Archive for the ‘Support’ Category

The presence of hope…

We don’t often approach grief in our discussion of cancer and very rarely do we talk about loss. But the possibility is sometimes lurking there in the doorway.

Amanda Bennett brings to TED her own story of love, diagnosis, pursuit of recovery, and the act of letting go. in this video, she does admit to the reality that “the best doctor in the world has never succeeded in making anyone immortal.”

But she also adds that “the overwhelming presence of hope isn’t denial – it’s part of our DNA as humans.  And it’s time our healthcare system started accounting for the power of that hope.”

A lovely story told:


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Saving and spending…

time copy– philosopher Lucius Annaeus Seneca in a letter to his friend

featherphoto © Jeff Kopito

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Clocking in…

Looking back, I started this little enterprise in December 2011. Got it up and running…and then, as the media reports go, went out for the morning paper and didn’t come back.

There are any number of reasons why I took a hiatus – job stresses, picked up on my photography, writing, baking, house chores, avoiding house chores, supporting my other blog, etc. Time is a limited resource. But as I often tell my fellow veterans (I don’t really like the term “survivor”), we’ve been given time. So why not use it…

It’s an ironic twist of events that brought me back. I’ve been involved in the cancer veteran community for several years now thru SPOHNC, a head-and-neck support organization. I’ve met some incredible people, the ones who came back from surgeries, chemo therapy and radiation treatments, and countless hours in waiting rooms and diagnostic labs. I’ve also had the opportunity to counsel those incoming patients like myself from initial diagnosis thru treatment and finally recovery.

As of tomorrow, I’ve been given the opportunity to co-chair my chapter support group, one of three locally in this region and one of over 125 chapters across the United States. This first evening that I will be sitting in the front of the room will also mark six years to the day that I was diagnosed with sphenoid sinus cancer. What a long strange trip its been…

Over the last few years I’ve come to understand the incredible power and depth of the patient community and what we can offer each other not only in practical knowledge and understanding, but also the street wisdom that comes from cancer treatment and its aftermath. There is nothing more comforting than sitting with a person who has lived what you lived and understands the fears, frustrations, and isolation that a cancer diagnosis can inflict. And how to get you thru treatment, recovery, and the souvenirs they leave with you.

So I’m back.

I promise to post regularly or at least every now and then. Maybe more now than then. Because now is what we got.

Let’s roll…

rancherored ranchero
© Jeff Kopito

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Avastin counterfeit…

The maker of the widely used Avastin cancer drug said Tuesday that it is warning doctors, hospitals and patient groups that a counterfeit version of the medicine has been found in the U.S.

Tests of counterfeit vials of Avastin showed that they didn’t contain the active ingredient in Roche Holding AG’s intravenous drug, according to the Swiss company’s Genentech unit.

It isn’t clear how much of the counterfeit product was distributed in the U.S. or whether it has caused any harm. A Genentech spokeswoman said the company doesn’t know if any patients were given the fake drug.

– full article at The Wall Street Journal, Fake Cancer Drug Found in U.S.

According to The New York Times, there are obvious differences between the actual packaging and the fake:

– Genuine Avastin, known chemically as bevacizumab, has Genentech on the label, which is all in English.

– The counterfeit says Roche and the label is in French.

– Lot numbers of actual Avastin include six digits with no letters, while the counterfeit lot number begins with a letter.

– The counterfeit bottles of Avastin are also missing information on the label, like “for intravenous use.”

Add this to the shrinking inventory of current chemotherapy drugs, and the war on cancer takes on a different meaning…

This product image provided by Genentech shows a vial and package for the cancer drug Avastin.
(AP Photo/Genentech)


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Pinked off…

I’ve written before that I don’t agree with turning cancer into a festival. I don’t participate in marches, walk-a-thons, parades or spin cycle events. I also believe that cancer shouldn’t be considered merchandise either. Although it’s empowering to identify cancer with a color like pink, I don’t believe it belongs on Cheerios cereal, Mike’s Hard Lemonade, Eureka vacuum cleaners, or perfume bottles. My own company was approached by a group that wanted us to help them merchandise pink potato chips.

The power of pink has its unintended consequences – the majority of attention and research dollars seems to go to breast cancer as if that is the only type of cancer we’re  struggling with. And maybe there’s a bit of gender politics in it – attacking the breast is attacking the female and the threatening associations that come with it. Breast cancer, quite literally, attacks motherhood itself.

I found it quite unusual when Komen attempted to cut off funding for breast screenings by Planned Parenthood since that literally threatened the breast that they were trying to protect. Most especially since cutting off  those funds would now cut off the opportunities for screenings for women who ordinarily wouldn’t be able to get them. And the decision to cut those funds was based on an “investigation” being conducted by a congressman from Florida.

Even if the investigation turned out to be just another act of political pandering, there is guilt assumed. Which brought the Komen foundation down that same slippery slope.

There is no denying the fundraising juggernaut that the Komen foundation is. They have created a brand that is so powerful, that people believe just by wearing the color pink they can cure cancer. But that powerful muscle has been dragged into an arena where the waters are far more polluted with politics and dogma than with science. The fallout from their decision, and their sudden reversal, isn’t over. What the final impact will be on their outreach, on the agencies they support, and even on their own organization is yet to be felt.

One thing is certain – the color pink will take on a different meaning.

Portrait from The Scar Project © David Jay

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There are a lot of doctors who live with us in CancerWorld. I have 5 active doctors in my own that I see regularly – 2 oncologists (radiation and chemotherapist), cardiologist, ENT surgeon, and dentist. Toss in the occasional dental hygienist, gastroenterologist, endocrinologist, ophthalmologist, and now an audiologist, there isn’t a month that goes by that I’m not sitting in a waiting room on at least one day.

I’m quite satisfied with these physicians. But – what if I get a referral to a physician I don’t like and want to find one on my own? What if I move? What if they move or retire? What if I just simply feel that our relationship needs to come to an end? And what if I need copies of my medical records to take to a new physician?

I’ve heard a variety of stories including physicians and hospitals who have outright refused to provide copies, practices who seek to charge exorbitant fees for copies. physicians who retire and without permission transfer records to other physicians, and some physicians and hospitals who simply don’t respond to the request.

Here’s the bottom line:

You cannot be denied access to your medical records.

Now to keep this clear – there is access to your medical records and then there are copies requested of your medical records. Legally – in New York state for instance – you must be provided access to your medical records within 10 days of request. You may have to do that in writing. As far as copies of your medical records, although there is no specific timeframe, it’s generally accepted that copies of those records must be provided to you within 10-14 days of written request.

You are also allowed to be charged a reasonable fee – again, in New York, that would be .75 per page.

Medical records must also be kept for a minimum of 6 years following the patient’s last visit. Children’s records must be kept for a minimum of six years or until they turn 19 (hospitals must hold on to them until they turn 21).

And at no time can you be denied access to your medical records even if you haven’t paid your bill. Or if you can’t afford to pay the copying fees.

There are some exceptions to records that you can see – you cannot see or get copies of personal notes and observations by the physician, for example. But if you’re denied access for any reason, you can file an appeal to your state Department of Health. And the refusing physicians is supposed to explain the process to you in a written form.

If you would like to see the full explanation of medical record access for New York, you can visit here:

NYS Department of Health – Patient’s Rights

Although there should be uniformity across the states, you can also check with your own state for final confirmation.

It should be a habit to keep ongoing records in any case. I keep copies of bloods tests as well as written reports of all scans including MRI’s, PET, and CAT. I use them to check differences between test results and ask any questions if I seem something I’d like an answer to. My radiation oncologist has also provided image scan copies to me to provide to my general physician. I’ve also requested DVDs with images from the image centers that I’ve had appointments with.They usually provide them at minimal charge ($5) and also provide me hard copy printouts.

You have a right to access your records – and for us in CancerWorld, these records are a link to our past and our future.

(*Note – please don’t hesitate to comment on the above especially if you feel an update is necessary)

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Always asking…

My father-in-law has a bit of a pointed story when you complain about a doctor to him – and it goes like this:

Q: What do you call the medical student who graduates at the bottom of his class?

A:  Doctor.

It does have a bit of truth to it – although may seem a bit harsh especially if you’ve experienced the support of a skilled physician. But book knowledge is not what makes the physician, not even the tutelage or legendary beatings and beratings of their seniors. A good physician is built with the help of his patients and the driving instinct to ask the question “Why”.

Not so oddly, it’s the same question that brings you to the doctor’s office in the first place.

I went nine months without a proper diagnosis with only a single symptom – I was losing muscular control of my left eye. Two ophthalmic surgeons, in a single visit, determined it to be a self-limiting condition. And that’s where their curiosity ended. Mine didn’t.

I spent nearly five months with a neurologist who I was assured was highly trained, knowledgable and brilliant. On my first visit he determined I had “ocular myasthenia”. And put me through test after test which proved him wrong every time. And every time a test proved him wrong, he found another test to try. Until he ran out of tests and curiosity. And I remember saying to him, in the middle of the process, “You know, I had some serious problems with my sinuses just a few months ago…” He turned his back to me, raised his hand in the air in a halting gesture and said as he was walking out of the room, “This has nothing to do with your sinuses!”

He was almost deadly wrong.

The imaging CAT and MRI scans that were done didn’t completely answer the question. But on several of the reports, the interpreting physician pointed to a small area of activity at my basal skull. And although prompted by that radiologist, no referring doctor sought to find out what that was.

Finally, an ENT surgeon, having hit a virtual and physical dead end, admitted his frustration but sent me to someone he felt had seen thousands of cases similar to mine. He was right – this physician sat down with me on my first meeting with him, listened to my story without interruption, reviewed the binder of reports and stacks of images I brought him, walked me over to a cross-section  illustration of the head, pointed and began, “There’s something going on here in your basal skull…”

I exhaled for the first time in months.

Confirmed with a small surgery less than a week later, a tumor was found in my basal skull, that because of its invasion, had been compressing a small nerve that controlled the movement of my left eye. Question answered.

I had seen some of the most reputable physicians in my area – ENT surgeons, ophthalmic surgeons, neuro-ophthalmologists, and neurologists. The arrogance of reputation and education may have been in the mix. But it was the lack of curiosity, ignoring the question of what else might this be, that limited them in a proper diagnosis.

Questions are what will get you to the physician, help you arrive at diagnosis, determine treatment, and eventually help you thru recovery. Cancer can be at once terrifying and frustrating. But what will get you thru, is ultimately, curiosity.

Never stop asking questions and never stop asking why…


[Image via Tom@hk at flickr…click on photo for full description…]

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