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 3^rd 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. 

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.

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                             http://www.flashesofhope.org/

Kick It:For Children's Cancer        http://www.kick-it.org/

St. Baldrick's                                  http://www.stbaldricks.org/

Alex's Lemonade Stand                 http://www.alexslemonade.org/

 

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:

http://www.cleveland.com/brecksville/index.ssf/2013/06/brecksville-broadview_heights_262.html

 

 

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 different...it 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 amputation...at 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. 




I

Making room for the good: Olivia's first day of school

It was raining. 

Thundering, actually, which is the only thing that Olivia fears, a fact that I had dutifully noted on the “all about me form” that I filled out for her kindergarten teacher. 

But today was the first day of school for my youngest daughter, and the excitement in her as she bounded down the stairs before 7am, negated all anxiety about the thunder.  She dressed and ate breakfast, brushed her teeth and I helped her with her hair.  She put her lunch in her backpack and put on the sign that Kindergarteners wear around their neck on the bus to help direct them like the precious package that they in fact are. (There is a return address label on her, incidentally) Then, we waited nearly an hour for the time when the bus was due to arrive, with varying degrees of patience.

Olivia announced that she would not, of course, bring her special green blanket. 

She loves an umbrella, but dislikes thunder.  Today, she was not even a little troubled by the thunder boomers.  We grabbed an umbrella and walked to the bus stop where she sang, rather loudly “The sun will come out, tomorrow!”  A neighbor closed her window as she belted out the finale.  Probably because it is chilly today.

Then the bus rumbled down the street, and she was gone.

 

 

It is raining.

But I have a cup of coffee and a quiet moment before I continue to clean out the basement, discarding things that are broken and passing along toys that are no longer used.  I have neither had the time nor the inclination to evaluate the detritus of our lives.  The answer for nearly two years, when asked about an item has been “put it down in the basement and I will deal with it later.”  Well, later is now. 

I am happy to report that Brent has been cleared from Infectious Disease.  Neither he, nor Lauren, will return to hospital until mid October for scans, a break not experienced here in nearly two years.  So, I have both the time and the inclination now, to deal with those mundane, everyday things.  It is a luxury that I have not enjoyed, and somehow, I am looking forward to it.

There is something nostalgic about parting with items that are worn, and no longer useful.  There is a longing in a way, for the time past, when life was maybe simpler, or had more possibilities.  Despite this, I have always been pretty good about finding new homes for things that we no longer use, clothing we have outgrown.  And, I have always felt lighter after such purges.  I never have regrets, and feel that the process makes room for more useful things that are suitable for our current lives. 

You cannot embrace the present, if your hands are clinging to the past.

It is still raining, but harder.

Olivia is off on her new adventure, excited about the possibility of making new friends.  While there is part of me that regrets the details of her preschool years, it being a picture far different from the one that I would have painted for her, she is a happy child.  And I am grateful for this.  There is part of me that worries about the future, the thunder, and her fear. (As a very loud clap of thunder crashes outside my window, making me jump!)  She will be fine.

So, today I will make room for the good things in our current life by passing along the relics of our former one.  I am sure that there will be some conflicting emotions in this, sorting through our past, leaving open spaces, spaces which initially feel empty, but make room for our future. 

And on Thursday, I will continue to do the same sort of thing, but on a more personal level.  I will have surgery, ironically enough, exactly two years to the day of Brent’s diagnosis.  I feel that it is a fitting end to this chapter in our lives.  The kids are cancer free, and I will have finished everything that I can for my geneticist. 

I am making room for the good that is to come.  Because, as Olivia so musically declared, "The sun will come out Tomorrow!"

Today, I will pour myself another cup of coffee and dive in.  I will wait to hear of Livvy's new and exciting experience when the bus returns this afternoon, regardless of the weather.  Arms open to her, and to our future.

Half my life

My husband is pretty terrific.  I say all the time that I definitely “married up.”  We had our anniversary earlier this month, and marked 18 years.  I was not feeling well that night, so we postponed having a date.  Most things that we have postponed over the past two years have simply been tabled, so I am really glad that we had the opportunity to go out, just the two of us, for the evening last night.

Generally, we would have gone out to dinner at a nice restaurant, or tried to get away for the weekend.  With four children, it is a challenge to take a trip together.  Getting away has been a challenge for the last 15 years, but more so now than ever because the kid’s activities and other considerations are so much greater.

Dan decided to go ‘old school’ and take me back to where it all began.  We met in college and so, he took me back to Kent.   Anticipating  feeling old, and perhaps a little out of place, Dan said that he was fairly sure that he would not get into a fight, but if some young punk asked if he was at the May 4^th shooting in 1970, all bets were off.  I might have mentioned that I married Dan because he makes me laugh.

There is much about the campus that has changed, as you might imagine.  It is much prettier than I remember.  There are buildings that have been constructed in the past 20 years, which are an asset to the university.  Likely, there are students there who cannot conceive of a time when they weren’t there, filling up those spaces that were empty when Dan and I were young. 

They reworked the plaza in front of the student center (I remember it being a really horrible space) and when we were there, they had a free concert-big band.  We sat, enjoyed the music and the lovely weather and had the opportunity to talk, which was much better than the wine that they served.  It was really wonderful.

We walked the campus, recalling the beginnings of our life together.  It was different back then, and much, much simpler.  What we had imagined for our lives was not this, certainly, because who would dream this up?  (I joke that if I were ever to write a book about it, they might shelve it among the fiction titles) 

We went into town, and stopped at a couple of our old haunts, those that are still in business. At ‘The Loft,’ we walked in and I was shocked at how nothing had changed.  Sitting at the bar, I was bewildered at how we were transported back twenty years.  We used to go there to have three dollar pizza and beer on a cheap date.   Dan teased that he feared ordering one now, because the crowd might go silent, music off, all eyes turned on him….before they burst into laughter, because maybe they haven’t served pizza in a decade.  He ordered two beers instead.

Looking around, just taken with it all, I exclaimed, “Nothing has changed!”

Putting down the two drafts, the bartender says, “That will be seven dollars.”

Dan turned to me, laughing.  Some things had changed.

 

We stopped for another drink at a place that was spatially familiar, but the name was off.  We couldn’t remember what it had been called.  I asked the bartender if he knew what it had been called before it was Dominick’s.  Eyes bugging, he said that it was called the Town Tavern, like 22 years ago.  Then, shaking his head, he said that he was aging himself more than us.  Yeah, we are all getting old.

We stopped to get something to eat at Rays.  We talked about our future, and the medical things that we need to finish up in the next couple of weeks:  The very last hoops to jump through before we are on ‘LFS maintenance,’ as I like to call the fishing expedition that we do every 3 months.  I am anxious to finish these last things, and be cleared for a while.  Dan and I never talked about multiple geneticists in Rays before, pretty certain of that. 

Our lives have changed over the years, and like the university campus, the empty spaces have been filled. We have built this life and built our family which, admittedly, has not always been easy. However, no large project advances without a problem.  As an architect, Dan has taken particular pride in those that are 'on time and under budget."  I am pretty sure that we are neither of those at this point.  I do feel that a good product results from creative solutions.  I am grateful for Dan's creativity in our family.

I do not imagine that I will ever end up in academia as I had once planned.  Of our plans, I often say “We plan, and God laughs.”  With Dan next to me, at least God isn’t the only one laughing, which makes the hard parts and the detours easier to deal with. 

What I can say with certainty though, it that all these years later, and despite all of the challenges, this life is better, and far more beautiful than the one I started with.  I have now spent half my life with Dan.  I credit him with the improvement.

Picking Good Doctors

Conversations with friends recently reminded me of this piece that I wrote nearly 6 months ago.  Interesting, as we have very recently bid Dr. Getty goodbye, and we are relying again on Dr. Gingo.  The sentiments are constant, however.

We have been blessed in this life with good doctors.   Some we looked for.  Some simply fell into our path.   The vast majority of folks in our medical journey have been terrific, although, as in life, there will always be some people that rub you the wrong way. 

How do you pick a good doctor? 

When I first moved back to Ohio, Dan and I were looking to start our family and I needed an OB.  I was young and healthy, and had no primary care doctor to ask for a referral.  So, I asked around at the restaurant where I worked, and was referred to a gentleman who was very nice, by a coworker, who incidentally, had no children. 

Dan and I were excited about starting our family, and as a first time mother, I did exactly what I was told, came to my appointments as scheduled.  It was all going along swimmingly.

After one episode of false labor (first time mom, you don’t know what to expect or what “real” labor is), my OB had me in for another ‘weigh-and-measure’ appointment.  He checked me, and I was 3.5 cm.   Nervous, he recommended that I be admitted and induced.   Okey-dokey. 

So, petocin (a drug which I now have evil feelings about) was ordered up.  Progress was rapidly achieved, but I honestly feel that this man had dinner plans that he did not want to be late for.  Because, he personally turned up the petocin, at a point when I had no breaks whatsoever between contractions. (My extensive subsequent experience in hospitals has shown that doctors do not in fact operate IV pumps, never touching them, except on very rare occasion, to silence them)    Epidural (too late), and Alex was born in 3 ½ hours, making me officially a mom.  He was nearly dropped (Dan still talks about this man’s very small hands, understanding that Alex was a slippery little bugger, but suggested that my next OB have a catcher’s mitt)  While I was thrilled to be a mom, I thought that maybe another doctor might make the next experience a bit better.

So, I needed to find another doctor.  My sister had 4 children, so I used her OB for Brent’s delivery.  I felt that I could trust her experience, and her opinion.  I loved this doctor.  Brent was brought into this world sans petocin (per my request which was both heard, and honored) in an hour and a half.  He was born in time to watch a World Series game with Dan, who teasingly complains to this day about how rough it was for him to stand so long, and that no one offered to give him a foot massage.   (Ahem…)   Dr. El-Dabh was terrific.

But our insurance then changed, and to go out of network for another delivery with him as my doctor was cost prohibitive.  I really considered it though.  Looking again…

I went to a smallish Christmas party with a printout of my OB options.  I asked the ladies there to cross off any docs that they did not like (be warned if you try this, there are passionate feelings among women about such things) and to circle the good docs. I asked questions about the circled docs.  Wait time? (OB offices are prone to occasional delays, given the unpredictable nature of birthing, but some are notoriously over booked, and I had 2 toddlers to consider)  Efficient staff?  Does the doc take time with you or rush through?  Confidence in him?

Among those circled I found Dr. Anthony Gingo, who has been an angel whispering in my ear, for over 10 years now.  I have been grateful ever since, for that last minute Christmas inspiration, grabbing the list and asking ladies that I didn’t even know so well at the time, their opinion on a pretty personal matter. 

I cannot exaggerate the positive impact that this man has had on my family and the trust that I place in him.  His guidance has served me well each and every time it has been offered.  I credit him with Lauren’s life, both on the day she was born (cord around her neck) as well as when she was sick the first time, alerting me of the need to “find answers” which helped me push a little, when we were initially told by another doctor to just ‘come back in 6 months’ for a re-evaluation. As it turned out, she had a rare unpredictable cancer, which would not have been discovered for another 6 months, with who knows what results, except for Dr. Gingo’s words banging around in my head.

I am grateful for his care of me, for respecting my wishes in difficult situations, of his attention to my family and his consideration of my daughter’s future.  He has been invaluable for thinking ahead and preparing us for possibilities we would rather not consider and hopefully preventing catastrophes, unlikely for the average patient, but worthy of very serious consideration for both Lauren and for me.  I have hardly been the routine or average patient.  He is an exceptional doctor, so I feel that we are a good match.  I am so grateful for his guidance.

When your child has cancer, it is not like you can bring a list to a Christmas party and expect that anyone can help you, or offer an opinion.  (When your child has cancer, you haven’t time for socializing so it is just as well)  You land where you land, shell shocked and trusting that doctors in general, and the oncologists in particular, are much smarter than you are, and that they can fix it. But they are human, fallible and sometimes just not a good fit, despite their exemplary medical qualifications.

Sprinkled across our medical story are a few doctors that I cannot say offered unreasonable opinions, or came to conclusions that were unsound, but they were just not a good fit for us.  This was not simply because they raised concerns or possibilities that we did not like, or arrived with recommendations that we found disagreeable (nearly all doctors we spoke with had big problems to report, and unpleasant recommendations) There was almost always a manner whereby these few doctors communicated with us, or failed to communicate, that we found very difficult. 

So, the euphemism in our family is “not our favorite” for docs that are not a good fit for us.  Only occasionally, have they irritated us enough to garner a private nickname, like Dr. Doom-and-Gloom, or Dr. Chicken Little (They sky was always falling for that one).  But these people have earned the respect of the title of “Dr.” even if the surname is slightly altered to more accurately reflect the quirk of personality that rubs us the wrong way. And, these have always been nicknames that help remind Dan and I (or very recently, our children) that they offer one possibility, have their own perspective, and are entirely human.  The ‘Dr.’ part is to remind ourselves that they are truly trying to look out for us using their experience and education, despite how it feels.

I contrast this handful of doctors who focused perhaps too narrowly on one aspect of a problem or failed to communicate altogether, with the vast majority of docs who have meshed well with us, been compassionate and thoughtful in the way that they spoke to us while presenting the unfortunate result, recommendation or information that they were required to report. The best doctors took the time to explain their thoughts and concerns.  They also listened to our concerns and answered our questions.

I think of the affection that Brent has for Dr. Getty, a man who explained to him why it was prudent to amputate his leg, and how challenge ridden a reconstruction of the hip would be.  He led with “I have options for you, and I am sorry to say, unfortunately, you aren’t going to like any of them.”  Honest, but compassionate. I believe that the most important thing he did, was to strongly encourage us to seek other opinions, preparing us for those conversations with other doctors, and ensuring that we were best informed about perhaps the most significant decision of Brent’s cancer journey.  He has been unwavering in his support of our decision, despite the obvious restrictions in the ways that he can help us at this point. 

Perhaps because all of our options were bad, the negative consequences of our choice (the persistent concern and worry about this hip construction) are more easily tolerated.  But somehow, I don’t think that Getty is an “I told you so” kind of guy.  He is far too humble, and respectful of both his patient, who, by definition is in a very bad situation, and of the disease, which is unpredictable, in spite of his vast experience with it. His part in our journey might not be direct, having never actually performed surgery on Brent, but could hardly be considered tangential. 

Besides, he is just a really great guy.

This humility is something that I respect in a doctor (coupled, of course, with extensive medical knowledge).  One of Brent’s oncologist said to me once, that he doesn’t cure, that he doesn’t have the answers.  He merely assists and guides.  There is so much mystery, so much uncertainty.  And he volunteered that he couldn’t say what makes the difference from one outcome to another. This might make someone else crazy and think “why am I here if you don’t really have answers?” But for me, I think that this acknowledges the limitations of scientific understanding, and recognizes the exceedingly complex nature of human beings.  And, it may have been the first that I heard a doctor openly refer to the philosophical and spiritual aspects of our being human and its influence on medicine, which I think has its place along with science. 

But that is just me, and maybe someone else might develop a nickname for these same doctors, to demonstrate that they were “not a fit” for their family.  

We have been blessed with so many ‘fits.’