Promised Update: I'm Off This Trial

Hi all,

Thank you so much for all the messages of support. Hearing from far-flung friends and family really does mean a lot and really helps me feel less alone in this. (Also helping me feel less alone are all the local friends who have come with me to appointments and provided support--emotional and practical--over the past year. They've especially spent a lot of time in Philadelphia traffic and for that I especially thank them.)

The news today was pretty much as expected: significant growth in the primary tumor (bad), but no new growth in the metastatic sites or any further spread (good!). I'm off this trial for now. We'll see what's next once I talk to my supervising oncologist in Boston on Thursday. There are a couple more trial suggestions, though unfortunately at last one involves chemotherapy. I'll let you know more when I know.

Love,
Rebecca

All I want for Christmas...is a working cancer treatment

Hello friends,

It's getting to be that time of the year again. No, not Christmas, although I'm reliably informed that it will indeed be happening again and soon (a thing I, who haven't bought or made a single gift yet, can't quite believe). It was this time last year that I first called my doctor about the mass in my breast that had become too large--and too tender and painful--to ignore any further. They didn't see me right away...because of the holidays and because for someone with my risk level (basically 0 - at age 34 with not a single person in my family with breast or ovarian cancer) it didn't seem urgent. It was. And now, tomorrow (Tuesday the 17th), I'll be heading into my oncologist appointment at Penn expecting to hear, based on the results of my scans from Friday the 13th (spooky!) that the initial tumor has gotten bigger again and that I will need to leave the clinical trial and pursue other options. I'm expecting this, though I hope desperately to be wrong, and have a visit to my supervising oncologist at Dana-Farber in Boston planned for the 19th. From there I'll go to Christmas in St. Louis and New Year's in Boulder before returning home to whatever new treatment 2020 has in store. Now, obviously I hate that I'm going through this at all. After I heard about the tumor growth last month I was crushed that I hadn't even managed to make the average time that participants in this particular trial found to make a positive difference (6 months...I got 4). And I still am crushed. I'm not going to lie and say that I'm over it ,or not furious, or not disappointed. But what I especially hate right now is that it feels seasonal and like it's going to ruin my holidays again and stretch on through all the coldest and most miserable months...just like last year. It's a series of bleak anniversaries that I was already dreading even when things were going well. And now that they're not, well, you can imagine how dread is compounded with fear, anger, and sadness.  Since not all of you were there (and since this blog did not exist) let me tell you a little about what it was like at this time last year. As I said above, it was around now (December 19th, actually) that I first called my GP's office to talk to them about the lump I had been aware of (but not really concerned by) for a few weeks. It's likely that it was around for far longer than that - long enough, certainly, for me to be diagnosed Stage 4 from the start. There are a lot of reasons why I didn't "catch it" earlier. (I actually hate this phrasing. It makes it sound like I could or should have been more vigilant and thus bear responsibility for my own illness.) I won't go into them here except to say that the previous year had itself been the worst of my entire life. There was a lot of loss and it's not really an exaggeration to say that it annihilated me. But I was able, with the support of friends and family, to reconstitute myself. I was proud of having done it too. What I didn't realize, though, was that in rebuilding myself some parts were coming back...wrong, almost as though psychic damage had been written on a cellular level.  “Did you know?" "Could you tell?" Nearly everyone asks me these questions, or some variation on them, at some point. I would say that I’d like to ban them from all discussions except that they are all I think of all day, asking myself: Did I know? Could I tell? And (more accusatory) “Why didn’t I know? Why couldn’t I tell?”. Despite knowing better, I still often believe that I brought this upon myself. I believe that I should have noticed sooner or, when I did notice, I should have acted faster. But, the thing was, I just couldn’t stand for another thing to go so horribly wrong in my life. So when I look back at this time, the time before I was aware of a lump in my breast, I can hardly fault myself for not noticing. I first felt that something was wrong with the swelling in my breast that would not go down around Thanksgiving 2018. I Googled furiously and convinced myself repeatedly that it was probably hormones, a cyst, or an infection. I assessed my risk factors (0) and and the chance that something so terrible would happen to me right after this other terrible thing had happened. Surely, I felt, the universe couldn’t be that cruel. I called in mid-December and my doctor’s office told me it would be hard to fit me in around the holidays. What I described sounded like it was probably benign and, since my risk level was so low and since I had even had it confirmed that I was cancer-free in 2016 (when they did a spinal tap because my chronic fatigue was so bad and my white blood cell counts so high), they advised me just to come in when I was back in January. I stayed in St. Louis for a memorial service, celebrating the life of the woman who was effectively another grandmother to me--my parents’ oldest and dearest friend--and had a strange feeling the whole time. I remember sitting among her very many friends and family, surrounded by photographs and poetry and music and all the signs of how loved she was, thinking with an improbable certainty that people would soon be remembering me this way and hoping that they would say I had positively affected their lives as much as she had. Meanwhile, the swelling was huge. It was hot to the touch and ached like a bruise. I tried to see this as a good thing; heat and redness mean infection, which meant it was probably mastitis. I was worried enough to call my parents’ doctor to ask if I should go into the cancer center at Barnes-Jewish Hospital. He said the same things about how unlikely it was and how it was probably infected. I saw my doctor when I returned and, worried, she nonetheless prescribed me a course of antibiotics. She was also hoping, I think, not to be confronted with the truth.  The antibiotics upset my stomach terribly as did my constant anxiety. After five days with no effect, she gave me a stronger one, which also did nothing. It was now ten days since I had talked to her, a full month since I had first called. She sent me for a biopsy. It was on the 21st of January. On the 24th I heard that the tumor was cancerous. On the 28th, I heard that my cancer was also in my lungs and that I would need more scans and MRIs to determine the full extent of the metastasis. Then the terrifying and seemingly endless cycle of scans and bad news began. I don’t want to rehearse that here, though these months hold a series of bad anniversaries for me. What I want to do is to say that, at a certain point, of course I knew. Unlike most people in my life, who regarded the biopsy almost as a formality, I absolutely thought that I had cancer. Maybe it was just because I try to prepare myself for the worst. (I was still notably unprepared for this.) But maybe it was because I knew my body, even on a subconscious level, and could tell something was amiss. I do have a sense, too, of when treatments are working or not. I can’t tell you the extent of why I know, often, but the tumor itself is one indicator. It’s very large and when things aren’t working it gets even larger. It ambiently hurts all the time, in a way that is subtle and that it is easy to almost (but never) forget and that is too minimal to mention to people. (Actually, these past two days it has hurt so badly that it feels like someone punched me. I cannot take this to be a good sign.) Since I heard my latest results from my doctor a month ago the tumor has gotten bigger. I probe it all the time, examining myself in the mirror from different angles--bra off, bra on--like when I was so desperately hoping to grow real breasts in middle school. I assess how far it sticks out in one position vs. another and how red it is at certain times. I try to convince myself that the pain is hormonal, that the apparent growth is how I am standing. But that’s just repeating what I was doing at this same time last year, casting around hopefully for an explanation that isn’t the one I fear. For tomorrow, I hope for the best, but I expect the worst. It may be that you think I’m too worried too soon; I know some of you may. And let me tell you that, although it's contrary to my nature in general, I would love to be wrong. I hope I am. I will do my best to share news here, even in a short post, since I know that those of you along for the journey will be anxious to know too. For tonight, I'm scared. I'm better able to cope with bad news once I know what it is and am able to make a plan or a choice - to exert some control. And I'm certainly (sad to say) not feeling much of the spirit of Christmas, which is a shame since I actually love it. If you have extra love or cheer or, heck, any Miracles on 34th Street (I'm willing to commute!) please send them my way. Love,

Rebecca