat. The “best life you can possibly have ... after your wife/mother dies.”

It makes me so angry.

Its hard not to feel punished. To not grasp at straws for every possible thing that might turn the tides. To not read too far into every encounter as if it’s all a sign that I should do one thing or another. Maybe it could mean the difference between dying and living.

It’s hard to not hope beyond what is reasonable. I’m a fucking optimist by nature. It’ll be fine. It’ll work out. We can do it. We’ll figure it out. Let’s give it a try and see what happens. The tempered optimism that I have now - it's the saddest thing in the world.

Being optimistic that I’ll get one more Christmas after this one (December 2019). Being optimistic that Mike and I might make our ten year wedding anniversary (April 2020). Being optimistic that I might see Nicholas start kindergarten (August 2021). When I see these dates - they feel like a stretch. And they make my heart sad. And yes - perhaps I'll still get a year or two or three more ... but look how fast the first 2.5 years went by.

When you realize you truly don’t know - with any kind of certainty - that you’re going to make it another year ... or three ... a pit opens up inside you. Your perspective widens - a lot. You're heart breaks ... slowly.

I tighten up my bucket list - combining things so I can cross off as many of them as I can in an efficient manner. The list of things that needs to be done before I die - so I don't leave any unfinished projects - gets longer. I contemplate legacy - and how to leave it. I know I need to start recording videos of myself talking into a camera ... but fuck - that feels really real. And they'd likely be 20 minutes of me ugly crying with words no one can understand anyway. Who wants to watch a video of heartbreak to remember me by. But maybe soon. I'll get there I'm sure.

I'm just trying to get through the day without crying and without an anxiety attack. I'm usually very not prone to anxiety attacks. But more and more these days its happening ... as the end of me feels closer and closer.

I don't want to let go.









Comments

  1. Melissa, I clicked backwards after leaving a message of hope and prayer and stumbled on your recent update. Don’t give up, plan, but don’t give up. Keep calling on every trial you can find. Make that your mission. If you can, stop work and focus on every and any way to get into these trials. I will continue to send healing thoughts and prayers. Peace, love, joy, understanding and acceptance are my wishes for you. Jeannie

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