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Ulcerative Colitis
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songlady
Veteran Member
Joined : Aug 2009
Posts : 3824
Posted 4/16/2022 5:46 AM (GMT -7)
Hi all, especially those I knew from back in the day. I hope you are all doing well. I "retired" a month ago, with the idea of going back to work part-time after relocating to a smaller house in an area we've always loved and have many friends. A week after the retirement, I had my routine, every 6 mo. CT scan (from colon cancer from almost 4 1/2 years ago; CRC was discovered when I had my colon removed and J Pouch formed) .. anyway, O joy, they discerned a soft mass between the intestinal surgery site and the right ovary.
Apparently my artificial hips (thank you, pred while in my 20s) cast a shadow on the pelvis in CT scans. In retrospect they could see that this mass had likely been there for "a while." The oncologist theorizes that some minute cancer cell evaded the chemo and took root. Path results will tell us for sure.
SO... I am having a hysterectomy day after tomorrow, with removal of this mass, with a GYN surgeon and also my colorectal surgeon there (to protect my J Pouch.)
Other than that, life has a lot of joy. I wish I'd done my J Pouch sooner, but I try not to beat myself up about it.
If you are celebrating holidays these days, I wish you good ones!
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1755
Posted 4/16/2022 6:01 AM (GMT -7)
Now wait a second? How can you"retire" at 39yo?? Seriously Song you are a warrior like Valli and many others on here. You lead by example and toughness. Just another darn bump in the road for you. I need another hernia surgery so cut me open again? Always something. My Mom used to say who the hell named it the "Golden Years"??? I'll pray for you and let us know how your making out. Vent if needed. Prayers and Love going out to you. Happy Holiday🙏😊🙏
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 1508
Posted 4/16/2022 6:20 AM (GMT -7)
Songlady,

So sorry to hear this. It sounds like you have your medical team developed and ready to help you with this.

3X is right, you are a warrior. You have helped many people posting on this site. I know that you've "got this". If you need to vent--we are here.

You are in my prayers. Please let us know how it goes.

Clo
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Old Mike
Veteran Member
Joined : Jan 2007
Posts : 4024
Posted 4/16/2022 7:23 AM (GMT -7)
songlady: Hope all goes well. Wow you have had this mess almost as long as I have.
Just in case you missed it,I now have a stoma.
Oldmike
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quincy
Elite Member
Joined : May 2003
Posts : 33328
Posted 4/16/2022 9:07 AM (GMT -7)
Truly sad to hear you're having to deal with cancer again. I hope surgery and recovery goes well. I admire your mental strength.
Please let us know how you're doing.

Huge hugs,
q
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songlady
Veteran Member
Joined : Aug 2009
Posts : 3824
Posted 4/16/2022 11:26 AM (GMT -7)
Thanks for the kind words, clo! I appreciate all prayers, positive energy and vibes!
Champ, I "retired" because it was more polite than saying "I quit" lol! But it was sweet, they honored me and made me feel very appreciated.
OM - OMG! I didn't know. I hope the stoma is treating you well!
Quincy: Yeah. I was terrified when the doc called to say they were ordering a PET scan "from skull to thigh."

But as he said, the good news is that it's only one spot.
I am really hoping they can just remove it all! I've got plans. We just sold our huge home of 23 years and have been very busy cleaning it out; we bought a smaller place several states away, near our adult kids, and we have plans!
The timing is a little tricky... the surgeons want me nearby for about 6 week post-op (and also don't like the idea of me driving the 250 miles, for risk of blood clots) , but our furniture is being moved and the closing is scheduled for weeks 4 and 5 of that! (Really, I should write a book!) We've figured it out, but... my head is swirling with all the transitions and issues, lol. The cat and I will snuggle in an empty house, in one of the recliners we're not bringing with us... (lol!)
Day before surgery is clear liquids, no carbonation. Then, just before the 2 hour pre-hospital cut-off, they want me to drink 12 oz of Gatorade or clear Ensure, to wake up my body to respond to the anesthesia and surgery. This is a new one on me; interesting!
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1403
Posted 4/16/2022 2:08 PM (GMT -7)
Will be thinking of you! So sorry to hear of another bump in the road for you! Hang in there and keep us updated!
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2535
Posted 4/16/2022 4:34 PM (GMT -7)
Oh no! I hope everything goes smoothly and you can enjoy your retirement for real.
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1755
Posted 4/16/2022 4:44 PM (GMT -7)
Song sounds like all the selling house , moving will keep your mind and body busy. Easy does it with everything. Nice that job honored you. Always a great feeling when people recognize your hard work. Let us know how your doing. Prayers and hugs going your way🙏🙏🙏
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16381
Posted 4/16/2022 6:14 PM (GMT -7)
Thanks for checking in. Glad they found it, hope it's easily taken care of and an easy recovery. Cheers!
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valli1234
Regular Member
Joined : Aug 2017
Posts : 446
Posted 4/16/2022 6:54 PM (GMT -7)
Songlady you got this. This is just a small hiccup on the road to full retirement. From what you said it sounds like it’s in one area so that’s good news and having both surgeons there is a relief .
Number one thing is to get you better and all the moving stuff will fall into place … it always does .
Keep us posted and I am saying prayers 🙏for you tonight Songlady you are in my thoughts and I know all will be ok because like all of us on here we are fighters. Xoxo 🐣🥰
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5747
Posted 4/16/2022 10:05 PM (GMT -7)
Songlady, I just plugged back into HW, having been preoccupied with Ukraine crisis for much of the past 6 weeks. So sorry to read that you need another surgery-- as if moving out-of-state was not enough distraction in your life. Will you have a TAH or can the procedure be done laparoscopically? RE oral intake shortly before Monday's surgery: in 2015 I needed to have a TAH due to malignant tumor in the fundus, and I was petrified thinking I'd have to do a colon purge beforehand-- but NO!!!! (Was permitted to eat normally 'til midnight the day before & took my UC med, then had liquid "breakfast" by 8 AM on surgery day, before reporting to hospital.) Post-surgery when I expressed gratitude to my gyn-onc surgeon for not having been obliged to purge-prep, she replied that it was a new way of dealing with things to help the patient recover more quickly. (Hurray, it worked for me, and I hope it will for you, too.) RE your delayed DX for current problem: my malignancy DX was delayed by position of the tumor, which didn't display on invasive ultrasound. (Ironically, cervix was fine!) You'll likely need a pain-pump overnight and then be back on your feet Tuesday mid-AM. Beaming positive vibes your way!!!!! Please keep us posted as time/energy levels permit. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
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songlady
Veteran Member
Joined : Aug 2009
Posts : 3824
Posted 4/18/2022 6:52 AM (GMT -7)
Thanks for all the encouraging words! OH, this is a TAH. The mass is between the ovary and the intestine. My CR surgeon will be there to take care of my J Pouch, as well as the GYN. (MY CR surgeon warned me that if a repair is necessary to the J Pouch, I'll have a temp ostomy for 6 weeks.)
I'll have a general anesthesia but also a block on each side of the belly, so I am not supposed to sense pain for 2 days, yay!
I'll pop in here hopefully by the end of the week. Thanks for being my cheering squad!
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1755
Posted 4/18/2022 9:05 AM (GMT -7)
You go girl
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18968
Posted 4/18/2022 11:41 AM (GMT -7)
Like others that have commented I'm so sorry to read this, however, I do admire your strength & attitude. You have a very busy schedule ahead of you no doubt, time will fly by before you know it.

Sending you positive vibes & prayers.
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ewafromwarsaw
Veteran Member
Joined : Jun 2013
Posts : 1423
Posted 4/18/2022 3:52 PM (GMT -7)
sending you lots of good energy and best wishes so that everything should go smoothly and you recover completely <3
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songlady
Veteran Member
Joined : Aug 2009
Posts : 3824
Posted 4/19/2022 6:47 AM (GMT -7)
Hi all - Well. First they did allll kinds of prepr; epidural placement, etc, for pain relief over the next few days... then (as planned) they took me in and started with a laparoscopic camera surveillance.

When I woke form the propofol, my belly hurt like heck and I was sure they'd done this huge incision. But it turns out that the way the cancer looked, all they did was some biopsies. Then they glued together the two tiny incisions.

When I woke up they gave me ginger ale and a muffin, removed the epidural and IVs, and home we went.

The doc told my husband that the cancer was like "grains of sand" - but we also know, from the PET, that it is confined to this one area. SO, I wait to hear about the next steps. Obviously this is not the easy resolution I was hoping for. But either my oncologist will come up with an idea here or maybe I'll go to some other place - there is a huge cancer institute not horribly far from where we're moving.

I ain't giving up! We'll figure this out.
I'll report back. Again, thanks for the positive wishes.
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1755
Posted 4/19/2022 1:58 PM (GMT -7)
Wow. Some drive thru surgery/procedure Us UCers are used to some of that. Song My Gastro said to me years ago the thing between your ears is a strong medicine. I believe that. You stay strong. Lots of people here care and luv ya. Keep us updated
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quincy
Elite Member
Joined : May 2003
Posts : 33328
Posted 4/19/2022 8:09 PM (GMT -7)
Good to hear the surgery went well and that it was contained to a small area.
When will you get the next plan of action...Im assuming it might be determined by what type of cancer it is?
Hugs,
q
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5747
Posted 4/19/2022 8:37 PM (GMT -7)
Gads! That's annoying to go through epidural placement, no picnic, and then they take it out to send you back home. Maybe they'll cancel the TAH contingent on biopsy results that gauge aggressivity of the malignancy. Likely better for your pelvic floor muscles if you can avoid it. Probably your belly ached from air pumped in during laparoscopy surveillance. Ginger ale, yuck! (That sounds very 1950s.) Best wishes for the remainder of your week as you hopefully rest up from the Propofol. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
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valli1234
Regular Member
Joined : Aug 2017
Posts : 446
Posted 4/20/2022 9:31 PM (GMT -7)
Confined to one area is good news. Glad to hear you were in and out so soon. Sending well wishes and thoughts. 🙏
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7212
Posted 4/22/2022 8:38 PM (GMT -7)
Sorry you're going through this.
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songlady
Veteran Member
Joined : Aug 2009
Posts : 3824
Posted 5/5/2022 6:57 AM (GMT -7)
Hi everyone -
Between doctors' appointments and packing up our home of 23 years for a 250 mile move... at least I'm not bored!
Pathology results show that this is a recurrence of the original cancer.
So, the game plan is that I am doing chemo again; slightly different mix of meds. The goal is to shrink the cancer so that eventually it can be removed surgically (and, OH, I'll end up with hysterectomy after all - they'll remove "anything" that could be the next place prone to the cancer cells taking root.)
So, chemo every 2 weeks; infusion at the facility for a few hours, and then I take home a canister for continued infusion over 46 hours. So I am carrying around this thing that looks like a cross-body bag (or tummy pack) with the gizmo in it, and have tubing up into my port. Last time I went through this, Dear Husband (the best!) learned to detach it and flush the port, so we could cut down on the bother of trips to the Doc. He'll do that again.
My first chemo was yesterday; detachment from this canister is tomorrow. This first time we'll go in so DH can have a refresher course in medical technology.

They're hoping for 4 months of this, but after 2 months (ish) I'll have a scan to check the progress of the cancer shrinkage. (Note: I am thinking positive here! I am not saying "if" it shrinks but "how quickly" it shrinks.)

The good news is that although the "grains of sand" are spread somewhat, they are in the same area (abdominal wall) and not on other organs (liver, lungs, etc.) And because this is 4+ years out, apparently this cancer has not been as aggressive as they might have otherwise thought.

I've decided to come back and continue at my present facility for the first 2 sessions after our move, just to buy some time so I can better research the possibilities there and have time to meet the docs. My oncologist here is totally open to doing whatever: I can simply enlarge my team and he'll work with them, or I can have infusions there and scans/evals here; or as he said, I might come to think so highly of the new team that I'll completely transfer.

The canister is a drug they used last time: 5 FU. I told the staff, at least I know what the FU stands for! Take that, you cancer cells! (Gotta keep laughing!)
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2535
Posted 5/5/2022 10:08 AM (GMT -7)
Positive thinking is the only way to do it. Hope the chemo rounds aren’t too terrible and wishing you a speedy process beating this cancer.
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1403
Posted 5/5/2022 10:19 AM (GMT -7)
Wishing you the very best! Loved the FU to cancer cells! What a great and fitting name!
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