Wednesday, September 25, 2013

Fantasy Leagues

For years, Dan has put together a fantasy football league.  We are not big gamblers, so for the small cover charge of $20, we could compete for the entire season.  Dan dubbed it “Big Steaks League.”  With the winnings, a big steak dinner is about all you could get.
But this was a way for us to connect with some people that we didn’t see regularly over the fall, touching base, if only for online football smack talk.  And fantasy football had the added benefit of making watching the Browns a bit easier, because while they have consistently struggled on the field (sigh…), I might have a fantasy player on the opposing team.  The matrix of my hopes has become more convoluted and complicated, as you might imagine.

Over the past two nightmarish years, (both for the Browns and for us Ramers) we have continued to watch Cleveland on the gridiron.  However, I have been hopelessly derelict in maintaining my fantasy team.  This was evident on bye weeks, when half my active roster was not even scheduled to play.  I know, annoying.   I am that one in the league, which is the height of rudeness according to fantasy etiquette.  Thank God I am married to the commissioner, although even he is losing patience with me.
It is hard.  We have been pretty busy with cancer, treatments, surgeries and recoveries.  At one point, Dan asked me if I could step away from cancer, from medicine, to let it go and relax.   He has been helping me, to varying degrees of success.

For example, the spring that we wound down with chemo, he put in a garden for me.  I have long loved working the soil, and enjoyed the planning, the planting, the patience, and the hope that goes with gardening. He made a gift of this, to help guide us back to our former life.  Unfortunately, the entire summer was spent finishing chemo, and then day trips for countless follow up appointments at Rainbow Babies and Children’s Hospital.  We also took a hospital vacation to New York and Boston, visiting doctors and geneticists: medical tourism at its finest.  You can easily understand the failure of that garden.
I signed up for fantasy last fall, knowing that it would be an important sign to Dan, of us getting back on track.  I failed to adjust my roster.  I am not even sure that I ever logged in.  I had wounds to watch, doctors to organize, and research to prod along.  I wasn’t able to focus on much beyond these occupations, and struggled to follow the Browns, (which is not really saying much, because most people struggle in following them.) 

Seasons change.  Cleveland teams lose.  Surgeries are scheduled.  Cancer is gratefully averted. 
Dan put in another garden this summer, one that we were seldom home to tend, but our 85 pound “puppy” was most helpful with.  It was an epic failure. 

So, in good faith, I tried fantasy again this fall.   I have been distracted, recovering from surgery and getting things pulled together on the home front.  The Browns, in week TWO, trade Trent Richardson, who was heralded as our best player.  Clevelanders despair, and begin to burn all manner of things brown and orange.  Sigh…

The other difficulty in my ability to focus on the Big Steaks League is that I am pretty active in another fantasy.   This is the ‘Big Stakes League.’  Many of the cities are the same, but the teams are a bit different.  Minnesota doesn’t field the Vikings; I get news from the Mayo Clinic.  Los Angeles is the City of Hope.  New York's powerhouse is Sloan Kettering.  Say ‘Boston,’ and I think of Dana Farber, not Tom Brady.  The Tennessee franchise at St. Jude has great promise . It is always worth seeing what Houston is putting out there, because MD Anderson is among the super bowl institutions on my news feed.  I have rather a lot of them, and am encouraged by the developments in their programs.
I have scouts from across the LFS world letting me know who is developing interesting theories, and promoting their exciting ideas.  They will helpfully share what star players they have come across in their oncology travels.  Surgeons, oncologists, geneticists, studies, clinical trials, holistic medicine, all shared with the hope of helping one another with the myriad of needs that always seem to present.   I happen to know of a pretty terrific ‘offensive coordinator’ headed to Arizona.  Cleveland, by the way, has lots of promise in this league.

But the downside of all of this information is the reality that my new LFS friends, these oncological scouts, they are in this same conundrum.  There are fears, concerns, disappointments and a beautiful fighting spirit.  There is love.  I witness much struggle, which even digitally, is hard.

These struggles become my struggles.  And it all serves to remind me that while the Ramers are blessed in this moment, there are no guarantees.  I would very much love to be on the other side of scans, which are on 10/14, for the reassurance they offer me for a time. 

We have the wonderful distraction of ‘birthday season’ right now.  Three of our children have birthdays within 6 weeks of one another.  And I am certainly celebrating this.  I am working hard on not allowing scanxiety and fear to creep in, and taint the gift we have in our medical quiet.

So, on Sunday, the Cleveland Browns played the Minnesota Vikings, and won.  They had a rough 3rd quarter, but had some really promising plays with a 3rd string quarterback.  You never can tell.  It is only week four.  Perhaps I should try to check my roster. 

Saturday, September 14, 2013

HONY, Cancer and the Ivory Coast

I follow the HONY page on Facebook, which is fantastic.   A man walks the streets of NYC and takes photos of average people (and admittedly, in NYC, there is no shortage of ‘characters’) and asks them some questions.  He posts the brief interview, or a caption, and the picture. 
I enjoy it, because I love NYC, having spent much time there while my son Brent sought treatment at Memorial Sloan Kettering Cancer Center, but also because I believe that there is something very powerful in what Brandon does.  He finds terribly interesting, funny and touching stories out of the most unassuming people.  And I believe that he challenges people to look at those around them in a new light.   Everyone has a story, if we only stop to consider what it might be.

I have never seriously commented before, generally reading others responses and trying on the various perspectives, both of those featured in the photos, as well as that of the commenters.  Today, with the photo of a man who left his violent homeland on the Ivory Coast, seeking a better life here, I wrote the following:

Ann Ramer: I think that we do not understand what political stability offers us.  Political stability allows us the luxury of griping about our government, rather than fleeing it.  We are blessed here.

Ryan Pulito: Political stability? You mean when one group has a monopoly on the use of lethal force?

Ann Ramer:  I mean when we have orderly elections that result in the peaceful exchange of that "monopoly on the use of lethal force" In other countries, this is not consistently accomplished. And there are enumerable blessings that come with this fact within our country. I acknowledge that many things are not perfect. But, without this basic foundation, so much else becomes impossible, things we take for granted, enough to even complain about the imperfections.

I did not want to get on a soap box, long posting on someone else’s site, but I thought much more about this today and thought that I would share.  I have my own blog after all.

While I disagree with Ryan Pulito, I really do not want to get pulled into a pissing match with him.  The political contentiousness that we have in our country,  I also consider that to be a blessing, not experienced in many other countries.  While some despairingly say that we have never been so ‘divided’ in the US, and conversations certainly can become heated, they are combative conversations, not actual combat.  Talk to someone from Somalia, or Syria or many other places in the world, and they can explain the difference.
I have been thinking a lot today about those blessings that we are afforded.  One, interestingly enough, is Pediatric Cancer Research, which we strongly feel is grossly underfunded.  We are blessed with both the opportunity to complain about it, as well as the opportunity to do something about it, precisely because of the political stability we have in this country. 

How much money do you think is invested in cancer research in war-torn African countries?  How many research facilities exist there?  I imagine that there are not many, because building elementary schools and hospitals is a big enough challenge.  Survival, in the most immediate of terms, is the highest priority.  It has to be. 
And because of this, everything else falls away to a very distant second. Investment in such sophisticated things as genetics labs or cancer research facilities, ones that might easily be taken, or destroyed, seems very risky.  Investment in science, quite frankly, should be a low priority if you are more likely to die in violent political reprisals.  Someone wise once told me, "Battle the shark closest to the boat."  Cancer is clearly not their shark.
Our stability, and the long general experience that we have with peace within our borders (recognizing, and in no way diminishing, the occasional episodes of violence, such as 9/11), permits us to have investment in cancer research, facilities adequate for the task, and scientists and doctors educated enough to tackle these tough problems. We assume peace, because we have no memory of anything else.  We proceed and invest accordingly.    

It all starts with the foundation of political stability, a blessing that I do not take for granted.
With an absurdly rare genetic predisposition to all forms of cancer (Li-Fraumeni), and two children with cancer (and 3 different types between them), I maintain that we are lucky.  Lucky to live here.  Lucky to live now.  And lucky to have the opportunity to try to help researchers advance their understanding of cancer and of genetics. 

We are very blessed to have no bigger fish to fry, or sharks to battle, as others in the world do.  We do not worry about feeding our children, or about violence likely visiting our home. 
We do worry about cancer visiting our home. 

But we have the opportunity to do something about it, which, as I recognize, is its own blessing.

Monday, September 9, 2013

The ribbon, this month, is gold

September is pediatric cancer awareness month. 

Didn't know?  Don't feel bad.  I have two kids who have had 3 cancers between them, and I didn't know.  But then again, I am aware of pediatric cancer every day.  I don't need to set aside the thirty days in September to think about it.  We live with pediatric cancer like some hideous knickknack that we cannot ever part with.  I am grateful for the opportunity for this monstrosity to collect dust over the next 6 weeks, whereupon I hope to put it back on the shelf until after Christmas.  Very, very grateful.

But, as many of my friends either anticipate (or dread) the pulling out of the pink ribbons next month, this month's color is yellow. (Didn't know that either?  No worries!)  Dan made a fabulous banner on his facebook page, one that I only barely possess the technological wherewithal to steal.  But I did-so, take that technology!

Hollywood and our One Hip Wonder... 
Dan had posted something to the effect that we do not look at statistics, mostly because we have found no comfort in them, nor have we ever found that statistics have been relevant to our experience.  We absolutely never say the phrase "What are the odds?" in this house.  With only 400 people in the U.S. with our genetic disorder, well, lets just say we would prefer to take those odds to Vegas with a five dollar bet, and come home bazillionaires. 
However, there are some things that statistics can help illuminate.  Pediatric cancer is rare (unless you are a Ramer) According to the American Cancer Society, 11,630 children under the age of 15 will be diagnosed with cancer this year, making it less than 1% of all cancer diagnosis. But, while that may not seem like a lot of children affected in one year across the US, consider that one in 333 girls and one in 300 boys will develop cancer by the age of 20.   
While it is generally understood that every cancer is different, and even within "breast cancer," for example, that there are different subtypes each carrying their own treatment protocol and different prognosis, it is not generally understood that children's cancers behave differently than adult cancers.  Also, the considerations for children are vastly different because of their developing bodies, the effect of treatment on their bodies, as well as the length of time that they will live with the unfortunate damage of these toxic treatments. But, because of how rare pediatric cancer overall is, there is not much financial incentive to develop new drugs for kids.  They get the 'hand me down drugs' of the adult cancer world.  In 20 years, only one drug has been developed for kids with cancer.
I am not here to complain about the system, or to bash pharmaceutical companies, who are in the business of addressing the needs of the many, and yes, I do recognize, for profit.   Because loads of women get breast cancer, there is great need for new therapies, which is why there have been advances.  Honestly, I am very glad that there is not a more market driven incentive for pediatric cancer drugs.  I am not at all interested in more kids getting cancer.  Naturally.
But, that doesn't mean that I wouldn't like more advances, and much more research in pediatric cancer.  Dan and I feel passionately about research, and are hopeful about the collaboration of the Children's Oncology Group, which implements research protocols at hospitals across the country.  Because, while there are enough ladies in a city the size of Cleveland to make up a decent cohort for breast cancer research at either University Hospital or at the Cleveland Clinic, you have to consider that there are not enough children in one geographical area with osteosarcoma or even a more common cancer like leukemia (ALL), to make up a proper research group.  The COG helps coordinate research protocols for children, studying the efficacy of new drugs and treatments at institutions across the country, so that together, the children make one research group.
I was asked by a friend about how to best support pediatric cancer.  There are loads of charities, some of which help families directly (which I will talk about at another time) and some who have a mission statement dedicated to raising much needed pediatric research dollars. Not cracking on the American Cancer Society, National Cancer Institute, or the Leukemia and Lymphoma Society, but less than 4% of their money goes to pediatric research.  These are fine organizations but because their mission statements are much broader, the kids again are lost under the giant cancer umbrella.
If you were interested in supporting research on pediatric cancer, you could donate directly to an institution, one like Memorial Sloan Kettering Cancer Center, MD Anderson, or St. Jude's, earmarking your funds for a particular researcher, or research area, noting your interest in pediatrics. (This is akin to buying individual stocks)
If that seems like perhaps too much work, to establish which institution or researcher you would like to support, there are charities dedicated to supporting children's cancer research, where you get the most pediatric bang for your buck without sorting through researchers yourself.  (I like to think of them as the 'mutual fund' of pediatric research.)  Here are a few: 
Flashes of Hope                   
Kick It:For Children's Cancer
St. Baldrick's                        
Alex's Lemonade Stand       
We are personally associated with the sister charities Flashes of Hope and Kick It.  Last year, Flashes, whose goal is to photograph every child diagnosed with cancer, until every child is cured, raised $650,000 at the Big Shots and Little Stars event in Cleveland.  Lauren had the opportunity to walk the runway that evening and enjoyed herself immensely while helping that cause.  This year, our family's story will be featured at the event, in an effort to raise some more research dollars. 
Kick It, which was begun by Quinn Clarke, a boy diagnosed with rhabdomyosarcoma, began with the idea that children could raise money for pediatric cancer research by playing kickball, Quinn's favorite game.  It has expanded every year, and this year at my children's middle school alone, they raised $31,000 in the month of May.  This money, raised by children, was dedicated to metastatic osteosarcoma research in Brent's name.  Osteosarcoma, being an orphan disease, generally affecting teenage boys, is the redheaded stepchild of research, receiving very little attention or funds.  We are so grateful for those dollars being directed in such a personally meaningful way.
The CDC lists cancer as the 2nd leading cause of death of children, after accidents.  We are hoping to push that way down the list.  No child should ever develop cancer, and I have to believe that with the proper resources, there are bright minds that will eventually figure it all out.  We are working on helping to secure the resources for those bright minds, right now. 
Any help you would like to offer would be appreciated.
Here is something that I found on the Kick-it website written about both kids, Hollywood and Mayberry:

Wednesday, September 4, 2013

And my world goes 'round again....

So, how am I?  How was the surgery?  How is the recovery?  Is it what I expected?

I am just now writing after a week...that should be your first clue.

But, I suppose that I should begin with my expectations.  Based on my research, and advice from friends, I really didn't know what exactly to expect, because as we know in this house, all too well, "Everyone is all depends."  Some warned me to be prepared for 2 days to generally recover, some 2 weeks.   All, however, advised me to keep ahead of the pain with narcotics.  Okey dokey.

I sort of expected that I would feel pretty crappy over the weekend, and I was not disappointed.  I have had four children, and have bounced back well from each of these deliveries, so I thought that I would recover from this pretty quickly with this too.  I gave myself until Monday for drugs. 

Monday, I took less drugs, but as I got tired, and started feeling crappy, I took another Percocet and went to bed, which seemed like a sound decision.  I was still sore, but my incisions were looking good...the bruises had become green and yellow, a vast improvement over the black that they were. I knew that each day would be better. This part was pretty much to my expectations.

My concern though, was the headaches that I kept getting.  Over the weekend, I thought maybe I was getting a sinus infection. As the week began with the same headache, I became concerned that it was perhaps narcotic withdrawal. I should mention that despite the fact that this is more than the 10th surgery in 2 years in this household, we do not have a lot of experience with narcotics.  My kids just don't take them outside of the hospital setting. Hell, Brent hardly takes them outside of the OR anymore, tough cookie that he is.

My sister actually said to me in the hospital, "Don't try to be Brent...take the drugs!" Okey dokey.

But these screaming headaches, that Tylenol didn't begin to touch, this is not what Percocet was prescribed for.  By today, I called my OB's office, assured them that I had no concerns about infection, explained that my abdominal tenderness was improving, but inquired about the headaches.  I was hurting pretty bad.  Like an ice pick in the eyeball kind of bad.  I thought about the neck.

My choices per my OB were:

1. Go to the ER for evaluation. (ummm...I cannot drive yet because of that surgery thing last week, and I was fairly certain that I was not looking an aneurism, or brain tumor, although with LFS, weird things do happen.  For example, I personally know 2 different people who are left with half a pancreas.  TWO. How many do you know? With LFS, nothing is beyond the realm of possibility, and I would not presume to know the limits of Gods sense of irony with regard to our family.)

2.  I could wait 2 hours and then take 2 more Percocet, to try to knock out the headache completely, as though it were a migraine. Stay in the dark, keep it quiet.  I have never had migraines, but thought this might be hormone, or lack of hormone driven change.  Also a contender.

3. Or, I could try coffee.

Clouds part, the sun shines, angels sing in jubilation.

If my brain were firing on all synapses, I would have figured this out sooner.  I drink coffee every day. Truth be told, quite a bit of coffee.  I hadn't had but half a cup since last Thursday because my stomach is queasy, which coffee would aggravate. And, I keep taking drugs that make me only want to nap, because my head hurts so much.  You are noticing the vicious cycle too?

I brewed up a pot, took some Zofran, washed it down with a cup of Joe, and Bob's your uncle.  I feel like a million bucks.  It wasn't narcotic withdrawal, or surgery, but caffeine withdrawal that was kicking my butt.  Yes, I am done with the Percocet now.  :)

All of the questions I had to answer about vitamins, prior experience with anesthesia, health history, cancer...blah, blah...nothing about my caffeine intake, which is probably not medically relevant generally speaking.  But, I think that the last time I 'quit' coffee was when I was pregnant with Olivia.  She is 5.  Both she and coffee make my world go 'round.

So, the moral of the story, boys and girls, is that you should call your doc right away if things seem at all wonky.

And drink lots of coffee.