Skip to main content

The Plan

We finalized a treatment plan today. It's nice to know what we're "doing". 

So far the approach we're taking is chemo for a year with the drug that worked well for me last time.

If we need to in the future, we might explore radiation, other drugs, and another surgery. Lots of options! Plenty of time.

I'm confident and comfortable with the current plan. We're going with what I know, with something that has shown to work before. With my previous experience, I can be relatively confident in how my body will respond and what adjustments I'll need to make in my life.

So, feeling good, as good as you can feel with a brain tumor I suppose.

For those who know me well or have worked beside me, you all know I LOVE LOVE LOVE to plan. I make a plan to make a plan. Yes, I'm one of those.

The first time with cancer I had been in the middle of applying to PhD programs. When I got the news it was like a light switch, all of the plans, all of the stress ahead, magically lifted. I was done pestering my boyfriend about what we were doing in retirement. All of the plans and the stress with them no longer existed.

The first thing I did after finding out I had cancer now was to make new plans. Not the bucket list plans, the "when I'm gone" plans. My biggest fear and worry isn't for my own wellbeing, it is for the wake of my absence. 

This time, the biggest piece of me will still be here and I am obsessed with his quality of life. Because of him, the "worry for the future" red button has been jammed in the "on" position for the rest of my life. I hear that's a mom thing, I'm ok with that.

My docs and I always knew that my cancer was going to come back. It wasn't an "if", it was a "when". Every time I made a plan for the future I had to factor "what if I get sick again" into those decisions. Happened when I started dating Aaron, when we got engaged, and when we pulled the trigger to try for a kiddo.

The biggest planning process I've ever executed was for Torin. We started planning for him the day after we got engaged. We consulted my existing specialists, research, high-risk OBs, and I worked with my neurologist for 3 years to get my epilepsy meds at a safe place to carry a pregnancy.  Then we still hemmed and hawed on whether we should (my odds were still not good). Then when we finally said "let's do this", we ended up needing fertility assistance. Without all of that work, if we had just pulled the trigger, Torin would be 5 now.

We had to take every one of those small steps for Torin because Earl is with me every day. I don't get to turn off and make decisions like I don't have a brain tumor. A kid was the biggest and most difficult decision of my life. The best one ever, btw. My most grandiose plan.

So far, as I said, this cancer journey has been obsessing over how to help the people I love from the grave. Being a planner means I fully embrace all of the outcomes, especially the scary ones. Right now it's strategies to keep Aaron a sane parent and ways to leave my life experiences and love accessible to my kid. Also, scrubbing all of the bathrooms and maybe adding knee pads as an option next to the toilets for easy access. I'm volleying between existential and practical problems.

This post is a darker tone than a lot of what I posted in the past and my everyday social media activity. That is because I have strong opinions about people who use the internet for attention-getting "poor me" behavior. I NEVER want anyone to pity me. However, I think if I am going to truly take you all "with" me I need to challenge myself to be a little more vulnerable. By being vulnerable I mean being brave to tell you that I have known for the last 10 years exactly how I'm going to die and think and worry about it every day of my life. I didn't start making the "when I'm gone" plans for Torin now, I started making them the day I found out I was pregnant. 

It makes me glad that everyone has said "you're so positive" on my Facebook these last few days. It means that over the last decade I have been good at compartmentalizing what's hard and being in the moment with the people around me. It means I haven't let the heaviness of my disease and my future change who I am. One less thing to worry about. 

Also, now the queen of plans has a plan for the next year as well as many many backup plans. That scratches the plan itch for the biggest life issue of the foreseeable future, also one less thing to worry about.

"Two for one" deal on less worries day today, nice!




Comments

  1. UnknownFebruary 25, 2021 at 11:29 AM

    You will have the joy of his smile for the rest of your life...

    ReplyDelete

Post a Comment

Popular posts from this blog

Butterfly Day

( The title of the last blog post indicated that I needed a simple name for this day. I can't remember if someone suggested it outright, or whether they said something to make me think of it, but either way, the name I now use is Butterfly Day. Torin painted on a picture of a butterfly at school on the very day his mother passed, and his teachers had just so happened to put his name and date on it.) Another year has passed, and it simultaneously seems like a short time and a long time. I do still write letters to Danielle, but just haven't been posting them here. The one I just wrote took a lot out of me, in fact, so this probably won't be a long update. When I took over the blog, one of the things that felt important in continuing this legacy was to document not only the grief process, but the process of healing.  Overall, on a day-by-day basis, I'd say I have come to terms with my loss. By that, I mean that, except for days like today, and on a few rare other occasion...
Post a Comment
Read more

Letter In A Bottle

Today, on what would be her 38th birthday, I wrote a letter to Danielle. It's the first such letter I've written, and it was cathartic. I wasn't sure whether I would just paste it here, or just paste parts of it here, or write something else entirely, but I've decided to share it in its unabridged entirety. It re-treads some ground that I've already covered in this blog, but this was written to Danielle; those were not. Most typos are inside jokes or turns of phrase. Happy birthday, Danielle. I love you. First, foremost, and always. My love for you is unconditional, unquestionable, and unquantifiable. I miss you. Lort, how I miss you. I miss your smile, your wit, your kindness, your grace, your strength, your care, your laugh, your sillies . I miss my partner and companion. I miss my babymama. I miss my wiff. I cry every day. I have a little ritual - my specific time for grieving you. When I put Torin to bed, I play him the last video you made. I can watch the video...
Post a Comment
Read more

I need a name for this day that neither cutesy nor grim

Danielle Louise Joanette-Kluck passed from this life one year ago today. As has become a cathartic personal tradition on milestone dates, I've written her a letter, which I share with you below. Danielle, my love, It’s been one year since I held your hand and felt you squeeze mine for the last time. Though only the first of many, it’s still surreal to think about. I went back and read the blogs I wrote and the other letters I’ve written to you (some of which I’ve also published as blogs), and it very easily brought back feelings and memories of the past year. There are a number of moments that I remember like they were yesterday, and that I’ll likely never forget. It seems like a good time to take stock. How are Torin and I doing, one year out? There are a few different axes upon which we can measure, but I think I’m going to upgrade the overall answer from my frequent reply of “okay most days” to “pretty good on average” . I’ve hit a stride in my single-parenthood and feel more c...
Post a Comment
Read more