Another spot… ablation ahead

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ginabeewell
Posts: 545
Joined: Wed Oct 24, 2018 10:30 am

Another spot… ablation ahead

Postby ginabeewell » Sun Jun 26, 2022 2:13 pm

Well, I had a few months of NED in at least. And the plan isn’t chemo. So I can’t be too upset - but of course still upsetting.

I was grumpy for a day; then felt way better; then fell all the way apart as unexpected delays created a situation where I wasn’t able to tell my twins what was up (they were at camp when we got the news).

Realized that I’m mostly feeling foolish for believing on some level that a healthy, healed me awaits on the other side of this journey.

Wrote what I think may be one of my favorite posts about it here:

https://www.weareallmadeofstars.net/post/optimistic-af
48 YO mom of twins (10) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis; largest met down to 5 cm
1/18 Resume chemo (6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (9-19) FOLFOX (no OX) + Vectibix
7/19 liver resection
10/19 liver resection 2
1/20 NED!
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
Then disappeared,reappeared,radiation and now back to NED

weareallmadeofstars.net/favorite-posts

roadrunner
Posts: 271
Joined: Sun Jan 12, 2020 8:46 pm

Re: Another spot… ablation ahead

Postby roadrunner » Sun Jun 26, 2022 8:32 pm

Sorry to hear this. Good to hear you have a sound plan already and great perspective as well! Perhaps the shock of the “re-entry” and your rapid reset shows you did a good job of getting to a good head space while NED and then rebalanced optimally when challenged? If so, that bodes well for the future, I think.

Way back in college, my sculpture prof told me a (perhaps apocryphal) story about meditation. He said some scientist fired a pistol blank close to a mediating Buddhist monk while measuring electrical activity in the brain. In the story, the monk’s brain activity shot way up and then snapped right back down to where it had been. An ordinary person would have remained alarmed and agitated far longer. True or not, I think it’s a good model for dealing with cancer whack-a-mole. And as I said above, sounds like you’ve got a good plan here. From reading your entertaining blog post on it, it seems like you’ve already got the bad vibes on the steep decline.

Also, as someone who has never felt comfortable with the “fight” frame, I liked your post’s attempt to reimagine that. I agree that there’s lots of learning and wisdom, not really things that come from “fighting” per se. To me, it feels like sailing through a storm at sea. I hope to be exaggerating yarns and spouting maxims about it many years from now, safe in port with a Guinness or a strong coffee in my hand.
7/19: Rectal cancer: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Thoracic CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign

Nor Cal
Posts: 63
Joined: Sun Dec 06, 2020 8:18 pm

Re: Another spot… ablation ahead

Postby Nor Cal » Mon Jun 27, 2022 6:05 pm

Great blog post, Gina. I got a lot out of it. Best of luck with your next treatment.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 34 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

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ginabeewell
Posts: 545
Joined: Wed Oct 24, 2018 10:30 am

Re: Another spot… ablation ahead

Postby ginabeewell » Mon Jun 27, 2022 10:21 pm

roadrunner wrote:Also, as someone who has never felt comfortable with the “fight” frame, I liked your post’s attempt to reimagine that. I agree that there’s lots of learning and wisdom, not really things that come from “fighting” per se. To me, it feels like sailing through a storm at sea. I hope to be exaggerating yarns and spouting maxims about it many years from now, safe in port with a Guinness or a strong coffee in my hand.


I feel like there are two accepted postures when you are diagnosed with cancer: Warrior or Withdraw

One is all about fighting and the other is about hiding until you are done with the whole ordeal - and neither is particularly conducive to healing, when you think about it. I want to write a whole piece about just that - maybe next week, when we'll be heading to Norway on a two-week family trip! My husband's family is from there, and my twins and I have not yet been so we are super excited.

I really appreciate being able to share the blog here and super appreciative of any feedback anyone has on it. Most of my current "readers" are people who know me, and I'm curious whether it will find a broader audience over time - especially since it's starting to look like I may not be in my current role at work any longer...

Here's a link to all my favorite posts if anyone else wants to lurk; if you do sign up, you'll get notifications when I post updates. : )

https://www.weareallmadeofstars.net/favorite-posts
48 YO mom of twins (10) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis; largest met down to 5 cm
1/18 Resume chemo (6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (9-19) FOLFOX (no OX) + Vectibix
7/19 liver resection
10/19 liver resection 2
1/20 NED!
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
Then disappeared,reappeared,radiation and now back to NED

weareallmadeofstars.net/favorite-posts

saltygirl
Posts: 78
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Another spot… ablation ahead

Postby saltygirl » Tue Jun 28, 2022 9:30 am

Hi Gina,
Enjoy Norway. I love it there. It’s a beautiful country. Took my kids there few years ago. We are heading to Europe tomorrow for 7 weeks. Will be in Spain (son will be studying there), Croatia, Italy, Czech Republic. Daughter flying to see us from California as well. Life is good at least this summer…

DarknessEmbraced
Posts: 3700
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Another spot… ablation ahead

Postby DarknessEmbraced » Sat Jul 02, 2022 7:15 am

I'm sorry your cancer came back. *hugs* I hope your ablation goes well.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

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Maggie Nell
Posts: 1148
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Another spot… ablation ahead

Postby Maggie Nell » Sun Jul 03, 2022 11:40 pm

“Find a life worth enjoying; take risks; love deeply; have no regrets;
and always, always have rebellious hope."
~ Dame Deborah James (bowelbabe)
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception (ouchies)
Lymph nodes: 0/22
T3 N0 MX
Pending colonoscopy 23 March 2021
Unexpected severe allergic reaction to the prep...big WTF!?
To be rescheduled...

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ginabeewell
Posts: 545
Joined: Wed Oct 24, 2018 10:30 am

Re: Another spot… ablation ahead

Postby ginabeewell » Mon Jul 04, 2022 12:59 am

Maggie Nell wrote:“Find a life worth enjoying; take risks; love deeply; have no regrets;
and always, always have rebellious hope."
~ Dame Deborah James (bowelbabe)


This is definitely the energy I’m trying to embrace right now, especially as a mom. Here is the post I wrote about how scary it is to love deeply while dealing with cancer:

https://www.weareallmadeofstars.net/pos ... d-reaction

Not sure I’ve cried more than I did when I wrote this one…
48 YO mom of twins (10) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis; largest met down to 5 cm
1/18 Resume chemo (6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (9-19) FOLFOX (no OX) + Vectibix
7/19 liver resection
10/19 liver resection 2
1/20 NED!
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
Then disappeared,reappeared,radiation and now back to NED

weareallmadeofstars.net/favorite-posts

saltygirl
Posts: 78
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Another spot… ablation ahead

Postby saltygirl » Mon Jul 04, 2022 4:58 am

There is no perfect way to deal with cancer and having still dependent children. We all decide what works the best for us. I have found my own way. My kids are little older. So I decided not to involve them in my cancer. They know I have cancer. But don’t know the details. I have pushed myself to be as active as possible for them. So they continue to live their regular lives. So far they haven’t been effected at all. But who knows what the future will bring. It was a huge relief for me that my daughter is studying in college in another state. And doesn’t really come home. She is a D1 athlete and pre med. Is too busy with school, her sport, internships etc. It’s great that she is living her new life. I push my son to do the same. He is being recruited to play sport in college as well. And out of state. I am sending him to study in Spain this summer. We have almost no other family around. Just my mom in Europe. So they need to get use to being alone and independent. They will just have each other.

saltygirl
Posts: 78
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Another spot… ablation ahead

Postby saltygirl » Mon Jul 04, 2022 5:02 am

On other note hope your luggage made it to your final destination. Heathrow airport is a disaster now. Hundreds of luggage stuck daily.

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ginabeewell
Posts: 545
Joined: Wed Oct 24, 2018 10:30 am

Re: Another spot… ablation ahead

Postby ginabeewell » Mon Jul 04, 2022 5:58 am

saltygirl wrote:On other note hope your luggage made it to your final destination. Heathrow airport is a disaster now. Hundreds of luggage stuck daily.


We never check luggage - and this is exactly why! Although Heathrow is also zero fun to go thru baggage screening, as well: so I guess you can’t win!
48 YO mom of twins (10) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis; largest met down to 5 cm
1/18 Resume chemo (6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (9-19) FOLFOX (no OX) + Vectibix
7/19 liver resection
10/19 liver resection 2
1/20 NED!
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
Then disappeared,reappeared,radiation and now back to NED

weareallmadeofstars.net/favorite-posts

saltygirl
Posts: 78
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Another spot… ablation ahead

Postby saltygirl » Mon Jul 04, 2022 3:37 pm

I would never survive with just carry on. But we are here for 7 weeks. Heading to Spain tomorrow morning. Dropping off my son at school. Heading north with my daughter including hiking at the Pyrenees.

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ginabeewell
Posts: 545
Joined: Wed Oct 24, 2018 10:30 am

Re: Another spot… ablation ahead

Postby ginabeewell » Tue Jul 05, 2022 2:51 am

saltygirl wrote:I would never survive with just carry on. But we are here for 7 weeks. Heading to Spain tomorrow morning. Dropping off my son at school. Heading north with my daughter including hiking at the Pyrenees.


Seven weeks sounds like heaven! Hope you enjoy every moment.

Our evening was marked by a mass shooting in Highland Park, a community several neighborhoods north where we have many friends; one of my closest, a former boss, was at the parade and the texts he shared were terrifying. Earlier in the day, at the Munch Museum, I had done a piece of art: a star surrounded by the words “you are safe” again and again.

Now, it feels like nothing is safe.
48 YO mom of twins (10) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis; largest met down to 5 cm
1/18 Resume chemo (6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (9-19) FOLFOX (no OX) + Vectibix
7/19 liver resection
10/19 liver resection 2
1/20 NED!
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
Then disappeared,reappeared,radiation and now back to NED

weareallmadeofstars.net/favorite-posts

saltygirl
Posts: 78
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Another spot… ablation ahead

Postby saltygirl » Tue Jul 05, 2022 6:18 am

I am so sorry. We spent a summer in Chicago. That area is beautiful. Sorry for your friends. That must be very scary. My daughter would had been at the Parkland high school shooting if we didn’t move from FL. Can’t imagine her being there. It could really happen to anybody in the US. Enjoy your vacation.

JJH
Posts: 396
Joined: Mon Apr 24, 2017 7:26 am

Re: Another spot… ablation ahead

Postby JJH » Wed Jul 06, 2022 2:02 pm

ginabeewell wrote:...Highland Park, a community several neighborhoods north where we have many friends; ....

Gina -

You mentioned above that you have many friends in Highland Park. I was wondering if by any chance you knew of, or had heard about, a former Highland Park resident named Eric Roth. He was a long-time member here on this forum. Actually, he was one of the original members who registered here in 2007 under the screen name of Traveler001-- member #731, to be exact.

Traveler001 had made many trips back and forth between Illinois and Texas, because he was being treated at the MD Anderson Cancer Center there in Houston.

Eric passed away in 2014, but he left quite a legacy here, with many virtual friends here that were so sorry to see him go. He was such a source of fun and laughter while he was posting messages here.

If you're interested, you can read this eulogy submitted in 2014 by a close friend of his:
.
viewtopic.php?f=1&t=46170&p=336638#p336638


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