Hysterectomy...

I've known for several months now that I need to have a hysterectomy.  Everything must go.  I finally put on my big girl panties and returned to the gynecologist's office yesterday.  My surgery is scheduled for one week from today, 4/12/11.  Wow.  Lots of emotions attached to this...but, mostly it'll be one less thing to worry about (less parts to get cancer in).

Now, I'm cramming a bunch of research in and trying to prepare myself.  My biggest concerns right now are my history of DVT and hormone replacement therapy, and the fact that it's looking like I'll need to have an open abdominal surgery.  I had REALLY hoped to not have to go through that again.  *UGH*  I will, though, for my guys.  Much less risk this way.

I've found a great resource for support and research on this topic.  Hope it'll be helpful to you as well.

Hysterectomy Support

Last Chemo Craziness.

Tomorrow is my last chemo, assuming my blood counts are high enough, and I'm going a little crazy.  This is not an unfamiliar phenomenon in our home.  I went through it when Hadley ended chemo.  Every. Single. Time.  It's something I've tried to explain to folks who haven't traveled this road, and I'm sure I'll sound just as certifiable now as I have in the past.  That's ok.  I'm one with my insanity.

When you (or your child) are diagnosed with cancer the normal response is to follow the stages of trauma/grief.  After reaching acceptance you typically are ready to fight.  You fight like there's no tomorrow.  Damn the odds.  The doctors can't predict your destiny.  You (or your child) ARE going to beat this.  So, you fight.  Chemo, surgery, radiation...whatever it takes, you do it.  This is where I've been.  I've been fighting.  I've been putting on my brave face and waging war.  Tomorrow is the last battle in that war.  After tomorrow it is done.  At least part of it.  Once the war is over you wait to see how you've done. Who wins.  Will the doctors be right or wrong? If you haven't won will you have the chance to fight again?  Are you even strong enough to fight again?  How does the chapter end?  When the battle is done there's nothing left to do but wait it out.  Your false sense of control and security is gone.  All the dark and twisty parts of your brain come out into the open.  Fear tries to creep in.  Things get gnarly again.  Craziness ensues...

So, while I'm thrilled at the prospect of ending chemo and taking back my life...I'm all kinds of crazy right now.  Like so many things...this is a double edged sword.

Consider this my caution sign.  You've been warned.

Muir-Torre Syndrome

http://emedicine.medscape.com/article/1059260-overview

Just saving a link for my oncologist. Need to get a referral to a dermatology Onc.

Team 9500-Shamrocking!

http://www.facebook.com/event.php?eid=145622505498009

Your team number is 9500.  Below are some instructions to help you assist your teammates in registering.  Please let me know if you have any questions.

Go to:

http://www.shamrockrunportland.com/

Click on the orange box that says:

CLICK HERE TO REGISTER ONLINE 
SHAMROCK HOODED SWEATSHIRTS FOR SALE, TOO

Select category:

Team Option - 15 or more $27.00

Don’t forget to check this box:

I understand and agree to the waiver and release*

JUST CLICK CONTINUE ON THIS PAGE:

If you have a Discount Code, please enter it here:

Fill out all your registration information and don’t forget to put your team number here:

Team Registration Number*  (Children age 12 and younger can be on a Team if the team has at least 15 members who are age 13 or older).

Well howdy.

So, I've been awful about keeping up with this blog.  I had every intention of being faithful to logging my chemo journey.  I had really hoped other folks out there would find it useful.  The reality of the situation, though, is that I have a family and friends who all love me.  When I'm not feeling awful I am either spending time with them or trying my best to care for them.  Caring for people makes me happy, gives me purpose.  I need purpose right now.  I need to feel needed.

I've struggled a lot over the last few months with my own mortality.  Not so much with my own issues with it...but, with the fact that I have a husband and two young boys.  I worry.  It's a part of who I am.  I consider my worrying both a strength and a weakness.  A double edged sword at times.  It is what it is, I suppose.  These men of mine have been through so much.  Too much.  Another double edged sword.  Because they are amazing people their experiences and journeys have helped make them the amazing people they are.  Their grief and heartache and challenges haven't crippled them or stolen from the character.  They have used every chapter of their story as a growing and learning experience.  My boys are tough, but sweet...compassionate.  I am proud of them.  I have watched my husband's heart grow kinder.  He has become an even better father and husband.  I HAVE to trust that this would be the case if I were to die as well.  I have to believe that they wouldn't fall apart, that they would live, be happy, love, grow...thrive.  Getting to this place, where I trust that, though, has been hard.  Quite dark.  Filled with lots of what if's and tears and pain.

Most people would probably find that morbid.  Because I am who I am, and because of my story, I can't be that girl who says "I'm going to be fine.  There's no other option."  I really wish I could be, sometimes.  I can't.  I have to acknowledge the 'other' option...make peace with it and then move forward.  It's just my process.  So, yeah.  Morbid?  Maybe.  It is me though.

I've felt pretty well this week.  Last week was hard.  I felt pretty cruddy through the entire week.  I have some swollen nodes in my neck and jaw that are...troubling.  My oncologist checked them out last week and is gonna check them again on Monday.  He wants scans if there's no improvement.  I sense scans in my near future.  (did you hear that sigh and eye roll?)

Overall, though, life has been good.  I feel good this week, the sun has been out, my boys are doing well, the mister and I are about to celebrate 11 years of wedded...ness, I kid, I kid.  Eleven years of wedded bliss.  Plus, only two more treatments left on FOLFOX6.  Ten down, two to go!  YEEEESSSS!    (now do you hear the angels singing?  I do.)

In other news, we have until February 25th to get everyone registered for the Shamrock Run!  I'll post the team number as soon as I have it.  Those of you in Portland who are interested in running or walking with Hadley's Heroes please register with our team!!!  :)

Read with caution:

The closing of an email to best pal:

This bitchy moment brought to you by:  Insomnia. We let you live YOUR life, only stupider and with less patience. 
And also by:
Chemo. Because you didn't already feel terrible enough when we your body was being taken over by cancer. 
With special consideration by:
Hemorrhoids.  Only we can make three straight days of explosive diarrhea even MORE fun. 

;)


Yeah. Needless to say, this cycle has been a bit of a bummer. Thanksgiving morning I woke up having an anaphylactic reaction to God only knows what. This is the 3rd in the last year and a half now. So far my allergy testing has only shown that I'm allergic to something but, nothing they've tested me for. Swell. This reaction was a bit different than the rest because I'd been asleep in my own bed all night. So, since the Abdominal pain, vomiting and diarrhea started during this 'event' I'm assuming it's related to that. It's not usual
For those side effects to be present this late(day # 9-12)in the cycle. Regardless of what's causing it my body is tired and I'm feeling truly beaten down for the first time since Starting treatment. I really feel like starting another cycle on Wednesday (just 3 days from now) is not possible. I'm exhausted and sick and in enough pain as it is. I'm about to bust out my biggest pair of white granny panties and wave 'em overhead for the world to see. This mama needs a break.

So, there you have it folks. The whiniest, most bitchy Thanksgiving blog ever. I promise to blog about my thankfulness when my attitude has improved. Perhaps after my Oncologist has given me his blessing to skip, or at least postpone this coming cycle.

11/3/2010

10/27/2010
Many Thanks to DragonLeaf Photography
http://www.dragonleafphotography.com/

It's been a month and a half since my last update.  I had intended to update at least a couple times a week.  My bad.  So, to catch you all up here's a list if what's happened in that time:

• I do, in fact, have Lynch Syndrome (HNPCC).  An MSH2 deletion defect, to be exact.  
• We are still sorting through pros and cons and feelings about having the boys tested.
• The Lynch diagnosis lead to a whole new set of tests and screenings for the cancers I'm at highest risk for.  So far:
• Complex Cystic Mass on (R) ovary.
• Thickened endometrium
• PET scan was negative for rapidly growing cells.
• Complete Hysterectomy will be performed early 2011.
• Abdomen/Stomach etc all look good.
• Tests/Screening still to complete:
• Upper GI with Small Intestine follow through.
• Ophthalmologist to address possible pressure(?) issues. (Eye pain and wandering eye)
• Dermatology-I'll get into that in my next post.  (*SIGH*)
• So far my blood counts haven't dropped too low or been unable to recover back to normal within a two week period.
• November 17th will be my 6th treatment.  That will put me halfway through my regimen.

So, today is day one of cycle five.  The neuropathy sets in immediately and gets a little worse with each treatment.  It's not pleasant but, it's still bearable.  I'm very hopeful that this will go away after treatment as it fades almost entirely by the end of a two week cycle.  I'm tired and have a pretty wicked headache and a small cold (no fever).  Other than that I'm feeling good.  

Next Wednesday morning I have the upper GI.  Hizzah.  I think I'm most nervous about the small intestine.  Hopefully it'll all look good.  It's already been decided that when I relapse or have to go back in for another resection they'll be performing a full collectomy and I'll have a colostomy for the rest of my life.  I'm trying to keep that in perspective and not dwell on it too much.  Most of the time I feel so old...like I've been through too much to be only 32.  I MUST be older than that.  When I think about having a colostomy for the rest of my life, though, I feel very young.  Too young for this.  *sigh*  Brandon is too young...but, I can't go there right now...cause then I cry and that actually causes physical pain right now...so...

Overall the cycles have followed the same pattern.   The side effects are a little more pronounced and last a bit longer with each cycle but, the pattern is the same.  

Thank you for continuing to pray for, think about and love on my family.  If you're one of the lovely folk who have brought us a dinner (or three)...Thank you.  There really aren't any words that truly convey what a blessing it is to have that extra time with my family...and to not have to worry about the planning and prep etc when I'm not feeling well.  You have blessed our family in a very tangible way and we are thankful.  <3  Mrs Breanna N gets an especially huge thanks for organizing all of that.  Friend, I'm so glad you are a part of my life.  I admire your heart so much.  Thank you. <3

 If you're here for info and support, I'm sorry I haven't offered much.  I have found a couple of links I've found helpful.  I'll post a little later today with those.  You can also feel free to email me at:  CoastieFoxes at yahoo dot com.