i am feeling a little blue today. it is the holiday season, with everyone asking if we have gotten our shopping done yet. we have yet to shop, money is super tight. our kids are all adults but one (17), so they understand...at least they say they do.

he is starting to get "sunburn" on his face and neck. our bathroom countertop looks like a pharmacy. he had a reaction today from the amifostine shot he gets with radiation-fever and swelling in the shot site, an instant bruise and a rash. his poor arms are all bruised from the shots.
he cried today coming from the MO saying he was just tired of feeling this way. broke my heart. i think it has alot with not being able to "do" christmas. weve never been not able to have a big christmas.

although we talked about just skipping christmas this year, i have decided today to do one small gift per child (we have 6 kids, so that adds up fast). i think that no gifts would just put him into a depression. he already feels like a failure for not being able to help us financially. i tell him it isnt his fault, that he didnt have control over this, so to stop blaming himself.

this may sound strange but it is breaking my heart, that it is breaking his heart of the situation we are in. i know the rads tires him out but he is just staying in bed.

thanks for letting me vent...
teresa

Teresa my heart goes out to you as you and your family struggle to get through the holiday season without "doing" Christmas in your usual tradition. I know how difficult that is, I was there 2 years ago. Tell your hubby his gift to his family will be his presence and making it through treatment to recovery. Vent as you need to everyone here understands and supports you.

Teresa,

I understand. I don't want to do much but I have a twelve year old at home and he needs a christmas. I did the tree and just got done doing a few lights outside in the cold.

It's still going to be a bare bones christmas. My inlaws want to see me in Wisconsin and my family has invited us to the other side of Michigan. I dread the travel but may just go along. My wife wants to spend what time she can with her father who is not doing all that well so I understand. It's all just so tiring.

I realy just want to stay at home and take it easy this year.

Kelly

i went out last nite dropped off his prescriptions and bought a few gifts while i waited for his medicine.
i came home with such anxiety, just knowing he was going to be upset.
he was actually happy about it! he was instantly in better spirits. so i know this was weighing heavy on him.

another thing...yesterday when he went to weigh in, he left his coat on this time and had weighed the same as last week. the nurse was glad that his weight was holding. when he handed me his coat to get his shot, i noticed 2 full water bottles, one in each of his pockets. i did not make a big stink about it in front of the medical team, but made him get back on the scale when the nurse was out of the room. he had lost 3 lbs in one week.
i told him next week, no coat. should i be concerned about the fact that he decieved the nurse? it wasnt a mistake on his part either, since he gave me a little smirk when i found the water.

thank u all,
teresa

I don't think what he did on the scale is unusual. My husband weighted down his pockets and wore heavier and heavier clothing as he progressed through treatment. I tracked his morning weight at home so I always had an accurate gauge of where he was at.

When I told the nurse about it while he was in treatment, she didn't seem at all surprised.

Glad things are looking up a little for Xmas.

Teresa,

A few months ago we the board was full of stories from the guys here about wearing coats, heavy boots and whatever. One guy even put lead wieghts in his pockets. Apparently its a guy thing.

Teresa, whats most important is everyone being together for Christmas. You are blessed to have a large family.

As far as the scale thing. I would wear progressively heavier clothes and shoes as my treatments went on. Every week I lost weight. It got to the point where my nurse would make me do a feeding everyday when I came for rad. She even started weighing me daily. I didnt realize til it was over how much she was helping me keep my nutrition up.

Best of luck with the continuing treatments.

Teresa, I would not worry about 3 pounds. I have been losing anywhere from 5 to 10 pounds a week. I so understand the Christmas blues. I have them and it is really hard with small children. They do lift my spirits some. Anyway, I am glad you were able to get a few little something for Christmas and it helped your husband. Just know you are not alone and neither is he.

Teresa

Oh yeah, I am proud and unrepentant about tricking my medical team out of their paranoid focus on my weight before Cancer TX.
I wore heavy boots, blackberry and even lead weights because I knew I had been perfectly healthy at 125 pounds when I ran marathons. Of course I had ballooned up as I got older but just like my Thryoid levels, what is important is that I get back to what I was when I was healthy, not diseased. So relax, this show that your husband wants to live and has a fighting spirit. That translates into him being with you longer.
charm

when i read ur comments on how yall weighed urselves down, it made me laugh. thank u for that, i needed a little chuckle! i wasnt too worried about the 3 lbs, but i dont want him to decieve the docs like that. he had lost 30 lbs during chemo, and in trying to "fatten him up for radiation, i only mananaged to fatten myself up :(, he gained 10lbs back, i retained the other 20.

still trying to put weight on him and now i have to go on a diet...

we are looking forward to having our family home for christmas! we only have one at home, the others are on their own. with the exception of one in the navy, they are all within 3 hours of us. we do feel blessed to have them!!

thanks again for the support!
teresa

Good Lord...I still take coat, shoes, sweater and even my glasses OFF when I get weighed! I was "big boned" before cancer - and remain so today! I must say I love the people at CancerCare Manitoba. When I get on the scale there - they are so happy that I have maintained my weight and they give me a high 5! WHERE WERE THESE PEOPLE ALL MY LIFE???

Hugs

Donna

hi Teresa,
The weights are a man thing. Martin used to wear several heavy jumpers for his weighings. He lost 2 stones and weighed the same as me before he was convinced he needed a feeding tube.
As for Christmas, the fact you are together is what's inportant. martin managed to get a few things last year, and i got him some little things to open and something for his daughter. He didn't want christmas at all, but on Christmas eve, I couldn't do it, I took out the Christmas tree and decorated it. And found a spot in our then building site lounge. Martin liked it and perked up for the day. This was last year and he is now looking forward to Christmas once again. Hang on in there. You are together.
Cecilia

I didn't use any weights, I was too weak to try and transport them!!

well with the "weights" off, andy was down 9 lbs in a week. the RO freaked out on him and told him to use his PEG (something he was avoiding) or she would put him in the hospital.

i was still working and getting him to all his treatments but decided to take a leave so i can take care of him full time. i would make him big pots of soft food (spaghetti, chicken n dumplins, etc) and ask him if he was eating, he told me yes but admitted he was too weak to get it or his throat was too sore to eat.

i am mad at myself for not noticing this. i only have 30 days paid leave so was trying to save it for when he got really bad and needed me full-time. he just finished his 4th week and now im afraid my time will run out before he gets "better".

i was trying to do some christmas shopping yesterday while andy was getting his chemo and had my first ever panic attack, i had to go to the bathroom and calm down and just cried and cried.

andy has 4 days off from rads, so i am hoping he will feel a little better with the break.
thanks for letting me vent...MERRY CHRISTMAS TO ALL!!
teresa

Teresa,

Don't want to be the bearer of bad tidings but for the vast majority of us the period between week 4 of Tx and week 3 post Tx is the worse, especially the weeks post Tx so do what you can to save your leave just in case.

david,
i have read some of ur earlier post that stated this, so i already suspected this.
the good news is that i can take off longer. my supervisor and fellow managers are VERY understanding (they have been in simular situations). the bad news is that it will be unpaid. i only have 30 paid days. i guess i am fortunate for that. they are willing to work with me--whatever it takes.

it is the unknown that drives me crazy. not being able to plan. too many what if's. ugh!
teresa

Yes because we all react somewhat differently the unknown can be tricky but thsi site will prepare you for just about the worst case so in that respect it does level out the unknowns. That said I would pretty much count on his most difficult time during that 7 week period above, especially the weeks post Tx.

I sailed through the first 3 weeks but after 15 rads and my second chemo things went south quickly and for the next 7 weeks I didn't fear my cancer as much as I did my Tx.

currently he is 15 rads/4 chemos down. he missed 2 rads due to PEG tube surgery and 1 when he got a liver ultrasound done and again 1 this week due to Christmas. 25/5 to go.

it is scary to know that he hasnt even really got bad yet. andy is my rock and i dont have my rock to lean on...

Teresa

I know you are struggling right now. Im so sorry that your rock is ill. Please know we all care very much. Unfortunately, this is the point where he wont be feeling so good. It usually gets worse as time goes on. The bright side is he is about 1/2 way thru. He will be feeling great by spring time. If you need to lean on someone, please remember we are here for you as well as for Andy.

thanks christine! i dont know how i could cope without this forum. i am on here everyday for support, and the support is here for me daily!!!! cyber hugs and kisses to all XXXOOO!

Dark Vader here...Although I hope so I don't think he will be feeling great by spring. He will most likely have a very long, frustrating and confusing recovery lasting up to 2 years with the first year the most disappointing or should I say challenging. He will most likely still be very weak by spring time and will still be facing taste and saliva issues that would make most people hate life but since he will be improving from a near death state post Tx, it will be viewed as a vast improvement.

I have never seen one on this site that starts out having a bad reaction earlier than most do better than most as the Tx progresses. This also does not mean that he will continue to fare worse than most either. Heck this site nor any professional out there has never done any study to my knowledge what is normal during Tx anyway but I'm just basing my comments on what I've seen and of course my own reactions.

My personal view in dealing with OC Tx patients and their CG'ers is to prepare them for what is usually the norm which isn't pretty at all so as not to let them think they are abnormally worse than most. If my advance warnings never play out then so much the better.

david,
you are definately NOT darth vader...but that did give me a laugh. i will take a laugh whenever and where ever i can get it.
one thing i appreciate about this site is that i hear it like it is. i may not like it, but i need to hear it so i can prepare for it.
masking the truth is useless info!! the down and dirty truth is much more helpful. but it still doesnt keep me from freaking out for a few minutes lol.

at this point, we are just hoping for him being strong enough to travel to Vegas to take our daughter for her 21st birthday on Sept 30...Spring did sound sooooo good though. but by Spring, (hopefully) all treatments will be over and recovery begins!