Thursday, April 25, 2013

So far so good

It was 4 am. There were sheets of warm droplets coating the homestead. The man of the house prepared for a major check ride at work and I laid there quietly praying these drops would be a good omen for the day. Rain means traffic. Traffic means delay. Delay means stress. But it also means rainbows.

In a wicked turn of events- I called the afternoon before to confirm Lily's Tuesday scans. I didn't sleep the night before- scans do that to me- and they aren't even mine. I knew the next week was going to be long, the scanxiety bad. The nurse in the sedation center asks if we could come in that afternoon for a physical- then they could squeeze us in Wednesday. My gut reaction screams- do it. Well- I tell him- I already scheduled the physical at our clinic this afternoon. Great! He says- then we can do the scan on Wednesday! Well, um- my son has an appointment- there's no way my husband can get off work to help transport the cretins- I just didn't know if I could make it happen- was there a rush? Well no, he says- but Wednesday is wide open- she'd be the only kid up there. Ahh. That's not a bad turn of events- flexibility. I made some calls. My neighbor agrees to take the kids to school( Lily would have to be there by 7am) and pick up Phillip and bring him to Tripler for his 1pm appointment. I call endocrinology- because I am thinking half sedated- starving Lily at a 2.5 hour appointment - probably not a good idea. I ask- knowing there's no chance- if there are any openings before noon- say somewhere in the 9-11 window(precisely when Lily's in her scan).  I explain the reasoning- she checks and says they will make it work. SO that's when the waterworks start. I hate asking for help and when people are so accomodating- it really gets me. I don't know what that says about the system(that everything is difficult) or me(I've learned that everything about the system is difficult) but I seriously am grateful when everything doesn't have to be SOOO painful for everyone. SO I call my neighbor back to let her know- she is off the hook for Phillip's transportation- I will just take him with me. He will miss the whole day of school- but this will save us like 3 hours travel time and parking nightmares in the long run. 

We get to the hospital and go to admissions. We are nearly late due to the rain phenomenon and traffic. Admissions- after long chats and much searching- finally realizes that the policy changed(this is the 3rd time- so roughly ever other year they change this) and that Peds Sedation does their own checking in again. Great.  We get her checked in and nuclear medicine is running behind. Meaning- they got stuck in traffic too. I keep Lily entertained- One of our favorite child life specialists stops by with 2 new Disney Barbie friends- Genie and Ursula- both huge hits with Lily monkey. I try to reach endocrinology- because I am going to get put on a list I really don't want to be on if I don't show up to this appointment. I leave messages. Ugh. I give the teenager money to run and get food- he actually brings said food back up to the sedation center- you seriously can't be eating that in front of your sister- she's NPO. Oh- sorry. Go to the family waiting room. Ok. The nurse offers to show him- Phillip says he knows where it is- the nurse shows him anyways. The kid just managed to go from floor 1 oceanside to floor 6 mountainside on his own- he may be dense but I think he can go out the hall and to the left and find a seat in the waiting room. 

It's finally time to sedate Lily. I remind them that she's a tough stick- they know the game plan is to dart her first. Phillip peers into the treatment room as she gets wonky she looks right through him- calling his name. He laughs. She finally dozes off- she looks dead-he says. No that's not what dead looks like- I tell him- that's what passed out looks like. They wheel her out and she desats a few times- it's gonna be one of those days- they might have to put a tube in- oh well- better than the alternative. We head down to endocrinology armed with more apologies. It all worked out. I have Phillip present his findings after he studied his 14 pages of blood glucose and insulin values and the doc is impressed. Mind you, the appointment isn't any quicker- they are just long, thorough, tedious appointments- but it is fairly painless. By the time we get back upstairs- lily is awake and her head is bobbing around like a buoy.  She begins her- I want to go home- I want to go home- chant. I'll take it over the I want to go home screaming.  She starts to perk up- she keeps saying she doesn't want to drink. Phillip buys her a bottle of water. I have a huge headache- I take a giant gulp and encourage her to take a sip. She takes a sip. The anesthesiologist checks on her and asks if she's peed and is drinking. The tech- who saw Lily drink but not me nods. They examine the water bottle- Phillip looks at me with that smirk- he knows better- he knows what needs to be done to get us out of here and fortunately , Lily is still out of it so she doesn't say anything. Lily- who when asked when she had her last clears that morning says- 6:07. and I say 6. The tech laughed and says 6 it is. No, it was 6:07 says Lily. Oh well, no matter when the procedure was delayed an hour, so all was well.

We manage to squeak out of there- beat traffic and get back to school in time to pick up Kiera from Cheerleading.  The phone starts ringing- the eerie sci-fi ringtone- it's the hospital. I can't bring myself to pick it up. The rain passed- it's beautiful and sunny- but no rainbow. The phone chimes- there is a voicemail. I take a deep breath- here goes nothing- it's her oncologist- everything looks fine- nothing of concern- so now we watch her hormone levels- she'll talk with her endocrinologist and we'll go from there. Now droplets are falling again- but it's ok - it's sunny out and I got my rainbow. 

Tuesday, April 23, 2013


I have purposely been avoiding scheduling Lily's PET scan. I admit it. It's no secret. It hasn't been for lack of trying- I tried a month ago to make the necessary calls and have not heard back- so I carry on.  It's birthday season and I selfishly wanted to celebrate my girls' birthdays with them, without the looming doom of a scan hanging over our heads. Last year I went ahead with the flipping scans- and well- see where that got us. 3 surgeries- lots of headaches and appointments and yet somehow bought me another year. Yes it has been a year. Had I chosen to do chemo- this past year would have gone a lot differently. I am fairly happy with the way it went. After all- it was on my terms and relatively normal. SO to wrap up the year in the spectacular normal fashion- the plan was to celebrate 3 girls' birthdays in one month's time in addition to a week long TDY of the husband, multiple concerts, events, activities, etc. So as I approached the final stretch last week- squeezing in a mandatory last minute parent meeting for the 8th grader's Rites of Passage ceremony- when the phone keeps vibrating- I see Tripler is calling. I figure- NOW they want to schedule the PET scan- well they will just have to wait- I am finishing birthday season. After 7- I get home and check my messages- it's from our endocrinologist- I completely missed out 3 hour appointment for Lily and Phillip that day and she is worried something is wrong- she will call back tomorrow. I can't believe it completely fell off my radar. I know I should have picked up on it when I refilled Phillip's insulin last week and it was the last refill. I feel horrible and yet somehow relieved because I hadn't had 2 spare seconds this week- so had I remembered the appointment- I don't have any idea how I would have fit it in- trying to fit it in would have caused tons more stress- and so hopefully first thing in the morning- I could call and apologize profusely and reschedule.  But the next morning was Kiera's track meet and it wasn't the most appropriate environment to call, so I waited. Kiera asked if I would sit with her and I did. Having a 13 year old really makes you appreciate when the 12 year old wants to be near you- I know these moments are fleeting and the days are numbered- so apologies would wait.

After the meet- we make a quick trip to walmart- possibly the 8th such trip in so many days- taking care of goodie bags and party items and presents.  Tripler and Walmart usually fill me with the same sense of foreboding and ironically neither one gets beans in the way of cell signal- yet somehow I am in the center of walmart and my phone rings and it is Tripler. Ugh- so I answer , it's our endocrinologist and I make my apologies- she doesn't seem too angry, just worried. She really needs to see Phillip- can we squeeze him in next week and try to get Lily in after her PET scan. When is her PET scan by the way?  I recount my inability to get a hold of a human and a call to one of my insiders revealed the order wasn't in the system- she says she will take care of it. SO there that is again looming. It also adds a few hours of collecting Phillip's blood sugar numbers and downloading pump data and that kind of fun to the weekend. It is a small price to pay to keep him healthy.

The weekend passes in a blur and like that, Birthday Season reaches it's conclusion. I am relieved and exhausted. Monday is to be the day of cleaning and catching up on housework- but a last minute email from school shows a need for parent help in Lily's grade. Plans change- I spend 2 hours helping 2nd graders- in the pouring rain- scrub and gut gourds that will become ipus for their May Day celebration. My hand begins to swell- whether due to rain or overuse- who knows- one of the minor side effects of having a few lymphnodes removed but I know I have to take a break before it gets worse. This upsets me- I know I have to take care of my body and listen to it's limitations- but I don't like being limited. SO I head home and crunch the diabetic's numbers. He's doing pretty well- he's at least taking his blood sugars more regularly. We still have some highs and some lows and tighter control can be achieved- I can now predict how our doctors visits will go. I print out the 14 pages of blood glucose numbers and insulin doses and highlight the highs, lows and any areas of concern.  When the boy gets home- I will go over the numbers with him and we will discuss areas that we can do better.  It's time to get the girls. It was a day "off " for Phil- which meant he worked from 8-2.  I get a message from him and a text. Hmm either he's going to be late(likely) or something is up(likelier). It turns out he got a message to schedule Lily's PET scan. I get off the phone and call to schedule while I am waiting for Bella to get out of Hula. Kiera and Lily jump in the car. I look at the clock- 3:30- only a half hour to make the call- probably not a good idea to wait til tomorrow. They have an opening on Wednesday. THIS Wednesday? They had a cancellation and can squeeze us in. The catch- I'd have to get Lily a physical by 8 am on Wednesday. I laugh- it's 3:35 on Monday- I won't even be able to get a hold of a human probably by 8 am on Wednesday not to mention having to reschedule Phillip's appointment or taking him to Lily's scan and dragging sedated Lily to his appointment- uncle- what's the next available? Next Tuesday. Ok- let's do that.  I call to make the physical- it's now 3:55- I don't expect to get a human 5 minutes before clinic closes- but I do. She can squeeze Lily in tomorrow at 3:40. Ironically we would have been able to do the Wednesday slot- but back to aforementioned scheduling conflicts. It is tempting to try and knock 2 birds out with one trip. Especially since I know the next week will be filled with scanxiety- the moments of panic as the fear of potential catastrophe might be revealed. But I choose to spread the stressful wealth over multiple days.  

When I get home- Phil is there working on his May schedule bids for days off. I am just happy he has the potential for days off again and a little schedule flexibility. May is a busy month of kids activities. I tell him the scan plan and he gives me that look. You know I am off the island that day? I look at the calendar- the 30th is empty- if it's not on the calendar- it doesn't exist. I write in 10am PET. I shrug. We both know we have a horrible track record with scans, injuries, etc when he is gone. The doom cloud settles over my head.  It is what it is.  Do you want me to stay? I am trapped between reality and superstition. Common sense says his presence will not change the outcome of the scans- but superstition overrules that with experiential data. I can handle it- the only other option is Wednesday- which he has a check ride on so technically he is off the island then too- or putting it off until June. It's time- this journey started in November with strange stomachaches. It's now been months since the MRIs. As I tell everyone else when facing scanxiety- it could reveal something bad- by not scanning- it doesn't make the bad go away. It could also reveal nothing and then you have a couple of months until you have to deal with scanxiety again. So fingers and toes, knees and elbows crossed that insomnia and scanxiety are the worst things we face in the next week.

Monday, April 1, 2013

Springing into Action

I love love love Spring.  It gets a little overwhelming at times with all the birthdays and Easter.   My birthday marks the time of year I remind myself to get my annual checkups. No wonder I dread my birthday- yeesh. I don't dread it because I am a year older- I have long cherished every year I get to celebrate. This year marks the first year I have visible gray hairs. Every so often Phil and I compare- he's winning by the way!  It just compels him to be more dilligent on shaving his head- me- I pluck the rogue ones that draw attention to themselves- but mostly I'm not bothered-yet. To me this is a right of passage that so many in my family- so many with Li Fraumeni Syndrome are robbed of. I am not in a hurry to cover them. Like the wrinkles that crinkle at my eyes and catch my tears from time to time- I have earned each and every one of those wirey sparkly bits of tinsel. And just as with decorating the Christmas tree- too much tinsel is a bad thing- and when that time comes I will proudly cover my badges of courage just as I have learned to cover the emotional and physical scars of this journey.

It was a year ago that I made an appointment to have a lump on my arm checked out. A little hard lump that I noticed one day while driving. It became a compulsion- every time I got in the car- I would feel it. Never bigger, it moved slightly when prodded. But my gut said- it has to go, get it out.  It made the other lump- the one that would come and go with the monthly moons seem a little more ominous. Common sense tells you to deal with it- ignoring it will not make it go away. Yet in your heart- you have to be ready to face the battle ahead and each time you go to battle- a little piece of you is chipped away- sometimes emotionally- sometimes physically - either way- it's a little tougher each time. It doesn't get easier because you have done it before. It's not like riding a bike or something you can practice at and get good at. There are no Olympic medals for fighting cancer- although if you know of any celebrities who have gotten cancer- you know all cancer warriors are not equal and there are very different battlefields.  Such is the battle of life.

We had a birthday party on Saturday. A last minute invitation from an old friend. The lateness completely unintentional and a testimony to our hectic schedules- as it was a beautiful hand delivered message in a bottle invitation for a mermaid themed beach party. How could I say no to that- despite Saturday being Phil's only day off- the only chance to paint eggs as a family and have Easter dinner- since he was working Easter night?  So I slightly adjust the day's plans to include a couple hours at the party- managing beforehand to paint Kiera's nails which I had been promising to do for a week with cute Easter patterns and in 24 hours the theme would be late. We arrive late to the party- and just in time for me to escort 5 giddy girls down to the water.  I nod to the other party moms and am somewhat grateful to not have to engage in chit chat- it's not something I'm good at. I notice the birthday girl's mom pulls me over to introduce me to another mom who is sitting by herself at a table. I smile- but the girls are making a beeline for the waves- I excuse myself. The girls are soon cold and hungry and we make our way back to the party.  I get my girls plates, grab a quick bite and start the potty trips- oh the life of a mom!  Before I know it- Lily is laying on the picnic table claiming to be dying of stomach pains. Bathroom trip #85. Including me and a bathroom maintenance guy having a pretty descriptive discourse as to the nature of mess he would be finding if we were not expressly allowed admittance to the lavatory. He politely explained it would be 5 minutes. Lily screaming that she had to poop helped.

Upon returning to the party- party mom had noted  the rather volatile nature of my middle daughter's temperament and proceeded with the cupcake ceremony- always an event that can soothe the most grumpy of beast. It was time for us to leave- I told our host when we arrived that our departure would be premature and explained why- there was a pricey non cured vegetarian fed ham awaiting my attention.  She pulls me aside and drops the bomb-  I know you have to leave- but the mom I introduced you to earlier- um well - I think you have a lot in common and would you mind talking to her for a few minutes? I hesitate. A few minutes won't hurt- I can get the ham on the table by 7- it's not a school night. She continues- her older daughter has leukemia and I think you could really help her. It's like one of those movie moment realizations- I look over and wonder how I missed it- a woman sitting alone- closest to where her younger child is playing with the other girls- what could be construed as shyness or helicopter parenting is just plain old sheer exhaustion. In that moment I feel horrible that I missed it- that I have put up my barriers to others struggles because I have been so focused on our own. Part of me wants to run away. Part of me knows the universe throws these landmines in our path for a reason. Sometimes you have to pull the scab off. So I pulled. In the few first moments I could not even get words out- I became that person- the person that came up to me time and time again after Lily was diagnosed with tears and I ended up comforting them. A dad standing nearby made a beeline for the barbecue.   Yet you are never as strong as you are when you are helping your child battle for their life and I know this now. I also pulled myself together and explained- choking up- I heard her daughter had leukemia- she nodded preparing herself to hear what everyone else says- they are so sorry- is there anything I can do- but instead I pointed to Lily. She's my survivor. She didn't have leukemia- but she had and exceptionally rare cancer with a very poor prognosis. This is the hardest time in your life- you will never be as exhausted or as strong as you are now and you will get through this. You will find strength in places your never expected and people will surprise the hell out of you. Ask for help. Sleep when you can and don't worry about the little things- when you get through this- they will be there and you can deal with it then. By the time I stopped talking - I realized we were gripping each others hands-me unsure of who was helping who more.  We talked for over an hour. We laughed about things that would mortify those who had not been through the journey. And so the scab bled- and still bleeds. But sometimes you are given an opportunity that reminds you of your purpose. I had been feeling very low about where I am at- where I am going. Even Phil finds relatablity on Sportscenter- Stewart Scott said "The worst part about cancer is that it robs you of the ability to make plans".  And we laughed. You can make plans- and just watch the show as they implode- sometimes it goes down like a tube of mentos in diet coke. Ahhh plans.

When you are living cancer- you have support coming out of the woodwork. You are on autopilot- "you don't have time to think up there- you think- you die". And you spend the recovery years trying to pick up the pieces- putting them together- but the moving forward is tricky.  You are terrified to make plans that will get annihilated by cancer yet you are surrounded by the urgency to get as much accomplished as humanly possible before time on the clock runs out. All the while the clock it taunting you- reminding you that you haven't accomplished things while daring you to make plans so you can face the ultimate disappointment. And so through it- you pretend to be normal and you get immersed in normal things and you pretend to forget about the parts of your life that have left the biggest scars. And under that scab was a great big scar- but spring is a time for new beginnings. And that scar was once an open wound and it healed- and now it's time to keep on keeping on and if we are lucky we will be able to look back on these times and have lots more scars to compare- because although those aren't the only remnants of the battle- they are the ones that bring us together and remind us what we are fighting for.

Lily Kay Monkey

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