Wednesday, June 24, 2009
OH! That reminds me. We might be able to come home in a week from today! We will LOVE to have everyone over...just as soon as I can clean my house. We left in such a hurry that I never actually got any housecleaning done and I know my house is such a mess.
The scheduling here wants Ben to come back for surgery just two weeks after being home so we're trying to get that all settled in the next two days or so. So, here's my chance to solicite any and every one...I could use some companionship during the days and nights while Ben is gone. It looks like when he goes back down for surgery he might be at The Center for two weeks or so and I don't do well when he is gone. I know everyone has their own things going on so I won't ask anyone directly. Just a play-date or a sleep-over or even just an hour to sit and talk. I'm still having a real hard time dealing with Ben's cancer and having to watch him be in so much discomfort and fatigued. It's difficult still, knowing there is nothing I can do to stop his pain.
Tuesday, June 23, 2009
If you can't tell, we're at church and, YEP! Another blurry picture! Oh well, they're both cute so I guess I'll just let it slide.
Monday, June 15, 2009
Sunday, June 14, 2009
Each link here represents a radiation treatment left for Ben. As you can see, there aren't very many left! YAY! So, hopefully we're done with treatments on the 26th of June and be on our way home sometime the following week! When we're done here we're home for a couple of months so Ben can recuperate before he has to go back for surgery. The surgery is the biggest hurdle to get over. We hope it will be a less invasive surgery that will cut out as little as possible. The doctors at The Center have high hopes that that's the way it is going to be. I'm worried it won't be so easy, but I'm sort of a pessimistic individual right now. I know I'm supposed to have a more positive outlook, but I'm still going through the grievance process. This is NOT how everything was supposed to be. And as much as Ben tries to reassure me that he won't die, the 20% chance that he could still lingers over my mind. Ben is also so vulnerable to illness because of the chemo. Now, I don't want that to be a deterant for anyone who would like to visit us when we finally make it home because we're going to need a lot of support. It just means that if you or your children are sick, let us know so we can have Ben put a mask on to protect him. But we still need people to come over and visit as much as they can. Ben is pretty weak from all the treatments and we won't be able to get out much and poor Christopher won't have his fan club surrounding him daily like before. :) But Ben is the "ever-positive" guy and trying to have that rub off on me. I just want to get the surgery done with. Then we just have chemo treatments to deal with pretty much after that. Those will last about 6 months or so, then he takes the test to see if the cancer is gone. So, as soon as we get home we will have 25% of this stuff done with! Can you tell I'm excited to leave? I'm all trunky and we still have two weeks or so to go! Oh well...it gives us both something to look forward to!
Wednesday, June 10, 2009
I've been trying to get a picture of Christopher smiling because he smiles SO big that dimples just pop right out, but he gets mesmerized by the camera and won't look into it when he smiles. Oh well.
Well, we're doing the "it gets worse before it gets better" thing. Ben is starting to feel the effects of his treatment...even if he won't admit it. A wife can tell. But we have a few friends here that try to help us out and make life a bit easier if they can. Let me introduce you!
This is Jana. She was our very first real friend here at The Center. She is SO sweet and funny and even though she's got her own issues, she does her best to help us out and make us feel better when we have bad days. She gives good hugs too and won't believe you if you tell her everything is "ok". She's also real good at putting Christopher to sleep for me. Love her!!
This is Jennifer (one of like 5!) She is just the sweetest woman in concierge at The Center. She also has the best parents...they are so kind and my personal crying friend! Oh and Christopher just can't get enough of her!
This Doe...yeah, that's her real name. cool huh! She is SO funny and makes a mean chocolate, peanut butter shake at The Center. Actually, she makes the perfect smoothy...whatever you want! She's great!
Saturday, June 6, 2009
So, the doctors. Everybody at The Center is pretty nice, but I think we have been here long enough for peoples' masks to start coming off. Some of the doctors have been pretty rude and arrogant and more than one person has advised us to just try and look past that right now. But you know me, I'm not very good at looking past people's faults...especially if it's a doctor who is working on someone I care about. When I mentioned the "looking past the arrogance" thing at a patient meeting, an advocate wanted to talk to me more about what exactly went on, but no one has talked to me yet.
And it's not the doctors, but some of the other people that work at The Center that have kind of bugged me lately. At those patient meetings the head of certain departments want to know how they can help us out or how they can do things better at The Center. I have asked if it was alright if some people watch Christopher while we are in with a doctor or even when we get lunch in the cafeteria. Every time they tell me it's OK, but then I get the person who was watching Christopher walking up to us saying that they were told they couldn't do that. See, the problem is, apparently, someone comes to our helper every time and lets them know they can't watch the baby, but no one has copped up to us and told us that no one can watch him. It's just a little frustrating that's all.
Well, it's been a few days since Ben's chemo was amped up a bit and he's starting to feel some of the effects of it. He's also feeling a bit of the radiations affects/effects (I never remember which one is correct) as well. Ben says he's feeling a bit burned or something to that effect on the small of his back. And just last night he had to go in to The Center's "urgent care" because he's having a problem of inflammation. The doctor said that could definitely be from the radiation. Ben was given some pain meds and we're hoping it doesn't get worse.
It's starting to get boring here. We've got the same thing every day, just about. Same food. Same places that we go. A very nice break from the norm was a friend of mine that used to live in Elk Grove, got married and moved down here a few years back. Just so happens, we're in his ward and I made friends with his wife at an Enrichment activity last week. They invited us to their place for Family Home Evening and it was WONDERFUL! The main thing that made it so great was their house. It wasn't anything out of the ordinary, just the fact that it WASN'T a hospital or a hotel...it was a HOME. It was SO nice, so comforting to be anywhere where we haven't been. It was so nice, in fact, that Christopher didn't cry once while we were there! Which is a feat in and of itself because if we try to go to a restaurant or the store that baby just screams his little head off. He goes from 0 to BABY in about 3.3 seconds! The, I guess, ironic thing is, for Christopher this whole crazy circus life is all he's really known and when we get back home and there's not scads of women coming up to steal him away at any given moment I just don't know what he will do. LOL!
Wednesday, June 3, 2009
I understand this cancer thing is a bit overwhelming for everybody and quite often you don't know what to do or say. A friend here at The Center who is also going through cancer treatments (she works here too) gave me a little card of "Do's and Don'ts" of "How to be a good friend to a person with cancer" so I will pass it along to you all in hopes that it give some ideas to crack the ice. Some of these things may not apply to this particular situation, but it may help you with others or just later on down the road. You may know these things already and that's good. Then this advice is for those who may be at a loss of what to do or say.
*offer your presence often, be a good listener when they are ready to talk.
*talk about things other than their cancer.
*say,"I love you" and be yourself.
*ask what you can do to help--be sincere and specific so that they know you mean it. If they can't come up with anything, ask again in another week or so.
*use disposable dishware when delivering food to reduce the stress of returning them.
*arrange a phone chain to update friends of their condition, treatment, etc. (Be sure to get approval first.)
*offer to help by driving them to and from appoinments, taking their kids to childcare and doing housecleaning, gardening, cooking, shopping, yard work or babysitting.
*respect how they choose to deal with their cancer.
*tell them that everything's going to be all right because you don't know.
*tell them you know how they feel because you probably don't.
*be afraid to admit that you don't know what to say when you really are at a loss for words.
*be afraid to touch them, but don't force it either.
*hesitate to call them or leave them a message to let them know you're thinking of them.
*avoid the subject of cancer if that's what they want to talk about.
*be afraid to talk about your life. Just because they're sick it doesn't always mean that they are not interested in hearing about you.
*discount the real feelings they may be having by telling them no to feel that way, not to worry, not to be scared, or not to cry.
*share advice unless asked.
*be afraid to talk about difficult subjects. Ask them how they're feeling.