Tuesday, May 31, 2016

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

2h2 hours ago
Lisa: Only honest convos about the nature of cancer will move $ to research:

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.

Monday, May 2, 2016

“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.

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.