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Joan M - Wishing you well

Trubrit's picture
Trubrit
Posts: 4857
Joined: Jan 2013

Hoping that you are recovering well from your surgery. We have all been thinking of you. 

Tru

PamRav's picture
PamRav
Posts: 251
Joined: Jan 2017

wishing you a quick recovery.  Let us know how you’re progressing.

pam

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

We hope you are recovering quickly and smoothly!

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

Wishing you the best in your recovery.  When you are able, please let us know how you are doing.

Kim

Canadian Sandy's picture
Canadian Sandy
Posts: 512
Joined: Jul 2016

As the others I’m also thinking of you. Hope you are recovering well.

Joan M's picture
Joan M
Posts: 380
Joined: Oct 2016

I had robotic surgery to remove the colon tumor at Mayo in Rochester Friday, April 20th.  The doctor took about 12 inches of colon and lymph nodes. I was in the Methodist Hospital in Rochester for 4 days and then a 6 hour drive home. 

I went to MD Anderson in Houston April 12 and 13th and will start on an immunotherapy trial there 4 weeks after the surgery so in a few more weeks.  I flew to Texas for that appointment and then my mother decided to come back to ND and help me so we drove from Texas straight to Rochester.  Very lucky to have her help me since I am not supposed to lift, pull or push anything over 10 lbs for a total of 6 weeks to avoid possible hernias.    It's only been 10 days, so it will be hard to get through another 30 days of this.   I was pretty sore for about a week, and starting to feel better.

The last CT scan showed some fluid in my liver, and they wanted to put in an external  drainage tube but didn't because I hadn't been on antibiotics for a week prior to the proposed tube placement.  Instead they aspirated the fluid and tested it for infection.  Initially there were no signs of infection so the surgeon went ahead with my surgery.  Infection, and tube would have delayed my surgery for a month and also delayed the immunotherapy trial.   However, I recieved a call saying that after the 5th day there were signs of  moderate or mild infection in the fluid.  When I got the written report it showed at 8:34 am there was no infection, and then they "corrected" it at 11:30am saying there was infection.  I don't know what to believe since there's obviously an error there in the reporting.  I've been on antibiotics now for a week.  I'm supposed to see an Infectious Disease specialist at Mayo on Friday, would like to postpone it awhile and stay home.  Probably not a good idea to ignore any possible infections at this point.     

I'll let you know what they say.  

God Bless and thank you for the prayers!

 

Joan

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

hopefully the fluid isn’t a big problem and you can stay home for a bit, maybe you could call them and see if they can tell you over the phone? Hopefully you continue to heal well!!  

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Joan, So happy you are well enough to post an update. I cannot believe how bravecyou are to do all that traveling for various treatments. That is wonderful. Hoping they're able to figure out this infection so you can be on your way to the next step. We see so much success with immunitherapy. May God give you strength and great healing over the next 30 days!

Trubrit's picture
Trubrit
Posts: 4857
Joined: Jan 2013

It is a long journey, and I hope you continue to behave and no lifting, pushing, pulling but lots of walking, walking, walking. 

I know what its like travelling to appointments, and it is no fun. 

Be good to yourself and we're all here for you. 

Tru

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

6 hour drive home? Ugh, you're a lot tougher than I am! Yes, please be careful with the infections. I had sepsis in September and it took me about 4 months to feel half human again. The scary thing is that sepsis happens really quickly, there's no warning. It gets really bad in the span of a few hours. Now I'm paranoid about it and will probably wear out the battery on our thermometer because I check several times a day.

So happy to hear that you're doing pretty well. Keep up the good work!

Jan

Joan M's picture
Joan M
Posts: 380
Joined: Oct 2016

The last two weeks have been difficult with pain from the surgery and being exhausted.  I had to change my appointment with the Infectious Disease Specialist at Mayo because I was too tired to travel and still so sore from the surgery.   Unfortunately, I learned late Thursday afternoon that the fluid from my liver showed signs of infection after 7 days of growth, so they will probably want to put in the external drain.  I really I didn't want to be subjected to that with all the pain I was going through.  Also didnt want to have the drain in this week because my daughter is graduating from college and I will have alot of company arriving this week and am having a party for her next week weekend. I was on Levaquin for 2 weeks, and haven't had any signs of infection, no fever, feeling fine except the pain which has finally subsided to a tolerable degree.

I am monitoring my temp and watching for signs of infection and any abdominal pain.  My oncologist referred me to a liver surgeon at Sanford, another medical facility located in Fargo, which would save me from driving to Mayo.  I have confidence in the doctors at Mayo and am not sure if I should switch for covenience of location. Definitley have to resolve this liver issue so I can get into the clinical trial at MD Anderson.

I feel very fortunate to have access to such highly esteemed medical facilities.  The traveling hasn't been difficult until this week due to the pain from surgery.  It may get to be difficult if I have bad side effects from the immunotherapy.  That is a consideration but I can't just settle for lesser care when I have a chance at going into remission and possibly being cured.  The doctors here prescribe these immunotherapies for other cancer types so are able to help with side effects, they just can't prescribe the immunotherapy drugs to me until the FDA approves it for use in my particular cancer.  I've been told it takes a couple years from initiation of the trials to the FDA approval.  Considering the problems I had with one treatment of Folfiri, I don't want to wait that long. 

Thank you all for your concern and advice! I'll update you on these issues as they develop. 

Joan 

Trubrit's picture
Trubrit
Posts: 4857
Joined: Jan 2013

and let everyone else do the planning for the graudation and party.  You need all the rest you can get, to heal.

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

Thanks for your update.  Sounds like you've been through a lot but glad that you are feeling better.  It would be nice if you didn't have to have another procedure to battle that infection so hoping that gets better.  Congratulations to daughter also - you got better things to do - so enjoy the family and friends. Hope you feel better soon.

Kim

Joan M's picture
Joan M
Posts: 380
Joined: Oct 2016

I've also had my mother staying with me, so have been able to rest a bit too.  I am tired more than usual, not sure if it's from the surgery or cancer.  I'm thinking both.

I put the liver appointment off until after the graduation.  I just couldn't deal with anything more at this time.  That will put the chemo off by another week, possibly longer if they put the tube in my side.  

Just need to get the house in order for company.  I will have help with that too or it just won't get done.  Lol

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I've read that the anesthetic for surgery can stay in your body for 30 days and cause fatigue. Maybe that's part of the problem. It's great that you have some help. I hope you're feeling much better as soon as possible. Take care!

Jan

Joan M's picture
Joan M
Posts: 380
Joined: Oct 2016

 Thanks for the info!  I'm still tired today. It's hard to get things done when you feel like taking a nap all day long.  I've stayed up without naps only because I can't seem to fall asleep for a nap.. and I've tried almost everyday.  Started drinking coffee again to help me stay awake even though it upsets my stomach - taking antacids for that.  

Overall I feel better each day - and less tired.  Hopefully I will get some energy back soon so I can get things done.  

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