breast cancer, connection, Health

Chemo crash course

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

 

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