Health, Uncategorized

It’s Just Hair

IMG_6707I’m in the thick of it. No, not suddenly showered with the thick tresses I’ve wanted my whole life, but rather I’m in the thick of chemo. The twitching eyes, the mouth threatening to develop a sore if I don’t swish with mouthwash thrice daily, and then there’s the hair, which now resembles a Charlie Brown Christmas tree. With each step around my house, its needles fall, and it seems the tree’s trunk has weakened and bent over.

Just this morning I submitted my third patient support ticket to the Dignicap folks inquring what I can expect as I’ve been diligently wearing their cold cap during treatments. Certain they’re sick of me, sick of all the questions, like a child incessantly asking, “Are we there yet?” But I need answers and their experience to settle me down. Seems I’ve lost at least 50% of my hair at this point, with most of the shedding occurring last weekend. Even though their literature warns this will happen, with only half of my treatments behind me, if the shedding continues at this clip, I can’t imagine I’ll have a head of hair left by my final chemo blast February 28. It’s uniform at least and has thinned out symmetrically, though I find myself stepping lightly so as not to loosen any more strands. Shhh, don’t wake the hair! Crazy how obsessed I’ve become. My doctor thinks since I still have hair at this point that it will remain, and despite his words, I’m not completely sure.

Shhh, don’t wake the hair!

baby hairWhy does our hair have to be such a thing? I was born bald and by all accounts a plenty cute and happy baby. Yet as my hair grew in as full sheets of cornsilk and as I grew, like many girls, I don’t think I appreciated what I had. My hair was whisper thin, though to its credit a bright natural blond, and over the years I grew to love it, especially since I didn’t need to color it, but for the two times I did foils just for fun. All my life, my hair’s sleek softness, shine and spirit has wrapped my head and shoulders in health and bounce and in some ways, I suppose I took that for granted, assumed it would always be there, a pretty veil covering the nape of my neck.

I don’t think I appreciated what I had

These days, I pull my hands around my hair and realize the scant covering I now have, an oily few strands deep extending over my scalp which plays peek-a-boo when a little wind or head tilt reveal the sparsity. I know this is temporary and I know these drugs are doing what they’re supposed to do. They attack fast dividing cells, which are both the malignant ones and the ones affecting your hair, and digestion, too. It all makes such sense on an intellectual level, but I feel self-conscious even going to the grocery store at this point, though thankful that the weather is cold and I can wear a hat indoors. I bought a second bucket hat, camel corduroy, another option for ducking in and out of stores, hopefully unnoticed.

susieI feel a tad guilty about this vanity realizing I am lucky I’m even alive since my jarring discovery just three months ago. Still, I can’t wait until these drugs are done doing their thing and my hair and body can return to doing theirs, return to how they were, but that much stronger and better. Good hair days sure can carry you, help out a shabby wardrobe, dulling makeup, a bad mood. But good health, like a tall towering tree trunk, has the power to lift you like nothing else.

 

 

connection, Health

Half Time Show

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

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

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

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

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

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

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

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

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

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

 

 

 

Grace, Health

25% there!

Last Friday, I received the first of four chemo treatments I’ll get over the next two months. It’s strange to willingly drive to a place where you know they will inject you with poison that will drip through you for several hours, and that you’ll repeat this drill every three weeks over the course of your treatments. Yet it is this very poison that will help you. Sometimes we all need a complete detox, even if it’s a tox that’s doing the de-toxing.

scrubbing_bubbles_logoI’m receiving this custom infusion by two very Special Agents C & D, initials of the chemical agents I’m receiving, Cyclophosphamide & Docetaxel, helpers, like Dr. Seuss’ little Cats A, B, C and so on. These agents are cleaning me through and through — picture Dow’s scrubbing bubbles, an infusion of Mr. Clean’s strength cut with Mrs. Meyers’ love.

I’ve been outfitted with a Dignicap, for which we must pay extra, which is a recently patented fitted head cap that fills up with cold water and then ice, down to 3 degrees Celsius, designed to protect your hair follicles, nearly freezing them from chemo’s harsh effects. Joe and I both agreed the name could use some improvement, because surely we all have dignity, with or without our hair? Still, I’ve had 56 years with mine, so I want it to stay if it will. To help the cap perform at its peak, the Dignicap folks suggest you wash your hair no more than once a week, so looks like Fridays are my hair washing day. I feel quite good except for the oily separating hair that is getting darker and flatter by the day from the lack of shampooing. It’s just hair I remind my vain self, yet I will continue to protect mine down to the last strand.

carol channingI should know in the next three weeks if I will experience typical shedding which is expected even using the Dignicap, or full on hair loss. I’ve already got a call into a Piedmont hair expert and based on the recent photo of me that I sent her, I’m a candidate for her synthetic wig titled “California Dreamin.” All I can picture is Carol Channing for some reason!

Added to the scalp chill during treatment is the ice water I’m soaking my fingers and toes in. Chemo can give you neuropathy, that tingling hands and feet are asleep sensation, and from what I’ve read, sometimes it hangs around long after treatments are over. One way to counter these effects is to, as with freezing your hair follicles, ice your fingers and toes during treatment. Thankfully just one of my two “medicines” creates this neuropathy, so the icing only occurs during that single hour after which I can hunker down under a blanket and warm up for the second hour of chemical drip.

IMG_1259

This was my report from the infusion room yesterday: Got my cool cap on today and did the finger and toe icing (to prevent neuropathy). Then got under a warm blanket for another few hours with cooling cap.  Feeling good. Thx for all the positive vibes. Got home around 4:30 and went on a half hour walk with Lucie. Joe and I are heading out on another walk. Glad to get it behind me. The cold cap seemed to work because when they took the cap off, my scalp literally had ice on it! So maybe it’ll work? Keeping fingers in ice 75 min was harder than the toes, bc I wore surgical gloves vs thin socks on my feet. Took some 30-45 sec breaks, though. Had a tiny bit of neuropothy in my left foot for like a minute a bit ago, so maybe that is typical, especially so soon after treatment. All in all a good day. 25% behind me!

And the second update the day after: I’m feeling fine esp given that two chemical agents dripped through me yesterday 🙂 They put you on steroids for three days to cut down on water retention and help an anti-nausea medicine work better. Feel quite energized today which is to be expected. Going to make pasta sauce and clean up around the house. Yesterday walked 1.5 hrs which felt good. Going to keep that up daily. Walked a brisk walk for an hour today. Super energized with the steroids. I’m supposed to begin to feel the effects tomorrow or Monday which last 3-5 days. I asked if there were big spikes with side effects that I could expect – like would I out-of-the-blue projectile vomit while grocery shopping? – they laughed and said it’s more like a flu-like malaise. But added everyone is different. With anti-nausea meds at the ready I don’t expect to have that. Then apparently I should feel back to normal until my next treatment on January 17, and I repeat this cycle through four treatments which end Feb 28. The hand and feet icing for 75 min was “challenging” but I took a few breaks. Hoping for zero neuropathy and today have had none. Also these drugs can make nail beds darken and sometimes I read that nails just peel off! Icing also keeps this at bay so I’ll definitely do it each time.

IMG_6382Someone asked me if chemo is loud. Maybe she was picturing wails from patients as harsh chemicals surge through them, or loud machines chugging to push sloggy liquids through the lines. It’s hard to describe, but it’s none of that. You’re not worried sitting there. Or I wasn’t. And no one looks sickly or anything. There is a quiet kindness in the air and the room is pleasant and airy with big windows offering views of Atlanta outside. Only discomfort was icing my fingers and toes but I took breaks. Otherwise you’re just sitting in these super comfy chairs that recline, nicer than any nail salon, with an IV in your arm. Joe brought his laptop and we went over some house ideas – talked about fireplace details. We brought lunch from home and ate it there. It was almost kind of fun, in a day date sort of way. When the place cleared out, they even let him hop in a comfy chair to stretch out.

It’s New Year’s Eve and I’m wondering if any effects will show up. So far there have been just a few: I could feel the start of a canker sore in my mouth but I’ve swished with baking soda and salt every day and thankfully nothing. These chemicals leave your digestive tract a bit sluggish, and mine has been no exception. My left eye lid has developed a sporadic twitch, most likely my body’s way of saying, wtf? I’m guessing my white blood cell counts are starting to drop as I’m told they will. Yet I’m not finding dry,  itchy skin, bleeding gums and nausea, or the boatloads of other gruesome things the Internet promised. Goals for 2020: stop researching side effects on the Internet!

I’m thankful I’m still here and rolling into the new year with my Special Agents C and D, who will be with me through late February, after which they will take on new assignments. I am grateful and humbled and healthy, and I can’t tell you how much I appreciate all the love and support.

 

 

Uncategorized

Winter into Spring

I woke today and the room had that winter white cast that only December brings, the kind that feels new and especially pretty when a blue sky or red Christmas bow cut through it, when its shadows criss cross the bed over sleeping cats. It’s December 21, the shortest day of the year and the longest night, the most darkness and the least light. There is much about this day that suggests one should bundle up and go on a brisk winter walk, look around, take stock and breathe in the day with every sense. Or this day might call for a lazy nap, a pot of chili simmering on the stove, a pile of books by your side.

For me, this day was neither. It was just a day. I’m beginning to see how normal and ok regular ‘ol days are. I had a few plans but otherwise didn’t feel its magic. Didn’t step out into it in any real way to experience any shift, any movement out of darkness and into light away from this mood that has been lurking in the shadows for weeks.

I didn’t want to write another blog about my health or my worries, and instead hoped I’d find inspiration elsewhere. But this darkness culminating in this darkest of days has mirrored my days of late. I hope tomorrow’s light will cut through it shredding it into bits that erode into nothing. I didn’t mindfully breath deep today. I just breathed.

In the flurry of recent appointments, today I forgot and then I remembered. I forgot about the big picture as I stayed busy these last 7 weeks moving through milestones and biopsies, scars and scans. Today I remembered the treatments I’ll start December 27th and then the break I’ll get in April, then the other treatments after that and the medication beyond. I remembered the happy that took hold when I learned about things like negative nodes and margins and how I thought surgery marked the end and the beginning, the end of worry and the start of healing. I rejected the journey and instead made it a timeline. It was behind me and everything was ahead.

You don’t know what you don’t know. You don’t know how you’ll fare tomorrow in Atlanta traffic or if a bus will run over you. You don’t know if you’ll have success with the last items on your Christmas list or if time will run out, the store will close and you’ll come up short, having to change your plans and instead of little gifts you’ll find yourself at an ATM out of ideas withdrawing cash. You don’t know if after these treatments, this invader and his growing list of friends who felt welcome to burrough inside you will return. As if you were robbed and you fortified your locks, installed an alarm, hid your jewelry and now you can either roll on, knowing you’ve done all you need to do or stand still and wonder, frozen by what ifs.

For the last two weekends I travelled, first to Chapel Hill and then to Ann Arbor, two great college towns hosting holiday parties for my husband’s company that I each gifted with a pink pen I’d picked up at my appointments. I couldn’t carry those pens, carry all that pink ink. Those pens needed to leave my possession, my state even, and reside elsewhere. I made my husband leave them at hotel reception or the restaurant where we had lunch. Someone else can pick up those pens and have that hot potato in their hands. Someone else probably won’t view those pens as I do. They will find use with those pens, use them as the tools they are.

Today I felt it, the heavy road I’m on, a dread I’m feeling in advance of the nausea, a dry run of the dry heaves, a dress rehearsal for treatment. It felt large, it felt useless, it felt endless. I’ve got to return to my timeline and instead check off days, treatments, milestones. I can’t look ahead because five years out and then ten can’t come soon enough. I want to be cured and have all this in my rear view mirror, but the road is still in front, long and winding, unknown and unseen. 

Tomorrow a friend will help me begin to learn how to meditate, a key tool in the toolbox I will need for now and for later, a tool we all need if we’re going to navigate choppy water and have it not feel so rough, or paddle in still glassy waters and be able to fully experience that velvety calm. And then I will see a friend and we’ll share a meal. And after that, who knows what. Like a child on a trip, I keep asking am I there yet, and the answer never comes. But the lack of an answer is an answer. I’m not there yet, none of us are. We are moving forward, together, and with ourselves. 

Today has now shifted into tomorrow which begins the start of longer days. I’m reminded to keep moving, and as I drive out these cells, I must walk out of my own cell, and be free. Breath deep. Begin where you are. You are enough. The sunshine is ahead even though you can’t see it. Spring is coming.  

 

 

 

Grace, Health, hope

Be Positive

It’s no wonder I was given this B+ blood type, not only as a moniker of how I hope I am deep down, but as a benchmark of how I’d like to be, especially when meeting challenges.

It’s Friday the 13th, and for those who are superstitious, it’s a day when bad things happen. OR you could look at it differently as I am, as a day when IF something bad is going to happen, it might as well come out of hiding today and show itself and let ME decide if it is as bad as IT thinks it is. Taking the veil off scary situations and staring them in the face eye to eye gives you the power vs relinquishing it, gives you control and that optimism that you know is still there, that you know still shines brightly inside you.

These last few weeks I’ve been scared of a lot. Scared my health is going down the tubes, scared I won’t continue to be my usual bubbly energetic self, scared I’ll get chemo and feel and look awful. Today, this Friday the 13th, my doctor’s office called me and I learned that I will need chemo after all to eliminate any potentially lingering not benigns, which they say are gone, but so we can ensure they stay that way.

I’d like to announce today that I’m done wallowing in all this, so please don’t you. I’m beginning a period I’d like to call my drama drought. I’m rolling up my sleeves and getting to work. All the worry and whining will give way to smiling and winning.  And it’s Christmas time for crying out loud! I’ve got so much to do and good things on my plate.

I imagine I might feel kind of lousy after I begin this treatment (dates tbd after I meet with my oncologist one week from today), and while my beautiful hair might need to go dormant during this winter, like a lovely zoysia lawn does, I am still here. I’m as me as I ever was, and I am going to move through all of this happy and healthy, and with boatloads of “Be Positive” bright red blood coursing through me.

Just my update for today. I like thoroughness and this Friday the 13th, while a smidge disappointing, did its part, lived up to its reputation, delivering a full-on badass Friday the 13th. But just so we’re clear, I’m the bigger badass, so there.

I’ll close with Happy Friday, because it still is and I still am.

xoxoxo