Month: February 2007

  • An Uber-eerie resemblance

    So, Ciera put these two pictures on her MySpace.  This one of me at 21, holding her:

    CieraEvie2

    So, she put on red lipstick and tucked her hair up to look shorter.  The caption under this on My Space is "No, that's my mom in the 90's."

    CieraEvie

    Isn't that one of the scariest things you've ever seen?!?!?!?!

    Now, I think she's far prettier than I could ever dream of being, but she really does look like me!


    So, my new pillows came that would allow me to move back to the bedroom.  But there's a catch.  Paul is a light sleeper.  And he doesn't want the pump in there until we figure out a way to quiet it some  It makes a squeeky noise every 6 seconds as it pumps.  He says that he either needs a louder fan, or he needs to spend some time figureing out how to muffle the sound of the pump.

    I've gotten used to it, but I understand his point.  So, for his Valentine's day gift, I will spend one more night in the easy chair.  Goober-man.

    OK, meds are kicking in... I'm off to sleep.

  • Graduation Day pt. 2

    Well, radiation therapy is OVER!!!!!  OVER OVER OVER OVER OVER!!!!!

    The radiation itself can work for up to 8 more weeks, so keep praying over those x-rays.  But I don't have to go in every day.  WOOHOO!!!

    We had quite the party to celebrate, too.  Since Ms. Pumpin-Stuff is now portable, I made a yellow cake (from a mix) and put chocolate icing on it.  Paul and Stephanie BOTH wanted to take me to treatment, so we all went.

    When my treatment was over, we broke out the cake.  All of the docs and nurses and techs and patients had some, including my 84 y.o. buddy, Chuck, who also graduated yesterday.  Poor Chuck was having a real "chemo brain" day, so he kept asking why we were having cake.  Bless his heart.  I made it primarily for HIM, but he didn't remember that it was his graduation day.

    Stephanie does hula, and is leaving on Friday for a convention.  She had a new dance to "The Prayer" (with the foreign language being Hawaiian... it was SO COOL!), and I hadn't seen it.  So, she did it in the waiting room.  It was beautiful, and everyone was eating cake and stopped to watch her.  They were so happy to have food AND entertainment.  Even Dr. P stoppped to watch. He also told me that my cake was wonderful.

    They gave me a new big water mug that looks just like the ones you get in the hospital (the one I've been lugging around everywhere), but it has a purple lid and says "Penrose Cancer Center" on it.

    Hugs all around, and we left.  I promised to come back down to see them when I come in to see Dr. H.  That team went through hell with me, so it was a bit hard to say good-bye.  But the fact that this part of treatment is over made it all worth it.

    They told me that THIS week will actually be the worst for fatigue, but that starting next week, I should start feeling like myself again.  Which will be wonderful.  Dr. H is going to give me a month-ish to get stronger before we go into full-dose chemo.  So, with the exception of Ms. Pumpin-Stuff, and the thinning hair, I'm pretty much a normal person.  The radiation burns will start to go away, so once my burns fade, I'll even look normal.  Just skinny.

    I'm really ready for food to start sounding good again.  I didn't even eat any of my cake.  I know that the feeding tube and Ms. Pumpin-Stuff are keeping me fed.  And I also know that Dr. H wants the tube to stay in place until I'm done with chemo.  But it would just be nice to do things like eat with my family.  I even made dinner last night since Ciera and Paul had a meeting, and Mimi was sick.  But I didn't want to eat it.  It's just wierd.

    Oh well.  This was a happy post. No more complaining. Radiation is done!  YAY!!!


    Ciera made the spring play.  She is so excited.  They're doing Pygmalion, and she's in the ensemble, but she does have speaking lines.  According to her, she has the biggest part in the ensemble.  It's a good place to start. 

    She came home from tryouts very frustrated with the way the theater teacher ran them.  She said that she didn't have a chance based on the way he was running things.  I've not seen her that frustrated in a long time.  So Paul suggested that she go talk to the theater teacher.  I never in a million years thought she would, but she DID!  And evidently, it made a difference.  I'm very proud of her.

     

  • Graduation Day

    It is Graduation Day, and I am so excited.  My last radiation treatment ever.  I will miss some of the people.  It's amazing how you become a team for the short time that you're having treatment.  Because everyone has a set time for treatment every day, you're with the same people in the waiting room every day.  You form bonds as someone is nearing graduation, and someone else is just starting.  People farther down the line can help the newer folks with encouragement and things to look for.  The techs are always there, smiling, hugging, encouraging.

    The nurses and docs are there, too.  Even though they're more busy, they will make the time for you if you need it.

    It'll be a huge change to not be going to radiation oncology every day.  But since I'll still be going to the medical oncology office (just not as often), I'll be able to swing downstairs and see the gang whenever I want.

    Today, we're taking a cake and the camera, so I'll bring Graduation Photos to post later.

  • Saturday

    Our Saturday was nice.  The girls are gone on their trip, so Paul, Dennis, and the boys decided to go skiing at Keystone.  They dropped me off at my parents' house.

    Mama has a frame shop that she loves, so I took my family portraits with me so that we could go over there and have them framed.  Before we left, my daddy was trying to figure out a way to take my tummy pump that wouldn't be conspicuous. 

    I should explain that the pump that I have is in two pieces.  One connects to the IV pole and has the electrical cord attached to it.  It holds, and charges, the actual pump itself, which can run for up to 12 hours on battery power.  The pump is fairly small and rectagular.  But it has to be lower than the bag that holds the nutrition in order for it to work correctly.

    So, Daddy got out his new camelback backpack, and we managed to get the food bag and the pump arranged in there the right way because the food bag has to be above the pump like on the IV pole.  We got it to work, and it was great, because I was able to go to the frame shop without disconnecting from Ms. Pumpin-Stuff .

    So, when we got home from the frame shop, Daddy was on a mission.  He went to Target and looked at every backpack they had (ready to head to REI if there wasn't an acceptable one there), and was going to figure out a way to make me more portable.

    He found the perfect backpack at Target.  The largest opening has a seperate pocket that the food bag can not only fit into, but a velcro strap goes through the "handle."  Then,  the pump fits into the bottom of that section.  Because it has to stay upright, he got styrofoam strips that had been packing for their new hot water heater, and made it a perfect little compartment that allows it to stay upright.

    Then the tube just comes through the zipper, and into my tummy.  There are 3 more smaller pockets that can hold all of my purse stuff.

    We had decided that we were going to try a trip to the mall (with me in a wheelchair) to get my hair trimmed and to do a little shopping.  The backpack worked wonderfully.  We hung it on the back of the wheelchair while we were walking around, and just pulled out a little more tubing.  When I was getting my hair cut, I just held the backpack in my lap.

    It was just really great.  I can be mobile without having to look like a freak.  I'm so excited!  I was worn OUT when our shopping trip was done (still am, honestly), but it was so great to get out of the house.  And because I was able to take Ms. Pumpin-Stuff with me, I didn't get weak or feeling icky.

    I bought 2 more stylish hats on clearance.  I need to do a hat fashion show, don't I?

    It was a very fun day.  But I was wiped out when it was over, and I am still a bit wiped out.

    The boys had great fun skiing, and Colton and Rohan even got to ski in the lights after dark.  Keystone resort has night skiing, and the boys had never done that.  But by the time they got to my parents' house to pick me up, Paul couldn't get Rohan roused enough to come in and use the bathroom to save his life.  He was just a floppy rag doll of a kid.  This morning, he came out of his room and told me that his legs were KILLING him.  Imagine that! 

    Paul turned 45 yesterday!  Happy Birthday, dear honey!!!

  • TGIF

    It's Friday!

    Chemo went OK yesterday.  I'm still a little dizzy, but am thankful that Paul is teaching today and the kids are at school.  I can just be lazy in the chair.  I've promised to carry my cell when I get up so that if I fall or something happens, I can call someone.

    So, that was my last chemo for now.  Monday is my last radiation treatment.  And then, it sounds like Dr. H is going to let me have a break for about a month or so and then we'll start up with chemo again.  In the meantime, we're keeping up with tube feeds, and even upping the intake a bit.

    Yesterday, I actually ate 3 meals.  I had a bowl of Cream of Wheat for breakfast.  Mo brought me a wonderful whole wheat bagel with cream cheese that I ate at lunchtime.  And then last night, the chicken dinner that was brought over smelled so good that I asked if Meleia would dish me up a bit.  The chicken was tenderloins, and she brought me 1 tenderloin and some noodles.  I ate it ALL!  And then, Ciera made me strawberry shortcake, and I ate that, too.

    Of course, this morning, I made Cream of Wheat, and 2 bites into it, it didn't taste good.  So today doesn't appear to be a good food day.  And the anti-nausea drug will wear off this afternoon/evening, so dinner won't be good, either.  That's why I'm hooked up to Ms. Pumpin'-stuff, right?

    OH, and according to Dr. H's office scales, I've put on 2 pounds since last week.  Cool.

    The one thing Dr. H didn't do (grrrr) is write the letter to work yet telling them that I'm cleared to work.  So, today, when I go in for radiation, I'm going to go upstairs to his office and nag him again.

    The day after chemo is a good quiet day for me, I think.  Not that I don't want or need people to check in on me.  It's just a good day to not have to visit much.  It allows some visualizing time of cancer cells being destroyed.  It also allows me to sit here sometimes just feeling weird.  Chemo really does just make you feel weird.

    I've discovered a new passion.  MetroMint water.  Stephanie brought me the Peppermint early in my treatment, and it really helped my stomach when I felt just a bit queasy.  But yesterday, Maureen bought me Lemon Mint.  Oh my.  It is so good.  I had Meleia pour a bottle of it into my 900 ml mug, add ice, and then add water to fill the mug.  There is enough flavor in the water that it works well that way.  The mint helps with the tummy, and the Lemon adds just a great flavor.  So try it!

    Too bad I'm not getting paid for blogging, eh?

     

  • It's chemo day again already!

    Chris, you make me laugh!  For those of you who didn't see her comment to yesterday's post, she suggested that maybe when my hair grows back, I'll be a sexy redhead.  Oh my goodness!!!  First off, it would be a dream come true.  I've always ALWAYS wanted to be a redhead.  My grandmother had natural auburn hair when she was young.  And I used to wish that I had inherited it.  I've colored it Auburn a few times, but it's such a drastic change that I've always felt weird about it.  But maybe I'll color it Auburn again.  My mom and I are talking about going wig shopping on Saturday.  Maybe I should get an Auburn wig so people get used to it.

    When they discovered the blood clot in my leg several months ago, I was put on coumadin as a blood thinner to dissolve the existing clot and to keep any more from forming.  Coumadin has to build up in your system, so while it was doing that, I had to give myself the shots in my stomach.  I had to go off of the Coumadin prior to getting my tummy tube (hereby named Ms. Pumpin'-stuff by my children).  So after surgery, I obviously had to go back onto the Coumadin and wait for it to reach therapeutic levels.  The test for therapeutic levels is the INR.  Don't understand it, but it's some sort of ratio that is important.  It has to reach 2 for Coumadin to be at a therapeutic levels in my system.
     
    After adding nutrition to my body, it has become harder to get the Coumadin dose figured out.  They upped my coumadin last week from 5 mg to the alternating 5 mg one day, and 7.5 mg the next.  We drew blood on Tuesday to check my progress.  Guess what? My INR didn't budge.  I'm so tired of these shots, but it looks like we've got another week of them coming.  WWAAAAHHHH!!!  They're very expensive, too, so I'm sure insurance is going to balk.  Did you know that if I had to pay cash with no insurance for the Lovenox Injections, guess what it would cost...  $1500 for 2 weeks.  I paid $150.
     
    I'm dizzy.  Was yesterday, am today.  When I went in for radiation, I talked to the nurse, who checked my BP.  My BP was fine, but my pulse rate was 105?!?!  So she pulled up my CBC from the day before, and my hemoglobin has dropped again.  2 blood draws ago, my hemoglobin was 9.4.  Last week, prior to chemo, it had gone up to 10.9.  Dr. H was excited that it apppeared that nutrition was causing me to make my own red cells, and that was great.  But on Tuesday, it was 9.9.  Why would it have dropped that much?  I've been hooked to Ms. Pumpin'-stuff just like the week before.  I'm feeling stronger every day.   What could cause that much of a decrease?
     
    I'm betting that Dr. H won't do chemo today.  He had already said that he wasn't sure he wanted to it because there are only 3 radiation treatments left.  But I convinced him that we wanted to give the radiation all of the help it could get so that it worked better.  But if I'm symptomatic due to the anemia, he probably won't do the chemo.  But maybe he'll give me some red cells?
     
    I just want to understand the drop.  I'm sure he'll explain it to me when I see him.
     
    Meleia starts soccer today.  Shew.  We still have 18"+ of snow on the ground, but they start soccer practice today.  I'm guessing that the coach knows whether or not the park that they practice at still has snow on the ground.  Brrr... 
     
    Ciera's in deep doodoo.  Our cell phone bill came.  Our contract doesn't include text messaging, since when we signed up, Paul and I didn't think we'd need it much, and at a dime a message, we could do it when we needed to.  Ciera told us that she had been doing "some" texting, and would pay us back for the 10 or 20 that she'd sent.  Want to know how many she had sent or recieved?  687!!!!! She's still paying us back, but she was blown away.  She thought the bill was wrong, until we showed her that the bill itemizes every call and text message, and she had to admit that yes, she'd probably done that.  The dumbest part is that one night, she sent or recieved 50 text messages in a 10 minute period to the same person.  If she had CALLED that person, it would have been free.
     
    The deep doodoo part is that some of these text messages were sent at 1 and 2 in the morning.  Now I know that she's not allowed to be on the phone at 1 or 2 in the morning, but truth be told, she's also not really supposed to be awake.  I know she is, and I know that she could be doing a whole lot worse things at 2 in the morning than texting.  But good gosh, child!  Our contract is up this month, and we need to renew.  So we're going to offer to her to not only get her own phone (rather than one she shares with Meleia) if she pays the $10, but she can pay the extra for unlimited texting if it's that important to her.  Especially since Paul got online, and so far this billing period, she has already sent or recieved over 250 text messages.  Maybe if it's her money, it'll be more important to her or something.
     
    Remind me that I will survive parenting teenagers....   If the cancer doesn't kill me, I'm afraid being the mother of 2 teenaged girls might!

  • Discharge Instructions

    Because Tuesday is "Doctor Day," and because my last treatment is next Monday, I won't see the doctor next week.  So, they actually gave me my discharge instructions yesterday.  There is light at the end of this tunnel!  The bad news is that the week after the end of radiation, fatigue will be as bad or worse as it is this week.  Blech.  But then it should start getting better and better.

    The radiation burns are still bad, and will probably get worse this week.  The problem is that because of the area being irradiated, my burns are on my backside.  Where I have to sit.  It's time for those to be GONE!  I guess they'll start healing after Monday.

    Can't wait!

    My mom and dad ordered me a special pillow set that will turn my side of the bed into a recliner!  So when it arrives, I'll actually be able to sleep in the bedroom next to my husband. It isn't that the recliner isn't comfortable.  It is.  I'm just tired of sleeping in the living room.  I'm tired of telling Paul good-night, and having him leave the room.  But because of the tummy pump, I have to be at a minimum 30 degree angle all night.

    My will is done.  I know, I know... I've had children for 15 years, a will should have been done a long long time ago.  But it wasn't, so get off my case.  But now it is.  It's very wierd to me.  I know it's a good thing, especially since I'm sick.  It just feels odd to figure out what to do with my stuff if I die.  I didn't name any specific gifts, but because the house is in my name only, the main concern was the family being able to stay here.  Now, we're counting on me not needing that will.  But it's good that it's in place.  I'll sign it on Saturday.

    This weekend, the girls are going on the church youth winter retreat, and Paul, Dennis, and the boys are going skiing.  I think I'm going to have them drop me off in Denver on the way and hang out with Mama and Daddy for the day.  Maybe Mama and I can go wig shopping.

    My hair is really falling out.  I still have a lot of hair, but it's just getting so thin.  I'm wearing my white Harley Davidson sweatshirt, and there is SO MUCH HAIR on it.   It's just hair. It's just hair.  It's just hair.

    Paul just called me from today's sub job.  6th grade Science.  He's going to be tired when the day is done.  But it's good for him.

    Have a great Wednesday.  And if you watched "Criminal Minds" after the Super Bowl, remember that the continuation is tonight.  It was so scary that I want to watch so that it's OVER!!!

     

  • Sunshine Lamps

    On Saturday, my parents brought me a sunshine lamp.  It puts out the same rays as the sun, and is supposed to help with the confusion, anxiety, etc. that I feel when the sun goes down.

    Today, I recieved an amazing gift... 2 more lamps that cast sunshine.  I will be putting those in my bedroom so that as soon as I can start being in there more instead of my chair, I can have the sunshine in there.  Thank you, ,Tim & Emily.  I know you didn't know that Mama and Daddy had bought me a lamp, but I do thank you for your generous gift.  The Sunshine has made such a difference.  I can stay awake in the evenings.  I can not be too confused or have too much anxiety.  Sometimes, it gets really bad, and for some reason, the sunshine really helps.

    Thank you.

  • Tuesday

    Today, I'm tired.  There is something in these "boosts" that is kicking my tail.  Add to it that I'm really starting to get some radiation burns, and it's just not a lot of fun right now.  These last 8 treatments are different from the prior 25.  They are only treating 2 fields, meaning that the machine stops only twice to zap me instead of 4 times.  And when they zapped me 4 times, the zaps were 4-7 seconds long.  The two field boosts are zapping for 14-16 seconds.  And something in that extra 10 seconds is draining the sheer life out of me.

    I'm still thankful for the tummy tube.  At least I don't have to think too hard to stay alive.  I don't even have to put forth the effort to eat.  I can just come home and crash in the chair.

    The sunlight lamp is still helping me through the evenings.

    I'm headed to treatment and a meeting with the doctor in a few minutes.  It'll be my last Tuesday doctor's appointment.  That seems amazing to me.  They've told me that the tissues can continue to respond to radiation for up to 8 weeks, so for the next 8 weeks, I will continue to visualize cancer cells getting zapped.  On Thursday, when I go for Chemo, I'll know more about what's following.

    This week, I'm not working at all.  I probably could, but at this point in the week, tomorrow is the last "good day" before chemo, so I've decided to just take this week as a wash.  My mom brought me yarn to make her a prayer shawl.  I got one from a lady at church that she loved while I was in the hospital, so I'm going to make one for her.  Maybe I can get it done this week. 

    Last night, I had another weepy time.  I've got to stop that.  It's so hard on everyone to see me get weepy.  But I do have to say that my teenaged daughters have learned how to step up to the plate and tell me what I need to hear, and to really be comforters.  I'm proud of them.

    OK, gotta jump in the shower to go to the doc.  Have a great Tuesday evening!!!

  • Monday

    Sarah goes home today.  It has been so wonderful to have her here.  It's like a safety net for the whole weekend.  She was able to let me know when I needed to take my meds, remind me to breathe.  I'm very thankful that her family sent her out here.  Matt, if you read this, thank you so much for sharing.

    My Daddy is coming down to take her to the airport, so I'll get to see my little daddy.  That's cool.

    I'm up to the goal of 50 cc's/hour on my tummy pump.  YAY!  With that, I'm supposedly getting 1500 calories through the tube alone.  So the rest of anything else that I eat is just gravy.  I had some Cream of Wheat for breakfast, so I've added some calories already today.

    Superbowl didn't go as I had planned.  But it was still fun to watch.  I'm happy for Tony Dungy.  He is a great man, and it was fun to see him win.

    I went to church yesterday!  It was nice to see folks.  I had to wear a hat.  My hair is thinning.  Not falling out in handfuls, but definitely falling out.  Oh well.  It'll get  worse before it gets better.  Bald will be beautiful.  Someone (tell me if it's you, please), found a foundation in Wisconsin that sends hats to cancer patients.  They sent me 6 beautiful hats that are perfect for church.  All 6 hats are "bucket hats," but very stylish and fun.  One of them has a HUGE brim, so I can wear it out in the sunshine and not get sunburned.  Which is great.

    OK, I'm off to get a shower.  Have a good Monday.