Topic: " Sally Toad"

Hi Y'all,

I am not sure where to start this post other than to say I am a cholangiocarcinoma survivor of 5 + years.  In addition to being a surviovor I am a wife of 19 years, mother to two amazing-teens one 19 and the other 16 years old, foster mother to a developmentally delayed adult, an aunt to amazing nieces and nephews, sister to two younger brothers,  Nurse Practitioner serving our veteran population, and so on and on... The reason I start with all of these roles is because it has been so important in my survivorship to not let that be my only story.....

With that being said I will share my story of diagnosis and then of when the " ah ha" moment came to me that I can say " survivor" .

It was the summer of 2011 and I was going to take my children to visit my younger brother in NJ for the 4th of July and I was going to be crazy enough to drive by myself instead of flying.  About two weeks before my trip I was at work and had terrible right sided pain with some nausea.  I being the medical provider assumed it was a gallbladder attack.  I had my colleague take a look and she too thought maybe gallbladder but was a bit insistent that the pain was more towards my liver.  I went home and went to bed due to the pain.  The next morning the pain was gone.  I had already made a doctors appointment and thought that if I didn't keep my appointment then for sure i would have another attack while on I- 95 in the heart of holiday traffic outside Washington DC...
So I went to the doctor and she did an ultrasound.  Well that ultrasound did not show a bad gallbladder but instead a mass in my liver. From there it was on with the testing. My doctor ordered a MRI the next day. I knew the minute I came out of the MRI that this was not looking good.... the tech said " you should not worry about anything just enjoy your trip and family.. thats what really matters."  So I frantically waited for the results..... this I believe was the birth of the scan anxiety we all know so well. I waited and waited while getting ready to leave the next day and finally called the doctors office to get the results... the nurse kept telling me that it wasn't back.  I finally pulled my NP card and said I knew for a fact she had the results as the test was stat... and that someone needed to read me the impression or I was going to come to the offie and wait until someone did.  This worked well and finally the doc got on the phone and said she didn't want to ruin my holiday so she was going  to wait until i got back to tell me I had metastatic cancer...... well that was not what I was expecting.  From there it was what we called the " Great Caner Race of 2011. I was sent to see a liver doc asap - from there mammogram, scopes for upper and lower gi, and finally the liver doc called the surgeon because everything was negative. By this time I started freaking out... I couldn't understand how I had metastatic cancer and felt so normal. It didn't make sense.  My surgeon team( heptabilliary)  ended up being one of the best in the south and immediately there was more scans, biopsy, and finally diagnosis. My surgeon then told me he could fix it... that was all that I needed to know. That has been always all that I needed to know.I then was scheduled for a chemoembolization two weeks prior to my surgery and then the right hepatectomy and then radiation with 6 weeks of oral chemo.  Poof... my gigantic tumor " ms. Sally toad " as I like to call her was killed, removed, zapped and warded off by this chaos.  All of this took place in the span of 3 months. I thought I would never have to see this ugly cancer again.  If I got to the 5 year mark I then would consider myself a survivor.... a winner... I beat it.

Fast Forward to August 23, 2015 and I am in the emergency room for what I though a herniated disc with some nerve compression.... the worst pain i have ever felt. I am demanding that someone do an MRI of my back and not give me another steroid or pain pill again.  I had gone several times throughout July trying to get my back fixed.  Because I pulled my NP card as soon as I got there I finally was going to be imaged.  Never expected that Sally Toad had left some tadpoles with her departure.... I had a tumor taking up most of L5 in my spine and mets to my lungs.  The ED doc didn't know how to tell me ...she just handed me the imaging report and occasionally asked if I was ok.... Well.... not really ok for sure... Ended up admitted to the hospital.. on pain meds and high dose steroids so that i could walk.. Had to demand to get my oncologist involved ... as they had not notified him and from  there the games began.... I had immediate radiation to my spine to kill that little guy hanging out and to get me walking and out of pain... I had radiation to a small " menigioma" to ensure it was not cancer and chemo since.  I have to date 27 chemo treatments with gem/cis.

Fast Forward again and I am attending the CCA conference in Salt Lake City. I have brought my best friend and it so happens she is a NP also to make sure we are able to take in all the info from the conference. I am busy listening hard to the speakers but she is out talking to all the amazing people there .  We go up to the room at the end of the day and she reminds me to reach out to some of these folks and that she found someone else with mets to bone and I should talk to her later.....that I should share my survival story.  I looked at her at that moment and laughed... I couldn't stop laughing... might have been the pure stress of everything I am not sure what but I remember telling her.... I don't have anything to share ...I lost... the cancer is back and we are back to step one with Ms. Sally.  Then it was her turn to laugh uncontrollably... like this was the best joke she had every heard... and proceded to say.. of course I am a survivor ... I am still ALIVE despite all the mortality rates and bleak statistics that we read..... I am ALIVE that is what it means to be a survivor.  I just laughed and then turned to tears.... because what a moment to have.... I was still alive ... I was still fighting and winning ... I did not have to go back to step one.... and some folks probably would say I had survivorship going on my 5th year..... It didn't matter that I was fighting again... I had time on my side ... I made it to a full 4 years and was moving into my 5th with no problem..... Hell yes I was a survivor......

From that moment on it has been my passion to make sure the word gets out..... there are those of those that have time on our side.... who have made it past the bleak and outdated predictions... That people being diagnosed with this disease can read somewhere that people do live and are living with this cancer.....

So I aplologize for the long post but I wanted to share my diagnosis journey as many of us have had a difficult time... I also wanted to share my moment of celebrating that I am ALIVE, this cancer has not taken my life from me and that I am a Survivor despite having to pick up the fight again... My plea with my oncologist is just keep me alive one more year.... and so on as medicine is right on the brink of having the answer.... i just need to keep living one more year until medicine catches up.... until that happens I will continue to fight and celebrate my survivorship!!!

Re: " Sally Toad"

Thank you for giving me hope.  My CC was  cut out but small cells came back 6 months later. Not spread anywhere else.On chemo since January this year. Lesions shrinking  slowly. Not sure what is next on the agenda after my  scan in October.

Re: " Sally Toad"

Thanks for a great post, and for being such a great fighter, no matter what Ms. Sally Toad is trying to force on you.

Re: " Sally Toad"

Truly  this is what I need.  Started Chemo the day after my birthday August 30, 2016.  I feel just fine and Chemo is not making me sick (I almost hate to say this like it will make it start).  No talk of surgery or when next scans.  I need to ask more questions.  You are a survivor and your "long" story was music to my ears.

Re: " Sally Toad"

Thanks everyone... I think each and everyone one of us should really think about how we are survivors.  For me there is no thought of giving up.... and I am inspired by each and everyone of you who have shared.  There are more long term survivors out there than we are aware of.  I think this is because the medical literature has not caught up with what is the reality.  People are living and succeeding in having a meaningful life with this awful disease.  It is my vow to somehow put something out there in the literature that will demonstrate this.  There is survivorship with this cancer and by sharing our stories we will hopefully encourage each other and maybe inspire medicine to start documenting that.   Hugs to all my cca fighters!!

Re: " Sally Toad"

As a fellow CCA survivor, I applaud you!  Your energy and desire to make sure survivorship is known is inspiring and I share your thoughts whole-heartedly.  Thanks for your story!