When my Paranoia is Validated

Alright so we all know I have a love/hate relationship with the super efficient oncology nurse. Or you might not if you’re new.

I think I also mentioned my next scan is March 18. Well now it’s not. It’s the 8th – as in next week. Why, you ask?

Because my Nexavar prescription is due for a refill. Which is good news because it means I’ve already gotten a year out of it, which is much more than early statistics led me to believe I’d get. The one that sticks in my mind is “time to tumor progression is approx. 5.9 months”. Twelve is obviously much better.

Given that yesterday I was over it all, it’s reassuring – a good reminder of the benefits I’ve gotten because it’s wearing me down. If I’d have written a post yesterday, it would have sounded a lot like this:

Hi, it’s me, Annie, and I’ve over it. Just fucking over it. Over being sick all the time. Over the sore feet. Over telling my family to go have fun without me because I can’t be more than 20 ft from a bathroom. Over being afraid to eat because it will make me sick. I’m hungry and weak and crabby.  My body is tired. I’m done. I can’t do it anymore!

Hell, maybe I’m still there a little bit today. But through it all I remind myself that the reason I feel like dog shit is because the drug is probably still working. If it’s still causing such extreme side effects, it must also mean it’s keeping the tumors in check, right?

But then a conversation takes place between two very conflicting parts of my brain:

Side 1: Wouldn’t it be nice if it stopped working and we could try the next drug and feel better? I hear the side effects are much much better!

Side 2: But we have no guarantee we’ll respond to the next one. What happens then? Nope, we want it to keep working no matter what!

Side 1: Oh it’ll be fine. Tasigna will be the magic drug that lets us skip through our day singing and throwing rose petals just like those annoying princesses in the movies. We’ll feel great and small birds will land on our shoulders as we stroll through the park. Come on, it’ll be fun!

Side 2: But it’s the last one before clinical trials. Are you sure we want to go there already?

Side 1: Hell yeah, no problem. Who cares if only 15% of people who developed resistance to Gleevec see improvement from Tasigna. You’ll be in that 15%. No problem. Come on, this could be the one!

Side 2: But what if Nexavar really has stopped working and this imaginary bullshit about throwing rose petals doesn’t happen either?

Side 1 : Well I’m really only letting you imagine that because we know the Nexavar IS still working. That’s why it’s ok to joke.

Side 2: But what if it’s not?

Side 1: It is. It has to be. You’ll have gone a whole year without surgery on March 17. That’s the longest since the Gleevec stopped working. Remember how horrible the last one was? You were so weak from having the August surgery that you didn’t bounce back very well. It’s still working! I know this body wouldn’t betray us again so soon.

Side 2: But what if it’s not?

Side 1: It is. It has to be.

And then the pharmacy called the dr.’s office to get the refill. And she called me. This is what she said:

Hi Annie, Diplomat called to get your Nexavar refill and I thought I’d check with you and see how you’re doing. How many pills do you have left?

Ok, so 18 days left. That’s not going to get you through to your results appointment on the 22nd is it. Do we want to go ahead and refill before then or would you like to wait until we get the results? Obviously you couldn’t handle increasing the dose so if there’s anything new that won’t be an option.

What do you think? You would like to move it up? Sure no problem, we can change it to next week and that will give them plenty of time to either refill or work a new prescription through the insurance hassles before you run out of your existing refill.

The doctor will be back in tomorrow so I’ll get his take on it but I think you’re right, let’s go ahead and reschedule you to be on the safe side.

So there you have it folks. It’s rare Nexavar works this long and we all know it. Obviously, I had thought this exact same thing but was afraid to say it out loud. I appreciate her candor.

Or maybe I just appreciate getting the scan out of the way sooner. Either way, my psycho self has been validated.

The Nexavar may not be working anymore. Or it might be. We don’t know, so why beat around the bush?

They are in the business of keeping me alive and no matter how much I try to deny statistics that quote things like “overall survival” and “progression-free survival”, they are part of my life. The reality is, at any time I can be back in surgery, changing meds or researching clinical trials.

I said on my anniversary that I am going to say OK to whatever is next and if that means being brutally honest, and therefore proactive about possible treatment changes then there it is. That’s the reality of being me.

That’s the reality of the work the oncologists and their nurses face every day. Why stick our heads in the sand? They are the people I don’t have to censor myself with. It’s what they do.

I almost wonder if my horrible awful very bad day yesterday was a way to prepare me to accept the change more easily if it happens. Nexavar has diminished me in every way. It has caused muscle loss. It wears me down mentally as well as physically. It keeps me near a bathroom at all times. It has kept me from sleeping through the night for almost an entire year. There are times it has made me wish I was dead, all the while keeping me alive.

IT is my true love/hate relationship.

Obviously as much as I hate Nexavar, I want it to keep working. It’s better than facing the unknown again. Not to mention the over the top scanxiety of the first scan right after a drug change. The will it work or won’t it stress is insane!

But you know, that skipping on feet that don’t hurt, through in the woods far away from a bathroom, doesn’t sound too bad either. Especially, if SG is waiting at a remote cabin without the kids.

** Update ** The doctor came back and right away signed off on the prescription refill. I’m not sure he was happy with super nurse calling and giving me doubts. He’s a good man!


22 thoughts on “When my Paranoia is Validated

  1. I don’t know how you can form a “feels real to me” attachment to someone you don’t know but I have. I really, truly pray for your good news.

  2. hoping for good news for you so that you can kick our old ‘friends’ paranoia and scanxiety to the curb for another few months. Hugs my friend (as b a seagull says- you are very real to me too)

  3. Wow. I am praying and hoping and praying hard for you. And I’m not really a prayer-ful type of person. Keep us posted, and keep venting away. Especially if it’s those two sided conversations in your head – those are fun to read. (Ugh – nothing about this is fun, but you know what I mean – they’re so real and candid and honest.)

    • I’m starting to worry they’re too candid and honest. Thanks for the prayers too – I’m also not a real prayer-full type of person but i still appreciate them. Any good energy in the universe is a good thing. Thanks!

  4. Dear Annie – I have a very dear friend fighting a similar battle. I send you fistfuls of strength, heartfuls of love, and endless amounts of healing energy. You, as you are, are a precious gift to your family and friends and to those of us who come here to read your open book. Breathe deeply this day and all the days to come.

  5. TOO open? Well, that’s for you to say, not me. But personally, as the mother of teenage boys (15 and 13), I *loved* the “Mom, Promise Me You Won’t Ever Say Clitoris Again!” post!!

    As with my other favorite blogs, I come here for connection to the real world – laughter, sorrow, goddamned irritation, the experience of nodding my head and sighing – “yeah, I get that…”

    So, open your book to whatever degree feels right to you. Just don’t crack the binding. My Mom always did that, and it really bugs me.

    Love, Andrea

  6. Oh, I’m crying hot tears of shame, for how much I take for granted. How much I have, and don’t even think about it.

    Don’t get me wrong, please, I do not come here out of pity for you…I come here, because we are on this planet together. And I can send love and thoughts your way, and you can remind me that the world is not all about me.

    Thank you so much, and I hope you have a good scan. Because, I , too, just like the ones above, have formed a very real attachment to you.

    It’s your openness that has allowed us in, and created intimacy.

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