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.
Stopping 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.
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.
Returning 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.
I’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!
Why 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.
I 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.
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.
On 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.
Nurse 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.
Re 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 me with 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 because 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.
Up 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.