What doesn't kill you...

I spent nearly two months in the hospital this year with Brent, who is thankfully regaining his strength every day. I have things to work out in my mind.  I really need to work out my muscles as well.  So, I have been preparing for a hundred mile bike ride on June 10th in support of immunotherapy.  I have been writing a bit as I train with my sister and son Alex, both who are joining me in the fundraising event. I thought this entry was worth sharing.

5/10 (27 miles)

It was a lighter day for us after the long ride, really just trying to keep our legs loose.  

I thought, with gratitude, about the scientific community working on cancer.  A number of people have asked me why I am biking for Cancer Research Institute, when we have historically been active in pediatric focused efforts, like Kick-It.   We still support childhood cancer research, which is seriously underfunded.  But as I pedaled along, I thought about Brent and his gauntlet-run through oncology over the past six years and the role that immunotherapy has played.  

Throughout, I have prayed for specific things--for blood counts to rise, for pain to be avoided, for healing to happen.  I prayed all the time.  But often, I simply prayed for guidance.  "Show me what to do, and I will do it."  

Back to immunotherapy.  Brent first had osteosarcoma in 2011, a huge pelvic tumor.  After he had his limb preserving surgery at MSKCC, he was plagued by infection, something that required several other surgeries, further hospitalizations and delays of his chemo, all really bad stuff.  A few months after Brent completed this regimen, I read an article about how folks with infection issues suffered less sarcoma relapse.  I always try to find an upside in our struggles and remember sharing this bit of information with our docs. "Good thing we were dogged with infection."  They were fairly horrified.  The correlation was there, but calling infection good, is like telling a bride that rain on your wedding day is considered good luck--cold comfort when a weather event ranked somewhere between a deluge and a hurricane blows over the reception tent.

We marched onward...and discovered Brent had metastatic melanoma. Curious about how common this diagnosis is in LFS, and desperately seeking treatment ideas, I shared Brent's struggle in Living LFS's online support group. A friend messaged me and offered to text a family friend about Brent, someone who "works in melanoma." Her family friend was Jim Allison, who is now a stadium filling rock star in cancer immunotherapy. Back then, he recommended doing Interferon just as our local team had suggested.  But if it should fail, he recommended that we consult Jedd Wolchok at MSKCC, a former colleague of his. Brent did almost a year of interferon, which is an immunotherapy drug.  Melanoma, thankfully did not return. But as a result, I began following immunotherapy researchers and reading as much as I could about this emerging field.

The most exciting thing for me about immunotherapy, is that it does not rely on p53 function to eradicate cancer.  With Li-Fraumeni Syndrome, Lauren and Brent have only one effective copy of p53. The work of detecting and shutting down a faulty or damaged cell is seriously impaired, which is why my children are so prone to getting cancer in the first place. If the immune system could be harnessed to detect and eradicate cancer, it would bypass a weakened cellular mechanism and not do further damage to that already sketchy process, as chemo and radiation are prone to do, quite indiscriminately.

Brent's melanoma treatment was interrupted by just this sort of collateral damage. He developed treatment induced AML, an aggressive leukemia that requires bone marrow transplant. We were fortunate to have a perfect sibling match and we spent the better part of 2015 in the hospital, fighting to just get to transplant and then going through that arduous process. (Lauren threw a recurrent brain tumor into our summer schedule. It is a ridiculous life with LFS.)  

Brent relapsed almost immediately with AML.  I prayed for health and ideas.  He became desperately ill that autumn, and his oncology team at Rainbow Babies and Children's Hospital tried to just get him home for Christmas. They proposed using the power of Alex's transplanted immune system, boosted with extra T cells, unchecked by any protective immunosuppression.  It was dangerous and uncharted and shockingly, it worked beyond their hopes, although Brent didn't achieve a complete response. We tried epigenetic therapy through the spring, trying to bridge Brent to a trial.   

As I pedaled along, absorbed with the twists and turns and how I came to be training for 100 miles in support of immunotherapy, I wondered if God speaks through Mick Jagger, because the Rolling Stones were stuck in my head--"You can't always get what you want/ but if you try sometimes, well you might find/ you get what you need." Like the persistent infection that nipped at his heels during osteosarcoma, Brent seems to have benefited from a stunningly aggressive case of necrotizing fasciitiis (which is flesh eating bacteria-I return to the notion that we live an absurdly unbelievable life)  This infection nearly killed him last summer.  No one would prescribe such a thing, but in hindsight, there may have been an upside: The giant immune response required for Brent to overcome sepsis seems to have finished off his leukemia. Certainly not what we wanted, but perhaps this was what Brent needed.

Brent lived an incarnation of the phrase "What doesn't kill you makes you stronger"  Trust me, administering a drug like nivolumab would be a far preferable way to achieve this immune response, than dealing with the surgical after-effects of this devastating infection. I support immunotherapy research to help scientists try to understand the mechanisms of the immune system and develop more refined therapies than what Brent has endured.  The immune system may be powerful, but current therapies are bluntly applied, unevenly effective and not deeply understood. CRI helps scientists advance this promising new field.

We will never know for sure, but as I look over the explanations for how Brent has survived these malignancies, science would point to the power of the immune system being a significant factor, although I do not question the power of prayer: a combination therapy.  

Brent gratefully remains in remission.

If you would like to help me support this research, click on the link below.  Many thanks!

http://www.a2c.org/RamerNation

Blurred lines

I recently applied for a job at the FDA, one that I never dreamed that I would want. In truth, it is a position that I probably will not get. But the Ramers try not worry about odds, and just go for it. The application asked about my advocacy experience.

My first thought was "Damn, I just had plans to go to Washington DC for that pediatric cancer rally via Truth 365 with Lauren for her birthday." Truth 365 is an advocacy group that works to change the travesty found in only 4% of the NCI research budget going to pediatrics.  I do recognize that this trip might sound like a crappy gift for the average fourteen year old girl.  The only thing crappier? That I stood Lauren up for her birthday cancer rally because Brent had surgery and a five day admission to the hospital.

It was a stellar weekend, all the way around.

But, back to my application.  I tried to remember official ways that I have represented the RamerNation.  It occurs to me that our core community is really hard to identify. Is it found in organizations that support pediatric cancer research, like Flashes of Hope or Alex's Lemonade Stand? Should I continue with non-profits focused our genetic problem, like Living LFS? Should my effort be directed toward organizations serving people with specific cancers that we have experience with, like the Leukemia and Lymphoma Society or Be The Match? The Sarcoma Alliance? Perhaps a more general cancer organization like Stand Up to Cancer, or the American Cancer Society would be more appropriate because apparently, the Ramers have an 'equal opportunity' approach when it comes to developing malignancies. But I also serve on Family Advisory Council at Rainbow Babies and Children's Hospital to address the more immediate practicalities of hospital living, which has nothing to do with cancer whatsoever.

While all of these relate to some facet of our identity and each addresses issues that we care deeply about, no single organization is adequate to represent our family's needs in total.  No official group has a platform sufficient for all that I have to say. Like an awkward teen, I joined a bunch of cancer clubs, trying to find where I best fit, and where I might be a clear voice for my children.

Rather than finding my place in a chorus, I find that I am more suited to singing solo.

I sought out our elected officials while in Washington DC in May, to speak about how children with limited treatment options ought to have access to adult clinical trials. I didn't represent any organization officially.  I was just a mom, sharing our personal experience, and our needs.

I recently attended Cancer Research Institute's Patient Summit in NYC, dedicated to immunotherapy, something that I have been following with great interest for years. Researchers are developing safer and increasingly more effective approaches to cancer, harnessing the immune system to treat various malignancies. Traditional chemotherapy and radiation are genotoxic.  With LFS, we have rather questionable DNA to begin with and don't need to add insult to that injury.  I spoke with researchers, of course mentioning LFS, the array of diagnoses that the RamerNation has faced, as well as the potential of immunotherapy for children. Advocacy lines in these situations can seem blurred.

A few days later, I went with my friend to her oncology appointment at Memorial Sloan Kettering, and witnessed in someone else how the lines become blurred for the greater good. Gabby advocated for herself as her treatment plan was sorted out, for her local community as changes in hospital formulary were enacted because of her efforts, and for the overall LFS community as her physician outlined a potential research study for early detection of cancer. This all occurred quite informally, while Gabby sat on an exam table in a hospital gown. As she talked with her oncologist, who is an influential doctor in an influential institution, I saw her passion, and heard her speak for our community, echoing a sentiment that we have held privately for years. "If you fix mutants, you fix cancer."

It was powerful, but nothing that you can easily put on a resume.

Lucky for me, I don't actually need a resume for the position that I currently have: I advocate for my children and for the various communities that they belong to.  Advocacy doesn't require rallies, titles or fanfare. Like Gabby and so many folks, I just see what would be helpful, and talk with those who could make these things happen.

Visual art and the impact of seeing it all

As another load of snow landed at my house overnight, I am not entirely sad that I cannot leave today.  I am waiting for a delivery of Interferon, which is horrendously expensive and requires a signature, despite the fact that there is no street value to these drugs.  As the snow is piled up waist deep along the sidewalks, house arrest is not exactly viewed as a punishment.


It is a pause that I am having today.  I am taking a break from the work that I have been doing, both at the hospital, as well as for our non-profit.  I am reasonably caught up on laundry and feel indulgent this morning, letting the words leak out of my head.


A few weeks ago, I began an art project, which evolved into a sort of art therapy. With a bit of medical quiet, I took a visual journaling class with Lauren, as a special time to connect with her.  I have been feeling pressure, to cram in these sorts of good things, to prepare the kids for college, to do the work that I feel passionately about, to find a paying job... The list seems endless and overwhelming sometimes.  Cancer has required a great deal of our attention, and it has not often been out of view, or for very long, evidenced by our Christmas march through radiology and surgery.


To be honest, this pressure and constant medical interruption is incredibly frustrating.  Even in the 'quiet,' there is much that needs to be arranged, planned and organized.  I am not complaining about the quiet, believe me, but I think that few understand what is involved. 


Anyway, I appreciate art, but generally consider it a spectator sport.  Dan is visually imaginative, and I generally defer to his efforts in photography, graphics and every manner of design.  I have no regrets about this, because his creativity is no match to mine.  However, after taking this art class with Lauren, I was inspired.  I explained to her that I was going to make a collage of sorts, to represent the past several years of our life in the rabbit hole--the good, the bad and the ugly.  I have things that are fair representation of each: x-rays, pathology reports, photos with friends, words of support.  There are things that represent both the hardship, as well as the help.


Not quite understanding, Lauren asked if I was going to cover a canvas in glue and dump the contents of my hospital suitcase onto it.  Well, sort of.  I had a box of 'cancer memorabilia,' for lack of a better term.


I worked through the box, looking over the various items, each that triggered specific memories for me.  As I spread it all out, and selected the most important things, the sheer number of visual representations of our story kind of hit me.  I went out and bought a second canvas. 


Evaluating the different bits, I was struck by how dark some points were.  And how lonely. And how filled with despair.  But that in those same moments, encouraging words would come, or a friendly face would appear.  In our struggle, we found connection. From our isolation, we found a much bigger world.


I am have been frustrated with our lot of late, because of the ways that cancer and that the realities of LFS hold me back.  I have felt limited, inadequate and unable to be the person that I would like to be, in many, many ways.  It has been hard.


But as I look over my art therapy project, my gaze is drawn to a hand crafted card that Brent's nurse gave to me at our lowest point, when we had two children in the crosshairs of cancer.




What cancer cannot do

Cancer is so limited...

It cannot cripple love.

It cannot shatter hope.

It cannot corrode faith.

It cannot destroy peace.

It cannot kill friendship.

It cannot suppress memories.

It cannot silence courage.

It cannot invade the soul.

It cannot steal eternal life.

It cannot conquer the spirit.

Cancer is so limited.  I really like this. 

And when I notice that the vast majority of the photos around this card are of our smiling family, even when some are bald, or hospitalized, I believe it.  Cancer truly is so limited.  And if cancer is that limited, then maybe I am a bit less limited than I sometimes feel.

Living (and laughing) LFS

The Ramers have terrific support and I could never properly express my gratitude for the folks that have helped us.  However, my friends in Ohio, while always willing to lend an ear, will tell you that there are so many things that they simply cannot understand, relate to or fathom.  Even the parents of children with cancer, who understand the worry and fear, cannot appreciate the breadth of our concerns, because they are limited to one type of cancer. I am not in any way minimizing their worry, but with LFS, we are never done and need to be on alert for every brand of cancer.  This concern is justified by the four cancers that we have dealt with thus far.


The disconnect between our freakish reality and that of the people that we love was terribly isolating.  But this loneliness melted away when I found others with LFS, making friends and finding support from fellow mutants who understood our challenges and had experiences similar to ours.  I bonded with a wonderful group of friends in Boston last year.  We began to feel guilty in a way, for having the fantastic support that comes from meeting one another. 


So, together, we resolved to facilitate gatherings for others, so that they might be as blessed as we have been.


Over the summer, we formed a non-profit Living LFS, which focuses on the way that we are living with a genetic predisposition to cancer.  I would point out that since we met last October, none of our eight board members have been 'medically quiet,' as I like to say, each dealing with chemo, surgery (or both) for themselves or a family member.  Despite facing major surgery in the form of double mastectomy and reconstruction, our secretary DeAnn worked tirelessly to file incorporation paperwork and got our application for non-profit status rolling.  It is an awful lot of paperwork, for the record.


We planned a mutant gathering in Portland, pulling it together in under two months.  DeAnn was ultimately unable to come, being only 10 days post-op, sporting several drains and dealing with a new diagnosis. I think that this truly illustrates what it means, Living LFS.  You work while you can, recognizing that cancer might interrupt and can rob you of the fruits of your labor.  While bitterly disappointed, we push through and carry on. 


This humbles me, inspires me, how these ladies work doggedly in service to others despite their own concerns.


At one point, there were troubles, worries and bumps in the road for me as we formed this organization. I wondered if this was what I was supposed to be doing-- devoting a significant portion of my time to a nonprofit dedicated to patient support, when I personally find so much comfort in research.  I am involved with a number of organizations.  I seek to find a balance between them.


I came to Portland looking for some breadcrumbs and found myself in a bakery--and I do not mean Voodoo Donuts, although those were also very good.  I do know that this is exactly what I am supposed to be doing.


Last week, I had reminded Brent that I would be going out of town.  "Oh, to your cancer conference..."  I argued that it wasn't a cancer conference, evidenced by the fact that I was going, and had never been sick. 


"You are just riding my cancer coattails, mom.  It is cancer by proxy."  I laughed rather hard at that...and throughout the weekend, laughed some more, comfortable with others who understood. This was not an angry gathering, nor one filled with despair.  We are determined, and hopeful. We laugh despite (or because of) our challenges.


We are a vibrant mutant community, and we were blessed to receive more offers of support for Living LFS, folks giving of their time and talent to help their fellow mutant via our infant organization. It was incredibly meaningful and I am very excited to be working together.


I often think that when you are given much, much is expected.  When you do good things with what you have been given, you are granted even more.  I count my blessings every single day.  Hearty laughter with my mutant friends over the weekend was one such blessing.  I will take a second serving of this, any day of the week.

Mutant Mentality

I was walking the dogs with my daughter Lauren, to stretch out her sore muscles from her recent foray into cross country.

We have long been talking about being thoughtful, and developing good habits.  Mostly, these have been tangible or outwardly visible habits:  eating healthy food, exercising our bodies and minds, spending time in service to others, both in our family and in our community.  Like running, it is hard work at first.  But with practice, we do not need to think about these things, as they simply become incorporated into who we are.

Last week, however,  I spoke to Lauren about her mental habits, the ones that go beyond developing an intellectual curiosity (my kids are daily encouraged to read 'something smart' that is not covered by doing homework)  While I can check in with Lauren to see how she understood an article in the newspaper, I cannot as easily see the mental dialogue she has going on.  After she joined cross country this fall, I have gotten a glimpse of a mental muscle that needs stretched and strengthened along with her quads and hammies.

We talked about how on the back stretch of the course, when the sun is hot, the encouraging crowd is sparse and her body begins to rail against the run, her mental dialogue is, unsurprisingly, fairly negative.  She is tired, and sometimes she walks a bit.  I do not mind the walking, for the record.  But we talked about how the thoughts in her head influence her actions in those lonely parts.  In order to get better, to be stronger and to win--not the race overall, but to win the competition, the one that really matters in my opinion is the one in her mind--she needs to be disciplined in her thoughts.

Over time, repeating the affirmations ("I can do this."  "I am getting stronger." "The crowd will be around the bend to encourage me." "There are those ahead of me and those behind--I am not alone") and repeating the motion of taking one step, then another,  both of these things will become habit, not worthy of the monumental effort that is required to accomplish it now. 

Focus on the good, always.  If you focus on a problem, let it be only in order to fix it, otherwise it is wasted energy.

I was reminded of our conversation as I checked in this morning on the LFS support group that I help a friend administer.  A woman from Brazil shared that while her brother tested positive for LFS, he did not consider it a death sentence, because their mother had beaten cancer 5 times.  I thought about how many people in our group have benefitted by sharing our experiences, particularly our successes and the successes of the researchers that we deal with.

Our individual stories may be frightening and overwhelming.  But through this support group over the past year and a half, I have seen a change in the collective mental dialog.  Instead of LFS being considered a death sentence, and one to depressingly bewail, waiting for the next cancer to arrive, there has been a shift, to cautious optimism, with encouragement coming across the internet in the lonely back stretch.  The prevailing theme is one of determination, and hope.  And action.

When we give voice to our fears, we can begin to conquer them.  When we are tired,  tired of cancer, tired of fighting, we can reach out for encouragement. For compassion. For ideas.  For information.  For resources.

We have begun to change the culture, that place in our brains that focused on futility, and despaired of our 'predisposition' to cancer, twisting its meaning to become 'predestination.'  While death will come to all eventually, and cancer is likely to come to us, we are now facing it on our terms.   There are meaningful and effective things to do, both in our personal battles, as well as in our community. 

We are now doing them together.

While every day cannot be a raging success either on the mental or physical front, we are collectively improving on both, becoming stronger and more proactive.  I am proud to be part of this change.  I am grateful to be part of this community, cancer aside.

We are busy Living LFS.


LivingLFS.org