Believe

[For once, I have good news. So read on.]

I love Roger Federer. For those of you who don’t know, he is, most would say, the greatest male tennis player of all time (“GOAT”).  I’m more of a Federer fan than I am a tennis fan.  It all started when I met Josh, who was and is a lover of all sports (other than hockey and soccer), but tennis seemed to throw him especially into alternating periods of gut-wrenching anxiety and euphoria, and Roger Federer especially so.  He would watch Wimbledon or the Australian Open matches on tape delay and absolutely despair when Federer dropped a set.  I didn’t know anything about Federer back then and thought Josh was just crazy; how stupid to care so much about two men hitting a tiny ball back and forth.  I’d secretly go on line and find out Federer had won the watch – Josh hates watching sports with anyone who already knows the outcome – and then tell Josh lovingly, “It’s going to be okay, honey.”  Then Federer was in his prime and racking up Grand Slam titles at an astounding pace as he sought to beat Pete Sampras 14 Grand Slam record.  Josh, as do most people, loves to watch dominance, to marvel at human physical excellence, and Roger Federer was a prime example of the incredible feats that the human body is capable of.  My feigned interest in basketball and football disappeared after we got engaged and then married, but my love for Federer persisted.

After our wedding in the fall of 2007, Federer began his physical decline. We would watch matches together with greater stress as the odds of victory decreased with the passing of the months and years.  When he sought to tie Pete Sampras’ record at the 2009 Australian Open, we got up at 3 a.m. local time to watch the finals against Federer’s arch rival, Rafael Nadal, the other arguable GOAT.  It was a disastrous match for Federer as he crumbled under the pressure of history.  Our household of two was in mourning that day.  And yet, I’m pretty sure that Mia was conceived that night – as they say, out of the ashes of defeat…

When I was seven months pregnant with Mia, we forked over the big bucks to go see Federer play in the 4^th round at the U.S. Open on Labor Day.  We sat in the front row, right behind the service line.  You could see us on TV all day long.  I was in ecstasy to have my tennis God so close.  After his match (which he won against former number 1 Layton Hewitt), we were treated to a match between little known American Melanie Oudin and Maria Sharapova and then Andy Roddick against John Isner.  What was supposed to be the day session lasted long into the night, well after nine o’clock.  I have a collage of photos from that day with Josh hanging on my wall.  It was perhaps one of the most special days of my life, not the least of which because I got to share it with Josh.

Federer would make it to the finals of that U.S. Open but he would lose to Argentinian, Juan Martin del Potro. Josh went to the finals while I stayed home to watch.  He would call me during the commercial breaks to give me his impressions from the court.  I would tell him what John McEnroe was saying on TV.  I had become as crazy as he.

Federer, however, would go on to win more slams. The last, #17, was at the 2012 Wimbledon.  The morning of my colonoscopy on July 7, 2013, the day I was diagnosed with colon cancer, Novak Djokovic lost the Wimbledon final to the hated Andy Murray: Federer had been eliminated in an earlier round. How apropos.  Josh had watched the match early that morning before he came to the hospital to be with me as I was wheeled away.  We were in California which meant even more of a time difference.  Wimbledon barely registered to me that year.

The following year, Federer made it again to the Wimbledon finals. As I had so many times before, I watched in my apartment at home, glued to the TV and yet throwing a blanket over my head during the high pressure moments.  Even though I knew it was ludicrous, I told myself that if Roger Federer could win another slam despite becoming an old man in tennis terms, then I could beat cancer.  Of course, at that point, my cancer had not metastasized to my lungs.  He lost in a five-setter to Djokovic.  I was devastated, for him, but mostly for myself.

In the years that followed, Federer didn’t win. He made it deep into many Grand Slam tournaments, quarters and semis but no finals.  Injuries began to plague him as he moved into his mid-30s.  I stopped watching.  I told Josh it was game over for our beloved Federer, that it was time for Federer to retire with grace, that I didn’t want him to be humiliated by these younger guys.  Josh never gave up on him though, never.  Josh believed as I have never seen anyone believe.  He kept telling me that as long as Fed could go deep into a Grand Slam tournament, he still had a chance.

Federer cut his 2016 season short by six months to recover from knee surgery. No one, including him, was expecting much at the Australian Open, the first Grand Slam of the year (i.e. last month).  Even so, he looked good in the rounds leading up to the finals.  I still wasn’t watching.  Josh questioned whether Federer should even strive to make the finals because it was looking more and more likely that he would meet Nadal there, at whose hands he had suffered so much defeat; Nadal had long ago gotten into his head.  Could Federer handle yet another defeat?  Could we?  I told Josh I didn’t think I could bear to watch another defeat and to Nadal no less.  It would simply crush me.  Josh got up early to watch the finals on tape delay, with me rising soon thereafter (after I had of course looked online to see that he had been broken early in the fifth set – not good at all – most assuredly he was on his way to losing).  But I got up anyhow to support my devoted husband, with the slimmest of hope in the final outcome.  Josh confiscated my phone when he saw me trying to sneak another look at a live update. So I really had no idea what was about to happen.

Somehow, some way, with the momentum against him, Federer dug deep and held serve and proceeded to break Nadal to level the set, held his own serve easily again and then broke Nadal again. He won the match soundly shortly thereafter.  Josh and I, our hearts racing, were jumping up and down, dancing for joy, hugging, kissing, high-fiving.  The kids would definitely have thought we were certifiably crazy but we had locked them in our bedroom at the far end of the apartment and had turned on nonstop “Monster High”.  In his post-match interviews, Federer spoke of how sweet this victory was, given that it had taken him so long, given how hard he had worked, given his age, given all the naysayers.

Josh never stopped believing in Federer. He has never stopped believing in me either, never.  Even when I’ve said that it’s game over for me, that I am dying.  I told him that this past birthday would be my last.  My emphatic statements and the disheartening scan results no doubt have made him question his own belief, but he still held firm.  I told him he was delusional, that he just couldn’t accept my death, that he had to tell himself I still had a chance for his own sanity.  He would look at my skin and watch how I move about and he would say you’re not dying.  He would say as long as you are still playing, you still have a chance.

Federer won and I felt like that was a sign in late January, that I had to actually start listening to my husband. Horror of horrors!  But what was I supposed to do exactly?

I belong to a number of Facebook groups and online forums where people with colorectal cancer talk. There is one group that is devoted solely to clinical trials.  I also have an online friend, who I’ve known for a few years and who is a guardian angel of sorts; she’s a guardian angel to many.  She herself does not have cancer but she is a superb researcher and remains informed about trials and the latest research developments.  Before I was kicked out of my last trial due to progression, she had alerted me to another trial at Memorial Sloan Kettering (MSK), a trial to which two people in the online community have responded well, as much as 30% shrinkage and disappearance of mets, an immunotherapy trial no less.  It has become clear that immunotherapy is where the future of cancer treatments is and as I’ve indicated before, immunotherapy is being used effectively now to treat a minority of colorectal cancers, those considered MSI.  I am MSS, as are 85% of CRC patients. 30% shrinkage for MSS CRC is astounding, practically unheard of really.  This trial, which I will call RO688, involves the combination of Atezolizumab (an anti-PD1) and RO695688 (an antibody that attaches to CEA (a protein frequently produced in high amounts by CRC tumors)).  Both theoretically work by identifying the cancer cells to the immune system and signaling the immune system to attack.

So after Dr. V gave me the bad news from my scans, I immediately asked her about this trial. She hadn’t heard of it but went to inquire on my behalf.  She came back and told me there were no more spots at MSK.  I had heard this from my online community as well.  Oh well…  I would inquire at other sites.

The next day I called the toll free number on the clinicaltrials.gov page for the RO688 trial. The number was to a nurse at the pharmaceutical company and the trial’s sponsor, Roche.  She gave me a name and contact information for a person at MSK and Yale.  I called and emailed the person at Yale but it was a bad contact, a random oncological pharmacist (the person who mixes the drugs).  I called and emailed the person at MSK.  I would later learn that she was a research assistant.  She emailed me back promptly to tell me that she wasn’t in charge of this trial, that rather, her colleague, P, was in charge, and she copied P on her response to me.  I actually knew P!  P was the 20-something year old kid who had come in with the consent form for me to sign for my previous trial at MSK, the one I had just failed, the one that had caused me to lose all my hair, you know, that one.  P was a kid.  I asked him some questions but at the time I was dismissive.  I mean, what could this kid possibly know?

How wrong I was. P told me that he was expecting more slots in the RO688 trial to open up later that week or by the end of the month (December) at the latest.  He would let me know.  I didn’t hear back from P.  Then, the immunotherapy department at MSK, a completely different group, called to offer me another trial.  I knew someone from my online community who had been on that trial and it had landed her in the hospital for a week and had done nothing beneficial.  No thanks!  Back to RO688.  Then, I had an appointment with Dr. V on January 6 (my birthday).  We didn’t have much to discuss since I had already started the Lonsurf and Avastin with Dr. AC.  I told her I wanted to talk to P.  She left and P came in and he told me a lot about the trial – preliminary data (albeit in very general terms but it confirmed what I had heard online and suggested that the positive response was much greater than just the two people I personally knew of), the history of the trial, how the cohorts and accruals work, side effect profile.  I bombarded him with questions.  P is a great guy, young, but smart and funny and very nice.  He told me it would not be until February or March until the next cohort would start; cohorts are launched on a worldwide basis with the sponsor deciding which institutions will receive the available spots.  MSK being MSK was always assured at least one spot, but he encouraged me to pursue Yale as well, just in case.  I was happy with that.  February wasn’t that far away, and in the meantime I would set up an appointment at Yale; Yale is 2 hours away, not ideal but I would make the commute if I had to.  I warned P that I would continue to be a nuisance by bothering him with emails asking for updates.

Then, about 1.5 weeks ago, I heard from another source that RO688 had been suspended because the sponsor was investigating the death of a patient in Europe who had been on a similar trial. I thought for sure then that the trial would not be reopened for months.  I could feel my abdominal tumor growing bigger.  I went in for treatment last Monday complaining about the tumor to Dr. AC and his staff.  The nurse poked around the area and that was it.  They could do absolutely nothing for me.  A part of me was incredulous as I realized that all these medical professionals were just going to let me die.

And then the next afternoon, P called me while I was sitting in the ER with Josh no less – everything is fine. The sponsor had just announced the opening of six new slots, all at MSK.  They were in a hurry to fill those slots as the next cohort was to start next month.  P was coordinating with Dr. V’s office to get me in to sign the consent by Friday.  I could hardly believe it!  Really?

I waited for the call from Dr. V’s office with my appointment time. Wednesday my designer was at my apartment with her interns all day doing a photo shoot – I will share those photos when they’re ready.  Wednesday night I went to see Hamilton – 5^th row seats with my friend who pulled some strings to give this to me as a birthday gift.  Thursday was a blizzard so the kids were at home, which always keeps me busy.  Thursday night, my good friends took me and Josh out to a 25-course tasting menu dinner at Blanca, one of the two 3-starred Michelin restaurants in Brooklyn.  And then Friday, at last, I went in to sign the consent, preceded by a lengthy discussion with the clinical nurse, P and Dr. V.  I then had 10 vials of blood drawn and an EKG, after which I had to commute over an hour to pick Mia up from a play date, traipsing through the snow.  And in between all that, throw in the usual music lessons and practice, cooking, morning and bedtime routines, walking the dog, doing laundry, cleaning.

Woo! I’m exhausted just remembering it all.  I guess Josh is right – I’m not dying yet.  No one who is dying can be that busy!

P is my secret weapon. Many want in on this trial, and some of them have much more preeminent oncologists than mine.  They would ask their oncologists about this trial and their oncologists would tell them the same thing my oncologist told me – that it’s closed.  None of them had P though.  P was my vital source of information.  Of course, I, as does everyone else still needed to go through my oncologist but P kept my oncologist informed; P came to her and said, “This trial is open again.  Julie wants this trial.  Can we get her in?”

I was emotional when I signed the consent. It feels like I had been waiting for this trial for so long, even long before I was aware of it.  It is the only immunotherapy trial I know of that has shown real efficacy in the clinic (as opposed to in mice).  Yes, there’s the TIL trial out of NIH that has been getting a lot of media attention of late but that has only been effective for one patient out of many, and the demands of that trial are quite rigorous (i.e., invasive surgery to harvest enough tissue, re-implantation of genetically modified tumors, intense chemotherapy, multi-week hospital stays).  There’s also the Atezolizumab and Cobimentinib trial that generated so much excitement at last year’s ASCO conference, the one that skipped the Phase 2 process entirely based on its Phase 1 results and went into Phase 3, but the anecdotal evidence I’m hearing online has been horrendous for that trial.  The first experimental treatment I did last summer, involving the combination of radiation and an anti-PD1 and CTL4 was something Dr. AC proposed.  I agreed to it because there really was nothing better.  After that failed, I ran to MSK and they offered me the SGI-110 (non-immunotherapy) trial, which I agreed to because I just desperately wanted someone to tell me what to do.  I didn’t ask about results at all.  Dr. M (a big name in CRC) at Georgetown told me it was a reasonable trial to do so I did it.  After that trial, I swore I would not do one again for which there were no evidence of efficacy.  This will be the first experimental treatment that I have actually sought, that I actually believe might do something, that I actually believe has promise, for which, with the exception of the above) I’ve actually seen / heard of clinical evidence of real efficacy (as opposed to just stability).

I have worked hard to get to this trial. I have endured treatment after treatment.  I have spent hours online, learning and cultivating relationships.  I have used every ounce of intelligence, charm and wit I possess.  I have prayed relentlessly to a God that I have grown to believe in more and more.  I have battled the mental demons, suffered the physical and emotional pain, to live my life as normally as possible, to be a loving and present mother and wife, all to be healthy enough to embark on this.  P told me that while they had been considering others besides me for the six slots, those people had proven to be too unhealthy to undergo the rigors of the trial.  I am grateful to whatever gods may be for my continued strength and well being.  I think of my friends, Colleen and Rachel, mothers and wives who were diagnosed within months of me and who died within weeks of each other last year.  What they wouldn’t have given to be in my place, to have this opportunity, to have a real chance at immunotherapy.  I am grateful that I was diagnosed at a time when immunotherapy was just coming onto the scene and am amazed at how the landscape of clinical trials has changed in the 3.5 years since my diagnosis.  I am humble in my gratitude.

There is still much to be done before I can even receive the first treatment. Pathology slides must be secured from old tissue.  MSK’s labs must test them to ensure that they express CEA.  CT, MRIs and PET scans must be done.  A biopsy must be done and that tissue must also express CEA.  Hopefully, they will go after my abdominal tumor since it feels so close to the surface and there will not be a repeat of the horrid lung biospy.  Hopefully, my cancer will continue to produce CEA and ideally even more CEA since RO688 goes after CEA.  Then, there are many more vials of blood to be drawn and more EKGs and other tests to be done.  I will be at MSK a lot over the next few weeks.  And then, if I make it to the first treatment, I will be spending 1-2 nights in the hospital for observation.  People have been known to have severe reactions after the first dose, including inflammation, fever and intense pain.  I will be looking for help with the kids during that time.  Treatments are weekly after that (so no exotic vacation plans for us) and lots of blood draws and then another biopsy.

Thank you for all the thoughts and prayers. I humbly ask you for more now because there is still no assurance that I will get to the first treatment, no assurance that it will work, and if it does work, no assurance that it will work for any real period of time.

But I’m still here. I’m in the match.  I’m asking you now to believe, as Josh believes. I need belief because I’m afraid to believe that something like this could work, for however long.  I’m afraid to hope.  I’m afraid of the crushing disappointment when it comes. But what is there to do but to take the fear in my hands and move forward with Josh’s belief and your belief in me?  That’s all.  The match must be played.  I can show up for it or not.  I choose to show up..