Full-time Job

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

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11 Comments

Filed under Living with Breast Cancer

11 responses to “Full-time Job

  1. Lucy K.

    Leanne, thank you for providing the visuals of you hard at work, and confirmation of the comforts you find in your family, friends, and helpful acquaintances, but most importantly, I love reading of your spunk and determination. You are pulling more out of yourself than many of us could ever accomplish. I wish you many things, including success in finding a trial, many happy moments in every day, and more peaceful, healing nights. Sleep tight, my dear.
    Lucy K.

  2. diane

    Oh Leanne! You are amazing!

  3. Andrew Giles

    Very well written L. 😉

    I know this sound odd, but is there anything Chatelaine can do? You’d think a media entity of that size could turn this into a larger story and effect your ability to get into a trial? If anyone from Chatelaine is reading this —chop chop. (Please). 😉

  4. gwen

    I don’t know where you find the strength, Leanne, to run your personal, one-woman research company at such a difficult time! I understand WHY you do it. I just don’t know how you manage, even with the help of family and friends.
    It seems that you and the other cancer patients across the country who find themselves in similar situations are forced into doing the same thing, each re-inventing the wheel in the hopes that it will get his/her own wagon rolling towards a suitable clinical trial. Why is there no national/international clearing house for the relevant information? Those people who have not responded to standard treatments have no time or energy to form such an organization. But that is what is needed, seemingly. What a worthwhile project it would be for those of us who are well and healthy! But where to start?

  5. lisa

    I was going to ask the same question as Gwen… Are there other women and men out there going through the exact same thing that you are Leanne? Seems like a lot of expended energy re-inventing the wheel each time. I hope with this being on such an open forum that more people will get on board and perhaps a database/organization can be formed from this. ASAP.

  6. michelle yee

    You’re amazing Leanne.

    I know you’ve got an army of volunteers, but I’m gonna throw my hat into the ring anyway.

    If there’s anything I can do, I’ll do.

  7. diane

    Leanne, I’m home and hooked up to the laptop. Send anything my way: research, phone calls, etc., that you think I can help with. The number of a favourite Italian restaurant that delivers. Or doesn’t. I could pick it up.
    Love Diane

  8. Chatelaine.com

    Hi Andrew,
    In the May issue of Chatelaine (which will be out next week) we will be featuring a breast cancer package with editorial and information. Plus, the woman on our cover is wearing the FTBC t-shirt. Leanne shares her experience in this issue. We will hopefully garner some media attention with the May issue and continue to post messages on fb and twitter.
    Chatelaine.com

  9. leanne coppen

    LADIES & GENTLEMAN: you are right, this issue does need to be addressed, and resolved, on a national level. There needs to be some kind of universally accessible support service for people with cancer for whom standard treatments are not working, that would provide research and guidance for clinical trials in Canada and the U.S. Ideally there would be financial assistance or compassionate care programs to dovetail with the research and identification of suitable clinical trials. Unfortunately, those of us who have the misfortune of being most informed on the subject are also very, very ill and don’t have the luxury of doing anything but fighting for our lives.

    CHATELAINE — It’s very good that the May issue highlights breast cancer, an important issue for women (and men) of all ages and demographics. I think Andrew was asking more specifically about doing a story on this subject; the gap in our health care system for people with advanced, unresponsive cancer who require experimental drugs available only in clinical trials. I think people across the country would be shocked to learn that our hospitals are not equipped to support someone in this situation, and that people are left to find their own treatment options. I don’t think the timing of such a story would affect MY ability to get into a trial in any way — but I know I’m not the only person in Canada facing this incredible lapse in the system. It’s not just an oversight, it really is a matter of life and death.

    l.

  10. Jen

    I feel glazed and fuzzy or dazed and confused most days
    anyway…would, however love to offer any help you could
    use from within the US! Whitey has my info you think I can be
    of use!
    Jen

  11. Andrew Giles

    Thank you Chatelaine, I sincerely appreciate it. Much thanks.

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