Potty Humor

I'm not a thrill seeker. I never really have been. I love a laugh, but not much of a practical jokester. I can't stand surprises- perhaps because I've had my fair share. I'm a bit of a control freak.

Thursday was not an average day. It was day 4 after chemo. I was feeling shaky and over all blah. The constitution was questionable. My friend Wendy, who just lost her daughter to cancer 2 months ago was on her way over. She's been coming by once a week to cook for us. I am profoundly grateful for so many reasons although she continues to tell me it's good for her.  It gets her out of the house, we get a chance to talk and keeps me from cutting or burning anything. Which seems to be a real problem with me lately. Case and point....

The other night we were putting dinner together. Phil was leaning on the counter by the trash.  I was experiencing the post chemo, nothing tastes right phenomenon and was cutting up a piece of peach to put in my water because lemon or lime just sounded too acidic. Since you technically have to be careful with fresh fruits and veggies during chemo- I skinned the peach. I held the peach piece in one hand with the knife and skin in the other. Now I would also like to point out that skinning a peach when you have tingly shaky hands is probably not the best idea- but is challenging in and of itself as the little buggers are slippery. So I am concentrating on not letting go of the slippery little devil and go to throw the skin away- in essence jabbing my husband with the knife and dropping everything everywhere.

Phil yells ouch. One of the kids says "what the heck" and I experience that horrible sinking feeling you get when your body doesn't do something that you thought you told it to do. It flipping sucks. I stood there holding on to Phil sobbing(me sobbing- not him- he was fine and actually laughing- well despite a small mark on his finger- fine becomes a relative term the week after chemo)- because it's one thing when you burn the cabinets, or your finger or arm or cut yourself- it is entirely another thing when you stab your husband out of the blue. I've always been one to shoo the kids out of the kitchen when I'm cooking- there's less collateral damage that way- but especially now- if I am anywhere near the kitchen they make themselves scarce. It's self preservation really. Kiera wanders around doing Bon qui qui imitations whenever I go near the kitchen- I will cut you.

They quietly slide knives away from me. Or they jump out of the way when I open the knife drawer. It took a few days before I could laugh with them. But I'm back in the game now.  Perhaps it is because the shakies are starting to subside. Perhaps it is because sometimes all you can do is laugh and if you can't laugh at yourself- you shouldn't be laughing at anyone else. 

Recently the world mourned the loss of Robin Williams. It brought to light many issues about depression. Depression is a huge issue across the board. It's a huge issue with those facing cancer. It's a huge issue for those living with any debilitating disease. It's a huge issue for those who are depressed or love someone who is. I've struggled with it on and off my whole life and I know my parents have and I worry my kids will. Like any disease- it can be treated, it needs to be watched and sometimes laughter is the best medicine. But sometimes laughter is a bandaid on gaping wound. Unless you stitch up the underlying problem- it just won't cut it. No pun intended. 

Wendy's husband Pat started doing stand up comedy as a way to deal with their daughter Haley's illness. To me it makes perfect sense- but I am also someone who embraces finding the humor in less than funny situations.  To me, humor is the stitch that closes the gaping wound. In order to fix it- you have to uncover it, see it for what it is and attack it. The process can be painful- but at times laughing about the parts you cannot control is better than crying about it. 

I've never been to one of Pat's shows until the other night. We were just finishing up dinner- the whole family- in laws and cousins and the phone rings. It was Wendy. Bella was bopping around and tries to answer it- to no avail. She calls Wendy back, it goes to voicemail. I figure Wendy has had something pop up and needs to cancel our upcoming visit this week- so I was not prepared to hear her ask me if I want to come see her husband's routine- they are right down the road at the new lounge and they could use a few more audience members. Now. Or soon. But it's right down the road. 

Spontaneity has become a way of life. But Phil took one look at me and knew I was torn. Here we were finishing dinner with family, with my sister in law- who also is kind enough to cook for us weekly and then some and has been there to help with all kinds of less than desirable tasks. But also I know that there's probably a grand total of 2 people at the local lounge and I really would like to support my friend. Of course there is the dilemma of my constitution- but surely there is a restroom there. Phil has had an epically long week and decides what the heck- lets go- He finishes his last bites of dinner- delegates the after dinner chores and we go. 

Of course 5 minutes in- I know I need to use the restroom. Of course the restroom is right next to to the stage. And I realize why potty humor is so damn funny. Because it's a fact of life- everybody poops. Life is full of shit. Normal- runny- inappropriately raging at inopportune times. You can choose to pretend it's not there and go quietly about your business- yet at some point there will be no fighting it- you will have to walk to the bathroom in front of a room of people and hope that the laughter is perfectly timed. 

Living LFS

Have you hugged a MUTANT today?

I have. 5 years ago I learned that not only did I pass a dreadful genetic mutation on to one of my children, all four of them had it. Just like me.  I think of how I never got a chance to meet my grandfather. How my children never got to meet my dad. I want to meet my grandchildren.

Our bodies don't fight cancer like "normal" people's bodies do.
Where we only have one cancer fighting p53 gene, Most people have two.

So cancers grow and grow and grow.

Sometimes two or three at a time. Sometimes in itty bitty children. Sometime more than one family member at the same time.

Families should stick together. They should NOT get cancer together.
Children should NOT get cancer.

Almost 80% of pediatric adrenocortical tumors have mutations in the tp53 gene.  Not only did Lily's tumor have mutated p53- all of her cells do. She is a mini-mutant. It means she is at much higher risk for developing cancer again. So we screen her and hope we will be lucky. That she will be lucky.

The other kids have the mutation. We have been lucky so far. We screen them and hope we will be lucky. That they will be lucky. Those that know us know we just finished this routine. It's stressful. But we do it because it's our best odds. It's a part of living with a hereditary cancer syndrome.

Lily's drawing of us walking. It's in our genes. 

50% of people with Li Fraumeni Syndrome, mutants- as we affectionately call ourselves for the mutation in our genes, will get one cancer before they are 30 years old. I was lucky. I beat the odds. I was 36 when I got my first cancer.  My brother wasn't so lucky. He was 15.

In 2009, I tried to find others with Li Fraumeni Syndrome online. Facebook connected us, this rare group whose sense of humor was as twisted and warped as their DNA. Yet I am convinced, these mutants exemplify the theory that adversity only makes us stronger. They are truly the most resilient, positive group of people I have ever met. I heard stories just like mine. I heard stories more heart breaking than mine. They researched for me, with me. I researched for them.  They cried for me, with me. I cried for them.  Then we laughed together. We grew stronger together. We talked about a need in our LFS community, a need for community. They all were Living LFS with me. We were Living LFS together.

We finally got to cash in years worth of virtual hugs at a LFS Conference in Boston.  Real Hugs. Real Mutants. People who understood what it was like to have Li Fraumeni Syndrome. And they were living with it. Even though LFS is rare, our stories are not. In the LFS community the stories are far too much like mine, generations of cancer, far too many kids with cancer, way too many cancers.

www.livingLFS.org

I am proud to be a part of a new organization that will focus on bringing mutants together to share those stories.  This organization is LivingLFS.  I am passionate about helping mutants find the information and support they need to make living with Li Fraumeni Syndrome easier. I sincerely hope that someday we can truly make an impact and support research that will change the fate of LFS. We are already planning our first mutant meeting in Portland this October! Just to keep life interesting between raising 4 mini mutants in a military family in between chemo treatments!

In order to do this, we needed funds for a meeting space and since the Team Mallory Shirt was such a huge success- we decided to give t-shirts a whirl for LivingLFS through a CustomInk Booster. And it worked! It's working! We already have enough support to cover the meeting room and even some snacks during the meeting. I am so proud of the community and support for mutants, especially since it is such a rare syndrome. If you would like to show your support for LFS and our mission of supporting those with LFS and raising awareness for this disease, please check out the link below or just tell someone if the subject presents itself that you know someone Living with LFS- because that could really make a huge difference to someone with LFS! Have you hugged a mutant today?

https://www.booster.com/livinglfs

The EVERYday challenge of LIVING with debilitating diseases

It's AUGUST and I am already dreading October. I'm dreading the pink washing of "awareness" that comes with Breast Cancer Awareness Month.  Millions upon millions of dollars have been raised for breast cancer research, awareness campaigns and survivor support. Treatments are better. Awareness is Greater. The disease is being caught earlier and being treated earlier. But the cure is elusive. I know these things take time- but as the world readies to cloak itself in PINK in October, the clock ticks for me and many others who are fighting the battle with the disease. We know a little more about who has a better chance at winning the war- but there is the undeniable element of luck.

When I first heard of the ALS Ice Bucket Challenge I was mostly annoyed. I tend to get annoyed easily and especially in the heart of chemo weeks on the tail of a summer that never really developed.  I was annoyed again the people just don't GET it.  If you are dumping ice on your head and not donating to charity- how does that help anything? It seems only to raise awareness that buckets of ice are cold and people will do crazy shit instead of donate to charity. Yet somehow in the past few weeks- over 55 MILLION dollars has been raised for a great cause. SO as it turns out people like to do crazy shit and can be compelled to donate too. For ALS is a horrible disease to have to face, to know that you have a family history of something and you just have to wait for the inevitable, secretly hoping you might be the lucky one. Watching those around you suffer,  wishing you could ease their pain all the while feeling guilty for wishing you could escape the fate they are not so lucky to.

The ALS Ice Bucket Challenge showcases the power of social media. It shows the power that awareness can bring. It HAS raised awareness of a rare disease and much needed funds to help support a community that is too busy fighting to LIVE. It highlights the importance of genetics and need of research for rare diseases. I know ALS families must cringe and dread the ever present cancer awareness and fundraising campaigns- while they watch family members deteriorate with few options to assist them. Most people not even knowing what Amyotrophic Lateral Sclerosis is. I hope sincerely that this campaign changes so much for these families. Just as the March of Dimes changed the face of Polio and has gone on to care for a greater need, I hope this changes the face of ALS. Living with debilitating disease is traumatic enough but to live it with no one around you truly understanding what you are facing and how it impacts your day to day life- forever- unless they have lived with it.

Living with Li Fraumeni Syndrome in all senses can be a debilitating disease. I have seen it destroy families and relationships and dreams. It can rob people of their physical and intellectual presence- essentially robbing them of who they are- much like ALS.  It changes relationships. It takes away birthdays and anniversaries, college dreams, hopes of having a family or a normal day. It robs people of savings or the ability to save. Time is spent on 24 hour care and unplanned surgeries and doctor's visits, at a minimum preventative care.  I consider myself one of the lucky ones- I didn't face cancer until I was 36. I had 36 years of living, I hope luck holds out for more. Many of those years were dedicated to others fighting LFS cancers, both family and friends. But many of them were care and cancer free too. Each one leaves an indelible mark on you. Each one is a little harder. But through those battles I see strength and I choose to see the positive. It isn't easy. It is damn hard when you watch a 3 year old battle multiple cancers- yet 5 years later when she is defying the odds- you retain hope. It is infuriating when friends battle the same cancers over and over- their lives being put on hold, hoping to be able to live. It's humbling to see others who have lost so much, give so much back to each other- because they know how hard it is.

There are hundreds of rare diseases and special causes out there. Each one DESERVES millions of dollars in funding. Most don't get it. I don't resent that, I appreciate it. Those that get funding nationally are those that post the greatest risk to the most people. Rare diseases don't fit the bill. Until you have a rare disease- then it fits every bill.  ALS, LFS,  Adrenal Insufficiency, Type 1 Diabetes,  childhood cancer, and so many more. The people most affected by these diseases are the least likely to have the resources to start fundraising campaigns and devote time to awareness. It is the outstanding people that we touch that are moved by our stories that can really help make a true difference in our lives. A lot of times it is just the luck of timing that determines the success of a campaign.  I know I feel exceptionally lucky to know so many generous caring people that have helped us and many other causes.  I think when we judge less and compartmentalize less and come together more as a community, we can make a huge difference- one rare disease and one challenge at a time.

Don't Drive Angry Phil

Every time Phil pulls into a parking spot I cringe. He's never hit another car while parking but he seems to be a little more aggressive at squeezing into tight Hawaiian parking spaces than me.  I'm constantly yelping as he swings the van around and he laughs every single time.

It is one of the many ways chemo has affected me. I'm jumpier, more off balance. I don't mean to question his skills, but I do find myself critiquing his driving, a lot. I feel bad because his commute is pretty brutal- at least an hour each way- bumpah ta bumpah, sun in face bra. I often quote one of his favorite movies, Groundhog Day-

Don't Drive Angry Phil!

Yet he doesn't really drive angry, he just has much better skills than me- especially chemo sabe me. So one night we are sitting to dinner- recounting a fun story of how our 14 year old boy child decided it was ok to take the van for a spin around the block. I was not amused at the time- but in our house- as it was in my house growing up- public ridicule is a really good deterrent. The discomfort of facing the people you affect is an important life lesson. So we were laughing at his joyride and Phil was nice enough to share an anecdote from our youth. 

Now mind you- my brother turned 16 shortly before he was diagnosed with a brain tumor. I do believe he may have actually taken the official driving test post op with a baseball cap on to hide the scar. I'm pretty sure issuing driver's licenses to brain tumor patients has always been frowned upon- but as my mom always says- you do what you gotta do. I - in my 14 year old wisdom, refused to get into the car after a few episodes of crazy driving. Of course I had witnessed mild seizures and some of his memory deficit at home, but all in all it was standard 16 year old driving and standard sibling rivalry in a non standard situation. Yet I fell on my proverbial sword of traffic safety and concern for pedestrian welfare. 

The irony lies in how angry of a driver I was for the next several years. As I recovered from the loss of my brother, thrown into the brain tumor drill again with my dad- I was an angry teen driver at it's worst. And Phil bore witness to a lot of it and specifically one instance he decided to out me in to our children. The long and short of it involved me tailgating someone with much better brakes than my 82 Honda  and a swerve , mounting a curb and almost taking out a fence. Yet no cars, Jens or Phils were harmed by the conclusion of this tale.  I will leave the real story for Phil to tell- as it really is his- but will say the kids were in tears with us laughing at our past mistakes. I was also showing the 14 year old that we could relate, that we were human and that at the end of it- I learned to scale back the road rage and limit my law breaking to speed violations.  

The thing about cancer, or injustice, or pain, is there is a certain element of loss to all of it. A loss that is out of our control. It is very tough to relinquish control. To learn to accept the feelings that come with loss of control- the grief, the anger, the acceptance.  Some people never learn to regain control and hold out for others to give them direction. Some people take this loss and use control over others to fill it. Some people realize the loss is part of them, learn from it and use that to move forward. 

In my teens I liked to drive fast. It was a risk I thought I could control. My dad taught me to drive, mom's nerves couldn't handle it. After bearing 4 children who continually test their mortality- I'm with my mom on this. BUT back then I was a different girl, we were a different family. Dad would take me to the new neighborhood way down Smoky Hill Road. It was the skeleton of a neighborhood- just roads, no houses. He would let me take turns and try to stop and start and he would yell out situations- A car is coming at you and a dog just ran in front of you! I said I would swerve. He said I just failed my driver's test. If I swerved into the car- I might kill myself and everyone in the car. If I slammed on the breaks, I might fishtail to the same result. He gave me scenarios and possible results. Rain, snow, black ice, falling trees, other cars. I learned about defensive driving and planning ahead. I learned to predict problems to get a lead turn on reactions. 

I would get in the car and we would start with 12 points. When I lost all my points, the lesson was over. Even when I wasn't driving, we were always tallying points until it became a running joke. I'll give you two points for the kid on the bike- no way- he's in the crosswalk that's 5.  It that moment  we were tallying the value of life in relation to the rules of the road. All the while, he was teaching me to be on my guard- he would say there's a kid there on a bike to your right- if a car were to turn in front of you right now- where's your out? And we would talk about it. I learned to think about actions and reactions and to be prepared. 

Yet I wasn't prepared for my first ticket. It was spring break the year after dad died, Phil and I had gone to visit friends in Arizona. I was hauling mail.  Between the two of us- we could expertly spot cops hiding over and under over passes. Say that three times fast. Well we missed one and I was tagged going well over 90 in a 55. I was pretty worried that this was going to be the end of my driving career. The cop knocked it down to 80 and gave me the option of Driver's School. I would have to pay for the course, the speeding fine, but it would be no points on my record. Well glory be if I hadn't learned that come hell or high water I better keep points off my license. So the next day I called and enrolled in the class. 

The location was inconvenient, the time was inconvenient and I could tell the second I sat down in a dilapidated inner city classroom that everyone there felt the same enthusiasm towards being there. When this soulful woman walked in and asked who was excited about being here all of us looked around to see who exactly might take the bait. Not a hand went up. She smiled- me neither she told us- she had better things to do- and she knew we all did as well but something put us together in this room and she was going to be darned if she didn't do something with it. I think at that point everyone was as nervous as I was about the next 6 hours we were going to be spending there. 

She had us get up and arrange the desks in a circle so we could see each other. Then we went around the loop and told why we were there. For each person, she would ask a question- a really simple question like- to the guy who ran into another car in a school zone- what would you have done differently- he said- probably not eat that second cheeseburger. As it turns out- he was unwrapping a cheeseburger- and a glop of ketchup fell into his lap and while he looked down-slam! So she talked about distracted driving and asked everyone who was distracted when they got their ticket to raise their hand. Everyone did. We talked about life and anger and the big picture. We talked about zooming to get there 1 minute sooner- how important was that minute - because 1 minute could become 30 minutes late if we were pulled over- or never if we were in an accident. She reminded me of dad. She was no  nonsense- this is how it is- don't lie to me kinda lady.  Everyone in that room had a story and their story impacted why they were there at that moment and she had us talk about it. I half wondered if I had walked into a candid camera sponsored support group by mistake. 

When we had sufficiently been counseled as to our impact on the driving world and the larger world as a whole, she handed us an exam booklet. When we were done, we were free to go. It had been barely 2 hours. But in those 2 hours what I learned was more than defensive driving. I learned about actions and reactions, I learned that my actions have consequences but seemingly bad consequences aren't always bad. I learned that complete strangers can come together to help each other. I learned that there are people out there who are amazing and in their little corner are making a world of difference one bad driver at a time. This is where I learned that it's not so much what you do, but HOW you do it that makes a difference. If you are passionate and work to help other people make themselves better, not only will they be better, you will feel better. It is one of the many experiences that taught me people are angry for a lot of reasons and if you take the time to find out why, it makes a difference. It also taught me not to drive angry!

Keeping Calm through Craziness and Cyclones

Everything happens for a reason.  That doesn't mean it's good or fun or that we don't have a say or that we do have a say- but if we can find the purpose, sometimes it makes the roughage a little more palatable.

After week one of chemo-lite- I was feeling pretty good. Running here and there getting the kids ready for school.














spending time with Bella, who I had promised just mommy and Bella-time.

Then the icky hit. I had overdone it. I knew at dinner- twice having to leave the table of leftovers and certain smells were making me nauseous.  When I feel ok, I feel the clock ticking the loudest. My lists are full, the checkmarks are few.  So the days where I feel ok- I take deep breaths and do what I can. Later that night the unrelenting nausea set in. I wasn't expecting it- after all I had only done the "lite" chemos. Maybe it was something I ate. It hits furiously- Phil comes in- not sure how to possibly help- there is no hair left to hold back- I guess that's a perk. I'm tired of finding the bright side.

As I get all four kids off to school, the news hits- not one but 2 hurricanes are on the way. GDMFCSSOB. Phil says they won't leave. He is reassuring himself, not me. He is kidding himself, not me. I am.  I know what this means. It means he will pack up and leave. He and the rest of the available pilots will escort millions of dollars of precious flight power over the ocean to dry land while those left behind prepare and protect our priceless treasures. Ultimately ironic as one of the primary missions of the unit is to protect the island, just not from this kinda threat. I know this drill- it's been many years since I've done it in earnest, yet it doesn't really differ from the living with cancer drill. You wait, you hope, you prepare the best you can- but you just don't know if or when it will hit and how bad it will be until it does.

I go about business when the realization hits. Lily's scans. The hurricane is supposed to hit the night of Lily's scans. OH mother of GDMFCSSOB. The familiar PTSD scanxiety sets in. He still thinks they aren't going. I ask my sister in law to be on call to take the kids to school the morning of scans. I know he will be gone. He packs a bag, because superstition dictates if you are prepared- it won't be as bad. That's bullshit. Sometimes it just doesn't matter how prepared you are- it still is bad. But I plug along with mental checklists- start doing laundry. Get out the huge lemonade jug for water, grab a few supplies from walmart and safeway. There is no water or bread to be found in the stores. People are expecting the worst.  The last two hurricanes that hit hard were Iwa and Iniki. We are due. It doesn't help that the beyatch's name is Iselle.  I secretly hope she is graceful as her name and not a force to be reckoned with like my Belle.

I look through my supplies. Somehow my emergency radio and can opener are missing. I hit amazon and overnight some supplies. I know they won't be found in stores. The thing about hurricanes is you have time to prepare- it's not like a tornado that just pops up or an earthquake that sneaks up and shakes you. Phil comes home with three cases of water and a metal suitcase. The one that fits in the jet. He rallies the kids to help him put all the patio furniture in the garage.  I feel lost. I am grateful that I didn't have abraxane.  We barely speak.  I know he has to go. Part of me finds the bright side. For months he's gone out of his way to cook for me, make my load easier. Part of me worried that he thinks I can no longer do it. Part of me wonders if I can. He wouldn't have left if he thought I couldn't handle it. Not exactly the way I wanted to rally that vote of confidence.

I am at the sink washing dishes when a thought hits me.  If she were still alive, my grandmother would have been calling asking how we were. She'd be praying up a storm and keep the family updated. A calm settles after the tears. What will be, will be. I know my angel of weather will look out for us. Phil shaves my head and I take a cold shower- because in the flurry of events- no one noticed that there is no hot water. He resets the water heater and we cross our fingers, we go to bed.  Phil and I get up at 4am. I see him off and get ready for a long day. I wake Lily and we begin our adventure to scan land. It is just another morning in Hawaii- sunny, breezy. No hint of the impending danger on any front. I hear a wimper from the back seat and my heart breaks. It's going to be ok monkey- I tell her.

Did you grab the movies?  She sobs.  Oh no. 2.5 hours in the tube and she forgot her movies. I'm wondering what exactly is in the 35 pound backpack she is lugging around.  I take a quick detour to walmart. This could be an epic bad decision. epic. News stations had been feeding images of crazy lines outside stores, people waiting for water. The parking lot is nearly empty. I sigh. We jog in- grab the latest Barbie flick and are out of there in a flash.

We are the first car at the valet and the first to check in at MRI.  They allow me to come back with Lily as she gets ready. She hands off the movie and the tech scans the length- Barbie movies aren't particularly long. Ideally titanic or dances with wolves would be better suited for today's scan- but she wants to watch Barbie- it's her hospital visual comfort food. She is prepared that they have to stick her.  She gets settled, her movie goggles on and I make my way to the waiting room. It's hurricane coverage. This is not helping my calm. I have to move. I let them know I'm going to get some tea- they let me know it's going to be awhile.

I stop to visit one of my favorite nurses on the way. We chat for an hour. I decide I better check back. I grab my tea and as I get settled in the waiting room- Lily bursts through the door wearing a ridiculous hair net and strikes a grand pose. She declares that she has gone to the bathroom and wanted to check on me. I sneak her a big bite of purple flower cookie that I grabbed for her. She jumps up and down, then heads back in to finish her MRI.

They call me back. My heart lurches and sputters, settling somewhere in my ears- a pounding drum.  She just wanted to say hi- they were taking a quick stretch break.  She wanted to make sure I was still there. I'm still here. Her leg hurts. Try and stretch it.  They only have 15 minutes left- you can do it Lil.

She finishes up and practically drags me out of there- lest there be a chance they call her back for more. I know that feeling. Overall it was less than 3 hours. That's a good sign. The tech seemed fairly chipper as we left and told me how great she did- I'm hoping that's code for - nothing to see here- just nice pretty boring organs.  We won't find out for days, the official report. I hope with the hurricane- they don't get lost in the chaos.

We stop to get gas and ice on the way home. Drop the ice in the cooler and grab celebratory Panda on the way to get Bella from school.  The post scan migraine I always get is starting to creep up behind my eyes- but I just don't have time for it today.  We detour to the beach by school since we are 5 minutes early. Lily collects shells, I collect thoughts- tally lists in my head. Phil texts that he made it to Vegas.  One more worry to check off the list.

We head home and finish preparations. Phillip calls to tell me wrestling is cancelled because of the storm and can he go work out with his friend? I give him an hour and a half. I lay down for an hour then head downstairs to wait it out. Then I remember we were supposed to go to the Ballet. Well I remember because the girls are asking incessantly. As of yet, it's not cancelled but there is no way. There is just no way. The girls are in tears. Phillip flies through the door at 4:59. A whole minute to spare before Hurricane mom knocked out all his electronics. I shoo the girls to the park- as of now it's still partly cloudy- they need to enjoy the weather while they can.

Phillip is staggering around the kitchen. At first I don't pay attention- he usually comes right home and forages for food- he's 14- its what they do. I have no discernible dinner plan, so I allow it. I realize he is drenched in sweat and pacing. GDMFCSSOB- his blood sugar is dropping and fast.  What's your blood sugar?  He looks right past me. I yell at him to sit the hell down.  He moves towards the chair and mumbles 32. THIRTY TWO?!? Its supposed to be above 70. Usually people lose consciousness around 20-something. He is fumbling with an applesauce packet- that won't do- straight sugar is needed. I grab a juice box- empty it in a cup and dump in two spoons of sugar and hand it to him.   I go to his room and get his glucometer.  It's still dropping he says. I start rifling through the pantry- where is our emergency dr. pepper?  I finally found it. He takes his blood sugar again- its 36. shit.shit.shit.damn. I hand him the pop and he sucks it down.  We are dangerously close to needing the glucagon shot and that means possibly riding out the storm in the hospital. GDMFCSSOB. We wait 10 minutes and he takes his blood sugar again- my sister in law texts to see if he's coming over for dinner. shit- she was going to feed him for me while the girls and I were at the ballet.  He takes his blood sugar again. 56. We are at least on the rise. I hand him another juice box. I text an apology and that we are dealing with a tanked blood sugar.  I think for a second- what if we had left for the ballet? Would he have been able to get through this alone. I decide not to think about it. Everything happens for a reason.  She texts asking if we want pizza- oh dear this woman is a god send. Absolutely.  Pizza.

We sit around watching the news, eating pizza. My adrenaline stores depleted, energy gone. I bleach the bathtubs so I can fill them with water. I plug both the kids bathtubs and run a hot bath for me. The girls' tub is draining and the faucet is leaking. Hmmm. I invert a bowl and put it over the drain- it suctions down. I think I have fixed the problem, so I go to turn my faucet off and it spins to off- yet it is definitely not off. It is the opposite of off. I spin the knob back and forth- it finally grabs and I get it turned off before I have premature natural disaster flooding. The par on this course sucks. I refuse to say it could be worse because according to the news- worse is still barreling towards us.  All I can do is try to relax in the bath and then crawl into bed, expecting to wake up to the roar of wind and the crash of trees.

I wake up to quiet. It's cloudy but the sun is poking through. I turn on the news- still waiting but its not looking too bad. I check the tubs- both drained. Add that to the honey-do list.  I make breakfast and take a walk with the girls before the storm officially blows over us.  We go to the beach to check out the waves. A few surfers are out tempting fate- but it doesn't look too stormy. We go visit with the cousins for awhile and head home for lunch. A big sigh of relief. The world has now heard of the storm and I get a couple texts from afar. I assure everyone we are fine. Although fine seems to have taken on the meaning -perpetual state of crisis with a background of paradise.

I hear the kids grumbling how we did all that work and getting ready for nothing. I explain to them that it's not for nothing- that is exactly WHY we do this. I know it's hard for them to understand. We feel a sigh of relief because we are lucky, the storm did not hit us. But there are many on the Big Island who weren't so lucky. It could have easily been us.  It is amazing to me how scanxiety parallels waiting for a hurricane that's on track for you. It's a lesson in being prepared and faith and control. And sometimes you just have to take it an hour at a time. You don't know what could be around the corner- it might just be sunshine.

Bad Hair Day

Last week the girls had auditions for Little Mermaid Jr at PACK. The practiced their little hearts out and I was really impressed with how well they auditioned- even Bella, who up until a few weeks ago I was convinced was tone deaf. Turns out the deep little tone she likes to hear herself in- isn't her only tone and their voice teacher is nothing short of a genius because she actually can sing for him in this really cute little voice.  Lily and Kiera both got call backs which was a new experience for us- and a positive one. They aren't quite ready for the major roles- even though they are pretty sure they are- but they are paving their way. I'm mostly excited that it's a show I adore- because for the next three months it's all that will be playing as we drive back and forth.

At the first rehearsal, they did a read through. I sat and listened. One little girl just kept staring at me. I get used to it. It's so much easier to deal with kids than the adults.  When the parent next to me left she relocated herself to the chair next to me, continuing to stare.

Hi.

Hi.

Her script lays closed in her lap, she is petting her hair- just like Ariel in the movie, so I ask her-Can you follow along in your script?

Nah, I can't read any of it. She has the most incredible glass green eyes. I don't know maybe they are hazel- but they are clear- like sea glass- I've never seen anything like them, they are amazing.  I smile and open her script and point to the words.  She leans in and whispers I just got a haircut. For the summer. I had A LOT taken off. 

Wow- that's cool I tell her. She smiles. I spend the rehearsal telling her when to turn the page and answering her questions about the show.  When I relay the story to Phil later he looks at me and laughs- so you never told her what happened to your hair?  Nope- she didn't ask.

For the past few months the conversations I have with people centers around my hair. It's kind of silly because even though I took care of my hair- it never dominated every discussion as it does now. I know people are curious and I prefer it to the quiet stares- but sometimes it feels like it's all I am now.

It's so soft. 

It's such a great color.

It's coming back in. So you're done with chemo?

I wish. But we are on to a new routine. A routine that this far has me feeling better for a couple weeks more.  Monday I just had Herceptin and Pertuzumab- both monoclonal antibodies and far easier on the system and I get those every 3 weeks from now until forever. I got a shot to keep my bones from self destructing and another shot of B12- which I highly recommend. That stuff is gold. And not having abraxane is gold. But all that glitters is not gold and for now, every 6 weeks I will still get abraxane- to keep the glitters away. It also will keep the hair away. Which kinda sucks.

As we sat in chemobay- it was a different crowd. We got up early to get done early.  We got the corner chair- because it's not that we aren't social- I just prefer to meditate or sleep while I get drugs pumped into me. Plus almost everyone else here has the same hair as me -so what on earth could we possibly discuss? Phil has a new app that has a million levels just waiting for him to dominate. Sometimes we play a little scrabble. A woman walks in with a toddler in a stroller.  Children are never allowed in the chemobay so I kinda worry about what she has going on that they overlook this rule for her. A very big slovenly child and by child I mean 20 something- who we had previously seen snoring away in the waiting room- shuffles in. He plops down next to his mother in one of the chemo recliners pulls the tv around and turns it on very loud- oblivious to the dozens of eyes following him.  I hadn't realized it was bring your kids to chemobay day. I look over to the toddler who looks at me and I shrug.  He pats his hair and shrugs back. I look over to Phil who witnessed the exchange and we both look back to the toddler. He again rubs his brown tresses, shrugs and looks back to me.

Phil- SO um, I guess he noticed your hair.  It is pretty cool.   Then he rubs my head.  The little one rubs his head in this strange monkey see monkey do game we have going on. I laugh because the only alternative would be to cry and I'm stronger than that. And then I take our chemobay pic.

Yeah- that's kinda how it goes these days- even my nonverbal conversations with toddlers center around my hair or lack of. I like my new hair- my butch cut as my mother called it. It was soft. It kept my nugget skin shielded from the sun and air vents. But it was starting to come out. My head had that burning itching it gets every time after abraxane- the nasty little necessary evil that it is. I was kinda hoping it would just thin a bit. But last night my shoulders and chest were covered in fine layers and I felt more like a family pet. I took a shower to rinse it off and gently patted my scalp. As I pulled the towel away, I was again coated in a shedding of little hairs. I don't want to do this again and again and again. I had so hoped this routine would let me keep my little hair. Just a little to protect from the sun. But no.

It had been a good day physically, but I was exhausted emotionally. I had a friend having surgery. Another who was recovering from surgery, another whose husband was rushed to the ER for a possible heart attack. Friends that I would normally drop everything to be at their side and I couldn't. I'm barely keeping up with all our activities. Not just my hair was falling out- pieces of me were falling apart. And yet this was so stupid compared to the crisis in so many people's lives.

I asked Phil to shave it. It was long enough and thick enough still that it was a process. I kept my eyes tightly closed. I hear Bella come in, her little hand on my back. It feels heavy. All of it. It's not just the hair. Its the reminder. Not being what I want. Things not being easy. It could be worse. It could be worse. It could be worse.

What's wrong with mom? she asks as she pets me.

She is not pleased with her current hair situation.  Phil responds.

The little hand still petting. I thought the water from the shaver was dripping, but its coming from her eyes. Does it hurt?

Yeah- Phil tells her- It hurts.

It's really not just the hair or the bad hair day. It's the learning to live with cancer. This is how it is and it is about making it work. Just like an unruly cowlick. Or curls in humidity. I don't have to worry about that. Sometimes things hurt. On lots of levels. So I let the hairs and the tears go because I hope as each one leaves so will some of the hurt so I can focus on moving forward and not on that. Because it could be worse.

Back to Chemo

So vacation's over. Tomorrow is back to the chemo routine. It's kinda like going back to school- the knot in your stomach. I know it needs to be done. It's just hard. It's tough feeling tired all the time and being leashed to the bathroom. Even though I've learned some tricks of the trade- I still notice things like when I take the girls out to lunch and a table just stares at me. Every. Damn. Time. I look. Up- I meet 6 eyes just staring. I smile the first dozen or so times- no smiles back just hard stares. So I put up the invisible wall and enjoy my girls.

Last week I felt good and in between running the kids to activities- I would stop and get salad, or a hamburger or ice cream- things I've found just don't work on chemo. I even had coffee.  Then the anxiety attacks start. I'm sure it was the coffee. Then I have a minute alone and think, huh- I kinda feel ok- maybe next week I'll take the girls to the pool or to the beach. Slam- reality hits- Monday starts the routine over again. Damn. I will not feel like being near the pool or the beach.

Bella comes and hugs me after dinner. She's been sad. Do you have to do chemo again? Yeah I do. But you are no fun when you are on chemo. Well there goes any illusion that I kind of sort of had been doing OK.  It makes me so irrevocably sad, I disappear upstairs to have a few moments. No one notices- as it isn't unusual for me to have to disappear after a meal. Every night Lily says goodnight- not sleep tight but now she says- feel better. FEEL BETTER.  Then I feel worse because I wonder how hard it would be to pretend to feel better. Because apparently my pretending has been subpar.

And I feel bad because on the scale of paper cut to flu- it's really like a mild gastroenteritis. It's not that bad and it sure as hell could be worse. And I was NOT prepared for the emotional whammy provided when you have your ovaries yanked out. I mean everyone knows theres an emotional component and I know that- but on the scale of I don't like my new haircut to the love of your life just died- I figured it would be closer to my friends went out without me kinda pain. When you deal with the really heavy stuff- you sometimes underestimate the biologic capabilities to knock you on your ass. In the past month I've been reduced to puddles of goo over seemingly ridiculous things. Each time Phil comes to the rescue and makes me feel like I have not just completely lost my mind.  The worst was the one time I thought I was completely alone and was wallowing a bit in said puddle and then I feel these lanky 14 year old arms around me.  And I feel even more abysmal- as there is some unwritten rule about losing it in front of your kids and I have lost it so far that I cannot even pretend to try and pull it together. Yet he holds on and doesn't even let go when I think I may have found that relatively slight string to which I might be able to pull myself out of said gooey puddle.

So tomorrow, Monday I am to show up to the chemo bay with a plan. My oncologist is awesome and lets me choose my own adventure. I know I have been relatively lucky on the side effect front. That being so- it gets old.  I wonder if staying the course is the best way. I wish I was the strong stoic sort who could power through unfazed- but I am fazed. I don't blog a lot because I don't want to seem pessimistic but more often than not I just don't feel like it. I don't feel like sharing this part of the chemo journey with everyone- why should I make everyone miserable just because it's not all pink ribbons and parades. I know this is part of the process. And I feel bad because it could absolutely totally BE worse and I know at some point- possibly sooner it could BE worse if I make the wrong call with treatment.  But as my onc kindly pointed out- sometimes things get better or worse for no good reason at all and it's about quality of life. And even I got into the routine- our new messed up normal and forgot to look ahead. I forgot to plan ahead like there was a destination and spots to see along the way. So we will be decreasing the dose of abraxane- which is the toughest to take. I will probably do that one every other cycle. I will keep up with the Herceptin and Pertuzumab as usual every 3 weeks and hope for the best.  This will give me a little more time to feel better and maybe do some things and maybe get a little bit of fun back.  

Pancreas Boy and Talks of the "Artificial Pancreas"

For the past few days I've seen several articles about the great new "artificial pancreas" system. Some call it bionic.  Being the proud mom of a child with a delinquent pancreas, my interest in technology that makes his life easier is pretty high.

First of all I must remind that there are different types of Diabetes. Only about 5% of all diabetes cases are Type 1- also known as Juvenile Diabetes- the kind that you are born with or develops after autoimmune attack or traumatic pancreas injury. In Type 1 diabetes the mad pancreas just stops making insulin. Without insulin, sugar can't get into cells and hangs out in the blood stream which is just not a good thing. Treating Type 1 Diabetes requires insulin shots and multiple blood sugar tests daily. Most cases of diabetes are Type 2 diabetes, also known as insulin resistance. The body makes insulin- but it doesn't work effectively. This is a result usually of poor diet and lack of exercise. Phil and I refer to Costco as the Type 2 Club- we stand by and watch as multiple hundred pound humans push past children in the queue for snacks. Some nearly run over the kids on the mobility assisted scooters, legs swollen and purple with neuropathy. I am definitely not a picture of health, but it does sting to be surrounded by people who take for granted the ability to change their circumstance through diet and exercise alone. Now, not all cases are the same and not everyone with T2 suffers from it as a result of overeating.  But it is a bit of an epidemic, especially here in the States.

This past spring we took a trip to Disneyland as the girls were performing with PACK. In an effort to be fair we tried to do something fun and meaningful for the other kids. You know in the off chance that getting to go to Disney for spring break was not awesome enough. Phil decided touring the Medtronic facility in Burbank(as opposed to going on the Price is Right- whaaaat?) seemed like a good option. Medtronic is one of the major manufacturers of insulin pumps- small pager size devices that deliver insulin instead of having to do shots. I sometimes vastly underestimate my husband's goofy genius. It was a hugely successful trip because we all got to see how Phillip's latest piece of diabetic machinery was manufactured but there was also a mini "museum" featuring the history of diabetes treatment. From ancient diagnosis- if you were going to the bathroom too much,  you would be told to leave a bowl of urine out- if the ants overtook it- you had diabetes which means "to pass through".  Later the term mellitus was added- meaning honey, or sweet because the reason the ants were drawn to the urine was because of it's sugar content. We saw models of the first insulin pumps which were seriously the size of a ghostbusters back pack. Although I truly appreciate how far this technology has come- there are still some major hurdles to overcome.

While we were there we saw new innovations- using bluetooth and wireless connections throughout the house- so a mom could be alerted if her toddler napping was experiencing a dangerous drop in blood sugar to continuous glucose monitors and pumps that "talked" to each other- essentially closing the loop in what technicians call an "artificial" pancreas. In medtronic's model- there still needs to be human interaction to ok the administration of insulin. If a person is administered too much insulin- resulting low blow sugar could be deadly. The problem with insulin and blood sugar is that it is a continuous loop involving multiple organs and outside factors. For one stress- stress plays a huge role in the use of sugar in the body. Exercise- where as real time exercise alerts the body to use or store sugar- a continuous glucose monitor can only send data regarding blood sugar trends. All these things constantly remind me how amazing the body is as a series of systems that work together. It makes sense that no one small device could handle the demands of the endocrine system feedback loops. Yet when I look at the technology amassed for convenience- I wonder why the hell not. 

Right now, Phillip wears two sites- both are about the size of a half dollar and raised about a quarter of an inch. The cannulas(little plastic tubes) are inserted with a special device(inserter) and have a tape holding them in place. Both are wirelessly connected to a small device that records data. The two devices can talk to each other. Phillip tells it when to give insulin. He also can tell it how many carbs he is eating and it will calculate how much insulin he needs for him- based on his current blood sugar and number of carbs being eaten to keep his blood sugar in range. The sites last for about 3 days- then he has to plug another one in. The insulin is stored in the pump and also has to be changed every few days- as heat and whatnot affect it's potency this is attached to the site through a clear tube. He takes his blood sugar with a glucometer( finger pricks) 4-however many times a day he needs to. Some days are a lot more than others and that was one of our struggles- getting him to take his blood sugar. It doesn't hurt too much, although if you look at his fingertips you will see little dots from the dozens of pricks every couple of days. His new pump sends him alarms to calibrate- he needs manual blood sugar checks to compare to the continuous blood glucose monitor values. Not any system is infallible and the CGM monitors changes in blood sugar values more so than actual Blood glucose- this is good because it alerts him if it senses he is getting too high or too low- in order to shut the thing up- he takes his blood sugar and react appropriately. 

The new promised "artificial pancreas" is something we heard about right after Phillip was diagnosed. At my cousin's wedding, a friend of hers was doing research on the feasibility of implantable artificial pancreases. Pancreai? Although the idea of out of sight out of mind insulin pumping is appealing- functionally it requires surgical procedures and steps that kinda worry me for a mutant child. As much as I would like him to spend less time worrying about blood sugar and monitoring- repeated surgeries concern me. That is already something that is on the table due to mutant status and propensity to grow tumors. On the other hand- tighter sugar control means less food for tumors. As much as this lot in life sucks for him- he is managing remarkably well. He learned that diet and exercise are tools to managing how much insulin he has to take and how he feels. Although he can not control his pancreas function, he can control how much he puts into the system and other factors. Even though I would have preferred for him to learn this lesson another way, I appreciate the growth I see and the thriving despite circumstances. 

an implanted insulin pump

Realistically, I think closing the loop outside the body is a good predecessor to implanting devices. The size of the devices still needs to come down. I look at cell phones and what can be achieved - I know the future holds promise for medical devices. I do believe artificial pancreas in a misnomer. As the mother of a child who is lacking a pancreas- I garner a true appreciation for what that organ does. It also gives the general public a false sense of where the technology is at.  The collection of multiple devices talking to each other is a huge step forward- but pancreas they are not. Insulin system, yes. They have even added the glucagon element which is huge- glucagon is a chemical that signals the liver to release sugar stores when blood sugar falls dangerously low. One of the huge worries in a diabetic lifestyle. Phillip carries a shot around with him in case of an emergency. The new "artificial pancreas" system adds this element to another pump, poised and ready to wirelessly communicate with the other pump and continuous glucose monitoring system. You still end up with a whole lot of inpector gadgetry and wiring before it is good to go. In a stroke of genius, the system includes use of an iPhone. By promoting an apple product, hopefully ensuring a partnership that could symbiotically improve the lives and business of many. Because what it ultimately comes down to in the world of health care is the business side of it. 

I am hopeful that in Phillip's lifetime there will be really good options for him to manage his diabetes. I am grateful to the researchers and teams who are working really hard at improving these lives. When I told Phillip about it and asked him what he thought- in 14 year old fashion he shrugged. He doesn't really want to wear yet another piece of something.  I think in the grand experiences we've had with cancer, sometimes diabetes takes a lesser stance due to it's relied treat-ability. Just like each pancreas is unique- each diabetic has a different take on what is a convenience and what is a hassle. Any way you look at it- options are always good. I can't deny as I hear other parents who have kids with other endocrine disorders using the diabetes model to make their kids' lives better- I have hope. I have hope that these systems will be the forerunners for treating many conditions. So here's to the artificial pancreas and the systems it will lead to. For diabetics and other biological conditions. 

Healing

Being in the hospital is one of the most torturous experiences.  By all recent comparisons, this stay was a 4star excursion. I had my own room and Phil stayed the nights with me. Not the romantic 2 night get away that I have been dreaming of, but we survived it and that's all I ask for these days.

I absolutely do not know how non medically savvy people negotiate hospitals. I feel like at every turn I am telling someone how to do their job in respect to me. It's exhausting- this continual advocacy. Some say it's because we are in the military health care system, but I think that is a side effect of a bigger problem. Jaime sat, visiting with me in my luxurious suite with a perpetual look of horror as I explained this was the nicest room I'd ever been in here at Tripler. She asked when the last time I was in a private hospital was. Never. Not me anyhow. I've visited friends in private hospitals. I can overlook the bells and whistles for quality care. More often than not, quality care these days feels like it merely doesn't kill you.

The preop visits to the surgical center usually horrify me. They are aggravating in that not only are you a bundle of nerves- but you are sitting in a room with other nervous folk waiting, waiting waiting to tic items of a checklist that cumulatively take a grand total of a half an hour, yet the visit drones on for close to 3 hours. You don't meet with any of the people you will be seeing the next day and they always deliver disappointing news like- you cannot eat after such and such time and oh- be sure to stop by the pharmacy to waste another hour of your time to pick up some nasty concoction to drink and prepare the bowels fro surgery. Oh crap I forgot about the bowel prep. More so I filed it away under something one doesn't want to think about.  To add insult to injury you have to start cleaning the pipes at 2pm the day before.  So the last dinner turns into last lunch and each bite chewed is chewed with the dawning realization that it shall be but a memory in a mere hour or so.

Whether Jaime was the good luck charm or slathered over my chart was some cryptic have mercy on this poor woman who contrary to what is IN this chart does NOT enjoy pain- the day progressed fairly painlessly. I even managed to squeeze in an annual well woman exam while Jaime waited for my pharmacy number to be called. Because amidst all of the appointments in the past month leading up to this surgery- it failed everyone's notice that I was overdue for a pap. Either way- it was taken care of.

We arrived home, I drank the lemony flavored make you poo goo and dreaded the next events.  Since I react to all kinds of things- I don't do the weird pre surgical wipes which cover you in a bacteria fighting film and supposedly cut down on post op infections.  I have theories on this and infection control in general- but I will keep them to myself. I generally am relieved to be first case as the assembly line processing of the ORs always makes me wonder. Either way- I shower night and morning before surgery. This whole not having hair thing means less toiletries for the hospital and not having to worry about crazy post op bed head. The sun is still soundly asleep when we begin our trek to the hospital. And less shaving for the OR team- woo hoo.

Despite my several pre op appointments and pre surgical arranging- no one is qualified or has the appropriate supplies to access my port in the OR. After not 1, not 2, but 3 IV tries- I have an IV barely hanging on between my ring and pinky finger knuckles. Obviously it doesn't matter that all blood draws will have to be below that( I guess out of the webbing between fingers) and I have an entire arm that cannot be used due to lymphedema risk- they have fooked away my good arm's worth of veins. It is too early to call the VAD team or wander down to oncology and just have them access my port. I shake my head. Fairly unacceptable. Had I not gone over this with pre surgical people- I would have just gone into oncology and had the damn thing accessed the day before. Instead I now have a greenish brown zombie arm as the multiple vein blows heal.

The only reason I dealt with it is because an IV is needed for versed. Versed is my favorite and the only reason you can get me anywhere near an OR. Within a minute of that injection you are waking up in recovery and everything is a little achy and foggy.  I woke up with 2 IV's. Both of which came out within hours. One as I tried to sit up, I look down and blood is dripping out of my hand and there's enough meds going on that you just look at it like- hmmm that's probably not ideal. That is another pretty green brown zombie bruise now. The other had clotted.  I spent many hours that night as a nurse whacked my hand and arm trying to find a viable vein- consistently ignoring the one I pointed her to and finally after Phil kicked her out of the room and another nurse came in- did they get blood from the vein that I had pointed out. Advocacy is exhausting.  I had decided then and there I was out of there as soon as humanly possible. Saturday afternoon was the earliest they would consider letting me out- so by Saturday morning I was asking to leave.

Any surgery sucks. Abdominal sugary has it's own set of not niceties. Standing up sucks. Walking sucks- as things get moving again- it most definitely sucks. Waking up and feeling like you have to sneeze sucks. As you try to prop yourself up to grab the pillow to hold against your tummy so your intestines don't get blasted across the room. Ah good times.  The first day home alone with the kids- I decided watermelon sounded good. So bella put the watermelon on the counter for me. The leverage needed to slice said watermelon was more than I had- so I asked Kiera to please take care of it. I went upstairs to nap- because on narcotics- leaving kids downstairs with a big knife and a watermelon seems pretty acceptable.  After a short nap- I return to Kiera- several bowls of weirdly sliced and crushed watermelon- a mop, a sticky floor and her brother sitting there eating watermelon while she giggled. Later we find out that she ignored the watermelon and it rolled off the counter and splattered everywhere. SO she put the smooshed watermelon in the colander and rinsed it. That melon is what her brother gnoshed on. Hence the giggling. She was on her 3rd round of mopping but from what I can tell- In true Gallagher fashion- she was just pushing watermelon juice around.

Today has been a week post surgery and I am starting to feel human again. We've had a couple hurdles. I'm on blood thinners(fun nightly Sub Q shots) and antibiotics.  I can lay fairly comfortably, sit fairly comfortably and stand up pretty straightish. I am very tired. After 4 c sections, I knew what to expect and my expectations were a little high. This led to many a melt down while Phil assured me I was doing fine. A 15 minute phone call should not require an hour nap- I blubbered. I am a human paperweight I cried as the fan blew a few of the girls get well cards around the room- and I'm failing at that. I'm very antisocial post surgically. It's probably best. I know that next week will be better and the week after that better and then back to the chemo routine. And that absolutely sucks. Getting better to get knocked back down. And then the sun comes up over the palms and the clouds drift by and I feel good enough to sit outside for a half an hour and enjoy it. And the kids give me hugs, gentle, careful hugs and kiss my stubbly head and that's why we get up and do it all over again. These wounds will heal and hopefully lead to something better.

Friends with Benefits

Over 20 years ago, I was the new girl in school. Middle School. In the middle of my 7th grade year- as if that year isn't a bundle of fun anyhow- we picked up and moved from Ohio to Colorado. It felt like everyone knew each other and again, I was the odd girl out. I don't know if it helped or didn't help that just a couple years prior to that we had moved across town in Toledo- I had already gone through being the new kid. As I learned- moving across the country and moving across town really is all the same difference when you are a kid and have to switch schools.

A few months after I got settled in Colorado, I was sitting in class chatting with my new friends and in walks a new girl. I so remember that feeling- the eyes on you, the whispers and then the one person who reaches out to say hi. For me that person was Addie. The sweetest, friendliest bundle of fun you could ever meet.  So I smiled and introduced myself.  And that is how I met Jaime. With an AI not an IE.

Jaime moved from Pittsburgh and well, when you are in Colorado- Pittsburgh and Toledo are like next door neighbors. She was easy to talk to and school chats led to weekends hanging out, to movies and talking about boys. Jaime's mom terrified me- she was a teacher and had a no nonsense approach to all humans under the age of 18. After a few months, she was my second mom. Her relationship with her dad was like mine and my dad's and he came from an Irish Catholic family- just like me. Her big sister Kellie became my big sister.  In high school, Jaim decided to try out this program called IB- International Baccalaureate- it was good for colleges and had an emphasis on second languages. She already had a leg up as they regularly spoke Spanish at home. Well that meant I was totally going to have to try this IB program. Months later Jaim abandoned me in the IB program for the AP program. Something I may not have been able to forgive, except while in the IB program Jaime dated this kid Phil Mallory. I did not like this Phil Mallory oh no I did not. I thought he was a bit of a jerk and a big shot.  Well Jaime convinced me he wasn't and we spent many after school hour watching baseball or football games featuring Phil Mallory.  It didn't work out between them. But fortunately for me it was an amicable split, because that Phil Mallory became my life line and entertainment for the rest of high school.

Jaime was there through Bob's cancer and her home was one of my refuges. Baking cookies, her mom yelling at us to clean up the mess. Years later, her mom's secret scone recipe was gifted to me- and our family tradition of Scone Sunday was born.  Their home often representing the normal family  life I missed. When dad died the week before graduation, Jaime's family made sure I was included in the celebration since all of our party planning resources had been dedicated to planning funerals.

Jaime and Kellie mentored me in spanish when I decided to spend a summer in Honduras. Which is to say I listened to them speak. Kellie even made me a mix tape to listen to on my journey. Years later, a resident of Las Vegas- Kellie was the only reason as a newly married wife- I was comfortable with all the trips to Vegas. I received more than one tactful conversation from a concerned military wife who mentioned Phil may be spending a lot of time with someone in Vegas. Much relief ensued after much laughter when I explained she was family. We were at CU together and Jaime held my hair back on more than one occasion and was my wingman when Phil showed up with spare AF cadets for weekend visits.

Jaime and Kellie were there to celebrate when I married that Phil Mallory- despite paltry notice and busy schedules. Jaime helped decorate for my first baby shower. Her parents became abuelos for my kids- always sending treats and cards. Kellie housed us an our bird flu episode on our great journey to the Aloha state. Every trip home to Colorado meant a visit with Jaime. It truly was a family reunion when Dr. Jaime married Dr. Right, all of us floating around a lazy river in the hot Arizona sun.   Jaime and Alvaro got more than one panicked call from me- Phillip swallowed a screw- what do I do? Do you think I should Vbac or just C-section, again? Lily has Cancer Jaim- what do we do?   It was Jaim who told me to get off the damn computer, stop researching and go be a mom.  When I traveled to Colorado after my mastectomy- she plied my kids with marshmallows, chocolate, graham crackers and fire- while Alvaro and I discussed the finer aspects of reconstructing.

Jaime has been telling me for years to get my ovaries out. I trust her. I know it needs to be done. There is nothing better than having a good friend who is a doctor looking out for your best interests when you have LFS. You get the benefits of knowledge and friendship. She's been telling me for years when I schedule the surgery- she'll be there.  Months ago I kept getting patient email reminders.  She knows when tough love is needed.  So when I finally scheduled the surgery, I shouldn't have been surprised that the next email I got from her was an itinerary.  I have to say having her here might be the only thing that's getting me through this. Part of me isn't sure that I've been a good enough friend to deserve her or her family- I know they have been through many tough times and I haven't been any support.  But I am grateful. I am so glad that 20 some years ago I took a chance a smile at the new girl because she has made such a huge difference in my life.