The gray area that I didn’t know existed

My appointment with my oncologist was moved to Wednesday and I didn’t tell anyone (except Kenji) and for that I’m low-key grateful. The appointment left me in unfamiliar territory, something I was not expecting, nor really prepared for.

By the way, before I get on with it, can we just laugh for a moment about the audacity I had in thinking, “Oh, we’ve been here before. We’ve gotten the worst news possible and we handled it. We can handle it again.” (Which is true.)

Except.

We have another curve ball. Once again, life shows me just how little I actually control.

The short answer is: I don’t have a definitive answer.

Which is how I found myself, after my appointment (and some retail therapy at Home Goods), sitting at home unable to quickly disseminate the results. Nor did I have the energy or desire to do so. With anyone. Kenji only knew the details because he was on the speaker phone for the appointment (technology, for the win!).

Which, I know, is TOTALLY FINE and COMPLETELY NORMAL. I need my own space. I need to absorb and process the information I’m given. To sit with the emotions and scattered thoughts, and allow myself to be still in that place.

Or be an absolute mess sometimes, too — whatever.

I’m still in that place. I’m restless and panicky one second; calm and collected the next. It. is. exhausting. But I’m doing okay, and I promise to start replying to your messages/calling you back soon.

So, without further ado, here’s what’s true right now:

The PET scan showed activity (uptake). Coupled with my rising CA-125 blood marker (which is at 80 now, versus 60 a month ago, and 30 the month before that) — it means there’s SOMETHING happening. However — and this is a big however — the various uptakes in the scan were classified as “mild,” which means some of the areas could simply be inflammation. The same areas as last year are lighting up though, just less than last year.

Sidebar: Want to know how a PET scan works?

In plainer English, the results of THIS year’s PET scan were BETTER (relatively speaking) than LAST year’s. Even better news, there was no activity of tumors or lesions.

But, they also could be catching it earlier than we did last year.

So there’s that.

Which leaves us with the options: treatment or no action.

Treatment means chemo. There are two drugs, carboplatin and doxol — they can be used separately, or together; we can start with one and add the other; and vice versa. We would not use gemzar because my oncologist believes that was the cause of my issues with the 2nd round of treatment,

No action speaks for itself. We keep doing what we’re doing, but with closer monitoring. We’d continue the blood marker of CA-125, and add back in the HE-4 for comparison. We do another PET in 2 months

We tried the nuclear option (chemo) last time and it almost killed me. So, I’m leaning heavily toward no action.

Before I do that, I’m getting 2nd and 3rd opinions.

The first comes from John Hopkins — my biological aunt works there and has already passed along what information I do have to an expert there. Because nothing can be easy when it comes to healthcare, I have to go to Kaiser in person to get the full scope of my medical record since the online portal doesn’t give me actual imaging.

I’ve also sent the details to Dr. Tierney, and she’s taking a look. I’m stoked she’s already in the Kaiser system, so hopefully getting her access to my records will be less of a hoop jump.

Here’s some other positive news to consider:

  1. I have no symptoms. I’m eating (and pooping, huzzah!) with no issues; my fitness is improving; and I generally feel pretty damn good.
  2. Dr. Tewari (current oncologist) was super open to the “no action” option — he has strong opinions, so the fact that this seems reasonable to him (he used those words) means I’m not totally crazy to consider it.

Here’s the other thing: I can’t (and won’t) blog in real time anymore. At least, not for this portion of the journey. I put undue pressure (read: stress) on myself because I care so much about how all of you feel. I feel obligated to make others feel comfortable at my own discomfort. It’s how I get you to like me. Believe me, I’m working through this in therapy.

But worry not! You’re not rid of me that easily. I will still share news and updates, I promise. Just a little bit later and (hopefully) with less urgency. With cancer, everything can feel like a fire drill and that’s simply not the case. Nor is it helpful to anyone.

Oh, all the lessons this stupid disease keeps teaching me. You know my first. Now, we have this: there’s no reason to get all worked up about anything.

And, just so you can hold me to it later, I promise to ask for help (in the middle of releasing control and not getting worked up).

XO

17 thoughts on “The gray area that I didn’t know existed

  1. As soon as you figure out how to not fell like making others happy at your own discomfort please share! I smiled ! I think you have a good handle on things and I applaud the second opinion and third .. I think we all have our opinions and I’ll keeo them quiet cause you don’t need them you need to follow your heart .. and we need to support you ! Much love on your journey !

    Liked by 1 person

  2. I just love you. And I have loved you, as my best friend, since the first day I ever met you, on that clear sunny day in Los Angeles. That day, when I woke up I could not have fathomed I would meet my best friend. Tipsy and trying to make my friends laugh, we merged and nearly 20 years later, here we are.
    Sometimes, especially in the last three years, when I think about the friendship we’ve built, on love and trust and pain and growth and acceptance and challenge, the love fills up in my eyes and spills over and rolls down my cheeks. Because I am so fucking proud of you. Every goddamn day. And NO MATTER where I am, or where you are, I will show up for you. You’re my road dog and we are rockin this shit together until the wheels fall off.

    Liked by 1 person

  3. I hope you can stop feeling responsible for our feelings. You’re not responsible. If we’re uncomfortable then it’s our responsibility to deal with it. Please post freely. We love you and can take any or all of it. And we won’t take it personally if you don’t post. This is about you. xo

    Liked by 1 person

  4. Sending lots of love and prayers your way! Thinking of you always and always remember you do you first! This is your journey and we are just here to love and support you! We will always be here so when you are ready to share or not you do it on your timeline we will love you no matter what! Xoxo

    Liked by 1 person

  5. Sending lots of love (and pooping) your way. Sometimes this online life we try to lead is overwhelming. Just take care of yourself!!

    Like

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