Follow Leanne Coppen's brave fight against breast cancer as she blogs candidly - about the ups and downs of treatment, kinship and reflection. In turn, share how breast cancer has impacted your life. Draw comfort and inspiration from our vibrant, supportive sisterhood of women whose lives have been touched by the disease.
On the way to the hospital this morning, as we navigated the morning rush hour / rainy day traffic, my husband and I were saying that we would just for once like to leave one of these meetings with some really good news. Just a little luck, that’s all we wanted. Sometimes it feels like we’ve been so beaten down with bad news and raw deals that just a tiny bit of good luck would send us into paroxysms of glee and gratitude. We’d be so giddy that people would cross the street when they saw us coming.
So, because the universe has a sick sense of humour (and has obviously bugged our car) when we arrived at the normally chaotic, totally un-parkable hospital, we found the world’s most perfect parking spot waiting for us right in front of the entrance to the breast clinic elevators. Imagine – in the pouring rain, armed with a broken umbrella (I pulled it out of the stand in two pieces this morning) we beheld this beautiful, glorious parking spot – I swear it almost glowed. It almost made that chorus-of-angels sound. We had to laugh: just our luck that the answer to our prayers for good luck would come in the form of a great parking spot.
Well, I’m very happy to say that the good luck didn’t end there today. Ladies and Gentlemen: I have great news, good news and no news!!
First, the great news: The CT scan showed no spots in my brain! My notoriously low blood pressure is the cause of my dizziness and I can take a break from worrying about nasty things growing in my brain. I know some of you won’t be able to resist the airhead jokes (you know who you are… Shawn Coppen) so I’ll beat you to it: Finally, we have proof that there is nothing in my brain! And that’s fine with me.
Next, the good news: The lymph node tumours have either shrunk or stabilized! Those one or two lumps in my neck are indeed getting smaller (okay, so maybe this counts as great news!) and the others haven’t managed to get any bigger. Stabilization is almost as good as shrinkage, because, as my oncologist explained, Tykerb/lapatinib gradually stabilizes tumours over time and then begins to shrink them, hopefully all the way to oblivion. So for now, stable is just fantastic in my books.
And finally, in the no news department: Well, it seems there was an error. The analysis of the chest CT scan was compared to an old scan from last year, rather than my most recent scan in August, so it’s no good. My oncologist has ordered a re-analysis against my most recent chest scan, so we can see what’s going on with the spots between my lungs. Reassuringly, my doc says her initial reading is good, but she will call me tomorrow when she has the complete analysis. No news – while not as thrilling as “no new spots,” “shrinkage,” or “stable” – is still good news.
So, I’m massively, tearfully, hugely relieved. And, oddly, also deeply thankful, though I’m not precisely sure to what or whom. But the gratitude I feel is strangely palpable; I can literally feel it emanating from me. Also, I find I’m physically exhausted. Like, knackered. I guess all the tension that I have been carrying has finally been released and my body wants me to let it rest now. Which I will gladly do, as soon as I post this.
Tomorrow is another day – for chest scan results and parking spots – and let’s just hope the luck continues!
On Friday I had CT scans of pretty much everything but my arms and legs to check the stage of my lumps and bumps as compared to three treatment cycles ago (that’s just over two months ago.) We’ll get the results Thursday morning, when I go in for my regular clinic appointment.
Normally a head scan wouldn’t be included but I’ve been having some dizzy spells and frankly they’re freaking me out a bit. Despite my best efforts, the words “brain tumour” crept into my mind like sneaky little spiders leaving clingy cobwebs of fear behind. Reassuringly, my oncologist said that the problem is more likely related to circulation (it mostly happens when I stand up or get out of bed) but since I have a pretty good record of reporting symptoms that turn out to be indicators of disease progression, she’s not messing around. She tagged an “urgent” head scan onto my scheduled CT so we can get all the results at the same time.
And so here I am again, trapped in the hope-fear continuum, as I always am whenever I wait for the results of tests like these. No matter what I’m doing – working or buying groceries, talking or typing, listening or laughing – I can feel the almost magnetic tension between the poles of hope and fear. It feels like walking a tightrope, where any slip can hurl me either into terror or wild optimism.
And this time in particular there’s a lot going on, pulling me in both directions. There is the fear that the scans will reveal tumour growth or new spots, possibly in my (gulp) brain. I’ve also noticed pain at the site of my original tumour, the one long-ago removed, and …is that a little lump under my arm??
But before I spiral down into the murky depths of Fearsville, let’s just shake off the slime of terror and foreboding for a moment and give the other end of the spectrum a chance. Because there is also the lure of hope: pure and shiny and just as powerful a pull as the gravity of fear. And this time, offsetting the whirlpool suck of fear, I have to say hope’s got a pretty good leg-up. This time, I actually believe I have reason to be hopeful – dizzy spells and phantom tumour pain notwithstanding.
Even though I’m superstitious enough to hesitate to blog it out to the universe for fear of jinxing myself, I’ve decided that I will share why I’m leaning toward hope because I also have a cockamamie theory that other people wishing for it too might help to make it come true. So, here goes: I can feel that the lumps in my neck are getting smaller! Its not just my imagination – my oncologist has on two occasions made a happy/surprised face and a little “Hm!” sound when examining me in the past few weeks. (She is not the overly effusive type, so for her, I like to think “hm!” is the equivalent of jumping up and down and high-fiving me.)
Anyway, I’ll know on Thursday. In the meantime I’ll walk the tightrope and try not to go completely mad. Although I confess I’m rubbing my shrunken neck lumps like lucky pennies, and giving my brain and under arm lump 800-pound-gorilla status just by dint of the concentration it requires to not think about them.
Luckily, I had a visit with my amazing cancer shrink yesterday, and he says “What-ifs” are strictly off limits. No matter how positively you spin a What-if, reasons my amazing cancer shrink, it invites its opposite, thereby opening the door to anxiety. And nobody wants to live in that house, located, as it is, in the reeking swamp of Fearsville. So I just have to stay with what I know, which, right now, is …nothing. Nothing is pretty hard to hold onto – but even if it’s not as great as good news, it’s still better than bad news.
Holding onto nothing… Oh my, my, my. That’s the thing about cancer: you might beat the disease, but you’ll probably go crazy doing it.
Below is a comment I recently received in response to an earlier post, from September 17th. The comment comes from a man who is desperately trying to help his wife, Deborah, to gain access to and coverage for capcitabine (Xeloda.) Deborah has exactly the same kind of cancer as I have: Stage 4, metastatic, HER-2 positive cancer that didn’t really respond to Herceptin.
I find this woman’s predicament heartbreaking and very disturbing, especially since I have coverage and access to the very drugs she needs, while she (living only a few kilometers away) does not. I guess I don’t understand the meaning of the word “Universal” when it is modified by the term “Health Care.”
I’m posting this story in case anyone out there can help this family in any way – ideas, programs that you might know of, clinical trials, other drugs, anything. I’ve already asked my hospital social worker if she knows of any organizations that might be of assistance. If anyone has any suggestions, please post a comment!!
Here is the original message from George:
Congrats on getting the treatment you needed, wish I knew if it worked for you? So it will help us in the battle to get it covered for my wife.
My wife, as the story below tells, is in need of the same drugs. But I have no drug plan, nor $8000 a month. Or a house to sell.
With a new CT scan with contrast to see if it has gone into her brain, this is Nov. 10/09.Here is her story, from a caregiver’s eyes:
Oncology patient at Brampton Civic Hospital, in Ontario. She has been diagnosed with metastases breast cancer, stage 4, inoperable with HER2 receptors. Treatment of Trastuzmab, Gemcitabine and Docetaxel, started on April 21, 2009 and ended on July 30, 2009. The last and final treatment was cancelled because this cocktail was ineffective.
Then the NFL protocol was then given and cancelled after the 2nd bout, because it made her even sicker. She was placed in the hospital with a fever and low white counts. I.e. ABS NEUTS 0.4
Primary is Dr. S. Reingold of BCH. We spoke to the Oncologist at the clinic, who then informed her, there is another treatment. Using the drugs called, Xeloda and Tykerb, this was on Aug. 10, 2009. At this time she was informed that this treatment is not covered by ODB. She is presently on O.D.S.P. for Truncal Neuropathy (2003).
The doctor at the clinic spoke of writing a letter, for assistance in paying for this treatment, which costs about $8000 a month. I have a copy of these letters dated Oct 8/09 and Oct.15/09. On Oct 8/09 and Oct 29/09, EAP said Xeloda was not covered in combination with Tykerb, though still under review by the CED.
First of all, what more is needed than, she is Stage 4, Inoperable and last but not least WILL DIE, if she does not get this treatment! I find it very appalling that if these drugs were to be used by themselves, ODB would have no problem in their coverage. Other provinces and countries are using them in combination, why not Ontario?
I have been keeping a documented record of all tests and medications, taken and given, since chemotherapy started. Every MIR, CT scan and hospital visit I can get, that the hospital will give me. Some of the hospital reports will not be given to me, claiming doctor privacy issues. These latter ones, I deem needed in this personal file, which I am recording for her, because her memory is not what it used to be.
A little personal history:
Deborah W. had been a book-keeper for a law firm for over 10 years and became Assistant Office Manager, in two years. After leaving this position, she was again a book-keeper for a Logistic company. Taking care of their books, this consisted of 3 companies, NO small task by any means. After being inflicted with diabetic Truncal Neuropathy (2003). She was unable to go back to work because of the pain and memory loss, due to the medications. In and around Oct. 2008, she began to overcome the aliments of the Truncal Neuropathy and two near death experiences. Just to have it be replaced by Cancer (five months later) that was never detected, even though she told her doctor of the new pain under her arm, till it was too late. Now again her life has become, nothing but pain. Also, CANCER took her mother and father.
Then in March, 2009, came the real blow to everyone involved, the words, INOPERABLE CANCER, 2 to 4 years to live. But this may not happen, since the so called normal chemotherapy did not work. She is also a loving mother of two beautiful children, her daughter Jennifer 17 years old and her son Andrew age 23 years old, and with his girlfriend Elizabeth, their son Ethan, age 18 months. All she wishes is to watch them grow up!
I have known this woman since 1978, and we were married in April 27, 1979.
All I can ask now from anyone is, how can I get these drugs approved and covered?
Regards
Georg W. (Caregiver)
Update:
We are and have been asking the EAP to help cover only the Xeloda since, the makers of Tykerb, GlaxoSmithKline has stepped up to the bat. They are giving us Tykerb for free on Humanitarian reasons. Tykerb being the more expensive of the two drugs. Roche, the makers of Xeloda, are asking for us to cover 75% of their product.
Here is a photo of Deborah and her grandson at Halloween, with a caption from an e-mail from George:
“I’ve learned that in putting a face behind any story, can help even the hardest heart to open up, to the feelings it was meant to have. Sorry to sound like a commerical, but I’ll do anything to save my wife’s life.” ~ George W.
Now this is what I call a Cancer Perk!
I just received and set up my new (free! pink!) BlackBerry Pearl, courtesy of an amazing little program from Rethink Breast Cancer and Telus Mobility called Technology & Treatment. Basically it means I can stay on top of the total chaos that is my life while having one less bill to worry about – the program offers women in treatment unlimited texting, browsing, e-mail and nationwide calling for free. Yes, I am totally serious. I wouldn’t make this up. For those of you now thinking, ‘How can I get me one of those?’ I lifted this off the Rethink Breast Cancer site:
Who is eligible: Young women in Canada (in their 20s, 30s or early 40s) who are newly diagnosed and/or in active treatment for breast cancer. For more information, contact Rethink Breast Cancer at 416-920-0980 or toll free at 1-866-RETHINK. Or, send an email to support@rethinkbreastcancer.com
I can now read and reply to blog comments from… well, wherever I may be. Plus I’ve already put all my gazillions of appointments in the calendar – CT scans, clinics, blood work, social stuff, work stuff… the whole nine enchiladas, as my friend Steve would say. And yes, I did set up a big fat reminder that notifies me when it’s time to take a break from chemo, so hopefully I won’t ever screw that up again.
Anyway it’s lovely. It made my day. And the people who help you set it up – both at Rethink and at Telus – are super nice and very helpful. Call them. Do it now. Stop reading, you should be calling. Dial now, please.
Thanks to all you smart, kind people at Telus & Rethink!
If you checked in yesterday, you might now notice that there is a post missing; one in which I was letting off steam about a fruitless and frustrating encounter at my hospital on Friday. I may have even said some… lets call them colourful things about the person I had the displeasure of encountering. Anyway, my dad lives in the States, where people are forever suing each other, and he thought my post might be a bit slanderous, so I pulled it.
But I wonder if I should have? Apart from a few speculations about this person’s pressing extra-curricular appointments, nothing I wrote was untrue. I may have resorted to name-calling, yes, but at best that makes me uncharitable and at worst, immature. Is it really grounds for a lawsuit? And who sues a cancer patient for complaining about a doctor’s (appalling, unacceptable) lack of bedside manner?* Wouldn’t that be terrible press for the hospital?
Well, the unofficial (that means free) advice I got from a lawyer friend was “tone it down or take it down” so we may never know — the post has been pulled. Let me be clear: not because I think it was in any way slanderous, but because if someone else thinks it is (like a team of hospital-backed lawyers, for instance) then the person in question wins and I end up with something to really be irked about – and nowhere to blog about it.
*For the record I’m not talking about my oncologist. I love my oncologist and if anyone badmouths her they’ll incur my verbose and scathing ire. This other guy however… Well, you know what they say: if you don’t have anything nice to say, come sit next to me!
