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.

Carry on Baggage

The airplane was crowded.

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

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

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

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

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

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

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

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

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

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

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

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

It is (frequently) New Year

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


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


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


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


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


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


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


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


And wine.


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


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


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

Life-Work Balance for a Stay at Home Mom.

I am ready for the weekend.


Work has been busy.  I am in charge of two divisions: medical and domestics.  In the past several weeks, I have fairly handed over the reigns of the domestic division to Dan.  He, I should point out, has a J-O-B of his own, with drawings, and meetings and deadlines.  But, he has been pulling double duty, saint that he is, as I have fairly abandoned my domestic responsibilities.  This is because the medical division is hopping, unfortunately.


I had a business trip to NYC.  Our meeting was fantastic.  Dr. Healey was smiling and satisfied, which is most reassuring.  We chatted about a few things, and as we finished up and parted ways, we were told that Brent's next follow up would be in a year. We have never gone such a length of time between appointments, which is a solid victory.  Brent was fairly skipping on our way out.


We went to a movie in celebration.  By the time we returned to Ronald McDonald House a few hours later, my phone rang. University Hospitals was calling.  They found melanoma in the sentinel node on the left side. Brent needs more extensive surgery. And treatment. For a year.


Go ahead and swear, because I certainly want to.


As we travelled back to Ohio, our Angel Flight pilot chatted with me a bit while Brent snoozed in the back of the plane.  He told me a story about how pretty early in his career, he was very driven, but was cautioned by an older friend about the value of punching out and making family a priority.  This friend spent Christmases with the pilot, rather than with his own family, because, as he confessed, the kids grew to hate him.  It made quite an impression on the pilot, who sold one of his businesses and cut back on his hours, with absolutely no regrets.


So, my job has been busy this week: travel, paperwork, correspondence, research, phone calls....  I may have mentioned that I have not been terribly engaged prior to this trip, and rather distracted.  Dan, ever my rock, has been planning a very important birthday party.  Olivia turns 6 tomorrow, my favorite Valentine's gift.


I woke up this morning, and thought about all of the things that I needed to do, which is a lot. Dan has put together plans to make Olivia's birthday a special one.  Considering the fact that I missed it entirely 2 years ago, and only arrived in the evening for it last year (both times at MSKCC) I should be right on board with him, a partner in making it special.  I have been very busy with work, no different in some ways, than the friend of the pilot.  Granted, I am not driven in my 'medical job' by the desire for material things, but from Olivia's tender perspective, does it matter?


So, this morning, I snuggled with Liv as I woke her up for the last time as a five year old, giggling and teasing.  We took our time getting ready and I drove her to school.  When the kids get off of the bus today, I am going to punch out for two days to celebrate the gift of family, and particularly the gift of my youngest.


And I am very grateful for my first Valentine, who drives the train when I disappear either physically or emotionally.  Dan means the world to me, and to our family.  He has always had a good life-work balance. I keep finding my way back, because of him.

A moment of Thanks and the spirit of Giving

This is the week when the seasons blend a bit, a concept best illustrated by the still life in front of my neighbors house:  A giant pumpkin covered in snow.  This same snow will hopefully hide the fact that we have been derelict in gathering up our leaves.  Ehh, those leaves will still be patiently waiting for us in March… or May, depending upon the weather and our ability to get to it.

So, Thanksgiving was a week ago.  It is probably my favorite holiday in its simplicity and pureness.  You get together with your family, you count your blessings, you eat a really nice meal with people that you love and watch a comedy together, or maybe a bit of football. Perfect and complete!  I received an email from an old friend who wondered what our Thanksgiving answers would be to the age old question "What are you grateful for?"  More to the point, what am I not grateful for these days? 

My children show No Evidence of Disease, which is something that I will never, ever take for granted, with the understanding that we will always live in three month periods of grace.  But even better than simply dancing with NED,  Brent is making strides in PT, becoming stronger and more balanced.  I am trying to do the same, both literally and figuratively. 

We have had the good fortune to have met some incredible people over the past two and a half years.  I am obviously very grateful for the medical professionals that have helped us on this journey… they are far too numerous to count. 

But outside of the medical setting,  we have met others who have used their time and talents to help make it possible for us to get to this point, or certainly make it a bit easier.  For example, pilots from Angel Flight have frequently flown us to New York.  This gift of time and resources has made it possible for Dan to conserve his sick time, saving it for chemo and our various surgeries, while Brent and I traveled to NYC for follow up appointments. This generosity and kindness has mattered a great deal to our family and will never be forgotten.

We have benefitted from other charitable organizations.  I cannot adequately express how humbling, and touching it is to have complete strangers extend such courtesy and caring to my children.  At Ronald McDonald House, which offers discounted housing near to the hospital, volunteers will play games with the kids. Some companies sponsor dinners, and their employees will come in and prepare meals for the families who spend long hours in the hospital. 
 

The Make a Wish program provided welcome distraction for Brent while on bed rest, as he fantasized about what he might wish for.  When he anticipated another long stint in a NYC hospital, he used his wish to open up his world virtually, with a laptop computer.  Absolutely everyone involved in Lauren's wish trip was incredibly kind and created an opportunity for her that we could never have, which brings tears just thinking about it.   All of this was possible with the donation of airline miles, of volunteers time, and of financial contributions by companies and individuals, none of whom know us personally.  Amazing.

Kick It and Flashes of Hope help us in a larger sense, as potential beneficiaries of research that these organizations help to provide. But in a more direct way, our children feel empowered through these charities, by helping to raise awareness, as well as much needed research dollars. 

The stylists and the photographers that volunteer with Flashes of Hope donate their time at the hospital and have an enormous impact.  They help children to feel special and capture moments of beauty, tenderness and love.  While the photos are black and white, the experience is a bold splash of color in what can be an otherwise grey hospital existence.  It is a remarkable thing that they do, and it makes a difference for children with cancer on multiple levels. We were once again touched by people who we did not know, directly helping our family

I have met scientists who dedicate their efforts to understanding cancer and genetics.  I am grateful for their curiosity and for the dogged determination that such investigation requires. Research is methodical and thus, very slow to bear fruit.  The patience required would likely disqualify me from such pursuit.

On a more personal level, our friends have been exceptionally understanding of how flaky we can be.  I have made plans, and abruptly cancelled more times than I can say.  We have failed to attend weddings and other important events for people that matter a great deal to us.  It is a journey of long suffering, and patience, being a friend to the Ramers  And we have been blessed with some amazing, long suffering friendships.

I count all of these blessings like a bountiful treasure, reminding myself of how fortunate we are.  This week, I have also had several reminders of how difficult life can be.

A faraway mutant friend messaged me as she travelled to a military hospital in Hawaii.  Her daughter, married to a serviceman, was diagnosed with breast cancer and was having a double mastectomy this week.  Her other daughter recently had two brain surgeries and she travels back to the mainland next week to manage the chemo and radiation schedule that they are still devising for her. A third LFS positive daughter, had cancer while pregnant, as did the baby. It reads like fiction, but this is LFS reality. My heart goes out to Joann Million, as nothing about what she is doing is easy. 

I thought about what I might do to be helpful. I actually have a dear friend in Hawaii that knows Tripler Hospital all too well.  However, this is because Jen is currently getting treatment there for metastatic breast cancer and is hardly in a position to help.  The Mallory's have four beautiful mutant children, which can only be a constant worry and scheduling nightmare, medical and otherwise, but a blessing nonetheless.  I very much would like to be in Hawaii, and not because it is paradise, as I teasingly refer to it. 

I learned of the passing of Jacob Tholl, a father of 5, after a 19 day struggle following an electrical accident at work. My heart is heavy as I think about how this family's holidays are so different than what they had anticipated. 

My friend lost her father after a long battle with Alzheimer's this week. While the holidays are supposed to be joyful, they can be difficult as well. My prayers are with all of these people this holiday season, the juxtaposition of struggle in its various forms against the backdrop of Christmas and tinsel.  It is hard sometimes. 

I finally managed to work out the scans for the kids.  We do not intend to spend time with doctors until January 6th. I am trying to relax, and to enjoy our Christmas without an immediate concern about cancer or major surgery hovering over it.  For the past two years, that worry hung out with the angel atop the tree, also gazing down on us, but with a far less benevolent look.  It is hard to shake that feeling that a shoe might drop, having experienced a tornado in a shoe factory. 
 

 

As I saw someone cynically point out, only in America do we gather around the table in November to express thanks for all that we have, and exactly 24 hours later learn that some people have been trampled to death in an effort to get more.  Makes you shake your head.

But also in America, the spirit of thanks bleeds into the spirit of giving.  And while everyone speaks a different love language, I believe that this time of year gives witness to a conversation that is dominated by love.

When we offer the gift of our talent, like the little drummer boy, wonderful, beautiful things begin to happen. Everyone has a talent, some sort of gift to offer: the hairdressers at the hospital, photographers, pilots, those skilled at cooking or baking, something as simple as taking the time to read to a child, or to visit with a veteran, singing in the streets if you have such inclination...the spirit of giving does not need to be commercially driven, and does not, most thankfully require money. 

It is giving of yourself. 

Once you reflect upon your blessings, think about how you might turn and transform these gifts, in order to help others.  It might be financial, it might be a service, it might be kind words. Because it is not what we have in this life that is important, but what we do with what we have been given.  I feel like we Ramers have been given so much.

I met with a hospital administrator this week who said to me, "As much as we accomplish, I learn how much more we need to do for our patients."  Rather than being overwhelmed by this notion, he was inspired.  I seek to follow this example, and to do as much as I can, with what we have been given.

And to do it joyfully, compassionately and wrapped up in love.



Should you want to help the Million family that I mentioned above with travel and medical expenses, there is a link below:  

https://www.giveforward.com/fundraiser/yf23/help-the-million-s-fight-li-fraymeni-syndrome?fb_ref=1364692&fb_source=message

The Mallory family accepts help here: http://helpinghandsforthemallorys.blogspot.com/

And finally, donations may be sent to help Jacob Tholl's family here:
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=PQFK3TDSBSN4S

 

Our current 'needs': cheap therapy, clean socks and a cryogenic freezer.

I haven’t been writing much.

Perhaps I should rephrase that.  I have been writing a whole bunch, but I haven’t been writing for me…  writing as therapy, which is what this really is, in case you haven’t figured it out yet.  I write to sort my thoughts, to direct my actions, to ground me, to explain to others what this crazy cancer journey is like, and, in all hopes, to help others who find themselves in similar straits.  Mostly, though, if I get thoughts out of my head and put them down in words…well, I can better manage it all.

This is not to say that I am ‘not managing’, exactly, but I do have a whole lot swimming about in my noggin these days.  I have a whole lot on my ‘to do’ list. And I have a whole lot more that I want to add to it, which even I can recognize, would be pretty foolish and hugely unproductive at this point. 

I have been reading.  I have been meeting with researchers.  I am excited by the things that I am learning.  I am astounded at what they have figured out and hopeful about what we do not yet know, but might soon discover.  The rapid exchange of information and the exponential increase in the rate of learning are most encouraging to me.   We have long established that patience is not my strongest suit, so this is all a very good thing. 

I have long been dreaming of having a cryogenic freezer in my basement, in case you are looking for Christmas gift ideas.  Hunting down tumor and tissue samples, beating institutional bureaucracy and sending these samples to researchers are all pretty time consuming.  If I had our various tumors and tissues stored right here in the convenience of my own basement, I am thinking that I could just call Fed Ex and be done with it.   Yes, the fantasies run a bit different these days.  And the Ramers are something of a freak show.

I have also been sorting through some domestic things, most of which is not nearly as interesting as what is coming out of the scientific community, but hugely necessary, in a ‘we need clean socks’ sort of way.  I really am grateful for the opportunity to devote my time in such a manner.  The luxury of waking up in my own bed, with all of my children sleeping down the hall is not something that I take for granted.  Also, we have really enjoyed doing some things together as a family, realigning and reconnecting.

Clean socks, well, we shouldn’t take those for granted in this house either.

In many ways, I am still trying to ‘get it together,’ and it is already mid-November.   As I look at it, it is probably too late to get on top of some things, but still far too early to scrap it all and say “Next school year…”  I might not be putting out large medical fires (most gratefully!) but I can pretty much guarantee that I will still be taken by surprise for parent teacher conferences or some other school function that I probably should already know about.   Never mind about the various forms and deadlines, which I will openly admit that am appalling bad about.  In this regard, I am still trying to catch up.  I am most fortunate to have lovely friends who remind (read: inform) me of essential meetings.  It does take a village, apparently. 

Because, I have just been buried.  I am happy to report about our trip to MSKCC earlier this week particularly because New York had good things to offer:  Brent starts physical therapy on Thursday.  May we remain on this path of healing and strengthening.  It has certainly been a long time in coming.  Glory Be!

Whenever I get overwhelmed, I go back to making lists, and crossing things off.  This week, my medical list got pared down from ridiculous to somewhat reasonable, by Ramer standards.  So, now I can focus on the business of trying to run a household with four children in it.  That list is now ridiculous, and, as I have stated, I don’t even know everything that should be on it.  Maybe I will just start with groceries and bedtime stories.

And clean socks.

Boring is beautiful, and not just on scan days.  But, if I had to pick, I would take 'boring' on scan days, every single time. The rest is easy.  Or at least a hell of a lot easier.  And recognizing that fact, the focus on it, this will get me through.

 

Counting up the October blessings

I have had a busy month. I generally accept whatever lands in my lap, be it screwed up genetics or the kindness of strangers (or of loved ones.) While I do go out and make some things happen in this life, lately, I have been guided by what comes my way.   A lot has been put in my path recently.

As I look it over, it has been overwhelmingly positive. 

We did Lauren's Make a Wish.  Our trip to California was a huge blessing, and Hollywood couldn't have had a better experience. I am so amazed by the kindness of strangers.  My faith in humanity, if it had faltered at all, was renewed by the generosity of so many toward my children.  Having endured two solid years of 'medical nonsense,' as I euphemistically refer to this nightmare, I was glad to be together, outside of a medical facility, and for us to just have some fun as a family.  I was very grateful to not have to plan anything.  I feel lucky beyond measure.

I went to Boston last weekend to a genetics conference, which enabled me to meet some online friends.  I would try to write about what this was like emotionally, but I am afraid that I couldn't describe it any better than my dear friend Jen Mallory already has.  So, I won't even try to, rather just direct you to her beautifully written blog: 

http://lilykaymonkey.blogspot.com/2013/10/sisterhood-of-travelling-mutants.html

There was way more laughter than should be allowed...and hideously inappropriate cancer humor.  I am a firm believer in the notion of  'whatever gets you through.'  These ladies definitely are 'getting through.' I should mention that a song/chant of "I heard a little rumor, heard that you have a tumor, you have to have some humor, can't be a doom and gloomer" probably should not be what you lead with, approaching a newly diagnosed cancer patient.  However, this group is not standard, lets just say.

Further example of non-standard, when asked how many malignancies she had had, one mutant friend had difficulty answering, because she didn't consider melanoma a "real cancer." I think that we settled on five for her, but there was some debate, and also some beer.  So don't hold me to that number.

If the mutant convention was enjoyable, it was also enlightening. I met some researchers, and learned about the things that they are studying.  I am grateful for their work, and for the fact that we will gather together, researchers and subjects alike, every year now.

While some of the presentations were very "number-y,' there were encouraging things to be found in nearly every report.  My personal favorite was a researcher out of Utah, who serendipitously learned that elephants and whales, despite their much larger size and increased number of cells, oddly, most surprisingly, have a low rate of cancer.  There is almost no cancer among elephants.  He investigated and it was discovered that this is because elephants have not one pair of p53 genes, but 20 pairs.  20!!!  When I shared this with Lauren, she asked if she might borrow some elephant DNA, and giggled enthusiastically.  I would absolutely get her transfused with pachyderm blood, if I thought it would help.  It is coming, or something of the like, though, and I can feel it. 

It was birthday season, and birthdays are joyful days, particularly in our house where we do not take them for granted.  Cannot take them for granted.  The oldest three kids all have birthdays within 6 weeks of one another, and we have had our fair share of cake.  I keep saying that I feel that good things are coming our way, without any real justification for the feeling.  Out of the blue, Dan's dad offers not just his former car, but his pride and joy, to Alex.  On his 16th birthday.  Yes, we could never have done that for him. 

While Alex is understandably excited about this, I recognize that it is a gift to me as well.  He will not only be able to get himself to soccer practice and school once he gets his license, but will be able to help me get the other kids thither and yon...if I ever get it together enough to organize after school activities beyond physical therapy for any of them. Sigh...I will get there.

Upon our return from our Make a Wish trip to California, we did scans.  They were generally good, as I reported out.  There was one node to follow up on this week.  And I had slipped in the dermatology 'once over' this week as well, one that was supposed to happen over the summer, but had been pushed to the bottom of the priority list.  This is understandable, given that we had two New York surgeries to contend with.

So, when I returned from Boston, we had dermatology for the kids, which was not completely straightforward and will require several follow up visits. Sigh... Thursday, Brent had his follow up ultrasound for the concerning lymph node, which initially showed that it had grown.  Not a fan of this.  After dropping him off at school, I went to a friends house, to have coffee and catch up.  As I prattled on and on about my worries that afternoon, I fielded calls from the hospital.  Judy is a beautiful, dear friend with the patience of Job, sitting there as I sorted through the various hospital issues on my cell phone. Eventually, the CT was cancelled and it was finally determined that we are not looking at lymphoma.

"You are a mom.  I don't imagine that you ever stop worrying, knowing that everything can be cancer. I don't know how you do it." 

I explained it like this:  Lauren had headaches all week, a symptom of a virus that has been freely shared in my house.  Because she just had scans, I was not at all worried.  It was the only reason.  Usually, scans are on a single day, marked by mounting anxiety, which we try to mitigate, followed by emotional release with the hospital phone call.  Big worry, then giant relief and celebration when we get the all clear.  And peace, and confidence (oh, except for that time when they called about Christmas brain surgery).  The scans, which are stressful, are the cover charge for any ability to relax. Ever.  This time, there were follow ups...and so the worry drags out a bit.

The good glow of clear scans lasts about 2 1/2 months.  At the end of the day, we have been granted this blessing.  So, I will run with this.  There are good things coming our way.  Looking this over, I have no idea why I ever doubted it.  I am grateful for the further confirmation this week.

Brent and I leave in the morning for NYC, armed with some oncologic reassurances, looking for orthopedic encouragement.  We will again be relying on the kindness of strangers, taking an Angel Flight from Cleveland.

Good things are indeed coming our way.  The blessings from all sides keep landing in my path.

Fantasy Leagues

For years, Dan has put together a fantasy football league.  We are not big gamblers, so for the small cover charge of $20, we could compete for the entire season.  Dan dubbed it “Big Steaks League.”  With the winnings, a big steak dinner is about all you could get.

But this was a way for us to connect with some people that we didn’t see regularly over the fall, touching base, if only for online football smack talk.  And fantasy football had the added benefit of making watching the Browns a bit easier, because while they have consistently struggled on the field (sigh…), I might have a fantasy player on the opposing team.  The matrix of my hopes has become more convoluted and complicated, as you might imagine.

Over the past two nightmarish years, (both for the Browns and for us Ramers) we have continued to watch Cleveland on the gridiron.  However, I have been hopelessly derelict in maintaining my fantasy team.  This was evident on bye weeks, when half my active roster was not even scheduled to play.  I know, annoying.   I am that one in the league, which is the height of rudeness according to fantasy etiquette.  Thank God I am married to the commissioner, although even he is losing patience with me.

It is hard.  We have been pretty busy with cancer, treatments, surgeries and recoveries.  At one point, Dan asked me if I could step away from cancer, from medicine, to let it go and relax.   He has been helping me, to varying degrees of success.

For example, the spring that we wound down with chemo, he put in a garden for me.  I have long loved working the soil, and enjoyed the planning, the planting, the patience, and the hope that goes with gardening. He made a gift of this, to help guide us back to our former life.  Unfortunately, the entire summer was spent finishing chemo, and then day trips for countless follow up appointments at Rainbow Babies and Children’s Hospital.  We also took a hospital vacation to New York and Boston, visiting doctors and geneticists: medical tourism at its finest.  You can easily understand the failure of that garden.

I signed up for fantasy last fall, knowing that it would be an important sign to Dan, of us getting back on track.  I failed to adjust my roster.  I am not even sure that I ever logged in.  I had wounds to watch, doctors to organize, and research to prod along.  I wasn’t able to focus on much beyond these occupations, and struggled to follow the Browns, (which is not really saying much, because most people struggle in following them.) 

Seasons change.  Cleveland teams lose.  Surgeries are scheduled.  Cancer is gratefully averted. 

Dan put in another garden this summer, one that we were seldom home to tend, but our 85 pound “puppy” was most helpful with.  It was an epic failure. 

So, in good faith, I tried fantasy again this fall.   I have been distracted, recovering from surgery and getting things pulled together on the home front.  The Browns, in week TWO, trade Trent Richardson, who was heralded as our best player.  Clevelanders despair, and begin to burn all manner of things brown and orange.  Sigh…

The other difficulty in my ability to focus on the Big Steaks League is that I am pretty active in another fantasy.   This is the ‘Big Stakes League.’  Many of the cities are the same, but the teams are a bit different.  Minnesota doesn’t field the Vikings; I get news from the Mayo Clinic.  Los Angeles is the City of Hope.  New York's powerhouse is Sloan Kettering.  Say ‘Boston,’ and I think of Dana Farber, not Tom Brady.  The Tennessee franchise at St. Jude has great promise . It is always worth seeing what Houston is putting out there, because MD Anderson is among the super bowl institutions on my news feed.  I have rather a lot of them, and am encouraged by the developments in their programs.

I have scouts from across the LFS world letting me know who is developing interesting theories, and promoting their exciting ideas.  They will helpfully share what star players they have come across in their oncology travels.  Surgeons, oncologists, geneticists, studies, clinical trials, holistic medicine, all shared with the hope of helping one another with the myriad of needs that always seem to present.   I happen to know of a pretty terrific ‘offensive coordinator’ headed to Arizona.  Cleveland, by the way, has lots of promise in this league.

But the downside of all of this information is the reality that my new LFS friends, these oncological scouts, they are in this same conundrum.  There are fears, concerns, disappointments and a beautiful fighting spirit.  There is love.  I witness much struggle, which even digitally, is hard.

These struggles become my struggles.  And it all serves to remind me that while the Ramers are blessed in this moment, there are no guarantees.  I would very much love to be on the other side of scans, which are on 10/14, for the reassurance they offer me for a time. 

We have the wonderful distraction of ‘birthday season’ right now.  Three of our children have birthdays within 6 weeks of one another.  And I am certainly celebrating this.  I am working hard on not allowing scanxiety and fear to creep in, and taint the gift we have in our medical quiet.

So, on Sunday, the Cleveland Browns played the Minnesota Vikings, and won.  They had a rough 3^rd quarter, but had some really promising plays with a 3rd string quarterback.  You never can tell.  It is only week four.  Perhaps I should try to check my roster. 

HONY, Cancer and the Ivory Coast

I follow the HONY page on Facebook, which is fantastic.   A man walks the streets of NYC and takes photos of average people (and admittedly, in NYC, there is no shortage of ‘characters’) and asks them some questions.  He posts the brief interview, or a caption, and the picture. 

I enjoy it, because I love NYC, having spent much time there while my son Brent sought treatment at Memorial Sloan Kettering Cancer Center, but also because I believe that there is something very powerful in what Brandon does.  He finds terribly interesting, funny and touching stories out of the most unassuming people.  And I believe that he challenges people to look at those around them in a new light.   Everyone has a story, if we only stop to consider what it might be.

I have never seriously commented before, generally reading others responses and trying on the various perspectives, both of those featured in the photos, as well as that of the commenters.  Today, with the photo of a man who left his violent homeland on the Ivory Coast, seeking a better life here, I wrote the following:

Ann Ramer: I think that we do not understand what political stability offers us.  Political stability allows us the luxury of griping about our government, rather than fleeing it.  We are blessed here.

Ryan Pulito: Political stability? You mean when one group has a monopoly on the use of lethal force?

Ann Ramer:  I mean when we have orderly elections that result in the peaceful exchange of that "monopoly on the use of lethal force" In other countries, this is not consistently accomplished. And there are enumerable blessings that come with this fact within our country. I acknowledge that many things are not perfect. But, without this basic foundation, so much else becomes impossible, things we take for granted, enough to even complain about the imperfections.

 

I did not want to get on a soap box, long posting on someone else’s site, but I thought much more about this today and thought that I would share.  I have my own blog after all.

While I disagree with Ryan Pulito, I really do not want to get pulled into a pissing match with him.  The political contentiousness that we have in our country,  I also consider that to be a blessing, not experienced in many other countries.  While some despairingly say that we have never been so ‘divided’ in the US, and conversations certainly can become heated, they are combative conversations, not actual combat.  Talk to someone from Somalia, or Syria or many other places in the world, and they can explain the difference.

I have been thinking a lot today about those blessings that we are afforded.  One, interestingly enough, is Pediatric Cancer Research, which we strongly feel is grossly underfunded.  We are blessed with both the opportunity to complain about it, as well as the opportunity to do something about it, precisely because of the political stability we have in this country. 

How much money do you think is invested in cancer research in war-torn African countries?  How many research facilities exist there?  I imagine that there are not many, because building elementary schools and hospitals is a big enough challenge.  Survival, in the most immediate of terms, is the highest priority.  It has to be. 

And because of this, everything else falls away to a very distant second. Investment in such sophisticated things as genetics labs or cancer research facilities, ones that might easily be taken, or destroyed, seems very risky.  Investment in science, quite frankly, should be a low priority if you are more likely to die in violent political reprisals.  Someone wise once told me, "Battle the shark closest to the boat."  Cancer is clearly not their shark.

Our stability, and the long general experience that we have with peace within our borders (recognizing, and in no way diminishing, the occasional episodes of violence, such as 9/11), permits us to have investment in cancer research, facilities adequate for the task, and scientists and doctors educated enough to tackle these tough problems. We assume peace, because we have no memory of anything else.  We proceed and invest accordingly.    

It all starts with the foundation of political stability, a blessing that I do not take for granted.

With an absurdly rare genetic predisposition to all forms of cancer (Li-Fraumeni), and two children with cancer (and 3 different types between them), I maintain that we are lucky.  Lucky to live here.  Lucky to live now.  And lucky to have the opportunity to try to help researchers advance their understanding of cancer and of genetics. 

We are very blessed to have no bigger fish to fry, or sharks to battle, as others in the world do.  We do not worry about feeding our children, or about violence likely visiting our home. 

We do worry about cancer visiting our home. 

But we have the opportunity to do something about it, which, as I recognize, is its own blessing.

Brent the Great, the One Hip Wonder

 

 

 

I am not terribly tech savvy. But, as there was something graphic that I wanted to share (thus saving several thousand words, if my math is right), I have been required to learn something that most would find most basic...importing photos.  Normally, I would just haul my husband in, who is my tech guy for such things, and creative in ways that I am not.  For example, I will not likely sweat, picking the font that I use, which I am told, matters.  Heck, I cannot figure out how to clean up the text on this blog, in order to have a consistent size of text from post to post.   I am sure that Dan would work at it, and make it pretty for me if I asked, but this is supposed to be my deal. I should really grow up and learn something.  I will get there, eventually.

So, I was going through our photos, which incidentally, live on our hard drive and in some place called 'The Cloud.'  I will not dazzle you with my knowledge of how these things work, because I am a little fuzzy on the details.  Just know that like so many others out there, we take photos and they generally remain in digital form.  We almost never print them out.  But, I was looking for examples that will illustrate the design process for Brent's logo.  Because if you didn't know him, it wouldn't make any sense. 

It was hard, not simply in a technical way, to look over these pictures, and to see where we have been.

This first photo was taken on the last day of school in June of 2011 at our neighborhood bonfire, which is a tradition held dear in this household.  In order to properly kick off summer, the kids go down to the park and burn their old homework assignments while the parents grill off hotdogs and such, a wonderful way to catch up with other families.  My kids save their school papers all year in anticipation of this day.  Their "burn pile" is pretty big.  There is joy in burning that stuff...victory and satisfaction, all of which is quite evident in Brent's pose.  Lauren isn't unhappy either.

 

 

 

 

I look at photos now differently than I did before.  This is a great photo, just showing the delight of some children..."No more school! No more books! No more teacher's dirty looks!"  (Actually, they enjoy school and the teachers are pretty terrific)  But, I look at this now with the knowledge of what is coming in a few short weeks for Brent, and in 6 months for Lauren.  I am a little haunted.  Can't help it.

 

 

Brent was diagnosed the first week of school that fall, and our world fell apart.  Brent was incredible, I have to say, making the best of every situation, and finding joy in the small things.  Getting discharged after another week of chemo was always cause for jubilation.  This photo was taken a few weeks into treatment, less than 3 months after the one above.

 

 

I was telling my mom, that going through the photos was shocking, in a way. Even when Brent's hair all fell out, practically overnight, for his birthday (yeah, that was fabulous timing), the physical changes were small, and we saw him daily. He was still Brent.  He continued to celebrate discharge, or as we often called it, "parole."

 

 

 

 

 

 

 

Christmas.  Lauren had brain surgery. We traveled to NYC to see about a surgery that might spare Brent's leg. While there, we visited a huge Toys R Us, which was something to see, and apparently, to celebrate.

 

 

 

Brent had his 'giant surgery,' in NYC.  And 2 follow up surgeries.  And more chemo. Time passed. The seasons changed. There is a lot covered by these spare sentences.  

 

Before Brent finished with chemo, which is an experience so isolating that I struggle to express it, Brent wanted to see his friends. It was beautiful spring day, one weekend off, so we went to a soccer game, to see his former team play. I remember him crutching down the hill to the field that afternoon (which is steep enough to be a challenge, even without the mobility issues that he had) and I worried a bit as I watched, but you have to let them stretch their wings. 

 

Brent had the best day, sitting on the bench with his team and at the end, we took this photo, which still brings tears to my eyes.  The soccer club, along with the school and the community here, have been so amazingly supportive of our family.

 

 

 

 

 

After chemo was finished, Brent had physical therapy, to try to strengthen his leg, and learn how to walk on his new hip.  He returned to school, and we tried to get back to a normal life.  We were offered tickets to go as a family to a Browns game by Angela, the Child life specialist, with other families from the oncology floor.  We had a fabulous day, enjoying some beautiful weather, doing something that normal families do, and watching the Browns actually win.  Believe me when I say that a win for the Browns is cause to celebrate, nearly as much as the day Brent finished chemo. 

 

This time Alex struck the pose:

 

 

Brent had an awesome year at school, despite missing the month of January for another jaunt to NYC for surgery to do an muscle flap.  But, as I mentioned, May was a little rough when we learned about the donor bone disintegrating, and that he might have cancer again. When we found out that the pathology was clean and that there were orthopedic options involving limb salvage, we certainly celebrated.  We were cautioned that it would not be easy, that there would be at least 2 surgeries as part of the reconstruction. 

 

Always a surprise, but a pleasant one this time, Dr. Healey told us after June's surgery that the ligaments holding Brent's femur to the pelvic bones were pretty tight and might be sufficient to walk on, even without an iliac wing.  Unsure of what Dr. Healey might do leading into the second (really, 6th) surgery, Brent asked me, if he was left with what is known as a 'flail hip,' could we call him the "One Hip Wonder?"  He was giggling like nobody's business.  But that is just how we roll here.

 

Back in New York in July, after it was determined that we would not put in any hardware, Brent and Dan came up with the following, using an image, serendipitously discovered on the internet, and the magic of photo shop:

 

 





 

 

Cancer can take his hip bone, but it cannot take his humor (or his humerus-ha!). It may prevent him from playing soccer, but it cannot stop his determination...whatever he decides to do in this life. In doing this logo, he is defining himself, rather than being defined by cancer.  It is both empowering and powerful.

 

 

 

When we had scans earlier this month, Brent and I went to the Cleveland Museum of Art on a break between appointments.  We got the call while we were there from the hospital telling us that the scans were clean.  I snapped this photo at the lagoon.  His self-appointed title is "Brent the Great, the One Hip Wonder."  Given what he has gone through in the past two years, he can be called whatever he wants.  I like it though.  I kinda like the logo, too.

 

 

 

 

The latest (or last) surgery

We wait, with coffee.

We have returned to New York, to do what we are hoping is Brent's last surgery.  We are grateful for our blessings, which I count like a rosary.  We have no oncology.  We are all together as a family. We have no oncology.  With Dr. Healey's help, Brent will be able to walk.  We have no oncology.  I cannot seem to repeat that one enough times.  

It has been a long hard slog these past two years.  But I feel, more than hope, that our world is going to open up, and that our kids will only visit the hospital once every three months for scans.  I feel, more than wish, that our family might be having a bit of a breather.  Often, as we approached such a point or potential before, I longed for such normalcy, and craved for time at home, but I didn't feel that it would happen, quite the way that I do now.  I have a calm about things, that I have not had in a long time.  I do not feel that I have to fight my circumstances.  I do not like to fight, incidentally, being more of a 'peace and love' kind of girl.

My alarm went off at 430, which was not nearly long enough after Vanco was finished.  Once I showered, I woke Brent so that he could take his second Hibaclens shower. As we left, I woke Alex to bolt the door behind us so that if Olivia should wake up, she would not wander, because I knew that Alex was going immediately back to sleep.  I am grateful that he is nearly 16 and can help look after the girls while we are at the hospital this morning.  Such a blessing!  

It was already hot and very humid as I pushed Brent the five blocks to Sloan Kettering.  Dan, coming from a hotel, would meet us there.  

  

First thing this morning, we bumped into our pre-op nurse in the hallway, who remembered Brent from his first surgery, and even came up with his name after a year and a half.  The nurses here are amazing, if I have neglected to mention it. The oncology nurses at Rainbow Babies and Children's Hospitals are pretty awesome too, but we have not really seen them lately.  This is another blessing to count, duly noted.

We have come to the point that even here at MSKCC, we are considered veterans. They approach us a bit differently, much in the way that you are treated differently when having your second child. You will certainly have questions, but every last detail does not need to be explained.  We are not the nervous first time parents.  Brent is not the nervous first time surgical patient.  While we would prefer not to be doing this, at least we are familiar with the process, which is at least a known quantity among so many unknowns.  

I was interrupted here by a woman who struck up a friendly conversation with me. (A few weeks ago, Brent pointed out that this happens all of the time, strangers speaking to me out of the blue..and I have begun to notice that he was right)  She is alone, waiting for her step father to be done with surgery.  She is anxious, I think, in a way that we are not.  (I would return to the part of my mantra that says that we do not have any cancer to deal with right now, and we have comfort in the familiar process)  But cancer makes everyone here family in a way, and this 'cousin,'  if you will, needed reassurance, or maybe just someone with whom to share her hopes and fears, as we all do at such times.  Her step father happens to be part of a clinical study, and she shared with Dan and me, the promising ideas that are being explored here. It is exciting to learn about the things that they are able to do and are learning to do. 

We were called in to see Dr. Healey, who had good things to report.  I had shockingly few questions, thinking back on it.  We talked about the distant future for Brent.  There were not, I noticed, very many responses of "we will see," an oft given answer which had been the source of much frustration for me over the past year and a half as I tried to peer into the future and sort out the plan.  So many things had hinged upon the success of the very next step, that trying to see the likely eventuality and the road between here and there was futile.  There were too many variables, .  

I have finally become comfortable being very, very present, which might have been the point of this exercise, if I were to be so bold and speculate on one of God's purposes.   And so now, we have begun looking far ahead, lest I become too comfortable. Yes, I believe that God also has a sense of humor. 

In the PACU, we were visited by nurses of surgeries gone by, which was nice.  Brent woke to declare from a narcotic haze that "This is going to be the best admission ever!"  evidenced by the fact that he only had one IV that was soon pulled in recovery, and no catheter.  What more could a 13 year old wish for?  

We found out, when we eventually made it to the floor and he scored a single room...and furthermore, learned that age restrictions that would have made it difficult to get Olivia (at 5) in for a visit, have been lifted.  It doesn't get better than this.  Brent is right, this is going to be the best admission ever.

And, I am hoping, the last.