“No one can confidently say that he will still be living tomorrow.” ~~ Euripides

They say the truth will set you free. They don’t tell you how you’re supposed to share it. Sometimes sharing the truth, especially with people you care about, is harder than keeping a secret. Attorneys have to be good at keeping secrets. I never found it to be a problem for me. But this is one secret I won’t be able to keep, so I’m choosing to share it with you this way. I’ll add more chapters as time permits.
Once a week I meet with other writers in my home for our Writers Group. I’ve been doing this for over a year now. Each of us read four double-spaced pages of our work and receive insight and constructive criticism from the other writers and our leader, a published poet who teaches creative writing at a local college. I’ve been working on editing my first novel (I’ve written three and part of a fourth), in the hopes of publishing it soon. Here’s my story, as I told it to them:

***************************************

To: Writing Group
From: Genyne
Date: April 14, 2013
Subject: On a semi-serious note…

Hi:

I have something I need to share with all of you. I’ve thought a lot about how to say this. I thought about telling you in person, maybe before you left on Wednesday. But it seemed so melodramatic. Nobody needs that kind of awkwardness, least of all me. Plus, you never know how many of you will be there, so then I’d have to repeat the story, which would bore those of you who’d already heard it. So, being that I’m a writer, I thought it would be best if I told you this way:

On March 15 I was walking the dogs. As we started up the steep driveway to the restaurant behind my house, I felt some sharp pains in my chest, but to the right of center. You all know I’ve researched the symptoms of heart attacks in women, how they’re not the same as in men. Well, naturally I figured I might be having a heart attack. I called the Kaiser advice nurse, and had a neighbor drive me to the ER. Turns out the news was much worse than I anticipated.

In the last month, I’ve been through a battery of tests, and there are still more ahead of me. I’ve been poked and prodded and bruised — multiple times. Worst of all, they made me wear the ugliest, most unflattering piece of clothing ever devised. Seriously. Whoever designed those hospital gowns should be shot on sight. Do they actually fit anyone? Who’s shaped like that?

Last Monday I had a biopsy. I don’t recommend it unless, like me, you have an insatiable curiosity and a determination to survive. First, the doctor came in and had a little chat with me about what would happen — sort of a preview of coming attractions. Shades of the shower scene from “Psycho,” judging from Dr. Loh’s description. Then he left and the nurse gave me a sedative. I needed it to recover from the chat. They probably think if they scare you enough, you’ll do exactly what they say. And they’re right. I was a good girl. I held my breath and didn’t move — every time he told me to, even while he was sticking an ice pick in my chest. I know it was really a needle, and just felt like an ice pick. But this story needed some foreshadowing. Maybe this will help:

www.dramabutton.com

On Friday I met with Dr. Maloney. He’s about twelve. My sister flew out and went with me to the appointment. Afterward, she told me she kept wanting to call him Doogie. Turns out young Dr. Howser — er, Maloney — is the Head of Oncology, so I figure he must be really smart, and older than he looks. So when he told me I have stage four lung cancer, I believed him. My exact thoughts were, “Oh crap!” (Maybe you’re having similar thoughts right about now.) I’d been praying for stage three since March 15, when the ER doctor told me, “The good news is, your heart was fine. The bad news, you have lung cancer.” You know those cartoons where the Roadrunner drops an Acme anvil on Wile E. Coyote? Well, I know exactly how poor Wile E. must have felt.

It just goes to show that sometimes prayer doesn’t work. Sometimes God answers your prayers by dropping an anvil on you. Now I’m praying for a mutation that will allow me to take one of the newer oral drugs. Doogie says they’re better for me. There are less side effects. The tests on the biopsy sample will take another two weeks. Hopefully the Roadrunner will give Wile E. a break. Meanwhile, so we don’t waste any more time, I’m scheduled to start chemotherapy on Friday. Oh joy. On Tuesday I have my Chemo 101 class, so I can learn all about the fun and games in store for me — rashes, baldness, and don’t forget the puking.

Unfortunately, you guys are probably going to get to experience the lovely side effects vicariously, because I have no plans of quitting the Group. Not now when I need it most. Because I’m even more motivated to get my novels finished and published as soon as I can. I don’t know how much time I have left. Doogie says the averages you find when you Google don’t apply to me because most of the people in those statistics were older, sicker, and were smokers. That’s when I decided I really liked Dr. Maloney. So I’m optimistic I’ll have time to get my novels finished and published. Anyway, that’s my story and I’m sticking to it.

Oh yeah. Almost forgot the punch line. I never smoked a day in my life.

I love you all, and please don’t make a huge deal about this,

Genyne

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To: Writing Group
From: Genyne
Date: April 24, 2013
Subject: Update

Hi:

Just a quick note to let you know that my chemo was postponed until next Tuesday. My oncologist wanted to start it after I did my first PET scan. That way he’ll have a before and after shot, so he’ll know what changes to attribute to the chemo. So I’ll have an MRI tomorrow, the PET scan on Friday, and chemo starts Tuesday. Meanwhile, I’m still waiting for the results of genetic testing to see if I qualify for one of the new treatments. So it’s still possible I may not have to do chemo. I hear there are less side effects with the new drugs and they’ll buy me more time, so my fingers (legs, arms, and eyes, too) are crossed. That’s all for now.

Genyne

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To: Writing Group
From: Genyne
Date: April 30, 2013
Subject: Great News At Last

Hi:

I went to Kaiser today as planned, and once again I didn’t get my chemo. Instead, I received the news from my oncologist, Doogie, that I tested positive for a genetic mutation that will allow me to take this new targeted drug called Tarceva. It’s designed specifically to work on the genetic variant of lung cancer that I have, which apparently only non-smokers get. The “good news” part of this news? This drug will probably double my life expectancy over the other chemo I was scheduled to receive, and it doesn’t have all the side effects of the untargeted drugs, because it only acts on the cancer cells instead of every fast-growing cell in my body. That’s right, I won’t be losing my hair (unless I start pulling it out or something). I also might get some nausea, a facial rash (oh joy) and diarrhea (because I know you all wanted to know this detail), but I won’t be puking and stuff (yay). I still have to avoid sick people and their germs, so I will still be asking you to wash your hands when you get here, just like your piano teacher used to do (or maybe that was just my sister’s anal-retentive piano teacher, whose name escapes me).

I have to wait for the pharmacy to order the Tarceva, and it won’t be here until tomorrow afternoon or Thursday. Why, you may ask? Because, Tarceva costs $10,500 for a 30-day prescription, and they won’t stock something that expensive. Thank goodness my co-pay is only $35 or I’d be up the proverbial creek without a paddle.

I no longer require help setting up the house tomorrow, but thanks to those of you who volunteered to help. I may have to ask again in the future.

Doing a happy dance,
Genyne

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To: Writing Group
From: Genyne
Date: May 6, 2013
Subject: Sometimes you CAN make a silk purse…

…out of a sow’s ear.

When you see me on Wednesday, the first thing you’re going to notice is a dramatic difference in my appearance. During the last 72 hours, I’ve developed a facial rash — one of the side effects of the drug I’m taking for my cancer. We’re not talking a few pimples here. I look like my face caught on fire and somebody put it out wearing golf shoes. I shocked myself when I looked in the mirror this morning, because it’s even worse than yesterday. Plus, I have little pimples on my lips that continue all the way around to the undersides. It’s not pretty (understatement). But after going online to research what people do to treat the rash, I found this article, which made me so happy to have a mutilated face: www.news-medical.net/news/2007/07/04/27179.aspx

So when you see me, be happy I look like crap. Seriously. Now, when I look at my face in the mirror, I think: 245% longer. Hootie hoo!!

Genyne

*********************

To: Writing Group
From: Genyne
Date: May 21, 2013
Subject: The Good With the Bad

Hi:

I have an update. I got some good news last week and I couldn’t tell you about it because I hadn’t told you the bad news that preceded it. I don’t like bad news. Sharing bad news is like popping a kid’s balloon or farting in church. But now, I need to tell you about the bad news so I can gloat about the good news.

A few weeks ago, as you may recall, I got the PET scan and the MRI of my brain. Dr. Maloney said the latter was only to verify that I didn’t have any metastases to my brain. He didn’t think there were any because I didn’t have any symptoms, which he said would be like the symptoms of a stroke — slurred speech, headaches, dizzyness. (Okay, no cracks from the peanut gallery about me being dizzy.) Then Dr. Maloney took the next week off to go to Disneyland. So late on a Friday afternoon, while Dr. Doogie was cavorting with Mickey and Goofy, I get a call from Dr. Kim, the oncologist who was filling in for Dr. Maloney during his vacation. She had reviewed the results of the PET scan and MRI.

S-C-H-W-A-C-K!! That was the sound of her hitting me upside the head. But in Reality Land, she calmly told me they found two tumors in my brain. (Now, don’t freak out like I did. It gets better.) Doogie forgot to mention that one of the symptoms of a stroke is denial, because the first thing I said to her was, “Are you sure, because Dr. Maloney said I didn’t have any symptoms?”

“I saw the pictures,” she said. No emotion. “I’m sure. They’re in your blahblahfrontal lobe. One’s really tiny, and the other is 1.3 x 1.0 x 1.1 cm. It’s well-defined, so that’s a good thing.”

Well, thank God for that. [sarcasm alert] But what I said was, “What does that mean?”

She said it would have been worse if the tumor had tentacles. Okay, I can buy that. Tentacles are always a bad sign. I’m thinking of a giant squid reaching out of the inky depths to strangle some poor, unsuspecting diver. Not that you’d ever catch me underwater, or even on the beach (hey, I burn walking past an open window). But that’s when my denial evaporated and panic set it. I need my brain. I use it at least once a day. So I sat around that Friday night sulking and feeling sorry for myself. Now aren’t you glad I didn’t share that with you?

So, why am I telling you now? Because, last Monday I went to South San Francisco to meet with Dr. Millender, an oncologist who specializes in radiation treatments. Dr. Maloney referred me to her for a consultation about my brain mets. That’s what they call the tumors in my brain. Sounds so innocuous, doesn’t it? Baseball and apple pie. Anyway, Dr. Millender ordered another high resolution MRI, and explained to me about a procedure called Cyberknife. It’s a new technique for administering pinpoint radiation to a tumor in a person’s brain. She said it would be the best treatment for my particular tumors, because it wasn’t invasive like brain surgery, with all the complications, and it wouldn’t result in eventual dementia like whole brain radiation. It was the dementia thing that sold me. She said there’s a 100% chance that radiation of the whole brain will eventually result in dementia. Uh, no. No dementia for me, thanks. I got fitted for my immobility mask (my friend says she’s going to take a picture), got my MRI and said, “Thank you very much.” Dr. Millender scheduled me for the Cyberknife “surgery” for one week later. This afternoon, in fact.

By now you’re probably wondering, is she ever going to get to any good news. I guess I’ve tantalized you long enough. Last Tuesday, I got an e-mail from Dr. Millender. Here are her exact words: “Dear Genyne, The Tarceva seems to be working… The main lesion is smaller, and I cannot find the little spot now. 🙂 ” (yes, she even included the smiley). My reaction? Well, hallelujah! And even better, Dr. M told me that even though I was taking Tarceva, only a little of it would get through the brain/blood barrier, so I needed the radiation for the brain tumors. Therefore, putting the pieces together, it stands to reason that if a little Tarceva made one brain tumor shrink and the other disappear, it is probably wreaking havoc on the tumors in my lungs. I’ve been visualizing the lung tumors shrinking and evaporating ever since. That’s the good news.

This afternoon, my friend is taking me to South City again for my Cyberknife procedure. It will take about 45 minutes for a robotic “surgeon” to apply radiation to my one remaining (and smaller) brain tumor from lots of different angles. That way, they can use less radiation for each shot, but they all cross at the tumor. The cumulative effect will be to kill the cancerous spot, but leave the rest of my brain dementia-less. YAY! Oh, and Dr. Millender said there was no chance of damaging my memory or speech, because the location of the tumor is in an area of the brain that doesn’t control those functions. She said they don’t know whether there’s anything that area of the brain actually does. Another YAY for the useless part of my brain.

See y’all tomorrow.

Genyne

**************************************************
I know all this is a lot to take in at once, or maybe even at all, so please don’t feel compelled to respond. I just love all of you and I wanted to let you know what’s going on with me. I’m not broadcasting this to the local Bars just yet, and I’d appreciate it if you don’t do so. I have some irons in the fire that I need to take care of first. I’ll tell you about it when I can. In general, I’ve been taking no new cases and getting rid of the old ones bit by bit. I’m still doing a little consulting.
On July 9, I have an appointment at the Social Security Office to file for permanent disability benefits under their compassionate allowance section, for which I qualify because of my diagnosis. On Tuesday, I had an infusion of Aredia, which will help protect my bones. I got severe-flu-like symptoms and dizzyness for 48 hours afterward. This will take place every 28 days. I went home to visit family recently, and it became obvious to me that I don’t have the energy I used to have. The drugs are the culprits. Ironically, since they’re keeping me alive. Except for the many side effects, and my test results, my doctors say they couldn’t tell I even have cancer. But I can tell. I can still make up to about $1,000 per month without affecting my disability, or so I’ve been told. I’ll find out more later. So please do keep me in mind. Even if I go back to Georgia to live with my sister, which she has asked me twice to do, I can work from there via the internet. Isn’t technology marvelous?
I still want to have lunch with you guys, but you have to promise we won’t talk about cancer. I’m sure there’s lots of other things to talk about.
Love to you all,
Genyne
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7 responses to ““No one can confidently say that he will still be living tomorrow.” ~~ Euripides

  1. Holy balls! I’m not sure how else to respond. I browsed over from Facebook thinking you got a puppy or wrecked your back lifting kitchen tools.

    I’d actually love to hear more about the gamma knife surgery. I did the conventional surgery and had a long rehab. The knife sounds cool (as much as treatments for brain cancer can be cool).
    If you ever need help, I’m a call away.
    Sending love and disappearing masses.

    • Laurie:
      The great thing about the CyberKnife procedure is there is NO recovery time. Most people can get up and leave and even go back to work. There’s very little pain, just a slight headache. I was a little dizzy afterward, but it didn’t last too long. I occasionally have a slight twinge, but nothing even worth taking medicine. It’s a medical miracle.

  2. So sorry cuz. I don’t know how I missed this news. Maybe I didn’t and I lost it to my memory lapses during my migraines. Anyway, I love you and now really wished I could have made the trip when you were out this way. Please keep me in the loop with messages. I really do care.

    Love,
    Pam

  3. Genyne
    This is Sandra E of your ASC ’79 Scotties. Ginny M told me about your diagnosis. It sounds like you are getting REALLY excellent treatment.But oh honey, I’m so sorry you’re having to go through this! May I share this with the reunion committee? Can we help?

    Big, BIG hugs
    S

    • Hi Sandra:

      It’s been such a long time. Hasn’t it? It’s okay for you to share this blog. It’s posted publicly. Hopefully, someone will read it and demand that their doctor give them a chest X-ray, even if they don’t smoke and never have. Right now, doctors only do routine chest X-rays for smokers and former smokers. I’ll be moving to Georgia in the spring. We should have lunch sometime.

      G

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