Monday, February 19, 2018

Survivor




Carefully placed 
under tissue paper I found 
nestled between
colorful cottony socks 
in a pouch of shimmering silver, 
were three golden ribbons 
like crossed fingers of hope, 
a pair of earrings 
and a small charm--
that medal of honor
tiny beading attached 
linked one after the other. 
One word repetitiously 
encircling the third, 
survivor, survivor, survivor, survivor 
it read. 
Meant to bring joy
by the sender to me-- 
an early stage cancer patient 
treatment now ended 
deemed cancer free. 
Do I tell her I’m not 
nor never will be 
the survivor she is 
with cancer behind her
instead of in front? 
How once I too thought 
when the treatments were done 
I was a survivor 
and would gladly have worn 
that delicate necklace 
of silver and gold 
with that word and the hearts 
the meaning so true, 
at the time. 
Or do I say thank you 
and nothing more, 
letting her think
survivor, 
a word we both share? 
With cancer behind, inside and ahead, 
my eightieth infusion 
just hours away, 
survivor, survivor, survivor, survivor, 
with the four little hearts 
that golden ribbon of hope 
will remain tucked inside 
that silvery pouch 
my silent reminder 
a word I can’t wear. 
Survivor I want to be; 
survivor I hope to be. 
Survivor,
survivor?
It's not supposed to be me. 

Thursday, February 1, 2018

Quick Update


Yep, it's true. My January 29th scan was beautiful! Still having trouble believing it.

Next scan will be 6 months from now--simply wonderful.

Wednesday, January 10, 2018

Coping with Cancer in our Modern World

Can you imagine—in a not-so-distant past—how difficult it must have been to be diagnosed with a deadly illness and having no access to others who were experiencing a similar health condition? For an unfortunate number of people this reality still exists, but for many, the internet has changed everything.

I sometimes think how afraid and isolated my great grandmother must have felt as colon cancer took her life, or how frightening it was for my grandmother to have only her doctor’s experience and knowledge of her condition to guide her during her treatment for uterine cancer. I wonder how alone my mother must have felt or how maddening it must have been to not have information easily obtained about her diagnosis and treatment for ovarian cancer in the 70’s. It must have been hard for my dad to cope with lung cancer in the early 90’s having no one to talk to who was experiencing the same horrible disease that killed him. Without access to social media to educate, guide and comfort me, I am certain my experience with cancer would be far different and far more challenging.

Today people can connect with others all over the world experiencing similar health situations. It helps people find someone of which to share a “me too” moment. On-line support groups give members the ability to ask questions about side effects from treatments or find help in making treatment decisions. People can vent easily about their insurance plans being inadequate, or share that a pharmaceutical company has agreed to help them with the costs associated with their life-saving drug(s). Questions about pathology or scan reports that have unfamiliar medical terms can be easily understood by finding someone who can clarify the meaning or by simply typing the word into a web browser. How wonderful it is to read about the newest research, clinical trials and new drug information shared by a Facebook group member or by someone you follow on Twitter. There is a freedom and emotional release in being able to blog about the resentment and frustration you might have about an oncologist that does not want to order an MRI to look for brain metastases because you have no symptoms and saying if something was found it would complicate your current treatment plan. (It is as if she said, “If there are any mets to your brain, we will just let them grow willy-nilly. Why worry until we have to—ugh.)

Also, you never know what you might find simply lurking and learning from reading the posts and comments of others. Sometimes I participate in discussions, other times I lurk. On one particular lurking day I came across a discussion on Inspire 's Advanced Breast Cancer Group. An active member, Best Bird, wrote about Cyberknife and lung metastases giving me a treatment to consider if my lung mets ever grew. Well, my remaining one did. My asking if the progressing nodule could be zapped by Cyberknife completely changed my life, presently NED--no evidence of disease. My oncologist had not given any thought to radiating that nodule. If not for the happenstance of my reading Best Bird’s words, I would have never known about it. I would have moved on to the next standard course of treatment, and who knows if I would be alive today--thanks Best Bird!.

Recently an article from Healthline called The 2017 The State of Cancer Report: The Impact of Digital Information and Patient Support Networks by Ann Pietrangelo and Whitney Akers came to my attention. It reported the results of their survey of 1500 people. The participants were either living with cancers (not just breast), considered a survivor or were caregivers. The questions were designed to determine each individual’s engagement in social media and the reasons for their use of it.The participants were grouped generationally to see if age was a factor in social media activity. Among those surveyed there were 500 Milennials also called Generation Y (approx. ages 18-36), 500 Gen Xers (ages 37 to 52), and 500 Baby Boomers (ages 53-71). The article provides percentages of the number of participants who used social media to make decisions about their doctors, treatments, hospitals and if the internet was used to find information about new drugs, therapies, and clinical trials. Using social media for emotional support was also evaluated. It includes statistics on which generational group was most active. In my own search to find people my age (53) with the same condition (Her2 neu breast cancer), I found out quickly my generation, Baby Boomer, isn’t quite as involved as Millenials. The possible reasons for this are mentioned in the article. It is a lengthy read, but if you can get to the end, you will probably see your reasons for using the internet described within it. Be prepared though to feel a bit left out of the conversation if you are stage IV like me. The article focuses on people during and after cancer. There is no after cancer with stage IV.

I think the most important trend that has developed over recent years in healthcare is the practice of a more patient-centered approach to care allowing patients to be part of the decision making process. The article points out that 62% of Boomers and Gen xers who participated in the survey prefer shared decision-making about their treatments. I think this change is a win for patients everywhere.

Please visit my new page on the bar above to find some social networks that might be able to help you during a time of need.


*Note: Please check with your doctor about any advice offered about treatments in these social groups. I do not want you to take supplements that may impair how your conventional therapy works or encourages you to waste your money on a hope for a cure that has not been proven to affect your specific type of cancer.

Friday, January 5, 2018

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.

Friday, December 8, 2017

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. 

Sunday, November 26, 2017

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.

Sunday, October 8, 2017

Grateful

Breast Cancer Awareness month leaves many people in the breast cancer community feeling sad and angry. They want more research dollars dedicated to the understanding of and drug development for stage IV disease. They want this group of people to not be alienated during all the early-stage hoopla that makes up the month of October. I want that too. Their anger is justified. People are dying.

While there is a place for anger about research and where the money goes during this month--or any other month--there is also a place for happiness. I see it on social media almost daily. People with late-stage disease are running 5-K's, traveling, spending time with family and friends, returning to work and living longer with a better quality of life than they--or me--ever thought possible all because of research.  I am one of the approximately 15 to 20% with advanced stage disease that will live five years--my first treatment at this stage was 4 years and 5 months ago. I feel like we must not forget to acknowledge that research is helping people every day. I am extremely grateful to every researcher, advocate, educator, clinical trial participant, doctor, nurse and anyone who donates or is involved in fundraising of any kind--every single dollar counts. If not for those people, I would not be able to do this.




My situation can change at any time, and I don't always feel as good as I did on this day, but I am grateful for every single day.