My CRC with liver mets journey

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sun Jun 30, 2019 8:37 pm

I am not sure what you mean about playing my “c card.” Unless you mean that my husband has taken them up on their offer to do “whatever he needs to do” to take care of me? Is saying he would like to accompany me to NY for my surgery “playing a c card?”

This is a small company, less than 20 people.

I think all the complaints are ridiculous and certainly not fireable offenses. But I think boss has “confirmation bias.” His wife has convinced him that my husband is ungrateful and not committed, and now he overvalues data to support that theory and disregards data that would suggest otherwise.

We have no intention of going into litigation. I think best we can hope for is a separation agreement that gives my husband enough time to find something better.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

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Maggie Nell
Posts: 1151
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: My CRC with liver mets journey

Postby Maggie Nell » Sun Jun 30, 2019 11:29 pm

ginabeewell wrote:
I am not sure what you mean about playing my “c card.” Unless you mean that my husband has taken them up on their offer to do “whatever he needs to do” to take care of me? Is saying he would like to accompany me to NY for my surgery “playing a c card?”

His wife has convinced him that my husband is ungrateful and not committed....



Seems to me like when the permission was given "do whatever you need to do" it came with an invisible codicil : a defined time limit, an assumption or expectation that this would be a short-term crisis like 3 months max but preferably only six weeks. Yet a full year hasn't even passed since you received your first chemo and your lived reality is unfolding to it's own time frame has blown a raspberry to that company memo.

Definitely something else going on. As The Wife had declared a personal vendetta, compared to her crisis of marital infidelity and that whole tango of promises made with shit-eating grins, the challenge that you and your husband are living through as a solid unit, must be pressing her buttons. Deep down this woman knows that if she was in your shoes, gina, she wouldn't be able to rely on her husband at all - he'd be out the door. That be her Achilles' heel.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: My CRC with liver mets journey

Postby stu » Mon Jul 01, 2019 2:03 am

Hi Gina ,

So much stress for you both to navigate .

She holds power without position . She may even succeed in the short term. But sounds as though her own foundations are not too solid if you have to resort to such behaviour .

I have limited business acumen to offer but your both intelligent people . I know you will navigate the best way forward . A point Utwo highlighted you now have time to analyse their angles and you can get a step ahead of them .

Take good care of each other and together I just know you are going to find a way through this .

Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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ginabeewell
Posts: 565
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Re: My CRC with liver mets journey

Postby ginabeewell » Mon Jul 01, 2019 7:11 am

Yes and yes! Much insight from both of you. And yes we will get through it together.

My husband had a stunner line this morning in the shower:

“You guys have it easy. If you don’t want to deal with cancer, all you have to do is fire me.”
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: My CRC with liver mets journey

Postby Pyro » Mon Jul 01, 2019 7:27 am

ginabeewell wrote:Yes and yes! Much insight from both of you. And yes we will get through it together.

My husband had a stunner line this morning in the shower:

“You guys have it easy. If you don’t want to deal with cancer, all you have to do is fire me.”


This sucks, we don’t need added stress on top of this damn disease. I’d at least get an attorney to protect any exit package he may be due, the threat of it may be enough.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

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Maggie Nell
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Location: Central Highlands, Victoria, Oz

Re: My CRC with liver mets journey

Postby Maggie Nell » Mon Jul 01, 2019 10:59 am

ginabeewell wrote:
Partner was his best friend in addition to creative partner / boss. [...] The latest is a note that basically sets him up to be fired for cause (he’s a partner so if he’s fired for cause, he loses his stake in the company). Among the Lolla incident, it questions his “commitment to the company and his craft” and basically says things haven’t worked out since my diagnosis. That he and the partners feel “frustrated and taken advantage of.”



There are other partners in this company as well as this 'bestie' who feel "frustrated and taken advantage of"? If your husband
does leave the firm then there's not going to be anyone with a backbone, brain and balls at the top....

A classic killer line is Et tu, Brute?
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

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ginabeewell
Posts: 565
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Re: My CRC with liver mets journey

Postby ginabeewell » Mon Jul 01, 2019 1:55 pm

Well, my husband had a conversation with one of the other partners today, and it seems this is de-escalating dramatically (good in the short term if not something that we still need to consider in the long term).

The net is that it's only boss/partner who has an issue, but the issue is impacting the other partners (because boss gets pissy and then everyone suffers).

That issue really doesn't have anything to do with my cancer. It's more a function of the frustration that he feels that they are no longer working as true creative partners the way they once did - something my husband has been wishing they would do more as well. The agency has gotten more and more busy, and the default has started to be that the two of them divide and conquer. The big creative concepting is going to the boss, and my husband is running lead on basically everything else: production, meeting coverage, client management, etc. So boss is feeling all the pressure of concepting - and probably not taking into account all the pressure my husband is feeling to keep everything else on the rails.

They've been saying for YEARS that they need to hire another team, and this might be the thing that finally gets them to that point.

The partner suggested that what really needs to happen is that husband and boss go into a room and just try to hash things out for a few hours.

The only thing we don't know what to do about is boss's attitude regarding vacation. The other partner said, "I don't know what to tell you. If any of us take vacation, it's fine. But when YOU take vacation, he freaks out. He hates that you take vacation. It makes him feel all alone."

"Ok, but you do realize that I need to take vacation, right? How do you suggest I handle that?" The last time there was a vacation issue, my husband suggested they shut the place down for a week so they could ALL take a summer vacation at the same time, a suggestion that was shot down immediately as insane. Partner had no advice here and agreed boss's reaction was messed up. Same goes for the whole wife thing - that's not going to get resolved any time soon.

So honestly, I'm going to keep husband working on a parallel path. Maybe things can be fixed in the short term, but I think there's still a LOT in the equation that suggests he needs to protect himself.

I very much value all the listening ears and advice. I'll probably at the end of the day go do some heavy deleting / editing for the sake of privacy, but please know how much I have appreciated all the input!!!
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

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

Re: My CRC with liver mets journey

Postby Maggie Nell » Mon Jul 01, 2019 11:58 pm

ginabeewell wrote:Well, my husband had a conversation with one of the other partners today, and it seems this is de-escalating dramatically (good in the short term if not something that we still need to consider in the long term).

The net is that it's only boss/partner who has an issue, but the issue is impacting the other partners (because boss gets pissy and then everyone suffers). [...]

The only thing we don't know what to do about is boss's attitude regarding vacation. The other partner said, "I don't know what to tell you. If any of us take vacation, it's fine. But when YOU take vacation, he freaks out. He hates that you take vacation. It makes him feel all alone."


This is an encouraging development : input from at least one of the other partners. A rational voice in the bewilderness and what a revealing perspective.
Seems like your husband is being expected to parent a fifth child and this grown-ass man who is leaking energy all over the place. Never a good look.

Rather discriminating that others don't catch a guilt trip when they put in for vacation leave.

Keeping in mind a solution-orientated path that is a win-win for the individuals and the collective, one path would be for your husband to 'hash it out' with the bestie, in the presence of an experienced mediator/organizational psychologist who can keep the dialogue productive. Ascertain the "barriers", tackle the pocket of stagnation, air the grievances and get everyone on the same page with non-negotiables, deal-breakers and personal boundaries, and also with developing an emotionally mature style of communication.

That issue really doesn't have anything to do with my cancer. It's more a function of the frustration that he feels that they are no longer working as true creative partners the way they once did - something my husband has been wishing they would do more as well.


Going out on a limb here, another suggestion, is that they get their birth certificates in hand and have the transformation of their creative partnership
interpreted through the conceptual model of astrology; their synastry. There are many professionals in the USA who have dual qualifications in Jungian analysis and psychological astrology who are very skilled in the healing arts and it's an approach that nurtures the creative pulse.

Perhaps the creative partnership and the way these two males once worked together can be reimagined and they can get back to that sweet spot.
Maybe they need to take a vacation TOGETHER and go drink peyote and have a vision quest.
Maybe pyro will drive up to Chicago in his flash car and take them for a spin around the lake.

Everything is possible.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

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ginabeewell
Posts: 565
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Re: My CRC with liver mets journey

Postby ginabeewell » Thu Jul 11, 2019 6:45 pm

Maggie Nell wrote:Maybe pyro will drive up to Chicago in his flash car and take them for a spin around the lake.

Everything is possible.


I don't think Pyro would have to go that far. They will be in LA the week after next, perhaps THEY can come to HIM!

I am gearing up for my first of two liver resections at MSK, which will be happening next Wednesday the 17th. We will fly out next Tuesday and stay through my follow-up appointment the 29th.

I feel more settled approaching this surgery versus the first one, which is a relief. I've been told to expect to feel worse coming out of it, as it cannot be done laparoscopically. But I know that walking all around NY during my recovery made a big difference, and that is my plan this time around. Hope it isn't too hot!!

Due to the work drama, my husband is going back and forth from NY to LA not once but TWICE during the time that I am there - a day trip two days after surgery and a few days for a shoot the week after. My sister is coming out to cover his first departure, and my mother the second. She was there for my second week of recovery last time, and it was so great to have her kicking my butt out of the apartment and out walking. We were walking 2.5 miles a day by the end of my time in NY.

My husband posted on Facebook to see if anyone wouldn't be using their apartment for the week, and we got an offer to stay with a former colleague of his, who apparently just purchased a new three bedroom condo on the Upper West Side overlooking Central Park. She sent a few pictures, OMG. We must know good people, because we got ridiculous places to stay for my last surgery, too - two other three bedrooms in amazing areas. Thank goodness she responded, because hotel rates were crazy high, especially for anything that had kitchen or laundry facilities. She has a young daughter who went through treatment at MSK. It's a testament to my husband that she offered this to him after working with him for a "hot second" (his words) many years ago, and not keeping in touch since then save Happy Birthday greetings on Facebook.

One of my coworkers texted him too, to say that our company's EC (of which I am part) would pick up the tab for our stay if we opted to rent an apartment through Airbnb or VRBO. Have to say, that offer felt amazing after the drama of my husband's crazy work situation.

Overall, feeling good and optimistic and ready to get this show on the road!!
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

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juliej
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Re: My CRC with liver mets journey

Postby juliej » Thu Jul 11, 2019 7:33 pm

ginabeewell wrote:I am gearing up for my first of two liver resections at MSK, which will be happening next Wednesday the 17th. We will fly out next Tuesday and stay through my follow-up appointment the 29th.

I feel more settled approaching this surgery versus the first one, which is a relief. I've been told to expect to feel worse coming out of it, as it cannot be done laparoscopically. But I know that walking all around NY during my recovery made a big difference, and that is my plan this time around. Hope it isn't too hot!!

I agree - walking in NYC was critical to my post-surgery recovery! For my first surgery I had a very long abdominal incision (54 staples!) from breast bone to pubic bone. Having to walk up and down the stairs to the subway almost did me in. I had to stop and pant at every landing. But I got stronger very fast because of having to push my body. My apartment was just a few blocks from Central Park and I walked there at least once or twice a day. My surgeon's notes even say "patient walking 5 miles daily in Central Park". :D

My family doesn't live in the US so I didn't have anyone there to help with things. So MSK sent someone from the Visiting Nurse Service of New York (VNSNY) to my apartment and she helped change my bandages, took vitals every day, etc. But when I needed to get groceries, rent a movie, etc. I had to walk there on my own on the very crowded sidewalks and bumpy streets. That (and eating lots of protein) ended up being the best way for me to recover!

I'll be thinking of you next Wednesday! Don't think of the pain afterwards. Just concentrate on this being one more step on the road to NEDsville! You got this!

xo,
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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ginabeewell
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Re: My CRC with liver mets journey

Postby ginabeewell » Fri Jul 12, 2019 10:24 am

juliej wrote:I agree - walking in NYC was critical to my post-surgery recovery! For my first surgery I had a very long abdominal incision (54 staples!) from breast bone to pubic bone. Having to walk up and down the stairs to the subway almost did me in. I had to stop and pant at every landing. But I got stronger very fast because of having to push my body. My apartment was just a few blocks from Central Park and I walked there at least once or twice a day. My surgeon's notes even say "patient walking 5 miles daily in Central Park". :D

...But when I needed to get groceries, rent a movie, etc. I had to walk there on my own on the very crowded sidewalks and bumpy streets. That (and eating lots of protein) ended up being the best way for me to recover!


That's actually super encouraging. I had to laugh at your "rent a movie" reference, I guess these days nobody has to walk anywhere to do that!!

A few days after my last surgery, I made dinner. Just pasta and a salad, but I remember feeling so good that I was able to mobilize myself enough to make my own food for my mom and husband. I did make the mistake of trying to haul the huge pot of water for the pasta, but I won't do that again!

The last time my mom came, we were down near Nolita post-surgery, so I am looking forward to being on the Upper West Side with her. She hadn't been to NY for over 40 years and really enjoyed exploring the city by foot. A few blocks from our apartment, we found a Chinese dumpling place where we got 10 dumplings, soup, peanut butter noodles and three drinks - for $11!! I'll be excited to see what there is to discover in a new neighborhood. If anyone has any recommendations, I'll gladly take them. And weirdly for all the walking we did last time, we never made it to Central Park - one of my coworkers told me to get a map and try to walk all of it before we head out.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: My CRC with liver mets journey

Postby mpbser » Sat Jul 13, 2019 5:12 am

Just popping in to say that I caught up with this thread and can completely relate to the work issues you've described. I think Maggie Nell hit the nail on the head with her analysis. My husband's boss feels like a ship without a sail and a fish without water whenever my husband needs to take time off. They have been friends for nearly three decades.

I wish you the best with the upcoming surgery! Keep us posted!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

hopefulandstrong
Posts: 58
Joined: Fri Apr 19, 2019 7:11 pm

Re: My CRC with liver mets journey

Postby hopefulandstrong » Sat Jul 13, 2019 9:15 am

Sending you all the best for a successful surgery!
54, female
1/8/19 DS Stage 4 with Liver Mets; Successful Colon Resect
2/18/19 Started Folfox -- CEA 70
5/8/19 - BRAF mutation -- switch to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
8/29 - CEA jump to 30-- scans reveal liver spread, though still confined. triplet therapy abandoned; some concern about PIC3 mutation interfering with BRAF treatment
9/1 - 10/4 -- no treatment
10/4 -- folfoxfiri to stem further progression; pump placement in January (hopefully)

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juliej
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Re: My CRC with liver mets journey

Postby juliej » Thu Jul 18, 2019 5:43 pm

ginabeewell wrote:And weirdly for all the walking we did last time, we never made it to Central Park - one of my coworkers told me to get a map and try to walk all of it before we head out.

Since my apartment was just a few blocks from Columbus Circle, my first walk after surgery was from the Merchant's Gate (Central Park South and Central Park West) to the Pond and back home again. I sat on one of the benches at the Pond to rest before I started back. Then I promptly fell asleep on the couch when I got home!

Before long though, I was exploring all of Central Park. Get a map and figure out different routes (and note where restrooms are located!). Some areas, like The Ramble, are really wild. It's hard to believe you're in the city! Other areas are just awe-inspiring, like the Angel of the Waters statue at Bethesda Terrace. In the summer there are lots of tourists, especially on the weekends so try to go during the week instead.

I was also there in the fall and winter and it was quite beautiful with snow covering everything. One more thing: I never felt unsafe there even though I was alone. I often walked though the park late at night in the moonlight after going to a movie at the AMC Lincoln Square movie theater on Broadway.

Oh, and don't forget to check out Strawberry Fields with the "Imagine" mosaic. The Dakota (where Yoko Ono lives) is right across the street. Sometimes I would see her coming back from a shopping trip. Actually, if you go at odd times or in the "off season," you're likely to run into a fair number of celebrities out walking their dogs or getting exercise in the park. If you do see a celeb, just walk by and at most give them a smile and a nod. Most NYCers don't harass them, which is why they choose to live here. Be cool. ;)

It's a big park so take a map with you. One navigation trick to know: each lamp post has four numbers at its base. The first two numbers tell you the nearest cross street (so, for example, an 82 would mean 82nd street) and the next two numbers tell you whether you're closer to the east or west side of the park. Even numbers mean east, odd numbers west. By the time I was way over at Harlem Meer, it was easy to lose my bearings so I used the lamp posts to give me a clue.

After your walk go to Bouchon Bakery in Columbus Circle for a chocolate bouchon or a pistachio macaron (or both!).

Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Thu Jul 18, 2019 8:05 pm

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!
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts


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