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.

Easter 2018

The screensaver photo on my phone is from last Easter.  I remember that Brent had blessedly begun regenerating skin after a horrific case of GVHD.  He was weaning aggressively from his narcotics.  We were filled with so much hope.  Alex was home from Ann Arbor and we were all together after a long and stressful couple of months in hospital, most of it spent in the PICU.  Lauren was healthy. Life was good.

This year is quieter.  Brent is not here with us.  Alex is in Australia.  We finally found a moment of grace after the escalating cancer concerns of the past month.  Doctors have determined that Lauren has shockingly relapsed with osteosarcoma, but at least she had some reassuring staging last week.  While we have much work in front of us, sorting out a plan and likely returning to Houston for help with these uncharted waters, we are blessedly starting from a good position.  There is no evidence of disease in Lauren's body at the moment.  God willing, it will remain this way. 



Lauren and I have been listening to the Hamilton soundtrack over the past couple of weeks. I think of Brent when we listen, because he and I had always hoped to see this show together, long before it was a smash hit.  We schemed several times to attend with my dear friend Gabby, when Brent had appointments in NYC at Sloan Kettering. A mutant's calendar is hugely unpredictable, and this uncertainty is only compounded by trying to make social plans with another mutant. The planets never quite aligned. Gabby died last summer of metastatic breast cancer just as Brent relapsed with AML and Lauren was diagnosed with osteo.  I miss her tremendously.
 

Hamilton is tenacious, hardworking, outspoken and ambitious.  He yearns for glory in the revolution, even at the risk of martyrdom. There is a line in the musical where Washington sagely warns him, "Dying is easy, young man. Living is harder."  The truth of this statement echoes and reverberates.

Brent and Gabby are both gone now, remarkable individuals who worked incredibly hard to remain among the living, to share their laughter and love.  Living may have been harder for them, but I do know that it was worth it, for both.

Brent's living days were filled with so much activity-doctoring wounds, counting up nutrition, dosing medications and problem solving, day in and day out.  But there was laughter, and there was so much love. It was hard work, his living, but it was hopeful.  It was always worth it.

As helpless we were in witnessing Brent's death and as difficult as it was to plan his funeral with Dan, living these more recent and somewhat emptier days has been much harder in many ways. We trudge through, always trying to honor Brent's struggle and bring about positive change for others.  It is something that we can do.

I attended a living "Stations of the Cross" service on Good Friday with Lauren, the first time that I have been to St Basil's since Brent's funeral. While we are not Catholic, I very much wanted to go to an Easter service there.  I was impressed by how these teenagers, classmates of Lauren and Brent, selected popular secular music to reflect the various challenges that Christ faced on his last day. Lauren was touched by how her peers related the stations of the cross to everyday life, using their own experience and explaining it in their own words.

I wept, each time that Jesus fell.  Lauren quietly passed me tissues, God bless her kind soul. The public display of Christ's struggle, his repeated failures, as well as the kindness and compassion offered by Simon and Veronica really spoke to me. The youth portrayed a very human struggle, and one that I could relate to, drawing any number of analogies. 

Lauren drove us home afterward and I gazed at an enormous full moon out the window, thinking of Brent.  This was the second blue moon of the year.

We decorated eggs when we returned home, a typical RamerNation creative endeavor.  We made some eggs for Alex and Brent, which helped to heal my heart some.

Our family celebrated Easter yesterday, a time of rebirth and renewal. We rejoiced in our moments of beauty. Olivia shared Wordsworth's poem about daffodils.  Lauren sang some songs and played her Uke. The world continued to turn, with Alex having adventures on the other side of it.  Brent, even farther away, will remain with me for all of my days.

We Pedal On

We got to West Point Friday night just in time to pick up our registration packet and drop off our bikes.  I got to meet my first friend from AstraZeneca.  Priscilla was a riot of optimism and enthusiasm, asking to take photos and promising me that we would see each other in the morning. She assured me that we would encourage each other throughout the 100 miles. She did not lie

We had time to grab some delicious pasta dinner, get Dan and the other kids settled into our Airbnb (Dan gets extra points for being the lone driver in the later car) and then go to bed. No late night Cav's watching for this girl--although it seems that they did quite well, even without my attention.

Jamie gets extra chauffeur points for getting up so early to take us to the starting line and a round of team points for getting snazzy custom RamerNation jerseys made for the three of us. The morning weather was mercifully cool. West Point was stunningly beautiful. The course, as advertised, was hilly throughout. I felt great for the first 45 miles.

I met Orlaigh, a woman from Ireland, (actually from the same town that Laurie just returned from) who now lives in Long Island. She was riding 100 to honor her mother, who had breast cancer. I hate cancer, kind of a lot.

I thought a lot about the people who travel with me in spirit. My phone, which carries a fantastic biking playlist from my volleyball girlfriends, dinged text messages of encouragement throughout the race. Jamie, Dan and the kids waited for us at the rest stops and finish line, ever supportive. I saw a ladybug on a flag, a symbol of my friend Gabby. I felt both a rush of grief and a dose of her encouragement, something which always bolstered my confidence. We don't really do anything alone in this life, regardless of how it may appear.

I came to this century ride with Alex (who absolutely killed it, finishing an hour and a half before us) and Laurie (who was announced as the 4th highest individual fundraiser). However, we ended up riding most of the miles alone, only bumping into one other at rest stops, which is how these races tend to work out.

Like a starry sky filled with constellations, there are vast stretches of quiet in between. Throughout the ride, I thought about how Alex was somewhere in front of me and my sister just behind me, connected by invisible bonds.  My husband would be cheering just up ahead. Glimpses of Brent, Lauren and Olivia could sustain me. Jamie often drove by, shouting encouragement through the window.

I met some researchers who had good things to share about their work.  This lifted my spirits as I considered Lauren's current issue. Potential issue, I should correct, because it is not a problem until it is a biopsy confirmed problem. 

I say this kind of a lot, a mutant mantra for mental health.  Because there are lots of worries along the way, which could rob me of today's blessings if I allowed them to dominate my thoughts.  It is difficult mentally to tamp down worry, particularly when I have intimate knowledge of how long and difficult a sarcoma treatment is.  But today is not that day-- which is another handy phrase.

It got hotter in the afternoon, but the folks from CRI did a fantastic job of providing support. There was food, water, Gatorade etc, every 10 miles or so, and the SAG trucks patrolled the routes to make sure that everyone was covered. Laurie struggled at the very beginning and tailed the pack of 100 milers.  She told me that for the first 40 she had her own personal SAG driver, Paul, who insisted that he would not leave her. And he didn't, until she began passing people, and met up with me at mile 55.  It was an extremely well run event.

I biked with Debora, another part of the AstroZeneca team, an ebullient woman who is comfortable hugging a sweaty stranger on a bike. She evoked Gabby's social fearlessness and perpetual optimism.  

In the second half of the ride, the century riders chatted more at the rest stops, encouraging one another, plying pickle juice on those who were cramping and plotting out the distance remaining. Breaking down the miles we had yet to grind out, into smaller more manageable chunks really helped. "Only 12 miles to the next rest stop!"

Around 70 miles in, just after passing a SAG truck, I lost use of my brakes.  Laurie, ever practical, pointed out that I wouldn't need them for at least the next quarter of a mile, which was clearly uphill, so we climbed.  At the top, there happened to be three riders from AstraZeneca who were stopped at the crest. They kindly helped me with what ended up being a simple fix, something that any experienced rider would know how to handle.  A downhill followed, one that was perilous even with functioning brakes. Without their help, I would have had to wait for the SAG truck. It felt somehow prophetic to see how these researcher-riders became directly involved with my plight. 

Laurie and I later worked our way up a ridiculously steep and winding road that hugs the rough rock face of a mountain, with the Hudson River flowing below. We had come down that gloriously scenic hill early in the morning, when our adrenaline was rushing, and our legs were fresh. We did not stop for a photos in our haste. Racing along, I had seen a huge bird take flight and I thought about how extraordinarily beautiful, but fleeting it was. 

As we reached that same peak after a long climb on our late afternoon return, Jamie was waiting there to take our photo, capturing us sweaty and tired. It was still a glorious view. As we posed, a biplane which I can only describe as 'Gabby Yellow' came out of nowhere, passing close, and commanding our attention.  It was perfect.

An exhilarating downhill followed.  However, we did not return through West Point. The course took us instead a different route that involved some hills that Laurie and I neither anticipated nor appreciated. There may have been some swearing. We passed a woman who shouted encouragement to us, telling us that we were only three miles from the finish.

Heartened, we pedaled on.

Two miles later, we read a sign that said '5 Miles To Go.' There was definitely swearing at this point. And murder plotted. Disheartened, but determined, we pedaled on.

   

Finally at the finish, I hugged my family--Alex looking irritatingly well rested--and we cheered Laurie and our new friends in.  Dan bustled us to a massage tent where angels of mercy put their hands on our positively disgusting bodies, encrusted with 100 miles worth of crystalized sweat (sorry to be gross, but it was like sand on my face)  They stretched us and pummeled our muscles. It felt positively amazing and I think this saved me, because believe it or not, I was not sore the next day.

Over $900,000 was raised at the event for immunotherapy research. I know that more will roll in for CRI until Sept 1, when fundraising is finalized. It was an honor to be part of this effort, and I am grateful for every bit of encouragement and support along the way

.

In the morning, I sipped coffee and listened to musical gift from my volleyball friends, a lyrical affirmation of their belief in me. Laurie and I talked about how fortunate we had been in the weather.  On Sunday, it neared 80 degrees by 9am.  Biking in that kind of heat would have been an altogether different sort of challenge.

I was enjoying the beautiful gardens at our airbnb and watching Olivia feed a goose and her four fluffy chicks. It suddenly washed over me that there was nothing left to do, no 100 mile buffer between me and Lauren's surgery. 

This is the next step.

Deep breath.

Heartened, or disheartened, we will pedal on.  We do not do this alone.

Riding 100 miles for the past, present and future

They say that you should have an Elevator Pitch--a point that you would make to a captive audience that lasts the length of an elevator ride.  This makes me imagine folks in the business world lurking at a bank of elevators and carefully slipping in when an important ear should be leaving for the day, speech at the ready.

I am not sure that there are buildings tall enough (or elevators slow enough) to accommodate what I would want to say these days.  I might, however, be able to cover it over the course of a 100 mile bike ride. This is assuming, of course, that I could breathe enough to speak as I pedal uphill.

Tomorrow, I will be driving to West Point, NY.  On Saturday, Alex, Laurie and I will bike in support of Cancer Research Institute which funds immunotherapy studies and trials.  Biking 100 miles will not the biggest event of my week--it is currently ranking 4th--behind the devastating loss of my friend Gabby to metastatic breast cancer, the challenges of finding appropriate treatment for my son Brent's GVHD and the surgery that we are organizing to remove my daughter Lauren's latest cancer concern.  

Biking 100 miles will feel like a vacation.  

I do hope that it will be a 'working vacation,' and that I will have the opportunity to speak to researchers about the things that they are learning, because advances in immunotherapy would impact all three of the things that have dominated my time, emotion and attention this week. 

When life throws you challenges, rapid fire like this, it can be overwhelming. 

I grieved over the weekend for the loss of my friend, a mutant Auntie who knew my children well. Gabby remembered better than I did when 'library day' was for Olivia, and often greeted her after school through the wonder of FaceTime. I would chat with Gabby while I folded laundry, which transformed this mundane job into an engaging social event. She had a special relationship with Brent as a multiple cancer survivor and visited him both at MSKCC and in our home. Like Brent, Gabby frequently found herself in medical messes, and like Brent, she always seemed to find a way out. 

I cannot express how much Gabby brought to my life, in laughter which came easily, and random knowledge, which rivaled google. But beyond this, she had a grace and wisdom in how she faced her own life-one filled with cancer, but overflowing with love. She recognized that life is not measured in years, nor health, but rather in lives that are touched. As an example, she knew by name, nearly every person we met at MSKCC, from the nursing assistants to the elevator guy, teasingly dubbed "chief of vertical engineering"

"Has your son returned from his vacation?"  

"Do you have photos of the new baby?"  

I told her how remarkable this all was. (I am decent with remembering people's stories but horrible with retrieving their names).  She scoffed. "But, Amish, they are all so important. They care for me." And they clearly did, more than simply as their jobs required.  I know this with absolute certainty because some came to her room to check on her after they finished their work elsewhere in the hospital.

People were important to Gabby. And she treated them like the treasure that they are.  Even in hospital, even struggling, she always thought of others, which was the defining quality of her life. While nothing can be changed for Gabby, a better understanding of the immune system and advances in cancer treatment would benefit others, including our mutual mutant friends. In this way, I feel that biking the century ride honors Gabby's generous spirit.

I learned yesterday how to stick a 3/4 inch needle into my son's chest to access his mediport. For years, my personal measure of success was found in avoiding this particular nursing skill.  I will now be doing this procedure daily, in order to give Brent infusions from home.  I also navigated my way through several pharmacies this week in order to get the specialty medications that he needs. We are transitioning to a new adventure. 

It may sound like a complaint, but I consider it to be a blessing, to do this at home. (Brent sits cozily in our living room with his infusion dripping as I type this) He has had a ridiculous medical journey and his time at home is hard earned.  We never take it for granted. 

After facing three significant cancer diagnoses with Brent and the devastating side effects of treating them, I would gladly bike to support more effective and less toxic treatments. Biking 100 miles is a trifle, in the grand scheme of what life and cancer has required of my son and how both impact him today.

I took my daughter Lauren to meet her surgeon this afternoon, a hand me down from Brent's osteosarcoma days. Dr. Getty greeted us warmly, saying that he could not believe that it has been five years.  I told him that it was five cancers ago, if he wanted another measure of time.  He seems to bring out the snarkiest of humor in me.

Lauren is now fourteen years old, becoming a beautiful young lady.  While normal parents might talk to their children about the birds and the bees, a mutant sign of coming of age is learning to pick a surgical plan or evaluate treatment options. Today, my daughter asked good questions and signed assent for the first time.  

They grow up so fast. 

Lauren and I laughed in the car on the way home from this appointment about how I had bought a baby photo album for her, but as a third child, it was completely empty.  (I didn't even purchase an album for Olivia, our fourth.)  Lauren joked that instead we could fill her baby album with cancer memorabilia.  "Oh, look at that adorable adrenal tumor!  I remember that hospital gown..."  She certainly comes by the snark honestly.

Her surgery will be on Wednesday.  We welcome your prayers.  With any luck,she will not need any sort of additional treatment, but I am shopping for immunotherapy options if this growth proves to be malignant.  

Past, present and future.  This is why I ride.

Our team leaves tomorrow.  We each do what we can.  My sister Laurie, Alex and I will ride our bikes. Dan, Jamie, Brent, Lauren and Olivia will cheer us on. Thank you for doing what you can, whether it be encouraging our family, sharing our story, or donating to the cause by following this link:

Team RamerNation 

As I ride, I will be thinking of Gabby's disease, unconquered by traditional chemotherapy, about Brent's current challenges, which are side effects despite the success of treating his cancer, and of Lauren's future challenges. I know that we can do better.

I will have 100 miles to think about how.