Day 1 of hospice care. No symptoms.
We met with a nurse from Denver Hospice today. This should have happened earlier, but somehow the referral from my oncologist's office had been faxed to the wrong number. Faxes in 2017? The 1980s called. They want their technology back. Anyway, once the referral went through, Hospice called almost immediately. This is a very good sign, but it makes me glad there was this delay. I would not have been ready to meet a new team a week ago. I was still mourning the loss of my oncology team. Prematurely, as it turns out.
I was surprised that they could schedule us so soon. When the call came yesterday afternoon, they were able to send someone this morning. We were told to expect calls from members of my new team over the next few days. All of this shows why my oncologist referred me to them. They respond very quickly.
The lady who came to our house today was named Paula. She was the admitting nurse, and said we wouldn't see her again after today. Her only purpose with us was to admit us for hospice care, and explain the services that are available to us. She gave me the book pictured above.
I haven't read through the book yet, but Paula directed me to the page that talks about what to expect in the first two days. An appointment will be made with my new hospice nurse, and a "comfort kit" will be delivered, containing medications often needed by dying patients. Including morphine. I hope I never need it, but I probably will at some point. It will be very strange receiving that package tomorrow, when I expect to still feel fine.
Given my experience with medical offices, I'm surprised that things are moving this quickly. Paula said that my oncologist refers many patients to them, and I'm starting to understand why.
Paula said Denver Hospice is known for their ability to manage pain. I explained that my priority is remaining lucid so I can write, drive, and interact with people. She assured me that this is possible. They do it all the time. She told me they have over six hundred patients in Denver right now, and all but a few are at home. That's exactly what I wanted to hear. But she also said something I wanted to hear even more.
She called my oncologist's office to ask if he could be my doctor in hospice care. He agreed, which means I can keep going to his office and see my team as more than a visitor. This makes me happier than I can describe. There has been a throbbing ball of sadness in my heart since the day I said goodbye to them. I was fine for the last few days, as long as I didn't think about it. Then Prostate Cancer Foundation reprinted my blog post about them, The Hardest Part, and it brought it all back. But now that I know I can go back at least a few more times as a patient, that ball of sadness is gone. I feel much better about things now, knowing I don't have to make such a clean break with them.
Paula had me sign several forms, including one that's very important to me. A Do Not Resuscitate form. If I die, let me die. Don't crush my ribs in a vain effort to bring me back. No CPR. Quality of life over quantity.
I know this is hard for you to read. It was hard for me to write. There is a sudden finality to things now that this step has been taken. But all it does is motivate me to keep doing what I can while I can. I still feel fine, and as long as that's true, I'll keep going. I'll probably keep going when it isn't true too. Cancer will stop me one day, but not today.
But make no mistake, a page has turned. The time for treating the cancer is over, and the time for keeping the patient comfortable has come. Please honor my request to stop suggesting treatments. Anyone who does will only show that they didn't read this, or they don't care how I feel, or both.
A friend said to me that no one tells us how to die well. It's a subject that nobody wants to talk about. Well, I'm gonna talk about it. We all must die, and I hope to die well, and by documenting the process, show others how to do so.
I'll post again when I know more, which should be soon. I expected this initial visit from Hospice to go well, and it went better than expected. I'm excited to meet my new team, especially since I don't have to give my old one up so soon. And I'm looking forward to having lots to write about.
Time is of the essence more than ever before. I'm calling the family in. If we are close, I'm calling on you. Sharon and I need you. Your friend is now in Hospice care, and your presence is requested. Be there or be square.
I've never been afraid of dying. I've been able to see this coming for two years now. I regret running out of time, and I naturally want to minimize suffering, but I don't fear death. In fact, I don't fear anything. I am beyond fear. When Eternity is this close, there is no place for fear, only love and freedom. I am free because of love, and there is no fear in love. Perfect love casts out fear. (1 John 4:18)
And so it begins. The third and final phase of my cancer journey. The first phase I call diagnosis, the second Stage 4, the third is Hospice. Each phase has taught me much, and I expect to keep learning until the day when the ultimate aha moment comes. #waroncancer #bearingwitness