breast cancer

Gone viral

The spotted bananas were on the verge of turning black, another accelerating situation spiraling out of control. To halt their decline, I made muffins and luckily found an opened bag of chocolate chips, a must if my younger son is going to eat them too. Once cooled, I arranged them on a cake pedestal, instinctively worrying they were too close to one another, before reason kicked in: The muffins do not have Covid-19, are not Coronavirus carriers and can touch if they want.

IMG_7337The days are bleeding into each other, and the pets are confused. Glad we’re home 24/7, but still, they give us that, “Why are you all here, like ALL the time?” look.  I’m not their cruise director, but even with full bellies and exercise, potty breaks and unlimited adoration and attention, their eyes say, “What now?” I think we’re all asking that same question, despite thinking we should be cleaning out closets, learning a new language, taking up piano, and scores of other things we swore we’d do if only we were home and had the time.

The days are bleeding into each other

IMG_7415I’ve become a TV watcher. Savannah Guthrie and Lester Holt are my AM and PM bookends, with CNN occasionally running in between. It’s been interesting to see the reporters in their own homes, no longer TV personalities, but real people with imperfect homes and clutter and regular morning faces. Dr. John Torres typically broadcasts from his entry way with his coat rack behind him, a bicycle helmet dangling on top. Is he the cyclist or his kids, if he even has any? Al Roker greets us from his kitchen, sometimes juggling the weather with kids’ breakfast duties. Savannah Guthrie speaks to us from her basement, and even without the benefit of hair and makeup staff, she looks great and you realize those things no longer matter. Miguel Almaguer comes to us from his living room. Where did he find that gorgeous tufted blue sofa behind him? As if that matters during a pandemic, but it’s clear he chose that room to speak to us from for its stunning sofa.

IMG_7370Last night an Oral B commercial caught my eye and made me gasp. Their electric toothbrush’s brightly colored bristles were spinning fast in concentric circles. They looked evil, like the Coronavirus. Everything does now. When life resumes, I’ve wondered if artists will play with the virus’ form and its signature spikes, or just let it go, burying this bad dream, without trying to make chicken salad from chicken shit.

We are social creatures and being asked to isolate goes against the grain. We have an exam to take, one that matters more than any before. We are way behind, and haven’t even bought the book, yet now find ourselves scrambling to get the Cliff Notes. Staying home could mitigate umpteen lives lost and with lives vs the economy in the balance, wouldn’t saving the former save the latter? The doctor’s daughter in me is inclined to heed the advice of our surgeon general and chief immunologist. Especially faced with something for which we have zero immunity, zero safety net, and when our hospitals are about to bottom out on PPE as they wrestle with a berserk mutating virus which has for months zigzagged across the globe.

The Coronavirus Task Force is updating us daily. Recently Dr. Fauci has been noticeably absent. When he’s not there, I can tell it’s going to be more of the same rhetoric, the VP telling us all his “wartime president” boss has done (and I say that in quotes because while he’s slightly stepped up his game in recent days, it in no way compensates for the years of self-absorption, lack of curiosity with anything not directly benefiting him, and the culture of division he’s fostered), each time reminding us of the unprecedented halting of flights from China and Europe. The impressive resume continues with this and that and when POTUS himself moves to the mic, you never know what you’re gonna get, like this eye rolling gem: “I’ve lost biyuns and biyuns of dollars being President. I’ve got lots of rich friends. We inherited an obsolete broken system.” Yes, and your inauguration, with doctored crowd photos as proof, was the largest attended ever. It was perfect. Like that conversation. Like all of it.

You know when you’re in a relationship that you know is failing and you need to leave, yet you’re still in it and now everything, including voice intonations, is bugging you? This guy’s stress on the second syllable of industry is just wrong. It’s a multiple times a day occurrence, and each time I cringe, correcting him in my mind. “Our inDUStries. We want inDUStry to do well.” And just so we’re clear, Peter Alexander is not only a wonderful reporter, I’ll wager he can correctly pronounce INdustry.

In an effort to offset my news consumption, I’ve finished a few crosswords and watched an old movie, idle 2+ hour distractions for the pets too who are more than willing to curl up next to me. It feels cavalier, the juxtaposition of me home idling my time while doctors and nurses are scrambling to stay afloat, risking their own breath to sustain others’. While it’s a paltry donation, as we’ve heard over and over, staying home IS contributing.

I’ve learned hospitals have resorted to cancelling some cancer treatments and surgeries. This virus is hitting everyone hard, but for someone about to start radiation for breast cancer, this news is particularly alarming. Despite a week’s delay, as of now, my radiation treatments will start next week, though things could change. Following yesterday’s simulation, I’ll go 21 straight business days, smack dab in the middle of Emory’s and many hospitals’ crises. Maybe like flying after 9/11, being in a hospital is one of the safest places I can be? I am relieved and fortunate that I can still get these treatments.

Staying home IS contributing

IMG_7414Yesterday I walked to Emory, criss-crossing the streets weaving around a few scattered people. We waved so there was a friendly vibe, but the distance was palpable. I found a stick on the ground with which to press the elevator buttons. You feel the virus everywhere. At the entrance to Winship Cancer Center there was a friendly crew asking you why you’re there, if you have a fever or cough, etc. There was tape on the floor demarcating the 6 ft. distance from reception where you need to stand. I stood even farther back. During my appointment, my masked and gloved radiation oncologist offered me gloves to use for signing paperwork, lest Emory’s pen be a conduit for the virus. Everyone I dealt with wore an N95 mask except the nurse educating me on RT side effects. I began rolling my stool away from her to get more distance and she asked if we were good, and I told her I’d like more like 10 feet between us. I felt I was being rude, yet if I catch this thing, my treatment could stop, and I can’t afford that. None of us can afford to catch it.

I worry about people waiting for surgeries or on medicines in short supply or facing eviction or hunger, and countless other things this virus has brought, or worsened. Those with mental health issues, low on companions or medications or hope, and businesses, some in families for decades, wondering if they’ll ever reopen. Marriages already struggling before this mandated togetherness took hold. First time parents who can’t together witness their baby’s birth, moments you dream about but won’t get back. This spring’s college and high school graduates, my own son included, likely robbed of that hard-earned moment, parading in cap and gown with family cheering on the sidelines. People who can’t be with their loved ones who are dying or lonely or both. Doctors and nurses and truckers and grocers and teachers, who like us, have never seen such times, yet who deliver their best every day.

None of us can afford to catch this thing.

I hope people will listen and stay home and our connection with each other will strengthen, despite our distance and these hardships. A friend recently admitted her frustration at a Facebook post along the lines of things happen for a reason, there is good that will come out of this and maybe the universe did this on purpose so we can all reset. She personally knows people whose businesses are deeply struggling and for her and them, there is no silver lining. I keep looking for the good because my brain keeps resorting to try and fathom the layers and layers of depth of this distress, and it just can’t. We all are managing in our own way and we are all in this together.

Be well. Wash your hands for 30 seconds. Keep hand sanitizer in your car, and use it after you go to a store. Don’t touch your face. Stand 10 feet away from people. Outside don’t touch anything, not stair rails, light poles, building doors, nothing. And then go wash your hands again. Did I say don’t touch your face? xoxoxo

IMG_7269
Someone shared this on social media and I don’t know and therefore can’t credit the artist.

 

 

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

Hurry Up and Wait

IMG_7129Friday I did my big bell ringing 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 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 who also still 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 angel Pedialyte-delivering friend made, and then it went downhill from there. I glanced in the refrigerator door and there they were: Keebler fudge sticks. I’ll just grab one of those. What’s the harm? Then I had another. Those flesh colored chocolate dunked cream filled innocent sticks. Divine. Like I used to eat at my grandmother’s at her apartment off Peachtree Street. Always kept in the refrigerator. Later my husband came home and as I hadn’t shopped we had breakfast for dinner. He made bacon. I haven’t had a slice since November and I pinched a little off one. They were well done and cooked in the oven. Crispy, no fat, the no nitrite kind. Innocent, right? So good. Then I had a whole piece. Oh my, the food of the gods. I can’t love stuff like this but then I remembered my oncology nurse said once, if during treatment you want mac ‘n cheese, just have it. She didn’t mention what to do when the urge for fudge sticks or bacon strikes. I’ve decided no more fudge sticks and as for the bacon thing, maybe once a month I might have a slice. Surely that frequency can’t kill me? I just didn’t want to love it so much, but it was the best I’ve had. Like ever.

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

 

 

 

breast cancer, connection, Health

Chemo crash course

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

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

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

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

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

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

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

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

Who needs a reminder of these days?

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

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

You can control how you roll on this “journey”

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

Did someone dilute my orange juice?

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

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

Water helps every cell in your body function better

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

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

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

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

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

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

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

xoxoxo

 

breast cancer, Health, self care

Homestretch

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

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

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

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

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

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

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

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

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

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

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

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

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

Maybe it’s all downhill from here?

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

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

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

Grateful and sending love. XO