My beloved husband, Andrew Shea, was diagnosed with pancreatic ductal adenocarcinoma in August 2016. He had been feeling increasingly sick, so he went to the ER where they discovered internal bleeding. Scans soon showed that a mass on the tail of his pancreas was pressing on his splenic vein. Blood continued to enter his spleen but had no way to exit due to this constriction. Gastric varices began forming as a way for his body to try to remove blood from the engorged organ, but they were delicate and ruptured easily. The blood in his gut from these ruptures is what made him feel so sick and ultimately helped lead us to a diagnosis.
Andrew and I had very limited medical knowledge when he was diagnosed. We chose an oncologist based on who was able to see him most quickly, and before we found Cancer Commons, we chose treatment options based solely on the oncologist’s recommendations.
Thankfully, Andrew was eligible for surgery. Not everyone is that lucky. The surgeon removed Andrew’s spleen and the tail of his pancreas, as well as a tiny spot on his liver that looked abnormal. But our fears became reality when biopsy results confirmed both the mass and liver abnormality were pancreatic cancer.
After healing from surgery, Andrew started the chemotherapy regimen FOLFIRINOX because our oncologist indicated it was the most aggressive treatment available as standard of care. The side effects were brutal and unrelenting. When Andrew’s weight dropped to 107 pounds and he could no longer walk, we stopped treatment and monitored him via blood work and scans.
Despite medical testing appearing to indicate his cancer had not returned, Andrew knew his own body and a small bump under the skin in his belly button did not seem right. Testing showed his cancer had spread in the form of a Sister Mary Joseph nodule. Andrew started a few gemcitabine-based regimens including gem/abraxane, gem/oxaliplatin, and gem/capecitabine. Then, we found Cancer Commons.
I had been consulting with a doctor at the Huntsman Cancer Institute who connected me to Lola Rahib, PhD, Lead Scientist in pancreatic cancer for Cancer Commons. Lola was a godsend. She was the perfect combination of knowledgeable and compassionate. Most importantly, she helped me be the type of caregiver I wanted to be.
I always wanted more. More information, even though I might not understand it all. More treatment options, even though the odds might be low or we might have to travel the country. Lola gave me more of everything I asked, and she did it joyfully. She fought with the same enthusiasm and hopefulness that Andrew and I had. And I have no doubt that Lola gave me MORE TIME with the man I cherish.
Caregivers are important. I quickly decided I was a member of Andrew’s medical care team, not just someone to sit with him or take him to appointments. Well-meaning friends would ask if they could give me a break and tend to Andrew. Just as they could not step in and give the nurse a break, I felt my role was too specific to leave his side.
I am writing this for the patients and caregivers who feel their connection is so strong that no one else could fill that role. I learned so much about managing side effects and reading Andrew’s body language. I learned how to treat his symptoms while they could still be contained.
If you do not want a break, don’t feel pressured to take one! Andrew wanted me to be physically present—being apart made us both anxious, so it truly didn’t give me a break to be away. Listen friends, do what is therapeutic to both of you and do it without guilt. This is the fight of your life—no one else feels how you feel.
You get to choose how to meet your needs. If asking someone to care for your person while you go out to dinner or go to the gym would recharge you, do it! But if staying pressed to your person’s side holding hands is how you both want to take this journey, do it.
Do not let anyone tell you the way you are handling the hardest time of your life is wrong. Obviously, I can’t let you drink excessively or do other harmful things—keep your head. You need it right now. But trust yourself and do the things that make time with your person as special as possible. What that looks like is different for each of us and is for YOU and your person to decide.
In terms of practical advice, here are a few suggestions:
- Write down everything. Carry a small binder with folders for papers you are given, and write down questions, medications, side effects, phone numbers, names of important people—everything. You might need it someday. You will be tired and your brain will not be as reliable as it once was.
- Tell the doctor everything. Doctors can decide what’s important and what to discard. Take out your binder and read all of the little changes you have noticed. The information you give might change the course of treatment for your loved one! You can make your doctor better by giving her/him more information to work with.
- Caregiver—when you are asking friends to bring this or that for your loved one, ask for something for yourself. You are also going through a ridiculously hard thing. Just because you don’t have cancer doesn’t mean you don’t have important needs as well. Please, please take care of yourself and don’t feel guilty for being healthy. Your person wants and NEEDS you to be healthy right now.
- Do not hesitate to reach out to your contact at Cancer Commons before and after doctor appointments. After Lola came into our journey, I did not make a single medical decision without consulting her. Lola was a constant source of information and support for me and Andrew.
- Forgive yourself—this is not the time for blame. I don’t know why you or your loved one has cancer, but I am so, so sorry that it’s happening. Maybe it could have been prevented or caught sooner. I don’t know… But forgive yourself and know that you are worthy and important. Forgive yourself for not knowing how to manage symptoms or the right words to say or questions to ask. This is hard and some things can’t be fixed, even by the doctors. It’s complicated. It’s emotional. You are doing your best. If you feel it’s not enough, please forgive yourself. You are enough.
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Andrew passed away in spring of 2020. In his memory, Rachel is dedicated to spreading the word about Cancer Commons, so many more patients and caregivers can benefit.