On May 7 of this year I was diagnosed with Acute Myeloid Leukemia, cancer of the blood. Most of my new bone marrow cells, called blasts, will not mature into healthy blood cells. At diagnosis, 20% of my blood cells were blasts, or cancer cells. Those blasts reproduce too quickly, never mature and starve out healthy blood cells. I have almost no white blood cells, which provide immune response, and decreasing red blood cells, which carry oxygen from my lungs to all other body tissues.
The St. Luke’s and Siteman doctors said without chemo I could die of an infection in three days, or three months. AML is an aggressive disease with a 5% survival rate if untreated. I don’t look sick or sound sick, but because my blood is delivering less oxygen to my body each day, I’m tired all the time and often short of breath. It’s getting worse, I sleep about a third to a half of most days, but I still don’t feel sick.
My doctors said successful participation in a stem cell trial would give me a 50% chance of surviving for 5 yrs. I’d always wanted to use hospice if I developed a terminal disease, but because ALM can be a swift killer, at first I considered the stem cell trial, knowing the research would help other cancer patients.
I thought it over very carefully, read Siteman’s glossy booklet on stem cell transplants and got my hair cut in preparation for the ravages of chemotherapy. Then spent a week talking to close friends, family members – including several doctors, my doctors, my therapist and the Ethical Society leader, Kate Lovelady. I decided I did not want to live with the permanent and irreversible side effects chemotherapy would cause. I also knew chemo would make me very sick, and even more susceptible to infections for the rest of my life. But even with leukemia, I want the best quality of life I can have. I refused chemotherapy and signed up with hospice May 29.
It’s been 3½ month and I still don’t feel sick. I feel like staying in bed every morning when I wake up. It’s getting worse, but I still can do a few things each day.
My hospice admitting nurse said cancer is an automatic referral to hospice; there is no six month limit for people with cancer. I am eligible for hospice care for the rest of my life, no matter how long that is.
Hospice is a Medicare/Medicaid benefit, paid for by the good taxpayers of America. Whatever home health care I receive my husband and I pay for.
I can leave hospice at any time if decide I want chemotherapy.
I have both a CALL HOSPICE – DO NOT CALL 911 request from hospice and a DO NOT RESUCITATE order taped to our phone cabinet.
When I’m gone, my hospice team will continue to offer support to my husband and other family members and care-givers during their bereavement.
I chose Hospice because I want professional support for the best quality of life possible for the time I have left. I want the emotional support and kind human companionship hospice provides as I live with leukemia, and when I am actively dying, for myself and my husband. I want access to the medicines of comfort /palliative care at any time I need them for the rest of my life.
My Hospice support team includes Beth, my hospice nurse, who comes Monday and Thursday and will for the rest of my life. I love Beth. She asks me how I’m doing, takes my blood pressure, pulse, temp, listens to my lungs, listens to my worries, lets me cry, or be angry because my husband would rather change the anode in the water heater, just for me, than talk about serious things. Beth is a savvy, shrewd professional, the warm, comforting presence I anticipated from hospice. My social worker and the hospice chaplain come once a month, for me and for my husband. They will come more often if either of us feel we need them.
When I’m actively dying, Beth said she’ll be there every day, as will my home health aids, with Beth to advise them, and the social worker. The chaplain will come also if I wish. Before that happens I may be too weak to get out of bed, may need bathing and toileting help. I don’t want to be dependent for that kind of personal care, but in the past three months my hospice team has taught me I can trust them. I know they will help me when I need them. They do now.
My family is not comfortable engaging in conversations about hospice or dying or the meaning of life. Because I don’t look sick or sound sick, it’s relatively easy for them to avoid those conversations. My husband’s theme since my diagnosis is, “I don’t want to talk about it.” On the phone I hear, “Hi Mom, How are you? Good, Love you, Bye.”
When I offered my daughter a copy of the poem I’d like her to read at my memorial service, hoping to use that as a lead into a conversation about how much I love her, what she means to me . . . she stood up, waved the paper away and said “Oh, Mom, we’ll do whatever you want for the memorial.” But she doesn’t know what I want. I won’t be there, and she and her brothers and her dad won’t talk about it. I know they love me, but their distance is painful.
It’s sad, also funny. Why should anything my husband or kids do, the people I love the most and know best, surprise me? Your end of life challenges will be different from mine but we all have them. Dying, like birth, requires a lot of help. I didn’t anticipate my family’s response, so I am grateful every day that my hospice caregivers fully share this journey with me.
I can’t say this to my family, so I’ll say it to you. Should you or a loved one for whom you are a caregiver be given a terminal diagnosis, please consider hospice from the beginning. Don’t wait till the last few weeks or days of life. I know how to take care of myself; even before leukemia, I made sure every day was rich and full of ordinary satisfactions. I had a good life; Ethical Society is one important part of it. I’ve made many wonderful friends here, friends who believe in supporting each other through all the stages of life. I don’t participate much in the Society now, but I can share my hospice experience with you, and this message.
I still have a good life. But no matter how brave or independent or resilient I am, and I am a strong person, my body is failing me, and end of life can be a difficult, sad journey. My wish for you, if you choose it, is to have what I have been given by hospice since May 29: sensible, loving companionship from my hospice team, the warmth of caring human presence from professionals I’ve learned to trust, emotional support and encouragement to live fully each day, professional care and medicines, including pain relief interventions if and when I want them. Hospice is about supporting me in my choices, and it will support you as a caregiver or as a dying person to achieve the best quality of life possible for the life you have. Thank you