Muddling Through Leukemia | A psychologist's experience of cancer and life
Through this blog, psychologist share experiences, both as a patient and as a psychologist, of living with chronic illness. Psychologist CML(Chronic myelogenous leukemia) diagnosis followed a long history of other health challenges
Annie had been after me to write a guest post for years and I had always declined. She said we were “muddling through leukaemia” together. Which is true. But this blog was HERS. People wanted to hear from her; to get her wisdom; to be comforted by her words and insight; to be challenged about how they viewed the world. She taught us all so much about strength and courage, compassion and diversity, right and wrong, living and dying. She made us laugh and cry, sometimes in the same sentence.
Annie died in hospice yesterday morning. She wasn’t in pain and was comfortable right to the end. Despite her earlier misgivings about being in hospice, this time she knew it was where she needed to be. The amazing staff made her feel safe and eased her mind, which is the most precious gift, both of us could have received.
Over the past few weeks we had daily chats about her life and what her legacy would be. Her wondering wasn’t because of narcism. Rather it was because she wanted to know that she made a difference. That she helped people. It wasn’t about feeding her own ego. It was about her overwhelming desire to take care of people. She actually apologised last week for “abandoning her followers”. Yes, those were her words. A true caretaker of hearts and souls until the end.
In keeping with Annie’s strict rule of 500 words or less, I offer this as her legacy. She will be remembered for her kindness, warmth, and generosity, both of time and money. She had an amazing ability to make people feel important and that she was truly listening to them. Annie showed us how to touch people’s lives and to make the most of every day. She reminded us that life is short and precious. She exemplified the tenet “it’s better to give, than take”.
She had a brilliant mind and made people laugh, often and hard. She taught us to be honest but never mean or cruel. She was reliable and always put others before herself. She was a good friend. And a great baker. She set the bar on what it means to be a good person. She inspired us to be brave, strong, and kind.
Gone but never forgotten, I hope you will continue to be inspired by Anne’s legacy. I know she inspired me every day to be a better person. I hope you got as much from Annie’s blog as she did. Now that would make her smile.
Thank you for all your love and support these past 4 years.
Annie in a library (where else would she be?) in Vienna.
Good news! I’ve learned how to use voice activated dictation.
I’ve been struggling with my fine motor skills, including my typing. This has made it difficult for me to communicate with you, my dear readers. Were my hands steadier, I would have posted to my blog sooner. I feel like my thoughts are trapped in my head and I am unable to share them to you. Being unable to text on my cell phone, something I didn’t think twice about doing previously, is tough too. Just yesterday I learned how to use voice dictation on my cellphone. I am clumsy but I will get it.
Because we have been questioning whether I need to be in the hospice–I am less sick than I was when I entered the hospice–I am still alive, although it has been a difficult week. I am less steady on my feet and do a lot of sitting around. And sleeping, often through the mornings. I am frustrated by my poor balance. Needing Judy to support me as I walk is a bummer. I am often more alert in the afternoons but my days are shrinking.
The hospice has granted me day passes so I can spend time at home, where I am more comfortable. Also, I have a pass for this long weekend. With this pass, J. and I will be able to determine whether I need to be at hospice or whether, with her support, I might be able to function at home. It would certainly be less exhausting travelling between hospice and home every day.
Here’s my bigger dilemma: do I stay at the hospice, where the medical resources are immediately available if am in medical distress, or do I take the risk of going home, knowing I may not be able to access those supports when I need them? Also do I stay at a place where I am comfortable knowing I am waiting to die, when I would rather be at home with my family?
By the end of this long weekend, we will make this decision. I am not in denial about my impending death and neither is Judy. I arrived at the hospice sicker than I am today, but it seems it is not. So I have the weekend to decide where I need to be, and am lucky that the hospice will hold my bed. If I need to return to the hospice, even over the weekend, that’s what I’ll do.
If we decide we don’t need hospice yet, I will reengage with the palliative home care team and they will support me in the home as needed. Maybe that will mean home viisits or telephone calls with the nurse. Either way I will have supports available to me.
It is strange to check into a facility assuming I would never check out, except perhaps by checking out. But we may decide my dying at home is a better option. So I’ll have the weekend to decide where it would be best for me to die (assuming I don’t die over the weekend). I think some time will help us to sort this out.
I’ve been a little quiet lately, or at least quieter than normal. That’s because I’ve spent the week wondering whether I was dying.
I am writing you from one of our local hospices, where I was moved on Wednesday, after three days of sleeping day and night. I spent three days sleeping on the couch, then moved to bed and slept through the night. Three days of profound fatigue and a very sore throat.
Initially I thought it was the flu but J. called the palliative home care nurse, who suggested I’d enter the hospice. I put my name in for a bed here and by that evening, we knew that a spot would be available the next morning. So after three days of sleeping day and night, on the morning of day 4, an ambulance transported me to my new home.
I will be honest with you: moving to a place I will be in until I die has been tough. It may be the right decision but it has been scary and overwhelming to move in. I don’t know how I’ve not died from the emotional upheaval of moving to a place like this, even though the care has been exemplary. J., bless her soul, has been sleeping on a cot by my side. She has been fed generously at mealtimes, the same meals as the residents, and is welcome to be here as much as she wants. And this place starts the day out with the best iced water around, and there’s nothing I like as much as a good cold glassa iced water. These folks know what dying people need; I couldn’t be in better hands.
After a few days of lazing around in my new bed, I’m questioning whether my admission was premature. I believe I am dying, and that it will happen sooner rather than later, but my death does not seem to be as imminent as it was when I was admitted. My mornings are fatigue and naps, but by noon I’m alert and even up to a visitor or two.
Late this afternoon, we spoke with the doctor. She heard my concerns and suggested the best of both worlds, for now at least: a day pass to see how I’d function in the community. If she takes me home, J. will be responsible for caring for me, but she seems up to the task. I am not incontinent, I do not need help with self care, and, although I am weak, I can make it to the washroom and fridge on my own. J. will need to feed me and do my laundry, but she’s been doing that for some time already. If my condition declines, I’ll return to the hospice pronto.
Blogging is low priority now. J. has access to my blog, and you will know if I die. But know that the end is near and, day passes or not, I imagine I will die in this spacious room with large windows and caring staff and great food. (If only our hospitals fed us so well! Two meals with bacon so far.)
I will be writing as long as I can. If I do not respond to your comments, I trust you will understand. I am grateful for your persistence and support. You have motivated me to write.
Tonight Jews the world over will be eating matzah, bitter herbs, and greens dipped in salt water and retelling the story of the Jews’ exodus from Egypt. How did that Red Sea magically part? And how is it that in 54 years, I’ve never noticed the hiding the afikomen, that special piece of matzah, for the kids to find?
While we Jews celebrate our freedom, Christians will be celebrating the miracle of the abundance of chocolate eggs. (That is what Easter is all about, isn’t it? The annual chocolate egg hunt?) The kids will be wondering whether the Easter bunny stole the eggs from an unknowing chicken (rabbits lay bunnies, not eggs), how they too were hidden without anybody noticing, and, this year in Calgary, whether they’ll be able to locate them underneath several inches of fresh snow. Dress well for the hunt, wee ones, it’s cold out there.
I will admit I am somewhat distracted from the holiday festivities this year. Rather than focussing on the miracles of the season, I am focussed on the miracle that I am alive and feeling fairly well. I have a roof over my head, food in my fridge, a loving partner, a dog who adores me when I feed her, and friends surrounding me. I couldn’t ask for more.
But I am also a realist. I don’t believe a miracle will alter what happens to me over the next year. No magic potions, no oddball interventions, no flying down to Mexico for the unvalidated treatment that preys on those who are betting on life. I also don’t believe a doctor will discover a cure for my condition just in time for me. If that were going to happen, it would have already.
I have not consulted a naturopath or a witch doctor or an airy fairy shamanic healer. I don’t think chiropractic care or reiki can halt the progress of my illness in its tracks. Others may pursue those alternative interventions, and more power to them for so doing. I’m solidly a Western medicine girl. My Western-trained doctors have kept me alive this long, and I’m going to trust them to do whatever they can for as long as they can to keep me well.
Please don’t be offended if I politely decline the miracle intervention you suggest. You want me to try those magic mushrooms (not the psychedelic kind) that saved that guy with advanced cancer? They sound amazing, but I’ll pass. I don’t believe they’d help me.
Don’t cry for me, Argentina. I’m oddly at peace with what’s going to happen to me. Knowing I have no control over my impending death is freeing, and easier than hoping for a miracle cure. In the meantime, I plan to treat my body with respect, barring the list of unhealthy foods I plan to eat before I die (Big Mac anyone?), to move my body as much as I can, and to spend time doing things I enjoy with people I love. My goal is more happy than sad days. If I can keep Saddy on side, I’ll be fine.
Happy Holidays! May you all have many personal miracles to celebrate.