My brain wants to shut down and my body wants to give up. I can’t make them connect right now and despite trying to keep afloat with humor and a “we’ll beat it again!” attitude, I’m concerned that I’m running way too far past empty to keep up this charade.
For those of you who don’t know, Ben has relapsed again. SIX times my son has battled this insidious fucker. I sincerely don’t know how he keeps going. I truly don’t. He continues to be so brave and strong. And while I try to keep a brave face a lot of the time, well, I’m just out of energy. My emotions are completely exposed like raw nerve endings most of the time.
I noticed right before we left for NYC that Ben had turned a picture of himself around to face the wall. This picture showed his wonderful and insightful smile, those deep and knowing eyes, and a completely bald head. He looks that way more often than not but he had reached a point where he was tired of looking at that image. He admitted that he was the one who had turned it to face the wall because he didn’t like looking at himself when he looked like a cancer patient. I honored his request and took it down because I just don’t ever want him to feel unhappy. Besides, we were in the throes of an amazing winning streak against cancer. We felt the vaccine was working and was even scheduling an appointment on getting his port removed when we returned to Denver. THAT was an epic milestone! To not need his port any longer was thrilling to me… and to him. However, we all know now that port removal won’t be happening anytime soon.
This trip to NYC was a regularly scheduled visit. He needed injection #5 of the vaccine and a set of scans. My sister came in to NYC for the day, so we were sitting together on the plastic couch in the waiting room while Ben was undergoing his bone marrow biopsy. I usually stink at having people sit with me during procedures because I seem to be more comfortable in my own head. It’s no news that I’m an introvert and tend to want to handle things on my own, but having her there was really nice. So, when I heard Dr. Kushner talking about Ben Brewer, I turned to wave him over to us. After a brief introduction to my sister, he simply said it: “There’s a new spot.” As that information was trying to penetrate my brain, I worried about how I was getting ready to lose it in front of every person in that waiting room. I kept nodding my head and trying to listen, hoping I was catching what needed to be caught, but everything was buzzing. And I was sincerely worried that I was going to scream right there in the middle of that busy waiting room. After the news was delivered, we were able to go into an office where I did lose it.
Now, I’ve been doing this for a long freaking time. And maybe I should be used to hearing that my son’s cancer has returned. But let me make this very clear: I WILL NEVER BE OK WITH CANCER ATTACKING MY SON. Not the first time, and not the sixth time. And if there’s another time, I won’t like it then either. I understand that I’m “old hat” at this, but it never gets easier. NEVER. And I am offended by people who have said “Oh, it’s just one little spot” which, I shit you not, is what one of the nurses said to me.
Fuck that. ANY cancer attacking my son WILL NEVER BE OK.
So, they gave us a plan right away. And being the compliant person I am, I agreed. Of course, this was all done with Ben’s consent, but my thought was get that cancer out of there NOW. Surgery was scheduled for two days later and a whole extra shit-show of incompetence happened after that. I am not going to go into details here but let me say this: We have officially broken up with Memorial Sloan Kettering for treatment.
This makes me terribly sad. In 2010, Dr Kramer, who was heading up the relapsed neuroblastoma study at MSKCC said the following: “I believe your son is curable.” It was what I had been waiting to hear for years. And, for some idiotic reason, I believed her. I hung a lot of hope on those words. Now, seven years after that initial relapse and giving this institution chance after chance after chance to treat my son with some dignity, since he relapsed on their “Holy Grail” of therapy, there’s no need to continue. It just doesn’t make sense.
On our flight home, Ben leaned into me and said “We travel here to receive CARE. It seems pretty clear to me that they don’t care about me. I’m just a number to them.”
We got home on a Friday night. Ben was coughing quite a lot, which could have been his lung’s way of trying to get stronger post surgery, but since it persisted through the weekend I took him to Denver Children’s Monday morning. We met with Flori, his usual nurse practitioner and SHE HAD NO FUCKING IDEA THAT BEN HAD RELAPSED! She didn’t know that he had surgery over a week ago. She had no information. So I had to explain where it was found. I had to explain the procedures he had just had. I had to explain what the next steps were. I had to call MSKCC to get the records transferred. Of course, I was sobbing throughout the entire ordeal because WHY WOULDN’T THEY HAVE THE COMMON COURTESY TO LET HIS HOME HOSPITAL KNOW WHAT WAS GOING ON????
Dr. Macy came in to talk with us and was very frank. She asked why we would return to receive a therapy that didn’t work. And given all the stuff that went wrong during that visit, why would we want to keep taking on their inability to offer my son any quality of life.
And that’s what shocked me into understanding. They don’t expect him to have any quality of life. Ben said, “They’re probably just surprised that I’ve lived this long, so they just throw whatever they can at me to see if it works.”
Does Dr. Macy think the cancer will return again? Yes. She expects it to keep popping up here and there for the remainder of his life. And then she threw in the “whac-a-mole” comparison, meaning that whenever it does come back, we’ll hit it with whatever study is available. Keep beating it down whenever it shows its ugly head.
We’ve also learned that the radiation therapy they were planning in NYC was nothing like what the radiologist here in Denver would do. NYC was basically going to throw five big doses at him, where Denver said it would be safer to do a lower dose over 12-20 visits. Glad they forced us to get a second opinion.
I don’t know what’s going on there. And if they do eventually find the golden ticket that cures neuroblastoma for good, then Ben will be able to receive it. They can’t deny him treatment just because I’ve called them on their incompetence. But I have to say that I am highly distressed. It’s taken me almost two weeks to be able to say anything at all. I’m feeling very defeated for a variety of reasons.
I’m sad that this “lifeline” didn’t pan out and did more holding us under water than trying to keep us afloat. I cannot say this has been everyone’s experience, and I’m sure there are plenty out there who are extremely satisfied with their experience at this institution.
Good for them.
But, for now, we’re going to navigate treatment here in Denver.