Things I Wish I Was Told

Jeff Tomczek wrote a nice piece a couple of days ago called "The Things I Wish I Were Told When I Was Diagnosed with Cancer."


It's a familiar list to anyone who's been diagnosed; that's not a criticism -- some of us only realize the familiarity after we've read it.

A few that I particularly like:

"You will be determined to have more energy than you do."  I've been fortunate to have had only Rituxan, which knocked me out for about a day or two. But I've certainly known cancer patients who have had stronger treatments, and tried to do more than they could. Tomczek says that you change, and you should embrace this. I think that's good advice, whether or not you had an aggressive treatment.

"Your doctors and nurses will become a source of comfort." I admire health professionals who go into oncology, because almost all of them are wonderful people who deal with some much bad stuff all day. I admire their being able to come to work every day. Of course, if you're a smart ass like me, you challenge your doctor by quoting from medical journals that you know he probably hasn't had time to read yet. Also, you chuckle at how he gets a little embarrassed when he needs to give you a physical exam. These, too, are comforting.



"You will inspire others. It will feel weird." Yes, you may become a role model. Your determination and strength will cause people to say, "I don't think I could do it." And you will smile and touch their hand and say, "Yes...you could." But really you are thinking, "Please, don't let this be the start of a story about someone you know who died from the same cancer." You will change the subject quickly.

For those of us who have already been diagnosed, it might be too late to take this advice. But we can certainly pass it along to others, with our understanding.

It's Personal

I've been debating for the last 24 hours about whether or not to post something about the Supreme Court's ruling about the Affordable Care Act. There are things I try to avoid talking about on Lympho Bob. Politics is one of them. Death is another.  So that makes this topic pretty much the definition of something I should avoid.

But it seems like everyone has an opinion on it, and a bunch of people expressed theirs to me yesterday. I mostly tried to stay measured with my comments, though a couple of times, I did get a little more...personal.

And, to me, this whole issue is personal.

I can't help thinking of a young girl I knew from my support group. She lived in California, 19 years old, a college freshman. Her parents were immigrants, with good jobs. She was studying to be an engineer, like her father. But when she contracted Diffuse Large B Cell Lymphoma, she was dropped from her parents' insurance. She had a course of chemotherapy, and it didn't work. Eventually, she needed a bone marrow transplant.

For about two months, we in the support group got almost daily updates from her. They searched for a donor match. They found a donor. Her numbers got worse. They stabilized a little. Then they got worse again. Then there was a delay. Her parents couldn't afford the $100,000 for the transplant. Her friends -- people her age, who she had just met a couple of months before, when they all started college together -- started fundraisers for her. Nothing major -- car washes, things like that. They were kids, what else could they do? They wanted to do something. The rest of us in the group certainly knew that feeling.

And we kept getting the daily updates. About her health, about the fundraisers, about how she was moving toward her $100,000 goal. And then one day, the updates stopped. We went three or four days without one. And someone asked, cautiously, "Anyone heard anything from her?" And maybe some people knew, or suspected, but I was so caught up in the hope and optimism that she was putting out that I thought maybe she was just too busy with the fundraising. But, of course, after four days of not hearing, there was no good news. Someone posted a link to her CaringBridge blog, with an announcement from her family. And there was a link to her obituary, too.

It hit me so hard. I wanted so much to believe that she was going to be OK. She was the first member of the support group who had died since I'd joined. She certainly wasn't the last. And, unfortunately, she wasn't the last to die because she lost her insurance when she got sick.

So, to me, this is personal. I just don't understand how we can allow things like that to happen. I do truly believe that we live in the greatest country on earth. (I've visited seven others, so I feel like I have at least something to compare to.) But for all our greatness, we let people die when help is available. Bad enough that they die because they can't afford the help. But so much worse, so much more unnecessary, when they did the right thing, got health insurance, were not a "burden" to anyone, and we let them die anyway?

So it's personal. What it is not is political. The individual mandate was first proposed in 1989 by the Heritage Foundation and included in bills by Republicans in 1994. So the idea itself is not liberal or conservative, Republican or Democratic. Why make it so?

I'm not naive enough to believe it can be de-politicized. It's a law, and even in the best, happiest, most cooperative of Congresses, anything can and will become political. But it hurts to think about the 19 year old girl from California, and to think about who else will be a victim of the politics. (And if you've read Lympho Bob for a long time, you know how I feel about the word "victim"....).

Looking at the cancer-related groups I belong to online, I see a lot of resistance and agonizing about the decision. It surprises me. I would think cancer patients would be in favor of provisions that would take away the worry of losing their insurance, or of reaching a maximum benefit. They have their reasons. Some seem legitimate (they may have fewer choices of care), and some seem less so, to me, anyway.  Maybe the individual mandate is not the best way to make this all work. If that's the case, if it's broken, then fine -- let's fix it.

But don't take it away, or wish it away -- not all of it. Many, many people -- cancer patients, especially -- have been given a gift. It would be so wrong to take it back.

Lympho Cubs

Anthony Rizzo had a good night last night for the Chicago Cubs, his first game since getting called up from AAA. He went 2 for 4 with an RBI double, and the Cubs won. He played first base, and he's considered their best prospect in years.

And he's a lymphoma survivor.

Rizzo was drafted by the Red Sox and played in their farm system until 2010, when he was traded to San Diego in the Adrian Gonzalez deal. He played a little bit for San Diego last year, though he struggled a lot and spent some time in the minors. He was traded to the Cubs over the winter and finally earned the call-up this week.

It was in 2008, soon after he started playing for the Sox, that he was diagnosed with Hodgkin's Lymphoma. He was just 18 years old. Last year, he participated in the Tuscon Lymphomathon, and helps raise money for lymphoma research. Which is very cool. Not everyone in his situation is so willing to be public.

By all accounts, he's a great guy, a hard worker, and very determined. And it's nice that he's willing to share his experiences, though even if he wasn't, he would have had someone to talk to: Cubs outfielder Tony Campana, who was diagnosed with Hodgkin's Lymphoma when he was 10 years old.

Two comments about all of this:

First, it's awesome to have role models like this. Not just for kids with cancer, who see two guys who overcame a lot. But for all cancer patients. Heck, for everyone.

Second, what's the deal with Theo Epstein and lymphoma? Maybe it was his experience with Jon Lester and his pal Larry Lucchino when he was with the Sox, and he knows the power of the survivor. And now, with the Cubs, Theo trades for Rizzo.

Good luck, Rizzo. A few good months and you may be elevated to Nodes of Gold....

Life, Interrupted

I've been meaning for a while to link to a New York Times column called "Life, Interrupted".

It's written by a young woman named Suleika Jaouad, and you can find the pronuncation of her name on her website Secrets of Cancerhood, where her columns are also printed.

Jaouad was diagnosed with leukemia shortly after starting a job in Paris when she was in her early 20's. (It's funny -- she refers to cancer patients in their 20's as the "tweens" of the cancer world, too young to know what to do, but too old to be a juvenile patient. I see those of us in our 40's the same way -- there are all kinds of great resources for younger folks, and then people seem less surprised about a diagnosis in someone older. Those of us in our 40's are in-between with no specific means of support just for us. It's funny how you always see someone else as better off than you, even in the world of cancer....Or maybe that's not a surprise....)

Anyway, despite her youth, Jaouad has a nice perspective on things. She's a fighter, clearly, which is very good for her. But she is also pretty reflective about her situation, and offers a lot to think about.

Her latest column, which you can access (along with all of her columns) through the link above, is called "Fighting Cancer, and Myself." She describes a revelation that she had about being the fighter that she is:

"I realize now that the experience of having cancer is more of a tricky balancing act: being proactive about your medical condition, while simultaneously accepting and surrendering to the fact that, at least for the time being, you can’t change your reality as quickly as you’d like to."

That's a pretty tricky in-between-ness to achieve, especially from someone so young. Very zen-like. I like to think I've achieved it myself, keeping constantly updated on what's going on with treatments, and thinking about how it all fits into my future. But also understanding that so much is beyond my control.

That's probably easier for someone like me, who's been watching and waiting for four and a half years now. It's all part of the game for me. Much harder (and therefore more impressive) for someone like her who's still very much in the middle of it all.

But that in-between-ness is really how we all live -- those of us with cancer and without it. We plan for what we can, assuming (or pretending) that we have some control over our lives, but accepting that life changes quickly.

Breakthrough Teen

Forbes magazine published an article a few days ago about a 15 year old kid from Maryland named Jack Andraka, who won an international science competition with what Forbes speculates may change cancer detection.

Andraka's invention is a paper test strip that can detect pancreatic cancer way, way before it becomes invasive. The strip is coated in a solution of carbon nanotubes. (I've discussed nanotechnology a bunch of times here -- it involves tiny particles in different ways.) These nanotubes are basically hollow tubes made up of carbon cells that are one cell thick. They are coated with an antibody that binds with a protein when it comes into contact with it. For Andraka's project, that protein is an indication that pancreatic cancer cells are present.

Other, similar tests are already available for some other cancers. What makes his approach so different is that he found that once those proteins attach, the carbon nanotubes are pushed apart. When that happens, there is a change in the electrical conductivity of the test paper, which can be measured fairly easily.

Compared to the current test for pancreatic cancer, Andraka's test strip is 168 times faster, 26,667 times less expensive, and 400 times more sensitive.

That's amazing for anyone, but even more amazing for a teenager. 

Also amazing is his reaction to winning the competition. Be sure to click on the link and watch the video.

I think, sometimes, the breakthroughs come from people who are not so steeped in their fields. Over  time, we learn to look at the world a certain way. It's the outsiders, the young, the "oddballs," that don't have those limitations. (That's part of  the philosophy behind Stand Up 2 Cancer -- look at cancer in ways that people hadn't before, instead of building on what's come before.) Sometimes they're outsiders and oddballs for a reason, but sometimes they get it right.

Run for your Life

The always awesome Mary Elizabeth Williams has an article on Salon.com today called "Run for my Life!" She discusses the marathon craze -- the increase in the number of people who are running marathons (and half marathons), and her attempt to join them.

Williams has long been a runner, usually topping out at 5 miles, but she found herself, for some reason, signing up for the NYC Marathon in the fall. Williams is a cancer survivor, currently finishing up a very successful trial for her stage 4 melanoma, and she learned that the group Gilda's Club was sponsoring people who wanted to raise money for them by running NYC. Gilda's Club is named for the comedian Gilda Radner, and provides support for cancer patients and their families in lots of ways. (These include a place for kids with cancer, or who have a family member with cancer, called Noogieland, which is awesome.)

And so, Williams is going to run. It seems like it's partly to benefit Gilda's Club, and partly to benefit herself. As she says so eloquently,

But I think for most of us, the real joy and the passion are there in the steps and the miles and the weeks along the way, in the purposeful pursuit of that something powerful within ourselves. They’re there within the singular beauty, in a messy, complicated, often harsh world, of simply putting one foot in front of the other, again and again, until it adds up to something meaningful. Just like life itself. As Shorenstein told our team in that first meeting, “Your achievement isn’t just in getting to the finish line. It’s in getting to the starting line.”

Amen, sister.

I started running a couple of years before I was diagnosed, and I'm convinced that some part of my body was telling me -- someone who hasn't run in years -- that I needed to get ready for a fight. It's not an easy thing for me some days, but, like Williams, I do it for the sense of accomplishing something. If you've read Lympho Bob from the beginning, you know how much my running and my cancer are tied together. Two weeks after I was diagnosed, I ran the fastest 5k I'd ever run, on the hardest course I'd ever run, up a big hill. It meant a lot to me to conquer that hill, physically and mentally, and there are days when it feels like putting in my running shoes helps to conquer some other hills.

I can honestly say I've never had a desire to run a marathon. Probably because I can't imagine finding the time to train. And now, as I slowly build my mileage back up again after a foot injury, I look forward to more races to run, more hills to conquer -- physically and mentally.

(One more link, for Gilda.)

Cancer as Chronic Disease?

Great and hopeful article from Oncology Times last week. The title alone is awesome: "White Paper Prediction: With Sustained Efforts, Cancer Can Become Chronic, Manageable Disease in 10 Years."

The piece discusses a research paper that featured interviews with 30 cancer researchers. The conclusion: even though funding for research is not where it needs to be, we are making advances quickly enough that, if we keep up the pace, we can make cancer a chronic disease -- something that can be controlled.

There's a school of thought that says we may never cure most cancers; the best we can do is control them. We could think of them as chronic diseases, like diabetes. That's "the best" we can do, and that's not so bad. We have enough treatments now that hold things in check without curing them. Rituxan maintenance is a good example -- it won't make it go away forever, but it won't get any worse.

The trends in treatment that might make this happen will be:

• Greater use of molecular biomarkers in the clinic.
• Use of molecularly targeted therapies in combination to form “personalized treatment cocktails” based on each patient’s genetic makeup and cancer biology.
• Evidence-based physician/patient decision making.
• Development of regulatory and reimbursement policies to advance and enhance targeted therapies.

All of them are already being used now. As this report says, a little bit more of a push and maybe we can...well, if not beat it, at least fight it to a draw.

I love articles like this. They give us hope. I've been reading enough about cancer research for the last few years to know that 10 years might be a little on the sunny side, but not completely unreasonable. Good enough for some realistic optimism, anyway.