Continued from The twelve days of cancer – part 2…
Here we are, April 1, 2014. The first day of the month of my mom’s passing. The month when my mom’s health unraveled like a ball of yarn right before our eyes and did so too quickly for us to process real-time or even two months after the fact. The events that took place in April were a blur yet very vivid at the same time.
To piece together the last month of my mom’s life, I reviewed her medical claims, my phone history, emails, and listened to the saved doctor visit recordings on her phone. Listening to the recordings – the ones she insisted we take every time a doctor visited her – was something I did not want to do but during my research, it quickly became obvious that our mental recollections of when things occurred were not always accurate.
April 6, 2014 (24 days prior to passing): My mom was wrestling with her youngest grandchild, Ben, during diaper change time. Her weight loss – approximately 30 pounds since February – is apparent in this photo.
April 10, 2014 (20 days prior): My mom’s last day of work. She called in sick the following day and, unexpectedly, never returned to work.
April 11, 2014 (19 days prior): My mom went to her primary care physician for her “sinus infection.” On a whim, he ordered a chest x-ray. The chest x-ray revealed a large circle in her upper-right lung. The radiologist believed the circle to be pneumonia or another lung infection and her primary care doctor suspected something far worse and ordered a series of follow-up tests.
This was the day when the situation became unsettling and confusing. A circle in her lung? What does that mean exactly? She smoked for decades, could it be lung cancer? No, please, no. Why aren’t the medical professionals on the same page? Why isn’t there any urgency in the follow-up tests? I spent a good portion of this day on the phone with my brother Ryan, speculating, theorizing, and simply trying to get a grip on what was happening.
April 13, 2014 (17 days prior): I FaceTimed with my mom in the morning. She had just woken from a nap, having not slept the night before. During this call, she revealed the extent to which she had not been feeling well and the outcome of the chest x-ray from Friday. She explained that her lips had been really chapped lately and that she “never has chapped lips.” She said that she had a constant feeling of dehydration and dry mouth even though she was hydrating appropriately. She said that she was incredibly tired and exhausted yet was having issues sleeping. She said she had absolutely no appetite and had lost approximately 30 pounds since February. Then she said the words I was hoping never to hear: “I can taste blood in the back of my throat and I coughed up blood once.” That was all she had to say for me to know that she had cancer.
What I didn’t know at the time was that that FaceTime call would be the last time I would hear my mom speak without slurred speech and to see her looking normal, albeit a little worse for wear since she had just woken up.
April 14, 2014 (16 days prior): My mom drove herself to an ear, nose, and throat appointment to have a procedure done on her sinuses where they would try to figure out what was causing her “sinus infection.” The procedure involved putting a scope down her nostrils. When they pulled the scope out of the second nostril, it hit a very sensitive nerve and caused her to faint. She was sent to the emergency room and discharged several hours later.
Within a matter of days, an x-ray had revealed a large circle in her lung and she’d fainted and been sent to the ER. Her health was like a domino effect at this point, one thing after another. We were all very concerned and confused. We were in this gray area where we knew something was seriously wrong but had no answers.
April 15, 2014 (15 days prior): My mom had a CT scan. After the CT scan, the radiologist contacted her primary care physician and explained that he suspected lung cancer with possible spread to the nearby lymph nodes, heart, adrenal glands, and liver. The radiologist explained that there was a mass in her lung measuring 7 cm in diameter and it showed signs of necrosis (dead tissue, indicating a tumor). A lung specialist was also contacted and he immediately ordered follow-up scans to determine the extent of the spread.
Later that day, my mom emailed us a timeline and summary of what had occurred since her x-ray on Friday. The days were starting to blur together at this point and I was having great difficulty being separated from my family during this confusing time. I felt as though my mom was withholding information from me, maybe to protect me and make me not worry.
At the same time, my life was progressing and Peter and I were scheduled to leave for Vienna the following day. I dropped Dexter off at boarding and carried on with my daily activities.
April 16, 2014 (14 days prior): My mom had an appointment with her primary care physician to discuss the next steps given the preliminary results of the CT scan from the day prior. Whether or not she was informed of the details of the discussion that occurred the day before with the doctors, I am not sure.
Peter somberly celebrated his 42nd birthday and he and I hesitantly flew to Vienna, Austria.
April 17, 2014 (13 days prior): My mom collapsed twice after getting out of the shower on her way to her PET scan and MRI appointments. No one knows exactly why she collapsed. Her primary care physician suspected that the tumors in the back of her brain (the balance center) caused the falls. Other doctors suspected she had a stroke. I believe it was a combination of both. Like a champ, my mom got up and went to her PET scan and MRI appointments.
Later that night, her left eye, which had been bothering her for about a week, began pointing to the left constantly. This caused her to be nauseous. We found out later that the reason for this was due to a tumor resting on the nerve of her eye. The quick fix was for my mom to wear an eye patch to help her right eye focus and hopefully decrease her nausea. The longer-term fix was to give her steroids to reduce the swelling in her head and hopefully alleviate the pressure of the tumor on her eye nerve.
April 18, 2014 (12 days prior): At this point, my mom had not eaten for several days – she had no appetite and was nauseous. The official results of the CT scan and MRI came back and my immediate family joined my mom at her appointment with her primary care physician. It was at this appointment when the c-word was said. Her primary care physician was very clear in the fact that it was suspected lung cancer and that it had likely spread to the areas listed above plus the brain (revealed on the MRI) but that they were waiting on the PET scan results to confirm all of this. This day marked the unofficial (again, we were still waiting on ALL the test results) diagnosis but it is the day that we recognize as her official diagnosis.
As I listen to the doctor’s visit recording, I can hear disbelief in her primary care physician’s voice. He said things like, “It is amazing to me that you’d have a tumor that big with no symptoms until six weeks ago” and “I am amazed at, literally, how this [condition] has changed in two days.”
Immediately following the appointment with her primary care physician, my mom was admitted to the ER and then to the hospital.
April 19, 2014 (11 days prior): My mom had a lung biopsy to find out what type of cancer she had. Peter and I took a train from Vienna to Budapest.
April 20, 2014 (10 days prior): It was Easter Sunday and the weather in Minnesota was nice enough to take my mom outside of the hospital for some fresh air and sunshine. My siblings and dad describe my mom as being very alert and in good spirits on this day.
April 21, 2014 (9 days prior): Peter and I flew from Budapest to London. Phew.
April 22, 2014 (8 days prior): The PET scan results were in and my mom was given her official diagnosis – stage 4 non-small cell lung cancer which had metastasized throughout her body. With my mom still in the hospital, I FaceTimed with her and my family and Dr. Katie (oncologist). During the 39 minute call, Dr. Katie said a lot of things (e.g. not a curable scenario, we are focusing on symptom management at this point) but there was only one sentence that mattered. Dr. Katie intentionally looked into the camera of the iPhone and said to me, “I would recommend you come whenever possible in the next couple of weeks when she is feeling good. You want to have a good time when she is feeling good. When she starts chemotherapy, she may not have the energy to sit and spend time with family. So, this would be a good time to come and be with her right now.” It was the way Dr. Katie looked at me and the tone of her voice when she said the last sentence, “So, this would be a good time to come and be with her right now” that allowed me to see my mom before she passed away. She essentially just told me that my mom does not have long to live and that I need to fly back immediately.
The plan from this point forward was to treat her brain cancer with radiation to hopefully decrease the tumors in her brain and “fix her eye.” Her eye was her main complaint, so the focus was on fixing it. She had her first radiation treatment later that day.
I collected Dexter from boarding, booked my flight to Minneapolis, and then proceeded to assemble our newly delivered IKEA bed in an effort to occupy my mind.
April 23, 2014 (7 days prior): My mom had her second brain cancer radiation treatment and was discharged from the hospital. From the moment she was discharged, she stopped eating again (she was eating small amounts while in the hospital). I continued to occupy my mind by assembling our newly delivered IKEA couch.
April 24, 2014 (6 days prior): My mom had her third brain cancer radiation treatment. I landed in Minneapolis around 5pm after a short nine-hour flight during which I wrote the three posts pertaining to our Vienna and Budapest trip as well as the IKEA furniture post. Ironically, I have never had such an immense amount of concentration in my life. I knew that if I didn’t get the posts written, that they would not be written for a long, long time, if ever.
I walked into my parent’s house and saw my mom for the first time. She was laying on the couch, completely exhausted but was still able to hold a conversation. Later that night, she walked around the living room for the sole purpose of getting the blood flowing through the veins in her legs to prevent blood clots. I didn’t sleep a single minute that night.
April 25, 2014 (5 days prior): My dad and I took my mom to her fourth brain cancer radiation treatment. They conducted the treatment and she was immediately admitted to the emergency room for dehydration. I waited at the ER while my family went to a scheduled appointment with her primary care physician. After a very long wait in the ER, she was admitted to the hospital.
April 28, 2014 (2 days prior): The decision was made to discharge my mom from the hospital and admit her to a hospice facility. She was discharged later in the day and transferred by my dad to the hospice facility. The discharge and transfer of my mom were one of the most stressful times in my life.
We opted for a new hospice facility located near my parent’s house. The environment in the hospice facility was quiet and calm and peaceful. The nurses and staff were amazing. It was the perfect place.
My mom was very lucid throughout the day. She told stories and laughed. These stories and conversations would be the last we would have with her.
April 30, 2014: My mom passed away, 12 days after her unofficial diagnosis and eight days after her official diagnosis. Rest in peace, mom.
I cannot imagine the whirlwind you and your family experienced in 12 days. My condolences to you and your family.
Camie- you did a truly amazing job of writing this. What a beautiful tribute to your mom! Thinking of you!!