Category: Health

Covid-19, uncertainty

Eighteen days to Brenda

Susan Greco

I went in August 24 for a diagnostic mammogram. My radiologist suggested I go ahead and get one instead of waiting until October as my gynecologist had planned. The mammogram at this hospital presented stark differences. The robes you change into aren’t a screaming, Pepto-Bismol pink, but a white soft cottony waffle weave accented with subtle thin pink piping. They’re stacked neatly waiting on you in a warming box. Divine. Here I found few deep Southern accents, but more Brooklyn, and simple pastel beach scenes or botanical wall art; you’re not coddled as much either, which surprisingly I liked. Besides, the last place brought bad news, and I am so over bad news, so I  needed a new place.

When you’ve had what I’ve had (yes, I now get to check the “history of breast cancer” box), for future mammograms, instead of going home to wait on your letter in the mail, your results are on-the-spot. It was a long wait, and after looking each other up and down for a few minutes, a woman across from me and I eventually broke our masked silence with a “What are you in for?” dialogue. Me: “I’m Stage II, 100% ER positive, post lumpectomy, chemo and radiation.” You? “I’m triple negative.” Even though no one in our predicament can determine exactly how we ended up here, we each tried our best to reveal what might have contributed, with a Forgive me for I have sinned confessional to each other. She: “I used to eat ice cream every single night.” Me: “I’ve stopped red meat and now only occasionally enjoy a glass of wine.” 

A nurse calls her, and she gets up to go hear her results. Next a man, I presume the radiologist, got me for mine. Immediately I assumed since I got the doctor, the news seemed more complicated, and complicated could spell trouble. We went to a room that was far too nice for doling out good results. He made small talk before he dove in, admitting if he didn’t know better, that I’d had a lumpectomy, my scans might have raised a red flag. Lots of them as it’s a mess in there. Not his words exactly, but with all the pins, scar tissue and density obscuring things, he seemed exhausted from wading through the scans, as if he’d just returned from war. 

I knew my left breast was a mess when back in 2000 I began breast feeding my first baby. I knew there was milk in there but, damn, quite the struggle to get it out! Always a poor producer and the plumbing seemed faulty every time I pumped or breast fed my babies. But you have to get it out of there or you’ve got a painful situation on your hands! After his initial comments about such chaotic density, the radiologist said everything looks fine. Gosh, did we really need to sit in that private room for all this? I got up and left, happy to dodge this scare. The woman who’d led me to the dressing room asked a man at the checkout desk to schedule an MRI. I asked why an MRI, since my mammogram was fine, and she mumbled something about high risk. Wait, me? I ignored my confusion and instead requested the first available appointment and to get on the cancellation list. I snagged the only one they had, four days later at 6:45am. 

I had an MRI before back when all this breast drama started up in November of 2019, but experiencing how particularly thorough this new place was gave me a reassuring level of comfort, that this hospital is sparing no detail, turning over every stone so I’ll continue to turn up “normal.” Friday came and I was up at 5 to leave by 6. It was quiet in the lobby except for a few patients waiting for their own scans. Wonder what they’re in for? Since MRIs are loud, you get headphones and your choice of music. I went for my old standby, classical. No sooner did they slide the headphones on than Pachelbel’s Canon in D began. Always floods me back to my twilight wedding, walking down that beautiful outdoor aisle passing smiling friends and luminaries along my way. The technicians worked efficiently, and I was heading home in 45 minutes. 

Busy in my kitchen later that afternoon, I got a call from my radiation oncologist. She asked, had the radiologist already called me? Uh oh, I’ve heard this kind of call before. Cut to the chase please, I thought impatiently. “Ms. Greco, the radiologist saw some areas of concern on your MRI and wants to schedule a biopsy.” First off, my brain is screaming, area(s) PLURAL? You have got to be &#$@-ing kidding me?! And then it moves on to the OF CONCERN part, concerning it its own right. I had noticed a little pea sized nodule during my daily breast massage but assumed it was just knots left behind from surgery and radiation. After radiation ended in April, the radiologist had suggested I daily massage the tissue to keep it from forming too much scar tissue, which I’ve done.

Alas, this was no dream and I was told they’d be calling soon to schedule my return for another MRI + biopsy + mammogram. Great way to start the long weekend. Ugh. I got scheduled for that following Friday, a 7am appointment, with arrival at 6:30. Another early morning, but nothing like getting it out of the way. 

Thankfully between our house renovation and chats and visits with my boys and my own endless internet research on breast nodules four months post radiation, fat necrosis, and any other topic which resembled my situation, the week ticked along fairly quickly. 

Up early again for the MRI and arrived to find another handful of people socially distanced in the waiting room. I got registered, my hospital bracelet, etc. and was escorted to the dressing room. As with the previous MRI, I had an IV inserted in my arm so they could inject a contrast dye, which improves image quality. I got my choice of music again and this time I thought, let’s change it up. I asked for something calming but not classical, and the nurse suggested nature sounds, so nature sounds it was.

My nature music started with water sounds and soon my brain went to our recent plumbing situation with camellia roots wrapped around our pipes and toilet and adjacent tub filling with water. After the plumbing fiasco (which we resolved) I moved on to stiller waters and imagined my sister and me canoeing on Lake Lanier, like we did as teenagers. Our oars cut the glassy water as we maneuvered into coves, the mature adventurers we were, now out of view from our parents we’d left behind on our sailboat docked in its slip. As I lay masked on my stomach, the doctors slid me in and out of this machine, instructing me over and over to stay completely still. I’m guessing they felt they must repeat the instruction given how much I talked at the outset, thinking surely this motor mouth wouldn’t put a lid on it and stop moving in order for them to get their work done. But as the kind nurse told me afterwards, I was a real trooper. It must have been nearly an hour that I was on that table and somehow, I didn’t move at all.

After my water music segued into crickets and other summer night insects, I noticed a little half moon shaped light below near the floor or maybe on the table I was on. It looked like the Morton salt girl’s umbrella, complete with curved J shape below for its handle. As I was wheeled in and out of this machine never knowing when they’d move it out or back in, I was reminded of one of my favorite Six Flags rides, Mo Mo the monster, when the guy working the ride spun me around extra times since I was the birthday girl. I decided getting zoomed in and out of this machine was instead a fun ride, plus I had the benefit of summer bugs and the Morton salt girl for company.

Once the biopsy began, the nice nurse – the one who gave me the warm robe and told me I was a trooper — began holding my hand. I remember when a nurse at an earlier biopsy last year began lovingly stroking my calves. This nurse held on to my hands and I realized how good that felt, especially these days when we don’t get to hug anyone except those we live with. I needed that touch so badly and while my left hand was holding on to the emergency ball they give you to squeeze in case you need them to stop, I found a few fingers on my right hand joining her hand with my right to communicate an extra, this is so nice and I feel loved, message. Because I had been numbed, I didn’t feel them jostling and twisting to get this suspicious mass during this core needle biopsy, yet I could tell it wasn’t simply a pulling on a syringe but a turning motion as if wrangling a cork out with a corkscrew. Weeee! I got wheeled back in again and more loud MRI knocking noises harmonized with the summer bug sounds, and I was back out. A final jostling to insert a pin, another marker to light the way for the next person doing my scan, and in and out several more times, and it was done.

Next on the menu was a mammogram. Freshly bandaged, I was promised this mammogram was of the gentle variety. Having not had one since my initial diagnosis in November (and since subsequent surgery and radiation), I didn’t realize how much it was going to hurt since the former surgical site was terribly tender, and now fresh from the biopsy, it was a lot. As I was pressed into a pancake again, the blood started coming, smearing the glass. My wandering mind went to a hilarious sketch years ago with Dan Aykroyd channeling Julia Child  boning a chicken, blood spurting up and down onto the bird. Instead of high-pitched Julia gasps, this technician was calm and simply wiped it away. A few more images from a few more angles and I was left to wait while she met with the doctor down the hall. She returned with news he was pleased with the images, and off I went to check out.

The nice nurse who’d held my hand handed me off to a gentleman at the exit desk, telling him I’d had a biopsy. He couldn’t hear her, so he whispered, as if trying to simply mouthe it, “She had a b i o p s y ?” lest the folks in the waiting area learn my situation. I felt this strange cloud of shame and sadness waft over me. He told me in a quiet sympathetic voice to enjoy the holiday weekend. I uttered a “You, too,” and got the hell out of there. Once home I had to take it easy which for most people means lie in bed and rest. I had to realize that paperwork, dishes, laundry and dog walks could wait and that I could actually lie in bed and rest, which is exactly what I did, icing the area 15 minutes every hour on the hour until bedtime. The biopsy site stung so that kept me still and thankfully my 13-year-old dog was content to stay put on the kitchen floor, slinking in and out of sleep.

The doctors told me I’d hear results by Tuesday or Wednesday, and it was an interminable five days. Wednesday came and went and nothing. I had decided it’s ludicrous that I would be the one with that unfortunate case of a recurrence a mere four months post radiation. No matter the new diet, ridiculously slight alcohol intake, stepped up exercise, mine was an aggressive little bugger that could withstand chemo and radiation and emerge with a renewed, Please ma’am may I have another? annoying verve. My sister tried to convince me I’m not special that way. I felt a bit like a criminal, like I was being punished yet couldn’t understand my crime. I figured I had a 50/50 chance and felt like over the weekend they’d rustle up a public defender – a la My Cousin Vinny – and the next week hopefully I’d have some semblance of a case ready.

Now it’s today, Thursday, and I couldn’t stand the silent house any longer, so I left for the hardware store, where I tinker from time to time, just like my dad used to. I love it there because it’s small, there’s plenty of interesting merchandise, and people are ready to help you find what you need, answer any questions you might have (except the What do you think will come of my biopsy? variety). Found some flowers on clearance to replace my tired zinnias and was loading them in the car when the phone rang. An unknown exchange, certainly not my doctor’s office, but I answered it anyway. On the other end of the phone was a smiling Brenda’s voice, which exclaimed: “Hi Mrs. Greco, I have good news for you, as I know you’ve been waiting. We got your results in and it’s only scar tissue. So we won’t need to see you for six months.” I literally said, “God Bless You” and thanked her profusely. If you can hug through the phone, then that is what I did. It was heartfelt and I’m certain Brenda felt it. I love that Brenda. 

These were the perfect segue into fall AND they’re yellow. (win win)
Covid-19, Nature

Sunday Service

Susan Greco

My grandparents moved down to Vero Beach, Fla. years ago, leaving behind their lives as New Englanders to become Floridians. My grandmother’s tanned wrinkly knees, breezy summer shifts with a Kleenex tucked in one sleeve, and her wide brimmed straw beach hat are as clear to me today as they were each year we visited. She and my grandfather walked the beach many Sunday mornings after their strong and stout black coffee, sectioned Indian River grapefruit halves and English muffins spread with butter and apple jelly, and of course after breakfast was cleared and the dishwasher loaded. I don’t know if they chose to walk left or right, left toward the big pier that extended way out into the water or right toward the swimming hole with the big step down that rose up to a sandbar where the water suddenly was ankle deep. Either way, they found their rhythm of how they wanted their Sundays to go and they kept to it religiously.

Some days I don’t know what I’ll get, what mood I’ll be in, how I’ll perceive the day ahead, but as my sister and I mused, you just wake up and walk into whatever is waiting. Yesterday was a collision of too much: a toxic mix of worry, restlessness and overwhelm, and the only fix was to get out of the house. These days nowhere feels safe, not even home.

You just wake up and walk into whatever is waiting

My son who today was supposed to move into his college dorm recently tested positive for Covid. He’d spent some time with a friend who later learned he had it, and so my son got it too. Thankfully he had just three days of mild headaches after which his symptoms disappeared. His doctor said per CDC Guidelines he can end his quarantine ten days after his first symptoms appeared, which will be Thursday of next week, so thankfully he can move into his dorm then in time for classes, two thirds of them virtual, which begin the following Monday. On Friday, my husband and I drove in separate cars the 45-60 minute drive to Newnan, Ga. where we both took drive-by rapid Covid tests and learned we’re each negative. Despite these positive negative results, you can still analyze symptoms, phantom and otherwise, to death and believe me, we have. Joe thought maybe his throat felt heavy and I decided my sense of smell was fading, waking each morning to sniff the vanilla extract, perfume spray bottle or jar of peanut butter, the latter rather unpleasant pre-coffee. In reality, we don’t have symptoms and each day we wake up without them is in anyone’s book a small victory.

Thank God for large drafty houses. We are living in separate rooms and I’ve chosen to be on an air mattress in our parlor, and am noticing that the early light breaking through these 1880s bay windows is heavenly. I’ve taken over the downstairs bathroom and after eleven years here have finally broken in its enormous claw foot tub. Those quiet morning baths, that southwest facing bathroom, with dappled light streaming through its two windows, has become church for me. There’s a fireplace opposite the tub and when we’re through renovating this glorious place, when these miserable Covid times are behind us, we’ll enjoy decadent fireside soaks.

The early light breaking through these 1880s bay windows is heavenly.

For months now the world has been consumed with this virus, and knowing it’s here in my house walking around inside in the form of my son has left me itching to stay away, unnatural for a mother to self-assign to home’s far recesses or even further, outside them. It’s both ironic and unfortunate that these last few days with him home I’m having to stay more separate than ever. Maybe like quickly ripping off a Band-aid in lieu of its slow painful removal, the universe is making our separation easier by having it abruptly start now? Certainly not intending to make him feel like a leper – and he doesn’t –  I can’t cut any corners, not when doctors look at me with their knowing eyes and tell me that early results show that cancer survivors don’t seem to fare well with Covid. Excuse me? Not even trying to define “well,” just trying to stay alive. We all are.

It’s unnatural for a mother to self-assign to home’s far recesses.

No circle in these concentric circles in my inside world and outside it feels exactly safe, yet home I am realizing is where I am. I feel strong and can move and walk miles and miles. Yesterday I left and with mask in hand and on face whenever there was anyone in sight, and with no particular destination in mind, wandered all around Decatur – through the cemetery, residential neighborhoods and downtown. Walked four miles and some change and with AirPods tucked inside my ears, strutted straight out of a ‘70s music video, moving through the entire Billy Joel’s Turnstiles album and on into ELO’s greatest hits, finding comfort in something familiar from a simpler more predictable time.

Joel’s Summer, Highland Falls is one of my favorites. Fast flitting piano juxtaposed with a ribbon of melodic rambling vocals felt perfect. He wrote it after he’d returned to New York after many years away when he was living outside the city near, you guessed it, Highland Falls. The song speaks to the highs and lows of life, it’s either sadness or euphoria. We are always what our situations hand us. Perhaps we don’t fulfill each other’s fantasies. We stand upon the ledges of our lives with our respective similarities.

 It’s Sunday and as I lie here on my air mattress, now slightly lumpy from hours of air slowly seeping out, I clutch my Target mug, strangely comforting albeit mass-produced, with its colorful floral “S” initial and shiny gold handle, filled with that sacred first and only cup of coffee. I’m soaking it all in, this day, this life, the changes that are coming. This moment feels like my church, and it’s offering lessons and bringing comfort. With so many unable to return to their own churches, I am wondering where or how are you finding your church, your soothing Sundays?

I’m soaking it all in, this day, this life, the changes that are coming.

Growing up, we were required to attend church every Sunday, and unlike my grandparents, my parents didn’t stray from that traditional script and wander into nature on Sundays for nourishment. I think we need to wander there in order to return right back home, back to ourselves.

Stay safe and look for love and comfort wherever you can. It’s still there under all the rubble, which increasingly will clear away. I’m leaving you with music from a Sunday I will always keep close to my heart. I was in New York with a dear girlfriend and as we walked through Central Park, this haunting celestial music pulled us in, blanketing us all and moving me to tears. Amazing Grace.

 

 

 

 

 

 

 

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

Hurry Up and Wait

Susan Greco

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

Susan Greco

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

Susan Greco

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