Featured on Everyday Health Website

At the end of January, a video production company interviewed me and my daughters for a possible feature on a website called Everyday Health. It was quite a surprise when I was contacted a few days later to inform me I had been chosen. My daughter, Audrey, spoke for the family.

The first video is called What my Mom's Metastatic Breast Cancer Means to Me; the second is called Diagnosed with Breast Cancer the Third Time Around.

The videos produced were released on March 18th. There are two.  Click the links below to see the videos. You will be redirected to the website.

https://www.everydayhealth.com/breast-cancer/women-with-metastatic-breast-cancer-videos/#what-my-moms-metastatic-breast-cancer-means-to-me

https://www.everydayhealth.com/breast-cancer/women-with-metastatic-breast-cancer-videos/#diagnosed-with-breast-cancer-the-third-time-around

While you're there, explore the website.

Thanks for watching!

Life Everchanging

I would rather not write about this part of my cancer story, but I have held off long enough.

I always knew progression would happen, again. Having had over four years of stable disease, I had become happily less fearful about my scans showing my disease was active again. I would never describe this lessened fear as thinking I was cured. I did, however, want to believe in that possibility. Just like I wanted to believe that my marriage would never fall apart yet it did.

Two devastating events happening at the same time is . . . well, I am sure you can imagine how difficult my life has been over the last 6 months.

For the past 8 months, my oncologist and her team would review my chest scans. They were never in complete agreement that the one mass of lymph nodes—that has been my nemesis since the beginning—was enlarging. The growth was a few millimeters each scan every three months, but that tiny increase did not warrant a drug treatment change. There was the nature of a CT scan to consider, and the fact I had been ill with whatever germs I had picked-up unknowingly from a third grader which might be causing those lymph nodes in the middle of my chest to enlarge. There were times I thought maybe my oncologist was being kind and not wanting me to worry. But, she has never been that way—always direct, never sugar coating anything regarding my disease. Time was needed to conclude true progression.

The most recent impression from my CT scan was stated this way by a radiologist: minimal interval increase in size of conglomerate soft tissue involving the upper mediastinum with slightly more pronounced mass effect on the lateral wall of the trachea. This mass, considered fused together lymph nodes, is located between my lungs, snuggled against my trachea, and in an area with important blood vessels making it hard to reach surgically. Its increase in size has caused my normal tubular trachea to turn into a “C” shape at the location of this mass. Now, as you might have guessed, the time had come to face reality. My mass was in fact progressing. A treatment change was in my future.

Years ago I wanted this area of death radiated. It was decided, though, that it wasn’t a good idea due to my prior radiation treatment having occurred around that location. Too much radiation to one area is not good. I have had two so far. The first radiation I received happened after my stage 1 diagnosis. Those beams were directed to the lymph nodes under my right arm and to the location of the 5 mm mass that was removed a couple of inches below my collarbone in 2009. The second was to the single nodule that progressed in my right lung in 2015.

The troubling result of this mass essentially working toward crushing my trachea prompted me to ask that we revisit the possibility of treating this mass with radiation. Years have now past since this area was radiated making it safer to radiate again--hopefully there would be minimal to no crossover when the plan was executed. Plus, the drug Kadcyla has been wonderful to me in terms of side-effects and control of my disease therefore I wanted to avoid moving to other drug treatments.

I met with the radiation oncologist at UNC Hospitals. She was warm and made me feel like she would do everything she could to help me. She made me feel I mattered. As any patient knows, that is crucial. Radiation was going to happen.

The following three weeks, (Feb 24 through March 13), I worked four hours and then traveled to UNC Hospitals (2 hours 15 minutes one way) Monday to Friday. My secret that I have kept from my team and the administration at my school is no longer hidden. Never did I want them to know, but with having to receive treatment for 15 consecutive days, minus weekends, they had to be informed.

My next scan is May 4th. That will be a nerve wracking day.

The rest of my life has been emotionally charged as well. On March 23rd I moved out of the house I have lived in since 1999. I raised my kids there. The memories inside those walls fill every single crevice. I am heartbroken to leave it all. The decision to move away from my husband of almost 27 years was not easy, but I had to do it, for myself. The reasons are many, but the most difficult one to deal with is this: an alcoholic will always choose alcohol over you. If I wasn’t the priority, if I wasn’t being respected then why would I stay? Why would anyone?

So, today, during this Coronavirus Pandemic, I am forced to quarantine in my new place because being a cancer patient in active treatment puts me at high risk for contracting that disease. Being trapped within my four walls has allowed my stress levels to come way down as I work my way through my things finding new places for them to reside. Despite my worries about the economic consequences of this pandemic on individuals and society in general, my being able to wash away so much of the stress I have been experiencing has been a great relief for me personally.

In the next few months, I want to be able to sit back and happily proclaim I made the right decisions concerning my treatment and my future divorce. This combination of events has been so very hard. Only the passage of time will I know if all my decisions were the right ones.

By the way, April 1st marked seven (7) years since I found out my disease was still trying to kill me with the CT showing the mass that was just radiated--along with lung nodules in both lungs that have disappeared. Seven years!! Fifteen years since my diagnosis of stage 0. I think that is amazing.

Just Pretending I am Normal

If it were not for the help of modern medicine, I would not have celebrated my 54th birthday. 54! I have lived longer than my parents who died at 52 and 53. No rationale to explain why it was important to me to outlive them, but it was.

I made it passed 54 birthdays. I have been able to witness my face change as the gravity of our earth pulls without mercy causing me to agree that plastic surgery might not be such an over-the-top procedure of self-consumed vanity after all.

My birthday came without a lot of fanfare, but to me it was the greatest of days. And with the greatest of days come the other days where I am tired of worrying about dying. Every day it seems in social media someone has died. Poof! They are extinguished from existence. We are all so fragile.

Death is final. It is not like losing a job where you get to pull yourself together and start fresh and find an employer who sees something in you that others did not.

A person dying cannot say, “Hold up, I need a few more days”. Death comes and overtakes you without an apology—not that it can give one—and without any concern for what you needed to finish before your heart no longer beats.

I know death is all part of the circle of life and all that soft language that makes death a lighter subject to talk about. But, the unfairness of how some get to live into their 90’s and others don’t get to see their first birthday is simply extreme no matter what kind of reason some people try to attach to it.

Knowing I am dying—not because I am alive but because I have a terminal illness, does make me think sometimes that my exercise routine that I started in August is a waste of time. I mean, I could be doing something else with that time, but I keep doing it anyway for the “just in case I keep living” scenario or maybe it is partly because I want to pretend I am fine. 

Lately, the metastatic social groups on Facebook I follow have caused me to want to stop looking at my newsfeed. All the sad stories of struggle and sadness can be overwhelming. Since 2013, I have consumed as much information as I could about my disease, learning from others in my desire to keep hope alive. In the beginning I jumped right in and embraced those stories and let them be a part of my life, but I have noticed a change in me. I am finding I want to turn it off. Is five and 1/2 years of letting MBC be at the forefront of my thoughts simply too long? Have I reached the so-called “breaking point” where it is all more than I can handle? I have been slowly pulling away from it, no longer stopping for those stories of people needing help, needing someone to hear them. I feel guilty for being selfish in my needs when their needs are as important as mine.  Yet, I am finding I want to forget about cancer, pretend I am the old Lisa. I want to not be living day to day worrying about my every ache and pain, fearing that my coughing or my recent lower and upper back pain is my disease saying, “Ha ha, you are really screwed now”.

Over the last few months, I have been getting the momentary sense that I am paralyzed. I can’t move because I feel unenthusiastic or unmotivated to do much of anything—stupid thoughts of death creeping in to steal my joy, my sense of worth. It is short-lived, but I know that if it takes hold I won’t be able to find my way out. So I switch gears making myself get up and get going. I feel like I am walking too close to the edge of despair where a person finds they are drowning and can’t save themselves, a place I have never been and don’t ever want to be. So, I will find the comfort I need through pretending I am fine because sometimes a person needs a vacation from cancer.

Staying busy has always helped lessen the negative thoughts that go with my situation. So that is what I intend to do. Soon the decorations will come down from the attic and adorn my home, all my children will be physically here, and I will see another Christmas—my 6th since my induction into the metastatic world. I will enjoy every minute of it. For the next month, I am going to do my best to close the door on my disease, so if you don’t hear from me in December, don’t worry, I am just pretending I am normal.

Opening Doors to a New Chapter

At five in the morning, on January 3rd, the last of my three oldest children left my home heading for her new apartment in a new city soon to be starting a new career. Prior to this change in her life, she was teaching in Japan. Before she left for Japan, I would tell her, teasingly, not to fall in love with a Japanese boy--I feared she would not come back to live in the states again. Turns out she didn’t meet a Japanese boy. Instead she met an American boy—an American boy in Japan, surprise! Both are back in the USA, and she has accepted a job in his home state. At least that state is only one time zone away from me instead of the 12 hours that Japan is making communicating sometimes tricky.

Watching my three oldest children leave my home to travel to their new homes is always a hard process for me. I become excited then I grieve. I become acquainted with happiness again upon remembering they have successfully made the transition to adulthood, and my job is done. When I brought them into this world, I knew at some point my children would leave, however I never fully explored how I would feel or behave when it happened. It was a door I wanted to remain shut. With each choice they made on their way to adulthood that door kept trying to open despite my holding tightly to the knob on the other side. It hurt the first time they left, and it hurts now even as I have learned to accept their living far from me in three different northern states—daughter #1 in New York, my son in Maryland and daughter #2 in Illinois.

Daughter #3 has a few years before she is off to college, so my home is not void of children yet. In September she also experienced a change in her life causing me to be able to spend less time with her—another opening door only this time it was forced open by me. After much thought, I decided to stop homeschooling her. Not because I no longer enjoyed teaching her or learning was not taking place, but because I wanted her to have a routine she could focus on if my health went in the wrong direction. Together, we worked to complete the application required in order to attend an early college high school program. She was unsure, but I knew this was the right thing to do. When the acceptance letter came in the mail she expressed remorse to no longer being schooled at home. I shared in that remorse, but also found I was relieved—still am; her next four years had a set course that would go on if I could not. She recently completed her first semester with an “A” in every class. It has been a wonderful change for her leading to my decision to seek a change in my life’s routine, too.

Never did I think I would be able to do this again in my life, but in November I applied, interviewed, and was hired to assist in teaching in a 21st Century Community Learning Centers Afterschool Program in a local public elementary school. In mid-December I worked four days before the Christmas holiday season began. It made me feel I was contributing to society again while also adding to my family's income depleted by my medical bills. 

As I prepared to settle into my new routine with the beginning of the New Year, snow fell upon the East Coast including my state of North Carolina. Students went to school and then were sent home due to the predictions of traveling conditions worsening all before I set foot through the doors of my new employer in 2018. I must admit, it was a nice bonus to have a few extra days added to our holiday time and a nice reminder that every time my daughter is out of school, I am off too. Nice right?

When snow falls and the temperature is just right, snowballs and snowmen must be made. My daughter and I had a blast building Mr. Snowman with the rare three inches of snow that fell on January 4th.

Scans for me are January 29th. I don’t want to think about progression, but unlike my children one day growing up and leaving home that I tried not to think about, I have to open this door because if I don’t I may take too long to recover from my resulting grief. I role-play in my mind how I will react if the news is good or if the news is bad. If the news is bad, I know I will revisit despair, but I also know I will not travel there too deeply because I have already been there. I know now, too, I must stay focused on the things I wish to accomplish in my mortal life. In the meantime I will continue hoping for "no evidence of disease" on this next scan. If it isn’t then I will deal with whatever that entails and deal with that new chapter. 

Perhaps it is cliché to talk about life’s changes as chapters, but for me that is truly the best description of all the changes that happened in 2017. My oldest children are working and doing adult things; my youngest is now in public school; I am getting paid to work. These are huge changes for me; ones I never thought I would see. Changes that have given me a new chapter in my life that hopefully will continue for the 360 days left in 2018. Maybe even beyond.

Stealing Grief

It happened again as I awoke this morning. I relived a moment in time that I can’t seem to shake completely.

While visiting a few family members several months ago, I had an emotional melt-down, a complete loss of control. It took one set of words built upon by another set of words to take me there. A place I didn't want to go, but go I went. Those words flowed into my ears, my body trembling as I heard them. I reacted by leaving that room escaping into another while throwing out a vile word as I fled. Those words between me and two others fueled by those two hoping to control my thoughts about another broke me. It brought the mountain of rubble in my life tumbling down upon me. Cancer has taken enough control from me; it makes me weak as it lives at the edge of each my thoughts. I needed to hold on to the hope that the two people I love will once again have a relationship after their anger toward one another has softened. The conversation confirmed that the empty space between them will grow once I am not there to fill it. There will no longer be me to bring them together with stories of how the other is doing. It hurts me so much.

In that other room away from everyone—but really not—sitting on the floor with my back against a closed door, I sobbed, bawled, and even wailed at the most intense moments of my pity-party before my rational-self returned. The troubles of my internal world surfaced needing to escape, so I let it. 

I learned later, begrudgingly, that the people present in that moment characterized my crying as rage. There were moments I am certain I sounded angry. I was. But, no punches were thrown at walls, all furniture remained unmoved, no door was slammed.

In the midst of that emotional outburst, I needed—hoped—everyone there would seek to understand why I reacted the way I did. But they didn’t. Instead I was shut out when I returned to that kitchen table. The curtain had been closed. I was ignored. No one bothered to ask questions in an effort to understand my loss, the grief I was feeling concerning me and the estranged individuals who have not talked to each other for seven long years.

Our society doesn't like grief. It's uncomfortable. Instead the grieving, or depressed, must drug themselves or see a therapist giving their pain to a stranger so loved ones don't have to deal with it. This is a sad commentary played out daily in our world. A world in which people do a great job of offering money, clothes, and food for people they know or will never meet. Few, though, are able to offer emotional help. Sadly not even to the people right in front of them. Emotional support is the hardest to provide. It requires time and patience. It is an offer of help that can expose themselves to someone's pain, or potentially their own. Who wants to do that to themselves? Yet, it may actually be the most necessary and most beneficial kind of support. The best help isn't always from material things. The best help can be to offer a sympathetic ear, to engage in conversation; it doesn't have to be about sad things either. Take time to ask an individual about themselves. Allow them to share their feelings or just get them to talk. It will make that person feel you care. And maybe for those few moments they will forget about their suffering.

Later, the two people who were engaged in the conversation that brought me to the place I am today, showed compassion and understanding. For that I am grateful. They showed they cared.

I thought that would be the end of it. I returned home and life continued as it always does. But it wasn’t. The saga of my outburst followed me into the next week. I received two letters: a solitary note and another neatly folded atop a book called The Second Bookend—I have yet to open it; it is supposed to be a guide for the dying showing how to approach the end of their lives with love instead of fear. For the writer of the letter, perhaps, it was the best they could offer in terms of helping, but the words they chose to write for me to read were biting. On a white piece of paper weren't words of warmth, caring, and support. Instead the writer wanted me to know they thought I would one day commit suicide. SUICIDE. Imagine how abrasive that was to read.

I have thought about why someone would choose to commit suicide. I have thought about how a person might think that their lives are meaningless to them and to others, how the emotion of hope for a better tomorrow for them was lost and their place in the world not worthy of their living in it. I can imagine being so sick physically, so tired of being sick, so tired of feeling like a burden on others that you just want it to stop. I believe assisted suicide should be an option for anyone with a terminal illness because death is inevitable. The end will happen, and we must accept it. But for me? No. I have never felt so broken that I thought about killing myself. Will I ever? I won’t know till I do. All of this begs the question—why the hell would anyone think sharing their thought that one day the person they were speaking to would commit suicide? How is that an appropriate response to the emotional behavior of a terminal cancer patient or anyone for that matter? Is that what should be said to someone who is grieving the loss of so many things including the loss of the relationship between two of that person’s family members?

Obviously, I continue to be troubled by the response of one person to my emotional outburst of which I apologized for and one of which I hold deep regret that I lost control. This person was not involved in the conversation that led me to hide behind a door flinging my sadness into that bedroom. They didn't know the complete history between me and the other two people who were at that kitchen table. Nor did they know all the words spoken between us. They were a distant observer.

Though the thoughts of that one emotional hour over a weekend of many hours have lessened, her words will go under my list of "things NOT to say to a cancer patient ever!" I must remind myself that people have their own ideas of how to handle struggles, and though some may feel my way is wrong, it is my way. I write. I think. I talk. I yell, and I cry--not always with such intensity. Today, instead of crying, I am writing. Now that my thoughts are here in front of me in an attempt to soften the blow I felt by the words of another, I tuck my sadness back inside me and put my feet in motion. I'm off to tackle the rest of my day leaving behind that moment in time. I have more important things to tackle.

I read a blog writing by someone once whose words have stuck with me—I wish I could remember her name. She said, “They stole from me the desire to grieve the way I needed to grieve.” I think that is what happened to me on that day in June. My grieving was loud and uncomfortable for those few people present. And yes, I didn’t do it the way some think I should have, but it was my way of grieving. I didn’t hurt anyone; I didn’t hurt myself; I simply grieved. 

My Story Continues

Many days of happiness have been part of my life since my diagnosis in April of 2013; far more than I expected. Constant fear does linger, though, in the background. Every time I lie on a CAT scan table to be scanned for detection of disease progression, I shake. My shaking is from fear. Fear that the result will tell me my timeline has shortened yet again and that sadness will race in front of my happiness.

After my 10:00 am scan on November 6th, my husband and I finally reach the room where we waited for my doctor. She knocked on the door then entered. We exchanged our pleasantries. She washed her hands, and we braced for the results of my scan.

She began: “The radiologist has not read your chest scan yet. I’ve looked at it and see no changes. I still need the radiologist’s read on it, but I see no reason not to treat you today.”—not her exact words, but close.

I expelled the breath I had been holding. But, a little of that breath remained inside me. I needed to see the report and read the words of the radiologist.

At the end of our meeting I asked if I could have a scan in six months instead of four. Dr. R. agreed and says, “Infusion #59 is not the norm. We are now in unchartered territory.”

A little unnerving, but good words nonetheless.

To infusion I went, trying not to worry about what the radiologist would report.

At home the following day, I waited for a call from my doctor and for the report to appear on my patient portal. It was getting late and because I hate to wait I messaged the nurse navigator. Soon, my doctor called saying she had delayed the release of the report because she wanted to talk to me first.

Uh oh, here we go, I thought.

“There is some change around the fiducial markers,” she said.

She explained she thought the increased density was due to continued changes from the radiation I received. (My last treatment was November 11, 2015 to one lung nodule in my lung.) She was hoping to speak to the Cyberknife Radiation Oncologist before calling me, but had not heard back from him. She didn’t want me to read the report without her input. That is why she had not released it. 

After we hung up I went to the patient portal and read my now released report. I took the information she gave me and searched the internet for more information hoping to understand these words:

"Mildly increased right middle lobe density about the fiducial markers."

I will get more clarification from my doctor, but for now this is my understanding of what is happening in my right lung:

After my radiation treatment, my nodule disappeared. What was left were called ground glass opacities. These can indicate progression, but in my case it is due to damage caused by radiation. (The fiducial markers were placed prior to radiation treatment and marked the location of the tumor. The markers are made of gold and will always be visible on a scan.) Opacities are cloudy areas that are just clear enough for blood vessels or other tiny structures of the lung to be visible. When these areas become denser, cloudiness increases and less can be seen. It can mean progression or continued radiation changes.

Several days later, I received a call from the scan department at my treatment center. I was told Dr. R. wanted to add a scan to my appointments scheduled in January. That call confirmed to me that since this wasn’t a six month scan nor was it a four month scan, my last scan must indicate progression.

Yeah, a few tears came after the call.

But . . . another call came soon after from my nurse Navigator. “Lisa, good news!” 

“You are kidding me!” I said. “The CAT scan department just called, and I had convinced myself it was bad news.”

She chuckled and said, "No, no. The radiation oncologist believes the changes are from the radiation and NOT progression”. We want to do a scan in January just to make sure.”

Through this 2016 Thanksgiving holiday and after passing the 53rd date of my birth on November 19th, I continue on the happiness train hopeful the train is not about to derail. In January, I will do my best to still my shaking body as that machine provides a picture of my future. For now, my story, filled with hope and happiness, continues.

I Want To Be Heard

We were riding the train in the Cincinnati airport after a long weekend of family tied together by people from long ago. My stop was terminal A, hers terminal B.

As my stop approached, the two of us standing beside each other holding onto individual poles preventing us from falling, my aunt looked at me and said, “I couldn’t read your blog.”

Before that moment, I assumed she had forgotten I had a blog. On our second full day together I learned that she did not understand stage IV breast cancer is terminal asking me, “So what is your diagnosis?” So, bringing up my blog at the very end of our time together did not exist on the list of things I expected her to say.

I quickly jumped into protection mode not wanting to hear any negatives about my writing. “It’s okay,” I said. “I was really depressed in the beginning. It isn’t so dark now.”

Because I was able to get to know her better over those few days, I know now she was not bringing to light any negatives about my blog. She brought it up to tell me she now understands why I have a blog.

The train stopped. Before I departed my aunt said, “I think you want to be heard.”

Nodding my head I said, “Yes, I think I do.”

We hugged goodbye. I departed the train giving more thought to what she had said, the doors closing behind me.

She is right. I do want to be heard. I want to be heard, but I want the people who are part of my life to want to hear me. I don’t want to force it upon them in conversation. I want them to take time out of their day to read what I write because they care about me even if it makes them uncomfortable.

I have long suspected that the very people I wanted to read my blog did not. Those family members were the people I targeted when I first began to write--along with a few friends. My expectations of what I think family should or should do or be to one another are often much higher than what reality actually gives me. This is proof of that.

Maybe I am asking too much. My want for people to read my blog so they understand my emotions connected to my death is perhaps more than they are willing or capable of doing. Breeching the subject can be highly emotional. It could cause me pain and pain for them as well. The conversation of death is often avoided because dipping your toes in it may cause a dam to break. Staying clear keeps everyone from drowning. There is a great need to protect against that. I get it.

On occasion I have slipped into a conversation with a family member about my disappointment that no one except my two oldest daughters read my blog. That little push has caused them to take a moment to let this part of my life into theirs. I might hear something small about it the next time I speak to them but after that, nothing.

I feel selfish feeling this way. There is nothing so special about my thoughts that must be read. But I do want to feel as if my thoughts and words matter to them. Then, maybe, once in a while, when they are telling me about their lives they might acknowledge that my world is different. One where I have to consider I might not be here next year while they get the luxury of planning their future years not aware as I am of a timeline with an endpoint in the not so distant future—statistically speaking. The two perspectives are vastly different.  

So yes, dammit, I do; I do want to be heard. I want people to know what I am going through. That I am scared, hurt, and full of pain, rage and self-pity for a disease I cannot control. And I am jealous, yes jealous, that the people in my life can pursue things that I will never be able to.

Yes. I want to be heard. As another scan approaches--June 26th-- my fears are enhanced. That day I must rise much too early in the morning and journey to a machine revealing my future is the day I need to scream into the universe because I don’t know what else to do. This blog lets me do that. I am screaming in this post. My life and my death are racing each other.

I need to give away my grief. Put it out there so I don’t feel alone trying to live as I do constantly having my death hovering over me. It never leaves my thoughts, how can it?

I carry cancer with me, everywhere. I carry the thought of dying, everywhere. When I am tired, my defenses are weakened and can easily reveal on my face my feelings if prompted by the right stimuli. When everyone around me is struggling to be heard about the things that are bothering them, I am struggling too to keep myself from letting loose and scattering all of me in front of them. I am losing so much; I am losing my life. I am not ready to die. There is so much I want to do.

My words strung together from thoughts in my head matter to me. Maybe I shouldn’t care so much that my loved ones hear them. But I do. They are my words expressing how I feel. Sometimes I just need validation they care. 

Somehow, I thought my loved ones would want to hear my pain and offer me soft words when I needed it. I was wrong about that.

We are all islands living among each other and not really stopping to listen to what the other needs to say. I too am guilty of forgetting to listen, but am trying to correct this mistake whenever I can. I think we all want to be heard and want our feelings to be important. 

So it is to my two now grown daughters, to a few friends who have let me know they read my blog, to those people I have never and will never meet, and maybe one day to all of my family members that I want to say thank you for giving me some of your time. Thank you for reading my blog and for listening. I do need to be heard by someone, anyone.

You are it.

Cancer It's Me -- a poem

Before I get to my poem, here are a few things that have been happening to me recently.

If you glance to the right of this page you will see my recent award. Posts for me don't always flow easily from my brain to my fingertips so to be noticed for my blog is quite uplifting. I don't just tap the keys of my computer and viola! a post appears. No, sometimes it takes days. Thank you, Healthline!

This month has suddenly turned into a busy month. My daughter who resides in Cleveland, Ohio has completed her contracted work with Cleveland Play House. Two weeks ago, she called to tell me she had been offered a job in central New York. Again she will be working for a theater company, but this time she is moving into a position with more responsibilities, an increase in income, and she will no longer be an independent contractor but a full-time employee.

Today she is flying here to retrieve her things and together we will make the 13 hour drive to her new home. Exciting for her, exciting for me with a dose of sadness since if all goes well I may lose her forever to New York.

My recent treatment went well. Platelet blood counts are in the right parameters. What was unusual about this appointment was it occurred on a Sunday. The hospital has so many patients people can now be treated on Saturday or Sunday if they do not need to see a doctor. I took advantage of Sunday and was pleased to find how quickly I moved through the familiar routine.

Now for the poem . . .
I learned this morning it is National Poetry Month, and April 27th is Poem in Your Pocket Day. The poem below I wrote and shared in January of 2014, and thought I would share again for this day and month of poetry.

When I wrote it I was tormented mentally and physically by my disease. The drugs I was treated with made day to day living difficult at times. Taxotere, Perjeta, and Herceptin have unfriendly side-effects. Today, the anguish I felt in 2014 has been lifted significantly with my continued positive response from TDM-1 and radiation. That anguish comes alive at times, but nothing like it did then-- thankfully.

Cancer It's Me

Cancer . . . it’s me.

Come later
when my life
is more complete.

Let me see wrinkles
so deep
and skin
so thin
from elasticity gone.

I beg you,
stop
the lassitude,
the pain.

Cancer . . . it’s me.

Let me see
my children grow
to be adults,
to be on their own,
that’s all I want.

Death too soon
is death unfair.
It takes from me
and from them,
too.

Memories missing,
pages empty,
lost to me,
by your bombardment,
hard to bear.

Cancer . . . it’s me.

Stop this game you play,
out-smarting, outwitting, out maneuvering
us all.

Unfurl your madness
unfurl your mystery
so others will know
and early steps into the darkness
will cease
because your dress
will finally look different
than other dancers
and my body
will see you
and take back what is mine.

Cancer . . .  it’s me.

Scans show your control,
reveal your destruction.
 

Each day
you grow.
 

Each day
I slow.

Stop hurting.
Stop growing.
Stop taking.
Stop stealing
my time.

Rationalization of death
does not exist.
No lessons learned.
Tragedy defines
my one day forgotten life!

Cancer . . . it’s me.

Early May Not Be Early Enough For Some of US

Anne Weston/Wellcome Images-- Cancer Cell

After I was diagnosed with stage one breast cancer in 2009, I harbored some negative feelings toward my surgical oncologist. That wasn’t always the case though. The care she gave me surrounding my stage zero diagnosis in 2005 was wonderful. From the phone call telling me my biopsy was positive for non-invasive cancer to my care following my bi-lateral mastectomy was spectacular. I appreciated her prompt, swift action. I also liked her personally. When I fully recovered, I was left with such hope I would never have to deal with breast cancer again. After I was hit with the second diagnosis I couldn’t stop myself from looking for reasons why my cancer recurred. She was an easy target.

I had seen her a few months before I found my tiny, painful lump signaling my cancer’s recurrence. I remember how upset I was that her trained hands did not find it first. The now five millimeter lump was growing on my chest a few inches below my right clavicle. How did she miss it?

After treatment for this second recurrence ended in December of 2010, life returned to normal, again. I had not seen my surgical oncologist since she surgically removed some extra tissue, to be sure she got it all, after scooping my tiny tumor from my chest right there in her office--as I said, she was swift. Now, since chemotherapy had become a part of my life, someone else was directing my treatment--a general oncologist. My third anniversary from diagnosis was about to be reached. At the time, I was excited about reaching that milestone. For people like me with Her2neu disease, if it is going to recur, I was told, it usually does so in the first 3 years. As time moved along, I was released from seeing my general oncologist every six months to waiting an entire year. Life was good! And, then, there it was. A tiny enlarged lymph node at the front of my neck marking round three of disease and the final chapter of my life telling me I had never been cancer free at all.

When the never-ending treatments for my disease became reality, I couldn’t stop myself from going through the “what if” scenarios. What if the margins between good tissue and cancerous tissue had been bigger after my first surgery? A few millimeters apart just didn’t seem large enough. Since I did not have radiation after my mastectomy because it was only offered to lumpectomy patients, my mind kept circling back to the question: could that have stopped the progression? And, what about those dormant cells that no one has control over. Maybe those cells never awakened therefore making the infusions useless. Maybe if I had been treated for a longer time period that would have made the difference.

There are simply too many variables and no way to ever know if anything could have been done differently to stop me from becoming stage four. It is all a guessing game based on statistics gathered through clinical trials. Contemplating all the “what if’s” and my participation in the “blame game” felt justified. I thought I had been wronged. Ductal Carcinoma In-Situ wasn’t supposed to become metastatic yet that is exactly what had happened.  My mental battlefield kept telling me, well if only this had happened, I would be okay. It was absolutely pointless.

Today, the more I research and read, the more I learn. Because of that, any anger I held toward my surgeon or any of my doctors has softened over time. In those readings I have found a few studies giving researchers reason to suspect that some breast cancers, especially the her2neu type like mine, are metastatic long before a lump or other physical abnormality of the breast can be found either by the patient or a detection device. Metastasis may even begin at the initial onset of disease.

Here is a recent article about early metastasis: here by Sharon Begley @sxbegle, December 14, 2016, entitled Cancer cells spread way earlier than thought, seeding metastases that cause most deaths.

This is an excerpt:

“Earlier research had hinted that some cancer cells set out for distant organs long before a tumor is detectable. A 2008 mouse study, here led by Christoph Klein of Germany’s University of Regensburg, who also led one of the new studies here found that cancer cells reached the bone marrow months before breast tumors formed.  A 2011 study of 30 women with “non-invasive” breast cancer found that eight actually had cancer cells in the bone marrow. In about 8 percent of non-invasive breast cancers, a 2015 study  here reported, metastases develop — even though “non-invasive” means the malignant cells can’t enter the bloodstream and travel to vital organs." . .
. . . "The new studies were done in lab mice. The study at Regensburg found that in mice given the human breast cancer gene HER2, the hormone progesterone triggers the migration of cancer cells almost as soon as they form — that is, before a tumor is detectable. And these early émigrés are better at forming metastases than cancer cells that depart the tumor later.
At Mount Sinai, Aguirre-Ghiso found that a gene called p38 acts as a brake on the departure of cancer cells from still-forming breast tumors. When p38 is silenced and HER2 is activated, the combination awakens molecules that, eventually, mobilize cancer cells into the bloodstream and on to the lungs and bones.”

Frightening, isn't it?

With this new information any anger still quietly lingering within me vanished. If this proves to be true, all of the therapies I have undergone from the beginning never could have been enough to stop the one mutated cell (or cells) floating in my lymphatic system or blood stream while waiting to lay claim on a distant organ. It wasn't enough to stop those cells that had left my breast years before there was any indication of disease. Catching my disease at stage 0 seems early, doesn't it? But, for some of us, early may not be early enough.

For further reading see links below:
http://www.nature.com/nature/journal/v540/n7634/full/nature20609.html
https://community.breastcancer.org/forum/8/topics/720617
http://www.cell.com/cancer-cell/abstract/S1535-6108(07)00372-8

My Celebration Continues

Yesterday, at my normal three week infusion appointment of TDM-1 (treatment #63 overall, #46 of TDM-1) I received my printed report of my February 20th CAT scan.

I keep looking at the words finding them simply unbelievable.

On April 1st it will be four (4) years since I was told there was evidence by a scan that my cancer had moved beyond my breast into my mediastinal (between the lungs) lymph nodes. A few weeks later I learned it was in both of my lungs as well.

Those words above are both frightening and freeing. Frightening because of the everyday fear they will disappear. Freeing because my perceived time-shackles have been loosened. I absolutely did not think I would see my only son turn 21 which he did on March 11th. Nor, did I think I would see my youngest daughter turn 14. Her birthday is April 6th; I am looking forward to celebrating that day with her.

Like I said, it is simply UNBELIEVABLE!

Health Update

Yesterday was scan day. Around 2:00 my oncologist's PA walked in wearing a smile on her face which could only mean one thing: my scan results were spectacular! I am still celebrating today.

My platelet count was 88,000 adding to my joy.

Yep, a great day for me, and the shortest post I think I have ever written for you.

Wahoooo!

Another Happy Birthday!

November is one of my favorite months. Why? Because . . . it’s my birthday month! On the 19th, I turned 52 years old!

Some people have anxiety about turning 50 and beyond. Yes, I hate the bagging skin that time has been supplying me generously with, but birthdays bring joy to me not depression.

I love getting older. The fact I am having another birthday makes all the nausea, intestinal issues, lymphodema struggles, surgeries, radiation, UTI's, and my numerous infusions worth it. Five months from now I will have lived with the knowledge of my metastatic disease for four years. In the beginning, I thought I would be dead within a year, but here I am. If I am lucky enough, celebrating my 53rd will be even more awesome.

The weekend before my birthday, my youngest daughter and I traveled with my in-laws to Beech Mountain, NC where my husband’s sister, Becky, lives. Thankfully the weather was beautiful as we moved away from our familiar flat-lands to the winding mountain road leading to her home.

Her new home is beautiful. Every home Becky has ever lived in could have been on the cover of the Better Homes and Gardens magazine. This one is no different.

Recently, she and her husband expanded their living area adding an enormous garage, master suite, and guest bedroom. They will be living in comfort for years to come.

It was evident that Becky had been hard at work not only on her home but in the kitchen. There was a red velvet birthday cake waiting for us. I say “us” because my mother-in-law’s birthday is in November too. She’s74!

In other news . . .
Thanksgiving is almost here. As is tradition, my husband’s family gathers together at his parent’s home. People bring food of all kinds. Since there are so many good cooks on my husband’s mom’s side of the family, there has never been a need for me to cook anything. Instead my contribution involves boiling some water, steeping some tea bags, pouring it into a pitcher, adding some sugar, and I'm done--hmm, sweet iced tea. I like it that way; cooking is not how I like spending my time.

This year Thanksgiving is going to be different for me. I am going to be spending time with relatives on my father's side.

This change from my usual plan began one afternoon a few weeks ago when my sister telephoned.  She had some news to share about our father's sister. We both knew our aunt has been going through some difficult times. Her health has been troubling, and in July her life changed dramatically just as she was turning 80. Her husband--my uncle--died. He didn’t live long enough to see his birthday which was the day before hers. The conversation began with my sister telling me of her plans to visit our aunt and asked, "Is there any way you can join me?"

My immediate thought was there is no way.

Then one evening, my sister-in-law and I were chatting on the telephone about all the different happenings in our lives. I began telling her about what my sister was planning to do and her hope that I could meet her in Louisiana. She listened as I explained the cost comparison I had done between renting a car and flying. The best price I had found so far was for me to fly there on Thanksgiving Day at a ridiculously early hour and fly back on Saturday at another ridiculously early hour in the morning. I was struggling with whether I should just hold my breath and go and hope I don't regret it later or to not go and possibly regret that too. At that point she made an unexpected gesture. One I will never forget.


She said, “Hey, let me pay for your plane ticket.”

“No, you don’t have to do that.”

“But I want to.”

“Oh, my god! Really?” I said.

I was going to Louisiana. My cousins and their families will be there. And, my aunt will be smiling. Thank you, Becky!

My best friends from high school. (I am on the right.)

My life is far different than I thought it would be 3 ½ years ago. I have spent time with people I haven’t seen in years and now I am going to see family members that I haven’t seen since 2009 or longer. I am a little apprehensive about the plane ride, but so looking forward to a different Thanksgiving this year.

A few members of my high school graduating class.

My October Surprise

Yesterday, after a night filled with anxiety not offering much sleep, I pulled myself out of bed, got ready, and headed for Chapel Hill. For reasons no one I asked at the hospital could explain, all of my appointments flew by with only a minimum amount of waiting, so unusual.

After my CT scan -- yes it was THAT kind of day -- I couldn't stop my tears. All my fears were surfacing. All I could think about was: there is no way my scan could be good; my luck surely was coming to an end.

Well . . .

As unbelievable as it may seem to me, my scan was clean. Nothing new to see!

As I type this, I still can't believe it. For another four months I can put that monster into its closet and hope it suffocates. I am free today to live my life. Today, I am one happy cancer patient!

 

Oligometastatic Disease--A Chance to Live Longer

For a little over three years, I have lived knowing my existence is threatened by metastatic cancer. From the beginning I wanted nothing more than to live long enough to see each of my children become independent of me. I still want that. But, now there is an added dimension.

For an unknowable amount of time a thought has been entering my mind then fading as fast as it came. Recently, I noticed it lingering. Even more recently, it has decided not to leave at all. Why I noticed its presence, I am not sure. What I am sure about is it is not going away. I want to live for my children, no doubt about it. Additionally, I want to live for me, too!

I enjoy living. Not just living, but being an active participant in it. Of feeling the warmth on my skin from a summer sun, sensing the cool air gliding across my face as the temperature drops before a storm, witnessing flowers change a dull landscape to a beautiful one, engaging in thought-provoking conversations, revisiting experiences of yesterdays, dreaming of tomorrows, having my pets soak-up my blues and restoring some happiness within me, and experiencing the stories of others providing me the human connection that I cannot and do not want to live without.

My brain is on high alert right now about my wanting to live because my scan day is approaching. The date, time and machine locked in place just for me. This Monday I will pull myself out of bed, reluctantly. The firing squad will have their weapons pointing at me. Will the firing of their bullets begin?

As my days drift closer to this next scan, I replay the conversation I had with my radiation oncologist. His words held promise of a longer future for me. Now I live each day hopeful of many tomorrows. I am also cautious—fearful too--that he spoke too optimistically too soon. This is a wicked balancing act for me. Do I lean heavily on the hopeful side or lean more into the hopeless side, so if I fall the fall will hurt less. 

That day in October when hope became real, Dr. Z (my human life-preserver) used the term oligometastatic disease—a term I had read but had never heard spoken. Though I couldn’t find a lot of free information about it on the internet, I did find this--Oligometastatic disease is defined as:  

low-volume metastatic disease with limited number and size of metastatic lesions (up to 5, and not necessarily in the same organ), potentially amenable to local treatment, with the aim of achieving complete remission. Definition from Medscape article by Linda Brookes, MSc, April 28, 2016, Mastectomies: Local Approaches to Breast Cancer. www.medscape.com

From this same article Dr. E. Senkus-Konefka, MD (Medical University of Gadansk, Poland) at the 2016 European Breast Cancer conference said this: Oligometastatic disease is an intermediate biological state between localized and widely metastatic disease. Evidence suggests that OMBC is biologically distinct from polymetastatic disease.

With present day radiation methods, better drugs and surgery for certain candidates, it does seem possible that my situation is leaning in the direction of hopeful instead of hopeless. My fingers are crossed.

For those of you not familiar with oligometastatic (OMBC) disease or are new to learning about metastatic breast cancer, I will attempt to explain why oligometastatic disease could have a better outcome than widespread disease--at least in the way I understand it: Dr. Elaine Schattner wrote in a Forbes article--here--It takes about a billion cells for a tumor to reach the size of one centimeter, less than half an inch, in diameter.--a billion cells, imagine that for a moment. Though some may no longer be alive deep within the tumor, killing even a million cells individually is daunting, wouldn’t you agree? Each time a group of cells breaks-off and travels to a new site forming another tumor with billions and billions of cells means less of a chance of controlling or eliminating them.

In those billions of cancerous cells, many will look similar to each other, but others will not. The longer the cancer cells continue to survive, the more different they can become. For example, my cancer tested positive for the Her2neu receptor on the cancerous cells’ surfaces. That means the generations of cells before they became cancerous had the right amount of receptors to behave normally. Then something went wrong resulting in too many receptors receiving an onslaught of messages causing the cells to behave abnormally. The tissue taken from a lymph node in the middle of my chest for biopsy tested the same as my primary cancer—Her2neu+. Samples from the nodules in my lungs and all other affected lymph nodes were not taken for biopsy so really it was and is a hopeful endeavor that they have/had the same mutation. Since all but one disappeared it is likely that most of the cells resembled my primary tumor—at least enough to respond to treatment. The one nodule in my right lung that was recently radiated did not respond to therapy like the others. It stayed the same size for a long time, almost as if it wasn’t an active tumor. Some cells were killed and some grew until the growing ones outnumbered the ones responding to treatment. Those unresponsive cells to TDM-1 could have been negative for the Her2neu receptors, found a new pathway of proteins to use to get messages to the nucleus or could have been positive for the estrogen receptor fueling its growth—no way to know for sure. I say “could have been” hoping they have all been destroyed by Cyber Knife delivered radiation.

As I went through my stage 1 treatment and during the 3 years before I knew I had metastatic disease, I often inquired about scans for recurrent disease. My goal was to catch it early. I didn’t know then that doctors aren’t interested--at least don’t seem to be--in catching advanced disease in its earliest state. The ongoing belief seems to be once you pass into stage IV land, it is too late.

After chemotherapy and radiation ended, I was allowed two PET scans. Since I was a breast cancer repeater—stage 0 then stage 1--I assume it was approved by insurance to make sure I wasn't already stage IV. Once those scans were clear, my former oncologist saw no reason to undergo any more diagnostic tests. Is this because stage IV has such a bleak outcome so why bother? Is it because he knew my insurance company would not pay for additional testing? With my new knowledge--albeit limited and from a patient's perspective--of oligometastatic disease, I think my desire to catch this disease early before the tumor load was impossible to manage was reasonable. Catching advanced disease earlier and treating aggressively may give some patients long-term control and dare I say the possibility of a cure. I think having scans at year 3 and year 5 after early-stage disease should be considered. Maybe waiting for symptoms to occur will stop being the standard of care after early-stage disease.

The information I found about oligometastatic disease never indicated if remission was only attainable at initial diagnosis or if it could be attained after treatment reducing the disease to this state. The latter is the category in which I fall. I asked Dr. Z about this since my disease didn’t start out that way--my tumors were small but more than 5 were seen on a scan. He didn’t miss a beat as he continued filling the room with his energy and optimism of the success that radiation of this nodule could bring making me feel he was waving a golden ticket in front of me. All I had to do was grab it. But, I was afraid because if I grabbed it, it might be ripped from my hands. 

Three weeks later a Physician’s Assistant said when looking at my last scan, “Well, we know it is still there. We just can’t see it.” making my golden ticket appear farther away making it harder to grab, slapping me back to the reality of the hopelessness of my disease. Love her, but grrrrrrrr . . .

I want to pretend none of this has happened to me, but my brain is never quiet. I know too much about this disease. My anxiety increases as the winds of time keep pushing me to that great white machine again asking me to breathe in, breathe out.


What if . . .

What if it isn’t there any longer?

I want to believe in this possibility for me.

I Don't Want To Regret

Audrey, Reese, Garrett, Morgan 2005--the year I was diagnosed stage 0.

Warning as of March 21: Below is a post I wrote a few days ago to express some emotions that I was feeling about the process of dying. Anyone who reads about cancer or disease in general understands what it does to a living being. It can be horrific.
A few people have said after reading this post that they are concerned about me, mentally. Please do not be. I was simply writing about feeling sad knowing my children will have to go through pain at the end of their lives. This is clearer to me now as I confront my own mortality. I love my children. They give my life meaning. If we all could "go gentle into that good night" (not what Dylan Thomas wrote--just the opposite) by dying in our sleep then the issue in this post would not have caused me to think about it. So with that said I hope this is not another issue in our society that people would rather sweep under the carpet or put their fingers in their ears and pretend these thoughts don't exist--maybe not for all, but surely I am not alone.
My life as a parent has always been to protect my children from pain. Unfortunately, I cannot protect them against the pain caused by dying. Until recently, I had not thought of birth as a terminal condition--but it is.
If you continue reading, please read with caution and know that I am fine and so is my family.


*******************************************************************************
 I Don't Want to Regret

I don’t want to regret giving life to my children, but lately my thoughts drift there.

They will die. Most likely there will be pain. Pain will come from leaving life’s pleasures or pain from the body dying, probably both.

How do I not feel sad about that? I don’t want to cause them pain.

I lost my mother to death before my children came into being. My father died 51 days before my first born daughters breathed for the first time. With my parents’ deaths fresh in memory as I became a parent, I thought about death--my children’s, Greg's and mine.

Back then death was to be avoided not something we had to go through--anytime soon at least. I was too busy living and loving life to give too much of my time to thinking about the end—the actual end--my children would experience eventually.

In every selfish wonderful minute I have spent with my children not once did I think I might one day regret bringing them into existence, but now . . .

I fear I will regret.

Not their life, not my or their enjoyment of it, but that their lives were started in the first place.

I don’t want to regret—
But if they never existed, they would never have to die.