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Re: My CRC with liver mets journey

Posted: Thu Jul 18, 2019 8:22 pm
by AmyG
Omg, you had an open resection and you're up and at it already?

Can I get a HOT DAMN up in here??

Tell me all about it, as mine is up and coming. No date yet, but should have one soon.

Re: My CRC with liver mets journey

Posted: Fri Jul 19, 2019 2:42 am
by stu
Oh well done Gina . That’s incredibly good news to hear you are safely through the resection .
Doing laps too . What a star .
Wishing you a speedy recovery,
Stu

Re: My CRC with liver mets journey

Posted: Fri Jul 19, 2019 1:10 pm
by juliej
ginabeewell wrote:Surgery went well yesterday and I was already doing laps today - which I didn’t do after my last surgery for sure! Too bad it’s going to be so insanely hot while I’m supposed to be walking outside!

I’m going to make a few notes just in case we get some reasonable days... and start researching museums in the meantime!!

If I make it to Le Bouchon, I will be getting the foie gras!

Sounds like you're making a fantastic recovery!!! :D

I recommend the American Museum of Natural History. I got a membership there when I was recovering (and still have it) because it was a great place to walk around in both the heat and the cold. There are benches when you need a short rest and food available at several cafes and a cafeteria. The "T Rex" and "Unseen Oceans" special exhibits are both great! And if you've got kids, they'll absolutely love everything there!

Of course, there's the MET but sadly no MoMA right now. However, MoMA PS1 is open (and free on Friday nights from 4:00 to 8:00 pm). And there are many other excellent museums. Try to stay cool and make sure you hydrate!

Juliej

Re: My CRC with liver mets journey

Posted: Fri Jul 19, 2019 5:54 pm
by Maggie Nell
There's the American Folk Art Museum. The Aquarium would be nice and cool on a hot day, although probably
not in walking distance. Not that I would know, never been stateside. :roll:

Great to hear that you're going strong!

Re: My CRC with liver mets journey

Posted: Sun Jul 21, 2019 4:49 am
by ginabeewell
AmyG wrote:Omg, you had an open resection and you're up and at it already?

Can I get a HOT DAMN up in here??

Tell me all about it, as mine is up and coming. No date yet, but should have one soon.


I ran into someone here who had a resection the same day I did. They took 40% of his liver vs 15% of mine, and I’m sure his recovery was impacted by that. He said he was having a really rough time having the energy to walk etc. and it sounds like he keeps in better shape than me, so we chalked up the difference in experience we were having to the relative size of our resections.

I do know that walking during my recovery made a major difference for me, however; so I was very highly motivated to do it! I’m adding four laps a day so I was up to 12 yesterday (3 sets of 4) and will aim for 16 today. Hoping to check out today but I had irregular heartbeats last night so they may opt to keep me one more night.

Re: My CRC with liver mets journey

Posted: Mon Jul 22, 2019 1:42 pm
by ginabeewell
I did end up getting discharged yesterday (Sun) so it was a day less in the hospital than I had for the colon resection / pump placement.

We are in our friend’s apartment at 94th and CPW. Really she’s just a former colleague of my husband’s, but she saw his post seeking accommodations and said she knew there had to be a reason she saw it. Her daughter went to MSK for treatment when she was only four! She’s been a thoughtful and accommodating hostess.

We just walked from there to a burger place at Columbus and 85th so 10 blocks or so, not nothing in this heat and I thought I might die! I wasn’t much for conversation but we made it and can cab back. I ordered chicken soup and mashed potatoes. I know I need more protein but so far I’m eating what I can get down...

The pain is manageable between Tylenol and Oxi, and I’m trying to limit how much I use the latter. Looking forward to a big nap after lunch!!

Re: My CRC with liver mets journey

Posted: Mon Jul 22, 2019 5:27 pm
by juliej
ginabeewell wrote:The pain is manageable between Tylenol and Oxi, and I’m trying to limit how much I use the latter.

I don't know if they mentioned it, but alternating Oxi and Tylenol increases the effect of the Oxi. Try that and see if it helps. Also, make sure you time your outings to your med schedule. Taking an Oxi about 30 minutes before a walk/dinner/museum visit makes it much less painful to walk around.

Also, I was like you - very reluctant to take Oxi. Then my surgeon's nurse explained that I would heal much slower if I was in pain. So that was a wake-up call to not be afraid to take it when I needed it. And sure enough, my healing sped up afterwards!

Keep up the good recovery! :D
Juliej

Re: My CRC with liver mets journey

Posted: Thu Jul 25, 2019 12:52 pm
by ginabeewell
I have been having a tougher time with this surgery than my last one. I’m a week out and my appetite is still non-existent. I think that’s making everything else harder: I don’t have the energy to stay awake or walk.

I’m kind of blaming myself instead of giving myself a break. I mean I have a huge L-shaped incision and they removed chunks of my liver on both sides. But I didn’t work out ahead of it like I did the first time so there’s that.

This morning I finally took a pot mint and ate a reasonable breakfast. I also got high as a kite with my mom, maybe because I had taken an Oxicontin too? OMG embarrassing. Thank goodness she is a good sport.

I feel like walking again so I think we will go to Central Park this afternoon.

Re: My CRC with liver mets journey

Posted: Thu Jul 25, 2019 5:15 pm
by stu
Mmm my mum had not even been discharged from hospital at this stage . 73% removed right enough but she was barely awake at this stage .

I think you should take a wee bit of advise from my mum who advocated listening to her bodies needs . If it needs to heal by sleeping , so be it . If it benefits from a walk , great .

You have been beyond incredible but if you need to rest I for one think you have earned it . Also if you have had additional chemo since your last surgery then you need to factor that in .

Your doing great ,

Stu

Re: My CRC with liver mets journey

Posted: Thu Jul 25, 2019 10:02 pm
by ginabeewell
stu wrote:Mmm my mum had not even been discharged from hospital at this stage . 73% removed right enough but she was barely awake at this stage .

I think you should take a wee bit of advise from my mum who advocated listening to her bodies needs . If it needs to heal by sleeping , so be it . If it benefits from a walk , great .

You have been beyond incredible but if you need to rest I for one think you have earned it . Also if you have had additional chemo since your last surgery then you need to factor that in .

Your doing great ,

Stu


Thanks Stu. I had a good walk this afternoon but then we went out again after dinner to get ice cream and I could tell a few steps in I was overdoing it. My dress was rubbing my incision and nothing felt good. I told my mom and we took a quick walk thru a few blocks worth of park and came out at home. We rested several times.

Tonight I checked my iPhone and it said I went 2.5 miles today. Today was definitely a turning point for me in my healing so I am feeling happy! I think up until today there was a part of me worried if I could do this again but I know I can.

Really missing my husband though. He’s too busy at work to even text much. He shoots in LA tomorrow and then takes the red eye home.

Kemeny wants a CT scan on Sunday, and then we have follow ups with her and a surgeon (maybe Dr Angelica filling in for Kingham) and a pump fill. And then we go home.

Re: My CRC with liver mets journey

Posted: Mon Jul 29, 2019 12:00 pm
by ginabeewell
Just had my follow ups with Dr Kemeny and Dr D’Angelico (who filled in for Kingham). Everyone seems happy with the surgery and the healing.

The pathology for the tumor that was removed came back and it was 95.5% dead - which sounds good I guess? I mean not as good as 100% dead!! But everyone here seems happy about it. My scans hadn’t shown any shrinking since December, but this suggests the chemo was still working.

I told them I was having a tougher time bouncing back after this surgery vs my last one, and it basically sounds like that’s pretty normal.

My weight is down pretty significantly so they may put some steroids in my pump. Just need to get that filled and we can be on our way back home!

Re: My CRC with liver mets journey

Posted: Mon Jul 29, 2019 1:14 pm
by AmyG
You're doing amazing.

Re: My CRC with liver mets journey

Posted: Mon Jul 29, 2019 5:17 pm
by Zackattack
Keep up the great work and positive attitude! We're all on your side

Re: My CRC with liver mets journey

Posted: Mon Aug 05, 2019 10:39 am
by ginabeewell
I am now almost three weeks post resection surgery and starting to feel human. I got a reasonable appetite back a few days ago, and that made a huge difference. I even made it to Lollapalooza yesterday with all the kids! My husband got me a little transport wheelchair which helped us to jump the line in and always gave me a place to sit.

I didn’t make it the whole day, but we stayed for a few hours and then I took my 8-year-old son back home. The other three stayed with my husband to see Arianna Grande!

I had blood drawn today to see if I will be ready to resume chemo next Monday. Wrapping that up and then heading to the office for the first time in three weeks. I’m tired but going stir crazy at home; so glad to be heading back even if I don’t make it a whole day.

Tomorrow I am SO EXCITED, I made a brow appointment. Vectibix has made my brows go crazy, and after 7 weeks without chemo, my rash has finally settled down enough to go get them waxed. Maybe I’ll do a facial this weekend too. My derm wants me to start on the super high powered steroid on Monday when I restart Vectibix. The goal is to do that for two weeks and hopefully prevent the rash from breaking out this time. Dr Kemeny gave me a hard no when I inquired about Accutane, so let’s hope this works!!

Re: My CRC with liver mets journey

Posted: Tue Aug 06, 2019 1:00 pm
by kandj
ginabeewell wrote: Dr Kemeny gave me a hard no when I inquired about Accutane, so let’s hope this works!!


That is probably wise. Accutane is nasty drug when you are perfectly healthy with no ongoing treatments. Hopefully the cream your derm comes up with will help as well. Keep chugging water. It does wonders for the skin. Enjoy the facial!