Cancer

10. Doom Piles & Down Dog

I think it’s safe to say that many (most?) of us, regardless of age, family situation, or profession, are feeling burned-out. The last two years have been exhausting, and while life seems to be heading back toward “normal,” things just feel off. Some things will just never be what they were, and every day, there’s some new reason to worry, whether it’s real, overblown, or imagined: droughts, wars, gas prices, food prices, vaccine mandates, government overreach, Kanye…

It’s easy to wish someone would just fix everything for us. However, at work and at home, I’ve come to realize that no one can fix anything for you without your cooperation. Trust me, I’ve tried. I’ve listened to complaints and offered the exact response I was told would solve everything, only to be told it’s all wrong. (And that was just 6th grade math homework.) I’ve listened to concerns, wracking my brain for solutions and coming up empty–and feeling that I’ve failed my colleagues. Daily. As a person who is solution-oriented, goal-oriented, a planner and a worrier, a wannabe leader, it’s demoralizing. And of course, as one does when one is the independent, fix-it type, I began to put all the blame on myself. I’m not good enough, I’m not trying hard enough, why do I mess everything up… I wanted to just give up. And then…then I noticed it was coming out at my daughters. Just the way they say kids hold it together in public and unleash on their parents at home because it’s their safe place, I saw that I was doing the same.

And I knew I had to do something different.

I had an oncology appointment in December where we discussed notes on some sleep difficulties I’ve had ever since chemo. I’m participating in a study through UB, although not finding a solution. I was constantly waking up with hot flashes, caused by the medication I now take daily as part of my treatment. So the doctor suggested a medication that can be really effective, and I was on board immediately. Then, she asked me about the notes regarding mood and a suggestion by the nurse overseeing the study that perhaps I could have some anxiety. I bristled–but chose honesty–and told her about how angry I’d been at myself and how easily set off, especially at home. She gently explained that the medication she suggested for hot flashes is actually an antidepressant that works well on anxiety. Instantly, I didn’t want it anymore. But I stopped myself. I told her what I was thinking and in expressing it, realized I was willing to take medication for a physical issue, but the same medication somehow became unacceptable when targeting a mental/emotional one. In a (rare) moment of emotional maturity, I admitted that seemed really, really stupid, and I took the prescription.

My very wise doctor knows, though, that medication is only one tool and, taking advantage of my fleeting moment of receptivity, she also offered a referral to a therapist who specializes in work with cancer patients. “But I’m not a cancer patient, not anymore,” I responded. She looked at me and said, “Kerry. You will always be a cancer patient. And I don’t think you ever processed what you’ve been through.” Ouch. Yep. So I took the number and went on my way.

I really didn’t want to call, but I couldn’t solve this by myself. The medication did make an immediate difference. The hot flashes were gone, and my fuse grew longer. But I knew she was right, so I called and I started seeing a psychiatrist. There. I said it. Some friends have recently talked about and posted about taking care of their mental health, noting that they hoped it would encourage more people to do the same. And it worked on me, ladies, so thank you. I have a lot to learn, but it’s helping to get an outside perspective.

With my doctor’s guidance, I discovered was that I was lacking a sense of purpose and taking too much responsibility for things that aren’t mine. I learned about how my problems with focus are connected to feelings of burnout, and now that I’ve learned about “doom piles,” WOW. I see myself a lot more clearly. Have I fixed everything? Absolutely not, but you can’t fix anything when you don’t see the problem. It’s a humbling experience for someone like me, but I am a person who believes that hard work and discipline can create change, and now I have a map to get where I want to be, and even to enjoy the messy process of getting there.

I started to think about how I could make changes in myself, and I wondered if there was a way to offer some kind of service to others in an effort to have some small influence on the world around me. I started offering yoga classes, made possible in part by my father and sister generously allowing me to use a space above their office. I’ve enjoyed creating sets and playlists and decorating the space. Even more rewarding is seeing the same people week after week, having them respond eagerly to new offerings, seeing them progress (and myself, too), laughing and trying new things together, even when we might look silly or fall out of a balance pose, or take a modification, or say, “Nope, not trying that one.” I think (and hope they agree) it’s a fun place to be, a treat for the body and soul, and I’m so grateful for the connections I’m building there, in my community.

My other idea was to start a little book club for people in my school. It’s a small and diverse group, and we’ve only met once so far, but I’m so happy that, when presented with maybe an odd little invitation to read a book with me and connect outside of school, several people thought to themselves, “Yes. I want in on that.” In fact, one colleague, at the end of our first meeting said, “I just want to say, I’m proud of you for doing this. It isn’t easy to put yourself out there.” Aside from the fact that of course, everyone loves to have someone say they’re proud of you, even better for me was this little spark of hope that maybe other people will be encouraged to do the same. Maybe it’s not a book club, just some small thing to bring people together as humans rather than job titles, to connect rather than commiserate. Most of all, it’s the idea that it doesn’t have to fix everything or make everyone happy (like either is even possible); it just needs to be one little step in the right direction.

All of this is to say, if you’re unhappy with how things are going or the culture of wherever you are, don’t wait for someone else to fix it for you. What are you doing about it? You don’t need the answer to make some small change that could inspire others to do the same. Even just offering encouragement to another’s endeavor, or joining in sometimes, can help. And if it doesn’t, no matter. It doesn’t detract from you or your attempts to make your world a little brighter, even if it’s only for yourself. A happier you does a lot of good for everyone, too, so start small.

And feel free, not if but when I appear to have forgotten this very sage wisdom, to remind me of it: “Psst, remember that blog post you wrote? Maybe reread it?” I’ll need it. I’m a lot of things, not all good, but at the core, I’m just plain human and I’m not fixed, but I’m working my way toward doing better.

7. A Lumpy Memory

A year ago today, I woke up early to do some work. We were frantically gathering and uploading information to our website for parents and students, and I had an overwhelming number of emails to read and extract attachments from. I was frustrated by being asked so many questions that I believed I’d already explained in detail and by the number of items I received that were formatted or labeled in ways that required multiple extra steps on my end. I was already tired and hangry when my dad picked me up, having been unable to eat or drink anything since midnight.

Dad drove me to the doctor’s office, where I continued to work from my phone in the waiting room while he waited in the car (because, COVID). Eventually, I was called back to be wrangled into a mammogram machine and have a wire inserted deep into my left breast to mark for the surgeon the exact area to remove. It was not pleasant. It felt exactly the way you would expect it to feel if someone shoved a wire a couple inches into your skin and tissue, and I had to stay very still to ensure that the placement was accurate. Then the long end of the wire was taped to my skin, and I was wrapped up and sent on my way to the hospital for surgery.

My dad was able to accompany me in to the waiting room until I was processed and admitted, and then he went back to wait in the car while I was prepped for surgery. It involved a lot more waiting, during which time I continued to answer emails, until finally the anesthesiologist offered me a “cocktail,” and I wisely surrendered my phone, along with all of my clothes and belongings to be taken out to my dad’s car, since there were no lockers being used for patients because of COVID. The hospital staff tried to make me comfortable and offered me TV and music while I waited, but my to-do list was swirling in my head, and I really just wanted to get the surgery over with so I could get back to it. The knowledge that my already-full inbox was, at that moment, collecting even more messages was overwhelming, and although it’s not in my usual bag of tricks, I welcomed whatever medication it was that made me doze on and off while I waited.

At some point, my surgeon appeared, masked and face-shielded to the point of being unrecognizable, but as she was pregnant and we were in the early weeks of COVID anxiety, I was grateful she was willing to be at the hospital at all, knowing there was already a whole floor dedicated to COVID patients. She signed my surgical site and we chatted about what exactly she was going to do. Now that I think of it, this was probably pre-“cocktail”… It’s fuzzy. I remember just feeling so much admiration for her, being so attentive and warm and kind. (Okay, reading that makes me think I’d already had the drugs…) I remember being taken to the OR, and I remember being told to count down from 10, but I think I may have made it to 8.

I woke up in recovery feeling groggy but not nauseous, and the nurses did their best to make me comfortable while they called my dad to bring my belongings back inside so I could get dressed and discharged. I was given my post-operative instructions, some ginger ale and crackers, and wheeled out to the car. We stopped at the pharmacy on the way home so I would have the pain medication I was prescribed, but all I wanted was to get to my bed and sleep. I had to prop my arm up to protect the incision a little, but I slept for a few hours and woke up hungry but otherwise fine. After I ate, I sat down at my computer again and waded through more emails and attachments until I was as caught up as anyone was going to be three weeks into COVID lockdown.

And then the next day, I got up and worked. The beauty of it for me was that, since everyone was working from home anyway, I was able take just the one day “off” and be right back at it the next. The girls were with their dad, so in some ways I was more productive then, without the calls for endless snacks and meals and refereeing. I wasn’t in much pain, so I didn’t take any of the pain meds, just ibuprofen to help with the swelling. Instead, I opted for ice now and then, along with a couple of short naps, and by the time the girls returned the next day, I was eager to seem them and completely recovered from the anesthesia. They were just the right height, though, to give me a good jolt of pain when they hugged me, but as any mom will tell you, it was worth it, and they were very helpful to me in the next few days, when I wasn’t able to lift anything and my range of motion was really limited.

I’m not writing this to pretend I’m tougher than anyone, or to garner sympathy, or anything like that. It was my choice not to tell almost anyone that I was even having surgery, so I wasn’t expecting any special treatment at the time, nor would I have wanted it. I was angry that I needed it in the first place, but I felt like since there wasn’t much I could do about it, I’d just power through like always, and since *everyone* was having an awful time, there was no point in whining. In the end, I’m glad. Later, in the summer, when I did become the object of many kind gestures and sympathy, I was already worn out and a little resigned, so I was ready to accept those kindnesses. But on April 6, 2020, I was just annoyed.

And now, a year later, I have a fading vertical scar and some residual swelling and soreness, but none of that kept me from working out, enjoying a (terribly played but sunny) round of golf with my brother-in-law, a couple drinks with a friend, and dinner and laughs with my little beasties today. I’m lucky. I’m on the other side of it, even while others are struggling. For me, the biggest lesson of that day was the recognition that on any given day, I have no idea what someone else is going through, so I need to extend some grace to them–and to myself.

Happy Lump-iversary to me.

(Shoot, if I’d been thinking, I’d have served chicken breasts instead of drumsticks for dinner.)

6. On Recovery

Hey there, it’s been a minute. My last post was from the end of August, while I was still in chemotherapy. Since then, I’ve finished that with very little difficulty, undergone my whole course of radiation, and am now receiving infusions until June while also taking medication for the next five or ten years. Tomorrow, I’m even getting my first “haircut,” which is really just some cleanup over my ears and on the back of my neck, but considering I was still almost bald at Halloween, I’d say it’s going well.

I gained almost ten pounds on chemotherapy, a combination of drinking pop to settle my stomach and eating whatever foods I could tolerate. I lost a huge portion of my fitness, even though I did more barre, yoga, and rowing than I expected to be able to. I can barely maintain a plank for even thirty seconds, I can’t do a single push-up, and even light rowing gets me winded, but I can rebuild from here. I’m glad to be here; I know I’m lucky. I’m glad my work clothes still fit, having spent the better part of the last nine months in my comfies. I’ve taken more naps than I thought a mom of two possibly could, made possible in large part by Minecraft and Roblox and YouTube. (And since I can no longer sleep more than a couple hours at a stretch, that will continue.)

Just this week I’ve noticed that the last discolorations from radiation have almost completely washed away–with the exception of my three tiny tattooed dots to help align the machine in exactly the same way each of my twenty visits. I can finally hug my girls tight without (much) flinching, as most of the tenderness is gone. And although I still have an obvious-to-me lump in my armpit where fluid has not dissipated yet, for all intents and purposes, I’m physically back to “normal”–or what passes for normal for me.

In some ways, this next part will be the hardest. When I was obviously in treatment, sick, wiped out, it was easier to give myself a little grace, to let go of some of what I “should” do or be, and to just focus on the next small step–the next day, the next round, the next week’s childcare arrangements, the next remote-school assignments to argue about with the girls. Now, it’s like my excuses are gone. 2021 is here, and cancer is so 2020. Time to set it aside and put myself back together.

And yet.

I still have these appointments, the infusions, the daily medication reminding me that although I’ve cut it out of me, killed my own healthy cells to eliminate the bad ones, medicated and irradiated it, it was not without lasting effects to my health, to my well-being, and to my identity.

Both Molly and Stella have asked me, at different times, “Is it gone?” “Are you better now?” “Did you beat it?” I believe so, but then I guess I was never really worried about that. I was lucky: it was caught early, and I was only as sick as the “cures” made me. I made it through every treatment there was to throw at it, and the chance of reoccurrence is minute. What I hated, and still hate, is the feeling that I can’t keep up, that I’m taking it too easy, that I’m not doing my job well enough or showing up the way I should for people who have given me more than my share of understanding for all of my shortfalls when I was sick.

So at the end of the day, what I need to recover from has nothing to do with cancer and everything to do with how mean I have been to myself all along, never giving myself the break I would easily give to another, always thinking the worst of myself when there a thousand things more kind that I could think. So yes, I’ll lose those ten pounds, I’ll regain my fitness and my energy, and my ability to slam through obstacles even when I’m not sleeping, even when there is “too much to do.” But what I am learning to leave behind are my old thoughts and limitations, my tendency to believe every criticism and discount every compliment.

Yeah, cancer is so 2020. But so are self-doubt, limitations, “shoulds,” and thoughts that don’t serve me in creating the life I want for myself and for my girls. In 2021, I recover. And then…well, I can’t wait to see what I build from there.

January 5, 2021

5. Guilt

How I’ve let some go, and what’s still got hold of me

I went for my fourth (of six) round of chemotherapy today. My blood counts were good enough to proceed, but I was surprised to see how they have fallen. I really felt like in the last few days, I was back to 100%, just out of shape, but the numbers say otherwise. Anyway, I’m more than halfway now, I’ve had help when I’ve needed it and sometimes even when I didn’t, and I’m doing okay. It’s been a lot more unpredictable than I had imagined it would be–sometimes I wake up feeling fine but suddenly crash; other times I start out rough and then find a burst of energy. How I feel one day seems to have little to do with how I feel the day before or after, and I’m not awesome with unpredictability outside of work, where unpredictability is a given, especially now.

But I’ve got a Roomba now. (Actually, it’s a Goovi, but if I’d called it by its name, you’d be Googling it now.) So far “Monk” (named for the TV show character–Google that instead) has gotten a TON of cat hair, Cheerios, apple stems and seeds, a few beads, band-aids, and a mood ring Stella lost almost a year ago. It’s amazing how such a small thing can make such a big difference. I’m sure it doesn’t do the same job as a regular vacuum, but it sure as hell cleans better than good intentions do, so it’s a win. Guilt gone.

I’ve also been ordering from a local restaurant, Central House, weekly ever since they started their service. They haven’t reopened, but they sell bags of produce, casseroles and meals in 9-inch pans, salads, soups. It’s food I feel good about serving when I’m too tired to cook. I’ve also received gift cards to local restaurants; Stella has developed a real love of Marco’s subs, and Molly considers their wings the gold standard. And I love the California chicken pizza at John & Mary’s, too. I also kept my cropshare at Hen-Hawk, so every week I get a bag of fresh produce for us to enjoy, and sometimes I’ll splurge on the delicious treats they also sell at the stand. I’ve received trays and platters of food, jars of sauce, a giant coffee cake…So the point is, we’re well-fed here. I don’t cook every day anymore, but I don’t feel one bit guilty about it, either.

People have been incredibly giving and sweet and supportive–far beyond what I expected. I’ve received so many cards, scarves, hats, gift cards, lotions, cups/mugs, a shirt, jewelry, coloring books (sweary ones!), inspirational books, blankets, socks, and more supportive texts, emails, and messages than I can count. Along with feeling so very grateful, I often feel guilty about all of it. I’ll make a full recovery–I have never had reason to doubt that. It’s not the case for everyone. I guess that’s what you call survivor’s guilt. (Leave it to me to experience that before I’m even done with treatment. 🙄) However, I remain extremely grateful to have so many wonderful people in my life and community.

Speaking of community, someday my girls will realize how lucky they are to grow up in a neighborhood like this one. Ever since the weather turned decent this spring, they have roamed the neighborhood with the other kids and without much worry on my part, or the other parents’ parts (I asked). We all worked mainly from home during the spring and early summer, so the kids have been allowed to hop from yard to yard, pool to pool, a pile of bikes and scooters and helmets in a driveway indicating where best to find them. One family got a new pool this summer, so the novelty of ours wore off after that, and the girls have spent a lot of time there and on their bigger playground. I’ve felt guilty allowing it, but I’ve told my friend to send them home when they get to be too much, and as she is a teacher, I know she can set that boundary and deliver it kindly.

I’ve taken a bunch of naps while the beasties play outdoors, or other days, while they watch too much YouTube or play Roblox on their tablets. I feel guilty leaving them to themselves or to the other neighborhood parents, but I remember plenty of days growing up on Dartmouth Ave in Buffalo (until fourth grade) when we ran the neighborhood just like that. And it was a great way to grow up. Less guilt. I also remember summers where my sisters and I literally watched the same movies every day. They’ll correct me if I’m wrong, but I think it was Mary Poppins and Bedknobs and Broomsticks. Was there another? Anyway, we turned out fine(ish). Less guilt. Plus, when my girls play online games, they often call their cousins or friends, and it’s actually a lot of fun listening to them play together. Even less guilt.

Both of my kids’ grandmas have taken them overnight to give me some more solid rest, too. As a kid, I often went to stay with my grandparents for a week or longer in the summer, and I loved it. I love it even more now that they are gone. We didn’t even go a lot of places, though we usually went shopping and out to lunch, took long walks in the woods, picked TONS of berries, and once we even went to Enchanted Forest. Just sitting around watching TV or playing games or doing whatever craft I was into that year–cross-stitch or paint by number or latch hook, as I recall–just doing them at their house was somehow different and special. So I’m grateful my girls get to see their grandparents so much more often and no, I don’t feel guilty about that, although I don’t often accomplish much while they are gone, but I guess that’s the point.

Anyway, we’ve all survived the spring and summer. (Well, some of my plants have bit it early because I forget to water them. And my lawn is brown. So. Very. Brown.) But the kids are good, even playing field hockey once a week, which comes with its own concerns (but that’s another post), the cat is good, though she still hates Monk, and I’m okay. I continue to be grateful that, in its own way, the timing of all of this has worked in my favor but that, too, brings guilt when I see how the pandemic and resulting closures have hurt so many. But I remind myself, it’s not like I’m profiting here; it just doesn’t suck having to deal with cancer as badly as it may have in a different kind of year. So yeah, less guilt.

I’ll have to write another post analyzing myself and all this guilt (and don’t get me started on the back to school stuff, ugh), but I know I’m not alone. That helps. Less guilt. Thanks for reading, and thanks again for all of your support; it is so very appreciated.

K

2. In Case You Missed It…

An Update from the Book of Face 6/23/2020

This isn’t news to people who know me IRL and follow me on FB, but if you don’t, it explains “The Hair Saga” photo album, for starters…

The real reason I cut my hair. I wasn’t brave; it was just inevitable. [Warning: Really long and kind of a buzzkill. Feel free to skip entirely, since I realize now that I really wrote this for myself anyway.]

Thanks, everyone, for all the nice things you had to say about my new hair. I do like it, but it doesn’t feel like me just yet. It’s strange how something as basic as hair can be such a big deal, but my long hair has been part of me for so long that I don’t feel myself without it. And the truth is that if it weren’t for my hair and how noticeable it is, I wouldn’t even share this. But living life means being uncomfortable at times, so here goes.

I was planning to just sneak by and maybe oh, around October, toss out a “hey, crazy quarantine story for ya” kind of post. But let’s back up. So remember March? I know, some of you are still recovering. That week began with losing an hour to Daylight Saving Time, went straight into a full moon, and ended with Friday the 13th and ultimately the end of the in-person school year. I’m trying to explain why I didn’t tell you sooner. Stuff was rough, man. There was no TP and we were worried about our health care workers and having enough food even, and then suddenly everything went online overnight and we were hoping our students were safe and the school kitchens and bus drivers saved the day right there. So on Tuesday, March 10 we were all tired. Like “It’s March” kind of tired. Sick of everyone’s crap, state testing coming, normal stuff. So on that day, I had my regular mammo, which became “Hey we need you to stay and have a biopsy,” but I wasn’t worried. It’s happened before, and it’s always fine. So I did it and went to work later than planned, but I was there. (I think you see where this is headed.)

By Thursday, sports and events across the state and country had begun to be canceled. Our 8th grade trip, which I complain about but also really love, was canceled. There was a fight, and of course a Snapchat/TikTok/phone thing, and work was busy. In the middle of all of it, the doctor’s office called and I really expected them to say, “All good, let’s just schedule for six months to check.” Instead, they told me the biopsy revealed a malignancy–a very treatable type, but with everything closing down it was important to schedule me immediately for an MRI, genetic testing, and a surgical consult. I was going to miss three days of work the next week, so after I told my family, now I had to tell the people who would be left picking up my slack, each of whom already had a ton to deal with but whom I knew would cover me nonetheless. I work with amazing people. I dreaded adding to stress by being out or making people wonder if I was up to working, but “luckily” for me, I didn’t have to tell anyone else because over the weekend, we closed. I was able to get to my appointments and work from home without saying much to anyone else. I know it got to me a little because a couple of my more direct friends asked me, “Yo, what’s your problem?” and although I wanted to hide it, I’m not a liar. It was kind of a relief to have a couple people know, too.

Genetic testing came back good. I’m most grateful for that. No elevated risk for my girls, my sisters, their kids. I didn’t really tell the girls much because I wasn’t sure exactly what I was in for, although I’ve learned I really never know that anyway. It seemed really simple. Surgery, maybe some radiation, very contained. I had a lumpectomy and then, when the pathology revealed it was not *quite* so contained, I had another surgery to remove and test lymph nodes. I still thought I was skating through to radiation without anyone even knowing, but no such luck. I mean, in the end, it was my choice. I could have refused chemo, but I weighed it out: my discomfort for now, during a summer when everything is closed and canceled, balanced against 40+ more years of healthy life. Maybe I would be fine, but there was a bigger chance of recurrence. It’s a fast and aggressive type, but extremely treatable right now; if it makes its way elsewhere, not so much, and I’d have to live not knowing. If there is one thing that most of you know about me, it’s that I can take a lot of pain and discomfort and hurt. But uncertainty…I’m not good at that. So after internet-stalking my doctor and reading his published papers, and lots of research and reminding myself that my feelings or someone’s essential oils and plant-based diet were no match for real science (do NOT @ me; I am still feisty), I went ahead and started chemo last Thursday. So my hair will fall out; cutting it just makes it less messy and less traumatic.

Thank you to Peggy for the little keepsake bags so the girls could each have braid of long hair. Right now, my hair is all they are worried about, and I take that as a sign I’ve done something right if their biggest concern is “How will I recognize you without your bun?” and “What if someone makes fun of you?” They are sweet and very good helpers, and still being sassy, so I know life is normal for them, and that makes me glad. I have plenty of help from lots of people, I have excellent medical care, I have my sense of humor and a lot of books and a tolerance for messiness. I’m good. Turns out, sometimes thoughts and prayers really are the only thing left to do.

If you see me out doing yardwork, remember I enjoy it and have all the help I need. So if I’m doing it, just smile and be glad for me, that I’m feeling up to it. The thing I want most through all of this is to just be normal (as though I ever was). I’ll ask for help when I need it–I promise.

Anyway, long story, and more to come, I’m sure. I’ll be fine, and I appreciate all of you. Thanks for reading.