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!