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Archive for the tag “HER2+”

You’re a cancer survivor – a bullet list

  • One day you feel a lump in your boob. Machines create images, doctors test a chunk. It’s cancer.
  • People say you’re a survivor the moment you announce your diagnosis. You think, “huh? What’d I do?”
  • Treatment begins in early May and concludes in late December. Start the new year clean, you think.
  • Through it all no one allows you to talk about the possibility of your death. It’s taboo.
  • 6 rounds of chemo didn’t kill all the cancer, but surgeon got the last bit. Radiation to seal the deal.
  • You think about what else the chemo might have missed. In places the docs aren’t looking.
  • You move from the apartment you’ve inhabited for 10 years to a big house with a huge yard.
  • Your brain feels foggy and you’re sure the cancer’s in your brain. It’s not.
  • You finish Herceptin in April, and begin hormone treatment that will last for five years.
  • Hot flashes ensue, along with joint pain that wakes you at night. Your knees sound like Velcro ripping.
  • You gain 15 pounds from the sudden menopause. Dropping to 500 calories a day doesn’t help.
  • You accept being plus-sized, and buy new clothes. Your age has made you invisible anyway.
  • You visit the oncologist every three months for an injection that shuts your ovaries down.
  • The joint pain is so bad your oncologist switches you to a different hormone medication.
  • Your oncologist tells you the new recommendation is 10 years of hormone meds. Not five.
  • Your joints feel better but you gain another 10 pounds in the space of two weeks. Right in the belly.

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  • You go back to college online and take on freelance work for the first time in a couple years.
  • You get a rash on your “bad” boob and panic that it’s Inflammatory Breast Cancer.
  • You consult your posse of  survivor friends. They reassure you, but tell you to go in.
  • It’s not inflammatory breast cancer. Either the antibiotics or steroid cream fixed it. You feel dumb.
  • You pass your first post-cancer mammogram with flying colors. You were expecting bad news.
  • Of your survivor posse, one has stage IV, after “beating it” nearly three years prior.
  • On next oncology visit you complain about weight gain. Obesity increases your chance of recurrence.
  • Doctor switches you back to original meds. You don’t lose any weight and the joint pain returns.
  • You pin all your hopes for the future and redemption for millennia of oppression on Hillary Clinton.
  • On election night you go to bed with a mouthful of marijuana oil before all the votes are in.
  • When you wake up and remember, you briefly consider suicide and settle for stopping your meds.
  • You gain another 20 pounds in anger, disbelief, and heartbreak. You get a safety pin tattoo.
  • In school you study psychology and plan to work with hospice patients and families.
  • You apply to volunteer in hospice, visiting patients. Your Stage IV friend tells you it’s your calling.
  • Your Stage IV friend asks if your brownie troop can come to her house and plant tulips.
  • Before you can gather the girls for the tulip project, your friend goes into hospice herself.
  • On the way to visit you think about what she’ll say. Maybe you’ll make a deathbed promise.
  • She doesn’t speak or open her eyes. You brought a huge bouquet of tulips that seem cruel now.
  • On your first day of hospice volunteer training, your Stage IV friend dies.
  • At the funeral you connect with a coworker from early in your career. She’s a survivor too.
  • That’s four of you, from just one small department in one company. Stats? Or the water?
  • At home you casually talk about what you’d like at your funeral. Your youngest stares at you.
  • You don’t think she knows that cancer kills people. You’d talked about sickness, but never death.
  • After your friend’s death you go back on your medication. Because not to insults her memory.
  • You take on tons of freelance work and study hard. You make money, contacts, and the Dean’s List.
  • Math and a new full-time job defeat you at school and you drop out of college for the fourth time.
  • You go on vacation and don’t take your medication. You don’t bother to start again at home.
  • You move into your dream house in a Norman Rockwell neighborhood where kids roam free.
  • Every night in the new house you dream about cancer. Here’s what you dream:
  • You dream about sobbing and clinging to your mother as you say “Mommy, I think I’m sick again.”
  • You dream about wasting away in a hospital bed, too weak to lift a book to read it.
  • You don’t think you’re psychic or clairvoyant. But what if the dream is a message from your body?
  • Twice, when you’ve dreamed your teeth fell out, you’ve been ill. Mono and pneumonia.
  • A friend dreamed her dead mother told her she had breast cancer. And she did.
  • You say, “I had a weird dream last night” “Was it about cancer coming back? I don’t want to hear it.”
  • You can’t talk to anyone about your fears. You just wallow in it. Silently. Alone.
  • You think about the new house and where you’ll convalesce. You buy a swing chair for the backyard.
  • You plan how to turn your new library into a bedroom and how you’ll watch the birds as you die.
  • You go camping to watch the total eclipse. You wonder if you’ll be alive for the next one.
  • The chest pain gets worse. One day at work you find yourself holding a cold can to your chest.
  • You have trouble catching your breath. You drive to the Emergency Room. You tell no one.
  • Your EKG, blood tests and chest X-ray are all clear. You’re a fool. You’re a hypochondriac.
  • You miss a big meeting, and confess to your boss you’re at the hospital.
  • You don’t want him to think you’re a sick person. You don’t think he knows about the cancer.
  • You’re already the oldest, fattest, most unsightly member of the team. You can’t afford more.
  • Your job is stressful and your brain isn’t as sharp as it was. Is it ageing or chemo or both?
  • Google tells you former smokers have an increased chance of lung metastasis.
  • At your oncology appointment you tell him about your chest pain. He refutes your Google information.
  • Your oncologist orders a CT scan to rule out pulmonary embolism and cancer. Refills meds.
  • He emails you late that night to tell you it’s clear. There’s something in your lung, but not cancer.
  • A regular doctor diagnoses an inflammation in the cartilage between sternum and ribs.
  • Prednisone clears up the lungs, and your eczema, plus your joint pain. But only for a week.
  • You feel relieved that the cancer’s not back so you go ahead with your plans to lead a new Brownie troop.
  • You want to just LIVE, but it’s always there in the back –and often front—of your mind. Cancer.
  • You wanted your life to be more meaningful, but you’ve quit school and haven’t done hospice work.
  • This is how you survive. Living between the recurrence nightmares. Pretending you’re “better.”
  • But deep down you’re convinced that cancer isn’t done with you yet.
  • And the only way to prove otherwise is to die of something else.
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Bad news, confusion, and a giant WTF


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.” bad-news-bears1

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:

  1. The chemo didn’t work completely.
  2. I am not “cancer-free”
  3. I can’t participate in the radiation research study I signed up for.

Here’s what I don’t know:

  1. What the fuck?!
  2. If there’s any more cancery shit in the lymph nodes that are still in my body.
  3. How much boob Supe took out.
  4. If there was anything left of Turdy in my boob.
  5. If the DCIS was in the scoop he took out, is there any more in my boob that they didn’t find before?
  6. What “more surgery” means. Bigger scoop? Mastectomy?
  7. 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.

Is that asking so much?

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