September 19, 2014 - Finely tuned lens

I have the luxury of working with children with a cancer diagnosis (plus fatal genetic diseases). It’s amazing how much you can glean about life simply by spending the day with a child, and parents of such, who is facing death. They, both parent and child, are a special breed of human. One that in a single hour of time when the diagnosis is confirmed finds that their lens of life becomes a little clearer. A bit sharper and more finely tuned. Pin point on a single subject and less blurred with the mirage of previously worthy landscape. Some things fall completely off the canvas all together to be replaced with more worthy brush strokes. The all-consuming just became the trivial.  The unimaginable becomes the everything. And the people of your life circles suddenly become more transparent and more intentionally chosen. It could be an incredible life study, these subjects, that could glean a wealth of guidance and insight in finding that “purpose” our culture is so notorious for “hamster wheeling”. There  contains a few examples of the human spirit going terribly wrong, but there are oh so many examples of the human spirit doing life as purposed when confronted with the uncertain.

It’s so easy to get caught up with the to-do lists of this life, the struggles of day to day adulthood, but 1 hour with these kids can bring you to your knees in awareness of what this life is all about. You become better at doing life by observing them navigate theirs. These are a few things I have learned in the process of brushing up against their lives and by navigating it myself a few years back:

·       IV poles are made for decorating and riding on for the IV pole parade.  Nothing more, nothing less.

·       Anything can be made into an arts and crafts activity, including Band-Aids and IV sets.

·       Bugs Bunny Band-Aids are the only way to go.

·       Folding 1000 origami cranes can give you “luck” when you think you are going to die.  And a 9 year old will spend every waking hour accomplishing it.

·       A simple lab result can make or break your day- and you hold your breath from the 30 minutes from when it’s drawn until resulted.

·       One sentence from your healthcare provider can either devastate you or help get you through one more hour.

·       It’s totally fashionable to wear two different colored socks and as many ruffles as your tutu skirt will hold.

·       You will never know what you will choose until that very moment. No matter how much you think you know yourself.

·       In their mind every cough or sneeze is a potential relapse. Don’t down play that.

·       Time doesn’t always heal wounds. Time does provide opportunity to make memories that help sooth wounds.

·       Bald heads represent triumph- not old age.

·       IV lines, bruises, shunts, g-tubes, and rashes all at the same time can be badges of honor.

·       Getting the gas bill in the mailbox when you know you have to pay for daily appointments for the next month can bring you to tears.

·       Parents relish having one more day where the kid drops the puff cereal all over the carpet.

·       You can never talk about poop too much.

·       Elmo is universal despite language barriers.

·       You can never eat too much ice cream.

·       Marriages can be lonely when chaos is in your realm. Not every marriage will survive. Some come out stronger.

·       All teenage girls want to go to the prom…with hair. All teenage boys want to go to the prom with a girl…with hair. Wigs have come a long way!

·       Santa can show up any time of the year and princesses are magical.

·       Siblings need time to process.

·       Parents can find delight in hearing their children fight, because at least that means they are still alive.

·       Healthcare providers cry after work too. Tears don’t always make everything better.

·       “Rainbow Connection” is the absolute perfect song for a memorial service.

·       Time at the art table with play dough can motivate you to come back in for one more infusion.

·       You will put purple dye on your tongue to kill infection if I successfully convince you it is like you “just ate Barney”.

·       Big clown shoes make you laugh.

·       Your job isn't even 1/8th as "sucky" as you think it is, these parents would give a million dollars to trade shoes with you.

·       20 medication doses in a day are 19 too many.

·       This event is a stress for parents that parallels little else. They won’t tell their friends, but trust me.

·       Choose friends you actually want to endure life with.

·       3 a.m. is the perfect time for a game of hungry hippo.

·       Kids are more resilient that adults will ever be.

·       Even a bottle of Tylenol can break the bank.

·       You never really have it all figured out.

·       An hour with a child facing premature death can teach you more about your own character than anything else imaginable.

·       Children can vomit six times a day and still find a way to pull every topping of the pizza slice in order and with purpose.

·       Music therapy with a paper cup, ukulele, or bongo drums can be the highlight of the clinic appointment.

·       You can never give out or receive too many hugs.

·       Giggling can turn to tears and back to giggling in 20.4 seconds.

·       Footed pajamas carry spectacular cute factor when combined with a bald head.

·       Surround yourself with people who get it and want to positively influence your life. Remove yourself from people who don’t.

·       God doesn’t always promise healing, but he does promise the opportunity for incredible positive impact on those involved.

·       An empty bed is heart breaking.

·       Grief is life changing. So is laughter.

·       Angels and warriors come in all shapes and sizes.

·       Being surrounded by these kids is totally worth devoting your life to!

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September 6, 2014 - Boots and boobs!

I have to say I am looking pretty sexy right now. A skirt, newish boobs, freshly styled hair, polished nails and toes….and wait for it… a new highly fashionable cast boot! It’s black, sleek, velcro-covered with a matte finish. Style at its finest. And the timing for such style and sophistication is just perfection.

You will recall when I found out I had to have mastectomy surgery number 5 for the failed implant that I really wanted to wait until after swim season since I was doing daily physical therapy in a pool for my foot/ankle. Also, I had my summer vacation planned with a trip to the beach. I really wanted to go on that trip and not have water restrictions that come after surgery. So we got the surgery scheduled for early October and decided to finish out the summer and my beach trip intact, sagging boob and all, before scheduling the surgery.  That plan was going perfectly well until I started noticing my foot was not only not improving despite multiple interventions but actually was becoming more constant and severe. I had experienced exactly 1 pain free day in 4 months, and this past week I had several days where I was moved to tears by the time I not so gracefully, just shy of face planting, hobbled my way to bed. On a few occasions, no less than five, I woke up in the middle of the night for a bladder piddle and slammed myself into the door frame to keep myself upright. I decided this could go on no more and me retain any sanity on the other end.

Schedule an MRI. Wait 3 hours for results. Land myself back at the orthopedic office the following day to get steroids injected into the interior side of my heel (and let me complain that I didn't even get a sticker or lollipop). Splints to wear while sleeping followed by the Provider pushing me to get a hard cast for the foot.  While I was super excited to try absolutely anything to get me some relief. I was drawing the line at the cast. Step away from the spatula and Plaster of Paris, Woman!

I begged and pleaded explaining how I had successfully delayed imposter surgery for this beach trip and how I very much needed this trip to happen with me at least dipping my toes, if not a full submersion, in the tepid surf. She saw her reflection in the pools about to spill over from my lower lid and found herself guilted into not a plasterized masterpiece, but instead a sleek new booted accessory of black overlay with the subtle aroma of plastic undertone.   We agreed I would wear it off and on while on my trip, but then commit to embracing it full-time at my return home. So I’m lugging this boot everywhere I go, currently sitting under the car dash next to a lone flip flop as we traverse the interstate. It’s excited to see the coast for the first time. I’m excited to get there so I can take it off and chunk it into the back seat. I haven’t told him as of yet that this is his fate. Our secret.

Disclaimer: I truly am thankful for the boot (and wearing it as much as possible) considering the alternative is a cast, and I’m even more grateful in that it gives this foot a full month to heal before I have the boob surgery because a bum foot and a bum boob at the same time will make me a little more frustrated than either alone.

As my boss said earlier today, “Sally, you have the best luck!” (and that most certainly is true, but who else can claim a boot that matches their beach chair - though admittedly black goes with anything). She’s absolutely right! I am a masterpiece of health ( hardly). A pure specimen of genetic perfection (not even close). My body celebrates change and transition with such frequency that the compass is in a constant spin. It has an uncanning ability to keep myself and those around me always guessing at current state. It would be an absolute marvel, if it weren't such a bummer.

Boots and Boobs. They seem to go hand in hand.