A “Stupid Story” by: Laura Aguiar Garibay for Rare Disease Day
SC: Full Name and where you are from:
LAG: Laura Aguiar Garibay, Grandview, WA
SC: What do you do or what do you want to do?
LAG: I am the Assistant Director of the Office of Financial Aid & Scholarships at Heritage University
SC: Patient/Survivor/Caregiver or combination?
LAG: I am a Patient/Survivor
SC: Canceranniversary?
LAG: I celebrate the day I was correctly diagnosed with Neuroendocrine Cancer (January 10th) as my canceranniversay.
SC: Do you celebrate a notable cancer date? If you do which one? “National Cancer Survivor Day”, “World Cancer Research Day” etc
LAG: I celebrate a few days: National Cancer Survivor Day, Neuroendocrine Cancer Awareness Day and Rare Disease Day.
SC: Tell us your story:
LAG: I guess you can say that my story started many years before I was diagnosed. Ever since I was a child, I suffered from stomach issues. It was not until around 2012 that the issues got worse. No matter what I ate, I was always sick to my stomach. I went to the doctor and they did bloodwork and stool samples, but everything came back normal. They said I probably just had a stomach flu. The next issue I started to have was wheezing, cough, sneezing and constant runny nose. I was told by doctors that these were all symptoms of allergies and was given medication to treat the allergies. Then I started to have chest pains. Once again, doctors ran tests (bloodwork, EKGs, etc.) and once again, they did not find anything wrong. This became a routine. I would go to my doctor’s office with symptoms and they would do the normal bloodwork, more EKG tests, etc. and nothing would ever be found. This went on until fall 2015 when my Primary Care Physician came into the exam room with a psychiatrist and they told me that it was time we had an important talk. They told me “depression can manifest itself in many different ways and it seems that your body’s way of manifesting it is through your stomach and chest pain issues”. They prescribed me antidepressants and set up therapy sessions. I was on antidepressants and saw two different therapist for a little over two years. Although I came to appreciate therapy, none of this made my symptoms any better.
On January 4, 2018, I experienced the worse stomachache I have ever had and was not able to eat anything all day. Yet, I was very sick to my stomach. This day, I finally decided to go to the ER. Once again, all the tests they ran indicated that there was nothing wrong with me. After I explained to the ER doctor how long I have suffered from stomach issues, she asked if I had ever had a CT scan done. I said no so she ordered one. 30 minutes later, she came back into the room and by the look on her face; I knew it was not good. She sat in front of my spouse and me and said that the scan showed that there was a large mass on the tail end of pancreas and several on my liver. She said by the look of it, I did not have very long and would need to be transferred to another hospital right away.
At the new hospital, the first doctor who stopped by my room was the Medical Director. He asked me many questions about my symptoms and afterwards he said, “I don’t think you have pancreatic cancer. I think you have a type of Pancreatic Neuroendocrine Tumor (PNETs) called a VIPoma. It is rare, but your symptoms do not align with those of pancreatic cancer. We will have to do run a certain panel of test (chromogranin A and 5-HIAA) and do a biopsy to confirm this, but this type of tumor has a much better prognosis.” Hearing him say that, brought my spouse and I a glimmer of hope and comfort. On January 10, 2018, I got the call from his office confirming that the tumor on my pancreas was a PNETs which meant that I have Neuroendocrine Cancer. The Neuroendocrine system is the system that regulates the hormonal activity in the body. To help my body regulate the system, I started receiving Sandostatin injections every 28 days. Within 3 months of being diagnosed, my spouse and I moved to the Pacific Northwest so that I could be seen my a specialist.
The first time I met my specialist, was the first time I truly understood how rare my VIPoma really was. When he came into the room, he brought two residents with him. They all shook my hand and afterwards my doctor said “do you know how many doctors in the world got to shake hands with someone with a VIPoma today? — Three and we are all in this room!” He went on to explain that Neuroendocrine Cancer itself was rare, but a VIPoma was the “rarest of this rare group” (1 in 10 million).
In April of 2018, my specialist removed the tail end of my pancreas, spleen, gallbladder, pieces of my stomach, intestine, colon, 34 lymph nodes, and he did a liver debulking all in one surgery. They managed to remove over 90% of the tumors in my body! After my surgery, the majority of the symptoms I had been having for years went away! The chest pains it turned out where being caused by the tumor on the tail end of my pancreas, which was pushing into my diaphragm that was pushing into my heart. My allergies are gone. No more depression pills. Although I still see a therapist every two weeks because I found so much comfort in it.
After surgery, I had one good year of scans. No new growths, my disease was stable. But in June 2019, my scan showed that I had a new tumor and a portal vein thrombus in my liver. This meant I had to start chemo right away. After three months of chemo, a CT scan showed that my body was not responding to the chemo. I had several new tumors on my liver and I developed a second portal vein thrombus. At this point, my specialist decided to “pull out his ace card” and recommended me for Peptide Receptor Radionuclide Therapy (PRRT). PRRT is a new form of treatment that has shown great results for individuals with Neuroendocrine Cancer. In PRRT, a somatostatin peptide (or protein) is combined with a small amount of radioactive material and once inside the body, this radiopeptide bonds with the cancer cell and destroys it. My specialist says it’s like setting off small nuclear bombs in your body. At the end of January, I had my first PRRT treatment and will have my second at the end of March!
SC: What is the biggest lesson you have learned through this experience?
LAG: The biggest lesson I have learned through all of this is the importance of mindfulness. I think that we spend so much time worrying about the future that we forget to live in the present. I also feel that we spend so much time focusing on our physical health that we forget how important it is to also take care of our mental health as well. For that reason, I no longer let things like work stress me out. The work will still be there tomorrow. So it is okay to go home at 5pm and focus on my family or myself.
SC: What would you like to say to someone going through what you have gone through or are going through?
LAG: I would say that this will be the hardest chapter in your journey. There will be times when you want to break down, and that is okay. It is okay to not always be okay. Do not shut people out. Those that stick around for your journey truly do love you and want to help you and this experience will bring you closer. Create something like a bucket list and start doing planning and doing the items on it. This will give you something to look forward to outside of treatments, surgeries, doctor appointments, etc. And lastly, cancer will be apart of your journey, but it does not define who you are. You do.
SC: What do you do that brings you most comfort and joy?
LAG: I wake up every day and I go to work. I work with a truly wonderful group of individuals. When I was diagnosed with cancer, they cheered me on. They visit me in the hospital; offer to go to treatments with me when my family cannot, they split up my work when I am too sick to come in, take care of my pets when I have to go see my specialist; they bring me a huge cake to celebrate my canceranniversary every year. I honestly don’t know what I would do without them. Seeing them every day makes me happy.
SC: What motivates you to keep going, smiling, fighting?
LAG: My spouse and our beautiful pets.
SC: Any music, movies, books, art that have inspired you during your journey?
LAG: Music has always been an escape for me. I love indie rock (Kishi Bashi, The Shins, The National Park, Andrew McMahon in the Wilderness)
SC: Do you have a favorite quote, mantra or saying that has helped you during your journey?
LAG: “Life is 10% what happens to you and 90% how you react to it.” — Charles R. Swindoll.
