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.


Tuesday, November 26, 2013

Who has two thumbs and a completely normal MRI?

This girl!! Hooray! My pelvic and abdominal MRI were all completely normal with no evidence of disease. I'm so thankful.

Monday, November 25, 2013

Scan day

I have an MRI, chest Xray and blood work today. I'm feeling almost calm. I know whatever the results are, there's nothing I can do to change it so I'm just enjoying my lazy morning with my kiddos. I hope I get the resluts quickly. 

Monday, November 18, 2013

364 days ago

Well, this has been the most unexpected, intense, whirlwind of a year.   Sitting down to even write this post is almost too overwhelming.  So, so much has happened in just 12 months.  But, I have a lot to say so here I go....
November 19, 2012,  I woke up like any other morning.  I was still recovering from the exploratory lap that I had undergone 6 days prior, but I was feeling better and relieved that the mysterious pain was finally gone for good.  Boy was I wrong! I got the call around 9 in the morning.  I just happened to answer my phone before I jumped into the shower since I recognized the number.  It was my doctor; the one who did the surgery.  Of course I immediately started rambling and talking about how great I felt and how I wasn't afraid of surgery anymore (yes, I laugh that those words came out of my mouth).  I'll never forget hearing "two tumors were found in the pathology of your appendix".  The wind was literally knocked out of me.  I couldn't breathe.  I couldn't talk.  I couldn't move.  To say I went into a panic attack would be an understatement.  She hung up with me and actually drove over to my house.  In the 3 minutes it took her to get to my house, I called my mom.  I said, "mom, you have to come over, right now... I have cancer".  Of course those words did not come out clearly and I had to say it over and over before she understood what I was saying.  Mom, I'm sorry for breaking the news that way.  That must have been the worst phone call of your life.  I really am sorry.  She and I hung up, I threw on clothes and told vika to keep the kids upstairs until I told her it was ok to come downstairs.  There was a knock on my door and my amazing doctor walked in and hugged me.  How could this happen to me?  I was in absolute shock. We sat at my dining room table and I wrote down the names of the two different cancers I had been living with.  I hadn't called Sean yet because he had a very important doctor appointment that I didn't want him to miss. My doctor told me I needed to call him, but I just couldn't say those words to him, so she did it for me.  How can I ever thank her.  First she trusted me enough to believe me that something was wrong; then she operated on me and found the cancer; then she cared enough to come over on her day off to sit with me and she took the burden of telling my husband I had cancer off of my shoulders and did it for me.  I called my dad. My sisters.  Everyone came over.  What a horrible day.
This past year has taught me so much. I am a completely different person now.  I am strong.  I am healthy. I am happy.  I am aware of every single blessing in my life.  I take nothing for granted.  I am thankful.  I am humbled.  I take joy in the simplest things in life.
It took me a while to heal physically and emotionally from the two surgeries.  I remember feeling so emotionally broken in January.  But as time went on I got stronger.  I worked so hard on myself.  Lots of therapy, lots of self discovery, lots of deep breaths.
This year had one more  event that I have yet to write about.  Though ultimately it had no direct relation to me having cancer, Sean and I have seperated and are very close to being divorced.  Out of respect for us both, I will not go into details of why.
I will say that despite the past 12 months, I can truly proclaim that I am happier then I have ever been.  I am thankful for every single day.  Not taking life for granted makes life seem so full. I was jogging the other day, watching fish fly out of the water and I literally laughed out loud every single time a fish jumped.  Then I laughed at myself for laughing at the fish.  Seriously, this is my life now. I literally find happiness in the littlest things.
There is NO way I could be where I am today without all of the amazing people in my life.  I am humbled by the amount of love and support I received this year. I still get choked up thinking about all of the kindness I received.
To my mom and dad. Thank you for putting on a brave face for me. Charna and Tila, thank you for making me laugh even though we were all scared to death.  I actually think this year may have been harder on you four then it was on me.  Thank you for loving me, sitting with me, supporting me and being strong when I wasn't able even though you were just as scared as I was.  Thank you to my family, Taryn, Larry, Don, Shaina, Alec, Bob, Larry, Ming, everyone in S. Florida and Jeff, Noelle and all of my other NY family and even my family in the US and Israel that I have never even met. To my other family, Roberta, Rachel, Pete, Elan, Mark.... thank you.  Thank you Alicia and Brad for helping me and being with me in those early days.  Brad, I could never thank you enough for getting me into see the oncologist as quickly as you did.  To all of my amazing friends, Hannah and Nick, Marc and Melissa, Todd and Jennifer, Helen and Gabe, Bryan and Nancy, Rich and Yolanda, Mark and Tamara, Scott, Tim and Taffy, Jana and James, Danielle and Marty, Shane, Mike and Tatianna, Steve, Mike and Christine, Jonna, Lisa, Christie, Stacia, John, Megan, Katie, Bill, Dave, Jody, Rusty and Mandy, Nicole, Sandra, Stephanie, Tabatha, Bev, Marci, Julie, Donna and Les, Marcie and Owen, Eddie and Donna, Jackie, Karen, Barbara, Traci, Heather, Valerie, Allison, Casey, Dottie, Stacy, Amber, Kim, Pattie, Samantha, Kim and Mark, Jessica, Ruth, Dana, Hutchinson Family, Weldon family, Gene and Wanda, Adrienne, Rabbi Weizman, Father David, Jenny, Eric and Rayna, Maria, Craig and Anna, Jeff, Barbara, Sam, Kathy and Homer, Darren, Nisha and Jin, Alex and Ashley, Jerilyn, Stephanie, Jeff and Danny, Danielle, Michelle, Marlene, Brandon and Kasey, Lisa and Sam, Liz, Rhianna, Vika, Barbara and Fran, Paige, Larry, Lily, Tobie, Karen, Jonathan, Mark everyone on facebook that has reached out to me, all of my children's friends parents that reached out to me, everyone who sent or brought me a meal after my surgery, for the prayers, flowers, cards and so many other amazing gestures of support and love.... I just can't type how thankful I am.  To my doctors... Jennifer- I am so thankful that through this we have become friends.  I think of you as the one who saved my life.  Thank you. Dr. Strosberg- you're one smart man.  I'm glad you're on my team.  Dr. Hodul, Dr. Blanco, and the other surgical oncologist I met with... thank you for taking the time to sit with me and for attempting to calm me down. Dr. Dae, Tim, Geri and Traci, thank you for listening to me and helping me process through the many emotions that come with a cancer diagnosis. Dr. Bartlett and his entire team.... I'll see you in a few weeks, but thanks in advance for being awesome;). Thank you to Merck, the company I work for, for having amazing health insurance.  Sean, I know me going through this was like you going through this and I know we did the best we could.  Thank you for being strong when I couldn't be.  Thank you.  To Ava and Liam, you two gave me strength and the will to fight and be strong.  You both are my entire world and I am so fortunate to be your mom.  I'm sure I missed some people but please know that nothing went unnoticed.  I felt every prayer.  There is no way I could have emotionally survived this year without the amazing people in my life. Thank you so much.

Monday, October 28, 2013

Anxiety is Useless

Tonight has been quite eventful! My sweet Ava suddenly got very sick and she and I spent a few hours at the urgent care sorting out her 104.3 degree fever and vomiting/shivering episodes.  There really is nothing more frightening than seeing your child so sick.   She's been so healthy that I was caught off guard tonight.  So far she's tested negative for flu, so we'll watch and monitor her closely.  I mention this because I am amazingly calm. Don't get me wrong I'm really, really worried and would like to stay awake all night watching her breathe but I seem to have learned a lesson about useless anxiety.  The old me would be totally freaking out.  I'd be googling things from menigitis to H1N1 to a rare tropical disease she "could have" picked up at the beach this past weekend.  For now, I'll pray for a fast recovery and nurse her back to feeling good.




This brings me to another similar subject....... I am in a little battle with useless anxiety over surgery on December 6th.  At times, I momentarily freak out about the "what ifs" with the next MRI or what they may see once they look inside my abdomen.  I definitely know that worrying does nothing but cause useless anxiety over things that may or may not be true.   So for the most part, I'm doing ok.  I get a little choked up thinking about enduring another surgery, regardless if it's small or huge.  I really just want a break. But I'm so thanful that this is my situation.  I could have it so much worse and I know that whatever is to come I can handle it and I will overcome and continue living a healthy and happy life.

Friday, October 18, 2013

Hi, Remember Me?

I know I have been missing in action.  I've almost posted many times but there has been so much going on and I felt like it wasn't time.  In fact, this is just a quick update regarding some health stuff with me because as you know, I believe in the power of prayer and would love to get those prayers flowing :)  I promise to completely update soon.

I had written before that there was talk about doing an exploratory laparoscopy sometime near 1 year after diagnosis/last surgery.  Well.... somehow it has almost been a year since my life turned completely upside down and in about 6 weeks, I'll be celebrating my one year anniversary of the big operation.  I can't believe tomorrow will be 11 months since I found out I had cancer. It is so crazy to me that 11 months ago my life was SO different. Look out for that 12 month post :)  Anyway, I really hadn't thought much about the next steps until summer was ending.... then I got to thinking.... "I should probably make some plans for my next scan and see if that surgery is going to happen." I reached out to Dr. Loggie (in Omaha) and began making plans to go back out there for an MRI and the surgery the first week of December.  However, they informed me that he would not be doing my surgery, that one of his fellows would.  I am absolutely not cool with a non specialist operating on me. Isn't that the point of me traveling out of state?  So, I called Dr. Bartlett's office at UPMC.  I have felt very comfortable with him since I met him in May. I had to send up my MRI from July and wait for them to review it.  I received a call from Heather, Dr. B's PA earlier this week.  I am quite foggy from the conversation because I just wasn't expecting to hear what I heard.  She said they do feel I should proceed with the surgery and that they noticed and read about the fluid in my pelvis and that it could be concerning.  What???  Dr. Loggie said it was a perfectly normal MRI.  This is why this stupid disease is so STUPID!!! It is extremely hard to read any type of scan in the early stages of the disease.  Obviously if I was full of tumors it would be noticable (and I am SO thankful I am not) but that doesn't mean that there aren't itsy bitsy cancer cells creeping around in my abdomen.  AHHHHH. I literally wanted to curl into a ball and pout.  Which I did end up doing most of the afternoon.  So, we spoke about dates and talked about what I'd want if cancer was seen in the surgery.   IF cancer is seen, they will immediately proceed with the cytoreduction and HIPEC.  This is the BIG surgery where they cut from sternum to pelvis and it is not an easy recovery.  Most of the conversation is a blurr.  I think I checked out when I heard her say there could be a concern with the last scan. I will be having another MRI in November along with many different blood tests and a chest x-ray.  I will be flying up to PA on 12/4/13; pre op appointment is on 12/5 and surgery is scheduled for Friday morning 12/6/13.

So specific pray requests..... 1. Please pray for a clean scan in November. I want to go into this surgery confident that I am cancer free.  2. Please pray that the surgery has no complications and of course that there is no cancer anywhere in my body. 3. Please pray that I can keep a positive attitude and remain optimistic.

I'm actually feeling really good emotionally and physically. I have been working hard to stay healthy in every aspect of my life.  I have been doing a lot of hot yoga.  I really love it.  I have been jogging and lifting weights and I begin playing in a coed soccer league next week. That should be intersting since I haven't played in about 8 years. My goal is to be as fit as I can be going into surgery in December.

To say my life has been hectic would be an understatement but I still feel beyond blessed and I am so happy. I have the best support group in the world. My family is truly amazing.  I have THE best friends.  And I never could show how thankful I am to have been supported so much throughout this journey.

One more thing...... I have met many people that have been affected by this rare cancer. (Mostly through facebook.)  There is one family in particular that is going through more than anyone should ever go through and they are only 27 years old.  Nick and Alyssa and their beautiful baby girl.  Nick was diagnosed before me and he has a more aggressive pathology than I have. He has had a lot of treatment and he has the most amazing attitude and faith in God.  Their family could use extra prayers right now.  Here's a link to their blog.

  http://teammagnotti.org/please-exit-chemo-stage-left/


Thank-you again and again and again.

Monday, September 9, 2013

Checking in


Hi :)  I hope all is well in "your" world.  My world has been hectic. I'm trying to s-l-o-w things down a bit.  Work is Busy. We are in back to school mode. Add everyday life and some other things in the mix and I feel like there are just not enough hours in the day.   And to complicate things I just started an online integrative nutrition course.  I'm VERY excited about it.  The course covers the fundamentals of nutrition but it's main concentration is living a healthy life..... starting with the love in your life, the passion in your life, your work, exercise and spirituality.  I will definitely write about this year long journey that I am beginning.  I am thrilled to learn more about living a truly healthy life.

Be Well!

Tuesday, August 20, 2013

Busy Bees


Hello:)  Things have been a bit crazy lately.  I do intend to continue to write but there will probably be larger gaps between my posts for a bit.  All is good with my health though.

Today was Ava's first day of kindergarten.  She did great!








Sunday, August 4, 2013

Love Your Life

Life is so amazing.  I was with two of my girlfriends this weekend on a little girls getaway.  As we were laughing in a cab, windows down, wind blowing wildly through our hair, music blasting I couldn't help but be so thankful for my life.  I just looked at the city's skyline, the bright moon in the dark sky and thought, "life is good".  It's the little things that sometimes get taken for granted that really make me realize how amazing the world and my life really is.  Just the smell of the ocean air and the sound of crashing waves send peace through my veins and this weekend I was reminded that happiness can be found in the simplest things in life.



Monday, July 15, 2013

Cancer Free

 First of all, lets all high five each other with the good news!!!

And speaking of good news here's the details from today with a little bit of older, other opinions mixed in.  However, before I begin, remember this cancer is not straightforward.  I'm not sure any cancer is really straight forward, I mean they all suck but having two different types of primary cancers in an organ as small as an appendix and having one of those being very rare and difficult to treat has been quite a whirlwind.  I am just starting to feel confident in my understanding of these two different diseases.

Today started off early with an MRI of my abdomen and pelvis, with and without contrast. The MRI itself wasn't bad, it was the feeling of contrast rushing into my veins that made me uncomfortable.  Anyway we had about an hour to run and grab breakfast and then we had our appointment with Holly and Dr. Loggie.  We spoke with Holly for a while, going over basic health information and also about what had happened from the beginning up until now.  She seemed very optimist with my case.  Dr. Loggie came in next.  Most of the conversation was VERY high science but here are the highlights:

-I do not have PMP.  (this has caused a great deal of confusion for us.  These tumors rupture the appendix seeding the abdomen with cancer cells which grow and change and cause very bad things... also know as PMP)  I have a chance of developing PMP but I currently do not have it.
- This means I am cancer free.  My scans are perfectly healthy, my blood work is normal, I feel great and there is literally no signs of cancer.  I'm not sure if that means I'm in remission or what the correct term is but I'm going to go with cancer free.
- This bullet point is very difficult to explain but I'm going to do my best.  With mucinous neoplasms there is a very wide spectrum of pathology ranging from very low grade to super scary high grade.  I am on the lowest side of the spectrum and it seems it was caught early due to the carcinoid. NOTE: the pathology and cells can mutate and change at any given time.  This is unlikely to happen in my case but not out of the question.  The way Dr. Loggie explained it to me is that patients in my exact situation have a 25% chance of reoccurrence, aka the cancer reoccurring and invasive treatment being necessary.  He had scientific information to back up this information.  This means that 75% of patients with a low grade mucinous neoplasm with rupture but with acellular mucin and no cancer cells being found in the pathology of the mucin taken from the abdomen may never have a reoccurrence.  He also agreed with Dr. Bartlett and Dr. Sardi that if I am monitored closely with scans and bloodwork that it is highly unlikely that if this should return it would be found at an inoperable state. 
- He did an exam and found nothing alarming or abnormal which is reassuring because there is an area in my scar that has knotted up and he put my mind at ease that it is just part of the scar healing. 
-Future testing- I will have MRI in 6 months.  I need to choose who I want to follow me.  If it is Dr. Loggie I will have to fly to Nebraska for all future testing.  He works directly with a specially trained radiologist when reading the scans and I get the results immediately.  I can also get the MRI in Tampa and send them to Dr Bartlett or I can continue to get CAT scans and send those to Dr. Sardi or Dr. Sugarbaker.  But CAT scans have a lot of radiation and I am only 32 so ideally I would like to stick with MRIs.  I will need a scan every 6 months for a while and eventually we will move to once a year  An exploratory LAP is a strong possibility sometime between 12 and 18 months from diagnosis.  The thought behind this is that if a cancerous cells escaped some kind of growth would be visible at that time.  This is a bit more invasive that a traditional LAP surgery but not nearly as bad as what I had done in December.  He was impressed with how long my incision is.
-Carcinoid.... oh ya, that thing.  This situation is in my mind but not nearly as much as the mucinous tumor.  Don't get me wrong, I know the carcinoid could come back but I feel confident in my Dr.'s in Tampa and what my surgeon in Tampa said about it not coming back. However, Both Dr. Loggie and Dr. Sardi mentioned that a carcinoid cell could have leaked out too meaning the carcinoid could reoccur inside of my peritoneal cavity.   This only adds to the need of close monitoring.

What I take from all of this.  I clearly could still have a lot to worry about.  There is a 25% chance I could have a reoccurrence and I am dealing with two different types of cancer not coming back. BUT, couldn't we all live with worry about disease and other things that could cause us harm. I wouldn't advise anyone to worry about getting cancer or diabetes, having a heart attack or getting struck by lightning.  These are things that we have limited control over. Yes I am at an increased risk of having cancer again but to spend my life worrying about that is just exhausting.  It will take a lot of work and I'm sure I'll have moments of anxiety but I choose to live a full life.  I choose to live a healthy life.  Our health isn't as simple as an annual physical and a jog every once in a while.  Our body and mind need total and complete health. This means what we put in our body, on our body, in our thoughts and also exercise, family and friends. 

Thank you again for the prayers and support.  I am a lucky duck.


Sunday, July 14, 2013

Another big day tomorrow

Sean and I will be meeting with Dr Loggie tomorrow after an MRI. He will discuss my blood test results, MRI results and the results of the special testing he had done on my pathology slides.

Any prayers, positive thoughts, Etc. you can said my way is very much appreciated.

Sunday, July 7, 2013

Goals and Gratitude


I watched two documentaries this weekend.   Forks over knifes and Happy.  I definitely recommend both.  Watching Happy was so powerful.  It is amazing how people with what we would consider so little are SO happy and I look around at so many people who have SO much and are not nearly as happy as the people with less.  I took a lot away from the film but what I want to concentrate on this week is the act of unsolicited kindness and finding things I am passionate about, espciallay things that challange me.

Kindness:  Human beings thrive on doing things for others. We all know how good it feels to do something for someone, especially when they are not expecting it.  It can be as simple as holding a door for a stranger or buying coffee for the person behind you at Starbucks ( or your local organic coffee shop :) The options are endless and I plan on doing more and more kind things for friends and strangers.

Passion:  Please don't get me wrong, I have plenty in my life that I am passionate about, especially when it comes to my family but I know I am missing something that challanges me.  I grew up playing competitive soccer.  It was my life.  I loved practicing. I love getting better and I loved challenging myself.  I loved the feeling of walking off of the field knowing I played my heart out.  As I have reflected on my life these past few months I am realizing that maybe I lost a part of myself when I stopped playing.  When something is such a big part of your life and then suddenly it is not, you do loose a part of yourself.  And I never really replaced it.  Since I stopped playing I have remained active but nothing has come close to the committment I had when soccer was in my life. I'm not sure I'm going to reactivate my soccer career but I need to find something.  I have been taking yoga classes and I really like it.  I am thinking about coaching soccer again. I really loved that too  I just know that I need something in my life that challanges me and that I am passionate about.

And lastly, giving thanks to what we have is something that should be a part of all of our lives.  Seriously, I know that I am extremely blessed and even in my doom and gloom moments, just concentrating on all that is good can really help.  I have started a gratitude journal and plan on wrting in it often, even if it is a little list of what was good that day.





Tuesday, July 2, 2013

Just Be

I have learned that I have been living a life centered around doing.  I have done a great job at doing, doing, doing.  Whether it was work or sports or social or anything really.... most of my life I have been a people pleaser and a "just do it" kind of gal.  My new outlook on life, on my life, is to just be.  I want to feel and trust what I want in every aspect of my life.  There is no right thing to do, there's only what feels right.  This is a very hard habit to break. VERY HARD. I find myself having to talk myself into it being ok to do or not do something.  It sounds so silly but I've spent my life doing a lot of things that I felt I had to do, or that I should do.   I know this will aide in my quest for optimal health. Our mind has so much control over what goes on inside of our body and I struggle with this area a lot.

I've been dealing with a lot of anxiety over my illness.  Though I believe I am well and healthier that I've ever been, I know there's that chance of the ugly beast coming back.  I will overcome these fears and get to a point where I have a special place in my mind for these fears and I will tuck them away and live my life with no fear.

Our bodies have an incredible way to heal from the inside out.



Let your faith be bigger than your fear #quotes #quote #fear #faith







P.S. Isn't my blog Pretty :)




Tuesday, June 25, 2013

Makeover time

This blog needs a makeover. I have wanted it to be "prettier" for a while but I am super clueless when it comes to most things computer.  I am hoping to unveil the new blog soon.  Smittenblogdesigns is designing it and I am super excited.


Friday, June 14, 2013

Invision me well

Hello everyone.  I had a great week and I'm very excited to spend the weekend with my family.  I had another session this week to work on my subconscience thoughts.  I feel like I am getting so much out of the time I spend there.  Our whole subconscience being is created throughout our life, including infancy and possible in the womb.  I know some people may be skeptical but every experience in our life shapes us.
Anyway, one thing that Traci and I discussed (that is the woman's name who is working with me) is the power of intention.  I was telling her how incredibly blessed I have been having so many people praying for me.  One suggestion she made is that we all should invision me well and totally healthy- from the tips of my toes all the way up to the top of my head :) I hope you don't mind me telling you what to think :) but if you are thinking about me or praying for me, please think of me in total health not battling cancer.  Please thank God or whoever you pray to for the healing that has occured in my body.  This is a practice that we all can do within ourselves.  If there is something that you are concerned about, instead of spending powerful energy thinking about the fear, concentrate deeply on your desire.  For example, if you are worried about loosing your job, the worst thing you can do is ruminate on how your life is going to be if you are unemployed and how you are doomed and how you'll never survive.  At this point you haven't even lost your job yet.  Instead, meditate on the truth that no matter what you will be ok. That you are capable of anything. That you can survive and that all is perfect today.
Thank you again for all of the support. I am forever grateful.

Monday, June 10, 2013

Omaha here we come

I spoke with Holly at Dr. Loggie's office and they do want to see me.  Remember these specialist have to " accept" you as a patient. Weird but whatever. Sean and I feel like meeting with one more well respected pmp specialist will hopefully give us the confidence it takes to wait and watch.
I've had a little bit of butterflies since my phone call but that aside I've been feeling so great; physically and emotionally. I feel like I am cured now.  I feel like I am total health and cancer can not thrive in me.
The trip is about one month from now.

Saturday, June 8, 2013

What I've been doing.....

A while back I posted about the changes I have made in my lifestyle along with the changes we have made as a family.  I am proud to say that we are going strong with our new lifestyle and we are all feeling great. Don't get me wrong, occasionally it is difficult to maintain, like when traveling or on the road, but overall it has been a smooth transition and one that is WAY worth it.
Lets recap:
Food- It's all about fresh, organic goodness people!  Today I am at about a 90% vegetarian diet (all organic) with only 10% animal protein (all grass-fed and finished, organic, wild, etc) I try to wheatgrass everyday.  I try to juice everyday.  My favorite is carrot, cucumber, celery, lemon.  YUM!  No sugar. Not a bit unless it's from a fruit.  That means no cookies, cake, chocolate, etc ( I miss that sometimes )  And no alcohol.  I don't really miss it too much.  Maybe I miss an occassional glass of red wine, but I am certain staying away from all sugar is more important than a glass of wine.

My day starts with an amazing, homemade smoothie.  Ingredients include one organic cucumber, organic kale and spinach, ice, blue bonnet protein powder, raw cacao nibs, greens powder, an avocado, some blueberries and maybe a splash of almond milk or coconut milk if it needs to be thinned.  I do alter the ingredients occasionally but that one is my favorite.  Sean also drinks this in the morning and I think he may be as addicted to it as I am. After drinking it I feel great.
Dinner is typically something vegetarian.  I love roasting sweet potatoes.  I love raw-getti which is zuccinni pasta.  We eat "raw" stir frys, lots of different, yummy recipes. I also bough a dehydrator and I am addicted to veggie burgers.  They are 100% made from organic veggies, nuts and flax and are considered raw.  So good!!!

I snack all the time on nuts, hummus and carrots, and many other veggies. My favorite places to eat while I'm working are Abbey's on North Dale Mabry, Oxford Exchange, Boca and my absolute favorite is Rawk Star Cafe in Palm Harbor. Don't get me started on how awesome that place is!  Everything there is raw, organic and delicious.

Supplements
I take a lot of supplements.  A lot of what I have done with my diet (and my family's diet) along with the supplements I take has been from working with Alex Poptodorova.  He is so smart.  I've been on his protocol for about 6 months and I am seriously healthy.  In fact, I was just told by a doctor that I had one of the healthiest "guts" he's seen.  (more about that later in the post) Anyway, I take a lot of supplements.  I concentrate on immune boosting, probiotics and others.

Exercise and products.
I need to exercise more.  After I hurt my knee skiing in March I took a little time off but I'm back at it.  I  do Yoga on Monday nights, weights 2 times a week and some sort of fun cardio once or twice a week. I still use as natural or organic products as possible.  All cleaning products are Meyers.  Organic laundry detergent, pest control company, shampoo, conditioner, makeup, lotion, tooth paste, tampons, cookware, dry cleaner, diapers (for Liam :).  Everything is as natural as possible. I actually just went off the deep end this week and ordered an organic mattress for Ava and Liam.  Apparently a typical matress is laced with so many chemicals that we spend half of our life breathing that in.  Holy cow!!!  Sean and I are shopping for our new, organic mattress now.  I may have also purchased new organic cotton sheets for the kids too.  And I'm considering new car seats for them too since the ones they sit in currently have chemicals in them too and when you factor in the Florida heat....... OMG it makes me cringe just thinking about it.

Before I write about the next part a quick thought. I believe in Western medicine.  It is so important.  BUT, I also believe strongly in Eastern medicine and since there isn't much Western medicine can do for me right now I am really getting into Eastern healing.   I have spoken with a medical intuitive.  That was really interesting.  I have seen a Dr. who does muscle testing to check what systems in your body are weak. He is who told me my "gut" is really strong.  Did you know a lot of your immune system is in your digestive tract? I have found that my hormone levels are a bit off (like seretonin, adrenal, cortisol) so I am taking supplements for that.  I have been sleeping much better since I started taking those new supplements.  I have also seen a therapist that uses muscle testing to tap into your sub conscience.  WOW!  That was really intense.  I am really looking forward to working more with her.  I also go to acupuncture and I have been getting a massage twice a month.

I really am so passionate about living a healthy lifestyle. It isn't just about eating salads and exercising when you can. We live in a toxic world. There are chemicals everywhere.  So much of what people eat is processed and so far from what we were made to eat.  I am certain that our body is not meant to thrive on oreos and doritos.  We need as much of a plant based diet as possible.  (i.e. fruits and vegetables)  It is hard to change habits but once you do you feel better than you've ever felt. I could talk for hours about how important it is to take care of your body.  Why does our culture wait until something is wrong to make a change (yes, I am guilty of that)  I wish SO much I had lived this way prior to my diagnosis.  Why do many people believe there will be a pill to fix a problem should it arise?  I'll be the first to tell you that isn't so.  I had a serious problem arise and there is no pill or reasonable treatment that can make it go away. I am healing through food, exercise and emotional and spiritual healing.

All of the changes I made couldn't have been possible without the support of my husband, Sean. He supports me and believes in this lifestyle too.  A big thank you to Alex and Ashley Poptodorova, Sam, my sister Charna, my sister-in-law Nicole and all of the other people who have encouraged me on this natural, organic path I am now living and LOVING.


Thursday, June 6, 2013

Hi.  I'm still here, chugging away. Life is good.  Busy, but good.  I got to ride out tropical storm Andrea  at home today with the kids.   The media alway scares me about the impending doom of whatever storm is here and then when it comes through it's not nearly as bad as expected. There were some pretty impressive winds and a lot of rain so I was happy not to be out driving.

Yesterday Sean and I met with my local oncologist.  We felt like we needed to bring him up to speed with the appointments we had with Dr. Bartlett and Dr. Sardi.  I can't begin to describe what a unique and frustrating situation I have on my hands.  It is truly medically unheard of to have two different cancerous tumors in the appendix so NO ONE believes me when I tell them, including my local oncologist. He still is doubting that I really had a mucinous neoplasm. This is after 3 different pathology departments reviewed my pathology slides, two of which are from cancer institues and all 3 agree that there were two seperate, malignant tumors.  I wish he was right but I don't believe he is.  I've met face to face with two mucinous specialist, sent my files to 2 other mucinous specialist and all 4 confirm that yes I have a very rare situation on my hands.  Yes there were two different tumors.  Anyway, he is willing to run the tests that the specialist say I need on the schedule they are recommending so I will have my tumor marker blood work 3 months post scans (so august 1st-ish) and then scans the end of October. It is really hard to be in a situation where not much is known and there is no standard protocol.  Again, the good news is I've been given an excellent prognosis and I truly believe and know I will live a long life.  I am healthier than I have ever been, I'm feeling good and I am optimistic that there are no living cancer cells anywhere in my body.

So, what have we been up to?  We had a wonderful Memorial Day weekend.  We were in Orlando and had such a fun family weekend by the pool and finished off with an amazing fireworks display.  Ava lost her first tooth on her last day of VPK.  I was excited to welcome the tooth fairy with her. Such fun. She's excited for her camps and we are hoping to have a family vacation at some point this summer.  Liam is doing well too.  He's growing like a weed and he's blossoming so much.  He's quite the talker and has a great personality.  Sean and I are headed to Atlantis later this summer.  Neither of us have been and we are really looking forward to a relaxing getaway.  That's it for now. I should hear back from Dr. Loggie soon. (the last specialist I sent my stuff to)  I'll update with their official recommendation.

Sunday, May 19, 2013

6 months ago...

November 19th, 2012 was a day that I'll never forget.  I can not believe it was 6 months ago.  It seems like much longer.  I remember many vivid moments of that day which all bring chills down my spine and tears to my eyes.

I really can't believe it's been half of a year.  So much as changed.  Life has been challenging.  Every aspect of my life has been challenging and has changed.  I like to think that those changes have all been for the better.  Well, maybe except for the whole removing part of my colon part, but then again that was something that needed to be done to get rid of the cancer so I suppose that was for the better too.

I now have a 5 inch scar down my abdomen along with 2 other tiny scars.  Those are the only phyiscal signs that I've been through this nightmare.  Unfortunately, if I could see my thoughts/mind/brain there would be a lot more scars there.  Even though days are getting "easier" I still wonder about my health and how long I'll have it.  I am still overwhelmed by having TWO different cancers, one of which is so very rare and difficult to cure. I think "why me" all of the time.  Why did this happen to me?  I really do have everything I ever dreamed of and more really. But I also know "why not me".  Cancer doesn't care, it just wants to destroy so why not me?  At th same time I am starting to feel more confident that I will be around for a very long time, even if that means having the cancer come back and me having to endure the cytoreduction and HIPEC surgery.  So I also think "why not me"?  Why wouldn't I be one of the ones to overcome this?  I am young, strong, stubborn healthy otherwise and very adamant about being here so why not let it be me to beat this thing.

I am workiing on the acceptance part of grieving.  I am trying to completely accept that this diagnosis can never be undone.  I still wish it had never happened and I'd like to get to a place where I think, "yes it happened, yes I'm ok and yes I'm going to be ok no matter what happens".  I'm still a ways a way from that but I am working on it.

I'm trying to blog more often, but some nights I just don't know what to write.  (ironically, I had this whole blog planned out and then I realized it was the 6 month anniversary of my diagnosis so I'll have to write that one out later)  I am so thankful for anyone who has read this blog and prayed for me.  I can't begin to describe how humbled I am or how much it has helped me to know there are many people who care.  It has made me feel less alone.  In fact, when looking at the viewing history.... there have been 5082 blog views.  And not just from the USA but many countries including, Germany, Canada, Romania, Columbia, Ukraine, Australia, United Kingdom, Macedonia, Greece, Poland and a handful of others.  Again, thank-you.

If there are breaks in the blog posts, please check back in.  Especially in October when I'll be having my next scans.  I'll need lots and lots of prayers.

Sunday, May 12, 2013

Mother's Day

Happy Mother's Day to all of the mommies out there, especially my mom, Rea. You are very loved and appreciated. Thank-you for all you have done and still do!!

This weekend has been sort of yucky because I have not been feeling well. Thankfully I feel certain it is not cancer related. Unfortunately, I'm pretty sure I had one of those nasty stomach bugs. You know, fever, chills and GI troubles :( Friday was my only really bad day. I felt much better Saturday with just a little underlying nausea continuing still.

I was still able to enjoy Mother's Day weekend. Sean was Mr. mom and pretty much did everything.

Tomorrow is 6 months since my first surgery. It's amazing to think that 6 months ago I had no clue that I had cancer. It seems like it was much longer ago.

Thursday, May 9, 2013

Best day

I strongly recommend taking a vacation day and pulling your kid or kids out of school to spend some serious quality time together.  Today Ava and I played hookie.  There's part of my day I have to keep a surprise because it is part of our Father's Day presents, but we had a fun lunch today, we painted pottery in Hyde Park, she was treated to frozen yogurt with rainbow sprinkles and then we ran around a bit and headed home.  She was on cloud nine. She kept giggling, telling me how much she loves me and constantly had a smile on her face.
I'm excited to tell you about the surprise. (No I am not pregnant :)

I also spoke with Dr. loggie's nurse practioner this afternoon. He is another Doctor that only specializes in peritoneal malignancies. She and I went over my specifics and talked for a bit.  I need to send her my stuff, but she sounded similar to Dr. Bartlett. An MRI at my one year anniversary and a laparoscopic surgery "looksie" to see if there's any disease progression. They do not believe in operating unless there is clearly disease and they feel like one year post diagnosis would show if something was there.  If something is seen, then the big ole surgery would be scheduled and if nothing is seen then MRI's every 6-12 months indefinitely. I need to start with sending them my stuff, then I'll probably pay them a visit in Omaha, Nebraska and then I will have my choice of which specialist to follow me.

Sunday, May 5, 2013

Just trying to process everything

What I want to do is lay everything out on paper (or the blog) so I can clearly articulate everything from the last week. However, my head is spinning a bit.  I need to make some pro and con lists and lists of what is agreed upon with the multiple specialist and what is different. It will all have to wait until I feel up to it.
In a gist I have Dr. Hodul from Moffitt telling me to go live my life and monitor closely, Dr. Sugarbaker telling me to be monitored closely, Dr. Bartlett teling me to be monitored closely, Dr. Sardi telling me he would at least do a lap if not go for the curative HIPEC and I spoke with a GYN oncologist out in California ( he is a cousin of a family friend) and after telling him my situation he unofficially recommended HIPEC.  It is SO tricky because on scans and through blood work I have no signs of disease HOWEVER when I was opened up in December Dr. Hodul did see 1-2 mm deposits of mucin in my pelvis and on my mesentery which is technically signs of disease, even though it was acellular.  The chance of the disease progressing is very high, even though it could take years, it is highly likely to progresss HOWEVER it isn't guaranteed that it will for sure progress, meaning it may never change. I am healthy, I eat super clean.... as close to an anti cancer diet as possible and I exercise, don't smoke, etc.  BUT how do I choose.... it would be MUCH easier to get everything before the disease progressed so the aggressive thing to do is surgery now.  BUT I only have one dr officially telling me this is what I should do.  I'm trying to figure out if I can live and wait. I just wish I had a crystal ball and could see what I should do.  I am so young.  32.  I have a 2 year old and a 5 year old.  I have a husband and family and friends that want me around for a while and I want to live to be a really old lady!! All the doctors gave me an excellent progosis; even with waiting and watching.  Sometimes (rarely) it is nice and easy to pretend that I'm all good.  But most of the time, somewhere in my mind I am wondering if I'm ok.

Friday, May 3, 2013

Never easy

Today's appointment was very different than yesterday's appointment. Boo. I have a big decision to make. I plan on writing it all out once I get home and am not typing on my phone. Please pray that I make the best decision. Luckily I have a little time to make it.

Thursday, May 2, 2013

Things are looking up

Appointment with Dr Bartlett went very well:) he gave me a very good prognosis and does not recommend surgery now. More details to come

Sunday, April 28, 2013

exhale

This has been a really good weekend.  For the first time in a while, I feel like I'm ok.  Living while knowing there's a deadly disease inside of you is SO hard.  I think hearing that there is no evidence of any disease gave me a confidence boost. And what good timing..... it is nice to go into these appointments without any pressure or urgent desicion making.  (last time I had consultations I was being told you need surgery and you need it now)
I am praying that these appointments give me clarity and hope.  My situation is so unique and I feel a tremendous amount of pressure to make the best decision.  My life literally depends on it. I never, not in a million years or my lifetime did I think I'd be in this situation.  It's so surreal.
Today Sean, my mom and I met up with the local appendix cancer/PMP group.  We had lunch at oxford exchange.  I was really looking forward to seeing everyone.  They are a group of people who really offer me a lot of support and information.  There were 3 of us with this stupid cancer and there were 5 caregivers.  One of our local PMP'ers wasn't feeling well so she couldn't make it and another caregiver couldn't make it because her husband passed away yesterday.  He had appendix cancer and was young too, probably in his 40s.  Ugggghhhhh!

Thank you again and again and again for your prayers.  I am humbled that I have so many people praying for me and thinking of me.  :)

Friday, April 26, 2013

Thank God!

Finally!!!  Scan was completely normal, no evidence of any recurrence!!  I am absolutely over-whelmed.  I can't even begin to to describe the relief or flood of emotion I am experiencing.  I don't think I've ever been this relieved.

Thursday, April 25, 2013

Still waiting

I'm still waiting for the scan results. I did text with my dr this morning and he had been out of town. He got back this morning and told me he'd get back to me in the afternoon.
I'm pretty anxious. Part of me feels confident that there will be good news but of course I'm terrified that something unexpected could show up.
I will update again once I know.
Thank you for your continued prayers. They do help!

Wednesday, April 24, 2013

Already finished

It's 8:35 and I'm already finished with the scan.   It wasn't too bad. The barium drinks were pretty gross and the iodine makes you feel funny but all in all I'm feeling fine.
Thank you very much for all of your prayers. I'll update again as soon as I hear something.

Sunday, April 21, 2013

Prayer time

I officially have a CT scan scheduled for Wednesday at 8 AM. I start drinking the contrast juice at 6 AM.... Drink some more at 7AM and then the photo shoot aka scan is at 8. I have a work meeting in Orlando Wednesday afternoon until Thursday afternoon so hopefully the contrast drink doesn't make me feel yucky.
PLEASE pray that there is NO evidence of disease.

Thursday, April 18, 2013

Sugarbaker video

http://m.youtube.com/watch?feature=m-ch-fea&v=QP7l5PlV2Zg#


I was sent this video from a group I'm a member of (pmp pals).  The video was recorded very recently at some pmp conference. I've seen a few other videos of other pmp specialist from this conference, but I have been waiting for this one.
Dr Sugarbaker's advice for me was to wait and watch closely but after watching the clip I feel like he contradicts his advice. He said that the best long term survival can be expected when the CRS and HIPEC is done as early as possible. At least that's what I heard.
Only 12 days until we meet with Dr. Bartlett and then we meet with Dr Sardi. I'm so anxious to get some expert answers and hopefully some clarity.



Monday, April 15, 2013

Moffitt

I contacted Moffitt today, specifically Dr Hoduls office. I've been having this feeling or mild cramp at the bottom of my rib cage on the right. It's been going on for a while but I'm noticing it more frequently now. I've been toying around with who to call, as in what Dr. I went with Moffitt since there's little my medical oncologist can do and Dr Hodul did just operate on me 4 months and 5 days ago:) the sensation is hard to describe. It's not painful. Really, it feels like a cramp but its been in the exact same spot. After speaking with Melissa (Dr. hodul's PA) she doesn't think it's a blockage (either do I) she doesn't think it's a leak (thank goodness because that would be a bummer) it could be as simple as gas but she said the next step is probably scans (as in a CT scan) I did tell her I was heading up to meet with some mucinous specialist in a couple weeks and she felt that the scans could wait until then. I'm just so scared. What if its cancer? I think my liver, pancreas, and other important organs are right where the cramping is.  I really need those to be ok.
I'm in this constant battle with my mind. Part of me wants to curl in a ball and cry and spend my days eating ice cream(which I don't even eat anymore) and just feel sorry for myself BUT a big part of me what's to enjoy life!!!! I want to be carefree and be able to stop and smell the roses without a huge wasp (aka cancer) ruining my moments of happiness.
I'm praying these appointments on May 2nd and May 3rd provide me with clarity and more confidence.

Monday, April 8, 2013

birthday

This weekend we celebrated my birthday at Disney and then with a family dinner at Bern's.  The weekend was a bit emotional for me.  I kept myself together for the most part though.
Theme parks seem to be a trigger for me. I think it's because there's so many people in one place and I feel like the only unlucky one with mucinous appendix cancer.  My rational mind knows there are many sick people there with other horrible diseases but that's just how my mind reacts. We did have a great time.  Ava is proving to be a thrill seeker.  She loves fast rides!!  And Liam loved riding the train and It's a Small World.
We headed home on Sunday morning for an afternoon by the pool.  It was nice to relax, nap and spend time with the 4 of us.
We had plans to go to Berns with the kids, my parents, Charna and Sean's parents.  Sean's parents couldn't make it at the last minute but when we walked into the restaurant Tila was there waiting to surprise me.  She did. I had no idea she was flying in.  It was nice to have the family together.
However, on the way to dinner we received a text from a good friend that his wife (also a friend) was diagnosed with stomach cancer and had just undergone surgery to remove the cancer and part of her stomach. Then Liam spiked a fever right when we got to Berns so Sean had to run out an grab some Motrin. (his temp was 102.5 this morning :(  THEN, during dinner Charna received a text that one of her good friends who had been battling bone cancer had passed away.  He was only 33 years old.  Needless to say I was upset.  Again, I tried to enjoy myself and did have a nice time.  I just hate cancer. I feel like it's trying to destroy the world.  My friend with the stomach cancer is young!  Justin was WAY to young to die.  He was a good person. It's just not fair. And to top it off, my very dear friend's father passed away yesterday too.  He had stage 4 lung cancer.  :(
I try to remain positive. I have a slow growing, low grade cancer that was caught early.  I know both of my surgeons said that I looked healthy (when they were operating in Nov. and Dec.)  It's just so hard when CANCER seems like it's everywhere.  I want to move to a farm in the middle of nowhere and eat carrots and tomatoes and get away from all of the smog and craziness.

Wednesday, April 3, 2013

Appointments are Set!!

I STILL don't have Dr. Bartlett's recommendation but I went ahead and set up appointments with Dr. Sardi and Dr. Bartlett on May 2 and  May 3.  A quick trip up to Pittsburg and Baltimore to hopefully get some peace of mind. My goal with these two appointments is to 1. have a CLEAR plan, 2. Get a better understanding of this disease 3. have a good feeling about one of these two Dr.s and ask one of them to officially become my doctor and have them follow me and my scans/bloodwork, etc.

I'm obviously hoping that surgery isn't necessary but I want to know that not doing surgery isn't a huge risk.  I just want to feel like I've done everything in my power to beat this stupid cancer and today I'm still unsure.  There are so many unknowns and I hate depending on the internet for answers.

I've been so blue the past week.  I sort of feel like I was re-diagnosed after receiving that email from Heather.  I continue to struggle with the what ifs and what the future may or may not look like. I hate it.  I hate worrying.  I hate fearing the worst.  I really do try to remain positive and I feel like I will be fine and that I have many years ahead of me I just constantly struggle with the fear.  I'm normally so positive; this negativish Jenesa annoys me.

Monday, April 1, 2013

still no response

I haven't heard back from Dr. Bartlett's office yet.  I'm thinking about emailing them again (without becoming that annoying patient).  I want to have a face to face appointment with the Dr. Sardi and Dr. Bartlett (and Sugarbaker if he'd accept me as a patient, as of now he said no) so maybe I can get those appointments set up. I am really struggling living day to day knowing there might be something I should and could do.  I am terrified that if I make the wrong choice (whether to have the big surgery soon or in time if diagnositc testing show it is time) that it could cost me my life.  It's such a big decision. But then at the exact same time as all of this fear circulates through my mind, I am so thankful that I am feeling well and that you'd never know I have this monster inside me.  My quality of life is high.

Here are a few photos from Europe:)











Wednesday, March 27, 2013

A Dream Vacation

We got back from our amazing vacation late Sunday night.  My first time in Europe was more than I could have imagined. I was able to relax a bit and not let cancer consume my thoughts for the first time in months.  It was difficult to maintain my healthy diet but I tried not to worry about it.... I even had some french bread, a few bites of chocolate and a glass of wine (or two)

Our flight over was pretty easy. 9 hours never went by so quickly.  We landed in Zurich about 7 AM, our bags arrived too and our ride to St. Moritz was there waiting.  St. Moritz is about a 3 hour drive from the airport so we asked the driver to swing by a cafe.  They speak Swiss German there so ordering was a lot of pointing and nodding but we survived our first dining experience.  The coffee was SO strong. I soon realized that coffee in Europe means espresso unless you specifically ask for an americano.  I've got to mention that there were elementary aged kids walking around the city.  I was in awe.  Apparently it is so safe that people just let their little kids walk to school- through the city!!!  They were so cute. St. Moritz is such a nice ski town.  We stayed at the Kempenski Grande which is located at the bottom of one of the ski mountains.  We intended on walking into town immediately but we both crashed right when we got to our room.  After a quick 3 hour nap we made out way to the main village.  It was SO cold. I think that was our last walk in Switzerland. We took a cab everywhere else.  We went to this outdoor, post ski bar, a few shops to grab some gifts for the kids and made our way to some random restaurant for food.  Saturday was our first day of skiing. We set up a "lesson" which is basically a tour guide of the mountain who also gives you pointers. His name was Rolland and he was so nice and funny.  We had a great time. It took me some time to get my confidence on the skis again.  He even noticed, saying something like, " there's something going on in your mind that's keeping you from letting go". I laughed thinking he had no idea.  We had lunch way up on the mountain in this private room with 8 young locals. We basically crashed their lunch but it ended up being a lot of fun.  The room was so cool,  Windows all around and a cozy fire place.  Rolland recommended a great restaurant for dinner, Bella Vista.  The owner is a hunter and most of the meat they serve he hunted.  We went there for dinner and we both had venison.  It was amazing!!!!  We were with Rolland on Sunday too, just at a different mountain. The conditions weren't very good that day but we went out anyway.  I was actually skiing my best right before I made a stupid mistake, fell and totally messed up my knee.  I assumed I actually hurt it because it loudly popped.  I think Sean was more upset than me. Long story short, a ride down the mountain in a snow mobile and a trip to the ski injury hospital later I was sort of diagnosed with a meniscus injury.  We had met a few people the night before at the lobby bar and I ran into them in the lobby after my accident.  Sean and I hung out with them that night and had a blast.  Some of our favorite parts of St. Moritz and the Kempenski Grande were the heated bathroom floors, the amazing breakfast spread, the mountain restaurants, the frozen lakes and the beautiful surroundings.  We were set to leave for Paris on Monday morning and we woke up to so much snow!  It was an interesting 3 hour drive to the train station but we made it.  We grabbed some really good pizza in the train station and departed on our train from Zurich to Paris.  It took about 4 hours. I really enjoyed traveling by train.
Paris literally took my breath away.  As soon as we walked out of the train station I was blown away.  I never expected to love Paris as much as I do.  The city is amazing.  So much history. It is so well taken care of too.  We stayed at Le Meurice which is an old palace that they restored and made amazing.  It was so fancy.  We attempted to find this hip restaurant but we got very lost.  Somehow we mangaged to find a Canadian restaurant where the servers were American. We had a good laugh about it and were happy to get out of the rain and to get food into our bellies.  Tuesday was for me.  A day of shopping and walking around Paris. I had a blast!  We had lunch at a great place and had huge dinner plans. We at at Le Jule Vern which is at the top of the Eiffel Tower.  The view was obviously incredible and the food was good too.  We had a private tour of Versailles and the Louvre on Wednesday. It was like years of history class jammed into one day.  I really enjoyed the tour.  We left for London on Thursday morning on the Eurostar.  That was a very easy and quick ride.  London was cold too and pretty rainy.  We immediately found a pub.  Sean was on cloud 9.  We had a private tour of The tower of London and Westminster Abbey on Friday. Our tour guide Peter really liked to talk; especially about how America is America because England let us go.... whatever :)  I loved the history in London too.  We had dinner with one of Sean's clients and his fiance that night.  Saturday was supposed to be the shopping/explore day but it was rainy and cold so we went to Harrods, ate lunch at this amazing Indian restaurant (I haven't eaten that much in a while) and then we rode the tube and found our way to the London Eye. I hated it because I'm not the biggest fan of heights but Sean loved it :).  We had a nice dinner Saturday night and spent all day Sunday traveling home.  Sean and I both were able to relax and celebrate life and our 7th wedding anniversary.

Tuesday, March 26, 2013

the unexpected but sort of expected post

I just heard back from Heather with Dr. Bartlett's office regarding my slides.

"Hi Jenesa,
Thank you for emailing again.  I have been delaying my reply because our pathologists actually said there are 2 appendix tumors, which is not what we predicted and not what Dr. Bartlett's impression was originally.  We have our pathologists doing some additional reviews and showing the tumor(s) around to the rest of the group.  It's surprising but I need more time to get the final word from them and then I will certainly share it with you.  Sorry for the delay and the change in diagnosis again.  It's not always totally straightforward in the world of medicine, as you know.  
Thanks.
HJ"


I'm pretty upset.  It just sucks.

Thursday, March 7, 2013

I'm still here

Life has been busy.  Work is kicking my butt.  I may have come back a bit too soon as far as my sanity is concerned but I'm getting by.
I've been doing a lot of thinking these days.  I drive a lot more this year with work since my territory changed, which is good and bad.  It's good because I get extra time to myself but bad because I typically spend that time thinking and ruminating about all of the things that has happened or that could happen.  Like I've said in previous posts, I really annoy myself sometimes.
I'm beginning to think I need to take the time to forgive myself for living with this pain for 2.5 years and not demanding answers sooner. I know that sounds silly but deep down inside I'm disappointed in myself that I put myself last..... behind my kids, husband, job, friends and daily craziness.   I keep trying to figure out why I assumed I was fine when I was having horrible, reoccurent pain in the exact same spot of my body.  So, I'm sorting through that emotional rollercoaster right now. Lesson learned though.....RULE NUMBER 1, having pain in the same exact spot, over and over, is not normal!!!!  Never again will I let anyone I know, including yours truly live with pain.

Of course my mind is also preoccupied with those pathology slides that are in the hands of Dr. Bartlett and Heather. I am very curious if they've looked at them yet, but I'm too afraid to call or email.

And Ava has been comlaining of having a headache.  She's complained about 6 or 7 times within the past 2 weeks.  She says her head hurts right on her forehead.  One time she told me she was dizzy.  I'm trying not to give her attention when she says this but of course I am internally panicing.  After going through what I went through... my mind immediately goes to the terrible.  I'm going to ty to get her to drink more water because I don't think she drinks enough during the day.   I'm also going to keep a little journal of when she complains to see if there's a trend.  I'll email or talk to her teachers too to see if she's complaining at school.  I'm sure it's nothing but I'm worried. I'll also be bringing her to the pediatrician early next week to run it by him.

Tuesday, February 26, 2013

Look at what tried to kill me...

I picked up my pathology slides today. I am sending them to Dr Bartlett and Heather to ensure that they feel that I do not have pmp based on my original slides. I am praying that their opinion stays the same.
I was interested in these slides. There are 10 of them. It's amazing that each slide tells a story.
I fedexed the package today so they should receive the package on Thursday afternoon.

Sunday, February 24, 2013

8k

11 weeks ago tomorrow I had major surgery and today, without training at all, I ran an 8k.  My goal was to finish in under an hour and to run the entire time and I did it.  I finished in about 53 minutes.  I just kept telling myself that if I could overcome cancer and that yucky surgery, I could run this race.  Next time I will train for the race. :)

Thursday, February 21, 2013

zzzzzzzzzzzzzzzzzzzz..................

I've been very fatigued lately.  I'm sure it has a lot to do with being back at work and the whole low iron thing ;) I really struggle with over analyzing everything.  Whether it's how tired I've been or if I have a random pain or ache in my abdomen; I literally notice everything.  I have to talk myself off the "there's something wrong with me" cliff.  I annoy myself.

All in all, I'm feeling good.  I'm feeling physically strong.  I'm feeling mentally stronger every day.  I'm consciously greatful for every day.  I try to take a few deep breaths every day.   I make sure to enjoy the  little things that are easily taken for granted, like the amazing weather we've been having, the awesome breeze, all of the stars in the sky on a clear night....... and of course every second I get with my kiddos.

Tonight I was holding Liam before I put him to bed and I just wanted to freeze time.  He still loves cuddling with me.  All he wants is for me to sing "twinkle twinkle", give him kisses and rock him.  I love his sweet voice and his constant smile.  And Ava is such a joy. She has such personality.  I could just listen to her carry on.  She was telling me all about the two letter phonograms she knows and how many her friends know.  And even though she's growing up so quickly, I love sneaking in after she's fallen asleep and seeing her sweet face that still resembles what she looked like as a sleeping baby.

Sunday, February 17, 2013

blood work

This weekend has been busy.  From Valentine's Day dinner on Thursday night, work all day Friday, dinner with friends Friday night, a full day with the family Saturday and a fun, girls dinner Saturday night and then a really busy family day today....... I am exhausted!!

But I did get my blood work results Friday afternoon.  All tumor markers were totally normal.  Woohoo!!  However, I am really, really anemic. 2 of the 3 iron parameters are normal but my iron saturation % is L-O-W.  They want to put me on some drug called Hemax.  We'll see.

For now I need to deal with my little guy who is having the biggest, two year old tantrum I have ever seen.


Friday, February 15, 2013

Has the rollar coaster ended?

I've got some pretty interesting news.  I finally spoke to Heather. She is the physicians assistant that works with Dr. Bartlett.  After our initial conversation (when she told me she thought I would be a watch and wait) I sent her my complete medical file for she and Dr. Bartlett to review.  Then the whole mix up with the USPS happened, which delayed the process a bit.  However, last night Heather called me because she knew I was waiting and she was heading out of town for a week and she wanted to let me know their opinion had changed.

In my very first post, I shared Dr. Hodul's original opinion of "maybe there really was only this huge carcinoid in my appendix that blocked the opening and then caused a build up in my appendix which caused a small rupture and mucus to leak out.

Well, not only did Dr. Bartlett and Heather review my case but so did their entire tumor board (which is at a surgical oncology center that happens to specialize in PMP)  They feel certain that I do not have PMP.  That I do not need anymore surgeries.  That I definitely needed the right hemicolectomy but agree it was probably curative.  Dr. Bartlett thinks that the "mucinous neoplasm" was actually just an old build up of mucus that had no where to go.  *Everyone's appendix produces mucus*  That once my appendix ruptured (which again doesn't necessarily mean exploded, just a tiny tear = ruptured) the mucus/mucin that is naturally produced started to spill into my abdominal cavity.  They said this is why it is acellular.  That it is similar to what is found in a person who had an infected appendix that ruptured with no cancer.

Woah! Serisouly?  There's a chance that I don't have this stupid, one in a milion, horrific, devastating cancer? In Dr. Bartlett's eyes I do not.

So I really did receive 3 very different opinions.  4 if you include Dr. Hodul.
1. Dr. Hodul- go live your life. There's a chance this may never change.
2. Dr. Bartlett- you only had a carcinoid.  No true mucinous tumor.  Monitor for carcinoid purposes only.
3. Dr. Sardi- Carcinoid was treated correctly but you do need HIPEC to treat the pmp.
4. Dr. Sugarbaker- unimpressive and no need for HIPEC.  Watch and wait and monitor closely.

Guess which one I am putting at the top of my "I think I'll believe this opinion" list.
2. Dr. Bartlett- you only had a carcinoid.  No true mucinous tumor!!!!!!

That's actually a teeny bit scary to do because the thought of what if Dr. B is wrong circles through my mind.  I am absolutely not going to take Dr. Sardi's advice.  No more surgery for this girl unless it is clearly needed.  So I will take Dr. Sugarbaker's and Dr. Bartlett and Dr. Hodul's advice.  I'm going to live my life, get the necessary scans and bloodwork and pray that Dr. Bartlett is correct and that I am a cancer free, incredibly grateful chick!

How 'bout them apples!!!




Monday, February 11, 2013

The happiest place on Earth

We had such a nice time at Disney World this weekend. We spent all day on Saturday at the Magic Kingdom and all day on Sunday at Epcot.  My cousin and his family were visiting Disney for the first time.  (they are from New York) Ava and their daughter had a blast together!!!

Liam enjoyed himself too other than the dark rides.... he would say "Liam is scared.  I want to go home".



I am totally exhausted from the weekend.  We didn't get home until after 12 last night and guess who drove home..... yours truly.  I did really well with all of the walking.  We utilized this pass that Disney offers peolple undergoing any kind of medical treatment.  It was basically like getting a fast pass for every ride.  This saved us so much time and me a lot of standing.  Thanks Disney.  (and screw you cancer for allowing me the opportunity to use this pass:)

Despite Disney being the happiest place on Earth I had to fight with my thoughts while we were there.  I figured there might be close to a million people at all 4 of the Disney parks in one given day which got me thinking statistically speaking I was the only person there with PMP cancer.  Boo.  Major bad luck.

I am praying that I am making the right decision with waiting and watching.  I have my first tumor marker blood draw on Wednesday of this week.   Praying that those come back completely normal.  I believe they will.

Here are a few more photos from the weekend.  We really did have a great time.


Here is Liam kissing Minnie.


Liam was so tired Sunday night that he passed out in my arms at dinner (which was at 830pm)

My Twins

 Ava was so excited to meet Ariel (her favorite Princess). Ariel asked Liam if he was a guppy and he said, "No, I'm a dragon".


 And Last but not least,  Ava you are a beauty.