Brace yourselves for a bad news post

Magen David within heart, Jewish hospice symbol

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.

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How many mitzvot does it take to change a life?

All it takes is one good deed--doves flying around world with banner

It has come to my attention that I need to clarify last Friday’s post. Do you really think I’d hallucinate a perfectly braided six-strand challah? Or a hockey pool trophy? A prize-worthy freshly baked pie? Is my hockey pool win that unfathomable?

But do you really think I’d go so far as to fake a morphine hallucination? Would I stoop that low? No, kids, I was not hallucinating. I’m sorry if my tongue was not implanted firmly enough in my cheek. Despite my persistent proclamations otherwise, I am sad to report that I would lie to you after all. In the coming weeks, perhaps we can work on rebuilding trust.

The last week has been a whirlwind. Out-of-town visitors, two units of red blood cells, a baking extravaganza, and not just one but two blood donor clinics held in my honour last Saturday. After weeks of preparation, Supercousin in Toronto and Superfriend in Calgary pulled off the impossible: they gathered donors near and far to give the Gift of Life in my honour.

Those who could not give blood contributed in other selfless ways–they provided home-baked goods, singing, and moral support–while those who could donate made time, some overcoming paralyzing needle phobias, in support of an important cause.

Those donors who were not available at either site that day made appointments to donate on other days. There were many first-time donors who breezed right through, realizing that the process is easy peasy and wondering why they’d never donated previously. I wouldn’t be surprised if they found themselves donating again in the future.

The generous donors, young and old, first timers and repeat attenders, who participated on Saturday, know that I am dying. They want to feel they can contribute to prolonging my life in whatever way they can. Our dear Calgary friends who happened to be in Toronto this past weekend dropped in on the Toronto clinic so they could participate, roping their relatives into donating on their behalf. Many of the mensches I had not even met before.

So how many mitzvot does it take to change a life? One would have been enough, but there were so many freely given on Saturday, I lost count. All of these mensches taking an hour or two or three out of their day to give that most precious gift, not just of life but of hope and support. Were our roles reversed, I’d only hope I would do the same for you.

This week, when I may well need a red-blood-cell top up yet again, I will be thinking of all of you, whether you donated or not, knowing that you did whatever you could for me.

For the months leading up to Super Saturday, I felt loved and nurtured. People understood the urgent need for blood, not just for me but for others in my predicament. I’m not the only one benefitting from mensches like you.

So thanks. A lot. I wouldn’t be alive without you.

I’ve decided it takes only one mitzvah to change a life. Everything else is icing on the lemon-poppy seed cake. And I’d hope, were our roles reversed, I’d give as freely to you as you have given to me.

A night to remember and cherish

Plate of latke, salad, and bagel with lox and cream cheese along with brochure for cooking class

I try not to speak for others, but I daresay we all enjoyed ourselves at last night’s Jewish cooking class. Thanks to the we’ll-try-anything attitude of 14 special friends, and Judy’s powers of persuasion, the previously cancelled class ended up filled to overflowing with dear friends from all walks of our lives. They mingled and fumbled and helped one another to assemble rugalach and knishes, ending up with substantial overflow to bake up at home.

The instructor made a mean knish. Sure, the potential knish fillings he provided included bacon, but at least he acknowledged the irony. My conscience allowed me to add a few porky bits. (Any moral superiority implied in adding a few vs. a ton of bacon is questionable.) I didn’t ask, but I imagine the other two Jews present added bacon to theirs as well. J. added a lot more bacony goodness, and hers tasted better for it.

The instructor also demoed latke making, which we weren’t expecting, for good measure. Sure, Bubi would never have added garlic to her latkes, but I granted him creative license and choked that fried deliciousness down. We were there for tasty Jewish food, but more importantly, the company of good friends.

Could it have been a more perfect evening? When I looked around the room, I saw people having fun, enjoying one another, and glad to be there. I could not have asked for anything more.

But the wonders of the evening didn’t stop there. One friend secretly sewed me a gorgeous apron that all attendees signed. The inscriptions were beautiful, and J. had to wrest it from me at bedtime before I put it on over my pyjamas because of the greasy, floury mess I’d made. What a beautiful and thoughtful memory of the evening.

Another couple shared news of their long-awaited pregnancy, complete with ultrasound photo. I have been biting my tongue until it bleeds not to ask if there are any challah buns in the oven. Parents extraordinaire they will be.

Kudos to every person there, who showed up simply because it was important to us.

At the end of the class, the instructor pulled me aside to ask if I was happy with the outcome. I told him I was indeed, and explained that the class was especially important to me because I didn’t expect to live long enough to attend. He told me he was happy to be able to provide a distraction from my reality for at least a few hours.

A few hours?? How about the whole week leading up to the class when, after being so distressed over the cancellation, I learned J. had resurrected the evening with a little help from our friends? The joy I felt when J. described the immediate responses to the invitations? The friends who regretted they could not attend but offered to pay for a spot to ensure the class would happen? The excitement of anticipating everyone’s enjoyment of the evening, and creating memories for all?

The distraction is not over yet. We have a lot of baking left to do. Anyone want some porky potato knishes hot from the oven? I’m sure J. would be more than willing to share.

 

Finally, a reason to believe in a Higher Power

I’ve had a fraught relationship with God for many years now. I want to believe in The Guy (or Gal) but it’s hard not to want to blame Him for my predicament. My polycythemia, a disease of older Jewish men, was diagnosed at 36. At age 54, I’ve had this life-threatening illness hanging over me for a third of my adult life.

Twelve years later leukemia revealed itself, followed by my near-death experience. The second diagnosis compounded my health anxiety, especially when my then-hematologist told me that the effective medications for my type of leukemia would fail because of my preexisting polycythemia. I ditched him immediately so I wouldn’t die prematurely of anxiety.

I never wanted to believe that any God I know would want to put me through a long, torturous trial like this. Sure, I could chalk it up to bad luck, but couldn’t He have chosen someone with the emotional resources to handle such challenges? I am not that person.

As I near death, I’m trying to open my mind to God. I’ve been meeting with the rabbi, although we haven’t talked about the Big Guy much, if at all. I do take comfort from the rabbi, who clearly has a better connection to the heavens than I do. He’s got to believe in The Guy or he wouldn’t have chosen this profession that suits him so well. He’s proven himself kind and compassionate and he’s supporting me gently through my impending death.

Maybe I’m a stereotype, the kind of person who seeks God as her days are numbered. I wouldn’t put it past me, opportunist that I am.

But over the past few weeks, He’s finally given me a sign that He’s watching and He cares. I’m talking about the annual hockey pool. Every year, J. selects a team for me and a different team for herself. I would have no idea who to choose, so I leave it up to her. Through the playoffs, we skip the hockey, but check our pool standings diligently every morning.

In past years, my players have started out near the top of the standings, but by the end I’m close to the bottom. And every year, for as long as I’ve been participating, one woman wins the pool by a long shot. She must pay for insider information.

The playoffs are three rounds in and not only am I still standing, I’m leading Ms. Insider by 6 points. Barring an unforeseen disaster, I am on track to win the pool this year. Not only that, I’ve left J. in the dust: she is currently 48 points behind me.

You do see the irony here, don’t you? I say I’m beating J., when in fact she’s the one who chose both her team and mine. Had she decided to switch our teams between us, she would be the one eliminating my chances and testing Ms. Insider’s invincibility. Too late for that, honey. It’s Annie for the win.

Although He may have beaten me down for many years now, I am grateful that in this, my final months, God has seen fit to allow me a victory, however unearned. I’ve finally found my compassionate God. Thank heavens for small mercies.

Picture of ice with four hockey players, inlaid "Stanley Cup Playoffs"

 

Even when things are going well, thoughts of dying sneak in.

Picture of new Calgary Central Library

So many wonderful initiatives are happening on my behalf, I don’t know where to start. Supercousin has already confirmed 24 family and friends in Toronto, and many more who wished they could donate but are unable, for the June 16 Toronto blood donor clinic in my honour.

Now Superfriend in Calgary has stepped in to arrange for a donor clinic here on the same day. She has already confirmed 10 people, many of whom I don’t even know, to fill the 15 chairs she’s holding. Contact me if you’re in Calgary and you have it in you to give; I’ll connect you with Superfriend. I’m sure we can fill those chairs. Those who can’t donate for whatever reason have offered moral and culinary support.

As if that’s not enough, over the past few months, my Superkin have been arranging another special honour. You know what a library nerd I am, how I worked in libraries for years and how I still love to hang out in the stacks. Every so often I even reshelve a book that’s out of place, for old time’s sake.

On November 1, 2018, Calgary will be opening its architecturally stunning new downtown library. As a fundraiser, people can buy windows for inscription. So my Superkin arranged to buy me a window, which will be inscribed for the next 25 years with my name and a few descriptive words of J.’s choosing.

But Superkins’ donations were so generous that they quickly purchased one window, and, with the overflow, decided to purchase a second window for J. Truly, she deserves a window more than me,. She’s been by my side through years of illness, caring for me without complaint, patiently adjusting to my slowing pace, and never abandoning ship. I was overjoyed to come up with her inscription, which not surprisingly ends with, “Never an overdue fine.”

I am trying to see only the joy in all of this, but there is something hanging over me: I’m going to die, and it may happen before any of these events transpire. It didn’t help that I woke up with a visible lump on my neck this morning, perhaps a lymph node saying hello. My mind immediately went to dying, as it tends to do. J. called the cancer centre and the nurse told us to hang loose until we see Dr. Blood Lite tomorrow. No need to contact the funeral home after all.

Since I’ve learned that I am palliative, I’ve tried to keep living my life, planning for events down the road as if I would be there to participate. No one has given me an exact end date, and even if I knew the date, wouldn’t I want to keep living until I die?

There’s a Jewish cooking class being offered at the end of May, and I signed up, after some hesitation. How often do you think Jewish cooking classes are offered in Calgary? Never. Signing up for the class gave me a goal. Then there’s the blood donor clinic in mid-June, and the library opening in mid-November.

Hey, do you think they’d let us don hard hats so we could view our library windows before the official opening? I might just have to inquire.

 

I’ve always worked better with deadlines

Picture of gate into Jewish cemetery

Deadline is a funny word, isn’t it?

All I need is a deadline looming to spur me into action. I have one now, a final one, with no extensions, and lots left to do before it arrives. Boy have I been busy this week! It’s a good thing I got those two pints of red blood cells earlier this week.

Yesterday we met with the Reform rabbi whom I’m hoping will conduct my funeral even though I am not a member of his congregation. I’ve heard only good things about him from those who know him. He was as wonderful in person as he’d been described. I was surprised to learn that wanting to meet the person who will officiate one’s funeral is unusual. Wouldn’t you want to know the person who’d be sending you off? My goal was not to vet him but to know he’d be willing to take the job. He reassured me that he would.

I also wanted him to meet me. How many funerals have you been to where it was clear the officiant knew nothing about the person who’d died? I don’t want an impersonal ceremony. Sure, it was a hard meeting, and tears were shed, but moreso, J. and I were both deeply comforted.

Today we met with the lovely Jewish funeral director and visited the cemetery adjoining the funeral home, where I will ultimately be buried. I would like to choose my cemetery plot, although I’m hoping my spirit will reside elsewhere. Maybe you could all hold on to a bit of it after I’m gone? Just take the parts you like and leave the rest for the worms.

The director explained the process from death to burial, and made himself available for future questions. I was so relieved to hear about the openness of this organization to Jews at all levels observance. Like the rabbi, this fellow did not bat an eye at J.’s presence as my wife.

Finally, and less critically, I dropped by the optometrist’s office to return those contact lenses I’d recently purchased, figuring I likely wouldn’t need them. When I told the assistant I wanted a refund–I spared her an explanation of why–she seemed unusually miffed. She scurried into the back, returning a short time later with a colleague, who questioned my request. Why I was returning lenses that had worked so well for me for so long?

I was trying to spare the ladies my reality, but you know what happens when I’m pushed: I’m honest. So I told her, “I will not need them because I am dying. I won’t have sufficient time to use them.” She then cheerily refunded my money while her colleague looked on sheepishly. As I was leaving, Ms. Refunder said, “Hope to see you soon!” Did she mishear me? Her response was as insensitive as last week’s letter from the psychology college, I’d say.

Anger, anger, go away. You’re not helping matters. Better to focus on gratitude for these two lovely men who will guide us through this process of death and dying. Thanks to them, we both feel supported and comforted as we head into the final stretch. With so little control right now, we’re grateful to be able to make some, any decisions for ourselves.

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.

Yet another Jewish delicacy: hamantaschen

Triangular baked goods with two fillings called hamantaschen

You may not be aware that this week, Jews celebrated Purim, the happiest holiday in the Jewish calendar. I too might have forgotten without diligent prompting from the better Jews around me. You haven’t heard of Purim? The story, in short, is of good conquering evil. No wonder we celebrate.

Haman is the evil one. He happens to wear a three-cornered hat, which prompted a special-for-Purim baked good called hamantaschen, traditionally filled with jam or dried fruits or poppy seeds or nuts. These days, some adventurous bakers catering to their grandchildren and middle-aged nieces fill theirs with with speculoos spread or sour gummy bears.

One of the Purim traditions is not only to bake these delicious treats but to deliver them to loved ones. The special delivery is known as shalach manos.

Imagine my surprise when I received an unexpected package from my dear doting aunt on Wednesday. I wondered why she would be sending me something since I would see her  in Toronto the following week when J. and I visited. I ripped open the envelope to discover it was filled with freshly baked hamentaschen, which she orchestrated to arrive on Purim.

These hamantaschen came in handy yesterday as I was sitting for almost 3 hours receiving my last iron infusion. What does one do while wedded to an IV for hours except to eat? I had had trouble dragging myself out of bed that morning, so J. had made me a lunch with a salad and a variety of treats so I would not starve. Thank goodness she remembered to pack me a special speculoos-filled hamantasch.

But wait, it doesn’t end there. Thanks to the multicultural curriculum at a local preschool, a friend’s daughter learned all about Purim this week. Armed with this knowledge, her mother, Ms. Artisan Baker, baked a special batch of date-orange hamantaschen for her Jewish friend (that would be me).

I’m not sure if Ms. Baker was aware of shalach manos, but she participated in the tradition nonetheless. Imagine my surprise when J. came back from walking the dog yesterday holding a container of hamantaschen still warm from the oven, procured from Ms. Baker while she was on her special delivery.

I was amazed by Ms. Baker’s wares, especially since they were her first attempt. She must have weeded through the various heated debates amongst Jewish bakers about the recipe for the perfect hamantasch. There are doughs that are shortbread like and those that are softer and more pliable. Then there are no end of fillings. There are strong opinions about how to fold the dough so the filling does not leak out during the baking. Somehow Ms. Baker reviewed all this hamentasch lore and came up with a recipe rivalling that of my experienced aunt. And Ms. Baker is not even Jewish!

Within two days, I was the recipient of two batches of special treats baked and delivered with love. How lucky I am to have two people (three if I count the excellent lunch J. packed me) gracing me with shalach manos. Consider this one of the many benefits of being Jewish. I highly recommend my religion. The baked goods are simply a bonus.