Uncategorized

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.  

 

 

 

Uncategorized

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

 

 

Uncategorized

C like cat.

As I made my appt with my medical oncologist last week, the scheduler on the phone gave me directions to Emory’s Winship Cancer Center, my close by radiation site. I couldn’t hear her well as she said the name of the place, so she reminded me it’s “C,” like cat. How nice that she shares my not benign way of talking! And how interesting that all of a sudden, I can say things like my medical oncologist, my radiation oncologist, when just a few short weeks ago I didn’t have any of these people in my world. But I don’t believe it feels quite the same as if you could say my pool guy, or my tailor, or some similar luxury person one might afford and for affectation sake feel inclined to refer to. I’m not showing off, really, but I can say I have my team, which of course includes me, and I’m confident we will all be taking excellent care of me.

So many refer to this path or journey I’m on, but I need to look at it differently. Imagine your fridge is packed to the gills and one day you discover there’s a moldy lemon way in back. You remove the lemon of course and notice it has released and left some juice and pulp and mold behind, clouding up your glass shelves. Now everything in the fridge must come out and you wipe down the entire fridge with hot soapy water, removing the shelves, the drawers, the butter dish and the door compartments. Next you assess all your fridge contents and decide what to keep and what to toss. Finally, you get a strong bleach cleaner and do a final wipe of the entire fridge, inside and out before putting back the contents. My little not benign mass was that lemon (of course way smaller) and I’m now getting ready for the bleach cleaner treatment.

If I were to call this my path or my journey, which we all know it is, it would feel like mine and mine alone. Referring to it that way, for me, makes me feel separate and I’ll admit a tad lonely, because it sounds more like I’m moving down some road, leaving all familiarity and friends who have stayed behind on land to continue doing their normal things, without some path switching up their plans. I picture Tom Hanks in the movie Cast Away taking his beloved Wilson along on his homemade boat as he set out on the big blue sea watching familiar land in the distance get smaller and smaller. I don’t want to be on that boat leaving what I know. Nor do I think I have to.

Instead this experience from Oct to date for me is rather a timeline. You remember the history timelines from grade school? Where there is a horizontal line and big round bullets popping up along the way, and vertical lines extending up and down from them with notable events and their dates? I’m on this timeline, having moved through a slew of significant dates already. I’ve got more ahead, but at some point, you get to the end of the timeline and no, I’m not talking about your own demise, but the end of the events which have made up this moment in your history. Later, you can step back and look at all you moved through and remember all the waiting between bullet points, wishing the next one would hurry and happen already, and how all the wishing in the world didn’t change the rate at which you reached the next bullet point.

I’m in that waiting mode now. Waiting on the Oncotype test results from the tissue they removed during my lumpectomy which will indicate how likely this strain of not benigns is to return. There is some numerical risk value this result will bring and I understand scoring 26 or higher means a greater risk for which they bring out the major artillery. I should hear next week and this value will chart the course of my treatment, tell me whether on top of radiation I also will need chemo. Not even sure the order I’d get them in either, if in fact I do need both. I’ve thrown a ridiculous amount of anxiety at this possibility and worried myself into tears, an unlimited stream that easily comes out of nowhere and which I’ve let run its long and winding course each time, leaving my eyes puffy and watery.

I’ve decided to hold on to a few positives, however: my dreams over the years have been quite telling. As horrible as this may sound, the night before my mom died I dreamed that she died. And what do you know, the next day she did. I had dreamed this dream once before earlier in her emphysema illness, but this second one I guess took. Certainly not my doing, but I found it interesting that it popped up in my dreams just the night before. All this said, the other night I dreamed I got my results and I only needed radiation, and the strain of radiation recommended would be super easy and manageable, and before you know it, I’d be cruising toward the end of this timeline, ready to daily pop that estrogen blocker pill I’m to go on for five years. I woke up in a hopeful mood, with less puffy eyes, and my outlook was energetic and largely normal. As if that weren’t enough to boost me, the next day I found a penny on the ground, heads up, which if you’re even mildly superstitious you might know is good luck.

My results will be my results. I will do what the doctors recommend, because while medicine fascinates me, biology is the only class I’ve ever failed, and so I’m not going to even begin to know any better or second guess these doctors. That poor biology grade was pure laziness on my part as I refused to memorize all the parts and pieces of these amazing bodies of ours, refused to put in the enormous hours required. Whatever course of treatment I am prescribed, I will keep moving through my timeline, and continue to move forward, checking all these things off my list. Of course, I would love this treatment to be easy and not make me feel or look bad, but in the end, I’ve got that gleaming refrigerator waiting for me at the finish line, and c’mon, who doesn’t love a cleaned out fridge?