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.

Life-Work Balance for a Stay at Home Mom.

I am ready for the weekend.


Work has been busy.  I am in charge of two divisions: medical and domestics.  In the past several weeks, I have fairly handed over the reigns of the domestic division to Dan.  He, I should point out, has a J-O-B of his own, with drawings, and meetings and deadlines.  But, he has been pulling double duty, saint that he is, as I have fairly abandoned my domestic responsibilities.  This is because the medical division is hopping, unfortunately.


I had a business trip to NYC.  Our meeting was fantastic.  Dr. Healey was smiling and satisfied, which is most reassuring.  We chatted about a few things, and as we finished up and parted ways, we were told that Brent's next follow up would be in a year. We have never gone such a length of time between appointments, which is a solid victory.  Brent was fairly skipping on our way out.


We went to a movie in celebration.  By the time we returned to Ronald McDonald House a few hours later, my phone rang. University Hospitals was calling.  They found melanoma in the sentinel node on the left side. Brent needs more extensive surgery. And treatment. For a year.


Go ahead and swear, because I certainly want to.


As we travelled back to Ohio, our Angel Flight pilot chatted with me a bit while Brent snoozed in the back of the plane.  He told me a story about how pretty early in his career, he was very driven, but was cautioned by an older friend about the value of punching out and making family a priority.  This friend spent Christmases with the pilot, rather than with his own family, because, as he confessed, the kids grew to hate him.  It made quite an impression on the pilot, who sold one of his businesses and cut back on his hours, with absolutely no regrets.


So, my job has been busy this week: travel, paperwork, correspondence, research, phone calls....  I may have mentioned that I have not been terribly engaged prior to this trip, and rather distracted.  Dan, ever my rock, has been planning a very important birthday party.  Olivia turns 6 tomorrow, my favorite Valentine's gift.


I woke up this morning, and thought about all of the things that I needed to do, which is a lot. Dan has put together plans to make Olivia's birthday a special one.  Considering the fact that I missed it entirely 2 years ago, and only arrived in the evening for it last year (both times at MSKCC) I should be right on board with him, a partner in making it special.  I have been very busy with work, no different in some ways, than the friend of the pilot.  Granted, I am not driven in my 'medical job' by the desire for material things, but from Olivia's tender perspective, does it matter?


So, this morning, I snuggled with Liv as I woke her up for the last time as a five year old, giggling and teasing.  We took our time getting ready and I drove her to school.  When the kids get off of the bus today, I am going to punch out for two days to celebrate the gift of family, and particularly the gift of my youngest.


And I am very grateful for my first Valentine, who drives the train when I disappear either physically or emotionally.  Dan means the world to me, and to our family.  He has always had a good life-work balance. I keep finding my way back, because of him.

A moment of Thanks and the spirit of Giving

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

It is giving of yourself. 

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

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

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



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

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

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

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

 

Counting up the October blessings

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Walking in Manhattan

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

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

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

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

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

I never saw that coming.

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

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

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

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

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

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

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

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

I head back to RMH, up First Avenue.

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

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

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

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

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

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

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

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

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

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

We wait.

Trust from dizzying heights

Greetings from 7,000 feet.  It is beautiful today and Brent and I are on our way to NYC, courtesy of Angel Flight.  I cannot say enough how blessed we are to have this kind of help.  We are going to change planes in Williamsport rather than in University Park, so that another patient can get a ride home.  It is amazing to me, the coordinated generosity of so many pilots.   

With this bit of time, I thought that I might tell you about my plans.  I met with my OB on Thursday to talk about surgery.  He is putting in for pre approval from my insurance company, which I am hopeful will go through. (Although, if it doesn't, I have programmed my case manager's phone number into my phone...I have someone on the inside who might help me with the appeals process if need be). If denied, I will appeal.

I really, really like my OB, who delivered Lauren and Livvy.  I actually have a piece that I wrote some time ago, that I will post later about picking doctors.  I feel like I have to run it by both Drs. OB and and Ortho before I do, as I refer to them by name, and out of deep respect, would like their permission before I post it. But I digress.  

My point is, that I would really, really, really like to use my OB for the surgery...it would be our last hurrah together, as I will have no parts left for him to annually check when it is done.  I trust him, and well, he is my guy for such things.  Should insurance deny coverage, I would need to have surgery at UH, where incidentally, my guy does not have privileges.  I would have to use someone else.

Because, given that the Ramers are sort of the goose who laid the golden egg for UH, I would be in a better position to work out something financially with them for of all things, removing my eggs.  If I didn't have irony and snark, you might as well cut out my tongue as well, because I would have nothing left to say.  You have been warned...this is going downhill from here.

So, if I get my wish and have the surgery at Southwest, which is affiliated with UH, but not in fact owned by them, I will need to get my girl parts shipped across town.  Last time that I needed to do something like this (who ever needs to do something like this?!!) Dr. Peters, my kids oncologist, was kind enough to drive across town with a box of dry ice and swing by FEDEX on his way back to UH, sending one biopsy off to Toronto.  How's that for service above and beyond the call of duty?

As my local geneticist is taking the lead on this one, having developed an essay that will detect our p53 mutation to within 2%, international shipping will not required this time, thankfully. So, I need a local medical currier...which we are thinking might end up being Dan.  "Honey, can you pick up the dry cleaning, and drop off my ovaries?"  Seriously, who makes arrangements for the transport of their own organs, outside of their body?  

I need to be sure to get a doctors note for my dear husband, in the off chance that he gets pulled over.  (I know more than a couple of doctors...which one is the best for such a thing?)  Because "What is in the box?"  could be a very awkward question to answer, when it is in fact, pieces of your wife.  Probably should rework the phrasing of that answer.

In case you missed the memo, I have a weird life.

So, the actual surgery...  You will remember that I was looking to have multiple biopsies done.  I went in to this talk with my OB with a particular idea...kind of a buffet or smorgasbord of my organs...take a little sample of each while you are in the neighborhood.  So, after a little geography lesson...there is sort of the continental divide in you belly (diaphragm) which makes loads of things out of easy reach if you happen to be doing a pelvic surgery.  Damn. 

But, there is the liver and spleen in the area (ooh, goodie!). However, given their vascular nature, they have the tendency to bleed ...and not stop.  I was advised that this was a very bad idea. Usually, such biopsies are done with CT guidance, which is a bit more than 'just taking a bit while in the neighborhood.' 

I have said that I would never presume to tell a pilot how to fly or a surgeon how to cut. (Writing of a surgeon as sit next to a pilot)  While I really am committed to finding some answers, I am not wanton.  I do in fact listen.   I may be crazy, but I am not stupid.   But I was bitterly disappointed, nonetheless.  

Bowels will be biopsied by GI in a separate procedure, the details of which I will be sure to keep to myself, and for which you will thank me, heartily.

Which leaves my tubes and uterus.  

"Are you planning on having more children?"

Umm.. No.  (Thinking, I would remind you that you are taking out my ovaries....and we talked about this you when you tied my tubes several years ago)

With extreme patience, and a hint of irony, "Do you plan on carrying a child for someone else?" (In my spare time?  with my spare energy?  With my 44 year old parts and sketchy genetics hovering around in the background?  Not likely.)

At which point he explained that really the only thing that my uterus could bring to me in the future was cervical or uterine cancer.  He could biopsy them, but really, it makes infinite sense to remove them.   

Dan will need a bigger box.

As I left to schedule it, an opening was available for Thursday.  As in this Thursday.  I feel odd, having been anxious and prepared to do this surgery for 6 months now, but Brent is doing hyperbaric oxygen treatments every day....and this would be the day after we return from New York.  Seems like a lot, and so waiting until the next slot in June makes more sense.  We go in June at this point.

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Flight number two...chatting with our pilot, I learn that he is from Maryland and works for NIH.  I kid you not.  We exchange IRB stories, naturally.  

The weather has changed dramatically, and we fly in solid clouds, which I have never done before.   I think that he said to within 800 feet of the ground, which he preferred was much higher, naturally.  I had no idea, sitting next to him, how disorienting it could be.  You must completely rely on your instruments, as instinct will help you not at all.  I have no doubt as to how JFK Jr got into trouble, because what you feel and what the instruments tell you do not jibe.  If you are accustomed to following your instincts, this sort of flying is a recipe for disaster.  

I am trusting in the experience of this pilot.  I trust the experience of my doctor, and of the doctors that we are traveling to New York to see.  Hoping that we all get on the ground soon...and safely.