Tuesday, December 31, 2013

Reflect

As I say good-bye to 2013 I can't help but be blown away by how different my life is.  I've decided to stay in tonight to literally reflect on not just this past year but my life in general.  One of my best friends is coming over and we'll cook, laugh and give thanks to where we each are in our own journey.  

One of my favorite sayings is "Life, You're so funny".  We make all these plans, as if we know what's best and then life happens.  I've said it before.... NEVER did I think I'd be where I am today.  However, I am happier than I've ever been.   We are in charge of how we feel, our perception on life and how we live our life.  No one has to be unhappy.  No one needs to complain about their circumstance.  We control how we move forward in the life that is given to us.

Some people think getting cancer was a gift. I don't think of cancer as a gift, it was actually horrible and I wish it never happened but it did and I am at least thankful I learned the lessons having cancer can teach. I have learned that every second of life is a gift; One that can be taken away in seconds.  I've learned that the things that a lot of people think matter (like a clean house, expensive cars and handbags) don't matter at all.  They're nice but they don't matter.  Being able to kiss our loved ones and tell them that we love them is what matters.   Actually appreciating this amazing and beautiful world we live in matters. Being with friends, laughter, holding our children... all those things matter.   One of my favorite things these days is during my run, when I'm sweating and my heart is beating fast, looking out at the water and the sky and feeling the sun on my skin and I literally feel alive....  It's incredible.

The one thing I can offer is make 2014 full of life.  Live each day.  Do things that make you happy.  Stop and enjoy.  Life goes by too quickly.

LIFE Is for LIVING.  Remember that.

Happy New Year and cheers to an amazing 2014.


Monday, December 30, 2013

Stupid Cancer


I'm on a private Facebook group for appendix cancer patients and caregivers.  It's odd because there are 100s of people on there and I have really grown to love some of these people.  We are in the same boat, we rally with each other, share our good news and give virtual hugs when there is bad news.  One woman who I have never physically met just passed away yesterday. She was the coolest chic in that group.  I've been so very upset since I heard about her passing away.  It's just not fair.  She was young, maybe mid 40s.  I find peace in knowing she is no longer suffering but I am having a rough time not being mad.  It just really stinks.

Here's a link to a big PMP/Appendix cancer lecture Kerri spoke at less than 6 weeks ago.  She comes on around 1 hour 22 minutes.

Rest in peace Kerri.


http://ow.ly/rIhYE


Friday, December 6, 2013

just a quick note...

I can not describe how amazing I feel. Thank you to all who have prayed.  It worked.  Thank you God for listening!!!

I just got back to the room and I am pretty tired so I'll be brief but Dr. Bartlett said after being in for only 15 minutes he saw enough to know I was disease free.  He still spent about an hour looking around but I am totally cancer free!!!!

I am so happy.  So, so happy.  And sleepy!  I'll update with the full description later.


This morning at 5AM





And GO SEMINOLES!


All clear on the Jenesa front....or rather middle!

We just met with Dr. Bartlett. There is no sign of mucin or disease.  Jenesa will be a very relieved lady when she wakes up!  Your prayers worked!

Ready....set...GO!

Pre-op complete, just waiting for the call back.  We are still hoping for and expecting a short uncomplicated surgery, but fingers and toes still crossed. I (mom) will update this blog when we get any news worthy information.

Thursday, December 5, 2013

Calm (ish)

Appointment with Dr. Bartlett went really well.   We reviewed the scan from July and last week and there was little to no change in the fluid in my pelvis and the level of fluid is at a "physiologic level".  He did say that occassionally what appeared to be normal fluid in a scan can be mucin and disease once inside, though he did not think that was likely, just a possibility.  He even seemed to insinuate that this surgery may not even be necessary but given my rare diagnosis and age and other factors it's the right thing to do.  All blood work and tumor markers were normal also.

Surgery will start around 730 tomorrow morning.  The incision will not be in my belly button as I had assumed it would be.  Instead it will be off to the side.  That bothered me initially but I'm over it now.  The plan is to sample and send to pathology as many samples as they see fit.  As long as nothing comes back with any cancer cells it should only be 1.5 hours (thats from incision to close)  If they do find just cancer cells but no extensive mucin or tumor, etc.  then they will open me up more, but not the full pelvis to sternum that I dread. Very, very refreshing to hear. If they have to open me up more they'll be looking around for more disease and examining my organs.  If no other disease is seen at that point they will administer HIPEC, the heated chemo solution.  He said in that circumstance the incisions would not be extensive.  Obviously if there is a lot of disease present, all bets are off and he will do what he needs to do.  I asked about the chance of me having to have a full hysterectomy and he said very unlikely. He said my uterus would definitely not be removed and even if either or both of my ovaries were compromised he could leave some sort of functioning ovarian tissue. Amazing news for me.  I do not want to go through menopause at 32.

I feel so at peace with Dr. Bartlett as my surgeon.  I trust him and his team implicitly.

I also feel realtively calm.  I've had a couple almost tearful moments but I have become quite the expert at getting my nerves in check.  For now, I'm back at the hotel, on a liquid only diet, doing some surgery prep that is "for the birds".  My parents are at whole foods getting me organic chicken broth and coconut water.  Aren't they the sweetest?!?  I'm so thankful they are here.  This is the first time I haven't had a spouse/partner by my side and they bring me comfort and make me feel not alone.

I feel so much gratitude for all of the prayers I am receiving from family, friends and even strangers.  Thank you so very much.  Please pray no cancer or cancer cell is seen.  Please pray for Dr. Bartlett and his team.

Wednesday, December 4, 2013

We made it

We are all settled into our little "hotel" right across the street from UPMC Hillman.  I am feeling all sorts of emotions from nervous, anxious, confident, scared and a whole bunch of others.  I've learned that regardless of how I feel, time will go on, Friday morning will be here soon and I'll be finished with the surgery before I know it.  I have an appointment with Dr. Bartlett tomorrow morning.  I'm looking forward to reviewing all of the most recent scans/blood work with him and talking about what our goals for the surgery are. I want to have a clear understanding what he'll be looking for and I want to express my concerns.  It's so difficult to mentally prepare for a surgery not knowing if I'll be under for just a couple of hours with no big incision or if it will be a 5 or even a 10 hour surgery with lots of cutting and heated chemo and a big incision and the DREADED NG tube.  Regardless, I'll get through it.  My mom and dad are here and I have an abundant amount of family and friends supporting me.  (thank you by the way) I am so looking forward to moving on with my life and putting this all behind me .

It was so hard leaving Liam and Ava. Not knowing if it will be 4 days or even longer really was difficult and having to expain what's going on to a 3 and almost 6 year old is really impossible.  Ava seemed to be ok with me leaving.  She's old enough to understand that I'll come back as soon as I can. Liam on the other hand was not happy about me leaving.  He's been having a harder with not seeing me as much in our new life and he was extra clingy and teary after I told him I was going on an airplane. I know he doesn't feel this way, but my fear is that he's feeling like I am abandoning him. My sweet boy, that couldn't be further from the truth.  Those two sweet angels are my biggest motivation to getting home as soon as possible.

I'll update after the appointment tomorrow morning.