Today is not that day.

A few weeks ago, I contemplated some time of my own, relishing in the luxury of how I might spend it.  I have a friend who frequently mentions that this sort of activity might anger the cancer gods.  I don't believe that life works this way, although I might have to give greater consideration to this notion. You can decide for yourself.

We are not, most gratefully, busy with cancer at the moment, but rather, cancer's aftermath.  

I worry that I might be developing a credibility problem.  If you google Li-Fraumeni, our rare inherited cancer predisposition syndrome, you will find an explanation for the six uncommon cancers in my children. If you search "necrotizing fasciitis," you might conclude that we are branching out from cancer, but in a no less devastating or dangerous way.  If you do not know our family, you might not believe me at all. 

Brent has spent the past two weeks in the hospital with a stunningly aggressive infection: a flesh eating bacteria. Four of these days were spent in the pediatric intensive care unit, three sedated and on a vent as they managed his septic shock.  Shock, would be the most appropriate word in that sentence.  He had six surgical interventions to remove necrotic tissue on his back and he faces several more in the coming months of healing.  

It is surreal, even typing these words out.

Whenever we have faced daunting odds with a cancer diagnosis, invariably someone will helpfully point out that death by cancer is not assured.  We might just as easily get hit by a bus.  For the record, I have never found this to be terribly comforting. If you find that you must support someone with cancer in this vein, I would add "or flesh eating bacteria" to the bus comment. 

The most helpful bit of encouragement that I ever received, came nearly five years ago from my sister.  As I despaired about our genetics, and the osteogenic tumor that encompassed Brent's entire right pelvis, my fear overwhelmed me.  Laurie was everything that I needed in that moment, acknowledging my fear as justified. "It is possible that all of the things that you fear may happen. It is possible that your children may die. But today is not that day."

I cannot say how many times I found the strength to tamp down my fears as worrisome things happened with these words "Maybe... But today is not that day."  I found a way to live, and to laugh, and to love.

However, in the interested of balance, I should also mention that I cannot count how many times in the past five years that I prayed "Dear God, please help me, because today very well could be that day."  Thursday, July 14th can be added to this tally.  

As they wheeled Brent out of the PICU to the OR, I despaired in a room littered with medical debris from hours of efforts.  Dan turned to me and firmly said, "This is only another chapter in the book." My husband is a rock, full of faith, in my moments of doubt.

As Brent's health progressed last week, our family resorted to humor. We told Brent of the things that transpired while he was so very ill and sedated. Upon learning that he had flesh eating disease, Brent quipped that this was nearly as cool as Lauren's proposed scorpion venom trial, something worthy of a zombie apocalypse.  Alex had offered his own skin if a matched graft for Brent would be a better option. (I am so proud of him for offering his brother a pound of flesh, in addition to bone marrow) There was much joking about how hairy Brent's back would be with Alex's skin attached. I am a firm believer in whatever gets you through. We are going to laugh as much as we can, and fairly inappropriately, or so it would seem.  

We are blessedly home, but many medical issues remain. Equally challenging, I am left wondering how to thank the legions of people at Rainbow Babies and Children's Hospital who have cared for us. I have felt this way before, once with Brent's orthopedic surgeon at Sloan Kettering. I struggled to find words that were adequate in expressing our gratitude for his help, saving both Brent's leg and his life. Dr. Healey, full of grace, simply asked that we go and lead a full and happy life, using our talents to make the world a better place.  

Well, then.

Despite my ardent wish, The RamerNation has yet to find a bit of 'boring,' the term we use for medical quiet. But beauty is evident in all of the unexpected places that we find ourselves.  Our experience has been extraordinary by every medical measure, and by virtue of the folks who have crossed our path. 

I am so grateful for every day of our life together, trials included.

Mutant Mentality

I was walking the dogs with my daughter Lauren, to stretch out her sore muscles from her recent foray into cross country.

We have long been talking about being thoughtful, and developing good habits.  Mostly, these have been tangible or outwardly visible habits:  eating healthy food, exercising our bodies and minds, spending time in service to others, both in our family and in our community.  Like running, it is hard work at first.  But with practice, we do not need to think about these things, as they simply become incorporated into who we are.

Last week, however,  I spoke to Lauren about her mental habits, the ones that go beyond developing an intellectual curiosity (my kids are daily encouraged to read 'something smart' that is not covered by doing homework)  While I can check in with Lauren to see how she understood an article in the newspaper, I cannot as easily see the mental dialogue she has going on.  After she joined cross country this fall, I have gotten a glimpse of a mental muscle that needs stretched and strengthened along with her quads and hammies.

We talked about how on the back stretch of the course, when the sun is hot, the encouraging crowd is sparse and her body begins to rail against the run, her mental dialogue is, unsurprisingly, fairly negative.  She is tired, and sometimes she walks a bit.  I do not mind the walking, for the record.  But we talked about how the thoughts in her head influence her actions in those lonely parts.  In order to get better, to be stronger and to win--not the race overall, but to win the competition, the one that really matters in my opinion is the one in her mind--she needs to be disciplined in her thoughts.

Over time, repeating the affirmations ("I can do this."  "I am getting stronger." "The crowd will be around the bend to encourage me." "There are those ahead of me and those behind--I am not alone") and repeating the motion of taking one step, then another,  both of these things will become habit, not worthy of the monumental effort that is required to accomplish it now. 

Focus on the good, always.  If you focus on a problem, let it be only in order to fix it, otherwise it is wasted energy.

I was reminded of our conversation as I checked in this morning on the LFS support group that I help a friend administer.  A woman from Brazil shared that while her brother tested positive for LFS, he did not consider it a death sentence, because their mother had beaten cancer 5 times.  I thought about how many people in our group have benefitted by sharing our experiences, particularly our successes and the successes of the researchers that we deal with.

Our individual stories may be frightening and overwhelming.  But through this support group over the past year and a half, I have seen a change in the collective mental dialog.  Instead of LFS being considered a death sentence, and one to depressingly bewail, waiting for the next cancer to arrive, there has been a shift, to cautious optimism, with encouragement coming across the internet in the lonely back stretch.  The prevailing theme is one of determination, and hope.  And action.

When we give voice to our fears, we can begin to conquer them.  When we are tired,  tired of cancer, tired of fighting, we can reach out for encouragement. For compassion. For ideas.  For information.  For resources.

We have begun to change the culture, that place in our brains that focused on futility, and despaired of our 'predisposition' to cancer, twisting its meaning to become 'predestination.'  While death will come to all eventually, and cancer is likely to come to us, we are now facing it on our terms.   There are meaningful and effective things to do, both in our personal battles, as well as in our community. 

We are now doing them together.

While every day cannot be a raging success either on the mental or physical front, we are collectively improving on both, becoming stronger and more proactive.  I am proud to be part of this change.  I am grateful to be part of this community, cancer aside.

We are busy Living LFS.


LivingLFS.org

It is a great time to be a mutant (if you have to be a mutant)

I was driving Brent in to the hospital on Thursday afternoon.  It was the last day of school before Spring Break and Brent was going to get his drain out, which was most welcomed.  After telling me all about his day, Brent asked about mine.


"What did you do today, mom?"


Well, among other things, I had watched a webinar about metastatic melanoma.  There is a researcher out of MSKCC that has grabbed my attention in the round about way that my life works.  When a webinar featuring Dr. Jedd Wolchok was posted on my news feed, I registered.


I suspect that stay-at-home moms were not the target audience, given how science-y it all was, but I found this thing to be absolutely riveting. There are promising things in immunotherapy, specifically with regard to melanoma, but these ideas can be applied to other forms of cancer as well.  I am very encouraged.


In sharing some of the things that I learned with Brent, I spoke to him about how much has changed, even since I first learned about Li-Fraumeni Syndrome, just ten years ago when Lauren was diagnosed with adrenal cancer.


Ten years ago, they were just starting to test families who they suspected had Li-Fraumeni, for a p53 mutation, in order to identify which family members were effected.  Prior to that, parents could only wonder and worry that they had passed this cancer predisposition to their children.  I would still be worrying about Alex and Olivia, had the genetic testing not proven them to be genetically sound at P53.  They have the same cancer defense as everyone else.  This scientific advancement has directly benefitted our family, eliminating half of our worry.


But even five years ago, if you did the testing, there was nothing to be done with the information for people with a positive result for the mutation.  Brent was diagnosed with osteosarcoma in the fall of 2011, right after the Toronto screening protocol was picked up.  By using this screening guide, we began the proactive hunt for cancer, finding Lauren's brain tumor early, before it caused her bigger problems.


This same protocol picked up Brent's current cancer, melanoma, long before we would have suspected that he had a problem.  While I am not happy about the fact that we are on our fourth pediatric cancer, or the fact that Brent has a year long treatment, I must to concede that the screening protocol is in fact working.  We are picking these cancers up in the earlier and more treatable stages.


I shared with Brent about a study that they are doing at the National Institute of Health, which is trying to determine if using an existing drug, used off label, will help prevent cancers from developing in the first place.  I am going to meet with the researcher next week to talk about this.


The research keeps moving.  At first they simply identified families with likely genetic predisposition.  Then they identified the gene that was mutated in all affected family members.  They are now trying to get ahead of the cancer, by screening for it.  The current research seeks to prevent cancer from happening to begin with.


Brent asked if this progression was like the diseases that were deadly 80 years ago, but we have vaccinations for now. If you were to get diphtheria back then, you might die.  But now, people do not get often get diphtheria, because of vaccines.  And if you do get it, it is much more treatable with antibiotics.  I am hopeful about this notion, and hopeful that we are on the very edge of similar advances in cancer.


I told Brent that when he was first diagnosed with osteosarcoma, I was overwhelmed and afraid.


"I was afraid too, mom."  This is the first time he has said such a thing to me. "But it is a great time to be a mutant... if you have to be a mutant."


I like his optimism, especially at times when mine falters.  We move forward...always forward.


 

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.

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

 

 

Alice and Dorothy

 

I have tried clicking my heels on more than one occasion, wishing ourselves a return trip home, channeling Dorothy and those fancy kicks of hers.  There is something about these two sitting down together that just tickled me when I saw it on FB.  (And if Dorothy is any kind of friend at all, there is something stronger than tea in Alice's cup.)

 

 

That is no lie.

 

 

I have often used the phrase "going down the rabbit hole" to refer to the whole cancer experience because it is just so otherworldly, not unlike poor Alice's journey.  Suddenly there are strange cakes to eat, bottles of stuff to drink and everyone seems to be speaking in an odd language that only somewhat resembles English.  The rules are upside down. Nothing seems to make sense. Your body is not your own.  Everything is foreign.  Surreal.

 

We too, have seen some weird shit.

 

A friend of mine has a son going through treatment right now, and mentioned that they worried that he might need a transfusion, which he has never had.  I vaguely remember the first time Brent needed transfused, our worry and concern, having never done something like that before.  He has had nearly 40 transfusions to date.  We are very grateful for the donors, but not remotely anxious about the actual transfusion, when such an occasion arises.  We have spent far too much time 'Through the Looking Glass,' if such a thing has become routine. 

 

We were told at one point to be alert for the symptoms of narcotic withdrawal on our 12 year old, several weeks after his 18 hour surgery. "Umm..can you tell me what they are?" having no practical experience with narcotics, much less the associated problems with weaning your child off of them. We do not bat an eye at a 5 hour surgery, either, considering one of such length a "middle of the road procedure."

 

We wound our way through genetics. I have thought at length about myself at the earliest stages of my own development, where somehow, I went rogue in the most unusual of ways. I have talked to my kids from a young age about how some decisions are critical and can have a huge impact on their life.  What was my microscopic 64-cell self thinking?  Or was it much later? Regardless, that had some impact, that genetic 'improvisation.'   As a mosaic, I am a freak, even among mutants.

 

I was always a strong believer in nurture over nature.  Somehow, I must concede that nature scored one in this skirmish. 

 

Brent experienced hyperbaric oxygen treatments, without ever visiting Michael Jackson's Neverland Ranch, which as I understand it, is what many people in the general public associate with HBO.  Yes, it is a real treatment.  With insurance codes and everything.

 

I took my 10 year old to my OB/GYN to have her lopsided ovaries checked out today. (all good there, btw)  It was absurd trying to fill out the electronic patient questionnaire.  There were not nearly enough spaces to explain Lauren's cancer history, and far too many other questions, all of which should have been covered with the blanket observation that "She is 10," Unfortunately, this was not one of the options to select from.  Most 10 year olds don't go, of course.

 

We have been down the rabbit hole for a long time, and have begun to peek our heads out a bit, which is kind of an adjustment, and rather bewildering actually, being exposed to sunlight after so long.  We are blinking and rubbing our eyes, looking at the great outdoors.  Dan says that the weather has been 68 degrees and fluorescent for 2 years now.

 

 

Our lives were hit by Dorothy's tornado. "It's a twister! It's a twister!"   Now, we are sweeping up the rubble, literal and figurative.  I have stored away IV supplies worthy of a small ER, and wound care supplies I hope to never need again.  I have shut down my kitchen pharmacy, at long last.  We get to take a 2 month hiatus from pediatric oncology...scans are not scheduled until mid October. 

 

Dan and I have looked around at what remains, and are grateful.  Sure, there are things that we need to realign, things that took a back burner, low on the priority list for too long.  But at the end of the day, we are poking our heads out of the rabbit hole as a family.  There are some scrapes and bruises, naturally, but we are all here.  This, we do not take for granted. 

 

There is a saying that a person doesn't get cancer, but a family does.  I am pretty sure they didn't mean this particular genetic problem, whereby a family literally gets cancer, but rather that cancer affects all members of a family.  I think that we are doing OK overall. We would prefer less screen time for the kids (both on electronic devises, as well as in hospital), but what parent out there doesn't?  Probably, we will adjust to 'new normal' just fine.

 

Everyone who does this cancer detour has a different experience.  But it universally crazy. Oz, Wonderland, Lilliput... Hades... When Bizarre-o-world begins to seem normal, you know it is time for a break.  We were due for some time away, and I am very happy to bid farewell to the Wizard and check out of Hotel Wonderland. 

 

We know that we are likely to be back at some point, given the LFS.  Dan says, if it is 2 months or 20 years (I vote for 20 years-longer, actually) we should spend our time in the meanwhile living, with joy and happiness.  No argument from me, with the addition of vigilance.  Joy, happiness and vigilance.  

  

And of course, I now have Grace Slick singing in my head: 

     

One pill makes you larger
And one pill makes you small
And the ones that mother gives you
Don't do anything at all
Go ask Alice, when she's ten feet tall

And if you go chasing rabbits
And you know you're going to fall
Tell 'em a hookah smoking caterpillar
Has given you the call
To call Alice, when she was just small

When the men on the chessboard get up
And tell you where to go
And you've just had some kind of mushroom
And your mind is moving low
Go ask Alice, I think she'll know

When logic and proportion have fallen sloppy dead
And the white knight is talking backwards
And the red queen's off with her head
Remember what the dormouse said
Feed your head, feed your head

Read more: Jefferson Airplane - White Rabbit Lyrics | MetroLyrics

 

 

HA!  And now you do too.  ;)

 

Feed your head!



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.

Shared Parenting

My geneticist emailed me yesterday with the good news that she has figured out a way to pull the DNA from paraffin block of breast tissue, removed from me four years ago.  No, I do not understand, yet, what that all means.  I do know that this was a problem, getting the DNA out, and one that she has apparently solved (It is easier to achieve from a fresh or frozen sample, as I understand it.) I will get back to you about the details when she and I get together and chat in a few weeks.

Thinking about this, it occurred to me, that what we do here is complicated.  This could be explained by the whole cancer experience.  Heck, that statement could easily be justified by the simple fact that Dan and I have four children.  But I am talking about genetics.  Genetics and cancer are daunting things to try to understand, and even more so to explain. 

We can super-simplify things and say that we have a bad cancer gene and because of that, we get cancer.  But that really doesn’t explain it sufficiently, on any level.  Medical, emotional, relational…the list goes on.

You likely do not consider your genetics much, but they do influence the way that we move in the world, more than we think.  Aside from determining how much product I really ought to use in this humidity (but don’t) to tame the ‘snakes in my hair’ as Olivia likes to say, genetics in subtle ways define us, and nudge us in particular directions.   And we seldom think about it much, as our cells divide millions upon millions of times, even as I sit here writing this. 

If you are lucky, you find that your genetics combine with your passion, such that you can become a world class runner, for example.  When they match up, it is easier to find success.  If you have a passion for running, but have a less than stellar genetic make-up, you might have to overcome your genetics with really hard work.   My passion of late, my obsession perhaps, has been helping my children beat cancer.  I would be the latter example, that while this may be my passion, I certainly need to overcome my genetics.

Research indicates that children from two parent families fare much better, in a host of areas.  This is not surprising, given that when one parent gets tired, there is a back up to step in and keep the youths from acting up.  Once in a while, mom stays out late at book club, but Dad makes dinner, handles carpool and the kids still brush teeth.  If Dad works late or wants to golf all day on Sunday, mom manages to pack lunches, read bedtime stories, and set out clothing for Monday morning.  It works better this way.

Not that there aren’t successful single parents, but the odds certainly favor any children from two parent households.  This maxim continues to hold when you carry this analogy to genetics.

Genetically, we are half of each of our parents, who share the responsibility for what we become…blue eyes, brown hair, height…we all understand this basic part of shared genetics in some way.  But there are other more complicated jobs involved,  and monitoring cell division to be sure that our genetic code is copied properly is among the most important jobs. 

If you consider that there are countless codes and arrangements of proteins along our DNA that must be correctly copied each time we make a new cell (I imagine a billion tiny monastic scribes, scribbling away along the double helix), somewhere along the line, someone must supervise, because the monks get old, tired or might just be hitting the sacramental wine.  We are human and prone to error, after all.  P53 is the ultimate quality control, or parental control, so that shoddy product doesn’t get out there and replicate.  There are supposed to be two inspections of the work, each putting their stamp of approval on it.

With Brent and Lauren, genetically speaking, I have been a pretty horrible parent.  I never supervise their work, because I provided a non-functioning P53 gene, utterly ineffective, completely indulgent of their misbehavior and “creative license” in copying code.   I never correct them, or keep them in check.  I enforce no rules.  As far as I am concerned, they can run wild in the neighborhood, play music really loud, flunk out of school, cover themselves with tattoos and generally become less than model ‘citizen cells.’   And then reproduce.  Umm, yes, that is cancer.   

Dan, on the other hand, has been the genetic watchdog, the good P53 parent, reading over homework, correcting their spelling, making sure that they tow the line.  Only three times has his genetic supervision slipped up: once, in Brent’s 13 years, and twice in Lauren’s 10 years, despite billions upon billions of cell divisions. 

And I, for all of that time, have been gutter-drunk at P53, for more than a decade.  I failed to step up, and genetically ‘parent’ at these critical times.  Other moms do, which is why childhood cancer is so rare.  It may be irrational, but there is a guilt that comes with this understanding, and if not guilt, exactly, then certainly a sense of responsibility. 

Now, before you chastise me and point out that I didn’t choose this for them, I am well aware, in my head, that this was well beyond my control.  But, as I like to say, what you know and what you feel are not always in agreement.  And it would be dishonest to suggest that this isn’t something that I haven’t struggled with on some level at various times, this disconnect between head and heart.

And probably, subconsciously, I try to compensate for that.  Perhaps it is better said, I overcompensate.  If I failed to be vigilant from the inside, at the genetic level, I am hyper vigilant in their battle against cancer on the outside, attuned to potential signs of problems, checking over the labs and scans with the doctors.  I am pretty hands on, from the outside. 

Dan said the other day that I write sometimes like I am a single parent.  This put me into a funk, one that I couldn’t seem to shake, because he is integral to our story as a family, and I consider him indispensable.  I cannot imagine doing any of this without him.  It occurred to me that my rather emotional response was likely due to the irony that he has long been the single parent at the genetic level.  I am aware that there is no logic in this.  Because so much about this doesn’t make sense, I am not going to fight it, but simply acknowledge it.

It is all so complicated, but at the same time, quite simple.  We want the best for our children and we want to be our best for them.  Sometimes we have to overcome our genetics, sometimes other circumstances.  But we keep working at it.

That part is universal.

Mother-of-four day, average pediatric cancer day, or LFS day?

Some days are 'normal mother of four' days.  Some days are 'normal cancer' days.  Some days are LFS days:  We ratchet it up a notch for those.

So, we are blessedly, and most gratefully, home.  And we have no immediate oncological worries.  This makes it, upon waking, quite possible for it to be the first sort of day:  a 'normal mother of four' kind of day.

But, as I would point out, today I woke at 4:30 am...with the vague understanding that something was amiss.  I walked into Brent's room, and realized immediately that I did not flush his line and unhook him at 1am,  like I was supposed to.  This was because, as I soon realized, I neglected to plug in my phone... which was obviously dead, failing to alert me as it faithfully does nine time as day to what I must do antibiotic wise.

Ahhh!   I unhook, flush, and heparin... only to reflush, and hook him up a mere 2 1/2 hours later, with the new bag of vanco.  Such is my life.

This now qualifies as a cancer day, because while this is not active cancer nonsense (Thanks be to God!!), it does, however count as cancer aftermath.  I want points...although we recognize that they are not so different: parent points, spouse points, kid points...and we actively tease that they are all redeemable for nothing in our house.  Collect all you would like!    :)

So, I kept the Vancomyacin train running on time. Kudos to me!  I can collect a bazillion points!

But, of course, it cannot end there.  We aren't those sort of underachievers.

Lauren has scans on Monday, July 8th.  I will most gratuitously borrow from one of my brilliant LFS friends and leave the annotation completely to her wishes:  LFS could stand for 'Living For a Season.'  We do quarterly scans that make living a seasonal affirmation...and God willing, one that we Ramers might continue without chemo, radiation, surgery etc...   Our 'season,' well... it is upon us.

This would make it an LFS day alone.  But we do not simply indulge in such episodic anxiety.  We Ramers need to add something more. So, on Friday, I got the call... from Make a Wish.

Make a Wish is a wonderful organization.   I have a whole bunch of text that I put together after Brent did his MAW a few weeks ago.  I haven't had the time to put it together with the photos (shame on me!!) but, even without this, let me just say that they do an amazing job with kids in a tough situations.  Lauren, with the whole 'Brain Tumor thing,' qualifies as one in a tough situation, without being at all understated.   We do a lot of understated in our house, for the record. 

Because failing to do so, we would be absolutely certifiable.

So,  Lauren wished to be in a movie, when she met with her wish granters several months back.  She is very Hollywood, comfortable speaking in public, and something of a ham.  Just saying.  So, I think this is a fabulous wish for her. The mere thought of this would make me personally throw up, but to each to their own.  And, as this is about Lauren, she would love to be in a movie.  We were advised that such a wish could take some time, based on character type, and movie available etc. etc.  Lauren was good with this.  She, as I have mentioned, is a pretty patient girl.

So, we received the call on Friday, that there was an opportunity for Lauren.  It was not in California, as she had requested, but NYC.  I had goose bumps.  Had it been in in California, I would have shot it down outright, knowing of our pending surgical plans on a different coast.

"Really?  When?"

" 'On set' July 21st"

I didn't know what to say.  We would already be there for Brent's surgery on the 18th.  I should remind you that we have no idea what is involved for Brent (a 3 hour surgery or 12?), or how long he will be at MSKCC. (we are perpetually surprised)  We are generally comfortable with the 'leap of Healey faith.'  It has really worked for us so far. But in LFS situations, this ambiguity adds an additional challenge. 

Do we commit to such an opportunity for Lauren?  Should we?  We do not know if Dr. Healey intends to do reconstruction or not.  It sort of makes a difference.  And not just for Brent.  Further, it is un-askable at this point, of Dr. Healey.  We recognize that it is a 'game time' decision on his part, and the outcome is utterly and completely uncertain.  Damn you, crystal ball! 

I deferred to Lauren.  When she got back from oncology camp (huge hit, btw!)  I told her about the call, and the opportunity.  As well as the limitations.  She immediately said that she didn't think it would be right for her to be having fun making a movie, if it was at all possible that Brent would be in a hospital...and couldn't enjoy it with her.  She has a pretty strong sense of family, that one.  She wasn't interested in theatre camp either, if it meant being here in Brecksville, without the rest of the Ramers.  Her preference was to be together in NYC, with no 'special' fun planned for her.

This possibility was something that we had planned for back when we had the understanding that Brent would be a minimum of 6 weeks in NYC.  For the second surgery, we thought that Dan would bring out the rest of the 'Nation,' and we would be together for a period of time, giving Brent an emotional boost for the strong finish.  He got a reprieve, in coming home for a few weeks in the middle, but the benefit of being together, for Brent, for the rest...it is palpable.  We got this time together, like the three (or 6) musketeers....all for one and one for all!

There is part of me, that understands the logistical challenges (or nightmares) of this solution, of taking 4 kids to NYC for an indeterminate amount of time.   They are not small.  But when you consider the benefit, well, it is not even a close call.  We will do what we must, that which benefits most.  Together, well that seems to benefit most.   So, we will make it happen, somehow.

Make a Wish, well, it should be simple.  Your child wishes for something, and because they have a life-threatening challenge like cancer, this fabulous organization tries to make it happen. With LFS, even the beautiful, kind and wonderful things...well, they are more complicated.  I am blessed that my daughter recognizes our challenges as a family...feels them, and responds to them appropriately.  And my hope is that she has a wonderful wish, when the time is right, for her and for our family. 

May next week's scans bring the blessing of another season to plan such things.  And to wish.  And to be together as a family. 

I do not take such things for granted.  It has already been proven that we cannot afford to.  But maybe that is the point, or the emphasis, in the blessing.

Much love!
Ann

A week full of thoughts of surgery and support

We find ourselves quite unexpectedly at home.  Brent's first surgery went so surprisingly well that they decided that he might spend the next couple of weeks in Ohio, rather than the Big Apple.  There is an abundance of blessings to be found in this statement.  

I am responsible for giving him IV antibiotic three times a day (with a 2 hour drip for each dose) until we return for his next surgery.  I am praying that this antibiotic regimen clears the infection.  None of his cultures grew anything, despite the graft being obviously infected, so we are hoping that this measure of going broad in spectrum, as well as deep in coverage (6 weeks) will wipe it out.  Whatever 'it' is, which is unknowable at this point.

I finally sorted out things with MSKCC, and our plan it to return to NYC in a bit over 2 weeks for the definitive surgery.  It is unclear at this point, exactly what form that will take, but the surprises have been good for the past month.  We are praying that they continue to be good.

As I waited for the appropriate time to hook Brent up to his IV (or unhook him...I forget which) on Tuesday night, I checked in with my LFS friends online.  The Internet is a blessing, especially for support in something like Li-Fraumeni.  With an estimated total of 400 people in the US with this genetic disorder, I would not have likely had the opportunity to meet anyone like us, with the same challenges and similar worries.  We would be essentially alone.

I remember when we initially learned about LFS, back when Lauren was first sick, some 8 years ago now, I had read about families with LFS in medical journals, but those were written for clinical use. There are no names, of course, and details about the patients are limited to age, sex, diagnosis and outcome.  The stories of these families are devastating from a medical perspective.  It was a very tough read, with little encouragement to be found, especially with the worry that we might be just such a family.  There was no sense of warmth, of hope, of connection.  It was written for a researcher, not a patient... or a parent.

When we discovered nearly two years ago that we in fact had the p53 mutation, initially, I went back to reading articles in medical journals, when I had the time. Fortunately, (??! ...that doesn't seem quite right!) I was pretty busy just helping Brent through chemo and then surgery...and follow up chemo, dealing with Lauren's brain tumor (which by comparison, seems like an acute issue)  and generally trying to keep the wheels from falling off.  I didn't have much time to seek further information or support...or offer it.

The omnipresence of Facebook and social media has been something that I have been very slow to embrace.  I am not sure why some folks find it necessary to share photos of their lunch...when it is utterly mundane fare from Taco Bell. But, it is not all bad.  In the last 6 months I have stumbled into a private support group of similar "mutants" as we refer to ourselves.  And consequently, this rather Amish girl has become grateful to Mark Zuckerburg, for indirectly making possible these connections with fellow LFS patients and, by extension, this support.  

Talk among my LFS friends on this particular evening centered on the various reconstruction techniques and options after a mastectomy, with much advice being offered.  I must confess that the technical talk is all a bit beyond me, having zero experience with breast cancer, and in all hope, I should like to keep it that way.  But several things struck me.  First, should I ever find myself in Alabama, for example, I absolutely know who I would stop and have a drink with, knowing that all of my cancer and genetic jokes would be appreciated.  These ladies have a wicked sense of humor.

Second, if I found myself in California, I know who I would rely on for advice on hospitals or doctors. This group has a wealth of information and medical experience (so wish that were not the case). But, they are willing to share their personal trials in very generous ways, in order to help others find the solution that is right for them.  

 

Reconstruction, for example, while it might seem like an obvious choice if available, might not be right for some.  Or the timing might not work, given recovery requirements.  How it is achieved technically, if chosen, is varied as well...and makes a big difference.  These considerations can be sorted through, with folks who have a practical understanding of what it all means.  That sort of advice is invaluable.

With LFS, we have a host of considerations that others do not, and likely cannot fathom...in medical treatment, in family dynamics, in finances, insurance, life perspective...the ways that cancer invades your life is not so different from the way it can take over your body.  I really try to keep it in check (umm...as I blather on and on about it here).  I clearly have varying degrees of success with this. These ladies have similar understanding of this effort at balance, and I am grateful to them for their openness and honesty about all of the consequences.

Besides, in having them scattered across the world means that at 3 am, should I find myself awake and worried about something, someone is likely to be awake somewhere.  And support, understanding and reassurance is easier to reach for, when you know that you are not disturbing someone's sleep.  I have been glad on more than one occasion, that Hawaii has a 5 hour time difference.

I woke up Wednesday morning to hang Brent's antibiotic, thinking about a dear friend who was to have surgery that day.  I was hoping that she had clean margins and was praying for clear nodes. This was for her second episode of breast cancer, not relapse, but rather a different kind of breast cancer than her original, nearly 10 years ago.  Double primary...it makes me want to swear. Kind of a lot.  And she does not have LFS, incidentally, not that it even matters.

My own surgery had been scheduled for Thursday (as if I could afford the time for such recovery) I cancelled it when we thought that we would be in NYC for the summer.  My ovaries will keep for a bit longer, and my geneticist currently has some other tissue to work with for a while. I hope to keep her busy this fall with more samples, and come up with some answers for what I should be doing. 

But presently, I am just very happy to be back home.  I am glad to be with my family, and to step away from the hospital scene, as much as is possible, with a fridge stocked with bags of Vancomycin rather than bottles of summer Corona.  I am trying to have normal conversations, about other peoples vacations, or children's activities, remodeling projects, because our take on these subjects is a bit different:  We vacation at Ronald McDonald House, my daughter is at oncology camp this week, and our remodeling project this summer is in my son's hip. 

I find that I make OR reservations more often than dinner reservations these days.

We will get closer to normal, but just not this summer, apparently.