Topic: Post Radiation

Well, I figured since I had started to hijack LisaS' post, I figured I start my own.

Mark has not done well post-radiation. The radiation ONC blames it on the chemo and the medical ONC blames it on the radiation. I think it's a little bit of both. They had to work hard to get this round of radiation around the radiation from when he was a kid. Also we found out that when they removed the left lobe of his liver that his stomach slid to more mid-line so when they radiated the tumor bed, they got the stomach. And the 5FU is pretty rough for him so it's just a double whammy. He feels like stuff is sticking in his esophagus even though they tell us (and showed us) that they weren't hitting it. Anything with texture feels like it sticks. He's living on MaltOMeal, soups like chicken noodle and tomato and protein shakes. However he has no appetite so its not much when he eats. Weight is down to 179# this AM.....which is 15# less that his lowest after surgery. Ugh! Looks like a stick man.

He started his Megace tonight after much debate and argument. He was okay with it until the doc told him it was a female hormone. I had to promise him that it wouldn't change anything (and nothing would fall off smile Lol). He did take once I got it tonight.

He is still walking out to get the mail most days unless it is raining too hard and he is pooper scooping some after the puppy, of course that's because he knows I will mow over it if he doesn't.

We have talked about TPN or a J-tube. I am leaning toward TPN since it won't require another procedure. We see the doc again tomorrow for labs and fluids. A lot will depend on his protein levels. If they are down (were low but not worrisome last set of labs) then we will have to consider it.

And to top it off I went back to work on Monday, half-ish days for now. I finally after a year ran out of FMLA. Although my employer is still working with me as best they can. Mostly I need to keep the insurance. And I applied for a new job.....looking at working in a clinic with long term disease management. We'll see.

Thanks all for your support.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

2 (edited by Darla Thu, 24 Apr 2014 19:43:35)

Re: Post Radiation

Wow Kris,  you & Mark are sure dealing with a lot right now.   Hope you can get some help from the doctor tomorrow and can get this all sorted out.   Also hoping that what ever way you decided to go on the job situation it all works out for you.  Unfortunately life does have to go on even while dealing with all of the things involved with being a caretaker.   Making all these decisions and trying to work it all out is not an easy road, but I know you will make it work.  Just remember that you never know how strong you are until being strong is the only choice you have and dealing with CC, it is our only choice, to stay strong.  Just keep taking it one day at a time.

Lots of love & hugs for both of you.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Post Radiation

Holy Cow, Kris, Not sure why but thought Mark was doing better than that, I suppose because he was so good at the wedding. One of Teddy's daughters who is 52 has food not going down as well, She has Parkinson's. They were going to do an Endoscopy and decided on an ultra sound instead of the Esophagus today. If Mark says the food is sticking I believe that and it would be so easy to find out if the esophagus narrowed through all this. Geez, instead of them blaming each other it's like shut up you guys and find out! Michelle says when she tries to eat it just won't go down. I feel so bad for you. As far as the job I always feel what is meant to be will be and it is usually for the best. Wish there was something I could do for you, not the kind of post I like!! We are all right beside you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Post Radiation

I kept hoping he would just get better that's kind of why I never really said anything. I figured he would bounce back like he did when they held all of it for the week before the wedding (part of the reason he looked alright at the wedding) however, he hasn't.

I know I just keep putting one foot in front of the other everyday. Someone asked my how I do it....how I keep dealing with it all. I told them I didn't have a choice. If I didn't do it no one else would and that you just put one foot in front of the other. At one point during all of this my goal for the day was just getting out of bed. I do it because I have no choice, you are right.

I am just bummed that it's ending this way. It broke my heart this morning to find him curled up on the bed after his shower looking about half dead then he told me he wished he hadn't done this last part. He's been so strong through all of this. He's still been my rock even though he is the one who's sick and to see him like that....it was awful. And them I am frustrated because I can't fix it. I have tried all my little nursing tricks and nothing seems to be working. He knows my frustration so he tries not to say anything but I still see it. UGH!

Thanks for the vent.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Post Radiation

Hi Kris,

You vent away - anytime. 

I do hope Mark catches a break and that it eases up even if just a little for both of you.  Good luck with the new job application. X

Clare

In the stars now . . . .

Re: Post Radiation

Kris....I wonder whether an artificial saliva product may help Mark.  We have had some positive comments on Biotene spray, gum, mouthwash.  Not sure it will help, but I think its worth a try. 
I have learned that the liver and stomach are very sensitive to radiation.  The later has a tendency to form ulcers something many others had spoken of.  I don't recall, but had Mark's spacers implanted prior to the radiation procedure?  Hopefully things will improve within the next few weeks and he will regain his energy.
This has been a tough time for you both; you deserve a break.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Post Radiation

Thinking of you.  xoxo

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Post Radiation

Well, crap.  I'm so sorry he's having such a tough time.  I know my oncologist told me it would be a few weeks from now before I would get my taste back.  I feel like I have a thread or something in the back of my throat and I can't get it and honestly, there are some food textures that I just can't eat either.  I instantly feel like I'll throw up.  My husband claims I've reverted to 5th grade, because whenever I'm having trouble eating, I can usually get down about half of a plain hamburger (and I mean nothing on it), peanut butter or a slice of cheese pizza.

I think I know what the J-tube is.  When I had surgery for the abdominal blockage back in October, the surgeon also put in my port and, just as a precaution, put in a feeding tube, in case I had trouble eating after the surgery or during chemo.  I think that was a J-tube.  I used mine once.  It was a disaster - a funny disaster - because the surgeon told me I could just squirt stuff in with the big plastic syringe I used to flush it with water every night.  What he didn't tell me was that you have to do it super slowly and basically let it drip in.  Well, I squirted a whole can of Ensure at one time.  I can't stand the taste of Ensure, so I figured, well, I'll get the calories without the taste this way.  Putting a whole can into the tube in about 5 minutes made for a very uncomfortable afternoon!

I can -- and do -- sypathize with the insurance/work issue too.  Our health insurance is through my work, as my husband is self employed.  And, being self-employed, his income can vary wildly, so my steady salary is what makes the house payment.  So many times in the last 6 months, I've wanted to apply for our disability retirement program, but my health insurance costs would go up (I'd pay the employer portion) at the same time my income would be cut to 60% of what I earn now (for the first year and then 40% after that).  So, I've felt stuck continuing to work, which I muddled through as best I could.  Fortunately, I have a nice boss, who lost a sister-in-law to breast cancer, so she has been very good to work with, but I, too, feel like that won't last forever.  I had to have so many files reassigned (I work for a federal agency, so all my cases are inhouse).  Fortunately, I have a few really nice colleagues who stepped in and helped out.  But again, I can't rely on that forever.
The other thing about them is that I found it very uncomfortable - they inflate a balloon in your abdomen to keep the darn thing in place and every time I bent or twisted, I felt it.  Plus, I'd tuck the tube in a pants pocket and forget it was there, so when I would take my pants down, I'd yank it.  Ouch.  Still, if I couldn't get nutrition any other way, I'd have it put in again.

Anyway, I've rambled enough.  Sending you a virtual hug!

L

Impatient patient.

Re: Post Radiation

Thank you Lisa. You gave me a chuckle which I needed right now. I wish I could put my finger on which it but is suspect there is no one cause. First thing he did this morning was throw up. I may set my alarm for the middle of the night to give him an anti-nausea. We have tried the Biotene, salt water rinses, the radiation therapy mix (Lidocaine, benadryl and Maalox) and I can't get him to do anything routinely especially when I am not home to remind him. I bought some Super Digestive Enzymes at GNC that are supposed to help with digestion after stuff like this but he will only do it if I remind him. I kind of yelled at him the other day telling him he needed to take some responsibility for himself if he wants to get better. Then I felt so guilty about it.
I am only lucky at work because we are really slow right now. If we were super busy then they would be pushing. As long as I can keep my current job title then even if I work less that 30 hours my insurance cost an the same. Sometimes so thankful for my union. Although my boss is pretty cool and working with healthcare helps too.

Thanks, Kris

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Post Radiation

Kris, just wanted to let you guys know you are in my thoughts.  Sorry Mark is having a rough time and I hope he feels better soon. Hugs.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: Post Radiation

Kris, I am so sorry Mark is still feeling bad. At a loss as to what to suggest! Please don't feel guilty when your voice raises a bit when telling him what he needs to do, I did that too but Teddy understood. Now I hope I can give you a laugh as well. IF you did not yell at Mark, his family would have nothing to talk about!!!!!!!!  LOL (I hope)

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Post Radiation

Well, we are home again?! They gave him some fluids....did that before they even got his blood work back since his blood pressure was soooo low and he was getting dizzy standing up.
Our doc is gone this week (Dr Picozzi is in Japan giving a lecture) so we saw one of his partners Dr Rosales. Wonderful man. Of course, never run into anyone who we really didn't like. We had the choice of coming back up tomorrow then Mon, Wed, Fri for fluids or.....I could do it it at home. WooHoo! A doc that really understands that stress of the drive. After a couple of phone calls I had it all set up. The supplies will be delivered to home and I can deal with it here....and still work.
His protein levels are still really good so they aren't super worried. He said it can take two weeks for the stomach to really start working after the radiation. If foods feels like it is getting stuck, especially foods with texture, then to stick with a soft, pureed diet. He told him it was gross but "pre-chewed" was best. I about died laughing because I tell my patients that all the time.
They got him in and out fast today which was nice so he could sleep more at home. Oh well, if he's asleep he's not complaining.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.