Review 2014

The picture on the left has been on my refrigerator for years. I am the frog.

On Monday of this week, I had my 11th treatment with TDM-1 (Kadcyla). My first appointment --accessing my port in preparation for treatment and gathering several vials of blood for testing-- was the only appointment that went according to schedule. I waited two hours to see a doctor and more than that waiting to be treated. Perhaps the delays were due to patients scheduling their treatments for that Monday since the hospital's treatment center was closed on Thursday (Thanksgiving) and Friday last week. Without me complaining about my extremely long wait-time, my chemotherapy nurse talked to her supervisor and, as an apology, gave me a parking voucher.

On December 22, 2014, I will receive my 29th infusion for the treatment of my disease. It will also be my 12th treatment with TDM-1.

Over the course of this year I have had:  17 infusions, 4 CAT scans of the neck, chest and abdomen, drank 8 bottles of Barium Sulfate for better viewing of  my abdomen during the CAT scan, 1 MRI for the brain, 8 needle pricks into the vein of my left arm (actually 9 because a nurse had to re-do one), 17 pricks to access my port, 4 MUGA scans to make sure my heart is functioning as it should, 72.5 hours of driving to the hospital and back (probably more due to stop-n-go I-40 traffic during the busiest hours), and hours and hours of waiting (so glad I can read).

IT WAS WORTH IT!

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?

It's Complicated - cancer that is.

Have you ever wondered why a cure for breast cancer once it has metastasized has not been found?

No, it is not the big pharmaceutical companies hiding cures from the public because it would affect their profits.

No, it is not some government conspiracy trying to keep population numbers down.

Actually . . .

It only takes a few minutes to read a scientific article about the signaling pathways inside a cancer cell to understand the reason there is no cure yet is . . . it's complicated—very, VERY complicated.

Take a look at the diagram below showing many of the signaling pathways within a cell.

On the outside of the cell are growth factors. These growth factor receptors sometimes are the beginning of a cancerous pathway. Inside the cell you will see PI3K and Akt. One fourth of breast cancers have a defect in the PI3K pathway. This pathway along with others begins with a gene that makes a protein. This protein activates a molecule. Other molecules are soon activated along a set course that when completed carries out a particular cellular function. PI3K is an enzyme (a special kind of protein) involved in the activation of the protein Akt. The Akt then activates mTOR which causes the cell to grow and proliferate. If mTOR mutates or its activation is controlled by other mechanisms within the cell. Then uncontrolled growth can occur. MTOR is very active in many types of cancers.

In normal cells there are PTENs that repair any mutations or damage to a cell that occurs. If the damage cannot be repaired, the cell experiences apoptosis-- cell death. Sometimes the PTENs are missing which of course is bad because damage to the cell cannot be repaired, nor does the cell die as it should. The cell is then able to make duplicates of itself with the defect and, you guessed it, a monster is on the loose.

I read recently that once a cancerous pathway is established, it travels in a continuous loop. There is no end to the pathway and the cellular function that is created unless something intercepts it. In normal cells, pathways have a halting mechanism to stop those cellular functions when no longer needed. But, in cancer cells, mutations in pathways can cause specific cellular functions to occur non-stop creating a very out of control machine that will replicate itself over and over pushing all the normal cells out of the way in a battle for space.

Amazing and terrifying, isn’t it?  

Below are two wonderful illustrations of pathways within a cell. After finding these pictures on the internet, I decided I had to share them, and the result is this post.

http://www.biooncology.com/therapeutic-targets/mtor              

http://www.biooncology.com/biological-pathways 


If you look at the above picture you will see the HER 2 receptor on the outside of the cell. In my case, these receptors have become more numerous than normal. HER 2 neu over-expression can occur in the cells of other types of cancers as well.

When a ligand (a molecule, a hormone, drug or antibody) attaches to a receptor, it begins the signaling necessary for the pathway to be activated. My treatment involves Herceptin with a chemo drug attached--DM1. Herceptin attaches to a HER 2 receptor taking the place of a natural ligand. Once it attaches, the chemo drug is released directly to the cancer. TDM1 inhibits cell signaling through the PI3K/AKT pathway and promotes apoptosis (cell death). Super cool, right?

Because of cancer’s complexity, no two people have exactly the same cancer. There are differences in the genes that have mutated and differences in the pathways that a cancer uses for survival, growth and proliferation. That is why one type of cancer does not respond the same way a seemingly similar cancer does to a particular drug.

To complicated matters further, within one tumor there can be cells that have different mutations than their neighbor. Read this Medical News Today.

Yup, it’s complicated.

Cancer is also very good at surviving. When a pathway is interrupted by a drug, cancer cells find new branches in their pathways in order to continue their survival. It is believed that the cancer cells can even make their surrounding environment conducive to their survival and spread.

Today, a lot of cancer treatment is a guessing game.  A person is given a drug based on their cancer type and the results of clinical trials. Many drugs are given with little knowledge as to whether it will work or not. Currently, many of the chemotherapy drugs are not targeted to a specific protein. Instead, the drugs target fast dividing cells – healthy and cancerous. Since healthy cells are affected some very nasty side-effects can occur. Very often these drugs only affect a cell in a particular phase in its life. Those phases are growth, copying of the genes in the creation of a new cell (replication), and division. Depending on the phase a cell is in upon the arrival of a drug determines how effective it will be. Some cells may be in a resting phase and are not affected by many drugs. There are some drugs that can affect all phases, thankfully. Many times, several chemotherapy drugs are given together to try to affect more cells going through the different phases at any given moment.  

In the future, as more targeted therapies are developed, treatment should become more personalized. It will be wonderful when scientists can take a person’s cancer cells and determine which proteins in a particular pathway need to be targeted. Then a drug can be selected/developed and delivered to a particular receptor and halt one of the proteins in the pathway. Being able to target only the cancer cell and knowing which pathways to intercept will stop so much of the suffering associated with giving drugs that affect healthy cells too. Targeted therapies – like the one I am being treated with -- will allow people to have a better quality of life, and hopefully live longer.

The complicated cellular machine that makes up all of us is slowly being unraveled. My very brief and simplistic attempt at explaining why cancer is so difficult to cure I hope has left you with the realization that the cure for breast cancer will not happen in the near future. Just Google “Breast Cancer Pathways” and the enormity of what scientists are trying to uncover will be revealed.

I am not a cellular biologist, just a person who finds biology fascinating, so if any of my information is incorrect, please let me know by commenting below.

For more information on types of targeted therapies, see Understanding Targeted Therapies: An Overview at http://www.cancer.gov/cancertopics/understandingcancer/targetedtherapies

Dancing with NED

Take a look at this. Find the word IMPRESSION. Then read the words underneath.

It says "No Evidence of Metastatic Disease"! Can you believe it? I really was afraid I would never see those words. What a wonderful surprise.

The description of a vallecula cyst is not related to cancer, so nothing to worry about there.

This is the best report I have had since becoming stage IV. For now, I am (as described in Cancerland) Dancing with Ned.

The reality is there may still be some nodules hidden from view of this CAT scan. The good news is those nodules that had been previously detected have reduced in size to 2mm or smaller. Next time, they may reveal themselves. It would be so wonderful for those nodules to stay hidden or in fact be gone for good. That is obviously what I am hoping will happen. NED doesn't mean I will live longer than someone who has stable disease, though. Survival is directly related to how a person's cancer responds to treatment. 

Nevertheless, I like the way this sounds. TDM-1 has made me very happy indeed.

Scan Results

This morning I woke up early. I should have gone back to sleep but could not. Today was the day I was to receive a phone call that would deliver good news or bad news. The anxiety I felt was quite intense. I didn't realize how intense until I actually heard the radiologist's report of the scan I had on Thursday morning.

I spent quite a bit of my time recently trying to prepare myself for the good or the bad that I was going to hear whether I wanted to or not. The good would mean another 3 months of feeling so much like my old self. I tried to convince myself that it was going to be good news. Why wouldn't it be. I have been feeling so good. Even the breathing issues I had been experiencing which I thought were allergy related now seem to have been resolved. Perhaps it wasn't allergies after all. The bad news of course would mean I would be inching closer to the end. That possibility terrified me. Nevertheless I mentally calmed myself with the hope that the next treatment may work, and that all is not over yet.

I also tried to convince myself that the worst news had already been delivered to me in April of 2013. Today, though, I decided that is not exactly true. In April I still had a chance to prolong my life. When the available drugs have all been tried, your chance is over. With every drug failure, it means I am closer to the end of the list -- simply terrifying.

Just after 11:00 am my phone rang. I answered and took a deep breath. The words I heard sent my heart racing and my body shaking. The nurse said, "The news is GREAT!" That is all I needed to hear. On Monday I will get the rest of the report. Today I am so incredibly happy. I get to spend another 3 months loving my life. Wahoo!

The 30% Club

I have been a member of a metastatic breast cancer forum for several months now called Inspire. One day, not too long ago, a member had an idea to design and produce a t-shirt. That idea has come to life. I liked it, so I thought I would share. The design is on the right and comes on either a white or black shirt.

This t-shirt is to let people know that 30% of early-stage breast cancer patients eventually become stage IV. That means the cancer has spread to a distant site usually the bones, liver, lungs or brain. It is still breast cancer. The fact that three (3) out of ten (10) people eventually become stage IV even though it was first supposedly caught early is alarming. It shows that so much more research needs to be done.

Only 2% of research dollars are spent on metastatic breast cancer. That figure doesn't bother me as much as it does others, though I agree it does make us thirty-percenters feel like people believe we are just gonna die anyway so who cares. I believe any research done, whether on early-stagers or late-stagers, can be research that potentially will impact all patients.

But, I also understand there are differences in breast cancer where some a more likely to spread than others. This is one area where studying metastatic disease with only 2% of research dollars is disturbing. Plus, metastatic breast cancer kills. Early-stage breast cancer does not. That alone is reason to put more resources toward researching late-stage cancers.

I never encountered the 30% statistic until I became stage IV. I only heard about my possibly being cured in terms of time spent without a recurrence. I read and was told the first time I was diagnosed that if I made it 5 years without a recurrence I would most likely stay cancer free. I made it 4 1/2 years. At that time I was told that if I made it 3 years without a recurrence I would probably be fine. My time before a scan detected the distant recurrence was 2 1/2 years. The truth is no one is cured until they die very old of something else.Thirty percent means a lot of people are not making it to old age.

If you think you might like one of these t-shirts please visit the website below. Make sure they know you want the Inspire MBC (metastatic breast cancer) design.

Shirts come in Gildan and Hanes styles. Gildan is for the woman that likes a tighter fitting shirt.

Artwork is at Tiny Little Monster and they are ready to take orders. Tiny Little Monster is a small, woman-owned business. They are only opened during regular weekly business hours.

The colors are lavender, gray with a little pink and green.

Here is a link to the order forms. There is free shipping inside the US.

https://www.shoplocket.com/products/ZLP3a-mbc-white-t-shirt-or-tank

Nice job SuperSherrie and others from Inspire.

Now you are aware that 30% of early-stage breast cancers become metastatic. 

It's not as easily cured as a lot of people may think.

  

                                    

Never Mind Doc

Everything about my infusion last Monday, July 7th, went smoothly.  I saw the PA, and we discussed my two concerns. One, my acid reflux is back full force. It really can make my days miserable. She said I could up the dose of the current over-the-counter remedy that I have been taking. The statistics show that 9% of patients on TDM1 experience reflux. Since I have had this in the past, I can't say for sure my treatment is causing this, but I did not have this problem with the other treatment. On the 25th, I have an appointment with a gastroenterologist. Hopefully, he will be able to prescribe something to help relieve it. Second, I had her check two little red spots on my neck and one on my chest. Those spots were worrying me because, believe it or not, breast cancer can metastasize to the skin. The more I read the more I find this disease has no boundaries. The verdict for the red spots was not cancer, whew! What they are is still unclear. For now I am not going to worry about them.

On Thursday, I met a new oncologist. This doctor was to be a new member of my team, one that would be able to order the drugs necessary for my treatments in Wilmington. While speaking with him, I asked how often he does brain scans. His answer made me remember my understanding that insurance companies, not the doctor, make the decisions about what tests I can have and what drugs I can take. Most tests are only allowed when there are symptoms -- unless it is an approved age-related screening like a colonoscopy or a mammogram. Once you have been diagnosed with cancer it seems to me screenings for metastases should be mandatory, but they are not. That may be because of the desire to limit radiation exposure, or perhaps there just isn't enough money available from the insurance company to pay for additional diagnostics. Since my disease, the HER 2 neu kind, tends to metastasize to the brain more often than other types, it seems only logical to have brain scans at least yearly whether or not there are symptoms. Treating a small tumor usually has a more favorable outcome for length of survival than does treating a large or numerous tumors. But, no, finding cancer when it is small is not the goal, so no brain scan for me right now. Sure, I could make up some symptoms, but I don't want to do that.

After three hours of mostly waiting for my blood tests, CT scan, MUGA scan, and next infusion to be scheduled, I finally felt that I had accomplished the goal of changing treatments to a facility closer to home.

On Friday that all changed. The nurse from the new oncologist's office called and said, "Your insurance is terminating on August 1st. If your insurance is to continue under the same plan or if you change insurance companies, we will need your deductible paid in full prior to any treatments." Our insurance is being renewed -- thankfully -- but and it is a big BUT, our deductible is $10,000! Nope, that amount of money doesn't exist in any of my bank accounts right now. The hospital in Chapel Hill has never asked for a lump sum payment of our deductible. Instead, they set-up a payment plan which is allowing us to manage the huge amount of debt we incur each year I live. The final words the woman said to me before ending our phone call haunts me still. I said to her, "I guess I will have to continue treatments in Chapel Hill." She said, ". . . if they will take you back." Good grief, I am at the mercy of so many people.

Today is Tuesday, one week and one day after my infusion. I spoke with the nurse navigator in Chapel Hill yesterday, and my treatments can continue as usual. It is disappointing after the many weeks it has taken to try to be treated closer to home to have it all fall apart because of our inability to pay for the switch. At least, the up-side is my daughter will be attending UNC-Chapel Hill in the fall which means I will be able to see her every time I have an appointment. I am happy about that.

Next appointment, scans will be reviewed. NERVOUS

New Oncologist-eventually

TDM1 is a wonderful drug in terms of side-effects. I feel great!

Monday, I sat down for infusion #20. Before any nurse approached me, I heard voices several stations away. The voices were singing in unison a song that I have heard once before while there; a song that will never be sung to me.

I find this practice of singing about someone's last day of chemo with "Don't ya come back, no more, no more, no more, no more" somehow disrespectful to the many patients like myself that will never get this fun farewell. The tradition is of course nice for the patient free now to live their life without chemo, but is it really the best idea in a room full of people where some are terminally ill? It just seems . . . thoughtless. 

In 2010, the place where I received my chemo for my stage 1 diagnosis didn't sing. I received hugs from the nurses and was on my way. The place where I received radiation therapy did end my treatment by giving me a balloon. Not so bad when radiation is something that cannot go on indefinitely no matter what your prognosis. When I arrived home, I promptly let it go gently into the blue sky above hoping that I was through with treatments forever. 

But . . .  there I was on Monday receiving an infusion. 

My nurse has let me down again -- or perhaps it was my doctor-- really it was both of them. Six weeks ago I requested to have some of my treatments in Wilmington. My nurse was supposed to contact a new doctor for me, one that we had discussed, and have my records transferred. After not hearing from her for one week, I telephoned her. She replied that she had contacted a doctor, and she was surprised to hear they had not called me. Another week passed. I decided it was time for me to contact the potential new doctor. I called and to my utter disbelief I was told that since I was established with another doctor in their practice, Dr. A., I could not change doctors. Does that not scream a lack of taking care of a patient or what! I brought this to the attention of my doctor at my appointment 3 weeks ago. She assured me that I would hear from someone from her office about a new oncologist in the next two weeks. I waited. Nothing. One morning I awoke thinking about this. I became a bit perturbed by the whole thing and decided to send my oncologist an email. She responded almost immediately, apologizing in her response. That very day, the nurse called with two doctors for me to consider outside of the practice of my former oncologist. She too apologized.  I wish she would quit apologizing and do her job. She admitted she should have followed-up. This is the same person who decided she couldn't call me about my last scan because she "chickened-out" because the news was not good.

I did not see my oncologist as I thought would happen at my appointment on Monday. One of the PA's took her place. She was warm, friendly, and absolutely seemed to care about me -- a nice change. We discussed the next steps. I am to contact one of the two doctors recommended and if it is a seemingly good fit then I can request that the new doctor have my records sent to them. From that point I can receive all my treatments there. Whenever needed, I can return to Chapel Hill. My plan is to only go to Chapel Hill if I need to make a new decision about a change in treatment. Wow, this could have been so much simpler.

Then on Tuesday I received an unexpected call from my nurse. She wanted to call the doctor I had chosen and schedule an appointment for me. Sure seems to be a lack of communication between the people involved in my care since I understood that I was to call. Nevertheless I was grateful and hopefully she will call me by this week's end with a time and date to meet my new oncologist.

I also get frustrated with my having to remind my doctor that it is time for me to have a MUGA scan or some other important test I need. I am after all paying them to manage my care. Or, maybe I am only paying doctors for sharing their knowledge instead of them trying to not harm me during treatment. At this appointment I asked about my liver function. It seems my liver function had not been checked through a blood test the last time I received treatment. When blood was taken the morning of my treatment, no liver function blood work was requested either. The PA ordered this test and commented this was a necessary test for me because the drug I am on can affect the liver. Again I ask . . . why am I making sure my treatments don't kill me? Shouldn't that be what I am paying them to do. Frustrating . . . 

Number 20 is done. Now it is time to get ready for my sister's visit from Kentucky. I have been preparing for her and her family to come for a few weeks now. A little more cleaning and some grocery shopping to complete then all my work will be done. It will then be time for some reminiscing and relaxation.

Good Attitude, Stay Positive?

Keep a good attitude and stay positive - those words are probably heard by every cancer patient throughout this country.  I hear it. I read it on blogs and on forums. Those words are not merely words of hopefulness, though. They are words that promise a power beyond our simple thoughts. 

I am guilty of being influenced by the possibility of my mind’s power. I have chanted the mantra "kill the cancer, kill the cancer" in hopes of giving power to the drugs entering my body. My rational mind knew it really wouldn’t work, but I did it anyway. 

Perhaps the idea of the healing power of the mind began when people first believed they could communicate with their god(s) by sending their thoughts through prayer. Then somewhere along the way people bypassed the deity and went straight to using mind-over-matter thoughts sent directly to whatever the person desired to change. Sometimes it seemed to work so the possibility indeed seemed possible. To present day, this belief still persists despite any scientific evidence of proof. 

Stories of people living longer with claims their positive thoughts played a part likely lead many people to believe being positive is synonymous with living longer. But, curmudgeons with life-threatening diseases can and do live as long as positive people with the same disease. It is quite evident to me that in our think-positive-thoughts only society, no one wants to hear the stories with any type of negativity. Therefore, why wouldn't people believe that positive thoughts could actually give us the ability to produce physical changes within our body if the good-outcome tales were the only ones people heard or wanted to hear. Think thoughts of eradicating cancer, and we can heal ourselves. It gives us so much control over our individual circumstances.

Unfortunately for all of us, cancer does not have a brain. It doesn't care how strongly we desire to live. Plus, we can't command our white blood cells to attack something it can't detect. Even if we could, cancer cells are our own cells, not a foreign invader, so the immune system wouldn't know what we were telling it to attack. Instead of actually healing us, I believe the stay positive philosophy simply makes everyone involved feel better. That alone is one reason this myth continues since no one I know wants to be around someone who is sad, angry and miserable. 

I think it is a shame that our society deems it not ok to be sad. I know what it is like to see the end of my life and to face having to leave everything and everyone I love sooner than I had imagined. I have been angry, depressed and sad beyond consolation. It was necessary for me to go through all those emotions. If I had stifled them I may not have come to the happier me of today. Besides, what is wrong with some good mad as hell negativity anyway? Yeah, it makes people uncomfortable.  Cancer is uncomfortable. If more people were freer to express their emotional distress, perhaps there would be less people on anxiety medications. I did take Ativan in the beginning of my diagnosis because I was told to do so by my oncologist. I did stop crying, but it made me numb emotionally. Actually, I really didn't feel much of anything including pain when I fell in the middle of the night. Had I kept taking it, I don't believe I would have come to terms with reality.

Obviously, if our mind is able to control our insides, it can control our external circumstances as well.  Engage the mind to visualize what we desire, and we can have great wealth, a great job, and great friends. This idea is so powerful. Simply go into a bookstore and you can see how taken people are with this potential. There are numerous self-help books to guide people to tap into their minds and get what they want- all at a price of course. That $20,000 a year job could become a $100,000 a year job just by thinking it. Are you having trouble finding someone to spend your life with? - change your attitude. And, that incurable disease you have, simply visualize the cancer disappearing and it will. Or, maybe if you thought about it the right way you could win the lottery. Anything is possible with our minds. If it doesn’t work . . . well, you must not have thought the right thoughts, and you should try again.

I believe positive thinking can allow for hopeful thoughts to enter the mind, but it cannot make cancer go away nor can it change life circumstances. Action is necessary for those kinds of changes. The mind just does not have that kind of power. If it did, my life would be a lot different because I sure have wished hard enough to be free of this horrendous disease. Certainly there are millions of people like me that have wished for the same freedom for themselves and their loved ones. But, they still died sooner than they would have without the disease. 

I am not opposed to hopeful thoughts or even cheerfulness. Laughter does indeed initiate smiling causing the release of feel-good hormones that just - well . . . makes us feel good. This could be the reason why we have the saying "laughter is the best medicine". What I am opposed to is someone trying to convince another person that they can beat their cancer by having a good attitude and staying positive. Or, a person telling someone that good things don't happen to them because they didn't think the right thoughts. As long as no one can prove or disprove the mind has such an ability, this kind of thinking will continue. None of us, no matter how hard we wish it to be true, is capable of performing that kind of magic.

Treatment 19, #2 TDM1

Treatment May 28th-Wednesday

Changing my treatment to a facility closer to home has turned out to be more difficult than I expected. My nurse navigator claims she called to arrange my care with a new oncologist, but they never called her back. Because of her lack of urgency, I decided to call the potential oncologist's office to see if I could get things moving along.  This was not to happen as easily as one might assume. The person who took my call stated that since I had already been established with a doctor within their practice, in my case I had been seeing Dr. A. before he sent me to Chapel Hill, the patient CANNOT switch to another doctor. Have any of you ever heard of such disturbing customer service? I really did not want to go back to Dr. A., so I took this battle back to Dr. R. in Chapel Hill in hopes that somehow she could handle the situation. Well, she handed it back to my nurse navigator. It was last Wednesday that I had treatment. Today is Tuesday. I will wait patiently till the end of this week before I start making some noise. 

My treatment went well. I had a few large bubbles in the tubing carrying the fluid to my port that made me anxious. The nurse treating me was eventually able to get that under control. 

If this drug works, I will be so incredibly excited. I feel great! The chemotherapy is delivered directly to the cancer by hitching a ride on the drug Herceptin. It is supposed to be pretty powerful. I feel far better than I did a year ago. Honestly, if I wasn't suffering from acid reflux right now--possibly unrelated to treatment, still could be though--I would not know I was being treated with chemotherapy.  I do have some neuropathy in my finger tips, but I must be getting quite used to it because I wasn't thinking about it until just this moment.

My children are keeping me busy now that the three oldest are home from school.  Two of them are transferring from one college to another for the 2014-2015 school year. This takes a lot of work. One thing I have learned about colleges is don't hesitate in letting your child apply to a big university. Just because a school is cheaper in price doesn't mean your financial obligation will be less than a more expensive school. For us, the bigger schools have offered university grants that far exceed anything offered by the smaller colleges. 

My husband and I celebrated 21 years of marriage on the 28th. And, maybe you noticed my treatment occurred on this day. Not really a great way to be celebrating, but in a strange way it was the best way since the goal is to keep me around for future anniversaries. How fortunate I am to have someone who is willing to help me hold onto life. I feel very thankful.

Beginning TDM1 (Kadcyla)

TDM1-Kadcyla

My cancer has progressed.  The progression actually was noted in the last scan from January, but no one was alarmed by it --nor did they tell me -- because it was only one lung nodule that had enlarged and that was only very slightly. This last scan showed that same nodule had increased 3 mm -- still slight, but definitely an increase. Also noted on this last scan were some shadows called groundglass opacities indicative of new nodules in the bottom lobe of that same lung. Although the progression is considered small, it is significant enough to warrant changing treatments.  The new drug I am beginning today is TDM-1. It is a chemotherapy drug attached to a targeted therapy. The side-effects are minimal--unless I am one of those unusual cases. Severe side-effects could include bleeding gums, nose bleeds, and bruising from low blood platelets. I will take this drug through my IV port every 3 weeks.  Twelve (12 ) weeks from now I will have another scan. It sure would be nice to have a good report.  Good reports are happy days indeed.

Am I scared that this drug might not work? Absolutely. Everything with cancer is scary. Living is scary. Cancer is scarier because I know what is going to kill me,  and it will kill me sooner than I would like. Ok, people, I know I could die from a car accident instead. Chances are the cancer will get me first.

I am adding another oncologist to my team. Finally, I am taking the necessary steps to get treatment in Wilmington. My three oldest children who are in college will be home for the summer. My not missing full days away from home because of treatment will allow me to handle all their different schedules more easily.

So, the me of today is sad, but I am climbing back out of the fog. 

Possible Progression

Possible Progression

I knew this day would come. 

There was a difference in the way my oncologist entered the room.  Her face told me the news. She walked over to the sink and began washing her hands as she always does. This time, though, she didn’t immediately jump into I know you are anxious to hear. Your scans look good.  Today, as the water washed over her hands, she turned to look at me and asked how I was.  I responded, “It seems I am not doing that well.”  She said, “Well . . . there is what appears to be a slight progression.”  She dried her hands and sat down and began to review what was reported about my CAT scan.

I had tried to prepare myself for this moment.  For days I have been going over the scenario of how I would react if told the cancer had progressed.  I remember thinking there is nothing I can do about it.  I will not die today and not even tomorrow.  Along with possible bad news, I also kept hoping that I would once again have the good news of stable disease.  Then I could relax and enjoy life for another three months.

The report stated that there were numerous nodules in the upper lobe of my right lung and in fact those appeared to have increased in number. This is completely different than the last several CT reports.  Matter-of-fact, my last few scan reports have not mentioned the lung nodules at all.  Since there had been none reported, I believed that none were visible.  My oncologist had not reviewed the scans herself, so she could not comment. Since the nodules were now noted, this seemed to me to be a definite indication of progression. But, my oncologist wanted a radiologist from her department to review the scan and give his report before a new treatment was started.  One report of slight progression from one radiologist may not be the conclusion from another radiologist, apparently. 

    

The other concern was a fluid-filled mass in my throat that my oncologist wanted examined by an Ear, Nose, and Throat Specialist.  I would need to have this 1 cm mass investigated before I received my next treatment.  My oncologist did not believe that the mass was cancerous, but it was possible.   More crap to deal with – what fun!

Soon we were discussing the next treatment option.  This would be a drug called ado-trastuzumab emtansine (Kadcyla), previously referred to as T-DM1.  This drug was FDA approved in March of 2013, so it is a very new drug for people like me.  It is a chemotherapy agent, but it is attached to a targeted therapy (trastuzumab called Herceptin) so it targets the cancer cells.  Most Her 2 neu targeted cancer drug treatments include Herceptin. The cost is estimated to be around $9,800 per month and is given through IV infusion.

If I am given this new drug, I will have thoughts of worry for the next three months until the next scan.  The new drug may not work.  Maybe it will.  And so there go my thoughts, bouncing back and forth from bad to good, and good to bad.

I almost lost control of my emotions as we talked about changing treatment.  When I thought about possibly losing my hair again, I could feel my body begin to shake.  My hair, to have it, makes me feel more like the old me.  Losing it is quite devastating and ridiculous at the same time.  It is just hair, but it gives the illusion that I am just as healthy as I was before April 1, 2013.  Fortunately, the side-effects of T-DM1 don’t include hair loss.  

After my initial shock, I regained my composure and looked down at my notes.  I was curious if my moving on to a new drug would disqualify me for any existing clinical trials.  Trials sometimes don’t take people if they have been given certain drugs.  Dr. R. said that there were no trials on-going that would offer any drugs any better than this new option. 

Genomic Profile

Also, I inquired about having a genomic profile done of my cancer in case certain characteristics of my cancer could be matched to particular drugs.  My oncologist said yes this could be done.  At UNC there is research program called UNCSEQ .  A sample of a person’s blood and a sample of a person’s cancer cells are taken.  My previously taken cancer cells are in storage so no need to go through another biopsy. Then DNA sequencing is done of the cells from both samples.  Those are then compared looking for differences and similarities in the genetic codes. There would be no cost to me.  The results would be reported to my oncologist including any particular results showing a genetic component that could affect my children.  The entrance into the research program was simple.  I signed some papers and blood was taken from me. I was told that results could take as long as 3 to 6 months.  At least something productive did come from today.

Receptor Status Change

The last of my questions asked of Dr. R. was about testing my tumor to see if there had been any changes in the receptor status of my cancer.  Currently, I am Her 2 neu receptor positive.  There are an abnormal amount of receptors on the outside of my cancer cells.  Because of this, the cell gets its signal to divide and grow from these receptors.  This over-abundance has caused these cells to act abnormally.  Other receptor positive cancers involve the hormones estrogen and progesterone.  Their mutation causes them to behave abnormally when these hormones are present.  There can be any combination, positive or negative, of these three receptors. I discovered something from her explanation of my not needing this testing now that I had not known.  All breast cancers change in various ways overtime – I knew that. That is why treatments must change.  I learned that breast cancers that are positive for a particular receptor can lose these receptors and receive their growth and dividing signals through another pathway.  They can lose these receptors, but the interesting part is once they are negative for a receptor they cannot become positive.  Since I am negative for the estrogen and progesterone receptors, I will never be positive and never have the option of being treated with the drugs used against it.  After thinking about it, I realized this new knowledge has brought me a new layer of fear.  Dr. R. said that if she noticed my cancer becoming highly active, she might suggest testing for the receptor status. If there was a change, my cancer would be TNBC or Triple Negative Breast Cancer.  That has fewer options for treatment. Yup, a new layer of fear added to the mountain of layers already within me.        

My Nurse

Interesting incident occurred as the nurse was trying to organize my appointment with the ENT and to plan for my treatment the following Monday.  Before she spoke to my husband and me, she closed the door of the room then proceeded to tell me she had known on Friday the results of my scan.  (I had requested at my last appointment that as soon as the results were known that she call me.)  She apologized to me, and said she had “chickened-out”.  She did not want to give me the bad news.  I really wasn’t sure how to take this nor do I still. While I do appreciate her thinking enough of me to not want to tell me unpleasant news, I feel that she neglected to do this part of her job.  It really isn’t a question of whether she wants to give the news or not.  If she had not told me, I never would have known.  For that, I appreciate her honesty.  If not for her guilty conscience, I would have continued to believe that the results had not been received until today.  In the future, I will just wait until my appointment to receive news.  It won’t change anything anyway.  

My Rant

I need to rant for a moment . . . I should have been called by phone by someone.  At the very least to readjust my appointment until all the facts were available.  If my treatment was to be changed, I wouldn’t have received treatment on this day anyway.  The insurance company has to approve the new treatment.  Seems it would be more efficient to call me, let me know that the results of the CT scan needed a second opinion, and call me back to schedule a new date for treatment.  Instead, I drove those 2 ½ hours, had my port accessed, only to find out that I have to return a week later.  Time is important no matter who you are, but when you know for sure that you only have a short amount of time left as a breathing/thinking human being, the more important time becomes.  Yeah, I know, my visit allowed people to be paid today allowing them to feed their families. I just hate to think that money is more important than implementing the best and most efficient method of handling a patient’s time.   

The Unexplained Mass

Tuesday, I went to the Ear, Nose, and Throat Specialist.  He examined my scans for the questionable area and read the part of the report that described the fluid-filled mass.  A long tube was placed down the left side of my nose so he could view the mass.  It was located at the base of my tongue within the curve that becomes the epiglottis.  After viewing the area with the scope, he put a glove on his hand and put two fingers down my throat and pressed on the area.  The procedure wasn’t so bad.  He had numbed my sinus passageway.  Amazingly, I did not gag as much as I thought I should have.  In the end, he called the mass a Vallecular benign cyst.  Whew, I can push that worry to the side.

The Second Opinion

This Thursday, the radiologist in Chapel Hill will review my CT scan comparing it to the scan from January.  Then, probably, Friday, I should get a call (or maybe not) to let me know if in fact there has been progression.  It would be nice to hear that there is not enough evidence to say for sure it is progression and that I can remain on my current treatment. I feel really good physically right now and I really hate to see that change.  Plus, I was so hopeful that Perjeta and Herceptin would keep me stable for a long time.  It has been 12 weeks without the Taxotere.  If there is progression, it makes me think the Taxotere was doing all the work to keep the cancer stable.  My doctor said there was no way to prove this.  I think trying Taxotere would prove it, but no! I do not want to do that. Still, I have to wonder if I had not asked to try just the targeted therapies, would I possibly be changing drugs this Monday.  At least my chest tumor pressing on my vocal nerve is still stable.

So, I may be moving on to a new treatment.  Not the kind of news I wanted to hear. 

My next appointment is Monday, May 5^th.  I will post about it next week.

Lisa