Pancreatic cancer is amongst the top five deadliest cancers. Known as the “silent killer”, it often shows no symptoms until it has reached an advanced stage.
This is my mom, Linda’s story.
Nine days. That's how much time my mom had between her diagnosis and her death. Nine frantic and harrowing days, during which she held on and fought as hard as she could, while her healthcare team repeatedly dodged her only questions: "what stage?" and "how long?"
On Sunday, May 22, 2022, my mom told me she was in the emergency room because she wasn't feeling well and was experiencing shortness of breath. My last communication with her before this had been on Thursday (three days prior), when she'd purchased movie tickets for herself, my sister, Andrea, and I for Saturday, May 28th.
That's not to say this was the first inkling that something was amiss. About a year before this, Andrea and I noticed that she she seemed especially fatigued, and was experiencing intermittent bouts of nausea. We both raised our eyebrows from time to time, but given the non-specific and sporadic nature of these symptoms, we didn’t press her too hard on the subject (and if you knew my mom, you know there was no telling her what to do). I truly believed she may have had an undiagnosed sleep disorder.
When I arrived at the hospital that night, however, I knew this was far, far more serious than a sleep disorder. In addition to the symptoms she'd told me about, she had also lost her appetite entirely, and a significant amount of weight over the preceding two weeks. She was so exhausted that even responding to a text message seemed physically taxing for her. She reluctantly reached out to her boss and co-worker to tell them she would not be making her scheduled work trip to Phoenix the next day. Following several tests, we learned that night that she likely had cancer.
The next few days were full of mixed emotions and frustrations. On Monday, May 23, 2022 my mom underwent several procedures, including a biopsy. She was feeling so much better afterwards that she was asking me for a chocolate frappe, which I happily went out and got for her. Later that afternoon, however, the hospital oncologist shared her suspected diagnosis of a metastatic cancer originating in the pancreas and/or biliary tree. My mom's only questions were "what stage?" and "how long?" The doctor declined to answer, telling us that only a specialty oncologist could provide that information. She did, however, tell us that the only treatment for metastatic cancer was chemotherapy, and that my mom would need to be discharged from the hospital in order to pursue it.
Ready to fight, my mom opted for the chemotherapy. When I arrived the next morning, I learned that at her insistence, she'd been walking laps around the hospital floor with her nurse. "Sitting in bed all day isn't going to do me any good", she told me.
On Wednesday, May 25, 2022 my mom received her diagnosis from an oncology resident. He told us the biopsy confirmed "pancreatobiliary" cancer, that it originated in either the pancreas or the gallbladder, and that they would learn which one the following morning. (They did not learn which the next morning, or any day after that).
This doctor also declined to answer my mom's questions as to "what stage?" and "how long?" Only the specialty oncologist could make those determinations.
On Friday, May 27, 2022 my mom was discharged from the hospital, with follow up appointments scheduled for Tuesday, May 31st (for a chemo port placement) and Friday, June 3rd (with the specialty oncologist). At the time of her discharge, however, my mom's condition had deteriorated to the point where she was weaker than she had been at the time of her admission the prior Sunday. In fact, by Thursday she was no longer able to walk laps around the floor, and no longer had any appetite.
Andrea and I took turns staying with her following her discharge. Saturday came and went without even a mention of the movie tickets she'd purchased just over a week prior. Despite our best efforts, we watched helplessly as her condition continued to deteriorate. Each night, we awoke to the anguished howls of her cat, Yodel, who was all too aware that something was very, very wrong. From the next room, I heard my mom's attempts to comfort him: "you're okay, Yodel, you're okay. I'm not, but you are."
We pleaded with the visiting nurse and physical therapist to reconsider her care plan, but the only suggestion offered was to bring her back to the hospital if she fell. My mom was, of course, incredibly resistant to returning to the hospital. She knew she could not pursue chemotherapy if she was re-admitted, and she was determined to make it to her scheduled appointments.
On Monday night, I sat in the living room with my mom watching a movie on TV. She asked me to make her a Jimmy Dean breakfast bowl – a somewhat recent supermarket find of hers that she really enjoyed. I was so excited she wanted to eat something that I practically sprang off the couch to go heat it up, and was thrilled when she ate some of it. Still, as I went to bed that night I found myself fearing the worst, and came down to check on her at 3 a.m. I found her sitting up in the living room, and asked if she wanted to lie down on the couch. It was too much for her, so I just helped her put her feet up on the ottoman. She then said, “okay, now go to bed” the same way she did when I was a kid. So I went back upstairs, and spent what was ultimately her last night in her home with her in my childhood bedroom.
When I brought her into the hospital on the morning of Tuesday, May 31, 2022, my mom was in great spirits. She was smiling and greeting hospital staff cheerfully, most hopeful and excited that she’d finally made it to the first step in her treatment journey. I received a call from the doctor about an hour later, however, telling me that they were forced to abort the procedure entirely, as her oxygen dipped too low when she was laying down. She was readmitted that night, and perhaps the most forthcoming of any healthcare provider she saw, the emergency room doctor told us, "the cancer is everywhere now." Although she was sitting up, talking, and overall doing much better on oxygen therapy, my mom's cheery, hopeful disposition from that morning was gone.
On Wednesday morning, I received a chipper voicemail from a different hospital oncologist telling me things were "looking stable" and that they hoped to get the chemo port placed and "get her discharged so she can make that Friday appointment." Hours later, my mom was admitted to the ICU. From the time of her readmission on, Andrea and I were both at the hospital each day until visiting hours concluded.
Doctors deployed several treatments in an effort to improve my mom's condition, to no avail. On Thursday, I met the hospital oncologist who had left me the voicemail the day before. Only then did he finally admit (to me, privately) that we were "looking at days." He also told me that we would not learn whether the cancer originated in the pancreas or gallbladder, and that it was immaterial for clinical purposes.
At no time did any oncologist or other healthcare provider answer my mother's only questions as to "how long?" or "what stage?" By this point, it was clear that she would never make it to her first specialty oncology appointment, nor her first chemotherapy treatment.
On Friday, June 3, 2022, the doctors advised Andrea and I that all treatment regimens had failed, and recommended a transition to hospice care. We thus made the excruciating decision to change her "code status" to "do not resuscitate", and to discontinue all treatment, with the exception of comfort measures. She was admitted to inpatient hospice around 2 p.m. Andrea and I sat with her holding her hands, listening to “calming” music, and (individually) saying our goodbyes. We stayed by her side through the very end when she left us around 6:30 that evening.
More than a year has passed, but my heart is still so, so broken. She didn't deserve this. One day, she was planning a trip to the movies, and less than a week later, she was fighting for her life with a terminal cancer. She spent her last days desperately holding on, trying to make it to her first scheduled cancer treatments, where somebody might be able to answer her questions, and perhaps offer some hope. Where nobody would answer her, though, she never had any chance to come to terms with her condition, or say goodbye to anyone -- including her own mother, her brother, her husband, her daughters, her granddaughter, or her friends.
I can't go back and rewrite my mom's story, as much as my mind continues to try. But to quote one of my favorite TV shows, if you can take "the sourest lemon that life has to offer, and turn it into something resembling lemonade", then maybe one day you can provide someone else hope. That is my mission in running the 2024 Boston Marathon with Project Purple, and I know my mom would fully support my sharing her story if it might help someone else.
Please help me raise $25,000 in loving memory of my mom, and to perhaps spare another patient and family from this experience. Your donation supports research for pancreatic cancer detection measures and patients and families faced with this heartbreaking diagnosis.
Thank you for taking the time to read my mom’s story, and thank you for your donation.
Jackie (McNeely) Kawka