The Plan

If we were to move, it would be so hard. There is tons that has to be done, and, well, only us to do it. You can't just plop a house on the market, at least not where we live.  You have to prepare it and stage it.  It is supposed to gleam and glisten and sparkle.  For heavens sake, it must not look lived in!

For 35 years, the woodpeckers and squirrels have had their way with the back deck, and so we did get that re-built last summer. Check.  And we got the erosion channel on the front slope seen to. Check. What could possibly be left?  *Sigh*

If we were to move, what would we do about the downstairs bookcases, the ones with those runners mounted directly into the wall. Do they have to come down? If they do, the room will have to be patched and painted. All the articles say the front door should be painted, too, but what else? And how many pictures can you leave up on one wall when you show a place, anyway, 'cause I'm pretty sure we have too many. If we take them down, well, then that wall will have to be painted. Do we have to paint the entire house?

If we were to move, we wouldn't want all this furniture. Is it worth the hassle of selling it, or does it all just get donated? Can I deal with the annoyance of a garage sale?

If we move, can my husband and I possibly agree on what to keep and what to get rid of? He really wants to downsize, but if I hold up any single item and ask should we get rid of this, he doesn't want to let it go. Not one thing

If we move, we won't have to spend so much time traveling to our grandchildren.  We could help our daughter and son-in-law with child care emergencies; they could wipe the drool off our ever-aging chins. We could catch some of the grandchildren's activities before they grow all the way up. (Suzie's already in middle school!) They could join us for movies and parade-viewing and afternoon tea. We could enjoy our son-in-law's cooking.

If we move, we'll have to interview agents, and keep the house and yard immaculate. We will have to, you know, actually organize the endeavor. We will doubtless have arguments, er, I mean discussions. And it's been 23 years. I think we have roots we don't even know about that will hurt when they are pulled.

If we move, what would be the Master Plan?  Yeah, right. We never have a Master Plan; we never even have a Minor Plan. To have a plan takes making Big Decisions. I am not one for Big Decisions; I prefer to get positioned and let them make themselves. Steve is quite willing to make Big Decisions provided he can re-make them at any given time. No, there is no Master Plan. However, we do have the kind of plan that works for us, the Wishy-Washy Plan.

The plan is to jump around and do everything we need to do to sell this house, but, aha!  here's the genius, but not buy a new place. We'd rent. We'd rent and give ourselves a year to discover, explore, try it out. If it works, hooray!, we'll buy a home in the neighborhood. If not, OMG, what will we do? Who knows? We'll come up with a new plan.

Meanwhile, if we were to move, would I need every scrap of quilting fabric I own. Yes! Yes, I would! Steve would have to get rid of some golf stuff instead. That is, if we were to move.

How Do You Know You're Alive?

There's sky diving and bungee jumping and motorcycle racing. There's that thing where you hold your breath and try to go deeper underwater than anyone else has without dying. There's bull riding and bull racing (you know, the men running in front of the bulls in Pamplona, the idiots). There's Parkour, every seven-year-old boy's dream. Don't forget hang gliding and hurricane chasing. Does the adrenaline rush verify existence? What's it take?

I have a young friend who is a record-holding slack-liner. There she walks between mountain peaks, wind buffeting her, rope swaying under her feet. She'll take a little bounce on the line; for heaven's sake, is she bored? She climbs sheer rock with nothing but pitons and boots. I can't even make it to the top of a climbing wall. She says no one else can say how much risk is too much for her. For her, the exhilaration outweighs the danger.

Allow me to digress. I promise to return to the question.

Have you ever felt exasperated with your computer? I mean, are you human? My computer crashed a few weeks ago, but is that aggravating enough? Noooo. Nope. It turns out my back-up drive failed last December. Oopsie. To add insult to injury, when they transferred my stuff to a new hard drive, oh, well, Microsoft Office – originally installed from a no-longer-to-be-found disc – was lost. My docs transferred to the new drive, but there was no Word to read them. (I was saved a heart attack as all my blogs were saved to Dropbox.) Microsoft had a two hour wait in their phone queue, so I sent them an e-mail. Fortunately I did not expect a response so I was not disappointed. I was NOT going to buy a new Office Suite for an old computer, so what to do? Hello, Open Office, you beauty, you!

A week after fussing with my documents, I went to transfer a CD onto my drive, and, oh, iTunes was gone. The tech thought my music had also disappeared, but I showed him where I'd seen it. He reinstalled i-tunes and my own tunes. It took me two weeks to get close to the starting point, TWO WEEKS of thorough, time-wasting exasperation. Now everything is saved to the lovely Clouououd. (I have a metaphor as the Cloud as God, but perhaps that's a topic for another Post.)

Let's talk about the bank. We are so spoiled. Gone are the days when a bank drive-through window was the great convenience. (Of course, also gone are the days when I walked into my bank, and the teller said, “Good morning, Mrs. Simon.”) Do you need cash? Pull over to the nearest ATM. Easier still, get some back at the grocery store. But if someone sends you a big check (you can only hope), or you need a to your bank. We put the errand off. We think, it will be easier to do it tomorrow. It niggles away at the the back of the brain, I have to go to the bank. How can one errand so irritating? What has the bank ever done to us that we find it so annoying?

Oho, then make a phone call, any call to any institution. Listen to the menu, push a button. Listen, push. Listen, push. By the time you're put on hold, you're so ticked off, you are screaming at the muzak. When a person finally answers, you are so fed up and grateful at the same time, you almost forget why you called.

Traffic. Need I say more? What are all those people doing out on the road? Don't they know I want to go somewhere? Don't they know I have to park? Don't they know I'm in a hurry?

Now, remember our original question? You don't have to be an adrenaline junkie to know you're alive. You don't have to do anything at all. Every daily irritation is existential proof. You know you're alive because you're annoyed.

Cancer: Genetic Testing

The instructions I received before (free) genetic counseling (and my insurance covered the testing) was that there would be no drinking water, eating anything or chewing gum during the hour to hour and a half appointment? What?  I mean, first off, would you NEED to eat and drink during an hour and a half?  And second, WHY NOT?

One also has to fill out an extensive family history form. I left a lot of blanks. My folks didn't report to children about causes of death much, even if they knew them. I thought my form was sparse, but the counselor said it was pretty good. What I particularly noted was that while there wasn't a ton of cancer in my family, people were dropping like flies from heart attacks! All that tasty pastrami, liver pate and tongue took their toll.

The reason my doctors strongly recommended genetic testing is that I am of Ashkenazi (eastern European Jewish) decent. One in 40 Ashkenazi Jews carry the BRAC 1 or BRAC 2 (breast cancer) marker. This figure is somewhat higher than the general population.  Okay, I took notes as fast as I could, but the exact percentage difference fell through the cracks.  Gimme a break!  

The counselor noticed on my family history is that we don’t have a lot of girls which may be the reason why we don’t have a lot of breast cancer.. The other thing was that breast cancer in the 30s and 40s tends to indicate presence of breast cancer genes.  Our instances of breast cancer had later onset.  One mark for me on the positive side of the ledger.  (Or, hmmm, the negative side, depending on how you read it.  Oh, never mind!)  

While BRAC 1 and BRAC 2 are the most common genes, there are a total of 24 genetic markers!    Yikes!  They’re not really genes, though, they’re genetic mutations, and they’re discovering more all the time!  Is this a Darwinian way of winnowing the human herd?  That seems harsh.  

Should I have one of the high risk cancer genes, my direct blood relatives would each have a 50% chance of being carriers.  Along with breast cancer, these genes indicate a higher risk of ovarian (but not cervical) cancer. Not many males get breast cancer, but they would be at a 20%-50% higher risk of prostate cancer.  

A lot of research has been done on the four highest-risk cancer genes. Less is known about the others. Whether you choose to be tested for any or all, it's done at the same time with the same sample, no further fuss for you. I choose to be tested for only the top four:

             Gene                                            Associated Cancer

BRAC 1 and BRAC 2          45%-87% increase in breast, ovarian, pancreatic, prostate and                                               male breast cancer

CDH1 breast,                       39%-52% increase in breast, gastric and colorectal

PTEN                                   Up to 50% increase in breast, thyroid, uterine, colorectal, kidney

TP53                                    no % assigned, significant increase in breast, sarcoma, brain (!),                                              adrenocortical, and others (and OTHERS?!!) 

The most surprising thing I learned during counseling was that even if you carry the BRAC 1 and 2 genes, there are two methods of treatment with EQUAL OUTCOMES. Yes, if you are young and want to be sure you don’t have a lifetime of worry ahead of you, you may opt for a mastectomy. That removes absolutely all risk of breast cancer and, obviously, metastasis. However, you can also opt for twice-a-year mammograms, MRIs and clinical exams, keeping on top of the beginning of any cancer. The outcome to your health and life-expectancy are the same. Wow, I did not know that.  I was surprised at what a relief that was.

You will receive one of three possible results.

Guess what? Testing is not about blood at all. Now my veins like to play roll-away from a needle, and no blood flows out. Sometimes the needle hits the vein wall which hurts, and no blood flows out. If I’m pretty well hydrated, a skilled phlebotomist with a pediatric needle can zoop right in there, but otherwise, I’m in for a prolonged, multi-stick session. Score! They don’t take blood for genetic testing.

They don’t take a cheek swab either. This is not a crime show. Nope, instead the counselor opened up a compact case to reveal two small tubes with mouth pieces. You have to fill each one with spit. At least now the no-gum/water/food rule makes sense: they don’t want anything to taint the results.

You spit and you spit and you spit. Although I’m sure this would be quite a treat for the counselor to watch, she turned to her computer. My job is to fill about a ¼ inch space in each tube with saliva. It takes a while, and it’s messy. The box of Kleenex I thought was for weepy patients (and it might well be) was what I used to keep spittle from running down my chin. Not much did, though. The task was daunting enough for me to make sure that no drop is wasted.

The first line is just above the white label area.

You have to fill it to the black line.  

The counselor showed me how to seal each tube as it was completed. Now I wait.

There are three possible results.

          Positive: a clear genetic mutation with associated cancer risk.

          Negative and winner of the prize: no genetic mutation.

          Variant (under 10% of the results, and the one most likely to make you crazy): This is           not the basis for a movie plot. It means they found some weird genetic change,  

          something they’ve never seen before and don’t know what it means. I have already

          decided that if I get a Variant result, I am totally blowing it off.

And wait.

Still waiting -- for two to three weeks.

But I am not going to make you wait because that’s just the kind of person I am. In any case, my results came in early, and I only had to wait two weeks.  I am not a mutant 

Most of my relief is that I don’t have cancer-related genes. The rest of my relief is that I won’t have 50 million more medical appointments to deal with! Yay!

Have I been bored in the weeks between completing radiation and getting my genetic test results? Oh, no, I have not been bored. During that time a very dear friend, one for whom I hold Powers of Attorney, climbed up on the railing of the Good Ship Sanity and fell overboard into the sea of massive infection and mental confusion. You know, just so I don’t run out of material to blog about. Oh, yeah, that’ll be next.

Cancer: Radiation

 Each day is a calendar square, each square empty except for my afternoon appointment written neatly in purple, the occasional lunch date added in black.  Dance classes are marked at the top of the day columns.  Nineteen carefully blocked days with 15 minutes extra noted every Thursday.  Thursday is the day I meet with the radiologist.

Is it a Space Pod?

Today’s Science Lesson: (there will be a quiz later, so listen up).  The Space Pod is the machine that effects radiation treatments.  Right, right, it isn’t really a Space Pod (in case you were in any doubt), or a Radiator or a Zapper (I’m just sayin’).  It’s a linear accelerator.  Electrons from an energy source shoot (accelerate) down a tube where they impact an angled metal plate.  98% split away as heat; the other 2% radiate photons (radiation) down the adjoining tube and spray them at my breast.  You can also send the un-split electrons down the tube.  Electrons kill cells really well, too, but they don’t penetrate very deeply and so don’t need a metal plate to catch them on the other side of their target.  Radiation hits any stray cancer cells that might have avoided surgery and damages their ability to repair themselves or to multiply.  It hits normal cells, too, but they are better able to repair themselves and so heal afterwards

The linear accelerator is HEAVY and so is located in the basement of the Cancer Care Center, but  there are faux skylights in the Rad room so it always seems airy and pleasant.  In fact the Rad area is about the most pleasant place on earth. The staff learns my name, respectfully Mrs. Simon and never Ann.  There’s never more than a few minutes wait for treatment.  The changing room (I remove my top and bra and put on a short hospital gown) and waiting room are quiet and comfortable.  There is hard candy in the outer office, but in the inner sanctum of the radiation anti-chamber, there are Dove chocolates.  All questions are answered.  Everyone strives to make me comfortable.  It’s like a spa -- well, almost. 

This skylight has dogwoods.  The other one has cherry blossoms.

  

When I’m called into the anti-chamber, the merest possibility of radiating some extraneous body part is prevented as they check my face against the picture taken during preparation.  (They promised not to put it on the Internet.)  While I eye the bowl of chocolates, I state my name and birth date and identify the left breast for treatment.  They’re thorough in all things so measurements and body placement are precise and are adjusted every week as needed. 

When I lay back on the oh-so-narrow table, the nurse and assistant help me remove my gown and drape it modestly over my right side.  I place my arms in the brackets.  If I like, the technicians wrap my arms in heated towels although I've declined since the temperature hit the high 80s.  The technician and nurse carefully align my tattoos with the sensors.  Once in position, I must not move.  I am an itchy, twitchy person, but they are strict!  They tape the funny black plastic box over the stickers on my tummy.  Everyone leaves the room (but me), and the gurney slides me  into the Radiator, er, linear accelerator.   

The space wings rotate around me and lock into position.  The square wing seen on your right swivels out of the way.  It can be used as a soft-tissue CAT scan.  The rounded wing on your left, is the one that will fry my cells.  It is angled so the rays travel through my breast and hit a metal plate beyond.  It has a rectangular screen with a smaller screen inset, and it if from there that the photons whoosh out.  

I hear a mechanical hum; the nurse’s voice through the speaker directs, “When you’re ready, inhale and hold your breath.”  Holding my breath pulls my heart millimeters out of the radiation beam.  If I exhale before directed, the sensors in the black box detect the movement, and the radiation automatically stops. The first zap is 21 seconds (not that I’m counting, but 21 seconds is a bit of time to hold your breath, I can tell you); the second discharge is seven.  The wings rotate to a new angle.  I hold for 12 seconds and then eight.  The gurney slides out of the Radiator.  Repeat once a day for 18 more weekdays.

2^nd Treatment:   I can feel occasional sparks along the surgical lines where the nerves were cut.  They are trying to re-grow, but the radiation keeps killing them off.  The little twitches tell me the invisible, unsensed rays are working. 

6^th Treatment:  My consultation with the doctor goes well.  My breast is sometimes sore, but there is as yet almost no reddening of the skin.  Depression hits on and off.  Today I probably feel down  because I slept badly last night.  I have been obsessing over the oncotype test which showed an 8% chance of metastasization years down the road.  This weighs on me.  For the first time I get why they call it the Life with Cancer Center.  I had thought it a horrible name, stressing that cancer would always be part of your life, but I am constantly aware that death shadows me. 

(Later that day)  I had lunch with my neighbor, a nurse and another breast cancer survivor.  She told me that breast cancer migrates to particular places.  They will regularly check liver and lungs.  Should the cancer metastasize, they will catch it early.  I feel the black cloud lifting.

9^th Treatment:  It takes me five minutes to drive from my garage to the hospital parking lot, seven if the traffic’s bad.  How great is that?  I’m fine in the mornings and still happily flail my way through ballet class, but I've been pretty tired after the last couple of treatments.  I’m very tired of the whole cancer thing.  I’d like to do something else now, please.

11^th Treatment:  Today the nurses attached a cone to the accelerator.  (Well, they called it a cone; it’s an open-sided box with a metal ring set in the side that points at you.) They positioned it a couple of inches from the lumpectomy site.  They drew a new target on me and put on a new sticker (new sticker, yay!) in preparation for my last three sessions.  These are called booster treatments and will consist of electrons (rather than photons) bombing right up against the lumpectomy site, the area of greatest risk.  (Remember how the linear accelerator works?  I told you there would be a quiz.)   Yesterday and today I have not been at all tired.

After my treatment, I asked the nurse more about the oncotype test.  I didn't take notes, but I believe this is the gist:  stray cancer cells can be in our bodies.  They just float around suppressed by the immune system until or unless something triggers them to multiply.  More relief!  It’s a coulda, sorta, maybe scenario rather than a screaming you’re gonna die! scenario.  I no longer feel doomed.

12^th Treatment:  The effects of radiation are cumulative, and I feel the burn.

13^th Treatment:   While I’m in the Zapper, I think, hey, I’d like an end-of-treatment, sticker-off ritual.  I think of wearing gauzy scarves, skipping through a field of daisies a la Isadora Duncan, stripping off the stickers and strewing them to the wind.  I shout, "Sticker off!  Sticker off!" and move in slow motion.

15^th Treatment:  My fatigue level is up and down.  This morning was the first time I did not finish dance class which was sad for me.   After class I had a phone call, and I would just like to say that my friends should put off having crises until I’m done with mine.  I mean, what’s up with that?!

17^th Treatment:  I've been quite fatigued (as opposed to sleepy) for the past three days. Today, aha!, was the first of my Booster treatments.  They fitted the “cone” onto the Radiator, snugged it up close to my lumpectomy scar, and the big, dopey electrons dripped out.  (You know that’s a metaphor, right?  The electrons are tiny, they don’t drip, and if they did drip, they’d fall right on the floor since the cone is targeted from the side.)  Anyway, the important thing here is that it signals the beginning of the end.  I have the weekend to rest (except the Perfect Grandchildren and their attendants are coming to town, and my sister is having a big anniversary party and then brunch the next day), and then I’m in for my last two treatments.  The skin right under my nipple is really red and sore. I have gotten no further in creating a plausible sticker-off celebration. 

I’ve been tired all weekend.  Like really tired.  Like napping tired, and Inever nap!  I am tired of being tired, and now my lumpectomy site is stinging a lot.  I say Bleh! 

19^th Treatment:  I was stoked all day because this is my LAST treatment!  Then driving to the hospital, I was a little sad, maybe because I will no longer be actively fighting the cancer.  Anyway, I was over it as soon as the treatment was over.  The nurse gave me a certificate of completion almost as if I’d actually done something!  I got instructions for follow-up care (continue the same breast care for a couple of weeks) and will make a follow-up appointment in two months. 

We grilled steaks tonight in celebration. My private celebration was in the bathroom (alas, no Isadora Duncan) as I unpeeled stickers and chortled, “Sticker off!  Sticker off!”  The newest sticker will have to wait a bit as tugging at it pulls the sore skin.  However, its day is coming.

Next week I enter the black hole of genetic counseling.  There seems to be very little to available about that in advance.  One quirky thing about it is that the genetic counselor got her masters degree at my old college.  What do you think of that?  She will probably test, and I hope they are able to take the blood right then.  It is so hard to go back and back and back some more.  Once they draw the blood, I guess, deducing from the oncotype test, it will take about 10 days to get results back.  We’ll see, or rather I’ll see and report back to you. 

Sticker off!

Cancer: Preparing for Radiation (the simulation)

They TATTOO you!  Yes, tattoos.  And it hurts!  I asked for a kitty, but they only do dots.

Then they put stickers on your tummy.  It’s a three-year-old’s dream.  

You lie back on the CAT scanner gurney, hands secured in brackets overhead a la Fifty Shades of Gray.  When you are positioned just so, they draw arcane lines and dots on you with black and red magic markers. Who knew the preparations for radiation involved so much body art?    

After the radiologist approves the signs and symbols, the technician tattoos all-but-invisible guideline dots, one under each arm, one on the sternum.  How do people bear those beautiful tattoo sleeves?  Yikes! 

Next comes the black box which is positioned on the tummy stickers.  Of all the strange things that diagnosis and treatment entail, having a black plastic box taped to my belly is right up there.  Will I disappear inside the machine so they have to use the black box to find me?

The gurney slides into the CAT scan.  This time a nurse, rather than a robot, tells me when to breathe. She takes x-rays while I hold my breath, and some while I don’t.  The radiologist will analyze these to determine if holding my breath also pulls my heart out of the radiation beam.  That is worth knowing!  I breathe -- or not -- on command.  I do not move no matter how itchy the corner of my eye gets.  For once in my life, I am more than willing to be perfectly obedient. 

This appointment is called a radiation simulation. It’s not a simulation as far as I can tell, since the radiation does not take place in the CAT scan or even in the same room.  The process is rather a graphing and mechanical preparation.  The red rectangle they drew around my breast shows exactly where the x-rays will redden and burn.  There is no guessing, and there will be no stray radiation.

Once I’m up and dressed, I’m shown to an ordinary exam room where the nurse gives me “the talk.”  No, not that talk.  It is a talk about rules.  There are always rules once you are plugged into the medical world.  In this case, there are creams and powders and when to use each.  Vitamin C and Co-Q10 and high C multivitamins are prohibited during and for six weeks after treatment (antioxidants feed cancer cells).  I’m not permitted an underwire bra.  She says to wear a cami or a sports bra.  A cami?  She's kidding, right?  I’d expire from bouncing!  But, see, this is why god created catalogues.  

I discovered a soft, cotton bra which has both darts and front gatherings (lots of support) with a front clasp of four hooks and eyes.  I also learned that sports bras have come a long way since I last tried one. 

Stretched out, tested, prepped, and shopped.  I’ve cleared my calendar for the month.  I will back out of activities if I suffer the vaguely warned-about fatigue (which will also, you know, be a good excuse if I just don’t want to do something.)  I will show up five days a week for 19 treatments.  

I’m more than ready; I’m eager.  Nuke the damn cells; nuke 'em all! 

Cancer: Medical Oncology

There are good surprises and bad surprises.  A month after my lumpectomy, I sat down with my oncologist expecting to get a prescription for tamoxifen .  Instead, I got a bad surprise.  

I have never been an overachiever.  All through school, my report card had the comments, “Does not live up to her potential.”  (In my defense, I think they were looking at the wrong potential.  I’m just sayin’.)  Ace my SATs?  No.  Four point GPA?  No.  Have a glamorous and high-paying career?  Nooooo.  Get a high grade on my tumor?  Yeah, here’s where I exceeded expectations.

The early biopsy indicated a Stage 1, Grade 2 cancer, but when the entire tumor was removed, the pathology was a Grade 3.  [Science lesson for today:  Stages 0 to 4 refer to how far the cancer has spread.  I was at Stage 1.  Grade describes how much the cells within the tumor have changed.  Grade One means the cells look pretty normal and grow slowly.  Grade Two cells are somewhat deformed and grow faster.  Grade Three cells are both abnormal and aggressive.]  

A Grade Two with my other signifiers -- clear margins, no lymph node involvement, accompanying biopsy data -- indicated I did not need chemo, but a Grade Three meant reevaluation.  Instead of hustling an IV in my vein to pump me full of life-saving poison, my oncologist sent my tumor to a special lab in California. 

Wait.  They saved the tumor?!  I envisioned a Raiders of the Lost Ark warehouse filled with shelf upon shelf of squishy blobs floating in formaldehyde, perhaps intermittently wriggling with an alien life force.  I was almost sad when nurse-friend informed me that all excised tissue is saved by being frozen.  

They pulled my tumor and sent it off for an oncotype test.  This is a relatively new method of analysis that examines 21 genes in the tissue (Pretty skippy!) and predicts the probability of the cancer’s recurrence anywhere in the body ten years into the future.  A low score means you go straight to radiation therapy.  An intermediate score means more indecision as you and your doctor figure out what treatment to follow (and you’d probably want a second opinion which means more difficult waiting).  A high score and you have to face chemo.

The test takes 10 business days, and the doctor cleared personal time to see me 14 real days later.  I worried the results would not be in by then, but his next available appointment was a whole month off.  I am incredibly lucky that he cared enough to set aside time for me.   

I had already scheduled my radiation simulation for the afternoon of my oncology appointment.  There wasn't time to cancel, but in the four hours between appointments, the oncologist had already called the radiologist!  We went ahead with a consultation, but if I needed chemo, radiation had to follow it, and any preparation done now would have to be re-done.  There was no point taking extra rads with a possibly useless preparatory CAT scan.  We put the simulation on hold.  I waited. 

I felt like I’d been thrown in monopoly jail:  no passing Go, no collecting $200, no moving forward:  just sitting idly in my holding pen trying to mentally parse out possible futures.  Fourteen more days waiting.  Waiting is all fear and anxiety.  It sucks.

I’ll take pity on you:  I won’t make you wait until my next blog post for the results.  At 3:30 on a Saturday afternoon,  just as I was counseling myself that I’d waited 12 days and could make it two more, the oncologist called.  “I have an early Mother’s Day present for you.”  My oncotype was low.  Low!  Low was happy and safe and unambiguous.  No worrying, no waffling, and best of all, no chemo. 

We were finally able to discuss medications.  If you’re, ahem, younger, you get Tamoxifen (an estrogen blocker).  I am not younger.  I am on an aromatase inhibitor.  (It’s not called an estrogen inhibitor. I don’t know why.)  I got my prescription and with it my Get Out of Jail Free card.  

The Monday after Mother’s Day, I called for my radiation simulation appointment.  No one was ever happier about it than I!  

Cancer: Surgery

So I had a week before surgery, just enough time for a quick trip to see the Perfect Grandchildren (still so very Perfect) before Steve drove me to the hospital for my big morning.  They make you get there forever early, but before I entirely gave up hope,  I was called to pre-op.  The nurse there asked if I knew what procedure I was having done. 

“A lumpectomy with removal of the sentinel lymph nodes.” 

The next nurse asked.  The anesthesiologist’s assistant asked.  The anesthesiologist asked. 

My surgeon asked.  Then she told me I was going to do great.  Really?  All I was gonna do was lie there unconscious.  Yeah, I guess I can do that pretty well.

The person who was in charge of wheeling me to the operating theater asked.

 “Don't you people know yet what you’re doing to me?” 

Unfortunately this person didn't realize I was kidding (yeah, sometimes I should watch my sense of humor).  She explained -- rather at length -- why they asked everyone.  She told me I’d have to answer again when I got to the operating room.

Maybe they asked when I got there, maybe not.  I can’t say.  The anesthesiologist or perhaps her assistant -- I wasn't taking notes -- gave me something so I wouldn't get anxious.  People were praying for me.  Candles were being lighted.  There was a shamanic healing group going, and I’m pretty sure a drum circle had convened.  There’s a kid who’s doing a breast cancer run and is including my name.  Go, kid, go!  I figured all my bases were covered, plus I had complete confidence in my surgeon.  Was I supposed to be anxious?  

She fed my IV anyway and wheeled me out of my cubical.  It was just like being on an episode of “House”!  I lifted my head from the gurney to see pre-op rooms slide by.  Big double doors opened before us, and we turned down a hall, and then, and then I definitely wasn't anxious; I wasn't conscious.  

My nurse friend says, no I was conscious, and I would have answered what my procedure was.  I would have gotten myself off the gurney and up onto the operation table.  Okay.  If she says so, but I have no recollection of any of it.  It makes me wonder, though, what do they do if you can't answer your question?  Are you sent to a remedial pre-op study group for slow patients?  Do you have to have your operation after regular school hours?

I guess I answered okay, because I woke up in my same cubical.  The surgeon reviewed procedure (lumpectomy and removal of the sentinel lymph nodes already!) and told me how well I’d done.  Well, she did well.  Thanks to a nurse dosing my IV, the surgical wounds troubled me very little. 

Before I was sent home, the nurse gave me a little rectangular pink pillow.  “Some people like to hold it under their arm,” she said.  I thought it was the stupidest thing I’d ever seen.  Why would I want to hold a little pink pillow under my arm? 

Let me tell you, I LOVE my little pink pillow.  Even after a month, the scars occasionally smart rather like a mild rug burn, and that little pink pillow can be placed to change the pressure points.  I love it almost as much as I loved the stuffed elephant my father brought me when I was seven after I had my tonsils removed.  I used to burrow my nose into it to block out the smell of the ether.   (Yeah, ether.  I know, right?)  I slept with that elephant for years, and I foresee a long, comforting future with my little pink pillow. 

The two main things to know about post- surgery are that (1) people brought food.  They brought a lot of food.  They brought really good food.  Hey, the damn operation was almost worth it.  (2) I am not a person who is good at being tired, but I found myself lying on the couch every afternoon, too weary to think.  Thank goodness for junk TV which was all I was able to attend to. 

Ten days later, I went for my follow-up appointment.  My surgeon told me how well I’d done.  (Again, didn't do nothin’.)  She cautioned me I’d be tired for from four to six WEEKS!!!  She reminded me to see the medical oncologist.  I’d forgotten entirely about the oncologist, the fellow who would prescribe either an estrogen blocker (like tamoxifen) or an estrogen inhibitor to ward off future breast cancer.  He was a busy fellow, but I scored an appointment two and a half weeks off.  Oncologist for meds in the morning, radiologist to set up my radiation simulation in the afternoon.  Check everything off my list in one day.

Except when I saw the oncologist, I learned that the tumor held a nasty secret.  

Cancer: Diagnosis Part II

Waiting is the worst. Then the results are the worst.  As warned, my MRI showed a lot of little marks.  Cysts here, cysts there, blebs all over the place. (I have no idea what a bleb is, but the pathology report says I have them.)  It noted the scoliosis in my lower spine which I have long known about and showed -- woot! -- minimal degenerative changes; it showed some old scarring in my right lung.  And then, because life wasn’t complicated enough, it showed two nodules in my lung, nodules where no nodules should be.

I completely freaked.  The nurse who should have reported the findings to me was away for the day, and the woman who I spoke to left me with the idea that these nodules (even after I cleared up my confusion that nodules weren't the same as nodes as in lymph nodes -- and what would they be doing in my lungs, anyway?  I was distressed and confused.), those nodules could be cancerous. 

               

“But it has nothing to do with the cancer in your breast.”

Oh, thanks, lady, thanks a lot.  Like it’s comforting knowing that my lung cancer isn't related to the cancer in my breast.  WHAT IS WRONG WITH YOU?!  From there it didn't matter that she told me the scarring was nothing and the nodules were probably inflammation.  Nothing mattered except that lung cancer is very, very bad indeed.

 I knew better than to go trolling on the internet, but that didn't stop me.  I can be as much of an idiot as the next person, and I was.  After about half an hour, I realized that reading about how awful lung cancer is was not helpful, and I set off for quilting workshop.   Normal, yes, normal is what I needed, and what could be more normal, more apple pie, than quilting.  I lasted an hour.

When I returned home, my husband and my wonderful friend had researched the Cleveland Clinic and Web MD -- you know, decent, informed web sites -- and reported that there was a lower than 4% chance that I had lung cancer.   They read that something like 90% of stuff (I’m using the scientific term here) in the lungs showed up when people were imaged for something else, like I was.  To put it even more clearly, a lot of you are walking around with little medical things in your body that you should be glad you don’t know about.

The mean lady (or, more accurately, the clueless lady) from the doctor’s office (and she is the only bad experience I've had so far) said the surgeon wanted me to schedule a CT scan of my chest for a better look at those nodules.  Just, you know, to be sure.  My appointment was 48 hours later.  (See?  Dire medical issue = fast medical attention.)

But, hey, that left a whole 24 hours in between.  No need to be bored.  I had a consultation with my radiologist.

My radiologist, what can I tell you?  He has a big intellect and puppy dog eyes.  Who wouldn't love that combo?  To top it off, he likes gin and tonic, a thing perhaps not discussed in all radiological consults, but, hey, that’s the way I roll.  He reassured me that the size of the lung nodules made them almost certainly insignificant and promised me the short, 3 1/2 week course of radiation.  I was to line up a preparatory simulation three weeks post-surgery, and he’d see me then.

The rules for the CT scan were firm:  nothing to eat drink, chew or swallow from midnight the night before.  No gum, no meds, no nothin’.   I asked if the scan was going to be with contrast, explaining my vein issue.  The scheduler didn't know but, bless her, suggested I drink two glasses of water before going to bed which I did.  The next morning, the needle slid in like silk.

The technician warned me that the dye, as it infused, made patients to feel like they’d wet their pants.  What kind of weird side effect is that?

Since the CT scan is a three dimensional picture, you can lay on your back.  Your arms are placed just so, and into the machine you slide.  A female voice orders, “Breathe in.  Hold your breath.  Relax.”    And do you know what this proved to me?  Forget science fiction:  the robot revolution has already taken place, and the robots won.  You think you’d resist?  You would not; you do exactly as the robot says. 

Half way through the scan, I felt warm liquid seep down my urethra, and I would have guaranteed you, I WET MY PANTS!  I mean, it felt like I was laying there with warm, wet pants.  Did I move?  Did I protest?  I did not!  The robot was ordering me to breathe and hold, and in case I was tempted to resist, the female robot took a break only to be replaced by what psychologist probably determined was more a authoritative male robot voice.

“Breathe in.  Hold your breath.  Relax.”  The stakes are high, and you are not going to blow it by disobeying your Robot Overlord.   

The scan was over.  I had not, in fact, wet my pants.  The nodes were reported as inflammation, probably left from a bronchial infection (ah, that time I had walking pneumonia).  The test would be repeated in six months for safety and to ensure my aggravation factor did not drop below the requisite level. 

I called the surgeon and scheduled my surgery.

Cancer: Diagnosis Part I

 I deliberated long and hard about posting this entry.   Not everyone shares my sardonic sense of humor.   (In fact, have you noticed, some people have no sense of humor at all.)  I do not want to upset or offend anyone.  I was hesitant, even with this disclaimer.  However, a friend of mine with a similar experience urged me to go through with it, so here we go.

I became apprehensive when they completed my follow-up mammogram  by walking me down the hall for one with ultrasound.  The ultrasound exam room had a lot more fancy equipment, but the exam table was the same.  I lay down on it and turned on my right side so the technician could view my left.  Her wand looked a rather like a grocery store scanner, and I asked her to turn the screen so I could see the image.   As she scanned my breast, even I could discern the distinct mass on the image.  I wanted to schedule surgery right then; if there was any kind of lump in me, I wanted it out.  The technician reasonably told me that they had to learn more before digging around. 

Two days later I was back at the hospital, a capable nurse explaining how, once my breast was numb, the guide wire would be inserted and the biopsy tool would follow, making a loud click-clack each time she took a sample.  Three truly loud clickety-clacks followed, with me craning my neck to watch the screen.  I know, I know, not everyone wants to see their medical tests being performed, but I like to KNOW!

When they called me with the results, I walked around in shock.  “I have a lump in my breast, and it’s cancerous.  I have a lump in my breast, and it’s cancerous.”  After 24 hours the news sunk in with a thud:  “Holy $*#%!   I have breast cancer!”

I had a Stage 1, non-aggressive, invasive ductal carcinoma.  In person-speak, this means the cancer began in a milk duct and then seeped out.  The lump was small and slow-growing (relatively speaking.  I learned that a on average, a breast tumor doubles every 100 days!).   This was good news as far as bad news goes. 

The speed with which medical things happen is in direct correlation with the severity of the illness.  It took me less 24 hours to get an appointment with the breast surgeon. (And just a brief note of appreciation here:  the nurse at my primary care office called me back within an hour with a recommendation that matched one from the hospital, and my physician called me that evening just to talk!)   

My breast surgeon is fantastic.  She is both skilled and nice.  I would much rather go out for cocktails with her than bare my breast, so to speak.   Her first step to removing all doubts about my diagnosis was to send me for a breast MRI.

The breast MRI is a unique and bizarre test.  I mean, I’ve had MRIs before.  I am not claustrophobic.  I crawl inside that tube with complete serenity.  I get so comfortable, in fact, that the MRI drum beat puts me to sleep.  But a breast MRI?  Oh, so different.

First of all, as I found out when I arrived at the hospital, this was an MRI “with contrast.”  I discovered that “with contrast” means they inject dye into a vein so that the MRI can be taken while the die infuses and defuses.  This might not matter for you, but my appointment was first thing in the morning, and had I known, I would have drunk two glasses of water when I got up.  When I’m dehydrated, my veins collapse like deflated balloons.  It took two technicians and four tries to get the line inserted.  And, yes, I watched every try.   It didn’t hurt much, but it was damn frustrating.

You walk into the MRI room with your IV lines dangling and arrange yourself on the platform which is slightly tilted head down.  You can’t lie on your back because then your breasts will pancake.  To get clear images, you have to lay face-down with a headrest rather like that on a massage table.  Unlike a massage table, however, there are two square openings in the platform at chest level.  “Square,” the nurse affirms, “must have been designed by a man.”  The square holes are HUGE:  designed by a man for sure.  You fit yourself into the holes, and the technician gently tugs your breast through and positions them for an optimum portrait. 

There you lie, your round pegs dangling through the square holes.  The platform slides into the MRI tube.  You feel like the star of some weird porn movie.  The machine clicks and ratchets and pounds. Your sternum hurts because it is taking all your weight between the square holes; your forehead hurts because your head is heavy.  Between rounds, you try to subtly adjust yourself, but the nurse cautions you to hold still.  This is a half hour when people pray or meditate or visualize or, you know, write blog posts in their heads. 

The test was to confirm that the cancer had not spread.   My surgeon warned me that a lot of little things show up when they do an MRI, things that are not important and they are not looking for.  She warned me not to freak out when such images were reported.   The results were due back in two days.
Waiting is the worst; at least, you hope it is the worst.  

The Mother's Day House

When my Perfect Grandson was just a little guy (instead of the grown up seven years he is now), he had a Mother’s Day House.  In his Mother’s Day House, there was a swimming pool and an amusement park where he rode scary roller coasters.  He produced movies in his Mother’s Day House, thrilling, adventurous movies in which he starred, performing deeds of daring do.  He could push a button in his Mother’s Day House, and it would transform into all sorts of glorious things like a giant robot or a space ship, things particularly useful for an alien.  [He still insists he is an alien, one from the planet Pieroid, continuing his long-held fascination with pie. (See my Blog post of August 5, 2010, when he was two:  Pumpkin and The Pie Boy.)]  There was a lot of candy in his Mother’s Day House, but here were no rules and no bedtimes.  The only person allowed to join him was his sister until he realized there was no on to cook for and take care of him.  He then conceded that his mother would be allowed to come  perform those tasks.

 A few years ago, his mother (my daughter) and I began to talk about -- no, not psychiatric help for the boy; he’s charming --but about escaping for a week together, perhaps in the city, perhaps at the shore, perhaps at a dude ranch, you know, wherever.  We acknowledged that a full week was unlikely to happen but thought we might clear a weekend.  We tried date after date, but she had conferences and children’s activities not to mention the actual, time-consuming children.  Steve and I went on vacation.  We had ballet tickets and dinner dates.  The eleven hour travel time between us was daunting.  Even scaling our fantasy back to an overnight began to seem extravagant.

Planning for our getaway, though, became an entertaining game in itself.  We might go to shows and museums.  There would be extensive shopping.  We would go hiking, heck, maybe even horseback riding.  A gourmet dinner would be followed by two, maybe even three drinks and there would be endless talking giggling.  All right, we already talk and giggle pretty endlessly on the phone, but this time we would be doing so in person!

Time passed.  We began to yearningly call our little vacation, our Mother’s Day House, a beautiful but perhaps unachievable dream.  But we are nothing if not tenacious, and, hey, they’d be here for the holidays anyway.  Our men corralled the children, and a couple of weeks after our birthdays, we drove off to the Ritz Carlton hotel, aka our Mother’s Day House.  

While ambitious planning had been exciting, here is our actual agenda.  We:
     had lunch,

     went shopping for an hour, couldn’t find anything, got bored and went back to our hotel,

     took a nap,

     got massages and drank a leisurely cup of tea,

     returned to our room to find a complemetary birthday surprise of a fat piece of chocolate cake and a full bottle of iced champagne,

     walked around the pricey mall in which the hotel is located and gasped and laughed at the prices,

     had dinner including a martini each after which we conceded we couldn’t drink any more,

     went back to the room, ate the cake and packed up the champagne to take home to the men,

     watched two hours of The Big Bang Theory,

     went to sleep in the most amazing Mother's Day House beds.

During  that 24 hours, no one interrupted us, no one needed anything from us, and everyone around us strove to please us.  We didn’t do anything electrifying, but we did exactly as we pleased, and that is the beauty of a Mother’s Day House. 

If you don’t hear from me for a while, you will know that I am in my own Mother’s Day House.  I’ll be on the balcony with a martini in my hand overlooking a pastoral landscape on Planet Pieroid, or I’ll step out one of the back doors onto a raft and head down (or is it up?) a windy river, shooting rapids through exotic canyon land. Possibly I’ll be having a candlelight dinner with my husband at a place very much like the Inn at Little Washington where the chef will create amazing dishes just for us, or I’ll actually finish the red and white queen-sized quilt.  Yeah, that WILL be in my Mother’s Day House! 

And I hope, friend, that you find a beautiful Mother’s Day House of your own and that sometimes it becomes real.