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.

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.

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.

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. 

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.

 

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.   

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.

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.

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.  

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.

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. 

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.