A less traveled road

I spent most of September and a warm October in the hospital with Lauren and Brent.  I would see large families visiting Rainbow Babies and Children's Hospital on the weekends, sometimes providing improbable visuals: Amish men with their wide brimmed hats and distinctive beards walking behind a group of Muslim girls in full black burka. Witnessing these unlikely neighbors reminded me that pediatric cancer recognizes no boundaries.

While there is great focus on disparity, discord and discrimination between cultures, cancer is the great unifier.  We parents, regardless of any other differences, desperately want the same thing for our children.  Within the cocooned isolation of the oncology unit, we hold on to each other and to hope. We may pray in varied ways, but each of us utters the identical prayer.  Please bring health to my child.

The world, as presented in the media is a clanging ugly noise, something that is piped in via the television found in the nutrition room.  I generally turn it off, preferring the quieter expressions of love and kindness that we experience every single day.

While writing this, lyrics from some other lifetime, were called to my mind.

We share the same biology 

Regardless of ideology 

Believe me when I say to you, 

I hope the Russians love their children too
-Sting

I enjoyed my occasional days at home when I could to get Olivia on the bus. Upon waking, Olivia would always roll over to sleepily greet the sunrise, declaring its beauty and promise.  This morning when I woke her for school, it was dark outside, and cold.  Her cheer and enthusiasm are blessedly unwavering.

We return to warmer climate next week. Brent will formally enter a clinical trial at MD Anderson in Houston for his relapsed AML, a research study that just began recruiting in mid August, only a month before we sought options there.

I picked Lauren up after a rare day without chemo, one that permitted her to attend class.  We chatted over lunch about our family and the notion that "to whom much is given, much is expected."  The Ramers have been given so much. While we have been given far too much cancer in my opinion, we are also loved and supported in ways I never could have imagined. Lauren and I agreed that we each have a talent, and we should use it in service to others.

My daughter is comfortable speaking publicly and uses her voice to help the adolescent cancer community. Brent, she pointed out, has knack for getting out of incredibly tight spots. His talent seems to be providing Proof of Concept to enterprising folks in medicine, like the surgeon who successfully grafted skin from Alex onto Brent last November.

While I cannot deny the truth in this, I would much prefer that he take up juggling.

I reminded Lauren that I have been following developments in immunotherapy for years.  Emily Whitehead was a name I knew long before Brent had leukemia.  Her success with Car-T had dramatically changed the treatment options in ALL.  Reading about her and the brilliant researchers at Children's Hospital of Philadelphia brought me hope. I thought that using the immune system could transform all of cancer treatments, particularly for folks with LFS because it does not rely on our defective P53 function, as chemotherapy and radiation do.  I even said back in 2015 when Brent first developed leukemia, knowing that Car-T was still limited to CD19 /ALL, that I would gladly stand in line if a CAR-T trial for AML were available.

We now find ourselves next in that line for an early phase I trial for CD-33 Car-T to treat his relapsed AML.

I wonder sometimes if I unknowingly made a bargain with God. I alternate in my responses.  Should I be grateful about this, terrified, or completely pissed off?  I always lean toward gratitude, but in the interest of honesty, have to reveal my conflicting emotions. Faith, I have always said, is hard.

Our home smells of wood smoke and spiced cider when we return. At Thanksgiving, for three consecutive years now, Brent will attempt something unproven.  His daring is fueled by a mix of desperation and courage. As his mother, I choose to focus on his courage and his grace.

I wish we were simply taking a less traveled road, but Brent consistently steps into the wilderness with a medical machete, cutting a path for others to follow.

We welcome your prayers, however you form them.


   

Carry on Baggage

The airplane was crowded.

Travel out of Newwark was complicated by a fire in the B terminal the night before and snowfall in the midwest.  I patiently worked my way through the plane, locating my seat by the window.  As I settled in and pulled out my book, the man next to me inquired if I often traveled on American Airlines.  He was looking for a way to plug in his phone.  My companion proved to be quite chatty, unusual in an age when most travelers bury themselves in their electronics. Maybe this interaction was fueled by desperation, stemming from his dead electronic.

My head was full, traveling last minute to surprise Gabby for her birthday.  Her friends had organized a dinner in the city after she met with Intervention Radiology at MSKCC, to map out her next biopsy. She battles stage 4 breast cancer and as a mutant, there was suspicion for lymphoma in addition to metastatic breast cancer. Double primary is a tough road, one that Brent has flirted with. It is a daunting path that other friends of mine have been on, and successfully navigated.  But it is sure nice to have company.  

The mutants came for me in January, when Brent first relapsed.  I am glad to be the friend who shows up for once.  So many of my relationships feel lopsided lately. I always seem to be the one needing support.  Cancer will do this I suppose, but within the mutant community, it somehow feels more balanced.

I tried to have a normal conversation with my fellow traveler, which takes cancer off of the table for a subject.  I found this to be more difficult than I imagined over the two hour flight.  I have not been in 'polite society' for some time.  Answering simple questions has become difficult, and speaking without mentioning cancer now boarders on dishonest.

What brings you to NYC?  "I was visiting a friend for her birthday."  This doesn't begin to explain how wonderful it was to surprise Gabby.  It doesn't address how much I needed to step away from the madness of pediatric hospital life, and pour out my soul to folks that really truly understand. It was a last minute decision which was only possible because my son's PET MRI and bone marrow biopsy were mostly clear.

Do you work?   No.  (My new answer will be:  "I am a project manager working with physicians, researchers and others within the medical industry."  I will be sure to mention that I do this work pro-bono)

Newark/La Guardia/JFK?  It was awkward to indicate that I usually fly into Teeterboro or White Plains (which are small, corporate airports) when I travel to NYC.  I had just indicated that I do not work.  Angel Flight is a wonderful and generous organization that provided our travel for Brent's care at Memorial Sloan Kettering Cancer Center. I was trying not to mention cancer.  I recognized that I was not making sense to this man.

We chatted almost exclusively about parenting, and my oldest son who is going off to college next year.  I became uncomfortably aware that increasingly, it sounded like I had a favorite child. "You have raised a son that you have reason to be proud of."  I am proud of all of my kids, but without mentioning cancer, half of them are really tough to talk about.

As we touched down in Chicago, I turned on my phone.  I saw a posting from a mutant friend who is in a clinical trial in Europe.  She has a similar tumor to the kind that Lauren has.  After being desperately ill last summer, spending over a week in a coma, my friend rallied and entered a clinical trial. She failed on her first one but entered a second trial. I read her happy news, that both of her brain tumors are shrinking.

I looked out the airplane window as we taxied and wept, not just for my friend, but for my daughter. I find comfort reading about new treatments which are more effective and less toxic, hoping to never need them. We are currently looking at a surgical trial for Lauren, using glowing tumor paint, derived from scorpion venom. For real.

They announced that our flight would be delayed for fifteen minutes more on the tarmac. Unable to contain myself any longer, I turned to my new friend Frank and shared the encouraging news from Europe, and in a thumbnail, how it relates to my other children.  As we finally parted ways in the terminal, I hugged this bewildered stranger, who promised to pray for my family.

At the end of the day, I suppose that if I am going to make sense to people at all, I will have to talk about cancer, even in polite company.  Like it or not, it has become part of who I am.

The colors of cancer

ROY G BIV  Doxorubicin, the red devil. Methotrexate yellow. Mitoxantrone blue. Colors and nicknames. These days, the chemotherapy colors are more familiar hues to us than the ones found in a Crayola box. We will also get to see Propofol this week, which is white and opaque.  But this isn't a chemotherapy agent.  It is a sedation drug, which is kind of fitting, when you think about it, a liquid like White Out, a primer that blots out everything.

I wake up not sure where am, or why I am there, even on the rare occasions that I find myself in my own bed.  Our situation changes so frequently.  In my sleeping hours, I wonder if I escape to an empty landscape.  I do not remember my dreams anymore.

Perhaps my lack of dreaming comes from my late night reading.  I looked over the consent forms for an investigational drug last night and considered the odds.  The problems that we currently have are certain.  The potential problems that we are signing on for are substantial.  We have arrived at a place where there is no standard of care. There are no obvious answers. Dan and I are required to make difficult choices for both of our children,  all of which carry significant consequences.

We have been doing this for years, but it somehow doesn't get any easier with practice.

I am writing, but not writing well or easily.  This leads me to believe that maybe I am dealing, but not dealing particularly well.  Perhaps though, it is just because we are so bloody busy.  And I am so tired.

Interrupted just now by rounds, I learned that the beat down has begun.  The anticipated dip in blood counts has commenced for my son.  These counts will continue to drop until we are required to transfuse, repeatedly.   Brent will be wide open for infection.  Knowing this, we will continue the Cookie Monster blue medicine for another two days.  And then we will add another drug, which will drive down his marrow even further.

Brent is currently doing very, very well,  I remind myself.  This is a big breadcrumb.

Pick your poison.  Brent joked that we literally did this ten days ago, when we met with a group of doctors and learned that his leukemia had infiltrated the lymph nodes. The disease has to be controlled before he can go to transplant, using the perfectly matched marrow that his brother Alex offers.  The menu had been filled with all sorts of unappetizing things.  Brent helped select his own poison, at fifteen.

Lauren will have surgery this week to deal with a grey area in her grey matter.  Dan and I had to decide with her, as a twelve year old, about how to manage the tumor that is slowly growing in her brain.  I looked over the series of black and white MRI images with her doctor and saw the changes.

There were no clear answers offered from the medical folk, and the nuanced opinions all required that we take the lead.  The Ramers decided to deal aggressively with this, having experience that suggests that nothing improves with the wait. We will wait only until Thursday, when we will have two rooms on the pediatric oncology floor.

It will be a busy week in cancerland.  I would love to vacation somewhere else, but the Ramers are together, at least.

My nephew just came to visit, a ray of sunshine on this drab day.  He is a reminder of the outside world.  Another breadcrumb.  Eric shared the wonderful things that he is learning.  His visit reminds me that this day is one to celebrate, because it is filled with love, with wonder, with joy.

Despite our burden, or perhaps because of it, all of our days are worth celebrating, because all of our days are clearly filled with love.  I really need to focus on this part, and put the technicolor cancer options behind me now.  Decisions made,  I must leave it in God's hands as we move forward.

We are always looking ahead.
We always welcome your prayers.

Parents: Buy a bike helmet and fund pediatric cancer

With our children, we experience love immeasurable and infinite.  Parents would go to the end of the earth for their kids, partially because we are charged with the responsibility as caregiver, but mostly because of this deep well of love and devotion.

I have been honored to share the responsibility of raising four children with Dan.  If I am honest, there are times I am overwhelmed with it lately.  I have often tried to explain what this 'adventure' has been like, one most people cannot begin to imagine.  I have left myself emotionally exposed and completely vulnerable, out of this love for our children.

Our pediatric cancer story would make anyone's hair curl.  I could share some of the details of our 6 cancer episodes to date, as I sit and write from a hospital room, and pull at your heart strings.  But I am not going to do that. I will talk of my children, and of yours, in abstract and practical terms, like commodities stripped of humanity and devoid of emotional attachment.

I will appeal to that practical, pragmatic part of your brain.  The part of us that is self interested and self serving, although we hate to acknowledge it.

If you have children, you likely went to some effort to have them, either investing nine months to grow them on your own, or considerable time and expense to adopt.   Regardless of how it came to be, if you have children, putting aside the temper tantrums of the toddler, and moments of moodiness in the teenager,  you likely want to keep them.  And keep them in good working order.

I recognize that the challenges vary greatly with each particular child.  The time may be coming where humans will be able to pick their make and model, getting the features and accessories of their choosing. However, this ethical debate is not relevant to our current situation. Today, we are stuck with what we have.  Do not in any way infer that I have buyer's regret, because I most assuredly do not.  I would gently remind you that we are keeping our emotions out of this discussion.

Kids have things go wrong with them.  I have looked over these statistics, and the most frequently occurring thing that happens to kids, is that they accidentally break.  Parents recognize this, and tend to be pretty careful with them.  We drive them in cars with special seats and we let them ride bikes, but with helmets protecting their lil noggins.  We consider them precious cargo.

But still, despite these efforts, the number one thing to go wrong with young humans, is accidental injury. This statistic remains constant (depending upon how you define young-ha!) until age 45, when cancer beats out accidents as the number one killer.  Either we become more careful as we age, or our genetics start to catch up with us.

But back to the true kids, because they stop being our responsibility, long before 45.  We are being pragmatic about this, remember? The second highest cause of death for children overall is cancer, only dropping below homicide and suicide, which temporarily displaces it between ages 15 and 35.  So, essentially, if your child doesn't suffer an accident, you should, in practical terms, turn your attention to cancer.

The American Childhood Cancer Organization estimates are that one in 285 children will be diagnosed with cancer before the age of 20.  Consider this number when you attend the next reverse raffle for your kid's baseball team.  Pediatric cancer is kind of like that reverse raffle.

Cancer has achieved the inauspicious title of the leading cause of death by disease among children, only because of the fantastic progress that has been made in infectious disease. The success of the immunization program has so reduced the fear associated with polio and other diseases which had historically ripped through the population, that most parents do not even understand what contracting these infections would involve. Consequently, some parents elect not to immunize their children.  It would seem that there is such a thing as 'too much success.'  Amnesia begets apathy.

My child, incidentally, will be highly susceptible to these nearly eradicated diseases that now pop up on occasion, until we are able to re-immunize him after bone marrow transplant, perhaps in a year.  We are absolutely forced to rely on the "herd immunity" that the parents who opt out of immunizations count on to protect their child.  But I return to pragmatism, because I cannot control this trend.  I could easily get distracted by fear and frustration, which are emotions, and thus neither helpful nor relevant.

So, back to cancer. As the foremost disease that kills children, cancer is grossly underfunded with only around 4% of tax research dollars at NCI being dedicated to pediatric studies.  While it is true that childhood cancer is rare in the general population (The Ramers are single handedly skewing the numbers, or so it would seem) the things that could be gleaned from studying a pediatric genetic landscape, one uncluttered by a lifetime of environmental damage and mutations, is significant. Lessons learned in the pediatric setting can translate to adults, but this seldom happens in the reverse. It would behoove adults, in pure self interest, to fund pediatric cancer research to better understand the process of adult malignancies.

Furthermore, there are scandalous amounts of money invested in adult cancer "success" drugs which extend the lives of those with advanced prostate cancer by only a couple of months, as one example. As a researcher pointed out to me earlier this week, even though everyone still dies of metastatic disease in the study, the advertisement trumpets the extension of life by mere months at an exorbitant cost, as a huge success.  Clearly, there is demand for these additional months, and thus, a market for these sorts of drugs. This is why pharmaceutical companies produce them.  I have no quibble with this.

However, with our tax dollars, we should be more discerning and forward thinking.  We should be pouring more of our resources into saving our new crop of humans and let the market drive the development of these other drugs.  As the cancer rate among children increases, as it currently is, it becomes more important to find less toxic therapies, and understand the underlying mechanisms of pediatric cancer.

The smart money for parents in protecting their young investment (after purchasing a car seat, helmet, and hopefully getting their kids vaccinated) is to invest in pediatric cancer research and urge congress to increase the allocation of funds for pediatric studies at NCI. 

Perception matters

Brent began treatment Monday.  I said 'treatment,' rather than 'chemo.'  I have thought about this quite a bit, and it really shouldn't matter what I call it.


But it does.


Brent, as we were heading down to the hospital corrected me about Interferon.  "It isn't chemo, Mom."


Chemo, in his world, means poison...and neutropenia, and hair loss and weeklong stints in the hospital, nosebleeds and vomiting. With Interferon, we are making daily trips to the outpatient clinic after he finishes his classes at school for infusions of something that is a bit different.  And to Brent, this distinction matters. Kind of a lot.


I wasn't in a great position to argue with him, as I explained, because I hadn't done much in the way of research on this.  Brent found this positively shocking, because I am always reading up on the latest research that comes my way. 


I explained that my research on interferon was limited to listening to the opinion of all of the doctors that we had contacted and consulted.  They were all in agreement about this course of treatment for him. I had learned about other treatments of course, but these were for more advanced disease than he has.  These other therapies are not appropriate for Brent, sort of the equivalent of dropping a bomb on a city that has a couple of criminals in it.  We would learn more about Interferon when we went in.


So, when we arrived, I asked Dr. Stearns to clarify for us. "Is Interferon considered chemotherapy or immunotherapy?"


He smiled with a twinkle in his eye, and responded "Yes."  Because it is a bit of both, killing melanoma cells as well as causing an immune response to be mounted against them.  Well, then.


I always aspire for clarity.  But for Brent, calling this chemo is problematic.  We settled on Chemo-Lite, given that it will be much easier than the very harsh treatment that he received for osteosarcoma.  If calling Interferon 'treatment' rather than chemo makes this more palatable to Brent, well, 'treatment' it is.


While the semantics do not change the truth of what we are doing, it does change his perception of it.  His focus is on the ways that this is far easier than what he has already done, rather than on the ways that this is hard.  I do not want to in any way minimize what he is doing, but I can certainly embrace his philosophical position.  This is doable. This is manageable.


Most importantly, this is what Brent must do to get better, the microscopic cancer mop up. Call it whatever you like.


And I have always said “Whatever gets you through.”  

Big Shots and Little Stars

We were honored to participate in a terrific event on Tuesday.  Flashes of Hope held their annual “Big Shots and Little Stars” show with support of the Cleveland Cavaliers and Lake Erie Monsters at the Quicken Loan Arena.  The theme was James Bond and there were over 1400 people at the event which benefited Flashes of Hope and the Children’s Tumor Foundation.

Allison Clarke, who founded both Flashes of Hope and Kick It, feels passionately about pediatric cancer.  Her son Quinn, was diagnosed with rhabdomyosarcoma at age 2.  Like Brent, Quinn has had a tough road.  He also, incidentally, is missing half of his pelvis. 

Allison, who learned of our troubles through mutual friends, reached out to us early in Brent’s diagnosis, relating in a very personal way to what our journey was like.  She took plenty of time on the phone to provide a sympathetic ear to me when I had few around me who could really appreciate the challenges that we have faced.  Later, she contacted doctors that she knew, as we looked for better surgical options for Brent.  I will always be grateful for her efforts and for her kindness.

The circumstances that might cause some people live in anger have served as Allison’s motivation.  She has turned something truly horrible into something that will make a difference for others. When Quinn was recovering from pelvic surgery over 10 years ago, his roommate, a two year old, succumbed to his disease.  Quinn, then only four years old, expressed how sad he was to lose his friend and regretted that there were no photos of him.

That moment, that singular comment from her son, was a seed of inspiration planted in her mind.  Allison went on to form the non-profit Flashes of Hope.  The mission of this charity is twofold:  To photograph every child with cancer until every child is cured.  Professional photographers, hairstylists and makeup artists volunteer their time and talent, going to hospitals, cancer clinics and oncology camps.  Children, many in the midst of treatment, are offered the opportunity to have beautiful photos taken with siblings, or parents or even sometimes, a beloved doctor or nurse.  

This is an amazingly beautiful gift. While a photo with your child, particularly during the uncertainly of treatment is meaningful, harrowed parents are not likely to have the time, the energy, or the thought, to go to a photographer during their “off time.”  In the hospital, particularly, it is a blessing to have these kind people come and capture moments of tenderness, of joy, of love.

I learned at Tuesday’s event that the beautiful black and white photos have been processed and printed at White House Custom Colour in Minneapolis.  CEO Mike Hanline refused the request to discount the cost of the photos, insisting instead upon donating every proof and enlargement.  As Flashes of Hope has grown, now photographing 7,000 children per year, this gentleman donates over 150,000 beautiful prints annually.  Stunning.

I am brought to tears thinking about the gift that these folks bring to families in the midst of great struggle.  The photos can serve as a reminder of how difficult the journey has been and can be a celebration of what a child has overcome.  Or sadly, they might be the last photos that a family has of their child, capturing a moment filled with dignity and love, in the midst of battle. 

This first part of Flashes of Hope’s mission, which is active in over 55 cities, taps into the time and talent of many generous people to positively impact families in a direct way.  This is a worthy cause, all on its own.  But the second part of the mission is to support pediatric cancer research. 

Tuesday’s event took my breath away.  Through the support of Dan Gilbert, owner of the Cavs, and over 1,400 Clevelanders, $950,000 was raised for pediatric cancer research.  I was really struck by something that I read in the program: 

“We had no business getting a meeting with Dan Gilbert in 2009.  With just three paid staff members, we held the “Big Shots and Little Stars” runway event in a mall.  We asked Dan if the Cavs players could participate in the show, which we hoped could be held at the arena. To our amazement, he said yes.  He helped take the event to the next level and the level after that!”

 

Lauren, Dan Gilbert, Alex and Brent

I am astonished at the generosity of strangers and the ability that some like Allison have, to harness that generosity in order to accomplish great things.  I am inspired by how boldly she asked, and how enthusiastic the support has been, both of particular individuals, as well as the community at large.  The advances in understanding and eventually conquering pediatric cancer cannot come too soon.  With this kind of support, research can move forward faster. I am so grateful for it all.

Part of why I have been talking about this organization is because Allison called me while we were in NYC over the summer and asked if we would be willing to share our story at the event.  We agreed, happy to help this organization in any way that we could. They interviewed us a couple of months ago and put together a video which they showed at the event:

http://vimeo.com/80040863

It was an honor to be associated with an organization whose goals are so worthy, and who partners with the Children’s Oncology Group, Alex’s Lemonade Stand, The Children’s Tumor Foundation, Jeff Gordon Children’s Foundation, and Bear Necessities Pediatric Cancer Foundation.  It was a wonderful evening for our family.  Should you be interested in donating time, talent, or money to Flashes of Hope, I have included the link to their website below.

http://flashesofhope.org/about/mission

Our current 'needs': cheap therapy, clean socks and a cryogenic freezer.

I haven’t been writing much.

Perhaps I should rephrase that.  I have been writing a whole bunch, but I haven’t been writing for me…  writing as therapy, which is what this really is, in case you haven’t figured it out yet.  I write to sort my thoughts, to direct my actions, to ground me, to explain to others what this crazy cancer journey is like, and, in all hopes, to help others who find themselves in similar straits.  Mostly, though, if I get thoughts out of my head and put them down in words…well, I can better manage it all.

This is not to say that I am ‘not managing’, exactly, but I do have a whole lot swimming about in my noggin these days.  I have a whole lot on my ‘to do’ list. And I have a whole lot more that I want to add to it, which even I can recognize, would be pretty foolish and hugely unproductive at this point. 

I have been reading.  I have been meeting with researchers.  I am excited by the things that I am learning.  I am astounded at what they have figured out and hopeful about what we do not yet know, but might soon discover.  The rapid exchange of information and the exponential increase in the rate of learning are most encouraging to me.   We have long established that patience is not my strongest suit, so this is all a very good thing. 

I have long been dreaming of having a cryogenic freezer in my basement, in case you are looking for Christmas gift ideas.  Hunting down tumor and tissue samples, beating institutional bureaucracy and sending these samples to researchers are all pretty time consuming.  If I had our various tumors and tissues stored right here in the convenience of my own basement, I am thinking that I could just call Fed Ex and be done with it.   Yes, the fantasies run a bit different these days.  And the Ramers are something of a freak show.

I have also been sorting through some domestic things, most of which is not nearly as interesting as what is coming out of the scientific community, but hugely necessary, in a ‘we need clean socks’ sort of way.  I really am grateful for the opportunity to devote my time in such a manner.  The luxury of waking up in my own bed, with all of my children sleeping down the hall is not something that I take for granted.  Also, we have really enjoyed doing some things together as a family, realigning and reconnecting.

Clean socks, well, we shouldn’t take those for granted in this house either.

In many ways, I am still trying to ‘get it together,’ and it is already mid-November.   As I look at it, it is probably too late to get on top of some things, but still far too early to scrap it all and say “Next school year…”  I might not be putting out large medical fires (most gratefully!) but I can pretty much guarantee that I will still be taken by surprise for parent teacher conferences or some other school function that I probably should already know about.   Never mind about the various forms and deadlines, which I will openly admit that am appalling bad about.  In this regard, I am still trying to catch up.  I am most fortunate to have lovely friends who remind (read: inform) me of essential meetings.  It does take a village, apparently. 

Because, I have just been buried.  I am happy to report about our trip to MSKCC earlier this week particularly because New York had good things to offer:  Brent starts physical therapy on Thursday.  May we remain on this path of healing and strengthening.  It has certainly been a long time in coming.  Glory Be!

Whenever I get overwhelmed, I go back to making lists, and crossing things off.  This week, my medical list got pared down from ridiculous to somewhat reasonable, by Ramer standards.  So, now I can focus on the business of trying to run a household with four children in it.  That list is now ridiculous, and, as I have stated, I don’t even know everything that should be on it.  Maybe I will just start with groceries and bedtime stories.

And clean socks.

Boring is beautiful, and not just on scan days.  But, if I had to pick, I would take 'boring' on scan days, every single time. The rest is easy.  Or at least a hell of a lot easier.  And recognizing that fact, the focus on it, this will get me through.

 

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.

Knowing: The burdens and the blessings

Knowledge is power.  Knowledge is responsibility.  Knowledge is a call to action, to vigilance.  No wonder they say ignorance is bliss.  (Ha!)

On my LFS support page this morning, someone wrote about how they can now test embryos and using IVF, select for implantation only those that are mutation free at p53.  There are those who have successfully carried a mutation-free child.

I knew that this could be done because my geneticist told me about it when we learned that Brent had Li-Fraumeni Syndrome.  They also shared the new Toronto Protocol with us, which is a screening protocol to find cancer early.  The folks at University Hospitals, I think, were piling on the latest options and improvements to mitigate an otherwise devastating condition.  The lion’s share of research up until this point has focused on “How do you feel, now that you know?” and the psychological ramifications of living with this knowledge of a faulty tumor suppressor gene.  The failure of this gene often results in multiple episodes of cancer, sometimes simultaneously.   

I will not pretend that this is easy, either the knowledge or the attendant worry that comes with it.  As I have shared, a series of headaches in my 11year old begins with ‘rule out brain tumor.’  That is a tough way to live, but far better than sitting back and waiting.  Because after 3 episodes of pediatric cancer, we were going to worry anyway.  At least with the knowledge, we can take action and find things early.

Similarly, there is power in taking action, of being able to choose only healthy embryos, in being able to eradicate this mutation in the future.  Who wouldn’t want a healthy child?  This is a no brainer.  But as I considered this some time ago, about how I would explain this option to my children when the time is appropriate, I realized the ethical and existential morass that this would be.  Because this decision, in a way, denies the validity of my children’s lives.  If I present this option, it is implied that I would not (or might not) have chosen to have them if I had known.

It is kind of loaded.  Because we didn’t know. 

This would be prime time for calling in some of those psychological researchers and positing the question.  “Well, how do you feel, now that you know?”  What I do know is that there are many ways to form a family.  I will consider it an enormous blessing for my kids to have the opportunity as adults, to wrestle with exactly how they would like to accomplish this.  I will be very grateful for this particular problem.

 

Yesterday, there was a news release out of Memorial Sloan-Kettering, a hospital that we know well.  They were reporting advances in targeted cancer therapies, ones that use our own harvested T cells, which are infected with a virus and programmed to attack a particular tumor cell.  This is accomplished by looking at the genetic profile of the tumor.  And sometimes, by doing this, they stumble upon information that they weren’t looking for, like a BRCA mutation or LFS in the patient.  There are ethical conundrums that come with this data. Are researchers ethically obligated to share this information with the patient, which can have clinical implications?  Does the patient want to know?  Should they know?  Should you even pose the question to the patient, which all by itself opens a Pandora’s Box of worries? 

There are families with LFS that are torn apart, not just by cancer, which is difficult enough, but by the decision to seek genetic answers.  Because this is a family syndrome, even establishing the diagnosis for yourself has implications for everyone else who shares your bloodline.  So, in some families, having a p53 mutation established poses the question for other family members and by extension, their children.  For those who do not want to know, it can become an issue.  And they no longer bring the green bean casserole to Thanksgiving, let’s just say.

I am an avid proponent of research.  I celebrate advances in all areas of cancer, which you might contend is hugely self interested, given the likelihood of us dealing with more cancer.  I am no position to deny the charge.  But even with a dog in the fight, I recognize that scientific advances sometimes come faster than we can wrap our head around them.  This is ironic, because research seems to go slowly when you participate in it…or if you are waiting for a particular advance in a timely way.

I think of my friends, those with LFS, each fighting in their own way.  Battling the worry.  Being grateful for the worry, when it turns out to not be cancer.  Battling the cancer when it comes.  Or, when it comes back.  The fight is mental as well as physical.  It is all grueling, and it never ends.  But through this devastating and demoralizing disease, because of it actually, I have come to know some amazing people.  While I would much prefer that we had met at PSO function, this is the hand that we have been dealt and these are the people that have been placed in my path, on this path.

I am going on Thursday to meet some of these wonderful people in Boston.  The researchers.  The mutants.  I want to learn what advances are coming and how they might help my children.  All of our children, because we have become one big mutant family, bloodline be damned.  The blessings cannot come without the challenges….my new extended family is the blessing.  The challenges still suck.

We are fortunate that the Ramers are not waiting for ‘a particular advance in a timely way,’ nor are our children forced to wrestle with existential quagmires. 

Not today at least. 

HONY, Cancer and the Ivory Coast

I follow the HONY page on Facebook, which is fantastic.   A man walks the streets of NYC and takes photos of average people (and admittedly, in NYC, there is no shortage of ‘characters’) and asks them some questions.  He posts the brief interview, or a caption, and the picture. 

I enjoy it, because I love NYC, having spent much time there while my son Brent sought treatment at Memorial Sloan Kettering Cancer Center, but also because I believe that there is something very powerful in what Brandon does.  He finds terribly interesting, funny and touching stories out of the most unassuming people.  And I believe that he challenges people to look at those around them in a new light.   Everyone has a story, if we only stop to consider what it might be.

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

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

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

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

 

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

While I disagree with Ryan Pulito, I really do not want to get pulled into a pissing match with him.  The political contentiousness that we have in our country,  I also consider that to be a blessing, not experienced in many other countries.  While some despairingly say that we have never been so ‘divided’ in the US, and conversations certainly can become heated, they are combative conversations, not actual combat.  Talk to someone from Somalia, or Syria or many other places in the world, and they can explain the difference.

I have been thinking a lot today about those blessings that we are afforded.  One, interestingly enough, is Pediatric Cancer Research, which we strongly feel is grossly underfunded.  We are blessed with both the opportunity to complain about it, as well as the opportunity to do something about it, precisely because of the political stability we have in this country. 

How much money do you think is invested in cancer research in war-torn African countries?  How many research facilities exist there?  I imagine that there are not many, because building elementary schools and hospitals is a big enough challenge.  Survival, in the most immediate of terms, is the highest priority.  It has to be. 

And because of this, everything else falls away to a very distant second. Investment in such sophisticated things as genetics labs or cancer research facilities, ones that might easily be taken, or destroyed, seems very risky.  Investment in science, quite frankly, should be a low priority if you are more likely to die in violent political reprisals.  Someone wise once told me, "Battle the shark closest to the boat."  Cancer is clearly not their shark.

Our stability, and the long general experience that we have with peace within our borders (recognizing, and in no way diminishing, the occasional episodes of violence, such as 9/11), permits us to have investment in cancer research, facilities adequate for the task, and scientists and doctors educated enough to tackle these tough problems. We assume peace, because we have no memory of anything else.  We proceed and invest accordingly.    

It all starts with the foundation of political stability, a blessing that I do not take for granted.

With an absurdly rare genetic predisposition to all forms of cancer (Li-Fraumeni), and two children with cancer (and 3 different types between them), I maintain that we are lucky.  Lucky to live here.  Lucky to live now.  And lucky to have the opportunity to try to help researchers advance their understanding of cancer and of genetics. 

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

We do worry about cancer visiting our home. 

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

The ribbon, this month, is gold

September is pediatric cancer awareness month. 

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

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

 

 

 

 

Hollywood and our One Hip Wonder... 

 

Dan had posted something to the effect that we do not look at statistics, mostly because we have found no comfort in them, nor have we ever found that statistics have been relevant to our experience.  We absolutely never say the phrase "What are the odds?" in this house.  With only 400 people in the U.S. with our genetic disorder, well, lets just say we would prefer to take those odds to Vegas with a five dollar bet, and come home bazillionaires. 

 

However, there are some things that statistics can help illuminate.  Pediatric cancer is rare (unless you are a Ramer) According to the American Cancer Society, 11,630 children under the age of 15 will be diagnosed with cancer this year, making it less than 1% of all cancer diagnosis. But, while that may not seem like a lot of children affected in one year across the US, consider that one in 333 girls and one in 300 boys will develop cancer by the age of 20.   

 

While it is generally understood that every cancer is different, and even within "breast cancer," for example, that there are different subtypes each carrying their own treatment protocol and different prognosis, it is not generally understood that children's cancers behave differently than adult cancers.  Also, the considerations for children are vastly different because of their developing bodies, the effect of treatment on their bodies, as well as the length of time that they will live with the unfortunate damage of these toxic treatments. But, because of how rare pediatric cancer overall is, there is not much financial incentive to develop new drugs for kids.  They get the 'hand me down drugs' of the adult cancer world.  In 20 years, only one drug has been developed for kids with cancer.

 

I am not here to complain about the system, or to bash pharmaceutical companies, who are in the business of addressing the needs of the many, and yes, I do recognize, for profit.   Because loads of women get breast cancer, there is great need for new therapies, which is why there have been advances.  Honestly, I am very glad that there is not a more market driven incentive for pediatric cancer drugs.  I am not at all interested in more kids getting cancer.  Naturally.

 

But, that doesn't mean that I wouldn't like more advances, and much more research in pediatric cancer.  Dan and I feel passionately about research, and are hopeful about the collaboration of the Children's Oncology Group, which implements research protocols at hospitals across the country.  Because, while there are enough ladies in a city the size of Cleveland to make up a decent cohort for breast cancer research at either University Hospital or at the Cleveland Clinic, you have to consider that there are not enough children in one geographical area with osteosarcoma or even a more common cancer like leukemia (ALL), to make up a proper research group.  The COG helps coordinate research protocols for children, studying the efficacy of new drugs and treatments at institutions across the country, so that together, the children make one research group.

 

I was asked by a friend about how to best support pediatric cancer.  There are loads of charities, some of which help families directly (which I will talk about at another time) and some who have a mission statement dedicated to raising much needed pediatric research dollars. Not cracking on the American Cancer Society, National Cancer Institute, or the Leukemia and Lymphoma Society, but less than 4% of their money goes to pediatric research.  These are fine organizations but because their mission statements are much broader, the kids again are lost under the giant cancer umbrella.

 

If you were interested in supporting research on pediatric cancer, you could donate directly to an institution, one like Memorial Sloan Kettering Cancer Center, MD Anderson, or St. Jude's, earmarking your funds for a particular researcher, or research area, noting your interest in pediatrics. (This is akin to buying individual stocks)

 

If that seems like perhaps too much work, to establish which institution or researcher you would like to support, there are charities dedicated to supporting children's cancer research, where you get the most pediatric bang for your buck without sorting through researchers yourself.  (I like to think of them as the 'mutual fund' of pediatric research.)  Here are a few: 

 

Flashes of Hope                             http://www.flashesofhope.org/

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

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

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

 

We are personally associated with the sister charities Flashes of Hope and Kick It.  Last year, Flashes, whose goal is to photograph every child diagnosed with cancer, until every child is cured, raised $650,000 at the Big Shots and Little Stars event in Cleveland.  Lauren had the opportunity to walk the runway that evening and enjoyed herself immensely while helping that cause.  This year, our family's story will be featured at the event, in an effort to raise some more research dollars. 

 

Kick It, which was begun by Quinn Clarke, a boy diagnosed with rhabdomyosarcoma, began with the idea that children could raise money for pediatric cancer research by playing kickball, Quinn's favorite game.  It has expanded every year, and this year at my children's middle school alone, they raised $31,000 in the month of May.  This money, raised by children, was dedicated to metastatic osteosarcoma research in Brent's name.  Osteosarcoma, being an orphan disease, generally affecting teenage boys, is the redheaded stepchild of research, receiving very little attention or funds.  We are so grateful for those dollars being directed in such a personally meaningful way.

 

The CDC lists cancer as the 2nd leading cause of death of children, after accidents.  We are hoping to push that way down the list.  No child should ever develop cancer, and I have to believe that with the proper resources, there are bright minds that will eventually figure it all out.  We are working on helping to secure the resources for those bright minds, right now. 

 

Any help you would like to offer would be appreciated.

 

 

 

 

 

Here is something that I found on the Kick-it website written about both kids, Hollywood and Mayberry:

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

 

 

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.

Figuring it all out

Well, I will finally know the answer.  The doctors always ask the same questions.  You would think that I would be better prepared.

"What is the first day of your last period?"   Today.  7/31.  I always had to guess at the doctors office before, not really sure, and make something kind of plausible up.  Unless Mother Nature has a surprise, this is the definitive answer.  For all time.  My ovaries come out 8/29.

On the one hand, this is a very good thing.  An end to discomfort and inconvenience, both physical and emotional.   I joked with my LFS friends that I am trading up in a way...cranky and irritable only every 3 months for scans, rather than the more traditional waxing and waning of my emotions on a monthly basis.  

I will be limiting my cancer risk.  But more important to me, by having these various tissues sampled and studied, I will hopefully discover what that overall risk actually is.  Less organs, more information. Information is good, and these organs can only go bad.

These answers might, in a way, provide some guidance with regard to our children.  Should I have mutation in my breast tissue, for example, but have not developed breast cancer, this could suggest that our mutation isn't one that runs aggressively in breast cancer.  Each LFS family mutation is different, and some families run brain tumors, or are rife with breast cancer, always with the sprinkling of other malignancies, of course. Of course.  

We are fortunate to have a short LFS story, because we haven't had a lot of cancer up our family tree, which would be difficult in obvious ways. But the flip side of that is that we have no family history.  Many screenings are slated to begin a few years before the earliest family onset of a particular cancer.  We have a giant question mark, which is its own challenge.  

I am a giant question mark, unto myself.

So, this surgery is a good thing.  

However.

I am not an automaton, devoid of emotions about this.  I did look up menopause to figure out what I will be abruptly jumping into. Plunging into that change will be no picnic. It doesn't alter my thinking about this, but it does pinch at my heart a bit.  How could it not?

I had Olivia just before I turned 39.  I felt comfortable playing volleyball and hanging out with friends much younger than me who also had little ones.  While much of the past few years have been a nightmarish blur for me, this surgery seems to be fast forwarding me to 50.  What the hell happened to my 40's? 

There is something about my corporeal identity that my girl parts seem to represent.  I am a wife and mother.  This is what I am, and what I do.  Somehow, as irrational as it sounds, I feel like this identity is somehow threatened, evidenced by the fact that my uterus and ovaries are now unnecessary, and are in fact a problem worthy of such effort, to eliminate them.

I have mentioned that there is often a disconnect between my head and my heart.  My head always wins, but my heart usually makes a good showing. This would be a prime example. 

It is my choice to have this surgery.  But among my menu options, while this seems to be the best one, it still is complicated.  Everything with LFS is more complicated.

What is simple (and obvious) is that I won't look different as a result.  Brent will always have giant scars and a limp, having lost his entire right hip bone. Lauren has a special part in her hair, one that most other girls do not have, a scar from ear to ear.  This is reminder of her losing a piece of her mind, literally, while I was losing mine in a more figurative sense. It occurs to me most of my closest friends with LFS have had mastectomies. 

These losses are externally apparent and naturally bring identity challenges in all sorts of areas, complete with looks, and questions.   I won't have those sorts of challenges. However, while I might not look different, I do know that I will feel different.

When I got my tubes tied, I felt 'broken' for a while,  understanding that again, I chose to do it, and the broken part, in fact was the whole point.  We didn't want more children.  I didn't want more children. (Hello?!! We were already a Nation, as things stood. I was no spring chicken).  But it was still difficult, somehow.  I chalked it up to postpartum hormones back then.

And maybe I should just chalk up this current mental battle to my ovaries giving me one last hurrah of hormones, simply because they can. A parting gift to remind me that there are always good things to be found with the bad.   It all in where you focus.  Sometimes, it is just hard to focus at all.

Like before tomorrow's scans.  

Next month, I will be done with PMS, in order to be in a better position with LFS.