More than a diagnosis – Lora’s Story

On a sunny Tuesday afternoon in August of 2018, NPF Central Pennsylvania Chapter Chair, Lora Kelly reached an important milestone; five years of remaining pancreatic cancer-free! She and her family and felt triumphant to have reached this life-giving milestone. As she reflects upon all of the treatment she’s endured to reach this cancer-free celebration, a far greater storm, unbeknownst to her, brewed in her near future. By sharing her cancer journey, Lora hopes to honor the courage of other cancer warriors, inspire survivors to keep fighting, and motivate scientists to keep searching for better therapies and a cure for pancreatic cancer.

Several years ago, in 2011, I had endured three bouts of acute pancreatitis over a two year period determined to be idiopathic in nature. The doctors followed a pseudocyst throughout those two years and finally biopsied it. That pseudocyst revealed itself as a rare, benign mucinist cyst, genetic in nature, presenting in women ages 30 to 50 years old. The cyst needed to be removed via a Whipple surgery due to its potential of becoming cancerous. The doctors were excited to have found the cyst in the precancerous state. As a nurse, I had some grasp of the complexity of the Whipple surgery. As a patient I felt scared; no, terrified. However, I received consolation from the knowledge that there was no cancer, just a benign cyst with a cancerous potential requiring a big surgery to remove it.

So my family and I went to Johns Hopkins where I endured an eight hour Whipple procedure. My children at the time were 13, 14, 16, and 18 years old and all present along with my husband and sisters. My family sent me into surgery with a lot of laughter, love, and prayer. The scene was much different when I awoke from surgery. My family, soberly present at my bedside, seemed intensely concerned. When I asked how surgery went, nobody seemed to want to answer. All of the silly jokes and light heartedness pre surgery were gone, and the air in the room felt heavy. My husband, trying to look brave, but evidently worried, was tearing up. My children, each one glassy eyed and fidgety, also looked troubled. My youngest child stood crying. My sisters looked stricken. “What happened?” I demanded. “What is wrong with everyone?” After some cajoling my beautiful husband took my hand and said “Lora, they removed the cyst, but they also found a malignant tumor that none of the imaging detected. You have pancreatic cancer.” Apparently, shortly into the surgery, a malignant adenocarcinoma present on the head of my pancreas was detected and removed along with the mucinist cyst. So the hope of the doctors’ had passed, as cancer was most certainly present in my body. I had pancreatic cancer.

I was 50 years old, active, healthy, working, caring for my family, completing my master’s degree in nursing, and busy with friends and community. Every cancer patient remembers the moment when they are told that their life has changed forever. I decided immediately to fight and felt that God gave me the interior strength to do so. My perspective – that mucinist cyst saved my life even if it did take two years to biopsy and remove. I would not waste a moment on ‘why me?’ Instead, I asked, “What do we do next?” Hopkins immediately enrolled me in three trials.

First, Stereotactic Body Radiation Therapy (SBRT) where I had to lay still 45 min a day for five days to receive a lifetime dose of radiation to my pancreas. I was alone with the machine on one side of a three foot lead wall while clinical onlookers remained safely on the other side. I went from leading a normal, busy, healthy life, to being alone in a lead lined room emitting life threatening radiation.

Next, 12 rounds of FOLFIRNOX (Leucovorin, Fluorouracil (5-FU), Irinotecan, and Oxaliplatin) chemotherapy which I completed on time, on dose; I am proud of that. I ended up in the Emergency Room (ER) with every treatment due to intractable abdominal pain. Chemo days required 4 h of driving round trip and 8 h of multiple infusions at Hopkins in their chemo pods. While chemotherapy proved to be lifesaving, the side effects were distressing to endure with countless complex side effects such as nausea, anemia, anemia, immune system compromise, dehydration, pain, mouth sores, loss of appetite, and so much fatigue. I became a spectator of life, rather than a participant. I lost my strength, my hair, my beautiful coloring, my energy, and my enjoyed good health. I did not however lose my spirit or determination to fight.

Finally, I participated in a vaccine trial at Johns Hopkins from 2014 to 2018 where I received six irradiated pancreatic tumor cell vaccines every six months paired with low dose chemotherapy. The painful vaccines were intended to teach my immune system to recognize and destroy pancreatic cancer cells. My daughter Magdalene, a Physician Assistant student at King’s College, once said “the treatment should not be heavier to carry than the diagnosis;” and she is exactly right. Every time I had to go for those six injections my anxiety would mount.

At my last vaccine treatment in the fall of 2018, shortly after I reached my five-year milestone of being cancer-free, my medical oncologist said that I could now receive vaccines every nine months instead of six; and that I could be scanned by MRIs (less radiation exposure) instead of CT scans. My husband and I practically skipped out of that appointment feeling elated. Maybe with this great news, I could make myself stop living scan to scan, a common problem amongst cancer patients, and relax a bit. We were both so excited.

Literally the day after my husband and I had ‘skipped’ out of Hopkins with our great news, my oncologist called to tell me that my Ca 19–9 pancreatic cancer tumor marker, routinely <20, elevated to 1890. There had been a smaller elevation the previous spring 100 s to 300. In a month I would be rescanned to determine the source of the elevation. I did not think much about it. I had my first MRI and it was clear. The elevation of the tumor marker must be a fluke. I just reached my five-year cancer-free mark. I was just told I can get treatment more infrequently. There cannot be anything wrong.

So with a little bit of angst, but mostly calm, I went to Hopkins a month later and received a CT scan. The next day, on my birthday – November 1, my oncologist called again. When I saw her number appear on my phone I was immediately concerned. The birthday lunch I was enjoying with a friend faded to the background as I said “Hello, this is Lora.” The next words from my oncologist were “Lora, the scan is showing metastasis in multiple locations, the cancer is back. You have stage 4 pancreatic cancer.” She went on to say many other things about mediports, and chemo, and …. the cancer was back….stage 4 pancreatic cancer….What? Wait, what? I thought I was cancer free? Mike and I just skipped out of your office –how could this be happening? And what is treatment? Chemo? Again? I don’t know if I can do that. It was really hard the first time. I only survived it because I knew it was 12 times. But chemo indefinitely? How does anyone do that? I was devastated. I started looking at my children wondering if this was the last Christmas together, would I see my son graduate high school, would I see my other sons graduate college, would I get to know my stepdaughter’s baby, would I ever get to see my daughter work as a Physician Assistant? The scales that I thought were lifted from my eyes from my five-year cancer battle fell away in multitude. I realized how comfortable I had become as I enjoyed so many clean scans and good results. But now, with one phone call, I had just become a next level cancer patient.

When my husband and I sat in my oncologist’s office a few days later and asked what my life expectancy was, she replied, “On average people live less than 12 months.” What? Can this really be happening? How does someone process information like that? The treatments are difficult enough, but I have to process the reality of a possible shortened time on earth as well. It is too much. My oncologist also said she was hopeful for me to have a longer life than the average. She started me on a course of low dose chemotherapy that she was having some good results with. My regiment was Gemcitabine, Docetaxel, Xoloda, and Cisplatin. We later learned that I have an ATM gene mutation that responds well to cisplatin, which I was already on as part of my protocol.

It is difficult to convey the assault of information cancer patients must receive and manage. I kept perseverating on the many patients we lost in the pancreatic cancer support group I facilitated over the past four years and wondered which pathway to death would befall me. The earth under my feet turned to jagged boulders and a rocky plane. How could I have stage 4 pancreatic cancer? I needed some time to get my footing. Once I could breathe, I knew I would fight. As we told our children this news, each one had the exact same reaction. “Mom, I am so sorry you have to go through this again, you can do it, we will help; you’re strong.” I definitely did something right if their first thoughts were for my wellbeing and not their own potential loss.

Am I allowed as a stage 4 pancreatic cancer patient to think about my future? Yes. Yes I am. My kids were nearly all in college, our oldest just had a baby, and Mike and I can see retirement. I was so grateful to have gotten our youngest son from 13 to 18 years old – but I need more time with all of them. I am sure that countless people on this journey feel the same. We all need more time. I had to make a battle plan. I knew that the same God I had trusted to get me through the past five years and my whole life would be ready to get me through right now.

My medical oncologist started treatment nearly immediately. I went through five months of low dose chemo at Hopkins and my tumor markers have trended downward beautifully. I am now getting ready to start a PARP inhibitor trial at the University of Pennsylvania (UPENN) in which a PARP inhibitor is paired with an immunotherapy infusion. I have a wise homeopathic doctor who helps me with supplements that compliment my treatment. I have wonderful doctors at Hopkins and UPENN. I have met with other stage 4 cancer patients who were beating their respective cancers and adopted some of their nutritional and spiritual practices. Daily I pray a prayer I wrote and meditate upon from scripture specific to God’s healing in my life. I am building a tool bag to sustain my life. I am a second career nurse (first career as an engineer). I never imagined that my medical training and experience would serve me on such a personal level. I wonder often how nonmedical cancer patients navigate this complex journey. My life erupted with the news of this metastasis and I am doing everything humanly possible to fight as I plan on a complete healing. I had to make a decision about that – was I going to believe that I would live or die? I choose live.

I need God on this journey as I am nothing without Him. I also need my family, friends, doctors, community, golden doodles (we have two), and myself. Fighting cancer is definitely a team sport. I am working. I am exercising. I am eating right. I am praying. I am resting. I am taking care of my family and letting them take care of me. I am emotionally honest. I practice joy. I laugh often. I am saying yes to help. I am seeing a counselor because I need to. I am even trying to train for a half marathon in the fall. I am hoping. I plan on being healed.

Cancer patients endure the severest of treatments to fight for our lives; we are the bravest patients brought to the humblest places due to what we must withstand to become survivors. The cancer journey holistically challenges the human capacity to remain hopeful in the face of grueling treatments, chemical side effects, and difficult therapies. Please think about what this patient population is asked to endure. As for me, the earth under my feet feels less sharp as I engage in the battle. Daily I endure the side effects of treatment. I am not just a cancer survivor; that is only part of my story. I am a whole person striving to be a productive citizen through my work, study, care for my family, myself, and for my community. The scope of my life goes well beyond cancer. I would ask that you remember that about cancer survivors. We exist as whole people who carry an extra load that requires us to fight daily for our lives while attempting to live fully and bravely. I am grateful for the work of the Controlled Release Society (CRS) as CRS has such great potential to improve therapies and treatment for so many cancer patients. Thank you for that. To the amazing cancer patients who fight to survive, keep fighting and have great hope.

How are you sharing your pancreatic cancer journey with the community? 

My husband and I have committed to paying forward the kindnesses shown to my family and me during treatment by saying ‘yes’ to anyone who would like me to speak at an event, or needs to talk with a patient, ‘who has been through’ this journey.  As a result, I have spoken locally at Relay for Life events, cancer support groups, and cancer awareness dinners. More broadly, I have spoken at the World Molecular Imaging Congress in Philadelphia (WMIC, 2017) as well as the Controlled Release Society’s Conference (CRS, 2018) in Manhattan.  Both venues afforded me the opportunity to share my journey to large (800-1200) international audiences of research scientists. In sharing my story, and attempting to honor the stories of other warriors in this battle, I am helping these researchers to put a human face and experience on the important work that they do. Many have tweeted and emailed me to say they have been impacted by these talks and now have a sense of urgency to find better therapies. I have been invited to travel to Germany in October of this year to speak to another group of research scientists at the ICONAN conference (nanomedicine and nanobiotechnology researcher scientists). Additionally, I will be traveling to Basel, Switzerland in May of 2020 to lecture at the CLINAM Summit, again to many scientists of which some Nobel Laureates will be present. I think this crazy pancreatic cancer journey has somehow turned me into a motivational speaker for scientists!

What advice would you provide to patients who are going through this or those that have been recently diagnosed? For caregivers and friends, any advice on how to support patients? 

My advice to anyone recently diagnosed and journeying through cancer treatment is to not be consumed by the disease. Do not let terror and fear rule you. Stay off the internet. Do your best to get second opinions from large educational institutions. Let people help you; remember this is a season of life, not your whole life (same for caregivers). For friends, I have really good advice for you. Never say “let me know if there is anything I can do.” A cancer patient will not pick up their phone and say “Hey, remember when you said…this is what I need….” It’s too hard and uncomfortable and we are already living a hard and uncomfortable life. Instead, say something tangible like, “I stopped by the store and picked you up some groceries, here you go” or “here’s a gift card” or, “ I made you supper, may I drop it off at 5:00?” or “I hired cleaners to come to your house, is Thursday or Friday better?”  We do not even realize how much help we need, so please friends, offer tangibly what you are able to do for your friend enduring treatment versus making general well-intended statements. And finally, to all, if you have your faith, immerse yourself in it. If you have been tentative towards God and faith in your life – work it out. There is no greater sources of love, healing, comfort, and grace than that we find in our relationship with our Maker – Whom by the way, wants every single one of us well; of that I am sure. You will always be given exactly what you need when you need it. You are not alone on this journey.

Having cancer has not stopped you from living life! How have you spent the summer of 2019? 

I traveled to Europe this summer with my family because I wanted to introduce our children to their extended family. My parents are Italian and we have many relatives from Italy. I probably took this trip 5 years sooner than we would have as we wanted to wait for all of our children to be finished with college. However, if cancer has taught me anything, it has taught me to understand the preciousness of life and memorable experiences. We had a blast traveling from town to town, meeting and spending time with wonderful relatives. The children met all generations of their extended family: the young, the old, and the older! I also made a side trip to Lourdes France to participate in their full immersion healing baths, and prayer, as well as traveled in Spain with my family. I try to remind people all of the time – we still are who we are – whole people with lives and contribution – we are never just cancer patients.