Sick part III

she did better today. She still didn't eat very much but considerably more than she has eaten the last couple of days. Weigh in Thursday isn't going to be pretty. I didn't think she could look anymore skeletal than she has but I was wrong. I'm worried to say the least.  

Sick part II

She has still been really sick today. I got her some more anti depressants and Diane seems to think that, that might clear things back up. Hopefully tomorrow is better.

She has been so sick that getting her to eat anything today has been nigh unto impossible. To the best of my knowledge today she has had five or six sips of water, two spoons of stew, a fourth of a small apple, 2 or three sips of sprite. Short of sitting on her and forcing food down her throat there was nothing else i could do to get her to eat.  Anyway the forcing food into her wouldn't have worked because her stomach would have lovinlgy tossed it back at me after making it smell and look so much better than when I thoughtfully helped her consume it against her will to begin with. I'm also quite sure that while her stomach was violently returning the food it would gurgle in such a way as to translate to "nanny nanny boo-boo" in Old Stomachian.  

Sick

Katrina has been pretty sick this weekend. Probably the sickest she has been through all of this so far. I've got to watch the clock pretty closely and keep as much anti-nausea stuff in her as I can or she gets sick right on cue.

She has also had kind of a re-lapse in the clarity of her thinking. She'll say off the wall stuff ever once in a while again and it really feels like she can't tell the difference between things she dreamed and reality. (Example: she is going to be Chantry's Mayor (not our son, my friend Chantry) because he is too busy in young men's, and she just barely got done telling me how her "Junior People" need to come get her nose.) To be honest I'm more than a little worried by it all.

The other day she ran out of the anti-depressants they gave her in the hospital  because they didn't give her any refills and she wanted to try to go without it. I'm going to talk to Diane, our nurse, tomorrow about getting her back on them I don't know if that is playing into all this or not but she does seem to be down more than she has been since they put her on them in the hospital.

Don't ever sell you saddle.

Music has always been something that helps me get through things. It seems there is usually a song that I can bring to my mind with some little point that says just what I need when I need it. Here is one that is just chuck full of good advice that speaks to me quite often, but in particular right now.  I'll bold the lyrics I'm referring to.

Don't Ever Sell Your Saddle

Performed by Randy Travis
Composed by Kim Tribble, Bobby Whiteside

Daddy should've been a preacher man
'Cause everybody loved to hear him speak
He didn't always follow his own advice
But we got a sermon every week
He'd say trouble always starts as fun
And broken hearts will always mend
Tough times don't last, tough people do
And nothing breaks if it can bend.

Chorus:
Don't ever sell your saddle
Never owe another man
Watch where you spit on a windy day
Don't use words you don't understand
Find the Lord before you need him
And never lose your pride
Don't ever sell your saddle
'Cause life's a long, long ride.

Daddy never ran from anything
Always took his share of the blame
Had a heart big enough to fill a valley up
But hard enough to stop a train
He said only fight when you have to
'Cause there's always a faster gun
And you'll know a hero from a coward
When you see which way they run.
Chorus:
Don't ever sell your saddle
Never owe another man
Watch where you spit on a windy day
Don't use words you don't understand
Find the Lord before you need him
And never lose your pride
Don't ever sell your saddle
'Cause life's a long, long ride.

Daddy left me his old saddle
The day that he passed on
And these words are etched into my mind
Just like they were in stone.

Chorus:
Don't ever sell your saddle
Never owe another man
Watch where you spit on a windy day
Don't use words you don't understand
Find the Lord before you need him
And never lose your pride
Don't ever sell your saddle
'Cause life's a long, long ride.

Don't ever sell your saddle
'Cause life's a long, long ride...

6 to go.

Well, we have only six more radiation treatments to go now. It's weird to think about how quickly it had gone by but it also seems to drag on sometimes too. We sure are glad for the weekend though. The break from running to salt lake is nice.

1 week 1 day to go. 3 mini posts

Below are three mini posts share and enjoy.

Radiation
        
             So we are done with another week. Her nausea has slowly started to abate. She's now only sick in the mornings and we only have to give her anti nausea pills then as opposed to one or two more times a day on top of that. They told us today that they will set up an appointment after about a month from the end of our treatment to look at whether or not to do chemo. Her hair has started to slowly grow back but a lot of it is super light. Her sister is betting that it will be super light blond like her own. I'm betting it will be streaked with gray. We'll see, it's too short to tell right now.

Sixth Sense 

           Speaking of after about a month; Last night Katrina was telling her mom and me that she was going to take a month off before looking into chemo. I said "No you aren't you'll do what they say." Ha Ha shows what I know. I don't know what they did while they were poking around inside her head but she has some sort of extra sense now. That was just one example. There have been numerous times where I've been quietly thinking to myself about something and she'll start talking to me about it just like we had been having a conversation the whole time. Katrina, stay out of my head, there is barely enough room in here for the six of us as it is ;0P

Aging

        Katrina turned thirty this year and I'm not too far behind her. It's weird but I haven't really felt like I was aging all that much. It seemed like after about 19 or 21 I just stopped feeling any older while everyone who was younger slowly got caught up. I really felt like a big kid playing at being an adult. Oh sure I've learned in recent months that I can't sleep on the ground like I could when I was a scout without paying for it. I've also learned that I need to contact some physicists because the carpet in my house has a strange new gravitational pull after I've been sitting on it that it never had before. But I swear that the last couple of months have aged me far more than the last few years. I feel more like I should be approaching forty than thirty.




            

 

New Radiation

The new area that they are irradiating is significantly smaller since they are targeting just the tumor now. It means that her treatments goes way quicker. The problem is that with the college back in session the campus is jam packed with traffic so we really haven't seen any change in the amount of time it takes to drive down get treated and drive back. 

Another sunday.

Well we didn't make it to church today, but not because of her. Because is just didn't have the energy to get four people ready and to church this morning. I know lame, but I'm seriously starting to feel drained. Part of it is staying up until 11:00 at night trying to get some "me time."

She was having a bad day balance wise but that comes and goes and more and more frequently it's goes rather than comes.

 

Saturday.

She did good today. ( I feel like a broken record) She went and saw the new twilight movie. That's about it really. good and twilight. . . . yep.

2/3

Post 100 and we are two-thirds of the way done with radiation. Hurray! Starting Monday they will only target the tumor area. They got her all set up on the new machine today after they did her treatment.

She did pretty good today as far as eating. I tried to make sure she had more protein. hopefully we can put some weight back on.

99th post

Wow this is the 99th post to this blog. Crazy.

Anyway, her platelets were still good and they're are even seeing an increase in he white blood cell count as well. The problem is that she lost more weight. She is down to 96 pounds now. We went and bought some protein powder to add to what we have already been supplementing with. I told her I was going to start feeding her lead weights. I don't think she thought that was a good idea.

 

Thursday Morning

I watched Diary of a Wimpy kid on my laptop. It was funny!


Next I will watch Percy Jackson. But they messed up the main characters.

I made two cards at Cricut class last night.
I threw up only once today. Monday I start with radiation of just the tumor area brain. So I should feel better. We'll see.

platelets

Her platelets were back up to 140,000 which is only 10,000 under what is considered normal. This is great news as it is one less thing to worry about for now. She seems to be doing really well, and we've settled into a nice routine as far as naps, meals, travel, etc. which has reduced the stress a little.

I'm encouraging her to try to start back with Cricut classes. It was something she always enjoyed going to with her mom once a week and where I've noticed her energy level improving I'd like her to get out and start dong "normal" things again. Plus I think that scrap booking would make a great VOR exercise, to help with the double vision. It should also help her work on co-ordination which is another area that she continues to struggle with.   

Monday

I am now going to type on the computer. I have to type one letter at a time. I am very slow, but I will get faster as I type and watch what I am doing.

The Nausea

The Nausea is getting progressively worse. We had a pretty late night last night because of it so we weren't able to make it to church today since she slept until almost noon. It upsets her pretty bad when she gets sick. She feels bad about it and I can't convince her that it is perfectly normal for what she's going through and not to feel bad. I've just got to be better about getting her to take her pills regularly now. Up until now we've just been giving them to her as needed but that is not going to cut it.

The Fundraiser

The fundraiser went great. Katrina did awesome and made it through the whole thing. I was expecting her to give out and want to go home after a couple of hours. It was amazing, and I'm truly grateful to Nicole and her family and friends for putting it on for us. I'm also extremely grateful for all the wonderful things that people made to sell. It was truly spectacular. I wish that I could thank each and every person who came, those who made stuff, those who donated, and those who helped put it on. However, that would never be possible. So I want all of you to know that I truly do appreciate the part each of you played in this. 

I know that many of you are wondering what the amount of money we received was. I'm not entirely comfortable sharing that. We did do pretty well and it suffices to say that my stresses about medical bills are alleviated, at least for the time being. You never know what the future will hold but I pray we are walking out of the woods instead of just beginning our journey into its dark heart.

Words truly cannot express how I feel tonight. I was so surprised by who all showed up and all the wonderful beautiful things that were there. Thank you thank you, a million times thank you, to everyone.          

Halfway there

Well we are past the half way mark. Three weeks left, one more of total spine and brain then two of targeted radiation. It feels good to be over the hill on at least this round treatment.

This weekend is the fund raiser that is being done on our behalf. I'm anxious about it.I believe that I mentioned some of my trepidations about it in an earlier post so I won't go over them again.

I'm hoping to convince Katrina to try using a computer again in the next couple of days. hopefully she does well and can start posting again.

update 8-12-10

Her platelet count is decreasing, right now it's about 90,000. They are going to start drawing blood more often to watch it. She has also lost weight again. It doesn't help that A) she won't eat very much and B) she gives half of that to our kids every time. I'm going to have to physically sit and watch her eat every bite. GRrrrr.

I'm in trouble all the time. I do things wrong, I don't do things etc. as well as For stuff that happened years ago. Also I get in trouble for stuff that never happened. she freely recognizes that I didn't do them but she still upset at me just the same. She'll also do stuff and then I get in trouble for that which is beyond me how she always figures how how to make it my fault. The big one though, is doing things wrong. I don't match clothes good enough, I put her radiation lotion on wrong, leave her alone too long when I go to help the kids with something. etc. etc. etc.

If you want to understand what it's like look at it this way. Think about all the little stupid trivial things about your spouse that you wish were different, even the ones you let go of years ago and you don't even notice anymore. I'm talking about all the "Squeeze versus Roll the Tooth paste tube" kind of things. Super stupid stuff that doesn't really matter so you let it go and love them anyway. Now understand that your spouse probably has a list at least as long. Then take away their ability to keep those ideas to themselves. Not only will you hear about each and every one, but so will whoever else she happens to be talking to when she thinks about it. And remember that some of that stuff will be things that bother you about yourself as well but you keep hidden from other people.       

I just have to keep hoping that she will develop those filters again and not destroy my self image too much in the mean time.

I'm in trouble.

I'm going to let these two pictures do all the talking for this post.

Today

Ever catch yourself putting things in odd places? Like the milk in the cupboard? And do you know the feeling you get when you realize what you are doing makes no sense? I've felt that A LOT this evening. I get part way through a project and then walk away without realizing that I did it. For example. I sat Katrina down to the table for dinner then walked outside, watered my gardens, fed the dog, changed Chantry's diaper, then realized that Katrina was sitting at the table without food. Even as I type this I realize that i got part way through taking the garbage out  since it is trash pickup tomorrow.  I don't know about you but I suspect the garbage man is not going to drive his truck across my lawn and driveway to get the can that is currently parked at my front door. Nor, come to think of it, would I want him to.

The reason for my exhaustion is work. I had the annual august workshops yesterday and today. Top that with the stress and lack of sleep i already had and my body was/is on auto pilot. Heck, for all I know I'm sitting here pushing the letter "b" over and over again and you guys are sitting there thinking. "Wow, he must really like the letter b." (I don't even know if that made sense in words composed of multiple letters.) It's not physically draining to attend those but mentally; planning, learning, figuring, etc. Normally no big deal, but i think my brain is full and i better stop learning stuff before it explodes.

Now you're all thinking ( again assuming I'm not writing a doctoral thesis on languages comprised exclusively of the letter b)   , "Um, Scott that's great and all but how is Katrina, I mean she is the one with cancer after all, and you are just a nerd,"  and to you I say, good point.

She is having trouble with a "Sore throat" because of the radiation, But the doctor gave her a wonderful cocktail of Maalox, Benadryl, lidocaine, that she gets to swish, gargle, and otherwise imbibe four times a day so she can eat without pain. Notice I said cocktail, because I now have two boxes of Maalox and two boxes of benadryl taht I don't need because I am incapable of reading or following directions or labeling.

Well that about sums things up; I think. Oh wait, except for she  b b b bbb b bb b b bb bb b b bb b bb bbbb bb b bb b b b b bb bbb bb bb b  bbbbb bbb b bb bbbbb bbb b bbb b b bbb bb b b b b bbb b bb b b bb bb b b bb b bb bbbb bb b bb b b b b bb bbb bb bb b  bbbbb bbb b bb bbbbb bbb b bbb b b bbb bb b b b b bbb b bb b b bb bb b b bb b bb bbbb bb b bb b b b b bb bbb bb bb b  bbbbb bbb b bb bbbbb bbb b bbb b b bbb bb b b b b bbb b bb b b bb bb b b bb b bb bbbb bb b bb b b b b bb bbb bb bb b  bbbbb bbb b bb bbbbb bbb b bbb b b bbb bb b b b b bbb b bb b b bb bb b b bb b bb bbbb bb b bb b b b b bb bbb bb bb b  bbbbb bbb b bb bbbbb bbb b bbb b b bbb bb b

The great moult begins.

They told us that the third week she would begin to lose hair. Like clock work it arrives immediately following treatment this morning, the first session of the third week. She began to lose hair. It is falling out quicker than I expected. We thought it would be a clump here a and a clump there over the next few weeks but she has already lost a lot of little patches.

On a side note. Doesn't rotten luck just seem to come in groups. The other day my cousin burnt her hand pretty badly in a grease fire. I know that her and her family have followed my wife's progress pretty closely and kept us in their thoughts and prayers. I want Crystal and her family to know that she, and they, are in mine right now. If she really wanted to go down to the U though, she could have just come and visited us while we were there. She didn't have to find her own excuse (wink wink). But seriously I hope that you have a speedy and easy recovery and that it doesn't interfere with your collegiate plans too much.

Sunday

Our little boy turned two today. Happy birthday little man.

So where are we? We went to church briefly today. Which was nice, just because it felt normal. Katrina did okay with it.We got lots of well wishes from people, which we appreciate. They also announced a fundraiser that My mother-in-laws neighbor is putting on for us next Saturday.

I don't know what all it is going to entail but over the last couple of days I've gotten the idea that it is going to be quite the to-do. I have a hard time with it. Will we need the financial help? the bills have already started to come in and I don't know how we could handle them without other peoples kindness. But my pride gets in the way. I want to stand on my own two feet. I want us to "earn our bread by the sweat of our brows." At the same time you hear of medical bills and related expenses breaking people. It's a quandary I wrestle with daily. I feel awkward and embarrassed, although truly grateful, when someone slips us some money. I mean, some money that a neighbor gave us was what made it possible to buy groceries this month.  I also worry when I start thanking people, I know that I'll forget somebody, I also know that I don't even know the beginning of what people have done for us. So please If I fail to thank any of you please now that is isn't from lack of gratitude. It's more like from being overwhelmed by human kindness. I also worry that some people don't want to be thanked or named publicly. 

Sometimes, as I watch the news, or I see the way people treat each other in public I really question human kindness. It seems like we spend more time trying to kill each other than we do trying to care for one another. I get very jaded by the human condition and look at the world very cynically. I have had my eyes opened this last month or so to how many people really do care about other people. Thank you, thank you to everyone who has done anything to try to help us, from the smallest prayer to bigger acts of service. I truly do appreciate it. I know that there is no way we would have made it even this far if it hadn't been for many other people.    

1/3 of the way done.

Sorry about the delay. I have sat down several time to write this but something more pressing always comes up so I haven't been able to finish. 

Things are going good. She is starting to break out with "Zits" all along her spine and around the top of her head. The really do look like zits and just might be if her pours are plugging off with dead skin. I need to check with the good folks down at Huntsman because I'm afraid to treat them the same way we normally would (with some astringent) since her skin is already irritated.

Next week is the week where the doctor said we could expect to start seeing her hair fall out.  

Children

Katrina is still getting pretty frustrated with her progress. To make matters worse our  four year old daughter, who we call "H," has been telling Katrina that she is a different mommy, and that she talks bad. H doesn't mean anything by it in her mind she is just pointing things out and probably trying to figure out all this craziness by doing it. H was pretty devastated when Katrina started to cry and she realized she had hurt mommy's feelings.

So what about H's concerns. Is Katrina a different mommy? In some ways, quite frankly, yes. Most of them, I hope, are temporary. Like her inability to do much for and with the kids, and the way she sleeps most of the time. Does she "speak bad?" Well, not really. She speaks a little slower. She has a hard time adjusting her volume to compensate for any other noise. She also struggles to find the odd word her and there. But really it's not too bad.  If the only things she gets back are her balance and single vision back I think she could function pretty normally; say about 95% of where she used to be.  As it stands now I'd say she's about 85-88% of her pre-surgery normal.       

25% Done

We are a quarter of the way done with the initial (and hopefully only) round of radiation. Katrina is doing good, but she's super discouraged because she still isn't functioning at 100%. I try to tell her that she doesn't need to be but as per usual she's the boss so she doesn't need to listen to me.

Round Six

Things went good with radiation today. I find that as I'm getting familiar with the roads and the ins and outs of the construction that we can make pretty decent time.

We had a little bit of a scare with her body temperature tonight. She had a smoothie and then couldn't get warm. I shut off the AC and put her in bed under a pile of blankets and that brought her temperature back up although she was looking pretty pale.

August 1st 2010

I found out that my friend Chantry's mom, Irene, has thyroid cancer and my need radiation. I consider Irene to be like a second mother. Chantry and I were thick as thieves all through high school and Irene was the delivery nurse for both of my children. I also found out that Chantry's wife's uncle (uncle-in-law?) is terminal with another type of cancer.

My heart breaks. I hate cancer. I HATE cancer. The first time it broke my heart was in 1989 with the passing of my great grandmother. I was seven and I think it was really my first encounter with death that I could understand and remember. Since then an ever mounting list of people I know and care about have battled cancer. Some have lived, more than a few have not. In my mind I go over the list of people, some very very dear to me, who have passed on because this. It's easy to start asking why. The problem is there are no answers to, why. It just is. I like what Chantry had to say on his wife's blog about it:

The question "Why did this have to happen?" or "Why dose it have to be this way?" can be a haunting one. I think it's better to live life with the understanding that part of life is that stuff happens, even tough, hard, frustrating stuff. I prefer to not constantly ask 'why did this have to happen?', but to just move forward with the knowledge that no matter what happens, through the Lord, everything that happens to us, will be consecrated for our good, if we put ourselves in His hands.

I think that Katrina and I put on a good face as we battle this. But in the late hours, when the house is quiet, everyone else is in bed and there is no pressing thing to occupy my mind,  I find that the whys and the pain and the fatigue eat me alive. It really feels like I trying to row up stream. I've shouldered what I can and I have to lay the rest at the feet of the Lord. I cannot do this without his help.

Katrina struggled today. I try to keep my worries and fatigue from her but some days it just seems to eek out around the seams, despite my best effort. It hurts her to see me struggle. It makes her worry. I love her and i don't want her to suffer more because of my weakness. Lord grant me strength as we face another week.