Chemo Follow Up 12-28-2010

We had a follow up with the Chemo-therapist today. He showed us Katrina's MRI from last week side by side with the one from September. They looked almost identical. He said that given that he blood counts when pretty low during radiation she would probably do even worse with Chemo so, given that their hasn't been any change in the MRI, he doesn't see any benefit to risking that when it may not be needed. So for now we'll just watch some more.

MRI 12-21-2010

We had an MRI today and a follow up with the neurosurgeon. He said as far as he can tell it still looks clean and she seems to be progressing well.

On a separate note the drive down was kind of yucky this morning and I was glad when we got the the MRI place.

Friday Update 12-17-10

We went to a doctors appointment yesterday with the rehab doctor (Doctor Edgley). Her says that she appears to be doing good. She still has some balance issues but her youth has allowed her to compensate so that she isn't falling. He anticipates that, that will slowly correct itself because of her age. 

We also discussed her work with him and her wrote her a note that said she is ". . . cleared and encouraged to return to work full time."

Next week we have an MRI and a follow up with the nuerosurgeon to go over the scan.

Friday Update 12-10-10

Things continue to go well. We met with Katrina's Principal and Assistant Principal today. We identified some areas that they have seen improvement in and some areas she seems to be struggling in. We have some doctors appointments this coming week and we'll discuss those things and see what we can do. I think that just between the her and me we have developed a strategy to help adapt to some of the areas she is having trouble with.

Friday Update 12-3-10

Things continue to go about the same. I've spent the majority of the week sick (flu?). Now the Kiddos are sick but so far Katrina doesn't seem to be getting it.

A Relief

As the first of December edges closer and closer a point of stress that I have felt more and more keenly each day is the fact that we had not heard back about Katrina's disability pay. I had already swallowed my pride and met with my Bishop to tell him that we may be in need of some assistance come the first of December if we didn't get it straightened out.

We had been receiving a partial pay check from the the catastrophic leave fund that Katrina has been paying into. However, the first week of November we didn't receive any pay. We found out that her catastrophic leave was up and that long term disability was supposed to have taken over. Unbeknown to us there was some paper work that we were supposed to have filled out. I scraped the bottom of our charitable account and a few other places and managed to cobble together enough money to scrape by this month.

Today we received a check from her long term disability insurance for not just last month but for a few months back pay we didn't expect. It is a relief to me. We will be sitting good financially again this month and should be able to put a little bit back in savings for if things get tight again. Hopefully things continue to go well and she can return to work full time in January like she wants to. Then, if thing continue to go well, we should be on stable ground again.

Once again, I feel truly blessed. I know that the lord has helped us through what could have financially ruined us.  Thank you to everyone who have been the instruments of the lord in this.

Giving Thanks

What am I thankful for this thanksgiving?


As we listen to numbers and statistics about rates of survival and likely hood of relapse I am thankful for the time I have had to keep my wife these last few months. I firmly believe that I would have been a single father by now (or very soon) given the exponential way her symptoms were increasing. I am truly thankful to the lord for each day I get to have her here with me.

I am thankful for modern medicine. I enjoy history and sometimes fantasize about what it would have been like to live in a more simple time. A solitary log cabin by a stream in a wind swept valley with a garden and some livestock stirs a desire inside me that is almost painful when I look at the complicated way the world functions today. The problem with this fantasy is that Katrina would have died of  some unknown disease. She would have continued to waste away until her forth ventricle was completely blocked. Then, hydrocephalus would have killed her long before the cancer spread, and we would have had no idea why she had died.

I am thankful for the charity of others. The truly unexpected outpouring of love, prayers, money, and other things has been and amazing blessing to us. I distinctly remember multiple instances where other people have had medical problems and watching as this same outpouring fell on them and their families. I also distinctly remember grumbling privately about how if it was us we wouldn't be treated the same. It was due to a persons popularity, position, etc. that they received the charity that they did. I stand corrected and completely humbled. I realize now that those thoughts and feelings where a sin (envy? jealousy? pride?) and I regret them deeply.  

I am thankful for family and friends who have done everything they can (and probably more) to help us through this. I really don't know what we would have done if not for all the babysitting, meals, visits, love, prayers, etc. that have been provided to us.

I am thankful that Katrina has recovered as well has she has and I pray that she continues to do so. I really feel like my love for her is the strongest that it has ever been. This trial has been like the fire, hammer and anvil of the forge that tempered our relationship and increased its strength.

I am thankful for this trial. I feels odd to say that and given the choice I'd probably still chose avoid all we have been through and still have to face. The problem with that is the blessings, lessons, and strength we have received far surpass the trials. Our priorities as husband and wife, parents, and human beings have changed drastically in a way that only something like this could have done. 

Most of all I am thankful for a loving farther in heaven whom I know has carried me through this; who has given me strength that I never could have found on my own.

Frid. . .Err. . . Saturday update 11/20/2010

Things are still going well. We've had a bit of a hiccup with her disability Insurance but we are trying to get that straightened out.

She met with her Principal yesterday and they decided to shoot for returning to work full time in January.

Friday Update 11-12-10

I continue to be impressed by how well Katrina seems to be handling being back to work. I must confess that I was expecting her to just collapse energy wise when she got home. I was thinking that she would be going to bed at 6:00 or taking a nap as soon as she got home, but that is just not the case. We are settling into a routine that is similar to the one we had prior to June.

On a side note she got an i Pad at work today, and I guess the teachers at my school got them too. I'm envious, but not too much. It really felt like a giant i pod.

How'd it go?

So how did her first week of work go?

She says it went well and i didn't really see any signs of it taking a negative toll on her. I hope that this week goes as well for her.

On a separate note, I'm going to try to force myself to write at least every Friday. even if it is just to say that things are going good.   

Back to it.

Well, tommorrow Katrina and I start to get back into a work routine. I have seen the way she seems to be handling getting prepared and I must say that I have been impressed by how well together she seems to be about it. Maybe I just didn't have enough faith in her, maybe I just anticipate the worst too often. I think that as long as it doesn't wear her out she'll do great.

I'm more worried about my own job now. It has been nearly, if not, five months since I've been to work regularly. I'm worried about getting back into the swing of things. I guess it is just one more step in this whole process that I'm not anxious about.

It has been such a long journey, and sometimes it seems like It has been years rather than months. I know I feel that I have aged years rather than months and I don't feel like I'm even the same person as I was. This I know, I love my wife my love for her is the strongest it ever gas been. I love my children they have been a bright spot, a lighthouse in the dark and tumultuous sea at times. The time we spent away from them gas been hard. I am eternally thankful for all the love prayers and gifts we have received.I know that without the love and support of our heavenly father I would have long since collapsed under this burden.

Thank you all for what you have done for us. It's hard to tell at this point if we are leaving the woods behind or just entering a clearing before plunging back into the dark and vine strewn pathways of the forest. either way it is nice to enjoy a little bit of sunlight for a while. 

10-26 Doctor Visit Update.

They've pretty much decided to watch and see what the cancer does, instead of jumping into chemo. We have an MRI and followup scheduled next month. If the cancer doesn't come back it doesn't sound like they plan to do chemo. Also, Her white blood cells are back in normal range, although she did lose a little bit of weight. Things are going good. That is about the best we could have hoped for.

Nerves

As the first of November draws nearer I find myself looking  forward with trepidation. I'm worried about how she'll handle returning to work. I'm worried about how I'll handle returning to work. I'm worried about the doctors deciding to do chemo and setting us back. Our insurance allotted rehab appointments run out next week and I'm worried about how things will go. She has made leaps and bounds of progress thanks to rehab and soon we'll be on our own.

We have some Doctors appointments next week so unless something negative happens look for another post later next week.

Spinal Tap

Her spinal fluid did NOT have any cancer cells in it. Now we just have to hang in there, keep at therapy, and try to gain weight until we go back to meet with the chemo folks later this month to discuss what we are going to do.

Nothing New

I figure that I ought to post an update just in case anyone is wondering. No news so far. If we haven't heard anything we'll call on Wednesday to find out about the spinal tap. She is doing good. her hair is coming back slowly. She has been reading a lot lately which is a good thing as far as exercising her eyes. 

What We Learned

So what exactly did we find out today? Nothing. Okay, so that's not entirely true, but that is kind of what it feels like. So let me try to use my amazing psychic abilities to anticipate your questions.

Are they going to do chemo? Maybe, but not right now. Her immune system still hasn't recovered enough from radiation that they would even begin to feel comfortable assaulting her bone marrow with Chemo.

So, what are they doing? They took her blood to test her immune system as mentioned above. They also took some spinal fluid to see if there are any cancer cells floating around in there. She is just inside line between what they consider a serious case and a not-so-serious case on the not-so-serious case side.  They are also trying to decide what needs done because the vast majority of medulloblastoma tumors are in children so they are trying to "Extrapolate" aka guess what should be done in the case of an adult. There just aren't enough cases of adult medulloblastomas for there to be any conclusive steps to take in order to ensure the best chance for survival.  that leaves us with a benefit vs. harm question. If there are cancer cells floating around inside her fluid then we will need to move forward with chemo asap. If not, I don't know.

But, wasn't her scan clean? yes, but it only shows things that are visible. We don't know what is going on microscopically. Additionally the doctor said that these tumors have about a fifty percent chance of coming back within 10 years. Not only that but medulloblastomas will sometimes show back up in weird places outside the brain (liver, lungs, etc.) which is different from most brain tumors.    

We feel kind of "Yuck" about all of this, but it is just another mountain that we will have to surmount as best we can. Not what we had hoped, but not a surprise either.

Nervous

I'm super nervous this morning. In a little while we will head down to salt lake to discuss chemo. It feels more like we are going to sentencing hearing rather than a doctors appointment. Maybe I should where a suit and tie and contact a lawyer ;0P

But seriously, I'm afraid because if they decide to do chemo, especially if it's inpatient, it's going to feel like we are back to square one. She has made LOADS of progress in all areas since we finished up radiation and I'm terrified to have that all stripped away. Yuck!

Well here we go again for another adventure in this crazy journey.  

Facing the week ahead.

Well, this week we will meet with the chemo doctor. Katrina, desperately want to get back to work and her biggest worry about Chemo is that it will set the date for her return back.

Now that radiation has been over for a while she seems to be getting stronger all the time. Her stability is improving and the stubble that is coming in on her head is getting  to where it feels pretty prickly.  We've been kind of in a holding pattern since radiation ended. Regardless of the outcome of her appointments this week it will be nice to be moving in one direction or another.

Best News in Three Months

As Katrina mentioned in her post Her MRI scan came back clean. Not just good, but Completely Clean! The Doctor said the little bit of tumor that was left has melted away. We are thrilled! After three months of bad news and trials we got the best possible news we could hope for at this stage.

So, what remains to be done? She needs to work on getting her energy back up. Her balance continues to improve as well as her speech and cognitive ability. We meet with the Chemo Doctor on Wednesday of next week to see if they still want to do Chemo just as a precaution. For the next couple of years we will have quarterly scans and follow up appointments. Then those will slowly decrease in frequency until she survives the 10 year mark.

She is doing more things around the house and I'm starting to have to keep a pretty close eye on her to make sure she isn't doing too much. We've also been getting out and doing some Geocaching which we haven't done very much since she started school to get her masters. It has been a good way to get her out of the house and walking around a bit.  We also started H with her own geocaching account so that she can start keeping track of her own finds. She has tagged along with us since she was born, and she mostly just likes going to new parks, but I figure she's old enough now to understand what we are doing so she might as well have her own.

MRI

I had an MRI today. Dr. Schmidt said it was a clean scan. I hope it means no chemo!

This time of night

I hate this time of night. Mostly because of what happens. You see, this is the time when every thing falls away.I feel like an actor who suddenly finds himself alone on an empty stage in a dark and empty theater. The craziness of the production is over and he is very much alone and lost.

All the things that keep me rushing all day are over. The thing that was keeping my mind busy after everyone else is asleep is done and the loudness of the silence in our home seems oppressive in contrast to the madness of the day.

I find myself sitting face to face across the room from my worries and fears.They have waited patiently all day and before I rest they insist on reminding me who they are and what they represent. Tomorrow or the next day or the day after will I suddenly find myself facing the world alone? The truth is I don't remember how. Will our finances continue to work out like they have, or will next month be a mess. Are the kids doing okay. Am I doing the things I should to help them through. Is Katrina doing okay. She struggles with this emotionally a little more each day. Am I doing enough to help her.

They each wait their turn and say "hi I'm worry # 32 and I'm still here."

That's why I hate this time of night. My defenses falter and I find my weakness exposed. Alone in the empty theater before I lay myself down for a handful of hours sleep.

She did really well today. She ate quite a bit, relatively speaking.  Hopefully she can keep it up, but it seems to go in rounds.

Today was kind of crazy.

I suppose I should start with an update. Things went good today. Katrina ate and did well. She has even started trying to do some of the house work. Little things like rinsing dishes and changing diapers. I don't mind her helping more for her sake than mine. She is the type that just has to do things, and as long as she doesn't get to crazy with what she tries to take on it should be good therapy. With the potential for chemo coming up I'm afraid that all this progress maybe short lived. Kind of a tease before it's yanked away again.

I know she's super worried about chemo as well. She tears up any time someone mentions cancer and I think she trys to hide the signs that she has cancer when we are out in public. I tell her that her bald head is a badge of honor and that she has gone through a lot to earn it. I don't know if it makes her feel any better but I really think she should be proud of what she has done and the battles she has fought. She has done great.

It was kind of a crazy day today. This morning I discovered that the sewage clean out plug in our basement had become dislodged. So every time we drained the tub or flushed the toilet part of it was leaking out. I don't know how long it has been like that but I suspect it has been since just before or just after we got home from the hospital. I might not have caught it if I hadn't bathed this morning before I went down stairs. To make a long story short I ran to a couple of different plumbing stores modified some parts to build a plug that would work since the threads were rusted out and then cleaned up the mess. It took the better part of the morning. It also explains why I couldn't get the house to stop stinking. I don't know if anyone else noticed it but I sure did.

This afternoon we took the kiddos to the pediatrician for some minor things that we needed to get them in for but haven't been able to until now.  The doctor wanted a urine sample from our daughter "H" and she adamantly refused to give one so we got to bring stuff home to collect one. We hadn't been home ten minutes before we were running back to the doctors with a fresh urine sample.  Kids sometimes.  

Thursday

I'm going to write before Scott tells me to.

I have been eating better, but I think it is only the medicine. That is okay. I need all the food I can get. Last I weighed 95 lbs. My goal is to get over 100.

I want to go to bed now.

Wednesday

I have emptied all my e mail and now Scott wants me to write on the blog.

I meet with the chemo guy on the 28th of Sept. I really hope he says I don't need it, but I think he will say I need it.  I go for an MRI next Wed.  and meet with Dr. Schmidt. If he says I don't need chemo, then I may not get it.

I am trying to gain weight so I am not so skinny. I try to eat good. The WII Fit still says I am underweight, though. So I will eat more if I need.

Busy Busy Busy

It seems like we are so busy all the time. Just moving from one thing to the next.

So Her blood count has improved and although it is still bad hopefully we've turned a corner with it. Her appetite is still doing well too so hopefully she starts gaining weight. 

The university called today and set up an appointment for an MRI followed by one with Doctor Schmidt (our nuerosurgeon) next week.

harder to do this

It's getting harder and harder to remember to blog as the days have started to just kind of smudge together. She woke up at 3:30 this morning with some nausea and then promptly threw up after eating breakfast.  After that the rest of the day went pretty smoothly.

Now, I don't know if her appetite is improving or she is forcing herself to eat more, but she has been consuming more. And that is defiantly a good thing. When I laid down in bed the other night I put my hand on what I thought was her bony hip, it turned out to be her thigh. That should give an idea of just how skinny she is getting. Thighs just shouldn't be bony.

Things are going okay. Her balance was a little off today and we had a rough start with nausea, but she did pretty good in that department the rest of the day.

Lots of little meals.

I'm trying to get Katrina to eat lots of little meals as opposed to trying to eat three normal meals and then throwing up. It went pretty good yesterday. I'm also giving here a multi-vitamin which i cut in half and give her in the morning and at night. I'm wondering if some of the complications that we have seen over the last week have been from malnutrition. Hopefully this new plan of attack will conquer it.

On a separate note we don't have anything going today. It's weird not to have some sort of appointment or some other medical related thing to do on a week day.

An Agonizing Decision to Make

                 Last night was long and it caused me to reflect on how things are going. I realized that I haven't been and won't be able to give the after school program as much attention and devotion as I should. I also realized that I wouldn't be able to give my wife the attention and devotion that she deserves right now. Therefore, I put in for a family medical leave of absence today with the intent to return sometime in late October or the first of November if everything goes as planned.

                    It was an agonizing decision to make. but when it boiled down to three factors. First, I really feel like my inability to function at 100% has been holding the program back as it gets going this year. Second, I am concerned about what illnesses I might bring home to her with her compromised immune system ( I have had multiple loved ones battle cancers of all different sorts and in the end it has been the compromised immune system that killed them). Third, while I was waffling on what to do I asked Katrina what she wanted. Tearfully she told me that she wanted me here with her but that she didn't want me to miss work.  That cinched it, my priority has always been her so the second half didn't matter.  

Tales from the ER

Yesterday after Katrina woke up from her nap she was having a bit of trouble walking on her right leg. If she put any weight on it it just seemed to give out. Additionally her left Eye was dilated really big and didn't seem to be reacting well. After a quick call down to huntsman we were off to the ER. we spent the night there being discharged at 5:30 this morning. They never really figured it out, but her symptoms slowly got better. We discovered that she also had a bit of a fever which is another thing they told me last week I'd need to take her to the ER for that went up and then back down while we were there.

Like I said, we are home now and she seems to be doing pretty good. She even wants to go to rehab today so away we go for another adventure.

The End of Radiation

Well, we've done it. We have completed her course of radiation. Her blood work came back with a critical white cell count again today so the doctor wants us to get more done in a week. Fortunately, we only have to go to our regular doctor for that and not all the way to salt lake. She is still getting sick once in a while and
I hope that since she is done that will go away. It was kind of hard to say goodbye to all the ladies down there. 

So where do we go from here? Towards the end of the month we meet to discuss chemo. For now we get a little bit of a break. Although, I am anxious about what is going on inside her head. Is there any change? It's just one of those things where you just have to wait and see but I wish we knew whether the radiation worked or not.

Labor Day

She is still doing pretty good. She had a little episode of nausea at my parents barbecue and I think it embarrassed her more than anything. I keep telling her that they all understand, but she is still pretty upset about it.

As for me, I've taken up the game of golf. My mother-in-law is thoroughly convinced that this means I have finally snapped under the stress of all this. She has even gone so far as to recommend several fine sanitariums where she thinks I would fit in nicely. Okay, maybe she didn't "actually" recommend any hospitals for the insane but that doesn't mean that she doesn't want to. I'm not any good at it but it has been really nice to get out and do something just to get away.

Work starts for me tomorrow and I'm a little worried about that. I want to be able to take care of everything here and I don't know that I can be as functional there as I'd like to be. Still, I don't have much choice.

The last day of radiation therapy is tomorrow.

Better

She did loads better today. She ate a bunch for break fast; eggs, hash browns, and bacon. she even ate a few other time through out the day. All told, I think she ate more today than she has over any couple of days last week.

sick part V

Well she lost about 2.5 pounds which brought her down to 93.9lbs. Not as bad as it should have been, given the small amount she has eaten this week. The changed her meds up a little and hopefully that will help her start feeling better. Her white blood cell count is now in the "Critical range." which means a sprint to the emergency room for any fever, as well has extra careful hygiene and limiting visitors.

Sick part IV

things are not going good. I anticipate a big drop in weight tomorrow at weigh in.  She didn't eat hardly anything again today and what she did eat she threw up most of. I'm wondering if she isn't beginning to lose muscle mass. I escort her around by the arm and i noticed today that the muscle felt smaller than it used to. I don't know why she is getting sicker when she should be feeling better. We meet with the doctor tomorrow so hopefully we'll know more then. I'm scared.  

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.

Slowly

I continue to see little improvements everyday. Whether it's just getting down on the floor and playing with the kids more or not being as wobbly on her feet. We've had some excellent diet tips from family and friends who have been or are going through similar things. I'm hoping to show improvement on her weight next Thursday or Friday.

She really is facing this with the same determination that she tackles everything with. The only thing that is missing is a little bit of her old self confidence. But that stems from not being able to be as high functioning as she used to be and the fact that she has to rely on me more than she'd like to.

She is also doing better with visitors. My grandparents stopped by today and her friend from church stopped by yesterday. She did really good both times. We also went to her folks house for dinner and I didn't see much more fatigue than I usually do at the end of the day. 

On a side note; we had a great rain storm this afternoon. Rain is my favorite weather, especially these warm late summer thunder storms. Great stuff!

1 week of 6 done.

The first week of radiation is over. She has done really well and faced things bravely. We are looking forward to the next couple of days to just take a break from all of this. 

The Dave Matthews Band Conundrum

I have four tickets to an upcoming Dave Matthews Band concert. Some of you may recall that I was thrilled a few months ago when I got them because; not only do I REALLY like DMB, but they were FREE! Now I'm not sure what to do. I don't think Katrina will be able to handle it. Hmmm, maybe I'll bring it up to her again in the morning and see what she wants to do.   

Radiation 3 & 4 down 27 to go.

I'm so exhausted. How exhausted? I actually had to get a calculator to figure out what 31 minus 4 is. Yuck! I teach students more difficult stuff than that all the time but my brain just won't get going today. That should have not even required any thought on my part. I don't think I realized how tired I am until that happened.I also missed yesterday without realizing that I had.

So where are we? They will do blood work every Wednesday so she needs to drink lots of water on Tuesday so here veins are nice and plump and easy to suck blood from. They weighed her today and she only weighed just shy of 97 lbs. that is right where she has been but the doctor wants her putting on more weight or at the very least not to lose any more.

We had dinner at her folks on the way home from radiation which was nice. I thought she did really well, but she always seems to melt after we get home from something like that. Her energy level is just in the pits. I really need to get her to eat more. I also need to try to contact the rehab doctor at the hospital with some questions. I'm looking forward to the weekend and the break it brings from the commute to the hospital and back.    

--edit--  I forgot, I took down the calendar tab because they've changed appointment times on us a few times already and it's just too big of a hassle to keep up to date. And I added some haircut pictures to the picture tab.

Radiation 2 of 31

She was pretty nauseated today. when i went to fill her anti-nausea meds the other day the insurance would only authorize thirty pills since that is "A months worth." The folks at Huntsman where going to try to call in the prescription different or something in hopes that it would go through that way. They told me just to give one to here every eight hours and that we'd figure out what to do if the insurance doesn't okay it. Hopefully she'll feel better tomorrow.

Radiation Round 1

Oh No KAtRinA Has been irradiated!

Hey, radioactive ghouls are people too.

Okay maybe not quite that irradiated, but that's not the point. I keep trying to convince her that this is what she'll look like after all this is over but she isn't buying into it.

Joking aside now, she did really well; handled it like a pro. One down Thirty to go.

Outpatient Rehab?

Now that we're home the next and most vital step is of course the radiation to kill off the cancer. But, there is also the question of outpatient rehab. The doctor wrote us some "Prescriptions" so that we could seek some outpatient therapy.  They also had the therapists print out there notes and gave us a copy of her medical records to take with us to wherever we would find rehab. The other thing they did was give me lists of things that I can work with her at home on. I guess that it is really a question of what she feels like she needs to get to where she can accomplish her two goals; return to work and take care of her babies.

My concern is trying to tackle both radiation and therapy at the same time.  Does anyone have any experience with this? It seems to me she'll be pretty tired and sick form the radiation especially since they have to do her whole head and spine. I'd hate to push her or let her push herself too hard on top of all that.

7-24-10 Update

It's good to be home, although there is a lot to get caught up on having not been here for three weeks. Slowly but surely I'm chipping away at the mail/bills that came while we were gone along with unpacking and getting things safer for Katrina.

I have noticed since we have been home and people are coming by to visit that it wears Katrina out. It's a hard balance because she loves to see people. With that in mind, anyone who wants to is welcome to stop by and visit, however, please try to keep it short. 15 to 20 minutes is about all she can handle right now. Just give us a phone call before you come so that I can make sure she isn't sleeping (which she does and needs a lot of) or we have someplace we have to be.

If Tomorrow Never Comes

If Tomorrow  Never Comes
Garth Brooks and Kent Blazy

Sometimes late at night
I lie awake and watch her sleeping
She's lost in peaceful dreams
So I turn out the lights and lay there in the dark
And the thought crosses my mind
If I never wake up in the morning
Would she ever doubt the way I feel
About her in my heart

If tomorrow never comes
Will she know how much I loved her
Did I try in every way to show her every day
That she's my only one
if my time on earth were through
She must face this world without me
Is the love I gave her in the past
Gonna be enough to last
If tomorrow never comes

'Cause I've lost loved ones in my life
Who never knew how much I loved them
Now I live with the regret
That my true feelings for them never were revealed
So I made a promise to myself
To say each day how much she means to me
And avoid that circumstance
Where there's no second chance to tell her how I feel

If tomorrow never comes
Will she know how much I loved her
Did I try in every way to show her every day
That she's my only one
if my time on earth were through
She must face this world without me
Is the love I gave her in the past
Gonna be enough to last
If tomorrow never comes

So tell that someone that you love
Just what you're thinking of
If tomorrow never comes

Home at last

Home at last and it feels good.

7-22-10 update.

Less than 20 hours left!

Katrina was about in tears after the dry run over at huntsman today. We will have to be sure that she takes her sedative before she goes back for the real thing. We got her schedule for all her treatments going forward I'll try to post them all ASAP.

7-21-10 Update

Doctor Schmidt (our neurosurgeon) stopped by today. He seems to think that chemo won't be necessary, so hopefully he is right and we'll just need radiation. She is doing pretty good. They took her outside in
PT and she climbed a bunch of stairs and walked up and down hills so she is pretty tired this afternoon, but she did great. Her double vision was almost back together when she first got up and her speech was back to normal for a while.

Release Date Update

THE MORNING OF JULY 23!!!!!!!!!!!!!

7-20-10 Update

Katrina continues to progress. She got in trouble yesterday because while ran home she decided to walk around the gym by herself. The Rehab people didn't think that this was the best idea.

She has a little bit of, for lack of a better term, ADD. Her mind will go off on tangents. For example she was supposed to name things that fit in a category. One of the items she named was a computer key. She then sat there quietly for a minute before she started telling us a story about how somebody lost a the letter "G."

Today is the day they meet to discuss release dates. Cross your fingers.  

7-18-10 Morning Update

July 25th, that's the date that Doctor Edgley said he'd be willing to discharge us early. Kind of a bummer because we were hoping for the 23rd so we could spend the holiday weekend with family and kind of make up for the missed independence day stuff. Oh Well, Seven to go. One at a time.

after surgery

I fee' 'ike  a  lottle kid. O
I1 can thihnk better than I cna wspeakl.  I ame ke  a lot pf mistakes. Scott  will edit this aftter
a  write it..  I hit enter we=hen I try to0 captielize.


Translation by Scott:
"I Like Big Butts and I cannot lie. . . . " Oh Wait that can't be right. Ah, I see now: "I feel like a little kid. I can think better than I can speak. Scott will edit this after I write it. I hit enter when I try to capitalize. Scott is Awesome and he should be king of the whole world. Scott is the best most great person in the whole history of awesomeness. I am going to give Scott lots of money when I get out of here. " Dang she caught me; she said, "You are typing a lot more than I did."

Photo Album

I added a photo album tab at the top. Please Ladies, I know my new hair style is super sexy, but I am a married man after all.

7-17-10 Morning Update

The 17th! Wow! Have we really been here half a month. It seems to drag by so slowly as it happens and yet here we are only a week or so away from discharge. We also ran into Katrina's Second Cousin, Sean, in the hall today. We had no idea that he worked here.

 I feel like a lot of the time I just post things like "We're good," or Lame updates like that. They keep us pretty busy during the daytime on weekdays and by the time we get done I don't really feel like writing much. So how are things with us exactly? 

I really feel like things are going pretty good. I've seen a lot of progress I really feel like she would be safe to go home any day now. Most of the problems that I think she is still having stem from the double vision which will take time to heal as her brain does. As that slowly gets better I really expect her coordination and such to return to normal given the progress that we have seen already.

She really is doing great considering what she has been through. Part of that is the great people here who work with her. I think that a bigger part is the love support and prayers of all the people who love her coupled with the divine intervention of the Lord.

I truly do feel like we have been blessed despite the trials that we are facing. As I reflect on the original MRI I don't think she would have survived the remainder of the year if we hadn't discovered the tumor. By the time things got bad enough here ventricle might have been closed off leading to death within a couple of hours or the cancer may have spread. Then from there things have just kind of worked out every step of the way. There is just no way that all the little things that have fallen into place beginning even months before we knew could be anything but divine help.
  

7-16-10 morning update.

Things are going pretty good this morning. Katrina did really well in physical therapy this morning. I'm impressed by how much better she seems to do everyday. She come so far from the lady who could only lay in bed and cry unable to speak that she was right after surgery.

I talked to Doctors Edgley and Barnes this morning about discharging her on the 23rd instead of the 27th. Doctor Edgley seemed to think that might be okay, but said he'd have to discuss it with the rest of the rehab team.

I feel bad.

I feel bad about the rant I went on this morning. I've got to remember that for the most part these nurses really are trying to do their best and that they are in a tough position between the doctors and the patients sometimes. We've never been treated badly by anyone down here. I've got to remember that not every nurse has talked to us and already knows our needs. A lot can get missed at shift change. That is why I am here, to be an advocate for my wife, and I need to do it with patience. Things worked out in the end. I've always been a "Let's dive in and fix the problem now" type of person and all the waiting and slow progress of things kills me sometimes.

7-15-10 Evening Update

On July 22 we'll have a dry run on the radiation. They'll take Katrina in get her on the table and run through the process without actually using any radiation to make sure they have everything set and safe for the real thing. Beginning the 26th she'll receive radiation treatments every week day for 31 sessions. Also my wife now has tattoos. She has small black dots several places on here body. If you didn't know they were tattoos you'd never even notice them. I'm going to try to convince the doctors to move up here release date to July 23rd. That will give us the weekend to make up for the 4th and get ready for the radiation to begin. 

7-15-10 Morning Update

I'm getting frustrated bordering on anger this morning.
I don't know what her schedule will be today. Huntsman and Rehab seem to be fighting over her. I keep telling them that she has an appointment at Huntsman at 10:45 but they just keep saying that they haven't heard anything about it. I called Huntsman and they said that they'd call and get it taken care of. It's a little frustrating. The Rehab Doctor is trying to push stimulants on her even though we keep telling them that they mess with her heart. They just don't want to hear it.  The nurses last night made a big deal about her blood pressure, paging doctors, taking it over and over and over and over again, etc. They wouldn't listen to me when I tried to tell them that it is the same as it always is when they wake her up to take it. There is just a whole lot of dismissal of what we say that goes on down here. RAWR! Oh the other thing is, they keep giving her ranitidine. I keep telling them that she doens't need it because it was prescribed to cushion her stomache against the dexamethasone which she hasn't been taking for days now.  What do we know though we're just the patient. We're just here 24 hours a day, while they change every few hours.

So my final thoughts: I'd rather have a living wife who went to radiation but can't walk as good as she used to, than a dead wife who didn't get radiation because learning to walk well is such an important skill for a corpse to have. At 10:30 I'm taking her to huntsman whether they like it or not, what are they going to do kick us out? We gotta get out of this place.

7-14-10 Night Update

We met with the people at Huntsman Cancer today. She'll need to undergo six weeks of radiation. The first four weeks will be of the spine and the whole brain in order to try to ensure that it doesn't spread. The last two weeks will target the tumor areas only. She was sad about the fact the she will lose all of her hair; especially after the way the cut her hair and head was such that she could cover it up just by wearing her hair down. Needless to say I am sporting a new hairdo, or lack there of, tonight. The radiation treatments should start the middle of next week sometime.

7-14-10 Morning Update

We slept pretty good last night. The pretty much leave us alone at night as long as she seems to be sleeping well when they poke their heads in, which is a nice change from being woke up every couple of hours.

Calendar

I have added a calendar tab above at the top of the posts. I'll post her schedule there everyday.

7-13-10 afternoon update: Projected discharge.

Our anticipated discharge date is July 27th. It's not what we'd hoped for but kind of what we had expected. 2 weeks more.

7-13-10 Schedule and Update

815-900 OT
945-1030 OT
1300-1345 ST
1430-1515 PT
1600-1645 PT

Thinks are going pretty good this morning. I think her speech is a little louder and more clear than it has been. She also seems to be turning her head more than she has been. They meet today to discuss and set her projected discharge date.

7-12-10 Noon Update

We  did a lot of work this morning, working out and baking cookies. Our insurance said they'd only cover 20 sessions of each type of therapy. I think Katrina would really like to go home Friday so maybe that would work anyway. We met Katrina's Co-worker's husband Danny today. He works here in Rehab and it's nice to know somebody here. I feel super rushed which is kind of a nice change after what feels like an eternity of sitting and doing nothing.

7-12-10 Morning update and schedule

She has been running a bit of a fever. She was at 99 at about 12:30 last night. They are watching that. She also told them she doesn't want Loratab she just wants Tylenol so we'll see how that goes.

Schedule

900-945 Physical Therapy (PT)
945-1030 Assesment
1030-1115 Speech Therapy (ST)
1115-1200 Occupational Therapy (OT)
1345-1430 OT
1515-1600 PT

Momentum

I've had a few people tell me how strong we are or how they are impressed with how we are handling this. I guess maybe I've been misrepresenting how this is going.  It's not a pretty scene down here in the mud and blood like it might come across on this blog. It's a battle more mentally and spiritually taxing than anything I think we've ever faced together. It's hard, it sucks, I hate it, and I want it all to go away. Katrina and I have butted heads more times in the last few days than we probably have in the last couple of years. She is as stubborn, bull headed, and fiercely independent as ever she was. I cry, I pray, I hope, and I worry. It's a fight everyday to face another round of uncertainty. Don't look at us as some sort of "I don't know if I could handle it like they are" example.  It's not really a matter of choice. What else can we do? It reminds me of one of my favorite quotes, one that I've turned to to help me get through a few struggles in my adult life that are brought on by things over which I have no control:

‘I wish it need not have happened in my time,’ said Frodo. ― ‘So do I,’ said Gandalf, ‘and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us.’ ― ‘The Lord of the Rings’, Book I, Chapter 2.

 If you could sit where I sit and feel what I feel you would know it's nothing so admirable as it may appear. It's just a grim determination to carry forward. 

If you want an example to follow look to the one I have. From the day we found out about Katrina's tumor I have watched and thought about what I know of one man. A man who is so humble that the very fact that I admire him for the way he has stood by his wife that it might embarrass him. His name is Pete MacFarlane. I knew, as I thought about all the possible outcomes of this surgery, that If I could be even a quarter of the man  for Katrina that Pete has been to his dear wife Nancy then things would be okay. He has stood by her through so much, most of which I only have the fainest inkling. Yet he has still fulfilled; No, I would say magnified, every calling I've seen him take on. He always has a smile and a firm handshake. He always wants to know how my family is, and he genuinely cares when he asks. He always wants to serve. I can see the way he truly, deeply  loves his wife in the way he serves her and yet still serves wherever else he can. I have known other, lesser men who have abandoned their wives when their health became less than convenient. I chose to be like Pete. I chose to honor my covenant with my wife regardless of the outcome of this trial we are facing. Look to Pete as an example, not me. 

I'm just Scott, weary, tired and broken. I continue my march because I made a choice to try to be like Pete, and now it takes less effort to keep marching than to stop my forward momentum and lay down to die. There is no strength here, just a choice, followed by forward momentum.           

7-11-10 Morning Update

All things considered we had a pretty good night. They only woke us up a couple of times to check her vitals and she went twelve hours without pain meds. I don't get any phone reception down here in rehab so I'll have to wander back up to the third floor to try to make some phone calls.

7-10-10 Night Update

First of all let me warn you that I'm doing this post on my iPod while I wait for my sleeping pills to kick in. So, if for some reason I start making gross gramatical errors or just plain no sense at all you will know why.

Also, I was trying to moderate comments and I hit publish but blogger threw an error. I tried it a couple more times then it came up and said "comments rejected." please don't be offended if yours was one of them. I did read and appreciate them.

We are now in our own room and I think (cross my fingers) that all the transfer hiccups have been sorted out. We were getting pretty discouraged with how things went, but they are looking up now. They have also adjusted her diet to stuff that is a little softer like pasta and whatnot.

Katrina got to see our kids which was really good for all of us. That's been the one of hardest parts for both of us; the being away from the kids.

We are planning on trying to hit church service here tomorrow. I must admit that 30 minute church in my street clothes sounds like a great idea to me.

7-10-10 Afternoon Update

Things are going okay. Katrina hates rehab and that all they do is stupid stuff.  Frankly, from what I've seen so far I'm a little inclined to agree. Cognitive tests that I'd screw up on and stretching make me wonder why we can't do that at home for free. Still at least they told us they'd be giving us our own room today so that might help things feel a little less frustrating. The level of care we receive here is definitely not the same. They didn't serve her dinner last night or breakfast this morning. I wasn't here due to the room situation but my mother-in-law went down and fixed that.  Don't get me wrong the people who have worked with her here seem to be every bit as great as upstairs, but there just seems to be something broken or not quite working right down here. Something behind the scenes.

On the bright side; our kids will be here in about an hour and I know that Katrina is looking forward to seeing her babies. 

7/9/10 Night Update

Well after much waiting today they finally moved us down to rehab. There big thing is that she is off balance and slurring her speech. If I was doped up on that much narcotic I'd be off balance and slurring my speech. too. Hopefully as they take her off it most of her functionality returns. Then we can face the Radiation.

Yuck! When I think of radiation I always think of This Movie. Not a pleasant image if you've ever seen it. I know it won't be like the movie, but that is the image "radiation" always brings to mind. It was a good movie though.

The bad news is they stuck her in a room with another lady. That means I'm not allowed to stay with her at night if she wants me to. They promised they'd try to get her in a private room some time this weekend.

Come on Katrina. You've been my strength for so long now and yet not long enough. I know that you have it in you to beat the living daylights out of this rehab thing. And then to take the radiation in stride. I'm rooting for you.

Time Line

I published a Page detailing the time line of Katrina's Tumor to see it click the time line tab above the blog posts.

Domain Finished

Okay, the new domain should be working, along with comments and all the other stuff. Also Katrinatumor.blogspot.com should be automatically redirecting to KatrinasTumor.net

7/9/10 Morning Update

They told us that they are not going to go back in after the last little bit of tumor. So, they'll move us to rehab sometime today. Also, they have been talking about taking out Katrina's staples today.

Katrina was terrified last night about the potential for having another surgery in the next couple of days. So this morning's news comes as a relief to both of us. If felt like we were going to hit the reset button and need to redo this whole last week.

Pardon Our Dust.

Sorry, I know that a lot of things (including comments) aren't working due to the transition to the new address. 404 errors galore around here. If you can't get somewhere you want to go try replacing the "www.katrinastumor.net" part in the address bar with "www.katrinatumor.blogspot.com" The Transition is an automated process. Hopefully it is complete sometime tonight or tomorrow.

Bad News

Her tumor is not benign. It is a (Medulloblastoma?) Blastoma. The MRI also showed a small area of tumor about the size of a pencil eraser that is still there. In adults, this type of tumor has about a 70% 10 year survival rate when treated aggressively with radiation and chemotherapy.

Today the "Tumor Board" here at the will look at whether the amount of tumor left would be better treated with the radiation (that she has to do anyway) or with another surgery. They should make a decision today.  

If they decide to do another surgery we will remain here. Then in the next few days before the brain and skull heal they'll go back in again so that it will be a lot quicker and a more easy surgery since all the pathways are still relatively open.

If they decide to leave it in and just treat with radiation they will move us down to Rehab tomorrow so that she can get functioning enough to begin the radiation and maybe chemo as soon as possible.

7-8-10 Morning Update

Things have gone pretty good. She spent most of the morning sitting in a chair or walking. The doctors came by and said that she could probably get her staples out sometime in the next two or three days. Just waiting on pathology, still.

So far I think we have been pretty lucky as far has having a brain tumor goes. I think that it has more to do with faith and prayer than it does luck though. Thank you again to all of you who have prayed on our behalf. So often we go about our daily lives and feel so Isolated; like if we fell only a few would take notice. It has been amazing to me to see the outpouring of love and concern  from all directions.

7-7-10 Night Update

We were hoping to be moved to physical rehab today but the pathology on her tumor did not come back as the Doctors had expected. Doctor Schmidt is reluctant to release her from here until he has it back. I can only assume that  this is because he may wish to pursue some other avenue of treatment depending on the results.
Still we should be moved sometime tomorrow.

She makes me laugh with the stuff she believes has happened while she is high on her medications. For example, she currently insists that My brother-in-law's wife, Kate, was admitted to the hospital here and is hiding from her in the next room. I told her we could call Kate and ask her about it, but she just said that Kate would lie and say she wasn't here. 

 I'm missing my children something fierce. one of the advantages to being moved to rehab is that they should be able to come visit. 

7-7-10 Morning Update

Katrina did pretty good through the night. I spoke with the doctors about the hallucinations she has been having they told me that it could be a result of the narcotics they've had her on and that as they back her off them they'll keep an eye on it and work it up if they need to. That was a major relief to me, I was worried that it would be permanent. I don't know quite how to deal with it. Do I just let her have her fantasies or do I try to anchor her to reality by telling her what has and hasn't happened? Some of the stuff she says is pretty funny and one day I'll have to give her a hard time about it. The same way she gives me a hard time about jabbering on and on about macaroni and cheese and mashed potatoes when I came out of having my wisdom teeth removed.

She always has a hard time in the mornings. She begs me not to leave her. I have to re assure her that I'm not going anywhere and that I'll stay with her as long as she wants me to. 

Post By Katrina as Dictated to Scott

 I like people to come visit me. They have me on light sedatives to make me sleep but not to be in a coma. I've been very sleepy and tired since the surgery.

7-6-10 Afternoon Update

There has been some talk of discharging her. Nothing concrete just a hint of it on the wind. Rehabilitation came in today and said they thought it would be a good idea for her to come to them for in patient rehab after she is released. I'm really kind of torn. She seems to do pretty good with stuff if you ask me, I mean given that her brain was just sliced open and fondled for twelve hours just four days ago.  Also, she isn't doing very good here. It's a lot noisier in this wing of the hospital and the lady next door is very combative about EVERYTHING, which just creates more noise. All they are really doing now is giving Katrina pain pills. She's not hooked up to anything. Just laying in bed and taking pain pills. I can't get a straight answer from her about what she wants to do other than she doesn't want to sleep her because of the lady next door and the helicopters.

I just worry about getting her home and something happening. The nurse or somebody should be in shortly and then hopefully we can talk to them about it.



Edit: 6:04

We just spoke with one of the doctors. They are talking about moving her to rehab tomorrow. I'm kind of bummed because I was hoping she wouldn't need it. That's okay though. I need to check with the insurance to see what they'll cover with regards to that.

I'm tired of the hospital.  

7-6-10 Morning Update

She was pretty upset when we got here this morning. She is also pretty loopy, meaning she has had lots of "Visitors;"  People who I know haven't been down to see her. I get the impression that she didn't sleep well last night and that she is having trouble telling the difference between her dreams and reality. 

I also forgot to mention that she got moved to a new room last night. she is now in Nuero-Acute Care. She still can't really receive visitors though.

New Domain

Hi all. Just a quick blurb. I'm transitioning the blog here to www.KatrinasTumor.net our own Domain! You'll still be able to access it via katrinatumor.blogspot.com but hopefully this will give us an easier way for people to remember and share the Address.

It may take up to three days for the transition to be complete I'll let you know when it is.

7-5-10 Night Time Update.

Things went really well today. She Is off the pain med, both the local one that went straight into her head and the one the went into her wrist.

One of the doctors came in today and said that she is way ahead of the curve as far as her recovery. He said that is really good given that they don't normally operate on these types of tumors if it can be avoided because of the difficulties related to getting to the tumor and recovering afterward.

He was concerned about the amount of food she is eating. She should be eating more I'll try to push her in that department tomorrow.

7-5-10 Morning Update

HAPPY ANNIVERSARY WIFE!
Nine Wonderful Years Today!

Katrina, was pretty upset this morning. Several years ago our dog, Biggs, died on the third day after he had surgery. She is afraid that she is going to die today. Apart from that I think she is doing really well. Here pupils have been really small ever since surgery, but today they are dilating like they should. Also, it looks like a lot of the swelling has gone down. Her speech is easier to understand today too.  

We did a video conference with the kids which I think helped the kids and Katrina a lot.
The kids thought her Eye patch was cool so the nurse gave us two more for them.

7-4-10 Afternoon Update Part II

Physical Therapy just came and she walked from here room to the end of the hall and back. I think that the nurse listed it as 150 feet! She did great and I'm super proud of her. She was still unsteady but I think that it was pretty impressive for just two days after surgery. Way to go wife!

7-4-10 Afternoon Update

Still more of the same. she is eating a lot better than she was though. It's still not very much food but more than she was able to eat yesterday. She got mad at me for pushing the nurse call button over and over again, which I found kind of funny since I wasn't. Anyway that gave me a good laugh. Now that I think about it that might not have been as funny as it seemed. maybe I'm going crazy from sitting here so long.

Anyway, they told her they would help her take a shower if she wanted to later and we hope to skype the children later since they can't come see her while she is in the NCCU.

7-4-10 Morning Update

She seems like she is doing about the same as yesterday. They say she slept through the night pretty good. She seems pretty run down though. Maybe she tried too hard yesterday.

7/3/10 Night Update

All things considered it has been a good day. I'm Super happy that I got to spend one more day of this life with my wife in a semi coherent state. She was having trouble sticking to a time line today. What I mean is that although today was always the 3rd of July to her she would skip around what time it was in her mind. For example she would wonder why things that were supposed to happen in the future hadn't happened yet or talk about things that happened in the morning like thy had just happened.

For some reason she also convinced herself that they had taken out her tube for the pain medication and she couldn't have anymore. I showed her the button they gave her so she could administer her own pain drugs and she told me that it wasn't connected anymore. I assured her that it was and told her to push the button. She pushed it and within about 15 minutes she was asleep. I just feel bad that for four or five hours she suffered without anyone knowing it because she thought she couldn't have any more. She woke up and told me goodbye for the night and I hope she went right back to sleep.

It is hard for me to come home at night, but we had already discussed it before surgery and she has reassured me a couple of times since the surgery that this is what she wants; at least for now. I also need to remember that if I don't at least try to take care of myself then I won't be any good to either one of us. It is nice to come home and see my kids, read to them, and kiss them goodnight. A big thanks to my parents for watching them for me so I can spend as much time with Katrina as possible.

July 3 Afternoon Update

The doctor came in and spoke with her for a moment. Her said that the MRI they took this morning looks good and that she is doing better than most people.

I think she is getting frustrated with me though. I don't know why. I have to remind myself that she is on loads of drugs right now.


She's talking and doing really well  given what she went through. The doctor says she needs to just rest for a few days, I say me too.

7-3-10 Morning Update

She is doing WAY better than last night. She's talking and trying to look around. I'm super encouraged. I wouldn't say that she is night and day compared to last night, but maybe night and dawn. Physical therapy is here working with her right now. They have her sitting up and she seems to be doing pretty good with all the things she is being asked to do.

Last night and this morning.

It was hard to see her last night. She was obviously in a lot of pain. She can't really control her eyes yet and she couldn't speak. Both are side effects we were warned about and are supposed to be temporary. I wanted so much to take her place and remove this struggle from her.

While she is in nuero critical care(NCC) I can't really stay with her at night so I came home to get some sleep after the looooong day yesterday. I called the nurse and he said that she had a good night and that her abilty to move her eyes had improved slightly.

7:50 Update

Katrina is out of surgery. The Tumor was very vascular so it bled quite a bit which slowed the surgery down. We'll get the pathology report Wednesday to find out what kind of tumor it is and where we go from here. She is already awake and responding to simple commands. The breathing tube is out and they don't think they'll need to put her in a coma. All in all the prognosis sounds really good. It has been a long day and I can't wait to see my wife. We should be able to go see her in half an hour to an hour.

Thank you to everyone all over who has held a vigil with us today. It has meant a lot to log in and see the constant flow of comments from all over the world showing support for us.

7:15 update

They are closing right now. Then they'll move her to Neuro Critical Care and come talk to us.

4:30 update

Katrina is still in surgery.They are disecting the tumor and looking at it under the microscope. We should know more againg in an hour and a half to two hours.

2:30 update

I just spoke with Georgia(our nurse). Katrina's vitals are good. See is doing great. And they will update me again in two hours if they are still going.

12:30 update

Everything is still going well.

Hopefully we are about half done.

Update 11:00

I went for a walk after I posted the last update and ran into her anesthesiologist. He told me that they had just finished putting the drain in hear head so they coul monitor her brain fluids and that they where just about to jump into the heart of the surgery. He said she was doing Good.

10:40 update

Things are going good so far. They said they'd let me know more in an hour and a half to two hours.

News Coverage

I don't really know how to feel about it but, The Standard Examiner ran a story on my wife and her tumor today. To me we are just two people like any others. I don't know that our story is any more special than that of the  family across the room. I mean as I sit here in the waiting room and look around, I see a room full of people all of whom are anxious for some loved on. All around me are bleary eyed, worried people. We are just Scott and Katrina, two more in a sea of turmoil.

Thank you all for the love and support you have shown.  It has already been far more than I expected. Truly I had no idea the number of people who would care for/about us.

Away we go.

Well, she's had her MRI and they have wheeled her away. They said it would be about an hour of prep work then they would start the surgery. They also said they would try to update us every two hours.

T minus 9 hours.

In just under 9 hours we should be at the hospital for the main event. If ever you have felt like praying for us, now is the time. For those that have been praying already, we thank you.

Also, a big thank you to Lincoln elementary for the touching display of love that you showed us today. The thousand crains were a wonderful and fitting gesture. You have each done so much for us and offered still more. Thank you a million times over. Thank you, thank you.

I will try to post every piece of news I can no matter how small as it comes tommorrow, so stay tuned. Here we go.

Thursday Night

I should be sleeping, but I just don't want to do it. I am supposed to check in at 6:00 a.m. Which means we have to be on the road driving at 5 a.m. I then fill out my paper work and go get my surgery MRI done. After that it is surgery! I don't feel nervous. I will be asleep, so I will be fine. Hopefully, everyone else is fine, too.

"RE: Katrina's Religious Views" or "Why I Agree."

            Let me preface this. Religion is not something I'm very comfortable discussing openly with more than a select few people. Everyone has differing opinions on what is and isn't true as well as what things do and do not mean. I think that religion is and should be a highly personal thing and apart from the basic doctrines of the gospel so should the application. In defense of this view I point out that the lord gives us only a handful of commandments and lots of guidelines. I also hate feeling like I'm preaching or being preached to. My relationship with god is personal. That said I can jump into my response.

           Can God Remove Katrina's Tumor? YES, he is God for crying out loud. Will he? Probably not. The question then becomes why.

            I have always viewed God as a loving father rather than a mysterious entity who commands me from on high, and takes little notice of me other than to see if I do, or don't follow him. The role of Father is one I better understand now that I have children of my own. This view of him as a father, has allowed me to lean on him like I would my own father at times like this when I need help. So let's relate what I know about fatherhood to God and Katrina's situation.

            I have two examples that I want to put out there. First, there are times when my children do things that I know are dangerous and will cause them pain. If I always remove the potential for harm they will continue to find i,t and flirt with the danger. So there are times when, if their life and long term well being are not at risk, I let them hurt themselves. Now, that is not to say that I sit idly by and watch. I warn them, "Don't play with that you'll hurt yourself." however, I don't prevent them from making that choice. They learn better and more thoroughly to trust me and to stay away from the things I tell them to leave alone if I let them discover  it on there own. I think that, this is a good example of how God works with us.

           Now the second example, and the one I feel applies most here. When I watch my children struggle with something; a toy, how to do something etc., my instinct is to jump in and save them the frustration by doing it for them.  However, if I do that they will not learn from the experience and they won't grow from figuring it out. Now if they ask me for help should I just do it for them because they asked? It's more effective to give them a nudge in the right direction and see what they can do. It builds their confidence and makes them stronger.

            Now, given that I view God as a Father figure let's apply the second example to our current situation. If we don't ask for help I don't think God will intervene. I reference this picture which is based on Revelation 3: 20.

         Here we see Jesus knocking at a door without a handle on the the outside. He wants to come in and help but we must take the first step and open the door.  Most times God will not intervene where we do not ask him to. So if we ask for help does God just remove the obstacle we face? Most of the time he does not. Jesus prayed in Gethsemane " Father, if thou be willing remove this cup from me," and yet we know that he did not. Do we suppose that our trials are greater than those that Jesus faced? The Lord will help us face those things that we need to face if we ask. He can guide us, he can guide the hand of the surgeon or call to his mind some method that will help the most. By helping instead of removing the Lord helps us to grow in faith and strength.  Like a loving father God allows us to scrape our knees, and to struggle with problems so that we may grow. All things shall be for our good. God knows the end from the beginning, where as we can only see this moment, this life that is only a blink in eternity. What more could I ask for than strength to face this, comfort with whatever the outcome may be, and that if the lord is willing, he preserve my wife?