The Results Are In!

Scan Day also became infusion day #34 of TDM-1!

What a relief to see a smiling face come through the door to tell me my scan looked great. I believed I startled Ms. P (PA) when I embraced her maybe a little too enthusiastically--I was joyful and couldn't contain it. 
 
My next scan will be in October. In the meantime I will travel to Kentucky to see my sisters, visit Cleveland, Ohio where my daughter will be working and watch my other daughter leave (again) for Japan where she will work over the next year. I am looking forward to a busy summer.     

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.

Cancer Research Month Ends

I have been at the hospital today getting my every-three-week infusion. Platelets were at 96,000! Highest they have been in awhile. June brings my scan. The nail biting has begun.

After sitting down for infusion #50 and #33 of TDM-1, I found this tweet on this final day of National Cancer Research Month. #ItsAboutTimeMBC #metastaticbc

#ItsAboutTimeMBC ‏@itsabouttimembc 2h2 hours ago

Lisa: Only honest convos about the nature of cancer will move $ to research: http://bit.ly/25cubrT

Yes, that is me.

I soon wondered how long the month of May has been the month where advocates for more research for all cancers get a better chance of being heard. A few moments later I found what I was looking for. The Alaska Senator, Lisa Murkowski, spoke the words below back in 2008 acknowledging the first year this month was recognized as Cancer Research Month in the United States.

"We're all touched by cancer as evidenced by the more than 10 million cancer survivors living in the US. Cancer research plays an important role in saving lives and advancing progress against the more than 200 diseases that we call cancer. In 2008 Congress became united in a bipartisan show of support to recognize the month of May as National Cancer Month." Find this speech--Here

My words included in the It's About Time MBC tweet are few, but the message behind them is complex. Metastatic breast cancer is deemed incurable. The longer the cancer is uncontrolled, the more complex it becomes in its survival. There are not enough drugs to target each mutation. It is crucial that research is directed toward treatments for people like me, those now and in the future. Prevention, early detection, healthy living, and awareness are good but will do nothing to make metastatic breast cancer a disease that does not equal death within the estimated 3 year--maybe 5 year--life expectancy after a stage IV diagnosis. Only cellular research can do that--so extremely expensive and so very time intensive. Awareness about metastatic disease hopefully will spur more research dollars in this area.

Read this article for a better understanding of why cancer is so hard to cure and why the hype of doing so leads to disappointment.  

May is filled with many awareness campaigns. The list below comes from the American Cancer Society's Website.
An * means the campaign is sponsored by the American Cancer Society.
May appears to be the busiest month for awareness campaigns.

May 2016

Bladder Cancer Awareness Month

Brain Tumor Awareness Month

Cancer Research Month

Don’t Fry Day (May 27)*

Melanoma Monday (May 2)

National Women’s Check-up Day (May 9)

National Women's Health Week (May 8−14)

National Skin Cancer Detection and Prevention Month

World No Tobacco Day (May 31)

World Health Assembly (May 16−21; Geneva)

I hope all of these campaigns are causing dollars to be allocated to the best research possible. Too often it seems much research is spent on prevention and lifestyle choices. While good and necessary, sometimes I feel like that type of research keeps going down the same path and ending up with the same results: correlation does not always equal causation--especially in the breast cancer world of which I am familiar.


May has been a busy month for me with my twins graduating from college and sending one off to spend the summer in Japan. Exhausting but exciting too.

“Death Always Wins”

When Breath Becomes Air
--a book written by Dr. Paul Kalanithi.       

I noticed on Twitter a few months ago the promotion of a small, white-colored jacketed book with 228 pages inside called When Breath Becomes Air. The writer was Dr. Paul Kalanithi, a man in his thirties completing his last year of neurosurgical residency at Stanford University. One tweet in particular from Esperity.com had me reacting by clicking a link of an interview with the writer’s wife, Lucy, further growing my interest in the book.

"Being a #caregiver is hard & no one can do it perfectly!" Read @rocketgirlmd interview on experiences as #caregiver https://t.co/oFtmPERAaC

— Esperity (@Esperity) March 5, 2016

A few days later while flipping through a monthly book review magazine that my local library carries, an article about it paused my skimming. Throughout that day and the following, my mind kept returning to the thought I had at that moment: I want that book. 

I went into Books-a-Million in search of it several days later soon eyeing it after I entered the store. Picking it up, I nestled it against my chest afraid of dropping it, soiling its pristine cover. Holding it there gave me a kind of comfort because the story inside held a shared story, mine connected to his. Two different stories of two different people, but with the same shortened futures from a deadly disease.

Finally the busyness of my life lessened allowing me time to read it. Within each page, I discovered the book is more than a story about a person dying of cancer. It’s a story of a person’s search for life’s meaning, of what he does and the places he finds himself in pursuit of it.

From Dr. Kalanithi's love of literature grew his questions and thoughts concerning the meaning of life. This intellectual adventure eventually pointed him toward the study of the brain since our brain allows for such questions to be asked in the first place. Though he never wanted to be involved in any medical field he began his move in that direction upon his realization that “the intersection of life, death and meaning are usually in the context of a medical situation.”  He states, “Neurosurgery attracted me as much for its intertwining of brain and consciousness as for intertwining life and death.” It is there he thought he would find meaning.

What brought me into his world was his cancer diagnosis. I left his world in awe of him and people like him who choose to work so intimately with death. The challenges he experienced as a neurosurgical resident were terrifyingly captivating. His meetings at the crossroads of life and death were further complicated he explains by the issues of morality. Who should make those decisions of when to treat and when to do nothing: the doctor, the patient, the family? Many of those decisions about a person’s life and their death fell to him whereupon he would ask, “. . . what made that particular patient’s life worth living” and then “planning to save those things if possible--or to allow the peace of death if not.” The thoughts and decisions he shared caused me to gain a new perspective of the role of a doctor. He writes, "As a resident I wasn’t about saving lives but about guiding patients and families to death.” Don't all doctors in fact do just that?

Dr. Kalanithi never expected to become intimately familiar with death so early in his life especially with the disease of lung cancer. He states, “0.0012% of 36 year olds get lung cancer.” That is the thing about statistics. Even though that number indicated it is a rarity, it can still happen; no one is safe. Just like early-stage breast cancer becoming late-stage disease: 70% may be cured, but there is still the other 30%.

After being told the doctor would see him soon he succinctly says, “And with that the future I had imagined, the one just about to be realized . . . evaporated.”

That one word . . .evaporated . . .

A perfect description of my own future.

Because of his illness, more of what he might have shared with us is lost. His exploration of life’s meaning is not neatly packaged in a conclusive Part III, but instead found between the first page to the last. I believe he believed that everyone’s meaning changes from day to day--even for the terminally ill. I easily agree. One particular day I can relax and enjoy a moment because I think I have enough time to do so. Other days, I am back to working on my end-of-life-to-do-list because the pressure of time pushes me as my brain remembers what if I don’t have enough time?

Perhaps his most poignant point about the meaning of life is how it is shaped by others. Again, I easily agree. He writes, “I think--that humans find meaning and discover what is of value to them through the relationships we form with other people. Our relationships can and do provide meaning in our lives; they help to define our moral guidelines about life and death; they direct us toward the things we value.”

In his story, he conveys to us how his relationship with his wife gives his life meaning. Within those 22 months after his diagnosis, he experienced contentment in their relationship which eclipsed with a new life brought into the world, their daughter, Cady. He says, “If human relationality formed the bedrock of meaning it seemed to us that rearing children added another dimension to that meaning“. 

On page 198, I find his most moving words, the ones I had read previously when I was introduced to his book. Those words in his last paragraph are not words I simply read, they are words I felt, each one of them. He writes to his daughter:

“There is perhaps only one thing to say to this infant, who is all future, overlapping briefly with me . . . When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray discount that you filled a dying man’s days with sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.”

And, with that Dr. Paul Kalanithi is immortalized through his child's genes and through his writing. As he said his “words have a longevity” that he did not. The written word enables each of us—him, me, you--to extend ourselves beyond our short existence bringing all of us together. No other being on earth can do that.

Because “death always wins” his wife writes the final part in the epilogue. Her words tell us the story after his breath became air. It will leave you saddened that this brilliant man’s future never happened. You will not easily forget the words written by these two people trying to live life in the best way they could. At its end, you will close the book with much to think about perhaps leading you to start planning for your own death just in case your time-line is shorter than you expected.

Spring Break -- from cancer, Take 2

It is that time of year when the annual Azalea Festival celebrates the beauty of Wilmington North Carolina’s gardens, historic homes, and its history. In April of 2015, I shared my first experience at the Azalea Festival’s Garden Party in my post Spring Break—from cancer found here. For me to walk the grassy landscape of Airlie Gardens and admire all the beautiful colors of spring for a second time was not expected since cancer is always on my radar, so I felt excitement to be there. If not for Greg’s employer being one of the many sponsors of this event and my current drug keeping my disease under control, I would not have been able to feel the exhilaration that comes from putting my fears in another part of my brain and simply enjoying the beautiful day. 

Greg and I April 9, 2016

Though the weather was on the chilly side--for me anyway--the visual enjoyment I found from the tamed landscape providing a living backdrop for the party was tremendous. Again, the colorful, lively people decorating the lawn proved more enjoyable than the flowers that line the pathways.

A party like this leaves me with thoughts of sipping mint juleps, pinky finger daintily floating alone away from the cup handle. But, a glance at the tables under tents filled with bottles of varying types of alcohol and bartenders ready for action to fill small plastic cups with your drink of choice takes away such thoughts of sophistication leaving my pinky finger to serve as the security force behind me not dropping my drink--still it was no college fraternity party.  

The liquor started flowing at 10 am and stopped at 3 pm. Drinks were not the only item served that people could indulge themselves. Plenty of pork barbecue, coleslaw, large French-fried shaped cornbread, and green beans were available for everyone—it is a Southern event after all.

The Summerall Guards

The Summerall Guards from the Citadel Military College of South Carolina did their precision drill routine as was done last year. You can read more about them here.

With such a variety of colorful clothing gracing the green carpeted event I felt like I was shopping for next year’s dress and getting to see each item on a live model. For whatever reason, dresses with pink held my gaze. Pink: you would think I would hate that color.



Dresses, jackets, hats and even men in shorts were part of the scene once again. The biggest change to the garden party this year came from a group of men who took dressing for the event seriously with an added flair for fun.

Men who take fashion to a new level!

I spent more time this year getting to know Greg’s co-workers and enjoyed the company of a wife of one of them. She is an identical twin, I am a mother of identical twins, and I have identical twin sisters so of course that topic had to enter our conversation.  We also chatted about the job her sister gets paid to do. She types/typed up the transcripts of the interviews—word for word—for the television reality show Kate Plus 8 and the former show The Duggars’ 19 Kids and Counting. I admit I have watched these shows and even have an affinity for Kate because she doesn’t seem fake. Dealing with 8 kids would make me crazy, can you imagine? Dealing with 19, well that is a different kind of crazy all together. Of course a lot of what is said does not make it past the final cut. She is sworn to secrecy which is unfortunate cause if I am being honest—which I am—I would be entertained by such secrets.

At around 3 pm, Greg and I said goodbye to the group of people from his work. I wish I could have said, “See you next year,” without thinking . . .

Well, if you read this blog with any regularity then you know what I was thinking.
   

Greg and I April 9, 2016 Airlie Garden Party

Hopefully, I will be there next year.

Metsiversary

Today marks the 3rd anniversary of my knowledge that my cancer had metastasized. It was a Monday, April Fools’ Day, 2013. The irony lingers.

On that day I was driving my youngest daughter to her gymnastics class. I answered the buzz of my phone, and the few words my oncologist spoke set a course for my life I hoped would never happen. I was sad and scared. At the time I had no idea I would also become disappointed. The person I depended on to guide me; the person I relied on to answer my questions or concerns did not have the courage, or perhaps the time, to give me all the facts. Instead, the task to tell me I was stage IV and terminal was pushed to someone else--a person I didn’t know.

This person continues to be my oncologist today. I can only imagine what she was thinking when she realized I didn’t know the details of my diagnosis. She had been chosen to do the dirty work. The image in my mind of her looking down at my new patient form, reading the words I had written stating why I was there to see her that day still remains. She looked up, and I learned my hope for stage III was not to be.  

I have thought a few times about contacting him—my old oncologist--to let him know how I am doing, but then I remember our relationship wasn’t what I thought it was. I felt deserted by him then and now. At the same time, though, I am glad he sent me away. If I had not been reassigned to a new doctor at a new facility far away from home, I might not have no evidence of disease like I do now. (I would like to say completely-gone-disease, but words like those are not used—well, only rarely, very seldom, most often not, okay, usually never—to describe people with stage IV breast cancer.) My former oncologist did say he wanted me to have access to the newest and best treatments. He might not have been as willing to listen to my suggestion of Cyber-Knife radiation to zap the nodule in my right lung the way my present oncologist did in October. Not that he couldn't have sent me to Chapel Hill or Greenville where Cyber-Knife treatments happen every day, but would he have? So, really, sending me away has worked well for me—and him.

The view from my front porch--wisteria blooms.

What I thought was unwanted, this move to a new oncologist and new facility, I now appreciate. It has taken awhile for me to trust and even to like the oncologist that told me the horrific news three years ago. But, like the wild wisteria that grows along the roadways that lead to my house, what seems unwanted can bring big surprises. Weeds can become beautiful if nurtured in just the right way.

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.