When Dr. Vassalli told us that malignant tumor cells were found in the biopsied lymph node of Ian’s neck, it seemed that all the world should have stopped at that moment and taken notice. But it did not.
For our family, life was in slow motion for about half a day as we processed the impossibly bad news. Then, just as suddenly as we were given the life-changing information, we were thrust into a whirlwind of appointments, conversations, and decisions.
Within a few days, we found ourselves shuffling through notes written on bits of paper, within the margins of books, on the back of brochures, and on our electronic notepads. It quickly became an overwhelming task to keep track of who was who and what came next.
To keep our sanity, I grabbed a yellow college-ruled notebook that was in my desk drawer and added tabs to segment the pages into sections for “Notes,” “To Do’s,” and “Appointments.” I consolidated all our notes and talked to Ian about the new plan of attack. We agreed that anytime he or I would speak with a doctor, nurse, insurance representative, disability coordinator, or any of the myriad of others now in our life, we would add notes to the notebook.
Within days, our “to do” list ballooned to more than 50 action items. We referenced the yellow notebook frequently and soon it became an anchor in the middle of the chaos. It sat on the dining room table, a centralized location with easy access for either one of us at any given moment. Over the months, the section that filled up the fasted was the one tabbed “Notes.” We ran out of pages in the front of the book and had to start a “Notes Part II” following the appointments tab.
Today, those notes serve a chronicle of Ian’s cancer journey. A weave of notes that switch back and forth between my handwriting and Ian’s. Using the notebook, we coordinated with utmost efficiency. When the various medications became impossible to remember, I turned to the back-side of the very last page of the notebook and created a list with Rx names and their purposes.
After a few months, the note-taking slowed down and we settled into somewhat of a routine with Ian’s chemotherapy and radiation protocol. Things appeared to be going well with favorable first evaluations and the notebook took a rest on the dining room table.
However, on August 6, we got the worse news anyone could get when we found out that the cancer had spread.
The doctors gave Ian only “days to weeks” to live. They sent us home under hospice care.
We were catapulted into a whole new dimension of stress as we became Ian’s primary caregivers, administering IV medications, completely changing his (our) diet and pursuing opportunities for alternative medicine.
The yellow notebook was plunged back into action, capturing the names and contact numbers of a whole new cast of characters and outlining tasks now frequently delegated to family members instead of only doctors and nurses. At that point, the notes were only in my handwriting, as Ian applied 100% of his energy to regaining his strength so that he could undertake a new course of action.
Page after page, the notebook once again filled up with notes that outlined recommendations from the hospice team and Ian’s new naturopathic doctor, insights from caring family and friends who offered a wide variety of alternative approaches, notes about visits from family and friends who came to simply spend time, pray and even sing worship songs in our living room, discussions with MD Anderson and Cancer Centers of America, notifications from social security disability, and so on. The yellow notebook even traveled with us to the Big Island for his concentrated naturopathic treatment.
Then the notebook traveled back home and was set back onto the dining room table as Ian began to decline over what would be his final week.
On Saturday, October 8, 2016, Ian took his last breath in the wee hours of the morning. After the sun came up, I received a call from Mililani Mortuary. I was operating in a deep fog. The person on the other end wanted to schedule a time for us to come in to make final arrangements. Barely able to think, I believe it was muscle memory that caused me to reach for the yellow notebook to jot down the information, which I knew I could never retain on my own. I held the phone with one hand and flipped through the pages of the notebook with the other. I flipped and flipped until I finally reached a page with space for notes. We talked about coming in on Tuesday to do this and that, and then we talked about possible dates for Ian’s Celebration of Life. He reminded me to check with our pastor on his availability and other helpful tips. As I wrote down the last few things from our conversation, I got to the bottom of the page in the notebook.
We hung up and I set my pen down on the table. I looked at my new notes in the notebook and turned the page. It was then that I realized that these notes were taken on the very last page of the 70-page notebook. On the back-side of the page I just filled up was the list of medications I had created months ago. I flipped the last page of the notebook back and forth several times to be sure what I was seeing was real and then took a deep breath.
I had come to the very last page of the yellow notebook on the very last day of Ian’s life.
I felt an overwhelming sense of God’s presence in that moment, as he assured me that while we were blindsided and devastated by Ian’s passing, He knew that this would be Ian’s arrival date in heaven.
God also knew I desperately needed a sign on the darkest day of my life, so he gave me that gift – that important reminder that GOD IS IN CONTROL.
Seven months later, it is still a very, very difficult journey for our family. But I keep that yellow notebook where I can see it and remember that God knew that Ian’s cancer journey would span 70 pages of a yellow college-ruled notebook AND his bright and wonderful life would number 23 years, 1 month and 10 days.
Job 14:5 (NLV) A man’s days are numbered. You know the number of his months. He cannot live longer than the time You have set.