Should I stay or should I go?

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 with 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 activated dictation. 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 was admitted there–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. My poor balance frustrates me. Judy needs support me as I walk. 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 resources are immediately available if am in medical distress, or do I take the risk of moving back 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. 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 palliative home-care 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). Some time will help us to sort this out.

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Brace yourselves for a bad news post

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 keep going.

From this day forward, reader beware

I realize that my last post was heavy and depressing. I am grateful to anyone who read it, and for the resulting outpouring of compassion and support. Even as I was writing you, I wondered whether it was fair to dump these tough challenges I’m facing on you. Who would want to know I’m suffering from escalating, excruciating pain? What a downer.

When I first started my blog, my health was precarious but my death was not imminent, so my writing reflected that dichotomy. There were lighter posts to balance the heavier ones, and I worked hard not to overwhelm you, my readers, with depressing topics day after day. But times have changed and I am staring death in the face. Is it fair to expose you to this nitty gritty, or should I keep all that to myself?

You know my answer: I wouldn’t lie to you. You’ve been with me for the long haul and I’m not going to sugar coat my day-to-day experience now that I’m declining. Consider me too honest. I am writing about the reality of death and dying, which rarely involves puppy dogs and rainbows, or rainbowed puppy dogs for that matter.

I can attest from personal experience that dying is not fun. It’s scary and overwhelming and, although there are ways to alleviate my progressively debilitating symptoms, those interventions won’t stop the course of my illness. They won’t change my end date. In the meantime, no more suffering for this gal.

When I was at the cancer centre yesterday for a red-blood-cell transfusion, Dr. Blood Lite dropped by to discuss my pain. He told me pain was unacceptable, and prescribed morphine, which he felt was a better option than codeine. The doctor knows best, so off to the pharmacy I traipsed with my triplicate prescription.

Morphine is used widely in the management of cancer-related pain. Today I picked up my prescription from the pharmacist–I made this lovely young woman cry when I told her I was palliative–and I will start taking this drug tonight because I need to. I am hoping to knock my pain out of the park.

The doctor said I will not notice much difference in my functioning on this dosage of morphine as compared with the amount of codeine I’ve been taking. No walking around like a zombie or drooling out of the side of my mouth at this dosage at least, although I may experience the odd hallucination. I’m okay with that if the drug can reduce my pain. This should allow me to get back to living my life from somewhere other than the couch. I have so many items left on my baking to-do list….

So kids, you have a choice to make. You can ditch me now, and I will fully understand. If you stick with me, consider yourself duly warned that what I write may not be easy to read. But it will be honest, and I’ve always felt that honesty is the best policy. I think you’re strong enough to handle it. If it’s any consolation, I’ll be muddling through it with you since I don’t have a choice.

Desperately seeking eulogy, or maybe not

Remember how the rabbi tasked me with writing my own eulogy? He wasn’t expecting me to deliver it at my funeral–that would pose one obvious logistical problem–but thought my input could guide him. Some have suggested he was trying to get me to do his work for him but I disagree. He was simply exercising his due diligence. How better to get to know me than by soliciting my input on the eulogy?

I like this rabbi’s philosophy. He prefers to deliver the eulogy because, by so doing, he is allowing those attending the funeral to focus on mourning. If I didn’t like him or trust him so much, I might have trouble with his assuming this task, but I think he’s the perfect man for the job.

That being said, I’m sure many of you are dying to eulogize me. I’m sure you all have a funny story or ten that I’ve neglected to share in my blog, where I’ve been incredibly difficult or my outside voice has said something outrageously inappropriate. Everyone has an Annie story.

Also, I don’t want to be idealized after my death as so many are; I want you to retain a balanced picture of me for eternity. I’m sure your words would highlight many areas where the rabbi would appropriately fear to tread.

I was texting with a dear longtime friend the other day who kindly reminded me of an incident soon after we’d met. I had invited a few friends to my home for a social evening. (Once upon a time, I socialized.) I recall hours of raucous frivolity. I laughed so hard that, late in the evening, I ended up wetting my pants.

Remember I recently disclosed that I bleed a little when I cry? Well, it turns out, on very rare occasions, I also pee a little when I laugh. My dear friend has never let me forget this incident, and with good reason. He is the elephant who never forgets.

As we were texting about this special memory, I mistyped, “I understand your vivid recollection of the pee incident. That’s why I’m now asking you to do my eulogy.” But I meant to write “not” instead of “now”. My friend received this text while he was in a work meeting, which elicited tears and a barrage of texts about how we’d have to meet to discuss what he’d say, and whether he’d even be able to speak without weeping.

After several perplexing exchanges–I didn’t ask the elephant to do my eulogy, did I?–I reviewed my texts and realized my grave error. My correction was swift and firm. No, dear friend, you willl never be tasked with my eulogy because your impulse control is poorer than mine (if that is indeed possible)! Plus, I’ve herein already shared your favourite memory, the pee story.

For the rest of you lining up to speak on my behalf, thank you for your interest but the position has been filled. No hard feelings. I’d prefer we stick with someone who does not know me well enough to humiliate me completely in front of a crowd. As you well know, I am perfectly competent of doing that myself.

The mystery of the angels in my midst

When I think of angels, I often think of the heavenly ones with gauzy wings and glowing halos. Kind of like Tinkerbell. Recently, however, I have come to realize that there are many angels here on earth. Don’t worry, I’m not getting all religious on you; I’m making an observation based on personal experience.

Angels have been jumping out of the woodwork recently. There are the long lost friends who have heard I am dying and are reaching out with loving letters of comfort and support.They have shared happy memories of our time together and reminded me of what our relationship has meant to them. Others who live closer by are sharing similar sentiments with me face to face. It’s uplifting to learn I am loved before I die.

I can’t imagine it is easy to communicate these feelings, whether in person or in writing, but these friends are pushing through the discomfort to share frankly and honestly. Knowing that I have had a positive impact on their lives, or that I have brought them joy, or provided support when they’ve needed it–these acknowledgements make me feel my life has had value.

Then there are the doers. The deliverers of lasagna and grapefruit and other various and sundry delicacies, the visitors who drop in at the cancer centre on short notice to pass the time of a transfusion, and the dog lovers who ensure Jelly is cared for if we are waylaid or slip out of town for the day. Their importance cannot be understated.

But there is one particular angel, hereafter named Supercousin, who takes the chocolate cake this week. Supercousin has arranged a Canadian Blood Services clinic in my honour in Toronto on Saturday, June 16. She has initiated this clinic  because she, like many others, feels helpless from afar and wants to do something tangible to show that she cares. She has announced the clinic to close friends and family, and the response has been swift and magnificent. Already 20 donors have stepped up, plus several others who unfortunately are ineligible to donate at this time. Through this venture, Supercousin is raising awareness of the critical need for blood donations. I know I am using more than my fair share of blood products of late, so any efforts to replenish the stocks I deplete can only help others.

If you happen to live in Toronto and would like to donate at this clinic, let me know and I will connect you with my awe-inspiring Supercousin. (To reach me, you can comment on the blog, text, or email me.) If you do not live in Toronto, but would still like to donate, let me know. Maybe a group of us can crash the Calgary clinic (or wherever else you live) while the scheduled Toronto clinic is underway. We may not be able to add to the official Toronto-clinic tally, but I have a feeling the overflow of blood products will find good homes.

I’d love to be in Toronto June 16 to cheer these generous donors on, but my horoscope stresses that travel is out. You can be sure I’ll be there in spirit, however, or Skype, or maybe even FaceTime, assuming a young person can show me how.

Death by trifle

Thanks to all of you who have provided suggestions for my failed eulogy. You have all been much too kind. Perhaps someone would like to assume this task for me altogether? I am finding myself uncharacteristically paralyzed by my impending deadline.

Plus, I’ve been too busy with death preparations to eulogize. Last week, J. and I met with the palliative home care nurse, for one.  She arrived at our home just as a challah was coming out of the oven and, between her sighs over buttered bites of warm bread, we chatted about the heaviest of topics.

Nurse End-of-Life was lovely, personable, and straight forward. She provided a wealth of information about supports within the health care system for people just like me, and she answered many of the questions a dying person might have. We discussed how and where I might die, and how palliative care can help as I near death. I have always stressed that J. must not assume my nursing care once I am unable to care for myself.

There’s the question of dying at home vs. in a hospice. I don’t know where I’d like to be; I don’t think I’ll know until the end is nearer. I hope I will be well enough to make that decision with J. at that time.

Although we may visit hospices to get familiar with them, neither of us feel a need. Jelly and I had regular PALS visits at a hospice, which provided enough exposure for me. Through my volunteering, I had ample opportunity to witness the peaceful, warm environment for patients and families. Although this hospice is a lovely place with kind, attentive staff, I personally would not choose to die there because each Wednesday afternoon they hold a tea where they served trifle. I hate trifle. If a hospice is in my future, I’m hoping for one with tastier tea time offerings. Also, and perhaps more importantly, I would feel self-conscious dying in a place where residents and staff knew me previously as a volunteer.

We also discussed how people with hematological illnesses die. I’ve managed to avoid seeking this information, although deep down I know. According to Nurse End-of-Life, hematology patients don’t spend much time in palliative care because their deaths are often quick and unexpected.

J. and I had very different reactions to this meeting. J. was eager for the knowledge, and felt many of her questions were answered. I, on the other hand, was completely overwhelmed by the frankness of the discussion. Not surprisingly, my mood took a nosedive, and it hasn’t yet recovered.

Thus far, I’ve avoided asking the hardest of questions. I want to gather information as I need it, but not before. I’m torn between wanting to know the truth and wanting to avoid it for as long as I can. This meeting forced me to consider what might happen to me and my mind has had trouble thinking of anything but death since.

Time to research the teatime offerings at other hospices. That would help to distract me from my death, and I may be pleasantly surprised that not every hospice serves trifle. Thinking about better baked goods is bound to cheer me up. I’m sure of it.

Some assignments are hard to study for

This weekend, at one of my last PALS visits with Jelly–it is time for us to play bow out–a woman I’d visited previously asked if I was taking leave because I was pregnant. From the cradle straight to the grave. I didn’t have the heart to tell her that, in fact, she had mistaken my spleen for a fetus. Please folks, don’t assume you know what’s going on under that tight shirt. Save yourself the embarrassment of being wrong.

I’m telling you this story only to avoid discussing what’s really on my mind. I’ve recently been given the hardest homework assignment of my life death. I envision a big F on my horizon. I’m procrastinating despite my quickly approaching deadline (and I don’t mean “due date” here).

When J. and I met with the rabbi, he suggested I write my own eulogy. Very clever, I thought. This way, he could get to know me and to find out how I’d want him to characterize me. The task seemed so creative and insightful at the time. And I love to write; I was excited to try.

I’m not doing very well. I’ve drafted and redrafted my sendoff to no avail. What I’ve written so far would put you to sleep. What would I want to capture in my eulogy anyway? I could list accomplishments, few that they are, and bore you to tears. I don’t want to be remembered for what I’ve done in my life but for the kind of person I am (I was? But I’m not dead yet!).

If you asked me to write your eulogy, assuming we are close, I’d enjoy trying to capture you to share with others. But characterizing myself? That’s a lot harder.

You know I love to write. Writing my blog has never been a challenge. Absurd ideas come to me and within an hour or two, I’ve dumped them on you. Some posts are better than others because I can’t be at the top of my game every day. No one can. I do the best I can on that day, knowing that on another day, I might be able to do better (or I might do much worse).

But back to the eulogy, which I’ve been writing for 4 years already. I’ve titled it Muddling Through Leukemia, but I’d consider the blog my evolving perspective on life and death. If you want to know who I am, who I’ve aspired to be, and where I’ve failed–oh, how I love to emphasize my failures–read my blog.

I can’t ask the rabbi to read four years of posts to get a flavour of who I am, though; that would be unreasonable. So I will try to draft something for him, if I can find the emotional energy to do so in the midst of all I am dealing with at this time. And if I fail miserably, I trust the rabbi will be able to fill in the blanks. He strikes me as extremely capable, and I imagine he has more experience with eulogies than I do. And he is compassionate, so maybe he’ll cut me a little slack. If I’m lucky, I’ll end up with a D, since I don’t have time to repeat the course.

Choosing your words, and your verb tenses, carefully

As I move into my palliative reality, I’ve had several discussions with others on whether a sudden death is preferable to one that is expected. What are your thoughts?

Although my timeline may have changed recently, forcing me into fast forward, J. and I have had (the gift of?) time to plan for my impending death. We have been systematically sorting out some of the logistics of my departure. Why, just yesterday, I sold J. my car for one dollar, since I doubt I’ll need a vehicle up there. Then I promptly spent my unexpected windfall on wine gums.

When someone dies unexpectedly, loved ones may not have a chance to tell the person how they felt. There may be unresolved issues amongst the survivors, complicating their grief. Imagine a teenager who commits suicide after a fight with a parent, or an estranged brother who learns his sister has died suddenly, preempting any chance at reconciliation.

Well, there need be none of those unresolved issues with me, folks. Throughout my life, I have tried to make amends with others I’ve felt I have wronged. I’ve always tried to be honest with people, perhaps to a fault, but I’ve never intended to be mean. If I have crossed into meanness with you, and not addressed my behaviour at the time, I am truly sorry.

I have also tried to let those I am close to know how deeply I value them through my actions and my words. If I don’t get to all of you before I die, I’ll trust you have sensed my love and gratitude for our relationship. I have been truly blessed with a richness of friendship and love.

If you haven’t yet, take some time to tell your loved one what the relationship has meant to you. Forgive me for wanting to guide you through this process but I have had some experience with this lately.

If your beloved is dying, consider addressing only the good, and leaving out the bad and the ugly. If that person said or did anything to hurt you many years ago, don’t raise it now. You’ve had ages to address that wrong and chosen not to. I can attest that dying people are frankly not up to the confrontation; they’ve got other things, like hospices and graveyards, on their minds. I realize this may seem unfair, but I’d urge you to stick with the positives in those final exchanges.

When you choose your honest words with me, maybe you too could consider whether they will be hurtful. Now’s the perfect time to consider biting your tongue until it bleeds. Feel free to discuss your longstanding grudge against me with someone else, however. Perhaps therapy might help you resolve your ongoing resentment. Let me provide the name of an excellent psychologist while I still can.

Finally, if you want to tell me what I’ve meant to you, consider your verb tenses wisely. I’d prefer your addressing me in the present tense since I’m not dead yet. If you tell me that you loved me, I’ll wonder when you stopped, for example. Once I’ve died, past tense is fair game if my name arises. For now, I’m still here, and I can still hear you. Thanks.

What [inappropriate thing] would Annie have said?

Not long ago, my fourth blogaversary and 600th post passed without fanfare. I can’t believe I missed an opportunity to laud my accomplishments; I must have been distracted by other matters. I’ve told you all many times how grateful I am for your keeping in touch through my blog. Your reading has spared me recounting difficult news, especially of late, to each of you individually. I plan to keep you in the loop of my life by writing for as long as I can.

Lately I’ve been thinking about how my life is going to end soon, and how the story I’ve been telling over these four years will end with it. In my blog, I will continue to share my difficulty accepting my prognosis, the end-of-life decisions I have made, and other honest details of my decline. I imagine you may regret my oversharing, but you’ve kindly hung in there with me.

It saddens me that you will know the end of my story, but I won’t know the end of yours. I want to be there to see how your life turns out, but I won’t be. I think of all my beloved nieces and nephews who are nearing or already settling into adulthood, and I will miss watching their lives flourish. If they get married or have children or grow in other ways, I will not be there as witness. I’d like to think I’ll be cheering from above, but will they be able to hear me?

And if any of you experience hardship, I won’t be there to offer comfort, as you have done for me and J. so magnificently through my illness. I won’t be able to lend an attentive ear or drop off a lasagna or just be there, to do what good friends do. I’ll be leaving you high and dry.

When I was helping a client through grief, I’d often try to bring the person they’d lost into the room with us. No Ouija boards or empty chairs; we’d simply talk about the person. I might ask, “What would your (now-deceased) loved one say about your current breakup/job struggle/pregnancy?” Some clients thought I was crazy, but others took comfort in imagining how their beloved might have supported them through their struggle. Conjuring up that person’s voice when they were stuck helped them move forward.

And so I wonder, could I be that voice of love and support in your ear after I’m gone? If you are feeling low or alone or upset, could you imagine how I might comfort you? You know I’d want to be there, and I’d be overjoyed knowing I might help you muddle through, even after I am gone.

I realize that trying to enlist my help after I’ve died may backfire altogether. There’s the risk you may conjure up Loose-Lips Annie, who has blurted out countless inappropriate statements over her lifetime that she wishes she could retract. Hopefully not, though. I’ll try my hardest to contain my overly blunt persona, even from the great beyond. That is, unless I think you could really use a swift kick in the pants. Then all bets are off.

I was hoping to skip the anger stage altogether

I’ve written before about the many stages of grief. I’m a pro at denial, and encourage you to rely on it liberally when death is staring you in the face. I’ve acknowledged sadness, albeit reluctantly. Bargaining is my favourite. “If I don’t eat any more Big Macs, may I live an extra month?” I’ve even had moments of acceptance, and the calm that they bring, but they are fleeting.

I haven’t forgotten anger, but I’d planned to skip it altogether. Being angry seems such a waste of my limited time. It’s not a place I want to linger. I’ve had angry moments, but I’ve moved through them and tucked them away.

Then I received the good-bye letter from our professional college, of which I’ve been a member in good standing for 24 years. A few months back, I had informed the college that I would not be renewing my membership when it came due at the end of March. I had a brief exchange with an administrator who confirmed that she would ensure my request was forwarded. The process was actually easy, if heart wrenching.

The letter I received this week confirmed my withdrawal from the psychology register. It couldn’t have possibly been more impersonal. Since it’s not very long, I’ll reproduce it for you.

Dear Dr. Doe:

Re:    Removal from Psychologist Register by Request

(Hang on to your seats. It gets really personal from here.)

In accordance with Section 43(5) of the Health Profession Act, the College has accepted your request to remove your name from the register, thereby canceling your registration as a Psychologist in the province effective April 1, 2018.

We wish you all the best in your future endeavors.

Sincerely,

Dr. Registrar

For some reason, this letter made me screaming mad. I’ve been composing my bitter response all week. Please allow me to share it with you.

Dear Dr. Registrar:

Let’s ignore the fact that the Act you are referring to regulates many professions, and is in fact called the Health Professions Act. I thought you might have known this, but, oh well. Thanks for the bold-faced Psychologist, in case I’d forgotten my professional designation. I may be dying, but thus far I’m cognitively intact.

I’m wondering, though, are there people whose requests to leave the register you do not accept? And under what conditions are such requests denied? Considering this, I’m so grateful you’re letting me go to greener pastures, literally.

Your closing sentiment wishing me all the best at my future endeavors was the cream cheese icing on the carrot cake. I imagine your administrator did not inform you that I am ending my registration due to ill health. As such, my future endeavors involve trying to stay alive. I hope to be the best dying person I can be, but I don’t necessarily consider this an “endeavor”. You may want to consider that not all former registrants go on to bigger and better things.

Sincerely,

Dr. Annie Doe

I realize my anger is much more about dying than the form letter I received, and that’s why I’d never forward my response. But let me blame Dr. Registrar for a few more days, okay? I’m sure my denial will kick back in soon.