Researching and applying to clinical trials is a full-time job with no benefits, terrible hours, and lousy pay. The working conditions are truly appalling, and my boss (me) is totally unreasonable, always pushing and driving me, no matter how tired I get. But since I am also the HR department and the union rep, I don’t really have anyone to complain to. On the upside, the dress code is great (hey, I wore that yesterday!) and the workspace is really comfy (my bed! my kitchen counter!) Plus, this could turn out to be fulfilling work. We might end up saving lives over here – not a thing writers typically get to do in the course of their careers.
But I’m new on the job and the learning curve remains steep. Some of the lessons I’m learning are painful: many trials listed as “open” turn out to be closed; and in spite of the fact that patients don’t pay for the trial drugs themselves, the cost of clinical trial participation in the States is staggering (I can’t even be evaluated for trial placement for less than a few thousand dollars U.S.) It’s hard work, but at least I’m extremely well motivated.
So what does a typical day on the job look like?
I wake up, get my daughter and husband out of the house, and immediately begin working on finding clinical trials. First I try to find out if the trials we’ve identified are open – this was recently made easier by a lovely friend-of-a-friend who coached me on decoding clinical trials and gave me a central hotline* for the pharma company testing TDM1. (When I tried calling from Canada they asked that I contact the company’s Canadian headquarters as the service was designed for U.S. residents only, so now I just get my dad to call them from California to see if a particular trial is still open. He tells them his daughter lives in “the North East.”) This has saved me days of work.
If a clinical trial is still open, I contact them and try to find out if they have any places left, how long the waiting list is, when they’ll be accepting new candidates, what the application protocol is, etc. etc. I have usually had at best a piece of toast and maybe some fruit at this point and I tend to become aware of my hunger and the fact that it is past noon, simultaneously. Or, I get tired and go back to sleep for an hour or two. My boss permits this as experience has taught her she’ll lose her best worker for the whole day to a migraine if she doesn’t let her eat and sleep a bit.
After my break, I switch my focus back to Toronto, calling my oncologist’s office to follow-up on her progress getting me approved for a non-standard treatment involving standard therapies (don’t ask.) I’ll forward her any application instructions from U.S. cancer centres, and lately I’ve also been chasing an appointment with the symptom management people. They are actually called the Outpatient Palliative Care people but I don’t want to say that because everyone knows that Palliative Care means taking care of the dying and that’s the kind of thing that makes me plug my ears, close my eyes, and say “Lalalala” really loudly until it goes away.
What I really want to do at this point of the day is to eat fresh baked bread with lots of butter and take a hot bath. Instead, I try to follow leads on the most recent trials that Willow dug up for me, trying to track down new central information numbers for them since they are different pharmaceutical companies to the TDM1 trials. I investigate the possibility of getting access to a closed TDM1 trial (not likely) or access to drugs that are approved but not available in combination as standard therapies (unorthodox, frowned-upon, and tied-up in bureaucratic red tape.) Finally, if there’s any time left in my day I try to research complementary medicines, supplements, therapies, and nutrition – but this kind of research ends up taking a backseat to the all-consuming pursuit of clinical trials. As does remembering to eat well and take my supplements.
(I am almost 100% sure that somewhere in those last few paragraphs I lost you by using language that sounded like this: sdjfhkkksidfuhserioufjghi. This is a hazard of my new line of work – you learn that becoming fluent in Cancer Speak is essential to survival, but actually speaking it has the unfortunate side effect of making everyone around you go all glazed and fuzzy.)
Anyway, this is my day, day after day. Onward I trudge. Some amazing people have come trudging along with me. There are people who have helped me understand the clinical trial system, people who’ve helped me figure out which drugs or treatments are the best options for me, people who have investigated special access or other programs, and people who have helped me find new trials.
And then there are lots and lots of people who have made me food, made suggestions, made me laugh, made my life easier, encouraged me, advocated for me, kvetched and commiserated with me, and helped me get back on my feet to try another day.
I have all this support – perhaps far more support than someone who wasn’t publicly blogging about her situation would have. And I have an outrageously supportive immediate circle of family and friends – they want to help, research, make phone calls, and go web-spelunking… They want to and they do.
And yet I still don’t have a trial.
What I do have is trouble breathing after climbing the stairs, lumps that are growing, coughing fits that leave me gagging and shaking, headaches and weird migraine auras and cough fractures and low grade fever and a really pathetically limited amount of energy. In other words, no time to lose.
I also have a dashing husband with whom I am ridiculously in love, an amazingly beautiful little girl, a family that makes me feel like I was born blessed, and friendships that make me feel like I grew up lucky. In short, a life worth fighting and fighting and fighting for, even if the fight takes the rather humdrum form of hours on the internet and papers strewn all over the bed.
I haven’t worked like this since my dotcom days, and we all know how that era ended. I may not like this job, but since I’m not quitting and it’s unlikely that I’ll fire me, I may as well get on with it. But I’m definitely going to speak to management about getting an espresso machine in here. And maybe a foosball table.
*Genentech trial information 6am-3pm (888) 662-6728