5 YEARS

November 19, 2017

Five years ago today I was told I had two types of cancer, both in my appendix. I was a 31 year old, healthy mom of two.  And 5 years ago I was completely blindsided by this news. I spent that day in shock, completely rattled by the most intense fear one can experience. I remember praying to God to just let me live 5 more years. I had no idea how much my life was about to change.

I endured 3 surgeries, one requiring a vertical incision that left a large scar down my abdomen. I went to countless doctors appointment, have had countless blood draws and scans every 3-6 months followed by semi-annual then annual scans and now finally every two years.  I had my most recent scan in September of this year which was No Evidence of Disease.

I changed the way I lived. I learned how to breathe through life's toughest moments. I learned that fear is only a lie that robs us of life. And I learned how to live big every single day.

We've moved 3 times.

I met the most amazing man almost 3 years after my divorce.  I took my time and waited patiently for the right guy and I am thankful every day that I found him.  We were blessed with a baby on July 2nd. My heart burst with gratitude as I introduce Easton, my sweet little miracle.

image by http://stacylarsenphotography.com

images by https://courtneybiancophotography.shootproof.com

I look back on these last 5 years with a sense of peace.  No one deserves to go through cancer but I know that without going through it, I wouldn't have the life I have today.  I am so happy.

Miracle

A surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency. 

That's the official definition of - Miracle.  And as silly as it feels to claim that I have experienced a miracle, I don't know what else to call it.

I'm pregnant, expecting a perfect, healthy baby this summer.  Jeremy and I, as well as Ava and Liam, are thrilled.     

I was told that I had two types of primary cancer, both in my appendix almost 4.5 years ago and with that was also told that my right fallopian tube was completely clogged (from the mucin from one of the tumors) and my left tube was partially clogged.  Take that, mixed with the scar tissue from the 3 surgeries I had in the following 13 months and the chance of conceiving naturally was unlikely. Then, add in a divorce. I had always wanted 3 or 4 children but I came to terms that additional children just wasn't in the cards for me.  And I was completely ok with that.... Ava and Liam have been my world. 

I am so lucky to have met Jeremy. We have such a good relationship and are really happy together.  We both talked of expanding our family but knew that it could be challenging without medical intervention, not to mention I'm 35 now.  

Yet somehow, the stars aligned.  In the midst of life's crazy timing and against all odds, we have been so blessed with a new life.  Our little miracle baby.   

4 years

It just dawned on my that tomorrow is November 19th, which means it has been 4 years since my diagnosis.  Any let me tell you..... these 4 years have been packed full of the craziest roller coaster ride of life possible. But today I am healthy, happy and living life every single day.

There was an appendix cancer walk in Tampa a few weeks ago.  It was so nice to connect with other survivors and see friends that I had met through a private appendix cancer Facebook group. It's so interesting that there's really no rhyme or reason between the people who have been diagnosed.... no common age, gender, ethnicity..... so bizarre.  My mom, Sister, Uncle and Bob, Jeremy and the kiddos all walked with me.  It meant so much having them all there.  Here are a few photos from the event.

The walk happened to be on Dr. Bartlett's birthday and the 4 of us are all his patient and all doing well.

Official good news! **UPDATED**

Dr Bartlett received my scan disc and scan report last week and I received a call yesterday that I am NED (no evidence of disease)!!  I (Of course) read through the two reports and both said no evidence of  metastatic disease.  I am so thankful and excited to not think about "it" until the next scan, which won't be until next August.  

Almost time again

It's almost scan time again.  I cannot believe it's been (almost) a year since I had a scan.  That.Is.Crazy!!  There was a time were I wanted to be checked every three months and could barely make it 6 months without worrying myself to extreme emotional anxiety.  But, life has been so good. 2016 has been very busy but so full of happiness and newness and excitement.

The highlights:
-Ava and Liam are great. They're growing up so quickly and blossoming into these amazing people.  I love them so, so much.
-Work is good.  I'm in a new position which is more clinical and more responsibility. I am in procedures with physicians and often find myself witnessing a patient getting diagnosed with cancer. It rocks me every single time.
-I have a boyfriend.  We've been together 6 months. I feel lucky to have met a man that is so wonderful.  He's funny and smart and we have the best time together.
-Everything about my life is so good right now. Today I have this life that I never could have expected a few years ago.  I have the best of friends; many longtime friendships but also many people I didn't know 4 years ago or barely knew.  My family is amazing. I have my health and my children are happy and healthy. I have a great job.  I have been able to travel. I am still so humbled by how fortunate I am.  I give thanks every single day. I am truly a lucky one.

So scan day is August 8th.  If I stop and really think about it, I'm very nervous.  This is technically my year 4 scan.  That's a big milestone.  I definitely have some anxiety about it BUT I'm not thinking about it.  Not because I'm trying not to but because I have learned that thinking about it and worrying about it does NOTHING.  I intend on enjoying July and the first 7 days of August.  I'll  do the scan on 8/8 and go from there. I feel very confident that I am healthy and cancer free and all is good in this body of mine.  As always, send some prayers my way in August and I'll update with the results.

Ava's sweet story

It's interesting to be monitored so closely. I imagine that if everyone had routine scans and tumor marker blood work and all the other random tests I have done, most people could relate to what I have gone through and will continue to go through indefinitely and most people would have occasional "things" show up that are benign. I recently had blood work run looking at all sorts of things but I was most interested in 5 tumor markers and 1 urine test.  CEA, CA-125, CA19-9, Chromogranin A, Serotonin and 5 HIAA (the 24 hour urine test) CEA and CA19-9 are broad GI tumor markers, CA-125 is pelvic/abdominal and Chromogranin A, Serotonin and 5 HIAA are all specific to a Neuroendocrine Carcinoid.  Great news is that CEA, CA 19-9, CA 125 were all "normal" and the lowest or close to the lowest they have ever been.  As for the Carcinoid markers,  2 of the 3 are VERY sensitive and can give a false positive from eating a variety of foods, drinking alcohol, tea, coffee and taking certain medications.  I do my best to stay away from the restricted foods (like avocado, banana, walnut, tomato, coffee, etc) but it's difficult AND they don't know everything that gives those false positives.  The Serotonin level and the Chromogranin A level both came back in the normal range and are both blood tests.  The 5 HIAA 24 hour urine test came back slightly elevated.  Normal is <6 and mine was a 10.  My local oncologist was certain that it was a false positive so I didn't freak out... until a couple hours later.  Luckily my freak outs now a days are very controlled and non emotional but I've been battling fear, again.  I understand that things will show up occasionally and that it is most likely nothing!  But it's hard to not have a min pity party that I have to deal with this.  I'm blessed with this amazing life that is currently the best it's been and I selfishly don't want any speed bumps.  Dr. Blanco, my local oncologist wants to wait and retest in August when I have my next scan and recheck for all of the other tumor markers. Surprise, Surprise, I've decided to get a second opinion.  I made an appointment to meet with Dr. Strasberg at Moffitt.  He is the Carcinoid specialist I met with after I was diagnosed and he is one of the best Carcinoid doctors in the USA.  I just want his opinion before I sweep things under the rug for 7 months.

Life has been so great though.  December was so much fun.  It was my first holiday season in years that I didn't have to deal with a scan, blood work or anything medical and I got to enjoy the festivities.  I had my munchkins this year on Christmas Eve and Christmas Morning.  They both woke up at 3:45AM on Christmas morning so we opened presents when most people were sleeping.  It was really cute.  January has flown by and was also full of fun.  This past weekend Ava and Liam met the man I've been dating  (J) and Ava did the sweetest thing I have ever seen.  We were at Busch Gardens eating lunch.  J loves Busch Garden's bread pudding, so I tried one bite of and didn't like it.  When he asked why, Ava immediately said, "I know why".  She turned to me and said, "Mommy, may I tell him your story" and I said, "of course".  She then said, "When Mommy was younger she didn't eat organic and ate a lot of sweets and sugar.  And then she got the cancer  She was very sick and very sad.  But now, she eats organic and doesn't eat sugar or sweets very often"  J said, " and now she's all better" and Ava said, "yes".  My eyes filled with tears.  It was really emotional to hear her perspective of what happened and that she remembers despite it being 3 years ago and her being 4 (almost 5) when it all happened.  I hate that she has that memory but I'm so thankful that we've had 3 more years of happy memories and many, many many more years to come.

2015 ----------> 2016

Happy New Years everyone!

What a year this has been for me.  2015 was a year of personal growth and little journeys. It sounds ridiculously morbid but it's so humbling and emotional when you live through years you at one point thought you wouldn't experience.  After a very busy 2014, I decided to soak life in at a much slower pace.  I stayed in Tampa more and made new friends, strengthened existing friendships and spent a lot of time by myself.  I learned to live in the grey.  Rather than being consumed by living and being a certain way, I acted on what feels right.  This year is ending on such a high note for me.  Lots of great things are brewing and happening and I am excited for what will be going through my mind when I type this post next New Years Eve.

Cheers to a happy and healthy 2016 filled with laughter and adventure.

3 years

3 years.  36 months.  1095 days.  I look at those numbers and cannot believe that much time has gone by since my entire life changed.  But, it has been an amazing 3 years/36 months/1095 days.  11/19/2012 my seemingly perfect life slapped me in the face.  What a humbling lesson I was given that day.  It took some time to pick myself back up but once I did, my life was not longer similar to going through the motions but instead so full.  I am so grateful for every single day.  I have been given 3 more years to love and cherish my two beautiful children.  I am in awe of the love I have for them and every day I spend with them I acknowledge that I am so blessed.

 12/2014 skiing in Vail 

 

1/2015 horse back riding in LA near the Hollywood sign

3/2015 DC with my babes

 3/2015 NYC 

4/2015 my birthday luncheon with my gorgeous mom

5/2015 a festival with my sweet angel

5/2015 beach day with my love

yoga retreat in Puerto Morales, Mexico

5/2015 Israel with my sister

6/2015 family dinner

8/2015 with my mom right before my last scan in Pittsburgh

11/2015 Family photo by the talented Abby Griffith

http://www.theagriff.com

and one more by Ms. Griffith

http://www.theagriff.com

Thank-you for 3 years of well wishes, prayers and positive thoughts.  

yeah!!

Not only did the jejunal intussusception go away but the scan was no evidence of disease.  My scan in May showed that I had jejunal intussusception.  This was the first time anything abnormal presented since my diagnosis in Novemeber 2012 so it was really tough to maintain a positive, optimistic attitude since then.  I am SO thankful I managed to have a great summer because yesterday those magical, beautiful words were said to me by my specialist..."your scan looks great, everything is perfect and no more JI".  There are no words to describe the level of relief and euphoria I felt at that moment.  It's so humbling to receive that news when I know the patients in the rooms surrounding me are likely very sick.  It's a very surreal moment.

I had the scan around 2 and got to the appointment at 230.  We had to wait to see Dr B until after 5!  It's crazy how busy these cancer hospitals are.  My mom and I basically skipped and danced out of there and the second we got outside I received a frantic phone call from my sister.  She got home with Ava and Liam at 6 and found no Callie and my back door wide open.  I had some workers at my house at 10 and they must have accidentally let her out.  It was a horrible, sinking moment.  I could hear Ava crying in the background and I was totally helpless.  The worst part was Callie didn't have a tag on her collar.  Sean and I pass her back and forth and she recently got a new collar and her tags hadn't been added to it.  I even noticed earlier in the week and said out loud "I need to get you new tags!"  We blasted social media pages, lost doggie sites, craigslist, anything we could think of.  I live near two busy streets and I feared the worst but thank goodness a lovely couple picked her up around 3pmwhen it was pouring and tried to find us.... But since we didn't know she was missing until 6, they dropped her off at the humane society.  I picked her up as soon as I got back to Tampa and she came home with new tags AND a microchip.  We are so thankful!!

Needless to say yesterday was a day of high highs and a really brief low low.

I am so grateful for all of the positive thoughts and prayers.  I felt completely calm on Thursday and I know it is because I was wrapped up in all the light that was being sent my way.

BIG WEEK!!!!!

I remember thinking "I have to wait 3 months to get answers and clarity?!?" back in May after my last scan and now the week is finally here. This summer has flown by and has been absolutely wonderful.  I have made the best out of having to wait for answers.  I made a decision to have the best summer possible and to maintain a positive attitude and I think I did a pretty good job;) 


I'll be working today and tomorrow and then I fly to Pittsburgh Wednesday with my mom.  I am so thankful she's coming with me.  I need to look at the schedule again but I have the CATscan around 12pm on Thursday and then an appointment immediately after with Dr. Bartlett to get the results of the scan.  Truthfully, I am nervous.  I am doing a great job dealing with the emotions, fear and anxiety of the unknown but I am a little scared.  I have kept myself busy this past weekend with close friends, fun activities and anything that makes me smile.

Please keep me in your prayers this week.  I (very much) appreciate positive thoughts, white light and any encouragement sent my way.  I will update this blog when I'm in Pittsburgh.

my attitude is gratitude

Hello Friends,

A little less then 3 months after I was diagnosed with cancer another neighborhood friend was diagnosed with stomach cancer.  She was 46 at the time. I remember going to visit her in the hospital as soon as I found out. I stopped by home goods to buy her a soft blanket because that was my favorite gift that I received while I was at Moffitt. She and I spoke about how unlucky and unfair it is to go through this when life seemed so perfect.  Tragically, Donna passed away on July 14th and her funeral was yesterday.   I was a little overwhelmed between the rain,  seeing so many of our mutual neighborhood friends that I don't see as often because of the move from the divorce and knowing that it could have just as easily have been me. I know that's a silly thing to even think but this is the second funeral I've attended in less than a year due to cancer taking a life too soon.   But, my attitude is gratitude.  I am beyond thankful for my life and getting this second chance.  My heart is humbled when I think about how lucky I am. We're all lucky in our own way and I acknowledge this blessing every day.  Tomorrow isn't guaranteed to any of us.  We are in charge of our own happiness.  We must choose to see the bright side, to live life despite the struggles thrown our way and to enjoy every single day.


Yesterday I celebrated two of my closest friend's wedding day. It was a magnificent celebration of their love and an absolute blast!    Their wedding day gave so much brightness and joy to my day and I feel so grateful to have been a part of their day.

slight change of plans

I missed a call from a (412) number this morning.  I immediately knew it was someone from Dr. Bartlett's office.  It's amazing that just seeing those 3 numbers makes my stomach drop.  The voicemail was from the scheduler informing me that my August 6th appointment needed to be rescheduled.  Insert a big eye roll here.  I completely understand things come up and schedules need to be changed but it's a super-big inconvenience when flights and hotels have been booked and days have been taken off work.  This not only effects me but my mom as well.  BUT....... it's just the way the cookie crumbles sometimes.  I was able to reschedule the scan and appointment with Dr. Bartlett for just one week later then originally scheduled. My mom was able to move her schedule around and she will now be joining me in Pittsburgh. I'm quite relieved I don't have to go by myself.  Plus, she's pretty awesome and fun to be around;)  Just 38 days until I can breathe a little easier.

I spent the holiday weekend with my babes.  We spent a good part of the weekend in the sun at the pool, beach or local parks and markets.  It was a beautiful weekend.

67 Days

Happy June 1st!!  Crazy that we are almost half way through 2015.  This year is flying by!!

I'm 67 days away from answers to my last scan.  I had a rough 7 days after the scan, then I was doing much better and I'm back in a bit of a gloomy mood.  I am still optimistic I am fine and that this is all just a fluke but fear is fighting its way back into my mind.

I'm going to use the next two months as an opportunity to concentrate on me.  Lots of reading, exercise, cleanse like eating, meditation, yoga, being outside, staying grounded and most importantly surrounding myself with the ones I love.  I was with my babies all weekend and will be with them for most of this week!  My best friend is flying in town next week for 3 nights too.  It's taking a lot of energy to remain positive and not let fear run my life so I will do whatever it takes to keep my mind right.

May was a month of travel for me.  I had an amazing time in Mexico and Israel but I'm looking forward to staying local for the summer.  (except for two work trips to Boston and Chicago).  Israel was a whirlwind.  7 total days away, only 5 in Israel.  Tila and I had a blast.  Tel Aviv is an amazing city.  The beach is amazing!  I loved visiting Ein Gedi!  Such a surprise for me.  The Dead Sea was an experience.  And Masada was unbelievable.  I enjoyed seeing the old city in Jerusalem too.  Here are a some photos from our trip.

At Tel Aviv Beach

Ein Jedi waterfalls

Ein Gedi

Dead Sea

off to dinner

Turkish Coffee in old Jerusalem

On top of the gate of the old city

at Masada

at Masada

with our awesome tour guide Inon!

Western Wall

in Jaffe

quick update

After thinking about the upcoming CTscan in August nonstop for almost a week I decided that I will fly to Pittsburgh to UPMC to have the scan and will see Dr. Bartlett face to face the same day. My awesome mom will be coming with me ;)  This way I will have answers the same day.  If I did the scan in Tampa I would have to get my oncologist to order the scans (which can occasionally be difficult) then I'd have to wait for the local radioligist to read the scan (and this is only preliminary since they are not specialized in the specific cancer) then I'd have to wait to get my hands on the disc and report, then I'd have to overnight the disc and report then I'd need to wait to hear from someone at Dr. Bartlett's office. For those of you who know me, you know I'm not very good with waiting.  I'm a do'er and I like to get information quickly.  I move at a fast pace and flying to Pittsburgh fixed all of the above. 

I had my local oncologist appointment today. Good news, all tumor markers are normal.  When he walked in he said something along the lines of "scan looked perfect"  Of course I questioned him about the "telescoping". He is not concerned, feels like it is totally transient and will resolve on it's own.  I told him of my plans to go see Dr. Bartlett given his (Dr. Bartlett's) opinion on the MRI. We had a lovely conversation about my current health, happiness and a positive outlook on a long life ahead.  My favorite part of the appointment was when he drew out what our cells do..... we concentrated on T-cells which branch off and form NK cells or natural killer cells.  He then told me to take 3 minutes a day and to meditate on my NK cells charging throughout my entire body and killing anything that is abnormal.  He said the NK cells are like Hyenas, they are literally beasts that destroy foreign cells.  I LOVE THIS.  I believe 100% in the power of intention and often invision organic food fueling and healing my body and lately I have been channeling the amazing amount of prayer and light you all have been sending me straight to my body.  I am so thankful that my oncologist also believes this does work. 

I am feeling good.  I had a few rough days but I think I've sorted through all the emotions and fear.

Positive thoughts

Easiest to just type away....... I spoke with someone from Dr. Bartlett's office.  Major kudos to them for following up with me so quickly.  Initially she called with great news, no disease scan again in 6 months but when I started asking questions we realized Dr. Bartlett hadn't reviewed the abdominal portion of the report or scan.  THIS IS PROOF AGAIN THAT AS A PATIENT, YOU MUST BE YOUR GREATEST ADVOCATE.  She had to call me back because he had to evaluate that report, which happened to be the area of concern.  This wasn't his fault but who ever scanned everything in did so incorrectly.  Whatever.

She called me back in less then in hour with news that I dread hearing.  The good: there is no apparent signs of the cancer being back.  Like, no mass or obvious tumor which I am incredibly grateful for.  But the bad: an area in my small intestines are telescoping (imagine a telescope going in) This could be totally transient and a fluke.  It could also be from the scar tissue that is likely in there from the 3 abdominal surgeries.  It could also be carcinomatosis, which is a super fancy word for cancer.   A Mucinous Neoplasm is a tricky cancer.  It's very hard to detect on scans which makes this extra frightening and brings back horrific memories from 2.5 years ago.  It's easy to say it's scar tissue, which is what she said it is likely from but fear is a powerful thing and just the 3 minute conversation has knocked me down a little.  But I will process through it and be back to myself as fast as possible.  I know I'm strong and healthy and no matter what will be ok.

So what does this mean..... They recommended a CT scan in 3 months with oral and IV contrast of my pelvis and abdomen.  This is different because I typically have MRIs (because there's minimal radiation with MRIs and a ton with CT scans) but CTs can give a clearer picture.  Maybe I should just switch to CTs.  Why 3 months.  I don't officially know but I'm assuming it's because this telescoping can resolve on it's own so to do the test now wouldn't give my body time to fix itself.  I asked a bunch of what if questions but those are useless until we know what's wrong.

As far as how I've been feeling.... I feel great.  I'm so happy and feel overall really good.  There are things that I notice if I look at myself under a microscope but I can never tell if it's something I need to be concerned over or if I ate something that upset my altered GI system.

This telescoping does put me at an increased risk of a bowel obstruction.  This would be AWFUL.  Painful, miserable, scary and life threatening.  I've had no issues and intend to keep it that way.

Please pray that this is nothing but a fluke and that I stay healthy.  I appreciate any positive thoughts, prayers, white light and good vibes you want to send my way.  Invision me healthy (Jenesa's Journey: Invision me well: )

Thank you in advance :)

scan results

I have unofficial results but haven't spoken to my oncologist or surgical oncologist yet.   I have an appt with my oncologist on Tuesday 5/19 and sent my surgical oncologist my scan and report today. I hope to hear from him by Friday.  It appears there are no signs of tumors but questionable "other" things that may need further investigation.  It's taking a lot of energy to not panic.  I'm doing ok and will worry when it's time to worry.  I'll update when I speak to one of the two doctors.

Happiness

I am emotionally flooded with gratitude, love and feeling completely reenergized.  Today is Mother's Day and I happily spent the day at the beach with my amazing mother and beautiful kids.  It was a perfect day.  The water was crystal blue and still.  Dolphins swam extremely close to where we were swimming.  It really was the perfect day at the beach.

Yesterday I returned home from a week in Puerto Morelos, Mexico.  I signed up for a Yoga retreat months ago on a whim,.  Nourish Your Soul with two incredible women as the retreat leaders.  I figured, why not?  I went into the week not knowing anyone and with very few expectations.  What I received was an incredible experience filled with relaxation, amazing yoga, emotional and spiritual healing, laughter, new friends, delicious food and many other non-tangible gifts.  I left feeling emotionally lighter.  I returned to the same life that sent me away extremely stressed and tired yet I feel completely optimistic and free.

Tomorrow I go in for blood work/tumor markers and Tuesday is my scan.  It had to be rescheduled due to incorrect orders.  The nervous feeling is somewhere in my mind but I have zero feelings of stress attached (if that makes any sense at all)

Here are a few photos from Mexico:

This was my favorite spot in the house!

Speaking of house, this is Casa Om.  

Two of the amazing women I met.

From the Gratitude Ceremony on the last night. 

 The entire group at the Tulum Mayan Ruins

I will post the results of the scan and blood work Wednesday or Thursday.