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!

Re: " Sally Toad"

MVP:

Just read through your wonderful post. As posted recently elsewhere here, I too have a had a good run after my initial diagnosis (~4 years), but the sucker has come back. Like your reference to Sally Toad leaving some tadpoles with her departure. But, yes, it has been amazing the developments and alternatives in just four years. To all the survivors out there, let's stay vigilant but keep fighting. We all have much to live for. And let's continue to share what's working in this wonderful forum!

Re: " Sally Toad"

Thanks for your encouraging words.  I am sharing my update today.  you are right we should keep sharing and hoping that it will help others to keep on fighting.

Michelle

Re: " Sally Toad"

I am glad to hear from you Michelle, I was beginning to worry , although many on this forum can be silent for a while, I had hoped you are alright. I have thought about you, it is good to see your post, god bless, Pat

Senescence is a beautiful thing....

Re: " Sally Toad"

Thanks so much.  I tend to do most of my chatting in the face book groups but I am glad to come back on and share my experiences with everyone.  I hope you are doing well also.  I have had a bumpy few months but feeling much better these days.  Still fighting this ugly beast.

Re: " Sally Toad"

Hi Y'all!!

I thought I would come back  and give an update.  Since my last post so much has happened and I feel it is important to talk about for several reasons.  The first is this..........

Yesterday i had an appointment with a new doctor.  He is the founder of a research center that is currently holding about 20 phase 1 clinical trials all of which are immunotherapy. As I was giving my cancer story he was counting the lines of treatment I have received.  He felt comfortable enough to talk to me straight as a medical professional and I am sure the story sounded like a linty of medical terms and professional jargon to my poor sister in law who was attending the appointment with me.  As the appointment continued I started thinking about this journey.  To me it was just chemo and radiation with a side of clinical trial..lol  BUT for the FDA it was a list of what we called failed attempts. I was up to my 6th line treatment by the time the story finished.  I couldn't believe it.. to me it was just different bouts of gemzar/cisplatin.... our normal cocktail for this cancer.  To me there didn't seem so many treatment attempts and then I began thinking what this journey must look like to those who are not living with cancer... crazy.

As everyone knows from my previous post I have had a long journey with this cancer. This August will be 6 years. I know her well.  At this point in time I feel it is my constant life companion.  We live in close proximity to each other and are in constant war.... I knock her out for awhile and then damn is there not a bitty tadpole taking up shop..

I am doing well ... strange to say throughout this journey and it was strange to think that I have failed treatment attempts because honestly it was not treatment failure to come on and off chemo, try a clinical trial, and recently to radiate the crap out of these guys.  To me they are all winning treatments.... I am still HERE.  His recored of failures was my monologue of wins.  To me it was a journey of keeping this beast at bay.  Tucking in Sally's babies and sending them on their way.  And so today I think what will medicine do with a rapidly growing group of stage IV cancer survivors.  For me this has become a chronic health issue.  I am not seeking cure as I know we are not there yet BUT I can live with the cancer I have if we do it smartly.... staying just one step ahead of Sally's babies.  So.... the question is how do you live with cancer....

This is the question we need to explore. Life becomes a constant vehicle of change.  Their are moments of crisis and then times that you take a pause... hold still ..... and then ramp it up again. As treatments progress and new drugs are approved we are going to see that this now small group of survivors are going to grow , going to heal, and finally maybe even see a cure.... HOWEVER we are going to LIVE.throught it all.   As one of my favorite doctor says " we are going to kick the can down the road " until we are there!!

Re: " Sally Toad"

So here is the update on the actual treatments I have received... I

August 2015-- I had SBRT to my spine and a meningioma in my head...( it is not cancerous but a benign finding on MRI)

September 2015 - started chemo- gemzar/cisplatin

December 2015- took a small break for the holidays and to recover ..... was having low Hemoglobin counts and requiring frequent blood transfusions.

January 2016- jumped back on the gem/cis train.  Cancer was stable with perhaps some shrinkage. BUT nothing new..... holding steady.  I also went back to work full time with a gracious work schedule that involved teleworking.

May 2016- oops need a break again .... those damn red blood cells giving me trouble and needing transfusions. Cancer with slight growth but STABLE

JuneJuly  2016- trial of oxaliplatin... thinking it might be easier on the blood counts.
Had terrible reaction... affected my eyesight... a under reported and rare side effect.. My optic nerve was irritated... Stopped and it corrected itself.

August 2016-  back on my old friend gem/cisplatin.

October 2016 - BREAK.... getting ready for clinical trial.

November 2016... off to DUKE and participated in ABBVIE 399.  Well here we are with some growth 17%... not enough to come off trial until BAM!!! I can't see well and I am in the worst pain of my life..... and yes I now am off trial.

January 2017- back to work and having another break... time to think..... I am still stable living with what I have but what to do ......

Feb 2017-- WHY not do SBRT.... first new radiation oncologist freaked out .... NO way ... go home with palliative care.... and maybe a new spot of cancer in my SI joint though it has been there since 2015.  He said I was " too healthy and active ... that he didn't want to see that go away as there was quite a bit of risk in the treatment I was asking for........ WHAT ... to Well..... I wanted to say " You ASSEHOLE... I am going to die without treatment"  What a stupid and uniformed thing to say.... so I hunted down my old radiation oncologist,..... and within an hour of that repulsive appointment I had a YES and not too far away...

March 2017- SBRT to my left lung nodules and SI joint.... Hallelujah!!

March/April 2017- Xeloda 1500 mg BID

May 2017- welcome my old friend back gemzar/cisplatin..... got to kill a little of the cancer since xeloda was not ready for the battle...URGGH

June 2017-  waiting to complete SBRT to my last lung mass... this one is tricky.... taking lots of doctors thinking outside the box..... but yup we can do it... however oops..... those damn polly wags.... two too small to measure spots in my liver.... DAMN.  What to do now.....

July 2017 --- clinical trial... Against my own advice i am going.... those things make me so damn nervous.... Agreed with great new doctor that we will radiate my lung.... its becoming a problem and then I will graciously leave my liver lesions for acceptance in trial... versus zapping those too.  Strange to think I am saving some cancer ... that it is needed for treatment ....

And so that is where  I am these days.... living successfully with cancer...my friend and bitter enemy... NO FAILED ATTEMPTS Only SUCCESSES !

Michelle

Re: " Sally Toad"

Michelle,
Wow! What a journey and warrior, and you don't give up and you make the decision based on your needs and not always to the advice of a doctor.  You seem to have a positive outlook which helps.  That's the unfortunate side effects of chemo the lower RBC and WBC and platelets which makes it tough for the body, and should be stopped as this can do more harm than good.  You seemed to get the breaks as needed.  I can't wait for the day when gem/cis is not the standard treatment and there are other options where the patient doesn't have to wait and can make the choice from the first appointment.

Re: " Sally Toad"

I LOVED reading your posts today Michelle! 

Sending you a big hug from New York

-Karen

Re: " Sally Toad"

Thank you so much for sharing your story!

Re: " Sally Toad"

Good for you Michelle, you are a champion! Keep fighting and keep being your own advocate, You have made all the right choices. May your success continue, Pat

Senescence is a beautiful thing....

Re: " Sally Toad"

Michelle,

I agree with Hercules.  You are an inspiration! 

Debbie

Re: " Sally Toad"

Michelle....echo all the others, you rock.

Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER