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.’

Busier than Chuck Norris doing nothing

I have been very busy as we prepare to go to New York.  I lived south of the Mason-Dixon for a spell, and there are many colorful expressions that I could insert here.  However, as most of them begin with "busier than a one armed or one legged," I am understandably reluctant to use them. I will forgo such comparisons. Brent thought this was wise.

In conversation with the boys about this, I suggested that they come up with a "Busier than Chuck Norris..." joke. I asked them what sort of activity would keep Chuck Norris busy.

Brent replied instantly, hardly looking up from his game. "Nothing.  Nothing keeps Chuck Norris busy, mom.  He is Chuck Norris!" Funny kid. 

So, I will just leave it simply: It is a hectic time of year as school winds down, and Brent and I plan to be gone for many weeks, which requires a great deal of preparation. 

But overall, it has been wonderful and good.  I thought that I would share Friday's caringbridge here, where it is probably more appropriate.

 

 

We Ramers have been busy, and blessed.  Since we have been back from New York, Brent has enjoyed a fantastic end of the school year. There were next to no medical trips (only one precautionary visit to the ER)  Brent has been in 'full on' kid mode, and loving it.

There were many visits with friends and a host of Kick-it events that Brent was able to go to and enjoy with his friends. (Car wash, bake sale, head shaving, Ramernation soccer scrimmage, teacher dunk tank, a car show, lemonade stand...I am sure that I am forgetting something else here that he did...)  I would say that this was a fun raiser, more than a fund raiser, except for how it all ended.

 

Yesterday was the last day of school and is historically the grand finale for the annual Kick-it event where the money is tallied and the total revealed. The kids had set a goal of raising $25,000 in the month of May.  They have done this the previous 3 years, amazingly enough.  When I checked in earlier this week, it seemed like it was going to be close.  But I am so proud of these children, because they surpassed their goal, and raised $31,500 for pediatric cancer, bringing the 4 year total to $108,000.  

Stunning.

I believe that the education that our children receive in Brecksville is exemplary.  I have never worried about whether my children would be academically prepared for college, which is a large part of the reason that we decided to move here.  Back in the day, I was a teacher, and I actually substituted in this school district.  I saw the lesson plans that the teachers left behind.  I was impressed with the academic expectations.

 

But beyond that, as a substitute, you are potentially at an extreme disadvantage, not knowing most of the students names, and traveling sporadically from building to building. However, I had high school students here remember me from earlier in the week, approach me in the hallway between classes, address my by name, and inquire of my current assignment...departing with a pleasant goodbye and "See you 6th period!"  Really. This happened all the time.

 

So when Dan and I were selecting a community, we were naturally interested in the schools.  I remembered the culture here as one of kindness, consideration and as I have since learned, extreme compassion.  

While the book stuff here is great, I feel more strongly about this atmosphere of compassion and action within the community, which the Kick It  campaign exemplifies.  With some guidance and encouragement from their teachers, particularly Maria Schneider (who is just incredible, btw) the kids come up with ideas, organize plans and execute them.  

In the process, they discover their collective power to affect good. Through many small efforts they learn that if they coordinate their energy to a common goal, they can accomplish great things and achieve truly meaningful results, evidenced by the impressive check forwarded to Kick It every May.

 

But this year, in surpassing their goal, Maria asked the founder of Kick It, if the funds raised might be directed in a way that would be meaningful in a more direct and tangible way to these kids, who are familiar with Brent's struggle.  Rather than the funds going to an unnamed pediatric cancer study, they are all being directed to research on metastatic osteosarcoma, in Brent's honor.

When she announced this at the rally yesterday, I wept.

Some talk of the damage that can be inflicted by bullying, that 'children can be so cruel.'  I have no doubt that this can be true.  

 

But this has never been our experience.  I would like to focus on the enormous capacity for kindness, compassion and coordinated positive action that our youth have demonstrated in a big way for four years in row now during the month of May.  And throughout the rest of the year, in somewhat quieter ways.

 

This is not something that will help them on their SAT or other standardized testing.  But this life lesson will carry with them and might be applied to other worthy causes that they feel passionately about.  We, along with the other families in Brecksville that have children struggling with cancer naturally feel passionately about pediatric  cancer research.  But the lesson applies to many things...to anything.

 

I walked through the hallway of a school for parent teacher night or some such thing once.  The dreams and goals of the kids displayed on the walls with colorful pictures seemed idealistic and lofty: End War, Solve Homelessness, Feed the World, Clean up the Earth, Cure Cancer.
 

Big, complicated problems, all absolutely worthy of the effort, but such that you almost don't know where to begin.  Most of us don't begin.

These kids rolled up their sleeves and got started with one that affects some of their own.  I am feeling more optimistic about the potential with regards to the rest of those dreams.  Makes me want to pass out the construction paper, crayons and glitter, because they are learning to create their own world, one that they would want to live in.

 

We leave Tuesday for MSKCC.  Brent will have surgery on Thursday, which will be a big surgery, and just the first.  While this is going to be hard, and we will be gone for a long time, we carry the support of this community with us, which has been so wonderful, and a blessing that I am very, very grateful for.

Much love, 

Ann

 

Only one problem, thank God

As I picked up my phone in the car yesterday, I saw the (212) area code, recognizing that Sloan Kettering was on the other end.  I answered, stomach dropping, and heard a familiar voice, Dr. Healey's nurse. The pathology was in, she said, and it was negative for malignancies.  She wanted to call me right away to put my mind at ease, which was an act of kindness that I will always remember with deep gratitude.

I could hardly speak, and only managed a tearful thumbs up to Lauren who sat next to me in a state of confusion, bordering on concern, as I blubbered incoherently.  Lauren has been with me before, when I fielded tough news.  She is an old soul, and mature far beyond her years. I am very grateful for the universal message that thumbs up provides, because I couldn't manage much else.

I immediately called Dan who was relieved beyond measure.  Then I called Brent, who gave an understated "woo-hoo" as though I said that we were having pizza for dinner. Really. He was more enthusiastic about hearing that I was taking Lauren for a date, than the fact that he didn't have cancer.  "You haven't had time together in a long time!  Enjoy!"

So, we went into the restaurant to have a date.  I was trying to see how she is doing with what Brent faces. I apparently will have to have another date with her, because while we had a joyful meal together, interrupted by many happy, relieved texts from friends and family, and my own emotional rollercoaster, I did not get a good gauge on where she is in all of this.

Lauren and Brent had cancer at the same time, which is long story for another post.  In short, she had a golf ball sized brain tumor removed here in Ohio only weeks before Brent had his entire right pelvis removed in New York. The abrupt change in his situation this week, including concern about his cancers return, and the likelihood of amputation, well, that is a bit much for any 10 year old to process. But, I wonder if she additionally worries about her own cancer status. It would be surprising if she didn't.

Brent is managing amazingly well with all that he faces.  He wants to focus on the good things the next few weeks will bring before surgery...the Kick-it for Cancer fundraising events that his school has every year to support pediatric cancer research, the end of school bonfire, his Make a Wish.  He says that he does not want to talk or think too much about surgery. I would worry about this, concerned that he is not preparing himself, but this is how he has always done things, focusing on the good that today offers and dealing with the difficulties when he must, regardless of the challenge: chemo, surgery, distant hospitalization...

In addition to checking in with Lauren and preparing Brent, we have the other kids to think about. Alex is a very physical, athletic kid.  He and Brent, only 2 years apart, have always been close.  They played soccer together and rough and tumbled outdoors their whole lives.  Over the last year and a half, Alex has struggled with the change in their relationship, in the ways that they can relate.  He wants to fix it, to fix Brent.  He wishes to return to how it was before cancer.  I wish I could do this as well, for both of my sons. 

Brent is happy for Alex and has a very generous spirit. I have never seen any jealousy or resentment from him about Alex's ability to continue along a path that isn't as physically restricted as his own. While Brent hasn't gone to but a couple of Alex's games, this is mostly because sitting so long is uncomfortable for him physically.  I think Brent will continue to adapt well emotionally, but this is going to be a very tough thing for Alex to come to terms with.  I recognize how strange that seems.

Olivia, well, I do not know what to do to prepare her. At 5, I think that this would best wait until we are much closer to surgery.  But I am at a loss at how to make all of this right for any of our kids when it is so difficult for us to wrap our own heads around.  I do not know exactly how to help them.  Even if there was a manual for raising kids, I doubt that there would be a chapter that covers this.

While I still feel the heavy weight of our limited orthopedic options for Brent, without the oncology bearing down on us, it doesn't seem quite so overwhelming.  It is unbelievably hard, but not soul crushing.  I will go with "not soul crushing," and be grateful.

Very, very grateful.

And try to find our way to the next step. As serious as the problem is, and as difficult the solutions, we know that we are blessed in a dozen different ways, starting with the clean pathology.

Brent had cried out in Dr. Healey's office that it wasn't fair, which really struck me.  This is a statement that he has made very, very rarely, in the course of this 21 month ordeal. (I believe only twice)  All of the chemo, all of the surgery, all of the rehab...and he has complained very little.  I think he recognizes that while it cancer is not fair, this is what is.  Fairness is immaterial, so why dwell on it?

So we try to focus on what we are given, rather than what we have lost.  What we are given, the things that we count among our blessings, might not occur to others.  It is probably a given that your children to not have cancer. I name this daily as a blessing, but likely take other things for granted.

We are all different.  We all have blessings, and challenges, each unique. I think that our happiness stems from where our focus lay. (lie? lays? lies?--I can never get that one right)  You understand what I am mean, crappy grammar aside. 

Not to be all rainbows and unicorns, but I am going to focus on what we have been given, as we move past the shock of all of this. Like Brent, I am not going to dwell on the immaterial, unchangeable facts, but pick a solution and march on.

That is my plan at least.

Walking in Manhattan

After starting the linens in the washing machine, I thought that I would let Brent sleep a bit longer at Ronald McDonald House. (One advantage of him finding sleep on the couch more comfortable than on the bed, is that I do not need to wake him to do the 'exit laundry'). I decided to return the wheelchair to Memorial Sloan Kettering that we borrowed after Brent's needle biopsy yesterday.  I threw my handbag into the empty wheelchair and set off, alone with my thoughts in the city.

This has been an emotional trip, and I am finally alone, without things that I actively need to do like when we were in the hospital.  There is anonymity in the city, especially one this large, and with the understanding that I do not know anyone here.  There is real temptation in screaming right there in the street...wailing to the heavens.  A plea for some mercy, a frustrated cry for insight, a bit of anger at God.  I think that it is ok to be angry with God once in a while.  I do not rage outwardly as I walk, but I am grieving.

My son Brent, who only a day or two ago (could that possibly be right?) expressed to me how he couldn't wait to be able to run again, how much he is looking forward to the freedom to play with Olivia in that physical way almost required of 5 year olds, will never be able to walk normally. We learned that he is in all likelihood, going to lose his leg, after a long year and a half of surgeries and rehab in an effort to save it.  

And that may not be the bad news.  We are now concerned about local relapse of his cancer.

For months, there has been starts and stops with physical therapy.  Concern and frustration nagged at me about the fact that we have not managed to establish a head of steam in his progress.  But, it seemed last week that we might have just turned a corner.  His wound was improving, and I was going to set up PT again for him, beginning tomorrow, upon our return to Ohio.  We turned a second corner here in New York however, when routine X-ray showed that the donor bone is dissolving.

I never saw that coming.

So now, the worry that I have had about infection for a year, has been transformed into my wish.  My fervent prayer is that we have been tamping down an infection for months, despite massive doses of antibiotics and antifungals, and that the infection has damaged this donor bone, degrading it to the point that it must be removed.  That is my new hope.

From an orthopedic perspective, the problem is severe, and the solutions are all unappealing.  But if the causative agent is infection, we have one sort of problem.  If it is cancer, we have much bigger challenges and more difficult "fixes."  

I walked, looking at the flower vendors, and food trucks setting up for the day. The constant movement of people, like a pulse, even in the early hour carried me along. I really love the city, for a country girl.

Along another line of thought, I spoke at length to my oldest son last night.  He, quite understandably, is struggling with this.  He offered up a string of ideas, solutions for this orthopedic problem that do not involve amputation.  "Couldn't you go with metal?  Could you use his fibula?..." He told me that he had loads of ideas, as he wrestled with the changes that Brent faces, that we face, as a family.

I explained to him that while it is not completely decided yet, amputation is what he should really be prepared for. I told him that Brent is not defined by his physical form.  But that this change, which is troubling to Alex, might serve as his own personal inspiration, especially if he has ideas.  Go into biomedical, and make the world better.

We all have hard things. It takes no effort to lie there, curled up in life and bewail our challenges.  Our job, I believe, is to turn those hard things into something good. 

I challenged Alex, that if he has ideas about how to fix this, he should write them down, explore them, find the problems that come with with the solutions (they are always there) and try to fix those problems too. If he feels passionately about this, he should do something about it, and try to help others.  I am trying to do that through my writing, using the hard things we have, and bringing good things to others, making it easier, in all hope.  

I drop off the wheelchair, having borrowed it overnight.  There is a family feeling about this, sort of like when I would take my parents car when I was a teenager.  The discharge nurse had encouraged us to borrow it (He had a needle biopsy only hours before, after all) shouting to the secretary at the desk as we left that we were taking it to RMH, feeling like like a sister of sorts.  Will I ever feel differently about this place, like when you step into your parents house after living on your own?  A bit of a guest, rather than like you belong there?  Should you knock?

I head back to RMH, up First Avenue.

A third line of thought, which I try to sort out...the people that have come into our lives.  I had shared with Brent that I believe that things happen for a reason, that there is a plan.  While God sometimes gives you hard things to do, he also sends you help along the way, guidance and support.  I see too many coincidences to think otherwise.  Lately, there have been people, who visit, and revisit my life in odd ways, at serendipitous times.  

Looking back, I sometimes understand what someone's purpose was in appearing at a particular time. But sometimes, I worry about the future when someone shows up.  I don't want the "help" that they might be offering, or the problems that they are best suited to assist me with. I fear what it might mean, and really wish that they would just go away.

For example, a doctor that has been particularly helpful to us in Ohio is looking for permanent position elsewhere, and unfortunately, has not secured anything as of yet.  He is extending his stay with oncology as a night hospitalist for another 6 months.  Until yesterday, I simply wished good things for him, and left it at that.  Now, that information carries a tinge of anxiety.  I do not want that sort of help, or those sorts of problems.  And I have a half dozen examples of this ilk to worry at me.

It is best not to look ahead in that way, I think. I remind myself that it is not all about me, or my family. And these sorts of things are not prophetic.  There are a multitude of purposes, and reasons, none easily seen or understood from this perspective. 

I have racked my brains, trying to figure out what all of the labs, and symptoms of the past 5 months add up to, in advance of the pathology which will take a week.  How would the CRP behave from infection, from cancer? But I am no doctor, and the doctors don't know.  We all wait.  I wait impatiently. Anxiously.  

I step into a coffee shop, my regular stop on this route. Brent and I were here only 2 days ago, grabbing a bite while people watching, and resting as the 5 block walk to Sloan was a lot for him to crutch. We didn't bring our own wheelchair to New York, and the thought had flitted through my head that day that perhaps I should arrange to return it, as we seldom use it anymore. Brent was looking forward to showing Dr. Healey how he could walk.  We had no idea how different that meeting would be from what we had imagined in that moment.

Brent is still sleeping when I return, an untroubled sleep. I put the linens in the dryer and suddenly it all washes over me.  I need to breathe.  And take one step.  One word.  One moment. One breath.  Then another of each.

I need to take the hard things and make them good.

We came here in solid clouds, that made the landing a leap of faith.  We leave in fog, which obscures the path right in front of us.  I am so grateful for the fact that we have an Angel Flight, so that I do not need to drive for 9 hours and focus on the immediate responsibilities of driving for that long, which are both too much and too little at the same time.  I miss my husband and my other children, and long to be all together.

We wait a week for pathology, to find out what we are doing.

We wait.