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