Take Time to Smell … Paint Stripper?

The nightmare was bad, the kind that makes you choose not to sleep for the remainder of the night. It was 4ish when I awoke, though, so I lay in bed, listening to the sounds of the early morning: two foxes talking as they headed toward the park, early birds calling to each other – more likely warning others off but as a non-speaker of bird, I couldn’t say for sure. 

There was a gentle movement at my back. One of my doxies has been sleeping with me; and curled tightly against my back in my cold bedroom, she was dreaming, her paws twitching, her tail occasionally wagging. She wouldn’t want me to tell you this part … her small, pink tongue was sticking out of her mouth just slightly.

My oncology check-in was uneventful. The care team is mostly happy with my situation, reminding me to drink at least 64 ounces of water every day and moisturize, moisturize, moisturize. They Snow White-d me when I arrived:  “Let me see your hands.” It made me laugh but I doubt they got the reference, especially not the PA who seems somewhat humorless.

I’m doing well, more tired than I think I’m capable of describing. And wow, the chemo brain has set in. I forget the most mundane things – things I’ve never before forgotten. You can advise me to make lists and use a calendar – go ahead; I know you want to. Funny thing is, I do both and I STILL forget really mundane things. We’re talking about everything from a take-out order for one of my kids to a grocery item to a doctor appointment. 

Haley and I walked 10,800+ steps yesterday. It was cold and windy, not the best time to marathon-walk. Nonetheless, we walked. At day’s end, I was so tired that I tried to go to bed without eating, not feeling in the least inclined to bother. But all three of the kids stepped in to make sure I ate: Wheat Chex (the best Chex cereal; I will accept no argument to the contrary) and a banana was my choice and it was about all I could manage, lol. 

Today, we’re back at the spring cleaning. It’s been so much fun. I can see why the Maria Kondo’s of the world encourage it, though I think you have to be in the right mindset to see the value. We’re excited to be freeing ourselves of the burden to care for objects that no longer serve; but even five years ago, we wouldn’t have been able to do this.

My favorite place – one that has helped us a lot through this experience – is Construction Junction, a re-use store here in Pittsburgh. I’ve donated the unwanted and found new treasures that I’m really excited about. For example, we got two antique light fixtures. One will replace the gaping hole in the ceiling where the previous light was before the screws in the – oops, they cut the hole too big – drywall gave way, allowing the fixture to fall off the ceiling and swing by fragile wires. Now, all I have to do is repair the drywall and paint before I can hang that light – next week, if the chemo doesn’t chop me off at my knees. 

We were planning to put the second fixture – yes, we have a place for that, actually two. Cleaning out is not successful if you add back in all sorts of new stuff. SMH Anyway, the final location for the second fixture was being hotly debated – over the dining room table or in the kitchen. The kitchen will win because we realized that the dining room ceiling – my turn for an oopsie – isn’t wired for a light. The current monstrosity has a cord and plug, which I KNEW, obviously, but just kind of forgot in the midst of my passionate argument in favor of the dining room. 

We are, however, considering solutions for the dining room. Both of us are leaning toward removing the monstrosity (donating to Construction Junction, of course) and using ambient light instead. The monstrosity is so big that it’s forehead level if we move the table AND it is impossible to clean. There are reasons to keep something that’s been labeled hard-to-clean but “hating it” isn’t one of them.

Work was interrupted multiple times by dogs. It was so nice that the puppies were convinced that it would be warm. They insisted, multiple times, that it would be warm THIS TIME. Their disappointment was palpable. Mine would be too if only I had fingerprints but they were stolen by capecitabine. I hope I get them back later this year because dropping stuff is freaking annoying. Still, we were able to enjoy the sun, if not the temperature. Soon, we’ll have both.

Much love and time to smell the spring flowers.  

Take Time to Smell … Paint Stripper?

Free To A Good Home

Chemo Break Week – it’s like Spring Break without the alcohol, loud music, sunburn, and strangers trying to touch your butt. 

I’d love to say that day one of my off-week was incredible. I’d love to say that I won the lottery even though I didn’t play. I’d love to say that I can eat any food without it going straight to my thighs. You get the picture. Just be thankful you weren’t with me last evening/night. It wasn’t pretty. But enough about that. 

We’re spring-cleaning this week, while I have a little more energy. First, I do my daily writing sprints. Then, we work on cleaning up, cleaning out, and moving on. It’s a task my therapist recommended, something I dreaded, to be honest. But we’re finding it less difficult than I had expected. I guess we’ve gotten a clearer picture of what matters most to us. 

I know we could sell things but mostly we’re giving them away. That’s not some sign that I’ve received terrible news or anything. It just means that we want our living space more energizing and don’t see a reason to sell what can benefit others if freely given. 

In other news, my eldest son just finished developing a tabletop RPG that’s going to be included in a game bundle. All proceeds from the sale of the bundle will go directly to an LGBTQIA+ children’s shelter. I’ll give you all the details when the game becomes available. The entire bundle will cost $5 and will include somewhere around 500 games. Yep – that’s approximately $0.01 per game. Watch this space for the details if you’re interested in supporting an at-risk community and a great bunch of indie game developers.  

Tomorrow’s a big day – my round 1 chemo check-in with my oncologist. We have lots to cover – results of my latest bloodwork, the origin testing – gene tests that help determine if there’s something about my cancer that warrants special treatment, my delightful chemo side-effects, and … my weight loss (GULP). Should be a fun day. Might need a nap after.

Much love.

Free To A Good Home

How Do You Calculate …?

When I was 17 and nearing high school graduation, my beloved paternal grandmother, Myrtle the Turtle Traffic Light (I’ve talked about her before) was nearing the end of her life. She had cancer that she’d hidden from us for reasons she didn’t, perhaps couldn’t, explain. We didn’t find all this out until she called my mom for help with pain that she could no longer endure silently. 

It was 1984 – there were no PET/CT scans for cancer detection yet so Grandma Myrtle was admitted to the hospital for exploratory surgery that determined cancer was consuming her body. There was nothing they could do but try to keep her comfortable. She had a stroke while her body was healing from surgery. It took her voice, though she was able to gesture and listen to my chatter. The second stroke took her awareness. As I sat beside her bed, holding her hand, I could see that she had already left her body. But still, I held onto her until her last breath left. 

My sister and I had spent significant time with her as young children. She was busy, charismatic, active in her community, a widow for 15 years before she died, and a bit of a mystery to me. Nothing phased her. She could organize bus trips for seniors, run her local political chapter, take walks with her granddaughters, and teach her apartment neighbors how to play crazy bridge. 

How could anyone as strong be bested by illness? There was a lot of death in my childhood but somehow, perhaps because she was so easy to love?, her death hit harder. I worried about how she had endured the painful months leading to her call to my mom. When we cleaned out her apartment, we discovered dozens of empty liquor bottles in her storage. She managed the pain with alcohol. This, with the mental acuity of hindsight, is exactly the sort of pragmatic, low fuss solution I would expect of my grandmother. 

I’m halfway through week two of my first round of chemo. Have I explained the chemo pill treatment before? It’s simple – four pills twice per day for two weeks, then one week of no pills, then four pills twice per day for two weeks and on and on through the end of August. 

Last night, for only the second time since starting chemo, I was hit by a nausea brick. One moment, I was talking with my daughter. The next, I was standing, ready to race to the bathroom but deep breathing in hopes of preventing the forceful return of the single lemon Oreo I had just eaten. This is not a critique of Oreos. They are – aside from some of those misguided new flavors (pop rocks? In an Oreo?) – the perfect blend of crunchy cookie and creamy center. A lemon Oreo had seemed like a good mid-afternoon snack. Turns out that it was, instead, the day’s regret. 

While I was deep-breathing, my daughter was grabbing the Compazine. It helped enough that I was able to eat a very, very light meal (rice, just rice) so I could take my next round of chemo. That’s the important thing, you know. If at all possible, the chemo should continue. And so it does.

Next time, how about a story of my daughter’s cat, who waits for my middle-of-the-night bathroom visits to grab me around my ankle and attack? Every single time. Since he’s all black, he blends in. I’ve convinced myself that I could, otherwise, dodge his attacks. He’s a kitten and faster than the speed of sound. I definitely will never dodge his attacks. 

Much love. 

How Do You Calculate …?

Humans Only Have One Ending

I was working on a day-in-treatment blog post, thinking it might be useful to someone on the interwebs, but it was so boring I didn’t finish, deeming a nap more interesting. 

Instead, you’re getting a detailed retelling of one of my epic post-surgery dreams. What I remember is that I was sitting …. Yeah, no. I’m not doing that. I HAVE had an incredible number of seriously epic dreams in the last month, which seems to be very common after major surgery. By epic, I mean, they’re like whole-ass movies, even though they’re actually rather brief. I’m not sharing them, though, because dreams suffer in the re-telling. 

Disappointed that you won’t be getting dream stories? Sorry. They’ll cool and all but we need to talk about something important. Are you ready?

Even though I told you not to, you’ve Dr Googled my diagnosis. You’ve seen the survival rates, haven’t you? Don’t try to deny it. I can tell. I too know the survival rate is in the teens because I got my biopsy results a full week before my follow-up appointment. Do you know what it’s like to sit with that kind of information – keeping it to yourself – for a full week, probably longer, while trying to interact in a normal way with the people most important to you? You probably don’t. 

The truth is that I read the biopsy report late at night, sitting in the broken down old recliner – my husband’s favorite chair – where I slept because I couldn’t yet lie flat. And yes, my heart sank a little when I saw “carcinoma.” I immediately searched the word, struggling to spell it correctly. I wanted to know what cholangiocarcinoma was. The 17% survival rate seemed to shout from the laptop that couldn’t yet rest on my lap because, even now, I have tender, healing robot holes. 

I have cried exactly once since I first saw the liver lesion on my MRI results. It was December. I was walking to the coffee shop to work and had to take a break on a bench down the street so the tears could fall unseen by the baristas. I didn’t cry for me but for my children who were going to be devastated if I had cancer. It’s the only time I have felt like crying because Dr Google only tells about 1% of the story. It’s useful for advocacy and for support but it can’t tell you what my doctors know.

The difference between us is important: you have a web browser and a search engine, whereas I have those AND a care team. Until you have the latter, you don’t have the whole story. 

Some of you have been in those oncology conversations, just as I was with my husband. Oncologists don’t sugar-coat. They don’t talk in percentages and they are straight shooters. We knew at our first appointment that Ken was terminal. Guess what I did NOT hear? Yeah, I did not hear that I’m terminal. 

I’ve told you all before that I, too, will give you the straight truth and I am. My doctors are absolutely delighted, smiling and excited about my prognosis. I don’t currently have any cancer in my body. My chemo is preventive. It might become a regular feature of my life. I don’t know and won’t know that for at least six months. 

There’s a lot that none of us know: how I’ll respond to chemo (since I’ve only been on it for seven days); who will win Lord Stanley’s cup; how many temperature records we’ll break this year; when each of us will die. 

So, that being said, my friends, stop being weird. I am exactly the same person I was last year at this time. I could drop over dead tomorrow or celebrate my 90th birthday or anything in between. There is no terminal diagnosis. Someday there might be. And if there is, I’ll tell you. 

Believe me; I appreciate you and your well-wishes more than I can say. It’s still a huge journey and the risks are great. That said; if you talk to me like I’m a walking corpse, I will make fun of you.  

Now, how about a few pieces of news? I’m back to working on my latest book. It had to wait a bit until I could sit up comfortably, stay awake, keep my brain working, hold a laptop, etc. I need to get it done before chemo brain fog sets in but I’m at somewhere around 60,000 words so that’s absolutely do-able. 

I’ve been walking with my daughter and our dogs as the weather has improved. The dogs are more tired than I am afterwards and we’re all appreciating warmer days. I’ve finally finished two of my medications. And after weeks sleeping in a chair, I can lie flat to sleep and have moved back into my bedroom, two steep flights of stairs (approximately 44 steps) from the living room where I spend most of my day. 

These accomplishments may seem small to you but I remember that first attempt to put on my shoes, touch my toes, pour a glass of juice for myself. And I’m delighted to be exactly where I am right now.

Much love.

Humans Only Have One Ending

It’s Xelod(a)-off

My mom was diagnosed with lung cancer around the age that I am now. I drove to Erie from my apartment in Pittsburgh and sat with her in the hospital after her surgery, though she was mostly unaware that I was nearby. Eventually, her doctor got mad at me for being there, kicked me out, and limited the number of visitors. Because I was living in Pittsburgh, I don’t really know what life was like once Mom left the hospital. Did my dad actually take care of her the way she undoubtedly needed? 

Jump forward thirty years and my daughter drove me to the hospital (we had to be there at 6AM) for my liver resection. When I woke up – eight hours later in the hospital room that was home for five days – I was holding her pinkie finger. She held a straw to my lips so I could drink some water and offered me spoonfuls of gelatin. Sadly, the first spoonful made me feel sick so we stuck with water for hours. Lots of water. It wasn’t until the nurse said they were ready to remove my catheter that I realized how fogged my brain really was. I drank like 60 oz of water and never once considered that I didn’t need to empty my bladder. LOL 

Eventually, I was alert enough to realize how exhausted my daughter was but she refused to go until visiting hours ended – 15 hours she stayed, taking care of me, keeping me company, making me laugh. 

On Thursday, I got an echocardiogram, my baseline to make sure the chemo pills don’t damage my heart. The technician, who might be biased in favor of his test, said that everyone should get an echo. I’ll admit that it was an amazingly cool experience. Every time I get a test done, if the technician or doctor doesn’t mind, I’ll ask questions. I guess this tech – a former Marine with big shoulders and a deep voice – doesn’t get many because he really took to it, even telling me that he once got to do an echo for a patient who didn’t know they had dextrocardia.

Over the last two weeks, I’ve been getting my chemo training. Preparation for chemo involves a lengthy education session and multiple phone calls about safety. It’s a little easier with pills than infusion; we could (and did) bypass the tour of the infusion rooms. The whole education experience is a little like signing a waiver before you play paintball but without the fun of shooting globs of paint at your friends. 

My prescribed chemo pill is the generic equivalent for Xeloda (capecitabine). It’s among the least destructive of the genre, meaning that I can expect nausea, hair loss, diarrhea, hand and foot syndrome, taste changes, mouth sores, brain fog, and so on. 

The care team has to warn about all the potential side effects, of course, but in their effort to assure me that they can solve that (whatever that happens to be), they may, a little bit, make things worse. “If the discomfort gets to be too much for you, we can prescribe oxy to alleviate it.” (Oh good. /s)

I’m not even slightly worried about taking capecitabine. I’d do a lot more to ensure that I stay healthy for as long as possible. But the process has been challenging. When my husband was sick, I was his advocate. Now, I am patient and advocate. Sometimes that sucks, especially when I’m tired and grumpy and my robot holes ache.

For most of this week, I tried to get the pharmacy to give me my capecitabine without charging me $900 for a two-week round of treatment. I don’t have a prescription copay, you see, but I do have a large deductible ($7100) that I’ve already met because I just had major surgery and the hospital requires payment upfront. Yes, that’s right. (Don’t even get me started on healthcare in this country.) 

I know that if I give Accredo, the specialty pharmacy, $900, they’ll have to pay me back later, after Highmark finishes processing all the hospital claims that have been coming in since Feb 1st. One of the many things I learned during Ken’s illness is that, if you can help it, you never pay a healthcare company “just to keep things moving.” Ultimately, I’ve had to pay Accredo because there weren’t any other options. When I asked, the very nice customer service rep offered to send an invoice, which would actually delay treatment at least two weeks since, like the hospital, the pharmacy requires payment upfront. Instead, I’ll spend the next X months fighting with them to get that $900 back. Healthcare companies do not like to give refunds. 

Unfortunately, my lung infection has returned (or possibly never entirely left?). My mom would have called each dose of my Augmentin a horse pill, meaning it is sized to be consumed by a horse. She was terrible at taking pills and would absolutely have struggled with these because they are truly enormous. Once, because she would try to – I don’t even know exactly how to describe it – throw (?) her pills down her throat, she accidentally inhaled one, coughing and choking for a solid 15 minutes. She sneezed it out later in the day, an ending that both delights and horrifies me. 

I took my first dose of capecitabine – 4 pills – after breakfast this morning. We jokingly called my poached eggs on avocado toast my last meal because poached eggs are one of the prohibited foods. Many things are forbidden during chemo, including rare or raw meat and runny eggs, unless – as the nurses say – I’m really craving it. They know I’ll be fighting to keep food down. The general rule when Ken was in treatment was to get him whatever sounded good. But often nothing did. I’m determined, though, so even if it’s carnation instant breakfast, I’ll be putting some calories into my body every day. 

Let the puking begin …? 

As should be expected, even though I’m in a great place health-wise and mentally, I have spent some time thinking about my own mortality, considering past and future choices, kindnesses and cruelties I have caused or received. It’s not that mortality is a new concept to me; it’s more that I feel like this is an opportunity – with the unexpected time I’ve been given – to look again at what matters, shed what doesn’t. 

It’s a strange thing, to be at this point, and to consider that for some people who are important to me, the reverse is not true. And – an indisputable and obvious truth – you cannot make someone need you, value you. You cannot be important to someone just by willing that to be so. It’s painful. It’s freeing. It’s necessary to recognize and move forward. Knowing that interactions with them will never meet my expectations is a relief to acknowledge because it allows me to not expect anything from them. Ever. What a revelation. 

Maybe you too can find similar relief without having to first lose 20% of your liver. 

Much love.

It’s Xelod(a)-off

Follow the Path(ology)

If you need to have part of your liver removed, you are warned at your pre-op appointment that you’ll be unusually tired. You will probably disregard this warning. You will also be reminded that you can’t lift any weight over 10 pounds, that you can’t drive, that your diet will be soft and bland for a few weeks. 

You’ll get bored of the tedium quickly. You’ll want to do more than walk slowly on a treadmill. But when they tell you that you’ll be tired, they – as is the case with every single experience in healthcare – will undersell the impact. In fact, you’ll be so bone-deep tired that you’ll collapse onto your recliner – and by collapse I mean slowly sit because of the nagging ache just below and to the right of your breast bone – and settle into a not-sleeping stupor for 15 minutes after you’ve taken your very short walk. 

It’s a weird tiredness because only occasionally does it lead to sleep. Mostly, it just means you don’t have the energy to do the normal stuff humans do. Standing takes longer because of those inconvenient stitches and glue spots all over your abdomen. Once you’re upright, you might really want to savor that time but you’ll need to rest very, very soon, which will annoy you because it means you have to sit in that damned recliner again. Dammit. 

The good news is that all of this is excruciatingly normal. If this is your experience, it’s likely that your surgeon is very happy with you. I saw mine yesterday and she’s so happy she only wants to see me one more time, at the very end of my healing process so she can poke once more at what will, by then, be scars instead of glued robot arm holes and a long stitched-up incision.

What’s been the worst part of this experience? Coughing. The first week or so, coughing felt a little like my organs were trying to leave my body through those robot arm holes. Thankfully, everything is still where it is supposed to be (other than that one lobe of my liver, haha) and coughing, sneezing, standing, sitting are mostly easy tasks again.  

I’m sitting in that battered recliner now, looking out at the sun reflected off a neighbor’s window pane. It’s like a spotlight on my face and warm in a way that is both physical and emotional. A dear friend to me, Nikki, told me once that she found tremendous joy in looking out her window. She’s been on my mind more than usual. Her advice to me sits like her presence on my shoulder and not just because she lived with more grace than anyone I’ve ever met. 

The story is all good news. Although the biopsy came back positive for cancer, the margins (edges) of the removed lobe were clear. I’m technically cancer-free and to ensure that there’s nothing tiny lingering to cause trouble later, I’ll be doing 8 rounds of chemo (pills) starting in the next week and listening fully to Nikki’s advice. (Get up. Go for walks. Find joy in every day.)

If you want to vicariously participate, you should follow the blog. I’ll keep telling my story as it progresses. Next week, I’ll have a CT of my chest, an echocardiogram, and some blood work. Then, I’ll begin taking pills twice a day – lots of pills. Lots and lots of pills. 

No worries, my friends. I’ve already told my kids that I’m planning to live so long that I spend all of their inheritance. 

Much love.

Follow the Path(ology)

Live(r) Your Life

I’ve spent so much time in hospitals that I have that instant clarity of meeting an old acquaintance and falling into conversation as though you’ve never been apart. No matter which hospital you are in, the smell, the sounds, the directions (follow the arrows for elevator E, bring your ticket for validation, show your ID to enter the building) are basically universal. 

And yet, despite that deep familiarity, there are things I always forget – the way patients wait for hours, the texture of the food, the unique kindnesses of the support staff, the emotions that fill the air, leaking from various open patient doorways – grief, panic, fear, acceptance, relief. 

Roomie 1, the OG, had already been in the hospital for a week when I arrived. She was angry, her mood emanating from her like a toxic gas. I celebrated her return home for her benefit and mine. #2 roomie was very elderly, stuffed into my room for the night for observation. She’d fallen out of a car and was pretty banged up. Roomie 2 was beloved by her family. She had so many phone calls and visitors that I wanted to remind them that she was supposed to be resting – and so was I. But she wasn’t even there 24 hours so I left my bitchy comments on my side of the floor.

My third roommate, let’s call her Marietta because that couldn’t be farther from her real name, arrived from another high monitor unit in the hospital. She was very sick. The hour was late. Her care team was with her into the early hours of the next morning. There’s no privacy in hospitals so, since I couldn’t sleep, I listened to the conversations. The staff talked to her, asked her questions. She frequently didn’t know what was going on, wasn’t aware of some of the care decisions that had been made. 

At some point, I was able to put together enough pieces to realize that she’d been unconscious, unable to consent to some of the care she received. We were in a high-monitor surgical oncology unit so it’s not that surprising. Things come up during surgery. My care team and I went through the major decision forks that could appear so that they would know what I wanted before the anesthesia was administered but that isn’t always an option. 

Eventually, her care team left for a few hours but the doctors round early. They arrived to talk with her before the sun was above the horizon. The discussion was one I’ve experienced. Hospital familiarity can be reassuring – sounds and codes don’t make me anxious but there’s a certain food served in the cafeteria that I can’t smell without feeling a cold sweat on my forehead. 

Anyway, she asked when she’d be shut of all the bags she was wearing. If you don’t know anything about these, just google ‘ostomy bag’ and you’ll have a general picture. Since Ken had colon cancer, I know quite a bit about ostomy bags because he was supposed to get at least one. While I sat in my curtained-off alcove, the doctors explained that she was entering palliative care. 

Have you any idea what it feels like to be sitting on your uncomfortable hospital bed, no headphones, unable to easily move around because you have four brand new and very sore holes in your abdomen, and nowhere else to go anyway, listening to a young doctor tell the unseen woman beside you that she is dying and there is nothing they can do to stop it? He kept saying “let’s focus on making the time you have left as pleasant as possible.” I know he meant well. I do. I had forgotten, perhaps on purpose, that this is another part of being in hospitals. 

Ken’s care team would use phrasing like “keep him comfortable” and “most potential for extending his awareness.” I wanted to go through the curtain and ask her if she understood what they were saying, though I could hear her tears. I also wanted with an all-consuming passion to be ANYWHERE ELSE. There are no exits from a locked unit but if I’d been allowed to walk unaided, I might have become a human ISS, traveling the unit hallways for the foreseeable future. 

We weren’t friendly, exactly. It’s hard to become even acquainted with one person (me) constantly resisting the connections that the other (her) continues to offer. We talked a little bit, occasionally. Each time I struggled with a task, she’d make strange offers of assistance – and what exactly are you going to do to help me, occupant 2 of Room 899B? Your care team won’t allow you out of bed so quit asking me if I need help. 

Because I can’t help you. I can’t.

I took many walks with a walker or when I could manage it, just holding my IV octopus – I had five active lines. Basically I was constantly tangled in or tangling things, some of which hurt when you tug on them. There was a young man, later 20s probably, taking the same walks I did, though he had a single room and wasn’t guilt-walking the corridor to hide from his terminal roommate. Like I said, it’s a surgical oncology unit so unlikely he was there to get a bunion removed. His gait was better than mine. He’d been walking longer. We’d pass each other on the route. There was little maneuvering room so occasional clipped wheels were common but we never spoke. 

Eventually, I’d have to return to my room. There’s no place else to go – bed, sitting upright, or chair, also sitting very upright. Marietta would launch a possible conversation grenade at me and I’d answer briefly before muttering about a nap or a sponge bath. In the early morning hours of my last day, we were both propped up in our spaces as the hospital began to come awake. “Can I say something?” she asked through the thin barriers of our privacy curtains. 

“Sure,” I said, sure that she was going to comment on her life or my evasiveness.

“Your daughter ….” She paused a moment. “Well, she’s beautiful but that’s not even what I want to say.” I heard her fidgeting. “You’re lucky. She’s wonderful. And I can tell that she loves you very much.” 

God help me. I wanted to cry, was determined not to cry, didn’t cry. I am so very lucky. She’s right and I know it. My children are amazing. Mostly, I asked them to stay away from the unit. We spent so many months, painful, traumatic months in hospital rooms. They did not need to see me beside a woman who is the living embodiment of their dad’s illness and future death. 

I thanked her and was quiet again. There aren’t good words to tell a dying woman that my blessing isn’t her curse. There are almost no good words to say to someone who is dying. When I left later that day, I walked around the curtain to meet her. She’s older than I thought, looks vaguely like a well-known comedian. Her hair, short like mine, is a vibrant color, startlingly against the hospital bed. 

When I spoke, she said, “Oh, you’re the woman behind the curtain.” 

I nodded and held up two unopened water bottles I had left. “You want my extra water?” I asked her. 

She smiled at me, her eyes tearing up again. “Yes, thank you,” she said. “Go. Live a joyful life.” Marietta waved her arm above her head like she was cracking a stage coach whip before a team of horses. “Go now. Live.”

Much love. 

Live(r) Your Life

A little rain under the robotic knife

Life is so crazy some days. And then others, you’re sitting on the side of the road in Texas waiting for the police officer to issue you a warning for doing absolutely nothing.

My paternal grandmother, Myrtle the Turtle Traffic Light, as my sister and I use to call her before dissolving into the sorts of giggles produced only by very young children, was the kind of woman who would absolutely have been a rule-breaker, a flapper, a radical feminist. She was a little bit wild, an assertive leader, who received surprisingly naughty letters from her future husband. Those letters have changed me (what is once seen cannot ever be unseen) in ways that are probably not for the better. I think I’d have preferred to see her letters instead of his but apparently men of that era were less inclined to keep love letters tied in a bundle.

Many years ago, probably in the late 1970s, Grandma MtTTL took my sister and me to see a version of The Ink Spots perform at The Brown Derby, a long-ago restaurant in Erie. We were the only children in the audience and those elderly men were absolutely delighted to introduce us to the music that has influenced so many musicians who came after. 

The Ink Spots profoundly proclaimed in one of their songs “Into every life, rain must fall.” No one, in the history of forever, has been more right than they were in that song. 

There’s a thing – it’s not X, Y. or Z. It could be an anomalous A or a blah, blah, blah. It’s big and it’s on my liver. By the time most of you read this, I will be in robotic surgery, after which I’ll rest in some high-monitor unit of a hospital. I’ll be lighter by 20% of my liver and grumpy. Neither of these would be normal for me; nor were they on my bingo card for 2024. See the above paragraphs for pithy wisdom about predicting your future.

Why am I telling you mid-event? Why am I telling you at all? Why me? (Why not me?) There are no good answers to these or many other questions. I won’t have access to technology for a few days and then I’ll be using my initially limited energy to finish a project I’ve been working on. I will check in, though, to let you all know about life with less liver.

Don’t worry about me. I’m in good hands and in good spirits. And I’ll have a cool scar to add to my collection. Maybe, if it’s worth it, I’ll write a blog about the experience. 

Life is crazy some days. 

Much love. 

A little rain under the robotic knife

The Endless End

Mortality is that person you never think about until they start texting you to “hang out.” They aren’t a friend or even an acquaintance, however you choose to define that. You’ve seen them in passing, at a funeral or in the eyes of an elderly neighbor, but you don’t KNOW them. 

It’s awkward, really. Because you have friends in common, you don’t want to upset them by ignoring their “have a chat” messages; but you also would rather pull out your own teeth than associate with Mortality. They’re so, so  …. What is there to say? They make you uncomfortable. You can’t quite put your finger on the problem, on why you dread interacting with them. 

They are oddly omnipresent at certain times of your life, too, which is beyond frustrating. Just when you most want peace and brightness, look who’s calling. It’s Mortality with a “you up” message that’s as far from sexy as your partner saying, “who gets to use the bathroom first?”

It’s 3AM. You’ve kept your eyes closed for hours in a determined attempt to sleep even though there’s no chance it will work. All of a sudden, there’s an almost physical tap on your shoulder. Mortality has tucked themselves into bed next to you and they want to chat. You’re sure that, if you could just lie still for another minute, you’d fall asleep but not with Mortality in the bed. Worse than them wanting to talk is their preferred topic: all the things you least want to discuss. 

“Want to talk about things you regret, times you hurt someone whether intentionally or not, the all the things you might never get to do again?” Ouch. It’s as painful as a parental look back on all the ‘last times’ you did something with your child – the final time you: carried them up to their bed, gave them a piggy back ride, tucked them in, read them a story, played with them. Oh, hey, Mortality, thanks so much for bringing up all the other potential LASTS in our futures and our pasts. 

Mortality isn’t vindictive. Imagine if they were. The merciless brutality of their existence would be worsened incalculably if the focus of their attention was also their latest victim. The potential for true cruelty is endless. “Hey, Mortality here, let’s talk about that time you watched your crush kiss your best friend.” Instead, Mortality is just saying, in the gentlest manner, “hey, thinking about you” and “are you thinking about me?” 

God, yes, I am but I sure wish I weren’t. 

Much love.

The Endless End

New Year, New You?

So, it’s 2024. Do you have a Holiday HangoverTM? Did your 2024 resolve become reluctance when your alarm buzzed this morning? Don’t be discouraged. Time is a construct. You can actually start anew anytime. The date on the calendar is irrelevant, actually meaningless, unless you’re complying with America’s outmoded tax filing laws or you’re a child counting the days to your birthday – “Mom, mom. You told that lady that I’m 7. I’m not. I’m 7 and a half.” 

Is there a point to all this? Not really. True change can and does occur without resolutions and calendar pages. It took leaving the corporate world for me to be kinder, to be present, to know the people around me. I hope that, when I near the end of my days, my thoughts will be on the smiles I created and not the times that I failed. As the darkness closes in on me, I’d like to know that I helped someone, not that I won something. When I am gone, I’d like for people to remember my love for them, not my fumbling mis-steps, of which there have been many. 

All those self-improvement social media posts and books that challenge us to have “no regrets” don’t really mean that. They’re actually telling us not to lament where we focus our time, energy, and attention. Everyone regrets careless words, poorly worded jokes, unkind actions. No doubt it is the worst use of energy when, instead, we could set the intention to learn from our unkindnesses and then, ACTUALLY change our behaviors. Nonetheless, behaving better in future is not self-forgiveness for past actions. 

When my husband was receiving chemotherapy, his skin deteriorated – yes, this story has a related point and I recognize what a surprise that is. The chemo was very drying. He was supposed to moisturize heavily … and we had to be careful what kinds he used since some contain ingredients that are very hard on chemo skin. He refused to use any moisturizer – and I’m talking hardcore, back-to-the-wall noping. His skin – particularly his feet – began to peel and crack. I searched for different versions of body lotion, thinking he didn’t like the texture or the unscented scent of the various brands I bought. He continued to resist. We became Virgil Earp and Frank McLaury. 

I’d had many conversations with his oncology social worker about where to draw the line, where to encourage him instead of doing on his behalf but I’ll never know if the lines I drew were in the right places. None of my choices would have changed the outcome but could my actions have made his days more peaceful? Perhaps, on the other hand, if I’d done more for him, he would have done progressively less. Thus, my deep and abiding relationship with regret and forgiveness.

With the closing of 2023, I found myself listening to a lot of introspective music, perhaps coming to grips with some of my more questionable life choices? Some of the songs continue to resonate as the new year begins:

“Playing God,” by Polyphia. The band was started in 2010, when Tim Henson was only 17. At that age, I was learning to drive, working at McDonalds, and wondering whether I’d ever tell my high school crush how I felt. Tim was taking garage band to the next level. He plays an acoustic-electric guitar created specifically for him. His virtuosic acoustic performance of “Playing God” is astounding, though you should also listen to the full band performance. 

“Little Life” by Cordelia. It’s a new song, all the rage on social media. The lyrics are a bittersweet acknowledgement of our own failings, of falling and standing again. There’s an earnestness to it that I keep having to acknowledge as my life choices slap me over and over again. No matter what happens, I think I like this Little Life.

“The Mountain Song” by TopHouse. This song is a bit of a departure for me, a bluegrass-y sound with Irish influences. I don’t know where I first heard it but the mountain metaphor for the struggle and beauty of connectedness is particularly lovely to me. My days are often surreal in ways that aren’t really explicable except when compared to the concept of climbing and falling and starting up the mountain again. 

Much love.

New Year, New You?