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Ct results today were good

Ruthmomto4's picture
Ruthmomto4
Posts: 663
Joined: May 2013

 tumor shrunk again from 2.8 to 1.8 (started at 3.8) there is a long area where he had his original  liver resection that is a gray area so to speak. It‘s Not a tumor but may have cancer in it. It’s been there for 4 years and has only gotten smaller in its own. It shrunk a bit too. They found a “cluster of tiny nodules and branching opacities“ in the lung but they are certain it’s inflammation and not anything else. I doubt them because I can’t help myself. He got hooked to his 10th treatment today but made them take the oxaliplatin out. She told him he won’t see anymore shrinking and it will just keep it from growing. 

He still has not had his resection surgery like she promised in the beginning after 4 treatments. He keeps asking when and she says she will talk to the dr, but she never does. We are both very frustrated and wondering if he is ever going to get his surgery. I honestly am just getting very down and I feel like she lied to us. I can’t go to the appointments because it’s when I take our severely autistic son to school and no one can take him. It’s been one thing after another here, sick pets, my dog ate a towel and has been ill since Christmas Day, two of my children have polycystic kidney disease and based on some symptoms my autistic son is having it looks like he has it too. I have been taking him for appointments alone because I don’t want my husband exposed to the flu but taking him alone is not easy. I can’t sleep, and I do nothing but worry and I cry a lot. 

Sorry to vent so much I know I am not the one sick and I need to just stop and be grateful but I just want our stupid boring life back and one day without a sick person or pet might give me a chance to catch my breath a bit. 

 

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

Awww so sorry you are dealing with good/bad news.  As far as the shrinking that is awesome, but watching the other areas is a good thing and usually this happens with all patients.  There are a lot of things in one's body that you'd never know you had unless you had a scan.  It's got to be difficult with dealing with your son as well, I'm sorry it's not more easy for you.  As far as the surgery - get a differnt doctor and get a second opinion.  It's time you get someone else to go over hubby's stuff.  Nothing wrong with that.  Hope that you do that and wishing you well.  You aren't venting you are being a loving, kind wife and mother.

Kim

abita's picture
abita
Posts: 830
Joined: Dec 2017

Who is "she"? I am recovering from my liver resection at the moment. My surgeon said it has to be after the 4th one because chemo is tough on the liver, so you want to do it before too much chemo. My last infusion was Jan 2nd. They gave it time for the drugs to clear out, then I had my surgery, and I have to wait 5 weeks for recovery time before starting the rest of my chemo. I know I have to do the rest, but i definitely have been not wanting to do it. I think you should directly call the surgeon yourself and find out. Which infusion is he on? it is super frsutrating not to know, so just cut through the middleman and get the scoop.

abita's picture
abita
Posts: 830
Joined: Dec 2017

Oh, and you aren't the one sick, BUT, I have found that this is as hard, and in some cases harder, for those who love me. Your feelings are important and exactly as expected.

Trubrit's picture
Trubrit
Posts: 5221
Joined: Jan 2013

You are just as important as any Cancer patient, and we are here for you 100%.  You vent, and we will listen, and understand. 

I think you both need to pin the Doctor down about this surgery. It is causing you - and I'm sure you're husband - too much stress. They must not mess you about like this. It is totally unacceptable. 

And it really does seem like everything is hitting you at the same time. You have so much on your plate, and it really is important that you are able to de-stress somehow. You will end up sick, if you don't back off and take some 'me time'. 

I can't do much to help, from such a distance. But I will think of you often, and send up prayers to the universe and whomever is listenting. 

Tru

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

I'm glad to hear that the tumours are responding. But I'm sad to hear that you're struggling with everything that's been piled on your plate. Somehow you need to have some time to destress and relax. Definitely pin the doctor down to when the surgery is going to happen. Being left hanging is horrible and stressful. Sometimes it seems like life just piles up too much on us all at once. Hopefully everything will get sorted out soon and you can get on top of it all.

Hugs,

Jan 

Ruthmomto4's picture
Ruthmomto4
Posts: 663
Joined: May 2013

abita I am happy see you here I hope you are feeling well. She is his oncologist I should have said that. He had to have extra treatments because where his tumor is in the liver it was way too big to remove. His liver function is good right now, it was way worse before because the tumor was blocking his bile duct and he spent most of summer very jaundice.

He called today and asked them to start getting the surgery set up, he asked if it was possible to even just do an ablation but that area they are unsure of is too big so I think they are just to want to go in. If I don’t hear about surgery at the next visit from him I might be calling MSK and setting up an appointment. He is currently in chemo treatment 10.

I try and distress but I end up just eating and that has to stop as well. My son has an ultrasound Monday luckily my friend used to run the office and called them and really tutored them on my son so I think once I do a pretend ultrasound on him (i was going to use hair gel and a small  wooden roller/massager to describe it to him) I am hoping he will do well. They offered a social story from school but I think I can do it. 

I caught my dog trying to get another towel today I may tape her mouth shut soon (not really I would never). My cat has mouth sores so I have this regimen of meds he takes and he hates to be held so that’s fun lol I am finally getting out a bit tomorrow to get my hair cut and colored so that will be relaxing. 

Thamk you again everyone your kindness and support it helps it really does!!

 

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

I am amazed by all that you do, and without much/any outside support. God sure blessed you with the gift of service to others. I am glad to hear you are treating yourself to a relaxing hair appointment. Little things like that are such a wonderful way to get away from the hard stuff of life. Sounds like your husband is doing pretty well too! 

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