aaaaaaaaaaaaaaaaaaaaaaarrrrrrrrgggggggggggggghhhhhhhhhhhhhhh!!!!!!!!!!!!!!

I was doing so well,
what happened?

I suppose overall I'm doing ok again,

the doc's figured out that my extreame pain is/was causesd by gas in my intestines,

I have taken in the past 3 days nearly every controlled narcotic available, and none seem to really do much, I've gotten as much relief out of the gas x that took 3 days to get approved ( >p!!!) as I have out of illegal stuff (what the heck???)

I just want to be normal again, and I want to come home!!! and to be able to take care of myself, if that really too much to ask??

sorry if my venting bothers anyone,

Chrystal and jack hale came over to visit last min today, and I'm so grateful they came at my best overall of the day

please keep praying for me everyone, I still need it,

thank you, I love you all, Ben

Arizona Update - and the results are in . . .

Last night I won at bingo twice, I didn't like any of the prizes so I took a piece of the decor, and they allowed me, the picture is kinda bad but I like it =)

I know no one came here to see what I won at cancer patient bingo, so with n further ado

Today I had my "final exam" before surgery...

I feel very guilty for being disappointed, I have basically been praying for this result since I found out I have rectal cancer;

My body reacted very well to the chemo/radiation. (I'm very glad to know that misery wasn't for nothing) The tumor has shrunken significantly and the surgeon will not need to remove any of my internal organs completely. (just most of one)

Although compared to losing half of my pelvic organs and having a permanent colostomy, being told most of my rectum will be removed, (as well as assorted lymph nodes and some surrounding fat/tissue) with the remainder being reconnected to my large intestine feels like being told that;

"Instead of receiving a gun shot to my face it'll just be to my hand." (really I do prefer that, but it's kinda hard to be excited about it)

That said I am very grateful to everyone for all of their prayers, I feel I wouldn't be doing as well as I am without all of your love and support, but, of course, I will still need them to get through surgery, recovery and the remaining high dose chemo.

I know I ask alot of others, but I hoped that I might importune a few of you to "join me" in a fast, as i myself will not be allowed to eat this Sunday, (as preparation for the surgery) that my surgery goes well, quickly and for a rapid recovery so that I might return home as soon as possible

thank you all,

I love you,

Ben

Hey there...

I realize that I come off more than a little strong when talking about or trying to deal with what's going on right now with our little family. I apologize. I'm not very good at expressing any other emotion...except I think I have "anger" down pat! I know everyone is going through their own struggles, trial(s), personal hells, what have you and I know we could all use more than a little support. Right now what Ben and I could use is a little note from you to say,"hi, I'm thinking of you and I care." Everything is overwhelming for us right now and we just need to hear from you in a loving way. If you tell us what you need, we could try to accommodate. We know that we have been lacking in the "helpful" department and are trying to rectify that the best way we can right now. I understand a note isn't going to pay the bills, get you a job or save the world, but it might brighten your day. I know it would brighten ours. We are just looking for some virtual hugs right now, but if you are local, we will gladly accept the real thing too!

Sorry for the confusion

I have been (unsuccessfully) trying to blog via cell phone. As most of you know, we are home now. Ben will be heading back down to Arizona on the 29th of July and has surgery scheduled for the 3rd of August. Christopher and I will be staying behind unless Ben gets bad news about what kind of surgery needs to be done. The doctors won't know what kind of surgery there will be due to the location of the tumor, so we are waiting with baited breath to hear what they plan to do. I won't be going down because it takes a toll on Christopher (and Gus kitty). It has been two weeks now and Christopher is still trying to get used to being home. Half of his life has been living in a hotel! I will do my best to keep you all informed when Ben does go down to The Center, but for now I have to spend as much time with him as possible...I'm a bit needy and HATE it when he goes away!

Ben is back in the hospital and i am back at home...alone...again

Ben Update

So, sorry for the weird blog...I tried to update from my phone and it didn't translate very well. Anyway, we are home, but life is still strange and unreal. It seems that Ben, me and Christopher have changed but not our house or places around us. Ben says that we are not the same people and I'm starting to believe him.

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 on...it 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.

Arizona Update:Father's Day

If the picture seems blurry to you, it's not you...you don't need to see a doctor...it'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!!!

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! :)

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 well...it gives us both something to look forward to!

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!

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 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!

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.

do....

*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.

don't...

*tell them that everything's going to be all right because you don't know.

don't...

*tell them you know how they feel because you probably don't.

don't...

*be afraid to admit that you don't know what to say when you really are at a loss for words.

don't...

*be afraid to touch them, but don't force it either.

don't...

*hesitate to call them or leave them a message to let them know you're thinking of them.

don't...

*avoid the subject of cancer if that's what they want to talk about.

don't...

*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.

don't...

*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.

don't...

*share advice unless asked.

don't...

*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 EVERYDAY...no 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.

Arizona Update:It's Not the Blow That Makes You Stronger...

...It's how you keep moving forward.

Okay. I think I'm ready to move on now. I'm still angry about the situation and mad at God, but I'll get over it. I'm ready to stop whining and start being there for Ben and for Christopher. I do realize there are some good things that have and will come from all of this craziness. Like, all the friends we have made, whether they're here just for this "season" or they're here for always. The point is, they are here. And I think Ben will be appreciated more...I hope. I know I sometimes took it for granted how good I have it with Ben at my side. He does A LOT...nearly everything! He has been there for me through all of my miscarriages, even when I didn't want to be here at all. He did everything except carry Christopher when I was pregnant! He had to give me the very painful drugs and I can't even be there while others do that to him. I know Ben deserves better than what he's had so far. I can't go back and try to make it up to him, I can just do better.

There are two examples that I'm going to emulate from now on. One was from a Relief Society lesson where someone was given a small stack of books. The teacher said to try and lift up that stack of books. The woman looked a bit confused and wondered what the trick was (as there is with all object lessons), but she eventually picked up the books. It was easy. The books were light, no problem. The books were set back down and the teacher told the woman to simply pick up the books. Without hesitation, the woman lifted the books. The lesson:"try". If you try, you might hesitate and wonder if it can be done, but if told to simply DO then you know what is expected and you do.

The other example is from going to a friend's church last week. Her preacher used the example of the ATM machine. In the ATM our hard earned cash awaits us. We approach the machine and it commands us right away to put in our pin number. Without batting an eyelash we obey. We go through a series of other commands to finally reap our reward (our money) and walk away now prepared to do whatever we had intended. But the preacher said that suppose the ATM machine was God. He gives us our series of commands so that we may reap our rewards and gifts from Him. Except when He asks, we hesitate. We ask,"Why?" If we respond the same way to God the same way we do to the ATM, life would go a lot smoother.

SO...I'm going to stop butting heads with God...I'm going to stop "trying" and do better at "doing". And when He asks me to GO I won't ask why I will just go. I'm not perfect and I have acquired some bad habits, but I'm ready to learn how to do better. I know I will screw up sometimes along the way, but I know I won't be judged on how I fell but on how I kept on going.

Our Address

Okay. We keep forgetting to post our address so here it is...finally! 11450 W. Hilton Way, Avondale, AZ 85323 c/o Ben Passanando rm#129 and you can always reach us on our cell phones.

Arizona Update:Confessions of an Emotional Eater

My issue with food has always been that I hated it. I didn't like to eat and I never found any pleasure in eating. But now I have found that I have gained about 15 pounds or more because I made food my drug of choice. I think it's more like my excuse. There's an Indian tribe or maybe just an Indian tradition where, if someone dies, you can't cry for them or you will ruin their chances for happiness in the afterlife. So, what the mourners do is break their little pinky finger so they have something to cry about. I'm the same way. I don't want to complain about what's going on here and I don't want to cry about it, but if I'm fatter or even just sore from over-eating I have a reason to be upset. Of course it's a double-edged sword because I do it to myself so there's no one else to be mad at but myself. Is that screwed up or what?!

The problem..okay ONE of the problems I have run into is that when things are going okay like right now I still can't stop eating. My only saving grace is that what I want to eat, of course, is sweet stuff and since this isn't home the place here isn't stacked with free goodies to eat. I have to make an effort to go out and buy it with the money we don't have. So, if we don't have it in the hotel room I go out to the lobby and get some cocoa which makes me wired. Dummy me! Now I've just learned that the sister hotel across the parking lot has free cookies all the time and supposedly they are really good. UH OH!

Arizona Update:SO CUUUTE!!

These are SO CUTE!! I know I'm partial, but seriously! They're a bit blurry because Christopher hardly ever stands still. And, oh yeah! He IS standing on his own practically. Ben is just barely holding onto his hands so Christopher can steady himself, but otherwise he is totally on his own! He's been doing this for at least a month, but he is just getting the hang of keeping his legs straight and sturdy on solid ground. And he is SO big...I haven't weighed him, but he's got to be 13 pounds by now if not more! He keeps growing out of the clothes we brought for him, but our very good friends back home have helped out A LOT! (You know who you are!) Thank you!

Hey those pictures turned out better than I thought they would!!

It was all very last minute but last night the center had an outing to "Desert Botanical Gardens" where they were having a display by some famous glass blower, I had seen an advertisement for it and had really wanted to go but it was across town, and outside, so Blythe couldn't go (being unable to sweat and all)

Well against my better judgement, I left her to take care of the baby for a few hours, and surprisingly enough I'd have to say, walking through the desert is hot and tiring, even at night, the above photo was probably my favorite display, the one below is what most of them were like lots of tubes of glass, perhaps I'm hard to impress, I overheard an employee of the park say that throughout the park there were over 12,000 individual pieces of glass that took 5 semi's to move, and in all of the transportation and installation only 6 pieces broke, that actually is pretty impressive.

well, Blythe is out at enrichment tonight so I should go rest, in case this post seems too happy-

I still have cancer, but my cancer levels in my blood are about half the level that I remember being tested for a month ago, (yay chemo, :p, at least it's working)

thank you for your prayers, they seem to be working,

Ben

Arizona Update:3 1/2 Months Old...It Gets Easier Right?

Sure, he's cute NOW! But get him at a restaurant or the movies and he turns into the Devil Child! (Note the "WARNING" label next to him? It means,"Don't take baby out in public unless you want a scene!") Actually, it's usually because he's tired, but he is inconsolable when he's cranky and we can never time it just right. Yes, I have a schedule and yes, I do adhere to it as much as humanly possible, but it is still VERY difficult.

When Christopher was fairly new and having difficulty sleeping everyone said it would get easier. "Just watch. At six weeks he'll be sleeping and it will get much easier." NOT! "Just wait, at 3 months it will get easier." Still waiting. A gentleman at the restaurant we attempted to eat at tonight said it doesn't get easier it just gets different. Three months ago was different than it is right now...sort of. Problem is, the poor kid hasn't had a break from his psycho mom!

A friend wrote to me about the scripture regarding enduring afflictions well and she supposed that "enduring well" meant holding back the tears and putting on a brave face. Obviously I'm not that person and if that's what it means to endure well, then I'm screwed! Really, I've never been a believer of suffering in silence. I think that's stupid! For one thing, people always say to ask for help or don't hold it all inside, but then praise the people that do! All I know is that is not the way I deal with things so much anymore. I used to and I was a VERY angry person. I mean, I'm mad right now but not crazy mad or anything.

All I want is for something, one thing, to be easy. I was hoping it was going to be Christopher, but it's not. I guess the easy thing for me has been to make friends. Since I don't have family or friends already down here, the friends thing has been pretty important to me. I hope that Ben's side-effects go easy on him. This year is an important one for Christopher and I'm afraid Ben might miss or forget a lot of it. And with all the angst I have, I'm worried I'm going to miss it too.

P.S. Read "Hitchhiker's Guide to the Galaxy" for an answer on what Towel Day is...or just ask Merri. :)

Sorry I dont write as much as Blythe does

But I do have a good excuse, being all chemo-radiated and all, I haven't had either done in 2 days (as Peggy told me, cancer takes weekends and holidays off) and I feel almost back to normal because of the low dose of chemo I get, it's basically all out of my system now.

So I really should let everyone know, that while still not something I would volunteer for the radiation has not been nearly as bad since the first day and my decency has not been completely compromised again, (fingers crossed for the future) perhaps because it was obvious that I was greatly bothered by it all, every day something further has been done to make it less traumatic, I truly appreciate that (and I'm not just saying that because the center knows about this blog and is waiting for me to say something else about them, in fact I'm sure someone there will comment on the fact that I said that, which is rather ironic)

so anyway HAPPY TOWEL DAY!!! and happy memorial day!

thank you for reading, and caring

Ben

Arizona Update:Scare

So, this morning right after our baby wake-up call (a.k.a. Christopher deciding when we all wake) around 6:30am, Ben rolled out of bed to see why he was feeling wet. There was about a nine inch blood/chemo spot on his side of the bed. Sometime in the early morning Ben had rolled over onto his tubing linking his chemo to his port and it snapped, leaking blood and chemo onto the bed. It was really scary to see. I almost passed out! Not because I have a blood issue (I only do when it's my own blood), but because the love of my life was bleeding and oozing and my baby was also lying right next to it! Plus, we had a guest over last night. Brian, Ben's friend from West Virginia that moved to Tucsan not to long ago was down for a visit.

Ben called The Center to see what needed to be done then woke up his friend so he could drive him over there. Meanwhile, I had to stay calm while feeding the baby and we all know how good at being calm I am! I rushed into the bathroom to freak out a bit, then collected myself and tried to help any way I could.

Ben went to The Center and got unhooked and checked to make sure his port wasn't blocked. Everything went good there and he was on his way back to the hotel. We had to let the hotel what had happened and instruct them how to get rid of the sheets since now they contained toxic waste! They were very kind and obliging like always and cleaned the rest of the room while they were there.

The rest of the day has been pretty uneventful. We did have the Bishop and 2nd Counselor of the Elder's Quorum come and give Ben a blessing earlier. I don't know if that really helped, but I guess it's a step in the right direction.

Arizona Update:He's 13 Weeks

It's not a very good picture. I took it through the little plastic window of his stroller because he's sleeping and that is so rare and I didn't want to wake him up. I'm officially "that mom". When people ask, "how old is he?" I say, "13 weeks, oh I mean, 3 months." :p Christopher is growing so fast too. He's already outgrown 4 going on five outfits we brought. We bought him a cute one the other day at Target. He gets taken care of most of the day by people here at The Center which is a nice break and allows some alone and nap time for Ben and I. We have people who fight to see who gets to take care of him next and who can put him to sleep fastest. Today we had another baby come in, but Christopher was WAY cuter and more cuddly. Plus that baby was five or six months old.

Every day here feels like an eternity. People walk by and always say how fast the baby will grow up and how we'll long for the baby days again. It doesn't feel fast and I will have wished we just had the baby days...period!

Ben's hooked up to his chemo pump that he carries everywhere with him and he's started his radiation. The effects are starting to come around and it's very scary for me to watch. He gets sick and tired very easily even though he won't admit it. I'm not used to him being sick and it's frustrating having to sit back and let it happen to him since there's nothing I can do to make it better. I try and let him get enough sleep. I take care of the baby through the night so he doesn't have to (except this morning...baby was VERY fussy). Ben took his first shower with the pump and it was very frustrating for him. He's got to keep his port area dry and keep water from getting into the I.V. hook-up thingys. AND he's got to have this bag hanging from the curtain rod with his death liquid tube and try to not have that thing tangle!

It's only Day 3 of radiation treatment out of 28 and I feel that I won't make it much less Ben. It's especially difficult because I can't really hug Ben for fear of hurting him where his port is or tugging on his tubing! And we're bed cuddlers and that's hard to do now too. We both used to wake up in the middle of the night together just because we're conditioned from when I was pregnant, but now I'm up by myself and it's lonely.

Arizona Update:Is This Thing On?!

I understand that for a lot of you that might be reading this blog that this whole cancer thing might be a bit over-whelming. And I guess I understand that it might be difficult to think of something to say, but on this end, on Ben and my end, it's really lonely. To continue to write day after day and go through everything we go through day after day and still not hear a so much as a "hey, how's it going?" is more than a bit lonely. We've heard from a few people and to those few, thank you. Your words, whatever and whenever they are, are helpful. It doesn't take much. We just need to know you're out there...that you care...that you're concerned and love us. It's very hard being here with no family, no close friends (except the new ones we have to make to stay sane at The Center). I understand if you don't know how it is and don't what to say, but Ben really needs to know his family is there for him and that they care. I know you do, you just may not know how to express it. That's ok, just say that. We understand. Trust me.

My own personal hell -or- New forms of torture **DONT READ THIS IF YOU THINK IT MAY BOTHER YOU AS MUCH AS IT HAS ME!**

To be honest I had intended to have my first post be some kind of light commentary on how nice everyone is or how I'm still doing OK, unfortunately, by the time I got access to write to the blog, and got around to actually writing, here we are;

Blythe mentioned the conditions of my radiation treatment, but with her own stress, my inconsolibility/inability to talk about it for a while and the baby reacting to us both, it's not hard to see that some of the details were lost/changed unintentionally,

For some reason I feel the need to share my experience, though I still can't talk about it, I'm sure I'm doing this for me because I cannot fathom a way that anyone else could benefit from the existence of this post.

I think I should start this out with the brief explanation that Blythe is the only girl I have ever really kissed, and the last woman to see me completely naked before her was a pediatrician when I think i was eight.

Today I went in for my first dose of radiation therapy, the therapist is someone who I believe, in nearly any normal situation I could be good friends with, there were three women in total who oversaw my treatment today (there are no men who do this at this facility) but I was promised that the most private parts of my anatomy would remain private, a promise I clung to like a drowning man to a life preserver.

To begin I was asked to remove all clothing below my waist and have only a thin sheet to use as a guard to my modesty, then I was instructed to lay on a hard table which had a "pillow" made from the same hard material, after getting situated I was asked if I was comfortable (really)

Well, being as I have rectal cancer my condition requires full pelvic radiation, the table was raised to put me about 4 feet off the ground, my feet were bound so they wouldn't move and I was given some sort of a foam ring to hold with both hands.

I was told that under no circumstances was I to let go, because any movement could mess up the location of the precision radiation, and it could kill healthy tissue instead of the tumor.

After being raised to this position, in which I could not move or see anything that was happening, the nurse then lowered the sheet from my waist to just barley covering my private area by perhaps a few centimeters and leaving my hips completely exposed,

This was bad, but i figured I could endure it, unfortunately after a few minutes of this, the head Dr. said she needed to have a little more access to the skin, and the sheet was brought to perhaps one centimeter from full nudity,

Keep in mind that I still could not move or really even talk at this point and was at full mercy to whatever they wanted to do.

Still with eternal optimism, once again my fledgling hope of retaining some dignity resurfaced as instruments were aligned further for a few more minutes,

Unfortunately it was not to be, the Dr said she still could not align it correctly, and while I lay there completely unable to move, and unable to speak the sheet was moved enough,

I could feel the cold,

I was completely exposed,

they promised I wouldn't be, I prayed I wouldn't be, I hoped and begged, but they decided it had to be this way for me to receive the treatment.

My options left at that point and this are to endure the most humiliating and degrading thing I have ever been through, (and do it 27 more times) or risk a much higher chance of recurrence and possibly, I suppose, die from the cancer, because I refused treatment.

and so I endure,

I swear I'm really not sharing this to make you think I'm some great person (if I was this probably wouldn't trouble me this way, and I'd see a big picture, or whatever) or to gain sympathy, as it is almost no one in the hospital could understand why it bothered me at all, (if one more person tells me "it's OK there a Dr" I really might flip out)

but I guess I share this so you know your prayers and thoughts are appreciated now more than ever, thank you, I really need them

I'm sorry to end in such a harsh way, but i feel the need to warn anyone who could possibly feel the need to make light or joke about this situation, perhaps to try to defuse the situation or to make me feel better, I can't have you in my life through this, I just couldn't take it.

Please don't be offended, it's just that I've just never needed anything more in my life than I need understanding right now.

Arizona Update:Pain

I got to experience a different kind of pain today. It's not the kind of pain you get when you stub your toe or prick your finger. It's the kind of pain you get when you have to decide whom to comfort--the crying baby that's so loud you're worried you're going to get kicked out, or the crying husband that is going through something so traumatic that makes a man cry that doesn't usually cry. Then there's the pain of having to watch and allow strangers, essentially, burn the insides of a most beloved one to kill everything in site and then pump poison in on top of that...EVERYDAY!

If you haven't guessed, Ben started his radiation and chemotherapy today. The actual radiation itself isn't so bad, Ben said, but it is humiliating. He has to lie there completely naked in front of about five women while they pin point exactly where they need to aim the radiation. So, they're all staring down through cameras that zoom in on "that" area. It's very embarrassing and anyone who doesn't think so needs to think hard about that and truly imagine themselves in Ben's shoes, or at least not make fun of Ben for being embarrassed/humiliated.

The chemo stuff is probably the most scary for me. With the radiation they tell you they will be a burning sensation and some fatigue, but with chemo they give you this big booklet of all the things that could and probably will happen. Anywhere from extreme fatigue to excessive vomiting to bleeding uncontrollably to the inability to do just about anything. The people here try to comfort saying that a lot of this might not happen because of the kind of chemo Ben's having, but it's still an option. The other thing real scary about the chemo is, unlike the radiation where they zap you and you move on with the rest of your day, Ben has a constant reminder, 24/7, that he has to carry around with him. And that's not all! If he breaks the pump or it starts leaking, there's a whole procedure with a packet to handle just that situation. If it leaks, the baby and I have to get far away because again this stuff being pumped into Ben is poison, and he has to treat it like a chemical spill. Think Chernobyl on a very small, but still scary, scale!

Arizona Update:The Heat is ON!

WHEW! It is HOT! Today's high is supposed to be 107+ degrees! I'm glad we get to be inside with free air conditioning that works!

Right now we are waiting on a phone call to start Ben's therapy. We had setbacks last week with the cryobanking and with Ben's bleeding. We were hoping (strong word but best I can do) to start today...at least with the radiation. The chemo shouldn't be too tough to start up either. They would just hook up the chemo to Ben's port (after putting some numbing cream around the area) and he would wear a fanny pack of chemo for a month or so. We're hoping for little to no reaction to the chemo. Maybe a bit singed from the radiation, but that's about it. Guess we'll just have to wait and see.

Arizona Update:Rough Ride Ahead

The people here in Arizona (doesn't matter what area) are extremely kind. The people at The Center bend over backwards to make your stay as comfortable as possible. The people at the Homewood Suites treat you like the favorites in the family. So why do I cry everyday? Why is Christopher difficult to handle most of the day? Why are all the things that would make my day just a little bit easier not easy? And why am I the one that's a wreck and not Ben? I'm not the one with cancer, but I feel like I'm the sick one.

I wish we didn't have to go through any of this. I was hoping that after a hard time trying to bring a child into our lives that we would be able to just have this time to learn to be parents and not everything else. It's already difficult learning to be a parent and we have already had a pretty rough few years, so I thought Heavenly Father was finally going to give us a break, but I was wrong. I'm mad. I'm frustrated and I feel alone.

Arizona Update:Problems

We had a bit of a stall in Ben's treatment yesterday. When we got back to the hotel and relaxed a bit after Ben's surgery, he started bleeding real bad again. We called The Center, but had to leave messages since it was after 5pm and everyone had gone home. He bled pretty consistantly through the morning, but by the time anybody could get back to us he was almost all the way done with whatever had irritated his colon. But we went to The Center's urgent care clinic anyway just to make sure. They took a few blood tests and determined Ben was anemic, but that everything was pretty much OK.

Ben kept trying to tell them his reaction was probably due to some medication he was given during surgery, but no one could confirm that he had been given anything that would be considered a blood thinner. We did some research and found they do use heparin when inserting a port, but the nurses insisted they didn't use heparin and that in this facility they don't have heparin. BUT Ben ran into the surgeon and he admitted using a diluted form of heparin and that would definitely set off his bleeding. In fact, the doctor said that Ben's tumor will be bleeding from time to time and when they start killing it, it will bleed more!

Today, we had a follow-up with the urgent care clinic and Ben's blood count is low, but they suspect it has all to do with the bleeding. They were worried they might have to do a transfusion, but they have put that off unless his numbers keep going lower. Ben feels better now and we're about to go to The Center's "luau lunch"! Hopefully today will be our care-free day! Here's hopin'!

Arizona Update:Ben's first surgery

All went well for Ben's first surgery to put his port in. I don't know if you know what a port is, but it's a semi-permanent catheter or i.v. that's placed just under the skin and is hooked up to a major vein. In Ben's case, his carotid artery. The surgery was good, but Ben was a bit scared and his blood pressure was a bit high. The docs kept him around for a little while to make sure all was good, then they released him into my care. We had lunch and then went upstairs to watch a little t.v. and unwind.

I had a massage while Ben napped and a very sweet concierge, Jennifer, watched Christopher. My massage was nice, but I couldn't stop thinking about Christopher and hoping he was ok (I knew he was going to be hungry as soon as I left), I was worried about Ben and I was also a bit squished up top too so it was kind of uncomfortable. But it did work out some of the baby back stiffness I've had so that was good.

Nothing on the schedule for tomorrow, so I hope we can just sort of take a breather and let Ben finish his recuperation. He can't lift heavy things (including Christopher) for a couple of days so I want him to take it easy so he can heal better.

Christopher Open House for Blessing

Here's Christopher in his Blessing outfit...it was too big for him! I think the pants are the only thing that kind of fit that day. The shoes kept falling off and the vest was more like a dress! LOL

Me and Christopher

Of course gotta get a pic with daddy!

Christopher with aunt Steph

Megan and Wilson Durant with their son, Henry

Cute one of Henry Durant

Peggy, Andy and Elias Otter

Some more Passanando family

Steph and Steve



Peggy and Katy

My parents

Beka and Katy...too cute!