Sunday, December 30, 2012

Settling in

I figure I'll be a little more thorough in describing what our appointment on the 27th sounded like since my previous post was written on my iphone and was very brief.  My Mom, Dad, Sean and I attended my post Op. appointment with Dr. Hodul.  (I've got such great parents, still going wtih me to Dr.'s appointments even when I'm 31 years old.... :) After waiting for about an hour, Dr. Hodul came in.  I was SO nervous.  I feared that because they took 46 lymph nodes and because I had the tumor in me for YEARS there was a chance that something would show up in a few of those lymph nodes.  Dr. H was very calm. She had the pathology papers in hand.  She first asked me how I was doing. She took a quick look at my incision, told me if the steri strips didn't fall off within the next week, I'd have to take them off myself (cringe).  The pathology report was SO confusing.  There were multiple sections, adendums and many words I did not understand.  I must have said, "what does that mean" every other word out of her mouth.  So, my paraphrasing summery is......  they took 46 lymph nodes total (a few different groups, but all add up to 46) No disease present in ANY of the lymph nodes.  At that point I really needed a few moments to regroup, the weight lifted off of my shoulders was overwhelming.  Then she explained that the portion of the colon removed was removed in two segments and there was no disease present in either segmant.  Hooray!  (she is also pretty much only talking about the carcinoid tumor) She reconfirmed that she went through my entire bowel and did not feel any carcinoid tumor anywhere. She told us she'd be shocked if it ever came back and that I would be monitored very closely to make sure if it did, we'd catch it early.  Now the confusing part.  The other tumor that was in my appendix is the low grade mucinous neoplasm.  These tumors secrete mucous also called mucin.  The tumor was removed with my appendix on 11/13/12 but there was mucin on the outside of my appendix which makes it pretty certain that there is mucin in my belly.  They sent teeny tiny pieces of what they were testing for mucin into pathology along with a few other things that I didn't understand what they were (some kind of calcified, tiny nodules) So, technically there was mucin.  They had to test it with a staining method and even their words sounded like they were assuming it was mucin; it was so small it was hard to tell.  Also, mucin typically has cancerous (aggressive) cells in it.  The mucin they found had no aggressive cells and no epithileal cells in it.  (very good thing).  There is a major surgery called HIPEC that is used to treat mucinous cancer.  We all wanted to know if I was a candidate for it.  Dr. H was very adamant that I am not. She explained that the goal of that surgery is to get the mucin to 1 cm pieces and then begin the heated chemo.  The mucin in my belly was 1 mm or less.  HIPEC is also a very difficult surgery with lots of morbidity (not mortality) and isn't worth the many risks that come with it at this time. Of course our natural desire is to get ride of it but there isn't any treatment.  Mucinous cancers are extremely rare (like 1 in 1,000,000) and the research isn't there.  I will have to be monitored VERY closely.  The difficult part of that is that CAT scans only pick up 1 inch tumors (at the smallest).  Dr. H said this cancer grows slowly and mine may never grow or change.   Sean and I have felt very comfortable with Dr. Hodul and Dr. S at moffitt. Both are carcinod specialist.  However, with the wait and watch approach for the mucinous cancer we feel that we should get a second opinion with a DR. that is a mucinous specialist.  There are actually a lot to choose from.  Right now we are leaning towards a Dr at WFU in North Carolina, 2 Dr.'s at MD Anderson, a Dr. in Washington DC and a Dr. in Pittsburg.  We are taking January off as a "let our brains catch up to what has happened" month and in Feb. we will meet with 1 of these Dr.s hopefully in Feb.

The good news is settling in.  It is still hard for me to swallow that having 1 of the 2 different cancers considered gone and the other considered low grade and watch closely is the best news.  I don't mean to sound ungrateful, because I am beyond thankful for the miraculous news we've been given.  I guess it is just going to take some time to get used to living and thriving with cancer.   I am very optimistic that my Dr. is correct and that the cells may never change.  I also am taking any precaution I can to help my body be strong and ready to fight any cancer cell that try to grow.  I'm not quite ready to begin my super green diet (due to the surgery and condition of my healing colon (sorry if that's TMI)) but I'm taking many good supplements, I'm set to begin a series of mediation classes, I am seeing a therapist to help me deal with this life altering ordeal, I'm going back to my acupuncturist and as soon as I can- I'll be in a serious exercise program.  (I'm thinking a mix between running, weights and yoga.)

I've also joined a few support groups.  There's a FL carcinoid group and 2 different PMP (that's the mucinous type) groups. One is in the US and one is in the UK.  With all three I can speak to other survivors and I also have access to the people who have "been there done that".  

That's it for now.  Have a wonderful and safe New Years and lets all cheers to a HEALTHY and AMAZING 2013!!

Thursday, December 27, 2012


Leaving moffitt now with the best possible news!!! Pathology from surgery on 12/10/12 was as good as it could have possibly been. No lymph node involvement. No sign of further carcinoid tumors. Dr said she'd be surprised if the carcinoid ever came back. The mucin in my belly was 1 mm ( considered very small) she was also optimistic about those results; no aggressive cells were present.
I'll write more later when I'm at my laptop.
Thank you for all of your thoughts, prayers and encouragement.
Thank you God.

Wednesday, December 26, 2012


Just Breath.  That's what I'm telling myself as my nerves unsettle before my appointment tomorrow.  I know the pathology is in and in 12 hours we will be hearing the results.  I feel strong.  Seriously, 17 days out of major surgery and I'm feeling pretty good.   I have been a little uncomfortable on my right side (where the internal connections have been surgically changed) but it's not terribly painful, just a little sore. I'm assuming that's to be expected, but I'll ask tomorrow. I've also had a bit of belly bloating. This was present after the surgery but went away and now it's back.  It may be from something I ate.  (I had papaya and a few other foods that may have stretched the limit of my current low residue diet. )  Again, I can't wait to be able to eat the yummy, green foods that I am craving.

Please continue to pray for good news.  Your prayers have been heard and we are so thankful for them.  I will update the blog as soon as I can tomorrow.

Tuesday, December 25, 2012

Merry Christmas

We hope you have a wonderful day with your family.  I am so thankful to be celebrating with my beautiful family

Sunday, December 23, 2012


I have been abundantly blessed with support. My family and friends have been so supportive.
Sean, my husband, my rock, my best friend has been such a solid support for me.  My mom, dad, sisters, aunt, uncles, cousins, inlaws, friends, coworkers, even total strangers, have been here for me. Saying Thank you isn't enough but I'll start with that.

Friday, December 21, 2012

tick tock

I look forward to feeling like myself again.  I'm not the girl who likes to stay home and veg out all day (or for many many days)  I think this is one of the hardest parts of this ordeal.  I have to rest and heal.  I have to go slow, but all that does is leave me bored and thinking about stuff.  Sigh.
It is settling in that what has been uncovered will never change.  I can't make the fact that I am 31, otherwise healthy, diagnosed with 2 different cancers (one rare) go away.  That's the hand I've been dealt.  So when I sit here pouting or frustrated about it I just tell myself, "there's nothing I can do about that". I'm trying SO hard to concentrate on what I can control.  It's just hard when I'm stuck at home with my thoughts and worrys. I want a plan.  I want to know the pathology from the surgery.  I just want to hear all was good from the pathology.  That way I can concentrate on my recovery and whatever next steps there are to completely irradicate that stupid mucinous cancer.
It's overwhelming but I can clearly see my life after the battle I'm up against.  I just need to stay strong while I'm in the fight of my life. (no pun intended :)

Wednesday, December 19, 2012

Tuesday, December 18, 2012


The morning of my surgery Sean and I lit a candle that was given to us by our dear friend Melissa. The candle is supposed to show us that God is capable of miracles and the he is with us always. So, of course Sean and I lit it. We'll take it ;) we said a prayer, lit the candle and off we went at 5:45 am to begin this surgical journey.
Of course by reading the blog you know how the week went so just fast forward to Sunday evening. I had been home from the hospital for a few hours. Sean came downstairs after putting the kids to bed and as we stood in the kitchen, the candle that was STILL flickering away (7 days later!) went out. The flame burned the entire week I was in the hospital.
I can't help but truly feel protected.
As I wait for the pathology results I have to believe that everything is going to be ok. Physically, my body has been beat up a bit. Emotionally I've been a litte wobbly but I can feel my body and mind getting stronger everyday.

Sunday, December 16, 2012

Home sweet home

I'm home! I am overwhelmed. It's so comforting to be in my safe place but I literally can't do anything.  My belly is sore and I'm still a lot under weight so need to take it easy. I'm blessed to have so many people offering to help me.  My mom is making me lunch and doing everything I want to do so I can just sit back and eat;)

Saturday, December 15, 2012

a good day

Saturday has proven that I am really feeling better every day.  I've only had to take two (low strength) pain pills today and it's mainly because I'm still coughing a bit.  I had a good day too.  I went outside with my mom, did some holiday online shopping and the VERY BEST PART.................................
I got to see my two beautiful munchkins.  It took everything inside me not to just sob out of joy when they walked in. Ava was all dressed up in her dance recital clothing and looked just perfect.  She immediately embraced me and just the smell and feel of her little body filled me with strength.  Liam walked over next and when he realized it was me he grabbed my hand and said "lets go bye bye mommy".  Seriously my heart completely melted.  He sat on my lap for a few minutes while I kissed his squishy cheeks approximately one million times.  He just sat there content in my arms.  5.5 days was excrutiating.  They fuel my will to get stronger.

I am so ready to go home tomorrow.  I can't wait to be in my home.  To see my family as much as I can.  I can't wait sleep in my bed.  To shower in my shower.  To wake up to our beautiful view.  To sit outside and smell the breeze.  I may never take anything for granted again :)

Friday, December 14, 2012

hello friends

It's me, Jenesa.  I am feeling SO much better today.  They let me have liquids and tomorrow I get to have some real food!!!  My last meal (as in solid food) was last Friday night 12/7/12) so I am ready to eat.  This experience has been such a whirlwind.  I was ready for the surgery.  I knew I had to do it so getting it over with was something I wanted to do.  Monday after the surgery was the easiest day out of M/T/W/Th. Probably because I still was under some of the effects of aneasthesia.  Tuesday and Wednesday were yucky mainly because of the NG tube.    I understand that it serves such an important purpose but holy schmoly I HATE IT,  I was actually hallucinating a bit from the narcotics.... so weird.  I don't like drugs and am happy to be off all narcotics.Wednesday night I was certain there was nothing more miserable.  My heart breaks a little knowing that my mom had to see me go through what I went through wednesay night.  Aa a mother, I can't imagine how hard that must have been.   But the good news is Thursday was better than Wednesday, especially since they took that tube out in the morning and Friday has been the best day yet. Sean even squeezed into the twin hospital bed with me and we both got some sleep.  He brings me so much comfort.  The only annoyance is the feeling i have in my throat.  I can't wait for that to heal.  My tummy is sensitive but I know that in time that will get better.  My incission hasn't been painful at all (unless I cough)

I am still trying to process everything.  I feel like I'm starting a new life.  I'm still similar to the old J, but I'm different.  I am a me... but a cancer survivor.  Even though I just typed that I can't believe that I was diagnosed with cancer.  What?  I know that concentrating on that does me no good so I will not spend any more energy on thinking about what bad has happened because of the cancer.  I will concentrate on the good.  I am a survivor.  I am surrounded by a loving family, amazing friends and a God that loves me and has protected me through this challenging time.  The amount of prayer I have received has been like a blanket.  It has all covered me with love and hope and helped me heal.  Thank you to everyone who has prayed for me. 

Thank you for the meals provided for my family and for me.  Knowing that there has been yummy food for my children while I was away has been so comforting.  My room smells like a floral shop.  It really does. so Thank you for the flowers, gifts and lovc.  

And because I love all of you, do me this one favor.  Take care of yourself too.

Update from Sean

Well if I am typing that means Jenesa is not quite ready to do the updates. This morning we are thankful for no tubes, kind nurses, talking, fresh flowers, and comfy blankets.

Before I go forward let me take you back.

Surgical day 3 (Thursday 12:00am) - I am home 48hours of no sleep or shower has made me smelly and useless to Jenesa. Her mom didn't have to do much persuading. I don't think she knows what she's in for. The past two nights have been rough.

The best part about being home was seeing the kids. Vika and Tila did an amazing job taking care of them. Not surprising, the house looks amazing too. Thank you Vika. When I got home Wednesday night I heated the pool and took Ava and Liam swimming. I didn't care that it was raining (no lightning.) I just wanted to see them playing, laughing and having fun.

I know you aren't reading this to find out about my day. I got my first indication of how things were going back at the hospital when I got a text from Jenesa at 3am. What are they putting in her IV? Red Bull?? Most nights at home I'm teasing her for wanting to go to bed at 8:30pm. How is she awake after all the drugs they have given her to make her relax and not eating for 5 days? Her text was all the information I needed to know things weren't getting any easier for Jenesa.

At 5:30am I got a phone call from Rea (mom) confirming my suspicions. She told me Jenesa was asking for me. I have known Rea for eight years. I couldn't ask for a better mother-in-law. I really feel like she is my second mom and friend. She NEVER complains. A few years ago She broke a rib going down a slide with Ava and never complained, cried or told many people. She is a giver. I have personally witnessed her prepare and cook a meal for thirty people with one days notice, again with a smile and no complaint. Jenesa and her mom have a special bond too. They talk everyday. When I got a text from her in addition to the phone call I knew things had to be really, really hard for her mom.

I got to the hospital around 7:45am. It was obvious that Rea didn't get a wink of sleep. She told me that Jenesa was having trouble with anxiety and her NG tube. The anxiety issue isn't new. It saved her life. If she had ignored the pain that started all this her appendix could have burst sending the cancer all over. Now her anxiety seems to be taking over. I am hoping she will recognize this and get it under control. Being on so many narcotics isn't helping. In fact Rea told me they stopped the narcotics and are just giving her a local (shot) to help with pain.

A few minutes after I got there Dr. Hodul showed up. She took a look at Jenesa and said to the nurse, "take her NG tube out." Whew, the day is starting out well. Her main source of problems, the NG tube is comming out and being off narcotics should help her calm down. Dr Hodul also said she was progressing just fine.

The rest of the day was full of  visitors, Melissa Walters, brought us some soup. Yummy. Jenifer Austin brought Jenesa one of Liam's stuffed animals. She loves it. Shaina, Alec, and Adrienne brought a beautiful blue orchid. Steve her business partner talked to her for a while, that made her feel better. He must have enjoyed the fact that he could get a word in since she has NO voice. We also got a visit from a Rabbi, Christine, Megan, Mark Lee, and Scott. I really hope I'm not forgetting anyone.

Next goal - wake that belly up!! So she can eat.

Surgical day 4 (Friday) 4:00 am. Besides zero sleep, by far the best night yet! I have got to ask them for some of that IV juice. I want to thank the Bainbridge family for the meditation CDs. They have really helped calm both of us. The biggest issue is her throat. When she had the NG tube in, it irritated her throat which caused mucus to build up. It is difficult with her sutures to cough that up. Also, on a normal day, she doesn't do well swallowing pills. Unfortunately, there is a pill she has to swallow but refuses to because she is afraid it may get stuck or cause her to gag. Still no voice.

She is doing really well with getting up to walk. We walked twice in the early am. Dr G is here now. He is giving us a good prognosis. If she can get the blue pill down and keep walking that shoul get her belly awake.

Thank you all for your prayers, gifts, friendship, love, and hope.



Wednesday, December 12, 2012

Update from Sean (husband)

Day 3 -here we come.

Where do I start.

Give Thanks.

Thank you God. Thank you Jesus divine physician. Thank you Mary.

 I am incredibly thankful to all of the hardworking doctors and nurses that have helped us. We are also thankful to all of our family and friends for their prayers, visits, flowers, food, and support.

Update from 12-11  to 12-12

Surgical day 1 (Tuesday 5:45am)  Jenesa is by far the most beautiful patient here. She can rock a hospital gown! It's surreal to wake up here and realize this is not a nightmare. I had to pinch myself this morning. That pinch was a sign of things to come. 

They call this "surgical day 1." It was a long night. Jenesa did not sleep. The anasthesia is begging to wear off and that is bringing a whole new level of discomfort. I fell asleep at 4am. For anyone that has ever had to spend the night with a loved on at the hospital you know how I am feeing. If you haven't enjoyed the pleasure of a fold out chair, it's a lot like taking the cushions off your couch and making a bed with them on the floor. I am thankful to be here next to my love. There are a lot of other patients who haven't had visitors. 
Our Dr. G. came in to check the sutures, and to give us an update, he said that the tube (NG tube) could come out when her stomach 'wakes up.' The NG tube is causing her the most discomfort so we all want it out. We wake her stomach up by walking and getting out of bed onto the chair. So our goal is to get up and move.
Turns out the goal was easier to talk about and harder to do. When the nurse started to get her up, she was in a lot of pain. I had to leave the room, (was asked to leave) because I couldn't stand seeing her hurting. Kids if you read this one day I want you to know that you have a strong mother. Nothing was going to keep her from reaching her goal of getting to walk and getting the NG tube out. As I stood in the hallway, a very tiny Jenesa walked by. One loop, two loops, three loops around the floor. Amazing! I didn't hear one complaint but I could see in her eyes how much it hurt. After that she took a short break in the chair and then requested that she get help to take another walk. This time she did four loops. Remember she hasn't had ANY food for four days.
The last reportable event was they removed her epidural and she is now officially on pain meds. This is good and bad. Good because they can now take her catheter out. She has to be able to go to the bathroom before she can go home. Having the catheter out gets us closer to home. Bad because she doesn't like the side effects to the new pain meds.
We had our first non family visitors today. The Hutchisons and the Wrights. We also received a lot of flowers. Our tiny room looks and smells like a flower shop. The texts, calls, flowers, emails, visits, prayers are all helping build her spirits. 
The doctors came in for a visit before they went home. Dr. Hodul was confident that her NG tube could come out tomorrow. Great news.

Surgical day 2 (Wednesday 5:12am)

I got up to use the bathroom. My reflection scared me. I desparetly need a good shave and shower. Probably a few hours of sleep too. Jenesa on the other hand has perfect hair, skin, and without the tube in her nose looks great. I am not sure where she is finding this strength, she was up all night trying to deal with her pain, the NG tube, and my snoring. I don't know how I am going to do it but I 
may have to let her mom stay tonight. 
Dr. G and Dr. Hodul came by early. Do they ever sleep? They discovered that her NG tube was not draining properly and when they fixed it, they let us know that it would have to stay in another day :( Jenesa is determined to get the tube out. She is asking and begging to get out of bed and to walk. This place is soo busy that no one is available to help her. 
Everyone has been so nice. I just can't believe how busy this place is. It reminds me of JFK airport Thanksgiving weekend. There can't be this many cancer cases without some environmental cause. Is the human body that frail? I am not going to be taking that chance anymore. Dr. Kevin Elko said, "there are things you can control and things you can't control."I may not be able to control getting cancer but if I can reduce my chance of getting it then that it worth doing. I for one am going to control what goes in my body. If you say it can't happen to you, please understand every patient here 
told themselves that same thing. 
Enough digression. Jenesa is up and walking. I will write more later. SW

2 days post op

Ouch! This hasn't been easy. Definitely cringe worthy. In some regards I'm ok, like I'm still silly or the bed isn't too uncomfortable. But if I were to tell the truth I'd have to say ouch!!!!!!!!!! Maybe with a few bad words thrown.
THE ng tube will now haunt my dreams. The not eating amything for 5 days hurts. It's funny that I packed all these cute pjs and immnot planning on removing this hospital gown

I think the pain killers are taker over good njght

Monday, December 10, 2012


Hi. It's Jenesa. I'm doing well considering.  I'm not in any pain, thank you epidural. I am breaking up with the NG tube as soon as possible.
I'm very woozy so I'll check in later. Thank you for your continued prayers and support


Just met with the went well and Jenesa should be out of the recovery room within the hour.  Dr. Hodul described it as a "cure".....wth some maintenance.  Let the healing begin.....your thoughts and prayers have been an enormous help.  Thank you!


from Charna.....
J is still in surgery, Sean is beautifully adnorned in Jenesa's jewlery and our father's are talking about nuclear fusion and light rails. All of the prayers and well wishes have been amazing! I am praying we hear something soon and that I never have to hear about nuclear fusion again


Surgery started at 8:51.  We are in the waiting room solving all of the other world problems.....I am sure Jenesa's doctors will be far more successful.  Updates as they come....


Mom speaking.....just left Jenesa in the OR Prep area after she asked the anesthesiologist about 50 questions. He was impressed with her knowledge and her spunk....that's Jenesa! She is in good spirits and totally ready to have this ordeal behind her.  I will update as we are updated. 

Sunday, December 9, 2012

Pre surgery day 2

This time tomorrow I'll be hanging out with my epidural and pain killers and I'll be totally CANCER FREE!!   The waiting this weekend has been harder than the thoughts of the actual surgery. I have really had little anxiety (seriously haven't even had a Xanax:) I am confident in my surgeon. I'm confident in my body and I'm confident that God has this under control.  I've learned so much from this experience already.  I am looking forward to an easy (ish) recovery.

The start time tomorrow is 815 AM. Please (and thank you in advance) say a prayer for me and all involved with the surgery. 


Saturday, December 8, 2012

Surgery prep Day 1

I'm feeling ok today. Mentally, I am so ready. I wish I could fast forward and be in surgery right now. I'm ready to start the recovery climb. I'm already envisioning my first meal post surgery.  Physically I'm feeling really hungry. No food today ( or tomorrow) I've had some broth, lots of water, some juice and this gross pre surgery drink but I'm definitely hungry!! They said I could have ensure or boost but just reading the ingredients gives me anxiety.
I know the next 36 hours will fly by and I'll be at Moffitt before I know it. 
Somebody pinch me please :)

Thursday, December 6, 2012


I spoke to my surgeon a little while ago.  It was so nice of her to call and fill me in on the tumor board conversations. She reconfirmed that the two tumors are in fact two seperate types of cancer (boo) but she was so positive.  I feel like it's her job to tell a patient when things are looking grim and when things are good.  So, when she said, "You are going to be fine!  There's a good chance these tumors will never come back and if they do... they are very slow growing.... it's like diabetes, very manageable"  Of course,  my immediate reaction is "oh S$#t." but it's been about an hour and I feel better.  I trust her. I trust myself too. I know I will do everything I can to stay healthy.  (scans as needed, blood work as needed, all annual appointments on time, healthy eating, exercise, etc)  We talked a little bit more about the surgery and ended the conversation with "see you Monday morning".

Anyone know what this is?  Three times now I've had light sensitivity.  Like flashing lights in my peripheral vision.  It's so annoying.  (and I'm not getting a migraine)

Fly on the wall

Good Morning.

So, it's Thursday morning, you know what that means?  Tumor board time.  I wish I could be a fly on the wall to hear what's said about my case.  The good news is that I typically obsess about things like this and I feel fine this morning.  I feel like I'm being treated at the best place possible so I'll just trust the "Tumor Board".

This week has been busy.  I've been finishing holiday shopping, buying the materials for Ava's tap recital (thank you Vika for making the costume), working, trying to find places that sell organic pre made food (so I can eat while I'm out and about) and many other things.

I still feel good.  I feel very postive about this surgery.  I am ready to put this all behind me and the surgery is the last hurdle I face.  All I have to do is heal once it's completed.

I want to thank you all again (and again) for all of the prayers and support.  It's so overwhelming (in a good way).  I couldn't be more blessed to have so many people in my life that truly care.

Have a great day!


Monday, December 3, 2012


Even though the past 15 days have been a whirlwind, there is a calmness that has begun to settle in.  No one EVER wants to get diagnosised with cancer.  But as far as getting diagnosiged with cancer goes, I've been one of the lucky ones...... blessed.   I spoke with my oncologist today and what we know is:  Both cancers (the two different tumors) have come back from Moffit's pathologist listed as low grade. (This means that the surgical oncologist theory of the second tumor not really being a true cancerous tumor is not correct, but at least they are both low grade) Both scans have cleared the worry that anything has spread. All labwork has come back negative for the yucky chemicals and markers they were checking for.  And even though this huge surgery is starring me in the face, it's what hopefully will seal the deal with beating this cancer.

Anytime I get anxious about the surgery I tell myself that I this is the necessary step to get the rest of the tumor out.  (clean margin)  Sean and I met with Moffit's anesthesiologist today.  I'm leaning towards getting that epidural.  It will be nice to have one, big safety net for pain management as I wake up from the surgery.  

My cold is going away.  I'm not sure if it was just a nasty virus or if the antibiotic is working, but I'm feeling better. My appetite is getting better too.  I'm not loosing any more weight.  (in fact I may have gained a pound or two.) 

The next 6 days will be full of tying up loose ends with work, the holidays and for this mamma being a bit out of commission for a few weeks.  

I want to thank you again for all of the prayers, positive thoughts and encouraging words.  It ALL helps.  Please pray for a successful surgery.  For no complications.  For my surgeon and medical team.  For my recovery.  For the pathology report (from anything removed during surgery) to come back clean.  For my family. 

Thank you.


There are things that we can not control.  But there are things that we can control.  And what I know is that I'm going to be fine.  I'm going to be a SURVIVOR. I have a lot of living left to do!

Friday, November 30, 2012

Surgery and Sneezes

I heard from the surgeon's office today.  Surgery is scheduled for 12/10/12 at 8:15AM.  I have my anesthesiologist appointment on Monday afternoon.  I hope they can answer all of my questions.  Even though the surgery I had on 11/13/12 was pretty easy, I'm pretty nervous.  I get a little squirmy about the breathing tube.  And of course thinking about the incision makes me cringe.  I am completely over having the big scar, I just don't like thinking about having a big ole "boo boo".  I'm afraid I will come out of surgery in SO much pain.  I guess that's what they make the good stuff for.  I have an option of getting an epidural before the surgery so I don't wake up in pain.  I can even keep it in for a few days.  I'm just concerned that for every thing I do, there are additional risks and potential side effects.  Sigh.

I've had a cold creeping up on me since Tuesday.  I officially feel terrible.  I think the stress and weight loss made my immune system take a nose dive.  I'm just going to take it easy this weekend and pray it goes away soon.  As scary as the surgery is, I don't want to have to postpone it. I just want it over with so I can heal and move on from this nightmare. 
Have a great weekend :)

Thursday, November 29, 2012

I have WHAT????

This post is being written 10 days late.  I wish I started documenting this ordeal on day 1, but at the time it was just too much.  So, I'll see what I can recollect.

Back story, starting in May of 2010 when I was about 20 weeks pregnant with Liam I began having intermittant, horrible pain in my lower, right abdomen.  It would come on suddenly and last anywhere from 5 minutes to 30 minutes.  The pain happened a handful of other times during the pregnancy (mostly at the end when my belly was large).  This was chalked up to Sciatic pain, UTI and just normal pregnancy pain. The pain continued very intermittently, but when it happened it hurt! Between then and now I saw my primary care dr (who said I had a vitamin B difficiency) and my OB-GYN who ran a few non-invasive tests.  Most recently, I had an HSG (which showed a blocked fallopian tube) and a completely normal colonoscopy done by a GI DR.

But I still needed answers so we scheduled a surgery with my wonderful OB-GYN which took place on 11/13/12.  As soon as the surgery started they saw that my appendix was very large. The called a general surgeon who came and took it out and sent it to pathology.  I recovered quite easily and began to forget about the situation, assuming that all that time it was my appendix.

Day 1 11/19/12
I received the news that no one ever wants to get.  2 cancerous tumors were found in the pathology of my appendix..... 1 neuro endocrine carcinoid and 1 mucinous neoplasm.  That feeling that I had was one that I would NEVER wish on anyone.   I was a mess. I felt like it was an immediate death sentance. All I could think about were my two babies.  How could they grow up without their mother?  (10 days out I now realize that was probably the initial shock)  I called Sean, my mom, dad and two sisters.  Everyone came over (that lived in town).  We just cried.  It was awful.  Even though I clearly had this for years.... life had changed in an instant.

Day 2
This was a bad day.  My skin was literally gray, my eyes where sunken in and I was a serious MESS!  I was stuck with my thoughts. I refused to go online and research in fear of what I may find, so I just fought with my thoughts.  I was praying for comfort; for strength; for calmness but that day was not my best day.  Ironically, this all started happening during Thanksgiving week. (2011 Thanksgiving was a HORRIFIC nightmare with Liam's asthma attack on the cruise ship.... air ambulance to All Children's Hospital.... )  I just want to note that Ava is amazingly sweet. She sang to me after my initial surgery to "heal my boo boos" and her songs continued during this hard time.

Day 3 and 4
Through amazing friends, we were able to get in to see one of the best oncologist in the country, who happens to specialize in Carcinoid tumors, in just 2 days.  Though he didn't have anything but the initial pathology report and post operative notes we had a good meeting.  He ordered blood work, urine analyis, CAT scan and an octreotide scan ( you may have to google that last one :)  At this point, I was still very emotional.  The only thing I knew was that I had two different tumors in my now removed appendix, but there was so much unknown.  Had either spread? What kind of treatment is coming?  Seriously, 100s of questions and fears and thoughts were racing through my head.  The Dr. told me that without seeing the scans he couldn't be certain if the tumors spread or not but his experience leaned towards no.  (there was a glimpse of hope)  My amazing mom took over Thanksgiving dinner that was scheduled to be at my house with 35 people   I was just in a bad place.  I couldn't even think of cooking and she was happy to do it.  One of the bad things that had happened since "the news" is I had no appetite.  I couldn't eat food that I typically love.  I was afraid anything I put into my body was going to make the cancer worse or cause it to grow.  I know how ridiculous that sounds but it was/is a real fear.  How did this happen? How did I get cancer? Was it something I could have prevented?  Because of the surgery on the 13th (I may have lost 4 or 5 pounds) and my now nonexistant appetite I was beginning to loose weight.  Thanksgiving was really nice.  Everyone was so sweet.  There was never an "elephant in the room".  I never felt like the one everyone felt sorry for; there was just a lot of love. I only had one breakdown (that only Sean noticed because he walked into our bedroom and found me sobbing). It was just so hard to see everyone together, wondering if I'd be there next year.

Day 5, 6, 7
The next 3 days were uneventful. I tried to go out and not just sit at home, but being in busy or loud places made me so anxious.  Like border-line panic attack.  I will say that prayer is the one thing that has helped get me through this.  We immediately had armys of people praying for me.  It's overwhelming to feel that much prayer, but in a VERY good way.  We received a lot of comforting, faithful advice and I started to relax. A little. By this time I'm guessing I had dropped another 5 lbs.

Day 8
I was supposed to have both of my post opperative appointments this day.  1 with the general surgeon who did the appendectomy and the other with my Dr who did the laparoscopy.   However, I had yet to hear back when my CAT scan was scheduled for at Moffitt so I called first thing in the morning to see. Amazingly they fit me in that afternoon.  Unfortunately, I had to cancel both post op's but I felt like I needed to get this scan completed.  Even though I canceled both of the appointments, I still spoke to both physicians.  The general surgeon was very nice.  He seemed to downplay everything.  He wasn't concerned about metastasizing and offered to do the next surgery.  How nice.  The CAT scan was pretty quick and easy. First they start an IV.  (the nurse didn't tell me until after she did it, that the needle is bigger than normal) Then I had to drink these 3 cups of weird, really cold juice every 20 minutes.  They were ice cold and SO sweet.  Once I drank them and enough time when by I went in for the scan.  Having iodine rush into your veins feels a little weird but other than that it was easy.  I just kept my mind full of prayer and positive thoughts.   Monday night our friends Alex and Ashley Poptodorova,who specialize in personal training and healthy lifestyles, came over to help us get rid of any toxins that may be in our home.  We literally threw away so much stuff.

Day 9 (this was a LONG day)
Tuesday's schedule was:
arrive at Moffitt at 7AM to be injected with a radioactive solution  No I didn't glow.
go back at 11AM for the 2 hour scan
appointment with surgical oncologist at 2
drop of labs at 330
Day actually went like this......  After getting the radioactive grossness, Sean and I went home.  We were up a lot of the night before so we just relaxed.  He tried to get some work done and I tried to not glow :)  I was drinking tons of water, hoping to get this crap out of my body as soon as possible.  The scan didn't start until about 1130.  First 40 minutes I layed flat with my arms above my head.  The last 5 or so minutes my arms were shaking.... it was pretty uncomfortable.  This machine just (very closely) slowly rotated around my body.  Then it took two CT scans.  Then it did 4, 10 minute scans.  Medical technology is amazing.  I wasn't allowed to eat in between the injection and scan so I was starving when it was finished. Plus at this point I'm down a few more lbs.  Even though it's almost time to head over to the next appointment we run to the cafeteria. I am shocked at how few healthy choices there were there.  No organic anything.  So much processed, sweet, super unhealthy food. I settled on an apple, a salad with no dressing and a water.  (I'm sure this helped with my weight gain goals)  We waited for at least an hour in the waiting room to see the Dr.  Let me tell you, Moffitt is BUSY.  It's so unbelieveable to see so many sick people... and to be one of them....  So we (Sean, Mom, Dad and yours truly) finally get back and first meet with the surgical oncology fellow.  He was nice.  Did a quick belly exam and asked lots of questions.  My surgical oncologist came in next.  She is so tiny and very nice.  She seemed confident and experienced.  First she told us THAT THE CAT SCAN WAS CLEAN!!!  Thank God!!!  Huge news!!!  She confirmed that the standard of care is a right hemicolectomy surgery as our next step. At this time she presented us with a theory that maybe the carcinoid tumor grew from the margin of the colon down.... which blocked the opening and caused a mucous build up... which turned into this mucinous neoplasm.  It sounded good to me and I was praying that she was right.  This would be only one cancer not two! Moffitt's pathology department will decide if she's right.  She also told us that though she could do this surgery laparoscopically, in my case she felt she should do a vertical incision and really get a good look around.  At this point I feel like do whatever you need to do, just don't let me die.  They luckily had a surgery cancelation on 12/10 and slotted me right in there.  I'm literally excited to have some of my colon cut out.  Get this crap out of me!  So we drop of the labs minutes before closing time.  Sean and I are exhausted.  We have a normal night at home and minutes before Ava is going to be (right after her bath) she turns quickly and slams the top of her head into the corner of the stairway handle bar.  Seriously.  She is screaming, crying and bleeding from her head. I scoop her up, grab an ice pack and off to the urgent care we went.  Luckily no concussion and nothing but a little glue to stop the bleeding.  She's fine.  Sean and I on the other had are nearly sleep walking.  Also, at this point I am forcing myself to eat. I must be strong for this surgery.  I'm like a baby, eating every 2 hours.

Day 10
The only thing we had going on this day was the second part of the octreotide scan.  It was basically the exact same thing except they added on 2, seven minute side head shots.  At first I thought, "oh no, this isn't good, they told me it was exactly the same".  So I asked the technician and he said that everyone gets those two extra scans.  A few hours later I met the same friends that help us purge all of the toxic stuff at wholefoods. We concentrated on household stuff and general healthy eating.  Because of this ordeal I am keeping my sugar intake to an absolute minimum (like only natural fruit sugar)  I want to put back on the weight I have lost and be strong for this upcoming surgery.

Day 11 (which is means I am finally caught up to real time)
So today I'm doing better. I'm trying to concentrate on the known and to stop worrying about the unknown.  I am praying like crazy and counting my blessings.  I feel like it is a MIRACLE that my appendix didn't rupture. That thing was full of two tumors for at least 2.5 years and it never ruptured.  Then I find out that the CAT scan was negative/clean/clear/whatever you want to call it..... No tumors were seen.  Huge news!  And today we received the call that the octreotide scan was also negative/clean/clear!!  That scan is so sensitive that it can pick up microscopic signs of carcinoid tumors and nothing was found.  Thank you GOD!  Any thank you to everyone that has been praying and thinking of me.  I'm feeling better.  I'm still scared.  I still wonder about the future. I am definitely anxious about this major surgery. I feel like the news this week could have been SO much worse so I am counting my blessings.  I have moments of panic and times when I have a self pity party but I guess that's just par for the course.

I'll update as new information comes in.  And I'll leave you with a silly joke.

What will I and a computer keyboard have in common?
We'll both have a semicolon.
Sometimes you just have to laugh.

PS I have not proofread this at all so enjoy the typos and misspelled words :)