Saturday, November 17, 2012

The average time between Mallory hospitalizations= 6 months  +/- 179 days.

Wednesday night Lily was not feeling well. Sometimes when Lily has to air in her tummy- it's like the world is ending. Normally- in a 7 year old- such behavior would not be tolerated- but she is given a minute amount of slack since at one point in her young life she was split in half and opened up. I knew we were headed for trouble when she didn't eat dinner. It was pork tacos- not much can possibly come between Lily and as many bites as possible of pig. When I cook pork in the crock pot- she walks into the house and begins to jump up and down screaming- I LOVE pig!! Wednesday was no different- except after 2 bites of pig- she went and laid down on the couch. My mommy sense tingled- we were in for a long night.

After her second time waking me up- I took her downstairs to sleep on the couch with me. I knew Phil was flying the next day and I needed him to get enough sleep. We spent the night with Lily wrapped around me, sporadically screaming and kicking- falling into sleep when the pains passed only to wake up and vomit. I gave her extra hydrocortisone and hoped it would be like the week prior- a little bit of puking followed by a day of resting. Not so much. While I was getting the other 3 ready for school- I gave her another big dose of hydrocortisone. It came right back up. Ugh- I know what this means. I decide to let her tummy rest- get the kids off to school and give her meds one more try. Although she manages to swallow one pill- the pain is bad and she is asking for the shot. When the stomach pain is severe enough for Lily to ask for her IM shot- that's speaks volumes. I call her endocrinologist. She tells me what I already know- it's time to give her the shot which is an automatic trip to Tripler and a 24 hour observation period. I get out her shot and manage to stab my finger with the needle as I am opening it. Ugh. Now I have to find an appropriate sharps container- which you would figure in a house with a diabetic wouldn't be as tough as it was. Lily is writhing around begging to go to the hospital. I am beginning to wonder if there is a little man with a funny name I can give my first born to that will alleviate this curse incurred by our family. I get her shot loaded up with a new needle and although she says ow!!- Lily doesn't flinch. Now it's time to pack a small bag and hope for the best. I decide to travel light, which is stupid, idiotic, and just plain silly. I know better. Phil later laughed at me saying- yeah- that's quality denial right there- kind of like the time I drove Phillip to the acute care clinic thinking they would just prescribe up some insulin and send us home.

Our time in the ER, expedited by a call from our endocrinology team was a swift 5 hour visit before we were transported up to the ward.  All hopes were on this being a quick virus- yet as the hours dragged on and there was no fever, no more vomiting, or diarrhea- flags were being raised. Lily writhing around in pain every time a doc walked by bought her a trip to morphine land- which although funny and a relief from pain- makes a mommy cringe. If they are giving the 7 year old morphine- we have more to worry about than a virus.  That also buys us a trip down to xrays to make sure there isn't a major city or anything residing in her abdomen. All of our favorite nurses swing by to check on us- even Lily's surgeon stops in to say hi. Always a good idea to have her near.  I watch the clock until the approximate time Phil is supposed to land- I get the text he is always so kind as to send and reply with a request for him to call when he is done debriefing. I know he will be upset I didn't tell him sooner- but flying is the one part of his job that he loves- no sense in us both sitting around worrying for that hour and a half. He calls right away and asks if Lily is doing worse. Um- kind of.  He says he will be over to Tripler as son as he can. Hate those calls. I hate that I keep having to make them. I hate that people don't know what to say and that we have become so accustomed to crisis mode- that it is our normal. When something becomes your normal- people assume you are fine and can handle it. If it weren't for my neighbors and the friends we have at the hospital- we would feel completely alone in this. In a world where Twinkies meeting extinction is a crisis, not sure where we fit in. Oh well- back to what we do - just keep swimming and be grateful for our time together-even if it is in a hospital room with the incessant beeping. 

When Phil gets to the room, Lily has a look of horror- I want mommy to stay!  Our routine in the past meant Phil spent most nights- I don't do well in the late hours. I reassure her that daddy cannot stay- he has to work tomorrow.  He makes sure I have food for dinner and I get him up to date and he heads home to relieve Monica from babysitting duty.  My IOU list for her is so long now- I don't even know where to start. Lily and I settle in for the night. When the meds wear off, she is still in a lot of pain. By morning, the situation is the same- which isn't a good thing. At least it's not worse. Phil drops the kids at school and brings me coffee. I love that man. He too sees the score. The time vaccuum that is the hospital takes over. A particularly bad wave of pain buys Lily a CT scan. Fortunately the new ped oncologist is the ward attending- she is fabulous. I get the eerie feeling the powers that be are at work aligning the forces for Lily and it is reassuring and unsettling all at the same time. The CT has to be done with contrast. Oh happy happy joy joy. One sip of water instigates 30 minutes of writhing- 32 ounces of contrast may just kill her. We load her up on morphine and zofran and get to work. After 2 sips she looks green and just shakes her head. Phil offers her a movie- she chooses Tangled. I have an idea- a wonderful, awful idea. I ask Lily- How about every time they say hair or light in the movie- you take a sip? She shrugs- Ok. Which word do you want to do? I'll do both she says. Phil is shaking his head at me- you are totally going to hell he whispers, for the contrast drinking game. All I can figure is that when she gets to college- she will suddenly have the memory and then she will have the resources at her disposal there to effectively deal with it. After all she will have perfected the drink vile stuff and try not to puke part. We made it through the contrast and get down to CT- which showed a little thickening of the appendix wall- one more thing to keep an eye on and several swollen lymphnodes which could be due to several factors- all of which require a careful watching period.  So that's where we are. We are waiting and watching and hoping for the best. Phil spent the night last night- I came home and crashed with a Bella who is obviously distraught that her roommate is absent, Kiera is busy retreating and withdrawing- that's how she handles it and Phillip finds it to be a great reason to be alone and watch inappropriate programming on television. SO I guess it is kinda normal here.

Wednesday, November 14, 2012


Phil looked at me this morning and said- you need to start blogging again.
My mom told me to months ago. But it is hard. It is hard because there are so many things I have to say that aren't pretty- truths I don't want to be the one to put out there and a whole lot of negativity and sadness. When I blogged during Lily's treatment- my goal was to find the up side to every story- every event. It became a positive, reaffirming experience. I started many blog entries in the past 6 months, only to get 2  pages into a rant and find there was no way out. No bright side shimmered at the bottom of the page and I actually found several more questions to address, so I logged out and went about the pile of chores that always seem to call to me.

6 months ago my life changed. I am glad to be here, yet every day live with the shadow of cancer. The shadow grows murkier with unknown aches and pains, any bout of nausea or headache then recedes with the symptom. I know this stage- you get through it. It just takes time for all the raw nerve endings to desensitize. Each time it takes a little longer to get back out there. My brother died when I was 15. I was ushered out of the room- so I wouldn't see him change colors- as the last of blood settles- no longer being pumped through vital tissues. I was sent to my room so I wouldn't see the van come to the house and take away my brother in a body bag. Unfortunately, my room overlooked the front of the house. I only had to suffer through a few weeks of school after that before summer break. I read nonstop, uplifting books like Elizabeth Kubler Ross's - On Death and Dying- trying to rush through the 5 stages of grief so I could get back to normal- or what we call it now- new normal. I ransacked the tapes my brother made for his walkman- getting rid of the 2Live Crew but salvaging Europe- remembering how we played the Final Countdown over and over in the hospital room. School ended and I was lucky enough to get to go to Hawaii for the summer. I wasn't supposed to go, didn't want to go because it meant missing Volleyball practices. It was my parents' 20th wedding anniversary celebration- postponed because they were dealing with a child who had a brain tumor, they couldn't very well leave me at home alone. 3 years later we got to rehash the process when my dad was diagnosed with his brain tumor. He collapsed in California and my mom and I travelled there. My uncles met us there. I don't remember a lot. I remember a nurse trying to keep me from seeing my dad as he crashed and they were wheeling him off to surgery .  I remember feeling sick of people trying to keep things from me that were pretty darn obvious. I remember drinking lots of coffee- they had these new fandangled cappuccino machines in the cafeteria- throw about 5 pumps of irish cream syrup in there and I was good, anything but Grape Soda.   On the way into the hospital when Bob was sick, there was a soda machine- I lived off of grape soda there. To this day- I see grape soda and my chest seizes up a little.  It's been over 20 years- it doesn't get easier, you just learn how to feel- differently.

It took months after my surgery before Phil could look at me without complete and utter sadness. It broke my heart. I know what it feels like to be on that side. I remember Bob telling me and mom to stop looking at him that way- he just wanted to be normal. Lil Phillip is so much like Bobby- it's such a wonderful and sad feeling all at the same time. But the look- it absolutely breaks my heart. I know the love and the sadness behind it and I hate to be the cause of it. I know a bit about what Phil is going through- watching him jump out of airplanes and fly rocketships- our history is filled with reminders of mortality. I know that the thought of losing him is more than I can handle- so I know why his eyes are so sad. I think that's part of the reason it was so important for me to leave this summer. I needed to be around family- but I needed him to be able to work and if I was home- he would have wanted to spend every free second with me. I also needed to prove that I was Ok- to myself.  Of course his work has been kind enough to pack on extra jobs and responsibilities since I've been home- time together is even more at a premium. I know how tough it is to get back in the routine- to focus when your priorities have been upended. He has the overbearing need to work harder at work to make sure we have health care. Because now in a family of 6, 3 of us have major medical concerns. "Normal" time is precious. So no- your social hour at the bar is not a priority for us. It becomes very very difficult to play the political games that a certain level of employment requires. You have to fight to find the balance-and it is complicated by others who think they have any idea of what and how you can deal with everything. The first work event I made it to was painful. Absolutely painful. It was great to see some old friends and in usual form- a few ladies that I've always enjoyed kept me company.  Ladies who can hold a conversation without tilting the head and asking- how are YOU? I'm fine. But how ARE you?    I'm down a boob- but I have this neat prosthesis majiggy thing that is heavy and hot and my hand swells sometimes and I do notice that everyone looks at me, my chest, my arm then back to me, so well you know- I'm fine.

It's hard that people don't understand. It's hard that you lose friendships over it. Whether it's because you can't deal or they can't deal- the fact is that friends drift away. You have the same few reliables and you spend all of your time worrying and wondering when they too will get tired of all the crisis- because everyone does- regardless of whether or not you have any control over it and secretly you hope the crisis is over- but part of you knows it's not. It's hard having so many penguins on your iceberg that you don't even realize when some have fallen off because you are so busy keeping others from jumping on and the ones you absolutely need from falling. It's hard when your husband takes a lunch hour to meet you at doctors appointments over life and death issues to know that he is losing penguins. Or that after 2 weeks of not seeing his son, taking him to a football game instead of drinking in the bar with the guys earns him a public rebuke. But these are the choices everyone makes. Everyone has to decide what their priorities are. I think the tough part is when you are criticized, publicly or otherwise for your choices when those criticizing do not have the first idea what you have been through. It is why I teach my children to consider others' circumstances before rushing to judge. So in addition to making the choices- you have to be the sensitive party and understand that some people don't get it and do what's best for you and your family anyways and take the heat. That is where the true turpitude comes in, you turn the other cheek- you continue to do your best and you continue to enjoy the hell out of your family while you can.

When my dad was sick- I used to come home at lunch or ditch class just to hang with him. We had some great talks. He didn't try to protect me, he knew he was dying. We went over everything from where he thought I should go to college(far, far, away) to how to deal with finances( make what you need to have fun and enjoy life) to what the weather might be like for graduation(probably sunny). When times get tough- I often rely on my memories of these talks.  He really liked Phil. That year we had a difficult time fitting our class schedules together- Phil and I didn't always have  the same time off.  My parents' relationship wasn't perfect- but they were a team and they were perfect for each other. They were real and honest and goofy but most of all they loved us and let us know. Phil wasn't used to it- we were an anomaly for him. They were a standard for our relationship- because we both know neither one of us is perfect- we are just perfect for each other. We faced many hurdles and heartaches. We know each other better than anyone. So it came as a big surprise one year- after we had been married when he told me something I didn't know about him.  I was taking the anniversary week of Bob and Dad's deaths particularly rough. My husband pulled me close and said- You know senior year, sometimes I'd just go over to your house at lunch and fix a peanut butter and jelly and talk with your dad, he was a great guy. Those talks really stuck with me.- It's in moments like that that I realize how important our moments together are. I couldn't tell you or even remember half of the BS we were dealing with classes and graduation during those months- but the impact of a few conversations we had will stay with us forever. So I take the time to try and have these talks with my kids and sometimes he ditches roll call to hang with his son- and that is all that matters- those are the choices we make that make a difference.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)