Wednesday, June 24, 2009

Arizona Update:Sleeping!!

It's finally happened! Christopher has finally started to sleep through the night! The other night he slept almost 8 HOURS! Then he will wake up to eat for about an hour then go back to sleep for another 3 to 4 hours. Isn't that GREAT! Of course, right now, I'm tired because Christopher decided to break up his sleeptime into three intervals instead of just the two, but that's ok. Finally the evening is not the scariest time of the day for me. I can actually handle the nights on my own...sort of. I still really need the company. Having Ben next to me even though he can't help out much is like having the little night light scares away all the boogymen even just with that little light.

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

Arizona Update:Father's Day

If the picture seems blurry to you, it's not don't need to see a's just everytime I try to take a picture with Ben or the baby, either one of them wiggle! Neither one of them can just sit still and take a picture. Christopher just can't wait to meet the next person coming along and Ben always complains he's tired and has to sit down...something to do with side effects BLAH BLAH BLAH! (Just kidding! I mean, he does side effects and I really don't make fun of them...just Ben, I make fun of Ben.) So, anyway! Here's a few pictures of Ben's first Father's Day! This one was taken in a room at The Center called "The Quiet Room". Incidentally, this room has a very large television in it and it's very small, but you can't hear Christopher screaming too much when you are outside the room, so I guess it works!

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.

Here's another one of them at church...guess we weren't paying attention to the speaker too well. But look at Christopher! He's SO CUTE I couldn't resist!

Yep, you guessed it! Another church picture, but look! Christopher is paying attention! What a good little boy.
This was my cheapo Father's Day "card" to Ben. We were at Macaroni Grill (a present given to him from the folks from the hotel!) and I wrote my little message on the paper tablecloth. AWWW...aren't I cute? :P
But seriously. Ben has turned out to be a GREAT father! Not to say that I thought he was going to be a bad dad, it's just that neither one of us really had any experience with babies. You might say that no one really does, but a lot of people have younger siblings and took care of them. When Ben had baby siblings, he was too small to take care of them or to ever notice them in way that he felt necessary to care for them. He was still a kid himself and concerned about "his" world and how it revolved around him. That's not a bad thing! He was, what, seven when his little brother was born?! I, on the other hand, had no other younger siblings, just an older sister who was eight when I was born. Sure, both of us may have babysat or helped looked after other children as we grew up, but NEWBORNS? That's a WHOLE new ballgame! I had helped out a neighbor with her new babies everytime because she had "C" sections with her children, but I never really helped out. I would just lift her baby out of the crib and hand them over to her.
But I think Ben has really matured and grown and I know that sounds a bit redundant, but if you think about it, the words are truly different. Ben has matured in a way that he is able to step out of his own world and care whole-heartedly for someone else--no questions asked! If Christopher needs something, Ben is the first one to try and figure out what exactly Christopher is wanting, and then gets it for him. Ben has also grown into a real, true man. A man that cares for and loves his son and would do anything for him. Ben is a wonderful example of what a "real" man is. A "real" man doesn't have to know everything there is to know about cars or sports, he has to know everything there is to know about caring for and providing for a family. A "real" man is a man who smiles and takes pride in the family he has made and shows his love for his family so that everyone around him knows and feels that love. Ben is all of this and more! I love you Ben...Happy Father's Day!
OH Yeah! Just one more picture...
This is what happens when grandma comes to visit and help out all the way down in (VERY HOT) Arizona! Not only did Christopher start sleeping about 6-7 hours at one go, Ben and I also got some sleep...which was more precious than even this picture! Thank you SO MUCH Jocelyn!!!

Monday, June 15, 2009

Arizona Update:Shot Bear

Today, Ben finally received some pain medication--Vicodin. He said it hit him like a wave and made him feel like a shot bear. I thought that was funny because that's sort of the way he looked too...just kind of wandering around looking loopy! The problem is it exasperates his already crippling fatigue, but I guess if the pain is gone maybe he won't have to lug his poor body around looking like one big ball of pain. Anything to make his life any bit better I'm all for!

OH! And today, Jana, gave us a BUNCH of totally cool baby stuff! It was really funny hauling out all of this baby paraphernalia out of The Center this afternoon and bringing it into our humble abode at the hotel! Some people seeing us for the first time thought that we brought all that stuff with us everytime we go to The Center! We got a really cool swing that swings both front and side to side, a portable swing, a VERY nice vibration chair, changing pad, tons of books and she still has more! I'm sure I left out some stuff because there was so much, but we are going to wear that stuff out! Man, Christopher totally made out with this stuff! Thank you Jana!! We love ya girl! :)

Sunday, June 14, 2009

Arizona Update:Chain Gang

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 gives us both something to look forward to!

Wednesday, June 10, 2009

Arizona Update:FOUR Months Old!!

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.

Here are a few of my attempts at trying to get a good picture of Christopher smiling.

See? Just too cute for the camera! These pictures were taken with the assistance of others trying to distract him, too! I'm in big trouble too because he likes my phone now because I keep taking pictures of him. :p

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!

This is Marcia. Marcia, Marcia Marcia! She works at The Hilton where we stay. She has been battling colon cancer and Ben's cancer buddy. Even though her life is totally crazy (no, really!) she keeps trying to do everything she can to make our stay in Arizona the best it can be. I told you she works at the hotel, but this picture is of her at The Center! She came to help take care of Christopher and hang out with me...on her day off! Totally SWEET!

Saturday, June 6, 2009

Arizona Update:Dumb Doctors!

This is another picture from the Chiluly Glass Sculptures at the Botanical Gardens. It's a boat filled with glass balls. It's pretty cool!

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 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

Arizona Update:Do's and Don'ts

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.

Arizona Update:Some Hiccups

This picture is more of the "Chiluly Glass" display at the Botanical Gardens.
So, today was kind of a blow to us. Nothing too bad or anything, just a sort of sad thing. Ben wears his chemo usually Monday through Friday, but has been able to take it off for the weekend. The weekend has been a sort of saving grace for the both of us. For Ben because he has a couple of days that he doesn't have to worry about leaving behind a pack that's attatched to him and for me because that would be my time to cuddle him without having to worry about his tubes and stuff. Well, today Ben was told he was going to have to wear his chemo breaks. So no cordless snuggles or easier shower days. The doctor today told him that Ben was given the wrong information and that he should have been wearing the pack always without any days off. So there's the worry that we haven't been doing enough either!
Ben was given a steroid treatment to help combat any sick feelings or fatigue, but the steroids gave him stomach acid issues which made him have violent hiccups all last night. It was difficult on him because Christopher kept us up all night the night before so poor Ben was already tired and now couldn't sleep because of the hiccups. Well, the hiccups have subsided somewhat, and he's dealing with the acid (we'll pick up some Prilosec at the store tonight) but we're both bummed about having him be hooked up until we leave. It just makes the days here seem longer.