Tuesday, March 24, 2015

Stable Disease

It's one of those days. I can't stop smiling.
      Spring has arrived after a long, grey winter here in south Texas. It was dank, it was long, it was wet and cold.  I felt like we were living in England only without high tea or great accents.
       I've been dealing with a progression of my cancer that turned a lot of things upside down for a time. My husband's cancer also recurred for the fourth time. Between my cancer, and his cancer, we marked a permanent path down to the MD Anderson Cancer Center. We considered lobbying for frequent flyer or some other kind of "big user" award. Surprise, this went nowhere. Obviously we find our way through difficult times, by weird humor and staying focused on what needs to be accomplished. We waited for appointments, then scans, then scan results, and then a surgery date for DH.
       On my part I've learned a lot about the seasons of metastatic disease in these past four short months.
Amaryllis & orchid. Amaryllis planted 12/2014.
        When I planted this amaryllis I had just learned that the metastasis in my stomach had grown and become more aggressive, not receded via hormone therapy as was hoped. The symptoms and realities of stomach mets are not pretty. At its lowest my weight dropped to 89 pounds. Malnutrition was a valid concern. Eating anything was a challenge and the holidays and all its delicious foods were approaching. Managing nausea on a daily basis, one of the difficulties thousands of cancer patients face, was something I hoped not to have to juggle again yet I did. The motto was whatever food worked hit the "approved list." If palatable Hostess Twinkies even would have been acceptable. Oddly enough I found that potato chips or occasionally pretzels worked. I sipped ginger ale and ginger tea.
       All those things helped but two key elements were instrumental in leading to happier day I'm experiencing now. One was welcoming the opportunity to consult with a supportive care physician and the other was my own desire to participate in a clinical trial.
         The natural progression of treatment was to switch from the aromatase inhibitor letrozole to the estrogen receptor antagonist fulvestrant, or Faslodex. This comes in two hefty 250 mg injections straight into your rear end that can feel like a pack of hornets if too cold or if njected by unskilled hands. These injections are paired with #GDC-0032, an investigational P13K inhibitor developed by Genentech. Many advocates and people I respect have heard positive news about this medicine, which works by shutting down one of the key highways involved in cellular proliferation.
         The first month of the trial involved frequent appointments and blood lettings, and some start-up frustrations because I was the first and only patient on the trial. What this means is that something as simple sounding as an EKG can become a big deal because it involves a brand new protocol and by the way, who is writing the rule book? In other words, the kind of excruciating details that leads to waiting and frequent, long emotive sighs.
          But detail is the name of the game. Health tracking via the phenomenally old fashioned paper form and ink pen is a daily event. There's nothing like a clinical trial to throw a glaring spotlight on any and all dysfunctional bodily functions. What goes in and more important, in what form it comes out, are just fodder for the data accumulation that ultimately becomes known as side effects.
Clinical trial recording. 
        There are unexpected trial benefits, aside from access to what might become a very successful cancer-fighting treatment.  When you enter a trial -- at MD Anderson anyway -- you are assigned a clinical research nurse who is there for you 24/7.
With Silvia Hodge, RN.
It's like the patient navigator you always wanted, only better. She arranges all the appointments, answers questions, commiserates and if she's swearing about my constant emails underneath her breath, I don't hear it. She even laughs at my jokes. Points, points, points. What I know is that she is one of the most patient-centered individuals I've met and I'm lucky to work with her.
          The other improvement in my health came from my work with a gifted physician in the supportive/palliative care department. Often confused with hospice, supportive care does exactly that, supports the individual's experience with cancer and treatment-related side effects. It's brilliant. By working with a new medication and adjusting accordingly nausea is no longer part of my daily experience.  I'll no longer say I won't ever have it again, we are talking about cancer here after all.
         Last Wednesday at 7:30 am we started a round of testing to see how successful my current treatment is. My symptoms are better and my awesome oncologist has frequently said that she "doesn't treat a number." She puts as much stock into how I'm feeling as the raw data, tumor markers and scan results, for example. And for now I'm in a kind of a valley, a holding pattern. My disease is not actively progressing nor am I clear of disease, either.  It is best described as stable. There are areas to watch and I am content with that, watching them. Not everything in cancer has to be acted upon immediately. The trial scanning protocol is conservative and we will scan again (both MRI and CT scan) in just two months. Any bit of cancer that has ideas other than holding still will be caught and brought to justice. That's what I've learned in this season of cancer.  I'll always have cancer yet I have a team at MD Anderson that will go the distance with me. Friends have stepped forward and clearly demonstrated their love, compassion and courage. Yes, some things could be better as far as my health nows. But being here and writing and chatting with you today is simply marvelous.  It just is.


Make someone's day a little better, a little brighter.

Tuesday, November 4, 2014


For the past few months it seemed like I was on a cancer sabbatical.
Outside Crested Butte, Colorado 

DH and I hiked in Colorado and along the Blue Ridge Parkway. I visited a friend in Chicago, started knitting up a storm after a visit to a yummy yarn shop there, and joined Dr. Deanna Attai in San Francisco for ASCO's Breast Cancer Symposium, where she presented our poster on #BCSM, "Can Twitter Social Media be an Effective Tool for Breast Cancer Survivor Support and Education?" Later that month my sister and I had a marvelous time together at our nephew's wedding in Iowa. Her son and his girlfriend were able to join us as well and everyone was having such a great time no one took photos of all of us together. It's been an extraordinarily rich time, the colors brighter. I'll remember mountain air at dusk edged in lavender.

That's how life flows, in and out, as rhythmic as the sea. 

My time between cancer check-ups had been moved out to four months from every three months.
With Deanna Attai, MD. ASCO Breast
It was like stretching out in newly discovered freedom. Due to a glitch with my new insurance injections of Xgeva were interrupted so all of a sudden I had NO cancer appointments for two months. No email reminders..... your appointment is in seven days, your appointment is in three days, your appointment is tomorrow. Excuse me, but you need to show up now. Any cancer patient will tell you that the never-ending appointments remind you all over again of your illness just about the time you've managed to reduce the dreads and dark thoughts down into a manageable size.

It never even occurred to me that this was too good to last but as I was leaving yesterday to meet with my oncologist for last Friday's scan results I suddenly tweeted: "cancer stirs up all the great uncertainties. Even tho I'm feeling well I'm holding on to the other shoe hoping it doesn't drop." 

Well, the shoe didn't actually drop but I was reminded that cancer can change the trajectory of your life far like that. The good news is that my scans indicated stable disease. That is excellent given the scope of disease when my mets were diagnosed. Scans, combined with your physical well being and symptoms, are the key players in determining the course of treatment. Tumor markers, substances in the blood that measure your response to treatment, are also factored in. The challenge that presented itself is that my tumor markers have more than doubled since my last appointment. Something is happening cancer wise, we just don't know what that is yet, or even if there will be a problem. It could be growing disease that isn't yet visible. It could be disease that isn't doing anything, that is simply there. Because it is. kAll we have is a number, albeit a scary one. I can't treat a number, my oncologist said and I agree with that. 

She was concerned and assertive. We wouldn't change treatment but we will change strategy. The four-month sabbaticals between appointments is over for now. I'll return in two months for more detailed imaging, MRI's of the abdomen and pelvis instead of CT's. In the interim, I'll meet with my GI oncologist again to see if a repeat endoscopy is in order. A year ago that's how metastatic breast cancer was discovered in my stomach lining. That's the dog that caused all the symptoms I was experiencing a year ago and have started to return, a bit at a time. For the time being I'm returning to my broth/bread/ice cream diet to stay on the safe side. 

Earlier this year we celebrated when I was able to eat salad again, and enjoy a big glass of water at once. I'm sure those days will return. My cancer sabbatical has shored me up with a wealth of experience and images, long days where cancer never entered my mind. Whatever this is, we'll get through it. Earlier today a friend posted what seemed perfect for the next few months of uncertainty, "Hope for the best. Cope for the rest." 

That's how we roll.  

Tumor Markers -- NCI 
ASCO Guidelines on Tumor Markers -- ASCO*
     Thanks to @thecancergeek for tweeting this during out 11/3 #bcsm tweet    chat, "Ask the Docs." 

Wednesday, September 24, 2014

True October

“Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it’s the only thing that ever has.” Margaret Mead

It’s coming. I’m not talking about Christmas —  even if the ornaments are out already — but the October pink that will soon cover the earth. Trickles of pink already started appearing in August. Within a few years’ time I expect we will see pink streamers competing with the red, white & blue bunting at July 4 festivities.  

Breast Cancer Awareness Month, initiated in l985, is now a commercial mainstay of the cancer scene — the pharmaceutical companies, hospitals, cancer centers and nonprofit organizations that aim to prevent, treat and cure this awful disease. And yes, here we are almost 30 years later, same month, hearing some of the same talk about prevention and early detection. It seems to me that everyone is aware of breast cancer.  Few understand it and even more I think, are afraid of it than ever before.  

Fear doesn’t help. Early on I tried to shrug off my initial, Stage III diagnosis with my oncologist. I wanted not to have cancer. “But this is the good cancer, right?” I asked him. As always, he told served up truth on a platter.

“There are no good cancers.”

Then when my cancer metastasized I was compelled with that same urge. I wanted to know that the metastasis creeping around wasn’t particularly dangerous. Or threatening. Yet. I wanted out of the Stage IV group and into the category of women who die with — not of — breast cancer. 

What can I say.  A metastatic diagnosis temporarily leaves you senseless.

Since those early days, between what I’ve experienced with my disease and seen in the metastatic community, my thoughts and perspective have inevitably changed again. 

From where I’m sitting the pink parade can go on without me. Games can take place. Eventually November will arrive. The issue isn’t whether or not awareness helps but the kind of awareness we need to advocate for, the kind of awareness worth the time you have here on earth. Coping with October is about focus, not on noise or commercialization, but on the very real work that must be done now.
* * *

Almost one third of all women and men diagnosed with early breast cancer — there are approximately 1.6 million new cases a year worldwide*— will go on to develop metastatic disease. Metastatic or Stage IV illness, where cells leave the original tumor and establish new outposts in the skeleton or visceral organs, is not curable. It can be treated in a variety of ways that range from the mildly (expletives deleted) disruptive to a life-long balancing act with chemotherapy and its cumulative, toxic impact. The grim and often-repeated survival statistics are not inspiring nor do they bear repeating. Prognostic stats use information from the past to predict how you will do in the future. But as any oncologist can tell you, you can have five women with biologically similar cancer, they can have the same treatment and you can still have have five completely different outcomes due to the individual characteristics of each women and how her disease reacts to treatment. Treatment fails too many. 

If we are to reach a point where breast cancer is 1) turned into a chronic disease for all subsets, from the seemingly indolent to the shockingly aggressive and 2) treatments are stripped of the toxicity that renders a patient’s quality of life unmanageable then advanced breast cancer must have more research and education. 
Joyce. Part of treatment for
thousands yearly.

Late last week the second international congress on advanced breast cancer  — ABC2 — issued new guidelines on advanced and metastatic disease with an urgent plea for “high-quality research” for this “historically neglected population.” These guidelines bring the best evidence to bear on advanced disease, including the recent trials on everolimus (Afinitor) for hormone-positive metastatic disease and pertuzumab (Perjeta) and trastuzumab emtansine (Kadcycla) for HER2-positive disease. It also details treatment guidelines for hormone positive, triple negative, hormone positive and locally advanced breast cancers (LABC). 

"Advances in survival outcomes for ABC, particularly MBC, have been frustratingly slow," the report notes. "MBC remains a virtually incurable disease and LABC patients vernally have a poor prognosis with a high risk of distinct recurrence." 

The report is significant for many reasons. To reach consensus on anything related to breast cancer treatment in and of itself is remarkable. The international group of health professionals, advocates and researchers is the first to define treatment guidelines and advocate for metastatic disease from a global perspective. The report is clear, distinct
and bold. The guidelines take an additional step and pinpoint where “…research efforts are urgently needed.” They include:

- Patients with metastasis to the liver, pleural cavity or the skin; 
- Men with advanced breast cancer prescribed aromatase inhibitors  (exemestane, letrozole, or anastrozole); 
- Patients with advanced HER2+ disease who relapse shortly after treatment with trastuzumab (Herceptin) and, 
- The role of surgery for the breast tumor when the cancer has already metastasized.

The report also stresses the need for multidisciplinary, international trials and the education of health professionals on the application of the new information, psycho-social support, early palliative care and patient engagement -- all the things empowered patients stress.

In fact the steady work of advocates stressing the unique clinical needs of advanced and metastatic patients shows. The typical scenario is to test new drugs on metastatic patients. Then, once efficacy is established, there is a quick movement to test the treatment in earlier stage patients. While moving trials to treat earlier stages is as it should be, the continued treatment of the metastatic patient with that drug and others is left unclear. "So this is what we plea for, that yes, once you have enough data, move to the early setting, but remain and keep investing some effort in understanding how best to treat the advanced breast cancer patient. They are one third of all breast cancer patients patients and they deserve that," said Professor Fatima Cardoso, lead author and co-chair of the latest guidelines. 

"Emerging drug research and treatment guidelines work hand in hand," said renowned advocate and author Musa Mayer. "As the research discovers new treatments to prolong and improve life for people living with mets, the guidelines help us use the tools we have today as broadly and accurately as possible, clarifying for governments and payers all over the world what resources are basic for optimal care."

I could probably continue to write about all that's contained in this report for the rest of the day. I've read it a few times now and continue to learn more. But I'll close with the thought of "optimal care" for every person diagnosed with breast cancer, from Minneapolis to the Maldives, Tuscaloosa to Tanzania. That is the truth I see in October. The ground swell to bring metastatic breast cancer issues to light is here. Raise your voice. 


The first International Consensus Guidelines Conference on ABC (ABC1) was held in 2011. ABC2, which attracted some 1100 participants from 71 countries, took place last November in Lisbon. The conference was organized by the European School of Oncology (ESO) and the European Society of Molecular Oncology.  A list of participants is available in The Breast. 

1. “Experts issue plea for better research and education for advanced breast cancer,” September 18, 2014 medicalxpress.com 
2.  Annals of Oncology (online) “ESO-ESMO 2nd international consensus guidelines for advanced breast cancer (ABC2), September 18, 2014.  Published in The Breast  September 20, 2013. 

Thursday, April 10, 2014

Just A Salad

Last week I finished the first salad I've had in months. Of all things this is the last test you'd think of as a measurement for metastatic breast cancer. But it's just one of the many ways this disease can impact the lives and health of the women and men it strikes every year.  As with primary breast cancer, you can take two different women with exactly the same breast cancer and how it manifests itself will vary.
      The salad itself was simple. Measly even, compared with the vegetable-laden salad bombs I used to toss together. It was all spinach, with hard-boiled egg, some chunks of chicken, mushrooms and a smattering of some excellent French feta (don't ask me who did the labeling on that one) DH picked up at the market. DH had made the salad himself, in fact, after his internist not so gently suggested he make a concerted effort to work more "green stuff" into his diet. He was out cycling so I figured if things did not go well he would be spared knowing that his creation, like so much other food, was quickly spit out by my digestive system.
       That's been the problem. After my initial mets diagnosis and accelerating through the summer and fall I continued to lose weight from nausea and vomiting. Blergh. It took my energy and my strength. Suddenly I empathized with pregnant women suffering from morning sickness. I took ginger in every conceivable form, threw that up, carried saltines in my purse, and ate teeny little meals. My nutritionist at MD Anderson became my inner cheerleader. Yes! I could eat every two hours! I would eat nutritionally-dense foods! I would add peanut butter to everything! I could do this! But when DH returned from the grocery with a carton of Ensure I suddenly felt like we were in the middle of a senior citizen sitcom with a lousy script.
      During this time I learned another rite of passage of the metastatic underworld: familiarity with emergency rooms. Emergencies in metastatic illness can happen quickly. Ultimately I did not wrestle with this fact but learned what I needed to do. Dehydration from vomiting can send you down a bad path. When the nurse scolded me for waiting too long before coming in I was about to turn pissy on her until I realized that what she was telling me was that witnessing suffering is hard. It didn't have to get this bad, she was telling me. The next time it didn't.

* * *

Beginning in June my regular oncologist was taken up by meetings, conferences and vacation.  DS (darling sister) and I joked about this upset by calling the substituting oncologist Dr. Today.  Unlike my regular onc, Dr. Today did not come into the exam room prepared. She usually appeared sleepy.  Or bored. Or both. I was convinced my cancer bored the hell out of her. Since I was on the vomiting end it was not all that boring to me. Not surprisingly, when my regular oncologist returned we talked for less five minutes before we had a GI consult arranged. 
      That brings me back around to my salad. As you know, metastatic lobular cancer was found in the lining of my stomach at the end of October. My oncologist told me that the aromatase inhibitor I was on, the formerly $4-now-$22 letrozole, would work at eliminating the cancer but it would work more slowly than chemotherapy.
       He was right.  It has been worth the wait.
       It was a year ago today that I was lying in the ultrasound suite at MD Anderson waiting for the results of a lymph node biopsy from my neck. You know the rest of that story, but the one I just told you is new.  There will be many more. As of now all systems are go in a gentler, slower way. Yesterday I just returned from five days in San Diego as part of AACR's Scientist-Survivor Program. I managed to practice self-care AND fully participate in the program.  No, I didn't get to the 7 am "Meet the Expert" sessions I wanted to attend, I missed some lectures, and I put up my feet instead of putting on heels for a late evening reception. When the mental fatigue and fog set in I remembered to keep my eye on the prize: learning, educating and advocated for women with breast cancer.
       And believe me, did I ever enjoy my salad.  Dear God, few things have ever tasted so good.


Monday, January 13, 2014

Cue the Kellers

Lisa Adams is a stunningly articulate blogger and mother of three from New England who has suddenly found herself as the Rorschsach test for two prominent journalists who should have known better. The husband and wife team, Emma and Bill Keller, writing for the Guardian and The New York Times respectively, in the end tell us more about their own fears and experiences with cancer than they do about Lisa and her current difficult treatment for metastatic breast cancer.  She has currently been hospitalizaled at New York's Memorial Sloan Kettering Cancer Center (MSKCC) for almost two weeks now.

The two pieces of writing are disrespectful, inaccurate, and to return a word grenade lobbed by Emma Keller in her Guardian piece, "unethical."  Somehow both writers managed to conclude that Lisa is dying (metastatic and terminal are not synonyms), a huge assumption that isn't theirs to declare.  Most bloggers I follow, including Lisa Adams, pay more attention to accuracy than these journalists did. Keller, former executive editor of The New York Times, originally misstated the number of children Lisa has. Emma's piece has been removed from the Guardian "pending investigation."

There are many levels on which their "blame the patient" posts are so wrong but I'll stick with two: the gigantic misunderstandings surrounding metastatic breast cancer and a withering lack of savvy about social media and its role in fostering healthy epatient communities.  

Somehow, both writers have found the whole idea of patients writing about their experience, and how @adamslisa in particular does so, strangely offensive. Cue the Kellers with a big welcome sign to the 21st century!  Cue the Kellers: no one is forcing you to read anyone's tweets!  Cue the Kellers: ever since blogging platforms evolved we've heard from men and women about their disease experience and exchanging that knowledge with others. Cue the Kellers:  Peer to Peer Healthcare  published in 2011 by Pew Internet, a project of the Pew Research Foundation. 

For many of us, social media has been the only vehicle in which something approaching truth can be found about living with cancer, and I mean actually living with it, not understanding what cancer is or a definition of chemotherapy. We want hints on helping a phlebotomist find the sweet spot and ten ways of stopping nausea without Zofran. We want to find out more about genomic analysis and in when it's really helpful. No breast cancer patient is going to find these kind of essential details about treatment from the web sites of breast cancer organizations.  We find this info from other patients. The organizations may have been founded with the best intention to end disease but each is ultimately vested in its own survival. Patient communities, on the other hand, and patients within social media, exist to help educate and help each other. Patients share freely.  It is interactive, dynamic, and powerful, not a one-way street like a newspaper.

The understated nastiness of Bill Keller's "Heroic Measures" starts early. He refers to Lisa as  " ... a research subject and proselytizer for the institution" (MSKCC).  The subliminal shift to "research subject" shows where his perspective hovers about cancer. He constantly uses military language and metaphor, which isn't part of Lisa's style book. Bill Keller's perception of cancer is limited, naive and just plain stupid.  Women with metastatic breast cancer or anyone with metastatic cancer period can endure difficult periods of illness and pop back to tell us about it next month. Cancer treatment, even today with many advances, is grueling.  Earlier today I corresponded with a woman who has been in hospice three times. She isn't even 60. Yet Keller's point of view is based on this, "In October 2012 I wrote about my father-in-law's death from cancer in a British hospital. There, more routinely than in the Unites States,* patients are offered the option of being unplugged from everything except pain killer sand allowed to slip peacefully from life." If that's not enough, since Keller has already misread what Lisa has written about the palliative care she's receiving, "His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America."
Wow.  He writes on from there for about two more pages. That basis is where Bill Keller's understanding of Lisa's situation stopped, if he ever had any understanding of her situation to begin with.  He extrapolates the experience of one (elderly? it looks like Keller himself is middle aged) family member with cancer to everyone with cancer and especially to that woman whose tweets annoy him.  It is a failure on an unforgivable scale.
Cue the Kellers: next time you want to write about cancer, take a look at your own stories.  Better, yet, just talk between yourselves.

                                                                            #   #   # 

*Thousands of patients in the United States are offered palliative care on a daily basis.  The UK doesn't hold a patent on this.  There is a weekly tweet chat on Twitter every Wednesday evening on hospice and palliative care under the #hpm hashtag at 8 pm CT.

Tuesday, November 19, 2013

The Cone of Uncertainty

Anyone living along a coastal area knows about the cone of uncertainty.  These are widely ranging swaths of land that lie in the projected path of a hurricane or typhoon.  The cone starts small, at the point of landfall, then widens exponentially to include every blade of grass or bird that could possibly be impacted by the storm event. 

At one point prior to Hurricane Ike the weathermap showed IKE sucking up heat as it moved across the entire Gulf of Mexico, then striking the Houston Ship Channel and barreling up a narrow corridor until it landed directly on my house. I was sure of that. This was not a happy moment. I crawled into the bathtub with the dog and ate almonds and chocolate while the storm ripped all the leaves off the trees for miles around and anniliated large sections of beach and homes in Galeston, which suffered the most devastating damage.  

Hurricane Ike's Cone of Uncertainty 

This came back to me again because I've been living in a cone of uncertainty for the last month or so.  My thoughts darkened.  I felt like I was sheltering in place, treading water, as I waiting for results from tests and as importantly, learning what those tests meant in the context of my life, my health. This is especiallly important in cancer, where an errant fact might look bad yet fit in a cohesive narrative on an indivual level.  From what I knew? I could be in trouble. Or not.  And I wouldn't know the answer for a number of weeks.  
            At the end of October metastatic breast cancer was found in the lining of my stomach.  My oncologist had ordered an endoscopy to check out my gut's workings when I continued to lose weight and suffer from bouts of nausea and vomiting without rhyme or reason.  None of these episodes could be related say, to a batch of minor food poisoning or a 24-hour virus running through the community. 
            Metastatic lobular breast cancer,  this little darling of a breast cancer I have (only comprising from 10-15 percent of all breast cancers) can weasel its way anywhere, sneaking along through the lymph system and even wedging between the lining of the stomach and the muscle. When my oncologist explained this yesterday, drawing a decent stomach, esophagus and upper intestine, he penciled in how the cells line up between the two layers. From there it was a mental skip and a jump to grasp what is described medically as a "plastic-type" presentation. As the cells accumulate the stomach itself becomes more rigid and and lead to the symptoms I've been experiencing. 
           But the stomach mets did not represent progression.  No progression.  In cancer land there's no better music to one's ears.  The stomach mets were mostly likely present when I was diagnosed with metastatic disease in April.  These would not have become apparent on CT until they formed tumors and given the symptoms I've already had, I shiver to imagine how ill I would have been by then. 
           So the good news definitely is no progression.  The obvious news is learning to live with a stomach that's been damaged by cancer.  Some, but not all, of the damage will ease as Femara continues its work.  An aromastase inhibitor, which works by blocking the enyme that allows androgen to convert to estrogen, Femara has done remarkable work in my system in six months, nearly knocking out the extensive lymph node involvement I presented with.  This is like removing the tree trunk from all the limbs. The more we continue to shut down the feeding system, the fewer malignancies -- like these monsters creeping along in my stomach -- will be there to find.  
          In the meantime my disease falls back into the manageable, chronic category. If I continue to take the daily medicine I could be fine for many, many months.  I'll have scans again in eight weeks.  But no one is a fool, either.  There are some indescriminate lesions we want to remain boringly, indescriminate. We want them to stay as boring as they are now. 
          I'll watch, yes, I'll be mindful, but I certainly am not qoing to stick around and wait for trouble.  No one can say when the next inevitable progression or drug resistance will occur, when the cone of uncertainly will hover again.  All of us know that cancer can change its mind in a moment, fake out your immune system, and even recruit a few buddies to help its do its dirty work.  We do what we can. Stay rested, eat well, exercise.  Don't give the creeps an inch.
          I felt hope growing yesterday, small, but true, and deep. 

                                                            #     #     #

Tuesday, October 1, 2013

October 2013

It's October 1, 2013. Our government? Lights out.  Our culture? Splashes of pink pop up like crabgrass, from the grocery store aisles to newspaper supplements.

But the truth is out. Those most affected by metastatic breast cancer are not fooled by the government's stonewalling nor are they taken in by a commercialized illusion of cancer. They are busy with other things. Things like living.  Things like dealing with neuropathy or nausea from yesterday afternoon's treatment. Things like tracking down a researcher while juggling a child's after-school schedule, or sharing news about Perjeta, the first neoadjuvant treatment for women whose breast cancer tumors express the surface protein HER2-neu (human epidermal growth factor 2), which account for perhaps 20 percent of the 160,000 new cases of breast cancer expected this year. Things like researching second generation sequencing and asking about the differences between genomic profiling and chemo-sensitivity testing. These are just some of the things people with metastatic disease do. Some are preparing for palliative radiation therapy, a new round of chemo, others are returning home with drains and pain medicine, another has just entered hospice care. Every year approximately 40,000 die of metastatic, not primary, breast cancer. That comes to 1,000 women every day.

Everyone is changed. Our shared humanity ties us together in a sacred space.

Two weeks ago I attended the Metatstatic Breast Cancer Network's annual conference that was held in conjunction with the MD Anderson Cancer Center in Houston. There Don S. Dizon, MD of Massachusetts General Hospital and frequent ASCO Connection contributor, presented a perspective  on living with metastatic breast cancer that didn't as much resonate as detonate. That's because the words typically associated with metastatic disease aren't of the back-slapping hey, make my day variety.  In oncology corridors the frequent phrases are incurable, progressive, chronic and relapsing to the frequently repeated "many live well a long time."  

With Don S. Dizon at MBCN's Annual
Conference in Houston 9/21/2013.

In the first weeks following my metastatic diagnosis I frequently deconstructed "many," "live well" and "long time." How was many was many? Greater than 70 percent of women live a long time? 60 percent? I gnawed on my own chances.  I had little blobs of cancer in a lot of places, a tad more difficult than one big blob that could be nixed out with a scalpel or a jolt of radation. Listen, someone else's cancer is always cooler than yours.  What about a long time? Was that ten years? How about 11? Twelve sounded magnificent but 13!  Greedy and perhaps unwise. At that point in my own experience acceptance and uncertainty had not yet laid down the essential, parallel tracks through my consciousness, like the smudge of a jet stream against a fall sky.

In fact statistics on metatstatic disease, which uses information gathered from the past to project how you may do in the future, now feel absurd to me. They feel inaccurate and out-dated. Social media amplifies the difficult at the expense of underplaying the rhythms of regular life. Many out here in mets country are visually unidentifiable. We don't look sick. Tumor biology and the array of available treatments now, plus the unknown interplay between each woman's individual health, her tumor and reaction to treatment are the final arbiters of health, of lived days. All these intangibles. There are no answers, only guidlelines and decisions formed by each woman's preferences, her perception of the facts, and an oncologist's wisdom and experience in helping to guide the patient and significant other (s) through the process.

"Breast cancer sucks. Metastatic breast cancer sucks even worse," Dizon said. He wasn't swearing for an easy conference chuckle (zesty cancer crowds swear a lot)  but because it led him to what was even more important, "Feel it. Own it. Embrace it. Then move on."

Dizon uses a three-prong approach to make some order out of a disease with so many uncertainties. When oncologists say, "everyone's different," that is the truth.  Give 100 different women Femara and the range  of reported side effects will stagger you.  To keep things simple Dizon recommended three words: pragmaticism, realism and optimism.

A pragmatic approach to metastatic disease, which has stages I'm only now understanding that are not linear but cyclical, simply means being practical. "No one else has to walk in your shoes," he said. "Do what matters.  With metastatic disease it's all about you and those you love."

It's about you and those you love.  It occured to me not to let cancer screw that up, that nothing was that powerful.  "Prepare for an uncertain present, and an even more uncertain future," he said.

For me, that is where both optimism and a realistic approach play. This week I have another set of staging scans. That's the reality. Numbers and digital images may or may change my current prescription. But what Don Dizon brought home was his emphasis that being realistic does not mean ceding your independence or sense of less.  Cancer won't make me less than.
MBCN Conference Shirt Says it all.

I listened, then walked around for a few moments after his address. When you step into a ballroom full of women amd men who have lived with this illness for many years -- its peaks and valleys, months of clear scans, a body's sudden betrayal, an errant tumor marker, a treatment failure -- your perspective once again expands. It can only be so. Your eyes fill with tears.  I know who these women are now. I see them.  Yes, finally, I get it. I know each and every one would divorce themselves from this disease in a heartbeat if it were at all possible  So far it isn't. But I can feel it, own that, and embrace my life.

I wish the same for you.


Some pertinent links for October:

1) The Advanced Breast Cancer Community, Who Are We? 
2) The power of grass roots advocacy & growth:  Metavivor, supporting metastatic breast cancer research 
3) Amazing work: Think Before You Pink
4) Takes no offense from the word no: Terry Arnold, survivor and advocate for Inflammatory Breast Cancer (IBC).  IBC is a rare (approximately 4 percent of all cases) and aggressive form of breast cancer that often appears as a rash and may not appear with a lump. It is frequently misdiagnosed. This is one case where early detection can make a profound difference.

To come:
1) ABC2 - Advanced Breast Cancer Second International Consensus - Novemeber 7 - 9, 2013
2) San Antonio Breast Cancer Symposium -  December 10 - 14, 2013

*   *    *