High School Sweethearts Separated By Bile Duct Cancer

Ms. Jessica Ivey originally published this post to a Facebook support group page in December of 2014 and sent it to The Bili Project Foundation earlier this month to share with its supporters. Since this was first posted, Jessica’s partner of 21 years passed away from BDC in February of 2015 at the age of 39 years old.

Let’s continue to spread the word about bile duct cancer and create awareness about this silent killer.

One of Jessica’s favorite photos of her and her husband Domonick Ivey.

I’ve started this so many times and deleted for reasons I’m sure everyone in this group can understand. People tell me I need to talk to this out but THIS group has honestly been some of the best therapy. I must start off by saying you all fighting this are MY TRUE HEROES and whatever you do remain strong! I know there are many days you all live in pain mentally and physically, my hope for you all is a peace of mind & a break from all the pain.

So…here goes…our story: My husband was diagnosed with BDC in 2012 at 36 years old. This is after several bouts with severe stomach pain and months of ER visits. We started our journey in August of 2012 and was told his Gallbladder was failing and needed to be removed and something else fishy was going on but no one would just “say it.”

They did some exploratory scopes, placed some stints in for digestive “comfort” and still he remained in excruciating pain. We kept thinking “gosh, this sure is a lot for a malfunctioning GB!” Looking back i don’t know if it was an insurance game (Kaiser in GA is an obstacle to put it nicely) or if doctors had been truly puzzled. They just kept saying they didn’t want to just go in and do surgery w/ out knowing for sure what the something else fishy was.

This went on for 2 mos. until I refused to remove him from the hospital out of sheer stubbornness really. We had been back & forth so many times I was dizzy & he was becoming weaker, eating less, it was a hard time. I remember thinking of him as a fighter (he truly is the strongest man I know). I told him if they would “show him his opponent he will FIGHT this!”

10/02/12 they went in. The doctors performed a 7 hour surgery and confirmed bile duct cancer. This was the first time I had heard of such a thing. I remember thinking “who would tell my husband-how in the world was I supposed to tell him that, he’d be out of the surgery room soon.” For the first time I was panicked. Not to mention who would tell our boys 15 and 4 at the time? The doctor said the great news was when they got to the liver/the pancreas there was no sign of cancer. They reconstructed his BD, removed his GB and we went on about recovering and boy did he recover!

I still question why no chemo or radiation during that time. The Piedmont Hospital team here in Atlanta had been very good to us. So while we questioned it we didn’t push it. In layman’s terms the doctor said to us “there is nothing to do chemo or radiation on.” They couldn’t promise it wouldn’t come back but assured us there was a great hope. One thing I’ve learned about cancer is it’s full of surprises!  They said my husband’s cancer most likely derived from a Choladocal (spell) Cyst that he was born with. They say children these days wouldn’t suffer this cause it would be detected in a prenatal ultrasound. They asked lots of questions about his diet and upbringing. He had some issues growing up but he had an old school grandma that kept his bowels moving and diet clean.

When I met him at 16 this man hardly ate fast food. As we grew older I realized that chicken and a hand full of veggies was about the scope of his diet-no dairy-nothing rich (I think he subconsciously learned what worked for him at a young age and it works for me because I’ve only had to master a few meals through the years!) His main concern was if it was hereditary and we learned most likely not! He was so relieved…still a father of 2 boys and at the end of the day this was the thing in the forefront of his mind, this man amazes me. He’s fighting for his life and still worried about his family. So now to present.

The cancer showed up again in October of 2013. It had metastasized to the lymph nodes.  This was our first time seeing the oncologist although he was involved very much in my husband’s team during the 2012 surgery. He began Gemzar/Cisplatin and he did that until February 2014. Clean scans, we celebrated, June came and he says he knew it was coming back from the familiar pain in his stomach. We now know this pain is his lymph nodes swelling.

The doctor eventually told us that surgery didn’t appear to be an option, again do to the location of the swollen nodes (behind the abdominal wall). He had been in talks with the surgeon and they just didn’t see it beneficial. We moved on and he began his regiment of Xeloda and Oxiliplatin. He’s done that since June and hadn’t bounced back to his old self like he began to do the first regiment.

So now a couple of weeks ago they told us that the scans are showing his lymph nodes enlarging- although it seems we can almost tell them before they can us based on his symptoms. Our doctors at Piedmont are linked with MD Anderson. The specialist at MDA feel the next step is a phase one trial drug called Irinotecan. I wanted to know if any of you have any insight as to its side effects and success?

At this point he’s been on chemo more of the year than not. He’s sooooo strong and proud that I’m sure he wouldn’t even be comfortable with this post. Bottom line is I always questioned the no chemo and radiation decision after the 2012 surgery and I don’t want to look back a year from now and think something could’ve been done differently if I had of pushed a little harder.

As caregivers we become protective and we know them so well. I feel he’s weaker these days and he’ll most the pain meds they have him on I’d be loopy to say the least myself. I don’t want any door left open and stone unturned. Any insight would be great and prayers welcomed.

Love and peace to you all! One of my favorite pics of me & my Mr.! Literally right before this journey began in 2012. My high school sweetheart…my love!

– Jessica Ivey