A moment of Thanks and the spirit of Giving

This is the week when the seasons blend a bit, a concept best illustrated by the still life in front of my neighbors house:  A giant pumpkin covered in snow.  This same snow will hopefully hide the fact that we have been derelict in gathering up our leaves.  Ehh, those leaves will still be patiently waiting for us in March… or May, depending upon the weather and our ability to get to it.

So, Thanksgiving was a week ago.  It is probably my favorite holiday in its simplicity and pureness.  You get together with your family, you count your blessings, you eat a really nice meal with people that you love and watch a comedy together, or maybe a bit of football. Perfect and complete!  I received an email from an old friend who wondered what our Thanksgiving answers would be to the age old question "What are you grateful for?"  More to the point, what am I not grateful for these days? 

My children show No Evidence of Disease, which is something that I will never, ever take for granted, with the understanding that we will always live in three month periods of grace.  But even better than simply dancing with NED,  Brent is making strides in PT, becoming stronger and more balanced.  I am trying to do the same, both literally and figuratively. 

We have had the good fortune to have met some incredible people over the past two and a half years.  I am obviously very grateful for the medical professionals that have helped us on this journey… they are far too numerous to count. 

But outside of the medical setting,  we have met others who have used their time and talents to help make it possible for us to get to this point, or certainly make it a bit easier.  For example, pilots from Angel Flight have frequently flown us to New York.  This gift of time and resources has made it possible for Dan to conserve his sick time, saving it for chemo and our various surgeries, while Brent and I traveled to NYC for follow up appointments. This generosity and kindness has mattered a great deal to our family and will never be forgotten.

We have benefitted from other charitable organizations.  I cannot adequately express how humbling, and touching it is to have complete strangers extend such courtesy and caring to my children.  At Ronald McDonald House, which offers discounted housing near to the hospital, volunteers will play games with the kids. Some companies sponsor dinners, and their employees will come in and prepare meals for the families who spend long hours in the hospital. 
 

The Make a Wish program provided welcome distraction for Brent while on bed rest, as he fantasized about what he might wish for.  When he anticipated another long stint in a NYC hospital, he used his wish to open up his world virtually, with a laptop computer.  Absolutely everyone involved in Lauren's wish trip was incredibly kind and created an opportunity for her that we could never have, which brings tears just thinking about it.   All of this was possible with the donation of airline miles, of volunteers time, and of financial contributions by companies and individuals, none of whom know us personally.  Amazing.

Kick It and Flashes of Hope help us in a larger sense, as potential beneficiaries of research that these organizations help to provide. But in a more direct way, our children feel empowered through these charities, by helping to raise awareness, as well as much needed research dollars. 

The stylists and the photographers that volunteer with Flashes of Hope donate their time at the hospital and have an enormous impact.  They help children to feel special and capture moments of beauty, tenderness and love.  While the photos are black and white, the experience is a bold splash of color in what can be an otherwise grey hospital existence.  It is a remarkable thing that they do, and it makes a difference for children with cancer on multiple levels. We were once again touched by people who we did not know, directly helping our family

I have met scientists who dedicate their efforts to understanding cancer and genetics.  I am grateful for their curiosity and for the dogged determination that such investigation requires. Research is methodical and thus, very slow to bear fruit.  The patience required would likely disqualify me from such pursuit.

On a more personal level, our friends have been exceptionally understanding of how flaky we can be.  I have made plans, and abruptly cancelled more times than I can say.  We have failed to attend weddings and other important events for people that matter a great deal to us.  It is a journey of long suffering, and patience, being a friend to the Ramers  And we have been blessed with some amazing, long suffering friendships.

I count all of these blessings like a bountiful treasure, reminding myself of how fortunate we are.  This week, I have also had several reminders of how difficult life can be.

A faraway mutant friend messaged me as she travelled to a military hospital in Hawaii.  Her daughter, married to a serviceman, was diagnosed with breast cancer and was having a double mastectomy this week.  Her other daughter recently had two brain surgeries and she travels back to the mainland next week to manage the chemo and radiation schedule that they are still devising for her. A third LFS positive daughter, had cancer while pregnant, as did the baby. It reads like fiction, but this is LFS reality. My heart goes out to Joann Million, as nothing about what she is doing is easy. 

I thought about what I might do to be helpful. I actually have a dear friend in Hawaii that knows Tripler Hospital all too well.  However, this is because Jen is currently getting treatment there for metastatic breast cancer and is hardly in a position to help.  The Mallory's have four beautiful mutant children, which can only be a constant worry and scheduling nightmare, medical and otherwise, but a blessing nonetheless.  I very much would like to be in Hawaii, and not because it is paradise, as I teasingly refer to it. 

I learned of the passing of Jacob Tholl, a father of 5, after a 19 day struggle following an electrical accident at work. My heart is heavy as I think about how this family's holidays are so different than what they had anticipated. 

My friend lost her father after a long battle with Alzheimer's this week. While the holidays are supposed to be joyful, they can be difficult as well. My prayers are with all of these people this holiday season, the juxtaposition of struggle in its various forms against the backdrop of Christmas and tinsel.  It is hard sometimes. 

I finally managed to work out the scans for the kids.  We do not intend to spend time with doctors until January 6th. I am trying to relax, and to enjoy our Christmas without an immediate concern about cancer or major surgery hovering over it.  For the past two years, that worry hung out with the angel atop the tree, also gazing down on us, but with a far less benevolent look.  It is hard to shake that feeling that a shoe might drop, having experienced a tornado in a shoe factory. 
 

 

As I saw someone cynically point out, only in America do we gather around the table in November to express thanks for all that we have, and exactly 24 hours later learn that some people have been trampled to death in an effort to get more.  Makes you shake your head.

But also in America, the spirit of thanks bleeds into the spirit of giving.  And while everyone speaks a different love language, I believe that this time of year gives witness to a conversation that is dominated by love.

When we offer the gift of our talent, like the little drummer boy, wonderful, beautiful things begin to happen. Everyone has a talent, some sort of gift to offer: the hairdressers at the hospital, photographers, pilots, those skilled at cooking or baking, something as simple as taking the time to read to a child, or to visit with a veteran, singing in the streets if you have such inclination...the spirit of giving does not need to be commercially driven, and does not, most thankfully require money. 

It is giving of yourself. 

Once you reflect upon your blessings, think about how you might turn and transform these gifts, in order to help others.  It might be financial, it might be a service, it might be kind words. Because it is not what we have in this life that is important, but what we do with what we have been given.  I feel like we Ramers have been given so much.

I met with a hospital administrator this week who said to me, "As much as we accomplish, I learn how much more we need to do for our patients."  Rather than being overwhelmed by this notion, he was inspired.  I seek to follow this example, and to do as much as I can, with what we have been given.

And to do it joyfully, compassionately and wrapped up in love.



Should you want to help the Million family that I mentioned above with travel and medical expenses, there is a link below:  

https://www.giveforward.com/fundraiser/yf23/help-the-million-s-fight-li-fraymeni-syndrome?fb_ref=1364692&fb_source=message

The Mallory family accepts help here: http://helpinghandsforthemallorys.blogspot.com/

And finally, donations may be sent to help Jacob Tholl's family here:
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=PQFK3TDSBSN4S

 

Counting up the October blessings

I have had a busy month. I generally accept whatever lands in my lap, be it screwed up genetics or the kindness of strangers (or of loved ones.) While I do go out and make some things happen in this life, lately, I have been guided by what comes my way.   A lot has been put in my path recently.

As I look it over, it has been overwhelmingly positive. 

We did Lauren's Make a Wish.  Our trip to California was a huge blessing, and Hollywood couldn't have had a better experience. I am so amazed by the kindness of strangers.  My faith in humanity, if it had faltered at all, was renewed by the generosity of so many toward my children.  Having endured two solid years of 'medical nonsense,' as I euphemistically refer to this nightmare, I was glad to be together, outside of a medical facility, and for us to just have some fun as a family.  I was very grateful to not have to plan anything.  I feel lucky beyond measure.

I went to Boston last weekend to a genetics conference, which enabled me to meet some online friends.  I would try to write about what this was like emotionally, but I am afraid that I couldn't describe it any better than my dear friend Jen Mallory already has.  So, I won't even try to, rather just direct you to her beautifully written blog: 

http://lilykaymonkey.blogspot.com/2013/10/sisterhood-of-travelling-mutants.html

There was way more laughter than should be allowed...and hideously inappropriate cancer humor.  I am a firm believer in the notion of  'whatever gets you through.'  These ladies definitely are 'getting through.' I should mention that a song/chant of "I heard a little rumor, heard that you have a tumor, you have to have some humor, can't be a doom and gloomer" probably should not be what you lead with, approaching a newly diagnosed cancer patient.  However, this group is not standard, lets just say.

Further example of non-standard, when asked how many malignancies she had had, one mutant friend had difficulty answering, because she didn't consider melanoma a "real cancer." I think that we settled on five for her, but there was some debate, and also some beer.  So don't hold me to that number.

If the mutant convention was enjoyable, it was also enlightening. I met some researchers, and learned about the things that they are studying.  I am grateful for their work, and for the fact that we will gather together, researchers and subjects alike, every year now.

While some of the presentations were very "number-y,' there were encouraging things to be found in nearly every report.  My personal favorite was a researcher out of Utah, who serendipitously learned that elephants and whales, despite their much larger size and increased number of cells, oddly, most surprisingly, have a low rate of cancer.  There is almost no cancer among elephants.  He investigated and it was discovered that this is because elephants have not one pair of p53 genes, but 20 pairs.  20!!!  When I shared this with Lauren, she asked if she might borrow some elephant DNA, and giggled enthusiastically.  I would absolutely get her transfused with pachyderm blood, if I thought it would help.  It is coming, or something of the like, though, and I can feel it. 

It was birthday season, and birthdays are joyful days, particularly in our house where we do not take them for granted.  Cannot take them for granted.  The oldest three kids all have birthdays within 6 weeks of one another, and we have had our fair share of cake.  I keep saying that I feel that good things are coming our way, without any real justification for the feeling.  Out of the blue, Dan's dad offers not just his former car, but his pride and joy, to Alex.  On his 16th birthday.  Yes, we could never have done that for him. 

While Alex is understandably excited about this, I recognize that it is a gift to me as well.  He will not only be able to get himself to soccer practice and school once he gets his license, but will be able to help me get the other kids thither and yon...if I ever get it together enough to organize after school activities beyond physical therapy for any of them. Sigh...I will get there.

Upon our return from our Make a Wish trip to California, we did scans.  They were generally good, as I reported out.  There was one node to follow up on this week.  And I had slipped in the dermatology 'once over' this week as well, one that was supposed to happen over the summer, but had been pushed to the bottom of the priority list.  This is understandable, given that we had two New York surgeries to contend with.

So, when I returned from Boston, we had dermatology for the kids, which was not completely straightforward and will require several follow up visits. Sigh... Thursday, Brent had his follow up ultrasound for the concerning lymph node, which initially showed that it had grown.  Not a fan of this.  After dropping him off at school, I went to a friends house, to have coffee and catch up.  As I prattled on and on about my worries that afternoon, I fielded calls from the hospital.  Judy is a beautiful, dear friend with the patience of Job, sitting there as I sorted through the various hospital issues on my cell phone. Eventually, the CT was cancelled and it was finally determined that we are not looking at lymphoma.

"You are a mom.  I don't imagine that you ever stop worrying, knowing that everything can be cancer. I don't know how you do it." 

I explained it like this:  Lauren had headaches all week, a symptom of a virus that has been freely shared in my house.  Because she just had scans, I was not at all worried.  It was the only reason.  Usually, scans are on a single day, marked by mounting anxiety, which we try to mitigate, followed by emotional release with the hospital phone call.  Big worry, then giant relief and celebration when we get the all clear.  And peace, and confidence (oh, except for that time when they called about Christmas brain surgery).  The scans, which are stressful, are the cover charge for any ability to relax. Ever.  This time, there were follow ups...and so the worry drags out a bit.

The good glow of clear scans lasts about 2 1/2 months.  At the end of the day, we have been granted this blessing.  So, I will run with this.  There are good things coming our way.  Looking this over, I have no idea why I ever doubted it.  I am grateful for the further confirmation this week.

Brent and I leave in the morning for NYC, armed with some oncologic reassurances, looking for orthopedic encouragement.  We will again be relying on the kindness of strangers, taking an Angel Flight from Cleveland.

Good things are indeed coming our way.  The blessings from all sides keep landing in my path.

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.

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.’

Going to New York

I went to sleep last night, listening to the sound of a steady rain and the feel of the summer air coming through the window.  I woke to the rustling of the birds, a chickadee trill, the stirrings of the waking forest.  Then came the suburban sounds...a neighbors dog barking a friendly greeting, a car passing the house. This was followed by the more domestic sounds as Cinder jumps up onto the girls bed.  They murmur at first, then quietly talk and giggle together down the hall.  I listen to the sound of Dan's breathing as he sleeps next to me.  All distinctly the sounds of this place, of these people.  Of home.  In the stillness, I soak it all in and know that it is beautiful, and a blessing.  

I get up to start the coffee, put the breakfast in the oven, and finish the preparations for our departure.  All the while, I wonder what it will be like when we return.  When will we return?  My mental calendar officially ends on Thursday, a phenomenon that I privately call "scan day syndrome."  I find that the uncertainty that the future holds, while familiar, is something I am starting to get a bit anxious about again, mostly because I am no longer so terribly busy organizing things. It is upon us now, with nothing left to buffer the space.

I had a date with Lauren yesterday.  When we first told her about having Li-Fraumeni Syndrome and the scans and screening that she, Brent (and likely I) would have to do in order to find cancer early, I assured her that while we had to do hard, unpleasant things, we would do something special as well...like go to a movie or get our nails done, as a special treat to make up for it.  In the year and a half since I made that promise, the only special treat she got for doing scans... was brain surgery.  I am not exactly stellar as a parent in this regard.

She is amazingly patient, this daughter of mine.  And uncomplaining, mature beyond her years.  But, I don't want to push my luck.  And I really wanted have a date with her, to touch base uninterrupted, and spend time seeing how she really is, before I ditch her again.  I ditched her just weeks after that 'special treat' brain surgery that I mentioned...for Brent to have his first surgery in New York, thus avoiding amputation.  We were gone nearly 2 months. I am heading there again, this time knowing now that it will be a long time. 

We chat about the next several weeks as she gets her pedicure, so grown up.  Even though she is only 10, I ask her input about how she feels about scans...wait for me to return, or go with someone else?  We talk about oncology camp, and how much fun that will be, even without Brent...she is outgoing and confident.  I have no worries about her, but I think I will email to confirm which familiar faces will be there.  I know that Ceci, her nurse, will be there, and she will look out for her. We are so fortunate in this.

She selects my polish color, a bold pink.  I would never have picked this color, but I tell her that it would be a splash of Hollywood in the generally bland pallate of Sloan Kettering.  It would remind me of her, and that she would be with me.  Lauren really likes this.  We decide to do this again, and make it our quarterly date.  I feel like she is going to be fine.

Olivia will be fine as well.  We have prepared, talked about the plan.   We will all talk on the computer.  She will come visit in a few weeks to her 'birthday hospital' and we will have a date... All hurt of separation was forgiven with the revelation that New York City has a playground, and my promise to her that I will take her to the playground when she visits.  She can wear my perfume and smell like me, if she misses me.   That is all she wants.  It is simple when you are 5.  She is a pretty happy kid.

Alex will be busy with his sisters, and no doubt socializing as teenagers are prone to do.  He will enjoy visiting with my sister who is going to spend time at the house while Dan is away. We have neighbors who have kindly volunteered to take him to swim team.  If he is active, he is fine. He will be pretty active.

Leaving is still hard, but after having a nice breakfast together, it is time.  We go.  The lilacs are about finished blooming.

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.

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I pick up the drive through the mountains of Pennsylvania, which is 300 brutal miles of nothingness, while Dan dozes and Brent is watching a movie.  We have the strangest weather pattern, and seem to be skirting the edge of a front, because we have rain, and dark November-feeling clouds, but we frequently open up to blue and sunshine.  

I see a rainbow, which makes me happy, thinking about a friend in Hawaii, who frequently talks about them.  I have never been to Hawaii, but I suspect that rainbows are more common there with the more frequent rains.  I see another rainbow, a partial one, seeming to fall from a cloud.  It is almost a stylized rainbow, cartoon like.  I am amazed, delighted.  

Every turn brings another rainbow...to the right...right in front of us....double rainbow... To the left....interrupted rainbow...  They are everywhere, a frenzy of rainbows, for five solid hours.  As we approach NYC, I am positively giggling, and Dan and Brent are annoyed with me for my constant exclamations, because I just cannot help myself.  Dan said that we were driving through a rainbow factory...I like to think of it as a rainbow escort, wrapped up in promise and reassurance.  I finally said that the only thing that would turn off this parade of rainbows was the sun setting.

And as we breeze through the Lincoln Tunnel, with no wait, the reflection of the sunset on the clouds over the city is gorgeous.  Traffic is light, relatively speaking and we make the drive across Manhattan with ease.  As I pull up to Ronald McDonald House, someone else pulls out, leaving street parking for us right in front, which is the equivalent of finding a $100 bill on the sidewalk, because we will not have to move it to the garage until Thursday.  I feel giddy and reassured as we check in.

The travel here was easy, and I am hopeful that the rest of it will be blessed as well, full of encouragement, beauty, promise and hope.  

The timing of 'eventually' is perfect

They say that there is no such thing as coincidence.   I believe this.  I truly believe that there is a reason for everything.  And sometimes, it is not the things that happen, but the timing of those things that gives me goose bumps.

My son Brent was diagnosed with Osteosarcoma on his right pelvis nearly two years ago, and after 15 weeks of chemo, he had his entire right pelvis removed in NYC.  It was a giant surgery (18 hours) to remove a giant tumor. We were very fortunate to have found this surgeon, because he was able to reconstruct Brent's hip using donor bone, and save his leg.  (We are so grateful for the donor family as well)  There were 2 follow up surgeries back then, during the nearly two months that we were in New York, before we returned home to Ohio to finish another 15 weeks of punishing chemo.  The delays involved in the second half of chemo carried this process to nearly a year.

But, at the end of this year, my son was on the road to recovery.  He began physical therapy.  His marrow recovered.  He returned to school.  None of this was easy, but we were all happy to have active battle behind us.  There were still an ungodly number of visits to the hospital for scans, labs, PT, specialists... and at Christmas, a wound on his hip that simply would not heal sent us packing for New York again...a surgery whereby a muscle was moved from his abdomen over the donor bone, to help provide a better blood supply to the allograft and promote healing.

And he healed. It seemed to be a success, until last week's routine x-ray showed that the bone is disintegrating. Infection or cancer was the question of the day...because the cause of this deterioration dictated our choices.  If it were caused by cancer's return, there would be no choice. We would have to amputate and he would be on a very hard road of amped up chemo.

If it were infection, there might be some choice.  I prayed hard for infection, because my blood ran cold at the thought of cancer, both due to the orthopedic requirements as well as everything else that this implies.  Actually, amputation would be the least of our worries.  I am very glad to be able to put those thoughts aside for some time. May they remain there for all time.

We always knew that the donor bone would eventually need to be replaced.  'Eventually' is a very theoretical time, until you are looking at it face to face.  I am grateful that I am not smelling cancer's foul breath in this version of 'eventually.'

I would never have scheduled this, setting time aside for it.  But here we are.  And it will be ok.

Eventually, we will need to replace our roof...it is expensive and a very unsexy way to invest in your house, as I say. If you drop that kind of cash in your kitchen for example, you would have a party and invite your friends over to take a gander at your new cabinets when it was done.  There would be wine, and it would be worth the aggravation.  Which is why people ever embark upon such a construction project to begin with...one so inconvenient and disruptive, but with a big payout.

Most people, if they think about their roof at all, look at it and say "Eventually we will need to replace that."  But if it isn't leaking, or worrisome in some other way, you wait another year.  We have been in our home for 8 years...not sure how old the roof was when we bought it. I am grateful that we do not need to replace it this year. I hope to be grateful next year as well.  I hope to sell this house with the gratitude of many, many years of never replacing our roof.  If the eventuality of replacing the roof never came to me, I would be quite satisfied.

But, should we discover a leak, we knew that this was a possibility...a probability, in fact.  So, we call our contractor, and get busy.  Repair, or replace? 

I hope that the weather is dry, because we are doing a full tear off, exposing the rafters on this one. There are plans to rebuild though. We are thankful for the rebuild.  So very thankful.



Brent is happy, because he can finish the school year and enjoy all of the activities associated with the Kick-It fundraiser for pediatric cancer research that his school does every May.  He has been to a bake sale, a car wash, teacher dunk tank, a soccer scrimmage (boys vs. girls--girls won!) and next week has more events set up by middle school children.  If they make their goal again, they will have raised a total of $100,000 in four years, only working in the month of May. 

While there is some adult help, this is achieved mostly the effort and organization of children.  One of Brent's friends set up a website (heck, I couldn't do that) and a calendar of events.  There were scads of kids washing cars and baking cupcakes.  They are using their time and talent to make a difference.  They are using their collective numbers, with every little bit advancing the common goal.  It is a powerful lesson for these children, and one that I was impressed by, even before we were so personally invested in the cause.

I am grateful that Brent can participate in these things.  The timing of this surgery allows him to finish school, which is so important to him, and to attend 'Kick Bald' on Monday.  He challenged Lauren to raise $250 for the privilege of shaving his head in honor of kids in treatment, which has been a source of much teasing and fun between the siblings.  (I do not need to tell you how differently I felt about this as we worried about Brent's pathology last week, thinking he might soon be a child in treatment) 

Lauren baked up a storm, and made her goal...and then some.  I am so proud of her for thinking and planning.  She is grateful for the generosity of the donors...because while she makes a mean brownie, she recognizes that the charity was what was being supported. It will be a fun event, watching Lauren shave Brent's head at the school.  There is a sense of solidarity in the baldness.  Last year, when Brent had no hair, it was touching to see so many of his classmates sporting a shiny dome in his honor.  We are glad to be honoring other children this year, showing support in a visible way. 

We are looking forward to a time when baldness and cancer are not associated with children...or anyone for that matter.



Brent will be doing his Make a Wish next weekend. This is a wonderful organization that provides wishes for children with life threatening conditions.  Brent has dreamed for nearly a year and a half about what he would wish for, which has been a wonderful distraction from the many challenges that he has faced.  Many of his wish ideas involved sand or water, or a combination of both, which does not mix well with an open wound.  He wanted to wait until he healed, so that he could do this sort of wish. He waited, patiently most times. Eventually, we thought, he would heal and be able to do it.

But 'eventually' became far too theoretical for him last week.  He faces weeks in the hospital this summer and he knows that this surgery is not a sure thing.  He wanted to move forward with another wish.  He is going on a "shopping spree, " which mostly involves getting a computer.  He would like to learn how to design apps (?!?)  and feels that a laptop would be a good distraction while he is in the hospital.  He knows what this is like being isolated that way, and is using his wish, again, to make that difficult time better.


As I have been planning for this trip, I am struck with how different this is from the last time we removed his hip:

• There is no cancer to worry about, or chemo beckoning.  I will not be frantic about delays.  There will likely be delays.  I will be calm.
• Brent will be emotionally replenished and prepared.
• We know going in that it will be at least 4-5 weeks.  We can plan a visit with the kids in the middle of this because there are not restrictions for cold and flu. 
• The kids are out of school, so keeping things rolling here is simpler.  Alex is 15, and because he is home for the summer, can help with his sisters. 
• There are things that have fallen into place for us, like the fact that the chief of surgery from Bologna Italy, was recently picked up by MSKCC and put on staff...he has successfully done the surgery that Brent requires 12 times.  I am comforted by this addition.
• Dr. Healey, because he saw us just before his trip, has been consulting with the brightest in Europe about Brent's case.  We benefit from their experience and opinions, without needing a passport.
• In case I failed to emphasize it enough, we have no oncology pressure cooker.  I cannot say what a difference this will make going in. 

This series of surgeries is by no means a slam dunk.  It will be a long process and fraught with risk.  But there are things that I am encouraged by. Things that I am comforted by. Many things that make the challenge more manageable.  The timing of this eventually, is part of that comfort.

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.

Keeping up with the Jolies...or the Joneses

After hearing what we have to do, people often say that they feel that their worries or problems are not worthy of mention. The Ramers have it way worse than they do.

I was thinking about this today as I drove home from dropping the kids off at school and Olivia was still sort of waking up, so not actively talking my ear off as she customarily does.  Without having each American flag along the route pointed out to me, I quietly said my prayers and counted my blessings, as is my habit in such rare moments. And I thought about this notion of comparing our lives to that of others. 

I remember once, shortly after we moved here, Brent went to play with a friend who lived in another neighborhood.  When he returned, he exclaimed that they had an enormous house: beautiful and so big, that he got a little lost at one point.  Would we be buying a house like that someday?

I told him that I had no intention of moving for quite some time.  Our home was perfect for our family, with room for my mom, who has since moved in with us.  We have a wonderful neighborhood and live in a fantastic school district. I pointed out that there would always be someone who had a bigger house.  There would always be those who made more money.  We cannot measure our worth on this scale.  You cannot gauge your happiness in things, or in comparative terms.

I think that this idea translates beyond material things, actually.  I think you cannot find happiness comparing your life to others, your problems, your blessings…any of it.

I wrote recently about how I felt that Angelina Jolie might help bring some understanding of genetic predispositions to the general public, which then might translate to a better understanding of LFS…a place we could start our explanation from, without going all the way to the beginning.  (This often results in looks of confusion, disbelief, or best yet, a glazed over, vacant stare.) Given her giant celebrity status, she could bring attention to genetics and cancer, the way that Michael J Fox brought a public awareness and appreciation of the challenges of Parkinson’s disease.

It was interesting to hear from my LFS friends, and my friends that are breast cancer survivors (and for the record, there is some overlap here).  I was surprised at how aggravated some were with this whole business.  To me, it was as simple as someone famous, taking a strong preventative stance and providing some good PR, for lack of a better term, in sharing her personal story about cancer and giving some attention to genetic predisposition syndromes.

I suppose that because I seldom listen to the radio and never turn on the news, I probably missed a large portion of the ignorance out there (confirming the wisdom in keeping my TV off). So, I can understand the frustration of my friends with every idiot who failed to understand Angelina Jolie’s decision, or of what breast cancer brings. And further, by the fact that they felt compelled to confirm their ignorance by opening their mouth or commenting on the internet, denouncing her decision, one that most folks in this position happen to agree with.

But even if we didn’t agree, it is her body, her health, her decision…not public domain.  That, to me, seems pretty obvious.  And I could easily understand how difficult it might be to listen to such comments, and want to defend against such nonsense…maybe in violent frustration.

But what really surprised me was the reaction of some to the facts of BRCA, and Jolie’s decision to have surgery, thus nearly eliminating her risk.  Apparently, this was received with much public support, lots of “brave” and “courageous” accolades.  I personally do not have a problem with these adjectives, but some breast cancer survivors found this objectionable, which I found curious, until I listened a bit more.

I believe it is the opportunities that Jolie has been afforded that makes it difficult for some to drape her in laurel leaves as a ‘champion.’  Because she certainly has blessings in this life:  Financial independence such that she can hire help with laundry and kids; a platform from which to speak and a voice that people pay attention to; access to the very best doctors and the money to pay them without needing to  duke it out with an insurance company; genetic knowledge in advance of a diagnosis, one that afforded her the opportunity to chose a mastectomy, and careful reconstruction, when others had the same procedure forced upon them with a diagnosis, further insult to follow in the form of a chemo and/or a radiation chaser; Angelina’s ability to overcome her ‘genetic liability,’ (the way those with LFS cannot) and likely avoid cancer altogether. 

Let’s just say that there were strong feelings about all the gushing and hoopla among some LFS friends as well.  LFS is like playing in the major leagues of cancer.  Jolie just got called up and these vets were not necessarily impressed with the rookie.  She hasn't faced a fastball, the screwball...the curve. Does she have any endurance?  She hasn't got the experience, and some out there are making her MVP.

I was bewildered. 

While Jolie is genetically cursed with a mutation (BRCA) that she was wise to both respect and address as she has done, those same genetics blessed her with extraordinary beauty, which is partly why we are still talking about this…she is in the movies and we are Americans.  Forgive me for stating the obvious. 

And that twist sort of hacks some regular people off, especially those who have the yin of crappy genetics, without that yang of that exceptional beauty…which has led to her status, her platform, her financial ease, all of which are enviable.

But if I had had cancer, had this surgery thrust upon me, fought my way through chemo, through radiation, learned of my devastating genetic diagnosis which cannot be surgically mitigated, and struggled to care for my children while fighting with the insurance company like a superhero, or madman…I might not have warm and fuzzy feelings about this Johnny-come-lately who had done none of this, and who people pay attention to because of her beauty.  I can see how that would be irritating.

Well, now I get it.

From that perspective, she might not seem so much 'brave,' as logical, pragmatic and resourceful…using whatever is available to her.  And she has much available.  I do not personally begrudge her the resources.  Believe me when I say that I use whatever I can find to get through.  I count my blessings.  I know that I have many.

But ultimately, I think that it comes down to understanding the fact that there will always be those better off than you, and there will always be those worse off.  Using a dear friend’s description, LFS is 'the mother of all cancer syndromes.'   And thus, genetically, we are the top of the heap, cancer-wise.  We are the most exclusive club, but the sorority that no one rushes. No one has greater cancer risk than this small, scattered group of families from all over the world.

They struggle, anonymously for the most part, for generations, losing significant portions of their family.  They want help.  They want solutions.  They want a voice.  They want research dollars.  They want to be heard.  Mostly, they desperately want a cure. 

I am a newbie, without any sort of LFS perspective, or heavy oncological baggage in my family.  I lost my father to kidney cancer, although I have been assured that this was not LFS related.  It counts toward my cancer fear factor, this loss.  But it is not in the same league, not even close, to the stories of my friends, who have lost so many…children, siblings, cousins, parents, aunts, uncles… 

I have a different perspective.  A different story.  We all do.

I am grateful that Angelina Jolie shared her story.  She still garners my sympathy and admiration, because she seems to be a pretty private person when it comes to her family.  In sharing this, she has helped others, and I view it as a measure of generosity, this giving of her privacy, a treasure that she seems to hold dear.  The same anonymity that others find despair in, might be exactly what she craved as she went through her procedures, skulking around and hiding from the paparazzi.  You have to take the bad with the good, and we all have different challenges. 

I try not to compare my life, or situation to others.  This is simply my story.  And I try to do the best with what I have been given, and relate compassionately to those who cross my path.  I look with much gratitude to those who have helped me, which includes the insight and support from a beautiful group of strong women from all over the world, each rivaling any character that Angelina Jolie might play on the silver screen.  They are bad-ass in real life and deserve equal time, even if you do not know them and they never happen to grace the cover of People Magazine.

Just saying.