On Wednesday July 11, 2018 Abigail had her routine, monthly maintenance chemo with a spinal tap. We were all excited and in kind of a celebratory mood because we were getting near the end of maintenance. She and her team decided to remove her port. We had a very long, but very good day at the hospital. We got our pictures taken professionally by Flashes of Hope. We laughed a lot. Her nurse Lana asked if she was going to ring the bell. But alas, "No," she said. "It's not time yet," she said. And she was right, there were still 5 more Maintenance treatments left before she could ring the bell officially.
It's not time yet.
On Thursday morning, July 12, I looked at my phone and saw a missed call from the hospital. I was busy seeing patients in my office, very busy because I was the only provider that day in the clinic. By the time I was able to look at my phone again, 1130 AM, I had more missed calls, a voice mail, and an email where the oncology NP gave me her cell number to call.
I went to my office and shut the door. You just know. I knew. I knew what Maureen was going to tell me. "The tap results came back. There's blast cells. I'm so sorry."
I don't remember much. I must have made some loud noise, or my sobbing was loud because I remember my medical assistant rubbing my back and handing me tissue. She must have heard and entered my office. I started writing down everything Maureen was saying, and when I look at that paper now, I can't make out anything. I understand 'out of body' experiences now on a much different level.
I went home. I went to my apartment. Empty. Quiet. Alone. It was 12 noon. I sat at my kitchen table. I called my friend who unfortunately knows what this feels like. My "Surrogate-Mom-Friend." I couldn't call anyone else, certainly not my family. I needed to be supported. Not supporting. At the time of this writing, the only people who know are myself, Abigail, Abigail's father, and 2 extremely close friends who I am deeply connected to. I won't publish this post until Abigail says she is ready for me to.
Surrogate-Mom-Friend told me: she knows I'm going to go to my dark place. And it's okay to hang out there for a little bit, maybe the rest of the day, but then I have to get my shit together. I spent the rest of the afternoon emailing Abigail's oncology NP, researching her cancer relapse and prognosis, and figuring out how to tell her. I had a glass of bourbon. I took a shower. And I got my shit together. I cried myself to sleep. I woke up in the middle of the night and cried some more. At 5 AM I got out of bed and cried in the shower. At 9 AM I took another shower and cried a little more.
The shower crying has rapidly returned.
Friday July 13, Abigail and I went to lunch and shopped at a local boutique store. We bought each other bracelets, I bought a new planner - because you know, when I'm stressed I like to organize, make spreadsheets, check things off of lists. Went back to my apartment and had some well needed alone time. I had to tell her she relapsed. It's not fair. If I were a "regular mom," would I have to tell her? Can't the doctors tell her? It didn't matter. I had to do it, and I did it.
I gave her the smallest amount of information, let it sink in, waited for her to ask a question, or have a response. Then gave more information. Lather. Rinse. Repeat. She's still processing.
There have been many many changes since her diagnosis 2 years ago. Big changes. Changes to our family, my job, where we live. I believe the changes to be positive ones. Growth. I reminded her how strong she is, how much she has already gone through, and how those experiences have made her even stronger and able to fight even harder.
It's true. She's the strongest person I know.
So here we go again.
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I don't know the specific treatment plan yet for her relapse, because we don't know the type/site of relapse yet. At this time it is certainly extramedullary but we won't know if it is combined in marrow. If she has combined extramedullary/marrow relapse, that treatment will look different. Next week she will have another spinal tap with IT chemo (using 3 different agents), a bone marrow biopsy, her port put back in (FUCK, that was a blow to her), and she will have more labs and an echocardiogram.
Then we will know how to proceed.
Another Day 1. Another fucking Day 1. We had gotten to the point in treatment where we no longer were counting days, but rather how many weeks between treatment. Her dad and I were rotating her monthly treatments. Everything was working like a well-oiled machine. All the moving parts were coordinated.
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How Abigail is doing:
At least she is strong, healthy, and feeling well as we enter reinduction. The first induction phase was especially hard on her because she was so so so sick at time of diagnosis. I reminded her of this and I think it helped her regain perspective. I told her she can go to her dark place for a little while, but then she has to get her shit together and fucking fight even harder than ever.
Then she said, "I guess I can cancel that hair appointment I made." Then we both laughed and cried at the very sick sense of humor we share.
How Dad is doing:
I told him tonight before bed and I struggled to support him. [If you're reading this, I'm sorry. My reserves were low.] He sobbed. I told him he can go to his dark place for a little while, just for tonight, but then he has to get his shit together and be strong for our daughter so she can fight harder than ever.
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So that's where we are at the moment. Without having more information about her type of relapse, I don't have anything more that would be constructive to share right now. There's so many variables.
We are getting our shit together, and I'm not letting anyone stay in their dark place very long.
If you have any questions, please ask them here, or post it on FB. I bet someone else might have the same question, and it will help me from having to answer a million separate messages. That sounds so very teacher-ish of me, but I'm trying to be assertive, realistic, and prioritize the critical stuff from the important stuff.
