Chemo Tips for Cancer Buddies

cancer_card_by_patchSince I was diagnosed with Breast Cancer in March 2015, three women I know have joined the sisterhood. Two of them found it early enough to get by with surgery plus radiation, but one is about to embark on a few rounds of chemotherapy. She reached out to me for advice and I realized that I actually do have some. And since I’m ostensibly writing this cancer junk for fellow cancer peeps (what? do I call us “patients” “victims” “sufferers”? If you’re currently in treatment are you a “survivor”? What about my friend that beat Stage 2 only to have it metastasize three years later in her lungs, brain, and bones? Is she a “former survivor”? Because you can fight and hold off and delay, but ladies and gents, you don’t survive Stage 4), I do believe it is time to bust out my…

CHEMO TIPS FOR CANCER BUDDIES!

  1. Say goodbye to your hair. Don’t listen to anyone (hi Mom) who suggests “Maybe you won’t lose your hair!”. You’re going to lose it. You can cry about it, you can turn it into a party or you can do both. Most people shave their heads when they reach some point of critical wispyness. It’s a matter of taking charge; of doing instead of being done to. Each of my three kids plus my husband had a go at cutting my hair and then using the clippers. And it was fun. It actually was. I believe it really helped my youngest (age six) deal with the way Mommy’s look was changing. I’d imagined a sobbing breakdown once I got a good look in the mirror, but that didn’t happen. It turns out my skull is rather nicely shaped. My Dad reports that my great-grandmother upon meeting me as a baby declared my head “perfect.” IMG_1884
  2. Embrace the bald. Try out crazy wigs. Enjoy hats. Go straight-up cue ball. 99% of the time I keep covered up so as not to freak people out, but if I need special treatment or consideration somewhere I have absolutely no shame about whipping my hat off. You just don’t say no to Chemo Girl. Also, enjoy the benefits of bald. Take super quick showers! Save money on shampoo, conditioner, unguents and elixirs. Take back all the time you won’t be blow-drying, hot-rolling, or flat-ironing! No more bad hair days, baby!

    Rocking the chrome dome during Round 3
    Rocking the chrome dome during Round 3
  3. Embrace the other bald. Enjoy smooth never-need-shaving legs and armpits (remember the quick showers I promised you?). Two more words: Free Brazilian.
  4. Be selfish. Seriously. You can do no wrong right now because you have cancer. You won the Lottery of Suck so you get to take long naps, avoid housework, bail on social engagements, not sign up for shit at the kids’ school, hog the remote, hog the covers, eat the last cookie, and just let everyone else deal with “stuff.” I mean, don’t be a dick. Just…act like a dude for a few months. (Kidding. Sort of.)
  5. Invest in Imodium and flushable wipes. The chemo-shits are bad, yo. You are going to poop like you have never pooped before and your little butthole is going to beg for mercy. So do yourself a favor and baby your bum. I’m serious about the Imodium, too. Keep some with you at all times.
  6. Don’t go to chemo alone. Remember all those people that offered to help when you announced your cancer? Now is the time to take them up on it. Choose someone to accompany you to each round of chemo. Someone to pick your ass up at home, drive you to the hospital, sit with you and amuse you, and then drive your ass back home. If you’re very popular you can have them do shifts. Chemo takes a long-ass time. I planned to do a bunch of stuff during chemo (sleep, do my nails, read), and ended up doing none of them. I chatted with my friends and the nurses, munched on snacks, played with my phone. You know what? I had a good time. I laughed a lot. Take your friends and host a chemo party.

    Me and Amy. Best friends since 1973!
    Me and Amy. Best friends since 1973!
  7. Be a wuss. Look, for no reason at all you drew the short straw and got cancer. You don’t have to be a tough broad or a good soldier or a warrior woman. All you have to do is GET THROUGH IT and you’re a rock star. So don’t try to keep doing PTA shit when you want to curl in a ball and cry. Curl in a fucking ball, girl. You deserve a good cry! If your heart races and you get the cold sweats changing the sheets on the bed? STOP. Sit the fuck down and let someone else do that shit. You have cancer. Or sleep in dirty sheets, who cares! What’s the worst that can happen–you already have cancer! Honestly, here’s a secret. When you have cancer people are required to be nice to you. They’ll tell you you’re beautiful when you look like a damn gargoyle and they’ll tell you you’re brave when you’re a blubbering puddle of self-pity. People don’t judge the cancer-striken. They just thank fuck it’s not them.
  8. Say goodbye to food. If the nausea don’t get you, the chemo-taste will. Food will, for increasingly long periods of time as your chemo progresses, be the enemy. You won’t want to eat it, smell it, or have anything to do with it. And yet it will become your prime obsession. Because you know you need it to rebuild your good (non-cancery) cells, and you haven’t eaten anything except for a raisin in three days. So all day you will ponder this ponder: What could I eat? What could I choke down? Strolling through the aisles of the grocery store can help here. If something catches your eye, take it home. Take three or four or a dozen “maybes” home and try them. Something that was fine last week might be a no-go this week, so keep trying. Chicken broth and dill pickles were the only thing that kept me alive during the back half of chemo. dill pickles
  9. Find what works for you. Now is not the time to try and “power through” anything. If you hurt, take a pain pill. Your doctor will give you the good ones because people don’t fuck around with cancer patients. If your nausea meds don’t work, try another. Try ginger candy. Try pot. Try acupuncture. And if nothing works, just keep reminding yourself that this is not the rest of your life. Chemo comes to an end.
  10. Make friends with chaos. You’re the one that keeps the trains running, right? Who makes the appointments and keeps the social calendar and is the organizer and the arranger and the scheduler and the cleaner-upper. Well, the trains are going off the rails. People will try to “pitch in.” But your immediate family is suffering too. They aren’t running at full capacity either because they’re worried and trying to be strong and crying when they think you’re not looking. So. Do you want to spend 4 or 6 or 11 rounds of chemo feeling like a failure watching the laundry pile up and the homework get left behind and the mess accumulate everywhere you look? You do not. This is where that laminated Cancer Card comes in. You play it and you play it hard. Mostly, you’ll need to play it on yourself. Your bones ache from the bone-marrow booster shot you got to keep your white count from plummeting. Is this a good time to mop the kitchen floor or scrub toilets? It is not. Sit the fuck down, pull up a blanket or a pet and watch a Law & Order: SVU marathon. You can clean your house when your body isn’t involved in chemical warfare with a deadly disease. smile and nod
  11. Smile and nod. Don’t kill. People are going to suggest things to you that will make your blood boil. That refined sugar gave you cancer and that your penchant for peanut butter cups is tantamount to a deathwish. That supplements or prayer/positive thinking or Corn Nuts are more effective at killing cancer than medicine. That drinking smoothies and eating lean protein will help you feel energetic through chemo–never mind that you can’t drink water without gagging. Don’t argue, don’t punch them. Just smile and nod. They do mean well.
  12. Connect with cancer buddies. Find people who have been through it or are going through it. Because they are the only ones who understand what this feels like. And they aren’t the ones sending you emails about how you gave yourself cancer by drinking soda or living near power lines. They won’t change the subject when you talk about being afraid of dying. You can tell them how you REALLY feel, not just “oh, fine.” They won’t discount your aches and pains or try to “solve” you. They get it. Find these buddies and keep them close. And when you’re past this shit and you’re a “survivor” reach out to the newbs and be there for them.

Next time: Chemo Tips for Family and Friends.

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Chemotherapy 5 of 6 – The Darkness Before Dawn

high-five2Five rounds of chemo down, just one left. It’s a triumph, yes? But, wow….this is a bad one. Here’s the thing: actually getting the infusion of drugs isn’t bad at all. They puncture my flesh exactly once to access the mediport in my chest and then it’s all okay. They draw blood to make sure I’m healthy enough for chemo, and I go see Dr. Cap while we wait for results. For Round 5 I was all dolled up in this fabulous new wig that my dear friend (and cancer survivor) Lisa sent me from New Orleans. I was feeling good, I was feeling on top of the world. My daughter Callahan went with me and my baby brother came by for an hour or so. I’d even brought a butter and brie on a baguette sammy from Belle Pastry in Redmond. I also brought two dozen chocolate macarons for the staff.

I reluctantly told Dr. Cap that neither of the new meds (Prilosec for heartburn and Scopolomine patches for nausea) worked. “I’m not trying to be a pain in the ass,” I told him. He insists I’m not a pain in the ass, which if you know me, reveals his true superhero status. He asked if I’d tried acupuncture. He’d given me the card of a person who specializes in acupuncture for chemo patients during the last visit, but it had apparently flown out of my head as so many things have. So, I still have that left to try.

He also told me that he was adjusting my dosage–lowering it by 5%–to compensate for the weight I’ve lost. I lost weight (and probably it’s mostly muscle) because I’ve been unable to eat. It’s not some accomplishment of mine, so I can’t either take credit for it or be proud, but I won’t pretend I’m not slightly thrilled. I can see my ribs again. I have cheekbones. I cannot recommend chemo as a weight-loss method, but…it’s definitely a Cancer Perk.

Chemo round 5 selfieBesides the rad new wig, I wore a t-shirt and skirt and my cute Coach sandals that I spent too much money on the last time I was in NYC but have given me total return on investment in happiness and compliments. A woman accompanying her husband to treatment told me, “Look at you and your hair and your outfit. You’re gorgeous!” “Well, you’re my new favorite person,” I said. “I’d be here in sweatpants with no makeup if I wasn’t taking an official Round 5 selfie,” I joked. Also completely true.

Across, on the other side of the suite I saw a woman in for her very first round of chemo. She was alone and she was afraid. It was sinking in, the reality of what she was up against. I saw her cringing as they accessed her brand-new medi-port. That shit sucks big-time. I told her that this first time is the worst and that it gets way better. I told her that chemo goes fast and that I was on my fifth. She smiled weakly and told me I looked great. I wished I could go sit next to her and hold her hand, but I was plugged into my own business on the other side of the room. I don’t know what kind of cancer she has or what stage it is, but no one should have to go to their first treatment alone. If anyone tries to tell you it’s okay, they’ll be fine, don’t believe them. If they won’t accept a ride, show the fuck up and surprise them. Cancer, for all the good intentions and sweet gestures, love of friends and family and care of doctors and nurses is fucking lonely. Really lonely. And the only people who really get it are people who have been through it or are going through it. Anyway, her chemo was over before mine and before she left I wrote my name, phone number, email address and blog URL on a piece of paper with a note inviting her to call me or text me day or night if she needed someone to talk to. She hasn’t used it, and frankly I probably wouldn’t in her place, but I felt compelled to do it, as so many many women have reached out to me. I feel very strongly about paying forward the kindness that has been extended to me in the last few months. And that’s got me thinking some pretty big thinks about how I want to spend my life. But that’s another blog post.

So, after the first-timer had left the infusion suite and I settled in with my final bag of healing poison, I realized that I had given her the wrong URL. Of my own goddamn blog. I know exactly why, too. It’s CHEMO BRAIN.

031011_NF_FEAT_AbsentMinded_feat4This is something that doctors don’t really talk about. Probably because it’s hard to quantify. But people who have been through chemo will tell you: the struggle is real. At first it’s sort of funny. You know, in an absent minded professor kind of way. “Derp derp, where are my keys? Oh! They’re in my hand!” Cue laugh track. But then, after accumulating all these killer drugs in your system? It stops being funny at all. Sure, I wander into the kitchen and forget why I went there. I lose my phone several times a day (And pinging your phone from your Apple Watch is worth the price of the device in my opinion), but lots of people do that. Struggling to remember the correct word when I speak happens a few times a day. It’s very frustrating. The other day I got panicky because I couldn’t find my brand-new glasses that I’d just spent a fuckload of money on because I love my optometrist more than I love being in-network. I know I took them to Disneyland, and had a terrible thought that I’d left them on the table between the beds in the hotel room. I didn’t have my contacts in, which didn’t help my seeking endeavors, but I pawed through the backpack I’d taken to Disney and the little bag I’d used at the park. No glasses. I wander around the apartment asking my husband and daughters if they’ve seen my new, white, glasses case. Or failing that my old glasses to assist me in my search. Everyone says soothing things, “It’s okay, we’ll find them. Why don’t you sit down and we’ll look for you?” I’m almost in tears because I can’t see and I’ve lost my expensive, beautiful new glasses and I’m fucking stupid and useless. Gunny found them in my backpack. The one I’d just searched. “But I LOOKED there,” I told him, blinking back tears. “Sweetie, I know, but that’s why I looked again. You have chemo brain. It’s not your fault.”

And finally this.

IMG_2625On Tuesday I took my daughter to her summer day camp at the daycare she attended when she was younger. Then, I went to the bakery to order a pie for a Jon Stewart farewell party. As I came out of the bakery feeling all YEAH I’M PRODUCTIVE! GETTIN’ SHIT DONE! I see white paint on my car. And my heart just sank. Because I know I did it. But I don’t remember doing it. And I probably wasn’t aware of doing it at the time. It’s not car paint, so I obviously cut it too close pulling out of or into some parking place next to a wall or a post. Remember last round when I wondered if I was okay to drive? Apparently I am not. My situational awareness just isn’t what it needs to be. And so I’m not going to drive for a while. Which makes me feel like a fucking invalid.

wood sage sea saltAnyway. Round 5 is the worst yet. I had hopes that because the dose is a smidge lower maybe it would be better. And I had lunch with friends the day after chemo and the food still tasted good whereas the gross taste kicked in on Day Two last round. On Day Three I took my littlest to her swimming class and then took her to Kohl’s and then Target so she could pick out some new shoes and jammies (hellooooo summer growth spurt!). So I was feeling optimistic. But then Day Four hit really really hard. And hasn’t let up much. The nausea, I’d say, is ten times worse this round. And the extreme sensitivity to smells is 50 times worse. What I refer to as my Super Sniffer has driven me to spend entire days in my bedroom with the door closed, window open and fan running because someone cooked eggs in the kitchen. I’ve even tried putting perfume on my upper lip so I smell wood sage and sea salt instead of whatever makes me want to puke. It’s mostly food smells, but today I was repelled by the dishwasher detergent. It’s Day Eight. I should be a little bit better by now. I can’t even stomach chicken broth. I don’t feel hungry, but I imagine my body needs more than the 110 calorie pudding cup I can choke down occasionally. (Just tried it. Nope. Not gonna work today.)

Soooo, that’s all shitty.

Here are some not-shitty things. In fact, they are pretty awesome.

1. My dear friend Danny Pena (known online as “Godfree”) was recently inducted into the Podcasting Hall of Fame for his trailblazing work on Gamertag Radio. It’s a big damn deal. What tore me up though? He dedicated it to me in an emotional acceptance speech that made me cry a million tears. You can watch the video here, but grab a tissue! If you ever think you haven’t influenced people in your life, or that folks don’t really care about you, get cancer. Or you can just take my word for it: you matter and people love you. You don’t need to test it. My deepest thanks to Danny and congratulations on your badass award!!!

Godfree speech

2. This conversation with Allison, age 6:

She’s petting my bald head and giving me some sweet little kisses.

Allison: Hey! I think your hair is growing back! I see tiny baby hairs!

Me: You do?!

Allison: They’re gray.

Like I say, she keeps me grounded.

3. My friend Denise and her family donated to the Susan G. Koman Breast Cancer Foundation in my name. She’s also given me other gifts (including matching mother-daughter Elsa hats!) because she’s incredibly sweet and generous but this was especially touching because it helps people. It makes progress. People will live longer and suffer less.

Allie in the Jeep

4. My husband’s Jeep. I spend a lot of time in my bed by myself feeling shitty. But sometimes–more often since we decided that I shouldn’t get behind the wheel right now–Gunny takes me for a ride in his new Jeep Rubicon with the top down and he puts E Street Radio on the satellite station. I know the Boss isn’t his favorite, but he does it for me. And with the summer sun blazing I yellsing all the Bruce songs. The real fan ones. The gritty stuff. I’m talking “Jungleland” and “Hard to Be A Saint in the City”…the real shit not radio jingles like “Dancing in the Dark” which Bruce himself now calls “disco.” And I’m as full-up with joy as I’ve ever been, belting out every single word, the wind snatching the lyrics from my wide open mouth and flinging them into the road behind us. I’m a Springsteen song. What else could you ever ask for?

 

 

Disneyland with a side of cancer

IMG_2541I’m in a friend’s Redmond driveway, ready for our kids to have a playdate together. My husband has come along to haul Allison’s car in the back of his Jeep, so she can race her friend Jacob who has the same car (in green, not pink) around their large yard. Gunny’s telling our friend about the additions he wants to make to the Jeep (which is quite new and his current obsession). I tease him, saying “Hey why don’t we use some of that money on a trip to Disneyland?” Cue awkward laughter on my part that means, ha-ha I’m kidding but not really.

“Let’s go,” Gunny says. “Let’s go this weekend.”

“Pffft.” That was a dismissive mouth sound, not a fart.

“Actually…how about next weekend?”

“We…we can’t. We’d need plane tickets and stuff.”

“You mean like these?” Gunny pulls out his phone to show me confirmation for two tickets from SEA to SNA (that’s Santa Ana/John Wayne/Orange County).

“You’re taking me to Disneylaaaaaand?” I burst into tears. Then hysterical laughter. Then a combination of both.

My husband surprised me with a trip to my favorite place on Earth. Because he wants to make me happy and he’s the nicest man in the galaxy. Here’s what happened:

The Otter Pop Debacle

This happened two days before Disneyland, but it has bearing on the trip. What happened was that I, in my wisdom, while binging on Season 4 of Law & Order: SVU decided to eat SEVEN Otter Pops. Because they’re cold and delicious and I love them.

Then, around two a.m. I began waking up every ten minutes for some super exciting action: diarrhea. This is a common chemo side effect, but I obviously contributed to the problem with my questionable dietary choice. This issue continues most of the day and is barely slowed down by Imodium.

Eventually, the well runs dry and I sigh a sigh of relief and vow to never let an icy pop cross my lips again.

D-Day

I woke up early to pack my bag for our trip. It had been the longest week on record because I was counting the minutes until Disneyland. Allison was staying home with her older sister and that was particularly exciting because she was giant asshole the last time we were there at the tail end of our cross country “victory lap” celebrating Gunny’s retirement from the Marine Corps.

My head sort of hurt and I figured some caffeine would get me moving. So I drank coffee. Big mistake. Big one. This triggered another bout of the runs, though no where in the same league as the Otter Pop Shitstorm. But it was worrisome! I mean, it’s not like you can use the bathroom anytime you like on the airplane! And then I thought about the plane that made an emergency landing because someone took a dump so foul it infested the aircraft. Oh god, I don’t want to be that person!

Gunny got home from work and I sheepishly confessed about the coffee which we both agreed was another dipshit move by yours truly. But what was done was done and I took Imodium and swigged Pepto Bismal. It was all I could do!

The Airport Run

We drop Allison at her day camp and head for the airport. I’m fine most of the way there. I’m taking tiny sips of water, afraid that too much of anything in my guts will make bad things happen. I just need to get to the airport, right? Well, about three minutes from the airport…guess what? I have to go. Like, NOW. Like clenching my butt cheeks and rocking back and forth and muttering to myself while Gunny wails, “I could have stopped anywhere!” Me: “I didn’t need to, until RIGHT NOW!” Am I going to shit my pants in the car? If I do, can I still make my flight, make my trip? I could throw my shorts and undies away and change into the clothes I’ve packed, right?

Gunny steps on the gas and drives to Arrivals. Squeals to a halt at the terminal and I jump out and RUN. He’s parking the car while I’m bolting for the baggage claim restroom. And I made it in time. My Apple Watch logs my heart rate at 38. 38 while I’m running. This concerns me. Minutes later it’s 167. But I’ve had an echocardiogram recently. My heart’s not showing any signs of damage. But I’m cold and clammy and feeling really really bad.

BVMI reconnect with Gunny, who’s got my backpack. I make a preemptive stop in the restroom after we get through security (nothing) and we board our flight to John Wayne. Until the seatbelt light turns off and the bathroom is once again available I silently repeat a hybrid incantation in my head, half prayer (the only one I know) and half something else. It went something like “Hail Mary full of grace please don’t let me shit on this airplane.”

I didn’t.

Paradise Pier Hotel

We love this place and have stayed here on three out of four Disney trips together. When we checked in, the very nice front desk clerk Ines asked if we were celebrating anything. I lifted the edge of my Roswell baseball cap to show her my chrome dome and said, “Kicking cancer’s butt.” She told me good luck and got a little misty-eyed. When we came back to our room that night, we found a signed photo of Minnie Mouse, a very sweet card from the staff, and Mickey rice crispie treats and milk!

IMG_2545 When we checked out on Sunday I saw Ines at the desk and I told her “I suspect you were responsible for the special treat in my room.” She nodded and smiled. I told her how kind that was and how much it meant to us. Disney magic is REAL, yo.

Disneyland!

I won’t go through a blow-by-blow of every thing we did, but I will mention a few things.

The first time you use your ticket (we had three-day Park Hoppers), they take your photo so you don’t pass your ticket to someone else. The older man taking our picture was from Ireland and had an awesome accent. I asked if I should take off my sunglasses and he said, “And maybe your hat.”

I made a “Uhhh” noise and lifted the edge so he could see the situation.

“Ah, nevermind,” he said, his face full of understanding. “Have a great time, kiddo.”

It was a little thing but it meant a lot to me.

I’m self-conscious about my bald head. It’s jarring to see a bald woman and I don’t want anyone–especially at Disneyland!–to have to feel sorry for me or feel awkward or anything. Right or wrong, it’s how I feel. The first stop we made in the park (after the obligatory castle selfie) was Mad Hatter in Fantasyland where the plan was to buy some ears! Unfortunately, ears just don’t cover a lot of real estate as I discovered.

IMG_2587

This just wouldn’t do. Luckily the youth-sized Minnie cap with ears fit my teeny bald noggin perfectly.

IMG_2542I was super happy with my hat. Until I went on my favorite ride of all time: Big Thunder Mountain. I just didn’t feel like it would stay on my head and so I wanted to take it off, but was ashamed of my head. Gunny reassured me that it was fine, but I still teared up a bit. I’m not sure why. The injustice of cancer fucking with my Disneyland experience, maybe? Anyway, no one pointed and laughed, the world kept spinning and over the course of the weekend I rode Big Thunder three more times and no fucks were given about my hairless state by me or anyone else. Though when I heard that Billy Corgan was spotted on the ride looking pissy I had to check the photos to make sure I hadn’t been mistaken for the Smashing Pumpkins guy. Phew.

landscape-1437777701-billy-corgan-disneyland-sad

Gunny had booked dinner at Blue Bayou, which is the best place ever. I was nervous though, because the food is pricey and I hadn’t eaten anything close to a real meal in a couple weeks. I’d been living on chicken broth for the most part. So much so that on the plane ride I’d thrust my arm under Gunny’s nose and asked him if I smelled like chicken broth. I felt like it was leaking from my pores.

Anyway, I ordered the Beef Loin Strip and it was amazing. I ate meat and I liked it! And afterword I had much more energy because that’s how food works. It’s actually fuel for your body! Did you KNOW THIS? Amazing stuff.

We watched Fantasmic in the VIP section (part of the Blue Bayou package with dinner) and then, though the park was open for three more hours I was done. I walked slow. I had to stop and rest pretty frequently. And I made lots and lots of bathroom visits though I had no more “incidents.” Or should I say “shitcidents.”

The next day, Saturday, was Magic Morning at Disneyland. If you’re staying at one of the three Disney hotels on site, you get into the park an hour early. So, we got up and had a little breakfast and headed for Space Mountain. We zipped through the minimal line, and just as we’re climbing into our spacecraft…

Uh-oh. I have to poop.

Uncle-scrooge-mcduck-36749825-1440-900So, as I lurch through the darkness, my sphincter clenched tighter than Scrooge McDuck’s fist, I’m screaming, but it’s not from joy and thrills. My mind is racing. If I shit the spaceship, how fast can I run away? How quickly can I get to the bathroom? Will Gunny be able to buy me pants at Star Trader? How will he get them to me in the ladies room? What’s Disney protocol for a Code Brown? This is not how I wanted to start my day.

Luckily, the O-ring held, and I managed to make it off the ride and into the bathroom, where I lingered so long Gunny started sending me “Are you okay?” texts.

After that, I was okay. I made pit stops between rides, but the rest of the day was super fun. I met Tinkerbell and Silvermist in Pixie Hollow, went on a bunch of rides, bought a bunch of souvenirs, and even ate a corn dog from the Little Red Wagon. It was 86 degrees though, and I was moving slow. People were so nice to me though. When we went to find a shady place to eat our corn dogs, a woman and her friend gave us their bench. She said, “I was watching you and your face is much too red.” She was an x-ray tech and her buddy was a nurse and they insisted that I drink water and go back to the hotel for a nap. Thank you for your kindness, ladies. I will pay it forward.

We went back to the hotel and napped, and god love him, my sweet husband keeps up a string of sexual innuendos that imply I’m still attractive even though I look like a cross between Dana Carvey as a turtle and Voldemort.

the_master_of_disguise 2216490-voldemort01

We had some room service dinner and went back to the park around 8pm to try to catch the parade and fireworks. Well, it turns out that if you want to actually see a Disney parade you’d better claim your slice of curb two hours before start time. So that didn’t work out at all. Same deal with fireworks. A bit disappointing, but I was far, far, too worn out to care much, and we returned to the hotel soon after. I felt really guilty that we weren’t spending every moment on rides, but Gunny kept saying the weekend was for ME and we would take it at my pace.

IMG_2552It turned out that we walked nearly 20,000 steps that day. If you asked me if I could possibly walk that far–even prior to chemo!–I’d have said “no way in hell!” but I was wrong. I did it and lived to tell the tale! Go, me!

IMG_2565On Sunday we spent a few hours in the park riding rides and meeting Tigger, Pooh, and Captain Hook before heading back to the airport and home. It was a really great trip and I will never be as awesome as my amazing thoughtful sweet and perfect husband. And I’m super duper grateful that I didn’t shit myself on Space Mountain. Tomorrow is Round 5 of chemo. As Gunny said. “In four weeks, you’ll be done. No more chemo.”

Halle-fuckin-lujah!

Update: A couple of months ago, I posted about my daughter’s mysterious/suspicious mole and how freaked out I was. Yesterday she was seen by three very nice doctors at Seattle Children. And…it’s A-OK. No signs of malignancy! They didn’t even need to biopsy it. Things we learned: scalp moles behave differently than other moles. If you can see hair growing through the mole, it’s fine! Also, scalp moles are often two-toned and it’s perfectly fine and nothing to worry about. Common two-color scalp moles are “eclipse nevus” (a ring of dark brown around lighter brown) and “fried egg nevus” which is dark in the middle and light on the edges. Here’s my baby modeling her gown.

IMG_2582

10 Good Things About Having Breast Cancer

Well, I feel sort of like an asshole for my last couple of posts. I absolutely do want to give you the straight dope, but I don’t want to freak people out who are just starting treatment, or worse, be any part of someone forgoing chemo.

So, herewith, ten things that are GOOD about having breast cancer.

1. I discovered that I have so many more people that care about me than I thought. So, so many. Legions. I remember saying six months or so ago that if I threw a party, I’m not sure anyone would show up. Now I know that’s not so. And that is a precious feeling. That is eye-wateringly profound. Up there with “To my big brother George, the richest man in town.”

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2. This has been an unusually hot summer in the Pacific Northwest, and my bald head keeps me nice and cool. Ahhhhh.

3. I have been amazed at the kindness of strangers and their courage in just asking. From the checker at the grocery store who leaned forward and said, “I didn’t know you were ill,” to the waitress at my favorite restaurant who asked “Are you having some kind of treatment?” and the gymnastics mom who sidled up next to me and said, “It looks like you’re going through something.” It’s totally okay to ask. It’s obvious that I’m bald. And I really do appreciate the concern. It means a lot to me.

4. The generosity of friends and acquaintances. I’ve mentioned this before, but it’s still amazing and I’m so very grateful. I’ve received so many thoughtful gifts, it’s just stunning. And some are from people I would never expect. Like friends of friends, or folks I’ve never met in meatspace. It’s crazy. Just yesterday I got this in the mail. I mean, GOSH! Thank you, Ms Nonymous!

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5. The Pink Palace of Breast Cancer. And yes, I am talking about the pink ribbons and the pink everything and the whole month of October. I too, got super annoyed with Susan G. Komen and the Planned Parenthood debacle. And I felt mild outrage about pink products being sold when only a tiny fraction of the profit went to breast cancer research. But you know what I’ve learned? That shit WORKED. The “awareness” and the research money and all that? It’s why I’m going to be just fine instead of dead before the age of 50. Breast cancer has probably the most sophisticated and targeted therapies of any cancer now. Women are living because of this. So sneer all you want at that grody hue of ribbon, but it got the job done.

6. Not having to shave! I’ve mentioned this one before too, but my gosh, a whole summer of not even having to give a thought to the state of my legs is super awesome. Shorts? Sundress? Sleeveless top? ALL DAY EVERY DAY!

7. The encouragement I’ve received about this blog. I love hearing praise from, well, anyone, honestly! But the comments from women who are going through the same thing right now just KILL me. In a good way. They’ve said that they don’t feel alone now and that this is exactly how they feel….damn. What more could a writer ask for?

8. Watching my kid turn this into a laugh. “Show them your bald head, Mommy!” “That’s not her real hair. She’s bald from the chemo! Hahaha!” Well, how can you feel like a tragic figure when your six year old is busting your chops in public?!

9. The good days are SO good. When I feel energetic, or hungry, or nothing hurts? That’s some good shit. And I have learned to savor every single one. Will it last when Turdy is left in the dust behind me? I hope so.

10. The sisterhood of survivors. I can’t even tally up the network of ladies who have offered their phone numbers to chat anytime. Who have been through it and have served up real talk. Who donate books to every new BC patient at my surgeon’s office. Who tell me stories about their sister or their mom and just get it. Women can be nasty to each other, certainly. Humans in general can and will be shitty at times. But man, if I have to be a member of a club, I couldn’t find one more supportive and life-affirming than the breast cancer sorority.

Why does getting better feel like dying?

First I’m going to tell you the good stuff. In the waning days of Round 3 (and I mean the very last couple of days) I was able to eat meals and enjoy food. The day before Round 4, I ate:

A butter and brie baguette, a raspberry Napoleon, and a Big Mac. It was fucking glorious. I regret nothing. Then, when I was at the hospital doing Round 4, my dear friend Amber surprised me with a visit! She sat with me and we chatted and laughed and the time fly by. It was SO awesome. I was super happy.

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That night, I was still feeling pretty good and so the family gathered for an impromptu dinner at our favorite Chinese place in Redmond (Golden Chopsticks) and I ate all the things. And they were delicious.

The next day (Day 2) I took Gunny to John Howie for lunch. I really didn’t eat anything, but I was having fun.

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In my pre-chemo appointment with Dr. Cap he told me that it wasn’t usual to feel so nauseous for so long and prescribed some new stuff: Prilosec (OTC) and Scopolamine patches for motion sickness. I was pretty stoked to have new ammo. Dr. Cap told me that we COULD lower my chemo dosage by 10%, but of course he recommended the highest dose possible. So I told him that I’d take the full-tilt boogie Round 4 and if I was totally miserable we could maybe talk about the 10% thing for Round 5.

New side effects: I have no hair in my nose and my vision is hella blurry.

So, then armed with my new meds I waited to feel not terrible. And I’m still waiting. The Prilosec either can’t keep up with my heartburn, or the Zantac works a little bit better. I feel as though there is a bubble of stomach acid resting behind my sternum all the time. I don’t know what percentage of my nausea/lack of appetite can be chalked up to this. Honestly, I don’t know if this is nausea or what anymore. I can’t remember what it feels like to be hungry or to just have a normal stomach.

The worst bit though, is the weakness. It’s pervasive. And it’s lasting a really really long time. On Monday (Day 5) I drove Allison to Pony Camp at a local park. By the time I’d walked her from the parking lot to the barn and back to my car, I was afraid I would pass out. I sat in my car and didn’t know if I was safe to drive home. I took this picture.

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I spent most of the day in bed, sleeping a lot but also staring into space and thinking morbid thoughts. What if this is the rest of my life? What if the cancer comes back and I’m stage 4 and the remainder of my years is constant chemo and feeling like shit? I think about quality of life and then smack myself because here I lie in my memory foam queen sized bed in the richest country on earth with the best health care reading fucking Harry Potter on my Kindle and bitching about how yucky I feel.

Fun Fact: Insurance doesn’t cover motion sickness patches. I paid $110 for five patches!

I feel guilty about that. I feel guilty about a lot of things. I don’t eat with the family. I’m not watching TV in the living room with them. The sink fills with dishes, the washer and dryer are idle, the cat box overflows. Did the six-year-old get a bath? Probably not. I’m contributing nothing. How tired my family must be of me and my goddamn uselessness.

Today is Day 7. I don’t feel any stronger. I went to Target after Pony Camp drop-off and nearly had to sit down in the aisle. My pulse as I walked (according to my Apple Watch) was 38. I trolled the food aisles for anything that might pique my appetite. I grabbed two kinds of soup. When I got home I tried the vegetable, but spit out the first and only bite. Next up, creamy potato broccoli. Made it three bites, but then…NOPE. So I’m back on chicken broth, which I’m sipping from a mug my sisters-in-law sent me from Florida. It says Cancer touched my boob, so I kicked its ass!

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I am so grateful for the science that is saving my life right now. I just wish it didn’t feel like it was killing me.

What To Do About the Boobs

shehulk1First of all, this round of chemo can kiss my ass. Just in the last couple of days have I been able to eat meals, and it’s time to do chemo again. As each round gets progressively shittier, I will not be surprised if the awful nausea/gross taste lasts the full three weeks between rounds. Pissed and disappointed, but not surprised.

I also have two new side effects:

1. My thumbnails are doing this.

FullSizeRender (5) FullSizeRender (4)Some chemo patients lose their nails entirely. I’m hoping that doesn’t happen, but I also thought I might be spared this side effect.

2. Neuropathy. At least I think that’s what this burning itchy feeling is on my hands. It’s not constant, thankfully, but it sometimes wakes me up at night. What freaks me out about this side effect is that it can be permanent.

So that’s the sucky stuff. Here’s the good news: In my last post I fretted about what to do with my boobs. This past week I met with my breast surgeon, Dr. Superman (formerly known as Dr. Boobcutter) and I have a lot more clarity now. He assured me that “cutting everything off” will not statistically improve my survival rate, but if it will give me peace of mind, he will do it. He also, regarding my “one boob that’s a wonder of science and one that’s had three kids” concern, told me that if I had a mastectomy on the right breast, when they did reconstruction they’d do a little perk-up on the left breast and get them as symmetrical as possible. So that made me feel better.

What the plan is, though, is to start with a lumpectomy. On examining the bad boob, Supe was unable to feel any sign of Turdy the tumor! He said he’s “thrilled” with the chemo. So all he’ll have to remove is the little metal clip that Dr. Moviestar put in when he did the original biopsy. He’ll take that plus some surrounding tissue. It will most likely be a small enough amount that while Right Boob will have a scar, it won’t be the ginormous shark bite disfigurement I was imagining.

Turdy melting

The pathologist will examine this tissue and look for any microscopic cancer cells that may have escaped. What we’re looking for are “clean margins” aka no bad cells in the tissue around where Turdy used to live. If the margins aren’t clear, then we may go back and do the mastectomy after all.

Here’s the stinky part: After Dr. Supe consulted with Dr. Cap, they decided that because I have those four bad lymph nodes under my arm, I will also need to have a sentinel node dissection. They are going to–brace yourself–inject a radioactive tracer into my areola. Yes, boys, that’s Nipple City.

sentinelHopefully, I will already be knocked out for the surgery when it’s Tracer Time? Anyway, the tracer will flow to the lymph nodes and Dr. Supe will run a wand with a Geiger counter over my armpit and see which nodes react to the tracer. Those are the nodes that he’ll remove because they are most likely to have cancer cells. It’s a better option than taking all of them out and checking each for cancer. I can’t help but wonder if a radioactive boob will trigger a metamorphosis from part-time bitch into full-time She-Hulk.

I told Dr. Supe that I wanted to do everything possible to prevent a recurrence. And he told me that with HER2+ cancer, the most critical time is the first five years. With other flavors of breast cancer I guess it can come back within 15 years, but with HER2+, as he put it, “If we go five years without a recurrence, you come back to my office and we’ll drink champagne.”

Deal.

So here’s the tentative schedule:

  • Round 4 chemo July 9
  • Round 5 July 30
  • FINAL round of chemo Aug 20!!!
  • Lumpectomy and sentinel node dissection the week of Sept 7
  • Start radiation (5x week for 5-7 weeks is standard) first week of Oct

And then? I should be done.

Chemo – Round 2 Roundup

Okay, it may be a bit early to call this a “round-up,” but I couldn’t resist the alliteration. I really really need to get back to work on my book. Here’s the pattern that’s emerging with me and chemo:

Day 1: Get chemo. My spirits are good and I feel pretty normal.

Day 2: Go to hospital for Neulasta shot. Maybe do something while I’m out and about (This time I met my brother at the bookstore and we took a twins selfie.)

Twin baldies

Day 3: Get any shit done that needs doing in the morning because energy is going to be in short supply. This time I got my daughter off to school and then went grocery shopping. Then took a two hour nap. Then went to the marijuana store. Slept for another two hours. Cooked dinner. Passed out for the night.

Day 4. Nope. Just nope. Barely got my carcass out of bed. It was like this: Make Allison’s lunch. Lie down for five minutes. Help her pick out clothes and put toothpaste on her toothbrush. Lie down again. I barely got her little butt out the door before I was all done for the day. I got out of bed to use the bathroom and that’s it. For future reference, let’s just write off Day 4.

Day 5. Spent the first half of the day in bed, but emerged in the late afternoon for some social contact. I took a Percocet at bedtime and slept for a glorious 11 hours. It was so so so good. Did I mention glorious?

Day 6. Slept until 10am or so, but remained awake until bedtime!

Day 7. Actually got dressed and put on makeup. I’ve gotten out of the habit of giving a shit about makeup since I started working from home four years ago, but with my head all bald I feel like I have these huge alien eyes that are looking really sad and as if they are pleading with me in the mirror, maybe emitting some sort of plaintive alien sound like “bleep?” So I put stuff on the poor things. All the stuff: concealer, shadow, liner, mascara. I intended to drive up to the elementary school to take Allison her raincoat (weather app said 20% chance of precip and she’s only wearing her Darth Vader hoodie!), but by the time I was dressed I was feeling exhausted and short of breath. That may be the anemia talking, so I should probably take one of those goddamned iron pills Dr. Cap is so keen on.

WEEEEEEEEEEED

So, you’re probably wondering about that trip to the marijuana store, yeah? Here’s what: First of all, recreational pot is legal in Washington state, so I don’t need a prescription or anything. What I could have used is a little research though, because I got the totally wrong thing and the dude behind the counter was as derp as I am. What I purchased was a dropper bottle of marijuana “tincture” for putting under one’s tongue or adding to edibles. Since I’m massively barfy–much more so this time despite having two different meds for nausea (Zofran and Compazine)–I am not interested in edible anything. My thinking was: if these weed-drops make me feel like eating again I will scarf hella brownies no matter what’s in them.

full_spectrum_tinctureThe dosage for the drops was “approximately 10 drops.” The bottle contained four “servings” and cost 45 dollars. I put about 4 drops under my tongue and swallowed. I didn’t get a flavor because all the available varieties would give me heartburn. So it tasted like liquid weed. Then of course I read the instructions and it said to put the drops under your tongue and hold for 60 seconds before swallowing. So I did another 4 or 5 drops. Remember, we’re still in the recommended dose range of 9-10 drops, so don’t get all fluffy with me. Then I got tired and slept for a couple hours. When I woke up, I was stoned. I haven’t actually smoked pot since E3 2007, so I’m practically a newb again. Here’s me, stoned. Squinting and tired. Like my eyes would barely open. I cooked dinner with my eyes at half-mast and wolfed down two servings of pasta and a fudgsicle. And a piece of pie. Then I passed out. So, I’d say it cured my nausea, but it was not worth the squinty-stoner effect.

I’ve come to find out that the variety of weed I used was exactly the wrong thing. For nausea you want something high (hehe) in CBD not THC. But what am I–a weed chemist? I’m not sure I want to try again and will probably give the remainder of my drops to my mom so she can see if it helps her rheumatoid arthritis.

CANCER PERK: If you’re gonna get chemo, do it in the summer! My legs are as smooth as a baby’s ass with zero effort! Hooray for sundresses!

HAIR

The novelty of being bald has pretty much worn off, which is a pity because this is going to be the state of my head for quite a while. If my last chemo is in, say, August, I might start to see baby chick fluff in late September or October. I’m kind of used to being bald around the house, but I put on a hat when I go to the bus stop or when the pizza delivery guy comes to the door so I don’t shock anyone with my chrome dome. My mom came over yesterday to take Allison for a play date and while she’d seen photos of my head on Facebook, this was her first time seeing it in person and while she put on a brave face I could see her heart breaking just a little. I’d feel the same way if it was one of my kids. It’s one of the slides in a PowerPoint of horror that goes through every parent’s head: your kid sick, mangled, molested, missing, dead. That carousel of terrible eventualities that you can never erase.

The good news is that I wore that sassy purple wig on Day 2 and all the ladies at the hospital loved it. So did people at the bookstore. One woman crossed the store to tell me how much she loved the bright color.

STICKER SHOCK Each round of my chemotherapy medicine costs sixty-one thousand dollars!

CANTHER THUCTH

My youngest has been singing a series of songs with a common theme: she hates cancer and it sucks. Normally, I’d probably tell her not to say “sucks” but cancer can kiss my ass. She’s missing her two front teeth so her song is sung with an adorable lisp. Sample lyrics:

Toothless AllisonOh, canther you are the wortht thing in the world
and I hate you tho much.
You are a pieth of poop
and you thmell like thtink.

Now I’m tired again, so I’m going to stop. I’m confident that each day I will feel a little bit more energetic and a little less barfy and I’ll be able to enjoy (or at least make it through) the whirlwind of end-of-school-year events with my Kindergartner.

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