cooking, Covid-19, Family, Health, renovation, uncertainty

Is it OCD, ADD, or DT?

MONDAY: I was texting with a friend who asked, “How’s your Monday been?” and I thought to myself, I could respond with an upbeat “Pretty good” or “Ok” or “Good, you?” or just cut to the chase. I chose the latter: “The damn cat woke me up last night with his throwing up.”

Louie had a long walk earlier in the yard with the boys, walks more about munching grass than walking on it. He over-indulged again, his system expelling the remarkably intact blades at a most inconvenient 2:45 am hour. The horrible sound of a cat bellowing as his body expands and contracts instantly wakes me and no doubt my husband too, yet we both lay there just like we used to with nighttime baby cries, waiting it out to see who’s going to get up. I rose quickly hoping to avoid it underfoot, whispering the mantra in my mind, “Please don’t go on the rug, please don’t go on the rug.” Thankfully the cat found a spot in the hall on the heart pine floor in plain sight which I could clean up before someone walked on it or the dog took care of it, the more vulgar of the two possibilities. I climbed back into bed trying to convince my mind that I hadn’t just disrupted our peaceful sleep when Louie continued droning for some two hours until he either gave up or I slipped back into sleep and lost track. Can’t determine how many hours I got, but the sum total was crappy sleep, which sends one’s brain, what’s left of it, into hopeless places.

Now up, I tried doubling up on coffee thinking I could snap out of it and feel awake, but that either works well and you’re wired much of the day accomplishing loads or it has the opposite effect, like melatonin got stirred in. I got the latter. Scrolling social media didn’t help support any semblance of a new-day can-do cheerful mood. More articles shared about college openings and mask wearing. It’s worrisome. Like many others, my son’s college is not requiring masks worn in classrooms despite professors rallying together revolting, some 700 signing a letter. Will our governor budge and put in this mandate that will trickle down to the University System and the individual schools? How long is it going to take? Some states have moved their mask wearing needle from “optional” to “suggested.” I guess we should be happy for small victories, but how about we hop over the “suggested” stepping stone and just land on “required?” Seems with this pandemic we’re going to have to get there anyway, so why the snail’s pace which allows so much sickness to take hold and pushes hospitals beyond their limits?

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Sad stick.

All this together time and some days stupid stuff grates on my nerves. I went to butter my toast and there was this. Who does this? My mother never let us maul our butter. We had to cut individual pats, put them on our plates and then it was our choice how to apply it to things more complicated than toast, like corn for instance: horizontally rotate the cob with buttered knife overhead or spear the butter and apply it to a diagonally rotating cob, hoping each kernel gets some before it melts onto the plate. I wanted us to be that family that rolled our corn onto a brand spankin’ new stick of butter, the contented cob twirling like a pig reveling in mud, and then watch the stick soften and mold into a sway back. But we never did it that way which is why it’s now unsettling to find diagonal hurried jabs disfiguring what was a perfectly fine stick of butter.

And the eggs too. No one’s fault here, but on a day when I’ve gotten little sleep, the carton needs to be symmetrically organized or else I’m finding my brain resorts to arrive at a workable configuration, and when no possibility presents, a plan for that surplus egg.

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Ahhh, we’ve got balance.
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Which egg will be the extra?

 

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Sexy planks await.

It may seem like we’re standing still but things are moving. The long-awaited lumber delivery happened so our porch renovation is closer still. After weeks, make that months of delay, Carolina Lumber came through and it made me so happy I could sing! Not sure if it all actually came from Carolina, but I went there in my mind. Enormous structural beams wait for when the larger-than-what-was-earlier-expected crew arrives to hoist them into place. Maybe even as soon as tomorrow!

The porch is going to be another place to go, delivering all the benefits of outside – sights, sounds and smells – with all the comforts of inside – no mosquitos, roof overhead, adjacent to the kitchen and bath. Not to mention the talented architect on-site who’s beautifully drawn it all and will ensure it gets built to its glorious specifications. The pets also will be in heaven.

 

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Evan’s bench has a reclaimed wood top, leftovers from our renovated garden shed.

More lumber, new and reclaimed, put to good use. May I present the bench that Evan made (with Joe’s design help). Sturdy for plants or people, and as it now stands, perfectly positioned for social distancing on our porch too.

TUESDAY: Some good news! As I’d wished for yesterday, mask wearing will now be required on our state’s college campuses. Seems jumping to “required” didn’t take as long as I thought. A seemingly simple step which will afford far better outcomes for students and faculty returning to campus. While I’m at it, I wish for good news in November’s election. Just putting it out there.

IMG_9902These days at home together may be different than what we’re used to, but they offer the same cast of characters and rather predictable if not comical commentary. Take tonight for instance. Joe walks in the kitchen as NBC Nightly News is interviewing an adjacent state to the south’s governor, and all he can do is lean into the TV, get the gist of the story, utter “douche bag” and walk away. This is where we are.

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Not picking up.

At least twice a week timed late in the afternoon, I reach for the phone and nearly pick up until – whoa! – don’t touch that handset! Please DT, don’t call me.

WEDNESDAY: Ben is busy making garments and new patterns arrive, and I can hear the hum of the sewing machine churning out a jacket, a turtleneck for his girlfriend or in the case of today, pants. Evan has been helping Joe make railings for the new screened porch and both boys are learning more about woodworking, captivated by possibilities. They’ve each dealt with these strange times with grace and patience and resilience and despite not being able to stray too far from this home we’re quarantined inside, they’ve managed to fill their days rotating through simple pastimes – biking, frisbee, wiffle ball – or taking a drive to the mountains, just the two of them.

Joe returned yesterday from the store, as if just in from a hunt, hauling the kill stuffed in white Publix bags over his shoulder – pork ribs and ground beef (and ground turkey thrown in for my sake). Somehow, we managed to rearrange the fridge and freezer again to fit it all – a favorable problem in these times.

A simple burger normally eaten alone for dinner or with some chips or carrots now needs to be elevated – maybe baked beans on the side, green salad with veggies and homemade dressing, and what about for dessert? We are all relying on something to look forward to, each equally vested in turning these monochromatic evenings into something colorful, and food is the logical start. The days ramp up to dinnertime and you hope it’s all you hoped for and then you digest and clean up and begin sketching out the next sit down.

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Patterns and toes.

At least once a week there’s an Amazon Prime truck parked in front of our house. I run to the door wondering, have my vitamins arrived? Or maybe its that cord I lost and reordered for my external hard drive? Ben rushes to the door too, considering his own package, has my zipper come? He’s been sewing and ordering fabrics and now is waiting on an Etsy zipper to complete a jacket he’s begun. It’s as if Santa’s sleigh is out front and those few minutes he spends sorting out packages nearly kills us as we wait and wonder. Surely, we were good this year, good enough for one of these to be ours?

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Divine especially with salted butter and honey.

I’ve stayed busy baking, perfecting various favorites of mine, even taste testing on a few friends. Maybe this little hobby will grow, and I can start another little business. Obviously we must eat if we’re going to live, but if we can infuse the experience with memorable taste and texture and depth and light, I think we’ve accomplished something important. The days can be hard, but the meals don’t have to be. They offer chances to unwind and savor something satisfying. Might as well make them extraordinary. I’m working on it.

Today at least has gotten more interesting. As I sat on my bed to write, I noticed my vision increasingly strange, my lens now a watery veil, with bubbly visual noise in the corners. This being a pandemic coupled with my recent health “thing,” I was on the phone with my oncologist and eye doctor immediately. Seems I had an ocular migraine. They tell me they’re not cause for worry, yet their origins aren’t completely understood. I had one ten years ago during a particularly stressful event, details I won’t bore you with. So is it stress? Very likely the culprit. I know discord, tumult, or too much uncertainty make me uncomfortable. I was that girl when overhearing her parents argue who would make them kiss and make up. They used to make my siblings and me do that, so I figured why not them too? Besides, I hated hearing them argue. Ultimately, they’d oblige and offer up a disgruntled peck on the cheek at best, and I always stood my ground until they did. They would go on to divorce. Damn.

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Normally a nearby busy park in summer, this scene typifies life now.

Today we’ve got the perfect storm on our hands with all that’s going on in the world and in our own homes. Even though it changes by the hour, consistently the news hasn’t been good. I feel scared leaving my bubble, and so like others, I rarely do. I’ve heard friends announce before that they can’t watch the news, but I’ve been fine with it on all these many years. However these days I think it is finally getting to me and manifesting on a physical level, as with today’s migraine. I realize good nutrition, exercise and rest have absolutely got to remain in place but a little more fun needs to find its way in, too. On the peace-of-mind upside, as with colleges and universities, Atlanta will soon have a required mask mandate in place. That’s a start.

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Nice to sit next to someone for a change. Robert Frost with me in Agnes Scott’s fountain courtyard.

Despite its continued efforts, my brain can’t wrap itself around the layer upon layer of difficulties in our world that you can never fully unwrap. It almost seems shallow tackling insignificant household minutiae when there’s this enormous elephant in the room trying with all its might to get out, and there’s absolutely nothing you can do. Or a better analogy would be there’s a massive tornado, with a tail the likes of which you’ve never seen, and it’s coming to a neighborhood near you. Except when? Where? Have you battened down the hatches sufficiently? There is no perfect solution. Except there is that life-saving trifecta, our own part we each can and should do: Wear a mask, social distance, wash your hands.

Finally, I asked my family to sum up in three words what living together during this pandemic has been like, and our different perspectives are interesting:

Susan: Togetherness, nourishing, unpredictable

Evan: Uncertainty, boredom, projects

Ben: Free time, productivity, relaxation

Joe: Surreal, enjoyable, virtual

 

(Stealing from Garrison Keillor)… Be well and keep in touch.

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breast cancer, Encouragement, Health, hope

Cancer Close Out

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Joe with me and the cat resting after my surgery. No one focuses much on the partner of the patient, but it’s no picnic for them either. He’s been a rock.

I’ve completed treatment. The honeymoon is over. That warm swirl of homemade delivered soups, little notes and calls, and attentive doctors and nurses propping up pillows, encouraging me that I’m doing great is now behind me. Lumpectomy done. Check. Chemo over. Check. Radiation complete. Check. Now what?

I’ve had people ask me that same question. They look at me now as if I have some answers because, well, you know, I must be an expert on cancer. Wow I said it twice, did you notice? Once in the title and once in the text.  Maybe I’ve reached that stage of grief they call acceptance? I hate saying the word because I don’t feel like a member of that club and the word wreaks of death looming, so it must be  w h i s p e r e d  or typed in italics. My thinking has been since it was enough stress to have had it, must I now say the word too? I’ve found there are plenty of ways to circumvent saying it.

Have you been seeing all those commercials for cancer treatment on TV? Maybe you don’t notice them, but there’s a preponderance. A soft female voice delivers the message for things like Ibrance, that promises you can now live in the moment even if you have metastatic breast cancer. Thankfully I didn’t have that type; mine was isolated to one tumor in one breast. But still, these ads call out to you, stop you in your tracks, flood you back and you always remember. Then come the warnings, also whispered: Ibrance has been found to shrink tumors in over half of patients. Ibrance can cause low white counts and serious infections that can lead to death. Be in your moment. Ask your doctor about Ibrance.

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This combo – red peppers, white and sweet potatoes and red onions – which my sister got me started on is so easy and makes me happy. My body too.

I’m afraid I don’t have any insights into why this happened to me, though in many respects I’m not completely surprised it did. My stress had been escalating – the same crap, the familiar loop that runs round and round in our head that we can hyper focus on but know we shouldn’t  – and I’d been rather slack about healthy eating and drinking, and still without any meaningful sustained exercise regimen. The perfect storm where something had to give, and part of me is glad it did. You can’t sustain that kind of adrenaline indefinitely.

In all my fifty-six years, I’ve known just two people who’ve had this. One was a neighbor in an apartment complex I lived in in my early 20s and the other, a colleague of my husband’s. In the case of my neighbor, I don’t recall her specific situation, and only now do I realize that each person’s unique experience varies considerably. You can have cells that leave your breast and travel other places via your lymph nodes, bringing more unpredictability as to whether they can be wiped out, or you can have more destructive kinds, such as triple negative, a highly aggressive variety which can be hard to treat because its food source is so unclear. I don’t know the kind my neighbor had. I do know she was a smoker. Did that weigh in? There is no telling. I remember taking great pleasure when ordering her flowers after she got the all clear. I also remember her dying less than two years later.

I was heartbroken, of course, but dumbfounded too – didn’t they say she was cancer free? Evidently, it’s not that simple and clean cut. Perhaps hers seeped into her lymphatic system destroying other organs or was more aggressive from the get-go than doctors initially thought. I will never know, but I felt so let down, so gypped, having been so overjoyed, as she was, that it was finally over. It doesn’t feel good, this unusual, premature and unfortunate ending. Like being a bridesmaid in a wedding where the couple later divorces, but of course worse. The other woman who had “it” best I can tell has resumed a fully normal and healthy life, thankfully. I don’t know her well and so am not inclined to ask about her story. I’m not sure she even knows mine. The important take away is after all this, if you are thriving, then you are thriving.

You can’t sustain that kind of adrenaline indefinitely.

I don’t have a crystal ball for my own future, but at least I know more than I once did. That whispered term that I must type in italics, “metastatic breast cancer”, refers to cancer which started in your breast and later (typically within five years) pops up somewhere else – a game of Whac-A-Mole gone terribly wrong. After some women complete their treatment and go about ringing bells and running victory laps around infusion chairs, sometimes when they least expect it, it returns. When it does, I’m told it’s not as likely to show up in that same breast or even in the other one. The more typical scenario is it shows up elsewhere, such as in your liver or bones, which is called a “distant” recurrence, far from the initial source (breast). Unfortunately, even if yours was a low stage to begin with (mine was Stage 2), all distant recurrences appear as Stage 4 and are called metastatic because the cancer has metastasized, left the breast and spread to other organs. Many women die from this, yet some can live with it, but they must be all-the-more vigilant with extra therapies and medications and go forth with the real fear that they are never quite done. But are any of us who’ve had breast cancer? Can we ever lose the brand that’s stamped on us in our own minds and in others’?

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With a diagnosis like this come supplements. Lots of them. These beautiful and colorful Etsy zippered cases keep them organized.

When I first sat down with my Piedmont Hospital oncologist (hereafter, “Piedmont”) who had reviewed all my scans – mammograms, ultrasounds, bilateral MRI (both breasts), labs (bloodwork), pathology reports (analyzing the types of cancer cells I had) – he was very calm, like he’d done this a thousand times. Of course he had. He told my husband and me he was going to suggest a course of treatment and he used the analogy that the surgery I’d completed (the lumpectomy) was the cure and the follow on was the insurance. I wondered if everyone who sat before him got this same spiel, but it seemed as if this insurance parallel was one at which he’d just arrived, customized exclusively for me. He said it’s like he’s our insurance salesman, and he’s going to recommend the fullest coverage possible, which for me translated to four rounds of chemotherapy plus radiation. In addition to his cleanly scrawled regimen on the pad of paper between us, he scribbled percentages. If you’ve strayed by now, folks, come on back, as we’re talking survival here. I learned my odds are 80/20, an 80% chance this will not recur and a 20% chance it could. My eyes welled up hearing this because it sounded worse than I expected. I assumed since cancer hadn’t leaked into my lymph nodes we had a simple guaranteed solution on our hands: scoop it out with a lumpectomy, get your chemo and radiation and off you go, all done. An 80/20 scenario didn’t come with such guarantee. However since then, I’ve thought about it in a different way; I had to. When your weather report forecasts a 20% chance of rain, do you grab an umbrella? I know I don’t. I feel better now. Hope that helps you?

Did You Know? Lumpectomy + Radiation = Same Effectiveness as Masectomy 

So I rolled on and finished up chemo and after a month-long break when it was time for radiation to begin, I sat before a different doctor. Piedmont suggested we schedule radiation at Emory so it’s convenient (Emory is just a few miles from my home) since I’d be going 21 days, consecutive weekdays with weekends off. During our 45-minute wait to see the radiation oncologist to whom we’d been referred, my husband and I read all the literature given to us, including this doctor’s CV. She graduated magna cum laude from Harvard University with a bachelor’s degree in biology, received her MD from Stanford University and completed her residency in radiation oncology at The University of Texas MD Anderson Cancer Center in Houston. Whoa! Harvard AND magna cum laude (AND Stanford AND MD Anderson)? She will henceforward simply be referred to as “Harvard.” It turns out Harvard and two of her esteemed colleagues had already reviewed my case in detail, poring over labs, scans, pathology reports etc., before she landed on what she decided would be my best course of treatment: 21 rounds of radiation – 16 over the whole breast followed by five targeting the cavity where the tumor, henceforth “Coward” had been lurking.

Like a child playing mom against dad, I of course had to ask Harvard the question: “Piedmont tells me I have an 80/20 chance. Do you agree with this?” She thought for what was a briefer moment than I expected and said, hesitantly, “While I don’t want to overstep your Piedmont doctor… (can you see my enormous smile forming?), I think you have much better chances.” Me, eyes wide open leaning in closer, “How much better?” “Over 90%” (or less than 10% however your brain processes it), she replied. Incredulous, thrilled, giddy all at once, I thought to myself, seriously? I would ask again at a few other appointments, just in case Covid-19 distractions and her full patient load undermined her ability to clearly think and call it correctly, and each time I got the same fabulous grade.

Unrelated but perhaps related, I am a twin. My brother, Benjamin Redfield Woody, died just a few days after birth from hyaline membrane disease (a breathing disorder which today would have been treatable). I can’t report feeling any magic force within me connecting us. Of course, when I have bad days and feel like something’s missing, I laugh to myself because something is missing, my other half, my twin. Those twins who feel the same things yet live far apart in different states or read the other’s mind aren’t me, though with my twin not being here, it’s not exactly a controlled experiment. But how about in the case of an amputated limb? I hear some amputees still have the urge to scratch that leg they no longer have. I wouldn’t expect if any of my limbs were cut off, I’d have any ghost limb experiences; mine would simply be gone. Even when I was pregnant, I could never answer those commonly recurring questions: When is the baby coming and do you think it’s a boy or a girl?

I don’t think being pregnant or having a twin or getting cancer magically renders you capable of predicting outcomes, bestowing on you a mysterious celestial insight others didn’t get. For me, getting cancer was initially of course a big shock, but then it became just a lot more doctors appointments and uncertainty and days you don’t feel great. A lot more. I never felt as if I’m knocking on death’s door, but have wondered how big my tumor would be now had I not shut down its shenanigans. I don’t feel like a warrior with pink boxing gloves who has kicked cancer’s ass. I do feel I was a good patient, ever listening and thinking and acting without delay in my best interest. I don’t want to tell cancer fuck you, or join in a big pink march. I believe it’s now gone so there’s no tumor to cuss out anyway. Instead it feels quieter and gentler, just between my body and me. A malicious foreign thing grew inside me and I kept playing its game of hide and seek until I found it. I didn’t intend to start this game, but that’s where my mom gets some credit too.

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She’s watching over me still, helping me take good care. My mom, sweet Susan, also gave me her name.

As I’m inclined to do, I analyzed and over-analyzed this situation a lot (I won’t say analyzed it “to death” because this is of course what we’re trying to avoid, being cancer and all). I think it was a guardian angel or God or my mom (or maybe they’re all the same or decided to merge for this one mission?) who was nudging me that October afternoon to feel both sides. Because who does that three months after a “normal” mammogram? Assuming it was my mom, isn’t it interesting that my treatment was exactly 4 rounds of chemotherapy and 21 rounds of radiation, since her birthday is April 21 (4/21). Who other but a mom to push you out of the way when a train is about to hit you head on? Totally my mom’s doing.

All this said, I am inclined to go with Harvard. While Piedmont has been great and still is, how can you not opt for the better prognosis? I mean it’s Harvard talking, and you can be sure I’m listening.

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This is summer (or maybe year-round sunshine) in a can. And a tall one at that. Delicious and just 2% alcohol. Try it. You’ll like it.

These days when people see me and ask how I’m feeling, I know what they are probably thinking: Has the cancer come back? Do you think it will? Sorry to report folks, but hell if I know, your guess is as good as mine. Going forward, all I know is I’ll be eating better, exercising more, stressing less – things we all should be doing, but now me more than ever.

My tumor was labeled as 100% ER positive, which means estrogen was the only thing it consumed to stay in the game. If you sweep up every estrogen crumb and wipe down the cupboard evermore, presumably Coward’s got nothing to eat and therefore can’t find any reason to return. Piedmont has me on a daily estrogen blocker pill (Arimidex), to ensure there’s nothing to snack on should the malignant munchies strike. I’m told such fabulous things as dairy and red meat and alcohol, which my cancer loved, can elevate my estrogen levels, and getting lots of exercise will oxygenate my blood, which cancer hates. So I’ve dropped red meat and most dairy (except parmesan, you can stay) and alcohol is minimal and very occasional. Recently I’ve taken to Stiegl’s grapefruit Radlers, just 2% alcohol and super refreshing, and I am moving more, or at least on days I’m not, I’m thinking about it, which I didn’t before. I’m trying to do the granola-with-flax-and-chia-seeds-splashed-with-almond-milk thing for breakfast, but when you’ve got a Publix puffy-sugar-studded-cherry-filled-triangle pastry staring back at you that your kids threw in the grocery cart, you don’t always make good choices. I’ve cheated and splurged on sugar, eaten potato chips, had several exceedingly delicious bites of bacon, but realize each day is a reset and more often than not, I’m leaning into pretty good choices.

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Homemade granola: the better breakfast option

I’m to continue taking my estrogen blocker pill every morning for the next ten years. It’s a bonafide treatment and after chemo and radiation, this third treatment will be the charm. It’s tiny, yet powerful, the same size of the birth control pill I used to take and the Synthroid I do now. Aside from its intended job, Arimidex also might make my joints ache. However, all I can report two months in is my right hand ring finger feels a little swollen and stiff. No big deal. To its discredit, this pill does plunge you into a menopausal sweaty never-can-get-the-temperature-right mode. Throw summer heat on top of it all and let’s just say showers are my friend.

Every three months I’ll go back and see Piedmont and he will do labs to check for any abnormalities. He said at these quarterly appointments he will just talk with me and look me over. He doesn’t believe in scans – calls them old school – but I believe in him. He’s my insurance guy and I’ll be damned if I’m going to miss a premium payment.

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The recently planted fescue and I are competing for who’ll get the most coverage the soonest.
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You can’t even part it because there’s not much of a crown on top, but it’s coming in for sure.

The good news is my hair is returning. I feel like Navan Johnson in the movie, The Jerk, and in lieu of Steve Martin’s character screaming, “The new phone book’s here, the new phone book’s here!”, I’m screaming, “The new hair’s here, the new hair’s here!” thrilled at the new crop coming in, daily checking for more.

Like the fescue that’s managed to push its way through the packed and cracked Georgia red clay in our back yard, bulldozed from the renovation underway, my hair is definitely coming back. I don’t see any signs of a grey curly brillo pad emerging as some warned, but instead see just the same dirty blonde I’m-in-my-mid-50s hair from before. I’ve got somewhat of a mullet going right now with the formerly bald sides filling in where the chemo cold cap didn’t fit well. My longer hair, which hasn’t been cut since October, still hangs down straggly, the last four inches or so blonde from last summer’s foils. However, in a baseball cap, no one’s the wiser. Why should everyone know? It’s a heavy enough burden for me to carry, so why sling it on others’ backs? As for the hair, I’ll even it up at some point, but it’s so nice and feels warmer and is a delight to see and feel my former partly bald scalp filling in. I’m heartened by this physical sign that I am healing and my cells are happily busy at work churning out new good things instead of just fighting off tumors and weathering chemo.

I’d like to say this is my last post about all this, but assuming it doesn’t return, and I am wholeheartedly making this assumption, I suspect I’ll still talk about it some more. My surgery date was November 21, so after each November 21 that goes by I will breathe an increasingly bigger sigh of relief. After five years, the chances are far slimmer for a recurrence, and after ten, I will be “cured,” and Piedmont says I won’t need to see him anymore. This experience is now forever with me and a part of me. I hate that it showed up but love that it is gone. I love myself for pushing for answers, pushing through treatments and pushing for something better now that I’m on the other side. And if you’re still here after all these words, I love you for sticking with me. A big love fest all around. And just so we’re clear, Coward, you’re not invited.

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breast cancer, Encouragement, Family, Food, Health, self care, Sunshine

Hurry Up and Wait

IMG_7129Friday I did my big bell ringing victory lap after chemo and was feeling all high and mighty. And then Tuesday hit. Right on time after the 72 hour coverage of anti-nausea meds from Friday’s treatment. I’ve never had it hit before three days post treatment, so why now? I’ll tell you why. These nasty chemicals want you to experience every ounce of this crazy ride, and despite being on your last treatment when you’d think it’s finally time for a break, they will hold good on that promise. So Tuesday was nausea day. As in vomiting 12+ times. All day I focused on trying to feel better. Then the next day I forgot to swish and the famous chemo mouth sores you’ve probably heard about started to happen. Oh, no you don’t, and I swished multiple times and now I think I’ve staved off those from coming. It’s a crazy game where you are trying to outrun these little annoyances and get the skin you live in to stop aggravating you. You have to wait it out and let time do its thing, yet you want it over with. Good luck.

Our construction we’ve been planning for years has been on hold due to the many weeks of rain. Our cellar looks like a retention pond. We’ve picked the brick we will want surrounding the cellar and around the new fireplaces and are ready to go. Waiting on the weather and a good stretch of days that make starting up again worthwhile. We’re so ready yet must wait it out. I worry the renovation will drag on and then I laugh at my worry. We’ve started at least, haven’t we? That is huge. A truck pulled in the drive today and I thought wow, maybe they’ll work in the rain. But alas, it was the porta potty truck changing out the toilet. Still, progress with a clean toilet. Maybe the news will spread that the toilet is brand spankin’ new and we will have workers’ trucks again crowding the driveway. The sun has to come out again. It always does.

The sun has to come out again. It always does.

My son has long finished his college applications and was deferred by his first choice. He’s got another week of waiting until he knows. Big decisions. What town he will live in, will he be in state or out? All that work, the essays, the SATs the applications and then the endless waiting. I tell him just a little longer, but it’s no help. You just have to ride it out. He’s gotten several acceptances, so he has places to go, good places. But still, he is waiting for the answer he wants so he can get on with things. Time can be cruel. And so we wait.

My other son already in college in New York has applied for a post associate degree major and is waiting to hear. He worked hard and pulled together an impressive portfolio and is hopeful he can dive into this new course of study this fall. He’s plenty busy with classes and work and friends but not knowing if he’s accepted in this major is unnerving. He’s got another week until he hears. Time will tell.

FullSizeRenderIsn’t all of life a waiting game? Not much you can do really except maybe distract yourself and hope the calendar moves along, which it always does. But in between there is time with people and pets and work and play and delicious food. My sister and niece flew from Chicago to be with me during my last treatment. Such a treat to have the house full of girls and constant random conversation. We ate out and then ate leftovers and out again and more leftovers. Lingered over our morning coffee and laughed and shared and walked and shopped.

I’m waiting for the three week mark to hit when my body will no longer get another chemical blast. It must be thinking dear God, how many more days til we do this again, and I wish I could reassure it that this hell is done and it’s all about healing and strength going forward. Want to scream it to my hair follicles too who also aren’t sure what is going on. They’re still getting their weekly shampoo and holding on to the front and back of my scalp, but the sides just couldn’t fully hang in from a poorly fitting cold cap. Odd for sure, and cold when the wind blows, but under a cap it just looks like normal, albeit scant, hair.

IMG_7181In a robe for two days with my Pedialyte cocktail, I couldn’t decide today what foods would taste good. So with no planning and few groceries, I grazed. Oatmeal and banana, frozen Whole Foods bean and cheese burrito, bone broth with vegetables that the same angelic Pedialyte-delivering friend made, and then it went downhill from there. I glanced in the refrigerator door and there they were: Keebler fudge sticks. I’ll just grab one of those. What’s the harm? Then I had another. Those flesh colored chocolate dunked cream filled innocent sticks. Divine. Like I used to eat at my grandmother’s at her apartment off Peachtree Street. Always kept in the refrigerator. Later my husband came home and as I hadn’t shopped we had breakfast for dinner. He made bacon. I haven’t had a slice since November and I pinched a little off one. They were well done and cooked in the oven. Crispy, no fat, the no nitrite kind. Innocent, right? So good. Then I had a whole piece. Oh my, the food of the gods. I can’t love stuff like this but then I remembered my oncology nurse said once, if during treatment you want mac ‘n cheese, just have it. She didn’t mention what to do when the urge for fudge sticks or bacon strikes. I’ve decided no more fudge sticks and as for the bacon thing, maybe once a month I might have a slice. Surely that frequency can’t kill me? I just didn’t want to love it so much, but it was the best I’ve had. Like ever.

As I move out of self-soothing and into Friday shampooing, I hope this bizarre post chemo taste leaves my mouth and the sunshine that’s ahead will propel me back on walks and into enjoying large kale salads. I want my taste buds to really love what’s best for me and try to put the bacon and other stuff on the back burner and into the very occasional category. But you just reach for nostalgic comfort food when you are trying to feel better. I tell myself it’s ok. And so I wait to feel fully better and then once I am, radiation will begin. The calendar is indeed moving.

 

 

 

breast cancer, connection, Health

Chemo crash course

If you ever have to go through chemo or know someone who is or will be, here is a little primer, based on my three treatments so far, with one still to go. I can’t say these symptoms and solutions will necessarily be the ones you or your friends and family experience and go to, but they helped me. And I certainly hope you don’t have to deal with this or know someone who is.

ORAL CARE Floss: Your teeth will not fall out! (despite what the Internet might suggest) Just turn into a flosser, if you’re not one already. I was one before all this, and I have continued the habit. No point dealing with bleeding gums on top of everything else. There’s a nice floss out there, Glide Pro Health, Comfort Plus floss. Not cheap, but worth it. Rinse: a few days after treatment your mouth will feel strange, like you’re getting a canker sore or like you burned your tongue. Just rinse with salt water or else an alcohol-free rinse, like Biotene, or both. If you don’t, you might get a mouth sore, making it unfun and uncomfortable to eat. People are going to want to bring you food, and you’ll want to enjoy it. With each bite you can taste the love that went into making it.

People are going to want to bring you food, and you’ll want to enjoy it.

DIGESTION / Chemo attacks rapidly dividing cells — cancer cells and also cells in your GI tract. To ensure you don’t get constipated, keep a few things on hand and begin using them the evening right before bed after each treatment. Two things: Smooth Move tea (I know, whoever named this concoction made sure you get the idea). Brew a cup per the box instructions and drink it before you go to bed. Miralax – stir a packet in some water and also drink before bed. I made the mistake of taking these during the day and after my first treatment it took four days to get the digestive plumbing working again. Don’t make this same mistake! After my second treatment I decided to read the directions and took them at bedtime. Worked like a charm and I just needed to take them once and my digestion kicked back in until my next treatment when I repeated these drinks.

SKIN / The Internet will assure you chemo will make your skin super dry and you’ll have rashes. I haven’t found this to be the case except on my arm each time a few days after getting treatment where the IV was inserted. My hands are dry, but it’s winter and I do lots of dishes, so my skin is typical for this time of year. I keep lotion on hand and use after showering when my skin is damp. I’ll admit my face looks paler, but I also wonder if I’m looking for symptoms where there might not be any. I’ve got a powder bronzer that helps bring some life back. The cancer wellness program at my hospital offers loads of classes including one for skincare and makeup. Other than wearing some eye makeup and lipstick when I go out, I didn’t feel like going to some class to help camouflage my paleness or whatever tips they have on hand. I know these are likely useful and I love that they offer all this support, but I’m still not wanting to band together with others dealing with this too. I imagine I will at some point, but for now, keeping a low profile. I’m trying to operate as if this is as minimally invasive as possible, which we all know it’s not, but finding normalcy helps me.

I wonder if I’m looking for symptoms where there might not be any.

NAILS / Before my first treatment I read some people’s nails peel off during chemo and their nail beds turn dark. My doctor advised against getting a manicure or pedicure during this time, mostly to lower risk for infection if your skin should get cut. Also, they suggested I wear no polish so we can keep tabs on my nails. I’ve chosen to ice my fingers and toes during the first hour of chemo treatment when they administer the more toxic of the two drugs, and that has kept my nail beds normal and healthy.

NEUROPATHY / The stronger of my two drugs which wrecks your hair also brings peripheral neuropathy to your fingers and toes. You’ve likely experienced tingling in your hands and feet when they’ve fallen asleep. Chemo damages nerves outside your brain and spinal cord and your hands and feet take the hit, bringing neuropathy during treatments and sometimes beyond. If you ice your hands and feet during treatments, you can avoid this, and I’ve been doing it each time. Despite the tough 90 minutes, and also having to lug an ice chest, ice and trays with me each time, I highly recommend icing and avoiding one more symptom that could linger. Who needs a reminder of these days? I’d like them behind me as soon as possible.

Who needs a reminder of these days?

HAIR / Let’s be honest, these days will not be ones you look back on fondly as good hair days. If you’ve managed to keep some or all of your hair, the hair that remains has gone through hell. It’s tender, like a baby’s, and prone to shedding, breaking and thinning. Interesting that my body hair has remained. I bought something called Latisse which you brush on your lashes and brows, and so far those are still there. I have been using a silk pillowcase on my pillow at night which is supposed to promote less friction for your hair. Additionally, I use a gentle baby shampoo, Burt’s Bees, with very few ingredients. Because I’m using a cold cap with each treatment, I’m washing my hair just weekly vs every few days. The idea is deal with your hair minimally, use a wide toothed comb and comb just once a day to avoid matting. Also, no using hair bands, blow dryers, dry shampoo, or anything that will make you look better. Today I woke up and looked in the mirror and saw a gorgon, you know those repulsive women from Greek mythology with snakes for hair, who had the power to turn anyone who looked at them to stone. I don’t have these powers and my tender scattered tresses don’t really look like snakes, but the crazy bedhead I got this morning with strands going this way and that brought these gorgons to mind. Can’t say I’ve embraced these crappy hair days, but knowing they are temporary helps.

HEAD COVERING / I went back and forth on this. First I was getting a wig when my wrecked hair continued falling out. Then I learned a wig would heat up my scalp, pull on my hair and cause friction – all things contraindicated during cold cap cooling. So I’m going it alone, hanging on to the hair I’ve got. It’s scant on the sides, revealing my skull underneath the cross hairs, such that I’m not comfortable uncovered in public. I bought several pre-tied head scarves, but I’m no spunky fashionable Rhoda Morgenstern and don’t look great in them. She had the cute outfits, the large hoop earrings and great makeup, plus good hair underneath to boot. And I’m hanging around in yoga pants not wanting to call attention to myself. So instead I sport a baseball cap to accessorize my yoga pants, or when I’ve ramped up to black jeans or something nicer, I’ll go with a cashmere beret or corduroy or cotton bucket hat. I line them with a silk scarf so my hair gets a break. So far it’s working out. It’s interesting that I don’t want to choose the scarves because I don’t want to stand out or let strangers know what’s going on with me. I’m not ashamed, but in my effort to move past this, I’m keeping my cadre of supporters small, because why alert the masses and dump this news on more than is needed? Soon this news will be old news, treatments will be done, and I’ll roll on keeping kale in my fridge and baby shampoo in my tub, and no one additional will be the wiser. They say with this diagnosis with so much you can’t control, you can control how you roll on this “journey”, including how wide you let your support system swell. This feels about right.

You can control how you roll on this “journey”

DIET / Before I started treatments, I had visions of having a queasy stomach, like I did when pregnant, and not being able to figure out what I wanted to eat, what would go down easy and stay down. Chemo in these respects has been easy. I still like to eat most things I always have – but desperately miss Trader Joe’s frozen lamb vindaloo, General Muir’s reubens and Shake Shack’s double cheeseburgers – and haven’t found any foods I can’t stomach. I’ve indulged some, birthday cake when my son turned 18 and four straight days after, and have a new fascination with Pepperidge Farm chessmen cookies with a tablespoon of Haagen-Dazs vanilla. Thankfully the bag is almost out and I’ll fall back in love with kale and cauliflower and such. I’m reminded by my doctors, everything in moderation, so occasionally I will indulge again. I have noticed as treatments have progressed, the bizarre taste in your mouth or perceived texture on your tongue is ever present, so in that respect some foods don’t have the full flavor they once did. Did someone dilute my orange juice? Again, I remind myself this too shall pass.

Did someone dilute my orange juice?

NAUSEA / Other than after my second treatment which actually was an allergic reaction to the nasty chemicals surging through my veins and which resulted in severe nausea once home, I haven’t experienced nausea. After my initial treatment I made sure to take anti-nausea meds at night for two nights, just in case. I think chemo meds have come a long way and seems mine don’t bring this on thankfully. But having nausea meds at the ready is huge, and knowing you’ve got the tools to outpace potential side effects gives you peace of mind.

HYDRATION / They say you should drink lots of water normally and seems that’s true with chemo too. I believe the amount is roughly half your weight in ounces of water. I know before each treatment excessively hydrating has helped my IVs go smoother. Drinking plenty of water helps every cell in your body function better, and at a time when you’ve got chemicals destroying many of them, seems the remaining healthy ones could use all the help they can get.

Water helps every cell in your body function better

EXERCISE / As with hydration, exercise just makes good sense. My oncologist suggests I factor it into as many days as I can. Admittedly, I do it in spurts and when I do it, it’s walking for now. I’d love to get back into running but giving myself a break because some days when I feel shrouded in chemo ick, that weird malaise where you’re certainly not bedridden but just feel trapped in your own annoying skin, I can’t imagine pounding the pavement. Yesterday I walked with a friend and we did a dry run of walking to Emory where next month I’ll start radiation. It’s 2.8 miles each way, and we wandered around Decatur too, ramping our miles up to 6.8! Feels good to move and knowing it’s so good for me only compounds the goodness.

CONNECTION / I can’t underscore this enough. My family has supported me as have my friends. I’d like to not be consumed with this situation, these treatments, etc., but for now, I am. It’s my full-time job. My husband is being particularly patient and kind, and my kids show their concern and support too. Friends are reaching out and this contact reminds me I’m on their minds. Despite the ick some days bring, this feels particularly wonderful. It’s as if this big weight on your back is getting carried by others for a bit and you can lighten up some until you carry it again. It also helps to write this blog and explain this situation, both as a record for myself and to give details to others.

LOSE THE FEAR, FIND THE LOVE / I used to wonder what people going through this felt like, and I’ll admit I felt scared seeing someone who obviously is going through this, with their pale face, bald head or missing hair on their scalp, lashes or brows. Maybe they felt like hell outside or in and it took all they had to get themselves up and out to Target or a coffee shop or wherever, and that frightened me for them and I suppose now in retrospect, for myself. Maybe I was scared their days were numbered. Interesting to now appreciate that a bald head does not on its own indicate that at all (much like a kids’ snotty green nose does not indicate he is at the height of contagion). All that does is scream, hey, I’m in treatment. And that’s absolutely ok, good even, to get help with drugs that get the job done. It says nothing about your diagnosis, chances of recurrence or overall health. It simply means the drug you are getting in your treatments is wrecking your hair, like so many of them do. The people you see are still the person they were inside, or as them as they can be after such a diagnosis, and I’m still me, but with shitty hair.

This diagnosis and treatment has surprised me in how symptoms come and then go. After a treatment you have roughly a week to ten days where you don’t feel quite right, and after that in the remaining two weeks before treatment, you begin to feel increasingly close to normal. And then comes a new treatment and you are flooded back into the shock to the body with its eye twitches and weird tastes and all. And then with your last treatment you get to climb out of these cycles and with each passing week your body will begin to reclaim itself. I can’t wait!

What has surprised me most is how long this all drags on. I naively thought boom! Lumpectomy done, clean margins and lymph nodes, a little radiation and I’m all done! Yet it’s as if I’m on a road trip from Georgia to California and for weeks, I’ve been stuck in Arkansas peddling my Fred Flintstone car and going nowhere. We are going but sometimes it seems we are standing still, too. I think by now I must be coming on New Mexico, a beautiful state I’ve driven through. California is on the horizon and then this leg of the road trip will be done.

What has most surprised me is how long this all drags on.

If you know anyone going through this and think these tips might be helpful, feel free to share. I’m assuming my last treatment will be uneventful yet likely will write about it too. Until then, sending love from New Mexico.

xoxoxo

 

breast cancer, Health, self care

Homestretch

Today marks the 75% point, with three of four treatments now complete. Each one I finish is its own milestone, has its own personality, occupies a full day in my life, and brings aspects which have surprised me each time. To those who know me, you know I ask a lot of questions. Sometimes I get a dead end, and if researching, pore through more websites or calls to doctors to get to the answer I need. In the case of doctors, you can tell the ones who aren’t going to give you much time, those that stand up soon after the exam and head toward the door, with little time to get your questions in. But I manage to always at least get a few checked off my list before that door shuts.

The doctors, PAs and nurses I’m dealing with from my malignant breast tumor diagnosis are all great listeners, and I believe each of them genuinely wants me to experience success. You’ve heard that there are no stupid questions and that is indeed true. Asking questions leads you to new information, insights or even leaves you still without an answer. But if you keep going, keep looking at it from different angles, you’ll find with every symptom our bodies are trying to tell us things, even when it seems they’re refusing to cooperate.

With every symptom our bodies are trying to tell us things.

Case in point: Last treatment I had a helluva time dealing with the IV. Left wrist just wasn’t working so they moved to the right. Less of a battle there but still it felt unnecessarily carved up. Bizarre and painful to experience and certainly didn’t leave me confident about next time, about yesterday’s treatment. But at my halfway appointment between treatments where they draw blood to see how low your white counts are – there’s a range you should fall in and if you are under that, they can give you medicine to elevate those counts (thankfully mine have always been good) – I brought up the botched IV, how much it hurt, etc.. Even more important than my personal pain and anxiety surrounding it was the why. Why did this not work for my body when it had during my first treatment? The nurse suggested I needed to hydrate even more, especially the day before and day of my treatment. So hydrate I did and today’s IV and treatment went beautifully from start to finish. Up at 6am to shower and do my once a week shampoo, pack up my enormous Ikea bag made crazy heavy by my weighted blanket, a must if you’re gonna be cold and want some extra tlc.

Decided to treat myself and the night before called a nearby neighborhood grocery with a deli where I’ve discovered a favorite sandwich, the Mulligan. Who doesn’t love a mulligan or two or three? I’ve golfed and always make sure I allow for mulligans, yes plural – at least one for each 9 holes. This mulligan has turkey and avocado and the most perfect thinnest mandolin-sliced cucumbers flanked by delicious wheat toast, plus a little mayo and salt and pepper. Comes with cheese and bacon too, which I opted to hold as well as a middle third slice of bread. They said they’d make it when they opened so I could pick it up just after 7am, along with a bag of ice I’d need for icing my hands and feet. One stop shopping. Easy.

Got to Piedmont and they drew my blood to make sure all was well with various levels they monitor, and then it was a meeting with the PA to answer my four pages of questions. Never do I feel they’re looking at the door wanting to escape. She and the doctor give me all the time I need – sometimes a full 45 minutes – and let me rattle off any and all concerns, complaints and questions.

IMG_6916Next off to the 7th floor to the Infusion Clinic. It’s quiet in there and you get to pick your chair. The best seat in the house was open, right by the window in a little nook. Lots of guest chairs so my sweet friend Susan could sit nearby and even put her feet up if she wanted. Found a plug too so we alternated charging our iPhones.

I’ve decided to continue with the cold cap throughout my treatments, reason being is I still have some hair, or it looks that way under a cap. Last treatment the cap kind of hurt, like someone was pulling your hair, but I assumed that is just what I have to deal with for the 4.5 hours I have to wear it. I think it didn’t fit well and that is why I have some bald areas on my scalp and my left side is a criss-crossing of hair that partially reveals my skull, so not an option to go out hatless. I have a newfound understanding for men who do comb overs (except one tan man who unfortunately found his way into public office). This go round we worked even longer with the fit. You have to bring maxi pads which they tape to the bonnet under the actual cap trying to remove any air pockets which will lead to bald spots. So you sit there with a cloth bonnet, then a plastic covering with maxi pads taped on top and then on goes the actual cap which will fill with icy cold water and soon turn to ice. You get a brain freeze the first half hour but then you forget about it.

Prior to this treatment I reached out to the cold cap people sending them pictures of my scalp bald in places, and that I was planning to get a wig. They told me wearing a wig is not a good idea because the extra heat it adds to your head plus the pulling when putting on and off undermines all the scalp cooling I’m doing each treatment. Brand new news but news I needed, so I cancelled the wig. The cold cap people claim with scalp cooling my hair will grow in my regular blonde color vs grey or curly or something altogether different. Also they’ve said – and my own research corroborates this – that your hair will grow in more quickly – 1-1.5” per month vs the typical .5” growth you’d experience – that is IF you ice your scalp. So I’m rolling with silk scarf lined berets and baseball caps.

They started the IV and did the premeds so we could avoid a repeat of last time when I had bizarre sparkly floaters, a beet red face and awful chemical taste in my mouth, plus nausea and vomiting once home. First steroids and then Benadryl in my IV. Uppers and downers so I suppose I kind of broke even! Enjoyed chatting with my friend Susan who is so kind and calm. Almost hard to stay awake at times from the Benadryl, but glad it left me comfortable and relaxed. All the premeds were great shock absorbers for what I thought would be a bumpy road, but the road felt recently paved and slippery smooth this go round. Once it got to be noon we decided we’d eat our lunch. The sandwich wrapped beautifully in waxy white paper was everything I hoped for, and Susan had a lovely Greek salad to enjoy. We shared pictures on our iPhones of our kids and travels and whatever else came to mind. She adjusted my ice for my hands and feet, dumping out the water when it melted. She even several times massaged my freezing feet with her warm hands, extra loving touches that were divine.

The road felt recently paved and slippery smooth this go round.

Once the second medication was nearly done, Susan packed up and headed home as she was meeting someone. I remained the last two hours under my cold cap and weighted blanket and dozed off and on, relaxed and warm and still sated from my sandwich. They came to remove the cap and I waited another ten minutes in the ever-so-comfortable chair. Like after a massage when they leave so you can dress and you just lie there basking in the moment. This was one of those.

Up this morning and I don’t yet feel any eye twitches. Have a flushed face like usual but that is all. I think my body instead of fighting what it initially considered these chemical invaders is learning to live with them, and maybe they’re learning their place too, in the background with my strong body in charge. My body is rising above the symptoms they keep trying to bring. The scalp has stopped tingling and the hair shedding has largely dissipated, so maybe it’s all downhill from here? With three treatments behind me I think I’ll stop worrying about what will happen next because I’ve already seen it, lived it and now my focus is just on staying healthy, getting good sleep, eating well and moving.

Maybe it’s all downhill from here?

My posts about this diagnosis have been up and down. Sometimes I whine when I feel bad or scared, and when I feel good, I talk about gratitude and hope. Today I feel good so I guess that’s where my brain is settling. I think back on these last few months, and the wonderful meals a few friends have lovingly prepared, little gifts friends and family have sent, and I am bowled over with appreciation. Even the texts now and then from people telling me I’ve been on their mind – you can’t begin to know what lifts these things bring. You’re reminded that you matter and people care and love you, and on days when you’re tired of the grind, tired of the stamp on your back with this diagnosis, it helps you climb out of the situation and return to yourself. And then there are the walks with friends. Just yesterday after I returned from treatment, I headed out on a dog walk and was pleasantly surprised to run into a friend, a neighbor who lives down the street. We walked a half hour together with our dogs and caught up, and she even called me later asking if I needed anything as she was headed to the grocery store. It’s these little things that I will always remember when I look back on this time.

With all this, I’m reminded how lucky I am to have the excellent healthcare I do and the support of family and friends. I think of people with this same diagnosis who might not have insurance of even a roof over their heads, and then I want to put away my stupid petty complaints, the hair, the eye twitches and all. What matters most of all is having human connection when you’re facing something that at times feels monumental. Others will help you carry it and want you to let them. And so I am.

The snow is lightly falling and our construction crew is outside pouring the slab under what will soon be our screened porch.

Grateful and sending love. XO