Wednesday, October 26, 2011

Today I woke up to the most AMAZING snuggles from my little one...and I felt so much stress, fear, and worry just melt away.  She seems to know exactly when I'm needing it...and she held me close with our eyelashes touching and I just wanted to pause life...and not let that moment go.  Last night I loved watching my oldest giggle to the point where she couldn't breath as she told me the cheesiest halloween jokes ever that she learned from school.  She said she was practicing them so that she could make me laugh...and she did...I laughed until I was pretty sure I ripped something inside.  I didn't feel well at all yesterday, but I barely remember that... These are the moments I cherish!

Wednesday, October 19, 2011

not pretty...I know...but I am not ashamed. It goes much lower than you can see here...but this is what is on the outside...the worse is inside the abdomen...but luckily we can't see that!

I read this in a book recently and wrote down the quote...
"A scar does not form on the means you survived!"  (from a book called Little Bee)

Can't see the sun, but can totally feel it's rays!

Sorry I haven't posted in so long.  Healing is like a dance...quick step forward, a few slow steps back, step to the side... and back again.  The music kept going...and days were passing.  I am rehearsing a new dance now and I am so grateful. The beat is slow...but steady.  Small step forward..sway to the music...small step forward...and repeat. get my drift.  There is actual forward momentum and I pray it continues.  I am out of my bed more and can come downstairs and get a change of scenery from my bedroom.  I have more energy...and I can see light at the end of the tunnel!

Sunday I got to visit with old friends from dental school we hadn't seen in years.  They stopped by from out of state and I was so nervous...but I was able to visit most of the day.  I also got to finally meet a new friend that has shared support through my blog and I was so grateful to embrace my new friend.  I am embarrassed that people have to see me this way.  I did get out of pj's...and tried to look somewhat normal.  I am movement is awkward and conversations are slow and scattered...but hopefully everyone understands.  It is part of healing... and I am finally healing. 

There was a miracle last week that I would feel ungrateful if I didn't share.  I was starting another abcess.  I knew what it was because I had one last year at after a similiar surgery.  It was setting me back badly because of the pain and kept me in bed non stop.  I went to the dr and they could feel it.  Almost the size of a tennis ball under my incision in the middle.  It hurt, and hurt, and hurt each time I moved any part of my body.  That night I prayed and begged the Lord to take it away...just because the last time I had an abcess the dr. that drained it made a HUGE error that almost ended my life.  I don't think it would happen again, but it was my most recent experience and terrified me.  I went in the next day for a ct scan...and the results showed no mass there.  It was gone except for a bit of inflamed tissue that was much smaller.  I believe in prayer.  I know the Lord doesn't always answer that way or take away our trials...but this time he did...and I am so grateful.  I am back on track to heal as I should...and I am grateful for miracles.  They didn't end in Biblical days...there are modern miracles daily...I have witnessed many and I am so grateful.  Many things in my life are broken...but my faith is whole and gives me so much hope.

Thank you all for your individual efforts and kindness you have shown to my family and I.  Please know that your caring about my story...your prayers, thoughts, calls, cards, visits, comments, meals, and so much more have meant the world to me.  You make me smile everyday and have made cancer a blessing.  I have never before felt so loved!  Thank you!!!

Monday, October 10, 2011

I can do this...

I came home from the hospital a week ago and I am dissapointed to say that I have made no progress.  I am stuck right now.  I was getting worse earlier in the week because of rampant fevers and infection, but got new medicines last friday that should help.  I am no longer slipping backwards, but am feeling frustrated that I am not moving forward either.  I can't tell you how hard it is to have weeks slip away where you haven't been able to participate in life.  Please note: This hasn't even been a fraction of as long as the other times I have been laid up, but after all of them, I am just done being bedriden...and I'm SO ready to heal.  I wish I had more control over my body right now, but I DON'T.  These times where I feel so powerless are those that allow me to communicate so honestly with my maker.  He has been beside me each step of my life..but I have recognized his presence so strongly as my health has failed. 

This morning I was feeling down when my girls were going off to school in mismatched outfits and crazy hair.  It takes so little energy just to pick out clothes and fix their hair, but I didn't even have that much.  I wanted to shower, but I am just too weak...and I was just hurting...every part of my body seems to be hurting.  I had a moment of feeling sorry for myself wondering why I had to do this again... and then it was over.  I was overwhelmed with what I could best explain as a ray of sunshine.  It put a smile on my face and reminded me to keep that smile.  Smiling along each step of the journey is what has allowed me to get through all the hell of the last to years.  This surgery and recover is ROUGH...but nothing compared to what I've been through.  I just think my body is tired.  So, I gave it a pep talk...and my smile is back and bigger than ever.  I am making post it notes of postivie affirmations for my bedroom... and I'm counting my blessings that this soon will be over.  Already I feel stronger..and I am at least out of bed and sitting at the computer writing this.

Friday, October 7, 2011

IV's and help

The last two days just felt like I was stepping backward and feeling pretty crummy.  I finally got a hold of my surgeon and he ordered bloodwork and cultures on the fluid that has been accumulating and draining everyday.  I ended up getting an IV infusion of some antibiotics to start helping as they were very confident that my abdominal cavity was severely infected again.(the cultures will come in by Monday...but they didn' t want to wait and have me crash worse.)  I wish I could have taken notes, but the dr. explained to me how my insides are just so prone to infection post surgery because of the compartmentalization that has occurred because of scar tissue and adhesions all over.  It doesn't make sense as I type tonight, but helped me to see what might be going on inside.  I am so grateful for a caring oncologist.  They kept 4 staff members on after 6 on a friday evening when they had already closed just to help me.  If not, I would have been admitted to the hospital to receive the same tests, iv's, and care, but I would have had to stay at least through the weekend.  I ended up covered in hives from the antibiotic, but they fixed that, too...and I am starting to feel better already just a couple hours later.  I sure hope this makes a difference and helps me start really healing.  I have some truly wonderful doctors that are on my team and was so grateful for their time tonight.

Wednesday, October 5, 2011

Home again, Home again...Jiggety jig!

Scavenger Hunt was a success.  Addie was
terrified to crawl into my bed previous to this surgery.
Despite fevers and a bit of uncertainty, they doctor released me and I have slept in my own bed the last two nights.  Yehaw!  I was even cleared to shower (which felt amazing!)  There are no vampires sneaking in to take my blood in the middle of the night, no IV alarms going off at random times all day needing assistance, no more sponge baths by grumpy CNA's that don't really enjoy scrubbing my unreachables (yes, I am still feeling a bit rejected by a few of them.)  I am in my bed and have slept much better.  I still might need additional help if these fevers don't clear up, but I was happy for a break.  Being home is always an amazing milestone after surgery...but is harder than it sounds.  Just getting up and downstairs to fill up my water is a daunting task.  My bed is also much higher than most and feels like it engages every core muscle that was sliced just to awkwardly crawl in.  You'd think I'd have that figured out by surgery #12, but it is always hard.  I do think I am getting around a bit better than the others though.  I had tried to stay so active up until the day of my surgery because I could...and pushed through the pain. I think it is helping my recovery already.  They left a drain in the lower left area of my abdomen that is producing quite a bit of fluid and is the most awkward strap on drain that I have ever worn.  I will try to post a pic in the morning.

So many other things are on my mind...but battling cancer is much more than just chemo or those tag words you hear about so often.  My most important part of the battle is TODAY and is healing from THIS surgery and not letting small complications retell my story as they have threatened to do in the past.  I'm so disappointed that the Dr. missed a HUGE chance to do the heated chemo...but I have so much hope that amazing things are on the horizon.  I'm enjoying today...taking it one step at a time. (literally..)  I picture myself where I want to be in a few months.  I visualize my kids and I making crafts and laughing together, I picture my next doubles match in tennis and can't wait to swing my raquet.  I see myself walking with my family as the crisp fall approaches.  I see myself back to running the soccer carpools and teaching my primary kids music on Sundays. I can't wait to be back in my life doing what I love.  These chances where that is taken from me always remind me to fully appreciate each day...each moment. 

Sunday, October 2, 2011

Hospital Day 10:

Hospital Day 10: I'm excited for my family to come see me today. I'm trying to sweet-talk a nurse to help me wash my hair and give me a sponge bath. :) I'd do it myself, but I hurt pretty horrible still. They had to remove my epidural too early because of an infection in the spine...and they haven't figured out a reasonable pain control method since. I'm just trying to roll with the punches. My abdomen is swollen and is persistently making insane amounts of fluid. The small drain is trying to keep up, but it feels like I am going to rip my stiches from the pressure from the fluid. We aren't sure again what is causing that. I have had it for over a year, but now the drs. get a better firsthand look.

I'm still running constant fevers which are not good. Obvoiusly a sign of an infection somewhere...but which one. We don't know yet. Last year I was running fevers and had an abcess after this same surgery.  A radiologist went to drain it and missed the abcess completely, but stuck a drain in my intestines (that had already been cut on 5 times plus burned and poisoned) another emergency surgery was tried by my intenstines and stomach opening couldn't even be stitched closed. My skin and tissues where too compomised to even hold a simple stitch. It was so gross. You could see all the way to the inside of my intestines by looking in my stomach. If I would shoot out of my abdomen and spray the wall. (sorry...there were worse be glad I chose the "safer" flashbacks.) It started a cycle of fighting for my life. I was 88 lbs, on a feeding tube, wound vac, borderline comatose, and almost lost my battle to a stupid abcess. Sorry for the long rant, but the Dr's think I have another one. You see why that makes me a bit nervous. I'm sure the darn fever I've had all week is from something else...pneumonia sounds good. That is their next best guess. Please just not another abcess. 
There is probably more I should write, but my thoughts are on my kids coming.  This has always been a very scary place for both of them...and most of the time I was too critical for them to come anyway.  I want to make this fun.  I have gathered strange goodies from around the hospital and am making them a treasure hunt with clues that will take us around the floor of the hospital I am stuck on...but also am going to do a photo scavenger hunt around my room and the winner gets to cuddle with me for extra time. cheezy,  yes...but I want my kids to be distracted by games and just feel more comfortable and natural here than the past.  I hope it works.  Addie is terrified of hospital beds and always worries that she will hurt me.  If I can get her to snuggle a bit in my hospital bed, than that will be great.  I'll let you know how it goes.  I need to go make my clues and start hiding them.  I'm back in my blogging groove...

Saturday, October 1, 2011

More CaNcEr!

Yes...there is a very long, upsetting story behind it, but pathology came back yeterday and there was more cancer hidden in scar tissue.  They found a good sized tumor on my uteris wall, but knowing the Dr.didn't see this means that we have no idea what else is out there either.  It makes me VERY nervous.  Based on the size, it would appear that this tumor survived the heated chemo the first time and grew in scar tissue.  My abodmen is FULL of scar I have to admit,  I am brokenhearted at the thought of what else might be looming.

Also, the reason I did this surgery was to do a needed hysterectomy , eliminate the pain I've been n the last months, remove any cancer found and most importantly...DO THE HEATED CHEMO...which is an amazing resource and has the potential to save my life.  I'm so grateful fo the hysterectomy, because that is how they found this hidden tumor.  But I am disheartened that the dr. missed the opportunity to make a big difference in my battle with this pesky disease.  Thanks for your continued prayers and thoughts!  I continue to feel so blessed despite the unending trials. Our life experience is largely a matter of our perspective, isn't it?  My process remains...each time a new trial is dumped on you...find the silver lining, no matter how small or descrete.  There will ALWAYS be one.  I am going to go find mine right now.  Thanks again to each of you!