Someone on Facebook called these photos “an invitation into our reality” and I thought that was a really accurate representation of these photos. I think it’s a story that’s not often seen. As a photographer, it’s my job to tell the story, and I’m proud of what story this tells.
This is the hardest thing I’ve ever had to deal with. With that being said, I have learned so much about myself and my wife these past few days. I’ve learned that I take a lot for granted. I learned that I work too much and I don’t take enough time to cherish the gorgeous and strong wife God has given me. I’ve learned that this time is precious and that I need to spend more time with my daughter Lucy. I hope somewhere in here, maybe just one of these photos will touch someone out there and help them realize something so they don’t have to learn the hard way.
“Sometimes God allows terrible things to happen in your life and you don’t know why. But that doesn’t mean you should stop trusting Him.” -Christina Grime
As I was sitting at breakfast this morning, I was overwhelmed with a feeling of happiness and thankfulness. Abigail was sitting right next to me, not hooked up to anything, able to walk on her own and making jokes. I looked across the table and saw my daughter Lucy, happily eating her pancakes. I thought to myself: man, just a week ago we found out that Abigail has cancer and here we are enjoying breakfast together. So much has happened over this past week. Everything that we could be worried about over the course of this past week was taken care of. It just amazed me. God is good.
This is the story of my wife, Abigail, as she was diagnosed with colon cancer.
In early January Abigail had started feeling very weak over the last few months. We figured it was because of our move and because it was our busiest season yet. Abigail was shooting 4 family sessions through the week and we’d shoot an event together on the weekend. She kept getting dizzy and at one point during a shoot had to lay down in the car because she almost passed out. She couldn’t even make it up a flight of stairs without falling over when she got to the top. No matter how many naps she would take, she would be more tired then when she fell asleep. It was about 6 o’clock and I was second shooting for someone about two hours south. Abigail texted me that she was thinking of going to the ER because of chest pain and her mom was bringing her. We found out that Abigail’s Hemoglobin was at a 5 and it needs to be around 11-13 for an adult female. This means that she was missing over half of the hemoglobin in her body. She hadn’t had surgery, and wasn’t bleeding from anywhere. Why was it this low? They didn’t have any answers for us so they pumped her up with 3 units of blood and sent us home with a nice sized hospital bill.
In March, Abigail was diagnosed with Ehlers Danlos Syndrome Type 3. This is a connective tissue disorder and people with type 3 are hypermobile. You can think of your joints as being held together by rubber bands. In a normal person the joints bend tightly and smoothly. In someone with EDS, it is like their rubber bands are stretched out and old, making them Hypermobile and a lot of dislocations end up happening on a daily basis. This is just one of the many issues EDSer’s face, along with very fragile intestinal walls.
In the beginning of May, Abigail started feeling week and short of breath again, even after being told that the Iron infusions are “Working” and had bloody Diarrhea for about a week. We head to the ER once again and her hemoglobin was at 7.5. Where was her hemoglobin? She still wasn’t bleeding other than in her stool gradually and had no other known injuries. They decided to do an endoscopy because of the blood in her stool. They found a tiny ulcer that was not bleeding, and said because of insurance coverage they were not going to do a colonoscopy in the hospital. We were told to follow up and schedule an outpatient colonoscopy and follow up with her hematologist. Abigail called the GI doctor about 8 times in 4 weeks to try and make an appointment, but even after her gas pain and diarrhea got worse, no one was taking her seriously, and no one could see her for an emergency appointment. We were told by the Hematologist that there was “Absolutely no way” this was cancer and that we should keep infusing the iron and wait for the Hemoglobin to rise. The diagnoses thus far was “Some sort of absorption issue”, little did we know there was a tumor in her intestines growing bigger by the day, by every day that the doctors didn’t listen and take us seriously.
All of these visits to doctors and hospitals, tests and infusions, we still didn’t have any answers.
So two Sunday’s ago, on June 5th, Abigail woke up around 6am with terrible pains in her abdomen. She had a fever and 10 out of 10 pain, so I knew something was wrong. I called Kelly, Abigail’s mom and told her that she needed to come pick her up and take her to the emergency room. We were set to shoot a wedding today, so I couldn’t take her, I had to pull myself together and go shoot this wedding. I knew in the back of my head, something was really wrong.
So after I finished shooting the wedding, I headed straight to the hospital in Hope. She was resting and had been given some pain meds to manage her pain. They needed to do a colonoscopy because she was losing blood and they didn’t know why. Abigail had been in the hospital twice this year already for being weak and having really low hemoglobin levels. But we still had no idea why. The doctors said that it was an absorption issues and there was no way it was cancer or anything like that. The next morning Abi was set to go in for a colonoscopy. The prep for the colonoscopy is not fun. They make you drink this nasty liquid that Abi described as “sweaty water”. I slept in the hospital that night with her, helping her to the bathroom as needed.
The next day, she was all set for her colonoscopy. In the back of my head, I really had no idea what they would or wouldn’t find. They took her down at about 1pm. Jeff, Abigail’s dad, and I talked for about 2 hours, which took my mind off of the entire thing. Kelly came back up to the room about 3:30pm and something was off. I saw this look on her face that I don’t think I’ll ever forget. She said “It’s bad. It’s cancer.” It was like one of those moments you read about, when they tell you how their heart sank. Well it’s true. It did.
She continued to explain a bunch of stuff, but my brain drowned out all of that. I left the room to try to absorb the fact that my wife, the love of my life, has cancer.
I felt like I was going to fall over. I asked a nurse who was in the hall way if there was a place I could sit down and be alone. This poor nurse, she held on to me so tight, I’m sure she thought I was going to pass out and drop to the floor.
After a little while, I was able to collect myself so I could get the full story from Abigail’s mom, Kelly. She told me that it was most likely Lynch syndrome, which we suspected. Basically, it is an inherited disorder that increases the risk of many types of cancer, particularly cancers of the colon (large intestine) and rectum. People with Lynch syndrome also have an increased risk of cancers of the stomach, small intestine, liver, gallbladder ducts, upper urinary tract, brain, and skin. Additionally, women with this disorder have a high risk of cancer of the ovaries and lining of the uterus (the endometrium). The body’s ability to repair certain types of DNA mutations is impaired, leading to cancer.
Abigail had an initial 80% chance of getting colon cancer, and 50-60% chance of developing one of the other cancers in her life.
Abi didn’t know yet, she was still groggy from the anesthesia they had given her. So when we told her, she didn’t really react. She said, “Ok, so now what do we do?” and listened as we talked about what we thought would be the next best course of action. She listen, absorbed it and was ok. She was a rock. I was not ok. I asked her, “why aren’t you freaking out?” She said to me, “Nothing is going to change by freaking out. I just have to be faithful at this point.”
I always knew that Abigail was a strong woman. She put me in my place when I needed it. But I never knew she this strong, way stronger than me.
We decided that she needed to be transferred to Penn in Philly, where her aunt had just had part of her colon removed, due to the same problem.
The next day, Abigail was transferred to the Hospital of the University of Pennsylvania (also known as HUP), in Philadelphia. We didn’t really know what to expect, other than she needed to have the tumor removed. The ambulance ride was tough. Abigail was already dizzy and nauseous, and riding backwards on an ambulance on I-95 was not going to be fun. I joked, and just tried to take her mind off of what was going on.
We got to the hospital and got settled. After a while, we had a brief conversation with one of the colorectal doctors on the floor. She told us, that the doctor that we came to see would not be here for when Abigail needed to have surgery. We were all pretty upset. We came here specifically for this doctor because she had operated on Abigail’s aunt. We were told that this doctor was the one who accepted her case. We prepared ourselves for the possibility that we might have to have Abigail transferred, again.
So the the next morning, I called my friends at Irons and Anchors Hair Salon, located in our hometown of Allentown, NJ. I asked if they could send someone down to the hospital to cut Abigail’s hair. I knew that this would put Abigail in a better mood. Meghan came down with a gift bag or hair products from the salon.
Meghan was amazing. She cut her hair, made her laugh, and for 15-20 minutes, Abigail didn’t have to think about anything but this. Afterwards, when she was all done, Meghan would not let me pay for her drive down here, parking and her hair cut.
Later that day, we met with another surgeon, the one who, if we agreed, would be doing Abigail’s surgery. He told us that he recommended that she have her entire colon removed. He also asked if Abigail and I were done having kids. I thought to myself, “ok, I really don’t like where this is going”. He recommended that if we were done having kids that Abigail have a total hysterectomy. Abigail declined and said that we were going to wait and try to have more kids. After our conversation with the surgeon, we felt much better about our situation here and decided to stay and move forward with her surgery.
Rachael, Abigail’s oldest sister, started a GoFundMe campaign for Abigail’s medical expenses. We’ve already received a couple thousand dollars worth of bills from her previous hospital visits and we knew that the this hospital stay would be a significant expense. It spread like wildfire. The campaign raised $15,000 in 12 hours. We were blown away by everyone’s generosity. Our prayers were heard.
“The Lord will provide” Genesis 22:14
That night, Lucy came to the hospital to see us. She is always a ray of sunshine and made us all feel better. Lucy painted Abigail’s toenails and was thrilled to be taking care of her mom.
The next day was surgery prep. Abigail had been on a liquid diet since her colonoscopy. She basically was only allowed to have clear liquids and had to drink that nasty bowel prep aka the “sweaty water”.
Ever since Abigail and I started doing boudoir photography, we’ve been following Jennifer Rozenbaum. Jen is a kick-ass boudoir photographer who loves what she does and empowers women through her photography. Abigail recently went and modeled for Jen at one of her workshops. Abigail had an amazing time with her and came back from the workshop feeling amazing. Once Jen found out about Abigail’s diagnosis, Jen got in contact me and asked how she could help. Jen shared Abigail’s GoFundMe Campaign and mentioned her in her live broadcast on Facebook. It was really cool to see how uplifting this was for Abi.
Surgery Day was here. This is the day I expected Abi to start showing some emotion or nervousness. To my surprise, she was very calm and just ready to start eating again. Up until this point, Abigail had only cried twice. The first time, was when they told her that she couldn’t eat anything after her colonoscopy. Before her colonoscopy, she said that all she wanted was eggs and bacon from Cracker Barrel. So when we told her that she wasn’t allowed to eat anything but clear liquids, she was not very happy. The second time she cried was when there was MedEvac helicopter landing on the helipad at CHOP. Her hospital room was on the 12th floor and faced CHOP, so we had a clear view of the helipad. The thought of a child being sick or hurt and needing to be airlifted to CHOP upset her. We stopped what we were doing and prayed for whatever was going on with this child.
So after all this, Abigail didn’t cry once about having cancer or needing to have her entire colon removed. She was a rock through the entire thing. Her strength gave everyone else in the family strength.
We met with the anesthesiologist who walked us through everything. She listened to us as we talked about Abigail and her medical history and how certain medications affected her. The doctors and nurses came and talked to us about the surgery and if we had any additional questions. The family came to see her off. And then it was time. She was off to surgery.
Waiting is the worst past. I knew that I couldn’t wait in the waiting room the entire time. I went up to Abigail’s room and took a nap. Up until this point, I had been sleeping on hospital furniture and had only been getting 4 hours of sleep for the past 4 nights. So a nap in her bed seemed pretty great. The surgery was supposed to last 5-6 hours, so I had some time to kill. After my nap, I went over to my hotel to check in and drop off a few bags. As we were walking back, my mom called me and said that the doctor was there to give a report.
He told us that she was out an the surgery was a text-book surgery. Everything went really well and without complications. They had hooked up her plumbing again and she would not need a ileostomy bag at all. I felt like a weight had been lifted.
The empty hallway on the surgical floor.
Once she was in the recovery area I was able to see her. She was in so much pain. The pain meds she was given wasn’t working and she was so nauseous. It was really tough to see her like that.
After a tough day of fine-tuning her drugs, her pain level and nausea finally decreased. She was up and moving and all the plumbing that is left is working properly. The surgery was done laparoscopically, so she only has 5 tiny holes. They put in a drain to relieve her abdominal cavity of any excess fluid and blood.
The day after the surgery, we went live on Facebook to update everyone on what was going on with her.
We talked to our daughter Lucy on the phone, and she was sad that Mom was still in the hospital.
Lucy: Mom, are you coming home yet?
Ab: Not yet hunny, just a few more days.
Lucy: That makes me cry. :: starts to cry ::
Ab: Don’t cry baby, it’s ok!
Lucy: It makes me!
She was just so cute. I told Lucy to be strong and be brave. That really resonated with her, but being away from mom this long was just too much.
This was her first trip around the floor. She needed to get up and walk and get everything working again.
Abigail’s first solid food post-surgery! She was so excited to finally be able to eat something solid.
Lucy came to visit! She was so gentle with Abi. She was just happy to be snuggling with mom.
Abi’s sister Rachael’s artwork. The Abdominal Snowman, with matching incisions.
Walking is getting a little easier, still pretty painful.
We missed Lucy’s dance recital. One of Abi’s cousins Facetimed us so we could watch.
We got a visit from our friends Easton and Laura Reynolds from LuRey Photography. Their daughter Bella drew some pictures for Abi.
Out of all the things that we’ve been through up until this point, one of the things that made everything a little easier, was Abigail’s nurses at UPenn. They were amazing. So we wanted to thank them for everything they did and how awesome they are.
Abi getting her vitals checked, hoping we’re going to get discharged soon.
The doctor called us on Tuesday with her pathology report. The doctor said that her cancer is stage two, and had no spread to anywhere yet, including the lymph nodes. She will not need chemotherapy. The surgery removed all of the cancer and she is now cancer free.
Abigail has been diagnosed with Lynch Syndrome. So now, we will have go see a pile of doctors to figure out how to manage this and move on with her day to day life. She will require constant and consistent monitoring every few months.
Overall this is good news, she has conquered this battle. This battle is only one of many. So we ask that you continue to pray for her and the entire situation.