Saturday, August 8, 2009
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
Friday, July 31, 2009
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,
Monday, July 27, 2009
Tuesday, July 14, 2009
Sunday, July 5, 2009
Saturday, July 4, 2009
Wednesday, June 24, 2009
OH! That reminds me. We might be able to come home in a week from today! We will LOVE to have everyone over...just as soon as I can clean my house. We left in such a hurry that I never actually got any housecleaning done and I know my house is such a mess.
The scheduling here wants Ben to come back for surgery just two weeks after being home so we're trying to get that all settled in the next two days or so. So, here's my chance to solicite any and every one...I could use some companionship during the days and nights while Ben is gone. It looks like when he goes back down for surgery he might be at The Center for two weeks or so and I don't do well when he is gone. I know everyone has their own things going on so I won't ask anyone directly. Just a play-date or a sleep-over or even just an hour to sit and talk. I'm still having a real hard time dealing with Ben's cancer and having to watch him be in so much discomfort and fatigued. It's difficult still, knowing there is nothing I can do to stop his pain.
Tuesday, June 23, 2009
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.
Monday, June 15, 2009
Sunday, June 14, 2009
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!
Wednesday, June 10, 2009
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.
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!
Saturday, June 6, 2009
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!
Wednesday, June 3, 2009
I understand this cancer thing is a bit overwhelming for everybody and quite often you don't know what to do or say. A friend here at The Center who is also going through cancer treatments (she works here too) gave me a little card of "Do's and Don'ts" of "How to be a good friend to a person with cancer" so I will pass it along to you all in hopes that it give some ideas to crack the ice. Some of these things may not apply to this particular situation, but it may help you with others or just later on down the road. You may know these things already and that's good. Then this advice is for those who may be at a loss of what to do or say.
*offer your presence often, be a good listener when they are ready to talk.
*talk about things other than their cancer.
*say,"I love you" and be yourself.
*ask what you can do to help--be sincere and specific so that they know you mean it. If they can't come up with anything, ask again in another week or so.
*use disposable dishware when delivering food to reduce the stress of returning them.
*arrange a phone chain to update friends of their condition, treatment, etc. (Be sure to get approval first.)
*offer to help by driving them to and from appoinments, taking their kids to childcare and doing housecleaning, gardening, cooking, shopping, yard work or babysitting.
*respect how they choose to deal with their cancer.
*tell them that everything's going to be all right because you don't know.
*tell them you know how they feel because you probably don't.
*be afraid to admit that you don't know what to say when you really are at a loss for words.
*be afraid to touch them, but don't force it either.
*hesitate to call them or leave them a message to let them know you're thinking of them.
*avoid the subject of cancer if that's what they want to talk about.
*be afraid to talk about your life. Just because they're sick it doesn't always mean that they are not interested in hearing about you.
*discount the real feelings they may be having by telling them no to feel that way, not to worry, not to be scared, or not to cry.
*share advice unless asked.
*be afraid to talk about difficult subjects. Ask them how they're feeling.
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