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Re: My CRC with liver mets journey

Posted: Thu Oct 17, 2019 10:08 am
by Claudine
:D :D :D

Re: My CRC with liver mets journey

Posted: Thu Oct 17, 2019 10:26 am
by annieliz
Awesome! Congrats and best wishes for a speedy recovery from surgery! :D :D :D

Re: My CRC with liver mets journey

Posted: Thu Oct 17, 2019 5:34 pm
by AlexandraZ
Wow wow wow, I am so happy for you!!!! :D :D :D

You and Julie are the main reasons Jesper and I are going to MSK, I'm just wrapping up translating all his medical stuff from Danish to English.

Congratulations!!!!!

Re: My CRC with liver mets journey

Posted: Sat Oct 19, 2019 2:02 pm
by ginabeewell
Thanks everyone. I am three days out from surgery. No sign of complications, and they removed my epidural and my drain. I’m feeling both better and worse than prior procedures. I think the epidural has me feeling less constipated which is a good thing, and I haven’t had fevers on and off like last time. But I am soooo tired. Yesterday I walked four laps (two sessions) and today I walked three but it wiped me the heck out!! Even the prospect of showering isn’t appealing.

Before going through this, I reminded myself I needed to be patient. The first few weeks are just tough but by week four I was at about 85%. So I’m trying not to stress about being tired or having no appetite, knowing eventually I should feel better.

Ok just had a few bites of lunch and two glasses of milk. That’s enough for me! Time to nap again...

Re: My CRC with liver mets journey

Posted: Sun Oct 20, 2019 5:46 pm
by Mohrfamily
Gina that is so great to hear, I hope my hubby is as fortunate.

Re: My CRC with liver mets journey

Posted: Sun Oct 20, 2019 9:13 pm
by Utwo
I wish you faster recovery and the best luck!

Re: My CRC with liver mets journey

Posted: Mon Oct 21, 2019 3:47 am
by ginabeewell
Day four was discharge day, and I feel so much better even than on day three. The incision pain is manageable even hours after my Oxy dose is due - maybe a function of the fact that they cut open scar tissue at the same site as my last procedure?

Today was the first day I really felt like eating: I polished off a bowl of Kashi, happily, for breakfast; had yogurt and half an English muffin for lunch, and 2/3 of a slice of NY pizza for dinner. Admittedly that’s not so much in quantity, but a big emotional relief to WANT to eat vs just being able to.

We checked out around 2 pm and I had a glorious nap as soon as we got to our destination. Then woke up for a bit and napped until dinner. I don’t think I realized how poorly I had been sleeping at the hospital until these amazing naps! Now it’s in the early am hours, and I am up and down reading blogs, etc. So perhaps I did too much daytime napping!

Our first borrowed Brooklyn apartment is just steps from the Barkley Center - and thus, a Shake Shack and a Donut Plant. This bodes well for future eating!

Re: My CRC with liver mets journey

Posted: Mon Oct 21, 2019 9:53 am
by AmyG
I'm so happy for you!!

Re: My CRC with liver mets journey

Posted: Mon Oct 21, 2019 3:29 pm
by ginabeewell
AmyG wrote:I'm so happy for you!!


And THEN I tried to walk to lunch for the first time. Got totally winded and panicked and it all ended up with me sobbing in a taqueria and asking our server for a hug because I needed my mommy.

I had been feeling so good, but I think a part of me felt like I put all this weight on getting to operable, because nobody thought I could. And then you’re finally walking through your light at the end of the tunnel and realize it’s still so scary and unpredictable what will happen. So everyone around you is celebrating your “victory” and calling you a badass, and you are just keenly aware that while you may have advanced your position on the board, you’ve still got cancer on your tail.

I’ve been at this for over a year. Maybe I didn’t realize until now how hard it’s all been and will continue to be.

Re: My CRC with liver mets journey

Posted: Mon Oct 21, 2019 3:30 pm
by ginabeewell
Also I don’t know how many times I need to remind myself that my emotional stability is tied directly to how I am feeling physically. EVERY time this happens it’s because I got to a point where I felt like garbage.

Re: My CRC with liver mets journey

Posted: Mon Oct 21, 2019 4:00 pm
by stu
You are absolutely amazing . I think you are well entitled to a bit of a cry now and then . Maybe some more healing to get through but this has been one tough journey that you have endured . Take it easy , rest and sleep .
Stu

Re: My CRC with liver mets journey

Posted: Mon Oct 21, 2019 9:21 pm
by AmyG
If you ever find yourself in the middle of nowhere Arkansas, come on over and I'll give you a hug.

You might feel like reheated dog shit right now and nothing like a cancer fighting warrior princess, but you have come so far and did what they said couldn't be done. Are you NED now or are you waiting for confirmation?

You had the courage to start this journey, the strength to endure and the resolve to finish. Be gentle with yourself, but seriously you're doing wonderful. I hope to god they take your off of the rash causing med. Has that cleared up for you?

Take your time but you know from experience that it gets better. :D

Re: My CRC with liver mets journey

Posted: Mon Oct 21, 2019 10:21 pm
by ginabeewell
AmyG wrote:I hope to god they take your off of the rash causing med. Has that cleared up for you?

Take your time but you know from experience that it gets better. :D


My last chemo was my last Vectibix. So it’s been a few weeks off and it’s getting better. But based on what I’ve read about Dr Kemeny, I think she’s likely to want to maintain it during mop up chemo as it’s proven to have “worked” thus far.

I’m mad at myself because I know it takes time but I was feeling so good I just overestimated what I could do! But I should have known, I get winded going to the bathroom to wash my face.

Re: My CRC with liver mets journey

Posted: Mon Oct 21, 2019 11:51 pm
by Punky44
Just catching up but glad your surgery went well and continued good vibes during your recovery!

Re: My CRC with liver mets journey

Posted: Tue Oct 22, 2019 4:32 pm
by boxhill
So everyone is telling you you are a badass and a warrior and invincible and you are...but maybe you feel the need to live up to it and never give in? But you know, you need to be able to acknowledge fatigue and the need to rest and heal and act on it. It is not "giving in." It is being realistic and mature. You are in this struggle for the long term, not to prove how fast you can bounce back from a single surgery.

Yes, you can do it. But it's going to take time. We are all in this for the long haul.

Best of luck and big hugs to you.