Kicked by an Angel

Maybe it was the full moon. Or a simple coincidence. On two separate occasions last week, I had two different friends tell me in their own way how much I meant to them. One was via text basically telling me I was a great friend and the other was told to me like this :

“So I told my sister how happy I was that you had come back to work for me, how much I loved having you around. And then my sister asked me if I had told you that.”

And in that way, she told me without having to actually come out and say it directly.

Because it is really not easy to  stop the course of  normal conversation to tell a friend or family member just how special they are to you. It can be very difficult and feel awkward; the thoughts are there but the words themselves get lodged in your throat like when you’re half-way through a peanut butter sandwich on wheat and you realize that someone has already finished off the milk..  Once you get them out, though, you can change someone’s life. I felt great this week knowing that there are people in the world who appreciate me.

Ironically, the day before this happened to me I was sitting on my deck thinking about how proud I was of my 16 year old.  His ability to get through three knee surgeries, keep his grades up and his wits about him, when he walked in from school. In a moment of courage I decided to speak up, pushing aside any insecrurities about sounding foolish and sentimental, and I called him out to the deck.

“What?’ he said, poking his head out the screen door.

“I just wanted to tell you how proud I am of you and what a great kid you are.”

I waited for the eye-roll and the “whatever” that might come to let me know that I was being silly but instead he smiled and said, “Oh, Thanks.”

There are many things I have done very wrong as a parent over the years–I’ve screamed until I peed my pants (literally), I’ve made idle threats, pretended to listen and realized too late that I had missed something of grave importance.  I’ve used foul language and called my kids names and even spit in my son’s face when he was little to teach him not to spit at people( this tactic although deemed by experts as “the worst thing you can do”, actually worked). I have beaten them at games and jumped around in a victory dance, let them watch too much TV, eat too much candy, and get too little sleep. These slights in my parental ability are evident and uneraseable–some are character flaws others are just plain learning as I went along.

But here was something I did right.  And it has dawned on me recently just how simple it all is.  If I tell you you’re great, than most likely you are going to try to be even greater.  Because my friend told me that it pleased her to have me working for her, of course I will try even harder to be a proficient worker.  And my other friend who told me I was great makes me feel like I want to be a true friend to her always.  I don’t want to disappoint these friends.  As I feel my son would not want to disappoint me.  If your kids know you expect excellence from them and that you think they are amazing then guaranteed they will try even harder.

I made a pact with myself when I was diagnosed with my breast cancer, that I would not let an opportunity pass to tell someone how I felt about them.  As I get further away from my treatment I can feel that urgency slipping away, so I have to remind myself just how important this is.  Because we can never assume that anyone knows how we feel until we tell them. Never underestimate the power of words.  Tell your kids and your friends or even the cashier at your favorite Dunkin’ Donuts today how much they mean to you.  Trust me, it will only feel awkward for a second–after that it’s pure enlightenment.

I wanted to give an update to those who are wondering what’s going on with Cal’s knee surgery.  First, the background:

In the Fall of his freshman year, after Excel Orthopedics diagnosis him with OCD of the knee (OCD stands for big words that mean he has a dead bone behind the knee cap), must quit High School hockey team.  Waits to see if it will right itself. It doesn’t.

So we go to the head of Orthopedics at Children’s hospital who says he needs surgery. Cal had his first surgery last May 5th,2009.

Rehab and recovery over the Spring and Summer. Is unable to try out for Freshman baseball team.

Back to check progress in September–no go.  The bone did not grow.

Second surgery in October of this year. Four compression screws are placed in knee in hopes that it will stimulate growth. Hockey is out of the question. But that’s ok because it is baseball that is his true love and he is sure he will be ready by the spring.

Recovery and rehab over the winter.

Back to re-check in February 2010–an MRI shows that the bone has grown back! Cal contacts the high school baseball coach, volunteers time for his clinics and offers to be manager of the team.  Coach says he can try out when he is able.

But there is still pain– a new pain– and swelling.

The swelling starts to spread to his thigh. Back to the doctor, an emergency MRI, and back the next morning to Children’s.

They find nothing.  The OCD is healing and they can’t understand it.  They draw fluid to test for infection or Lyme Disease, and send him home.

Cal voluntarily puts the knee brace back on and walks with crutches because he is in so much pain. He is unable to help with the baseball team as the new players try out.

Two weeks later back, to doctor who throws up his hands and says the Lyme test was negative and we need to see a rheumatologist as he may have Arthritis.

Phone calls indicate that the rheumatology department will call me in 10 days to set up an appointment in June. This is unacceptable I say. Sorry Madam, they will call you.  They don’t call.  For 2 solid weeks I fight with the ortho office to get me into Rheumatology ASAP and I hear “we will do what we can, someone will call you back.”

Luckily, there is a cancellation, so they can see Cal. It is the end of March.

For four hours, three doctors probe and poke and question but they don’t understand.  So they send us for a contrast MRI.

The following Monday we go for this MRI. Cal, my rock solid 16 year old, winces in pain and lets slip a tear as they inject the fluid into his vein that will shed some light on this ridiculousness, “It hurts” he says, “I know,I’m sorry” I say.

One more week passes and the baseball team has been chosen.  Scrimmages have begun.

It is now April and back in the surgeon’s office he tells us that the new MRI indicates a tear in the meniscus on the opposite side of the knee that they must have missed in the other 2 MRI’s.  Surgery is needed but he is leaving town for 2 weeks.  We schedule surgery for May 5th.  Exactly a year from the first surgery.

I tell the doctor yesterday, before they wheel Calvin away, that he better take his time and look around inside the knee to see everything that is going on. His smile is as condescending as it could be. “Stupid lady” it screams.

Recovery room Conversation:

Doctor: Was it shown that Cal had Lyme Disease?

Me: No, it was negative.

Doctor: I’d like to start him on the medicine anyway since I can’t understand why there is so much swelling in the knee.  We fixed many small meniscal tears and smoothed it out.  Something is irritating the cartilage and I can’t figure it out.

Me: If he had Lyme it would be a little late now wouldn’t it.

Doctor: Not necessarily (complete bullshit).

Me.  Let me ask you something.  Isn’t it possible that he had an allergic reaction to the compression screws placed in the knee?

Doctor: (Look of enlightenment) It’s possible.  Yes, quite possible.  As a matter of fact we found the head of one of the screws that was still in the knee that hadn’t broken down.

The fact that he doesn’t make the correlation between the errant screw-head and the irritated cartilage baffles me. But I go along with his Lyme theory long enough to send my husband to CVS to fill the prescription.

When he handed me the prescription I couldn’t believe what I was seeing. “You must have picked up the wrong meds”, I said reading the label.

It was Doxycycline–the same medicine Cal has been on since February for his acne.  I guess it is also what they give for Lyme Disease. Since Cal has been on this drug already for 4 months,I imagine he DOESN”T have Lyme Disease. What is even more disturbing is that it is in his records all over the place that he is on this med.  They asked me 10 times at the hospital what medicine he takes.  Had I not looked at the bottle, I would be double dosing him everyday for 4 week–400 milligrams a day instead of 2oo.

This doctor has been the head of Children’s Orthopedics since 1974. I think it is time he retired.

If it was the screw causing the problems let’s hope that this is it. Hopefully, now that it is gone, he can recover and get on with his life. He has missed Freshman and Sophmore years in sports which is a huge detriment when it comes to colleges but hopefully he can pull it out for Junior and Senior years.

One thing is for sure.  I have never been more proud of my son.  Throughout this two years (as well as the 2 before, dealing with my cancer) he has remained upbeat and strong.  He has stayed away from the drugs and alcohol that is so prevalent in his circle of friends.  He has not become angry, withdrawn, or let himself wallow in self-pity. All of which he has every right to do. I am not sure I could have stayed as positive.

So that’s it.  maybe you should all say a prayer today that he heals quickly, just in case, a little insurance never hurts.  Maybe, just maybe, he can play Summer Baseball.

Last week, during our first day of  lounging on the warm sands of Myrtle Beach, my oldest son asked me why I hadn’t been in the ocean yet, knowing that usually I am the first one in. Even the coldest North Shore waters of Gloucester in June are not enough to stop me. I generally feel that if you are going to take the trouble to travel to the beach you HAVE to go in the water.  Otherwise you might as well stay in your backyard on a lounge chair.

“I’m not hot enough yet,” I said.

On the second day, he asked me again.

“What’s wrong with you?  Why aren’t you going into the water?” he said, shaking his wet head at me like a dog.

“Knock it off,” I said fending off his watery attack with my raised hand, “I just don’t feel like it.”

“Why?”

“Jelly Fish.” I said,thinking about how every other year when I took my morning run along the beach I would see their gelatinous bodies washed up on the shore every few feet knowing how much pain these beautiful creatures could inflict, their long sinewy tentacles poised for attack.

“Mom, I haven’t seen any Jelly Fish on the beach this year.”

“I know, neither have I,” I said, “But that doesn’t mean they aren’t IN the water.”

“So you mean to tell me,” he said, with all his 16-year-old wisdom, “That you are going to base your decision on  fear of what may be in the water?  Of what might be?”

“I guess so,” I said, and went back to reading my book.

I did eventually go in the water a few times over the week, but I didn’t linger–in and out– but I went in.  But Calvin’s words stuck with me, because isn’t  that what I have been doing over the past few years? Living my life in fear of what might happen?  My cancer is like those jelly fish.  A few years ago we saw it all with our eyes, the tumors ,the tests the results, as clear as those masses washed up on the sand. But now those masses are gone, there is no physical evidence anymore.  The cancer is gone.  But is it really?  It could easily be swimming in the currents of my blood stream, waiting to sting me again, translucent and beautiful, its tentacles trying desperately to spread out. Because of this possibility, of what might be,  I take a drug everyday, Tamoxifen, that I hate, that makes me fat and puts me into menopause and causes joint pain and can lead to uterine cancer– but I take it, just in case.

But these decisions on what medicine to take and how long to take them are also based on scientific tests, so they must be right. Right?  The decision to take medicine is not only based on what might be it is backed up by numbers and percentages and facts.  So I know that if I don’t take the Tamoxifen then there is a 40% increase in the likelihood of my cancer returning, and  I base my decision on that.  It’s  also the reason I agreed to taking Herceptin, the drug that messed up my heart, since my Her2/neu positive cancer needed that drug to remain at bay.  Unfortunately though, the doctors and the scientists just can’t seem to get this stuff right.

According to a study out last week in the New York Times, scientists are now discovering what all along I feared; the tests they do on tumors to see what their markers are (mine was Her2/neu positive and ER/positive) are now being considered untrustworthy.  This means that the drugs used to treat these particular types of cancers, which have many side effects, may be unnecessary.

HER2 tests, for instance, can give false-positives up to 20 percent of the time, wrongly telling women they need the drug when they do not. Five percent to 10 percent of the time the tests can falsely tell a woman that she should not take the drug, when she should.

“The science is still evolving,” Dr. Bloss said. “What was true last year may not be true this year.”

My original tests were done at a local hospital in Winchester.  When I decided to continue my treatment at Dana -Farber Cancer Institute in Boston, I asked on numerous occasions if they had re-tested my tumors to make sure they were Her2/Neu positive.  My oncologist and my breast surgeon said they had but I never felt like they actually did a re-test.  Answers were quick and vague and from their answers it seemed to me that they just looked over the results from Winchester Hospital.  This study shows that different hospitals test differently.  There is no standardized tests available.

The two large national studies of Herceptin for women with HER2 positive early-stage breast cancer were just starting in 2001 when Dr. Perez, of the Mayo Clinic, a principal investigator, had a moment of truth. Women were having HER2 tests at a variety of places — community hospitals, major medical centers, national labs. Dr. Perez decided to retest tumors in a central lab to confirm the results.

The outcome stunned her and her colleagues. Twenty percent of the first 119 women whose initial tests indicated their tumors had excess HER2 turned out not to have it on retesting.

“We all felt, ‘Oh boy, we have a problem,’ ” said Dr. Wolff, a study investigator. “This was huge.”

So the studies were modified to require central labs to retest all the tumors.

Yet the discordance remained — one-sixth of women told by local labs that they were HER2 positive were not on retesting.

I was also found to be ER positive. Which means my tumor was fed by estrogen.  For this reason, I take Tamoxifen for 5 years.  Again, this is based on what I assume is the initial testing done at Winchester Hospital.  The article states that there are discrepancies with those tests as well.

Like the HER2 tests, other molecular tests for breast cancer also have problems. Those tests, for estrogen receptors on breast cancer cells, determine whether cancer will be thwarted by drugs that deprive tumors of estrogen. They can be wrong at least 10 percent of the time. Some estrogen-depleting drugs, while generally safe, increase the risk ofosteoporosis and, depending on the drug, can also cause joint pain and increase risks of stroke and cancer of the uterine lining.

Estrogen receptor tests are a muddle, noted Dr. Edith Perez, a breast cancer specialist at the Mayo Clinic in Jacksonville, Fla. Quite a few tests are being used, but Dr. Perez could not ascertain exactly how many or how good they were in predicting whether a tumor would respond to estrogen-depleting drugs.

So guidelines were set up, but still they found discrepancies.

There are all sorts of reasons why different labs can get different results, said Dr. Mitch Dowsett of the Royal Marsden Hospital in London and a member of the United States committee that formulated HER2 testing guidelines.

In borderline cases, pathologists can disagree. Or stain can pool in areas where a tumor was crushed or damaged, making it look, to inexperienced eyes, like a positive stain.

Twelve years after Herceptin was approved for women with advanced breast cancer, “we’re still trying to refine the testing,” said Ms. Pellegrino of Genentech.

It is too late for me to do anything about the Herceptin.  If my testing was wrong and I took the Herceptin unnecessarily that I can not change that now.  I will caution any one reading this who is in the beginning stages of their cancer, though, to make sure you demand to be tested 3 or 4 times until they get it right.

As far as the Tamoxifen goes, I haven’t decided yet.  I could stop taking it now, I could dive into that water of faith and hope to swim for years without the recurring sting of cancer.  I will probably ask to be re-tested at some point but then it is up to me.  Do I base my decisions on fear of what might happen or do I trust in science and doctors who are now seeming to me to be quite baffled about how to handle cancer in all it’s forms? Or do I say the “hell with it”, throw off my towel and run head long into the waves, taking my fate into my own hands?  I would  very much like to stop living in fear of what might be, I believe there is a true freedom in that way of living and the only real way to find peace.

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I did not want you in my chest

It felt like an intrusion,

To have you underneath my skin

Alien -like in your protrusion.

At first you hurt me,caused me pain,

My neck looked like a road map.

You made it difficult to breathe

My energy was sapped.

Eventually I trusted you,

Saved my veins from collapse.

And with each hospital I did visit,

I would always ask,

“Can you use my port today,

It saves my arm from snares?”

And the nurses said with saddened eyes,

“Oh no, we wouldn’t dare.”

But when I got my chemo,

You were always there.

To swallow up the poison,

That made me lose my hair.

You made yourself accessible

when blood they took to test.

You were dependable and painless,

For which I felt quite blessed.

Oh port-o-cath, Oh port-0-cath,

your time has come to pass.

No longer resting in my chest

The end has come at last.

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Someone mentioned recently that she found it hard to believe that I could say this was “the end”.  This woman who also has cancer thought that there is no way I can ever put this behind me and that “every decision I make from now on will be affected by my cancer.”   This may be true to some extent.  Obviously I am still on Tamoxifen, which I hate, because it deletes my body of estrogen which in turn makes me hold on to about 10 pounds of extra body fat.  And obviously my body has been altered by my mastectomy and my heart has been compromised, but, as I wrote to her:

I am making a conscious decision to say that today, with the removal of my port, I will no longer be defined by this cancer.  I am hereby putting a period on my cancer sentence.  And if the cancer comes back, then I will deal with it as a new phase of my life.  For now, for me, this is the end of  a two-year hell-ride and I am officially calling it quits!

I am approaching the 2 year anniversary of when I started my Chemotherapy treatments; it was the Spring of 2008.   A lot happens in 2 years and yet  some days, it feels as if it never happened–almost.  Here is a piece for a Grub Street class that I will be shopping out for publication.  It is written in “Collage” form and really sums up how Chemo turned my whole world upside-down while I tried to create normalcy for my family.  It’s kind of long and many parts you may recognize from other pieces — which is why it’s called a “collage” piece.  I welcome your feedback, good and bad, as to whether or not you feel this is worthy of publication.  Thanks.

Running Through Chemo

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Through my passenger side window I see them in their cars on their way to work.  They drink coffee and talk on cell phones.  I sit in silence while my husband drives.  We listen to the droning talk of NPR on the car radio. He does not ask me how I am feeling whch is good, because I don’t know how I would answer.  He does not ask me if I am scared which I’m sure he thinks would be too obvious.  Since it is to be my first treatment, I don’t yet know about the long wait in the waiting room surrounded by men and woman in various stages of illness and treatment.  I have yet to see the overly sunny infusion room where leather recliners line the walls like a furniture showroom. I haven’t met Heidi.  I don’t know yet that Heidi will have to wear protective clothing when she injects me with the Adriamycin because if she gets it on her skin it will burn a hole in her flesh. I do not know this yet–or the feeling of sick-panic as I watch this toxic liquid go into my veins. Nor do I know yet how much I will come to love Heidi and her smiling face and infectious laugh. I haven’t learned about the ultimate trust you can put into another human being—one you have just met.

What I do know is that the car is barely moving through traffic and that we might be late and that I have to pee because a friend told me that the best way to avoid getting sick with chemo was to stay well hydrated.  I know that my husband looks tired. I  know that he didn’t mean what he said at dinner last night when I asked him what he learned from the book I gave him, “The Breast Cancer Husband.”   I know he didn’t mean it when he said he learned that if “he didn’t leave me before, then he certainly wouldn’t leave me now.”  I know he meant this to be re-assuring.

Now I can see the hospital entrance and the concrete ramp walls as we pull up into the garage – it is still so early in the morning, barely 6:30, and only the parking attendants are there.

#

What exactly are the side effects, Doctor Anderson?

The biggest problem is the nausea and vomiting and/or diarrhea with loss of appetite, but we can control that with other drugs like Zofran, Compazine, Reglan, Emend and Ativan and we’ll give you a steroid to increase your appetite.

But I don’t even like to take aspirin.

#

It is a sensory onslaught. The snap of the needles as they access your port, the crackle of ice packs, the ripping of tape.  It’s the sweet sticky smell of the cold crimson poison coursed through your veins, warm packs on the infusion sight, dry mouth, metallic tasting water that doesn’t quench your thirst, queasy stomach; the salty taste as you swallow your tears… You close your eyes, try to listen to music, open your eyes, try to read a book, sleep, wake up, smile at the nurse, then it’s done.  You go home and take massive amounts of anti-nausea medicine. Some make your heart race, some put you to sleep, some make you cry, but they are all supposed to make your stomach not jump around.

#

There is of course the hair loss –fourteen days after your second infusion your hair will fall out.  Some people just go ahead and shave their head– it’s a way to have some control.

Maybe I won’t lose mine.

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My baldhead is shiny and prickly at the same time. When I run my hand from my forehead to the back it feels as smooth as crushed velvet but when I rub my hand back upwards to the scalp it feels as scratchy as a cat’s tongue.  It is ugly and beautiful and embarrassing and empowering. It screams to the world that I have cancer and it whispers to me at night that I may not survive. It is shapelier than some and tinier than most. There is no hiding under my baldhead.  Every wrinkle, line, acne scar stands at attention on my face.

#

“This was a really bad idea,” I say to my husband.

There are so many people around us, hundreds of children and parents clamoring to buy overpriced popcorn, candy, soda and pretzels, before the show starts. Pushing us around. Their close proximity is making me sweat. I don’t know why we are here, especially during April vacation.  Our usual trip to Myrtle Beach cancelled this year because of my stupid cancer.  Why did I think this was a consolation prize?  The Greatest Show on Earth?  Hardly. My kids are far too old at 14 and 11 to be here. Even the 8 year old seems aggravated.  My head is itchy.  It’s too hot. Everyone is staring at my head. Everyone knows I am wearing a wig.

“Calvin!” I say to my oldest son, trying to get his attention.

“What?”

“How does my hair look?” I whisper at him over the noise.

“What?”

“How-Does-My-Hair-Look?  Do you think people can tell it’s a wig?”

He stares at me for a moment while I wait patiently for his words of reassurance and encouragement. Words like “No Ma, it looks great.”  Or, “You can’t tell at all.”  But instead, as if I were a department store mannequin, he reaches up with both hands, grabs my hair and shifts it to the right with a slight yank.

“There,” he says, “That’s better.”

#

There will  be a decrease in your white blood cell count called bone marrow suppression but you will give yourself a shot after each chemo treatment to increase the amount of cells, which will cause joint and muscle pain. Because of your repressed immune system you should stay away from crowded places like schools.

What about Nursing Homes?

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“I’m sorry mom, but I think this is really it. You won’t be going home this time. It’s not safe for you anymore.”

“That’s all right dear, don’t worry about me. Everyone is very nice here. I just wish she would leave,” she said pointing at her roommate in the curtained area next to her bed.

“She seems nice,” I lie, glancing at the woman who blocked my way on purpose with her wheelchair when I tried to enter.  She probably sensed my disgust, my utter impatience with the aged.  My sister-in-law never understood how I would much rather spend a day with a roomful of children than the elderly. She always preferred the opposite – but, sometimes we have no choice.

“Listen, Mom, I am not going to be able to come visit for a few months while I am getting chemo.”  Could she see the relief on my face? After 25 years, I had grown weary of this trip to Hingham from the North Shore – now I had an excuse, carte blanche from my oncologist.

“I never lost my hair, you know,” she said running her crooked hand through her still thick locks.

“Right, Mom, that’s because you had radiation, not chemo, remember?”

“Still as thick as ever.  You have beautiful hair, you know that? Do you know how beautiful you are? You don’t do you?  I never thought I was beautiful.  Tom Callahan used to tell me I had the most gorgeous legs –but I never believed him.”

“I know, Ma. Will you be all right without me for a while?  Maureen and Karen will still come, and I will call, but you know, the germs and all.”

I was surprised by her strength when she grabbed my hand, her rings cutting into my skin, “I worry about you every day – it’s not fair, you are so young, and I am so old.”

“Oh, please don’t cry. Really I will be fine, look, I am strong, really.  It’s no big deal.”

#

Neuropathy is another side effect – a numbness that occurs in the hands and feet; this can be permanent.

But how can I run on numb feet?

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Most days, I walk a tightrope of sanity. Running is the velcro that secures my sneakers to that rope. It helps me avoid the tumble into the abyss of insecurity and paranoia that waits to swallow me. While I run, my head gets cleared of all the negative thoughts about my friends and my family.  It allows me the time alone with my feelings to understand that life can be hard but that there is so much to appreciate as well.  It’s free and quick and allows me to eat cookies –lots and lots of cookies. Some days as I run through the streets of my suburban town, I list my blessings, as my mother always tells me to do.  I have 3 beautiful and healthy children, a house, a family,  and some truly supportive friends, My feet and knees are still intact so I am lucky in that respect.  This feeling of thankfulness particularly happens on cool crisp fall morning runs.  Although I now run year round, it’s the fall days that bring my spirit back.  The late morning sun warms my back while a brisk breeze cools my face. There is nothing like jogging through newly fallen leaves and inhaling the smell of burning wood to make you appreciate the seasons and remind you why you live in New England.

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What else, doctor?

The combination of A/C, Taxol and a full year of Herceptin, can sometimes be toxic to your heart, causing congestive heart failure, but it is rare.

Wait.  You know I do triathlons.  What happens if my heart is damaged?

Well, if you want to get rid of the cancer then you have to take those chances.  Besides you should be fine –you are an athlete.

#

“Maybe we should go home,” my 11-year-old son said to me as I stopped at the stone wall at the top of our street, my hands on my knees.

I can’t catch my breath.

“No, let me just sit here a minute.”

Aidan sat next to me, putting the library books down on the ground between us so he could rub my back.

Shit.

“Do you want me to run home and get dad?”

“Let me think a minute.”

Something’s wrong.

“You know what, let’s just head back home.  I need to lie down, ok? We’ll go to the library tomorrow.
“Sure, Mom.”

#

I wasn’t expecting the phone call so soon as I drove home from the hospital after my MUGA heart scan –a nasty test where they take out some of your blood, mix it with

radiation and shoot it back into your veins—to see if my heart was failing. I wasn’t 20 minutes away when my oncologist’s name came up on my cell phone. “You were right,” she said, “They called me from radiation.  Your Left Ventricular Function has dropped significantly, looks like we are going to have to stop the chemo for a while, maybe for good.  Go on vacation and relax.  We’ll revisit this at the end of the summer.”

#

We know now that the heart damage is permanent but we need to finish the treatment. Let’s pick up where we left off.

I don’t want the weekly Taxol –just give me the year of Herceptin—there are far less side effects.

Well, we really recommend the Taxol.

No, I’m good.

#

“She doesn’t recognize you.”

“Mom, it’s me, I haven’t been here in a while.”

“Have you ever driven with, Franny?’

“I am Franny, Mom.”

“You are pretty.  I like your haircut.”

“Mom it’s me.”

“Have you ever driven with Franny?  It’s a tough ride.  A tough ride.”

“Mom, are you comfortable? I’m sorry I haven’t called in a while.”

“Tough ride with Franny, have you ever driven with her?”

“Well yes, I have as a matter of fact…and she certainly always gets you there on time, now doesn’t she?”

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Bet you never thought you’d see this day.

What day?

Today is your very last infusion

You mean, that’s it?

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“This place is bad enough in the daytime –it’s seriously creepy in the middle of the night.”

“Can you help me dress her?” my sister asked me.

“Maureen, the funeral home will do that.” I knew they were on their way, they only gave us two hours with her before they called the mortician.

My mother’s roommate snored in the bed next to us and a woman was screaming across the hall for somebody “anybody” to help her.

“I am not sending her out of here in someone else’s nasty bathrobe, she would never forgive me.”

I laughed at this. Maureen had never been more serious.

“Black or Brown belt?”

I looked down at my mother, whose body, even in the few hours since her last breath, had begun to contort. She didn’t look peaceful to me.  She looked as if she had struggled against the inevitable right up until the last minute.

“I should have come to see her more.”

“Well you couldn’t,” my sister said, pulling a tan jacket out of the closet and holding the belt against it to see if it matched, “besides, it’s too late now.”

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When the IV line beeped, signifying my last bag of medicine was empty, and my port was de-accessed, I headed for the elevator, said goodbye like any other day and walked through the garage to my car. I left that building that I had visited every 3 weeks– sometimes more often than that– for the last year and a half, the halls of which signified a beacon of hope in an otherwise bleak forecast to my future.  I left, looking for a parade in my honor.  Of course, there was no parade, just the garage attendant who took my money and stamped my ticket like he had every other day.

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Leaves fell like tickertape as I ran through my suburban streets last week –and I learned something about living in the moment.  I realized that if I think about how much farther I have to go until the end of my run or even visualize a hill that I will be ascending a few streets away then my run becomes very difficult.  I become tired and weak, my legs feel heavy and, I begin to think that I won’t make it through the whole route. If, on the other hand, I concentrate on how my legs feel with each footfall and how pleasant the cool air is against my face, or how much I love the song that is reverberating in my ears, then I feel invincible –like I could run all day.