Sunday, November 12, 2017

For Bobby

November 12, 1974 my brother Robert Donald Connolly was born. Robert after both my dad(his middle name) and my mom, Roberta. Donald for my dad's dad.

He was a very sick baby. Heart problems, lung problems, stomach problems. He wasn't expected to live a year. His first year was full of hospitalizations. Yet he defied the odds. Until the fricking brain tumor.

We were not quite 2 years apart. We had a pretty normal childhood. I knew he was sick as a baby, scars on his chest and throat stayed the same size as he grew around them. I never knew how precarious that first year was. I knew that although we were treated normal- he wasn't pushed to be as active as other kids in sports. I never questioned why-I just knew it made mom nervous. But just about everything made her nervous. That's just how moms are.

He loved bananas. So I hated them. He wanted pineapple upside down cake for every birthday- pretty much it was all about the cherries.  He loved cars. No one could ever tell the story better than my dad about our short stint playing pee wee baseball- Bobby used to smuggle hot wheels in his glove and would sit out in right field- forging paths in the dirt for his cars. I can't hear Peter, Paul and Mary's Right Field without ugly crying, or John Denver's For Baby, originally titled For Bobby. Fortunately neither song gets airplay and only randomly pops up on shuffle. Or days like today when I play it while Phil n the kids are at the movies.

We hung out with Melissa and Jason. Roughly our ages, I always envisioned he and Mel would eventually get married, making us real sisters. She was his first kiss- waiting for the bus, they were 5. That sealed the deal in my book.  She and Jay message me every so often when they think of Bobby. Other than family, I often wonder who remembers. As much as it hurts that he is gone, hearing he is remembered is the gold that fills the broken cracks.

He had posters of Ferraris and Lambourghinis in his room when he got older. When I turned 16, we were gonna buy a Jeep together- I got to pick the color, it was going to be blue.  He loved music- he introduced me to Europe and 2 Live Crew. Ironically we sat and listened to the Final Countdown on his walkman over and over in the hospital. Countdown to what, we had no idea at the time. Going home, feeling better, something. Mom played Pachelbel's Canon in D constantly as the countdown kept ticking, the tumor unrelenting. When Phil and I got married, it had to be Pachelbel- not because it was the trend, but because I had to attach happy to the song, it was already a part of me and I could not be debilitatingly sad every time I heard it.

The only time we were on the same team was when we were both against something. We fought a lot. In high school we rarely talked. He had his own set of friends, Jimmy and the other Bobby, he now was just Bob. They were into cars. We were happy forging our own ways. We still would decorate the bay window for Halloween- before everyone started "decorating" for Halloween- we'd start right after school so it would be lit up when mom and dad got home from work.

Our discussions consisted of don't tell mom and dad or else I'll tell them this. We were keepers of each other's secrets. The biggest one being when he was in a rollover car accident. It explained the headaches. We were in the same level math, I'd go ask for help- he'd yell at me to get lost. He was failing. It was a secret that wouldn't be kept for long.

I remember his hands. Phillip has his hands. He would have been tall. All torso like my dad. He would have been the best uncle. He would have been a great husband and an amazing dad. But he never got the chance. When my kids struggle with normal, I am constantly torn between being thankful for normal and can't we just skip the BS? I could sit around and be angry- lord knows there's enough anger and saddness- but that would be a disservice to him, to his memory. He and his death are a huge part of why I approach life the way I do. We are impermanent. We will be only memories to those who love us and they are also impermanent. But I cherish the memories. And we are what we pass on and we pass on pieces of those we love any way we can. I remember the way he laughed. sneaking around together early Christmas mornings, time outs in our rooms- sitting in the door jams whispering about how much trouble we were in.

I remember him every day, but days like today he is both closer and further away. The sadness heavier. When we were first trying to cope with losing him, my mom used to say- I had 15 more years with him than I thought I would. In that I saw her strength,  but also the great sadness that never leaves, the nervousness made sense. I recognized this when I had my kids. Even more tangible when Lily was diagnosed. Then Phillip's diabetes. Every year when we scan them. But we are not permanent. We do our best to live as long as we can - the emphasis on living. We make the memories that others carry with them. We remember.

I miss him every day, but today a little more as we make pineapple upside down cake. Happy Birthday Bob.

Wednesday, November 8, 2017

Insufficient Breaks

Ah Life. The ups. The downs. The more downs.

Lily was looking for pictures the other day and stumbled across the blog. She read quite a few and we sat and talked. She had lots of questions, she didn't remember a lot. Part of the reason I started blogging was a journal-now reading back- I don't remember a lot and then the words crash around me. It's not easy. We've kinda dealt with a lot of shit. It's been tough to write lately- finding time, emotional energy and not be negative. Although as a good friend reminded me- you can feel the toughness and you don't have to be happy about it. Happy about it has been elusive.

Lily is doing the best of all of us right now. She and Kiera remind me a lot of me at those ages. Bella is truly a unique creature and dealing with being 11. Being 11 kinda sucks- in case you hadn't heard- she will tell you. The snark is strong with that one. Lily reads and reads and reads. real books. she prefers them to the kindle or electronic versions. I understand. She says she just likes the feel of the book and turning the page. We visit the library, a lot. She has friends at school and seems to be really happy.

Kiera is struggling with the challenges of the IB program as well as the time requirements for dance. It is so different than where we were with Phillip at this point. She is realistic and although she loves to dance- she does not think she wants to make a career of it. I just hope she will continue to dance, she would like to start a club at school. She is talking about withdrawing from classes after their Nutcracker performance. She really stepped up and became the little mommy for us last year, I really can't argue with her wanting just to have time to be a teen.

Bella is 11. not a little girl - not a woman- plain ol trying to figure things out. We just extricated Lily from this awkward place- or she grew out of it- so we apply miracle grow and hope for the best. Tomorrow is her arm MRI- finally-hoping to rule out some of the anxiety around that thing.

Dobby is like having a toddler. He eats things he shouldn't, poops where he shouldn't and needs lots of attention. Of course everyone gives him attention in their own way and that amounts to several hours of circus dog training for him each day. I walk him a bunch which is good for me physically and emotionally and he enjoys quiet naps in the sun while the kids are at school.

My sweet Phillip. He turned 18. And magically did not instantaneously gain the wisdom of life that adulthood promises. After being in a relationship for a year, young Romeo and Juliet were told they could no longer see each other. Although I don't agree with how many things have been handled, we absolutely respect her family's wishes. We lost part of Phillip last year, I thought it was me, I remember all too well being surrounded by sickness my senior year. I practically lived at Phil's house that year,  But it wasn't about me. Phillip was in love. All focus was lost, he started to lose himself in the relationship. His grades were the first indication, then he didn't apply to some colleges we had talked about, he stopped talking to us, he wasn't careful with his blood sugars- which made him angry, a lot.  He was going through a pretty normal thing with a bunch of not normal. We were trying to cope with a pretty normal thing with a bunch of not normal. Just when I'd see glimpses of him and think he was moving on, he'd slide back. My poor child - cursed with his father's loyalty and my passion for saving lost causes.  Oh to be able to share the insight on that and have him hear me.

Parenting is not for the weak. You lay the foundation and just pray it holds. I wish I could prevent him from heartache, but these are the experiences that break the heart wide open. With the right healing- the capacity for love will be even greater.

My adrenal glands just aren't recovering. I try to manage physical and emotional stress the best I can(I have a new dragon egg smelly thing- as the kids call it- a diffuser for relaxing oils)- we are the opposite of relaxing- even on our most laid back day. The night after my last chemo- I went into adrenal crisis.

I thought it was a headache. Which stresses me out- it could be the weather, it could be the stress- it could be more. So I retreated to my room with oils, tylenol, and ice pack then a heating pad. Within minutes the rest of the available Mallorys were sitting around, playing with Dobby, rubbing my feet. Everyone knew something was up. My stomach started hurting- again catch 22 stress- then the vomiting began. I tried zofran, I tried heavy steroids, everything came back up. I felt horrible. Phil decided I was not in fact contagious and needed the shot. He tried to take my puke bucket away. I cursed him- I think it would have made a great remake for the Exorcist. He finally gave me the shot, and we headed to the ER.

Of course the ER didn't know what to do with me, we enlightened them. It was slow going. The shot kicked in- iv zofran was lovely and fluids helped. I upped the steroids the next few days and then wean back to my regular dose. The dose changes are always tough emotionally. And life goes on and I make dinner because Phil has extra work to make up for the unintended day off. It's a reminder to take better care of myself for everyone's sake and well adrenal crisis really really fricking sucks.

My adrenals are quitting, my platelets aren't bouncing back- nothing transfusion worthy- just bloody noses and bruises. Like anything- I know so many who are far worse off- so I dare not complain. But my gut says we need to strengthen my body again. So after meeting with my oncologist and some thinking- we are holding chemo- the idea was until we do a PET scan. IF there is no progression, or evidence of active disease- we can evaluate and come up with a balance. But of course the PET is not available until the week after Thanksgiving- which would mean skipping 2 treatments. No one knows the right call. SO it's mine. Choose your own adventure cancer style.

SO I go with what I know versus what I wish. I know that I have aggressive cancer that keeps trying to find a way to thrive. I wish No evidence of disease meant I didn't have to worry- I will always have to worry- it's just at what level. I know it could be worse. I wish it was easier. I know I am tired. I wish I wasn't. I know that chemo is keeping the cancer at bay. I wish it didn't damage the other systems in the process. It's time to mitigate damage before it's too late, while not letting the cancer get ahead and this is what managed care is. It's not a cure. Other things go wrong, you have to roll with it and hope to keep ahead of all the bad things. And sometimes you just need a break.

So I will probably head to chemo next week and pound steroids like a world champion cyclist. Thankful for a little break, help the kids with the big ones, wait for the PET and hope for the best.

Wednesday, October 11, 2017

Don't be an Ass.

It is fairly frustrating trying to raise humans up when the world around you seems to be going backwards.

Friday, Lily came home from school. She's our talker. No surprise there. I often tell people, the Mallory's don't have secrets, we have a Lily. If you want to know anything, just ask her. She tells me who is doing what, funny things her teachers say and mostly interactions she has with people.

Friday's interaction was disturbing. She was walking down the hall after 5th period and a boy ran by and grabbed her butt. I set down what I was doing- looked her in the eye and told her that is never OK.  Bella pipes us- yep- grab (pause) butt Friday. (they aren't supposed to swear).  Grab Ass Friday is a THING in elementary school too? well actually says Bella- some boys try to but they are stupid, but today a teacher grabbed a girl and yelled at her.

So many things to discuss. First things first. Lily. who. what. where. when. She tells me. She wilts a little. Part of her was flattered. I can understand. Middle school is tough enough, trying to figure out social whatevers, trying to be liked by little assholes who end up being big assholes and not quite understanding that someday the pond will be much bigger - and the pond needs the good to balance out the ass.

We live in a country where we still have discrimination. Try as you may to believe otherwise and act otherwise, there are many who want to make the pond a swamp while telling you they are draining it. You can add all the gold and water features you want to a swamp, it's still a swamp if it is all sludgey. We live in a country where rich men can grab women inappropriately, laugh about it and there are swamp dwellers who feel that is still less evil, even worse that it is OK. It's a huge setback. We have to discriminate, people are just doing it wrong. Do you want the fresh chicken or the injected, mistreated, genetically modified chicken. You are what you eat. Well shit- I want the fresh chicken then. I just discriminated against the poor injected, mistreated, genetically modified chicken. But it's Ok- I know mutant chickens. smh. Not all are bad for you. We can be discriminating without being unjust. We have differences. Many of these differences need to be celebrated. Unfortunately, a lack of understanding that differences aren't always bad, leads to fear, fear leads to discrimination.

But I digress- I can spout all I want to my children but it means very little if not followed by action. We have to not only BE the good, we have to DO good. I know Lily wants me to be outraged but also sympathetic. She does not want to be singled out or known for THIS. At 12, this is fairly basic human nature- and it's flipping confusing. We discuss how to handle these situations, she said she pushed his hand away. In mama bear mode I suggested that next time a punch would be acceptable and I'd gladly defend her. I know unfortunately this will not be the last time one of my girls deals with sexual harrassment, "boys will be boys" and trying to find the line between good natured fun and objectifying power plays by cowardly people. SO I email her principal. Lily looks terrified. I try to reassure her that she will not have to be front and center in this issue but we have to make sure the principal knows it's going on so it doesn't continue.

I think what bothered me most was that Lily was not herself all weekend. It wasn't a tummy ache, but she "just didn't feel good".  We talked about how this is her gut telling her something was wrong. This is huge. Lily prides herself in being the teacher's pet and following the rules, she has no problem turning rule breakers in. But somewhere in this growing up process, we learn that behavior is less acceptable and cool. She couldn't control the action of that boy in the hall on Friday, she could only control her reaction to it. He had the problem and he was making it hers. So although it's hard to talk about it, we have to do something so other people do not feel this way.

 I was relieved when the principal called me Tuesday. I was pretty sure this would get lost in the holiday weekend flow. She handled it admirably. She wanted to make sure Lily knew she could come to her at any time or any teacher with these concerns and they would help and she could be anonymous. She also wanted Lily to know how sorry she was this happened to her.

We also talked about my telling Lily to punch a kid next time. As a mom, she understood, but we can't meet one assault with another. That made sense, if everyone today retaliated against brutality- it would be chaos. Oh wait. Ok in the heat of the moment- mama bear reacts, but after discussion and rationalization- we have to stick to who we are -we do good. even if others do not. 2 wrongs do not in fact make a right. It is pretty tough to understand- especially when you are afraid your concerns won't be heard.

I know where Lily is coming from. Part of me didn't want to be the mom who overreacts and makes a mountain out of a molehill. I called lil Phillip. Dude- quick question- some kid grabbed your sister's butt- Is Grab Ass Friday a Thing?

No mom. It's Sexual Assault. It is never a THING. That's just wrong. I'm at work.

Ok bud- that's all. And like that- despite many doubts about if anyone hears me, I'm trying my damnedest to swim upstream and give my kids a fighting chance in a time where the good and common sense seem to be on the losing side of the battle. I think that makes me a smart- ass.

Friday, October 6, 2017

Dobby's Kind of Magic.


I am someone who believes everything happens for a reason. I know it's no longer a popular phrase. How people cope with this phrase actually can tell you a lot about where they are in their grieving process.  Sometimes we don't get to know the reason, sometimes the reason is not something we can cope with. That is hard. Loss is hard.


When you deal with cancer(or any trauma), there are many losses, and they occur at times you don't necessarily expect. Body parts, freedom, control, normal. Yet there are many other types of loss. Sometimes you get warning of impending loss and you take steps to mitigate and your heartbreak(not possible, but we try) and sometimes loss comes as a hurricane out of the blue.

I've sat down many times to try and put into words how hard the past few months have been. I just can't. Finally Phil said- we lived through it, dwelling on it will not make it easier. dwelling/dealing tomato/tomatoe potato/ potatoe.

Phil's schedule has been ridiculous. The standard- must do as much as humanly possible while things are "calm". He's flying still, sitting alert still and still squadron commander for the 169th and taking the online air war college course. He's got a plan, or five, I just am trying not to fuck it up too much.

Phillip and his girlfriend broke up the first week he was in Washington this summer and they just said goodbye this week. It was excruciating to watch. Whoever said parenting was like taking your heart and letting it live outside your body- was fucking spot on. He also had injury to the insult of a wonky lump that turned up on his rib. It reminded me enough of my arm sarcoma - I had a few sleepless nights. We had it removed- and fortunately it was a "just" a benign fibroma. When in doubt, cut it out.  Due to scheduling conflicts at Safeway, he resigned and is now working in the kitchen at Buffalo Wild Wings but is  keeping options open. I appreciate the new found focus on school and that these experiences are giving him.    

Kiera is dancing and working at i-trampoline. She's in the IB program in school. Her scans were good- still a wonky behind her knee that we follow but so far no problem or change. She has been begging for a dog for years. Please- I will do everything, take care of everything....more on that later.

Lily had clear scans and is loving the hell outta middle school. She rides her bike with a friend and is currently trying to join every school activity available from dance, to basketball and loves playing the piano in the cafeteria during lunch. Can we please have a dog- I will help with everything. 

Bella- is Bella. I've been worried about her, she's been pretty clingy since my surgery- understandably so- but it's just not Bella. She has a 2.9 cm wonky on her right humerus(arm) that we just had X-rayed to make sure there was no bone involvement(invasion, not  a good sign) and thankfully no. We will rescan by MRI, date TBD. She fell in love with Grandma Sandy and Ed's fur babies in Washington. She moped for weeks and pined over all things pug, terrier and puppy online. I will pick up poop. all the poop.

I am fine. Tired and focusing on the kids, basic daily tasks. I got to tag along to Alaska with Phil and then we had another fabulous trip to the east coast for his youngest brother's wedding. We were gone for a week and it was the first time we left the kids alone. Cancer after cancer, stress after stress- and this is the event that finally gave me gray hairs. But it was time. They did great. Phil promised them a huge HUGE reward if they made it through.  I think he meant Disneyland.

The night after we got home, we had family dinner and offered the kids an amnesty session. Come clean about anything that happened while we were gone and there would be no punishment. If we find out later- the consequences would be huge. Kiera immediately spilled that she did not hurt her foot in dance class, it was from kicking Phillip when they were wrestling. (There was a specific NO WRESTLING rule before we left.) Bella squealed that they pretty much only ate mcdonald's. No big reveals. Phil told them we were thinking of a good reward.

As the kids were cleaning up, Kiera brings me a picture of a rat dog. One of our friends rescued him from the street, couldn't find anyone who would claim him and he wasn't doing well with their other 5 pets. Please. Please. Just temporary. This would be a BIG reward. For years I've said no, I don't need one more critter to clean up after. We have Bella. We would end up with some mutant pup with medical needs. But he was cute and the timing, sometimes, well things happen for a reason. I contact our friend, we make plans to "meet" the little guy on Saturday- a week away. We had a week to get Phil on board.

I made sure each kid understood this was a joint venture and gave them all the questions dad would ask. We started a list of names. Before we knew it- it was Friday and Phillip and I were on our way to get lumpy lumpkin removed from his side.  As we sat in the waiting room, Phil sent the text- Ok, you can get the 🐶.  We made arrangements.

Saturday: As soon as he hopped out of the car- I knew- He was Dobby. And he was ours. Things we've learned:

Dobby is afraid of beer bottles, leaves, and water.

He thinks he is fierce.

He can dismember a stuffed animal in 3 minutes and does love socks.

He loves going for walks and playing catch. Phil, Phillip and Kiera are his favorite playmates.

Bella is his favorite. He snuggles with her at night. She puts him in pajamas that say- I'm not small, I'm fun size. She does in fact clean up all the poop.

He loves Lily and will hug her and loves to read with her.

He has an undescended testicle- Phil wanted to rename him Sammy small- who only had one ball, but one is better than none at all. So yes he's a medical mutant and to get him nuetered would involve abdominal surgery.

He snuggles on bad days and plays on good days. He adds laughter and fun. More so he gives us a reason to laugh and go for more walks and play. And to vaccuum more and pick up more. He gets me out of bed, he keeps me in the present. He is our lil mischievous house elf.

Sunday, August 20, 2017

Choking

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.

Love. 
Family.
Surviving. 




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. 
debonaire!



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.

Lily Kay Monkey

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