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!
Cancer is Crap 
You can do it!!! I can see you flying down there in your own super hero cape! It’s time for wonder woman!
I’m with you, that is bizarre. I have sort of the opposite situation, as I’m an American living in Canada. I do not qualify for OHIP or have any Canadian insurance. I pay cash. Up front. However; while not life threatening, within the past year or so my girls and I have been denied treatment at several walk-in clinics in Ottawa. Some mumbled nonsense about the government not allowing them to treat us was offered by way of explanation. I’m with you, what on earth does that have to do with anything when I have cash in hand. Something just doesn’t sound right does it?
Your outrage is so completely justified at this strange turn of events, but YAY for Doctors who press forward when faced with hurdles. I know of someone in the trial at Karmanos who recently showed slight progression on her first treatment scan and Dr. Detroit found a way to justify keeping her in the trial for at least 6 more weeks. The rationale was that just maybe that tiny spot was missed in the original pre-trial scan; was there all along and consequently isn’t a case of progression afterall. That is one Dr. definitely not afraid to go to the wall. You are in good hands.
You called it from the start – that Dr. Detroit sure has moxie. While it sounds like you may have a way around this current quagmire you may want to call the constituency office for your MPP and MP. They’re supposed to be there to serve their consituents; to help them wade through issues and red tape. Perhaps they could help get the approval (???) that you need.
P.S. I LOVE the song clip you included! Hold on! xo
You can do it Leanne!!
I just KNEW our Detroit was better than depicted in current media – except, perhaps, for finding food in the area by the hospitals! Anyway, praise goes to Dr. Detroit and to you, Leanne. Yes, this fight will be worth it!! Detroit awaits you with open arms!
i’ve been thinking about you alot lately and i found some words from Walt Whitman to nibble on..
O Me! O life!… of the questions of these recurring;
Of the endless trains of the faithless—of cities fill’d with the foolish;
Of myself forever reproaching myself, (for who more foolish than I, and who more faithless?)
Of eyes that vainly crave the light—of the objects mean—of the struggle ever renew’d;
Of the poor results of all—of the plodding and sordid crowds I see around me;
Of the empty and useless years of the rest—with the rest me intertwined;
The question, O me! so sad, recurring—What good amid these, O me, O life?
Answer.
That you are here—that life exists, and identity;
That the powerful play goes on, and you will contribute a verse.
I love Dr. Detroit, cape and all. Hope you’re feeling better today Leanne!
xo
This feels like karma. You absolutely deserve Dr Detroit to be breaking down walls to get you into the trial. Between the two of you (& your mom, husband and everyone else in your court), I am confident you’ll break down any other barriers put in front of you. You will get to Detroit.
Ok that is enough, Federal or Provincial craperment should stay out of someone that pays for their own treatment!
Here are some e-mail address folks, you all know what to do after this.
Dalton McGuinty
Premier of Ontario
http://www.premier.gov.on.ca/feedback/default.asp
Hon. Deb Matthews Ministry of Health and Long-Term Care
dmatthews.mpp.co@liberal.ola.org
Lets hope after they hear from all of us, Leanne will be on the Bullet train to Detroit.
Love and positive thoughts to you and family Leanne.
Georg W.
I don’t know what to say. I can’t believe – well, actually I can, having worked with the Feds – that you are being held up by nonsensical red tape, for no apparent reason. Certainly for no defensible reason, in my opinion. I am keeping my fingers crossed (they are beginning to look like pretzels with all the crossing done lately)that you are making some progress. Thank goodness you have lucked in with Dr. Detroit. Thinking of you lots.
G.
Hello Sweet Leanne, what I love about Dr. Detroit (and you) is that there are no glass ceilings, walls, doors or anything else that can stop you. We all have to watch, listen and learn.
I want you now to concentrate on getting strong. I want you to eat like you’re working on a farm or something. Take vitamin and mineral supplements and anything else that it might take to get you where you have to be and do it slowly and steadily. It all has to stay down. Thinking about you. Love and Shalom, Sarah
wtf??!! Haven’t you been through enough already? Now you have to possibly fight the Government? Fighting for your life isn’t enough for the past two years?!! Again….I say WTF? I am grateful for the insight and experience of your new Oncologist and the awareness of not wasting any more time.
We send our love and strength to you.BTW I love this song….”and if you get cold, I’ll be your cover” Great line. Burton Cummings does a version of it. I have older sibs who introduced me to The Guess Who way too young.
hello blog readers!!!
as you know, there is a fundraiser being held on May 10th at the Carlu to help Leanne and her family to cover the costs of her upcoming treatment.
I am looking for items for a silent auction that will take place that night…
if you have anything to donate (service, item, gift certificate) please get in touch with me and I will gladly make arrangements to collect!!
many thanks in advance.
natalie
natalie@sarahrichardsondesign.com
Hi
Could you again please post the link for donations through pay pal. Thanks.
http://www.canceriscrap.com/
website for donations…
thanks!
natalie
Leanne,
I was forwarded your blog and just read several of your posts. I am a breast cancer survivor in the Detroit area and wanted to reach out to you. My friends and I would like to help you out once you arrive. When I was going through treatment, my friends made a schedule and brought me dinners, lunches, etc. We’d like to do that for you too and hope you will accept. We also have 10 year old girls that can offer their help as mother’s helpers. My email is ellyndavidson@yahoo.com. Hope to hear from you soon.
ellyndavidson.com