Trixieland

words about words

Archive for the tag “Bruce Springsteen”

Sometimes I miss cancer.

Are you surprised? I am.

tumblr_static_shrek_3dAprès cancer is a series of milestones. One year since my first chemo! One year since my last chemo! I have come to the conclusion that my cancer-free status dates from my lumpectomy, when Doctor Superman removed those bad lymph nodes and the clip to show where Turdy once lay and that surprise little in situ fucker. That surgery was October 8th.

Boob trouble

As my cancer-free anniversary approached I noticed a red rash on the “bad” boob. It itched and it seemed to emit heat. I didn’t think much of it until a week later when it was worse.

fullsizerender

The redness and heat were bad but I also thought I had peau d’orange.

Then I started to do survivor math: bad boob + persistent rash + one year must of course equal Inflammatory Breast Cancer. Let me tell you something about IBC: it’s a nasty fucker. It’s very rare, but it’s deadly as shit. By the time you notice a weirdness on your boob, you’re probably stage IV. Here’s where it gets really messed up: because it’s very rare, it’s almost always mistaken for something else. It’s sort of like paranoia. If you think you have it, you’re probably just paranoid.

I email my oncologist and fully admit I’m probably nuts but my boob and rash and la la la. He writes back right away (bless that man) and says while it’s unlikely to be IBF, come on in and have the nurse practitioner take a look. So, I go in and she looks and she says it’s probably some sort of dermatitis and she doesn’t think there’s anything suspicious about it. She prescribes some cream, and almost as an afterthought says: “Well, because it’s the right breast let’s give you a round of antibiotics too.” And I was supposed to be relieved. But I wasn’t. Because that’s how every single IBF story goes.

1. Weirdness on boob.
2. Doctor prescribes cream.
3. When that doesn’t work, Doctor prescribes antibiotics.
4. When that doesn’t work, Doctor orders a skin biopsy
5. Patient is diagnosed with IBF and the cancer has had six or eight extra weeks to metastasize.

I went home convinced I had IBF and just had to go through the motions of eliminating non-cancer to appease my doctor. I creamed and antibiotic’d and the rash got worse. It spread across my boob and then it got little pustules.

And then it got better.

I’ve formed a little group of Facebook friends that are breast cancer survivors. They range from a woman who had stage 0 and avoided chemo to one who has been stage IV since her triple-negative breast cancer came back after she’d almost hit 3 years in remission. I messaged them about my rash and they all told me it was super unlikely to be anything; but to have it checked out for my peace of mind.

I reported back to the group that I’d been sent home with a couple prescriptions but that I didn’t feel confident.

“Is my body telling me that something is really wrong, or am I just damaged?” I asked.

“Damaged,” they replied to a woman.

“Damaged,” they wrote.

“Even after four years every headache is a brain tumor, every ache is metastasis.”

So, I guess I’m a hypochondriac now?

Body trouble

Then the election happened and I was so stunned, heartbroken and demoralized that I stopped taking my fat pills, which is what I call my aromatase inhibitors. The first drug I was on, Letrozole, made my joints hurt so much it was difficult to stand up from a sitting position, and climbing the stairs to tuck my daughter into bed was a painful and laborious undertaking.

After six months of that I switched to Exemestane and my knees felt better and my hot flashes weren’t as severe or frequent. But I blew UP. Without changing my diet or activity level at all I gained 20 pounds in three months. My oncologist tells me that this hormone therapy is even more important than chemo (especially when you consider my lymph nodes were involved and I was HER2 positive and my Ki-67 was high….yikes!) and that while a year ago the protocol was to stay on it for five years, now it’s TEN.

So I cut sugar out of my diet–which was tragic because ever since chemo I’ve craved sugar like a child. Still, nothing. I’d lost 20 pounds from chemo, then gained 10 back when my appetite returned. And then 20 more pounds with the hormone therapy. So now I’m 10 pounds fatter than I was before I got cancer. I weigh more than I did nine months pregnant. This weight gain and inability to lose weight is a known side effect and there doesn’t appear to be any treatment. Even the patients who only eat organic shit and exercise every day get and can’t lose the belly. Besides feeling like a fucking monster, guess what’s a risk factor for a cancer recurrence? Yep, obesity.

And I look back at the videos of that woman with long dark hair and little skirts with a gleam in her eye having fun and I don’t even see a shadow of myself in her anymore.

And lordy, back then the whole world and their uncle Bubba just had to tell me how fat and ugly I was. Some of them said I looked like a bulldog. More than a few compared me to Shrek. Not even Fiona—Shrek. And now I see there was nothing wrong with her. She looked pretty okay for a person in her late thirties who had borne two babies.

Now I actually do look like Shrek. It’s not just the weight, it’s what chemo did to my body and my skin and my eyesight. It’s like in a matter of months I went from rather dumpy middle-aged mom to an ancient ogre with wrinkled age-spotted skin and that sick crepe-neck. My physical ailments are more similar to those of my mother’s generation than my peers. I look like an old lady and feel like one too.

Ergo, I stopped taking the damn pills. For all the vain and inglorious reasons noted above and also because I’m not all that invested in longevity if it’s gonna be in a world where Donald fucking Trump is in charge of shit.

Heart trouble

So, going cold turkey on my fat pills may or may not have exacerbated the stress and despair I’d been experienced for two post-election weeks when, after 4 or 5 days of dizziness, shortness of breath and a tight feeling around my chest I went to the ER. Partially because I was too embarrassed by my IBF freakout to talk to my doctor. I just wanted them to whip out a stethoscope and listen to my heart and tell me I was fine. But ER’s don’t play that.

Here’s a tip. If you ever want to go to the front of the line at the ER, tell them you have chest pains. The next thing I know, I’m in a gown, in a bed, getting an EKG, blood test, urine test, a chest x-ray and two doses of a delightful treat called Dilaudid.

img_7199

It’s Dilaudid Girl! She fools everyone with the strategically placed sheet. What double chin?

Everything was perfectly fine with my heart. There are white blood cells in my pee, but I don’t have a fever so who the fuck knows.But of course you must know by know I started Googling bladder cancer.

Contributing to my stress is that I’ve been searching diligently for 10 months and haven’t found a full time job. I haven’t even gotten a response for jobs I could do in my sleep. I even threw my hat in the ring for a job I basically created at a former employer…and didn’t make it past the phone screen. That felt almost exactly how I imagine a knife in the heart feels.

Hire me. Please.

I haven’t gotten to a face-to-face interview for any permanent job anywhere. For ten months. So I’ve been doing freelance stuff. But between hustling for work and begging clients to pay their invoices it’s pretty much a big fat ball of stress.

At one point I got superstitious. Like, I’ve been a pretty good person for the past several years, but before that I hurt some people. Not much in the way of real malice, but thoughtless comments, loose lips, taking a joke too far, general bitchiness. So, I went on what I called my “apology tour.” I apologized to former coworkers, online acquaintances, old boyfriends, you name it. For big stuff and for stuff so petty the victim had forgotten about it. It felt good. I felt unburdened. I was like “OKAY! NOW we’re getting somewhere!” And then suddenly a friend I hadn’t talked to in a long time hooked me up with a nice contract gig writing for a large company. I actually had an interview! All systems go! But then these things happened in this order:

  • The budget for my services wasn’t approved – sad face
  • They came up with a test-case to prove my worth – happy face!
  • They want me for three months a 40/hrs week! – happy face!
  • Four weeks pass and the contract isn’t signed. – sad face
  • Company re-org! They want me to contract 3 months then change to full time permanent! – ecstatic face!
  • Two weeks of silence – sad face
  • There’s no budget AGAIN and they can offer me 30 hours a MONTH – what face do I have now? Disappointed face? Jerked around face? Glad to have fucking scraps of work face?

Now, don’t get me wrong, it’s not 100% misery and self-pity up in here. The chickens are laying fresh eggs. We spent a fun weekend with friends in the mountains. My father finally got his ailments properly diagnosed, and I met Bruce Springsteen!

14054070_10153987732202616_1570848441952137741_n

I told him his music got me through 6 rounds of chemo. He said, “Thank you, sweetheart!”

 

But all in all, I sort of miss cancer right now. It was really liberating to have ONE job: survive.

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?

 

 

Post Navigation

%d bloggers like this: