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Re: Need Support - Told today I'm on Palliative Care

Posted: Mon Jul 29, 2019 2:28 pm
by mariane
Good luck! I signed palliative care papers 4 years ago. My twins were 6 and I was 40. I am still here, doing good. I wish you best of luck!

Re: Need Support - Told today I'm on Palliative Care

Posted: Wed Aug 21, 2019 5:57 am
by tbt4snow
Hi Nynessie,
You under went a huge surgery, I Hope all is well for you. Let us know how you are doing when you are up to it.
Take care.

Re: Need Support - Told today I'm on Palliative Care

Posted: Sat Sep 07, 2019 7:34 am
by nynessie
One month ago I had my CRS-HIPEC surgery. Cannot believe it's been a month already.

So far nothing to report, except that my husband tells me that when the surgeon came out to see him afterward, he said things went well and he was positive he'd gotten 99% of it. It was a long surgery - I went in at 8am, and my husband said the doctor came out around 8-8:30pm. Paul was able to see me once I got into the ICU at 10:30pm. He deserves a medal. He said the hardest part was the lack of progress reports all day.

I am looking forward to seeing Dr. Cusack on Monday, and will also see my oncologist Dr Jeff Clark. I'm not sure about everything that was done - though know it included sigmoid, liver, small intestine, diaphragm resections with a complete hysterectomy. I've an incision a little longer than 13 inches with about 48 staples.

I am doing well, at least with the PT and napping parts. :)

Thanks for everyone's support, and I will update next week.

Re: Need Support - Told today I'm on Palliative Care

Posted: Mon Sep 09, 2019 4:44 pm
by juliej
nynessie wrote:One month ago I had my CRS-HIPEC surgery. Cannot believe it's been a month already.

So far nothing to report, except that my husband tells me that when the surgeon came out to see him afterward, he said things went well and he was positive he'd gotten 99% of it. It was a long surgery - I went in at 8am, and my husband said the doctor came out around 8-8:30pm. Paul was able to see me once I got into the ICU at 10:30pm. He deserves a medal. He said the hardest part was the lack of progress reports all day.

I am looking forward to seeing Dr. Cusack on Monday, and will also see my oncologist Dr Jeff Clark. I'm not sure about everything that was done - though know it included sigmoid, liver, small intestine, diaphragm resections with a complete hysterectomy. I've an incision a little longer than 13 inches with about 48 staples.

I am doing well, at least with the PT and napping parts. :)

Thanks for everyone's support, and I will update next week.

Thinking about you today and hoping you get a good report from your surgeon and oncologist. You might ask for a copy of the pathology report so you can see what all was removed, extent of clear margins, etc.

I had 54 staples so I know how you feel! It looked like I had a giant zipper going from my breastbone to my pubic bone! :D

Eat lots of protein to speed up the healing process. You are right about your husband deserving a medal. I think it's hardest on the ones in the waiting room. We sleep through the whole thing! :D

Juliej

Re: Need Support - Told today I'm on Palliative Care

Posted: Wed Oct 02, 2019 4:35 pm
by nynessie
Reports are coming in from my surgery at MGH...

Pathology says all the margins are clean. YAY!

Molecular Diagnostics:
NO amplification of the HER2 gene.
Immunoreactive for MLH1, MSH2, MSH6 and PMS2 - consistent with a microsatellite stable tumor. [MSS]
POSITIVE for variant(s) in SMAD4, APC and KRAS. [mutated not wild]

It's the last one we were interested in, given the two previous reports (from a different hospital) showed both mutated and wild, so we couldn't decide on a treatment. This means I'm not a candidate for the EGFR therapy. I see the oncologist next week and I'm sure we'll come up with a chemo treatment. Not thrilled I am still going to have to do this every 14 days, but it is what it is.

I'm doing fine at the moment, trying to gain weight, and beginning to get braver with my food choices. My body seems to be following a path of its own, with my emotions all over the place, and I'm hoping it's just a little more time before everything settles down. Physical therapy is fantastic, and I'm very glad I am doing this. I go twice a week, working on my posture, endurance, stability, and strength. A lot of walking too. Surgeon has not signed off yet on any exercise involving my abdomen. Staples are out, and of the two dozen or so steri-strips, only five stubbornly remain.

I'm hoping I can get back into my normal clothes soon as it's getting cold here in the northeast. I am rather tired of my two pairs of baggy sweatpants. Also find it funny how much I want to wear a bra again. Darn incision went a little higher than he said, so the bad is just a bit too tight. Anyway, I've set Friday as my day to try on some fall clothes. Wish me luck!

Re: Need Support - Told today I'm on Palliative Care

Posted: Wed Oct 02, 2019 7:23 pm
by juliej
nynessie wrote:Pathology says all the margins are clean. YAY!

YES!!! That's the best news ever! :D :D :D

nynessie wrote:I'm doing fine at the moment, trying to gain weight, and beginning to get braver with my food choices. My body seems to be following a path of its own, with my emotions all over the place, and I'm hoping it's just a little more time before everything settles down. Physical therapy is fantastic, and I'm very glad I am doing this. I go twice a week, working on my posture, endurance, stability, and strength. A lot of walking too. Surgeon has not signed off yet on any exercise involving my abdomen. Staples are out, and of the two dozen or so steri-strips, only five stubbornly remain.

I'm hoping I can get back into my normal clothes soon as it's getting cold here in the northeast. I am rather tired of my two pairs of baggy sweatpants. Also find it funny how much I want to wear a bra again. Darn incision went a little higher than he said, so the bad is just a bit too tight. Anyway, I've set Friday as my day to try on some fall clothes. Wish me luck!

I had to go "commando" in the bra area too. The girls weren't thrilled with the idea, but the incision was just too sensitive to have anything touching it. When you get those last steri-strips removed, you can start wearing more normal pants. Warning: I was horrified when I went to buy new pants right after my surgery and saw my bruised and swollen abdomen in a dressing room mirror. :shock: Just realize it's part of the healing process and try to ignore it. Pick out something in a color you love that fits you and makes you feel good about yourself. They strongly discourage any ab exercises for at least 3 months though. But it's fantastic you're doing physical therapy! And walking can't be beat for strengthening your core.

I had a hard time regaining weight too. Keep trying different foods and see what tastes good. And don't forget to make sure you're eating lots of protein to help with the healing process. You're doing fantastic! Keep up the excellent recovery!

Juliej

Re: Need Support - Told today I'm on Palliative Care

Posted: Wed Dec 18, 2019 11:02 am
by nynessie
So... GOOD NEWS! I remain chemo-free for now. :D

I met with both surgeon and oncologist this week for my 4-month post-op appointment.

The scan report shows there are still cancer cells present, but they are not doing anything. Just sitting there. :D

No limitations on movement, exercise, or what I can lift other than to avoid anything that hurt.

Last out-patient PT is end of the month, and I'll be on my own in the gym twice a week starting 2020.

I return to see my Boston Oncologist at the end of March. In the meantime we watch markers.

Re: Need Support - Told today I'm on Palliative Care

Posted: Sun Dec 22, 2019 12:10 pm
by teresajj1
I'm so happy for you! I remember how worried you were about the surgery and look at you now! :D

I'm hoping for a repeat cytoreductive surgery in the Spring. They are making me do 6 rounds of chemo first this time :x , but it should eliminate chemo post op.

Re: Need Support - Told today I'm on Palliative Care

Posted: Sun Dec 22, 2019 3:33 pm
by radnyc
Great news!! Happy for you.

Re: Need Support - Told today I'm on Palliative Care

Posted: Sun Jan 05, 2020 8:46 am
by Lolly
The power of sharing on this forum is absolutely astonishing.

From "no surgical option, that I would likely not survive surgery, and that I was on Palliative Care" to your surgery and outcome here is amazing.

Re: Need Support - Told today I'm on Palliative Care

Posted: Tue Jan 07, 2020 11:22 pm
by Vana3
So so happy for you!!!!

Re: Need Support - Told today I'm on Palliative Care

Posted: Thu Jan 09, 2020 12:18 pm
by nynessie
2020! January no medical tests or appointments scheduled. February only has a port flush scheduled. March is local ONC, labs, scan, and the Boston ONC.

12/02/2019 labs showed CEA 0.6, CA19-9 12, CA125 50. Cause for concern, so the CEA125 was redone 12/19/2019 and came back at 36. :)

Last PT was end of December, and I went to the local gym for the first time to start my on-my-own workouts. Even got my husband to agree to let me drive once the roads cleared of the last snow. My 2-lb and 3-lb hand weights arrived and I was all set to begin my total on-my-own PT.

I got to drive for the first time since end of July on Tuesday. Yay! Except...
I followed the transport carrying my husband to the local hospital. He'd fallen on our back steps on his way to the gym. Nothing broken. He's wearing an immobilizer and using crutches. He has an appointment with the orthopedist Friday.

My revised PT workouts:
Lifting his leg several times a day. Whatever he did to it resulted in his inability to lift it at all. I'm sure his leg weighs more than my little weights.
Steps on my watch are totally at least 1 mile per day. Stairs are at least 5 flights. (14 steps up to our 2nd floor.)
Drove daughter to school (she's assisting in a classroom today) and I was amazed at the muscles it took to scrape snow and ice off the car. Ouch.

Other than not being able to return to work at the moment I am doing fine in my new role as caregiver. We'll know more Friday as to the extent of his injury and what the near future looks like. For now I keep him from doing crazy things, make lots of tea, and have time to sort through my mom's boxes which has been sitting in my office area almost 2 years. All is good.

Wishing everyone a healthy new year!
Agnes