Jose Baselga

We are all human-and even the greatest among us cannot escape this fact.  Hubris or humanness is the downfall of many who begin with the noblest of intentions. I have had noble intentions.  I am constantly questioning my own human failings.

Jose Baselga is a researcher-physician who has achieved great things and brought about enormous positive impact to the world.  He is credited with the development of Herceptin, a game changing drug for women with HER2 positive breast cancer, which also has applications in other HER2 positive cancers. He has done enormous good for countless people.

I met Dr. Baselga a few years ago while visiting my dear friend Gabby, who had metastatic breast cancer.  I am responsible for her seeing him, actually. I had read about some work that he was doing in cancer genetics in 2013, and because she lived near to NYC, suggested to her that she seek out his opinion.  At the time, I was not aware that he was Physician in Chief for Memorial Sloan-Kettering, nor the depth of his influence. I simply read about a physician who was focused in Gabby’s particular flavor of cancer.  She had arrived to point of medical complication that we both understood and agreed upon: There is time to follow protocol, and there is a time to be with those who write the protocols. I will never forget her squeals of delight on the phone when Dr. Baselga accepted her as a patient.

Years later, I shuttled with Gabby through Manhattan to her various appointments in different parts of the city. MSKCC has not had the luxury of contiguous space for expansion like some other cancer hospitals.  Their growth has been accomplished via satellite buildings scattered across the crowded city, similar to the metastatic disease that they treat. Our long day ended with her appointment with Dr. Baselga. He was warm, encouraging, open to research ideas and collaboration, exactly as he came across in video clips that I had seen.  I have to admit that I really liked him.

As Gabby’s disease progressed, I never doubted that she was in good hands.  If there was anyone who would know of the latest scientific ideas out in the breast cancer world, it was Jose Baselga. He was part of Biden’s Moonshot Blue Ribbon Panel.  He served as president for the American Academy for Cancer Research. He was a cancer darling, combining research, PR, industry and policy. We cheered and celebrated whenever we saw photos of him with our other favorites, because we are cancer groupies.  And Gabby was being cared for by a rock star.

I fully trusted that Baselga was the best person to care for my friend. She loved him, and had complete confidence in him.

Like Brent, Gabby was hoping to ride the wave of progress in cancer, but recognized that it was not going to be an easy path. In 2016, she was doing very poorly.  Her friends surprised her and flew in from across the country to lift her spirits before Christmas while she was inpatient at MSKCC. It was a magical weekend, one she dubbed “The Mutants take Manhattan.”  We laughed often and inappropriately. Gabby insisted on taking a photo of five of us with LFS in radiation. We declared that we had more fun than should be allowed in a cancer center.

In this photo, there are over two dozen cancers represented.  There is a very good reason that we are researcher groupies.

  

Gabby faltered and then rallied, over and over. I visited her at Memorial Sloan Kettering after Mother’s Day 2017. I had planned to return after completing a 100 mile bike ride in New York to support immunotherapy research.  But Gabby died on June 2, with her sister by her side.

By this point, I was focused on my own two children and their very serious medical concerns, which would end in both of them having cancer again.  I couldn’t fully stop to consider the loss of my friend. I had to come up with ideas for our own problems.

Our situation intensified.  We traveled for options and clung to hope.  My son died. My daughter was found with metastatic disease.  I lost another dear friend to cancer. These are spare sentences, simple statements.  But they cover complex events and equally complicated emotional responses. It has been an exceptionally difficult year.

In September, I read a NY Times piece that revealed that Jose Baselga had failed to declare conflict of interest and ties to industry in dozens of research articles that were published.  He had received payments from pharmaceutical companies that he was partnered with on drug development projects. Shortly after this revelation, he stepped down from his position at MSKCC, and left the board of Bristol Myers Squibb.  I would include the following articles, in case you are not familiar with it.

Tom Sullivan piece

Propublica piece

While the average person, and certainly anyone distrustful of Big Pharma, would be blown away about the size of the payments, there is nothing illegal about receiving compensation. I don’t actually have a problem with researchers benefiting financially from the development of the ideas that they have discovered. Partnership between academia and industry is so important, especially for advances in cancer.  It is difficult to measure the impact of Herceptin alone.

Baselga is reported to have co-authored 178 scientific articles since 2013, an indication of a prolific researcher.  I recognize that oftentimes contributions are uneven among the listed authors, and the conclusions of an article are not universally agreed upon. Nonetheless, Baselga failed to declare his relationships with industry to these scholarly journals, even if he might have had minor role in the work. His comments and conclusions, as an influential researcher, can sway markets. Transparency regarding his potential financial benefit is paramount to maintaining his integrity.  

They are amending these articles to reflect his potential conflict of interest, fixing these mistakes in the journals.

But the greater damage from his omission is one of perception, which is not as easily mended as the record. There are those in the research world who are questioning the validity of his data, a whole body of work, because he failed to disclose his conflict of interest. Others suggest that financial gain might have influenced Baselga's conclusions, and every public utterance is being combed through. Some, even friends of mine, question if financial gain may have influenced his clinical advice toward patients like Gabby. I have no way of knowing if the omission stemmed from Baselga’s hubris or sloppiness, but neither are acceptable, particularly in a leader.  

The reputation of an institution and the trust of the public in the research system is far bigger than one researcher, however gifted.  A foundation of integrity is what medicine resides upon, as well as the tenant that patient care remains the first and foremost priority. This is why Baselga's departure from MSKCC was swift and complete.

I have long been playing the “What If’ game when it comes to my decisions and choices regarding my son Brent's care. Since reading these reports, I have begun questioning my failure to encourage my friend to seek other opinions and consider interesting clinical trials that might have been helpful. I recognize that this is a normal and perhaps unavoidable part of the grieving process, but I have moments where I question if I was enough. Did I serve her well?

The ripples of our actions and our omissions travel far. I spent only half an hour speaking with Jose Baselga, but it was an entirely positive and engaging conversation. My friend loved and trusted him unquestioningly. His sins of omission are most certainly haunting him today. I am going to replay the clear affection that he had for Gabby in my mind, and believe that I should not also be haunted, having put my trust in him.

I pray for redemption.

Pediatric cancer, LFS style

September is pediatric cancer awareness month, something that we have quite a bit of experience with, thanks to LFS.

With many inherited cancer predisposition syndromes, like BRCA, there is an ethical debate about testing children, who are unlikely to develop cancer until later in life. With Li-Fraumeni Syndrome (LFS), half of all cancers occur in childhood, so there is a real benefit to testing and screening minors. While the emotional burden is heavy, screening can save a child's life.  The Ramers have personal experience with this, having discovered four of the six cancers in my children, not due to concerning symptoms, but because we were armed with the knowledge found in genetic testing.  We were looking for cancer, before it found and overwhelmed us.

Through routine screening, physicians discovered two brain tumors, metastatic melanoma and acute myeloid leukemia in my children over the past five years, prior to any symptoms developing.  Early detection offered the advantage of less complicated brain surgeries for Lauren.  Consequently, my daughter's cancer diagnosis has not slowed her down. Lauren is an honor student in high school, in the marching band and she is currently running cross country.  I am so grateful for these blessings.

My son Brent has had a tougher run with his three cancers.  He has endured well over 30 surgeries, months and months spent in hospital, chemo, radiation, bone marrow transplant, immunotherapy, and epigenetic therapy. He has worked incredibly hard with his doctors, finally achieving a well deserved remission. I am proud to say that he is applying for National Honor Society and has returned to school for the first time in a year and a half. However, had either the melanoma or the AML progressed further, prior to his diagnosis, he might not have had the same treatment options.

Today, we are so grateful and yes, even hopeful.

• The Toronto Protocol, the guide that helped our doctors find these cancer early, was published just months before our diagnosis.  It has made a difference in outcome for us, and it showed up just in time. 
• We are incredibly fortunate in our team at Rainbow Babies and Children's Hospital. I could never properly express how we have been touched by people there who care for our family, and in a way have become part of our family.  I am so grateful that they are willing to think outside of the box.
• We recognize the diligent effort of cancer researchers worldwide who doggedly work to make this condition even more manageable. All advances in oncology benefit the LFS community because we are at higher risk for all forms of cancer.
• I am encouraged by the recommendations of the Cancer Moonshot Blue Ribbon panel which were revealed today.  Among other things, they urge that the research on the drivers of pediatric cancer be intensified and provide strong support for immunotherapy research, which is not DNA toxic. Brent got his latest cancer, a therapy induced AML, from the DNA-toxic chemotherapy he received to treat osteosarcoma. I stewed (kind of bitterly) in that fact for quite some time. We can do better, and will.

This brings hope that our future will be brighter than some very dark days that we have experienced. Lauren and Brent have had cancer simultaneously, on two different occasions. In 2011, Lauren had a brain tumor as Brent battled osteosarcoma.  Again in 2015, Lauren headed back to neurosurgery while Brent did chemotherapy for leukemia, preparing for bone marrow transplant with his brother Alex as his donor. Twice within a month, the Ramers had two rooms on the pediatric oncology floor, which sounds completely ridiculous.

This is pediatric cancer LFS style in its current state.  But I know that working together, it will get better. I am really looking forward to helping with that work.

Carry on Baggage

The airplane was crowded.

Travel out of Newwark was complicated by a fire in the B terminal the night before and snowfall in the midwest.  I patiently worked my way through the plane, locating my seat by the window.  As I settled in and pulled out my book, the man next to me inquired if I often traveled on American Airlines.  He was looking for a way to plug in his phone.  My companion proved to be quite chatty, unusual in an age when most travelers bury themselves in their electronics. Maybe this interaction was fueled by desperation, stemming from his dead electronic.

My head was full, traveling last minute to surprise Gabby for her birthday.  Her friends had organized a dinner in the city after she met with Intervention Radiology at MSKCC, to map out her next biopsy. She battles stage 4 breast cancer and as a mutant, there was suspicion for lymphoma in addition to metastatic breast cancer. Double primary is a tough road, one that Brent has flirted with. It is a daunting path that other friends of mine have been on, and successfully navigated.  But it is sure nice to have company.  

The mutants came for me in January, when Brent first relapsed.  I am glad to be the friend who shows up for once.  So many of my relationships feel lopsided lately. I always seem to be the one needing support.  Cancer will do this I suppose, but within the mutant community, it somehow feels more balanced.

I tried to have a normal conversation with my fellow traveler, which takes cancer off of the table for a subject.  I found this to be more difficult than I imagined over the two hour flight.  I have not been in 'polite society' for some time.  Answering simple questions has become difficult, and speaking without mentioning cancer now boarders on dishonest.

What brings you to NYC?  "I was visiting a friend for her birthday."  This doesn't begin to explain how wonderful it was to surprise Gabby.  It doesn't address how much I needed to step away from the madness of pediatric hospital life, and pour out my soul to folks that really truly understand. It was a last minute decision which was only possible because my son's PET MRI and bone marrow biopsy were mostly clear.

Do you work?   No.  (My new answer will be:  "I am a project manager working with physicians, researchers and others within the medical industry."  I will be sure to mention that I do this work pro-bono)

Newark/La Guardia/JFK?  It was awkward to indicate that I usually fly into Teeterboro or White Plains (which are small, corporate airports) when I travel to NYC.  I had just indicated that I do not work.  Angel Flight is a wonderful and generous organization that provided our travel for Brent's care at Memorial Sloan Kettering Cancer Center. I was trying not to mention cancer.  I recognized that I was not making sense to this man.

We chatted almost exclusively about parenting, and my oldest son who is going off to college next year.  I became uncomfortably aware that increasingly, it sounded like I had a favorite child. "You have raised a son that you have reason to be proud of."  I am proud of all of my kids, but without mentioning cancer, half of them are really tough to talk about.

As we touched down in Chicago, I turned on my phone.  I saw a posting from a mutant friend who is in a clinical trial in Europe.  She has a similar tumor to the kind that Lauren has.  After being desperately ill last summer, spending over a week in a coma, my friend rallied and entered a clinical trial. She failed on her first one but entered a second trial. I read her happy news, that both of her brain tumors are shrinking.

I looked out the airplane window as we taxied and wept, not just for my friend, but for my daughter. I find comfort reading about new treatments which are more effective and less toxic, hoping to never need them. We are currently looking at a surgical trial for Lauren, using glowing tumor paint, derived from scorpion venom. For real.

They announced that our flight would be delayed for fifteen minutes more on the tarmac. Unable to contain myself any longer, I turned to my new friend Frank and shared the encouraging news from Europe, and in a thumbnail, how it relates to my other children.  As we finally parted ways in the terminal, I hugged this bewildered stranger, who promised to pray for my family.

At the end of the day, I suppose that if I am going to make sense to people at all, I will have to talk about cancer, even in polite company.  Like it or not, it has become part of who I am.

Small, focused moments

When my boys were just toddlers, I began keeping a journal, each day listing out the blessings and small bits of beauty that I encountered.  It was a way to carve out moments of reflection at a point when I thought that my life was busy. Having three children under the age of five sounds like a restful vacation from my current perspective.  But for years,  I would conscientiously jot down the moments that spoke to me, the bits of joy found in my full, but simple days.

Keeping a gratitude journal was a habit that has fortunately become internalized for me, because I haven't written in one for years now.  My days have become fuller with more children, busier with cancer and more complicated by LFS.  But these coping mechanisms and strategies that I practiced so long ago are fully engrafted.  As I walk though this life, I generally focus on what we are given and seek out the good.

Unfortunately, cancer has made an unwelcome reappearance for the Ramers, with AML returning a few weeks ago to my son Brent's lymph nodes. We learned just yesterday that Lauren's brain tumor might be back.  Neither of these things are easy, nor good.

But I remain aware of the kindness that surrounds us every day: the smiles of strangers in the hospital, the comfort found when we are home together, the encouraging words and support of friends.  I am keenly aware of each these things in the moment that they happen, and I recount them during the times that I struggle.

I focus on the things in our immediate situation that are encouraging.  While still very tired, Brent is feeling better than he has in a long time, free of pain, not requiring transfusions and safer from infection. Lauren has no troubling symptoms and can go to school.  We are all at home, which was not the case for over 200 days spent in the hospital last year.  Being home is nothing that we ever take for granted.

I find strength in hope.  The efforts of scientists and researchers have brought new therapies to cancer at an unprecedented rate.  I read press releases from many institutions each day, knowing that these advances might be directly relevant to our children.  I read about the Cancer Moon Shot, heartened and hopeful about this commitment, even while we learned that Brent had relapsed.

I pray.  For strength, for wisdom, for breadcrumbs of guidance, for health.  I have often been told that God does not give you more than you can handle.  God and I have talked extensively about His rather overblown opinion of us in this regard. There is no sacrilege found here.  I firmly believe that God would not have given me snark, if I wasn't supposed to use it as a coping mechanism.

And while God may have given us a bit more than we can handle on our own, He does send help to us. There are countless individuals and organizations that support families like ours who face such challenges.  We have compassionate physicians and nurses, who I know with absolute certainty, carry our troubles home with them. I recognize that there are more people praying for our family than I could ever imagine. We are not alone.

We each do the best that we can with the tools that we are given.  I try to focus on the blessings we are afforded. In all honesty, I do not always succeed.  However, this would be my best answer to the frequent look of mixed horror and bewilderment that we get from people as they say, "I simply don't know how you do it."

We do it one moment and one choice at a time, just like everyone else. I am determined to live in a spirit of gratitude and love.

This morning, I braided my nearly-eight-year-old daughter's hair and walked her to the bus stop. I listened to her chatter and the sounds of the birds.  I think they were singing spring songs, despite the chill.  It was truly beautiful.  It was enough, in that moment.

We are so very grateful for your prayers.

Cancer Nesting

I had finished a blog for Living LFS about how we watch the shadows, and wonder about the sharks, always battling those closest to the boat.  I thought that I would step up my game a bit, and include a stock photo of some sharks with the post, which would require tech back up from my husband or kids.

The phone rang as Dan got home, our oncologist calling with the results of the next phase of the pathology.  Suddenly, it became clear that my kid had slipped into the water. Brent is now swimming with the sharks.  The best chance that we have, is for one of my other children to help him back into the boat. He needs a bone marrow transplant to cure his latest cancer.

They are all children.

I have been busy for the past week on multiple fronts.

Medically, there was the trip on St. Patrick's Day for our family.  We went to the hospital to be tested, all hoping that one of us is the lucky Perfect Match, and can be a donor for Brent.  I saw many touching photos that day, of oncology nurses with shaved heads, raising money for pediatric cancer research via St. Baldrick's.

We had a meeting after tumor board with the transplant team, to learn about what is involved in the transplant process, which is daunting all on its own.  It also happens to be littered with potential for complications.

I have been doing the things that I know, as a veteran of four previous tours of cancer duty:  Talking to folks at each of the schools; Contacting my social worker, my case managers, the insurance company;  Notifying those who I made commitments to, knowing that I will not be able to follow through; Canceling my few cleaning clients, which had been a feeble attempt at finding work; Cutting back on interests outside of my family.  I did this all understanding that it is necessary, but not without regrets. It was not always accomplished without tears.

I reached out to some researchers that I know.  I am using every tool at my disposal.  I am following the breadcrumbs that God puts in my path.  I pray.  A lot.

I have not yet been able to open the binder we recieved entitled "A guide to your child's transplant."  My volunteer work at the hospital, which I am forced to leave behind, asked for parent input in creating guides just like this.

Over the weekend, as Brent went to the Cav's game courtesy of a dear friend, and spent time with his buddies, I cleaned, organized, and tidied...both my house and my life. Like at the end of my pregnancies, I need to have things in order before we become indisposed. I am cancer nesting.

I have a quiet in me that I cannot explain, but one that am grateful for.  We wait to learn of a match.

We pray.

We wait.

We pray some more.

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.

It is (frequently) New Year

I imagine that there a host of people out there today, making resolutions, starting fresh, starting over.  There is something about a brand new calendar on the wall that suggests that anything is possible and almost begs for change, for our better selves to make a showing.  It is a day for hope.


I have never been one for making new year resolutions, always thinking that when you see a change that needs to be made, today is the day to do it, regardless of how far into the month we are.  But I rarely do things in a traditional way anymore.


As an example, I cite our advent season. It read a bit different than most, being dictated by the slow but steady progression that we know all too well, of gathering information about cancer.


December opened with big scans on both kids, followed by the delay as inconclusive, but concerning results dribbled in.  Brent required a PET scan in week two, again, with requisite wait for interpretation and results.  Tumor board, surgery and the excruciating wait for pathology took up the remainder of our pre- holiday time.


Throughout the month I deliberately committed to further responsibilities as a volunteer, really hoping that I would be able to fulfill those obligations.  I continued to look for work, despite the travel to Houston or New York City that might have been required for cancer.  Instead of baking cookies, I filled my freezer with pans of lasagna.  Instead of sending out Christmas cards, I cleaned out and organized closets. I tried to be prepared, to be able to run a household from afar.  And I waited for each slow step.


It wasn't until we began our Christmas celebrations that I realized the heaviness I had been carrying around with me all month.  I am in great LFS shape, as I like to say, because I am far too familiar with the hospital process, the slow measured steps of cancer.  I did not get ahead of myself, as I did last January, trying in futility,  to push things along.  This time, I simply waited.  I knew who I would contact in case of advancing disease for the melanoma.  Or recurrent disease for the osteosarcoma.  I didn't even research the lymphoma.


I recognized the things that I could control, which wasn't much.


I do not in any way want to minimize the joy, the gratitude and the celebration that came on the Ramer's non-traditional Christmas Eve, when we learned that no malignancy of any sort was found in the suspicious lymph node that they removed from Brent.  There was a lot of whooping it up.  There was dancing.


And wine.


Believe me when I tell you that there is no greater gift than the health of your child.  These tidings of great gladness arrived three years to the day of when we learned about Lauren's brain tumor.  I sort of consider this to be a good omen, replacing the negative association that we have long held with December 22.


So, despite an overnight trip to the hospital on Christmas day for post surgical drain issues, we have had a lovely holiday season.  And it would appear that clock starts over again for me, where my time is somewhat my own, free to pursue the things that I would like, uninhibited by considerations relative to cancer.. With LFS, we are like planet running on a tighter orbit, traveling around the sun every three months instead of every twelve. New Year's resolutions can come more often for us than for the rest of the world. 


My resolution is to replace all the days and dates that have weighed me down, experiencing new and joyful things that obliterate the darkness and worry...every three months...until forever.