November Project for My Kids

Yesterday was my 50th birthday. Fifty years of life --I feel so lucky.

The day was quite mundane really. Nevertheless, I thought it was the best day ever because I am still alive.

The notebooks you see on the left hold a record of many of my life's events. I have been writing about my little and big experiences since I was seven years old. These are not award winning stories nor are they very exciting --proof that my life has been very ordinary. They do however tell my story as I experienced it.

These stories have never been read by me before. I wrote them and left them as they fell onto the page. So, I never corrected any mistakes. Now that I am reading these stories, I cringe often at my spelling atrocities and at other writing errors. Now, I think perhaps I should have done some proofreading, but then again writing the perfect story was not the purpose.

I did not write about every single event, obviously, but, what I did write offers me guidance as I put together the time-line of my life.

As I read my stories, I notice that my writing serves the same purpose that it always has. When I have a problem with someone that I am trying to work through or some event in my life is emotionally stressful, I write. It is my therapy.

For the entire month of November, I decided to commit myself to a writing event called NaNoWriMo. This event inspires people to write a novel. Now, this novel can be anything the writer wants to write about. The best part is that it doesn't have to be good. It can be an untidy mess of words sprinkled on numerous pages failing completely to tell a coherent story. The purpose is to get people writing. Within that writing, a story will be created that maybe, just maybe, can be turned into a wonderful story --perhaps even a published novel-- someday.

My NaNoWriMo story has been my own story grown from the pages of those three notebooks. Once I am gone, my stories will be gone with me, so participating in this event has forced me to bring forth my untold experiences locked inside my brain. It also has given me the opportunity to create a better retelling of some of those stories told in my notebooks. I am preserving my life that will otherwise perish. My hope is my children will get to know me a little better through this effort.

This 50,000 or more word creation is going to be for my children and for my children only.

My present word count is . . . 29,451.

I think everyone should do this for their family. And, don't wait. It could one day be too late.

December 4, 2014 Novel Update --I did it! National Novel Writing Month

50,418 words

You won!

The Green Mile

Over a week ago, I began thinking about “the green mile”—not about the story line from the novel and the subsequent movie but about the meaning associated with those words.  “The green mile” seemed to be a good way to convey the fear I was feeling as I waited for the results of my brain MRI.      

Google Images

The Green Mile is a book by Stephen King which, in 1999, was made into a movie starring Tom Hanks. The story is about a man on death row convicted of murdering two girls. In both the book and the movie, a prison guard recounts the events of how this man impacted his life. In the end, the prisoner is forced to walk along a lime green floor which ended at the place of his execution. Hence “the green mile” can mean a person’s walk to their death--at least that is the way I think of it.

I am like any prisoner on death row forever at the mercy of their captor. In my case, it is cancer and not the judicial system that has sentenced me; I am not facing this death sentence for any crimes committed, but I am facing death’s permanence. I imagine the fear and despair of a person about to be executed must be similar to mine–at least initially –especially if they are innocent or in the case of victims held by evil people. With every scan, I have no idea if I will get a reprieve or find that my death date has been set.
I don’t think there is a word in the English language that explains adequately how I have felt throughout the last week and the first part of this week. My anxiety about this scan seemed greater than my prior experience with other scans. I am sure this was due to my belief that losing my ability to think or to recognize my family would be the cruelest way to succumb to this disease.

Here are a few synonyms for fear:  angst, anxiety, concern, dread, jitters, panic, uneasiness, worry, aversion, agitation, consternation, disquietude, discomposure, faintheartedness, foreboding, presentiment, distress, fright, qualm, trepidation, timidity, chicken heartedness, apprehension.

I feel and have felt all of those words. None, though, are powerful enough to explain my emotions completely. The fear can be paralyzing preventing even the most mundane activity from occurring.

Certainly others not on death row facing a death not associated with old age have also had these same emotions. If you can imagine how the recent men beheaded by the terrorist group called Isis, the holocaust victims, people sacrificed to their gods, young men and women in war, and most recently the woman in Oregon, Brittney Maynard, who plans to take her own life under the “death with dignity” law of that state feel or felt then you have some idea of how I feel.

Physically my breathing seemed shallow; my shoulder and neck muscles were tense; my appetite diminished; my emotions were fragile. I am involved in a game of Russian Roulette. The gun is pointed at me. When the trigger is pulled, will this be the shot fired releasing the bullet within the chamber or will the chamber be empty?

I nearly had myself 100% convinced my breast cancer had spread to my brain. I played the audio over and over in my mind of how I would respond if one of my doctors or nurses called with news of brain metastasis. Somehow, I felt thinking this way would make it easier to cope if it were true. Isn’t there a saying “hope for the best, prepare for the worst”.  I may seem like a negative Nellie, but there is always a bit of optimism hidden in my thoughts somewhere. So, some moments I played the other audio in my head. The one where I receive fabulous news that my life can continue on the same course it has been for another 3 months until the next scan.

My nerves were so on edge about the impending phone call I decided to put my phone on silent. I thought not hearing the phone ring would protect me from the full-force of any horrific news. I felt a sense of control by being able to get the news on my terms when I was ready to handle it. I thought I would be able to listen to the voicemail and figure whether it was good or bad news based on the message received. If I was told to call to discuss the results, I would know it was bad. If a good message was left, my fears would be relieved without having talked to anyone.

For two days, I left my phone on silent. Every so often I would pick up my phone and look for my missed phone calls and voice messages. Monday, in late afternoon, a missed phone call appeared. My heart raced. I clicked the unlock button and viewed the call. It was my husband. I took a few deep breaths to relieve my panic. The hours moved on and no phone call came about my MRI. I was convinced it must be bad news. In my experience, bad news always comes late in the day when a doctor has no more patients to see, and he/she sits down at their desk and starts returning or making phone calls.

This whole week I grieved because of the things I have not finished. I haven’t written the letters to my loved ones I want to write (I am finding those so hard to begin) or finished little projects around the house. Most importantly, my youngest is only 11 –still too young to lose her mother.

On Tuesday, phone still on silent, I went outside with my daughter to practice tennis, leaving the phone on the counter. Once finished with our fun, I walked in the house and passed the phone several times. When I finally had the courage to look at my phone, I saw that a new voicemail message appeared on the screen. My daughter retreated to the back porch sparring herself of any bad news I might hear.

“Can I do this?” I said to myself. “I have to”.

I accessed my voice mail. My nurse practitioner began to speak with not such an enthusiastic tone in her voice.  I listened.

Then I hear . . .

“Lisa, I am looking at your scan right now. It appears to be clean”, the nurse practitioner said.

Good news CAN come late!

I paced the floor and listened to the rest of her words.

I retrieved my daughter from the back porch. “Good news”, I screamed. We hugged and jumped up and down for probably 10 minutes.

I am not dying today, and I am not dying tomorrow. I am walking “the green mile”, but it is a long walk for now.

SCANS-GRAPEFRUIT

Treatment #25 TDM-1 #8 Sept 29th

My appointment with the doctor and the infusion that followed were uneventful. I truly prefer it that way.


I love grapefruit. One of my fond childhood memories involved eating grapefruit at my grandmother's house in Tampa, Florida. Since I was on a new treatment, I thought that maybe I could once again enjoy this fruit. But, sadly once again I was told I could not eat the fruit or drink its juice. Grapefruit can interact with many drugs - prescription and over-the-counter. Follow this link to find out if any drugs you are taking may be causing your drug to be less effective or even toxic. Always ask your doctor about food interactions with any new treatments.
http://www.fda.gov/downloads/ForConsumers/ConsumerUpdates/UCM292839.pdf


Scan #2 for TDM-1 October 15th
My scan results still read "No Evidence of Active Metastatic Disease"!  Isn't that fantastic?

Treatment #26 TDM-1 #9 October 20th

My head is still having strange tingling sensations that have moved from the back of my head to my left temple. The back of the head may be the result of a pinched nerve in my neck. My scan showed nothing unusual - thankfully. The tingling sensation at my temple is more concerning. It could mean that there is something compressing the trigeminal nerve inside the skull. This nerve splits into several branches and exits the skull spreading out to the sides of the face. There is one on both sides. There are several causes with one being a tumor that can cause pain or tingling around the eye, cheek, lips and mouth.  My favorite nurse practitioner thought it was worth taking a look at my skull and brain to see if there was any metastasis of breast cancer to the area along this nerve. This of course sent fear through me.

Though efforts were made to have the MRI department fit me into their schedule that day, it was not to be. Instead, it was decided that an MRI would be done in Wilmington. If there was anything found, the scan would be read again by the radiology department at Chapel Hill.

Next post, I will tell you the results.

Losing Time

Time
I need it.
Will I have enough?

Troubling, tormenting, terrifying thoughts,
miserable me,
thinking as I do.

Fear grabs me and refuses to let go --
haunting me,
scaring me.

I fear having
no more
time.

No impact on humanity.
No clever book written.
No painted picture from my own fingers.
Moving . . . no one.

Will I have enough time?
To move someone, anyone?
So my life is not forgotten.

Writing –
a quiet, possibly futile attempt
to leave something of myself to the world.
It is all I have to offer.

Thoughts in my head
trapped by fear.
Fear that the words won’t match the emotions I feel.
Fear no one will be moved.
No one will care.

Good.
Bad.
It must be done.

If I wait too long,
there will be no
time.

My mother lost her time.
Too sick to do, too sick to plan  
gone – within a month.

All her memories,
all her words –
hidden forever
within her.

Twenty-two years ago
my mother died.

We abandoned her.
Leaving her there
in the hospital
alone,
never to wake up.

After surgery,
a blood clot in an artery
began robbing her vital organs of life-giving oxygen.
The doctor said, “I can make her conscious,
so you can say goodbye”.

Would she want us to? Would I want that if it were me?
“No”, we said.

I regret leaving her
in her artificial slumber –
in a quiet, cold room
to die
alone.

My grieving father
wanting to go home to be near his alcohol and cigarettes
needed me
I thought.

My mother --
motionless,
no longer throwing back her head laughing,
no longer providing comfort when I needed it
lie dying.

I did not want that to be my last memory of her.
Keeping instead the one I had of her smiling at me
in the hall
by the elevator.

My father, sisters and I
-- without his wife, without our mom --
went home.

Rain pouring from an unforgiving sky
reflecting our emotions
making travel slow.

Few words passed between us
as we made our way to a house
soon filled with sorrow.

Four-thirty in the morning,
the hospital called.
Her body finally breathed no more.

Heavy rain on any given day
refreshes that memory.

Taking me back
to that day so long ago
but somehow not.

I saw her last,
in the hall
on a gurney
before disappearing behind the elevator doors.

She smiled at me and said, “Ah hun”.
“I love you. This will make you feel better”,
was all I could say.

Then away from me,
she was taken away from me
forever.

My life was never the same.
With all the happiness I had experienced so far in life,
Never had I experienced until that day,
life’s most painful and permanent part.
There is an end.

Tears flowing less often,
pain still persisting,
longing still lingering.
Never had I lost someone I so deeply loved.

Too quickly her time
ended.

Time is my worry now.
Will I have enough?

Time.

Set the Peckers Free and Other Nonsense

Warning:  Graphic image below

Ah, autumn, it brings cool breezes, multi-colored leaves, and . . . breast cancer awareness messages.

So, it was no surprise when this appeared on my Facebook news feed recently. I decided I could not let it go without trying to educate at least the poster of this picture about why this promotion is upsetting to me.

The conversation went something like this:


Me: Most everyone is aware of breast cancer. October 13th is also Metastatic Breast Cancer Awareness Day. Metastatic Breast Cancer is incurable - deadly. This advertisement sexualizes a deadly disease and neglects the seriousness of it. Keep your bra on. Donate instead.

Female #1: If this day causes someone to donate a $1.00 then it is ok by me.

Female #2: Well, that day should be interesting.

Me: This advertisement does not make anyone aware that 30% of early breast cancer patients will become stage IV – the deadly stage. I lost my breasts 9 years ago, so I can tell you there is nothing fun or freeing about breast cancer. I am now stage IV. Every time I see this image it angers me because it sends the wrong message.

Poster: Oh, I am sorry. I did not mean to offend you in any way.

Me: In no way did I consider your posting of this message to be mean spirited. I only wanted to make people aware that there is another side to this.

Poster: I'm so glad you did, Lisa, You hit a mark that is so true, and I was missing it entirely. Thank you again, Lisa.  

Then this response appeared:
 
Male: OK...What if they would do one for Men's prostate cancer. Do we get to walk around with our pecker hanging out? Before anyone gets upset, if you don't joke about something or have fun it will kill you. I am epileptic and I am just glad when I have a seizure I don't wet my pants...lmbo Humor is the best medicine for anything.

Clearly, this person is in the dark about stage IV breast cancer with his words “if you don’t joke about something or have fun it will kill you”.  My lack of humor is not what is going to kill me.

After, rereading his comment I wondered,: am I missing the humor of this promotion?  Since I no longer have breasts -- just cold, round, fake, immovable illusions – for me the activity of releasing my breasts from whatever binds them wouldn’t feel or look quite the way I think the promoters were hoping. For those women living with an intact cancerous breast -- for stage IV patients at initial diagnosis the breast is not always removed -- I am confident having their breasts jiggling around for people to see would be the least appealing way for them to actively participate in an awareness campaign. Humor and cancer -- hummmm . . . nope, I still don’t see it.

I decided not to respond to the comment-er. His lack of sympathy and ability to comprehend what I wrote was apparent. Any attempt on my part to explain my opinion most likely would have been useless. The writer clearly does not have a body part that has set the course for his ultimate demise.

So I helped one person understand, but the other is still out there thinking: No Bra Day is just plain fun.


If I had responded it might have gone like this.

Me: I would much rather worry about peeing in my pants than worrying if my next scan will indicate I am close to death. Would you feel the same way about humor being your best medicine if you had, using your word, “pecker” cancer which is called penile cancer by the way, and although rare, does happen? I am betting you would have your penis amputated in hopes that your life would not end sooner than you ever imagined. Your relationship with your penis would be changed forever. I don’t believe you would want your penis dangling free in your most comfortable pair of  shorts while you enjoyed how freeing it felt.

Would pictures like the one below help him understand the seriousness of cancer? I don’t think any man or woman finds penile cancer sexy or fun and certainly not beautiful. That should be the same for breast cancer.

Penile Cancer:  http://freethoughtblogs.com/taslima/2012/06/06/did-you-ever-think-of-sexualizing-penile-cancer-dude/

When he asked, "Do we get to walk around with our pecker hanging out?" I wondered if there was a sexualized campaign using slang words and images of healthy-looking people for cancerous male sexual body parts. So I did a little internet investigating. What I found surprised me.

My penile and prostate cancer awareness campaign searches did not generate the same type of slang word usage as is found with breast cancer. Then again dick and cock are words used for undesirable guys, so the effect would not be the same. There were words about awareness and the typical ribbons with their designated colors -- nothing sexual at all.

However, testicular cancer did.

The first website I discovered was "feelmyballs" - The Testicular Cancer Awareness Project. http://www.feelmyballs.org/check_yourself.php

Another one at http://singlejingles.org/  for the Testicular Cancer Foundation had the slogan “Man Up - Check’em”. On that webpage is a round symbol with “Be Ballsy” across the middle. Is that cute and funny?  I bet someone living with testicular cancer doesn’t think so. Those words do nothing but trivialize the disease. It has the same effect as the slang vocabulary used in awareness advertising for breast cancer.

Facebook’s testicular cancer page has this . . .

https://www.facebook.com/tca.org 

And then there was this at www.theboys.org for Testicular Cancer Awareness.

Remember boys, get your bracelets and proudly wear these words “Don’t be a punk, check your junk”.

And finally, I almost FORGOT what I was looking for when I found this on Youtube about testicular cancer.

Cancer advertisements should educate and inform. It should not cause a person to think about sex.

Men are not solely to blame for these advertisements. Women are responsible too. Our society glamorizes woman who prance around willingly allowing their body parts to gain them attention, and for some it can be quite lucrative. Jennifer Lopez, Nicki Minaj, and Beyoncé are at the top in popularity because of their scantily dressed figures – oh yeah, they sing too. When gracing the Red-Carpet, America’s female actresses are spotlighted if they appear in gowns that are clearly meant to promote them as sexual objects. Side-breasts, cleavage, almost the entire breast except the nipple are revealed from every angle. Stars do not have to be half-naked to be appreciated, but as long as people continue to profit from promoting sexual body parts and people find this acceptable, this practice of using sex for disfiguring and life-threatening diseases will never end.

In the meantime, I and many others will continue to express our opinions about the inappropriateness of “Save the Tatas”, “No Bra Day” and "Love my Nuts". Perhaps someday enough voices will be heard and people will change their attitudes about sexualizing advertising in the guise of cancer awareness.

Setting body parts free helps no one.

Update/Treatment #23 and #24

Treatment #24

On August 18th (just over 3 weeks ago), I had my #23 treatment. Since I have been doing well and had such a fantastic recent scan, my doctor decided I could skip seeing her and go directly to infusion.

That is exactly what I did.

Soon after I was seated in the treatment center, a nurse accessed my port drawing from it enough blood to fill a few vials. Those were sent to the lab for analysis. Thirty minutes later, I had the results. My red blood cell and white blood cell counts were normal. My platelets were a little low, but acceptable. TDM-1 can be tough on platelets (those are necessary for the blood to clot). If my platelets were to become very low I would notice that I bruise easily, and my gums would bleed as I brushed my teeth. Let’s hope that never happens.

Treatment #25

On Monday, September 8th, I completed treatment #25. It was a very long affair beginning with a hematology appointment. After my port was accessed, blood drawn and sent for analysis, I walked to the department next door where I waited to see the doctor.

When the knock on the door of the exam room finally came, I wasn’t surprised that it wasn’t my doctor who entered. In the past, I always felt annoyed that a PA would enter when I was expecting my doctor. After all, my appointment was scheduled with the doctor, so shouldn’t I be seeing her? Then I would think "it must be good that I don’t need to see the doctor".  On the other hand, how do I build a relationship with my doctor if she sends someone else to see me? Today though, it didn’t bother me. This PA seems to genuinely care about me -- more so than my doctor seems too. I will gladly see her anytime.

I reported to the PA a new symptom that I have been having over the past three weeks. It began with a pain behind my left ear. It was short-lived and would come and go over a few days. Then the momentary pain would present above my ear.  A few days later, I began to feel a prickly sensation.  It would begin at the back of my head and end at my left temple. This sensation could be felt at different times throughout the day. I really noticed it when I went to bed and upon rising in the morning. Now, this sensation can be felt on the right side of my head as well though not as often and not as noticeable. Weirdly, at times, I feel as if I am wearing a hat when no hat is there.

Of course a cancer patient immediately thinks “oh no, tell me the cancer is NOT in my brain”.  I tried to suppress that thought by thinking about other causes. Maybe my scalp tingling is a result of my back or neck pain. That pain could be sending messages to my scalp in what is called referred pain. My back has been a source of mild on and off pain for years. Or could it be a strange neuropathy involving my head from the TDM-1 (Kadcyla)? I do have neuropathy in my fingers and toes from this drug leaving those nerves hyper-sensitive. As I type right now, little prickly electric-type sensations are present in each finger. Tingling of the head is not listed as a side-effect, though. In the past, I have had this tingling sensation on my scalp when my GI system was wacky. TDM-1 is gentler than Taxotere on the GI tract, but it still causes problems. Perhaps it is my sinuses. I do feel a pressure sensation between my left eye and nose. Have any of you, dear readers, had this type of sensation before?

After I described this new symptom to my P.A., she had no answer as to its possible cause. She told me that brain metastases do happen more often with my breast cancer type. Typically HER 2 positive disease of the brain presents as one mass rather than several. Most often, she continued, you would notice that your speech and balance are affected. Since I was not having those issues, she felt like we should give this more time and see if it resolves. In the meantime, she would let Dr. R. know. If I noticed a worsening then I should call so a brain scan could be ordered.

Brain scan . . . yikes! I had one at the beginning of this tumultuous life that I now lead. It was clean.

Finally to the infusion center I went where I endured more waiting while my drug was warmed and mixed in the pharmacy. At the end of all this waiting, I saw my chemo-nurse walking toward me with the clear bag of fluid that I am so grateful to receive. Thanks Roche/Genentech Pharmaceuticals!

Love Life

One of my favorite things to do is walk the Loop at Wrightsville Beach. There is usually a wonderful breeze that takes away some of the oppression of the summer's heat.
 

Walking alone allows me the opportunity to spend uninterrupted time thinking and sorting through the thoughts that fill my mind. I walk with no music in my ears--just me, lost in thought.

As I walked recently I realized the busyness of the week had made me unaware of the sadness that I keep hidden inside me. With each step I took that sadness seeped back into my thoughts. Soon it was pushing my other thoughts out of the way, and I found myself wanting to run so fast I would leave my diseased body behind. Perhaps some weird unexplainable event would allow me to run right into a new me.

Not too many weeks ago I remember feeling uncomfortable, almost angry at the phrase "love your body".  Today, I thought, "Honestly, why would I even consider loving my body? Especially now. It is literally trying to kill me."

 

As each foot moved me along I entertained the idea of leaving my body for another. I looked around at the people walking the same concrete path that I was. "What about that one?" I thought. "No. Maybe that one . . . ?" I wondered, if given the opportunity to take another body, would I?

As I traveled the 2 1/2 miles of path, I continued to think about the "love yourself, love your body" idea. It seems all of us are constantly reminded to love who you are. Embrace the nuances that make you YOU. I considered why our society finds this so important? So many people seem to have such fragile self-esteems. Perhaps that is how this all began. Or, is it used to promote healthy living hoping people will treat their body with kindness? Maybe it is some kind of good-will gesture to make us feel better when we do not meet some societal standard of beauty? Is it an excuse for those that cannot find the will-power to change something they don't like about themselves? Could "love yourself, love your body" really just be a societal mantra created for consumerism? I stopped when I thought of that one. Is this the reason behind this movement--consumerism?

There is nothing like material-goods to either make us feel like we love ourselves, or it is a validation for ourselves that we do. Advertisers have figured out that they can sell us just about anything from the food we eat to the bikinis some people shouldn't wear, to cosmetics, gym memberships, salon services, even vacations and of course the cars we drive all because of our obsession with our self. This obsession was created or at least nurtured for consumerism.

We are told not only must we love ourselves, but we must love ourselves FIRST before we can love others or before good things can start happening to us. I never understood the logic behind this way of thinking. It seems backwards to me. Loving yourself should be the end result of a very long process. A process that involves surrounding ourselves with people (friends, family, work relationships) who make us feel loved and appreciated. Those relationships are the key to how we feel about ourselves.

I have spent years becoming comfortable in my own skin. Comfortable does not mean I like everything about myself, because I don't. And it doesn't necessarily equate to self-love. Comfortable implies acceptance of self. This only comes after many years of living with . . . well, me. As life happens and people and experiences come and go, acceptance of self becomes part of the process of living.

The "love yourself, love your body" goal promotes material wealth, self-absorption and satisfies our need to get things quickly. Businesses just can't wait for people to become comfortable with themselves. They need you to love yourself today so they can sell their product to you -- today.

Then I thought . . .

Loving yourself is not the same thing as loving living. That is really what is important.

Instead of “love yourself, love your body” our society’s biggest promotion should be about respecting life. The feeding of the “love yourself, love your body” narcissistic agenda causes too many people to become greedy and willing to hurt or take a human life in order to get what they want. Our society’s values are misguided.

I think people would be happier if society moved away from the expectation that we must love ourselves. If we could focus on the importance of life itself instead of how important each of us ought to feel about ourselves, the world would be a better place. With that, I think we all would have a better appreciation for ourselves and other people in general.

I walked the Loop two more times this week. I emerged at the end of all those miles calmer and less sad. I will never be able to keep hidden at all times the sadness I have for what is happening to me no matter how busy I get. It will always be there waiting to find its way back into my thoughts. I will manage to put it back in its place.

The “love yourself, love your body” movement is of no use to me. I have decided, though, my body is like my home-- warm, comfortable, familiar. It took a long time to get to this point. I don't think I would want to go through that arduous process of learning to accept a new one. Besides, I love the life I have had in this body. I cherish my memories, and the people I have met along the way. It wouldn't be my life if I took another body. So, I think I'll keep it.

Then again, would there be a test drive option?