Feathers and Capes

Several weeks ago I met a woman named Janet, a friend of a friend who, like me, is a young mother with metastatic breast cancer. There are about a million other things that would likely have led us to friendship anyway, but unwanted intimate knowlege of the particular agonies, fears and triumphs of life with metastatic breast cancer is a pretty powerful common ground to share. 

Janet has been at this cancer thing for a few years longer than I have, and she really knows her way around.  I thought I was informed and self-advocating?  Next to Janet I look like a bit of a slacker. But the great thing is she’s a natural mentor, with an indomitable nurturing streak and a determination to empower other people.  She simply can’t stand the idea of cancer bullying anyone, and she does what she can to stop it from happening.

To me it seemed as though she appeared right out of the clear blue sky just when I most needed her, and so I started calling her my guardian angel.  It’s true: I write “Flap Flap” in the subject line of my e-mails to her, and I swear when she sits down at my kitchen counter for a chat I sometimes see tiny downy feathers floating through the beams of sunlight in my kitchen.  Probably not auras.

Anyway, back before we went to Detroit, Janet was at my side making sure I knew that there were lots of ways for me to keep actively fighting this cancer, even if I wasn’t yet enlisted in a clinical trial.  At a time when I felt abandoned by the hospital and health system, Janet offered practical, tangible things I could do, people I could contact, steps I could take so that I wouldn’t feel helpless; like a sitting duck in cancer’s crosshairs.

And one of the greatest gifts Janet gave me was to introduce me to Constantine.  He’s been one of Janet’s secret weapons in her own uphill journey with this beast, and if she’s a guardian angel, he’s a superhero.  She found him on the peer-to-peer cancer support site No Surrender where (under the web name “Edge”) he acts as resident medical researcher.   What that means is that Constantine responds to cancer patients’ questions about treatment options and myriad other confusing matters with clear summaries of relevant cancer research compiled from innumerable credible sources around the globe.  Constantine himself is not actually producing the research in question – which means he remains an impartial and unbiased third-party.  What he does is gather, evaluate and present findings to people who would otherwise be unable to find and make sense of the facts they need to make informed choices about their survival.  And Constantine does all this for free. 

So, while I haven’t actually seen the cape, I think it’s fair to say that there’s some pretty superhuman generosity of spirit at work here.  The sheer volume of information that he compiles is in itself overwhelming to contemplate, but that he then examines case-by-case requests for specific information is giving to a degree I can barely fathom.  And not just because I suck at research and statistics and would rather have my toenails pulled out than have to do it myself. Anyway, I’m deeply grateful to Constantine for his continued guidance, and always to Janet for taking me under her gigantic wings.

I’m telling you, angels and superheroes… they walk among us.

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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

Breastcancertrials.org

My dad found this clinical trials website for me when my doctor and I talked about looking at clinical trials that might have long application processes (the idea being that I don’t want to get caught with a treatment that isn’t working and face a long wait time for a clinical trial.)  Our deal is that I will look up any trials that I might be interested in and my oncologist will vet them to see if they are appropriate for me, and help me with applications as needed.  Shortlisting trials for my specific disease is made easy by the website which has you fill out a comprehensive medical history first, and then filters the posible clinical trials you might be eligible for accordingly. Thirty-eight came up on my list — everything from trials for new drugs and targeted therapies to stem cell transplants to power-of-prayer studies — and there is an e-mail notification option to alert you to any new studies that come up.  

Of course, the hope is that my current treatment will work for me & I won’t be needing these trials, but I’ve been treatment-hopping for a while now and am beginning to see the wisdom in adopting the Boy Scouts’ credo.

While this site lists U.S. clinical trials only, it does have a link to other non-U.S. sites. I found it very user-friendly and thorough. Check it out or pass it on… www.breastcancertrials.org

Apoptosis

My curiosity about HDAC inhibitors (the class of drug to which Panobinostat belongs) has overtaken my better judgment.  Meaning I went a-Googling, even though I knew beforehand that any explanations I found would be in science-speak and therefore way over my decidedly unscientific head.  However, I did find the following almost plain-language description, featuring actual adjectives:

 

“Histone deacetylase (HDAC) inhibitors are emerging as an exciting new class of potential anticancer agents for the treatment of solid and hematological malignancies. In recent years, an increasing number of structurally diverse HDAC inhibitors have been identified that inhibit proliferation and induce differentiation and/or apoptosis of tumor cells in culture and in animal models.”

 

Never mind the wishy-washy “potential anti-cancer agents” or the “in culture and in animal models” qualifier. HDAC inhibitors are cancer agents, alright.  And they mean business.  As my extremely scientific cousin Donald wrote me, “Basically I’m glad I’m not a tumour cell on the receiving end of it since the stuff will kick their tiny butts in several different and lethal ways!”

 

And if that’s not encouraging enough, may I direct your attention to the word “apoptosis.”  It is my new favourite word.  Apparently, in addition to being strangely enjoyable to say, it actually means “cellular suicide” also known as “programmed cell death.”

 

Awfully sinister isn’t it?  I picture the cancer cells drinking up Panobinostat like so much poisoned kool-aid, and my little heart gleefully cries, “Apoptosize yourselves, evil tumour cells! Die, die, die!”

 

What’s not to love?