My name is Ilene Mastrangelo, I am a 42-year-old widow with a 6-year-old daughter. I was my husband’s caretaker and advocate; here’s our story.
My husband was diagnosed with Crohn’s disease back in 2011. He was under the care of a GI specialist and was being treated for his Crohn’s. Occasionally, he would have a flare up and need to go to the ER for IV steroids and would then be released a few hours later. Life was great for us; we were the typical working class couple with a 2-year-old and two pups at home.
At the beginning of 2015 my husband starting getting bad stomach pains and we both felt this had to do with his Crohn’s. He was in and out of the hospital three times over a period of a month. He even missed our daughter’s 3rd birthday party. The doctors felt he was having a flare up and a small obstruction that would pass. Every time he was released from the hospital over this time, he was still not okay and in so much pain. My dad had major heart surgery at the time and I remember being in the ICU yelling at my husband’s doctor on the phone saying, “Something is wrong, you need to figure it out.”
The third time my husband ended up in the hospital during this period, his minor blockage turned into a perforation and emergency surgery had to be performed. I remember thinking the surgery took a little longer than expected but thought all was well. They told me they took some biopsies but I didn’t think anything of that.
March, Friday the 13th in 2015, was the day our lives forever changed. I was getting ready to go to the hospital when my phone rang. It was my husband and he was crying. I asked, “What? What’s going on?” He said the surgeon just came by and told him he had cancer. We were both completely shocked. He had no family history, nothing like this. I kept thinking, “He’s a young guy, with a young family; why is this happening?”
We were both crying and I was on my way to the hospital. They referred us to the oncologist to get more information. When I arrived, the oncologist had just walked in and the nurses were helping my husband so I was alone with the doctor. She had an awful bedside manner. She asked how I was doing. I told her, “How the hell do you think I am?” Then she proceeded to tell me that he had stage IV colon cancer and that he only had 1-2 years to live. I thought I was going to vomit and I think my face said it all. My husband always looked at me for strength, but at that moment we were both at a loss of words. He was the type of person who would hear one negative word in a sentence and shut down. I knew he was shutting down, so I went into my questioning mode. I asked, “How can this be stage IV if the cancer is not in his liver or lungs, she proceeded to tell me how he has seeding in his stomach lining and apparently this is very difficult to treat. He also had signet cell, which is very aggressive.
That weekend was awful, full of many tears and many questions. What were we going to tell our daughter? Oh my god, he could die, what the hell. I pulled myself together by Monday and knew I had to be his advocate. I had to research and learn more about this disease and treatment options. I had to be positive and strong so he would fight to be with us. I had to keep his spirits up. I was determined to help him fight, kick this disease and be able to go back to that oncologist I met and prove her wrong.
I found the best oncologist at one of the top hospitals in Philadelphia. We determined a plan and when he would start chemotherapy. My husband started chemo at the end of May 2015 and did 12 rounds. He handled it like a champ, if you didn’t know him, you wouldn’t even know he had cancer. He was still working. He would be knocked down for 28 hours after the pump was removed, but was good for the most part. Scans showed shrinkage and his blood markers were all in normal range.
I kept pressing his oncologist to refer us to a surgeon for the Hyperthermic intraperitoneal chemotherapy (HIPEC). I knew this was our only shot to be cancer free. My husband had another procedure in October 2015 to correct something from his March surgery. I was eventually able to convince the HIPEC surgeon to do some exploring with the other surgeon to possibly do some de-bulking at that time. Unfortunately, the surgeon found much more seeding in his lining. He said it was so small that it doesn’t appear on the scans but there was too much to remove and the best thing was to get him back on chemo right away.
This time my husband did not recover as well from surgery. He had bad indigestion and started to get blockages. He started to lose weight because he wasn’t able to eat anything and we had to worry about his hydration. There were a few times back and forth in the hospital. Then in December 2015, the doctors explained he now had some small tumors on his small bowel and that he would continue to get blockages. They suggested the percutaneous endoscopic gastronomy procedure to have a PEG tube be placed in his stomach to relieve the pressure, so he would not keep ending up in the ER. We agreed, thinking this would be temporary. They also started him on total parenteral nutrition (TPN) at this time; again thinking it was only temporary. He finally came home and was adjusting to the tube and TPN.
In January 2016, he ended up in the hospital for two weeks with a sepsis infection. He beat it and was better. Finally it was February and he was able to start back up on his treatments. This time the oncologist added a new drug, which caused him to lose his hair. He handled his first treatment okay and was even able to attend our daughter’s 4th birthday a few days after being done with chemo. He continued for the next few months with chemo every other week. This time he did not handle it as well as before. He was getting sick, not eating, and becoming dehydrated. He was no longer able to work. He was tired all the time and became very depressed. He hated going to treatment because of how he felt after and was just getting beat up. The scans showed he was stable, which we knew was not bad, but also not great.
We were still hoping for HIPEC and I was contacting every surgery across the country and sending his medical info to them. Everyone kept saying no. We kept looking at clinical trials, especially the ones focusing on immunotherapy. Unfortunately, he did not qualify for anything.
My husband was able to take a break for a few weeks from treatment and we went to Disney for a week. We had to rent a motorized scooter for him to get around the parks. Upon returning home, my husband developed another sepsis infection and was back in the hospital. He recovered and was ready to start treatment the beginning of July. During this treatment my husband developed a reaction to chemo and they stopped right away. This had never happened before. He came home and after a few days still did not feel right. He ended back in the ER and was admitted, this time for complications of chemo.
This began the six weeks of utter hell. To make a long story short, after being admitted for complications to chemo, it lead to a really bad reflux. We then tried to adjust his meds, but he then developed awful back and neck pain. He was deconditioned and extremely depressed, plus in pain. Suddenly one day, he coded. He came back within a minute, however the doctors thought he now had developed a heart condition and cardiology was called in. They said the heart skipped a beat, but they didn’t want to give him a pacemaker because of the infection risk.
He kept having these episodes of passing out, and we were both getting scared. This time his vision was starting to get blurry and we knew something wasn’t right. The doctor thought maybe he was having seizures so they called in neurology. We thought he had a blood clot in his head and this was the reason why his vision was going. Finally they did a spinal tap. We knew it could be one of two things: blood clot or that the cancer had spread. We were convinced it was a blood clot. Even the doctors said colon cancer typically doesn’t spread to the spinal fluids in the brain.
Well once again, we were devastated to hear the cancer did spread and we were at the end of the road and out of treatment options. I was able to get my husband home and he passed within 24 hours of being home, surrounded by his family and dogs.
As a caregiver, I spent the last year and a half taking care of my husband: mentally and physically. I had to keep his spirits up and keep him going while researching and trying to find options for him. I had to be a mom to a toddler and try to keep her life as normal as possible. She only knew that daddy was sick and the medicine stopped working. Another awful day telling her daddy was going to die and explaining heaven. I still had to work during this time since I held the benefits and was running on empty. I would cry in my car all the time because I never wanted him to see how upset I was and how scared I was.
After his death, I crashed from exhaustion. I left my job in corporate America because I needed to be with my daughter and she needed me. I kept having flashbacks and questioning every move during this entire time. I kept playing the “what ifs” in my head over and over again. I never planned on being a widow and a single parent at 41; I never signed up for this. My daughter keeps me going and is my strength. Kids are resilient.
I used to believe things happened for reasons. I no longer believe that. I have so many questions. Grief is a roller coaster and hits you out of nowhere: driving in your car hearing a song, walking into a store seeing something or walking in a park. I started my own business and poured my grief into that with hopes that I will be able to help others with my story and be able to open a foundation in his memory this year.