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.

Joe Biden throughout my year

February 2018

I have been struggling with the loss of my son. People often ask how our family manages, how I even get out of bed in the morning.  I have had physicians over the years declare that we must have a very strong faith, words that sounded curious to me partially because they come from medical folks, but mostly because we are not affiliated with a specific denomination.  

What I can say with certainty is that regardless of your church membership, losing a child will give you spiritual pause. My conversations with God over the past month have been filled with questions and confusion.  I had every confidence in traveling to Houston, that MDA was where we needed to be.  Every sign, every single breadcrumb pointed to Texas.  I prayed throughout the clinical trial process last fall, that if this was not the path that we should be on, to please make it very clear, very obvious, because God knows, I am not so smart. 

While we were in Houston over the holidays, I knew that Brent's road to recovery would be exceptionally difficult.  But neither Brent nor the rest of us have ever been afraid of hard work.  And I kept thinking about the medical flight that showed up, one that I didn't even know that we would need. Brent miraculously got to Houston, and the cells were right there.  His life was in a precarious balance, but our faith was not.   

Since Brent has died, I am haunted, perplexed with what I am supposed to do with this experience. What was the point of his struggle? I haven't been afforded the luxury of being quiet and still, as some have urged, with Lauren finishing up chemotherapy. But I wonder during my quiet moments, why we needed to be in Houston, if not for the cells.

A dear mutant friend of mine offered to take me to see Joe Biden speak in Washington DC. Mills is a nurse with the Navy in charge of executive medicine.  Among other people, she arranged care for Joe Biden's son, Beau and security for the Vice President and his family to visit him at Walter Reed.  As a thank you to his son's caregivers, tickets to this event were offered, and I got to be Mills' +1.  

I have not had time away for myself since Mother's Day, when I went to Sloan Kettering to visit our friend Gabby, while she was dying from breast cancer. So, I carved out some time for self care, and drove to DC on Sunday.  I had hours alone in the car to think, and to cry some. I had conversations with God. While I have no doubt that there is purpose in all of this, I am super curious to know what it is. 

Patience, we have long established, is not my strong suit.

I have followed the progress of the Cancer Moonshot from its announcement. As I would read research developments with my coffee each morning, I would share interesting and exciting things with Brent as he started his day.  We spoke admiringly of how Joe Biden used his painful experience to help others.  The Moonshot investment was incredibly encouraging and it was established just at the time that immunotherapy began to explode.  I really thought that Brent and Lauren would ride the crest of that giant wave. 

Joe Biden is on a book tour, sharing his experience with grief, having lost a son to cancer, a son full of goodness and promise.  Beau was also in a clinical trial, hoping to ride the same crest.  I went to the event thinking that hearing Uncle Joe speak might be helpful to my soul...because while we might seem like very different people, I could certainly relate to his disappointment.   

When we got to the venue, Mills revealed that we had the opportunity to go to a 'meet and greet' where you can get your photo taken with the Vice President.  I slipped a photo of Brent and Lauren out of my purse, because I wanted to share with him how much the work that he does has mattered to us.  I struggled emotionally as we approached, and my dear friend introduced us. I could hardly speak for my overwhelming emotions.

When Joe Biden learned that Brent had recently died, and that Lauren was in treatment, the meet and greet line abruptly halted.  He wrapped his arms around me and told me that he truly understood what I was going through, having lost two children. He murmured kind words and assured me that I would get through this.  He held my hands in both of his and looked at me with eyes that I recognized...ones filled with understanding, and deep with grief.  Mine were filled with tears, so it was a little blurry.  

He called over to his assistant and asked that I be given his personal cell phone number--and Mills's eyes widened. The Vice President said that he wanted me to call him if I needed anything, even just to talk. It was rather surreal, thinking about how often our family discussed the important work that this man was doing.  But at the end of the day, Joe Biden is simply a parent who knows what it is like to lose a child.  There is no escaping this.

We took our seats in the theater to listen to the chat between Jay Cohen and the Vice President. As they began to talk about the book, I heard Joe Biden describe meeting me, our loss of Brent, and of Lauren being in treatment.  The book, he said, was written to help folks with loss.  An hour later, Jay Cohen brought our family up again...it was the strangest feeling, sitting there in the audience, anonymous among thousands, yet not anonymous.  

As I drove through the mountains yesterday in particularly bad weather, I thought about what I will talk about when I reach out. (Mills keeps messaging me, urging me to make the call)  I feel a kinship with Joe Biden, in faith, in loss, in determination to do something good with it all.

Uncle Joe should send me his dry cleaning bill, because I think that I might have snotted on his sleeve.

April, 2018

I forgot that I had written this blog post in February- the persistent snow in April feels the same even if other things are much different.  Lauren has finished treatment, but another tumor was removed from her leg.  The pathology was reviewed by MD Anderson, who determined that it was osteosarcoma, although this is a most unusual picture of metastatic disease. I waited anxiously during her PET scan, furiously playing words with friends and looking at my phone for distraction.

I couldn't pray in that moment, feeling overwhelmed by all that we have gone through over the past six years, and especially the events of the past six months.  I was done petitioning God for guidance.  I asked for no breadcrumbs.  I was sort of throwing the bullshit card because, well, we needed a break, and clearly we weren't getting it.

It was then that an email response arrived from Biden's Cancer Initiative, suggesting a couple of advocacy groups that I might work with.  That seemed like a rather big breadcrumb.  And while I still could not pray, I did make a promise:  I will do the work.

Lauren's PET was completely negative.  Her lungs were clear. It was an isolated met in her skin, which is absolutely not how this disease works.  It is unsettling to have a child who does not follow conventions and rules.  I think that it is unsettling for physicians as well.



June, 2018

I return to this story of Mills and Joe Biden.  

I went to Mill's retirement party over the weekend, which was sort of like going to a wedding without a groom. I should mention that this is the first time that I have been in a large group where people don't already know our story. Socializing is kind of awkward.  

"How do you know Jennifer?  Did you go to college with her?  Are you in the Navy?"   Different shades of the truth always lead to the same end:  I am a mutant friend. We met online in a support group.  Mills is an amazing cancer friend. LFS.  

Follow up question--so you have had cancer then?  Nope.  Sigh.  My kids.

Inevitable follow, to the follow up question--How many children do you have?  This feels like a trap, a trick question.  I have four.  Two affected.  One died.  It is a party, why am I talking about this?  There were several non-cancer-y guests who went on to share some pretty cancery stories with me, which somehow made it less uncomfortable.  We talked about the challenges of illness, to be sure, but also the good that can come after loss. 

I am keeping that promise that I made, and am doing the work.

To my credit, I do not cry during this retirement party.  At the pre-party, the night before, I met Mill's mother, who has lost both her husband and son to cancer. The majority of our 'mutant posse' was there, helping me to spill some wine and tears.  Plenty of both.  

But at the retirement party, I could focus on celebrating my friendship with Mills and my other dear friends there, rather than how sad I am about Brent and our friend Gabby who died from breast cancer last summer.  There was a whole lot of laughter, which I know honors both of them. 

Back at home, my brother shared our story with a friend of his, who runs Senator Sherrod Brown's campaign operations for Medina County.  He called me up out of the blue to offer tickets to a fundraising event.  Joe Biden would be speaking at the dinner.   

I very much wanted Lauren to meet the Vice President, and picked her up from Flying Horse Farms oncology camp a day early.  I was stunned that the Vice President remembered me, months later, as I came up to introduce Lauren. (This is an amazing gift that politicians have) Ever kind and gracious, he offered encouragement to Lauren, insisting on a photo of just the two of them. 

Neither one take a bad photo.

December, 2018 

I have been mentally stuck, not writing very much.  Our long year of grieving is coming to a close. I miss my son, but am channeling that energy, working to change the things that did not serve him well. I have seen some progress in both legislation and policy, something that I am proud to be a small part of, adding my voice to the chorus.  There is power in the collective.

Last night, I read that Joe Biden had another stop on his book tour in Montana.  He was interviewed by Bruce Feiler, who I had skyped with for two hours back in April, as part of his own book project.  He is a best selling author, who also happens to be a 10 year osteosarcoma survivor. He was also a patient of Dr. Healey, the brilliant surgeon who worked tirelessly and successfully to save my son Brent's leg, back when he had his first cancer.  

Missoula Current article

It is odd to me, how the world has become so much smaller, and more interconnected. I am very glad that I am tangled up with the sort of people who are using their time, their talent and the platform that they are afforded, to make good things come of their struggles.  

I am trying to do the same, just fumbling my way through.

Advent: The season of my grief

I wrote in September, anticipating difficult days ahead of me. 

I sensed the inevitable march of time, as trees progressed in their colors in the predictable way. There were warm days when the yellow maples shone bright against a robin egg dome.  I would pause, and whisper my son's name.  I had compulsively planted salvia among my golden daylilies and yellow mums between my blue hydrangea bushes.  I would see Brent's colors everywhere, whether by chance or by design.

There were wonderful opportunities throughout the fall, to be sure: Galas raising money for cancer research, and speaking opportunities for Lauren.  Liv had soccer games; Lauren, cross country meets.  There were birthdays for Lauren and Alex, who are here.  

And for Brent, who is not.

I sat for an hour in my living room one Sunday, watching the wind carry leaves that were still falling as they mixed with snow. I was filled with a feeling of helplessness and dread, incapable of stopping the days to come. That afternoon, I felt incredibly small and insignificant--recognizing that I was unable to control the wind, powerless to corral the many leaves, or stop the snowflakes as they blustered about. Gazing out the window as my cup of coffee went cold, I couldn't even define the season.

I went alone to West Virginia, to spend two days at my friend's cabin.  I tromped in the woods, recognizing that God resides in this natural cathedral.  The towering trees drew my eyes to the gunmetal heavens beyond.  Bronzed oak leaves still clung to branches high above.  I whispered a prayer for my son in this holy place.

The snow began to fall as the darkness came, and Frost's poem began to fill my mind, carrying with it the memory of teaching it to my boys when they were young:  

Whose woods these are I think I know.

His house is in the village though;

He will not see me stopping here

To watch his woods fill up with snow.

My little horse must think it queer 

To stop without a farmhouse near

Between the woods and frozen lake

The darkest evening of the year.

He gives his harness bells a shake

To ask if there is some mistake.

The only other sound's the sweep

Of easy wind and downy flake.

The woods are lovely, dark and deep.

But I have promises to keep,

And miles to go before I sleep, 

And miles to go before I sleep.

I attended a more traditional church last night, the one where we had Brent's services. The music was beautiful, but unfamiliar.  The voices combined like silver waterdrops, which soothed the ragged parts of me.  

Father Walt spoke about Advent season being a time of waiting and promise.  I remembered that last year at this time, I was filled with anxious waiting.  Waiting, but still hopeful.  I wanted to hurry the days along so that Brent could get to his trial. There were so many difficult days last December, opening the tiny door, but not finding the chocolate. Our hope was found in those cells, ones that Brent would never receive. My profound disappointment lead to profound doubt.  

This year, Advent is rather the reverse.  The days are relentless in their advance.  They arrive without me wanting them to, without me being quite ready for them.  Like the leaves and snowflakes swirling, they are blind to my outstretched arms and deaf to my pleas for a pause.

Father Walt also talked about doubt last night. Rather than being a spiritual weakness, he considers doubt to be evidence of faith.  I would agree, and describe them as different sides of the same blade; you cannot experience one without the other. My friend's daughter would have been 21 yesterday, had she lived.  Grief, we have decided, is evidence of love.  It comes in equal measure. There is balance in the universe, the yin and the yang.  

This morning, the leaves are not gone, but buried under a thin layer of snow.  More is steadily falling. The advent season is here. 

But I have promises to keep.
And miles to go before I sleep.