Back on chemo

I’m not dead, so there’s that.

I started back on chemo about a month ago.  It is miserable, but it’s a different kind of miserable than what I was feeling a couple of months ago.  Maybe it’s a better kind of miserable.  I’m super tired on the chemo, for an entire week, and then I start to have some good days.  And then I have chemo again (every two weeks is the line-up).

When I say “super tired” I don’t just mean I need to take a nap.  I DO need to take a nap.  Or several.  But I’m also kind of just weak and slow and I can’t stand for a long time.  Heck, sometimes I can’t even THINK for a long time.  It is amazing how physical fatigue starts to creep into the mind.  There are days when the mental exhaustion is far worse than the physical.

Because chemo sucks and I want to improve my quality of life, I went to another oncologist in Mechanicsburg…based off a recommendation.  I expected the consult to focus on alternative means (high dose vitamin C, medical marijuana, etc.), but this guy ended up recommending different chemo regimens.  One, called metronomic chemo, is low-dose and pill-based.  The other option he suggested is to try chemo drugs that are meant for pancreatic or ovarian cancer, because he thinks my cancer is acting more like pancreatic or ovarian AND I have that BRCA2 mutation (ovarian and pancreatic cancers typically carry BRCA mutations).

This guy was interesting.  Extremely soft-spoken and pensive.  Like, he was thinking and problem-solving the whole time I was there.  Quirky.  Maybe that’s ok, and a good way to look outside the box.

My doc at Hersey did not agree with this guy’s recommendations – and that’s OK.  I’d rather her be honest with me.  But it STILL gives me some different options on the table, and something to research.  Because maybe we can tweak these recommendations to make them worthwhile.

Oh, and guess what.  My tumor markers went down.  Like, a lot.  CEA went down 75 points.  CA19-9 went down 200.  TWO HUNDRED.  I know I’m not supposed to play this numbers game, but when my doc told me how far the CEA went down, I cried.  Sometimes not all blood work pops up at the same time…so when that CA19-9 showed up, my nurse coordinator and PA literally came to find me at treatment to tell me.  (I think they are excited about these numbers, too).  I haven’t seen my markers DECREASE in well over a year, so this encourages me SO MUCH.  Are these exhausting days worth it?  Maybe.  At least for now.

Also – I just have to say thank you to everyone who has stepped up to help us lately.  The regulars, of course – mom, Liz, Pete, Thomas – but also Christi and Nicole and Alexis and everyone who’s been visiting or staying over or stopping by to play with Xander.  Thanks to the meal-makers and gift-card-givers, as you are saving me the stress and energy it takes to plan and prep meals.  Thanks for EVERYONE who texts me randomly to ask if I need something.  And thank you to some very special retired friends, Debby, Sue, Kristi – they have been taking my butt to and from chemo, they’ve been shopping for me, they stop to visit and keep me company…you guys are awesome.  Thanks to the friends who stop by for a beer and a a board game while I’m on stupid chemo.  And thanks to all of you who I’ve missed, because goodness knows I’ve missed someone.  Please know how much I appreciate EVERYTHING.  As much as I wish I didn’t need it.  That’s how much I appreciate it.

7 thoughts on “Back on chemo

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  1. Thanks for making me cry at work…good tears….Good NUMBER tears. ADMIRATION tears. GRATEFUL tears. Continue to hold you in my prayers!!!

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  2. I am reading this and smiling because I know how much those lowered numbers must mean to you right now! Yay, that the markers are lowering!! Just arrived back in PA, so now I’m at your service, my lady! Whatever you need, time to talk, a meal, a chemo buddy, whatever you need, just ask! Love you!

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  3. Me too…tears are flowing! I love you Maria…prayers as always…you are the one I pray for when I wake up in the middle of the night! 💖😘

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  4. Thank you for sharing your updates and thoughts and feelings. You inspire all of us to be truly thankful for each day !!! I am also nearby if you need any rides, shopping, sitting
    Or anything!!!

    So wonderful to hear your numbers!!!

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  5. Thanks for the update. While I don’t understand the numbers game, I am so happy for you that they are coming down. Best of luck and prayers continue. Hugs!!!

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    1. oh, the numbers game! They can sometimes track response to treatment with tumor marker blood work results. Not for everyone, but for me my markers have been pretty consistent with results. So the lower, the better!

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