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, 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

 

 

 

 

breast cancer, Health, loss, self care

Flying High

Some days take a turn for the better and seems it happens when you’re not still looking. Stare at a day all day and will it to change and what do you get? The same day you started with. Get out, make plans, busy yourself with something other than that day you weren’t thrilled with and what do you know, you have a new day on your hands.

Yesterday I was sitting at a counselor’s office – the free one you get with the diagnosis – bemoaning the fact that I’m terrified of losing my hair not helped by the fact that the wig lady at the hospital doesn’t have any openings in the near future. Folks, the hair is dying on the vine, ready to drop at any moment, and this girl needs a wig. Stat. Hearing my frustration, my counselor told me of another place. I got up, dried my tears and called them on my way out. Within a half hour, I heard back. They could see me within the hour.

IMG_6716Stopping for fifteen minutes to inhale a few fish tacos at my very favorite westside hole-in-the-wall, I next found myself in their chair trying on the only blonde wig in the room. It’s got bangs and is cut bizarrely short, yet in its defense, it’s just a demo for color and fit, both homeruns. With it on, even with my own frayed dying rat tails for hair dangling underneath it, I felt oddly good, like someone had wrapped a warm, high quality blanket around me. Yes, I realize with this “do” you could call me Florence Henderson, give me a fried drumstick in each fist and send me off into my own Wessonality commercial, but the real wig’s hair will be longer and by the time it comes in, my own dead hair will be history. I feel bad for it as it’s tried so hard to hang in there with me and stay in the game, but it’s just had enough. We knew chemo kills hair and we were right. IMG_6718

Yesterday was a roller coaster ending on a high note meeting this woman who will help me finish out this hair chapter. I went to leave and she asked for a hug, like a mother pretending she needed it, but knowing it was me who did. She also had some health thing years ago and knows firsthand what it’s like to be on a hunt for hair. Not just hair, good hair.

Today I woke up with a plan. Feeling the dreadlock clumps my hair has morphed into, barely hanging on yet now void of any life, I up and ordered the wig. Check. Later on I had tentative plans to see a movie with a friend, which I kept, and we ducked into the dark theater, each with our own bag of popcorn. Decadently perfect. I felt so normal to be carefree and out at the movies with a girlfriend. I am normal.

IMG_6725Returning home, I walked into the kitchen to the most divine smell. And saw this. Another friend had said she’d make me a pot of her lovely kale white bean soup, and here it was, lovingly prepared, marvelously delicious and still warm, waiting for me in my refrigerator. Who gets this? Evidently, I do.

I’m beginning to trust how this all works. We inherently want to help each other and just need to know how or on the receiving end, need to trust that others will prop us up when we most need it. Need to ask them to and then let them. We can’t begin to presume how a given day will go, and there are nice surprises in store when we stop giving a day the reins and sit back only to watch it paralyze us. When you let people really see you, the sky’s the limit as to what you can accomplish, what you can give and what you can receive.

Lean into people if you need help, let them know how you’re stuck and what you need. We’re not here together to just fly solo when some days call for an entire fleet of copilots. Because sometimes there is turbulence.

 

 

 

 

 

 

 

 

 

self care, Self reliance

Help Yourself

For as long as I can remember, I’ve practiced caring for others. My own self-care, as we call it today, amounted to brushing my teeth and bathing. As a child, I ate the things I liked that were put before me, typical meals of pot roast, spaghetti, or fried chicken, with white rice, buttered noodles and corn. The boiled to death cabbage, lima beans and peas I would put in my napkin, excuse myself from the table and head to the powder room to flush them down the toilet, or try to go unnoticed and feed it to the dog under the table. We had loads of other stuff in the house too, none of it checking the self-care box: Fruit Loops, Ritz crackers, fun size Milky Ways, 2-liter bottles of Sprite and root beer, and King Dons. If you were feeling particularly adventurous, there was maraschino cherry juice to wash it all down with, from the jar in the fridge door. My exercise in high school amounted to playing on the tennis team, swimming in summer, occasionally jogging and generally running around, thinking and talking quickly, tightly strung like the tennis rackets I owned through the years, the Wilson junior valiant, Miss Chris and Chris Evert Autograph.

But enough about me. Back to the others. Hold the door, write your thank you notes, pass the (insert whatever is on the table) and then you can have one. Certainly, good manners are important to observe, but I think with the overt nudges from my mother, this practice went deeper. The idea that you always bat last was seeped into my soul at a very early date. It’s a wonder I was born before my twin, instead of letting him go first. Maybe he was a gentleman from the get go, and instead held the door open for me, insisting that his sister go in front.

It seems all the shoulds were always swirling in my conscience, with my mom running down her list before or even in lieu of ever asking me about me. Did you do your homework? Set the table? Make your bed? Clean the ring in the tub? At the end of every bath we’d sit in the tub, still full of water, bubbles now burst, and shake Ajax on a small sponge and as instructed, scrub the grimy tub ring surrounding us. Ingenious on our mother’s part, because who likes cleaning tubs? I look back and wonder if she ever took stock of the day for herself or her family, past the to dos. Was the day good? Or did you struggle? Are you making friends in your classes? Did you do anything interesting today? Would you like to talk about it, or can I do anything to help?

As a little girl I had a sudden, isolating bout of insomnia. Most nights I could hear my family one by one drift off to sleep, all of us upstairs in our house, and I was left wide eyed, lying there awake, which of course branded me the first one a burglar would get. It didn’t matter that we were never burgled, or that we had a 110 lb. German Shepherd who would protect us; it was forefront in my mind. I begged my sister to teach me how to fall asleep and, like the rest of the family, she shrugged her shoulders and said, “You just lie there and it happens.” Like swallowing or sneezing, the practice was automatic, and it worked every time for everyone, pets included. Everyone, except me.

My dad decided that a few nights each week the two of us would go on walks before dinner, several miles to the end of our street and back. Early on in our regimen, all the walking caused whatever was running in my head to stop and join me and also drift to sleep. I loved these walks, just the two of us, where I felt special and cared for with no siblings along, and loved him doing something just for me.

Later, there were the couple of years when I was the last child in the house, the other two now off to college, one graduated. My parents were divorcing and had been sleeping in separate rooms. I used my mom’s bathroom in the mornings to get ready since it had a grownup vibe and a drawer full of makeup: a bottle of Revlon tawny beige foundation, but no blush, blue eye shadow and the skinniest silver tube of mascara. My Bonne Bell lip smackers tinted gloss completed the look, and the mini Susan Woody went out into the world.

Occasionally in the bathroom I’d see notes taped to the mirror and one time found a message scrawled directly on the glass in lipstick in my mom’s handwriting, which read, I will not be your scapegoat. I had no clue what this meant, but knew it wasn’t a sexy love note between my parents. This marital anti-bliss vibe ate at me, and as a result, I ate too. I’d cook a Stouffer’s macaroni and cheese after eating a full meal and eat the whole thing, or I’d grab an entire stack of Chips Ahoy cookies from the cookie jar, and then tear the plastic off a package of lady fingers and dive in, or nosh on fun size candy bars chewing the nougat and caramel, feeling it coat my teeth. All the tennis playing and wired-ness I possessed couldn’t offset this eating, and I began to want to purge myself of these binges.

One night while my dad sat in our den in his wing chair drinking Budweiser from a can and reading The Atlanta-Journal, as he did most nights, I asked him what you give kids who have swallowed poison, that thing you take to throw up. He asked me again what I was talking about, eyes still fixed on his paper, and when I repeated my question, he replied, “Ipecac.” “Can you spell that?” I asked. He did and I wrote it down.

Thus began a new chapter of self-care, one of eating and purging. I had chalked it up to my desire to stay thin, but it dawned on me just a few years ago that this bulimic season in my late teens occurred at precisely the same time as my parents’ separation. I don’t remember all the details, but I do know it was unsettling to see my sister’s bed unmade each day, knowing she hadn’t surprised us by coming home from college, but rather my dad slept in there. Or to come home from school late after tennis practice to find the house quiet, my plate of dinner warming in the oven, my mom in bed for the night. It was eerily soundless yet the house was perfectly neat, the fridge full and pets cared for, as if invisible elves were tending to all these things, while my mom stayed largely out of sight.

I’m not sure if it was the silence screaming loudly in our big house or the tawdry lipstick note, but this tense undercurrent didn’t sit well inside me. The self-care I chose was the only way I could control something, a way to give me the best of both worlds: eat comforting foods but not let them show. A little swig of Ipecac, my private salve, and no one would ever know. Thankfully it only happened a handful of times and then I stopped.

My self-care practice has gotten much better, and if I am going to continue to improve, there are three things I must remember:

1) What you eat stays with you, assuming you’ve dropped the propensity for purging, and you should choose good things, not the comfort foods from tv or grabbing your attention in the grocery aisles. The truly good for you comforting ones are those you’ve known all along, the things you adore, like home grown tomatoes, sweet potatoes, roasted chicken and grilled fish, or a really good meatloaf. Salads you can tell were made with care with soft washed lettuces, avocado, grated carrot, thin cucumber slices, sunflower seeds, too. Homemade bread and eggs scrambled with cream cheese and snipped chives, pasta carbonara with whisked egg yolk, sugar cured bacon and plenty of parmigiano reggiano cheese, or steamed haricot vert with a little butter and salt and cracked pepper. Strawberries dusted with powdered sugar and a splash of balsamic vinegar, a fistful of bing cherries or a plump satsuma orange at Christmastime, its cheery leaves in clusters at its stem.

2) Exercise flattens anxiety, your stomach too, and builds bone. There are the walks too, no longer with my dad, but with my dog in my neighborhood, or the long ones you take at the beach, wet sand underfoot, pelicans overhead diving for dinner, soaring over the sea. There is jogging and 10K races that leave you feeling strong with a smile on your face that lasts days. There are your bones, exactly 206 of them, which carried you into adulthood and will still carry you if you work them, move them with the earth under you, walk, run and lift, each time pushing yourself to do more.

3) Sleep is delicious brain food and like exercise, cuts the edge off a bad mood. My insomnia has all but gone and I am a good sleeper, rarely waking even during two pregnancies. Our bodies know what we need and if you’re like me and falling asleep in front of the tv and can’t get through a show, or at the kitchen table with dishes still to do, or worse, on the stair landing where you stopped to sit for just a minute, you ought to get yourself to bed. All these things that you do, that you work at, that you keep up, all of them will wait for you when you are ready. And you’re ready only after you’ve cared for you.

It’s easy to defer to your factory default setting and focus on everyone else, but in adopting this holy trifecta of eating, sleeping and moving, you can reset and shift back to you, where you’ve always been all along. As Anne Lamott so brilliantly put it, Lighthouses don’t go running all over an island looking for boats to save; they just stand there shining.

I’m not sure why these obvious, common sense things — which all of us learned out of the gate — have taken decades to sink in, but I’m encouraged to finally realize that self-care begins with self.

IMG_8398
Me, circa the early ‘70s, modeling my new go go boots.