If you ever have to go through chemo or know someone who is or will be, here is a little primer, based on my three treatments so far, with one still to go. I can’t say these symptoms and solutions will necessarily be the ones you or your friends and family experience and go to, but they helped me. And I certainly hope you don’t have to deal with this or know someone who is.
ORAL CARE / Floss: Your teeth will not fall out! (despite what the Internet might suggest) Just turn into a flosser, if you’re not one already. I was one before all this, and I have continued the habit. No point dealing with bleeding gums on top of everything else. There’s a nice floss out there, Glide Pro Health, Comfort Plus floss. Not cheap, but worth it. Rinse: a few days after treatment your mouth will feel strange, like you’re getting a canker sore or like you burned your tongue. Just rinse with salt water or else an alcohol-free rinse, like Biotene, or both. If you don’t, you might get a mouth sore, making it unfun and uncomfortable to eat. People are going to want to bring you food, and you’ll want to enjoy it. With each bite you can taste the love that went into making it.
People are going to want to bring you food, and you’ll want to enjoy it.
DIGESTION / Chemo attacks rapidly dividing cells — cancer cells and also cells in your GI tract. To ensure you don’t get constipated, keep a few things on hand and begin using them the evening right before bed after each treatment. Two things: Smooth Move tea (I know, whoever named this concoction made sure you get the idea). Brew a cup per the box instructions and drink it before you go to bed. Miralax – stir a packet in some water and also drink before bed. I made the mistake of taking these during the day and after my first treatment it took four days to get the digestive plumbing working again. Don’t make this same mistake! After my second treatment I decided to read the directions and took them at bedtime. Worked like a charm and I just needed to take them once and my digestion kicked back in until my next treatment when I repeated these drinks.
SKIN / The Internet will assure you chemo will make your skin super dry and you’ll have rashes. I haven’t found this to be the case except on my arm each time a few days after getting treatment where the IV was inserted. My hands are dry, but it’s winter and I do lots of dishes, so my skin is typical for this time of year. I keep lotion on hand and use after showering when my skin is damp. I’ll admit my face looks paler, but I also wonder if I’m looking for symptoms where there might not be any. I’ve got a powder bronzer that helps bring some life back. The cancer wellness program at my hospital offers loads of classes including one for skincare and makeup. Other than wearing some eye makeup and lipstick when I go out, I didn’t feel like going to some class to help camouflage my paleness or whatever tips they have on hand. I know these are likely useful and I love that they offer all this support, but I’m still not wanting to band together with others dealing with this too. I imagine I will at some point, but for now, keeping a low profile. I’m trying to operate as if this is as minimally invasive as possible, which we all know it’s not, but finding normalcy helps me.
I wonder if I’m looking for symptoms where there might not be any.
NAILS / Before my first treatment I read some people’s nails peel off during chemo and their nail beds turn dark. My doctor advised against getting a manicure or pedicure during this time, mostly to lower risk for infection if your skin should get cut. Also, they suggested I wear no polish so we can keep tabs on my nails. I’ve chosen to ice my fingers and toes during the first hour of chemo treatment when they administer the more toxic of the two drugs, and that has kept my nail beds normal and healthy.
NEUROPATHY / The stronger of my two drugs which wrecks your hair also brings peripheral neuropathy to your fingers and toes. You’ve likely experienced tingling in your hands and feet when they’ve fallen asleep. Chemo damages nerves outside your brain and spinal cord and your hands and feet take the hit, bringing neuropathy during treatments and sometimes beyond. If you ice your hands and feet during treatments, you can avoid this, and I’ve been doing it each time. Despite the tough 90 minutes, and also having to lug an ice chest, ice and trays with me each time, I highly recommend icing and avoiding one more symptom that could linger. Who needs a reminder of these days? I’d like them behind me as soon as possible.
Who needs a reminder of these days?
HAIR / Let’s be honest, these days will not be ones you look back on fondly as good hair days. If you’ve managed to keep some or all of your hair, the hair that remains has gone through hell. It’s tender, like a baby’s, and prone to shedding, breaking and thinning. Interesting that my body hair has remained. I bought something called Latisse which you brush on your lashes and brows, and so far those are still there. I have been using a silk pillowcase on my pillow at night which is supposed to promote less friction for your hair. Additionally, I use a gentle baby shampoo, Burt’s Bees, with very few ingredients. Because I’m using a cold cap with each treatment, I’m washing my hair just weekly vs every few days. The idea is deal with your hair minimally, use a wide toothed comb and comb just once a day to avoid matting. Also, no using hair bands, blow dryers, dry shampoo, or anything that will make you look better. Today I woke up and looked in the mirror and saw a gorgon, you know those repulsive women from Greek mythology with snakes for hair, who had the power to turn anyone who looked at them to stone. I don’t have these powers and my tender scattered tresses don’t really look like snakes, but the crazy bedhead I got this morning with strands going this way and that brought these gorgons to mind. Can’t say I’ve embraced these crappy hair days, but knowing they are temporary helps.
HEAD COVERING / I went back and forth on this. First I was getting a wig when my wrecked hair continued falling out. Then I learned a wig would heat up my scalp, pull on my hair and cause friction – all things contraindicated during cold cap cooling. So I’m going it alone, hanging on to the hair I’ve got. It’s scant on the sides, revealing my skull underneath the cross hairs, such that I’m not comfortable uncovered in public. I bought several pre-tied head scarves, but I’m no spunky fashionable Rhoda Morgenstern and don’t look great in them. She had the cute outfits, the large hoop earrings and great makeup, plus good hair underneath to boot. And I’m hanging around in yoga pants not wanting to call attention to myself. So instead I sport a baseball cap to accessorize my yoga pants, or when I’ve ramped up to black jeans or something nicer, I’ll go with a cashmere beret or corduroy or cotton bucket hat. I line them with a silk scarf so my hair gets a break. So far it’s working out. It’s interesting that I don’t want to choose the scarves because I don’t want to stand out or let strangers know what’s going on with me. I’m not ashamed, but in my effort to move past this, I’m keeping my cadre of supporters small, because why alert the masses and dump this news on more than is needed? Soon this news will be old news, treatments will be done, and I’ll roll on keeping kale in my fridge and baby shampoo in my tub, and no one additional will be the wiser. They say with this diagnosis with so much you can’t control, you can control how you roll on this “journey”, including how wide you let your support system swell. This feels about right.
You can control how you roll on this “journey”
DIET / Before I started treatments, I had visions of having a queasy stomach, like I did when pregnant, and not being able to figure out what I wanted to eat, what would go down easy and stay down. Chemo in these respects has been easy. I still like to eat most things I always have – but desperately miss Trader Joe’s frozen lamb vindaloo, General Muir’s reubens and Shake Shack’s double cheeseburgers – and haven’t found any foods I can’t stomach. I’ve indulged some, birthday cake when my son turned 18 and four straight days after, and have a new fascination with Pepperidge Farm chessmen cookies with a tablespoon of Haagen-Dazs vanilla. Thankfully the bag is almost out and I’ll fall back in love with kale and cauliflower and such. I’m reminded by my doctors, everything in moderation, so occasionally I will indulge again. I have noticed as treatments have progressed, the bizarre taste in your mouth or perceived texture on your tongue is ever present, so in that respect some foods don’t have the full flavor they once did. Did someone dilute my orange juice? Again, I remind myself this too shall pass.
Did someone dilute my orange juice?
NAUSEA / Other than after my second treatment which actually was an allergic reaction to the nasty chemicals surging through my veins and which resulted in severe nausea once home, I haven’t experienced nausea. After my initial treatment I made sure to take anti-nausea meds at night for two nights, just in case. I think chemo meds have come a long way and seems mine don’t bring this on thankfully. But having nausea meds at the ready is huge, and knowing you’ve got the tools to outpace potential side effects gives you peace of mind.
HYDRATION / They say you should drink lots of water normally and seems that’s true with chemo too. I believe the amount is roughly half your weight in ounces of water. I know before each treatment excessively hydrating has helped my IVs go smoother. Drinking plenty of water helps every cell in your body function better, and at a time when you’ve got chemicals destroying many of them, seems the remaining healthy ones could use all the help they can get.
Water helps every cell in your body function better
EXERCISE / As with hydration, exercise just makes good sense. My oncologist suggests I factor it into as many days as I can. Admittedly, I do it in spurts and when I do it, it’s walking for now. I’d love to get back into running but giving myself a break because some days when I feel shrouded in chemo ick, that weird malaise where you’re certainly not bedridden but just feel trapped in your own annoying skin, I can’t imagine pounding the pavement. Yesterday I walked with a friend and we did a dry run of walking to Emory where next month I’ll start radiation. It’s 2.8 miles each way, and we wandered around Decatur too, ramping our miles up to 6.8! Feels good to move and knowing it’s so good for me only compounds the goodness.
CONNECTION / I can’t underscore this enough. My family has supported me as have my friends. I’d like to not be consumed with this situation, these treatments, etc., but for now, I am. It’s my full-time job. My husband is being particularly patient and kind, and my kids show their concern and support too. Friends are reaching out and this contact reminds me I’m on their minds. Despite the ick some days bring, this feels particularly wonderful. It’s as if this big weight on your back is getting carried by others for a bit and you can lighten up some until you carry it again. It also helps to write this blog and explain this situation, both as a record for myself and to give details to others.
LOSE THE FEAR, FIND THE LOVE / I used to wonder what people going through this felt like, and I’ll admit I felt scared seeing someone who obviously is going through this, with their pale face, bald head or missing hair on their scalp, lashes or brows. Maybe they felt like hell outside or in and it took all they had to get themselves up and out to Target or a coffee shop or wherever, and that frightened me for them and I suppose now in retrospect, for myself. Maybe I was scared their days were numbered. Interesting to now appreciate that a bald head does not on its own indicate that at all (much like a kids’ snotty green nose does not indicate he is at the height of contagion). All that does is scream, hey, I’m in treatment. And that’s absolutely ok, good even, to get help with drugs that get the job done. It says nothing about your diagnosis, chances of recurrence or overall health. It simply means the drug you are getting in your treatments is wrecking your hair, like so many of them do. The people you see are still the person they were inside, or as them as they can be after such a diagnosis, and I’m still me, but with shitty hair.
This diagnosis and treatment has surprised me in how symptoms come and then go. After a treatment you have roughly a week to ten days where you don’t feel quite right, and after that in the remaining two weeks before treatment, you begin to feel increasingly close to normal. And then comes a new treatment and you are flooded back into the shock to the body with its eye twitches and weird tastes and all. And then with your last treatment you get to climb out of these cycles and with each passing week your body will begin to reclaim itself. I can’t wait!
What has surprised me most is how long this all drags on. I naively thought boom! Lumpectomy done, clean margins and lymph nodes, a little radiation and I’m all done! Yet it’s as if I’m on a road trip from Georgia to California and for weeks, I’ve been stuck in Arkansas peddling my Fred Flintstone car and going nowhere. We are going but sometimes it seems we are standing still, too. I think by now I must be coming on New Mexico, a beautiful state I’ve driven through. California is on the horizon and then this leg of the road trip will be done.
What has most surprised me is how long this all drags on.
If you know anyone going through this and think these tips might be helpful, feel free to share. I’m assuming my last treatment will be uneventful yet likely will write about it too. Until then, sending love from New Mexico.
xoxoxo
Next 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.
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. 
Returning home, I walked into the kitchen to the most divine smell. 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 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.
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 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.
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 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.
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.
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.