Returning to the shock stage, whether I want to or not

Signpost showing 5 stages of grief: denial anger bargaining depression acceptance

Last week, I failed to skip grief’s anger stage. Today, to reinforce our moving between the stages of grief in a nonlinear fashion, I reintroduce shock. You might want to sit down. I am.

Do you remember a few months back when I told you I had a year or so to live? (How could you forget, since I’ve reminded you regularly in subsequent posts.) I genuinely thought this news was the hardest I would ever receive, but I was wrong.

First, I should confess that I have not been well of late. I’ve been exhausted and weak (the couch has been craving, but not getting, alone time), and my appetite has been low. I’ve also developed a chronic low-grade fever and night sweats. I knew something had shifted; I just didn’t know what.

During yesterday’s visit with Dr. Blood Lite, I learned that my illness is progressing at a much faster pace than he anticipated. Despite recent transfusions, my blood counts are on a downward spiral. My bone marrow has apparently reached the point where it is no longer producing blood cells.

The short-term solution to this problem is weekly transfusions. Over the next while, I will be spending one day per week at the cancer centre receiving other people’s blood. If you haven’t yet donated blood but are eligible to do so, I really need you now. If you can’t donate, bully a friend into it, would you? Transfusions are truly a matter of life and death for me.

But–and there is always a “but”–transfusions will only sustain me for so long. At some point, my blood counts will drop so low despite those transfusions that there will no point continuing them. Once they end, I will die. I don’t know how long that will take, but it will happen.

Because I am a seeker of the truth, I questioned the timeline I’d initially been given. Dr. B.L. concurred that it was unlikely I would survive the year, and suggested that perhaps I would live until the summer. That’s not very long.

When I thought I had a year, I could get my head around dying. I figured by the time the year (and I) ended, I’d be ready. I wasn’t expecting this curveball. I will admit I’m not coping as well with my shortened life span. I have less time to prepare myself, and I have so much left to do.

There are some difficult matters to be addressed, now sooner rather than later. J. and I are talking about where and how I want to die and then, even harder, how I want to be put to rest (even I appreciate the odd euphemism). I have placed my end-of-life wishes on file at the hospital, and set up a meeting with the home-care team that will assist my transition to a hospice if I choose that route. J. and I are also meeting with the kind local rabbi who, despite my not being a temple member, will conduct my funeral.

Shock isn’t a bad thing; it buffers the worst blows, except at 3 a.m., when it is MIA, leaving panic it its wake. Why isn’t panic one of the stages? Maybe grief staging is due for a revamp….

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TMI Guidelines for the Dying Person

yoga class women cross legged eyes closed

Every Sunday morning for the past 10+ years, I have been going to yoga. I have to be out of town or deathly ill to miss a class. Over the years, a community has developed in this class, people who know each other if not by name then by face, who greet one another and struggle together.

This past Sunday, despite how important this class is to me, I almost bailed. I had a low-grade fever, I was physically exhausted, and I simply wasn’t up to it. But I went anyhow because I’m rigid. Every pose felt hard, and I had to modify occasionally to prevent bruising, but I muddled through. I can’t say I felt invigorated after the class–any physical activity is exhausting these days–but I was glad I went.

After class, one of the women who has been part of the Sunday community for years, who left to have a baby and recently returned, approached me as class ended to ask me how I was. It was an innocent question asked out of kindness. Although we’d chatted often over the years, I had never disclosed my health challenges to her.

Maybe because the class had been hard for me, maybe because I was feeling sick, maybe because my declining health is preoccupying me, I responded honestly. I said, “I’m palliative and it’s been a struggle lately.” What a way to kill the calming effects of that yoga class. She responded appropriately and kindly, if with shock. When someone asks, “How are you?” how often is “I’m dying” the answer? She said she would pray for me, and she meant it.

I could have just said, “I’m fine.” Was it fair for me to dump my reality on her? She doesn’t know me well, and she was not expecting that. But if I want support from people, even those I don’t know so well, I need to let them in. I didn’t belabour my point and, as is my nature, I quickly changed the topic to her baby, but I doubt that’s what she was thinking about.

Within minutes, another kind woman from class asked me how I was as I left the room. By this point, I was a little overwhelmed so I told her I was unwell but couldn’t talk about it. She accepted that, but we crossed paths again as we exited so I called to her. I apologized for mishandling her well-meaning question and told her that I was dying as well. She too was warm and supportive, but because she knew I’d had leukemia, she was less surprised.

What qualifies as too much information when you’re dying? I’ve decided that nothing does. I’m not going to start telling strangers about my impending death, but to tell people I know that I’m fine when I’m dying feels unsettling. Isolating.

I take comfort in knowing that there are two more people in Sunday’s class who know of my declining health. When I stop coming to class altogether, they’ll know why I’m absent. Who knows? Maybe they’ll even miss me. More likely, they’ll be glad my spot by the wall is finally vacant. I’ve been occupying prime real estate in that class for years.

All I wanted was a week off cancer :(

Basset hound outside on leash

After three consecutive Tuesdays spent hanging out at the cancer centre, I scored a reprieve this week. I was granted 5 whole weekdays to do with what I chose, except for Monday, when I’d take a jaunt to the lab for blood work. Otherwise, I had a brief respite to make plans, have a life, and forget I had terminal cancer. (A dying person never forgets.)

Then disaster struck. (I’m being a touch overdramatic here.) Early Tuesday morning, I got the dreaded call from the hematology clinic. The nurse’s opening question was, “Are you bleeding anywhere?” Sure, my gums were leaky despite my extra sensitive tooth brush–good decision not to see the dentist–and I’m covered head to toe in bruises. I know what this means, as should you, if you’ve been paying attention: my platelets are precariously low yet again.

I must admit I was surprised by this news. I had bet with J. that, if anything, only my hemoglobin had dropped. I’d been napping daily, and deeply, over the past week. I lost the bet. I’ve got the same number of red blood cells I had last week. I should be happy that my hemoglobin is holding steady, but I’d rather not hold steady where I’m at. Within this range, I feel anemic, but I’m not quite low enough to warrant a red-blood-cell transfusion. Consider me in hemoglobin purgatory.

The nurse suggested I come in immediately for a platelet transfusion. I boldly asked her if I’d die if it waited until the next day. You see, I’d had the gall to plan some activities–a dog walk, a Pilates class I love that conflicts with my cancer centre appointments, and coffee with a dear friend I’ve been missing. Sounds like a perfect day in the life of a dying person, doesn’t it?

After I hung up, I told J. I wanted one full week where I could pretend I didn’t have cancer. She doubts I’m going to have any more weeks like that, and she’s the optimist in our relationship! She’s probably right.

I fear my life may be all about cancer for the duration, with frequent visits to the cancer centre, last-minute transfusions, and other random medical interventions. I need to get my head around that, but I don’t really want to.

Still, I’m going to hold on to whatever normalcy I can despite the chaos of cancer. When I’m told to jump, rather than automatically asking, “How high?”, I may occasionally ask if there’s room for negotiation.

The nurse agreed to ask Dr. Blood Lite if I could safely delay my transfusion until the next day so I wouldn’t have to cancel my best laid plans. She actually sounded relieved that she’d have more time to organize my transfusion.

I had a lovely day yesterday, although I’m regretting the Pilates class. Attending a class like this is tough at the best of times, and this is not the best of times. Add on the dog walk, and the coffee and I wore myself out. Today I am recuperating from all that frivolity, and tomorrow I will receive platelets since there was no room today. I’ve even lived to tell the tale.

Regrets, I’ve had but one.

Open mouth with dental mirror inserted

A long time ago, I wrote a post about living life without regrets. No regrets was someone else’s idea, of course–I would never consider absolving myself of all the messes I had made of my life. How would I occupy my mind if I didn’t stew about my mistakes? The notion of living without regrets is quite freeing, though, and I’ll admit, I’ve tried to uphold it.

I think of my 18+ years of illness and see how much I’ve kept living through that time, as best I could. I ran a somewhat successful business, I made enough money to live comfortably and still have some left over, I made good friends, I found J. and with her parented a series of wayward dogs, I even baked croissants and danishes not so long ago, and I travelled near and far. These are all wonderful things. Sure, there have been periods when my illness has constrained what I could do, but for the most part, I’ve lived my life.

Yesterday a friend whose husband is dealing with life-threatening medical issues told me, “Each day is a gift.” I hate to be Anti Annie, but I challenged her on this. At this point, each day is not a gift, or if it is, some days it’s a gift I want to return to sender. Lately, some days are spent in bed, others accomplishing much less than I’d planned, and yet others hanging out at the cancer centre, often for hours. Sure, everyone at the cancer centre is lovely, but why would I want to be passing my precious time there?

I recently realized that, while I was busy living in the moment, especially over this past year, I’d completely forgotten to go to the dentist. That’s one full year without a cavity check or cleaning, and you know how seriously I take my oral health. Sure, I may not brush after every meal, except if greens were consumed, but I still floss daily without fail. Flossing also happens to minimize the bleeding from my gums that is symptomatic of low platelets.

And so here we are, almost 18 months since I last graced my dentist’s chair, and my teeth are in desperate need of dental care. So I asked Dr. Blood Lite one day whether I could see the dentist.

Dr. Blood Lite is a very kind man, a gentle man, a supportive man, who does not like to refuse me anything. He diligently explained what a dental cleaning would require for someone in my condition. First I’d need a platelet top up, which likely would fail to raise me to the level necessary to inhibit bleeding. Then I’d need to rinse before and after the procedure with an expensive prescription clotting rinse. Oh, and the hygienist would need to use tools fit for a toddler, and not fear a blood bath. That would be a no, don’t you think?

Let my one regret be my going to the grave with decaying teeth. I’ll keep up my diligent brushing and flossing for the duration because that’s all I can do. Will they let me through the pearly gates without pearly whites? At this point, I can only hope.

 

Restaurant review: The Golden Arches

Big mac laying on french fries

Last Tuesday, J. and I spent a long morning at the cancer centre. I’d received not-as-bad-as-it-could-have-been news from the doctor. My body is stabilizing somewhat, and my brick is less thick. After a quick infusion of platelets, I was sent off for two weeks. Since a celebration was in order, and we were both peckish, J. suggested the Golden Arches on the way home from the hospital. Off we went.

There is ample free parking outside the restaurant. If you are lazy enough to want your fast food without even leaving your car, there is also a drive-through window. Such conveniences for the lazy cannot be overstated.

It’s been 25 years or more since I’ve entered a Golden Arches. The decor was updated minimally from what I recall, and there was ample seating. Unfortunately, moulded plastic is not an especially comfortable seating choice, perhaps used to discourage patrons from lingering. We found ourselves a table for two. Surroundings were spic and span, especially considering the heavy traffic through the restaurant.

Unfortunately, we arrived 15 minutes before the grill was open for lunch. Although the Golden Arches now offers all-day breakfast, burgers are not available until 11 a.m. We returned to our uncomfortable seats to wait.

The menu has expanded considerably since I was last there, but I only had eyes for the Big Mac I have been coveting for months now. Also, I was worried that were I to sample an absurd variety of items, like a real restaurant reviewer, I might hasten my own death. Thus, J. and I agreed on splitting one Big Mac (my choice) and a large fries (her choice).

At the top of the hour, J. placed our order. Prices have certainly gone up since I was last here. Can you imagine nearly $10 for these two measly items? Our food was ready within minutes and J. brought our tray to our table. With it came considerable packaging waste, and the restaurant does not provide composting bins. Shame on you, Golden Arches!

I must note that portion sizes have decreased since I last visited. That Big Mac was anything but big. The basic recipe was unchanged, however: there were indeed two all-beef patties, special sauce, lettuce, cheese, pickles, and onions on a sesame bun. J. and I agreed that the chef had been overly generous with the special sauce, drowning out all the other elements. Overall, the burger was meh. The shoestring fries arrived steaming hot, and there were more than enough for two to share. We managed to scarf every single one down easily.

Overall, this experience was a huge disappointment. Although I had consumed a larger lunch than I normally would, and an excess of sodium and fat, I was hungry within an hour of eating. Perhaps I should have also ordered the chocolate shake I used to buy when I was younger and had a faster metabolism. Does this omission warrant another visit? Likely not. Once in 25 years is more than enough for me.

Reservations: Not required
Alcohol: Not licensed
Free Wi-Fi: Yes
Open: 24 hours daily
Ambience: A little too bright and cheery for me
Locations: On every major street corner
Good for: Rich people, including those with small children
Overall Rating: 2/5 stars

There’s no way to stop a ticking clock

Clock is ticking with sand timer

Remember when I used to joke about whether this was my last Hanukkah, or Passover, or Rosh Hashanah? I’ve stopped joking.

When Dr. Blood Lite told me I had one year to live, I forbid myself from becoming preoccupied with the clock ticking down my days. A few months have now passed since I received this news, and I’ve been trying to live in the moment rather than focusing on what’s down the road. I’m a realist, though, remember?

I realize no one knows exactly how long I will live. The doctor has given me his best estimate because that’s all he can do. Only time will tell. Maybe it won’t be 365 days, but 364 or 366, or 300 or 400. When I was first diagnosed with polycythemia, I thought I’d be dead within 10 years, and here I am 18 years later. My diagnosis with CML, although scary at the time, turned out to be a minor blip in the story of my health. I know I should be focussing on all the living I’ve done since I’ve been sick and all the living I have left to do, rather than the fact that my life may end sooner than I had hoped.

Then Passover came, followed closely by Easter. This year is supposed to be about creating memories, but last weekend all I could think about was whether I was celebrating these holidays for the last time. All my efforts at living in the moment failed miserably.

I gave myself permission to be sad, which I have to do sometimes. Sad that next year’s Seder would go on without me there to participate. Sad that I’d never again be able to hunt for Easter eggs like all the other preschoolers. I’ve heard of dying people celebrating Christmas early; I guess I could do the same for my favourite holidays as well, but I wouldn’t be fooled.

The thing about being told I have one year to live is that every milestone that passes in that year is potentially my last. Holidays, anniversaries, birthdays, even seasons–any of them could be my last. If my doctor’s prediction of my life span is accurate, I’ll probably live through my 55th birthday next October, but my 56th is unlikely. I should be around for our 6th anniversary this June, but likely not our 7th the following year.

Let’s return to the Seder. Although I was not the designated afikomen seeker–that’s assigned to the youngest person present–I bullied the rightful one into allowing me to conduct the search, figuring it would likely be my last chance to do so. Thankfully, others who were more observant than me guided me to the hidden stash using the red-light/green-light method. This method is effective with toddlers and spacey people like me. Even with this help, the young’un had to rescue me in the end, since, despite all her expert guidance, I still came up dry as a piece of matzah. It may have been my last chance to find the afikomen and I failed miserably.

I will try to create only happy memories in my final year, but some days, I’ll be mourning what’s potentially my last kick at whatever can I’m facing. I thank you in advance for being patient with me.

Partaking of the forbidden fruit

Whole grapefruit and cut into parts

Were I a more diligent Jew, I’d be depriving myself of leavened bread through the 8 days of Passover, along with my fellow tribe members. But I haven’t been diligent. Apologies, Almighty, I have failed you in so many ways. Bread is merely the tip of the iceberg.

Yesterday, J. and I dropped by the specialty grocer and were inundated with generous samples. Cubes of roasted maple ham, bacon and avocado panini bites, need I say more? Then we enjoyed a delicious Easter dinner with friends. The menu? Pancetta-wrapped pork roast. I could have refused it all, but I didn’t. Leavened bread aside, I’ve also broken the no-pork-over-Passover rule. I am a sinner, not a saint.

This is not the subject of my post, however. I wanted to write about the real forbidden fruit. I’m speaking of grapefruit. For 5-1/2 long years, I have been on CML-busting medication that interacts with a compound found in grapefruit. For those 5-1/2 years, I have been grapefruit free, barring the occasional grapefruit Jelly Belly or wine gum. I lapsed once, relishing one piece of J.’s freshly peeled grapefruit, but otherwise, I have heeded orders of complete abstention.

Through the many recent changes to my medications, I wondered whether I had eliminated all the drugs that made grapefruit my forbidden fruit. I stopped by the pharmacy to inquire, and my trusty pharmacist reassured me that I could again safely consume grapefruit. Hallelujah! Grapefruit, here I come.

Do you know what happens when I’m told there’s something I cannot eat? I want it more. I crave it desperately. I can’t imagine my life without it. Until, eventually, my preoccupation wanes and I move on. I understand a smoker can feel this way years after quitting, as can an alcoholic who has long stopped boozing.

When the pharmacist confirmed that grapefruit was off my no-eat list, I headed directly to the produce section of the supermarket and assessed every single grapefruit until I found the best one there. Unfortunately, prime grapefruit season has passed, so the pickings were slim. Most of the remaining fruit were shrivelled and old, but there was one perfect specimen with a nice thin shiny skin. So I bought myself this gift of grapefruit, brought it home, and snarfed it down.

This first grapefruit was almost perfect. It was delicious and sweet, but sadly it was overripe and mushy. Grapefruit needs a bit of texture, don’t you think? If I’d wanted juice, I could have bought juice. I tried to focus on the taste rather than the texture, but I admit it was a letdown. Truth is, my prohibition has lifted as grapefruit season is ending, and that grapefruit is probably the best I’m going to find over the next several months.

And so I must ask you a small favour: next time you’re at the grocery store, would you look for the freshest, shiniest, tastiest grapefruit you can find? If you love me, you’ll buy it and drop it off at my house. I’ll be forever grateful.

As far as I know, there are no prohibitions against eating grapefruit over Passover. So eat it I will, with no fear of reprisal. Who knows? Maybe it will curb my craving for pork.

Even a realist believes in miracles

Israelites leaving Egypt through parting of Red Sea

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.

My drugs they are a changin’

Cartoon basset hound walking with frisbee in mouth

After my last post I was inundated with comforting comments, texts, and emails from far and wide. Have I mentioned how blessed I am to have such a warm community of support? I don’t know what I’d do without you guys. However hard it was to share my sadness, I don’t regret doing so.

I was a bit disappointed, though, that no one commented on my crying Saddy image. I was quite proud of my first GIPHY. It’s not too late to teach this old dog new tricks, so long as they’re easy ones.

Speaking of old, when I was out shopping today, the cashier spontaneously offered me a seniors’ discount. I wondered if I looked especially palliative to her. And I’d thought I was having a good day….

This brings us to yesterday’s appointment at the cancer centre, which was an improvement over the last few. I needn’t have fretted about what Dr. Blood Lite might find in this week’s blood work. There were even a few positives. My hemoglobin is holding steady, which I can tell–my energy has been much improved this past week–and my platelets are a smidgen higher than last tested. This means my brick-like spleen baby did not devour too many of my healthy blood cells this past week.

These findings warranted a number of medication changes. I am eliminating my steroids because they are not increasing my platelets as much as the doctor had hoped. This means that I can no longer blame my persistent crankiness on this medication. Time to start owning my irritability.

My performance-enhancing hormone, EPO, has been doing such a good job at eliminating my need for red-blood-cell transfusions that Dr. BL is trying to figure out whether I need it at all. He has suspended further injections for now. So much for a sustained increase in athletic stamina.

Dr. BL also suggested a vacation from my TKI, the targeted medication that destroys my CML cells. TKIs, like many chemotherapies, reduce all blood cell production, good cells and bad. When my platelets first started dropping a few months back, Dr. BL suggested a TKI break to see whether eliminating this drug might help increase my blood-cell counts.

The TKI has managed my CML effectively for so long that these mutant leukemia cells have been barely detectable in my blood for years now. Coming off the drug for a month or two is safe, from what I understand. Dr. BL reassured me that if my CML cell counts rise without the drug, I will get back on it and it will get back to work. Eliminating any potentially unnecessary medication is worth a try, especially if doing so will reduce my nosebleeds and bruising and the other annoyances of an inability to clot.

Next time you see me, you may be surprised to encounter an energetic, upbeat senior who, unfortunately, may not be able to keep pace with you on your next marathon. Still, feel free to hug me at the finish line, if I ever get there, taking care you don’t squeeze me too tight. Then we can go for coffee. But don’t even consider inviting me over to hang out on your white couch. Some days I’m still a bloody mess.

Saddy makes an appearance

Sadness doll crying

I have to be honest with you: last week’s posts were one big error of omission. I neglected to tell you how much time I was hanging out with Saddy. I realize I’ve been such a downer lately, and I didn’t want to drag you down with me. Also, I needed a bit of time to sort out how I was feeling before I shared it with y’all.

I’m afraid that if I don’t tell you about my down days, you’ll end up with a false impression of my coping skills. For years, I’ve looked around me and thought everyone dealing with cancer is functioning so much better than I am. All I could see were survivors who returned to work, or kept travelling afar, or simply lived a fuller life than mine despite the hindrances of their illness. I felt like a failure in comparison.

I realize now that we all have our tough days, and that we don’t tend to share those on Instagram. My life is no picnic right now, and some days all I can see is death looming. I am trying to live every day to its fullest, but last week I failed. I was obsessed with loss and dying. Don’t let my lighthearted posts suggest otherwise.

It started last Monday, when I received a call from a potential new client. At this point, it would be irresponsible of me to be anyone’s therapist. My health is unstable, my availability is unpredictable, and my mind is elsewhere. That, and my psychology registration officially ends this weekend. The office is closed, forever. I returned this lovely woman’s call, told her my practice was closing, and sent her on to someone else. Then I hung up the phone and I cried. At another time in my life, I could have helped her, but not now.

That day, and the rest of the week, I was completely overwhelmed with sadness. The long day at the cancer centre, and the troubling news from the doctor, didn’t help. I’ve been stewing about whether I’m going to survive the year the doctor initially predicted, and what my quality of life will be like if I do.

Cancer is crummy and dying is hard, and maybe I should stop trying to make light of what I’m going through. I don’t know if I’m trying to protect you or me from my reality, but it’s not working. Sometimes the upset and the fear and the depression take over.

But I can’t stay in any dark place indefinitely, because I’d be wasting whatever time I do have left. That’s where my wonderful support system steps in. I continue to receive frequent supportive texts and emails. Jelly and I enjoyed two wonderful PALS visits, where I could focus on bringing others joy. On Friday, I came home to a gorgeous hand-sewn dog quilt at my doorstep, my long-distance friend’s way of hugging me from afar. Saturday I loved every minute of my danish baking class, and we enjoyed a play with friends on Sunday.

Death may be looming, but I am reminded that I must not stop living yet. I’ve told Saddy she has the week off. Sometimes even the closest friends need a break from one another.

Saddy on couch with dog quilt