Always Waiting: The Cost of Never Being Done

Hi all,

I kept waiting for a time when I felt like I had time and energy to write and...surprise! It turns out that's not just around the corner when you have a chronic illness and are still working full time (not to mention trying to keep up a social life and maintain all your relationships). But I figure some information is better than none at all, so I'll get through what I can.

You all remember (I think) that I went to Dana-Farber after my December CT scans showed significant growth of my primary tumor despite the metastatic sites holding steady. I came out of that meeting with two recommendations for clinical trials. One--my top pick--was being run out of Massachusetts General Hospital and Dana-Farber and involved an antibody-drug conjugate (IMMU-132) that has been shown to be super effective for triple-negative breast cancer but which got held up at the FDA approval stage. Doctors are pretty frustrated that the approval is still pending and that the only way to use it is on a trial, but there's hope that it might get approved in the next 6-9 months. The other is being run out of UPenn by the same doctor whose study I was on before and who I really like. It looks at the effect of chemo + an immunological agent vs. just chemo.

There were several reasons to prefer the MGH study (even though it would have necessitated traveling to Boston during the coldest months of the year), among them that I wouldn't have to endure chemotherapy as part of the trial. And it looked for a while as though I was going to be able to join it. It wasn't actively enrolling but there was a spot. I waited, in the days right before Christmas, to hear. And my doctors all worked hard, calling the PI and discussing the option of enrollment at either location. But it didn't work out. Another patient made exactly the same call I would have made--and I cannot fault them for that--and I am several places down on the waiting list. Spots open up when people leave the study, so presumably when their disease worsens or a better treatment option opens up. It only happens every couple of months. Doing the math, it seemed more likely that the drug would get approved by the FDA than that I would get to enroll.

I was pretty angry. And it was hard because there was no single person to be angry at. Not at my doctors, all of whom knew my preference, did all they could, and gave sincere apologies when it didn't work out. And not at the other patient who took the chance that I so hoped I'd be given. If anything, I was angry at the FDA for not approving the drug faster, or at whoever was funding the study for not allowing there to be more than 68 patients on it at any given time. The fact that groundbreaking, life-saving medical research is also a business constantly makes me angry. Sometimes it works in my favor (IMMU-132 will likely get fast-tracked on its second go through the FDA because someone will make money) and sometimes it doesn't (why fund more spots than you need on a clinical trial just because people want to be in it?). 

So then there was more waiting. So much of having Stage 4 cancer is a waiting game. Waiting for promising new research directions. Waiting for that research to get funded. Waiting for those studies to enroll and complete. Waiting for FDA approval. Waiting for insurance approval. And, the biggest one by far, waiting to see if it works.

I was home for the holidays, not meant to see an oncologist until mid-January. A third option was proposed, which was staying on the study I had been doing with the PARP inhibitors but first doing a short course of radiation on the breast tumor. When I got home at New Year's I booked in to a radiology consultation, even though I felt a suspicion that it wasn't the best option. (Several oncologists told me that if the PARP inhibitors had stopped working on the initial tumor it was only a matter of time--and likely not much of it--before they stopped working on the metastatic sites too.) After spending nearly an hour with yet another very helpful doctor who had studied the whole history of my case (and a little bit of my research, once I told him what to Google) I saw that I was right. A tumor this size, he said, would only benefit from a pretty lengthy radiation course and we only had a grace period of 2 weeks for me to get back on the PARP study. He reminded me that it would be an option later and wishes me luck.

I'd like to pause here to do something I haven't done before and ask you all a favor. I understand exactly why this happens but please, to help me out, don't ask anymore about why I am not (yet) having surgery or radiation on the tumor. Yes, the primary tumor is the biggest and nastiest and pains me every day. You can be sure I'm also asking that question of my doctors, not only when there's a treatment change but when I tell them that it's hurting me. I know that it seems simplest to just cut it out (even if this means altering my body in a way that I am not eager to do) or try to shrink it. And I know that's why people ask. All the time. ALL the time. Unfortunately, it leaves me feeling defensive--do they not know that I have thought of this option every single day as I carry around the painful, swollen weight of a 6cm tumor?--and like I have to justify my decision. I imagine one or both those things will happen immediately. I have many (medical) reasons for not doing them yet. When I decide to do them, you will know and I will tell you more about why. But it would make me feel a lot better if I knew people weren't going to keep asking. Thank you.

Ok, back to what happened one I decided that radiation was out. Essentially, last week I officially consented to the study that's at Penn and that involves chemo. My first session will be on January 30th. I'll be going every 3 weeks. The agent I'm receiving is one of the oldest (carboplatin) and will be given in a higher dosage than when I went every week. This means it's likely to make me sicker. (The doctors did say that I'd feel worst on days 2-5 and better as the cycle wore on.) No one told me that people tolerate this one especially well and, having been so relatively lucky with side effects before, my worst-case-scenario brain assumes my luck will now be bad and that I will really struggle, lose all my hair, not be able to work, etc. Unhelpfully, although they can speak in averages, no one can predict how anyone will react to chemo. So just...wait. As usual.

To join the study, of course, there are a great many hoops all of which involve trips to Philly. I had a biopsy yesterday (Wednesday) and am spending tomorrow (Friday) getting CT and bone scans. There was an ongoing fight with my insurance company today when I got a phone call first thing in the morning telling me that they had canceled tomorrow's CTs because I didn't have authorization. Without authorization, no CT. Without a CT, no joining the study. Without joining the study, no starting chemo on time (lots of rearranging of my work and ride/support schedule). Lucky for me, my doctor's office was the one to do the calling and arguing. But it's frankly absurd to deny authorization for a CT scan to a documented Stage 4 cancer patient. I cannot even imagine what further information they would need for that one. And if I hadn't been joining a trial there would have been no rush and, likely, I would have been the one calling. The amount of admin involved in being chronically ill is frankly staggering. The end result, luckily, is that I am going in tomorrow.

And that's why I must get to bed. I know I make it sound like swinging by the hospital for a biopsy is no big deal - it's an outpatient procedure with only local anesthetic! I ate Shake Shack afterwards and went to work today! But, in fact, it's stressful to the body as well as the spirit to be on an operating table, numbed up with local anesthetic, and pierced in the lymph node or breast by an ultrasound-guided needle ten times (because you are doing so many studies and they all need research samples). The scans tomorrow will be easier - all I have to do is not eat beforehand, drink barium, lie in an x-ray contraption while having contrast dye injected through the port that's plumbed into my artery...then take a break before being injected with a radioactive tracer that will infuse my bones for a couple hours until I lie perfectly still and have them imaged. Easy, right?

I like to say that this stuff is no big deal--that it's just a lot of waiting in different places. And that's true, to an extent. The CTs don't hurt and they aren't physically demanding (although I'm not great at drinking that much barium milkshake that fast). The bone scan is kind of cool and I plan to wear my "Biohazard" t-shirt. But my normalization of the massive apparatus surrounding being ill and my incorporation of it into my everyday life does, I think, minimize the physical as well as emotional toll I pay each time I have a test or treatment. Not only are those reminders of the insidious disease that has taken so much of my life from my control--I'm not even thinking about that consciously most of the time--it's just all so relentless. There's always another call to make, appointment to keep, symptom to track, bill to pay, person to text or call. I am never, ever done.

On that last item, I do often feel burdened with guilt. I want support, but don't feel that I can always pay it back in the form of updates or thanks to those who so generously give it. But I do hope you all know that I'm here, appreciating each and every piece of it that I get. Social media may not be great for some things but it is wonderful for the small kindnesses that can buoy me up on a tougher day. This has been one, so I'm off to bed. But I send you gratitude and love.

Rebecca

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

You can't win 'em all! (But I didn't lose either...)

Hello friends,

I'm here trying to be better about passing on news when I get it instead of needing to have a whole essay worked out about my response to it. I saw the oncologist at Penn today to hear about the results of my scans from Friday and they are not as bad as I feared, but not as good as I hoped. I'd had a bad feeling about this one, which you certainly can chalk up to my general tendency to hope for the best but prepare for the worst (a trait that has a lot of downsides but which does, in a funny way, give me a fundamental confidence in my ability to cope), but which may also have to do with my subconsciously knowing things about my own body. But that's getting ahead of myself.

The results were positive in that, in all but one location, there was no change. The cancer did not move to any new locations and, in the metastatic sites, it all remained unchanged The only change was in the initial tumor in the breast, which had grown by 1 cm. Guess which part of this news I'm focused on?? Especially since, for a few hours, it wasn't clear to me or my doctors that I would be able to stay in the trial.

Let me say first that my team at Penn is amazing and they have done everything possible to get me information about my results as quickly as they can, as well as to work around my schedule to make visits easier, help me with my travel plans, etc. They gave me hugs of joy, when I had my first great news, and of relief, today when I did learn that I could keep taking the PARP inhibitors for at least another 6 weeks. I do very much feel that we're all in this together and I trust them implicitly. That's another reason why I'd hate to leave the study (aside from how few choices I have if I do). 

So, the situation was that they had seen my results and wanted to go into a meeting with me, where we were going to discuss them, knowing whether or not I was staying on the study (especially so that if I wasn't they could make sure I knew I had options). But the right person wasn't calling them back. So I was there and waiting and, when my usually prompt team didn't show up for 1.5 hours after the meeting time, I knew something was wrong. I felt it. They came in and told me that they'd take me through the results, but that we all had to wait in real time for the study coordinators to call back and let me know if that much more cancer was too much more cancer to keep taking the drug.

I've had a lot of people ask why it is that I have to leave the study if I "progress" (again, remember that for cancer "progress" is bad...it's the disease that is progressing and succeeding in its purpose, not you, who are trying to thwart it). The answer, I think, is that experimental design for cancer clinical trials protects patients by requiring them seek and assess other options if the disease is getting worse on the trial. They don't want any patients sticking around on it without knowing definitively that there is no better option. (It's also self-protective against lawsuits, I assume.) So the fact that they "kick me off" isn't because they are cruel, but because they want to make sure I'm not only free to choose another option but actively made to look into it.

The question my doctors and I (and the wonderful friend who was there with me) were waiting for an answer to was whether 1cm of tumor growth constituted enough progress to mean I had to leave. They decided it did not. It was a 12% increase and so much else had not changed that they determined I still had a "partial response" (that's a good thing) to the drug. So I get to try again for another 6 weeks before another set of scans and another decision point at which, perhaps, nothing will have changed or, perhaps, too much will have changed and I'll leave the study.

It's emotionally exhausting. I'm totally drained. I doubt I'll get rid of the mounting anxiety of these next 6 weeks either, particularly with the canary in the coal mine of this tumor (which is huge and easily visible just to the naked eye) to watch and prod and assess. I had thought it was getting worse. I was right. Did I know because I was so familiar with its size? Did I know because of intuition? Or some set of signals that my body was sending that I wasn't even aware of receiving or processing but did? I don't know. 

What I do know is that I have so far been uncannily accurate about what news to expect, excepting that fact that I was blindsided by being Stage 4. I felt as a fact that my tumor was cancerous from the point at which I called my doctor on. Every new set of MRIs and tests I expected to bring bad news and they did. I was sure the chemo wasn't working and, mostly, it wasn't. And yes, you could say that I was just expecting all the worst and then it turned out to be true. But I also knew with almost total certainty that the PARP inhibitors worked the first and second times...and that they hadn't worked this time. That's less predictable and, I don't think, entirely dependent on my mood. I suspect there are signals I'm sending, receiving, assessing, and internalizing from my body without ever knowing in any conscious way, a fact which fascinates me.

I need to head to bed since it's been a tiring day. But I was sure you'd want to know. Right now I'm not feeling great about the news, but perhaps when I process it more I'll see more of the good. Thank you for reading.

Love,
Rebecca

I Will Never Be Well: Why Good News is No News

I’m sure you’ve been wondering why I haven’t written in a while. Part of it is that I set myself a very high standard at the beginning and now feel that anything I write has to be lengthy, meditative, and circumspect. I’ll try to get away from that, so that I can share news when I feel I have any. That is, however, only part of it. The other, more substantive reason that I have for not sharing is that my last scans (on September 27th) showed good news. Although the initial tumor didn’t get any smaller a couple other ones did and—the real news—nothing spread or got bigger.

That’s great! Why didn’t I share it? Precisely because it’s great. Those results were really only the second time I heard anything like good news and part of me is filled with the fear, or even the certainty, that good news is in short supply and that I’ll run out soon. I don’t want to spread it too widely because I don’t want to get anyone’s hopes up, including mine.

I have actually found myself annoyed by people’s celebratory, relieved reactions to the news that the clinical trial has been working. “Sure it is,” I think, “but for how long?”. The truth is that nothing will work forever. The median time during which patients on the forerunner of this trial (those with BRCA germline mutations) saw improvement was 8 months. I started this trial in July. Even if I’m average (which, let’s remember, I haven’t been at any point in this entire process), that means timing out in March. (Happy birthday to me.)  

Now, I might be exceptional in the other direction. There are people on PARP inhibitors who have been stable for 3-5 years. That would be amazing. We can hope, and hope is certainly worthwhile. But the fundamental truth is that good news that I get is only good in context. And the context is still pretty terrible. I feel like people either don’t know that (not everyone has such an extensive and intimate understanding of cancer) or allow themselves to forget it (a luxury that they’re permitted).

The result is that I feel that, with very few exceptions, no one understands that I will never be well. I will never be normal. I will never not have cancer. This is what it is to be stage 4.

I had the opportunity a couple weekends ago to attend a pair of events at the Dana-Farber clinic in Boston, both specifically for unusual patient demographics that include me. The first was a summit for women under 40. The second was an entire day devoted to research into and strategies for patients with metastatic breast cancer. Both were well-attended—I’d guess 200ish people at each—with very little audience overlap. And, among those four hundred or so women, I still did not meet anyone who has my triple-word score of bad luck: under 40, stage 4, triple negative.

Because of this, even in the breast cancer community, even in the company of people I know do understand certain aspects of it in intimate, painful detail, I feel isolated and often experience empathy fatigue. Women at the first summit were at all stages and many were survivors. It was great to see so many people at my rough life stage who were coping with a variety of problems entirely different from those who are older, but I still felt like I didn’t quite fit. Because in this demographic, the stage 4 (also known as “metastatic” or “mets”) representation was pretty minimal.  

It makes sense. Typically, younger women’s cancer is caught earlier, informed as they are about early screening based on a family history or genetic predisposition. In addition, most stage 4 patients do not start out that way, instead experiencing the progression of the disease from an earlier stage at a limited point in the body. (And, if you’re still counting, this is a fourth thing that makes me statistically unusual: having a de novo metastatic diagnosis. I met one other woman who was stage 4, de novo, and under 40 and, while not triple negative, she also wasn’t married and didn’t have kids. I need to hang on to her.) Consequently, most stage 4 patients have been dealing with cancer for years already and tend to be older.

And also, of course, metastatic cancer patients tend to die. 

I can’t see any of you, but I can still feel you cringe at that. I’m not usually so blunt about it because it’s a harsh reality. But it is reality. We’ve moved beyond the stage—wonderfully, with incredible work and fascinating science—where, at least for breast cancer, “stage 4” equates to “terminal.” It does, however, equate to “incurable.” I have an incurable disease. And, the way things look right now, I will eventually die from it.

Now, don’t anybody say anything about getting hit by a bus, please. When’s the last time that actually happened, for one thing, and, for another, while many things are possible some things, like my life being ended by cancer, are more probable than others. We can hope it’s very eventual, or that circumstances change profoundly. The goal for metastatic breast cancer is to transform it into a chronic condition that can be maintained and controlled and, particularly for young women, be part of a long and relatively normal life. As normal as it can be with the constant, gnawing anxiety, punctuated by moments of terror at the idea that the treatment will stop working and that the cancer will grow again and that, maybe this time, they won’t find something to halt the progress.

This brings in the third rare group that I’m part of (one which doesn’t have its own summit): women with triple negative breast cancer. If you’ve been taking notes you’ll remember that this means my particular cancer cells don’t have any of the three receptors on them (estrogen, progesterone, and HER2) that open up other treatment options, like hormone therapy and Herceptin. I learned at this conference that only 15% of breast cancer is triple-negative. Multiply that by the odds of being under-40 and stage 4 and it’s…well, it’s apparently less than one in four hundred people, based on my experience. And I can’t help but feel bitter about that, try as I do to remain optimistic overall.

There is no “good” kind of cancer. (Not even “the kind that happens to other people.”) But, truly, there is a hierarchy of types and, within each type, a hierarchy of curability or treatability and, within that, a hierarchy of the ease of those things. Breast cancer is a better type than some (leukemia; lymphoma; pancreatic), well-funded and thoroughly researched. But within those parameters, I’m in the worst of the worst position. Most of the treatments that allow stage 4 patients to control their cancer involve hormone therapy and Herceptin, neither of which will work for me. Most of the new, promising research (aside from the study that I’m in right now) has to do with immunotherapy involving PDL1 – a protein on the cell surface that I don’t have.

So even though the generalities we speak in give reason for optimism, even at stage 4, for me all the particulars are pretty dismal. Yes, we hope that the treatment that’s currently working keeps working for a really long time. Yes, part of what I hope (intend!) to do is to stick around long enough for the science to get even better, for them to (for example) find other proteins on the cell’s surface that function like PDL1. For antibody-drug conjugates to really take off. For something as yet unknown to be discovered. I believe very deeply in the power of research medicine and it does give me hope. I’m always hoping.

Hope is the thing with feathers, but sometimes they get to looking pretty bedraggled. It’s easy to understand why I feel like, if the PARP inhibitors stop working, I’ve pretty much lost my only shot. Remember how chemo didn’t do anything? How my tumor got bigger and the cancer spread to my liver? Doing that again, looking for another clinical trial, and hoping that the science moves fast enough for me is all I would have if I had to leave the study. Which I’ll find out about in the next 10 days, as I check in for more scans on November 8th and hear results on the 11th or 12th.

So what’s the right balance between celebrating the good news—news good enough that after my September scans my oncologist swept me up in a hug—and remembering that, even in the best case scenario, my life will be filled with treatments that are long and painful and only effective for a limited period of time? And what about you all? How do you support someone through that? Do you choose optimism that can seem to miss the point, even coming off as naïve? Or a tempered realism that may seem not to offer enough enthusiasm to match a full understanding of the significance of good news?

I’m not able to give you an answer. The best I can do is try to give you some idea, through posts like this, what I’m facing and what’s going on for me, even when the news is good. But I will also try (when the news IS good) to share that information more widely. Because even a limited amount of good is, in a situation like this, worth celebrating.

Update: Short and Sweet!

This is just a quick update but I knew you'd all want to know...For the first time I had pretty much only good news from my CT scans! Everything either stayed the same or got smaller - a lot smaller in some cases! 

For those interested in the clinical trial aspect I may post more details later; apparently any decrease in tumor size greater than 30% is a "partial response" and is a significant finding from a research standpoint. My initial tumor and my lymph node both decreased by more - closer to 50% - which is also good news for getting this on the road to FDA approval (and use in other patients). My doctors were, I think, almost as excited as I was.

I confess I was daydreaming that the cancer would just be GONE but I knew that wasn't realistic. This is the best result I could realistically hope for. I get to stay on the clinical trial and hope that things continue to shrink. 

Thanks to everyone for all the love and support - it made the wait a lot more bearable!

Scanxiety: And you thought the SATs were bad!

Hello from the land of Scanxiety!

That's a portmanteau that I learned from the online cancer communities I'm in that is (you guessed it!) a combination of the terms "scan" and "anxiety." It's what happens in the days leading up to and immediately following the imaging scans (typically CTs, sometimes PETs or MRIs) that cancer patients get to assess whether the disease has "progressed." Now, bear in mind that in cancer-speak progress is bad. Progress is from the perspective of the disease, meaning that it's been marching on ahead despite your best efforts to stop it. CTs occur every 2-3 months (or at least mine do...I assume if I had no sign of disease for longer they might be less frequent) and they are the metric that tells you whether the treatment you've been enduring--have been pinning your hopes on--is working. Or if it's not.

Basically, these assessment scans are the worst test you can imagine taking. You do everything you possibly can to prepare, assiduously infusing yourself with poison or swallowing pills that lead to instant (though manageable) acid reflux and nausea, trying not to care as your hair falls out or your muscles seize or the nerves in your fingers die. (All, let me remind you, "good" side effects on the scale of cancer treatment that I have been very "lucky" to get away with; these are relative terms but I've seen the alternative and they are still really meaningful to me.) You prepare and you suffer and you endure and you hope it's enough. You're fundamentally powerless over the outcome (unlike with any other test overachievers like me are used to taking) but you hope and you hope and send out pleas and prayers that it will be enough. And often it's not.

Every time I've had a CT scan it's been bad news. My report from January was the one that showed that the disease was metastatic (boy, was it ever!!). My report from March suggested that my previously safe liver had been affected after all. My report from June determined that chemo hadn't worked on anything except my lungs and that several tumors had actually gotten bigger. So you can see why I'm facing the prospect of news from last Friday's scans with dread and anxiety, despite there being some early indications that I can feel more optimistic about this treatment. On a very real, very visceral level those signs don't matter at all. No matter how well I feel or how well I seem to be doing all these scans have ever showed is that I'm still getting worse. Or as I might say, if I weren't so inclined to avoid upsetting the rest of you, that I'm still dying (slowly, but faster than most of you and far faster than any of us would like).

I've written before about how incredibly impressed I am with the science of the study I'm on now and I have far more reason for thinking I might get some good news out of it than from the default chemotherapy option. But the cold indifference of x-rays and the people who read them stands in such stunning contrast to the incredible amount of emotion associated with the process that I cannot help but expect its cruelty. And honestly no offense to radiologists--I even have friends who are radiologists!--who see thousands of these images and who must write dispassionately because it is their job. I get it. But it's tough to read as a patient, to see yourself anatomized and quantified, like a patient etherised upon a table.

If you want to know what one of these reports looks like--what I'm facing getting tomorrow (or today, August 20th) here are mine from back in June. (Keep in mind that this one even has a piece of good news in which is that two of the lung tumors are gone and the others got smaller.)

So when I say that I'm nervous about tomorrow you can imagine why. In the morning, as usual, I'll drive myself to Philadelphia to meet my doctors. Inevitably, 95 will have construction or an accident and it will take 90 minutes each way, a total of 3 hours alone in the car with my thoughts and either the anxiety and fear caused but NOT knowing or the potentially worse anxiety caused by knowing. It's times like these that I hate being single, being an only child, living alone. So often it's just this dynamic duo of me and my anxiety...and my goodness do I get sick of us!

Now, yes, I have wonderful friends and family who would fly out here in a heartbeat if I asked. But part of trying to maintain "a normal life"; to live as myself even while living with this disease, is to do things as I normally do them. And for the past couple years that as meant living singly, independently, and perhaps a little too entrenched in that fact. My parents can tell you that from the earliest age I wanted to do things myself and would tell them emphatically (a nice word for it) to leave me alone and let me do it. (They did. They do.)

I'm not so different as an adult. I didn't want anyone to think, as a child, that I couldn't do things for myself and some core part of me has never gotten past that. But what I understand now that I didn't then is that just because you can do something doesn't mean you have to. (I do have friends here who have gone with me to appointments in the past but I have now developed a silly conviction that they have done enough and should not be bothered further.) Still, it's hard to put this into practice and ask for things. 

What's more, it can be hard to know what to ask for. Or, even if I know that, say, it would be fantastic to have someone else drive at least one way to or from Philly sometime, it can be too hard to ask for it because it seems like too big a favor. Because accompanying the childhood conviction that I can do it myself is a longstanding fear of being too much. Many women struggle with this, I know, and I won't say too much about it now. But I will say that it pairs either very badly (or very well, depending on your perspective) with the drive to look capable and reliable, to seem in control no matter what the situation. Even if the situation is literally threatening my life. I can do it myself. But should I?

It's much easier to accept an offer than it is to ask for something, not least because it relieves the burden of emotional labor involved in figuring out what to ask and in overcoming any hangups about asking for it. If you're in a position to offer something--to me or to someone else going through something rough, whether it's illness or grief or something else entirely--consider doing it. We've all looked at a menu enough times to know that sometimes you don't even know what to order until a friend suggests it. Look at the menu for someone you care about and offer them something. (But also be ok if they turn it down because it just doesn't appeal...we've all had that menu experience too.) 

I suppose I've wandered off track (and maybe now feel a little hungry) but I wanted to remind myself that you're out there and to try to share just a little of the mental state that I exist in most days now with you. Thanks for coming on this ride with me. I'll share whatever news I have as soon as I'm able. 

Love,
Rebecca