How to bear the unbearable? Quarantine week 9, chemo week 15, cancer week 67

I was hoping to write a longer, more thoughtful post about how heroism is boring, day to day, and how ill prepared we are for what it looks and feels like. And hopefully I will! But since I know that it's been a while since I've posted about how things are going, I thought I'd at least catch up those of you who don't follow me on Twitter.

The format makes it easier for me to write briefer updates there, but tonight I wrote more than Twitter usually likes to see about how I feel about my next chemo visit tomorrow (May 15th), which is my sixth on this (3rd) treatment course and the last before I get another set of scans. It's also the 3rd since quarantine began (I snuck one in on March 12th when I was still allowed a companion for the trip instead of chauffeurs). Here's my Twitter thread about it:

"I have chemo again tomorrow bc even though time is a construct I still have to go every 3 weeks. My emotions are all over the place. Most simply, I am tired & don’t want to go through this again. However, it’s some  of my only human contact so I’m also oddly excited.

I don’t mean physical contact (which is minimal & as distant as possible) but sharing space w/another person in silent company. It’s an exceptional circumstance so friends will drive me or sit on my (9 ft) sofa. I want to weep with relief about it, but also I’m angry. (2/)  

Why am I angry? Well, first we all are. This situation is outrageous, unbearable, & yet we must bear it. Second, I live with & suffer from cancer all the time not just every 3 weeks. I’m wracked with guilt & sadness about how much I need my people around me yet cannot ask. 3/)

I want them to make exceptions for me more than once or twice every 3 weeks. I don’t want to ask, though, bc many of them feel stressed by compromising even this much. They cry when they tell me they wish they could be here or, if they are, that wish they could hug me. (4/) 

I have to talk my parents (80 & 76 w/an underlying condition) out of traveling to be with me & suspect & worry they will do it anyway. Of the 504 hours in 3 weeks I spend conservatively 480 alone (& I’m awake for probably 350 of them). It’s unsustainable, unbearable. (5/) 

This is what I’m doing to help stop the spread. Living by myself w/stage 4 cancer, working FT, spending 160 hrs a week alone, excited for chemo so I won’t be. I’m angry that more is not offered me. But I’m furious that others don’t have more perspective on their own suffering.6/) 

I have been doing this for 9 weeks. 9 weeks is more time in my lifespan than it is for most of yours. Do not take away another 3 months, 6 months, a year or two from me. I do not have that much spare time. I know it is unbearable, but please bear it a bit longer. (7/) 

But also: if you do see me (or anyone) walking with a friend or sitting together in the sun, do not assume we are being irresponsible because we are young or because one of us has purple hair. You have no idea what people are bearing in private. Be cautious, but be kind. (fin)"

These past few weeks have felt strained for me too. Mostly I've been doing what everyone has been doing and just trying to get by, enjoying the sunshine when we have it (although it's been spitefully cold and rainy for spring), reading and watching TV, throwing myself into work (especially if it benefits other people), and burning myself out on video calls seeking connection.

When I'm at my least generous, I resent other people (including those I know and love) for only having to endure quarantine itself, or for getting to endure it with someone who loves them and whom they love. I resent the idea of the nuclear family that sanctions a group of 4 seeing one another in one instance, but which makes my friends (living in 1s and 2s and also isolating) feel that they cannot see me. I resent the idea of couplehood that makes me feel that what I'm enduring is somehow a just punishment for my singledom (already viewed as a defect). I feel these resentments, but then I remember to be kind, which is the braver and better thing.

But it cannot be denied that going through this with cancer, as I do every moment of every day not just when I have chemo, is worse than doing it without cancer. If I am quiet on here, or bad replying to texts, or not able to do another Zoom call, it may be because the situation is quite literally exhausting me. It is taking me longer to bounce back from chemo sessions than it used to (now a full week) and I am not able to tell whether that is because of the cumulative effects of the chemo drug (which I was warned about) or because of the psychological drag of the quarantine. I also now find that I can't even really talk on the phone after chemo--that my energy levels are so depleted that only the comfort of having another person around physically works for those worst couple days. It's hard to have the capabilities of your body cut you off from what might be psychologically nourishing.

Thank you, though, for all the good wishes and messages you send from afar (which, now, is nearly anywhere). They absolutely make a difference, as I check my phone repeatedly and incessantly to make sure that, really, I'm not as alone as I may feel. I hope that you are doing as well as you can be doing too, and that you are finding comforts where you can.

Love,

Rebecca

How to Endure: Cancer in the Time of Pandemic

Hi all,

Welcome to a very special birthday post from me in which I mostly think about what it's like to have cancer in the time of a global pandemic. As a way of topping my last year's celebration--where I was just about to start chemo--this year the world is sheltering in place under quarantine orders as an unprecedented public health disaster unfolds around us. (Sorry if my predeliction for dramatic narratives is in any way responsible for this fact...)

I've been trying to work up the energy to post and let you know that I'm doing ok in this time of a global emergency...as ok as anyone I guess. I should say right off the bat that I am not, right now, immunocompromised, although I am at risk for it. We can all hope my system keeps bouncing back as it has done to keep me out of the most vulnerable group. (I do also have lung tumors, so a respiratory infection would automatically come with complications.)

Mostly, I spent a lot of the past two weeks wondering not if but how the pandemic was likely to affect my cancer treatment and I finally have enough information to confirm that, as of now, I'm still able to stay on the study and get chemo as planned this coming Thursday (April 2nd). I had been scheduled to get CT scans on Tuesday, March 31st to assess whether the treatment I started at the end of January has worked well enough for me to continue on the clinical trial. Although I get so many that it has perhaps come to seem routine, "scanxiety" is a very real phenomenon because these are how you learn whether things are going well (or well enough) or whether the disease has "progressed" and you have to regroup and try again with a new treatment plan. It had been since October that I had had a positive scan, with November showing a halting of improvement and December and January documenting the reversal of recovery. So obviously I was anxious and wanted them as soon as possible.

Hearing reports of "non-essential" treatments being canceled, my Penn oncologist and I decided to try to move my scans up. After many phone calls and the efforts and good will of a number of doctors and hospital staff I was able to get them on the 23rd in Princeton (avoiding both the drive into Philly and the potential for exposure there). I'm glad we did because I learned yesterday that the treatment has been working fine; not great, but well enough that a) some tumors got somewhat smaller, b) no tumors got bigger, and c) no new metastatic sites were observed. Clinically, that's ruled as "stable disease" b/c in order for it to be a "partial response" you have to have your cancer go down by at least 30%. But reversing the trend of growth is still a win, and perhaps more time will see more results. And crucially, I do not have to investigate a new treatment option or try to change in the midst of what is soon to be the crest of the pandemic wave of cases. It's only relatively lucky, but I will take it!

I have also seen reports in the cancer community about people having their chemo canceled as non-essential, which was shocking to me. I wrote last year about feeling like cancer should always be a "red ball" case that gets rocketed up the chain for testing, insurance approval, etc. and being shocked that it just wasn't. I understand that in some cases where a cancer patient is immunosuppressed, even attending a treatment at a hospital may pose greater risk than delaying it because the risk of infection is such a threat. But that is an extraordinary statement to make, amidst a daily barrage of extraordinary statements. Not all the stories were that clear-cut, though, so I was glad to hear from my doctor that as a stage 4 patient my scheduled treatments will not be bumped. I cannot have any visitors (and it's a pretty rough thing to do alone), but I can and will get through this. We all will. Because we all have in us more than we know.

***

Shortly after my beloved grandma died (suddenly, from complications during surgery) my dad told me that one of the last things she said to him was that she would be ok because, "I'm a warrior." And she was. From a tiny place in the woods of east Texas, as a teenager she ran her family's store during the Great Depression and cared for a mess of brothers. When my daddy was eight years old, she and my grandfather picked up and moved away from a community where they knew everyone and had for generations to Dallas--an unfamiliar big city--because his younger brother had been born deaf and they wanted to send him to a special school. She founded and ran her own school, an income she supplemented with other jobs while my granddaddy was away walking pipeline for an oil company.

When I knew her, late in her life, she had lost her sight but continued devouring books on tape and listening to the clues on "Jeopardy!". I was the first and only grandbaby and I was adored (not to say spoiled). The only times she actually saw me, before she was blind, I was just a few months old, chewing clean laundry in the basket in which someone had deposited me. As I grew up, she would feel my face, my hair, my ever-increasing height (and joke each time that "I'm going to have to saw your legs off!"). She would listen to my voice on Sunday phone calls; do crossword puzzles with me, as I read clues while lounging on her velour sofa; offer a "piece of Hershey" or a stick of spearmint gum from the same blue tin on the table in which she kept her cigarettes.

She could still piece quilts by feel, even though she couldn't see the fabric, and advised me on the 1ft patchwork square I made for my doll's bed. She was weakened, exhausted, blind, and often in pain (which she tactfully never mentioned with me around). Except when she changed to a polyester pantsuit for visiting the doctor, she wore carpet slippers and housedress with a pack of Marlboros in the pocket that she lit from a gas burner, leaning on her walker by an ancient stove. No one knew quite how old she was when she died--our best guess is eighty-three--because she was also the kind of Southern lady who told no one her real age. She was a warrior in that, despite all that had happened in her life and all that was happening to her body, she kept on going. She endured.

When I search for inspiration to continue with treatments that make me feel worse than the disease, to fight so hard to save a body that's betraying me, to stay in an increasingly terrifying world that's betraying all of us, I think of her last words. I'm a warrior. I will endure.

Believe it or not, you are also and you will too. In our struggles to continue with our lives in the face of monumental uncertainty and paralyzing anxiety, our greatest achievement is to keep on going. We fight (each of us different things) so that we may endure. It is not pleasant. It will reduce you to tears. You will exhaust all your emotional resources. But you will triumph. I have been fighting, existing in crisis mode, for 14 months and that is how I know that you can do it. You must grieve (and allow yourself time for it) for what you have lost, including a sense of safety or normalcy. But as you press on, you will find that inner strength or resiliency. I'm sorry that this is being demanded of you. It is not fair. But that will not change it. You may grieve, cry, fight, and struggle but, ultimately, you will accept that your way forward, your treatment, is to endure.

I've reflected a lot on social media about how living with stage 4 cancer accidentally prepared me for the experience of the pandemic. I wrote a coda to an essay that will be published--likely this May--about the "Body as Data." Since the coda itself will probably change by then, the situating evolving as rapidly as it is, I thought I would share it here. Thank you for being with me and providing that community that has been the saving grace of treatment.

Love,
Rebecca

***

As of writing this essay, it’s been 14 months since my diagnosis. I have tried three different treatments, two of which were clinical trials, one of which I am still enrolled in. It is approaching my thirty-sixth birthday [it's actually today - March 29th] and everyone is sheltering in place because of the coronavirus. I have lived more than a year now tolerating the same kind of existential uncertainty and fear of an alien invader in the body that the world as a whole is now experiencing. I have played my own doctor, watching my body for signs that a treatment is working, or that it is not, in much the same way. I have tried to anticipate what will happen if I become immunocompromised (as I currently am not, but am at risk for) and given up many of the pleasures that made my life better before (traveling, going out with friends) in the name of my health. I have offered my body up as data to research scientists with the goal of furthering not just my own treatment but the survival prospects of future patients.

I did not know that throughout this year I was in training for a time when we would all of necessity be regarded as bodies with the potential to produce valuable data about the spread and effects of COVID-19. We are starved for numbers, for data on infections and recoveries and for statistical models that may relieve us of the uncertainty we feel about the future. I cannot provide that. But I can tell you to be cautious readers of data and statistics that speak with any pretense to authority right now, even though I crave them too. 

Cancer is invisible and so are viruses. This particular virus can inhabit the body but produce no symptom and live for days on surfaces. It may be in us. It may be in those we love. We are in the middle of the data. We are the data.

Susan Sontag wrote in Illness as Metaphor that “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place” (3). A pandemic transcends borders but does not do away with the kingdom of the sick. As someone already resident, I can say to you: welcome. The hardest thing about being here is the grief for what we have lost, including a sense of normalcy. The best thing, though, is what we may find: community in a time of crisis.

Lost Weekends: Chemo Progress Report

Hi friends,

I'm writing you from my sofa, where I spend an increasing amount of time (much to the delight of the cat), at the end of my second post-chemo weekend. My last update was a month ago, right after I had done the considerable work of enrolling in the clinical trial at Penn that looks at treatment with chemotherapy and the immunological agent atezolizumab vs. just chemotherapy. My first session was on January 30th and I had a bit of good luck (for a change) and was randomized to the arm of the trial that got both the chemotherapy agent and the immunological agent, rather than the control group! (That's why I look improbably happy about my IV infusion in the attached photo.)

So far, the side effects are pretty tolerable. They don't really show up until days 2 or 3 which, since I go on Thursdays, pretty much means a Lost Weekend to symptoms. There's nausea, but I'm able to manage it with medication, and then there's very intense fatigue. I said to a friend at the outset of this trial that I consider myself a connoisseur of fatigue, having suffered chronic fatigue for years that was bad enough for them to do a bone marrow biopsy to verify that I didn't have cancer. (That's how I know I didn't have it in 2016.) This particular strain of fatigue is both familiar, in that the physical effects are undeniable and demand immediate rest, and unfamiliar because I get foggy-headed in a way I didn't before. Some folks refer to memory and concentration problems they encounter as "chemo brain," but I think this is less intense, more like being sleep deprived or a little sick. Honestly, the whole package is like having a bad flu. It lasts about 5 days and the symptoms are pretty similar. So, not great. But also not the worst.

On this study, I go to Penn for treatment every 3 weeks. It takes all day, in part because when you get treated with a drug that's in trials they have to release it from the "experimental pharmacy," a process that can take multiple hours (as it did last Thursday). I'm really glad I only have to go every 3 weeks (plus visits for scans) and not every week, as I was doing before, both because it gives me the opportunity to recover from the side effects and have a bit more of a normal time in between visits.

Also, they are a huge pain. 

I know that may seem obvious, since chemo is clearly a terrible way to spend a day. But the truth is that it's actually less bad than the exhausting apparatus surrounding the visit. I tend, as usual, to minimize the more distressing aspects, both to myself and others, because it's just what needs to be done and, in a situation as colossally unfair as this one, the inconvenience or annoyance of actually going to the hospital pales in comparison. But, if you're curious, here's what it's like.

A day going to chemo for me starts pretty early since Philadelphia is about 45 miles away from Princeton (basically the same distance as New York but it somehow feels longer) and since I-95 is always terrible. Driving can take anywhere from an hour and ten minutes (without any traffic) to 2+ hours (if there's an accident). So if I'm supposed to check in at 8:30am I have to leave the house ideally by 6:30--which I NEVER manage to do because I have a lifelong hatred of mornings--but definitely before 7:00. This means getting up around 5:30 or 5:45. Again, I know people get up this early all the time, but if you know me you know that I am basically incapable of falling asleep before 1am (unless I'm very sick).

So I set out on this early venture, but not alone. I have an intrepid and sleepy friend with me to drive, both because I'm not allowed to drive myself home and because parking at the hospital is such a nightmare that often I have to hop out at a corner or intersection to make my appointment time. I did, however, learn that you get completely free parking if you get chemo! (This isn't true for other kinds of appointments.) My intrepid friend will meet up with me again in the cancer center and, usually, work remotely throughout the day while we sit in a series of chairs and check in with a series of doctors. I'm really grateful for this company because something that no one tells you about cancer is how incredibly boring it is a lot of the time.

The first medical thing that happens is that the nurses at the "infusion center" (which always sounds more pleasant than it actually is, as though it should come with scented oils) access the port through which they draw blood (usually about 10 tubes of it) and through which I'll receive chemo later. After they collect blood samples, I head to the waiting room for my oncologist, who I have to check in with before I can receive treatment. We have to wait for my blood tests to come back to prove that my body is functioning well enough for me to poison it. That sounds kind of backwards, but basically I have to have baseline body functions that are good enough for me to withstand chemo. (Oh, at some point they also do my vitals--height, weight, blood pressure, heart rate, oxygen saturation--which they'll collect again several times.) I also consult with my oncologist and the study coordinator about any side effects or questions and have a physical exam of the palpable tumors.

Next, assuming my numbers look good, I can check in for chemo. Penn has private rooms, which is different from the infusion center in Princeton. Some of them have lovely views of the city and some are windowless prison cells. I've had one of each. It's just luck of the draw. But I can certainly confirm that having natural light makes a big difference. By this time I've been at the hospital for 2-3 hours. The next phase is the most frustrating, which is waiting for the experimental pharmacy to release the immunological agent, which I have to receive first. The first time it took about 90 minutes, the second almost 3 hours. Once they get that, they can finally start the infusions. I get the immunological agent, followed by pre-meds for chemo (a long-acting anti-nausea drug, a short-acting one, many others to make the process less awful by controlling my reaction), followed by chemo itself. Together, all the infusions take about 3 hours.

My total time at the hospital is something between 6 and 7 hours. The driving, total, is about 3 hours. So, all in all, it's a 9-10 hour day. I often manage to use this as a time to enjoy the company of the friend who goes with me, since how often do you get to spend that much concerted time together? Often one or both of us is working, though increasingly I get spacey enough that I prefer to read, listen to a podcast, or just nap. Once I get home, I usually nap and, hopefully, see another friend who brings by dinner. These little acts of company make the biggest difference to me. I feel somewhat bad, since my exhaustion means I'm not often up for long visits, but just having another person around is tremendously reassuring. Dropping by, or being there while I nap or read, does a lot to break me out of the isolation that I can feel by being trapped so much in the physical symptoms of my treatment experience.

Illness is very isolating and makes you very vulnerable. No one else can endure the treatment for you and, in a way, the pain and discomfort is fundamentally incommunicable. Yet the emotional experience doesn't have to be similarly incommunicable and company (or well wishes) is a major antidote to that risk. So, as I wrap up this post-chemo weekend, I'd like to say thanks for reading and sharing it with me. 

Love,
Rebecca

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