Sunday, May 31, 2009

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.

Saturday, May 30, 2009

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!

Friday, May 29, 2009

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!

Thursday, May 28, 2009

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,

Monday, May 25, 2009

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


Saturday, May 23, 2009

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.

Thursday, May 21, 2009

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 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.

Tuesday, May 19, 2009

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!

Saturday, May 16, 2009

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 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.

Friday, May 15, 2009

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.

Thursday, May 14, 2009

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'!

Tuesday, May 12, 2009

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 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!


Here's a cute succession of photos taken of Christopher when he was first born!

I think he looks like a cross between Mother Teresa and E.T.! LOL!

Arizona Update

This was Christopher getting ready for his first plane ride! Ben and I were nervous, but the little guy did GREAT! There was a bit at take-off where Christopher wasn't too sure about this trip, but I sang to him and gave him a bit of a bottle and he did fine.

Well, it's not quite a week yet, but there have been lots going on! The first day/night was interesting. We stayed at the very nice Wigwam Resort. It had a walk-in closet that dubbed as Christopher's bedroom, a big king-sized bed, robes to wear down to either of the pools and a front and back porch to sit at and just relax. BUT it was far away from anything! No stores, no real restaurants (unless you count the very expensive on-site ones) and no fridge or microwave. So the next morning the Cancer Treatment Centers of America (we'll call it "the Center" for short) found us a very nice hotel that had two rooms, a full fridge, a stove top, and a microwave...oh and a free shuttle to wherever we want to go! Oh! and they have free breakfast every day and free dinner Monday through Thursday! Cool huh?! It's called, Homewood Suites Hilton in Avondale, Arizona. The people there are VERY nice and obliging. They even gave me a beautiful bouquet of flowers for Mother's Day! That was only Day 2 of our 6 to 8 week stay here.

We were all set to start Ben's treatment on Monday, but The Center wanted us to visit the local cryobank, but we said we couldn't afford it. But there's apparently a program that helps couples with cancer and we signed up for that and are banking for a hopeful future brother or sister for Christopher. Now it's Tuesday and Ben is in surgery having a port put into his chest. It should be there for about a year. He's been kinda nervous about it so I hope all goes well.