Now that chemo and surgery are in the “done” pile, it’s time for radiation. What’s getting zapped? My right boob and the lymph nodes in my right armpit. The preparation for this has been sort of fascinating for a nerd like me. First, the radiation nurse educated me on what I can and cannot do while I’m getting radiation treatment. What sunk in is that I can’t use deodorant on the armpit that’s getting zapped. Ew, right? Well, she told me the tale of a non-compliant patient who insisted on using deodorant and his skin “sloughed off.” No pit stick. Check. The other thing is that I have to eat a ton (60-90 grams daily) of protein (Cue shit-eating grin from my husband. Nice try, Gunny) to rebuild the good cells that are going to be dying off from the rads. She said other stuff too. No antioxidants, go easy on green tea, no hot tubs or crazy hot baths/showers. I’ll see her each Friday so she can check on how I’m feeling and make sure there aren’t any early signs of lymphedema.
Next, Dr. Spiderman (the radiation oncologist) and…let’s call her Starfire (the radiation tech) gave me a CT scan while I lay on the table with my arms over my head. They made some measurements and put a sticker with a metal bit inside on each side of me and one in the middle. Then they scanned me and when they were happy with their work Starfire gave me a tiny black dot tattoo on each side.
These are so I can be lined up properly in the same spot each day so what needs radiating gets done and they don’t hit anything that could be dangerous (like my heart or lungs).
Starfire told me that the measurements she took, the CT scans, and Dr. Spiderman’s info about my particular cancer and his prescription for treatment would be handed off to a dosimetrist who would figure out the exact angle and dosage and all that. I’d never heard of such a person, so I looked it up and it’s actually pretty cool.
A week later I went back for more stuff. This time Starfire and another tech took me into the X-ray room to test out the program the dosimetrist had come up with. Make sure his calculations matched up with my human body. This was both super cool and slightly intimidating.
As machinery rotated around me and red and green lines projected over my skin I couldn’t help thinking about the rogue laser surgery machine in Logan’s Run.
Or Goldfinger‘s crotch laser. “Do you expect me to talk?” “No, Mr. Bond. I expect you to die.”
Both the disc-shaped thing and the cafeteria-tray thing that took turns rotating into position above me were slightly reflective, so I could see me and my boob and the red and green lines. Starfire popped in and out of the booth to draw on me. She also gave me one final black dot tattoo. My posture was that of a reclining nude, but with a Tron grid overlay. Weird. I didn’t have my phone, or I’d have captured it. Here’s sort of what it looked like:
And here’s what I looked like when they were done:
So, tomorrow the real zapping begins. The beams will only be on me for about 20 seconds. It will take longer to change into a hospital gown than to receive my treatment. I have a new parking pass and a special swipe card for checking in. Nurse Rad says the fatigue usually doesn’t hit for a couple of weeks, and comes not from the radiation itself but as a result of how hard your body must work to repair the cell damage. Sounds to me like the kind of pregnancy tired your body gets from building a human being. And I know I can deal with that. Actually, I feel like chemo set the bar for shit I can deal with. So I’m not afraid of radiation.
In general though, my level of anxiety is pretty ridiculous. I’ve worked myself into some sort of panphobic paralysis. I dread every phone call and email. I live in fear of a knock at the door. I went to see Spectre with Gunny and during the final third I become convinced that a man who had come in late to sit in the handicapped spot was going to pull out a weapon and slaughter us all. I had a vivid dream that I was in a cancer ward in New Orleans and the doctors discovered that I had a fatal case of akomi sarcoma. It was level 6 Hertz, which is really bad so I prepared to make goodbye videos for my children. At some point I realized I was dreaming and made myself remember the name of the new cancer, convinced this was a warning from my subconscious. So I Googled “akomi sarcoma” as soon as I woke up. Of course, it doesn’t exist.
On the more realistic (but barely) side of my anxiety, I am concerned about my liver. I’ve become super sensitive to acetaminophen (I vomit up large doses) and my appetite has tanked recently. There has been no end to the diarrhea situation aside from the two post-surgery Percocet weeks. So then I have this conversation with myself:
Me: I had a PET scan that showed nothing suspicious in my liver!
Myself: Yeah, seven months ago.
Me: I’ve had six rounds of chemo since then.
Myself: Which didn’t get all the cancer in my lymphnode!
Me: Yeah, but… Look, you’re just a freak. Stop.
So am I a hypochondriac now? Because every fucking twinge, bruise, ache, and brainfart makes me go “CANCER!”
Anyway. Here’s an update on my head. Look at all the hair!!!!!!
Since 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!
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.”
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!
Embrace the other bald. Enjoy smooth never-need-shaving legs and armpits (remember the quick showers I promised you?). Two more words: Free Brazilian.
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.)
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.
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.
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.
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.
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.
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. 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.
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.
Now that chemo and surgery are in the “done” pile, it’s time to move on to Phase 3 and plan for Phase 4 of this breast cancer “journey.” That’s so obnoxious, isn’t it? A fucking “journey.” A trip no one wants to take. It’s actually more like being an exile or refugee or something. I’ve been exiled from the land of health and forced to haul my cancery carcass up the Cliffs of Chemo and cross the Strait of Surgery in a leaky rowboat…
Eh, who am I kidding; I have health insurance and live in the Pacific Northwest which is where cancer goes to die. I haven’t done any of this on my own. I’ve been Sherpa’d up the slopes like an entitled heiress, and floated across the water Cleopatra-style.
What happens in Phase 3 is radiation. For that, I need a radiation oncologist. I met mine last week and although he looks like a young Stephen King I’m going to stick to my theme and call him Dr. Spiderman (No, I won’t be hyphenating that, so get over it now).
We’re going to zap my breast and my lymph nodes with 33 days of high-energy x-rays. So I’ll show up at the hospital every weekday for about six weeks. Each beam of zap will last about 20 seconds and the entire procedure will take about 20 minutes. Spidey says since I have olive skin I may just tan and not burn the way many fair-skinned patients do. Next Tuesday I will go in for a “Radiation Simulation” which apparently includes one hour of “education” and an hour of CT scanning and such (not sure what), so that we zap the right bits. What Spidey and his team are going to do is use the map of my insides to program the big radiation machine (or linear particle accelerator) to zap from angles that don’t hit my heart or any other important junk.
Then shortly after that will be my first date with this bad boy.
Phase 4 (and the continuation of Phase 1)
Okay, now my phases are getting all confused. Let me try to untangle this. Chemotherapy is over. I started that shit on May 5 and finished my sixth and final round on August 20. But simultaneously with the chemo, I started “targeted therapy” which is the drugs that specifically target the HER2+ aspect of my flavor of cancer. Those drugs are Herceptin and Perjeta. While Perjeta has dropped off the menu, I still get an infusion of Herceptin every 3 weeks, and will continue to get them until May (giving me a full year). This is to make sure the cancer doesn’t recur. The good part of this is that it only takes 30 minutes and I get to see my homies. Seriously, Overlake Oncology has become my Cheers.
I walk in and the front desk crew says “Christa!” I think that makes me Norm. I don’t see Dr. Captain America every visit, but I did see him last week. He’s not giving me so much crap about my anemia and I even managed to weasel out of a blood test (in exchange for getting a flu shot). This was the first time I’d seen Cap since surgery and it was the day after the Super Friends conference to discuss my case. Cap told me that with pre-menopausal womean (I am considered pre-menopausal because I was still having periods before chemo stopped them) usually get Tomoxifen for five years as their hormone therapy. But…aromatase inhibitors are just a smidge more effective (like 3-4%) in preventing a cancer comeback. But it won’t work if your ovaries are still producing estrogen. (Remember, my cancer was VERY Estrogen-reactive). So, given my age (I’ll be 47 in December) and the stubborn (there was still cancer in my lymph node after all that chemo) and aggressive (the aforementioned HER2+) qualities of my cancer, they think it would be best to go the aromatase inhibitor route. So there are two ways to make that happen. 1. Wait 8 -10 months to see if chemopause ends and Aunt Flo returns or if she’s gone for good. 2. Suppress my ovaries with drugs.
So, that is the plan for Phase 4: Some time after radiation has finished I’ll start getting monthly injections of drugs to suppress my ovaries. And then I’ll take a daily pill that is the aromatase inhibitor. That will go on for five years. FIVE. Side effects can include osteoporosis and joint pain. So before beginning this course of treatment, Cap is ordering a bone density test I guess to make sure my bones are good to start with.
It’s kinda awesome to not be on any drugs at all right now. Well, I mean I guess the Herceptin is inside my body, doing its thing, but I only have to go every three weeks, and I don’t have any side-effects. I don’t have to go to the hospital at all this week, which is refreshing.
And I feel good! I volunteered to help at my first-grader’s Halloween Party on Friday, and my chemo kitten, Loki, (we found out he was born on the day of my last chemo!) is filling our house with naughty kitten antics and soft kitten snuggles. And MY HAIR IS GROWING!
I know it doesn’t look like much, but the hair is fine and fuzzy and my head looks just a smidge darker. I’ve still got this creeping dread/anxiety inside, but I’m functioning much better. Still haven’t resumed work on my book, but I made some really good soup the other day.
Since my last post I have calmed down a bit and also found out more information. The first thing I did was go to Dr. Supe’s office and pick up my pathology report. After much Googling, consultation with my billions of breast cancer books, and knowledge I’ve sucked up over the past six months, I had some answers. Then I had a post-op appointment with Buffy the Cancer Slayer and learned more.
Okay, so the good news is Turdy is dead. I will place no flowers on that fucker’s grave. But, I am grateful to him for being big and lumpy and close to the surface. If I hadn’t felt his gnarly ass in my boob, this cancer would probably still be undetected, spreading its shitty, sneaky doom throughout my body.
Let’s go through my list of Stuff I Don’t Know and update:
Well, I guess that was rhetorical.
Um…probably not. Here’s why: The nodes that drain from my breast to my armpit were discovered using the radioactive tracer. Dr. Supe examined three of them (the ones that made the Geiger counter click) and took out two. one showed signs that cancer had been there and been killed off by chemo. The other had some stubborn cancer still in it. (probably because the malignant node was so frickin large. Twice the size of Turdy.) So I guess the rest of the lymph nodes looked okay?
A total of 7 grams. 4 for the former Turdy site and 3 for the little scoop where the DCIS was. Here’s what 7 grams looks like:
Nope. Nothing left!
We have to assume not, as nothing showed up in mammogram, ultrasound, MRI, or PET scan. My guess is that Turdy’s fat ass obscured the tiny 1mm DCIS. Could there be more? Sure. But we don’t have any evidence that there is.
Buffy says that additional surgery wouldn’t be more lumpectomy or a mastectomy. The concerning area is my armpit, so if there’s more cutting, it would be to remove more lymph nodes. Or maybe all of them in my armpit. There isn’t consensus on that yet…
Well. Because there aren’t many straight answers. Will the cancer come back? No one knows. You can look at stats and probability all day and night but you just can’t predict recurrence. It’ll come back or it won’t. And then you’ll know.
Here are some more things I’ve learned and realized in the last week:
When Dr. Moviestar called in March to tell me my biopsy was bad news and that yes, it was cancer, he told me it was Stage 2. Of course that was before a zillion more tests and scans. What no one told me (and I guess I didn’t ask, though I did speculate) was that once Turdy Jr. was discovered in my lymph node, my breast cancer was Stage3. Which is scarier than Stage 2 and maybe it’s better I didn’t know until I flat-out asked Buffy. Still. Yikes! The survival rate takes a pretty large dip between Stage 2 and Stage 3. From 93% to 72%.
I think my terrible reaction to Dr. Supe’s phone call about the path report is due to unrealistic expectations. I expected to hear something along the lines of “you are cancer-free” or “there’s no evidence of disease.” Which equals remission. (Cancer is never “cured.” Sort of like addiction; substitute “remission” for “recovery.”) Why did I think that? Partially I think because my doctors never discussed possible outcomes with me. Never gave me a range of what could be the result. Did I ask? Maybe not. What I did do, a few months ago, was watch Season 4 of Parenthood in which Kristina Braverman gets breast cancer, goes through treatment and SPOILER comes out the other side healthy. She and her husband Adam sit in her doctor’s office after surgery and chemo and he tells her “You are cancer-free.” (Or that’s what I remember happening). So, to me, that’s how the narrative goes. Prince Charming rides up, kisses your dead lips and BAZINGA! Princess Life! Naive? Yes indeed.
I asked Buffy if one more round of chemo would have knocked out the remnants of Turdy Jr in my lymph node. She told me that I’d had the most chemo I could have. So I felt relieved that I hadn’t taken Dr. Cap up on his reluctant offer to lower my dose. And also felt a little bit badass. Like I took all there was to take. My chemo was dialed up ALL THE WAY and I got through it. Go me.
What I kept focusing on was the presence of cancer. A tiny DCIS in my boob and some extra-stubborn cancer in my lymph node. Forgetting the fact that those two bad boys were cut out of my body. Not inside it any more. Gone.
So here’s what’s next. Tomorrow, all my doctors (Supe, Cap, Buffy, the radiation oncologist, and whoever else) will review the pathology in a “multi-disciplinary breast conference” and discuss what they should do with me. Yes, it’s every woman’s nightmare: people who have seen me naked will be talking about me behind my back. They’ll discuss the armpit surgery and if they think it would make me healthier/safer/less likely to have a recurrence than just going ahead with radiation (which starts soon), continuing Herceptin until May, and hormone therapy (which starts after radiation ends and lasts five years). One of those Super Friends is supposed to call me after the meeting and let me know what went down.
To be honest, I am more leery of the armpit thing than a mastectomy. The more lymph nodes you take out, the greater the risk of lymphedema, which apparently sucks big donkey balls, and they can’t do much about it. But, it’s not like I get to choose. My armpit is being a dick, not my boob.
As for the surgery recovery, Buffy snipped my little stitches and even I have to admit I am healing like Wolverine.
I still can’t immerse my boob in water for two more weeks and she warned me not to lift weights (ROFL). The grody part of my fingernails is growing out and should be gone in another month or two.
My hair…well, let’s just say it’s slow going. I still haven’t had to shave my legs.
The chemopause is worse than ever. The hot flashes are pretty fucking terrible. Buffy says that given my current age and the age my mom was when she started menopausing, I probably won’t come out of chemopause, but will just slide right into legit-old-lady-menopause. So, yeah. It’s not like I was going to have more kids, but this is kind of a tough one. However! She told me that exercise and acupuncture can help with hot flashes, and if those don’t work she or Dr Cap can prescribe something for me.
I still have a terrible battery-acid pine cone in my belly. Well, that’s what it feels like. I chalked this up to chemo nausea long ago, but the chemo’s been over for two months today (!) and the pine cone is still there feeling prickly and gross. I think it’s a ball of anxiety and my next step (well, one of my steps in there amongst radiation and Herceptin infusions) will be to maybe talk to a shrink about that shit.
Meanwhile! I have lots more energy than I used to. I changed the sheets on the bed without getting winded and I’m doing almost all the stuff I did before. I can eat food and smells don’t bother me and I’m excited about stuff. Like the Star Wars trailer, and my new kitten Loki, and the Halloween party I’m going to this weekend.
I had nearly given up on getting my pathology report yesterday. I’d started second-guessing my memory about what Dr. Superman had told me. (“He said Monday or Tuesday…maybe he meant NEXT week…”) I’d called my surgeon’s office in the morning to make my post-op follow-up appointment that morning and asked the receptionist about my report. She said it wasn’t in yet and she’d call them and find out what was going on. Then I heard nothing all day. So, I was pleasantly surprised when Supe called me around 5:30. He took a minute to apologize for the delay. He said something about how it was taking longer to process or whatever blah blah blah. Get to the good part, I thought. Go ahead and tell me “Congratulations, you are cancer-free.”
Only that’s not what he said. One of the lymph nodes he removed had cancer in it. Still. After SIX ROUNDS of shitty, miserable, fucktatious fuckwad chemo. The other node had fibrous shit in it which he says indicates it probably did have cancer, but the chemo got it.
Then the other thing he said was that in the junk he took out of my boob there was DCIS which is Ductal Carcinoma In Situ, also known as Stage 0 cancer. This stuff I guess can’t kill you unless it escapes your duct and becomes invasive (Turdy was Invasive Ductal Carcinoma). From what I understand it’s a sleeper cell. There is debate in the medical world over whether it is being overtreated currently. Right now protocol usually is to cut it out and maybe radiate it. Chemo doesn’t really work because it targets fast-growing cells. Sooooo this is another cancer that had never shown up before. Not on mammogram, not on ultrasound, nor MRI nor PET scan. It’s an October surprise.
So what now? What do I do now. Here’s were Dr. Superman gets infuriating. (Insert a bunch of words about how he’s nice and a skilled surgeon and I respect him, etc etc). Supe thinks in terms of stats. Overall stats. So when I was wondering whether to have a mastectomy or a lumpectomy, he didn’t offer an opinion, just told me that after ten years there was no difference in survival rates. So it didn’t matter which I chose. And he told me the same thing yesterday. That the chance of recurrence of the cancer statistically, over the long term will be the same whether I just go ahead with the radiation I was going to have anyway or if I have more surgery. The difference will be how I feel about it.
“Well, if I just have the radiation as planned, how will we know it worked?”
“You’ll know in ten years when the cancer hasn’t come back.”
Okaaaaayyyyy. That…doesn’t really work for me.
So here’s what I know from this conversation:
The chemo didn’t work completely.
I am not “cancer-free”
I can’t participate in the radiation research study I signed up for.
Here’s what I don’t know:
What the fuck?!
If there’s any more cancery shit in the lymph nodes that are still in my body.
How much boob Supe took out.
If there was anything left of Turdy in my boob.
If the DCIS was in the scoop he took out, is there any more in my boob that they didn’t find before?
What “more surgery” means. Bigger scoop? Mastectomy?
Why no one will give me a fucking straight answer.
Reading back about HER2 + cancer I noticed something that I hadn’t seen the first time.
“According to The New England Journal of Medicine (NEJM), up to 70 percent of patients with HER2-positive breast cancer respond to treatment. However, total remission for the condition occurs in around 7 to 8 percent of patients.”
Maybe I don’t understand it correctly, but it appears that only 7 or 8 percent of HER2+ breast cancer goes into remission. Well, that can’t be true, can it? I mean, was there only ever a small chance that I would, at some point, be cancer-free? Do I not properly understand the term “remission?”
Why did I think I’d get to hear those “cancer free” words? Why was I so convinced I’d be popping champagne corks instead of shaking my head and wondering what the fuck has gone so wrong?
Dr Supe told me he’s on call this weekend and if I have questions to call his service and tell them it’s an emergency. Which is very kind. But I…don’t know that I can ever get a straight-up honest answer out of him. Unless it’s something that I can’t use. When he says it’s statistically identical for me to have more surgery or just the radiation…what does that mean for me as an individual? That I’m fucked either way? Or I’m okay either way? And just what ARE the statistics? He didn’t mention any numbers…and I could spend all day and all of next week looking for that stat and I won’t be able to find it.
I don’t know where I stand. I have an appointment with Buffy the Cancer Slayer on Monday morning and hopefully she will be straight with me. Also, I need to get my hands on that pathology report and see for myself just what is what.
I’m not a child. I’m not fragile or addle-brained. I don’t need to be protected. I’m not asking for nuclear launch codes; I just want to know the truth about what the fuck is in my body, how dangerous it is, and how to make myself as safe as possible.
So here I am, a handful of days after my lumpectomy, still waiting for the pathology report which will presumably tell us either “We got it all” or “There’s still cancer in there.” And I’ve been thinking about the past few months and the assumptions I made and the stuff I got wrong. So I thought I’d take a minute (while I wait for the fucking phone to ring) and have a good laugh at how naive I was back in February.
I didn’t know shit about breast cancer. I knew a couple people that had been through it, but it really didn’t touch my life. The first was a friend of my dad’s ex-girlfriend. A psychologist I went to one time who told me I was in the midst of a severe clinical depression and sent me off to the worst physician I have ever encountered. Like she should probably be burnt at the stake. Anyway, this woman later got breast cancer and I saw her once, sitting on my dad’s ex’s front steps, completely bald. I was 23 or 24 and a new mom completely wrapped up in my own stuff. I didn’t say anything about her health because I was young and stupid and didn’t know what to say. And I probably harbored some residual ill-will for sending me to that terrible doctor. The next thing I knew my dad’s ex appeared at my house crying because her friend was dead and the only thing she knew would make her feel better was to see and cuddle my baby son. The second person was a contractor who worked for me at Xbox. I’m sure I told her I was sorry for what was happening to her, but I didn’t ask a lot of questions. I just wanted her to work on the stupid Xbox instruction manual so I could do the more fun stuff. When she lost her hair I gave her a really soft baby blue hat and scarf (or it could have been gloves) for Christmas. It was easier than saying something to her. Eventually her contract ended and I never saw her again. I spent a lot of time cleaning up the mistakes she’d made on the manuals and cursed her inside my head for causing me to do everything all over again. Now of course, I recognize that I was a complete selfish asshole. I think about that poor woman showing up to work every day and slogging through the mind-numbing work of getting all those fuck-tons of strings of localized copy and having to get them in the right places…all while suffering the side effects of chemo. She never complained to me. She always showed up. I didn’t give it a single thought, but she must have arranged all of her medical care around my schedule. I hope she’s okay.
When I first announced that I had breast cancer I got many messages from friends and acquaintances saying how sorry they were and offering to help in some way. My basic response was this: Thanks! It’s no big deal, just stage two. I might even get some perky new boobs! I kinda want to barf remembering how nonchalant I was. How I understood exactly nothing. My intent, I’m sure was to comfort people freaked out and worried about me, but in retrospect I was also in some big, fat denial.
I thought I’d get perky new boobs. This did not pan out for me. I’m lucky enough to have kept my old reliable boobs which are neither new nor perky anymore. But what I discovered is that the perky new boobs thing is sort of bullshit. I mean, yes, plenty of people get reconstruction, but it’s not a simple matter of lopping off the cancery tits and sticking on some Baywatch silicone implants. Not at all. There’s a bunch of unpleasant shit involved and multiple procedures. They have to leave a flap of skin for instance. And insert “expanders.” So over months they fill these pockets with saline and then a little more then even more so that your skin stretches and finally they can take out the expanders and shove in the implants in yet another surgery. Then there’s the matter of the nipples. They can try to “conserve” your nipples, but it seems that about half the time you lose all sensation anyway. So they can create little nippley protrusions and then tattoo a nipplish color onto your skin. And maybe someone’s somewhere look good, but most of the pictures I’ve seen are lumpy and scarred and not anything you’d want to flash on Bourbon Street.
I’m mildly horrified by my F.A.Q. in my first cancer blog post. Specifically the “Is this a breast cancer blog now?” bit. I’m not my cancer, I wrote. But I was so, so wrong. I had visions of just continuing to live my life with occasional visits to the hospital for treatment. What a fucking joke. Cancer CONSUMED my life. Every waking minute I was dealing with it in some way. I spent a LOT of time at the doctor’s office or the infusion suite or at the pharmacy or on the phone making appointments or looking for results or chasing down an insurance issue. Before we knew the extent and nature of my cancer I spent all my time reading books, surfing the internet, poring through forums looking for information. Once in treatment I spent all my time being fucking miserable. Searching for something I could eat. Or a comfortable position to sleep in. Or a hat to disguise my bald pate. Not even in sleep did I escape. Thanks to the menopause brought on by chemo (called “chemopause”) I woke up several times a night with hot flashes followed by chills. I haven’t done a damn thing these past few months besides have cancer.
I thought at some point I’d have a prognosis. Like, someone, one of my doctors, would give me “my chances.” I.e. my newly-calculated life expectancy. But no one has. The only thing close I’ve gotten is when my surgeon told me “If we go five years without a recurrence than we’ll have champagne.” Does that mean I’ll be lucky to last five years? Does it mean that the danger zone is five years and if I make it past that I’m in the clear? I have no idea. And I don’t think they do either. I could visit 30 different web sites and get 30 different statistics. It turns out the stats and tracking for breast cancer totally suck. Here’s the missing bit: No one is tracking metastasized breast cancer (when the cancer spreads to other organs). I mean, maybe the NSA knows how many of us “early stagers” go on to get the death sentence, but they’re not saying. Too busy looking at dick pics, most likely. I read a breast cancer article recently where the author said something that stuck with me. To paraphrase: I won’t know for sure that I won’t die from breast cancer until something else kills me.
I thought one day this cancer shit would be over. But it won’t be. Because I will always be wondering if it’s coming back. And here’s the thing: it’s not like they scan your whole body once a year for the rest of your life. They’re not going to check my brain, bones, liver and lungs unless I start having symptoms. BUT, it doesn’t matter if they find metastasized cancer “early” because you’re going to die from it. You could hang on for a decade, getting body parts removed and trying different meds until they’ve all stopped working. But the average length of survival is about 21 months. Anyway, would you want to live ten years of chemo and weakness and feeling like shit and being miserable. Right now I don’t think I would, but I guess I won’t know unless I’m tested. And I hope I won’t be, but I also know myself well enough to grok that I’m never going to be able to put this out of my mind and live my life the way I used to. I told my friend Amber that I thought that maybe getting and staying drunk or developing a Valium “issue” might be the only way for me not to spend every second of the rest of my life worrying. I’m not alone in this. Studies are finding that cancer survivors often have PTSD. I swear to you that I would give up twenty IQ points in exchange for some peace of mind.
My first post-chemo report makes me laugh. “This isn’t so bad,” I wrote. “Kinda like mild morning sickness.” Excuse me while I have a chuckle. Or the kind of maniacal laughter that turns into sobbing. As Bugs Bunny said, “What a maroon!” What I didn’t understand was that the side effects were cumulative. Durr.
I thought I would bounce back from this and be who I used to be. I suppose I still could, but…I don’t think so. My body has changed a lot. The scars from two surgeries? I’m stuck with those. The nerve damage to my finger and toe-tips? It might go away, but it might not. My hair will most likely grow back, but who knows what it will be like? Many times it comes back courser and curlier. This chemopause business. Is it going to go away, or will it just segue into legit menopause? No one knows. And guess what, girls? No one talks about menopause. No one tells you. I’m closer to 50 than 40 and all I know about menopause is the cliche about standing in front of the open freezer during a hot flash. That’s it. I don’t mind not having periods, because come on, nobody likes that shit. The hot flashes keep me up at night but I’d say they’re annoying. Not painful. What I didn’t know about is the climate change. Basically what once was a verdant rainforest becomes Death Valley. “Down there” goes from this Georgia O’Keefe painting to this one . You know what the remedy is for this? Estrogen. The same shit that my flavor of cancer feeds on. So…what? I get a sandpaper crotch for the rest of my life? Or chemopause ends and I get a few years of regular junk before the whole thing starts over? No one can tell me. No one knows.
I thought I could keep writing. Nope. I haven’t touched my Lexy short story since July 7, and I halted work on Mike Malick #2 on June 16. The only thing I’ve written is this blog. And the only thing I’ve written about is cancer. (see #4). I feel guilty about this. Before this, I wrote two books a year. Now I write selfish bullshit on a blog. It’s not that I can’t work–just I don’t want to. I’m not excited about either of those projects right now. Nor either of the side projects (a stripper romance and a YA series) that I was stoked about six months ago. I wonder if I should just skip ahead and start writing Lexy 5. But… oh who knows? I just don’t feel like writing books and that makes me worry that I’ve broken my juju and I’m back where I was when I didn’t write fiction for 20 years. I don’t have another 20 years to waste. Or do I? No one knows!!!
I thought that my friends and family, after a first rush of good will and cavalcade of gifts I jokingly refer to as “Cancermas” would dry up after a month or two. It has not. People continue to shower me with love, presents, dinners, cards, well-wishes and prayers.
P.S. Doctor still hasn’t called with pathology results.
Wow it’s been a long time since I’ve posted anything. I’ve composed many many posts in my head which I intend to get to before long. Posts about my existential crises, about what I got wrong about cancer in my first few posts, the cancer books I’ve found most useful and entertaining, and a list of stuff I can do while I wait out radiation and grow some hair. But those posts are for another time. I want to stick to one subject today: breast surgery. I’m going to try to be pretty detailed while it’s fresh in mind and hopefully it will help people about to go through the same thing have a better idea of what to expect.
So, here goes: I checked in for my lumpectomy (also called “partial mastectomy”) at 7 a.m. The plan was that my daughter Callahan would come with me and my husband would stay home and get our daughter Allison off to school. Then Callahan would go to her college class in the afternoon and Gunny would pick my ass up after surgery was over. Of course none of this played out quite the way we planned. Allison had a minor meltdown in the morning. She was “Sad about that thing” (That thing being the cancer and the surgery and probably the disruption to her morning routine). Daddy asked her if she wanted to help get Mommy checked in at the hospital, if that would make her feel better. It would. So we took two cars to Overlake Outpatient Surgery.
I got checked in and the woman looked at the schedule and told us I’d probably be ready to go home around 4 or 4:30. Well, that threw a wrench in Plan A. Plan B was Callahan would return to the hospital after her math class got out at 3:30 so Gunny could pick Allison up from after-school chess club. I kissed Gunny and the baby goodbye and Callahan and I went in the back. I lay down in the bed and the nurses asked me about allergies and what medicine I was on etc. The only thing I’m on really is magnesium. I thought my supplement days were over when Dr. Captain America deemed my hemoglobin high enough for surgery. But I got an email from him last Friday telling me to double up on my magnesium dosage for a total of 1600 milligrams per day. Here’s the deal with magnesium: it makes you poop all the poop in the world. Which is probably why, even though my appetite is back and I’m as physically idle as ever, I haven’t gained a pound since my last round of chemo. It’s like bulimia of the butt. Honestly (and here I am describing shit to you, so what else could I be but honest?) I don’t think my body remembers how to manufacture regular poo. It’s like the enzymes or whatever is responsible for shit-creation are hanging out in my guts and some sushi or hamburger appears and one of ’em says “Food, huh? Uhhh what are we supposed to do with this?” and another one (maybe wearing a tiny construction hat) takes the tiny cigar out of his mouth and jerks a thumb towards my ass and mutters, “Ehhh, just liquefy it and shoot it out the back.”
Um. Anyway, the nurses set up an IV line in my hand and take my vitals and all that. I was tired and kinda punchy and suddenly so very grateful I hadn’t gone off the deep end and insisted we cut off my boobs. Surgery is weird and scary enough…at least I wasn’t saying farewell to those murderous twins. After a while of hanging out in that room, it was time for me to go to the Breast Center (where I had the original mammograms and Turdy (the breast tumor) and Turdy Jr. (the malignant lymph node) were discovered) to get some frickin’ wires put in to guide my surgeon Dr. Superman. I was kinda hoping it would be a fun reunion with Dr. Moviestar, but no such luck. I was hoping Callahan could come in the room with me, but they wouldn’t let her. Mainly because they’d just taken delivery of this massive new machine that looks–I shit you not–like a battle mech.
About seven feet tall, it has these arms that reach out on either side of you, and these plates that flatten your tits into flesh pancakes. There was a grid with markings and the doctor, after getting my boob squashed into the right position, took a surgical pen and marked my skin at position B-10. My response? “You sank my battleship!” Then she stuck lidocaine in my boob to numb it. That stung like a mo-fo. Then she followed that up with a teeny but hollow needle and threaded a single tiny wire through. One end was right on the metal clip Dr Moviestar had dropped in when he took the core biopsy of Turdy. The other end of the wire stuck out of my boob. I looked like a hedgehog with one lonely quill. The doctor liked that idea. She also loved the hat my friend Kiki made me. Being a knitter herself, she recognized quality work. I really wanted to get a picture of my boob wire, but by the time I was reunited with my phone, I’d been gauzed and taped up. We moved into an ultrasound room for the next part: locating the clip Dr Moviestar had put in Turdy Jr in my armpit. The doc had discussed this with Dr. Supe and he’d told her that if she couldn’t find the clip, no biggie, no wire, he’d find it with the radioactive tracer. Well, she couldn’t find the clip and guess what else she couldn’t find? Turdy Jr. That 4 cm asshole was GONE. I saw for myself on the screen.
I was feeling pretty good. The wire bit was over. They wheeled me back to outpatient surgery where I waited almost an hour for Nuclear Medicine to be ready for me. Callahan was exhausted and I felt guilty for wasting her time since it wasn’t looking like she was going to get to actually see anything cool. So…I sent her home to nap before class. Because I’m a dumbass. When Nuke Med was ready for me, it turns out she COULD have come with, and the tech, Gail, had trained at the exact same program at Bellevue College that Callahan is hoping to get into. AND Gail is friends with the director of the program. So I fucked that up and feel like a stupid, stupid asshole. So, remember me telling you that I was going to have a shot of radioactive tracer in my areola? And that the tracer would flow to my lymph nodes so that Dr. Supe, during surgery could run a Geiger counter over my armpit and see which nodes were cancery and take them out?
Wrong. First up, as the doctor told me, the tracer doesn’t go to the cancery bits like a moth to a flame. It shows which lympnodes are draining from the breast as opposed to another area. These little breast dumpsters are where the cancer would spread. Okay, now I know. The other wrong stuff? It wasn’t one shot…it was FOUR. Not in the areola, but at the perimeter, where the skin changes color from regular skin to nipply color. The placement, as the doctor put it, was three, six, nine and noon. It actually didn’t hurt that bad. Gail held my hand. When the shots were over they had me hold a heat pad to my boob and massage it so that the tracer flowed to the lymph nodes more quickly. I babbled about being radioactive or become SheHulk or an X-man. They were probably glad to get me out of there.
Back in my little room it was still 45 minutes before my surgery was scheduled. I dozed a bit and screwed around on Facebook via my phone. The anesthesiologist came in to introduce himself, the nurses hooked up the IV (fluids, antibiotics, and anti-nausea stuff). Then Doc Superman came in and after I flipped him a bit of shit about the one nuke shot actually being four. He went over what he was going to do: Take out the Turdy clip in my right boob plus a little bit of surrounding tissue, then Geiger my armpit and take out up to four lymph nodes. He initialed the right breast (so, you know, he got the correct boob), and said, “See you in there, kid.”
When I had the surgery to install my medi-port back in late April, I have no memory of the actual operating room. I think the anesthesiologist started me off in the wait-around room with a sedative and I was out of it by the time they moved me. But this time, I was totally alert. The OR was big and REALLY cold. Besides the anesthesiologist there were three nurses in scrubs and masks and I started to get a little nervous. It was REAL. Then I scootched off the gurney bed onto the operating table which is ridiculously narrow! Like skinnier than a dorm room bed. Probably 2/3 the size of a twin bed. Dr. Feelgood put a sedative in my IV and an oxygen mask over my mouth and nose and…
…woke up in the recovery room. Dr. Supe told me everything went great and he’d only had to take two lymph nodes! That’s really good because the more nodes that come out, the higher the risk of this super shitty (and often permanent) swelling and pain called lymphedema. Supe asks who’s picking me up and I say my daughter. Then I look at the clock and it’s only 2:00. Callahan’s about to go to class. So I tell him my husband. Supe has the number and gives him a call.
I move to a new room that has a recliner instead of a bed and the nurse gets me a Diet Coke and Saltines. (I hadn’t eaten or drunk anything since 10:30 pm the night before and I was HANGRY). I get my phone out of my stuff and post some updates to Facebook while the nurse calls in a Percocet prescription. After a while she goes to the waiting room to look for my husband. He’s not there. They ask me to call him and I do, obviously waking him up. Dr. Supe had just told him surgery went well, but didn’t mention that he needed to come get me. So he hauls ass to pick me up, feeling terrible though it was no fault of his!
We picked up the baby from school and when she saw me in Jeep she said “MOMMY!!!” We went home and I crawled in bed and Allison gave me this picture she drew for me.
Gunny picked up my prescription and a Big Mac. It tasted like heaven.
So now I’ve got my Percocet with a Pinktober cap and my boobs are wrapped up in an Ace bandage.
I can take it off and shower on Saturday (48 hours after surgery), but can’t take a bath or swim for three weeks. It’s sore, but really not too painful. The only annoyance so far (besides the sweaty funk I’m sure is brewing inside the boob burrito) is I can’t sleep on my right side. This morning I peeked under the bandage at Turdy’s gravesite. It doesn’t look too bad! My armpit is kinda numb.
So what’s next? On Monday or Tuesday Dr. Supe will call with the pathology results. That’s when I will find out if there is any cancer left in me. I’m feeling optimistic and am fully expecting to hear that I am cancer-free. And then, friends, we are going to PARTY.
This might be the only blog post on the Internet that’s not about T Swizzle. By “bad blood” I mean that my actual blood in my actual body is bad. It’s anemic and my hemoglobin is waaaaay too low. This whole time I’ve been so worried about my white count and if it would get so low it would delay my chemo schedule. So, there I was, at the hospital for my very first Herceptin-only “maintenance” infusion. Feeling like a recent grad visiting her old high school during the first week of school. You know, feeling pretty good. Maybe a little smug. My appetite had just returned and I’d had sushi for every meal for two days. (Except breakfast of course, because I don’t do breakfast. Breakfast food is beyond delightful. It’s eating it in the morning that I object to.)
Anyway I get in there for my appointment that’s supposed to last 30 minutes. And I discover that Dr. Cap has snuck me onto his schedule. “He probably wants to yell at me about my magnesium,” I groaned to the nurses. (NOTE: Dr. Cap doesn’t “yell.” He might actually be incapable of raising his voice.) I can’t remember if I wrote about this before, but my magnesium was wicked low right before my last round of chemo so Cap put me on 800 milligrams a day of the stuff. And I was really good about taking it. And YET this was not reflected in my blood panel! How, I asked, could I be ingesting two 400 mg tablets of that crap every day and it not show up in my blood?! Cap told me to eat magnesium-rich foods. Well, at that point I wasn’t eating jack shit, so I just kept taking the pills and took long baths in magnesium sulfate (bath salts, baby) which I’d read that you can absorb through the skin.
Now, I’ve been anemic for basically ever, which doesn’t make sense to me. I eat red meat. The only veggies I like are the green ones. There’s no frickin’ reason for me to be anemic, but I am. I was a decade ago, I was while pregnant with Allison, I was 18 months ago at my regular doctor, and I have been throughout chemo. Everyone and their dog told me to take iron pills. And I ignored them because they upset my stomach and clog up the works. If you know what I’m saying. Hashtag no poop. Anyway, I wasn’t worried about it, but apparently I should have been.
Because Dr. Cap told me that my hemoglobin was too low for surgery. *sad trombone* To tell you the truth, I wasn’t even sure what the hell hemoglobin was. My first thought was a Spider-Man villain. Apparently that’s not quite right. It is “the iron-containing oxygen-transport metalloprotein in the red blood cells.” It looks like the fourth of July!
Dr. Cap said we should delay surgery for a few weeks and I needed to start taking the iron supplements seriously. He told me that the official call on surgery belonged to Dr. Supe (my surgeon), but with hemoglobin that low (7.5 if you’re curious. Normal range is 11.3-15.5) it just wasn’t safe. He told me that if the iron supplements didn’t raise my levels we’d have to give me someone else’s blood. Yikes. So I’m taking the dang iron pills and they suck. But I take them twice a day. Surgery has been rescheduled for October 8.
The good news is that my heart is just fine. This is confirmed by an EKG and an echocardiogram. There wasn’t any damage from the Herceptin.
A couple days after starting to take the iron (and more than three weeks passing since my last chemo!) I had an excellent day. I felt good. I ate food. I had energy and did a bunch of housework. I did, however, have a bit of a meltdown at the party store. Gunny and I went to get a Harry Potter costume for Allison and I found this cool pink lady wig.
Now that it’s Halloweentime, all the cool wigs are out and since I’ve got barely a hint of stubble on about 1/3 of my head, it looks like hat and wig city for a good while. I said something to the cashier about how the wig was for me and blah blah bald head and she told me she’d had breast cancer twice. They’d missed something the first time and she got more lumps and had to go through all the treatment again. “You’re going to be okay,” she told me. And I got all teary-eyed. And I asked her “Are you able to make plans for the future?” and as I said this, I lost it and started crying and–thanks Herceptin Drip–my nose ran right onto my shirt. She leaned across the counter and hugged me. “It’s going to be okay,” she said. “I promise. I swear to God it’s going to be okay.” Then she gave me her phone number and said to call her if I wanted to talk.
You just never know when you’re going to break. And I don’t know if I was crying because of cancer and future and will I EVER have peace of mind or because Antoinette at Everything Party reached out to me with kindness when she didn’t have to. BTW she told me that it took her a while, but now she is able to think about and plan for a future.
School has started again, and with the homework packets and library books, Allison brought home the first cold of the season. In the old days, pre-Cancer, everyone would get sick to some degree while I would have a half-day of sore throat and then be fine. My immune system was a rockstar. Well, no more. I got pretty sick. Not go-to-the-doctor sick, but sick enough to stay in bed and watch Columbo episodes on Netflix. I’m feeling better now, but that cough/cold knocked me on my butt for a few days–and just when I was feeling good again!
I don’t have to go back to the doctor until the first week of October for a pre-op consult with Dr. Supe, and then my Herceptin action the next day. So in the meantime I will concentrate on whipping my blood into shape, getting Glitched out in paperback, and maybe perhaps I hope doing some work on my next Lexy story which I haven’t touched since July 7.
Well, here I am almost three whole weeks after my sixth and final round of chemo. That day was extraordinary. I felt accomplished, and loved, and, well, triumphant.
Since then? Not so much on the triumph. I don’t feel as though I’ve kicked cancer’s ass, or won the battle much less the war. The fact is, I don’t know if the chemo worked! I won’t know until Dr Superman does the surgery next week and the pathologist gets my cells under a microscope.
Yeah, I suppose you could say I “won” for getting through all those weeks of chemo. And don’t get me wrong, it’s definitely the toughest thing I’ve ever done (and I gave birth to three children). But seriously, what do we mean when we say “got through chemo”? We mean I didn’t die from it or stop doing it. Okay, I did do that? But all I actually did was show up to my appointments and not bite or scratch the nurses who hooked up my infusions.
The truth is, in this little intermission between treatment, I feel like cancer kicked my ass. Or chemo did. I don’t feel triumphant, I feel ravaged. Whipped. Decimated. Like this:
I think I felt this most keenly on my recent vacation. Each year for the past five we’ve gone to the family beach cottage in Aptos, California. It’s on the coast about halfway between Santa Cruz and Monterey. It’s my happy place. And even though I tried to set mine and everyone else’s expectations that I wasn’t going to be 100% this year and that I may not participate in everything, I was still very disappointed in myself. At first the mega-doses of magnesium that Dr. Captain America prescribed seemed to really help. I was able to keep eating for a day or two longer after chemo than I had for the last couple of rounds. I was very tired though, and rather than playing board games the first night at the beach house I was asleep by 8 p.m. The next day Gunny took all three kids out shopping and stuff and I slept all day. All day. What a waste, right?
Dana’s mom and step-dad “MeMaw and PePaw” drove their RV from Texas and joined us for a couple days. First up we went to the Monterey Bay Aquarium which we try to visit every other year. Allison is typically a pain in the ass for this, but this year I was the pain in the ass. I’d exhausted myself walking to the aquarium so Gunny got me a wheelchair. Yes, a WHEELCHAIR. This was pretty much the low point in this whole cancer carnival. I took my hat off because it was hot and also so that people would see that I have a reason for being in a wheelchair. Cancer logic. I needn’t have bothered: being in a wheelchair affords you the power of invisibility. Seriously, no one saw me. People would stand directly between me and the exhibits.
The next day we went to the Santa Cruz Beach Boardwalk (Mecca for 1980’s vampires), and I was able to get around okay as long as I rested every once in a while. The kids went on rides and I looked forward to a boardwalk corndog. Unfortunately, by that time my appetite was gone. The next morning I was reading the final Harry Potter book and Ron wished he had a bacon sandwich. Gunny made me one and I ate the whole thing. Unfortunately, that was the last time I’d eat for a week. Wait, that’s not quite accurate: I was able to eat dill pickles. The combination of strong flavor and smooth texture was just un-barfy enough to allow me to eat one each day. Great, but half a dill pickle has four calories. Not really sustainable.
Anyway, I was a big fucking drag on the vacation and I know it’ll be better next year and this was just a temporary blip, but I felt sorry for myself and ashamed that I’d ruined it for everyone.
I think part of my problem is that it’s sunk in that although chemo was a long shitty road, this fucked-up journey is no where near over. I’ve got my first maintenance dose of Herceptin tomorrow, and a pre-op appointment with my surgeon. Then Monday an echocardiogram and Tuesday the lumpectomy. I know I should be focused on the fact that progress is being made and that it WILL be over one day. But part of me has realized it will never be over. I will never be “cured” I can only be in remission. I will never not worry that it’s going to come back and finish me. I will never get back these months. My hair is gone. I’ve gone into chemo-induced menopause and I don’t know if I’m coming back out. I’ve lost 20 pounds (okay, well that’s not so terrible). My face is fucked up. How so? My skin is just ravaged by chemo. I had pretty nice skin before. It runs in my family–the good Swiss skin–that stays moist and plump and makes strangers ask us for our ID long into our thirties and sometimes forties. I was actually carded once while buying a CD with a parental advisory sticker. I.e. they weren’t sure if I was 18 when I was 35. Anyway. Those days are over. I now have freckles and marks where I had none before. They aren’t kidding when they say chemo makes your skin react to sun differently. And I used lots of sunscreen. The texture is fucked up too. Whatever collagen or remnants of youthful springiness that my skin had is gone. When I smile there are thousands of wrinkles. My skin is pleated. This will probably be the photo that will haunt me the rest of my life, but here goes. This is what chemo did to my face:
Here’s the good news. It looks like I get to hang on to my eyebrows and eyelashes. I think if I was going to lose them they’d be gone. And I’ve discovered a couple of unexpected benefits. I used to have patches of eczema on my shins and that is completely gone. I used to pick at and gnaw on my cuticles and I have stopped for some mysterious reason. All that’s cool, but not exactly a fair trade for my face, hair, and peace of mind.
So that’s the story. I’m just starting to be able to eat again but am still feeling pretty weak. I’m trying to jump back into some normal routines but it’s slower going than I’d like and I can only hope that people will continue to be patient with me. I think my overwhelming feeling right now is anger. That I had to go through this. That my family had to go through it. That my summer was stolen from me. That I’m sort of afraid to plan for a future. That sometimes I’m so tired and worn out I don’t even care if I have a future.