Just Happy

The days leading up to the contrast I drink and the circular machine my body is sent through leave me with anxieties that would cause my body to explode if that were possible. I hate it. But it must be done. I want to know.

Scan day on Monday came with a treacherous drive to Chapel Hill. Two cars were flipped outside of Raleigh, and several more were sitting on the side of the interstate after hitting an icy spot in just the right way. The journey was slow. I called to make sure the hospital was taking patients. They were. I was told not to worry if I was late.

The travel to the hospital was worrisome. Worrisome because of the freezing rain, but also because this scan seemed different to me than others. Of course I am always scared, but this one came with such high hopes. A radiologist in September believed radiation could get the 13 mm nodule in my right lung under control allowing me to stay on my current treatment, TDM-1. It makes me feel far less sick than my previous ones, so losing it is a big deal. Others that follow will physically alter my quality of life in a bad way.

Cyber-Knife radiation ended in mid-November. During that time I did not receive any other treatment so my cancer cells were free to do what they will with no TDM-1 to smack them back. Soon I would know how my tiny tumor responded to the radiation and how any other mutated cells settled in my tissues were behaving.

Walking down that long hall to the place that would reveal good news or bad, I felt that sensation again. The one that makes me think: is this how it feels to walk to a place of execution? That is extreme I know, but my mind goes there. 

At 2:00 pm, Greg and I were sitting waiting for my Physician’s Assistant to give us the news.

Will her words leave me shaking violently as I continue walking on this tight rope of life? Staying balanced is hard.

The quiet knock on the door came. Bracing myself with a deep breath, I looked in that direction.

The door opens and the tiny person I am so familiar with these days appears. She has a smile on her face. Not just a smile but a big, genuine, every muscle used kind of smile. Her smile was directed at me.

I waited before saying anything hoping what I was seeing was not my mind playing tricks on me.

“It is good news!” she said.

“Yes!” I screamed, arms raising above my head, hands soon cradling my face incredulously.

How could it be possible that I was getting such good news?

For a few minutes the three of us celebrated. We looked at the scanned pictures. My lungs were clear. My body was clear. 

Then she says, “This is a preliminary read from the radiologist.”

My endorphin levels began to drop.

"There is a 1-2mm hypodensity in your liver. I don’t want you to worry about it. It is something we will take a look at in three months”.

Not worry?  

Uh, sure, okay . . . I don’t think that is going to happen.

That is one of the hard parts of cancer. There is always something to worry about. Whether it is white blood cell counts, platelet counts, the liver or the kidneys failing, or crappy little hypodensities that may not be cancer, but are scary nevertheless.

With this news from the best scan I have had in almost three years showing the fantastic result of Cyber-Knife radiation and what it can do to cancer, it might be expected that I would walk out of that hospital with no other thought than this is one of my best days ever! Of course, it is a great day. But, great days never seem to have that feeling of long-term elation that I imagine. It might be similar to how an Olympic gold medalist or of someone who wins the Super Bowl possibly feels. The person works so hard to accomplish a goal, but once they get there it is not as they expected. The reason? There are other feelings accompanying great events. Happiness of course, but fear, sadness, more pressure to perform, and guilt are all part of that package.

For me, such news doesn’t block out those emotions. Fear is never gone. Like the fear of a crappy little 1-2mm hypodensity—that may be nothing at all, but still. Guilt remains present because so many people have not had scans like mine. Then there is this one: the gut-twisting confusing feeling that comes after advancing to the next round of this game of Russian roulette. This game is tiring. Good results simply mean that in three months I have to play the game again. The tremendous anxiety, the fear of a bad result must be played-out all over again. Can’t it all just go away?

Emotions that negate happiness are made real especially when your PA says to you, “We know cancer is there. We just can’t see it.”

All my hopes of being cured—if that were somehow possible, but I keep hoping—were washed away by those words.

So, while people might think such wonderful news as this should leave me with a permanent smile on my face, my brain can’t let go of the other emotions--the guilt, the sadness, the fear--that wrap around me as I go from one scan to the next.

I am happy. Please don’t think I am not. It plays a bigger role than the others right now. But, it would be such a different world for me if I could be just plain, unadulterated happy without all the other emotions seeping in to take away what really is . . .

ONE OF MY BEST DAYS EVER!

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.

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.

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

Cancer Stable, Same Treatment Continues

GOOD NEWS!

The CAT Scan (computerized axial tomography- a type of x-ray scan) results showed the cancer is stable!  The treatment is keeping the cancer from growing.  My chemotherapy treatment with the drug Taxotere, and my targeted therapies of Herceptin and Perjeta will continue to occur every three weeks.   (Taxotere attacks all fast-dividing cells including cancer cells and normal cells.  The Herceptin and Perjeta attack just the cancer cells.)  

With that BIG question answered and out of the way, Doctor R. and I were able to discuss the little issues of how Taxotere is making my life a bit unpleasant.

Usually by the third week after treatment, I am able to regain my energy level to a point where I feel close to normal.  But, over the past three treatments I have seen a decline.  I just don’t have the desire to get up and do a lot of the physical aspects of taking care of a home.  Sure, I still throw in a load of laundry, vacuum the floors, and wash the dishes when I absolutely must, but much of the other items I have been leaving until the day I am motivated.  That has happened with the help of the steroids that I start taking the day before chemo.  Those steroids give me back much of the lost energy.  Dr. R. said unfortunately the reduced energy is the result of chemotherapy and most likely will be the trend as chemotherapy continues.  When my energy level worsens to a point that my daily have-to-be-done responsibilities are compromised, then she would cut-back on the Taxotere or cut it out altogether.  The daily must-do-activities for me would be the taking care of my last remaining child at home.  If I can’t take her to her extra-curricular activities or her schooling at home is jeopardized, then something will have to change.   If that is done though, I would not get to return to that drug as a treatment.  That scares me because once a drug can no longer be utilized for treatment the list of drugs to use will be shorter.  Once the last one is used, there is nowhere to go.  The list of drugs for Her2 neu breast cancer is longer than once was the case, but it isn’t that long.

Next, we talked about my lovely fingernails.  Taxotere again is the problem.  With this drug, it attacks not just the fast dividing cancer cells, but also the fast dividing normal cells.  Those include your hair (this is why patients lose their hair), your digestive tract cells (diarrhea, stomach issues, mouth sores), and your fingernails (which get such attractive horizontal ridges plus can turn black from the blood resulting from the nail separating from the nail bed).  I have four nails, two on each hand that have separated partially from the nail bed.  Two have minor nail-bed infections.  I soaked them yesterday in soapy water and then pressed the fingernail to push-out some of the clear-yellowish fluid trapped underneath.  Dr. R. didn’t like my approach of pressing on the nail bed because this can cause more inflammation, but it did made my fingernails hurt less.  She decided to give me an antibiotic to help my body combat this nuisance.    

I have also noticed I am having difficulty finding foods that I want to eat.  Not a whole lot seems appetizing.  I feel hunger, sit down to eat, and within a few bites I no longer want to eat.  Or I will look in the refrigerator, the cabinets, the pantry, and nothing in any of those places seems appealing.  I am also feeling more nausea symptoms then have been noticed by me in the past.  This is just another aspect of the drug Taxotere adding yet another obstacle to my life.  The cancer is a much greater obstacle and Taxotere is helping me keep this beast under control.  So for that, I want to keep it.  And, if the only thing I want to eat is split-pea soup every day with some fruits in between then that is what I shall eat.  

Dr. R. then listened to my heart and lungs.  All sounded normal.

Now, on to the discussion of my scan results…  As I said, all tumors appear stable.  To add some interest to those who enjoy reading such reports I will include pieces of that report here:  “Infiltrative soft tissue in a 2R station measures 1.8 cm.” This is the mediastinal tumor in my chest between the lungs.  The “R” means right-side.  It was 2.8 cm in July, 1.9 cm in April and 1.6 cm in March.

 
“Subcentimeter  hypodensities are again noted in the thyroid gland, stable.”  These are not supposed to be cancerous, but a being watched.

The right lung has several nodules.  Since they have not been biopsied they will not be confirmed cancerous until growth is noted.  I know one is not cancerous because it had been followed for several years with no change.  Because it is calcified it “most likely represents sequalae of prior granulomatous disease”. Sequalae is caused by a previous disease or injury.  Granulomatous Disease could have resulted from an infection such as tuberculosis or from a bacteria or fungi.  “A peripheral 0.9 cm nodule is stable since 3/29/13. Several other scattered subcentimerter nodules are also unchanged.”  Nothing in the report noted anything seen in the left lung.

“A tiny hyodense lesion in segment VII of the liver is too small to characterize but is unchanged since 3/29/13.”  Not confirmed as cancer at this time. 

“There is a nonenlarged para-aortic lymph node in the upper retroperitoneum, previously described as a paravertebral lymph node.”  The retroperitoneum is the area between the two kidneys.  Located between the two kidneys is a vein (blood to heart).  There is also an artery (blood away from heart).  Along the vein and the artery are lymph nodes.  There is something suspicious about this lymph node, but I am not clear as to the why since it is indicated as non-enlarged, but for now it remains stable.

Nothing was found in the scanned part of the neck.

So, there is my report.  Nice 49^th birthday present for me!  Yes, I will be 49 on the 19^th of this month.   

Today was a fun chemo day.  Not usually how I would describe infusion days, but today was different.   A good friend from high school came to visit me.  We talked the entire time.  I must have over-done it because this morning I am more than hoarse. I have totally lost my voice.  My one working vocal cord will need to rest today.  But, my voicelessness is a testament to the good time that I had spent with an old friend.  She was the very first person who introduced herself to me at my new school when my family moved back to North Carolina in 1976 after living in Louisiana, Kentucky and Indiana.  We have been friends ever since.

My next scan will be in February.  Like all cancer patients, I keep hoping for some reduction in the tumors, but I will take stability over growth any day.  So, it was a great day for me, and a very happy day for my family.     

How a CAT Scan Works

Chemo #7

Sept 9 2013
Wow, the day is beautiful!  It is perfect for a road trip.  Too bad this road trip is to Chapel Hill.  Of course I want to go, but at the same time I do not because I hate feeling sick.  I go, though, because I want to live as long as possible. 

Greg and I arrive right at 10:00 am which is the time of my first appointment.  I really am not worried about being late today because I spend quite a bit of time waiting for my appointments anyway even if I arrive early.  It was true about my having to wait.  I was called to have my port accessed and blood taken at 10:37.  Then I went to the next area to alert all involved that I was ready for my next appointment.  Today I was seeing the nurse practitioner, Ms. O., instead of my oncologist.   I had met her previously and liked her right away. 

The best description of how a CAT scan works

Today, there was still no radiology report from UNC-Chapel Hill.  The nurse practitioner said she would look into why this had not been done.  “You requested it, she said, it should be here.”  In the two previous appointments, I had requested that someone at UNC-CH look at my CAT scan to determine if the lung tumors had possibly shrunk. On an earlier scan, the largest was 7 mm with 5 tumors being seen.  On the newest scan the largest was 3 mm and there were only 2 tumors noted.  In an effort to try to explain to me how this might have occurred, Ms. O. gave me the best analogy I have heard on how a CAT scan can miss tumors and how a large tumor may appear smaller than it is.  She explained it this way.  “Think of the area to be scanned as a piece of bread with raisins scattered throughout.  The scan slices that piece of bread every 5 mm.  The spaces in between are where tumors 
cannot be seen.  For a larger tumor, the CAT scan may only slice the tumor at the end of it therefore it may show a 3 mm sized tumor instead of the 7 mm that it may actually be.”  That created a wonderful visual for me.  So for now, I will have to let go of my hope that the tumors have shrunk and be thankful that everything appears stable at this time.

Note:  My oncologist has said the CAT scan can show tumors as small as 2 mm. 

Side-Effects

We also discussed my diarrhea problem.  Ms. O. let me know that I could take more than the recommended dosage of Imodium until it was under control.  She said, “If you become constipated then you know you have taken enough.  One thing you can do is keep a journal of what you eat and drink to see if what you are eating is causing the diarrhea.  Then you would know what to avoid.” 

Flu Shot

During my conversation with Ms. O., I inquired about getting a flu shot.  In the past, I have not had the flu shot because I believed the shot was developed for the new flu season based on what developers believed the strain would become in the following flu season.  The vaccine was an educated guess, so there is no guarantee.  With all that being true, Ms. O. still believes I should get the shot.  I really don’t want to get sick especially with my compromised white blood cell count.  I expressed concern about getting sick from the inoculation.  Ms. O. said that the shot is fine.  You should stay away from the nasal spray because that contains the live virus.  You could contract the flu from that.  So with that, I suppose a shot is in order.

Shingles Shot

I also inquired about the shingles vaccine.  Ms. O said not to get that vaccine because it was only given nasally and, like the flu vaccine, it contains the live virus.  There is no shot for that one.  With a compromised immune system, I won’t be getting that vaccine.

Cough
Since I am having a difficult time figuring out what the cause of my coughing is, I asked Ms. O. if it were possibile that my cough was caused by the nerves surrounding the tumor between my lungs. She said, “It could, but really there is no way to be sure.  You should consider continuing to use your daily inhaler as this may help keep your airways open”.  The inhaler tends to make my hoarseness worse, but the coughing episodes are completely unpleasant.  I will go back to using my daily inhaler.  Perhaps I will notice a difference this time.

Lympheodema
I had one mild complaint for Ms. O..  My lympheodema in my right hand had worsened.  She said, ”Taxotere is to blame.  It causes inflammation and causes edema (swelling of tissues), so there is nothing I can do but to wear my compression glove.  It is just another aspect of the new me.  Yuck!

Weight
My weight is now 102.7 pounds.  I have gained over ten pounds since my treatment began.  My weight had gotten so low before I knew the trouble my body was really facing.  Irritable Bowel Syndrome was to blame.  It left me eating very plain food and lots of water.  For months, I had sought help from two gastroenterologists.  The last one sent me to Chapel Hill since he couldn’t figure out why I was not responding to the drugs that had been prescribed.  The doctor at UNC-CH explained that I was being over-medicated for acid reflux.  This was not my problem.  He prescribed the right drug and soon I was eating and drinking whatever I wanted. 

The steroids, too, have probably helped me gain weight.  I am glad I have gained weight, but, the negative aspect from steroid use is it tends to swell my belly area.  It makes me feel really uncomfortable.  Stomach pooches have always been my nemesis, but this feels much worse.

After the doctor, it was on to the infusion room.  The appointment was at 12:00, but of course there was the waiting time.  By the time the pills were taken, the Pepcid had been given through my port, and the saline solution was dripping into my body, I estimated all would be completed by 5:10 pm with still two hours to drive home.  That is a better time than many of my previous appointments have been, so a good day overall.    

The Back Story - Part 2

Chapel Hill

April 15^th
The trip to Chapel Hill took just over 2 hours.  I took apart an old quilt while Greg drove.   The conversation between Greg and I was simple with an occasional comment about what was being discussed on the talk show coming from the radio. 

The parking deck was on the left after we entered the UNC Health Care Complex.  To the right, perched on top of a very large hill were the different hospitals each with a specific specialty.  The farthest building on the right was my destination, the Cancer Hospital.

After parking, we walked up the hill and entered the building through the electronic doors.  We continued walking until we found registration where I checked in. 

Since we were early, we decided to get a bite to eat.  We found a cafeteria in the Children’s Hospital which was the building next door.  There, we grabbed prepared Caesar salads, found a table, and sat down to eat.  I had a hard time eating mine because the dressing was too powerful.   The mood was somber.  I eventually broke the silence by commenting about the young boy that sat at the table next to ours.  

“Can you believe that little guy beside me ate both of those huge pieces of pizza?  Our son would have had no problem finishing those, but he is not as small as that kid.”

We soon cleared the table and headed to the second floor where my appointment was to occur.  I checked-in at the desk, and we sat down to wait.  We didn’t sit long before being escorted into a room to wait for the doctor.  It was late in the afternoon and the atmosphere had an odd quietness about it.   The room was small with a large window which allowed for a great view of several other buildings.  The sun was filing the room with light.  That has always given me a most wonderful sensation.  But, today I could not quite capture that essence.

First the nurse came in to go over the medications I was currently taking.   Soon she left and a young girl arrived to ask if I wanted to be involved in a study.  

“I would only have to fill out a survey every so often”, she explained.  

My input would provide information to the doctors about my lifestyle and how it affected my diagnosis and outcome….something like that.  I declined to participate today and asked if I could think about it for later.  Privately, I was a bit annoyed because I am a new patient dealing with my own new situation.  I did not need to be bombarded with that type of decision now, at least not today. 

Next, a woman named Ms. B., a nurse navigator, walked into the room.  She was someone I could call if I didn’t understand something or needed help getting information when no one else is helping.  There was a short conversation about where we were from and how she knew some people in a town not far from where we lived.  She remained in the room when the oncologist arrived. 

Dr. R. was and is much younger than me.  I am guessing she is in her early to mid-thirties.  She is petite with straight, short, brown hair.  Her questions to me began with the drugs I am currently taking.  Then she listened to me tell my story matching it to my documented medical history and to my most recent scans.  I saw her glance at the page that I had completed as I waited in the lobby.  The question I had answered explained why I thought I was seeking medical attention.  At the top of the page I had written “metastasis to internal mammary nodes”.  At that moment I believe she realized that I wasn’t in full understanding of my condition.  

She said, “Let me print out a copy of the radiology report so we can go over it.”   

Dr. A. had not mentioned anything about my lungs, but somehow I felt that didn’t mean my lungs weren’t involved.  I was physically shaking fearing what I was about to learn.    

First, my thyroid was reviewed.  It had a few sub-centimeter hypo-densities.  She didn’t think these were concerning.  

Next the report described the 1.9 cm anterior mediastinal paratracheal mass surrounding the right brachiocephalic artery.  I was aware of this mass, but now I had more information about it.  At this point, though, I had not comprehended all the details. 

The doctor explained that this mass was responsible for my hoarse voice.  It was pressing on my vocal nerve.  I had been experiencing hoarseness since July.  At that time I had gone to see an Ear Nose and Throat specialist and was diagnosed with a paralyzed vocal cord.  He ordered a CAT scan of my neck to make sure that no lymph nodes were enlarged and pressing on the vocal nerve.  He let me know that breast cancer can present in this way.  It revealed nothing suspicious.  If a CAT scan had been done of my chest at that time, I probably would have been made aware of my condition sooner. 

Then Dr. R, said, “Your right lung has scarring from prior radiation.” I looked down at the report without really reading it and took a deep breath……” you have several nodules in both your lungs.”  All I could say was “shit, shit, shit!”  Oh my God, I am going to suffocate!  I truly understood at that moment why people jumped off of bridges.

I tried to get control of my emotions.  Greg quietly sat beside me.  I said, “Ok, all we can do now is extend my life, what do we have to do?”  

Then I looked at Greg.   I suddenly looked in his eyes and started sobbing again.  

“I am so sorry, I am so sorry.”   

I turned back to the doctor and explained that we have had such financial difficulties over the past few years.  This was happening at such a bad time.   (I was feeling tremendous guilt at that moment because I knew it was going to cost plenty to keep me alive.)  I don’t remember Greg saying anything.  He either had his hand on my back or on my leg.  I believe he just didn’t know what to do. 

I don’t remember anything else the doctor said about the report. 

She then talked to us about all the counselors that were available to help not just me but the entire family.  Throughout my life, I have never sought counseling.  And, honestly, the only help I needed or wanted was to get rid of this cancer and not be in this situation.  No counselor could do that.

Next the conversation was about where I wanted treatment to be done.  She was agreeable that Wilmington would be best since it was close to home.  She said she would call the pathology department in Wilmington to find out what the test results were for my specific type of breast cancer. On Wednesday, her team would discuss my situation and come up with the best and most appropriate plan for treatment.  I was to make an appointment with Dr. A. in the next few days.  She would speak to him and then give me a call.

When the doctor departed to contact pathology, she had suggested I take some Ativan to calm me down.  Throughout all the years of this struggle or any other struggle for that matter, I never took any kind of antidepressant or anxiety medication, but today I said, “Fine, bring it on!”  Two little pills later and I was calmly talking to Greg about how we should tell the kids.  I didn’t want anyone else to know because everyone feels sorry for people when they are sick.  I didn’t want that.   I want them to say, “Hey, Lisa, how are you?” not, “Hey Lisa, how ARE you?” with the real question hanging in the air being specifically about the cancer. 

After the doctor returned, she said that the Her2 neu test had not been run.  She stated that there might not be enough tissue from the biopsy to run the HER2 neu test and to find out how much estrogen and progesterone were affecting the growth of the cancer.  

I asked, “Why did those need to be run when it was clear the cancer was breast cancer just like before?"  

She said, “Sometimes breast cancer changes.”  

The type needed to be confirmed so the best treatment would be given.  If there was not enough tissue then another biopsy would need to be done.  Instead of the fine needle biopsy that had been done previously, a core biopsy would be performed allowing for more tissue to be taken.

We left that afternoon with the understanding that the doctor would call me after her meeting with her team of doctors.  She would call me to let me know, after speaking to Dr. A., what their recommendation for treatment was.    

The trip home was horrible.  I cried and Greg just held my hand.

Please no! I can’t leave my children

Well, I must say an incurable stage IV diagnosis, especially when you have 4 children that you love so deeply, is the worst possible news.  I couldn’t shut the thoughts swirling through my mind of what this diagnosis meant.  For the past 18 years, I have been driven to care for them, educate them, keep them safe, and love them.  My one goal has been to be there for them into adulthood.  How could this be happening?  It was out of my control.  The cancer was relentless.  How will Reese truly remember me?  She is only 10.  She hasn’t lived long enough to really get to know me.  It was my job to take her to gymnastics, dance, piano or tennis or whatever.  I was so looking forward to doing with her what I had done with the other three. 

I want to be there for all the different phases of my children’s lives.  To see them get married, have a career, or just be an independent person.  This nightmare was happening because of a few microscopic cells that were missed during my mastectomy.  I should have been cured.  And then almost 5 years after my mastectomy, chemotherapy and radiation and a year of Herceptin just couldn’t stop it. 

It can’t be true

After that horrible day of April 15^th, I remember on two occasions as I was sleeping I awoke with a jerk.  My body suddenly tensed and once I relaxed I had to remind myself that it was true.  I was in fact going to die.  Not the “Oh, one day I am going to die, but a complete realization that I am going to die, sooner than I had planned.  My time might be 6 months, 3 years, or 5 years.  No one knew how long.  The fact was, I would be really lucky if I lived another 10 years.  That is a whole different concept than I am going to die one day in the distant future.  Everyone knows that.  And the fact that I will never feel as good as I feel today, which, by the way, isn’t the best I have felt in recent years, is truly a reality my consciousness was having a hard time accepting. Hopefully, my health will decline slowly.  I silently, secretly tell my body, “kill the cancer, kill the cancer”.  Could it?  Maybe there is a miracle ahead.  Sure, not too many miracles have happened to people in my situation, but maybe?  Please…

My husband

So now I know how bad my situation is.  Greg ended up breaking down after he called his mother and told her the news.  He let go of all the emotions he had caged inside him only after he sucked down a few shots of Bourbon.  That made me furious.  I want to see that he cares enough to be emotional about the situation, but alcohol has no place here.  See a counselor, take some Ativan, but please no alcohol.  I have never seen anything good come out of being intoxicated by alcohol. 

The Plan for Treatment

April 17
Dr. R. called me Wednesday afternoon.  She said that my first line of treatment should be Taxotere, Perjeta (pertuzamab- out since June 2012), and Herceptin.  This would be the plan as long as the Her2 neu testing result was positive.  Prior to calling me, she had spoken to Dr. A.   I mentioned to her that I felt like he did not want me to be his patient anymore.  She said he was taking notes and seemed to be on-board with the plan.  I thanked her for calling, and I believed at that point I would be receiving my treatment in Wilmington.

Dr. A. called me the next day.  During our conversation he asked what treatment Dr. R had recommended.  I told him and found it odd that he would ask since Dr. R. had told me she had spoken with him.  He asked about the Her 2 neu test.  

I then said, “This is really starting to make me mad.  Why hasn’t this been done?”  

He said he would talk to his nurse and get back to me.    

At this moment in time, I began to think that the relationship I had with Dr. A. was not a good one.  I went over the events that had occurred in my mind.  My biopsy was done on April 4^th.  I got the call Thursday April 5th from Dr. A. that he wanted to send me to Chapel Hill.   The slides from the biopsy had been sent to Chapel Hill on the 12^th along with my medical records and scans.   I learned I was stage IV on the 15^th from Dr. R.  It was now the 17^th.  Even though Dr. A. had decided he wanted me to go to Chapel Hill, it seemed to me since I had been his patient for three years that he should have completed the necessary steps to make sure all the information about the cancer was available so treatment could begin.   But for some reason he had not done it.  Plus, why had he not told me the extent of my cancer?    Because of this lack of work on my behalf, I called Dr. A.’s nurse and told her I had decided to have my treatments in Chapel Hill.

The next day, I called Chapel Hill and spoke to Ms. B, the nurse navigator.  She would become my contact person for anything I needed medically.  I told her I had decided to have my treatments in Chapel Hill.  She told me that Dr. R. had been quite flabbergasted that Dr. A. had not ordered the Her2 neu test.   As the conversation ended, she said she would set-up my next appointment as well as my first infusion.  When it was scheduled, she would call me with the date and time.

And, so it begins . . .