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:)