The Magical side of Drama

Months ago, Kiera and Lily joined a theatre ensemble called Packids.  It started last summer, Kiera expressed an interest in theatre, I looked locally for opportunities. I found PACK and they fortunately had started a nonprofit to nurture children in the performance arts- called PACKids. Kiera participated in their summer program which put on a production of Aristocats to showcase what they learned.  Kiera fell in love. She was giddy every day she got home.

I was worried. I had many preconceptions about the world of theatre and drama. I knew there were so many sides to drama. I disliked the preoccupation with pretense. I disliked the potential for rejection based on physical qualities. But as a realist- I decided to be open minded. Kiera wanted to audition for the next production. Pinkalicious. I found my niche among other parents- who seemed to be very different than what I expected. They were normal parents- helping their kids do what they loved.  I got art therapy helping paint sets. I saw the inner workings of theatre weren't much different than baseball or football or any other business- there was fundraising, there were personality clashes- there was drama. Anytime you have a deadline and a group of people- there will be drama.

Mid way through Pinkalicious, the group learned they were accepted to perform in Disneyland. I also learned that I had Stage 4 cancer. Here I was, breast cancer attacking my lungs and bones- surrounded by pink and drama. I could not have been any more out of my element. It was a welcome distraction. We were back in day at a time mode and I figured things would work themselves out. Before I knew it, the Disney performance was becoming a reality and we had to make decisions. Decisions that aren't easy normally- complicated by not knowing how I would feel, if I could travel. Not wanting to put down deposits and lose a bunch of money if things went south while we were trying to go east.

So we made decisions. We decided to look at it like a wonderful opportunity for a family vacation. Like anything else- how you approach it can make all the difference. We chose to try and be positive. And hope that it would all work out. So when Kiera came home rehearsal, after rehearsal grumpy and down- I began to wonder if this drama thing was going to work for us. I would hear Phil reciting over and over- leave the drama on the stage.  With 3 girls- we see our fair share of drama and them trying to find their way. I constantly try to find the balance between real and perceived and the magic of make believe. Sometimes when faced with the bleak realities of cancer- you need nothing more than some faith, trust, and fairy dust. Kiera was seeing that Neverland had some shadows.

Kiera and I sat and had a long talk. We talked about "paying dues", something I was recently told we just had to do. There seems to be a lot of paying dues in theatre. There is a lot of paying dues in life. It sucks when your perspective changes because of loss, experience, cancer. I've paid more flipping cancer dues than most humans and those dues bought me a role in life.  It sucks when your priorities change and everyone around you is consumed by trivial things that you only wish could fit on your list. But then you smile. And it was in the middle of this talk it occurred to me. Cancer taught me to be an actress years ago. It taught me to fake it til you make it. It taught me sometimes you just have to plaster on a smile and make it the most believable smile ever- filled with words like- I'm fine, I don't need anything, I feel good. And pretty soon the smiles feel real and lead to laughs and sometimes you laugh until you cry and then you just plaster on that smile again.

 Life is not fair. There will be roles that you deserve that go to someone else. There will be roles you get because someone just wants something from you.  There will be lows and highs and great journeys in between. But each role prepares you for the next role. Life experiences that sucked away opportunities will prepare you for THE perfect opportunity and you will have the insight to recognize it and not wonder if. We are to the point in my journey that I cannot DO this FOR you.  I simply do not have the energy to fundraise or make this easier. I cannot be the class mom right now and garner all the connections to make this journey easier for you. But I can cheer you on and believe in you and know you will do it because you love it.  I will love you no matter what. If you fall off the stage, sing off key, miss a step. I will help you up, take you to voice lessons and tape rehearsals for you to practice later- knowing full well the routine will change 5 more times before the performance. I will help when I can because the day may come too soon that I won't be able to help at all. You will have to work hard and you will be rejected and you will get your turn in the spotlight. And when it stops being fun, IF it stops being fun- then you move on to the next great journey because the things you learn now will help you then. We hug through tears. Our moment of introspection needs to be cut short- there is too much to do to get this drama show on the road.

The weekend before we leave, is drill weekend. Despite foregoing one of the chemo meds the week before- with hopes that I would feel better for our vacation- I was exhausted and my head hurt and my throat was scratchy. By Sunday a fever started. There was too much to do and between checks by my neighbor and texts to one of my mutants for advice- my fever hit the point I had to call the oncology nurse. She was amazing and did everything she could to help me avoid the ER. There were several calls, several attempts to bring the fever down- each call with a new fever limit that I could not go beyond before going to the ER. When it spiked to 102.3, my neighbor packed me up and got me ready for an afternoon in the ER. I called the onc nurse, she told me if I wasn't in the isolation room in 15 minutes to call her.  I called Phil, who was really excited to be leaving a weekend of work for the ER. He wanted to know if I could wait until he got home to assess me and I just said I didn't care if he went home and changed but I was on the way to the ER.  This sometimes happens when you don't communicate how bad things are. Kiera meets me downstairs- the little girls had spent the morning next door and she looks terrified. Phillip keeps trying to hug me and I keep telling to back off the sick momma. As I leave, I tell Kiera to stop worrying- she was going to Disney no matter what. The thought of missing them perform just about overwhelmed me- so it is not an option.

We get to the ER and my neighbor hands me off to Phil. He hugs me and says- damn you are hot- which under any other circumstances I would have really really appreciated. The waiting room is a ghost town. This is unheard of. I think for a minute they must have moved the waiting room because I've never seen it empty so this cannot be it. Then I realize my angels must be looking out for me. Phil sits me down and attempts to check me in knowing little of the day's progression to this point except that I and chemo a week ago and I was damn hot. Yep- I was 102.8 by the time they took my temp in triage- which didn't seem possible considering I think my neighbor had every single vent trained on me and set to arctic blast.  That buys you a quick trip into isolation. yaaay. Nurses flit in and out and supply us with caps and masks. Phil and I laugh at the ridiculousness of the caps- because we have no HAIR. Protocol the nurse tells us.  As she gets the supplies ready to access my port- another nurse comes in and starts yelling out steps as the first nurse repeats what she says. I pull off a mask and ask if she's ever done this before. I don't want to offend her but my mutant friends have horror ER stories and I'm pretty sure one told me to never ever let them do it. She laughs and explains they have a new protocol that requires them to do this- she's accessed hundreds of ports. I felt better until she accessed my port and it was still sticking out. Phil kept rolling with the one liners. He finally explained to them I really was sick- usually I am much funnier in the hospital.

5 hours later, some nasty potassium drink, a bunch of bloodwork, liters of fluid - the culture comes back- there is something growing, most likely strep. I get a bottle of antibiotics and potassium and am told to report to my oncologist in the morning. The waiting room is now packed.  Not exactly how we planned it- but we were going to be there the next day for my scans anyway- which apparently strep does not get you out of.  The only thing I was banking on was feeling so crappy that I would be able to sleep through it.  That and ativan. Lots of ativan. I instruct my oncologist that I do not want to know the results of the scans while we were at Disney- that we could just meet when I got back. What if it's good? Nope- not thinking about it until we get back. I was going on chemo vacation. Not worrying whether or not tumors were shrinking or growing or which ones were and which ones weren't.

We were packing like mad people the next day. Not giving the girls' bags the usual careful inspection we do- mostly worried about costumes and medications- which require an entire carry on. Yet during the process I get a call from the hospital. I don't want to answer it- but have to since the cultures determine which antibiotic is best. Its my nurse. Strep was confirmed, I'm good to go with the antibiotics I'm on and she knows I don't want to know about scan but she wanted me to know there was a complete response. Have a good trip kiddo, I'll see you when you get back.

My eyes well up. Jen usually asks questions like- how complete- what does complete mean to you- because my view of complete may be different. Complete where- complete how- did you see the completeness of the response? What about the bones? Does it just mean everything shrunk? But Jen put away the questions- it was good enough news she had to tell me. It's a relief and I decide to not think about it until we return. Right now we have to focus on getting team Mallory off the rock.


The Mallory clan is a riot in TSA. Between the diabetic supplies, insulin, needles, sites, syringes, glucagon, test strips, extra sugars and Lily's meds and emergency shots and now my meds- it takes a small suitcase. I am being pat down- I remember to point out that I have a port and a prosthetic breast.  I look over and there seems to be problems with the kids. We expect Phillip to get caught up because of the pump- it is a fairly recognizable device now days- but off all the things TSA is briefed on- insulin pumps seem to confound them. When I am done, I rejoin the suspects.  Apparently Lily and Kiera both had packed scissors in their carry ons. Scissors. In their carry ons.

Phil- why on earth would you pack scissors?
Kiera- I though I might do some crafting.
Phil- Crafting? You are doing 2 performances and have Disneyland at your disposal and you thought you might take a break for crafting?
Kiera- yeah. That and toys usually have to be cut out of boxes and Lily hates tags on clothes.
Jen- That is actually a good point. Next time pack them in suitcase.

We make it to California. All meds, Mallory's and scissors in tact. Every trip- we have a child that acts out. Phil has a great lecture he gives about being lucky to be there. I feel lucky to be there. I feel so lucky to be with my family, to be making the trip together and getting to see the girls perform. No one fell off the stage. I didn't notice any missed keys or missed steps. It was probably because my eyes were completely mist- over. This what life is about. Life has Drama. We need to know the difference between real and perceived. The difference between what is true and make believe. And sometimes a little make believe takes you away from all the tough stuff- if only for a half an hour. That is what Disney is about- smiling and carrying on. There are not employees- there are Cast Members. The icky stuff stays below the park in the tunnels and behind the scenes. Everything else is magic. That is what theatre is about. Sometime you have to work at smiling- whether its for an audience or a friend and in return you may get applause, or a smile or a laugh. Sometime you get a tear or a shout. It depends on what kind of drama you choose.

I am so proud of Kiera and Lily- despite only a few months of paying dues- they did remarkably well! They had fun. They smiled. Later- I reviewed my pictures- mostly out of focus and not very good. I was sad for a second but realized that they were blurry either because of the tears welled up in my eyes or because I was watching and snapping pictures. I was present. I saw each girl pick a person in the audience to smile at and that person was me. And they will always be able to say- remember when I performed at Disneyland. And we will always remember the magical week we had together-          smiling and laughing together.
                                          That was the Magical side of Drama.

A Team Effort

I am very independent. I am learning to work within my limited health and it's not easy. BUT the alternative is to give up and that's not an option. Let me be clear- choosing not to do treatment is not giving up. Giving up is merely saying it's over and losing hope.  There's always hope, even when all the odds are stacked against you. I am one person and if my journey makes someone else's journey easier- then it is a success. If I give my children the foundation and tools to deal with the craziness that is life- then I've won a battle.

I've always known that it takes a team to make a family work. Different teams have different game plans- and what works for one team may absolutely NOT work for another- but the key is finding what works. In the past- I handled most of the kids' doctors appointments with support from Phil. Since the newest cancer development, he's taken on a lot of the appointments- either going with me or taking the kids.  It's tough because I feel like I'm being pushed out of the loop and Phil swears he's doing it because my solo job right now is to kill cancer.  He taught the kids one of his famous concepts- it is important to kill something every day, even tiny to maintain proficiency.  This always cracks me up coming from the guy whose call sign is BUDDHA.  And before any activist friends get their robes in a bunch-  sometimes he just has the kids wash their hands- because after all we are killing germs when we do that. Anymore I'm usually told to go sit and kill cancer.  Last week Lily chased a fly around the kitchen for a few minutes then slammed her hand down on the counter. Her eyes got wide- what do I do? I can feel it wiggling. Phil placed his hand on hers and slammed down- you maintain proficiency.  Kiera bounced up the stairs last night after a late rehearsal and declared she meet proficiency today in the garage and that cockroach was huge. I think more proficiency needs to be directed at the weeds in the yard. Yet in our world- cancer will be our enemy and it is important to try and maintain perspective- and proficiency in battle.

Monday was chemo lite. A friend asked last night if Phil goes to every single treatment. Yes. I am lucky enough to be on a once every 3 week schedule and we are hope hope hoping it's working- because it's manageable. I am lucky enough to have my best friend beside me. I am lucky because I don't have to ask him to be there- there is no other place he would rather be. He is taking a more active role in even my treatment plan which is funny because I still know waaaaay more than he does- but he does have a good perspective.   Saturday we sat in the car on the way to soccer and Phil says- I think we should skip the abraxane this time. We are quality of life people and you need a break.

A lot of it is that we are going to Disneyland(I KNOW- major excitement- Lily and Kiera are part of a performance ensemble called PACKids that got accepted to perform and do workshops at the big Mouse House) Phil doesn't want me feeling crappy because that will make everyone feel crappy. So we ponder and worry and know that I am due for scans and my oncologist said a break was fine- that the protocol calls for scans after 6 rounds and evaluation. So we agree- it might be nice for me not to feel entirely exhausted and icky for the big trip.  Even little decisions are hard. There are no right or wrong answers. Most of it is just trying to fight your way through the jungle and do the best you can. I don't want to feel crappy yet I don't want to stop if its keeping the monster at bay. I want a break, but I don't want to give up ground.  The funny thing is- the hemming and hawing is all about one of the 4 meds I get regularly- it just happens to be the one that makes me feel the worst. So we decide to take a break. But that's why we are a team- Phil is looking out for me- for us and we face this stuff together- I couldn't imagine it any other way.

In the same respect I've had women say they would have succumbed to cancer years ago if they had to sit in the chemo bay with their husband. The support job is a tough one and not everyone is cut out for it. We need to know our limits as patients and as supporters. And my wonderful supporter took a trip down to nuclear medicine to schedule my PET scan while I was killing cancer cells in the chemo bay. Its a good thing I take anti anxiety meds before hand because just thinking about scans makes my blood pressure sky rocket.  It is a delicate balance trying to fit the urgency of various appointments into the necessity of our routine. A balance between taking and picking kids up from school and activities and what they are willing to miss for their appointments. It's one of the reasons foundations like Make A Wish are such a godsend- kids in families with medical challenges miss out on a lot. We try so hard to balance- but it is exhausting and there are people who just don't understand. Yet for every person or 5 that doesn't, there is someone who tries to and helps lighten the load- and those are rare beautiful gems.

Some weeks, like this week are entirely centered around maintaining the current- if slightly dysfunctional health of our little family. It may be little and broken, but it ours.  Monday was chemo. We usually get there around 8:30 after dropping the kids off- we were a little early because my neighbor offered to take the girls to school. I check in, get bloodwork and then we usually wait for results- while waiting they access my port and give me some fluids.  It usually takes a couple of hours to infuse the 3 different chemos(this time only 2) and then I get a shot in my arm to keep my bones from crumbling.  And then we stop and bring home soup or salad for lunch and the kids get home from school and the lively chaos ensues. Yet this Monday there was a package waiting for me when we got home!!! It was perfect timing and made for a perfect afternoon of wrangling monkeys. Our TEAM MALLORY shirts arrived!

Tuesday was an appointment with my naturopathic doctor. I highly recommend that anyone facing medical issues go see a naturopath. If only there were true integrated medicine- but that's a post for another time. Somehow I got the appointment wrong. Oh I know how- Phil scheduled an appointment for Lil P - so we could get educated on his new insulin pump for Tuesday. Yet he had an exam on tuesday and I had my appointment and I mistook the time for his appointment as mine even though his appointment got rescheduled for Wednesday. The up side to being early to my naturopath appointment was this....

30 minutes to sit and listen to waves and breath fresh air.  I try to plan for this- it just rarely happens. Because most weeks that I have appointments, I am behind on everything else as well. But this 30 minutes was heaven. 

Wednesday was an appointment in gyn to discuss removal of lady bits. The 30 minutes of bliss Tuesday was overshadowed by the nightmare that is parking at Tripler. I was over 30 minutes early for this appointment and still was late because there was no parking. I'm so glad there are 50 pregnant stork parking spots and zero oncology spots. But I digress.  I don't care to discuss details at this time of the lady bits or the plan for their eviction- because well- the decision is still being made and depends on the PET scan which is next Monday. After this appointment- I bop home, grab a light lunch and the boy child and head back to Spa Tripler for his appointment. There is always a learning curve with new toys and this one will be no different. 

So he will have 2 sites attached to him- one that is connected to a pump of insulin and another that will keep an eye on his blood glucose, called a continuous glucose monitor. We have already experienced the troubles of an active teen and sites being knocked off so- we are going to have to find something that works- we always do. But again- another up side to a busy day of doctory stuff was some quality time with this guy!

And although it sucks sometimes because we miss out on the boring and the fun and a lot of things that just don't fit into our schedule- we find the good in what we have. I am grateful to all the volunteer team members who help us get where we need to be and make this work.  Our team works with what we have and will keep trying to maintain proficiency and win the war- one battle at a time. 

Rudy's Hot Dogs- A Family Tradition

About a week ago, Phil and I were on rare walk together during daylight.  As we filled each other in on daily events he mentioned casually that the Toledo Air National Guard was participating in their big exercise coming up.

Oh Really? Says Jen. And will the Toledo Guard be bringing Jen some of the World Famous Rudy's Hot Dog Sauce?

Um I don't know say Phil. aka Buddha, Oh did I tell you they were filming for a newscast at work too?

See the funny thing here is that Phil holds a very special place in his heart for the media.  And it's not a good place. He usually politely declines to be present for most media opportunities. He likes to stay off the grid.  He said he asked specifically not to be in any close ups for the newscast. Yet somehow the grid finds him. I find it hysterical that for the first 3 years of our relationship I had to endure hundreds of mock interviews regarding anything from sports events, to test performance to who had the best ever Dorito Crunch. The kid was a natural. So I wasn't surprised a few years later after a parachute jump into the Tostitos Fiesta Bowl- to see a photo of young Phil being interviewed for the local TV station.  As it turns out- one of the guys told them he was a local boy as a joke- so he finally got his big interview. Years later after his first deployment- he was wrangled again by a local crew for an interview.  And then again on the day they returned.  I think at some point he filled his 15 minutes of fame and was happy to share the fun with others who seemed to relish it more. Since then he generally finds a way to be anywhere but in front of a news cast or camera.  That is something we both share- neither one of us particularly likes to be in the spotlight- it just feels awkward.


My dad was the complete opposite. He could walk into the room and command it. Lily has that gift. My dad had a gift for making horrible situations laughable and for really testing the boundaries. He would do really quirky things just to make us smile. Or just because he could. One of these quirks was the randomness of gifts he brought home from frequent business trips back and forth from the Toledo office.   We moved to Colorado in the late 80's from Ohio. Toledo had been our families' home for generations.  It was a tough adjustment until we realized how much bigger the world was than Toledo. Yet Toledo would forever hold a certain place in our hearts with a tattered and well loved label- home.

Toledo was supposed to be a big city and it tried for years to find it's niche- yet somehow never did. It was a port town with major rail connections when air travel became big. Yet somehow- like the Connolly's- it just keeps plugging along, trying to find a way.  As a child- the only big thing that I knew came out of Toledo was Klinger from M*A*S*H. Of Course later, I would see pieces of Toledo everywhere-  A JEEP  always reminded me of the exit to Grandma Connolly's house- off of Willy's Parkway.  When we would go to Grandma's- often times we would stop and Pick up Rudy's Hot Dogs.  We would stand in line at this Toledo institution and order as many dogs as we thought we could stomach. We would down them with red Fanta while perched under the least scary deer or elk head mounted above each table.  Rudy's are not your average Coney Dog and probably could not be marketed effectively to a broad market, but they were a tradition.

After we moved to Colorado- it was one of the gastronomic delicacies we missed. Mom tried pretty convincingly to replicate the sauce and even steamed the buns to the point of sogginess- because that's how it's done. But it just isn't the same. So one trip to Toledo dad called to make sure we'd be home for dinner. A lot of times we'd pick him up from the airport and go to dinner- but everyone's schedules were busier. When he walked in the house we could smell it- a waft of home- the meaty spicy call of Rudy's Hot Dogs.  Those were the tastiest, most well travelled hot dogs we'd had in years.  As the story went- he just wanted to bring us a taste of home. Mom later hypothesized that he may have just been planning ahead for a long flight and that he never much cared for the airline food. Regardless of inspiration or reason- he waited for Rudy's to open- had them pack up 2 dozen hot dogs, quadruple bag and insulate them, raced to the airport- hand carried them on a puddle jumper to Detroit- made the connection to Denver- all the while fending off fellow hungry passengers who identified the familiar scent.

A couple of years ago, I took the kids home.  We drove by both Grandma's houses on our way to a friend's house for lunch.  I couldn't pass up the Rudy's. Even though we were on our way to lunch. We ran inside to get a snack. I let them know- it was just a snack. The kids marveled at the stuffed venison while I ordered- taking notice they now sold cans of the famous sauce. Toledo still has the small town feel and I did get an approving nod when I ordered a dozen cans to go with a couple of hot dogs and a Fanta.  I mean after all I was no longer from around there- but I could still take some home with me. The kids, now addicted to Rudy's would down 3-4 at a time and requested them for every meal after that.

We had Rudy's A LOT that trip. So when Phil mentioned Rudy's might be on the way soon- Bella and Lily immediately perked up. Presents? Rudy's. You mean the place where we went that one time that you only let us have half a hot dog?

Yes. The same place that we went 4 other times that you had like 3 hot dogs.

Yeah we like those.

This morning, bright and early I get a call from my neighbor.  Your husband was on the news! I don't generally watch the local news because I know it's going to be 82 degrees, there will be traffic, there are waves somewhere around the island and somebody did something that was stupid and got arrested because it's an island- where are they gonna go?  I laugh hysterically because I know Phil will be mortified. I then run over to my neighbor's house to witness the recorded spectacle.  I have to say he looks pretty handsome and like my Buddha. And he probably wouldn't have gotten any screen time had he not been so adamant about not being on screen.


Hawaii News Now - KGMB and KHNL

HNN-Hawaii Air National Guard Aerial War Games
As I watched the story,  my phone vibrates.  I look down to find that Thanks to Toledo Air National Guard- the Rudy's tradition continues! And it feels kinda cool to be responsible for adding another big stamp to the Rudy's Passport!

Love in the Time of Cancer

Today is our 15th Wedding Anniversary. A week ago I was feeling very low. Phil bought us Lion King tickets for our anniversary months ago and I was at a loss for energy- creative or physical to come up with an extraordinary gift for the man who is the most wonderful person I have ever met.  I lamented to one of my favorite mutants through tears and kleenex. Her wise and experienced response-

This is love and cancer Jen. Sometimes him knowing you love him and adore him, is enough. You can't give more than you have. 

But 15 years ago, we stood in my mother's living room and I professed to give him everything, to share everything, to be everything together.  Sickness, health, richer, poorer. So I racked my brain and my heart- which I had promised him completely many years before that and every day since then.

There were years where uncertainty clouded our dreams and our time. This may be one of those years. There were times that challenged our hearts and our resources. Yet through those times we never took for granted each other. Through the rough patches we always have and still choose to create our happiness.

There were times when we were very young and in love that the world seemed opposed to us. That no one understood. Yet somehow on a cold snowy night, we sat in a dark kitchen with a box of ritz and some cheez whiz and through tears mended our hearts and placed another brick in our foundation. Years later when there was not enough money or energy, when times got rough- really rough- out would come the box of Ritz and Cheese Whiz. And we would sit on the floor and lay another brick or two- because although the storm may shatter one part of the house we still had that foundation and we would think back to the other times we had those moments and know that there were so many good times between and there would be again.

Every year we profess no gifts. And every year there are gifts. Whether it's a card or a memory- there would have to be a gift. I thought of the good times and my role as the historian of the family and knew my gift was that. Compiling all of those happy times. I knew what I could give with the energy I had.  SO I sat and I gathered and I collected our memories. I cried tears in longing for the easier times and laughed at how happy we've been. I cherish the memories and the life we've built together. As I fussed with the new computer and forged my way into a new era- I completed the project just as he returned home.

And just as he professed no gifts- he walked in with a bag and what was inside that bag may have been the best gift I could have ever asked for or wanted. The books may say the 15th Anniversary is Crystal - but I know different because there is something more precious than that.

So we sat and we placed another brick on the foundation and found comfort in just being together as we remembered all the times that led us here.  After all sometimes all you need is love in the time of cancer. 

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Mallory Housekeeping

Ahhh housekeeping. Long and boring- much effort to keep up with what has become our routine medical housekeeping. From the delightful ladies who take care of your room on vacation to the snarky joke every time there is a knock at the door, bonk chica wow wow- but I didn't order any housekeeping to the term describing taking care of basic procedures of an operating system.

The month of January was a lot of housekeeping for our family. We actually hired a housecleaning service. This brings me joy. It is bittersweet as I really am sad that keeping up with the housework is so taxing- BUT I never really enjoyed it so that is a pretty easy task to hand over. I am so grateful for those who have pledged support to our family and please know that your donations are going towards something that makes my life so much easier- and cleaner!

We had many appointments to keep up with all of our various medical conditions and well as some drama and paperwork surrounding the school situation and Lily. It never ceases to amaze me how much of policy is steeped in fear of litigation rather than the common sense best interests of people.


Jen's Update.  We met with my oncologist in January and again today. As we had figured- my course of chemotherapy is continuous. Although we may reach a point where I choose to take a break, that break would really mean skipping a cycle of the harshest drug, abraxane. It would be a break to recover from side effects and hopefully get some energy back and feel better if only temporary. After watching how horribly sick Lily and others have gotten from nastier chemos, I feel like it is not my place to complain. All I can say is that the fatigue is real and limiting. The GI effects are gross and also limiting but I'm learning to work within that. The pains so far are temporary.  When these effects become too much of a burden on me and my family, we will discuss options. It is a balance. It is an unchartered path. Chemo and Cancer Choose your own adventure.  A balance of side effects and dying. I would be lying if I said I hadn't been horribly down lately. I have been working hard at redefining my goals and perception of our new reality.  Sometime you have to just bite the bullet and say- yeah it sucks but this might be the best it ever gets- this is our new normal and learn to function within it.  There were mornings I burnt the bacon. broke the bowl. grated my thumb in the queso. Phil always said I put a little something special in my dishes- I don't think that's exactly what he had in mind. I miss cooking.  I miss the ability to cook. The ability to keep track of time and multitask and not constantly fumble things that I try to grab. Phil jumps when I grab sharp objects. The kids run to grab me covered cups.  I miss feeling good. But know this is the new good. I miss being able to whip out a blog post and think clearly. SO I take my time and get to it when I can. I hate that things are so hard. But am glad that they still ARE.

Today we talked scans and quantifying tumor burden. It is terrifying. I will do another PET/CT  soon which is an absurd amount of radiation. Yet it is the best way to quantify and gauge if the chemo is working and to what degree my tumors are responding or not. I swear I'll remember to get printouts this time, but know my memory is less reliable than the queso at this point. We will do another ECHO to make sure there isn't any heart damage developing. And I am going to talk with a GYN Oncologist to discuss the removal of the run down baby factory machinery. Fact is I'm not using it. The bits are rusting and the rust is polluting the groundwater. Although ovarian cancer is not huge in LFS, it has been seen and since I'm not using them- it may be best that they go. With 4 c-sections under my belt- the poor uterus has seen a lot of trauma and may rebel with rogue cells at any time. I am comfortable with removing them both and they produce estrogen that can feed the very cancer I am making myself sick trying to fight.  And with that we trade one set of side effects for another. I don't want to have another surgery and right now it is tough to plan. SO we opted today for a shot that will stop my ovaries until we can plan the surgery. Without getting into too much gritty detail- most women go into menopause with chemo. I did not. I have always been fertile and obviously the garden was not going to die without a fight. It makes me nervous(and doubly miserable every cycle) so I would rather not stress that my body is producing too much estrogen and feeding tumors.

Jen In a nutshell- Keep Calm and Chemo On,  check on heart, schedule hysterectomy around chemo and life. 


Update on Phillip- Phillip joined the wrestling team at the beginning of the year- I have a great post on that I might get around to finishing some day. The activity is good for him but raises issues of weight class which I am NOT a fan of. He was not doing the best he could with blood sugar management for his diabetes. A dear friend - also a doctor- assured me that she's seen many a diabetic 14 year old who uses blood sugars as their control item. That's my problem- I would like him to CONTROL it. It's not out of control, it's just not where it needs to be and I need it to be better because I just can't worry about him, but I do and I will always.  But before his endocrine appointments we go over his numbers and talk about how we can do better. I plug the dongle in- and yes that is the official term and adequately describes it's uselessness- and try to download his data. Nothing. I look at his glucometer and can only find some readings from December. There's a hole in the screen and black lines across it. He is tasked with manually recording his glucose readings- his pump should keep track of his insulin intake. BUT the battery cap keeps falling off that. Add to housekeeping items- discussion of new pump.

Phil arranged to take Lily and Phillip to their conglomerate of appointments for a couple reasons. 1) they are a stress for me and he's wonderful and trying to decrease my stress and 2) hospitals are germ factories and a little infection or cold could knock me out. I have to admit the thought of a cold in my glittery tumor filled chest is frightening.  Phillip's A1C(measure of glucose bound to hemoglobin- essentially a 3 month idea of blood glucose averages. ) is creeping up and we need him to get that back under control. There's a new pump system with medtronic- they call it an artificial pancreas- which any diabetic will tell you- it is NOT- BUT it is one step closer to closing the loop for this special population. It uses the same pump to monitor blood glucose and insulin. Unfortunately there are 2 sites- so he will have to wear two different walnut sized patches- one that monitors his blood sugar(and can be set to turn the pump off if his blood sugar drops ) and one that delivers insulin.  Because Phillip is 14 and wants to be normal- he lets his blood sugar run high for wrestling. This means he doesn't give himself enough insulin. This is a problem- because how can he get bigger and stronger if energy is floating around in his blood stream and can't feed his cells? Don't even get me started on the carcinogenic implications of free floating sugar...he's heard it from me and it may be harsh but it is a mutant reality.  If he is old enough to clash his violent little clans or play death con 89 on wii- he can readily understand future implications of mismanaging his sugars.

Blah blah Boy Nutshell- Keep Calm and Manage Blood sugars. Phillip will be trying out a new pump soon. He is doing well for a 14 year old, even though we would like to see better control of his diabetes. His grades are excellent and his piano talent is phenomenal.

Miss Lily Monkey Update- Spunky Monkey is very smart and knew her appointments were coming. We had a check up, a bone age,  a 24 hour urine catch (good times to be had by all- it measures certain hormones in her urine to tell us if she is having normal hormonal development of excessive hormones that might mean possible oncology issue) an MRI and a stimulation test to see if her remaining little adrenal gland is still trying to be the lil adrenal gland that could. She is a little rockstar. And when she wears her hearing aids she is a not tone deaf little rockstar. Yet Bella is completely tone deaf so we really cannot blame the chemo for everything.   Lily is managing her fears of getting poked and doesn't use any numbing cream or patches- as those annoy her more than the stick. Our nurse is awesome- and does great despite her own personal fear of needles. I often wonder what kind of person becomes a diabetes educator/nurse when they are terrified of needles. Well it's someone who is strong and overcomes fears- which is the exact person I like for the job.  Lily also tackled another MRI without sedation and the tech said she did so well he thinks she can do the full body MRI in July on her own. I hate that my kids are having to master these routines- but so proud of them for taking it in stride.

 All in all the news was good. Her bone age is advanced still- due to the excess hormones she had from the tumors- she will always probably track a bit older. Our endo who I trust completely is not concerned. The MRI of her abdomen came back unremarkable, nothing of concern- NED- oh dear dear friend NED. The stimulation test was the same as last time- meaning her adrenal gland has a very little amount of activity and we cannot trust it- yet. We will keep watching it, but for now this means she remains on daily hydrocortisone meds and we will always have to watch her with sickness or injury.  Her other levels are all appropriate and no cause for worry. She is a big girl and physically advanced, but she is healthy and doing well. For this we are extremely grateful.

Monkey Nutshell- Keep Calm and Monkey On. Lily is doing really really well. SO yay! Grades are good, school environment is managed. She loves singing and dancing with PACK.  She recently started piano lessons and may someday give Phillip a run for his money. 

Kiera Tweennuts- Keep Calm and Drama On. Kiera had straight A's last semester and made Principal's list. She loves performing. She is going through the growing pains of her age and we all feel the aftershocks- but she is a remarkable young lady and has an amazing future. 

Bella Boo broke the Nutshell- Keep Calm and Be Boo -a- rific. She is a spunky lil one. She is doing well in school and will do fabulous in school when she takes her time. Can hardly criticize her feelings of urgency- although sometimes we just need to slow down and get er done. She is in soccer and LOVES it. She also started piano and is trying to teach herself 'Let it Go' from Frozen.  Phillip may have gotten all the talent there- but she loves it which makes her a bundle of fun to watch.  She has a wisdom and empathy that really brightens my days and she often will say little things to me that break my heart and mend it all at once.  Yesterday after chemo she hugged me and told me I was really really brave and strong for going through all of it. 

Sometimes when you are cleaning house- you stop and realize how much better everything feels when it's clean. Sometimes you are exhausted from the effort and wonder if it's worth it. Sometimes you find trouble buried under the dirt. Either way- we've learned that a little routine housekeeping goes a long way for prevention.

Fortunate Fortunes

Years ago, eating at Panda Express after a scan or a tough clinic visit became a routine for Miss Lily and the rest of the mini mutant monkeys. When Panda opened down the road- there was much celebration of fortune. We dreamed dreams of fluffy orange chicken clouds and floated along rivers of noodles. We have become fortune cookie officianados. There are rules over who gets what cookie and no one ever wants the broken one. I've started taking mercy on the broken ones- they didn't mean to get broken and it doesn't change their fortune. The fortune is actually easier to get to and I'm old enough to know I've cracked open quite a few cookies.  Sometimes the fortunes are simple statement of fact- your opportunities are many or you will soon go on a long journey.

You are guided by silent love and friendship around you.

Fortunes like life are what you make them into. Take any statement and you can turn it into a mantra, a curse or a dream based on what power you give to it. As long as you realize the true fortune is in the moment and inside you. The rest is just dessert.

This was one I got after my first chemo.  Ah the ironic fortune is one of my favorite kinds. Yet fortune, like friendship has a way of being there when you need it. Telling you the truths you may not believe. Or giving you a bit of hope to reach for. Or for the times you just need a laugh.

This was Phil's fortune on his very first field trip as chaperone for Lily's class adventure to Chinatown for Chinese New Year. The contemplative fortune. Phil texts this to me and I spent a half an hour wondering what problem he chose to signify and if he could find understanding. Can we ever truly understand the great problems that mar our path? Later I brought up the fortune wondering if he was ready to talk about cancer and life and the uncertain future. I asked if he found understanding. He said no- the problem was the waitress didn't listen as they were boxing up leftovers so he ended up with a lifetime supply of fried rice and not nearly enough broccoli beef. Sometimes you can't stop to contemplate. Sometimes you just have to keep on keeping on.

The next night I am trying to find balance. Phil was at a funeral for a former boss who passed suddenly. Phillip has wrestling, Bella has soccer and Kiera has science fair awards and all overlap. I leave Phillip to his own devices, pawn Lily and Bella off on my sister in law and take Kiera to her awards. On the way we stop for a quick bite. I ate little, unsure of how my iron constitution might powerfully and physically betray me. I grab a fortune cookie, hoping to find some lighthearted introspection and this is what I read....

I laugh and show Kiera. I wonder if I am going to have to perform the heimlich she laughs so hard. I think you got the wrong one she says. I think so too for a minute. Then I remember how fortunate I am. Length is not always measured in minutes, it can be measured in feet or miles. Perhaps length is relative. Perhaps it's not the size of the fortune but how you use it. Perhaps the fact is we just don't know. Whether this fortune is statement of fact, ironic, or contemplative - we will just have to wait and see.  Hopefully it will be a long wait.

Team Mallory

Right after I started treatment, my good friend Gina- from her remote location- sent me an email asking if she could help create a T-shirt as a fundraiser for our family. I've known Gina for a lot of years and she is a kind, thoughtful person. Of course my gut reaction was- OH Dear God No. But I decided to heed my mutant friends' advice to allow people to help me and took a moment to think on it. I like Tshirts. I wear Tshirts. Phil likes Tshirts. He wears tshirts. The kids are constantly growing out of their Tshirts. We have Tshirts from squadrons, from trips, from sports and now theatre. So why not? 

I talk to Phil about it, knowing full well his reaction is going to be- OH Dear God NO. I was not prepared for the veil of despair that came over his face. I expected the adamant proud reaction- we are fine. I jumped on the defensive and explained we needed to let people who love us help and the majority of our family and friends are over the ocean and cannot prepare a meal or run the kids to school and want to help. At least that's what people keep telling me. He simply said- It's not the T-shirt. I don't want to be the family that has a Tshirt because I don't want it to be that bad. I'm not ready for it to be that bad. 

I understand the panic. The tough realization. I hate that I ultimately am the cause of pain for him. That there is not much we can do to change the course we are on. A course of limited time.  When my brother Bob got sick there was no time. No time to Make a Wish much less have it granted. Barely enough time to say goodbye. Some of the toughest parts are the unknowns. But I remind myself, no one knows. We were told maybe 5 years with Lily. You just don't know. We have some key information that changes the way we play. Perhaps it's time to let our friends play along side us. So I sit down and try to think of what I would want on a Tshirt? That wasn't swearing associated with genetics....

When we joined the Air Force fighter community years and years ago, I made many friends- some by chance, some by design.  It's a family in so many ways. Orders throw you together- but choice keeps you together over time.  A friend, who both she and her husband outranked mine by several years taught me that friendship and respect know no rank. Long before Edward or Jacob became the gold standard of teaming up-she referred to every family as a Team. She was kind to everyone and taught us most success comes from working as a team. I embraced this approach and welcomed every letter and every card that greeted us over the years with her signature address- 

TEAM MALLORY. 

A few years after moving to Hawaii, I faced the challenge most stay at home moms face- what is my purpose? Is this enough? Meanwhile my mom felt further away from each milestone for the kids and I tried to find a way to bridge that gap with a new technology- blogging.  The kids were monkeys in every way- and it became Monkeying Around. As life and technology seem to do- all this changed and grew when Lily was diagnosed with 2 cancers- one of which had and extremely poor prognosis. Entries were no longer happenstance potty training forays- they were a lifeline- a way of healing and sharing the heartbreak and survival through a really dark and scary time. The title reflected our military connection and the focus of the time- Lily Kayda and the Tale of the Terrorizing Tumors. Publicly blogging forced me to find a bright side to every story because I firmly believe that the way you approach a problem and attitude affects the outcome. It also became a tool for me to help others understand more about us and living with cancer as those who live with hereditary cancer syndromes like Li Fraumeni Syndrome have to do.

I never thought cancer would skip me. It is a lifestyle of careful watching. Knowing my body and trying to teach the kids without being oppressive to do the same for themselves is always in the back of my mind while preserving a sense of normal. Although there is always a certain element of shock with cancer diagnosis- when you have a family cancer syndrome like LFS- you kinda are waiting for it. After watching my dad and brother be stripped of their personalities quickly with brain tumors- breast cancer was a relief for me. At least it was a part that could be removed. I knew it was still a threat. But the summer after my surgeries was the perfect answer- visiting family and spending time with my kids on the road- like my family used to do growing up.  One of my favorite mementos from the trip was a necklace I made in Colorado while Kiera tried to decide on which beads she wanted. It was a simple endless knot with a few beads. Some call it a celtic knot. It winds round itself like protein structure or DNA. Some call it a Buddhist knot. Also appropriate since most only know my better half as Buddha. Either way I love the symbolism of it. No beginning, No end. 

with my buddha, my monkeys and my necklace

SO I cut and pasted my ideas into a rough outline for Team Mallory- jet, monkeys, knot- and sent it off to Gina. She took care of contacting the company and after a few weeks they fired off some designs. When the design opened on my computer, my first thought was- OH DEAR GOD NO.  I shot it off to my cousin who said she liked it. It was a monkey driving a very inaccurate cartoon of a fighter jet pulling a banner. A monkey driving a jet? Pulling a banner? No. That is not going to fly. My cousin said no one expected mechanical accuracy on a T-shirt. I've long given up on accuracy but I just felt like it missed the target.   We were fast approaching Christmas, there was too much going on and I was spread too thin so I told Gina I would have my cousin come up with something and filed it away under a dusty mat in my brain. I was a failure at letting people help and I tried not to think about it again. Until Gina forwarded me some ideas her friend Hope, a graphic designer put together. They were beautiful. The knot was the same as my necklace and the center of Team Mallory. Four monkeys and their shenanigans. The jet, symbolic of not only a career, but a family of support. She captured us. And without these amazing ladies- the concept would still be buried under that dusty mat in my brain. I finally confided in Gina that my worst fear is that they would go to all the trouble of doing this and no one would want a shirt. Sometimes it's just easier not to ask for help than to ask and get rejected. 

TEAM MALLORY T-SHIRTS

So Imagine my shock to see within the first few hours, dozens of shirts selling.  The support is overwhelming, unexpected and so appreciated. As a friend said- it is exactly what you would do it for any of us- we just want to help. I knew letting others help me would be difficult- but I had no idea it could be so wonderful. Thank you to Gina for not giving up when I was difficult. Thank you to Hope for capturing a vision. Thank you to those who keep up with us and are brave enough to publicly announce any association to us. Thank you to all of our friends for the support and love. Team Mallory is bigger than I ever expected. Thank you for Hanging Strong with us. 

Shirt Orders can be placed until February 15, 2014.  CLICK HERE to Join TEAM MALLORY

Plan Be

For all the unfortunate things that have happened in my life, karma continues to try to provide me balance. The majority of this balance is being navigated, crafted, invented and hard won by my best friend.

He makes me feel better. He makes me want to be better. He makes me better.

When this started and I was spending the better part of entire nights in the bathroom- worrying about him and how he was going to function the next day at work if I kept making a ruckus- he would wrap me in his arms each time I got back to bed and say amazing things like- thank you for doing this. For us. For me.

And I would reply things like- well if I didn't there would be a mess in the bed and neither one of us would be sleeping.  At a different point in our marriage - that might have been a good thing.

The next time- Thank you for doing chemo and being so tough for us. For me.

And I would reply something like- I'm not tough. I'm broken. I'm sorry your wife is broken.

And he would reply- even broken, my wife is better than 95% of the wives I've met.

And I say- what exactly makes that 5% better? And he laughs and he still somehow thinks I'm amazing.  I bet that 5% sleeps through the night.

This month is tough. We have 2 chemos(1 down, 1 to go) Lily's endocrine appointment, Phillip's endocrine appointment and all of the ancillary appointments, tests, etc that come along with them. Then I have Lily's school- who now that we are into January of 2014 is fiddling around  with her emergency plan because they might get a nurse who might be able to administer Lily's emergency shot in an emergency. I just like saying the word emergency.

At first I was relieved and happy and grateful that the universe was providing this extra layer of protection for Lily monkey at a time when I may not always be available or near. And now 3 months later- the only thing that has been reaffirmed is that I sure hope the universe is better prepared to help out in a true emergency because this plan is failing.  I've signed countless papers elucidating- the plan. I've signed releases of papers to release the plan to get doctors and nurses to sign off on- the plan. I've taken calls about- the plan. I've had 3 meetings about- the plan. And more calls about - the plan. And yet there is this plan that no one can follow because not everyone has seen the plan.  Lily's teacher is absolutely amazing and compassionate and working with me. Her counselor also tries to make my life easier- going so far as to bring paperwork to the car for me to sign in the carpool line. Her endocrinologist is thorough and very clear on her needs for- the plan. So one would think that everything would fall into place. I'm not holding my breath. The only thing that seems to be affecting the plan is a looming field trip. According to -the plan- a skilled nurse can go on field trips instead of me. Yet since the plan is not in place- we need to have -the Plan B. Which is for Phil or my neighbor to go on said field trip.  I feel bad for Lily's teacher. She's trying to make me comfortable and help and make lily happy and work within the system and I just want to crawl into bed. I would love to go. I would love to feel well enough to go. I don't want any of it to be a problem. Phil's already finagling so many days this month to go to all the appointments and now Lily wants him to be her field trip buddy.

I hate that he is trying to juggle all the stuff I normally juggle. I hate that he knows I wouldn't drop the ball and he's madly juggling and balls keep flying into the mix. I hate that I can't just say screw it and let the balls fall.  I hate that I know exactly how he feels and there is nothing I can do. I can't even pretend it doesn't matter because he knows it does. I just want to grab random balls and hurl them at - the plan.

So he takes Lily to see her endocrinologist. Actually it went like this- Jen delivers Lily to Phil at work- Phil takes Lily to Tripler- Jen runs back to get other children from school- goes home. Lily walks in after her appointment and proudly announces she had 2 X-rays- well it was actually like 4 X-rays- this one(she holds her hand flat- thats to get a rough bone age to see if she still has accelerated growth) this one(she stands tall- chest X-ray to check for toomas) and this one(she hunches over- the second of the chest X-ray set) but they messed this one up(she hunches over again) and so we had to do it again. Daddy was mad.

I start to fume- with my anti radiation policy- I'm about to pop a gasket- Phil walks in- before you hear from Lily she had 3 X-rays and I schooled them about their incompetence and the chest X-ray is in place of the CT scan this round so it's less radiation overall. I smile. He's got the Plan. He's wonderful. Except he's carrying a big bag from the pharmacy with a vat for a 24 hour urine catch and I really can't for the life of me figure out when she is home for 24 hours straight and I really don't want to go mobile with a refrigerated vat of pee. Man things are hectic. And I'm clumsy- lord help us if I spill the pee. One more thing to worry about and Phil is writing the next appointment to check her hormone levels on the calendar and explaining the MRI plan. We are going to just do abdominal MRI this time- try it non sedated but schedule a sedated slot in case. Ugh we tried this last time- the sedation slots always come open before the non sedated slots. We'll figure it out. Her full body scan can be pushed back to July and coincide with the other 3 kids annual scans. I can't think past this week so- that will have to ferment in the queue.  All in all we have a few things to do to follow up with Lily and her growth- but it's our routine. She is doing good and is far enough out from treatment that we are getting some wiggle room in scans. Wiggle room that has already been appropriated to other needs- but that's all in a days work.

The next morning we turn around and head back to my oncology appointment. You kinda never know if it's just a touching base kinda thing or if there's a bomb somewhere about to get hurled at you. I prepare myself for either case- trying not to worry and telling myself it's routine and worrying just enough that I won't be blindsided by requests for scans or ovaries or something else. Somewhere in there we realize that I am due for chemo on next Monday and there are signs all over saying they are closed on Monday. Probably a good  idea to get that figured out.

The onc looks me over. Seems to be fairly impressed and doesn't make it sound like I'm dying this month- so that's good. I resort to inappropriate humor because that's what I do when I'm nervous. The one thing I want to know is- is there an end in sight to the one chemo or is it a forever thing like the other 2. He pauses and is calculating his response.  I appreciate that but the answer was in the pause.  The only reason I will get to stop the chemo is if the side effects become such that I need a break.  Whether that is fatigue or GI issues or rashes or whatnot- pretty much as long as it "works" - I will be on it. If it stops working. Well that's not good. So I focus on the- is it working portion. The results of the Xray before last cycle implied it was working. He pulls up the X-rays and puts them side by side- a couple weeks ago and September.  I see the tumors smattered about. They aren't as glaring as on the PET/CT but that is the nature of Xray. But they definitely are "not as conspicuous" in the recent Xray.  This plan is indefinite. When it becomes finite, we worry. So we wait and we plug along and we hope.

We schedule chemo for this Friday instead of next week because Phillip has his endocrinology appointment next week.  They draw blood while I am there and hopefully that will make friday a shorter day. I make the nurse draw it from my arm instead of my port because last time she drew my port it hurt and this is my way of testing her. I have shitty veins. She gets it first try. Ok, she can be trusted. We are walking to the car when it occurs to me.  I guess this bald thing is essentially permanent. And I felt sad for a minute. Then I give myself a gut check. I'd been playing  the "would you rather" game with some friends online and it occurred to me- this would you rather was a no brainer. Would you rather be bald or the alternative which is not BE at all?  I'll stick with this plan. Plan Be.

And last night- after one of my bathroom excursions- Phil rolled over and wrapped his arms around me and thanked me again for doing this for us. For him. And for a change I say nothing.  Because it's all part of the plan. There is no place I would rather be, no one I would rather be with and I would do absolutely anything to be the woman he thinks I am, to be the woman he deserves. And to do that I will have to continue with Plan Be.

Mini Mutants and the Future of Mutant X

I remember sitting in the clinic during one of Lily's chemos when the oncologist came in with my kids' genetic test results.  I always operated under the assumption that they were positive- but it is a very complicated issue.

I'm sorry but they all are positive for the mutation.

We knew Lily was(despite prelim tests saying otherwise- ALL tests can be wrong) because we were sitting there in pediatric oncology. I knew it in the core of my being. I knew it when I saw the lump on her leg and that first stupid little prepubertal sign.

I was really really hoping for at least one to not have it.

And this is the point it gets tricky.  Of Course I didn't want my children to have it, but in my mind- it didn't really affect their individual risk or how we faced the journey together.  Scientifically- I know this is not a supported argument. But how I feel cannot be contained by a library of scientific documents. I would never ever choose this FOR my children, but without it- we all cease to be. Until there is a treatment, the only prevention is to select against the being. Genetic tests are a complicated affair. Complicated emotionally, complicated scientifically- overall one big complicated conundrum wrapped in an enigma served with a side of quandary.

I knew I had the mutation. When I was 18, my parents asked me if I wanted to be tested- I said no thanks. Even at the age of 18- my gut instinct reflected the complex nature of genetic labeling despite the fact that I did not stop to consider future emotional, physical, medical or insurance ramifications. All big players in the debate. How can anyone be expected to emotionally handle knowing their chance of getting cancer is like 87%? Physically- one would think this would help facilitate appropriate medical care- but I would encourage you to ask the next medical professional you run across if they've ever heard of Li Fraumeni Syndrome.  Many times it merely facilitates your ability to advocate for yourself more specifically.

I am in a support group for Li Fraumeni Syndrome. I'm a firm believer that social support by others who are going through similar trials can make all the difference in a person's journey. I also believe that healthy debate and contrary view points are instrumental in this journey.  I am not always right. And certainly what's right for me is not right for someone else. But sometimes you can get lost on your journey and if you have others experiences to guide you- it helps you make sure you are on the right path. Ultimately we never really now if the path is right, but sometimes the time passes a little better with someone by your side, pointing out things you may have not noticed otherwise.

One of the big discussions is about Preimplantation Genetic Determination. This is essentially in vitro fertilization with embryos that are selectively free of the p53 mutation.  This method can cost tens of thousands of dollars, but to some, this is an investment that will save them on costly cancer related medical bills down the road. The savings in emotional trauma could be priceless. The other option is is prenatal genetic testing. The genetic test can be done by amniocentesis and then the option of what to do with that knowledge is up to the parents.

A friend recently forwarded me an article about a family who received a 50 MILLION DOLLAR settlement because their child was "wrongfully birthed". Meaning they had the prenatal genetic test performed(for a different mutation), the results came back that the baby did not have the genetic defect when in fact he did. The family's counsel argued had they had the accurate results, they would have aborted the child. Mind you the child is now 5 and severely mentally and physically handicapped due to the genetic "defect".  SO in my mind- thankfully that child does not have the appropriate cognition to hear his parents repeatedly say that he was not wanted. Hopefully he does not have to feel this on a daily basis, but on any level it makes me sad and very angry.

This is not about abortion. This is not about mutations or science or God.  Like I said- genetics are a very very complicated issue. They are us on the very most basic atomic level.  I wholly support individual rights and freedoms to make their own stupid decisions. It does not mean I agree with it. But for me- when you step into the arena of parenthood- by accident, intent, willfully, maliciously or ceremoniously- the game always changes. You are no longer responsible for 1 human, you become responsible for more. You become responsible for the future, your future, their future, society's future. If you want to genetically design your child to be whatever way you can handle or love better, that will reduce reuse or diminish some burden on you or society- that is your prerogative. You will also learn the very real lesson in parenting- you are never fully prepared for parenting. Sure you want to give yourself the best foundation and in the case of selecting against having a harmful genetic mutation- maybe for some this is their best bet. Others will argue to let nature take it's course. I'm pretty sure we've already modified nature with radiation, technology, GMOs and vaccinations- but that is another subject for another time.

Every person needs to look at what they can handle. Parenthood is like one great big eternal surprise party. You never know when the diaper is gonna leak in the Burger King play place,  or when the flu will strike during vacation, or when a tooth gets chipped or a bone broken, or when cancer might strike or alzheimers or diabetes. All of which can be genetically "given" or acquired through lifestyle.  Or both.  But people have to choose their journey and if pre-selecting embryos gives them an ounce of control in a crazy situation- then that's what they have to do. At what point do we continually hold everyone else responsible for our choices?

I rolled the dice. And it has been hard. At times parenting feels like an exercise in continual disappointment. And it has been complicated by cancer- of which my children all are at higher risk for. I would not change them. Of course I still hope they don't have to deal with cancer and I sure as heck don't wish it on them. I would never choose this for them. But more often than not- the adversity that changes our journey is our reaction and perseverance to do just that despite and unchosen obstacle.  But there are so many things that we can not control- even if we try to. I would not go back for anything and select against them. And I am sure glad my parents did not have the knowledge, science or means to even think about selecting against me. And if I have at all touched your life in even a small way- then know in It's a Wonderful life fashion- that is how I feel about this. Not everyone is equipped for this journey. But I also have tons of friends who have children with cancer who had no family history of cancer. I know many women in my support group who are the first in their genetically non mutant families to be mutated. You never know when that surprise party is gonna be thrown. I know cancer. I've lived cancer. This diabetes thing- crazy. Many of my friends have kids with celiac(guess what- also a genetic mutation....)Alzheimers-scares the bejeezus out of me. Metabolic and genetic disorders that result in children who require 24 hour care- break my flipping heart.

I chose my children by nature of how I live. By accident or By intent.  They are mine. They are part of me, good and bad. They will be able to curse me and my mutant genes as I have cursed those that came before me. And we will be joined by the experience and the strength to overcome it. You control what conditions you can or want to. Their genetics was not something I wanted to dabble in, unless you count the fact that I chose their father to contribute half of his DNA.  Ever notice how bred dogs tend to get mean or end up sterile?  Nature will always try to find balance. SO although we struggle with the ramifications of our imperfect genes- the imperfect mutants those genes code for have shaped my life in such a way there is no other journey. The journey will be difficult. There are no guarantees in life- mutated or not. Some of those difficulties will be due to a mutation, but some of the gifts they receive will be too.  Those gifts might just be the key. The same science that offers the opportunity to eradicate mutants before birth holds the promise of helping them live long happy important lives.  I will try not to judge others or claim they don't love their children as much as I do because they approach it differently. You never know when these differences will intersect on a path and the friend you travel next to might be the very one you oppose and yet the journey together might just be the solution.