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!
THERE IS NOTHING IN MY BRAIN!!!!!!!!!!!!!! EXCEPT MY BRAIN!!!!!!!!!!!!!!
The MRI came back clear! I can hardly believe it (especially as I have a gigantic headache aura as I type this) but it is the best news ever!!
I’m giddy, I’m elated, I’m relieved… I’m stunned and thrilled. Hope - that fickle flame - has been reignited and doused with gasoline! The champagne is chilling in the fridge; when my husband gets home (and once we stop hugging and crying) we’ll drink to healthy grey matter! Could there be a better, happier toast?
Detroit here we come! Nothing in the brain means I’m getting on that train!
These days my emotional state is so tied to my (very volatile) physical state, it can feel a little like a mood disorder. I was doing fine yesterday, tons of energy, optimistic as can be, when at suppertime I coughed and – POP! – the rib pain came searing back into my body and knocked me on my kiester.
Ah, pain. You exhausting and depressing thing. As if the reality of my illness and the difficulty I have breathing weren’t terrifying enough. As if I didn’t have enough going on with the coughing and headaches and auras and general weakness. No, we need to round it out with a little excruciating pain. Come on.
So I took one of the heavy painkillers I like to call Big Daddys last night so that I could sleep. I’m afraid of the Big Daddys because I know they’re highly addictive, and frankly I don’t need to add Pill Junkie to my current list of problems. And I also don’t want to be feeling so painless and groovy that I’m not able to connect to the people and world around me. So, until now, Big Daddy and I haven’t made each other’s acquaintance.
But the fact is I need sleep, and I need strength, and pain makes me frightened and depressed. So I called in Big Daddy. At bedtime, I popped one. And boy did it work! Blissful floaty pain-free sleep… for exactly 4 hours, at which point a coughing fit overtook me and I ended up in tears, sitting at the edge of the bed wheezing and shaking in the dark, while my husband rubbed my back and I tried to calm down enough to take another Big Daddy. And? Sweet sleep again… for a meagre 4 hours, when the coughing trauma was repeated, complete with tears and back-rub. And then, in the morning (this is the kicker) a hangover!! No, really, a bonafide fuzzy-headed hangover! Without the party! Like that’s fair. Obviously this whole pill-popping thing needs some fine-tuning. And Big Daddy may have the strength, but his stamina needs work.
Meanwhile, Dr. Detroit called with what should be amazingly fabulous news: it is possible that my spot in the study will open early and I could begin in a couple of weeks!
But before we go popping the champagne (or the Big Daddys) there is a catch. I felt renewed and improved following the vinorelbine last week, but 8 days later the symptoms have come crashing back – the coughing is worse, the pain has returned, the aura that shrank and shrank and shrank has begun to unshrink – and I am afraid that if I have to go 2 weeks without any treatment I will be back at the Brink. And nobody, least of all me, wants me going back to the Brink.
The idea of course is that the study would carry me far, far away from the Brink forever and happily ever after. But if I can’t make it to the study start day, there’s a flaw in the fairy tale. Even if I make it, I could be deemed too weak and thus rejected. I have no idea how bad things might get in two weeks, but if last night was scary, what shape will I be in 14 days from now? Or 21 days??
So, I want another vinorelbine treatment tomorrow. Even if it means waiting 3 weeks rather than 2 to begin the study. I reason that I went about 7 weeks without treatment and it did a lot of damage, so I need at least a couple of weeks of consecutive treatment to restore some strength before I do another chemo-fast in preparation for the clinical trial. But I actually have no idea if this is medically sound reasoning, so I’ve put it to Dr. Detroit via e-mail, and await her reply.
And, finally, as if that’s not enough drama for one post: my oncologist’s secretary called in some kind of massive favour and managed to get my brain MRI scheduled for tomorrow afternoon.
Well, at least it’s never dull around here.
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?