Tender...tender mercies

We made dinner for a friend this week and a very special experience happened when dropping it off.  My youngest was playing with their daughter that is the same age.  They are really good friends.  She sat down beside her friend and quietly asked, "have you been praying for my mom, because she really needs it?"  Her friends said she hadn't but was so glad I am starting to feel better.  My little one grabbed her hand and said, " than lets say a prayer for her right now."  These two 4 year olds stopped playing and said a prayer for ME...and asked our Heavenly Father that I will have no more cancer, no more surgeries, no more chemo, and no more hospitals...that my stomach will feel better, that I won't have anymore big "owies", and that I can be a Mom again.

This is part of the reason I can honestly say cancer has become a blessing.  To witness this powerful testimony of prayer...by a 4 year old...who knows to kneel and ask her Lord for help in the thing that is upsetting her world the most.  She KNOWS he hears our prayers...and she doesn't skip a day without asking for his help.  (and apparently doesn't let her friends skip any days either.)  She somehow has the patience to know that not all prayers are answered immediately or on our time.  Her simple, yet profound faith is an example to me. 

The Dr. weighed in...

First of all, I have to tell you that I am getting stronger each day.  This has definitely been my slowest recovery, but I think it is to be expected with all my body has been through.  Yesterday I made dinner for my family...and even homemade bread. (which was huge for me.)  I am pushing myself as far as I can daily and can't wait to report to you that I'm fully back.  I'm trying...so hard!!

As you know...they did find more cancer with the last surgery.  It was on my uteris (which was removed with several other organs)...but it was good sized and went undetected by my doctor because it was hiding under SO much scar tissue.  The inside of my abdomen is covered in 3rd degree burns from heated chemo and other treatments...so there is TONS of scarring all over inside.  There is a chance that was the only cancer there...but the likelihood is not in my favor.  I had been waiting on my oncologist to tell me if more chemo was needed. 

I had my appt and he was so kind, but explained that there wasn't anything left to give me right now.  We tried several different regimens already and I already had a reoccurrence, so he had no evidence that it did any good.  I was bummed as you might guess, but I am at peace with it.  I feel deep in my heart that I have more time...and  I pray that during that time other treatments will be discovered.  I have an orphan cancer, though...and there aren't many patients diagnosed with it.  That means that there aren't really any clinical trials to develope treatments.  I have heard rumor of one that is lacking funding...and is specifically for appendix cancer.  I am working to organize a run that will benefit that clinical trial.  The efforts could very well save MY life...  You will definitely be hearing more about that as it evolves.  Thanks again for all of the support.

to quote a legend that lost her battle to appendix cancer...the beautiful Audrey Hepburn.

With Gratitude

Our Thoughts go to those that have paid the price to allow my children to live in freedom. 

"A nation that does not honor its heroes will not long endure."

-President Abraham Lincoln



The Musings of an ambitious Child...

My 8 year old is awesome and fills my life with so much joy.  Today I couldn't help but to laugh as a scene unfolded.  Maybe you will find this funny...or maybe it's just me. 

All day she was practicing writing stories in pig latin.  I thought it was cute and was just glad she was practicing writing.  Then she explained that she was working really hard to memorize pig latin, because she wanted to be a teacher in a pig latin school when she grew up.  I smiled...and was so proud of her ambitions.  Then I had to deflate her dream and tell her pig latin was a made up language for fun.  She was bummed...then I saw her in her room throwing away her stories and flashcards.  It sure was a fun idea for an afternoon, though...and it made me smile.  Cheers to pig latin!

Living with Cancer...

http://www.tri-cityherald.com/2011/10/31/1699617/faces-of-cancer-fighting-for-your.html
I got to be part of an article written to end the newspaper's month of "faces with cancer." This was focused on living with cancer.  I wasn't pictured because our schedules conflicted...but I felt grateful to be included.

 It has been interesting to think afterward of what I reallly should have said and what living with cancer really means to me.  Most of my ephiphanies come in the middle of the night when everyone else is sleeping and I can't...when my body hurts each time I move and my mind is weighed down with too many things to allow me to sleep. I don't remember them all right now, but here are a few that are in my mind. 
 

For me, living with cancer means:  

A lifetime of doctors appointments...and hanging on each word they say as their words determine my future.

Always holding a dark umbrella, but making extra effort to not live in it's shadow.

Being aware of every single minute in my life...and accountable for it.

ALWAYS keeping my focus on the sunshine...even in the dark.

Letting go of independence and relying on others for help with everything when needed.

Cherishing each gift life has to offer...and the simplest often mean the most or would be the most missed.

Not allowing petty things to ruin my day/relationship...because time is so valuable.

Being able to turn EVERYTHING in your life over to the Lord.

PATIENCE...on SO many levels!

Knowing that sometimes there is no way of fixing it.

Learning how to say "no" in life...and focusing all energy and time on what's most important.

Realizing that health is much deeper than physical appearance...looking healthy doesn't mean being healthy.

Being BRAVE even when you really want to curl up and cry.

Sharing love and kindness when you can...for no reason.  Becasuse it has meant the world to me.

Pressing forward in FAITH and HOPE... NOT FEAR...and knowing that I've done everything I can do.

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!

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 dying...it 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.  Yes...you 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 slow...my movement is awkward and limited...my 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!!!

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.

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.

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. 

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)..so 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 coughed...it would shoot out of my abdomen and spray the wall. (sorry...there were worse stories...so 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...

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 tissue...so 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!

Wed Morning

       Shanda has now been in the hospital for six days and unfortunately we are now seeing some post surgery complications.  Recent blood work has not been favorable and will possibly require some blood transfusions for Shanda.  The epidural that was placed in her spine seems to be sliding out, and therefore making it more difficult to control Shanda's pain.  They are trying to get that resolved, but Shanda has moments of severe pain because of it. Poor thing.  She has had a fever on and off and now her belly seems to be building up with fluid.  That same fluid that required her to have a major surgery last August.  So that is a little concerning.  We don't know why its happening.  She is keeping a good spirit and remains upbeat and positive.  She is a fighter.  Hopefully this will be just some minor bumps in the road, but please continue to keep Shanda in your thoughts and prayers.

Larry

Sunday Morning

Well, it's time for another update. Shanda is continues to improve daily, I'm so proud of the progress she has made.  The very first night she was here was a night she would not like to repeat.  When she came back from surgery, she was very comfortable, but maybe a little too comfortable.  The epidural was too strong and the numbness in her body was climbing up to her chest, which slowed her breathing down.  They completely stopped the epidural for one hour, and thats when the hell started for Shanda.  One can understand how painful it must have been, hours out of surgery, not to have pain medication.  Poor shanda suffered the next 10 hrs while the nurses tried to get her pain under control.  Of course she didn't get any sleep and was just miserable.  Well, here we are two days later, and things are much better.  Her pain management is under control, and she is eager for the next step- "Get the dang tube out f my nose" .

Because her bowels are asleep, she is given a long tube that goes up her nose and down her throat to the stomach.  I know what you are thinking , I want one of those too.  Anyway, as you can imagine, Shanda hates this thing, her throat hurts, she can't talk, and is constantly thirsty ( no liquids until it is out).  MISERY is the best word I can come up with.  So, until her bowels wake up, that stays in.  Dr says the more she walks around, the quicker her bowels wake up and the dang tube can come out... so, she walks a TON, I love it, it is so who she is.  She gets something in her mind, and does anything to get it accomplished.  She is wearing me out with all the walking, but well worth it.  We do laps around the hospital floor 2-3 times per day, even in the middle of the night.  I love her.  We just saw the Dr and he listened to her bowels and he is hoping to pull the tube out tomorrow, so we will wait and see.

This is our third major surgery and visit to this Hospital in Spokane.  She is usually here for a couple weeks at a time, so nurses around here start to look familiar.  They all know Shanda  and remember her very well from past visits.  They just love her.  They appreciate her upbeat personality and great positive spirit.  Shanda definitely sticks out on this floor, she is by far the youngest patient, (not a lot of cancer patients at 32), she loves to talk to everybody, and people just gravitate towards her.  It has been fun to see her interactions with staff and other patients.  I'm so proud to call her my wife.

Anyway, gotta go, more will come.

Larry

Day one recovery

I'm not much of a blogger, but I'll do my best to explain what is going on. Shanda got out of surgery last night and we received the best possible news... NO CANCER FOUND!!! With all that had been going on the past six months with the severe pain, fluid build up in her abdomen, and just not a good overall feeling, we went into this surgery scared, heck, I was scared out of my mind. So to get this news, what a relief, what a miracle!!!!!! Our wonderful Dr did perform a hysterecomty ( which we expected), I can never imagine as a women how that must feel to have that done, but Shanda handled it very well. It was definitely a very difficult choice for her to make, but it had to be done. We have two beautiful girls and couldn't be happier. There was also tons of adhesions and scarring that the Dr also removed. Those adhesions, in addition to the softball size cyst on her remaining ovary, were most likey causing her severe pain and fluid build up. Most importantly, the Dr looked everywhere for any possible cancer lesions or tumors... and found nothing. YES!!!!!!!!!!!!!!!!1

She is still left with a huge incision and a long recovery, but we are so greatful for all those who kept Shanda in their prayers. We have been blessed beyond

measure. We are hoping for a speedy recovery and zero complications. My wife is amazing, and the strongest person I know, I am so proud of her. Thank you all again. I will keep you posted.

Larry

It begins...

I'm now on clear liquids and get the pleasure of starting a bowel prep. I check in at noon but will have the surgery tomorrow around 3pm. The dr will follow my same huge incision down my stomach and will cut out any tumors or anything that looks cancerous. He will drain the ascites (fluid) that has been building up again..and will send all of that off for pathology. He will also remove tons of adhesions and do a full hysterectomy this time. (I put it off as long as I could...and I am so sad about this...but has to be done now.) The Dr. will await pathology and decide if I need the Heated chemo pumped inside again or what else needs removed. The heated chemo is SO hard on the organs and abdomen. It basically creates severe burning on everything it touches and causes so much trauma. That is why it won't be used unless necessary. I know some peole had asked me why not just do it anyway.

Other than the hysterectomy, I have done this surgery 2ce before...and unfortunately KNOW all that can happen. I am trying to slow my mind from having flashbacks of all of the times I was hanging on for life after the last one. Not because of cancer, but because of surgical complications, etc. I coded the first time I had this surgery and was found in my room with no pulse by the cna trying to get my blood pressure. That was insanely scary...and I'd rather not repeat it. The last time I had this surgery, I tanked about a week in and had so many blood transfusions and ended up on a feeding tube and in serious condition for months. But whatever it is...I will do it. I'll do it 50 more times if I need to. I take one look at my girls and know I would do ANYTHING for the chance to raise them. I have to say, though...that I think I would rather NOT know what I am getting myself into. Oh well. :)

I am SO humbled and grateful for yor prayers. Thank you! Thank you! Please also pray for my doctors that they will be able to be alert, thorough, and that they will be guided to do what is needed and make sound decisions. My amazing mom will be taking care of my girls and Larry will be updating you from the hospital as it unfolds.

Surgery Delayed until Friday

The Dr. needs to move my surgery that was scheduled for tomorrow. The lady getting hers done tomorrow is in serious trouble if she waits...I remember being in the same position with the same surgeon last year. I'm frustrated because I have waited months now and am in constant pain...but I am counting my blessings that I am not the one needing the "emergency" surgery to save my life this time. Thanks again for your prayers and amazing support.

A beautiful song about the cancer experience...

It only takes a few minutes to listen to, but the words parallel my story so much. I love it! (Thanks Robin for sharing this with me)