As I dug up the explosion of wild onions in my iris bed this morning and I also weeded through my tangled thoughts. I need this kind of work sometimes, the sort that keeps the hands busy but allows the mind freedom to wander, to prioritize and to process.
Weeds are always a good metaphor for cancer. We are backed up against scans in my home, and the comparisons are unavoidable. We are being vigilant, in case a seed was left behind and a new tiny shoot needs to be plucked. I welcome your prayers, because I don't know if I can yet form my own. God and I have had some bewildering interactions of late. I have always struggled with faith and asking for what I need, but since Brent died, it has been even harder.
I have never presumed to know the mind of God, assumed any sort of quid pro quo, nor feigned understanding about the purpose for our suffering. But I do believe that it is an act of faith, to try to create something good every day, especially our of adversity. I have been working hard at this, and it serves as both my promise and my prayer. An affirmation of what Brent demonstrated over and over: that life is always worth the struggle.
I continued to pull the onion bulbs and replant the irises. The morning was a beautiful, glorious and warm. A pair of geese squawked loudly as they passed overhead, reminding me of my son, and a poem that I taught all of my children: Something told the wild geese.
There had been a different pair of geese yesterday, making the same noisy announcement of their arrival to the pond outside the Cleveland Museum of Art. Liv was so excited to bring her friend Maggie with us. We had a picnic of fruit and cheese while the girls sketched and explored the lagoon. The weeping willows had just begun to leaf, dressed in their delicate pale lace, and the cherry trees seemed to float like pink clouds. The hospital beyond was unseen from our picnic site, but I felt its presence nonetheless.
The girls chatted about the "must do's:" visiting the armor court, the enormous Monet that we call 'Brent's painting,' and the new interactive art exhibit. They scampered off to climb a tree and examine the garden sculptures as I looked on. They were most taken with Rodin's Thinker and the twelve sculptures of the zodiac. A church bell tolled the quarter hour and I focused on the sounds of the songbirds. It was a bucolic moment, even with the Peter B. Lewis roof line undulating in the background. The whole scene reminded me of the mother I had once been, before it had become so complicated.
"Why is Cancer a crab, mom?" I was brought back to the present and the cause of our perennial complication. I sighed, then explained to Liv that cancer is Greek word for crab and spreading tumors sometimes looked like crabs. Long ago, when the ancient Greeks first noticed this, they called the disease 'cancer.' I added that crabs, offended by the comparison with a horrific disease, probably asked to change their name and preferred instead to forever be associated with melted butter and deliciousness: a re-branding for the ages. I walked though the series of frescoes with the girls, telling the myths that I could remember, and connecting them to things that they could relate to.
I cannot deny that cancer has had an impact on our family. Alex is studying biomedical Engineering, Lauren intends to study pediatric oncology nursing. Olivia told Maggie in the car about how she wants to be an art therapist. Brent...I struggle to mention how cancer impacted him, lest the grief tumble out and the words never stop.
Prayer is difficult for me these days. I still cannot seem to form the words to ask for Lauren's health, as much as I desire this. It is not so much a lack of faith, I think. But I recognize that what I want is immaterial to what will happen, otherwise Brent would be with us and he would be strong and healthy. I do have faith that there is purpose in our struggle, even if it is unclear to me from my current perspective. To give meaning to our difficulty, I sometimes take painful steps, trying to make the world better. Faith, defined in this way, is how I get out of bed.
I took a graduate class on the renaissance several lifetimes ago, before Olivia was even born and when we only had one cancer under our belt. Rather than focusing on the beautiful art and architecture, my research focused on the plague and poetry, which might suggest that I have always been kind of a downer. Yesterday, seeing the beautiful paintings from that era, I was reminded of this piece that I wrote some time ago:
Faith is not so much a feeling, but a decision to act positively. To build. To rebuild. To make the world better, however you can, despite having a life radically different than you ever imagined, despite struggle, despite disappointment. Faith is the belief in and commitment to something bigger and more enduring than ourselves. It is the belief in the unseen, in something that we cannot always understand.Faith
Notre Dame took generations to build, and those who laid the foundation never saw it completed. There are scores of people unknown to us and long gone who contributed this beautiful treasure. Some offered physical strength, some brought ingenuity, other executed sublime artistry. But together, they created what is considered the finest example of the gothic architecture. The cathedral burnt this week, but there is a commitment to rebuild. This honors those who came before, as well as those who are yet to come. This commitment to rebuild by the French people, rather than to despair, is an act of faith.
Today, I was weeding but tomorrow, God willing, I will be planting.
I was sitting at the kitchen table with Olivia last night. Glancing at the paper that I had been marking up, she asked me what I was reading. Rather than a piece of poetry, as she might have hoped, it was a research paper on cancer disparities. "Oh, this is to just to help me for my work in Washington DC in a few weeks." It is sometimes difficult to explain the latest in cancer research. Olivia is 11 but she is curious and asked a million questions. I have been asked to serve on a workgroup at the FDA for tumor agnostic clinical trial design. She really wanted to understand what this was about. This was my explanation to her:
Your cells are complex machines. A cancerous tumor is a cluster of non-functioning cells. It is not like a single broken down car on the side of the road with its hazard lights politely blinking, which you slip into the other lane to make room for. A tumor is hundred car pile up, that shuts down the freeway in both directions.
Doctors initially defined cancer geographically, by where the defective cells had originated: breast cancer, colon cancer, skin cancer... They would treat every traffic jam in Topeka as a "Kansas problem." In Kansas, they would try different approaches to deal with the collection of wreckage, looking for what would work best. Surgical tow trucks would haul out the debris. Sometimes, fires could level a junkyard. But aside from this not being terribly effective, it was also hard to distinguish between cars that were just stuck in the traffic, and the broken cars that were truly causing the problem. Progress was painfully slow. Few investigators collaborated outside of their specialty. (The researcher's equivalent of 'What happens in Vegas, stays in Vegas!')
With better technology, scientists began looking more closely, at cancer DNA. Compared to shiny new cars coming out of the factory, many of those on the road have dings and dents. Researchers have discovered some defects, like a radio that wouldn't work. While interesting, this sort of alteration wouldn't really matter at all. Some researchers found other changes that would stop the windshield wipers from working, or perhaps the headlights, which does not hinder the function of the car directly. You can still drive, of course. But without these safety features, it is far more likely that a car crash will happen-- especially during inclement weather or at night.
I explained to Olivia that neither Lauren nor Brent have functioning headlights nor windshield wipers. It has been very dark and rainy for the RamerNation. We have seen so many car crashes. The past few years have been like having front row seats at the demolition derby.
Once a cancer collision happens, and the traffic jam gets noticed, doctors try to clear the scene, while the scientists try to sort out the cause. In recent years, researchers have been able to look even more carefully at the wrecked cars and debris to better establish why and how they are not functioning--Are they out of gas? Have they run over glass and blown out the tires? Is there a problem with the motor? Is there a problem with the brakes, the battery? Identifying the specific cause of malfunction helps scientists to develop strategies to fix the problem. These important observations and mutational discoveries, seen across tumor type, signaled the very beginning of targeted therapy.
With the recent advances in developing targeted agents, researchers have begun to sort cancers according to their system failure (the mutation), rather than by the location (tissue of origin), which makes enormous sense. When we understand what is preventing cells from functioning properly, we can begin to develop and administer a targeted fix. (It kind of doesn't matter where in the country the 'flat tire induced car crash' happened from a repair standpoint, unless you are in need of a surgical tow-truck. In that case a tumor specific specialty makes sense. Go with the guy that knows the roads best. A neurosurgeon clearly should not do your hysterectomy.)
So, in these new cancer studies, all cars with flat tires will be collected, regardless if they have broken down in NYC, LA or Atlanta, and they will be given "fix-a-flat, " as an example, or perhaps a new set of tires. Similarly, all cars with dead batteries from across the spectrum will be gathered in order to be jump-started, or given replacement batteries. To be perfectly clear, these trials sort patients by mutational target, rather than by tumor type. The treatment will target a particular mutation that is causing cells to not work properly, independent of what tissue the cancer presents in the body. So, rather than creating a "breast cancer trial" researchers are beginning to design tumor agnostic trials that might include patients with lung cancer, breast cancer, pancreatic cancer and brain tumor, all with the same mutation.
Cancer patients generally feel overwhelmed, frustrated and scared silly: They are late for work, unable to go to the grocery store or to take their kids to school because of a giant pile up that they never saw coming and don't understand. They often cluster together on the side of the freeway, waving matched colored ribbons like flags at a parade. They believe that banding together will bring awareness and solve the tumor specific problem entirely--"Don't mess with Texas!". This made so much sense initially, when cancer was taboo and we knew so little. We have since learned that it is essential to work together, across tumor type: From California, to the New York Island.
This new culture is an absolute dream for someone with LFS who tends to juggle far too many ribbons, and each month brings a new cancer to celebrate, for lack of a better term. Being a cancer independent, unaffiliated with a particular party...describing those challenges could be it's own blog post. Patients are only beginning to understand that the "why" their car doesn't work matters so much more than the location: of all the breakdowns in New Jersey, only some are flat tires. Every malfunctioning car in Trenton would not benefit from new tires, especially if it turns out that a good portion of these vehicles aren't running because of a bad alternator. This is why response rates, if you sort by tumor type, are so terribly low.
On the other hand, by ignoring tissue of origin and instead sorting by mutational type (sometimes called a "basket trial") researchers have seen much higher response rates in early phase trials, and these seem to require fewer numbers of patients to enroll before the FDA grants drug approval, evident in the record number of new drugs for cancer. Witnessing this kind of progress is an exciting and hopeful change. Targeted therapies are easier on patients. There are more of them every day. But for patients to even qualify for this kind of trial, they must have genetic analysis of their cancer done. This is a further challenge, when only 5% of adult cancer patients currently enroll in clinical trials, when they are easily identified. I hope to help researchers understand the barriers that patients face, and to suggest trial designs and strategies that will help bridge this divide and hopefully address the disparities. We will collaborate, work with advocacy organizations and hopefully have more successful accruals. I know that the oncology world is changing rapidly, and this is encouraging. I am grateful to be a part of that change.
In 10 days, Lauren will have scans again. This is the necessary traffic report for a girl whose cells, lacking wipers and headlights, have sped through streets riddled with giant potholes and other hazards. In a monsoon. At midnight.
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.
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 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.
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 isabsolutely 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.
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.
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, and a patient of Dr. Healey, a brilliant surgeon who worked tirelessly and successfully to save my son Brent's leg, back when he had his first cancer.
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.
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.
As his nutrition lagged, I prepared protein and calorie laden shakes for Brent. After drinking these for a while, they had understandably begun to lose their appeal. I remember once gingerly sliding a glass of "calorific goodness" onto the table next him. I attempted to soften the chore that I placed in front of my son with an enthusiastic and overly cheerful "I love you, Brent!!" He glanced at the beverage, raised an eyebrow at me and rather than reciprocating the affection, he replied sardonically, "I am aware." These three words became something of a joke between us. Lord, I miss his laughter.
September is a month filled with awareness. I could certainly use Brent's same inflection and sarcasm about now. "Cancer? I am aware."
We Ramers have long been "going gold" for childhood cancer in September, which, conveniently for us, is the same month and color for Sarcoma awareness, a malignancy that we have dealt with three different times in our children. We can thriftily drape those gold ribbons for double duty. In addition, the Leukemia Lymphoma Society recently notified me that September is also Blood Cancer awareness month, but I am pretty sure that this would be a red ribbon. Even so, we seem to have a good portion of our cancer awareness bases covered as autumn commences.
I have had trouble writing lately. My thoughts and feelings are difficult to articulate, and when I do tease them out, I am reluctant to weary the world with them. Grief is complicated.
Our summer began with a week of sketchy scans in Houston for Lauren. Her concerned doctors ordered follow up imaging in August (which was found to be blessedly clear.) In the interval, we filled our calendar with as many fun things as we could manage, including a quiet week at the beach. There is an unspoken urgency in our planning, both to make up for things that we were previously unable to do, and to do them quickly, before we become medically busy again.
Our summertime activities were good of course, but it was kind of like enjoying Nutella between moldy slices of bread, which is hard to stomach at times. On the other hand, if you all you have is moldy bread, slathering it in Nutella is definitely the way to go.
In addition to some purely recreational activities, I recognize the luxury found in having time for advocacy, and the chance to bring about positive changes. Lauren has lent her voice to organizations that she trusts and believes in: Kick It, which is now a part of Alex's Lemonade Stand Foundation, Flying Horse Farms, Teen Cancer America, Flashes of Hope. She has spoken with folks at Rainbow Babies and Children's Hospital about partnering with them in order to make things better for teens with cancer.
In addition to doing similar work at Rainbow, I have been reaching out to national advocacy groups in order to help shape policy at FDA and NCI. Whenever I think about how I might make it better for Lauren with her next cancer, I return to the arbitrary wait that Brent was forced to endure. Despite relapsing in early July, he had to delay until after his 18th birthday in October to queue up for the adult CAR-T clinical trial. He was not able to have his cells collected until mid November. The next six weeks, spent waiting for the cells to be modified and expanded, were excruciating. We helplessly watched as Brent got sicker and sicker. As tenacious as my son was, both the disease and the system were stacked against him.
Lauren will be 16 in a few weeks. I am keenly aware of this happy September event, but recognize that it might not be sufficient to her needs. I would never wish away this time as she returns to deliciously normal high school experiences, but we know that lot can happen medically in two years. I read every day about promising adult trials, for every type of cancer. While I sincerely hope that Lauren never needs them, the fact that she is barred from until she turns 18, this absolutely haunts me.
We Ramers interviewed with a local television station back in April (Alex was not there--off studying in Australia) Fox 8 began airing the piece last week to promote their annual charity walk/run. The 2018 Fox Trot on Saturday, September 8th will benefit Alex's Lemonade Stand Foundation. (Come on out!)
I am hoping that by sharing our story, we might encourage folks to attend the event, which raises awareness and funds for pediatric cancer research. But also, I hope it increases awareness about how adolescents are excluded from participation in adult clinical trials, an entirely arbitrary limitation that has enormous consequences, as we have experienced. I hope that by sharing our difficulty, we can help to change this policy.
This weekend, I celebrated being an Auntie, after a long hiatus.
I was struggling with the thought of facing Mother's Day, having just lost my son at Christmastime. I was daunted by a public celebration of motherhood, considering that this rather significant aspect of my identity had so recently been damaged, and irrevocably altered.
I was pretty sure that I was not going to feel comfortable or complete as a mother. So, I elected instead to focus on being Auntie this weekend, driving to Virginia to see my nephew graduate from Randolph College. I hiked some beautiful terrain with my sister's family, watching the comfortable companionship of her adult sons, as the brothers ambled ahead of us on the wooded trail. I tried to embrace this unusual gift of time with them, since my nephews both have travel plans that will take them far away.
Despite the beauty all around us, my serenity was hijacked, invaded. Often, my thoughts became jumbled with emotion as I made simple comparisons between my sister's slightly older children and my own. I imagined how Brent would have enjoyed a vigorous walk in the forest. The scenery conjured conversations with my son as I tramped along, a blending of poetry and science in my mind.
Seeing warm affection between my nephews, I reflected on how Alex's closeness to Brent was often defined in medical terms, of HLA matching and their shared blood, tissue and cells. It was clear to everyone that far more than biology connected them. I wish that I could have seen their relationship develop and mature in more normal settings. I am happy for Nathan and Eric, who will have a lifetime to share experiences. In the interest of honestly, I confess that it does make me a bit wistful.
I remember with gratitude, how close my children had been with their cousins before cancer disrupted our lives and our time became more restricted. Coordinating vacation plans obviously became impossible, but I also watched the incidental time that our families often shared begin to shrink. The easy, unthinking, spontaneous events like having dinner together after one of the boys soccer games or school events, disappeared altogether.
So much thought and planning would be eventually be required even for local excursions, as all things became complicated by our medical challenges and uncertainty. I am so grateful for the time and attention that Eric and Nathan devoted to each of their younger cousins over the past seven years, but especially for Brent. They would come visit him when they were home, for pizza and game night, even in the hospital. Brent enjoyed hearing about their adventures when he could not have his own.
My weekend was filled with sunshine and glorious weather in Virginia. I was proud of Eric's college experience and of his fearlessness as he travels across the world. But walking the campus, a pleasing contrast of brick and green, I was also haunted by Brent's college dreams which will remain unfulfilled. By extension, there are associated experiences as his mother that I am denied. Perhaps I feel this more acutely because Brent would have been graduating now and heading off to college, had he not relapsed with leukemia less than a year ago.
Over time, I will somehow reconcile how my son's life, while cut short, was nonetheless complete. I am not even close to understanding this dichotomy. But I believe that for me, this is where peace will eventually spring from.
Rather than banishing these difficult emotions whenever they arise, I try to acknowledge my disappointments. And then, I turn to the gifts that I have in front of me, of the family that remains, of the love that remains. I believe that this part, the love, will never diminish.
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 wecan 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.