Thursday, July 30, 2009

Let the Disinfecting begin.....

Right after I blogged yesterday, I looked over to find Bella curled up on the couch- an unusual flush to her otherwise pale pallor. Uh oh. I felt her leg, since her head was further away- and yep it was warm. Why is it instinct to feel a forehead? Is it becasue that's where our mom's felt? Is that because when you are all curled up that is the easily exposed part? The clinic calls and needs to see Lily, so I begin the babysitter search. I don't want to drag Bella into the hospital when she can rest. I take Lily into clinic and they cannot find a thing wrong with her. I, at this point, KNOW it was a bug because it obviously is contagious. But better safe than sorry.

Bella generally sleeps when she is sick. It was entirely too cute to hear Lily apologize over and over- I'm sorry I got you sick Bella. I'm sorry. Lily never threw up, but then again she hadn't had anything to eat for 24 hours when the virus hit her. Bella was tucked in and Phil and I went to bed early- both anticipating less than a full night's sleep. Bella was up by 1030, and then at midnight. Around 2 she just climbed in next to me and I had to remove the covers as she was steadily heating up and essentially panting- her little body's way of dealing with the bug. At 245 she sits straight up and demands to go downstairs- I would silently thank her later for this determination. I get her a cup of water and she immediately throws it up over herself. I don't think the water actually made it down to her stomach- but I throw her in the tub anyways- I need to get her fever down and she really won't be keeping tylenol down at this point.

The water cools her skin, she curls up on the couch and drifts off- only to wake every 20-30 minutes to dry heave for the next 4 hours. What's entertaining is how she feels the need to hop off the couch and do this bouncy little dance as she declares that she is gonna "trow up". I have to physically restrain her while she buries her head in the bucket and I can feel her little belly just heaving. "I don't wanna trow up momma." Obviously doing your little no trow up dance is not working so let's stay laying down. Some time after 6, the sun starts peeking through the window and I decide I must get some sleep. My head is throbbing and my stomach doesn't feel quite right- I nudge Phil as I crawl back into bed and he rolls out. I brief him on the need to restrain Bella when she declares she's gonna puke. I don't think he believed me. Oh well, he'll see. I'm just glad he goes in late to work today. When he comes back in, somehow what feels like 3 minutes is close to 3 hours. You were right, he tells me and proceeds to imitate Bella's puke dance perfectly. The puking has subsided, but she's demanding oatmeal. So far, she is still settling for water and keeping it down.

So much for the week of fun I had planned. The kids go back to school tomorrow. But don't you worry- they have next Friday off. Yep that's right, they go back to school on a Friday- and they have the following Friday off for a teacher work day. Must I comment further? It would make sense if they were given individualized school supply lists from teachers and then you would have a weekend to take care of it. I have to go check my inventory- but that's pretty much how it's going to be for us anywhoo.

The entire house has been lysolized and when we all end up with lung cancer- you will know why. Laundry is beeing processed and the rest of the cleaning will commence upon my completion here. Anyone wanna put money on when Phillip and Kiera will get it???

Wednesday, July 29, 2009

Wilted Lily

The scans went well, if you consider constant nausea, headache, grogginess and a trip to the ER in the middle of the night- well. We have learned that a certain anesthetic is Evil, with a capital E. Lily had a really difficult time waking up, which although not unusual- was particularly bad. There was much screaming and writhing and general malaise. By the time she and Phil got home around 5 pm(for a scan at 11......) she still was very groggy only to wake to complain of aches and pains.

I think by 7 she requested to go to her bed, continuing the same behavior. I've talked with friends who have had similar experiences with this drug and was warned the effects could last up to 8 hours. She felt warm to me, so I took her temperature- it was 99.7 under her arm. Ugh that means 100.7. Technically a fever. Phil and I agreed to wait and see. I put cool cloths on her, gave her a double dose of hydrocortisone and laid down for a midsummer's nap as she drifted off- it was about 3 winks until lil Phillip was shaking me. Mom- I heard Lily cry. I got up- by the time I got to her room she was asleep again- but one touch to her head and I knew we were in trouble. I rinsed the cloths and laid them over her whole body- which woke her up- which was fine, I needed an oral temp. 104. Mother beetch. Time to go. I page the on call doc. Phil comes in- what is it? 104. Yep she needs to go to the ER.

By the time the bag is packed I hear the beeping of the thermometer again- it's down to 102.5. Still very, very bad. We never got a call back, Phil pages the doc again. Still no call. Off we go. The ER was efficient and ran cultures and blood counts and took samples- no cause to be found. They give her some fluids and more tylenol and hydrocortisone. The fever breaks. Her sodium is a little low- but that's it. Unexplained febrile condition. great. It wasn't an adrenal crisis, which I feared. The ER doc said if it was crisis, she would have been throwing up, a lot. At 02:30, she was back home and drifting off on the couch- at least coherent in between naps. We are to give her triple doses of hydrocortisone- I'll probably throw some salt in there too. Poor monkey.

The scan results should be available in 48-72 hours- at least the official report from the radiologist. The ER wanted us to follow up with Peds, but we will prob follow up in oncology since they know her better.

Tuesday, July 28, 2009

I'm the map, I'm the Map....

Phil made it home! Bella spent the drive to base chanting " I wanna cwismas twee". I finally looked at her and said "what?" and then she mimed opening a present- aaaaah you want a present! "Yep daddy brings me pwesents!"

And that he did- each girl got a faux diamond ring from Singapore, which goes really well with the fauxhawk Lily is sporting these days. There were tshirts, and maps which ultimately stole the show. Very much like the phenomenon of kids playing with wrapping paper and boxes that toys come in, they played with the maps all afternoon. Lily slept with hers. There was some drama when it sustained usage damage- but all in all- scotch tape mends everything but the emotional wound it left.

As I got ready for bed the stress started building. Scans. Lily has her CT and MRI today. The hormone tests all came back normal- and if there were tumors causing her "symptoms" they would expect the hormone levels to be raised. Phil and I had the cursory debate over who would take Lily in. He asked me if I wanted to go. No. No I don't want to go. I need to go, I should be there- but do I WANT to be there, no. I want to be there for Lily. It's a complicated mix of feelings- but scans are exhausting. It's emotionally draining- battling her fears, while suppressing yours running around, getting the paperwork in order and then waiting for the scans. I usually take a book and reread the same paragraph 800 times until the tech or resident comes out and walk to recovery with her- and then the real fun begins. The screaming, the crying the I wanna go home-ing. Phil suggests we let Lily decide in the morning. That's fair.

She gets up at 0530 and drags me downstairs. She's thirsty and hungry. The other downside to scans- NPO status. Fortunately since it isn't major surgery she's going into and just a scan- I adjust the stringency of adhesion to rules accordingly. I fix her some toast and water and she ends up consuming neither. Another lesson learned previously. I could spend an hour telling her every three seconds that she can't eat or drink- or put a small something out and she doesn't eat it anyhow- it's availability appeases her. She can have clears until 8. But I would like her to have something little in her tummy before I give her a triple dose of hydrocortisone for the stress.

She runs the gamut of questions- are they taking my button out? No. Are they going to poke this?(she points to her port) Yes. Oh. Am I gonna sleep there? Kind of- you will take a little nap and then come home. No- I don't like that, she's starting to panic. Ok babe- it's ok, you'll wake up happy and we'll get you whatever you want for lunch. OK.

Phil comes downstairs and immediately asks who she wants to take her- you. She looks at me- I want daddy to take me-can two of you take me? Well, someone has to stay with Phillip, Kiera and Bella. Ok, you stay here with them, daddy will take me to the sospital. And I am relieved. It's like a last minute pardon. It's so much easier to clean and do laundry while stressed than to sit in a waiting area with dozens of other stressed people- the air of stress is tangible. We don't get the results right away anyhow. We still have to wait for that. I usually have to call and ask. When they call you, it's rarely a good sign. She grabs her map, packs her backpack and she is ready to go. Where are we going? She points to a spot on the map. Apparently the hospital is in Singapore now.....

Saturday, July 25, 2009

Oncology on Canvas

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We got to participate in a wonderful workshop this morning called Oncology on Canvas. All of the oncology patients in the hospital and their families are invited to come and express their journey through art. As we walked in, a few of the volunteers introduced themselves to the kids and immediately supplied them with plates full of sugar. As they were carb-overloading, I was secretly hoping the sugar crash would coincide with the rest of my afternoon. The kids were provided with any type of paints, colors, markers that they could imagine. I was encouraged to join in the fun.

I had taken the kids , thinking this was a great outing for them while Phil was gone and it included minimal clean up for me. I think what I took away from the experience was far more valuable than anything. I watched families in various stages of cancer all trying to find answers, closure, expressions on paper to what they have been through. Each was different. Some were empowered, positive- others were beat down- all represented through art. There were islands, and mountains, dark caves and beautiful moons- there were flowers and turtles and knifes and ribbons. It was so interesting to see. Talent was not the point- healing was. Far more meaningful that million dollar paintings and way more valuable was this experience. It showed me another glimpse into my kid's thoughts- Lily clearly misses daddy as every paint stroke was yet another item for him. At 4, she lives in the moment- and this moment she is not a cancer survivor- she just misses daddy. Kiera was very intent on her art- yet all she really wanted to do was take it home. For Kiera, it is all about showing her friends. Bella did everything that Lily and Kiera did, with her own quirky twist. And Phillip got lost in trying to perfect Phineas and Ferb- wanting to quit when it wasn't perfect. I finally convinced him that it was his drawing, and as usual he was his strictest critic. Don't know where he gets that from. As for me- it started as an idea of the frog in Lily's belly. I could handle that- maybe sitting on a lilypad- with a purple Lily. I drew the outline of a body,of what was initially thought to be Lily- and inside the chest was the Lilypad with the frog. Yet the frog was more inside the Lilypad- I never was any good with depth and position, ugh- but then it took shape in my mind- the Lily pad was shaped like a heart- the frog in the belly of the Lily- the person holding the Lilypad was me. And there my friends is art therapy. What it starts out as is rarely what it turns into and what it turns into tells you way more about what you start out with than you originally thought. Hmm.

Thursday, July 23, 2009

Right there.

Thanks to all who have been so supportive. You can't pick your family, but you do pick your friends and sometimes you luck out on both counts. I have the most amazing friends- and gosh darn it I love you guys! As for my family- you're pretty awesome too.

Phil is trolloping about Singapore these days- sorry honey- I meant to say working dilligently to further friendly international relationships ;) We have been doing video chat, which the girls find this to be a great way to be silly. We take this opportunity to do a geography(aka situational awareness) lesson- which Lily seems less than interested in. Phil: Lily- do you know where I am? Lily: Daddy watch this....(insert goofy face) Phil: Lily I am in Singapore. Can you say singapore? Lily- Daddy watch this(insert goofy dance). Phil; Lily, where am I? Lily: You are right there, watch this.....

Monday, July 20, 2009

Our Wish.

Lily's wish to go to Disney World has been granted. We will be going in September. Phil and I are overwhelmed by the generosity of this gift. It has been a constant throughout this process, an incentive when the going got tough- a reward for getting through when the going got tough- and a beacon of light for our little family that every day was forced to get tougher. I never thought there would be a down side to it.

I have been also humbled by the support and interest so many have shown in being a part of this wish trip. So many who just want the chance to give us the hugs, distance has not allowed over the past year. I truly do not wish to hurt the feelings of those who selflessly offer their support and love, but others are not so selfless. I can't tell you how much consideration and thought we have given this. I have gotten earfuls from different sources. Which led me to my decision. A decision a good friend of mine offered up 2 days after I told her of the wish trip many months ago. We have depleted our emotional resources during the past year. We have tried to grasp moments of fun and rest whenever possible- but I have no idea how long it will take us to recharge. All I know is that we need a vacation. We need to get away from our immediate responsibilities and obligations and regroup, reconnect, and refuel. As much as I would love to have a reunion with our many supporters- this vacation is not the time or the place. I don't want to plan it, nor would I like anyone else to plan it for us- we just want to be us and go with the flow. The more fish swimming around us- the less likely we will be able to go in the direction we want. The six of us have all sacrificed a lot of ourselves throughout this process. Phil and I have had to let certain aspects of our relationship and our relationships with our kids to slide or be pushed aside, merely to survive daily life of dealing with cancer. We have a lot of catching up to do with each other and with them. We will at another time welcome, cherish and help coordinate visits from friends and family. But for this trip, we are kindly requesting to be allowed the time and space to put the pieces back together during this trip.

Friday, July 17, 2009

Pieces of me.

I have had the luxury of going for walks 3 mornings in a row. The first morning was exhilarating. The breeze along the beach at Koolina- fresh with the hint of plumeria in bloom. The view breathtaking as the waves crashed along the lagoon rocks. I remembered why I loved walking, it gave me time with my thoughts- to gather them, to rearrange them- create them. This is where I find clarity and happiness- I make sense of what is confusing, peace from what is infuriating.

The second morning, I walk along the familiar streets of our neighborhood. The weight in my chest, crushing my heart. I don't know why it seems so intense now- it should be getting better. I should be working through this. I am less than a half a mile from home, and my eyes are leaking. I am not crying, I am leaking. Crying is an active reponse to a stimulus- this- this is a flipping fountain. What is wrong with me? I am not sobbing- but I feel like I can't breathe- it's not the pace of my walk- it's the pieces inside my heart shuffling around to make sense and heal. It doens't matter how deeply I breathe, I can't catch my breath- but I keep walking- looking for the peace that seems to elude me. I start sorting the threads of thoughts- looking for the answer. This feeling is all too familiar. It's somewhere in the middle of what I could compare to the runner's wall. It's my emotional wall- something I am all too familiar with. The wall that flings itself up around the loss. Protecting it until I have the time to deal with it. The tears are the response to this stimulus- the collection of fear, hurt and anger of the past year. My body is letting go, despite my resolve to keep it together. This is sheer silliness. This is a good waste of alone time. Pouring about like something is wrong. I finally make my round and march through the door, right up the stairs and into my room. I take a few minutes- a few splashes of water and I am presentable. Phil knows immediately something is wrong. Damn, thought I was presentable and the faucet is on again, oh blast it to hell. And just like that I am surrounded by 3 of my favorite people in the world- in one heckuva Mallory sandwich. Phil is my rock- holding me up, if only he was the typical male oblivious to any internal struggle of mine- I might be able to hold it together- as usual-Lily wants in on the action - never one to be left out of a group hug and lil Phillip with obvious concern. Phil explains that we've had a rough year and sometimes a good cry helps to release the stress. Oh if only that were the case- you'd see me sobbing everywhere- but I have yet to find that it does anything but make my eyes sore and seriously reduces the life of my contacts.

Phil hesitantly leaves for work, throwing cautious glances at me when he thinks I don't notice. I try cleaning- but I don't feel like it- so I immerse myself in a book. I know at some point I will have to come up with a good reason why I sprung a leak- but I honestly don't have one. I wasn't thinking about anything. I haven't had much alone time to think- the few afternoons I've had to myself- I have kept so busy that I didn't have time to think. Perhaps it's the cumulative effect of all the times the past year I have tucked away feelings because there wasn't time to deal and now they have started to come out of hiding. I wish I could feel like it was over. Phil feels it too. Fortunately it brings us together rather than drive us apart. After all these years- he amazes me by accepting my wackiness- and part of me thinks he actually LIKES it. It also makes my wacky feelings feel less crazy when I realize he feels the same way- it makes them real- less imagined. It makes me wonder how anyone would be willing to settle for less than their soulmate . I wonder if it is because people value different things. I can't imagine not having someone by my side who didn't understand completely- I am so lucky in that way.

Day 3, I am handed his Ipod set to a playlist with upbeat music- and the instructions to not think. Perhaps that is best for now. I make it through the walk with out a single tear. Really the thinking isn't the problem as much as the feeling. The feeling that something is wrong, the waiting for the confirmation. Realism says go about your business, no sense in worrying- but intuition is just that- not so much controllable. I could pretend we are normal- but right now that takes too much effort. I know eventually it will be so second nature that we may actually feel normal again- but for now it just feels like work. I don't feel like cleaning. I don't feel like doing anything. I feel like I should be doing something, I have no excuse now. Other than the constant mood swings and the emotional wreckage- I have no excuse. Yet I am tired. To my core. Tired of explaining that yes chemo is over, but no we don't use the word cured at this stage- we have to get through a year's worth of scans first. Some don't say cured for 5 years. But we are still left with the remnants of the storm. I am grateful for my sisters in battle who confirm the phenomenon- that we are not alone in our feelings- they feel it too. The exhaustion, the guarded hope, the constant worry. And every night, I do my rounds. I stop and pause to watch them all peacefully sleeping. I wonder at how they have changed my life in such a short amount of time- how I can't imagine ever loving anyone more than I do them. I miss the innocence, the easier times and try to keep the illusion of childhood alive for them. I know it will get easier. I am eternally hopeful. In their own ways- each one of them has given me gifts I would never physically hold and therefore would not and could not ever lose. They are my life.

I have written many entries, never published. Some things are just too personal. It is what it is. I am not fishing for a barrage of concerned emails and calls- I am safe within my walls. I am letting you know that when you see the scars of cancer, there are much deeper emotional scars that take longer to heal. I don't want to dwell, but I can't pretend it's not there. We are forever changed, and not always in the best way.

Thursday, July 9, 2009

Tripler Post Chemo Marathon

Lily and I have begun our post chemo marathon testing training. Let's see it's Thursday and we've spent 3 of 4 days at the pink palace. Aaaah, it's like old times. insert me rolling eyes. *Fortunately* this is my new sarcastic designation- think on it, reflect on it- it's very reminiscent of the good old finger quotations...which also were usually sarcastic. Ok, I digress. *Fortunately* Phil is night flying this week, so he has been available morningish- to early afternoonish - ish for help with Bella. We had Lily's endrocrinology appointment which led to a battery of other tests. Her "bud" development has continued, as has her furriness. Her hips are also widening. Our oncologist *reassures* us that any course that had started before chemo, will resume- so it is not unexpected for her to continue furryfying. And somehow here's me...not feeling reassured in the least.

So we(endocrinologist and I) conference with the oncologist, who is now back from somewhere far far away. Mid conference we begin a sidebar about mitotane since this is our first meeting in weeks. The endocrinologist is off trying to coordinate tests and such. Oncologist- so, um , by my calculations we should have been done with mitotane on the 29th. Maybe the hugging her and telling her I loved her was a bit over the top- and slightly caught her off guard- but I KNEW I wasn't crazy. I feel like it most of the time. When you go in 12 directions at once- you can't possibly be committed to one direction- but I was definitely in lust with the direction we just passed. Yea me. So we are officially officially done with the mitotane phase of this journey. Yea Lily!

We are scheduling her post treatment scans which will include MRI, CT and an Ultrasound of her belly. These will be repeated every 3 months for the next year. Today we had to do a blood test to determine something. That's all I know so you'll just have to go with it- that's what I do. Our endocrinologist is very good in a lot of ways, and she has a unique personality. It was during the last visit that it occurred to me that the storage closet with the ancient measuring devices in it that she trusted implicitly for consistent measurements- was in fact, her office. As Phil put it, she could pull 12 pencils from her hair and he wouldn't be surprised in the least - and I feel that is an accurate statement. Piles of books and papers and files everywhere. She doesn't trust the scheduling computer system and schedules everything herself- and I actually like this. She always has to be paged for our appointments- but it works. If you know me, I like to know what scan, test what ever we are doing, why, what it tells us, how often it needs to be done, etc. You have to be on top of things with this whole multidisciplinary treatment thing. But the words used to describe the test and it's purpose could not find residence in my brain- and really I should have asked today as we were doing the test- but quite frankly I was tired and hungry because Lily had to fast and I felt it would be rude to eat and there wasn't really time to eat without her seeing - so it didn't happen.

The test required accessing her port- drawing a fasting blood level- as well as 4 other vials for various other tests- followed by a shot in her leg(yeah THAT went well) and another blood draw(out of her port) 40 min later. I was just relieved it was 40 minutes to wait as opposed to the 3 HOURS I was previously told. This test apparently will tell us something about her hormone levels and yeah, well something I will eventually figure out. Right now her hormone levels are too low to indicate her being in puberty, so we have to rule out other causes(aka tumors) causing these changes. A lot of it is our new "routine" testing, some of it is being extra careful.

Lily Kay Monkey

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