Just before the weekend I heard from Dr. Detroit and according to her, there has been a delay in my starting treatment with the Karmanos Centre clinical trial because “we are still waiting for the Canadian government to approve your treatment here.”
Um, yeah… Approval from the Canadian government…for my treatment in the U.S. …Pardon me?
First of all, that’s just what you need when you’re desperately awaiting life-saving treatment: a gargantuan bureaucratic behemoth squatting in your path and waylaying the approval process. Second, what in the holy bejeesus could the Canadian government be approving, since we are paying for every penny of my treatment ourselves? And which branch of the government? And at which level – Provincial? Federal?
I shared the e-mail with my family and we did a lot of looking at each other and blinking in utter confusion at the total absurdity of the Canadian government’s involvement. As far as I’m concerned my government lost its say in my treatment right around the time I was told that they couldn’t do anything more for me and I had better look into clinical trials for experimental treatment options. Which of course I did. And now they’re holding me up?
We’re all totally stymied, and I vow to get to the bottom of this Big Brother-esque mystery just as soon as I can devote some energy to it. At the moment however, my focus has to be on regaining my strength and appetite after a weekend of adjusting to the new painkillahs.
Actually, the main reason I’m not banging down doors for answers (other than having no idea upon which doors to bang) is that I don’t have to; Dr. Detroit went on to say that as an alternative to the delay they are opening a compassionate use trial for me that is monotherapy (which is how the drug will be FDA approved in the U.S.) She says they anticipate it opening up in a few weeks.
Okay so how’s that for a doctor? Something gets in her way – something like, oh I don’t know… a government – and she just goes around it to come up with another solution to get me the treatment I need in a timely manner! And not just the treatment I need, but the dose at which it will be approved when it goes to market. In other words, the dose that worked for people in clinical trials! She’s like the superhero of oncologists – she should be wearing a cape, not a lab coat.
We can’t celebrate yet — I still need to hear that they have been successful in opening the monotherapy compassionate trial, and of course that my government hasn’t stopped up the process any further. And until then, I need to do my part and stay in good enough health to make it to the new start date in a few weeks. I think I can do this. I have to.
Hold on Detroit, I’m coming!
We love Detroit!
Well, maybe not the urban wasteland / don’t-take-a-wrong-turn-sucka city proper – but we definitely love the gleaming, amazing Karmanos Cancer Center, stuck incongruously in the heart of it. And we especially love the brilliant clinical trial leader there, who shall hereafter be referred to as Dr. Detroit.
Dr. Detroit is world-renowned for her work in testing new cancer drugs. She’s been at Karmanos for 21 years and in that time has brought so many important anti-cancer drugs to market that she’s become a bit of a cancer legend. In person, she’s a thorough, straight-talking, personable, smart, get-it-done whirlwind of a woman – but what we liked best is that she seems completely unafraid to give us hope. Specifically, hope that this drug will work for me. Hope that I might live. She did it in part by saying that for HER2+ cancer, TDM1 is the best drug she has ever worked with.
This is the first time we can remember sitting in the presence of an oncologist who will use a word stronger than “interesting” to describe a trial drug and its potential benefit. And frankly, I really would like a drug to do more than “interest” me, especially if we are going to have to travel several hundred miles every week and raise several tens of thousands of dollars to get it.
Anyway, there we were, listening to Dr. Detroit and feeling the unfamiliar buoyancy of hope for the first time in forever. Amazingly, I was also feeling more energetic than I had in weeks, which was unexpected, especially after the long drive Wednesday (we’ll be taking the train next time.) In fact I’d been totally exhausted when we checked into our room on the hospital campus the evening before, and had a low fever as I got into a hot bath while my husband went out to forage for food. (Let’s just note here that driving around downtown Detroit after dark with Ontario plates and no idea where he’s going is not what I would describe as typical of his intelligence and good judgment, but he did make it back in one piece.) By the time he came back, I was feeling better, sitting up reading in bed, and he remarked that I had colour in my cheeks again and wasn’t coughing continuously. “I don’t want to jinx anything,” he said, “But do you think the chemo could already be working?”
In the morning, I was even better. Neither of us could believe that I was able to walk across the hospital grounds to the clinic, and then sit, eat, talk, and just generally function at an almost normal level. It was a surprise to both of us; hard to believe I was the same woman who, four days earlier, couldn’t get out of bed to get a glass of water. Mind you, four weeks earlier I could go for long walks and chase pigeons through the park with my kid… Anyway, we were just happy that I didn’t seem quite so ready for the Final Curtain anymore.
So when Dr. Detroit remarked that I presented a pretty darn healthy picture for someone whose records note that her oncologist had been recommending palliative care, we confessed that this returned energy was new. “Hm,” she said, “Maybe the vinorelbine is already working.” (More hope!) It turns out that far from disqualifying me from the trial, she wholly endorses me getting chemo and has encouraged me to continue to get it weekly, if possible, until the 21-day cut-off point.
So, if all goes well, I can begin the trial in May. I will get TDM1 plus two other drugs, pertuzumab and Taxol. They’re being tested in combination for the first time together, which is why this is called a Phase 1 trial, but the drugs themselves are not Phase 1 drugs – they’ve reached far beyond that – and I am optimistic that they can really help me.
What if it works? I think it really could. Really, I do, because Dr. Detroit does, and she’s been around the cancer block a few times.
But first, all must go well. Meaning I have to get through at least five more weeks without my health deteriorating any further, I have to navigate the not inconsiderable administrative hurdles of getting my records transferred to Karmanos, I have to continue to get vinorelbine (and even lobby to get an extra dose, if possible) and I have to raise massive amounts of money.
But most important of all – and here, ladies and gentlemen, is the catch – there can be no brain metastases. Because if there is, I am not eligible for the trial. Period.
Or, as I like to say, if there is cancer in the brain, I can’t get on the train.
So, even though the CT scan was clear, everything now depends on an MRI of my brain. I believe I can get through all the other challenges, but this one thing I just can’t control. Why is there an aura in my right eye? Go away, damn aura. Out damn spot! Becasue having just found hope again, I can’t stand the idea of losing it so soon.
Still exhausted and weak but now capable of being vertical for short periods. Thank-you, thank-you, thank-you — your words carried me and comforted me. As did my mother, my dearest friends, my family, and my incredibly incredible husband. Everyone managed to hold me together, distract Georgia, feed and water me (despite my protests), prop me up, tuck me in and generally get me through. Their care and your messages reached me through the fog of fear and pain and reminded me that when I fall I can stay down for a while. And then I can come back up swinging. I’m not lacing up my boxing gloves just yet, but at least I’m eyeing the ring again.
My husband on the other hand seems to be in full swing. Today he woke up and left the house early for an unscheduled confab with my oncologist. By 10:30 I was having a CT scan of my brain, by noon, bloodwork, and a couple hours later, chemo. It’s the one we were holding in reserve, vinorelbine, and my oncologist made special arrangements to get it administered today so that I can still go to Detroit tomorrow. And I am going to Detroit tomorrow, oh yes I am. If I have to be carried into the car and out again at the other end, I’m going.
My uncooperative and obstinate cancer may not respond to this chemo — given its history of response to standard treatments – but then again, it may. Even if it slows down just a little bit, it will be worth it.
This chemo may also get me disqualified from the Detroit study, but then again, it may not. My family, my oncologist and I all agreed that we have to take that chance; I simply can’t go another 5 weeks without trying some kind of treatment. Some kind of something.
So, even though I am typing this with one hand and only one eye open while lying down in a vegetal state with an excruciating, pounding headache, I am actually feeling better. All is not lost. There is action, so there is hope.
And best of all? The CT scan showed that my brain is CLEAR!!! I was warned not to get too excited since an MRI will be required to be sure that there is nothing evil lurking in the neuro-spaghetti, and of course those pesky ”auras” and headaches still need to be explained… but don’t get too excited about a clear brain scan??? That’s a tall order, given the shortage of good news around here. How about just being incredibly relieved and grateful that today at least I don’t have to reckon with cancer in my brain. Today, and maybe a few more days. Maybe lots more days.
Yes, I can hope, and I try to. But yesterday I met with my cancer shrink whose horrific job it was to tell me that I also need to recognize that this cancer is crashing through every obstacle we put in its way, and the reality is that maybe nothing — no treatments or trials or anything we can throw at at it — will stop it from killing me. My amazing cancer shrink who by the way I truly believe is one of those rare people who is doing what he was put on this earth to do (he really is that good at it.) Unfortunately this is what he was put on the earth to say to me yesterday.
Not that I hadn’t already recognized it and begun to wrestle with it on my own, and with my family and friends. But when your shrink tells it to you… ouch. Holy Moses, it’s real. It’s moments like those that you realize this isn’t one of those nightmares you get to wake up from. It’s moments like those when the world freezes and you feel like you have just glimpsed the way the whole thing works but it doesn’t matter anyway because all you want to do is love the people you love and live the life you love living… except maybe you won’t get to do that anymore.
What do you do at a moment like that? I just cried big fat gigantic splashing tears, and when they slowed down enough that I could look him in the eye I said, “My god. I’d really f**king hate to have your job right now.”
So this is where I am. This is where my family and I have to live right now: on this razor’s edge, this impossibly narrow place right smack between the terrifying reality that perhaps nothing can stop me from dying from this cancer, and the slim shiny hope of a clear brain scan and a meeting in Detroit.
And so far, the only way I have found to stay sane while living in this narrow place is to say it to myself every day, several times a day, and many times throughout the night:
but what if it works?
Detroit said YES!
It’s a clinical trial testing the promising TDM1 in combination with two other drugs, and the doctor leading the study is a very well-respected and renowned oncologist. Plus, I spoke to her on the phone and I really liked her moxie. Detroit is the closest-to-home of all the cities I have applied to – and we have almost-family friends there, which is a great comfort to me as I consider being away from my own little family for long stretches.
I am not in yet. I still have to qualify for the study, which means passing a barrage of physical exams. My most specific fear is that these migraine auras I’ve been getting and the blurred vision I sometimes experience portend brain metastasis, which would exclude me from the trial. On the other hand, I’m totally exhausted and all I do is work on a computer all day long, so maybe it’s just eye-strain. I was saying to a friend earlier today, it’s funny when it gets to the point that the idea of cancer in the brain isn’t scary in and of itself but rather because it might mean I’m not eligible for a clinical trial. (Well, I guess that’s funny surreal, not funny ha ha.)
There’s another problem. Assuming I qualify, my place on the study will not be open for another five weeks from now.
I think we all know I can’t go another five weeks without treatment. I barely have the strength to type this post. And if I fear brain metastasis now, I can be fairly certain of further metastasis to somewhere in five more weeks without any treatment whatsoever.
The good news is that this trial doesn’t require patients to be treatment-free for four weeks prior to start-date, only three. So I need to access some kind of treatment now, for the next two weeks, and then stop 21 days before the start date of the trial. This is precisely what the study doctor recommended on the phone this afternoon. In fact her first questions were all about how I’m feeling and what we can do to improve things before I begin the trial.
So, what indeed can we do? Radiation? The last-straw chemotherapy? A combo of approved drugs not currently approved in combination? I have a call scheduled with my oncologist when she’s out of clinic later today to discuss the options.
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