My sole purpose is to convince you, who is suffering, terrified, and/or exhausted, to make one of the hardest decisions you will ever make. It will also be the best one, though you won’t know that until after you make it. If you think you are ready now, I implore you stop reading and call Hawai'i Care Choices at 969-1733. If you are clinging to the notion that you can somehow manage the suffering and terror and exhaustion, please read on.
My wife, May, was diagnosed with breast cancer in 2005, at age 39. We also learned that she was BRCA2 positive, which meant that, genetically, she had an increased risk for a variety of cancers. She had four surgeries that year (a mastectomy and a reconstruction on each breast), and then a hysterectomy in 2006. She had brain surgery in 2012 for an unrelated vascular disorder. Finally, in 2015, after being diagnosed with pancreatic cancer, she had a Whipple procedure, wherein they remove some of the pancreas, small intestine, stomach, and other miscellaneous parts.
We learned after the first surgery that she had a terribly low tolerance for anesthesia; each surgery resulted in 24-48 hours of nausea and vomiting (the nurse in the neurosurgical ICU at Brigham & Women’s Hospital told me she’d never seen anything like it). The Whipple required twelve days in UCLA Medical Center. Two months after the surgery, she began a 6-month course of chemotherapy, which finished in March 2016. She stayed relatively healthy for about 2 ½ years. Then things really got bad.
We designed and built our house, a project that began in 2014. Sometime after she laid out the initial floor plan, May added a sunroom to the front. That was her room, and by hers, I mean that was the room she expected her hospital bed to be put in. After the BRCA2 diagnosis, she knew she was destined for an untimely—and probably unpleasant—death, and she wanted to be able to see the sun and feel the breeze while it happened. It is so important to understand that, if she had to die, May desperately wanted to do it at home. I had always taken care of her, through the seven surgeries and the chemo, and I was good at it. I had emptied drains and bedpans, helped her through countless hours of nausea and vomiting, showers and hair-washing, and wound care. And I had been through all this once before: my mother died of ovarian cancer, at home in a hospital bed, surrounded by family. If my wife, who had given me an amazing 23 years, and who had already suffered so much, were to die, I would do whatever I could to fulfill her desire to do it at home.
We moved into the house Thanksgiving week, 2017.
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CA19-9 is a test that checks the level of pancreatic cancer antigens in the blood. Throughout May’s 3-year ordeal, her tests had never come back higher than 20. On November 7, 2018, after not quite a year in our new home, May had a blood test. The result: 160. There had been other signs: increasing bouts of diarrhea and unexplained nausea, some loss of weight and stamina, and some random pains. But hope springs eternal, and we spent a month wishing it were, somehow, just an anomaly. She did the test again the following month: 384. It takes about a half-second to read that number, and another half to register how horrible it is. One second to go from hopeful to desolate. We got the results on December 7, a Friday; on Sunday, the real pain started.
So much of the ensuing chaos needs to be skimmed over for the sake of readability. Multiple CT scans and MRIs; an agonizing trip to Oahu for a PET scan; an excruciating radiation treatment; numerous doctor’s visits that frequently left us knowing less than we did beforehand. The PET scan, however, revealed the problem: bone metastases, in her femur, spinal column, and pelvis.
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For nearly two months I helped her walk, eat, drink, medicate, bathe, and desperately try to sleep. I had to create a spreadsheet to manage her regimen of oxycodone, ondansetron, prochlorperazine, promethazine, lorazepam, olanzapine, and others. Then, multiple times per day, I had to decide whether I should wake her for her next dose (and interrupt her elusive sleep) or wait until she woke (and risk letting the pain and nausea overwhelm her). We made 3 middle-of-the-night trips to the emergency room for IV fluids and meds.
If she sat or lay still, the pain would come, so she would walk, but by January she needed help walking any distance, and she could only walk for a few minutes before she was too exhausted to stand. For the last 3 weeks at home, she rarely slept more than an hour at a time, usually much less, and so, of course, neither did I. For the last 2 weeks, she could neither sit down nor stand up on her own, nor could she shower by herself. Miraculously, she only fell one time, but once was enough.
I watched my brilliant, sexy, headstrong, vulnerable wife, her wits dulled by medication (and, perhaps, what they refer to as ‘disease progression’), slowly disappear within herself. There were no tears, anger, or self-pity; there was little emotion at all. I spent much of her last week at home crying quietly beside her while we walked in circles around the room; she rarely noticed. I have never been so alone in the company of another person.
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There is, of course, a process to enrolling with Hawai'i Care Choices. Please, just do it. Learn about the services and get registered in their system. If you never need them, no harm done… but if you do, they will be ready for you. I started the process on January 4, and May began receiving weekly visits from a nurse.
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The night of January 22, May woke more than ten times (I know this because, for some reason, I made notes of our sleep schedule that night). We would be up between 15 and 40 minutes. I would get her settled again, then try to sleep myself… and soon she would wake. I hope never to be so tired again. One more day; then, the morning of the 24th, while I made coffee in the kitchen, I finally admitted to myself that I could no longer go on. When May got up, I told her that I thought it was time to switch to Hospice care. She immediately agreed—I realized later that she had arrived at that conclusion independently, and she had been waiting for me. I contacted Hawai'i Care Choices, called my father-in-law, and helped May pack a bag. Around 2:00 that afternoon, May moved out of her home, just 14 months after we moved in, and I drove her to Pohai Malama. By 5:00 she was essentially free from pain and nausea, and she stayed that way for the next 13 days. I was able to be with her, but also, finally, mercifully, to sleep.
I don’t want to mislead you… those 13 days were incredibly difficult. And I won’t share details because every experience will be different. But every experience is also similar (no matter how much you want to believe yours isn’t), and the staff at Pohai Malama are familiar with the changes a person goes through in their final weeks and days. You cannot put a price on the value of their experience… and it will cost you nothing.
In October, for our 20th wedding anniversary, we had been snorkeling off Maui. Less than four months later, on February 3, 2019—a Sunday—May fell asleep for the last time. The next morning, the nurse came in to take vitals. Her pulse did not register on the machine, so she had to do it manually. I asked what it was; the nurse said, “One hundred seventy-six.” If you are shocked at a resting heart rate of 176, you are not alone; I remain unable to grasp it. The nurse suggested that May probably could not maintain that for too long… but she hung on all day Monday, and then Tuesday. She finally left me just before 1:00 a.m. Wednesday, while I slept on the sofa in her room.
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I have few regrets. I was a good (usually) and faithful (always) husband. I loved her desperately “for better”, and I was always there “for worse”. That Sunday in December, when the pain started, she lay on the bed trying to find a position that was reasonably comfortable. I lay next to her, knowing that our time together was suddenly, alarmingly, limited, and I told her all the things that I would wish I had if I didn’t (or if I waited until her mind was no longer clear). May demonstrated a bravery in the face of death that still astonishes—and eludes—me. If she was afraid, I never saw it. What she did fear—openly—was pain and suffering. For those 2 months, I did all I could to keep her comfortable. However, I wish—with all my heart—that we had moved to Pohai Malama at least two weeks sooner than we did. Yes, I was capable of caring for her, but she needed the professional care, facilities, and specialized drugs that only Hawai'i Care Choices can offer. The people and the facility are magnificent. Do yourself and your loved one this great kindness: talk to Hawai'i Care Choices as soon as possible.