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.





Friday, February 8, 2013

the no name post

The past few days have been uneventful.  I ended up overnighting my records to Dr. Bartlett's office on Thursday ($40) because I'm eager to hear that their opinion is the same. Within 1 hour of me sending the package I received a call from Dr. Bartlett's office that they received my package.  How frustrating but at least they have it now. I've had a lot of thoughts about my decision on whether to wait and watch or to proceed now with the surgery. I met with a few of the women that also have PMP this week and they are also baffled with the feedback I've received.  They all agree that what Sugarbaker says is definitely the most trustworthy way to go.  I've decided that's what I'm going to do.  I'll be getting my baseline tumor marker blood work on Wednesday of next week (praying that they are in normal range) and then I'll get my CAT scan and the next round of blood work in June.  If all of that is normal then onto the next 6 months.

We are off to Disney World this weekend.  I couldn't be more excited!!  We haven't been in about a year and half and the kids are SO excited.

Wednesday, February 6, 2013

damn you USPS

I called Dr. Bartlett's office in Pittsburg just to make sure they received my package and to confirm their opinion stays the same after reviewing all of my records.  Well, they never received anything.  I sent it priority mail 2 weeks ago!!

So tomorrow I will fax the paper medical records and overnight my CAT scan CDs.

Monday, February 4, 2013

Dr. Sugarbaker has spoken.

 I am back at work so the mornings are very busy again. Once I got the kiddos to school and started making progress with work stuff,  I randomly decided to call Dr. Sugarbaker to see if he had reviewed my medical records.  His wife Ilse is the gate keeper/office manager/etc. so she is who I spoke to.  (I have spoken to her 2 other times as well)  Today she knew exactly who I was when I told her my name. Our converstion went something like this:
Ilse "Dr. S very carefully looked over your medical records and he was unimpressed.  He feels you do not need HIPEC at this time and that it would be like finding a needle in a haystack if there's even a needle at all"
Me: "Really? you just made my day"
Ilse: "I think I just made your week"
Me: "You are correct"
Isle: "Dr. S says you should have quarterly blood tests and semiannual CAT scans to monitor the disease and make sure it is caught early if it progresses"

This is amazing news. Of course it makes things complicated.  I was told by my dad that getting 3 opinions will be difficult.  He's correct.  Who do you listen to?  2 out of 3 say wait and watch.  1 says do the HIPEC now and be cured (90%).  I will say that Dr. Sugarbaker's opinion weighs very heavily in my decision.  I still want to meet with Dr. Sardi to find out why he feels now is necessary.  The weight lifted off my shoulders is huge. I know I'm not out of the woods for sure.  But I'm going to live my life like I am (or try to) and try to just think about this only when I have to.

I am thankful for all of the prayers I have received.  I find it helpful when I know exactly what to pray for when someone else needs prayers so I have a specific prayer request.  Please pray that nothing with these cells ever changes or grows but if it does, we catch it early and it is still curable.
Thank you :)