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"

 

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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.

 

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.

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.

How to survive a jump off the cliff

Whoops! I guess I’ve been misspeaking by calling my CML drug chemotherapy. The daily medication I’m on is not technically a chemotherapy. My tyrosine-kinase inhibitors (TKIs) are actually called targeted therapies. They stop my CML-causing genetic mutation from producing leukemia cells, and they really work. At last count, there were very few of these deadly cells hanging out inside me.

The only problem with TKIs is that they have side effects that can render them intolerable for some patients. I’ve had few difficulties with the medication–I barely notice I’m on it–with occasional exceptions. While it effectively inhibits my cancer cells, my TKI reduces the production of my white cells and platelets as well. That’s why my white blood count is much lower than it used to be, which is not a bad thing. It’s the TKIs’ platelet-lowering effect that is proving to be problematic of late.

When my liver was misbehaving a few weeks back, Dr. Blood Lite was concerned about my lack of platelets. There just weren’t enough of those sticky cells swimming around. This makes me vulnerable to bruising and bleeding. I had noticed small changes that I had attributed to the perils of travel. I always come home bruised from vacation, mostly due to my clumsy suitcase handling. This time I was covered in black and blue, although I hadn’t had any major incidents like falling or walking into walls. I must have been going through a sensitive period.

My bruises started healing upon my return, and indeed my platelet counts had risen when last assessed. Over the past few days, I may be having a little backslide, however. One bruise I can attribute to yesterday’s gruelling dolphin pose in yoga class. God did not intend for my body to mimic the dolphin. Dolphin pose puts a lot of pressure on my elbows, so the bruising is almost expected.

Only this morning’s repeat blood test will confirm whether my platelets have tanked again. If they are low, Dr. Blood Lite may insist I suspend my TKIs for a few weeks to allow my bone marrow a reprieve. As he said, my drug has been working so well that a few weeks off should not be a problem.

A drug holiday is not a problem for him, I’m sure, but how about me? If you were on a medication that was keeping you alive, would you want to tamper with it? To me, this feels like bungee jumping with a faulty cord. Oh, and a deadly fear of heights. I know rationally that a break from my TKIs will not make my leukemia cells proliferate wildly, but I’m not always rational at times like this.

If the doctor suspends my TKIs, I will take that leap of faith since I trust him with my life. I will close my eyes and jump. I may know that I’ll be fine with a short reprieve, yet I’ll feel better once I can resume treatment again. To me, it will feel like being back on solid ground.

In the meantime, no more dolphin poses for me. Better safe than bruised.

woman bungee jumping in midair

Celebrate your milestones, whatever they are

3 Light the Night walkers with their Survivor t-shirts

We leave on our big vacation in 12 sleeps. When we were first planning this vacation, J. told me her rush of fall weddings would end immediately following Thanksgiving. We could be on the plane already, except I didn’t want to miss the annual leukemia walk. Which would you choose, a trip to Israel or a leukemia walk? Don’t answer that.

This decision to delay the vacation may not make sense to you; I’m a little bewildered by it myself. Going on this annual walk, hanging out with my fellow leukemics, wearing my guest-of-honour SURVIVOR t-shirt, has become a significant event in my year. I’ll try to explain.

My definition of a milestone has changed over my five years with leukemia. After I became so sick, I was proud of being able to walk unassisted and to tie my shoes without falling over. I vividly recall my first post-diagnosis yoga class, which I survived despite falling over a few times. I remember cooking my first real dinner post diagnosis, and seeing my first client. Being alert enough to drive again was another milestone.

As time passes, the goals have shifted. There’s the annual Cancer Centre’s Christmas gift-basket draw, which means I’m alive to lose my money again for a good cause. I don’t hate my birthday anymore, and the importance of cancerversaries is self-explanatory. For whatever reason, this leukemia walk has taken on an odd significance in my annual calendar. It’s my prize for getting leukemia and not dying from it.

This year’s will be all the more special because I will finally receive my 5-year pin. Now you know the real reason I delayed my vacation: I wanted a silly little commemorative pin. Frankly, I could have lied about how many years I’d had the illness and received this pin anytime–no one asks for a doctor’s letter–but I’m too honest for such deception.

This coveted pin is nothing to speak of. It’s the shape and colour of a drop of blood with a 5 on it. The blood-drop symbol is almost identical to that used by Canadian Blood Services. When I wear my pin proudly, people may well assume I am a blood donor (I selfishly only take blood), and not a leukemia survivor.

Does it matter that the pin will have meaning only to me? Of course not. If anyone asks, I can always set them straight. (Ha ha. “Gay person sets unknowing one straight.” And they say we’re out [no pun intended, truly] to convert people!)

When I was first diagnosed with cancer, I never envisioned reaching goals like these. Now, planning for my next milestone keeps me hopeful that leukemia is not going to take my life. No wonder cancer-related goals, however insignificant, have become so important to me.

Then, two days later, J. and I will leave for Israel. Who ever thought I’d get any doctor’s blessing to travel so far? Yet another cause for celebration. That and anticipation of the best hummus and falafel anywhere. I can almost taste it….

A plate of hummus with falafel balls in the middle

Sometimes it’s best not to keep score

Newspaper on doorstep

First, let’s get the Facebook page out of the way. To those of you who have kindly sent me Friend requests, I am not ignoring you; I am simply paralyzed by my ineptness. I learned the hard way that there is a difference between a Facebook account and a Facebook page, and had to shut my first attempts down. I will get back to you when I manage to sort my page out.

Now a question for those of you who have your paper delivered: did your newspaper arrive at your doorstep this morning? If it did not, I think I can explain. I received it. Ever since I left those stale banana chocolate chip muffins out for Mr. RAK, we have awoken to one or sometimes even two newspapers on our doorstep. I may have to rename Mr. RAK Mr. DAK (as in “Daily Acts of Kindness”) because he has been so generous with us.

You can imagine that I, who am prone to guilt in much lesser circumstances, am overwhelmed with this current situation. This man receives no financial compensation for his generosity toward us, and I genuinely believe he is not trying to encourage us to reinitiate our subscription. My gratitude is killing me.

Of course I keep a mental tally of the give and take in any relationship. If I feel I’m giving too much over time, either I try to address the inequity with the person directly (when I’m in a grown-up mood) or, if I’m feeling more child like, I withdraw from that person. According to my usual tally system, I’m always in the red. Always. So a situation like the one with Mr. DAK, where I’m getting a lot more than I’m giving, torments me.

I am trying to practice allowing someone–in this case, Mr. DAK, to be kind to me. But in order to rebalance things just a bit, as soon as I finish this post, I will be baking a batch of oatmeal cranberry cookies to leave for him tomorrow morning, when he will be dropping by with an extra newspaper for us. I give thanks to you, Mr. DAK.

I was discussing the newspaper situation with a neighbourhood friend who happens to pay for her daily paper delivery. She mentioned that every so often, maybe once a month, her newspaper does not arrive. As she was discussing this with me, she said, “Hey, wait a minute….” We agreed that maybe Mr. DAK, in a Robin-Hoodish manner, is stealing from the subscribers and giving to the nonsubscribers. So if you’re my neighbour and your newspaper doesn’t arrive, feel free to take ours. God knows we haven’t paid for it. Consider it your way of assuaging my guilt.

Happy Thanksgiving. May you all have much to be grateful for this weekend.

 

P.S. I’ve had a few enquiries about this year’s Light the Night Walk for Leukemia on Saturday, October 21. You are more than welcome to join us. The team name is Annie’s Anemic Leukemics, and the registration link is here. If you are interested in celebrating my fifth cancerversary with me, come on out. All the better if you’re an Olympic weightlifter: you can carry me over the finish line if I get too pooped to walk.

Remission by any other name….

Did you notice I popped the R word into the last blog post? Perhaps it would have been more accurate for me to write “complete molecular response”. What is this, you ask (or maybe you don’t, but since I think it’s kind of interesting I’m going to tell you anyway)?

As I explain, please understand as I dumb this math down for myself. Math isn’t my strong point. Did I ever tell you my high-school math teacher, after tutoring me for months, suggested I drop the course before the exam to spare me an F on my graduating report card? Thank you, Mr. Fox.

The very smart hematologist who suspected I had CML took a bone-marrow biopsy, both to confirm her diagnosis, to stage the illness, and to get a baseline count of how many mutated cells I had. She determined, from this information, that I was in the chronic phase of the disorder, which is the first of three stages. Forget the F in math; thanks to this doctor, I received an A in CML. Now, every three to six months, I undergo genetic testing of my blood (commonly known as a PCR in CML circles) to determine how many cells with my special Philadelphia chromosome are coursing through my blood.

Within 12 months of treatment, I had attained a 4-log reduction (apologies to any mathematicians if I’ve written this incorrectly) in these cells, which means I had 1/10,000 of the leukemia cells I’d had upon diagnosis. Most CML patients who are diligent about taking their special Philadelphia-busting medications fall within this range or even lower within the first year of treatment. I am nothing if not diligent. I imagine you would be too if a doctor told you that carelessness could result in your leukemia progressing and potentially killing you.

So here’s the $128,000 question (inflation and all): If CML patients are in remission, a.k.a., at the stage of major molecular response, what would happen if we stopped taking the medication we were initially told we’d have to remain on for the rest of our lives? Sounds like an interesting research question, doesn’t it?

Normally I’m first in line to try something new. Hot new restaurant in town? I may not eat there, but I’ll know all about it. Hot new clothing store? I’ll tell you where it is. Hot new park in town? Let’s check it out, Jelly.

How about a hot new study for CML patients who want to rid themselves of the nasty side effects of their medications and are willing to stop taking the drugs altogether just to see what happens? No thanks. I’ll pass.

I’ve been a guinea pig for physicians in training over the last 17 years now. I can’t tell you (and not simply because I’m terrible at math) how many hands have palpated my ginormous spleen. That being said, I’m perfectly happy with my major molecular response, thanks; some other brave CML patients can step up to this plate and ditch their drugs in my stead. Once you docs are sure my leukemia won’t return or even progress to a more dangerous stage without my medication, maybe then I’ll consider going drug free. Good luck finding subjects!

Guinea pig

This is the old me.

 

Ah, ha, ha, ha, stayin’ alive

 

Did you miss National Cancer Survivors Day yesterday? Not to worry, so did I. I scored nary an invite to any of the festivities. I’m not even sure I am a cancer survivor; all I know is that my cancer hasn’t killed me yet.

Turns out I’ve got a good cancer, if there is such a thing, one that people can live with for many years. And since most of the time I’m in complete denial about my co-existing conditions (my impaired liver and my polycythemia–Happy 17th Polycythemaversary, by the way), I can pretend I too will be one of these people who will live a long life.

One of the main reasons I don’t feel like a true survivor is that I still take daily medications to keep my leukemia at bay. Oh, and my regular visits to the Cancer Centre. There’s nothing like hanging out amongst my cancerous peers to remind me I’ve still got the big C.

Unlike many other cancerous folk, I have very few leukemia cells now, according to most recent testing. So few that, in a CML patient booklet I just read, I am considered in remission. No one has used the R word with me before; in fact, when I was first diagnosed, I was told people with CML don’t go into remission. I was as surprised as you may be. If I’ve misled you, I did it unintentionally.

I also learned from that informative booklet that, with the advances in treatment of CML, many of us are living to a ripe old age. The focus of intervention has shifted from treatment to our quality of life. That part I get, now that I have reached Day 7 of The Wrath of the Gouty Finger. The leukemia isn’t so bad; it’s the symptoms and medication side effects that I find challenging.

So I’d like to suggest a new day of celebration more appropriate to those of us with CML. Let’s call it National Cancer-Symptoms Survivors Day. We’d be celebrating maintaining our quality of life while living with the threat of a potentially terminal illness hanging over our heads. We gatherers could compare notes on our various medication side effects and how we have survived them. We could share information about the interventions we’ve added on to manage those side effects.

I can think of many ways such a get together could benefit me. I’m sure there’s a CML survivor out there who would know how to manage yoga postures that require my lying on my belly. “Do you also have to rearrange the position of your football-sized spleen when you lie down?” I’d ask. Or how about our unrelenting fatigue? “Do you too fall asleep during matinees? How do you keep yourself from snoring?” Then there are the challenges of taking all those drugs. “How do you manage to time your medications to minimize all drug and food interactions?” The possibilities are endless!

We’ll plan our special day to coincide with the National Cancer Survivors Day. Then those of us who feel left out will have somewhere to go where we feel a sense of belonging. We all need to feel we belong somewhere.

Cut out figures holding hands