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.

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.

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!

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!

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.

Just breathe through it

Life can be busy and life can get pretty stressful.  I am learning to just breathe through it.  Don't let stress weigh you down.  

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.