breast cancer, connection, Food, Friends, hope

Hearts Wide Open

Maybe it’s this pandemic or the end of my cancer treatment, but I’ve been thinking a lot about how to improve things — my outlook, my sense of hope, tapping into more curiosity and creativity and connection, and not wasting any more of this precious time we get. When I started this blog a few years ago, I titled it Hindsight because I realized it captured so much of what I’ve been doing, thinking about the past and noticing patterns so I can learn more about myself. I hope to collect the best parts of the past and reuse and refashion them for these times, because those bits are the ones I want and need more of.

I’ve been thinking about not wasting any more of this precious time we get.

There are plenty of traditions I’d like to resurrect. For instance, I’ve been wanting to go on picnics again, remember those? Growing up, we had a red checkered tablecloth and four of us would grab the corners and lay it down flat, smoothing out the wrinkles. Then the real fun began, unpacking the basket full of delicious things our mom had packed. Usually we were by a creek or a lake, so along with great food, there was a beautiful backdrop.

Other than packing a meal to enjoy on a car trip, or dining alfresco somewhere, the last real picnic I had, the kind where you make and pack up all the food and sit outside on a blanket, was a surprise one my husband pulled off over two decades ago. It wasn’t fancy or somewhere out-of-town. Instead it was in Ansley’s Winn Park here in Atlanta, and he’d cleaned out our fridge and created a lovely spread, with salami and baguette and artichoke hearts and some sweets and nice beers too. I think he even brought a blanket to sit on. He’d stolen a few hours in the middle of his workday at Colony Square, and the two of us lying under midtown’s twinkling towers in my favorite park was perfect. I don’t know if it was the surprise, the delicious meal resulting in a cleaned-out fridge, the loving company or the magical backdrop that blew me away, but am thinking what touched me most, is how thoughtful he was to plan and prepare this.

Remember visiting with people, before the Internet and answering machines and DVRs, to those times when we spent an enormous amount of time outside? Times when you would walk to a neighbor’s and knock on their door unannounced and while away an afternoon just being together? My recent visit with my friend, Karen, while planned in advance, felt much like one of these. She greeted me at her door with one of those hugs you never forget: big open arms that pull you in tight and hold you there. I haven’t had one of those hugs in maybe ever, nor had I seen her since my breast cancer diagnosis and treatment. Her hug communicated so much – such happiness and relief to see me smiling and healthy. We drove to Stone Mountain and walked the five-mile loop, and then returned to her house where she gave me a wonderful tour . She pointed out memorabilia and told stories about special items she and her family had collected. Afterward, we had tea on her deck and with lovely Lake Kenilworth in the distance, visited some more.

One of those hugs you never forget: big open arms that pull you in tight and hold you there

Recently my sister and niece came down from Chicago, their visit timed with my last chemo treatment. After the excitement of picking them up from the airport and settling them in, I remember us hanging around my kitchen table nibbling on snacks and catching up. In my usual self-conscious, self-deprecating style, I was poking fun at my various bald spots on my scalp, out of my control from the chemo, the ones where the cold cap didn’t fit well, a visible sign I was now different from them, I was the cancer patient. They assured me I looked fine, and after I joked some more, my sister looked up with her kind loving eyes and said, “Susie, we love who you are no matter what is going on with your hair. You’re still you and we love you like we always have.” In that moment, I saw the truth. All my jokes aside, these two wonderful women before me in my kitchen knew me and loved me all the more. My eyes well up just retelling this.

You’re still you and we love you like we always have.

I’ve always said food is love and I still believe it is. It’s my way of showing I care, that I want to nourish you and delight you with something delicious, and it’s others’ way too. This simple act of preparing food for someone is so intimate and layered and loving, and whether complicated or simple, it’s a recipe that keeps on giving. Over these last few months, I’ve had a half dozen or so friends bring me delicious things — soups, stews, seafood and chicken, all healthy and homemade with love. I’ve frozen extra servings and reheated them weeks later tasting and receiving the love all over again.

I’m finding these times are further connecting us as we isolate. With much of the background noise of our busy lives gone, it seems our conversations, Zoom cocktail hours and texts are stripped down to their essence: how are we each doing and how can we connect, how can we help one other? I’ve got a few friends who thoughtfully tell me when they’re headed to the store and can pick up an item or two I need. And these days, I surprise myself by letting them. In turn, I’m already thinking of what I can do for them, maybe something special to eat or helping to solve a problem they’re struggling with. Or maybe it’s just staying in good touch.

How can we connect, how can we help one other?

The other night our power went out, unfortunately timed precisely during our return from a particularly large grocery run. As I knelt on my front porch, flashlight strategically propped and Clorox spray in hand, wiping down the contents from endless plastic bags, a rush of gratitude spilled over me at this sweet assembly line: I wiped down the items, one son took them from me at the front door and brought them to the kitchen where, by candlelight, the other son and my husband organized them and planned how they’d refrigerate and freeze it all with 1-2 limited refrigerator door opens. These hundreds of dollar’s worth of groceries were our livelihood, our next week to ten days of preparations and conversations over nourishing meals and yes, our share of Haagen-Dazs and chips, fried chicken tenders and other empty calories, too. The candles and oil lanterns I’d rounded up lit our hall, dining room and kitchen, so for the next hour until the power came back on we mostly hung around those areas, all of us hovering near all the food we’d scored and safely stowed.

Today the lights are on, the sun is shining and it’s a new month. It’s also the start of my new and final cancer treatment, the daily ten-year pill I started today to keep this long-gone tumor forever in my rearview mirror. This medicine is known equally for its effectiveness and side-effects. When and if the joint pain or night sweats or doldrums hit, I hope I’ll remind myself that these are signs that it’s working. I hope these annoyances will actually lessen or else become something I absorb and get used to, and that they begin to seem like the helpers you’re supposed to look for in times of need.

So, here’s to more picnics and visits and helpers, and to loving each other with hearts wide open. xoxox

 

 

 

 

 

 

 

 

 

connection, Encouragement, Grace, Nature, Uncategorized

The Show Must Go On

The birds don’t know. They’re singing as the sun climbs higher in the sky. Spring is continuing with its plans as various shrubs come out of hiding for Fashion Week, sporting pink and white and red buds.

The news outlets are encouraging us to call our grandparents – if only! – to find out what they used to do in their day, how they filled their free time at home, inside with family and outside, playing with their imaginations. Board games can be dusted off, families can reconnect and we can return to togetherness, the new separate variety.

What do you do if your family doesn’t like board games, won’t sit with you and play Scrabble (asking for a friend :)? Do you force family fun time or let teenagers default to video games and group chats? The prospect of being home together indefinitely looms and I suppose as with most things, you strike a balance, engage and disengage. There is food in the fridge and dry goods to tide us over, though I wasn’t early on amassing TP so we’ve got all of 14 rolls in the cupboard. I remind myself, stores will restock and besides, thou shalt not covet thy neighbor’s toilet paper supply.

That I even stopped to count tells me I’ve been watching too much news. My husband toggles between CNN and MSNBC, and the numbers of doctors and experts they interview and re-interview is staggering. Yet the news is largely the same: wash your hands the right way (I’ll spare you another set of instructions), stay home, practice social distancing. It will get worse before it gets better. What else can we do as we wait?

Italians are choosing to open their shutters and sing, tap tambourines and wave to one another across piazzas. The Whos down in Whoville had the same idea as they awoke to nothing yet realized they already had everything. It’s morning and those birds are still at it, and a light breeze ushers in their concert through my kitchen window. The sun streaks across the breakfast table as the house sleeps. The TV off dials up the sounds, the refrigerator rattling, the dog sleeping and cats moving through rooms sizing up the day.

The natural world is calling. While we can’t touch our eyes, nose and mouth, we can see and smell and taste the season, and let it touch us. We’ve all got tickets to our very own Broadway show outside ready to fill up our insides. Be well and enjoy the show.

 

 

 

 

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, connection, Health

Half Time Show

It’s half time and Be-Positive Susan is holding the lead against the Not-Benigns at 2-0 and heading into the second half, with the two remaining events on Feb 7 and 28. Yesterday’s second treatment was nothing like the uneventful first. A little update:

It began the day before when I started on the three days of steroids you’re supposed to take twice a day, the day before, day of, and day after treatment. The second dose I made sure I took fairly early at 3pm so as not to disturb my sleep. I guess my rpms must run high already – who are we kidding, we all know they do –  because I didn’t sleep the entire night. Those nights when you could swear it’s time to get up but it’s still just 1:45 am, and then 4am. So maybe I got two hours if that, but can’t imagine any more.

IMG_6659On my way out I saw a glorious sunrise, which filled me up. I had to buy ice and the locked box outside wouldn’t open with the key the gas station attendant gave me. Only the 20 pound bags were accessible and I wanted 10 which already my cooler wouldn’t hold. The attendant grudgingly came outside to help and me and she also couldn’t open it. Hoping she’d take pity on a running late girl and let me head out with the 20-pound bag having only paid for the 10, but no such luck. We had to go back inside and recharge my AmEx after I waited in line behind other customers. This extra 10-15 minutes cost me being on time and left me a tad frazzled. Got there with all my gear – my big Ikea bag carrying my weighted blanket (a godsend!), another soft blanket, my washed cotton bonnet which goes under the cold cap, the spray bottle to make sure head is soaked before starting cold cap, magazines, my lunch, steroids for morning and afternoon doses, socks for feet for icing, cooler for ice, containers to put my feet and hands in while icing and a hoodie and more socks. Got settled into a chair with my friend Elsie by my side and we began round 2.

IMG_6670Nurse struggled with IV for a long time telling me she’s trying to weave it in. Elsie looked over with concern seeing the nurse struggle and watching me whince. I reminded her to please just not look. I’m not going to as I never do, and I can’t handle the concerned looks as they bring worry to her face and to my mind. So we kept up some semblance of a conversation while the nurse kept poking my wrist from different angles and it didn’t seem like she was making any headway. All I could picture is she’s a novice crewel embroiderer (not cruel as she was super sweet) and is trying to do the satin stitch but instead working on some combination of it and a chain stitch, a frenetic criss-crossing of holes and angles, needle going in and popping back out at a strange angle. Had I looked I knew it would appear my wrist lost its battle with a box grater. I can say that it most assuredly hurt like hell. She suggested she get someone else to try to which I enthusiastically nodded yes, and another lady came by and switched to my right arm. This one took thankfully without too much embroidery gymnastics involved.

Got all settled in with my cool cap and hands and fingers on ice and they started the first drug. Not even ten minutes in it seems I had a reaction. I’ve had just one migraine in my life and that brought dark floaters cruising along horizontally. This situation did too but they weren’t dark things moving left and right, but instead a beautiful explosion of sparkly diamonds, round brilliants I believe, dancing in front of my face, like Tinkerbell’s Pixie Dust, and then according to Elsie, I turned Pepto Bismol pink very quickly. I knew something was wrong and Elsie thought I might be nauseus, and I loved to see her take quick action, dragging a trash can over in preparation. I suggested she call someone and she did and in no time three attendants came over dragging various monitors and they took all my vitals and asked me various questions. I’m a Leo and I love attention showered on me, and this I’ll admit felt good, safe. One weird reaction on top of the flush and floaters was this bizarre chemical taste in my mouth – maybe the nasty stuff from the IV had found it’s way into my throat? – and my back had a strange pain, like I had been slumping too long and needed to sit up. They called the doctor who suggested we stop the drug for a half hour and try starting it up seeing how I do after the break. Like a computer solution, turn the machine off and reboot. Similar to how pool staff react to a strike of lightning. Everyone out for a half hour. I really hoped I’d tolerate this drug when it resumed as I had my heart set on getting this treatment done and over with and setting my sights on the third. So IV drip stopped and I began to feel better. Then they resumed and it went ok. Joe recalled on the first treatment that they started me off slowly with a slower or lesser dose and then gradually ramped up to the full one. I did so well then that maybe they thought I’d be able to start full throttle with this second round. Next round I’m going to ask if they want to try the slow start again. I imagine the 0-2 hours sleep from the previous night didn’t help matters.

IMG_6677Re my hair, it did major shedding these last few days, as the cold cap folks warned, but it’s still there. Doctor thinks if I was going to lose it all it would be noticeable by now, so I think the cap might be working. They warn that you will have a good deal of shedding but don’t be alarmed as that’s normal around first and second treatments. It should taper off as I go on. These steroids have left with me English cheeks, that lovely flush you see in old fashioned paintings, but mine’s more intense and spread out.

When I left yesterday it was after 5pm, having arrived at 8am, so a long day. Horrible tummy pains when I left and I was to meet a friend for a drink (I’d already decided in advance that I would order a ginger mocktail as she sipped her bonafide cocktail). Went home and changed out of my chemo wear (long sleeve T, sweats and sneakers) and once out I headed to the restaurant and still felt bad. Knew I had nausea. Another girlfriend joined us and when I sat down I just couldn’t picture staying there, finishing out the night with our plans. I could feel it coming on, when the waters rise in your mouth and you absolutely must get to the restroom. I hopped up and headed for the ladies room, but couldn’t expel whatever evil had taken over my gut. I asked the waiter for a to go cup for my mocktail and paid and left, disappointed I couldn’t enjoy time with these two lovely ladies and head on to the poetry reading we’d planned to attend.

Got home to an empty house and made a B-line for upstairs, peeling off my going out clothes and swapping them out for sweats and a soft t-shirt. Soon my older son arrived and came to my room and could see I needed help. He brought Gingerale and a blanket and knowing how much I love hanging out with him, he suggested he sit next to me in my bed and we watch the remaining episodes of Modern Love, a series I’ve already watched but that I introduced to him, all set in New York, good writing and acting, a win win. Two sips of Gingerale in and I darted out of bed, and final got to expel my tummy mess. Twice. But didn’t feel any relief so it was back to lie down and try and get comfortable Another ten minutes later and a few more sips, and I did a repeat. Surely vomiting four times would leave one’s stomach feeling better? But not mine. It took another half hour and a fifth time to do the job. Joe came back from his out-of-town trip about this time and tried to get a read on my state and I had no words. I received him with an, all of you I’m done now just leave me alone glance, though his sweet hug hello was nice. So they left me and I passed out in my clothes and slept all night. This morning I couldn’t find my glasses to save my life – doctor says it’s best to not wear contacts over these treatments bc my eyes might feel dry – and after much searching on my crowded night table which had been doing overtime with half glasses of Gingerale, partial bottles of Gatorade and crackers and nausea meds, I found the glasses under my blanket where they’d been all night, directly under me as I slept.

IMG_6680Up today eating toast and drinking Gatorade. Pets all around and my dog has established a strange little nap routine, tucking her head under her mat. I’m feeling much much better. Graduated to a sweet potato and a little chicken. Last steroid this afternoon will be it until my next treatment so looking forward to no more big energy bursts and English cheeks, and settling into whatever this next round will bring. So much better to at least have experience of the first round and even this second. Anything goes with these crazy drugs and I’m good and ready. Despite a rough day yesterday, I am optimistic and thankful. It feels so good to have this behind me. Going through this you actually look forward to the next treatments. You want time to speed up and I’ve been filling mine with loads of things — good foods, a little TV, and some of my favorites have been loads of walks and talks. A handful of girlfriends have stayed in good touch and we’ve begun doing long walks. I started getting into that 10,000 steps thing using my health app on my iPhone. The other day I did a dog walk and two separate walks and talks with friends and that got me up to 6.4 miles! So fun and efficient to catch up with dear girl friends and travel all over town, in neighborhoods, downtown by stores, wherever. The conversation and our legs take us loads of places. Far better than sitting over a glass of wine like I used to do, though I do want to resume those, albeit sparingly.

Once I start radiation at the end of March, I’m considering walking the 2.8 miles each way. Maybe a little extreme, but I love the efficiency of getting your walk all done and moving through another treatment. The nurses thought that might be a little much and I’d become tired or stranded, but I might at least try one way walks there or back. Again, I’m looking forward to this, getting it done. All these little tests and then I finish. Thanks for hanging in there and listening and loving me.

 

 

 

connection, hope, loss, Uncategorized

9/11

IMG_4356The day is done. I woke up early this morning and went outside and saw the start of a murky sunrise, a smeared light-polluted attempt at dawn. Bats circled overhead and a nearby train whistle sounded, as a few jets criss-crossed the sky. It’s September 11th  again, a day studded with sorrow and remembrances, what ifs, and what nows, a day so many shared but now wished hadn’t come at all.

Eighteen years ago and four months pregnant with my second son, I had a busy career and on this particular morning, a meeting with an important TBS creative director. The Techwood Drive office lobby was bustling as I stood waiting, staring up at multiple TV monitors. One news clip showed tall towers in Chicago – Hancock and Sears – with a breaking news ticker scrolling along the bottom. Nervous enough about this meeting I’d worked months to get, what on earth was happening in my sister’s city? With no time to learn the relevance of the story on various steel towers’ breaking points under the duress of heat, I was called in and began my spiel presenting our portfolio of logos and brochures, annual reports and point of sale. The TV was on in his office, like everywhere in the building, and I noticed him pulled into the screen as I was, both of us realizing something enormous was unfolding. There was a knock on his door and a female colleague said people were asking if they should go home. He motioned yes but said he’d be getting with her in just a minute. Horrified and now with the sound turned up, we looked at each other unable to speak, and I started to pack up when he directed me to continue. I tried for a moment, but it felt terribly wrong, clamoring for business here, now a ridiculous idea with the relentless evil that was surrounding us, taking over.

A day studded with sorrow and remembrances, what ifs, and what nows.

Petrified driving home, radio on with accounts of planes crashing and towers falling, I was concerned more still was ahead. Atlanta of course would be next on this random hit list, and I worried my route home on Dekalb Avenue was a mine field. What kind of monster was this new world that my innocent baby would soon join? No streets felt safe, but somehow, I got myself home to my toddler and husband, quickly getting inside, shutting the door behind me. The next day as if on autopilot, I drove to Sak’s to find a bathrobe, and left with something beautiful, a soft charcoal grey with a scalloped shawl collar. How bizarre and inappropriate to be shopping the day after, but I must have needed this soft wrap to envelop my baby and me, a cocoon to be safe inside. It would be years before I could part with this safety blanket, and only then when it began to noticeably fray did I finally.

Everyone remembers where they were that day as clearly if it were last week, yet I know my story isn’t unique. Our own memories combine with the reel of news broadcasts and over the years they weave a changing mix of sadness and strength and hope we carry forward. If our thoughts of this day fill us with fear and sadness, can you imagine what it’s like for the families of the thousands lost? It must be an unfathomable deeply private and personal layer to wrestle with, on a day that is forever public, the mourning of that morning we together share.

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Son #1, in New York

My older son, at the time not even two, now lives in New York. I imagine the makeshift memorials, the candles, the music and memories, and wonder if he notices, his head full of school work and subway schedules and college sophomore stuff. The younger son I carried that day is himself headed to college in a year, and for them both, 9/11 is something they didn’t feel but rather grew up knowing about, from us, their parents, and even learned a little in school in APUSH class, studying the United States’ response to 9/11.

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Son #2, senior proof

 

 

When we visited the 9/11 Memorial Museum years ago, I worried about how this sensitive topic would be treated and hoped there wouldn’t be any hint of commercial flavor to this ticketed experience. When we arrived, we immediately felt the striking architecture, bold yet sensitive, and found the way finding minimal and helpful. If you could somehow gather every burnt, broken and twisted artifact left behind to tell the story of this unprecedented tragedy, this museum had done just that. Every detail, display, recorded voice, everything down to the varied lighting installed on different floors created a serene silent scene, and carefully, respectfully led you through that long dark day. Our tour docent spoke in a measured voice and presented a vivid account of this monstrous attack on US soil. Afterward, I thanked her for providing such detail that made it almost seem as if she herself had been there. She paused a moment, and then softly replied, “I was.” Tears rushed into my eyes and knowingly, she put her arm around me, comforting me, the New York tourist and she, the one who’d made it out of hell. I leaned into her for a moment, full on crying now, and then left to go outside in the sun.

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Edgar Woody, pictured with a bourbon (and his dry humor)

My own September 11 started ten years earlier in 1991, the day my father died, so this day holds something additional. This year, I’m realizing, marks the halfway point. I was 28 then and now at 56, I’ve lived as many years without him as I have with. It doesn’t intensify the loss or anything, but interesting for me to realize nonetheless.

If there’s a silver lining, it’s this: you’re here today, so keep going, keep building, keep learning and loving. Stay in touch with people and make plans. There’s lots still to do.

I leave you with a timeless poem published in 1844 and sounds from the memorial bell tower erected a year ago in Shanksville, PA.

Peace and love.

 

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The Day Is Done

The day is done, and the darkness
Falls from the wings of Night,
As a feather is wafted downward
From an eagle in his flight.
I see the lights of the village
Gleam through the rain and the mist,
And a feeling of sadness comes o’er me
That my soul cannot resist:
A feeling of sadness and longing,
That is not akin to pain,
And resembles sorrow only
As the mist resembles the rain.
Come, read to me some poem,
Some simple and heartfelt lay
That shall soothe this restless feeling,
And banish the thoughts of day.
Not from the grand old masters,
Not from the bards sublime,
Whose distant footsteps echo
Through the corridors of Time.
For, like strains of martial music,
Their mighty thoughts suggest
Life’s endless toil and endeavour;
And to-night I long for rest.
Read from some humbler poet,
Whose songs gushed from his heart,
As showers from the clouds of summer,
Or tears from the eyelids start:
Who, through long days of labour,
And nights devoid of ease,
Still heard in his soul the music
Of wonderful melodies.
Such songs have power to quiet
The restless pulse of care,
And come like the benediction
That follows after prayer.
Then read from the treasured volume
The poem of thy choice,
And lend to the rhyme of the poet
The beauty of thy voice.
And the night shall be filled with music,
And the cares, that infest the day,
Shall fold their tents like the Arabs,
And as silently steal away.

 -Henry Wadsworth Longfellow

https://www.youtube.com/watch?v=q8zVVmetepE

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