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Re: My CRC with liver mets journey

Posted: Thu Mar 28, 2019 12:00 pm
by cartech78
ginabeewell wrote:Surgery went well yesterday, both surgeons are happy.

The pump placement went first and sounds like it went flawlessly, with the blue dye flowing to the liver and nowhere else.

The colon resection turned out to be a little trickier, they ended up having to remove one ovary.

They started me on a very low dosage of pain medication because I have only one kidney, so between that and a nurse who wasn’t getting my signals, it was an excruciating night. They finally got things sorted out this morning and I feel much better and have been able to get up, go to the bathroom, etc. Still don’t feel like eating but Dr Kingham said to take my time with that.

All in all feeling glad to have surgery behind us!

Hi Gina, glad to hear your doing well. After my pump placement
3 weeks ago it seems like appetite takes a little while to return. I definitely noticed a bloated feeling after eating for a couple weeks. Next up will be your pump study! Its a pretty uneventful test that you will lie on a scan table for about an hour or so and they will fill your pump with nuclear dye. Its not to bad getting the pump filled at all so don’t worry about pain. Kingham is a great surgeon and did my pump as well as resection of one liver met. They wanted to resect more but couldn’t on me because they found a bunch of small mets scans didn’t show. It looks like i found someone at University of Chicago to service the pump in the off weeks. Strangely Kemeny told me she didn’t know of anyone to help at Northwestern. The Dr at u of Chicagos name is Dr.Polite if you end up needing to use him. Good luck with your recovery and let me know if you need anymore info.

Re: My CRC with liver mets journey

Posted: Fri Mar 29, 2019 6:10 am
by heiders33
Glad the surgery went well! I also had a slow time getting my appetite back. Make sure to walk as much as you can for a faster recovery. If you have muscle spasms in your abdomen like I did, ask for Ativan or Toradol if your kidney can handle it. It was the only thing that allowed me to get out of bed without pain those first couple days.

Re: My CRC with liver mets journey

Posted: Fri Mar 29, 2019 11:37 am
by ginabeewell
I’m off the pain pump and onto oral painkillers. Still need to pass gas but other than that I’m ready for discharge! I’m eating a little and my stomach is gurgling so it seems to be “waking up.”

There was a pump study cancellation this afternoon so I’m going to do that today instead of Monday.

Too funny about Kemeny not knowing anyone at Northwestern, I wonder if my contact just slipped her mind?! I actually had a first meeting with Dr Blaise Polite; he is supposed to be very good.

Re: My CRC with liver mets journey

Posted: Fri Mar 29, 2019 11:41 am
by AppleTree
All sounds like good updates. Safe travels home. I like to time my pain meds before car trips...just to cover all my bases. Speedy recovery.

Re: My CRC with liver mets journey

Posted: Sat Mar 30, 2019 5:39 pm
by ginabeewell
The pump study went well, the follow told me it was working perfectly.

In other good news we learned to hack these terrible beds. I swear the bed is giving me more pain than the surgery!

Still no bowel movement, so they don’t want to discharge me. But I’m feeling good so I may insist on it tomorrow even if that hasn’t happened yet. I know I would be more active OUT of the hospital than in, walking laps around the halls.

Re: My CRC with liver mets journey

Posted: Sat Mar 30, 2019 6:09 pm
by LPL
ginabeewell wrote:The pump study went well, the follow told me it was working perfectly.

In other good news we learned to hack these terrible beds. I swear the bed is giving me more pain than the surgery!

Still no bowel movement, so they don’t want to discharge me. But I’m feeling good so I may insist on it tomorrow even if that hasn’t happened yet. I know I would be more active OUT of the hospital than in, walking laps around the halls.

Hi Gina, good news about the pump study :-)
I hope your ‘system’ will wake up before you go home.
Sorry to hear about the bed. I have only one experience of hospital beds in the USA. It was 2016 at SFGH (San Francisco General Hospital) and I still remember the wonderful!! bed. I even asked hubby to take a photo of it.
Image

Re: My CRC with liver mets journey

Posted: Sat Mar 30, 2019 6:27 pm
by ginabeewell
LPL wrote:
ginabeewell wrote:The pump study went well, the follow told me it was working perfectly.

In other good news we learned to hack these terrible beds. I swear the bed is giving me more pain than the surgery!

Still no bowel movement, so they don’t want to discharge me. But I’m feeling good so I may insist on it tomorrow even if that hasn’t happened yet. I know I would be more active OUT of the hospital than in, walking laps around the halls.

Hi Gina, good news about the pump study :-)
I hope your ‘system’ will wake up before you go home.
Sorry to hear about the bed. I have only one experience of hospital beds in the USA. It was 2016 at SFGH (San Francisco General Hospital) and I still remember the wonderful!! bed. I even asked hubby to take a photo of it.
Image


That’s the same terrible bed!! No support at all! But we figured out how to put it on “max fill” for 30 minutes ata time, which has helped tremendously.

Re: My CRC with liver mets journey

Posted: Sun Mar 31, 2019 2:55 am
by LPL
Oh wow :shock: I presume they had my bed on max the whole time then. I could feel how the mattress changed now and then.
Good that you figured out how to make it better.

Re: My CRC with liver mets journey

Posted: Mon Apr 01, 2019 8:18 pm
by ginabeewell
I’m now five days out from surgery. They discharged me yesterday at noon, and my mom arrived in New York late last night. I feel so much better. I’m down to 5 mg of Oxy during the day, and sometimes I’m going extra hours between doses without noticing. But I’m taking Tylenol too.

I’m walking a half mile at a time (and napping plenty too). My husband’s sister, a chiropractor, came to give me a massage and an adjustment. OMG that helped tremendously!

Tonight I felt good enough to make a simple pasta sauce for dinner, the one I make once a week at home. I ate a little more than I’ve been eating, still not a normal amount, but I suspect that’s because I’m still very swollen. I’m weirded out by my belly! I can’t even see the pump because my bump is obscuring it.

Hope the weather is a little better tomorrow, and we can walk again. New York is a great city for walking and my mom hasn’t been here since she was a teen so that’s fun! Not much else planned until a CT scan on Thursday and post-op appts next Monday.

Re: My CRC with liver mets journey

Posted: Fri Apr 05, 2019 5:06 pm
by ginabeewell
I had a CT scan yesterday and Sandy called me today to say there was a blood clot on my spleen vein. Back to MSK for syringes full of blood thinner - I gave myself a shot in the bathroom and then we took a bus tour of NY!

I’m now 9 days out. My swelling has been reduced significantly, and I’m walking about two miles a day. I took next week off, but I could probably go back to work if I wanted to. I’m off Oxy during the day and just using Tylenol. My appetite is at about 3/4 strength.

Dinner in Little Italy tonight, I hope. A friend is coming down to meet us and I’m hungry!

Re: My CRC with liver mets journey

Posted: Fri Apr 05, 2019 9:27 pm
by Pyro
ginabeewell wrote:I had a CT scan yesterday and Sandy called me today to say there was a blood clot on my spleen vein. Back to MSK for syringes full of blood thinner - I gave myself a shot in the bathroom and then we took a bus tour of NY!

I’m now 9 days out. My swelling has been reduced significantly, and I’m walking about two miles a day. I took next week off, but I could probably go back to work if I wanted to. I’m off Oxy during the day and just using Tylenol. My appetite is at about 3/4 strength.

Dinner in Little Italy tonight, I hope. A friend is coming down to meet us and I’m hungry!


Congrats! So you weren’t on blood thinners to begin with? My major cancer surgeries all had 30 days of injections afterwards, wonder why that is?

Re: My CRC with liver mets journey

Posted: Sun Apr 07, 2019 2:35 pm
by LPL
Pyro wrote:
ginabeewell wrote:I had a CT scan yesterday and Sandy called me today to say there was a blood clot on my spleen vein. Back to MSK for syringes full of blood thinner - I gave myself a shot in the bathroom and then we took a bus tour of NY!

I’m now 9 days out. My swelling has been reduced significantly, and I’m walking about two miles a day. I took next week off, but I could probably go back to work if I wanted to. I’m off Oxy during the day and just using Tylenol. My appetite is at about 3/4 strength.

Dinner in Little Italy tonight, I hope. A friend is coming down to meet us and I’m hungry!


Congrats! So you weren’t on blood thinners to begin with? My major cancer surgeries all had 30 days of injections afterwards, wonder why that is?

My husband was also put on bloof thinners and after he came home it continued for ? (a while, don’t remember exact now).
But he did not have a pump implanted if that is different?
All the best to you Gina.

Re: My CRC with liver mets journey

Posted: Sun Apr 07, 2019 6:22 pm
by ginabeewell
Interesting, sounds like blood thinners post surgery is pretty common. I had Heparin while I was in the hospital but nothing after that - until they called me about the clot.

I have post op appointments tomorrow and will get the pump filled with saline.

I’ve been doing well, skipped painkillers today and didn’t miss them. I’m glad I stayed in NY because I think all the walking helped. I’m probably walking two miles a day here. But definitely ready to get home tomorrow night!

Re: My CRC with liver mets journey

Posted: Mon Apr 08, 2019 9:54 am
by ginabeewell
Well I must be doing well because they want to start the pump chemo TODAY. We were just expecting saline. Glad I had sushi yesterday!

Sounds like they only found one affected lymph node, near the colon, which was removed during surgery. Pathology on all the other nodes was negative. I was a bit surprised by this, I assumed stage 4 went hand in hand with lymph nodes being more broadly impacted.

One more post op to go (with Dr Paty) and then will get the pump filled.

Re: My CRC with liver mets journey

Posted: Mon Apr 08, 2019 3:29 pm
by LPL
ginabeewell wrote:Well I must be doing well because they want to start the pump chemo TODAY. We were just expecting saline. Glad I had sushi yesterday!

Sounds like they only found one affected lymph node, near the colon, which was removed during surgery. Pathology on all the other nodes was negative. I was a bit surprised by this, I assumed stage 4 went hand in hand with lymph nodes being more broadly impacted.

One more post op to go (with Dr Paty) and then will get the pump filled.

Sounds good this Gina.
I like your positive approach to things!
Best of luck with the pump chemo.