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.

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.

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;)

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 :)

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.

Peace,

Sean

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

The 

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

Wow

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

surgery

Just met with the surgeon...surgery 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!

surgery

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

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....

surgery

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. 

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. 

Jenesa 

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 :)

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 :)