Little Leaps, Big Bounds

Cancer moves exponentially, starting slow as invisible mutated cells find homes (unlike in functional bodies where they are peed out into oblivion) and then the mass or masses take off like that hopeful snow shape in a palm

that suddenly emerges as an obvious ball worthy of throwing or further building towards a snowman’s torso.

My cancer went from delicate growth (September/October) to a small bound (today). The news comes on the heels of more daunting recoveries from my most recent treatments. My husband scurried from one futile effort to the next to bring me comfort this last cycle, his only reward my teary confession that I wasn’t sure I could continue this path. It felt too hard and, in fact, stupid.

Yesterday and today I feel good (yahoo!) but the news is the cancer is feeling good as well. It’s on the move.

Who to call? What to do? I rollback over my choices, as my personal doubts mount, and recall, “Oh yes, I had to play my big card back in June when the cancer surged so fast.” But I played that big card. The cancer continues to play its hand. My hand holds few backups outside of hoping that the waiting line for UPenn moves fast and that I qualify for a trial slot sooner rather than later (or never).

Decent

Uh Oh!

Last week, I wept at the thought of enduring the back-to-back-to-back-to-back chemo days required by the UPenn protocol – HOW COULD I FACE THAT after these unrelenting five months of aggressive treatments. Today I want to book my flight to Phillly, elbow my sisters off the line and demand the start.

What odd creatures we humans are; or is it bigger than humans this quest to live?

I recall my last dog, Tony, in significant decline as he aged. Was he 16, 18? I didn’t know but he and I partnered in life for 15 adventurous, full years. Then he was deaf, dumb and blind, increasingly incontinent and having micro strokes. His rapid decline timed poorly with my terminal diagnosis. I wasn’t feeling well positioned to pull the plug. I decided as long as his tail wagged, his life was worth living. His tail wagged.

The vet gave me pills a year prior when she diagnosed the micro-strokes and a litany of other poor health omens. She inferred that these could be given for pain management (he wasn’t showing pain) or, hint-hint, to bring things to a close. Oh! My! In July of 2012 strokes left him barely able to walk beyond small circles. He stopped eating or drinking. I gave him every form of permission possible to die and started the pills. He lived. I increased the dosing and another day passed. This was like some very bad, slow moving skit. One night I gave him all the remaining pills, said my deepest levels of goodbyes only to awaken to a living dog and a husband declaring, “we are going to the vet now.”

The vet euthanized Tony – outside, on a vast lawn, on a glorious day. Tony, to the end, resisted. The vet said this was typical of dogs. Now I wonder about me.

Diem Brown was one more reality star I would never have encountered if she wasn’t plagued by recurrent ovarian cancer in the years prior to her death this past weekend at age 32. Two things struck me, again. One, how vibrant she looked mere weeks before dying despite surgeries beyond imagination. We want the dying to give us the courtesy of looking the part. It is the only way we, the outsiders, conceive of what is going to happen next. And then her last tweet, defiant, forward looking despite the cancer having engulfed her body as she swears,  “My doctors are seemingly giving up but I won’t & can’t rollover. Whatever option I have to LIVE I’m grabbing!”

I see this in my peers, regardless of age – at 82 and 32 – I see this commitment to life at all costs. And then there are the elegant exceptions. It’s a very big gray zone. Fighting vs. caving vs. bowing. Life is indeed a balancing act and the guidebooks rather vague.

“Enlightenment is always there. Small enlightenment will bring great enlightenment.” Thích Nhất Hạnh

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Can You Hear a Snail?

The Sound of a Wild Snail Eating by Elizabeth Tova Bailey is a profound and lovely book that shows how rich being alive can be no matter how “confined” we appear. Written by a woman dramatically bedridden (sitting up to travel to medical appointments, her only outings, is not possible) by the onset of an unknown disorder. This young and vibrant woman accepts her life lying down where just changing position is a big adventure. Rather than resist, she embraces her reality and builds a full world. A wild snail, brought home from a visitor’s walk in the woods she can no longer visit, is given a small perch on her nightstand. The snail’s world, vast to it, becomes her portal to stimulation and engagement.

A GREAT Book

The other week I attempted an honest response to how my summer has been. A summer of loss, I named it. I wrote in rebellion to an acquaintance having described my status (to me) as “Great!” I wrote that update while equally loving the summer of 2014. I regret my inability to capture how times can be both grim and wondrous – one truth need not cancel the other. Acceptance is the bridge. Increasingly I believe that balance is a core purpose of life. Joy despite sadness.

This morning I found out that my cancer seems to be breaking through treatment. I grieve. I handle logistics for my next journey to treatment on Monday. I prepare for a more intense period while feeling wonder at entering a phase more intense than the now. The dog and I walk through the woods and find enough comfort to know it is all just fine. I am not okay with my reality but  I can accept that it is my reality.

Excerpt from Chapter 2: Discovery

“Each evening the snail awoke and with astonishing poise moved gracefully to the rim of the pot and peered over, surveying the strange country that lay ahead. Pondering its circumstance with a regal air, as if from the turret of a castle, it waved its tentacles first this way and then that, as though responding to a distant melody.”

What’s in a Number?

Many cultures and individuals give power to numbers. Numbers can translate the seasons into a calendar. Numbers allow us to add and divide and track things in a linear manner. Numbers can cast a fortune or let us know if now might be a good time to buy a lottery ticket and they certainly make finding a destination manageable enough that between the street number and zip code we can find almost anywhere our Thanksgiving dinner might be waiting. And the wrong number, well, that leads to trouble.

Many cancer patients live by the numbers even as our doctors caution us to “wait, just wait.” But blood work translated to numbers is the first indicator our cancer might be growing, breaking through treatment, rushing our hopes. Setting that whisper aside is not easy.

Every 3-4 weeks since diagnosis my blood work has been tabulated into a number that I record in a chart. My chart shows helpful patterns since my marker, the ca 125, is a very individualized indicator. If we went by what is considered normal, I wouldn’t have had the recurrence of my cancer that I have been fighting since August 2011, a tough, long recurrence even if the numbers do not even reflect it should be there. So with my very small number range, I can track the relative behavior of my cancer especially between scans.

Seven or below are numbers I like – they allow me to sigh with the knowledge that my cancer is at least stable albeit visible. Now it climbs small baby steps – 8 in October, 9 in November, laughable upward creeps unless you have my tight range where new cancer growth is visible by 12. I feel sadness at what December may show in blood work and a new ct scan of the insides.

People love to count their blessings and I am no different. I will seat myself at the community table this Thanksgiving with so much I feel grateful for – cancer not being on that list. I share a story below about gratitude and being real. It may resonate with some of you and offend others. A friend relayed it to me who is better at attending cancer support groups than I.

One of my friend’s pals was in the end zone of his cancer, his cancer having just jumped the barricades of his last available drug and was now moving fast. He had weeks left and children still needing to be raised. He had enormous physical pain to boot. At this group a newly diagnosed terminal patient arrived in some place of deep gratitude over all the ‘gifts’ her cancer was giving her. The man turned to her and said, “Honey, you might not always feel that way.” The story has kept me chuckling at what some of us grumps choose not to be grateful for.

Happy Holidays!warmly, marcy

Living With Cancer: A Quilt of Poetry

A Quilt for Cara

Susan Gubar is a long time feminist, academic and someone writing loudly about her life with ovarian cancer. She is not the queen of cheer. While accepting the diagnosis of death from the get go, she wrote an entire book about about how hard she found the not dying of the disease in, “Memoir of a Debulked Women”.

Her most recent NYTimes blog post included this poem that she pieced together sharing her love of quilting and words. Each footnote indicates a different writer that she borrowed the line from. She introduces the poem writing, “The chaos of feeling that surrounds disease differs for men and women subjected to quite different cancers. So I used visceral verse by both men and women to convey a chaos of feeling that all of us can share.”

I, too, quilt and love words but after a long week I am too tired to do more than share her most splendid poem of many. (Even the blog title is borrowed from her today.) The quilt photo, though, is taken by me of a quilt I made.

My mouth opens and closes around the word cancer.¹
Try saying fear. Now feel
Your tongue as it cleaves to the roof of your mouth.²
Once again I dress in white
paper and climb onto the table.³
Together we explore my inner landscape on the screen.
He plots a course and charts me frame by frame.⁴
And then there’s the blood tests. How many blood tests?
(Too many to count.)⁵
Negative = Positive, Positive = Negative = Bad.⁶

Even the surgeon who puts you to sleep
knows you will wake up robbed.⁷
What awaits you:
the leg bag, the IVs, the foreskin
looming like a skunk’s tail …⁸
Each wound speaks
its own language.⁹
What is the splendor of one breast
on one woman?¹⁰
They’ve emptied your body of its enemies,
they’re filling you with sterile juices.¹¹

I return across the darkened ward;
the grunts, coughs, and farts
sound as if I’m billeted on
an active volcano.¹²
The windows grow dark
and the grim snort
rasping from the next bed
never lets up, makes the night shudder.¹³
Was it for this, this, become a patient, transformed to a shivering sack of blood to be spilled?¹⁴
And the dark night tracing of malevolent lymph tracks, fear scaling the ice-rungs of my spine?

I need to see my tumor dead
A tumor which forgets to die
But plans to murder me instead.¹⁵
I don’t know how to die yet. Let me live!¹⁶

 http://well.blogs.nytimes.com/2013/07/25/living-with-cancer-a-quilt-of-poetry/?_r=0

1. Joan Halperin, “Injunctions,” in “Her Soul beneath the Bone”
2. Alicia Suskin Ostriker, “The Mastectomy Poems,” in “The Crack in Everything”
3. Sandra Steingraber, “Outpatient,” in “Post-Diagnosis”
4. Pat Borthwick, “Scan,” in “The Poetry Cure”
5. Lucia Perillo, “Needles,” in “The Body Mutinies”
6. Susan Deborah King, “Everywoman’s Lexicon of Dread, with Commentary (Minimal),” in “One-Breasted Woman”
7. Pat Gray, “Cancer in the Breast,” in “Her Soul Beneath the Bone”
8. Gustavo Pérez Firmat, “Post-Op,” in “Scar Tissue”
9. Richard M. Berlin, “Wounds,” in “Secret Wounds”
10. Lucille Clifton, “Consulting the Book of Changes: Radiation,” in “The Terrible Stories”
11. Sandra M. Gilbert, “For My Aunt in Memorial Hospital,” in “Emily’s Bread”
12. Ifor Thomas, “Poleaxed,” in “Body Beautiful”
13. Abba Kovnar, “The Windows Grow Dark,” in “Sloan-Kettering”
14. C. K. Williams, “Cancer,” in “Writers Writing Dying”
15. Harold Pinter, “Cancer Cells,” in “Various Voices”
16. Marilyn Hacker, “Cancer Winter,” in “Winter Numbers”

Do Clinical Trials Work?

Do Clinical Trials Work? (Spoiler alert, this ends on a positive note. Cancer patients don’t need any more bad news!)

Clifton Leaf studies cancer treatment. He wrote “The Truth in Small Doses: Why We’re Losing the War on Cancer – and How to Win it,” a book just being released this month. It is billed as:

 A provocative, eye-opening history of the war on cancer, The Truth in Small Doses asks why we are losing this essential fight and charts a path forward.

OVER THE PAST HALF CENTURY, deaths from heart disease, stroke, and so many other killers have fallen dramatically. But cancer continues to kill with abandon. In 2013, despite a four-decade “war” against the disease that has cost hundreds of billions of dollars, more than 1.6 million Americans will be diagnosed with cancer and nearly six hundred thousand will die from it.

A decade ago, Clifton Leaf, a celebrated journalist and a cancer survivor himself, began to investigate why we had made such limited progress fighting this terrifying disease.

Timed to the book’s release he authored an opinion piece as the lead article in the July 14, 2013 New York Time’s esteemed Sunday Review section entitled, Do Clinical Trials Work?

http://www.nytimes.com/2013/07/14/opinion/sunday/do-clinical-trials-work.html?pagewanted=all&_r=1&

I skimmed the lengthy piece so I won’t pretend any quality summation of his perspective but I do think he captures the moment we are in. The egregious cost of bringing any new treatment to market ($12 billion by one estimate) and the sobering failure rate of 95% of tested drugs not gaining approval, encourages drug companies to market each drug as ‘one size fits all’ cures. This correlates poorly with the huge advancement of these times – the realization of just how unique each person’s disease is and that personalized treatment is the way to go. Neither cancer treatment nor the drugs can be one-sized fits all.

Avistan is a great example of a drug marketed at great cost as a life-extender for many, many cancers. The drug costs a lot – so much that some countries like Britain have rejected its use multiple times because of the cost. Similarly many insurance carriers wont cover the cost. Proof of its effectiveness is pretty darn weak. Partially because it is a newer drug and you need time to prove that it keeps people alive longer and partially because, well, it might not be that effective; at least in the masses. There is evidence that in a small percentage of patients (I have heard as small as 3%) it could be a truly powerful life-extender. The focus should be in finding the 3% for this drug not in expending obscene sums of money to credential it as the standard of care for all patients. The drug is probably cost effective when matched with the right patient. But at that scale it might not seem cost effective to the drug company to bring to market. (Please note: Avistan is an angiogenesis inhibitor, a drug that slows the growth of new blood vessels to cancer tumors, hopefully killing the tumors. It is a drug I have been on for over a year and resisted starting it for the nine months prior despite knowing how ‘lucky’ I was to have insurance agree to pay for it. Avistan has hard side effects – surveyed women recently rated their quality of life on the drug as lowered. I would heartily concur. It makes us ache all over and reconfigures our nose’s interiors’, literally. And some of us fear it’s possible ‘blow-back’ where it may contain the cancer short term but when the cancer does come back, it is untamable.)

I bet you are starting to see the problem. Drug companies believe they can only realize profits (and remember their upper level pay scale!) if they mass market. Researchers meanwhile are now showing the breakthroughs in micro markets.

While the article casts a distressing assessment on clinical trials as a way to advance science and identify new protocols, it doesn’t disprove their value for people like me. When you have advanced, recurrent cancer of any type, you need to be on the cutting edge of treatments and or incredibly lucky. And lucky is not what most people with advanced cancer get noted as. Clinical trials have value. They give us, the patient, a shot at shopping for a better match for our situation.

It is important that patients consider what they need and how they can get it. Many patients assume that their medical team will figure this out for them but more likely, their medical team will offer them the standard of care of the moment. This may well include clinical trail options that have recently been announced or are offered at their institution but that is a poor way to match patients with trials. I have had excellent medical teamwork throughout my cancer journey and I still would not expect them to find the best trial for me – they work hard enough managing the best standard of care options for our dicey disease progression. This feels like reality amid the pressures of delivering medical care in 2013. It is the exception for a medical team to match patients up with the best trial options. It happens but when you are facing a terminal illness, such odds might not be good enough.

Given my personality, diagnosis fast led me to become a modified expert on ovarian cancer and cancer in general. My ‘expertise’ is regularly humbled in the face of other patients who seem to bring retention and some basic understanding of science to their own inquiry. Many of us cope by understanding what is going on. I have found peer-to-peer knowledge to be accurate and very helpful. Most cancers have websites that allow endless discussions on all aspects of dealing with the disease. (And yes, drug companies tend to fund them and, while not often, you will find a certain type of post gets disappeared quite fast – but that is another story.)

The point of this post is to encourage you to read Leaf’s article and book but not to get stuck in what is wrong. You don’t need to fix it, although you should consider helping out by becoming an advocate for improved practises. But what you should really, really do is know that you and your support team (best friends, lovers, family, co-workers) need to drive finding the best treatment options for your cancer, especially after you have recurred. There are tools to make this easier.

National Institutes of Health offers its comprehensive website at clinicaltrials.gov – but this is a site designed for the well trained. Luckily, for the rest of us there are many intermediaries to make the search easier. Here is a small update on one such tool from the Summer 2013 edition of Cure Magazine. http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/2139

Finding a Clinical Trial Just Got Easier

BY JON GARINN

By almost any measure, clinicaltrials.gov, the website administered by the National Institutes of Health, sets the standard for providing public access to comprehensive information from around the world about research on experimental treatments for an array of diseases and conditions. Yet, despite more than a decade of efforts to improve its functionality, simplify access to its database and synthesize its information, navigating the site can be a challenge.

That’s why a Florida doctor teamed with healthcare professionals from dozens of medical centers, research institutes and medical schools to develop MyClinicalTrialLocator. MyClinicalTrialLocator.com, a site designed to make searching for a trial easier.

Designed for patients as well as medical professionals, the site not only utilizes the government database for clinical trial information but also includes important updates from medical centers conducting the research and enables users to search for trials anywhere in the world. In addition to studies of drugs and medications, the site also details studies of medical devices, procedures and interventions, and lifestyle factors, such as nutrition, diet and exercise. Users simply enter the name of their condition, their location and the distance they are willing to travel. Listings provide a plain-language summary of the trial, including recruitment information, eligibility criteria and contact details.

The service is free, and access is open to any user, though visitors are encouraged to establish an account so that they can save their searches and receive customized email updates and automatic notifications based on their search criteria. To learn more, visit MyClinicalTrialLocator.com.

There is also http://www.cancertrialshelp.org/cancer-trial-search/.

Go find the best match for you or your loved one.  xo marcy

Surviving Recurrent Ovarian Cancer

There is no recipe for staying alive with advanced, recurrent cancer – and ovarian cancer by definition tends to be advanced and recurrent. Alas. Luck seems to be the only constant in outliving the odds. My luck hasn’t seemed great of late as my first recurrence has involved a year of running through various chemos until low dose taxol brought me enough shrinkage and stability to start Phase One of a clinical trial at the University of Pennsylvania. I now travel cross the USA for treatment every two and a half weeks. Is it crazy to still feel so alive?

Why not feel alive?

I completed my fifth trek to Philly and second round of treatment this past week. Outside of the city being beastly hot, there are no riveting ups or downs to report. The thunderstorms that shut down all flights just as my plane backed onto the runway sucked but that is Mother Nature and my poor relationship with the gods of travel stepping in again. For an Oregonian, though, this new constant of daily thunderstorms most afternoons is its own form of excitement – Western Oregon averaging a mere three thunderstorms a year.

The routine is becoming just that. My sister, an emergency room doc and 18-year survivor of stage 1 ovarian cancer, travelled in to greet me. She is the big sister despite her smaller frame – 18 months my elder. Living far away with her own life of demands, our rendezvous in Philly allowed her to treat me to a vacation while holding my hand, at times literally, during treatments. As someone inclined to do it all solo, it was a lovely treat. Especially the finger to squeeze and the voice to soothe as the two vaccines to the groin searched out deeper lymph nodes to inject this time.

Vacation meant strolls and delightful meals out in Philly, the city beyond hospitals.

A sister meant no luggage to schlep. A sister meant all needs all the time were met. A sister meant no need to explain or entertain, we could just be. My prescription for nausea was filled while I stayed being infused. Lovely. Although that did mean I navigated the fire alarm alone. The alarm droned, “this is not a drill” with flashing blue lights, while failing to say what you do when it is not a drill. Everyone in the ward was tied to toxic chemicals. It is a large building. The answer seemed to be for the staff to close you in your single room. Such solitary confinement never goes over well with this gal assigned a windowless chamber. So I left, found a lounge window ledge to sit on, infusion equipment in tow, and watched the fire trucks arrive. My last treatment overlapped with the collapse of a downtown building and the 12 survivors being brought to this center. I am getting used to the secondary dramas unfolding in a large urban hospital.

My ‘vacation visit’ with my sister was over too soon. I don’t know how to survive recurrent ovarian cancer but I do know enjoying the moments probably does not hurt. Hopefully, getting into one of the most exciting clinical trials of the times will help as well. Stay tuned!