Sunday, August 20, 2017


Lily started Middle School. She's been so excited to be at her own school. She doesn't even mind that some of her teachers remember her siblings. A tough teacher that Phillip and Kiera both struggled with, will probably end up being Lily's favorite teacher ever. They all have such different personalities and learning styles.

The first week back to school was pretty crazy. Of course I had chemo on Monday- so really sent Lily  off to her first day of 7th grade with a lot of faith. She rode her skateboard with a friend. I hadn't prepared my usual pack of information that I deliver to the health room. I felt horrible about it- a new school- they'll never have heard of adrenal insufficiency. The public health nurse took care of Phillip and worked with me over the summer to get some of the items taken care of. In the past - it was usually January before anything was set so part of me decided- what's the rush? Plus I can't even take in the meds until the proper paperwork was filed and rarely was this ever done in the first week of school. For either child.

When I called the health room, the bubbly aide seemed surprised she hadn't met me yet or had Lily's meds- she had already treated several kids that morning. Of course Lily's counselor and the skilled nurse would be in contact with me. I let her know Lily had an audiology appointment on Wednesday and I'd pick her up early and bring the meds then. She said she would make sure the counselor and skilled nurse knew. That was - a bit easy. Ok.

I got the packet of information together- it includes Lily's AI information, all the doctors and emergency numbers- when she needs meds, background on adrenal insufficiency and instructions on how to give the injection. Each year I usually just have to update her picture- this year I had to update- med amounts, and all of her docs and emergency numbers.

I went into the health room, I felt very comfortable she knew who both Lily and I were( check 1) - we chatted, she then took me to meet Lily's counselor who had done his research. Lily mentioned he introduced himself on Monday and showed her his office and they talked about her health and how she handles things. I'm sure he knows more than he expected about a lot of things! This put my mind at ease(check 2)  - Lily is fairly independent with her health- but due to the nature of emergency shots- that is something she just has to have back up on.

So far I'm impressed with her counselor and his interest in Lily's care. Of all the things we have on our plate- it's nice to have another person on the team. He also totally understands we want her to be treated "normally" in all other respects. I warned him that she will visit him or the health aide on chemo weeks- he understood. She really does take personal responsibility for me- it is so sweet and makes me so sad at the same time. All the kids are to get themselves ready for school, pack lunches, etc. on their own. If I'm not awake(some nights are better than others) she will come in and hug me. She's also started leaving notes on the kitchen counter like Phil used to do. I love it so much I can't even describe the feeling.

The week was busy- there were many papers to sign, things to get in order. One day I had the foresight to throw kalua pig in the crock pot. We were home lateish and I was shredding the pig. As I normally do, I tested a piece. The piece lodged itself in my throat. Not the route to the stomach throat. Of course trying to take a deep breath made it worse. I tried pushing myself over the counter chairs- they are too high- I look around while trying to self heimlich. Lily sees me stuggling and runs over- all I hear is what do I DO? What do I DO? I point upstairs- Phil is in the shower- other than that we are alone. I run over to the sink and hurl myself at the edge- evicting the anti breathing wad of slightly dry pork.

I'm shaking pretty bad- not thinking the knees will hold. I sit down, Lily wraps her arms around me. God I hate this. She's crying- I'm so sorry I didn't know what to do. I laugh- she's apologizing- sweetie- you did great.  We talk about choking and how to do the heimlich. Girlfriend can apply first aid to broken bones, sprains, knows the ups and downs of blood sugars and how to inject glucagon or hydrocortisone- I guess we've never covered choking. Kiera used to choke all the time- did the baby heimlich on that one more times than I'd like to remember- and on all of them at some point. But it hasn't been a problem lately. I leave dinner sitting and go sit out back.

Phil comes out- Lily said you were choking. Yeah. Ok? Yeah. You want dinner? Everything is screaming nooooooo- my throat burns, my head throbs- but with the stress- I should probably take hydrocortisone to help my body deal and I have to take it with food. So I eat carefully and laugh- I tell the kids all the time- we've worked so hard to keep you alive- I would hate for you to go down doing something stupid. I tell Phil and Lily- I would hate to have gone through all this to stay alive and then die by choking on kalua pig. We laugh- when the others get home, we go over the Heimlich with all of them. Lily sits closer to me now, she holds my hand more. Like we need one more reminder of how quickly everything can change. Yet somehow we do. We hug more. We love more. We argue and work things out, more. When the monkey has one day notice to play basketball- you say yes, more.

Saturday, August 19, 2017

End of Summer Clean up

The follow ups this year are a shadow in Bella's arm and a lump that appeared on Phillip's ribcage. Hoping for nothing, but we don't know until we know. I think of the swollen lymphnodes a few months back- were they trying to fight this lump off? who knows.

Phillip was of course referred out to a dermatology consult. Which was fine with me, I've been to Tripler derm a few times and the scars to prove it. Lily was referred out years ago and I was impressed.

With LFS there is a lot of self advocating. I'm trying to give the kids the tools they need to navigate the crazy healthcare world with a rare condition.  I tell them to pay attention to biology, anatomy, in school and in person. Know their bodies. If anything weird pops up and lingers( we have a 2 week rule) we get it checked out.

Phillip is on the cusp of adulthood-he's no stranger to medical stuff as he's been independently managing his diabetes for awhile. I appreciate that he tells me about concerns. It's a hard concept to understand- taking care of things early could mean the difference of life and death for us. I prepare him for my gut reaction- to remove it. He has some time to think on it. I will let it be his call.

The nurse calls us into the room, she recognizes Phillip. I ask if she shops at Safeway, we discuss their Friday deals and great flowers. I share with her a bit of our family history and Li Fraumeni syndrome and why we are here for this little lump.  She looks at it, visibly taken back by our history.

When she leaves I explain to Phillip why I go over LFS and our history. We are lucky to have a team at Tripler that knows us and our history and automatically takes into account our mutated p53. little things that don't concern normal people- could be bad for us. They could be nothing too. I tell him most of our time is advocating for ourselves. Most doctors have never heard of LFS and it's on us to make sure they understand. I show him the living LFS pamphlet I brought as well as the latest journal article on LFS and screening that I printed out. I'll leave both with the doctor.

As we sit- Phillip paces- the view overlooks Aiea and we can see the Arizona Memorial. He asks a few questions, I answer. The doctor finally comes in. Phillip takes off his shirt, the doc draws around the lump. Its about a 1 cm oval, palpable, not fixed. He's not concerned and says considering history, lets remove it. I agree.

He asks me several questions about Li Fralini - it takes about 5 tries before we got the name down_ I tell him we call it LFS for short. He asks me if I'm a nurse. Nope. not officially. He asks me specific questions with medical terms- he's feeling me out and my knowledge- I take the bait and answer equally as medically. He is not familiar with sarcomas, I ask him to consider wider margins than he was planning so we don't have to go back- I hold up my shark bite. I explain about Lily's sarcoma and 15 year old LFS friend was just diagnosed with an extraosseous osteosarcoma- our lumps tend toward weird.  I pray it's nothing- I've had several of those too, we just have to be careful. And oh would he mind doing a once over look at his other skin to make sure everything is ok.

He smiles, almost condescending, but he has kind eyes so I let it go. He says he realizes I've been traumatized but not everything is cancer. I would rather have a non cancer removed then for it to become something that cannot be treated. I explain again that both my brother and father died of brain tumors, phillip's sister had adrenal cancer in addition to sarcoma( which was just a nothing...) He interrupts- medullary tumor? No- It was adrenocortical carcinoma. That got his attention. In addition to her plexiform fibrohistiocytic tumor, mine was also fibrohistiocytic but I think they are calling them pleomorphic something or other's now- I can't keep track. That was the same time as my breast cancer which metastasized to my lungs, bones and brain- so yes there has been LOTS of trauma and lots of cancer flags.

He pulls up Phillip's shirt and makes a wider margin around the existing one. He turns to me- you should really consider starting a patient advocacy group. I pick up the living LFS pamphlet and say - I have. This is our group.

Living LFS? What does that stand for?

Oh holy fuck- again with the Li Fraumeni Syndrome pronunciation guide. I tell him a bit about some of the cancers and rarities our families face, but it is the most phenomenal group of people. He asks to keep the literature- of course- please.

We schedule the surgery- it'll be minor, but we have to work around his college schedule now. And so now we wait.

Sunday, July 30, 2017

Mid-Cancer Crisis. Staying the LFS Course.

I feel like EVERYONE I know is battling cancer. Various stages and various levels of support- like any challenge in life.

As a family we are stuck in Mid-Cancer Crisis. This is living LFS. Li-Fraumeni Syndrome- the hereditary cancer syndrome from hell. How do you feel? Like Fucking Shit. Fine. I'm fine.

We are mid scans. Bella's was Friday. Phillip was Saturday. Kiera and Lily are status quo. phew. which is not to say clear- but this is how we live- we triage. Like Fucking Superstars. One day at a time. No news is good news.

I am mid cycle. I had a fever this round- shhh don't tell- I didn't go in. I didn't call. I took extra hydrocortisone and tried to sleep. everything hurt. Things were runny. Normally I'd call my friend D'Ana who would never call a nurse for a 100.5 fever but would absolutely tell me to. Little Fevers Suck. They too pass.

I am mid way to losing all my shit with the kids. They are kids. One more week of summer. Phillip and Bella got to spend almost a month with Grandma Sandy and Ed. Kiera and Lily enjoyed the independence when Phil and I went to Alaska.  Lotsa Fun Summer. Reminders of summers past.

I feel invisible. I feel exhausted. I feel like I'm drowning in the trying to, needing to do better. I feel like I have to find the energy to put the smile on and fake it til we make it. Let's Fake Smile.  We are making it.

Somehow we are back to whatever normal we are. I know it could be worse. I so want it to be better. Looking Forward Some. Even if just a day at a time.

I can't live like I'm dying.  The toll on Phil. The toll on the kids. I can't live like this is normal. the toll on me. Let's Find Strength.

I am am midway through rearranging furniture. I focus on cooking, even though nothing sounds good.  Small changes. Things I can control. Things that are important.


Tuesday, June 6, 2017

D'Ana, my first Chemosabe.

I first met D online, her sister brought her into the LFS support group. Courtney always said D'Ana needed us, but I know now we all needed her in so many ways.

We called her Gabby. She would chat and chat and chat. She always had time for a friend, to make a new friend, to sing or create an adventure. We all have friends who are the ones to check in on us- D would check in on me by Facetime. Honestly it was a much better experience- D'Ana really had to be seen to be believed. She was one of a kind. She would carpool with me and the girls to school- my phone precariously perched on the dash. She never minded running errands with you via Facetime- and D taught my kids to armpit fart with straws. One time when she wasn't feeling well- Bella upped the game by using a balloon pump behind her knee to make fart noises. We videoed it and sent it to her, just to make her smile. As an experienced mom while cancering- she often talked me off the ledge of kid/teen madness.

When we met, D was facing mets and first told me about "neverending chemo". It is one thing that stings when you are forever cancering- you know besides the imminent threat of death, dismemberment and losing one's faculties- the question is asked- when will you be done with chemo? D'Ana used to answer- the fifth of never.  When I was diagnosed with mets- she patiently answered all my newbie questions. She and Court even made me a welcome to the forever chemo club gift basket. It had all the creature comforts for my upcoming chemobay adventures. D told me all about the port-"numbing spray is for pussies" was actually what she said. Every single time I get asked if I need numbing spray- I hear her voice in my head.

For awhile we were on the same chemo schedule. We would message back and forth. She would tell me about all her chemosabes, of which I was now one. She was my first. We discussed pros and cons of treatments and she advised me on how to live despite the cancer cloud hanging over my head and kept me laughing.  I don't like to talk in the chemobay- but D'Ana lit up any room she landed in even if it was only via messenger or Facetime. Her sense of humor, authenticity and sharp wit usually left everyone in stitches, even outside the ER. She said it was just ADD. She made friends everywhere and although her health issues were complicated, she was everyone's favorite patient.

When my hair started falling out, she made sure I signed up for the Look Good Feel Better program from American Cancer Society- for the "excellent swag". Although, it didn't hurt when the hair falls out- some of the follicles were inflamed- she sent me the comfiest fuzzy blue cap to sleep in, hers was pink but she knew I had an aversion to pink.

She was one of the smartest women I've met- even though she said she was only the master of random factoids.   If she didn't know an answer, she'd look it up. We many times discussed what a useless bitch Siri is. Like the time I was considering the chemo  Pertuzumab and Siri heard her say she "Purchased a map." We planned to align our schedules, get her here to Hawaii where we could celebrate Herceptin Humpday together.

D'Ana was an unconditional friend, laughing through tears she carefully controlled. If she had a friend in need, she'd pack up and drive there in a hot flash. She was fiercely independent, yet thrived off of human connection. She surrounded herself with a conglomerate of amazing people. When a bunch of mutants met up in Boston- she threw together a spreadsheet of information to help wrangle us. Out of this friendship, grew Living LFS-our nonprofit to help others like us. We wanted to share the friendship, understanding and laughter we found- despite this shitty mutant syndrome. When we wanted to find a way to bring more mutants together- we decided to do a T-shirt fundraiser- D rattled off at least 5 ideas- all brilliant- we settled on her first idea "Have you Hugged a Mutant Today?" Our first and best selling t shirt to date!

 I am impossibly sad and very angry that D'Ana is no longer here. The world truly got dimmer. We've come a long way and many cancers are "manageable". But the loss of good friends will never be "manageable" or acceptable. I will be forever grateful to Courtney for sharing her sister with me.  I could go on.  One of the very tough things about having wonderful friends who "get it" is the impending impermanence we all have. No one can say for sure how long any of us has. 2 things I know for sure- D'Ana did not get nearly as much time here as she should have and because I knew her I was changed for good.

Tuesday, May 23, 2017

I'm so PROUD!

Phillip graduated MAGNA CUM LAUDE from James Campbell High School on Sunday.

Not only did he take tough, AP courses, he wrestled for 3 years and then worked. I could go on and on about the things he has accomplished so far. On his own. 

His entire high school career, I've been cancering. We've expected more from him at times than a kid his age should have had to deal with. He is independent. He's excelled in so many areas, despite the many medical challenges he has faced and we have faced as a family. 

I am most proud of the young man he has become. We laid a foundation, but his accomplishments are his. I could not be more proud of him. 

He is an amazing big brother and fiercely protective of the girls. To see them beam with pride at graduation was such a blessing. 

He is an immensely talented musician. I could listen to him play the piano all day. He will play a song then drift off into his own compositions. Beautiful pieces. 

He is a gifted writer. I love his sense of humor and the way he expresses himself. He may have inherited a boatload of snark from his parents. 

He is dedicated and loyal and challenges himself physically. He wrestled for 3 years, but also helps friends with workout plans and healthy choices. He manages his diabetes despite everything else. This means extra, always. appointments, attention, planning. And he does it. 

Mostly, every time I run into a friend or acquaintance, they tell me how polite and helpful he is. He is a good human. THAT is what I am most proud of. He has had some shit things happen to and around him, he could choose to be bitter or let it limit him- but he doesn't, he finds his way around it. 
with his pack o supplies. 

The next challenge is college. I have been no help these past 6 months with college applications and planning. Fortunately Phil has been helping with that. Phillip applied to a few schools just in time for deadlines- which all seemed to fall right around my surgery time. Phillip was accepted to 3 local colleges as well as the University of Colorado and waitlisted at The Ohio State University. He is planning on going to the University of Hawaii- Manoa in the fall and is interested in studying Physics.
circa 2008

I am so proud of the person he is and the difference he makes in the lives around him. 
I am lucky to be his mom.  
Proud parents with the graduate!!

Wednesday, May 10, 2017

Life in the fast lane.

This time of year- can I say it enough- Holy Busy Batman!

This past weekend we had Kiera and Lily's dance recital Saturday afternoon and St. Baldrick's Sunday. of course it was drill weekend- which meant Phil was working.

Plans have to be malleable. I was really looking forward to watching the girls dance. They love it and have fun and it shows. That is what makes it fun to watch. The recital was on the other side of the island. Kiera was caravanning with her ballet mistress- since they had to be there really early. I tried to get up to wish them well- but I just didn't have the energy. I just missed them but as soon as I got downstairs, there was a soft knock on the door. Phillip's girlfriend was here to make them breakfast. I knew they had a breakfast date- I just didn't know it was here. So I grabbed Bella and we went and got McDonald's and came back. Just that activity and I was ready for a rest.

I laid down and my phone rings. It was the ballet mistress. Kiera was in a bit of a fender bender- it was ok no damage, no injuries, and it was with her. everything was fine. They are just cars.

I rested a bit then showered and gathered Bella. Phillip was getting ready for work and Boo and I had to stop by the store to get leis for the girls. While at store, Boo decides she needs a pair of handcuffs- $2- battles- I'm, picking them- this isn't one.

We head to the highway and are moving along, the exit is coming up, traffic comes to an abrupt stop. I slam on the breaks- look in the rear view to check Bella and see the motorcycle behind me trying to stop. He fishtails, the bike is going down, he bails and slides off towards the shoulder, the bike bangs into the back of my van. I pull over to the shoulder- tell Bella to stay put and get out of the car. The motorcyclist is down and a couple cars have pulled over and are either helping him or directing traffic. I call 911 while holding an umbrella over the motorcyclist.

The motorcyclist is talking but in a lot of pain. His right ankle got caught under the bike when he bailed. 2 guys were helping him. Another family pulls over and calls 911 too. The ambulance arrives, they take him inside. He's got some road rash and maybe broken bones, but he's going to be ok- everyone else leaves. I chat with the firefighter.  I know I have to stay- but the HPD has not arrived yet. I was about to call 911 again when the officer pulls up. The firefighter fills him in and mentions I am trying to get to my daughter's recital. The officer says we will be as quick as possible. He checks on the motorcyclist and then hands me a clipboard for my statement. He asks for my license and registration- he says I can fill the form out in the car.  As I get to the car- I look in the window- Bella has handcuffed herself to the handle. Oh dear God.

Sweet child please uncuff yourself before the officer sees. I look at the time- The recital is starting now. Tears. Bella asks if the the guy is ok and says the motorcycle made a loud thump when it hit the car. I tell her he's hurt but he's going to be ok. I fill out the form and take it back to the officer. He asks if I'm ok, if my passenger is ok, the car has a scratch. I tell him- I'm fine, Bella is fine, really I want to make sure the motorcyclist is OK and get to my daughters' recital safely. That is all- the car is just a car.  He hands me the incident report number and sends me on my way.

In the car I take an extra hydrocortisone and debate maybe taking 2. Just to cover the stress. But mostly I want to get to the recital. We get there- score the last parking spot, dash(I cant say run, I could say lop fastly) into the hall. No one is around- up 3 flights of stairs. I just need to sit. I missed Kiera's first number- but have seen it before. I glance at a program- I didn't miss Lily's. The tears just keep falling. I can't stop them. Exhaustion, relief, the gamut. And somehow I still made it to see the girls dance. And it was beautiful and totally worth it.

Monday, April 24, 2017

I have NEADs.

Quick Update:

Stable, NEAD
Adrenal insufficiency

I have been tired. Exhausted. Fatigued. In a way I have not been familiar with. I go upstairs. I need to rest. I shower. I need to rest. I wake up, I need to rest.

I sit down in the chemo bay and Jacqui looks at me- You are stable-I expected you to be dancing around and happy. - I am too tired. crazy tired. my feets are swollen and my blood sugar is high.

My ankles and feet were a bit swollen when I left the hospital- 2.5 months ago. I was sure it would resolve once I was off steroids. I have been off steroids for 2 weeks. It is not better. It hurts. If I sit - they poof- If i Stand- they Poof. The kids call them WALL-E feet.  Like the movie. I was not amused. We tried rubbing, wrapping, compressing. They bruise when I put my shoes on. - it hurts and I've been watching my blood sugar- it too was supposed to get better after steroids. It has not.

Today was my last appointment with my onc. He is retiring. So It was time for me to pull out the laundry list of concerns that I've waved off as fine for the past couple months.

One look at my feet, he shook his head and ordered a stim test. I know the stim test for adrenal insufficiency because we do them with Lily- it's how we know whether her adrenals are working.

After prolonged time on steroids- the adrenals sometimes go on strike. the stim test is a blood test- they draw blood- inject ACTH to stimulate the adrenals then draw more blood at half an hour and an hour. If the adrenals work- you see a response. If not- you have to supplement with hydrocortisone. We know the drill.

Scan results- Good, good and good. Not NED. NED is No Evidence of disease. BUT we got NEAD- His slightly higher maintenance brother. No Evidence of Active Disease. They noted new post surgical changes in my nugget(but everything else up yonder in my brain is unremarkable). PET scan is not good for brain monitoring. but still we take it and I'll argue later about how remarkable my brain truly is.

The nodules in my lungs are STABLE. this is good. Heart, etc are normal- which I could disagree but for this case normal is good. No swollen lymphnodes-good.

Liver, kidneys, organs- all those bits- good. adrenals- good- this is important for the next problem.  No masses or fluid build up. I have a big spleen. splenomegaly. go ahead say it. I can't.

Bones- STABLE. They still can see the bits that are metastases- but they are not active- we hope to keep them as sleepy as possible. The immunotherapy shot I get every 6 weeks helps keep my bones strong.

Number 1 impression: No evidence of active disease. NEAD. Just what I needed to hear.

So we chat with my onc about metformin(it's a type 2 diabetes drug that is also showing to have some good results in cancer patients) Many mutants were in a study to see if it is cancer preventative(because we are super cancer prone) the prelim was good. It's worth a try. So we are trying it. It will hopefully also help with the pesky blood sugar problem.

I finish up and we head out. My phone is acting funny- it wont let me answer calls. I think it's the higher powers saying go and rest you nut. The hospital number pops up. So I rest and check messages later.

It's  a message from my onc. I have adrenal insufficiency. I have to start hydrocortisone. No worries- we have bottles of the stuff in the house until we can get back to Tripler- which will be soon since I have a new referral to adult endocrinology. I wonder if the kids endo might see me. While I am on the phone getting details- Phil gets a call that they cannot do my referral to endocrinology since the system says we have not been in the system since 2011. Which is fricking HIlarious. We sooooo have been all up in the system since 2011. I mean really- I'm there every 3 weeks. I just had brain surgery and a PET scan. Those are not cheap endeavors. Good times. So Phil spent the rest of his day off trying to fix that to no avail.

I spent the afternoon resting and covering the craniotomy scar of my newest Buddha. Lil Phillip brought him home last night. He's learned that Ross is a good place to spend his work breaks. He's been buying clothes and the occasional gift. It's sweet. So the Buddha had a cracked head- but he presents him to me and says it's hardly noticeable and I got a great deal. That kid. It was just what I needed.

Monday, April 17, 2017

Cup Theory

My cup is empty. Phil's cup is empty. The kids seem to have some left in their cups and they leave them- the darn cups all over the counter. Sometimes 2-3 cups a day.

A while back, a friend, also facing chronic illness, lack of energy and many physical complications, shared with me the Spoon Theory. The entire article can be found HERE. The essence is that each person starts the day with a certain number of spoons and for a person with a chronic disability, illness, pain,  or depression- they start the day with less spoons and normal work requires more spoons- putting them in spoon deficit quicker. Those with illness tend to try and conserve their spoons whereas normals don't give it much thought.

The explanation made sense but as someone who doesn't use a lot of spoons, it didn't speak to me. But The other night, we were out of "kid wine" aka sparkling juice so I grabbed a bottle of tonic water and a thing of juice and we McGyvered some kid wine. Kiera kept stealing drinks from the other kids- by pouring theirs into hers. Now the kids know exactly how much kid wine they get- and how many glasses per bottle. She was gauging her consumption based on faulty numbers. But it occurred to me-cup theory.

Each day we are supposed to have so many glasses of water. Let's say 8 cups. Well with chronic illness- you might only wake up with only 5 or 6 cups. This can be due to disrupted sleeping patterns from meds(steroids anyone) aches, pains, or any other reason.  You need a glass for each meal- that's 3 more. Let's round up and just say you start with 6- so you have 3 cups left. You need maybe 1/3 to 1/2 of a cup to take meds. 2.5 left. Now maybe you need to go for a walk- it's hot out- that's another full glass. You have 1.5 glasses left for any incidentals that might pop up throughout the day. You have to ration sips.  Cups do no carry over. Some days you may wake up with 5-6, on a good day 7. On a bad day- 3 if you are lucky. You can't predict it. That's the tricky part. Somedays at noon- you turn around and all the cups are empty. it just happens. whether someone took it, it spilled- who knows. you are out of cups.

Here's the great thing about cups. You can share. Generally those who have had empty cups are more inclined to share whatever they have- even though it's less than average with a friend or someone in need. If they have 1 cup left- they will give you half. Those who have never run out of cups- tend to use them up- knowing all 8 will reappear after a good night's rest. When someone makes dinner for us, helps transport kids- it preserves my cups. When we can't make certain events- it's because I've had to triage. Social interaction takes at a minimum 1 cup. There is the showering and the travelling and the smiling while saying I feel good. I've given up on good by the way- the answer is tired and I have found people ask a lot less. Others go out of their way to share their cups with us and its always people who I know carefully ration their cups. Which makes it so touching and so hard at the same time.

I absolutely hate that I have no cups or portions of cups to share right now. Every last bit goes to each day and then Phil and the kids. I know Phil empties cup after cup into mine trying to help. I still can't catch up and we are both empty. This is a problem. And then the kids do something amazing- just when you think they've drained every last drop- they reach over and dump their cup on you. Sure it is a huge mess and You just leave it because in that moment all of your cups if not literally- are figuratively full.

Friday, April 14, 2017

Making an IMPACT

It was another entirely boring Mallory weekend. Phillip had junior prom with his girlfriend(senior prom is in 2 weeks). Last week we ran into to town to grab his suits( we figured with 2 proms and graduation-) he should have something nice he owns. I got a life insurance policy my 18th birthday- it didn't seem like a great present at the time- but I am grateful for it now. Phillip worked late the night before and slept in. I tried to save my energy for the pre prom dressing and picture push. Fortunately his girlfriend's family had most of the details figured out. We also had several performances with our dance studio- Impact Dance on Sunday.

Many moons ago- when Bella and Lily were itty bitty- they took beginning ballet with Ms. Marika at Kapolei Dance and Yoga. They loved it. I loved the casual family atmosphere and the proximity to our house.  We no more than started and were put on the cancer roller coaster with Lily. Dance was a bit of normal during a terribly abnormal time. Due to her numerous hospitalizations and neutropenia, there came a time we had to put a hold on dance.  Once she finished treatment and we all knew how much she loved to dance, we were ready to pick dance back up. Lily found her love of Hip Hop. This time we were around enough to make it to recital. In that time frame Phillip was diagnosed with diabetes and kept us medically busy.

A couple weeks before recital, I sat in the car waiting for the girls. I was waiting for the results of a breast biopsy. I got the call. It was cancer. Phil was out of town- I was sitting there by myself. I did not want to be the bearer of bad news, again. I called my mom. She said no matter what it was going to be ok.

The next time is a blur- appointments- craziness. This time of year is particularly rough- it's my cancerversary, as well as the anniversary of Bob and Dad's Deaths. Fortunately April- May is so busy with school events and recitals- we rarely have time to mope over it. There were surgeries- a major trip to visit family and back to the routine. Lily and Bella were both in school and I tried to consolidate activities for sanity. They did cheer and hula. But Kiera wanted to pursue acting. There aren't a lot of opportunities on an island and I honestly wasn't ready for the audition turn downs and the politics of theatre. We couldn't afford the time committment. I also was not ready for the sheer cost of it.

Then my cancer metastasized.  I couldn't take Kiera away from something she loved and I tried to keep up with the activity. I noticed she picked up choreography really quick and she loved to dance.  With 3 other kids and all their activities- we tried consolidating- but soon enough bella and lily wanted to do soccer. Phillip was in wrestling. There was only 1 me. Kiera no longer was giddy after rehearsals. Lily and Bella were expressing their desire to do their own thing.  I just couldn't get everyone to separate activities on my own. You might find this shocking to know there is a lot of drama in drama. After being told she needed more voice lessons, more dance lessons, more acting lessons, I finally made her choose her 2 favorites. Dance and voice won out. I looked around- the most feasible option for us for dance - Impact Dance.

It's been 2 years and I'd like to say that we hadn't had any cancer hiccups this go round- but we all know that isn't true. Yet Impact became Kiera's home away from home and she really has grown so much. She dances at least 10-15 hours a week and she comes home tired but happy. I see growth in her skills and her confidence. She is great with the younger kids. So much of this is due to her ballet mistress. Yet all the instructors are equally as tough and encouraging.

Ms. Alecia sees the good and brings out the best in the girls. She is tough, fair, and expects them to work hard, yet you can tell she is no stranger to hard work and tough situations. From the beginning, she's supported Kiera and our family whether it was rides to and from class or jut a few words of encouragement. The girls are preparing for the spring recital and the studio received a request to perform at the Smurf Movie premier. Ms. Alecia choreographed a very special piece featuring her daughter who is no stranger to rare medical issues.

Life is hard. Things don't often go as planned. Yet the impact of negative, tough times, shapes us into who we are. The sayings are true. I've never met a tough person with an easy past. Everyone is fighting a battle you know nothing about. Sure you can recognize cancer patients by baldness, or a person with paralysis by the wheelchair. For every visible disability or condition, there are several you don't see. April is also Autism awareness month.

Just as many times I don't want to be seen as the cancer patient. I know many other don't want to be labelled, just understood. Easy tasks for some take huge amounts of courage and effort by others. In order to raise awareness and make an impact, sometimes labels must be applied but they are not the only things that define us.We define us.

I've always said if you can impact just one person's life for the better, you've been successful. In this time of social media and viral videos- there is the ability to connect to many, but how do we make an impact? We go back to the basics. We find what we love, we do it with passion and we share that passion with others. Ms. Marika and Ms. Alecia have done this for years for our family. I often use them as examples. You don't have to be on Broadway to make a huge impact. Both could still be performing at a professional level, but they are sharing their love of dance with the girls. They are making an impact.

Wednesday, April 5, 2017

Stretch Marks

When I was pregnant with Lil Phillip- I was prepared for stretch marks. Growing a human in 40 weeks- well there is a lot of growth involved. The skin either stretches or doesn't. I  had stretch marks- he was 9lbs 5 oz and pretty much all noggin. I just wanted a healthy baby- if stretch marks and weight gain were a part of the package, then so be it- I wasn't a swimsuit model before- no dreams shattered there.

After my brother Bob had surgery for his brain tumor and chemotherapy almost killed him- he was on super high doses of steroids. He gained a huge amount of weight in a short time. He had the wide purple stretchmarks everywhere. What skin hadn't split was so thin it was almost transparent. It was painful to look at. That was the cancer I knew. It was the ugly side of cancer. Before glitter and ribbons and dancing in ORs before surgery.  He no longer looked like my brother. For years after, I would hear or see stories of kids with brain tumors- pictures posted - all were the same bloated look. It broke my heart.

Treatment of brain tumors doesn't have to worry about stretch marks. The advancement in the past 2 decades is nothing like that of say- breast cancer. There are many reasons for this. There are many more women with breast cancer than people with brain tumors. Boobs have generally been favored over brains since the beginning of time(its a procreation thing- think caveman- big breasts imply fertility- great swollen organs that nourish offspring) The blood brain barrier prevents many chemos from getting to the tumors(one way our smart brain defenses protect our most vital organ). Whether the reason is we have better technology to detect the tumors sooner or highly skilled surgeons are able to remove even the trickiest of tumors more successfully- the survival now is much better. There is hope. I remember the complete feeling of despair when my dad was diagnosed just 3 years after my brother- I knew how that would end- but I had to keep hope. you have to. The experience with Bob, altered the approach to Dad's tumor. It wasn't any more successful. In fact we learned that radiation makes some tumors really angry.

I have never read Anna Karenina. It was the assigned reading that year in English. I would drive my dad to radiation treatments. I would sit in the waiting room, reading the same paragraph over and over or realize I was just turning pages. I think cliff notes(for you youngins- cliff notes were the wikipedia for books before the internet- kind of like when we were cleaning out my closet and I found a small tripod.- the girls were fascinated by this ancient artifact- WHAT IS IT? oh my dears those were the first selfie sticks. I think about radiation- I think about Anna Karenina- I have tried to read it- The emotional response is too great. Radiation damage is cumulative in the body. So is the damage to those who are constantly cancering.

Often our tumors are rare- we have to research fast and decide fast. There aren't standards or protocols because there just isn't enough data. I was terrified of radiation because of personal experience. Gamma knife radiation worked for me and it didn't for very different reasons. With Li- Fraumeni Syndrome- we have a mutation in the Tp53 tumor suppressor gene. Basically the blueprint for our p53 is messed up and it doesn't stop tumors the way it should. If you are curious about some of the details- there's a good post HERE about p53 mutations. One of the things it's supposed to do is mark "bad" cells so other cells can fix them- if they can't be fixed- they get taken away. Well the radiation killed the tumor cells in the toomahs in my brain- but for the big toomah we named boobie- my body didn't clean up the dead cells and then responded with swelling. In walks the need for steroids- steroids are derivatives of cholesterols that have so many functions in our bodies. The most important ones are sex hormones(estrogen and testosterone- boy and girl stuff) and corticosteroids which regulate blood pressure and inflammation. We learned tons and tons about corticosteroids with Lily monkey- her body doesn't produce enough- hence our need for medication when she's sick. We use hydrocortisone for her. It is a lower- maintenance dose. Other steroid medications like prednisone are used for allergies and inflammation.

While we watched Boobie the brain toomah- I was put on steroids- to help with the swelling in my brain. It's a balance- I wasn't having symptoms, but scans showed swelling. Being on steroids could cause other problems and mask symptoms. Ironically one of the side effects of steroids is weight gain. The worst side effects of dexamethasone(powerful steroid - 4mg tabs are green and appropriately so for hulk-like behavior it induces) can be insomnia, weight gain, horrible mood changes. I shared some of the fun side effects- insomnia( or now what my friend Row labeled it as(Insom nom nom nomia) lack of sleep partnered with the need to eat every waking second. We used to just marvel at lily- called her the carb monster. She would have rage at chemo( massive doses of steroids). I now understand. Some things you have to experience to understand. Lord help the poor soul that woke her up when she finally fell asleep.

You will notice if a group of moms are standing around- their talk will migrate to birth stories- a common bond. Cancer patients- horror stories. Teachers- Student and crazy parent stories. Anyone whose ever taken steroids- How crazy steroids make you. Like bat shit crazy. All energy diverted to not acting on impulse- i.e. strangling people who do stupid things.

So now that  Boobie the toomah remains have been evicted, I am trying to wean off steroids. The thing about the adrenal glands(2 wonderful little organs that sit on the kidneys and make steroids) Is that they are smart. If you feed the body steroids- they stop producing them. Why milk the cow if you can get it for free? SO as you go off steroids- you have to taper so the adrenals get the message to wake up it's time to work again. The longer you are on them- the harder this is. I wasn't on very high doses but I feel like I can't taper off the last bit. I had some crazy ankle foot swelling post surgery- it was so bad even Kiera felt bad for me and would help try to rub the swelling out. One of my birthday presents(besides the ever awesome squatty potty- don't judge we didn't do any of the fun you are getting old presents last year due to said toomah) was a pair of plantar fasciitis compression socks.

After surgery- after my first real shower I went to put my hair up in a ponytail, to keep my incision dry and saw them. THEM. The dark purple huge stretchmarks under my arms. Ouch. Flashback to Bob's skin. Tears. Phil- does it hurt- no, surprisingly no- not in the way you'd think. Not for vanity, not physically. But yet another reminder of where we are at. growing too fast. Steroid weight gain is a beast. I tried salads, walking, whatever- still gained weight like 5 pounds while "dieting" weight. Even talked to the kids endocrinologist- not much you can do except get off the steroids. I was trying.

Then chemo, then the flu- all times my body wouldn't make enough steroid and it needed a little help.  Finally I got down to zero. Then chemo Monday. Monday night was not my favorite. My emotions were all over the place, every single body part hurt. Even the stretch marks.  When things hurt I find and focus on parts that don't hurt. Yep nope- my cuticle- oh wait there were hangnails nevermind. Funny how with neuropathy- you can simultaneously hurt and be numb at the same time. Not excruciating pain. Just enough to prohibit sleep. So there was the insomnia.

Yesterday by orders of good friends(husband included) I stayed on the couch all day. PJ's and all. Around noon I boiled pasta for dinner, that was the extent of my activity. Daytime tv is not very entertaining. I took a min dose of steroid and felt much better within a half an hour. My sister in law called to check on me and see if I wanted visitors- if it requires getting off the couch or putting a bra on- I'm probably not visitor friendly. Phillip brought Lily home from school- you are still on the couch? You must really not be feeling good.  Nope.

Now we keep trying and hope my adrenals wake up rested and ready to go. I'll give them time. No one likes an abrupt wake up. As for the stretchmarks- I'm still here and oh how we've grown. Yes there's the 75 pounds extra that need to go. But emotionally and scientifically since we started, like scars- just extra marks on my body road map of the experiences that make me- me now. No they aren't tattoos- but they tell a story just the same. A permanent reminder of my growth.

Lily Kay Monkey

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