Tuesday, June 29, 2010

Insight learned from experience...

Now that I have a potentially fatal illness, I have seen a million different reactions that others have when I share my diagnosis.  Some are so genuinely comforting, caring, and heartfelt...some are shocked....and some act as though they didn't hear you.  I have learned to manage them all...but the one thing that still just drives me insane is when people start telling me of all the loved ones they have lost to cancer and how horrible their battles were.  Please don't do that to anyone...it is painful to listen to!  My daughter Aana, finally trusted a teacher at school and mentioned what was going on at home a few months back...and the teacher didn't think before talking and told her that his sister died of cancer.  YOU DON'T say that to a 7 year old who just shared her biggest fear with you and put you in her circle of trust!  It crushed her...

I have also learned that some people just say...I'll be praying for you...and they might forget as soon as you walk away...but others really DO pray for you.  Those people have changed my life...have taught me so much...and I have learned from them.  I am a better person because of them.  You (who are reading this) might be amongst those whom I consider my angels.  Thank you for following through...and keeping my familiy in your prayers.  Prayer is real.  The Lord hears and answers them...and many blessing have come my way because of them. 

Half empty...or half full?

Today should have been my half way mark...it was my 6th chemo infusion out of 12....and I was excited to celebrate....but...my doctor this morning hinted for the 2nd time that my previous infusions might not count, since they had to make a ton of changes to my doses and treatments to find something my  body could tolerate.  Now...I am not sure if I am half done...or just beginning all over again.  Either way, I suppose I should just CHOOSE to be happy that I have a dr that isn't willing to take the easy way out and who genuinely wants the best treatment possible for me.  Life is full of silver linings...I am learning to look for them constantly.  Sometimes you have to look hard and other times they are much more obvious...but they are there. 

As an update: I did get my full treatment and am now plugged in again with my fanny pack pump attached.  I was experimenting trying to put my iv bag and pump into cute purses to carry around to make it less conspicuous...but, I kept forgetting and setting it down.  It was all fine until I walked away and it pulled at the "GRIPPER" needle they have in my chest and HURT!  It took me several times to learn, but I know now that I just need to keep the fanny pack attached and live it it.  If you see a good looking one let me know.  Do they exist? 

Sunday, June 27, 2010

Rough Night...but so far a beautiful day!

Here are some quick pics of my girls going to church today. Tonight Aana will be singing an unaccompanied solo at a Baptism and I will be giving a talk. I am much more excited to hear Aana sing than I am to speak...but that is life! :)

I have been having a LOT of episodes of VERY sharp pain in my stomach that basically incapacitates me...and I had another rough one last night.  I had a blessing, said many prayers, was able to rest well after that.  I am concerned it might be my gallbladder, but I will probaly end up getting another ct or test tomorrow to see.  It has really been bothering me lately!

Friday, June 25, 2010

Unplugged...and in LOVE!

I might sound repetitive...but it feels SO good not to be attached to that chemo pump for the last couple of days.  Tuesday I get a full all day infusion and get the pump back.  But for now...I am in love.  I can change clothes without having to feed tubes through first...I can shower, bathe, swim...I can dance without tripping on my tubes...I can walk by doorhandles without getting tubes hung up...and it feels SO darn good!!!!

UNDER CONSTRUCTION...and help wanted

I really wanted to give my blog a facelift, but can't seem to find what I want.  I just want a cute header with a picture...and some thing fun for a backgroud.  I got tired of looking at the last one.  Do you know of a good blog designer...or know how to help. If so, please let me know.  Thanks in advance?

Wednesday, June 23, 2010

Oh what a day...

Last night the alarm on my continuous pump went off and alerted me that it was out of the chemo liquid...so I got to go have the pump removed for the next 6 days.  So last night, I got to toss and turn ALL night without getting tangled up...this morning I got to take a FULL shower (which I hadn't been able to do in 3 weeks)...and this evening I went to the pool with my kids for a little while.  I actually felt human...it was AMAZING!  It is a shortlived pleasure, since I will be hooked back up again soon, but I will cherish every moment until then!

Tuesday, June 22, 2010

Dave Ramsay would be proud!

Today the funding went through and we just refinanced our home for a 15 year mortgage at 4.375%.  We were pretty excited~ That might be a strange thing to post on a blog...but it is a big deal for us because it will save us over $480,000 over the term of our loan... and that is HUGE!  Please don't get me wrong...we still have a TON of debt, because of Larry's grad school loans, etc...but where you can save, you should...and I am just grateful we were able to do this!

Saturday, June 19, 2010

The show must go on...

I almost forgot to mention...This week my husband and I went to Seattle for a Cirque du soleil show called Kooza.  He bought our tickets about 6 months ago...and we almost forgot about them (because of all that is going on.)  My parents watched the girls and I was SO grateful that my stomach made it through the drive and the show.  We had a great time, but I came home yesterday completely EXHAUSTED!!!  It was nice to get out of house!  I needed it!

You take the good...you take the bad...

Yes, you all know the song..."you take them both and then you have the facts of life!"  Isn't that so true...some things in life you just can change, or fix, or sugarcoat.  I have been dealing with some of those things...  they are the facts of MY life.  I know you all have your own. :)

I am overdue in posting, but this week they couldn't do my regular infusion.  They always do bloodwork and a doctors appt before my chemo and this week my platelets were too low.  For those that don't know, platelets are what helps your blood clot.  There is nothing that they can give me to help raise my platelet levels, so we just need to wait.  I am getting several bruises, nose bleeds, and red spots on my skin that they say are normal with low platelets.  This happens with chemo and will hopefully clear up in the next week so that I can continue with my treatment.    The other thing they found is that I have a pretty horrible urinary tract infection.  I have been having abdominal pain, but I have abdominal cancer...and have had several surgeries that are still tender, and have had some pretty severe bowel issues...so I didn't suspect anything else.  I have been dehydrated since early April and you run a high risk of a UTI if you are dehydrated.  I wish we would have found it sooner, but I am glad to know now...so I got the right antibiotics.  I am hoping that was the culprit for some of the pain I have been having.

My hair is starting to fall out even faster.  If I go to fix it, brush it, wash it...or wake up in the morning...there will be a handfull of hair.  It is amazing that I still have any.  I am SO grateful it was so thick to start out with!  I am still hooked up to a continuous pump and constantly have tubes hanging out of my shirt.  I am slowly getting used to it.  Other than that, I am truthfully feeling under the weather.  I would give anything to be able to be at the pool with my husband and kids right now.  I feel bad being such a downer this summer...but I HAVE to do this.  I want to be around for MANY more summers!  I will redeem myself and remind my kids that they have a FUN mom someday soon!  Thanks for letting me vent...I feel better already!

Wednesday, June 16, 2010

~ReLaY For LIFE!!~ And an amazing outpouring of support!

Larry's office WEST PASCO FAMILY DENTAL and the staff worked hard to get everything together for us to be part of this amazing event.  We earned almost $4000 dollar for the American Cancer Society.  The team stayed up all night walking and took shifts while they let me sleep up in a trailer.  Amazingly they all looked cheerful and fantastic in the morning...way to go!!  Dr. Frodel and his wife Kim were very generous as well in their efforts and dontations and I can't tell everyone how much this meant to my family and I.  We had friends from all over show up to offer support...and it was perfect! 
These were luminaries that were up in the bleachers...and they had luminaries all around the track with people's names who are battling cancer, or who fought hard in their battle against cancer.  I also got to be recognized as a SURVIVOR at a nice dinner and survivors lap.  A part that meant so much to me was being able to show my girls that they aren't the only ones who have a mommy that is so sick.  They walked with me and I was able to show they ALL the cancer survivors...and I could just see Aana soaking it all in.  It was just an overall wonderful experience!!!

Friday, June 11, 2010

Thursday, June 10, 2010

Our RELAY for LIFE is tomorrow...and I am excited!

I am just praying that I will feel well enough to participate and think it is going to be an awesome experience.  I will share pictures when it is done and let you know how it goes.  I didn't get enough tshirts for this round because we were in a pinch to get them printed on time for all of his staff and my immediate family...but here is a proof of our shirts.  If you are interested in them...we they around $12 and I am putting in another order next week.  Proceeds from the shirt are going as a donation to the American Cancer Society.  A friends friend designed the back...and emphasized great words with the letter "c" instead of the scary one.

Please do not feel any pressure, but if you were wanting to make a donation to the American Cancer society, here is a link to our team for the relay.  The staff has done an amazing job fundraising and the money goes to a great cause.  I don't know anyone whose lives haven't been touched by cancer, and we are making so many advances in the treatments.  The donations are tax deductible and it allows you to print a sheet once it is complete. http://main.acsevents.org/site/TR/RelayForLife/RFLFY10GW?px=16399886&pg=personal&fr_id=21780

Chemo Update

I am sorry I haven't posted lately, but I wanted to let you know what is going on.  The above picture is basic, but is me getting an infusion at the cancer center.  We have little cubicles with recliners, tvs, dvd players...and that is about it.  They are simple, but I spent a LOT of time there lately between getting iv fliuds and the long infusions.  I have been waiting to see how this round has been going before I reported anything...and my inlaws were in town visiting (so we I have been distracted.)  As you know, I had a regular 9 hour infusion a little over a week ago, which is usual.  The part that changed, is...the oncologist is trying one last time to give me that important drug that seems to HATE me.  In addition to my regular infusions, I am also now wearing a continuous chemo pump 24 hours a day which gives a low dose of that drug over a three week interval.  Clinical trials have shown that this way can work if my body will tolerate it.  Most patients just don't do this because of the additional complications and hassle of having to wear a pump.  The needle is pretty good sized and is clipped into my chemo port as seen in the picture.  They have it covered with a thin protective layer that keeps out water, dirt, etc. in hopes to avoid infection.  It is pretty sore right now, but I am hoping my body will get used to it over time.  The pump is strange to carry around....I have a purse type of bag or a really fasionable "fanny pack."  It makes showering challenging and the cords wrap around me when I sleep.  I have tubes coming out of my shirt  my shirt and it tends to draw attention when I am out of my house.  I see people looking and I know they want to ask me what it is for... and I don't blame them.  It isn't something you see everyday and I would wonder also.  So the picture shows what I have to carry around.  It is the pump, the chemo, extra batteries, and the blue thing is...you guessed it...a puke bag.  I like to be prepared! :)

So far it has gone a bit better than the other methods.  I am still far from being comfortable or my normal self.  It is still reaking havok on my bowels...but I am on opium drops that help with that as much as possible.  It is an old remedy, but is what we have had to use because the injections and other medicines they have tried all give me too many side effects that make the situation worse.  Who would have thought that I would need several doses of opium a day?  Life is crazy...

Tuesday, June 1, 2010

And we trudge on...

My oncologist called me at home this morning and wanted to let me know that he wants to try another round of chemo tomorrow.  They are going to reduce the dose of the 5FU (which is what makes me SOOOO sick.)  I know that reducing the dose decreases the effectiveness of the chemo but they want to try it.  I have been told by several oncologists that my cancer is not well treated by IV chemo and that this will only increase my odds by 5-10%.  If I am decreasing that... it might seem as though I am torturing myself for very little chance of change.  I have an appointment before my infusion and want to really talk to him about this.  I will post later to let you all know how it went.  Please continue your prayers...for my body, but also my doctors (that they will know what is necessary to treat me and HOW to do it.)  Thanks again!  You are all amazing...