Sunday, May 31, 2009
Saturday, May 30, 2009
Friday, May 29, 2009
Thursday, May 28, 2009
thank you for your prayers, they seem to be working,
Monday, May 25, 2009
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
Thursday, May 21, 2009
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.
Tuesday, May 19, 2009
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!**
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.
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.
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
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.
Friday, May 15, 2009
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
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
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.
Peggy, Andy and Elias Otter
Some more Passanando family
Steph and Steve
Peggy and Katy
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.