Nothing truly prepares a person for the end of life. We can attempt to convince ourselves by thinking about the end and trying to imagine how we will handle the end, but it falls far short of what it feels like once it happens. What I mean, is that while most of us have had loved ones and pets leave our world, we feel the pain and grief, but we do not feel the total brunt of the loss until the end arrives.
As mentioned in previous posts, Lyn and I were completely open with one another, our family, and friends in that we had no control over the cancer. We were making decisions with her medical team that we felt provided her with the best possible path that would bring healing, but it was extremely complicated. Some decisions were easy, but most were difficult because cancer medication doesn’t just impact the cancer, it impacts the organs and brain, while hopefully killing off the cancer. With a cancer battle, there are no days off. We had to make daily decisions.
After approximately two years into her battle, we had to make a tough decision regarding a change in her medication, since her medication started to lose effectiveness. With her chief oncologist, we arrived at a plan, however, we all knew changing medication provided an opportunity for the cancer to seize the transition from targeted oral chemo, which had done a good job battling the cancer, back to immunotherapy. The hope was that the immunotherapy would ramp up the immune system to attack the cancer. Unfortunately, immunotherapy does not progress through the brain barrier as well, so it wasn’t our desired path, but a necessary change.
The oral chemo medication was taken every twelve hours to block a protein that melanoma cancer thrives on. It was an amazing, but powerful and destructive medication that gave us hope. So, going off the medication was an unfortunate necessity. We knew the possibility existed for a negative result. Lyn’s situation was extremely complex between weekly blood tests, low energy, diminished breathing capacity, liver and kidney impacts, multiple medications, and monitoring for positive or negative changes daily.
Unfortunately, our concerns were realized. As Lyn switched back to immunotherapy, the cancer became extremely aggressive. It truly caught the family and medical team off-guard, and before we knew what was happening, Lyn needed hospitalization due to severe confusion, and a concern for Encephalitis that can be brought on from medication.
At first her medical team felt her confusion was caused by immunotherapy since her MRI was fairly unchanged from months previous. The concern at this point was not rapid cancer progression, as much as a concern of possible Encephalitis. Encephalitis is an inflammation of the brain that causes swelling, confusion, and possible death. This can be common for brain cancer patients on immunotherapy. It seemed plausible for us and checked most of the boxes.
The complexity was compounded, because approximately two weeks prior, Lyn had an additional brain-bleed caused by the cancer. An MRI showed the bleeding stopped, and that the cancer was about the same as an MRI from a prior month. Thankfully as the bleeding stopped, she immediately went back to speech therapy, and showed positive results. However, her progress was short-lived. We thought we were back on track, however, at the same time she was improving in her speech, unbeknownst to us, the cancer was aggressively working in the background.
As Lyn was admitted into the hospital, within an hour a CAT Scan revealed significant brain swelling. At this point we felt it was the medication. After being transferred to a trauma hospital with an ICU for brain issues, an MRI revealed it was not swelling caused from medication. I had read probably 50 MRI reports in the two-plus year battle. I viewed all of the MRI images. As the doctor showed me her MRI, it was evident what I was looking at.
In comparing her last two MRI images, it was evident that the rapid and growing confusion was not caused by immunotherapy or Encephalitis, but it was the cancer rapidly spreading. The ICU doctor was shocked and taken aback at the progression and change in a very short period of time. At this moment I had a chill that took over my body, because without the doctor saying, I knew the time was likely short.
Lyn’s lead oncologist called me within a day, and we had an honest conversation about her condition. He was candid in saying her condition was critical, and she would not likely recover from her condition. At this point we were focused on getting her back onto her oral chemo medication, not as a measure to save her life, but more so to reduce brain swelling and confusion. Unfortunately, we could not get Lyn back on her medication, and we had to make decisions on what would give Lyn the best quality of life and comfort going forward. It was an extremely painful time.
I recall standing in a quiet hallway talking to her doctor, and it did not seem real. Lyn and I had talked about moments just like this, but once this moment came, I was very unprepared for it. I was very focused, but at the same time, very numb, and searched my brain for solutions and possible answers that could create a new path toward recovery. I found none.
For more than two years we were always able to arrive at a new plan, and to strategize and plot a course. I read melanoma research articles, medical journals, and researched futuristic cancer treatment. I talked to her doctor about ideas, or what he thought about an article. I was always trying to find new ideas.
In the previous two years, almost every plan worked to some level. While our plan didn’t result in the cancer miraculously being eliminated, we were able to find a new pathway that gave us hope. As I talked with the doctor I grasped and tossed out ideas. In the end, I knew the doctor was right, and I needed to shift my focus from healing to comfort. As a person of faith in the healing powers of God, I knew short of a miraculous healing, Lyn’s time with us on this side of sunshine was short.
As Lyn’s conditioned worsened, we decided to take her home, and as noted in the previous blog, we decided to bring in hospice.
As Lyn made it home, we had loved ones come over, which included some of her very best friends in life, family, and our spiritual leaders. We played music for Lyn, provided her favorite foods, desserts, and her daily Starbucks Mocha Frappuccino.
As the end approached, we had amazing help from family and friends. People brought us meals and provided much needed support. It was an emotional time, but we are thankful that we were able to bring Lyn home for her to experience the peace our home provided, and to spend time with family, friends, and spiritual leaders loving on her (and our family) until the very end.
Thanks Jeff.