57 replies to this topic

[tazdad08]

Thanks everyone... keep this going. I am enjoying the posts.... silly and serious ones. We cant change what we have, we just have to figure out how to live with it!

[Antilogical]

The awesome thing is that mostly - with a few exceptions - we CAN live with it!  Or, at least, in spite of it.

[pammartin]

I like, 'In spite of it.' 

[Marnie]

Well said, Mr. Tee.

[chrissy778]

Agreed. Thank you Mr T

[Billie Murawski]

Very well said, Pat.  

 

Billie, if I don't start using the restroom before I read your posts I am going to have to buy protective under garments.  My bladder isn't as good as it used to be.  I am too old and too old to admit to peeing my pants.

Pam, I don't think that I was ever completely housebroken, Any woman who doesn't pee her pants while laughing is not norml

auto correct doesn't understand I wanted to spell norml that way.

[dede5]

 

auto correct doesn't understand I wanted to spell norml that way.

Billie, I think you're onto something: confuse auto correct and beat it at it's own game. Ha! 

[Billie Murawski]

dede thats a good idea, I'm such a computer idiot I can't believe it works in the first place. Everytime I try something different on my computer I screw it up and I end up on the phone for hours with the geek squad. I think I know them all by now. My desktop is screwed up right now so I have to call them and drive another poor geek crazy.

Did you have a nice holiday, ours was nice and quiet. I am the worst cook in the world, I hate to cook but I do it, for Easter dinner I usually make ham and potato salad, this year I thought ham and scalloped potatoes sounded good so I got on the internet and got a recipe I figured how can I screw up scalloped potatoes right!! Dinners on the table I take the lid of the casserole dish that I made the potatoes in lo and behold I forgot to put milk in the potatoes.  The ham was good .

[dede5]

Billie, that's one of the frustrating things about cooking. By the time you realize something has gone wrong, it's too late   

 

I seldom have a quiet holiday. They consist of Mom, sisters and their families, daughters and their families and occasionally someone who doesn't have family to celebrate with. It used to be bigger than that, with cousins, aunts, uncles, etc., but had to cut back somewhere. Fortunately, Jake does most of the work and I supervise. Plus, everyone brings a few dishes for pot luck. Our Easter meal is ham, potato salad, baked beans, and various sides and desserts. I did have a quiet Easter a few years ago. Came down with shingles and nobody wanted to come near me. Next time I want to keep it small, I'll know how to clear the room 

[pammartin]

I am a baker and a cook and enjoy both but for some reason I cannot leave a recipe alone.  I mess with box mixes.  I always think I can improve or put my own signature on the dish.  I have had some massive failures.  My one consistent error I cannot seem to remember if I did, how many, or to even get them out is eggs.  It got so bad I several years ago I started getting a bowl out just for egg shells.  If there are no egg shells in the bowl I didn't use them.  This works if I remember to get the eggs out of the fridge.  No eggs, no bowl to put shells in, serious failure of whatever I am making. 

[dede5]

It got so bad I several years ago I started getting a bowl out just for egg shells.  If there are no egg shells in the bowl I didn't use them.  

 

Pam, I think this is a great Idea. I usually lay out the eggs I need and that way I know if I put the right amount, but having the shells in plain sight is better proof after the fact, that you actually remembered them at all. I love to experiment with cooking, too. Sometimes it works out, sometimes it doesn't 

[pammartin]

I had a minor experiment today.  I thought I had pulled it off till I realized my top crust was only a thin crunchy coating.  It was supposed to be eaten on a plate.  I quickly grabbed oversized cereal bowls and spooned dinner into them.  My husband looked at me puzzled, not sure what he was eating.  I am glad he didn't ask me, I haven't yet thought up a name.

[Billie Murawski]

Pam, I do that all the time I call it my "what the hell is this " special.

[pammartin]

Billie, I have stolen that from you also.  From now on if ask I am going to name my dish 'What the hell is that.' 

 

 

I sent you email.  Please use restroom before you read.

[carrie]

I have always been the doer. Even through the last 8 years of CML on Gleevec, I am still the doer. I get up at 5:00 a.m. get to school around 7:30. I teach all day. I come home. I am the bill payer, I organize everything, I keep all of the ducks in a row. No one in my family ever has any sympathy for me because I work so hard and keep on doing. That is a good thing except once in a while I would love them to acknowledge, oh my gosh, you do so much and push through your cancer. A couple of times I have stated, " I am so tired", or I am feeling this way and it is because of the cancer. I will then get, " don't pull the C card". My husband has not worked for 6 months now. I get mad that I am the one sick who is working at everything while he stays home. He is looking for a job but not hard enough in my opinion. I have to push that anger aside as it is not good to have. My numbers are really going up and if I test high again, I will have to switch to another drug. We will see what happens when I visit the doctor on May 14th. Sometimes I wish I wasn't the DOER.

[tazdad08]

Carrie,,, I feel like our situation is similar. My wife hasnt worked for 6 years. It was our choice for her to stay home at that time because of some social anxiety, but I didnt have cancer then either. I know she has her own battles, but I am tired. I dont get home till 630pm and that just doesnt leave any "me time". And i know that everyone handles things differently, but be careful pushing your own anger to the side and bottling it up. It will explode one day. I think bottling it up is part of my problem.

[carrie]

Tazdad08,

Today was the first time I ever shared those feelings. I should find a way to get that out. I know it is not good to hold it in. I am glad that I have this forum. It helped to share. Thanks for starting the post. Punching bag, smashing plates with a golf club, take a gun to a shooting range,...

[Gail's]

I think the more you've been a doer, the harder it is to work with the fatigue. Do you think you'd get more family support if you could open up to them a little more about your feelings? If you act like the cancer is no big deal, they seem to be following suit. Sounds a little scary to be watching those numbers rise, I'm sure!

[klf2013]

The strong one, the rock, call it what you will, but it is an outside perception of us.  I have found that the longer I present the strong front, the more resentful I get towards the people in my life that act as if nothing is wrong. I have a "leuk card" I pull when my 3 teenage boys give me a hard time about doing something.  IT is the equivalent of a jolting guilt trip...but sometimes reality needs to be acknowledged.  My husband hates the leuk card because it does slap him back into the reality of what I have and the unknowns and the scary part of it. But just like Carrie, he can also respond oppositely and say...don't pull the "leuk card", that isn't fair.

 

Having said that, communication is key.  I could feel us drifting farther away from each other after being so close after I was diagnosed. So, I planned a date night where we could talk. Away from the house and all the things that remind us of responsibilities.  And I shared with him my feelings about trying to continue to do it all, feeling for the most part fine, but knowing the reality.  Most days, I really don't want to talk about it.  But once in awhile, I want them to remember what is always in the back of my mind.  The fighting of the fatigue can be exhausting, not just physically, but mentally.  The minor side effects such as skin issues are maddening, even though not that traumatic. It is like your body has betrayed you and you don't even recognize it anymore. Then the inner battle begins with in me....I am lucky, I have CML..it is treatable and something else will most likey be my demise... right...but I have CML and that fact just pisses me off.  That talk really helped my husband to understand my perspective. I am not saying that works for everyone, but I will guarantee, your spouses have no idea what you are feeling inside...unless you tell them.  I hope that helps a little. Even us rocks need a a soft spot to land......

[dede5]

I've already made my statement about my marriage, but I'm also finding it interesting how many people are doing the same thing I do. I put on a brave front for my family, and then resent them for not knowing how I feel. I feel trapped on so many levels. One of which is that I feel I have to bear the burden alone so that I don't have to hurt them. Can't stand to see the looks on their faces that I saw the day I first told them. I'm also the strong one. I've carried that role like a boss. Neither they (my family) nor I know how to do it any other way. So trapped I will stay, and Jake will be the 'wind beneath my wings', so that I can continue the charade as long as possible.