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.

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. 

I Think I Need an Editor

I need to apologize to anyone who reads my blog. So here it is: I am sorry.

I am sorry because for some reason I thought when I began this blog in August of 2013 that in time my writing mistakes would lessen. That my struggle to write something free of little words sitting there adding no meaning to a sentence; free of words sitting in an order that seem randomly placed like they were shuffled somehow after leaving my brain causing the reader to ask, What? I don't get it, would stop. It hasn't.

How wrong I was that it would get easier. The mistakes in my last post are proof of that. How do mistakes stare at me but I not at them?

Maybe I should try the writing tricks my daughters suggested long ago: change the font; read each sentence starting at the end.

I am embarrassed that it happens. It is simply maddening and even humiliating because I try so hard to eliminate these easily fixed writing flaws leaving me cringing once I find them.

I won't take offense if you mention to me that you see something that needs my attention in any future posts. Matter-o-fact, I would appreciate it.

A Hashtag for Research

A new hashtag keeps meeting my eyes while I stumble around social media trying to keep up with the news in our world. The hashtag of which I am referring to is: #kissthis4mbc. I have been struggling with it. Struggling to figure out if this is a good idea or another feel-good marketing tactic. I wonder: will this actually help the metastatic breast cancer community?

On Facebook, Twitter and Instagram, the #kissthis4mbc social media campaign was launched to raise money for metastatic breast cancer research. Find information about it here and here .

That’s good, right? 

It began on September 15th, and is sponsored by one of the largest pharmaceutical companies in the world, Novartis. This Switzerland based company conducts cancer research, sells and manufactures many drugs including a few breast cancer drugs: Femera (letrozole) and Affinitor (everolimus) that helps estrogen positive patients in controlling their disease as well as Zometa (zoledronic acid) for strengthening bones when disease settles there.

The fundraising plan is simple. Novartis will give $10.00 for each selfie posted on social media with the hashtag, #kissthis4mbc @Novartis; you don’t have to have cancer to participate. The goal is to reach a minimum of $200,000. All monies raised will be given to two organizations that only fund metastatic research, METAvivor and the Metastatic Breast Cancer Network (MBCN).

Sounds nice, right? Yes! Yes, it does.

Except . . . when I first saw “kissthis4mbc” on my Twitter feed, my initial reaction was: this doesn’t speak to me. The telling of metastatic breast cancer to “kiss this” I thought was targeting the young selfie-picture taking people with puckered lips motivated by girl power. That is not me. I am 52 and more of a “#dontignorestageIV” kind of person. I thought of it as another silly chain type activity avoiding the seriousness of this condition by over-shadowing it with “bad assery”. In the world of stage IV, bad asses kicking butt and taking names signifies a “gonna beat this” attitude which crosses the line into the false realm that someone can stop cancer just by being a bad ass. When said with such certainty I get annoyed because the one thing people need to know about stage IV is that it kills. No amount of “bad assery” will ever be enough to stop stage IV breast cancer.

At this point in my thinking, I had decided not to participate. Especially since I felt this selfie-taking in the name of “kiss this” had returned us yet again to the trivialization of this disease making it seem easy to overcome. Puckering up for funds brings all the cuteness back into a very un-cute disease. Why can’t anger fuel the fire to donate? Why can’t sadness be the driver behind people wanting to save others? It can, but the reality is no one wants to see an emaciated body ravaged by cancer because it is horrifying. Seeing young, middle aged and older women with smiling faces are definitely nicer to look at. 

Additionally . . .

It wasn’t only the hashtag that was causing me to have problems with this campaign. I wanted to know why Novartis would want to donate $10 for every selfie posted with that hashtag on Facebook, Twitter and Instagram. Their fundraising goal of $200,000 is not anywhere close to the money needed for real advancement in metastatic disease. The real get out of the petri-dish and onto the final stages of a clinical trial proving efficacy can cost millions, even billions. I couldn’t rationalize in my mind why Novartis did not want to keep the money in-house for their own research. After all, from what I can find on their website, they are involved in many areas of cancer research including late stage breast cancers.

This hashtag campaign was looking like a feel good marketing plan done to spur a positive vibe for Novartis. Plus, the actor, producer, and now breast cancer activist Eva Longoria, the spokesperson for this campaign—who I had never heard of--would gain some good publicity for herself as well. 

Self-promotion isn’t a bad thing. Most people and corporations must do it to stay popular. But done for the sole purpose of "look at us, we are great" bothers me. Novartis is most certainly promoting themselves in a positive way, but they are also planning to give the money raised to METAvivor and the Metastatic Breast Cancer Network . These organizations are committed to metastatic research, so a contribution to them is always a good thing. But, I wondered if this is the best way for Novartis to spend its money. Metastatic research is enormously expensive. METAvivor and the Metastatic Breast Cancer Network are small organizations. They cannot give as much money to researchers the way that Novartis can give to their research teams. I questioned whether dividing up the $200,000 between these two entities really would make an impact in the stage 4 breast cancer world.  

All these questions swirling in my head brought me back to the year 2014 when I was in full-on research mode and wondering why advocates for stage IV disease were disgruntled by the Susan G. Komen organization. I learned the United States government’s National Institutes of Health and the Department of Defense’s cancer program gave enormous sums of money to researchers and laboratories in the millions of dollars. As I studied Komen’s website and the US government's involvement in cancer research the take away I gained from that investment of my time was Komen's main focus was on awareness, prevention and early stage detection while the US government handled the big extremely expensive stuff. I concluded that organizations like Komen and others provide help to small researchers and laboratories who are not able to secure those large dollar grants from the government. As these smaller laboratories do small-scale research, kept alive by these non-profits, they may eventually be able to compete and receive those enormous grants available through the government resulting in their research producing important knowledge that benefits the entire breast cancer community. Because of that despite my angst concerning breast cancer fundraising demanding that a fun-time-for-all must be had, and after the battle bots in my brain had returned to their corners, I began to change my thinking. I decided I could support the hashtag selfie-posting campaign.

I still dislike the hashtag. I do, however, want METAvivor and the Metastatic Breast Cancer Network to be able to grant a few more researchers money for their small projects. And, maybe one day the words “kiss this” said while a particular drug(s) chases the cancer in a patient’s body will destroy their cancer with the “bad assery” power of those two four-letter words and end this disease. 

Here is my selfie so funds from Novartis will go to METAvivor and the MBCN. Will you help too?

My tweet @LisaAdamsThomp4.

Count Me In!

I first learned of the Metastatic Breast Cancer Project in October of 2015. Last month I decided to complete their questionnaire to determine if I was eligible for their current study. Turns out, since my cancer has responded to a particular therapy for an extended period--at least I think this is why--I was accepted. The study is not intended to help me live longer, but to help those that follow me.

A year after its 2014 inception, the Metastatic Breast Cancer Project began collecting metastatic breast cancer patients’ DNA from across the United States of America. The project’s goal is to find understanding of the cellular complexities of metastatic breast cancer and to compile all the information gathered into one data base for all cancer researchers and the National Institutes of Health personnel to use in the understanding and in the advancement of treating this complex disease.

The Broad Institute of MIT and Harvard are funding and housing the research. Dana-Farber Cancer Institute and several advocacy groups are collaborating with this project. (Advocacy groups: MBC Alliance, MBCNetwork, Avon Association, LBBC Living Beyond BC, Young Survival Coalition, Inflammatory BC research Foundation, Share 40, the Male BC Coalition, Theresa’s Research Foundation, Triple Negative BC Foundation, IBC, A4BC, Metavivor, Metup, Tigerlilly foundation, Susan Komen, BCRF, Dr. Susan Love Research Foundation, BCSM, Hope Scarves)
 
The leader of this project are Nikhil Wagle, MD and the director is Corrie Painter, PhD.

If you are a metastatic breast cancer patient, you can go to the project’s website where you will be asked to fill out a questionnaire, MBC Project. From there—if you are eligible for the current study—you will be asked to give permission for the research team to collect your medical records and tumor samples—the DNA from those samples will be sequenced. Next a saliva kit will be sent to your home. You mail it back to them and the research team will capture the normal cells from this sample and conduct DNA sequencing on those cells. The researchers involved are hoping to discover specific DNA changes (mutations—alterations, deletions) and germline information (inherited) that are involved in metastases in hopes of leading to a better understanding of the disease variations so better treatments can be developed allowing for better control of this disease bringing longer lives to those affected.

Here is what you will find in your kit. The hardest part for me was producing the saliva which goes into a small tube and once closed mixes with a solution.

It took some effort but in 30 minutes my tube was shaken and packed into its box ready to be mailed.

The first set of patients to be studied are those presenting with de novo (stage IV at initial diagnosis) and extraordinary responders (those who have responded to a treatment for a longer than expected period of time—2 years + on one drug). Future studies will include young metastatic patients and those patients who do not respond to treatments (drug-resistant). 

If you have metastatic breast cancer and complete the first 16 questions about your cancer and the treatments you have received, you will get updates about the research as new information is found. And, if you are not eligible for the current studies, as the research expands you may be included in future studies.

Update:  My insurance denial has been overturned. Tomorrow I will receive my 57th infusion of TDM-1!

DENIED

When I was diagnosed with metastatic disease in 2013, my most significant worry was about progression of disease and the end of my life. Today, and over the last several years, I am living with stable disease. That stability has given me time to worry about those issues while also worrying about others as well. One of those “others” is my health insurance coverage.

The topic of healthcare and health insurance for Americans is a topic I wish I could avoid. It is a daunting subject of study full of political rock throwing and posturing done to persuade people that a certain plan will be best for a country with 324 million people. Getting as many people as possible to pay for an insurance plan allows for larger sums of money to be placed into a figurative pot that then can be used for those hopefully fewer members of that pot who are in need--that part is easy enough to understand. But the details of how it should be implemented, who the money should be distributed to, what dollar figure for premiums is actually affordable for the largest number of people, how to fund those that cannot contribute, and what health conditions and medicines insurance companies should cover makes for a complicated mess that is not easily agreed upon. 

The way I see it, conversations concerning healthcare and health insurance must not neglect how government agencies and private insurance companies will manage paying for every desire that people have in terms of the prevention and the treatment of illnesses. The main obstacle for everyone getting what they want from any system is money; it is finite. I wish there was an unlimited amount of it, but there is not. Because of that fact the inevitable yes's and the no's in the care of an individual's health are unavoidable. No matter how hard we wish it were so and no matter how much each of us may want to help the sick and want the government and insurance companies to pay for every person's illnesses endlessly simply isn't possible. Decisions to treat or not to treat happen every day. So, in determining where best to spend the available funds means that someone somewhere will be left with nothing but hope. Hope doesn’t have any purchasing power. That someone could be me. 

This post, though, isn't about the big picture of health insurance and healthcare in America. It is about my experience in it so far.

My health insurance is purchased through my husband’s employer. Every year his company negotiates a new contract with Blue Cross Blue Shield of North Carolina. So far, the changes have been minimal. The deductible has remained high causing financial woes for my family, but the benefits package has remained the same allowing me to receive the necessary drugs, surgeries, scans, genetic testing, and radiation needed to keep me alive. For that I am extremely grateful. With every change, I worry that a denial of coverage for some aspect or all of my treatment will come my way. On Friday, my worry became reality.

I received a large white envelope, and in that envelope I found words. Words that others have faced, but I had not until that day. There, throughout the first two pages, I read “. . . notice of an adverse benefit determination . . . declined to provide benefits . . . ”  I found that someone in the medical review department of my insurance company decided my current treatment drug “does not meet the definition of Medical Necessity found in the member’s benefit booklet.” Wow, so many words when one was all that was needed. The ugly one. The big, black, bold lettered one saying—

 DENIED!

And, I must let it be known, the denial is for a treatment that I have already had. That makes sense, right?

I knew what was coming as I read, but with all those extra words, for one hot second I thought maybe this wasn’t a denial notice. Yet, it was.  

Page two read with more words of denial: “. . . coverage of ado-tratuzumab emtansine (Kadcyla) is denied.” Further down, I read, “ado-tratuzumab emtansine is considered investigational when coverage criteria are not met.  . . . found insufficient peer-reviewed medical literature to show a beneficial effect on health outcomes compared to established alternatives. The member’s policy does not cover investigational services.”

Investigational? Kadcyla? What are they talking about? I have been on this drug for 3 years and 3 months.

I soon sent a message to the nurse navigator who works with me at the hospital where I receive treatment. She responded by letting me know she was contacting the people who will help me tackle this problem and get it appealed. Surprisingly, I felt calm that day believing the denial would be reversed. But, today, the heaviness I am feeling inside my chest caused by this denial further reinforces my ongoing fear that at any time when it comes to my treatment, someone will always be making decisions about it. Decisions about whether money should be spent on me or someone else.

How hard it is for me to accept that my existence is controlled by a disease and by the decisions of everyone connected to me. I mourn those lost days of which I believed I was in control of my living and my dying--oh, how naive. 

Until this issue is resolved, my treatment #57 of Kadcyla (TDM-1) has been put on hold. 

Breathe . . . I just need to . . .

Breathe.