The Colon Club

So good to hear an update from you, Gina! Sorry this recovery is taking longer. But man, your body has been through a lot this year! I hope you have lots of cozy plans this Christmas. Honestly, Jesper and I had a pretty cozy time during this last chemo. Christmas movies on Netflix, lots of candles because it starts getting dark around 3pm here, and lots of warm drinks. Sounds like your lake house is the perfect place for that.

Hugs and stars to you from Copenhagen

Well, over Thanksgiving weekend, I decided to go back to work the following week - no matter how I felt. I was really starting to get mad at myself and being alone at home didn’t help.

Not sure if it was the act of returning or the fact that I was suddenly 7 weeks out, but I FINALLY feel human again. My appetite was ok for most of the week; then on Thursday i was actually hungry, repeatedly, throughout the day.

This past Friday I had a drain replacement procedure. And Dr Kingham wanted to look for a bile duct leak and put a drain in there too - he’s not happy with the amount still coming out of my drains. Well, the surgeon couldn’t find it, so I woke up to news of there needing to be another procedure - where they go in via endoscopy and put a stent in where my bile duct meets my stomach.

I was there today for follow ups and a meeting with Kemeny to discuss this - and they managed to get the second procedure scheduled tomorrow morning! So we are sticking in NY to get that done.

Dr Kemeny confirmed my last scan was clear, so she’s not worried about me taking time to heal. Sounds like chemo would resume after the holidays. So our trip to Instanbul looks like it’s on! And plenty of holiday eating to get my weight up. : )

I would love to go there . I watch a lot of TV shows based there .
Glad to hear your good news . Have a great time .
Stu

Checking back in with an update:

Istanbul was very cool! We only had three nights and two days there, but the historical sites are concentrated in one area. We hired a guide for half a day and that was the highlight of the trip. The guides in Turkey are required to go to college to get their certification; so she was extremely knowledgeable and was able to provide great context to the beautiful places we saw.

The next day we went to the Grand Bazaar and the Spice Bazaar. We were in search of towels - you would think they would be everywhere in Turkey! - but mostly the offerings included fake designer handbags. We wound up buying a lot of almond-studded Turkish delight.

I was worried about the food, but it was delicious, and I am still thinking about the lamb kebabs on eggplant yogurt I had our first night there (and I don’t even like lamb!).

We walked a TON, and right around this time I started to feel really sore in my muscles and joints too. But it lasted for weeks - in fact I’m still feeling it - and I started to suspect I might not have enough of something in my system. I checked out as low in magnesium and iron and had infusions of both, and am feeling a little better now.

We are on our way to MSK for a big week:
Saturday (today): stent removal procedure
Sunday: CT scan
Monday: appointments with Drs Kemeny and Kingham and hopefully a return to chemo!
Wednesday: drain replacement procedure

My drain output is now down to 5-10 ml a day, very low output. But Kristina, Dr Kingham’s nurse, said she thought he would insist I keep the drain in until it is actually DRY. Ugh!! I guess at least it is moving in the right direction.

Feeling nervous about the CT scan: it’s now been over three months since I had chemo, which feels like too long. Every pain I feel seems like a potential met.

My “cancer buddy” who has pancreatic cancer, got an NED coming out of surgery in early November. But this past week, her cancer markers tripled. She’s resuming chemo and is seriously bummed as she tries to come to grips with it all. “I knew it could come back, but I didn’t think it would be so soon.” I feel terrible for her, and scared for myself, as it is hard to not feel like our fates are intermingled.

Glad you had a great trip. Hope all goes well this weekend.

ginabeewell wrote:it is hard to not feel like our fates are intermingled.

I like to think of myself as a very empathetic person where DH is concerned. I feel a lot of random things and when I talk to him about it its something that he's feeling or felt. It makes me nervous sometimes.

Recently though DH lost his grandmother, mid week last week. Tough woman, she'd had a stroke and wasn't found for 2 DAYS. Her health improved in the hospital she wanted steak and more importantly to go home and all of the sudden she called in hospice. My husband became freaked out, he's doing well now (seemingly... on the outside) could he just stop progress tomorrow like that. I tried hard to remind and reassure him she was just shy of 85 and her frail body had been through a lot that's different from what he's going through.

Just wrapped up my day at MSK, and suffice to say it was not the day I expected!

Scanxiety hit in a big way after yesterday's scan - I got so worried I think I freaked my husband out, because I don't usually get that worked up. Going into the day's appointment, we were hoping for 1) a clean scan, 2) clearance to resume chemo and 3) approval for my drain to come out. But that was a tall order so I joked I would be happy with even one of the three.

Dr Kingham came in first and told us the scan looked good. He was optimistic about the drain coming out, but wanted me to maintain Wednesday's appointment with IR - "They will either pull it or reposition it depending on what they see - but even if they do the latter, I would think it would be out within the next two weeks."

Great! I'll take it.

Then Dr Kemeny came in, and after a little check-in, I told her I was hoping to start chemo today. "How long have you been off now?" she asked, and then left the room to look at a calendar. When she returned, she told me that the point of mop up chemo is to start right after surgery, because you don't know what will happen. In my case, it's been more than three months, so she doesn't see the point of resuming chemo. She wants to just monitor me with CT scans every two months.

I about fell off my chair - this is the LAST thing I was expecting!

It feels a little scary - I think the chemo maybe provides a false sense of security - and maybe too good to be true. I'm still trying to process, I guess. Anyway, now trying to decide where to have a little celebratory dinner in light of the news!!

ginabeewell wrote:It feels a little scary - I think the chemo maybe provides a false sense of security - and maybe too good to be true.

Great news! Congratulations

I think what you’ve said above is very accurate. I had surgery, did my standard adjuvant chemo, then had another liver resection for a small spot. I asked my onc for more chemo and he refused - he said there is basically no established evidence of any benefit of ongoing chemo (beyond the standard adjuvant) in stage IV once NED, and refused to give it to me. I do think there is a large mental component to this - it’s a terrifying disease and we feel like we should be doing “something”. Sometimes acceptance and doing ‘nothing’ is the hardest part (actually though are you doing something - active surveillance, plus healing and living your life!).

Enjoy the celebration!

Rock_Robster wrote:I do think there is a large mental component to this - it’s a terrifying disease and we feel like we should be doing “something”. Sometimes acceptance and doing ‘nothing’ is the hardest part (actually though are you doing something - active surveillance, plus healing and living your life!).

That's exactly it. And you know the old "pride comes before a fall" - it's like I don't want to celebrate too much or tell too many people for fear of jinxing it. (Cue my mother telling me she doesn't believe in jinxing, things either happen or they don't - which I KNOW is true, but...)

I was so wired / worried last night I tossed and turned the entire night. Hoping that things sort of settle in today. Tomorrow I'll head to IR for either a drain pull or replacement. I'm almost afraid to hope they will pull it, it would be like all my cancer dreams coming true!

ginabeewell wrote:I was so wired / worried last night I tossed and turned the entire night. Hoping that things sort of settle in today. Tomorrow I'll head to IR for either a drain pull or replacement. I'm almost afraid to hope they will pull it, it would be like all my cancer dreams coming true!

Good scan, no adjuvant chemo, and maybe - just maybe - the freaking drain will be coming out too! That's a triple hitter!

Even if they don't pull it tomorrow, he said it'll be out soon so hang it there. Things are looking up - way up!!!

Juliej

juliej wrote:Good scan, no adjuvant chemo, and maybe - just maybe - the freaking drain will be coming out too! That's a triple hitter!

Even if they don't pull it tomorrow, he said it'll be out soon so hang it there. Things are looking up - way up!!!

Juliej

Thank you - you kept me sane through this journey on more occasions than I can count. Not just as an inspirational story but with real concrete experiences to help me feel like the stuff I was slogging through was truly just temporary. Maybe someone did the same for you, and if they did, you know what a big deal it is. Just wanted you to know how much I appreciated it.

So happy for you, Gina!!! What amazing news.

Gina I worry about the mop up time frame with my hubby he hasn't been back on systemic since before surgery just the hai

juliej wrote:Good scan, no adjuvant chemo, and maybe - just maybe - the freaking drain will be coming out too! That's a triple hitter!

The drain is out! And, like yours, my body just sort of pushed it right out when they went to remove it. I wore a tight dress to the office today for the first time in three months. Yippee!

Mohrfamily wrote:Gina I worry about the mop up time frame with my hubby he hasn't been back on systemic since before surgery just the hai

I can totally appreciate that. As the calendar slipped away while we were waiting on chemo for my drains to be out, I started to get more and more stressed about not starting my mop up chemo. And now that I know I won't have it, I'm sort of terrified - but I know part of the issue is that chemo gives a false sense of confidence that you're at least doing something. I just have to keep reminding myself that the confidence is false.