You are not going to LIKE this post

thumbs down emoji

I created this blog as a way of sharing news about my health. When I first started writing, blogging seemed an effective way to keep people in the loop. Thanks to your diligent readership, the blog has helped me feel connected with you.

It can’t have been easy to read my posts sometimes. You have joined me on the ups and downs of my cancer roller coaster, sharing your wisdom and words of support. You’ve laughed at my jokes, which I realize are often funny only to me. You’ve stuck with me as I’ve muddled through both physically and emotionally. I couldn’t have asked for more from all of you.

You know my worries about my health have been rampant of late. I was hoping that my concerns about my recent bone marrow biopsy were unfounded, that my anxiety had gotten the better of me, that I was facing a challenge that was surmountable. Unfortunately, I was wrong. My story will not have a fairy tale ending today.

The results of the biopsy were not good. The fibrosis in my marrow has increased significantly since it was last assessed three years ago. The more scarring there is, the less space is left for healthy blood cells to be produced. This progression explains my recent anemia and my drop in platelets. Unfortunately, as the fibrosis continues to take over my marrow, my body will have increasing difficulty producing blood cells.

All is not lost, however. With the help of a red-blood-cell producing hormone and IV iron infusions, my red blood cell counts should improve in the immediate future. This will help me to feel less fatigued, thank goodness. I will also receive the occasional whole blood transfusion as needed. The doctor has reassured me that my low platelet count is manageable. We’ve agreed to my abstaining from tackle football and full-contact hockey for now.

Sadly, my health will continue to decline from here. At some point, there will be no more room in my bone marrow for the creation of blood cells. The methods I described of raising my red blood cell counts will no longer be effective. I will feel increasingly unwell, and yes, I will die.

The doctor asked if I wanted a time line. However anxious I am, I find not knowing much more stressful than knowing, so I said yes. He believes that I have a year or so left to live. This may not seem like much, but for me it is an eternity. I’ve had the fear of death hanging over me since I was first diagnosed with polycythemia 18 years ago, and I have outlived all predictions. Now I will be grateful for however long I have and will do my best to relish every moment. So will J.

There is so much more to tell you about what I’ve learned and what the next steps are, but I think this post has been heavy enough for one day. Furthermore, I rigidly adhere to my 500-word post limit no matter what. Thanks as always for reading. I’ll continue blogging for as long as I can, and hope you’ll stay on board. I could use your support now more than ever.

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How Canadian Blood Services saved my life

Woman's hand spraying and wiping a table clean, bucket in backgroundThis afternoon. I will be volunteering for the last time at Canadian Blood Services. I am hoping for a busy shift, so I can serve a lot of soup and dole out a lot of cookies. Time passes quickly when all those donor chairs are filled.

I owe a great deal to CBS. We are blessed with easy access to blood products when we need them in Canada. In the past, I have needed them. Whenever I did, the gift of life was there, thanks to the generosity of donors. When I was bleeding internally several years back and doctors couldn’t easily identify the source, a series of transfusions kept me alive.

I seem to be entering a phase of my illness where I may again need frequent topping up. Last week I was infused with mega doses of platelets. On Friday, I was due to receive two units of whole blood but the transfusion was cancelled last minute when my body decided to ramp up its own blood-cell production. I am leaving CBS as my need for its products is rising.

Sometimes I worry about how the clinic will run without me, which is ridiculous because it was running well without me before I got there and will thrive with the fresh blood of new volunteers. I’m not irreplaceable. But who can better thank the donors for coming? Who will be able to stress how important their donations are from personal experience? And who will wipe the tables after the donors leave? There’s a stray cookie crumb hiding on every table.

I have worked with many wonderful volunteers over the past year and a half at CBS. Many are students seeking entry to science programs or medicine. Others are grown adults like me who have some connection to blood donation through their own or others’ need. Some have set ways of doing things, while others go with the flow.

Some volunteers provide soup with one package of salty crackers while others give two packs; some push the cookies while others encourage fluids, offering juice or pop; some stock the shelves while others schmooze with donors. There have been long discussions over whether to place the spoons facing up or down in the dishwasher. This I do not feel strongly about, although I’ve learned that others do.

Somehow I have become obsessed with wiping the tables. Whichever shift I’m on, I assume the task of cleaning up after donors leave. Call me the table-wiping overfunctioner. Knowing I am quick to eradicate table messes, my fellow volunteers have learned to underfunction, i.e., to neglect that task altogether. Take note, all you overfunctioners out there: leave work for others to do; they will do it in their own time.

It’s a good thing I’m leaving, then, since cleaning tables is a good skill for all to acquire, especially the young ones who will soon move out of their parents’ homes. I’ll do one final swipe before I depart this afternoon. Then I’ll say good bye, knowing someone will pick up the cloth within minutes of my leaving. Maybe the new table wiper will do a better job than me. Maybe I’ll surprise J. and start wiping counters at home. Stranger things have happened.

A sure way to generate LIKES for your posts

Black puppy wearing tie in Adopt Me shotAs you may have noticed, matters have become quite serious at my place. I don’t know how you guys are hanging in because it hasn’t been all rainbows and puppy dogs here lately. (That’s not really accurate; there have been a few puppy dogs; I can’t help it.)

I’ve been dealing with significant changes in my health, and I’m still awaiting the outcome of my bone marrow biopsy next week. This past few weeks, I’ve been spending an inordinate amount of time at the cancer centre sorting my sick body out. Being a patient has become a full-time job, and, trust me, there are so many other ways I’d rather be spending my time.

Despite this turn of events, my blog has had a flurry of new visitors lately. My 300th follower signed on this week. Welcome to my personal soap opera! Thanks to all of you who have shown an interest of late, and to those of you who’ve been with me for a while. I’m not sure what has brought you here, but I’m grateful for your interest in my life.

Over the past while, I’ve also had a huge increase in Likes, at least for me. When 11 readers Liked a recent post, WordPress informed me I’d attained a personal record. I didn’t even think it was that great a post, to be honest.

I’ve always found Likes a bit funny because I’m not sure what Like means in certain contexts. If I’m in distress, how about an I Feel for You, or a That Sucks emoji? I know; those emojis don’t exist in the world of blogging. I’m not meaning to sound ungrateful for the Likes since I know you don’t have access to other emotional reactions to a post. Maybe WordPress should follow Facebook’s initiative by allowing a variety of reactions beyond Like.

I honestly don’t deserve to be Liked. I don’t Like others’ posts, and I don’t follow others’ blogs, as those bloggers who’ve been on board for a while know. I lack the social graces you savvy social media types possess. Furthermore, I am too overwhelmed with my own life to read others’ stories. Frankly, I avoid others’ blogs because I don’t want to be reading the type of material I’ve been posting lately. Bad news in others’ lives would surely fuel my own distress, and I’m barely hanging on here as it is.

I’ve realized, by the recent uptick in Likes, that many readers are drawn to trauma and sadness and emotional upheaval more than to the humour or triteness that is my specialty. Why, I wonder. Somehow you tolerate the sordid and sometimes depressing details of my life; I’d have fled my blog screaming long ago if I were you.

You don’t need my permission (encouragement?) to bail now before my life gets messy. I fear, for your sake, that you won’t want to go because things are just starting to get interesting. Maybe you’re gluttons for punishment. It can’t be a party to hang out with me lately, but it’s your choice.

So feel free to keep Liking if you feel so inclined. I’ll interpret your Likes as your unfailing support and kindness, even through bad times. For that, I Like you too.

Like emoji--hand with thumb pointed up

The challenges of ladling hot soup

Soup in bowl with crackers on side

Do you folks recall when I started volunteering? In the summer of 2016 I started applying for positions, unsure whether I’d be accepted for work because of my leukemia. Neither agency I approached seemed to exclude me on the basis of my illness, so unexpectedly I ended up with two volunteer gigs rather than one. I started at Canadian Blood Services in September 2016 and at PALS with Jelly a few months later.

I never thought I could sustain two weekly commitments for long, as much as I enjoyed both. I figured keeping up that pace would draw on too much of my precious energy. Some weeks were tough but I managed to attend the vast majority of my scheduled shifts. My health has been so remarkably stable over this time that there’s been no need to bail.

But, as you well know, loyal readers, my health is changing in ways I don’t yet understand. And these changes have necessitated an increasing number of doctors appointments. Jelly and I had to bail on our scheduled PALS visit last week because of my corkscrew procedure, for example.

Over the next while, I anticipate ramping up my time at the cancer centre, whether for appointments with Dr. Blood Lite, blood transfusions (thank you dear donors), or other procedures. Sometimes I’ll have sufficient notice to work around my volunteer schedule but at other times, like last week’s biopsy which I was informed of the day prior, I will not.

After considerable deliberation during one of my sleepless nights–I’m trying to make my middle-of-the-night awakenings productive–I gave notice at Canadian Blood Services a few days ago. I will have one final shift next week and then I will no longer be spending my Monday afternoons feeding people soup, juice, and cookies. I can no longer manage the two hours of heavy lifting–those soup cans weigh a ton–and dishwashing and table wiping and encouraging the donors to come back again soon. I am so wiped by the end of my shifts that even the drive home through rush hour traffic is becoming a challenge.

I could have left PALS instead, but our visits are shorter and less physically demanding. I transport Jelly to the visit site, sit on a chair while Jelly lays on the floor, and don’t move much until the visit is over. Also, Jelly has told me she’d like to keep PALSing, especially since some days her ageing body is not up to a walk. These visits get both of us out of the house with minimal effort.

Still, CBS had its own rewards. I was thrilled by the sight of a busy clinic, or of regular donors reaching milestone donations. I loved meeting first-time donors who realized the process was a breeze and planned to return. And I took great pride in eventually mastering soup ladling without major spillage or skin burnage. Not everyone belongs in food services.

I was an abject failure at one responsibility, however: I panicked on the rare occasion when someone fainted after donating. My ability to manage such crises did not improve over time. Thank goodness others could step in when I froze. We all have our shortcomings.

The dangers of following in Chicken Little’s footsteps

Newspaper heading: The sky is falling

Warning to all: if you ask me how I am, I will respond honestly. Expect an earful of my medical worries, and of the challenges of waiting for more information. Is Dr. Blood Lite’s recent concern valid? This question will not be answered until next Tuesday morning.

Considering what I was dealing with, I felt that I was holding it together at least somewhat. I wasn’t happy and, in fact, me and my little blue Sadness doll were likely spending an excessive amount of time together on the couch. I also had moments of panic because Chicken Little is my first cousin. After the initial shock passed, I felt I was coming to terms with the fact that my health may be in peril.

Then I got more bad news. Prior to the corkscrew procedure last week, the doctor sent me for blood work, which he reviewed with me before I left. In only a week, my red blood count had dropped significantly, to the point of my potentially needing a transfusion.

These ups and downs in various blood counts are not new. Sometimes the doctors know why and sometimes they don’t. In this case, with so much hanging over me, that little piece of potentially bad news threw me over the edge. I was a basket case for the following few days. A mess. Hopeless and terrified. Many tears were shed between naps.

My discombobulation is a reminder that despite my efforts to prepare myself for whatever may come, when I am truly threatened, all that preparation flies out the window. In this case, when I wasn’t overwhelmed during the day, I had dream after dream of hospitals and illness at night. There was no rest for the very weary.

What I managed to forget was that I don’t cope well emotionally when I’m feeling crummy physically. Because of the anemia, I’m exhausted and all I want to do is sleep. I am also likely dealing with the effects of withdrawal from the chemotherapy Dr. Blood Lite reduced two weeks ago. I recall vividly Dr. Blood telling me long ago that I should stay on it because the side effects of withdrawal are so aversive.

Somehow, Sunday morning at 2 a.m. when I chose insomnia over nightmares, I put one and one together: I realized my moving so quickly from feeling well to feeling sick was not helping my mood one bit. When I woke up Sunday morning, I didn’t have to drag myself out of bed. I made it to yoga, and even stayed awake through not one but two coffee dates later that day. My body did not demand a nap that day, and I felt better on all fronts. Today, despite a sleepless night, I feel even more like myself. Might my anemia be abating? I can only hope.

Sure, I’m still scared of what my little corkscrew procedure will reveal, and I’m expecting a sleepless night next Monday. Still, I can’t imagine feeling worse than I did last week when I could actually see the sky falling. Even if the sky does fall, I expect it will take some time to reach the ground.

Mastering the effective use of imagery in writing

Apple corer with three apples, one cored

How’s your week been? Mine’s been busy. Between blood draws and bone marrows, I’ve been run off my feet.

I’m sure you’re dying for a vivid description of the bone marrow procedure. I wish I could tell you that Ativan knocked out my memory for the experience, but, unfortunately, I took the pill a little late for that. I was barely wobbly through the procedure, but stoned for the two days following. Reminder to self: next time, take the pill early enough for it to take full effect.

The nurse helped me onto the hospital bed fully clothed, only to tell me I’d have to expose a wee bit of flesh. He suggested I half moon the doctor, and he was not referring to the advanced yoga pose. Thank goodness for my best underwear. Then the nurse moved my legs into the fetal position, lightly placing his hands on them so he could hold them down. Some patients feel the urge to kick the doctor once he starts working.

The procedure itself was almost a breeze, truly. Dr. Blood Lite froze my half moon first, and then got to work. The needle itself felt like dull pressure, with the odd brief pain thrown in. At no point did I feel like kicking anyone, so rather than hold me down, the nurse regaled me with stories of his new girlfriend and his world travels. His levity was the perfect antidote.

Through it all, the doctor was calm and efficient, informing me of what he was doing and frequently assessing how I was tolerating the procedure. He could not see my expression since he was facing my half-draped posterior, but he frequently looked to J. for feedback.

This whole experience made me wonder how a doctor as caring and gentle as mine can undertake a procedure that is going to hurt his patient. He has to gather that information somehow, but how does he tolerate knowing that he’s causing pain? I feel for him.

His discomfort shouldn’t have been my focus during that procedure, however. I am often so worried about others’ distress that I completely forget about how I’m feeling. Or maybe not, at least in this case. Despite my concern for my sensitive doctor, I clutched J.’s hand so fiercely that I could have injured her. When the doctor looked to J. for feedback, he may have mistaken her grimace for smiling.

In the end, after several unsuccessful attempts at tapping me like a maple tree, i.e., bone marrow aspiration, the doctor had to move to the corkscrew–or is it apple coring?–method, known as bone-marrow biopsy. Thus, he removed a small cylindrical sample of my marrow, bone and all, for assessment. No biggie. In a few weeks’ time, my inner core, my deepest darkest self, will be revealed to all.

I will admit that I miss that little piece of me. I barely felt it at the time, but the ache in my lower back is a reminder of my loss. Thankfully Tylenol is effective at eradicating the pain.

I’m glad it’s over. Now I must wait. Since J.’s tooth is now healing, I’m open to happy distractions to pass the time. Coffee, anyone? They say it prevents cancer.

This is what happens when J. goes to the doctor (or the dentist)

Yellow upper case: Can I have your attention please?

You must be eager for an update on my last post. First off, thus far Jelly remains an only pup. I’m not hopeful.

Also, I am pleased to report that J.’s condition has improved dramatically. She has reduced her pain medication substantially, is eating more, and even sucked down a few potato chips yesterday. These are all excellent signs. Keep your fingers crossed that her infection has finally been quashed.

This medical crisis was uncharacteristic for J., who rarely visits the doctor. She doesn’t even have any specialists! When she does make an appointment with one of the medical professionals we share (Dr. Family, Dr. Tooth), I know she is terribly ill.

Sometimes when J. sees these docs, instead of focussing on her concerns, they ask about me. “How is Annie?” they inquire timidly. J., who oddly enough is not at the appointment to talk about me, finds their queries annoying. “Hello! I’m the patient here!” screams her inside voice.

I was first to see Dr. Root, the go-to guy for dental crises, years ago when I had a dental emergency that landed me in hospital. He treated me upon my discharge, ably fixing what a colleague had botched.

Dr. Root and I got along famously from the outset. Since my injury was so dramatic, he remembers both me and J. well from that initial encounter. He managed my care so well that J. has sought him out in her subsequent times of need. Of course she landed back in his chair last week.

While J. was writhing in pain in Dr. Root’s office last week, he asked her, not unexpectedly, how I was doing. As they chatted, J. could feel his anger escalating at how I had been treated long ago and the danger his colleague had placed me in. Then he showed J. the PowerPoint presentation he has used in his teaching ever since, which includes two head shots of me at my worst. I look like a monster, one side of my face and neck completely black and blue. When J. told me about this exchange, I realized I’ve become a haunting celebrity to local dental students. Thankfully I am unrecognizable in those shots.

I didn’t meant to hijack J.’s emergency appointment; I wasn’t even there. Even when I’m not there, I am, it seems.

Focus on the positive, J. You should stop complaining about these queries about me since occasionally our sharing medical professionals works in your favour. For example, I know you have slyly asked Dr. Family to check my thyroid if I’ve been crankier than usual. What joy you must feel seeing Dr. Family respond with her knowing smile.

Enough about J. already; let’s get back to me. Shortly, I will head to the Cancer Centre. Once I am in a drug-induced loopy state, Dr. Blood Lite will complete a procedure on me akin to tapping a maple tree. With the help of my Ativan, I will not leap off the hospital bed and flee in a panic. Today is no big deal, I say, but I’d appreciate your praying for me two weeks hence when we will reconvene to review the results. I’d do the same for you.

Picture of tap running out of maple tree

The glories of distraction, sometimes

When my life is in upheaval, as it was last week (Who am I kidding? It still is), distractions can help. I hope for good distractions, like the birth of a baby or a wedding or coming home to the new puppy I’ve been begging J. for.

[Insert short break here to complete daily check of rescue animal websites.]

What do you think of this one, J.?

Basset hound looking up at camera.Alas this New Year has been dismal from the start. My health issues are small potatoes; J. has provided the sought-for distractions, but not the kind I was hoping for.

On Christmas Eve, her elderly father was admitted to hospital three hours away. He is still in hospital and fighting a terrible infection.

How about this one? Just trying to distract you from your pain, honey.

Wild haired rescue dog--terrier typeOn top of that tremendous stress, J. is also suffering from a painful tooth infection that has spread to the surrounding bone. This is J., who has the highest pain threshold of anyone I know. She left hospital the day after abdominal surgery, and was completely off pain medication within a few days. It is heartbreaking to see her in so much agony that she is unable to function.

This one’s precious, don’t you think? 

Rescue puppy mixed breedThere are several other signs of the seriousness of this infection:

  1. J. has placed her kind and caring periodontist on speed dial.
  2. She is on her second round of antibiotics, which so far have not put a significant dent in her pain.
  3. J. actually allowed me to drive her home from the periodontist this morning. (We all know there are drivers in relationships and there are passengers. 99% of the time, I am the passenger.)
  4. Since eating has caused her such pain, J. has been on a mostly fluid diet for a few weeks now. She is hallucinating about the first hamburger she will eat once she can return to solid food.
  5. Because she is not eating, her nightly indulgence of a small bowl of potato chips has gone unfulfilled, and unfilled. A bag of chips has never lasted this long in our home, and you know I’m not the one dipping in to this sodium bomb.

So what if my bone marrow is misbehaving? I’ll sort that out soon enough. Right now what matters is that I be there to support J. It is not the distraction I might have hoped for–I still want that puppy–and hopefully it will end soon, for J.’s sake, but it will divert my attention from my own health, which is a good thing.

How about this one? Does she remind you of anyone?

Heeler cross rescue dogThis is a dramatic role reversal, as I’m sure you are aware. J. needs to be well so she can take care of me. We joke about this often, but it’s true. I am a naturally born caregiver with limited resources of late. Taking care of anyone for any length of time exhausts me.

Let’s all hope that J. is feeling much better soon, for her sake but also for mine. I’d hate for those chips to go wasted. And I’m thinking I may need her help over the next few weeks. She’ll have to get back behind the wheel the day I take that Ativan, for sure.

Resolutions are made to be broken

How are those resolutions going? Are you eating better? Are you down a size yet? Have you thrown out your money on that new gym membership? Well, if you’re struggling to maintain your commitment to yourself, you’re not alone.

My resolution to stop catastrophizing about my health lasted a total of 8 days. Then I went to the cancer centre for my regularly scheduled check in. I arrived with my resolution in tow, fully expecting an uneventful visit. I hadn’t noticed any new or different symptoms. Sure I’ve been napping most days, I’ve had the odd bruise, and I don’t quite feel myself, but that’s nothing new.

I knew I was in trouble when the lovely Dr. Blood Lite entered the room with an unusually grim look on his face. He pulled his chair in close to mine and asked how I’d been feeling. Then he said, “I’m worried that….” I can’t tell you how that sentence ended because, frankly, I was stunned by his lead in. A opening like “I’m worried that” is pretty high on the list of sentiments no cancer patient wants to hear.

It turns out my blood counts are dropping and the doctor is not sure why. I’m tired because I’m increasingly anemic and I’m bruising because my platelets continue to drop. Since my leukemia is well controlled, these changes likely reflect my wild card, polycythemia. I’ve had polycythemia for 18 years now, and in that time no brilliant medical researcher has devised a way to stop its advancing. The symptoms are manageable but the polycythemia train keeps moving, and I can’t jump off.

There are other possible explanations for my changing blood counts but this one needs to be investigated. The doctor suggested I reduce the nonessential chemotherapy that addresses my polycythemia symptoms since this drug could be responsible for my declining counts. No problem. If, after 6 weeks, reducing the meds is not the answer, the doctor will have to inspect my bone marrow for clues.

A long time ago, I wrote about the little minions who might one day start squatting in my marrow, building homes in the spaces needed to produce healthy blood cells. I’ve never invited them, but I have no means of kicking them out. Landlord-tenant bylaws do not apply. The only way to know whether the minions are squatting is to take a closer look.

J. knew that waiting six weeks to search for the minions would torture me. She asked whether I might have the bone marrow aspiration sooner so at least I’d know what I was–and we were–dealing with. For me, not knowing is much worse than knowing, even if the news is grim.

And so, dear readers, I blew my resolution completely yesterday. The doctor’s appropriately asking me about my advanced care plan didn’t help. (More on that another day.) I will now reinstate my resolution forthwith, knowing that in some situations, follow through can be challenging despite our best intentions. Next week, I will have no trouble following through since an Ativan will help me visit La La Land during the procedure.

I will keep you posted. I always do. If I can deal with this, so can you. And don’t forget, inside every anxious person is a brave person itching to get out.

Weiner dog in cape flying through air

This psychologist’s theories of fostering close relationships

Quote: Strangers are just friends waiting to happen. Rod McKuen

You may have thought I was finished talking about last Thursday’s fiasco, but of course I’m not. I spent the weekend reviewing what happened and how I resolved the situation. I’ve decided that, except for driving into a parking lot knee deep in slush, I would not change anything else. This conclusion has nothing to do with getting home in time for my client, nor sparing myself the cost of a tow truck.

I relied on three people that day, two of whom I have an established relationship with, and a third who is a friendly acquaintance. All came through with flying colours. I told them what I needed and they graciously jumped at the chance to help. Shouldn’t that be the way the world works?

I frankly expected Drs. Basset to help me if they could. Our friendship is well established and built on give and take, as is any good relationship. When I first got sick, I realized how extensive our incredible community of support is.

I don’t know Ms. Good Neighbour nearly as well as Drs. Basset. She’s told me her name before but it took last Thursday’s encounter for me to commit it to memory. I’ve never seen her outside the park (that’s often the way with these relationships) but I know she lives in the neighbourhood. She happened to be there when I needed help, and I sensed that she would come through. I asked, and she graciously took 20 or so minutes out of her day to do what she could.

While Ms. Good Neighbour was accepting my thanks (I believe I only thanked her 7 or 8 times over that 20 minutes), she wisely said, likely to shut me up, “If I were in your situation, wouldn’t you do the same for me?” Of course I would, and I have when asked, and sometimes even without asking. Easing another person’s load makes me feel needed, useful, trusted, even happy.

You all know that I’m not the sort to rely on others; in fact, I abhor having to do so. Leukemia has been an excellent teacher here, rendering me without a choice some days. Leukemia had nothing to do with last week’s incident, however, unless the illness has unknowingly interfered with my problem solving. (That’s a distinct possibility.) Let’s say there was a carryover effect from the needy person leukemia has made me some days: I needed help on Thursday because I did something stupid, so I asked for it.

If someone is needy all the time, that person may burn out the people around her. Recall the energy vampire described in an earlier post. But I believe it is possible to be needy on occasion without breeding resentment and friendship fatigue. According to my newly developed theory of human relationships, Neediness + Reciprocity = True Friendship.

I haven’t been back to the park since that day–I’m a little car shy–but when I do, I’m hoping I’ll bump into Ms. Good Neighbour. Now that I know her name, this friendship may take off, especially once she tastes my baked goods.

Which leads to my second theory of human relationships: Appreciation x Unsolicited Baked Goods = Undying Devotion. You know it’s true.