Dancing with MONARCHs

There are many trials for breast cancer. In the past few years- awareness and research for metastatic breast cancer (breast cancer that travels and sets up shop in other body parts) has increased.

Most trials get a number and a catchy name- because well cancer is business and pharmaceutical companies know this. The benefit may be life saving.

As of last scans(PET/CT and brain MRI)- I have mixed results. Some spots are stable, some new spots and some old spots seem to be healed.  The most concerning spots are in my hips, spine and a new little spot in my brain. This meant the therapy I was on (Kadcyla) was no longer doing enough to keep my cancer quiet. Hence the dance. After the hip mets, pain and radiation- I added an aromatase inhibitor(AI) to the routine.

Sciencey part- skip on if you do not like. We have hormones. They do lots and lots of things. Mainly drive us insane in the form of teenagers. Certain hormones "feed" certain cancers. Some breast cancers are "fed" by estrogen and progesterone- normal hormones but very tasty to certain cancers. Breast cancers also can have a mutation in a human epidermal growth factor(HER2). The breast cancer treatment game changed big time with that discovery. So 3 things- ER(estrogen receptors) PR(progesterone receptors) and HER2 are commonly tested in breast cancers to determine most favorable dance partners. + meaning you have, - meaning you do not. In the world of breast cancer dance partner options- I have a great dance card +++, triple positive. This means aggressive cancers with quite a few options. Unfortunately what works is still and bit trial and error from person to person. Although these cancers don't always respond to hormonal therapies - directed at ER and PR- the mighty HER2 drugs are pretty effective, for a time. I've done 3 of these- herceptin, pertuzumab and kadcyla. Then I had my female plumbing removed to address the hormonal effects, then we added the aromatase inhibitor- which is supposed to help mop up any extra estrogen. And dealt with brain mets/tumor which is problematic because not so responsive to chemo.

So we dance. Scan- treat- scan- repeat. I've been doing this for 7 years. Cancer is tricky and wants to survive. It's wants and a human's wants do not predict survival. You can want til the cows come home- pray, beg, plead, cleanse- most of it is a crapshoot. And with many chemos- it is very much a literal crap shoot. We've addressed the her2 successfully- now it was time to address the other 2 +'s.

Many don't call these drugs chemo. Basically meds designed to step on Estrogen's toes- so it can't dance. Other meds are designed to stop the cell from growing at a certain point. Kinda like feeding your dance partner spiked punch and hoping their friend will drag them off the dance floor. The 2 meds I am now on are the result of a trial called Monarch. As in butterfly.

The Monarch butterfly has a lot of significance for many. It is a symbol of rebirth, life changes, transformation. We released butterflies at celebration of life ceremonies, seen them released at others, and I am always on the lookout for one to cross my path- a sign. I tend to agonize over treatment decisions. I'll admit, I am tired. My team has invested a lot in keeping me around under my terms, they've earned some trust. So when my onc recommended Faslodex and Abemaciclib- I took the paperwork home- set it aside and tried not to think about the 90 some percent chance of raging diarrhea- low blood counts, aches and pains and painful shots. I took Kiera and we found a prom dress- She's going with a friend we've known since they were babies.  I went to Lil's Newsies production and last minute shopping with Bella- with ironing lessons. I finished up scrapbooks. Was completely unmotivated to clean- read several books. Started making leis for graduation. Talked with friends on the phone. napped. a lot. Busied myself with helping friends.  Cried a freaking bunch. The night before my appt to get the new meds and shots- I looked up the meds. Because I could still say no. I had never heard of Abemaciclib, until I saw it's trade name- Verzenio- the mad pooper med. But in combination with Faslodex- they were effective prolonging survival and time to progression in the trial called Monarch 2.

I've been struggling. Facebook depresses me, my kids are all teens and although funny- they are exhausting. This year I turn 43. Kiera graduates. These are two big events I have been working towards. "working" being taking chemo when I really really don't want to. Going up and down stairs like a person twice my age, losing feeling in my fingers, dealing with pain and exhaustion, all the time. 43 was the age my dad died. It's a new level in the dead zone. 25 years ago this May, I sat in the lobby of a funeral home downtown Denver as my mom planned his funeral. The name of the home: Monarch.

So I dance, with Monarchs. I adjust to this change and transformation- letting go again of what was, what might have been and be grateful for what is.

It Takes a Village, A Christmas Village.

The Halloween Costumes still littered the floor with random candy wrappers and paper plates strewn about. Kiera started asking about Christmas...

Months ago, she asked if she could help our friend Angel put up their (extensive) Christmas village. Years before, we had gone for a visit and the village was up- my girls were enthralled. I coordinated a date and a visit with Angel. Angel is one of my closest friends. And in our worlds, closest means infrequent texts and a couple visits a year.

She's one of those people I just connected with instantly. She's authentic, giving, and selfless. I had a daughter with cancer. She lost their daughter to a rare metabolic disease and now cares for her second daughter, with the same metabolic condition. When we first met, I knew she was my people and as the years went on, wondered why she still bothered to keep me on her list- because although she thinks I "get it"- I don't. How Could I? I did the 24 hour care of a fragile child routine for less than a year. It exhausted the eff out of me. I .can. not. imagine the years she and her husband have spent on that level of lack of sleep and adrenaline- and why?

For the smile of an Angel. And for her daughter,  a royal, heavenly character, Anolani. A sweet little girl who was brought into the world with so much love- not changing millions profoundly, but profoundly changing those she encounters. Like her family. And me. I see Angel, she is run down, she misses her friends, she is overwhelmed by daily tasks, yet keeps on. Because somewhere among the chaos is pure magic. That is why.

Bella had snuffles. We know that any illness is threatening to our little friend, so she graciously offered to stay home. Lily, Kiera, and I headed out to Angel and Ano's, excited to start the season of giving. We spent a lovely morning carefully unpacking and assembling a village of memories. Kiera taking the lead, carefully arranging everything as we ooohed and ahhhhed over every single one.  We get it. Each house, each tiny person represents a memory in their lives. A memory we now get to be a part of.  That to me is the magic of Christmas. The memories, the friendships, the family.

It took years, to get here.  Many of them, I wanted nothing more than to have a Colorado Christmas. For our family, between activities, work, medically, financially- it has not been feasible. We compromised one year and spent the New Year in Ca. Hawaii is paradise.  My kids think Christmas smells like flowers and a tropical breeze. We go through our traditions, but it's been years since I've felt the magic. After time, I've realized the magic of Colorado is still there, most of it is securely wrapped in memories. Memories that we've built and arranged and fixed.

I'm run down. I miss my friends. I miss my family. I am overwhelmed by daily tasks.  My friend Trish sends a simple text. Can you come visit? I'm worried about her. I mull over the possibility. Then The possibility became reality.

Kiera watches Hallmark Christmas movies year round. So this year we say screw it- we are goin snow balls to the wall and doing what we want- which is helping a friend set up a Christmas Village the first week in November. I had just returned before Halloween from getting to spend time with my nephews and their pretty awesome parents in CA, then on to see Trish.


The cooler weather of Washington, the cool rain and even a few flakes of snow before I left cemented my drive to have a good holiday season. The personal space, the time with friends and family was just what I needed. They were gifts to me, by friends who know what it's like to be run down, missing friends, and overwhelmed. There were so many years I rushed thorough the motions- mentally calculating what really mattered. Packing it in, not having the chance to savor it. So many times it wasn't my vision. The gift was in the time.  My gift to me was putting the fun holiday things first going forward.

the elves.

Last night, Phillip steps in the house and says- Mom, Have you gone FULL ELF? Well we HAVE
watched ELF the movie 3 times, while decorating

but it might have been the giant paper snowflakes and pool noodle candy canes littering the floor that gave him the idea. Our lanai still houses boxes- usually I rush to get things unpacked - this year I am working within energy confines and the participation of elves, intermittent at best.

so much glitter

The commitments of gatherings and class parties and such has gone down dramatically, by nature and by choice. We had a Christmas painting night, The girls set up "a pretty" tree upstairs, our Tree is beautiful- and stocked with memories silver snowflakes and teal bows- the glitter oh so much glitter, they just wanted a more cohesive plan,

GRISWOLD Jr. after I removed several cords...

the Phillips put up outdoor decorations, Griswold style while Kiera and I hung greenery, white lights and red bows on the lanai. Then on a weekly trip to Costco- I found our Village.

By ours, I mean Kiera's. We started it together, but it will be hers. The squeal of joy when she opened the box- the care she took finding each part and person a place. As she hugged me, there was magic. Kiera doesn't hug and she meant it. Over the years, her Village will change and grow. It will be moved, pieces will break, some will be fixed, others will break her heart. And someday she will get run down, she will miss her friends, us, and be overwhelmed. That will be time to call in the Village. Perhaps a good friend, or her mom will see what she needs and perhaps ask for a visit to set up the Village. 

Oct 5-8. The Pause of Men.

Over the past few days, I've had profound thoughts that get sidelined by normal stuff.

And well my memory is crap so you will not get to benefit from any of them because I quite frankly don't remember. brain tumor side effect, chemo side effect, menopause side effect- who knows.

After my first chemo stopped working- we attacked the cancer another route. I tried Aromatase Inhibitors(AI) which are actually pretty effective for metastasis. My joints ached, the anxiety was bad, insomnia, mini hot flashes. Menopause stuff. That's the point- zap all the hormones and conversion to hormones that feed the cancer. Those hormones have some positive balancing effects as well- bone density, joints and such(hence the aches), concentration, depression, temperature control... A lot of the same effects from chemo so I thought- eh it would be ok. Until it wasn't. So I stopped.

With new bone activity- it's back to the AI. Funny enough, my hip/spine pain went waaay down- but my knees feel like I was a linebacker back in college. That was one of the factors that helped- the knees hurt- but no where near what the back was, so for now that a QOL improvement. I rarely get to sleep until after 3, spend most of the day in a fatigue fog, and well I'm always hot. Not in the good way. Let's not discuss the mood swings. It's not great for interpersonal relationships. Yet I am here and kicking and find things to laugh at and traditions to keep, like putting up Halloween decorations with Bella after she came with me to physical therapy.

Then to keep things fun and interesting- Phil and I had an at home date nite. Because YOLO and we are overdue and the kids were all busy. I also wanted to have a glass of wine- or 3 and give pause to a momma friend whose son Brent's birthday was the 7th. Phil did not appreciate my completion of promised Menage a Trois.

Oct. 3-4. Family Matters

Wednesdays. Pinktober.  I've never been a pink fan. To each their own. Pink ribbons and pink marketing,  I think honestly the sports pinking bothered me the most. Instead of rage, I funnel that energy into other things.

Yet this Wednesday was Mean Girls Wednesday. The soundtrack from the Broadway Production plays over and over in the girls' rooms. Suddenly worlds collide. Snark and awareness. Snarkness? Awark? kinda like woke but with more snark.

Girls are mean. Middle school and high school are tough. Thinking it matters what people think- finding you stand alone when it really counts and then if you are lucky- finding your tribe.

At the high school here, they instituted business Wednesdays. The kids can skip wearing the uniform shirt, but have to wear at least business casual. Kiera and her friends- wear business pink. It's fetch.

Thursday. Back to PT. It's good. I'm sore, but the PT helps. I run to walmart. yeah that's right, respect. 2 outings- one day- woop woop.

Between errands- woop woop- I check messages.  Lily's called, a message- Something about Bella a fight at school and oh dear. Teens. This really only affects what I buy for Bella at Walmart. and my entire weekend.

By the time I'm done at walmart- bella is calling declaring she is sorry and will comply with whatever list of chores I decide. I decide we will continue this discussion at home.

And that occupies my/our Thursday night. CSI Ewa Beach- piecing together the drama- like sands through the hour glass- so are the days of middle school. So no we aren't perfect, we are real and we spend a lot of our energy making the world a better place, one
mallory at a time.

October 2- Therapy

There are many types of therapy. Emotional, spiritual, physical, psychological, chemotherapy, radiation therapy, . Therapy can help you go on when everything else seems broken. Therapy is a part of life- and you can call it whatever you want- living, recharging, coping. But when you need help, its important to get help.

After my dad died, I went to therapy for awhile. I didn't feel I needed it. It helped. a lot.

After I got married, Phil worked long hours. With 2 kids at home-I struggled with my new identity. As most moms do after the warm fuzzy of new mom wears off. My therapy became schedule. Fixing up the house, making a home. Being momalicious. Immersing in the fighter wife culture.

We moved to Hawaii, had a few more kids, way more debt and then the cancering hit. Inundated in saving Lily. Routine was our therapy. We went to some support group functions, yet although some of the needs were similar, each family has their own set. LFS put us on another plane. The kids met with a counselor while we were in clinic, which seemed to be all the time. The hospital hosted Oncology on canvas- a great art therapy opportunity.

Years of cancering does a lot of damage. Emotionally, spiritually, physically. The collateral damage can be great. The long term effects surprising yet expected, never fun. After Lily was finished with chemo, was a dark time for me. Those around you expect that "you won",  "you beat" the cancer. Everything is great. When in actuality- you survived. I just survived. I wondered when, how long we'd have before the next cancer would throw us back into the fray.

Medical quiet time was short. We were just getting a handle on Phillip's diabetes when I became lumpy. A chunk of arm and breast sacrificed to the Cancer Gods with hope that we could buy time. If it can't be medically quiet, we learned to settle for time. We embrace life, check off bucket list items, hug a little more.

The effects are cumulative. After awhile, your energy stores deplete, no matter how you try to replenish them. Others help get you to the next piece of calm.

We kinda chart our own course. I went right from surgeries to travelling back to life.  Before Cancer, I had been pretty healthy. You know- healthy enough for tumors to thrive. After, I stepped up physical activity and we ate even healthier. My cancer still metastasized. Chemo made me feel weak. My genetic counselor called because she went to a conference and found a great physical therapist near us. I could get acupuncture and they could help me feel stronger. Physical therapy became a valuable part of my routine. It got me out of the house, it kept me physical and overall helped me feel better.

Sometimes I dance with cancer. Sometimes I dance with insurance issues to get the therapies that help. Every person is different. Each therapy shows that. One size does not fit all. So what I've learned- find what works for you. If it's getting up every day and doing a full face of make up-taking walks- drawing-writing- do it. Do it to feel better, do it for you.

October 1 - the heart

Despite Kiera burning a pumpkin spice candle for the last month,  October still snuck up on me.

September’s focus was childhood cancer awareness for Living LFS. My favorite part of “the job” is support. I was overwhelmed by the response from parents willing to share their mini mutants. I messaged several throughout the month, exchanging stories, fears, hard times. We work really hard to stay upbeat. I started posting on my personal page about Lily’s cancers. I felt the love but also heard how hard it was. Yeah it was. So I stopped. She is my positive, every day. This month marks her 10th year as a survivor. That is huge. I also know how excruciating the month is for so many who have lost their babies. My heart broke a lot,.

We also celebrated my 19th year as a mom. I mean Phillip’s birthday. We had our traditional Cheesecake Factory dinner with his friends then they went out on a yacht to celebrate. We are still transitioning with the man-child to adult thing. Cancer has eternally screwed, I mean skewed my perspective.

October marks my 5th year with Mets. So appropriately, today was a chemo day. I have to say, I still dread it. The team is great. It really doesn’t hurt bad- I get a few pokes- I spend some time hooked to an IV, we go home. There is usually waiting. I’m not good with waiting.

My blood work stalled. When it came back, I knew my nurse was going to be disappointed in my potassium levels. I haven’t been taking the supplements. It’s a process, I can’t swallow them, yada yada. Minor thing. She doesn’t harp, she problem solves- would I be more likely to take a smaller pill. Yeah. I only take about 9 pills a day- smaller would increase likelihood of compliance.

My doc comes by and pets my feet. My left ankle is a little swollen- but I’m pretty sure that’s due to the new aromatase inhibitor-and my joints hurt and swell. Physical therapy is helping- my back pain has improved so much already I feel human again. How’s the lump?

So Yeah she isn’t petting me out of love she’s looking for this random lump comes and goes on the top of my foot- X-ray declares it a bony spur thing and also found 2 other issues with that foot. I should probably name it so I remember it. But it is currently  gone. So there. Doc is puzzled. Yeah yeah one lump at a time.

Well my ECHO was last week. They look at the ejection fraction- a measure of how much blood the left ventricle pumps out. Many medications weaken the heart. Drugs are bad mmmkay? Unless they are saving you, but they still can have some bad effects. Perpetual risk - benefit analysis. One of the reasons I did not do chemo initially was fear of doing damage. The heart bears a lot of the strain, on many levels. My EF was lower- not bad- just hey what’s up kinda thing. Well my last EF actually went up, different tech- yada yada. So the overall decline wasn’t really big. I’m still in fine zone. Need to be careful- you know- take supplements and shit so my heart doesn’t have to work harder than it already does.

We usually get home with an hour or two before the kids get back from school. I rest, Phil works out and runs to Costco for easy food for the week. He then grills dinner. I heart him so much.

There were several newbies in the chemo bay and really I just kept silently chanting “bless your heart”.  It was relatively quiet in the bay. One young mom has half her family there- fun grou-kept giving the dad shit. 2 older guys who slept very loudly. Lots of snoring. 2 other youngish ladies. I dread pinktober. You never know who is gonna show up looking like they’ve just taken a dip in Willy  wonka’s pepto river. None today. A lady on her second chemo, very chatty very peppy- would fit right in with the mutants was chasing Pokémon with young mom’s husband. Young mom is struggling with iv and chair- obviously needing to go to the bathroom. She casually defends herself- I have no idea why I’m peeing so much. Oh that’s easy I told her- you are on your second bag of fluids- you will spend all your time in the bathroom. That causes you to pee? Um yes, hydration causes you to pee. Bless her heart.

2nd chemo Pokémon lady is quiet. Ah the Benadryl is kicking in. She mentions how she didn’t think chemo would be as bad as it was last week. She lived in the bathroom. Wicked indigestion and nausea. Yeah, ya think? Bless her heart. So I sing the praises of B12 shots. She had no idea they help with indigestion. Well they don’t really- but the truckloads of meds you take for the indigestion inhibit the absorption of b12, so extra helped me feel better. At which point nurse extraordinaire shooes me out the door before she has to give everyone b12 shots...but there could be worse things. Bless her heart.

A Pain in the Arse. These Hips don't lie.

A few months ago my lower back and right hip started hurting. I know radiation effects can take some time to show up, so I wasn't shocked. Annoyed. Put out. Hurting. But not surprised by the latest pain in my ass. Literally. See kids- that's how you do it.

After Phillip was born, I had sciatica. It sucked. The zinging shooting pain.  I love to walk. Soon enough I couldn't. I iced, I stretched, I lotioned, I saw a chiropractor, tried ultrasound. The physical therapist told me that Phillip was a big boy and I probably would only find relief when he started walking. He was right. After I had Kiera- I took precautions and at the first stinging twinges, I would ice and stretch. By the time I had Lily, I had successfully avoided sciatica again, trading it for intermittent plantar fasciitis. Mostly weight related. As my weight crept up with the steroids and comfort eating, so did the cramps and nerve pain in my foot.

The new pain in my back felt like sciatica, but not quite the right spot. I hoped it was sciatica. I did what I thought would help. Day by day, it got worse. I remember the first time I made it half way around the block with Dobby and it was hurting so bad, but you know- sciatica- it wasn't going to kill me. I just needed to stretch. Ice. Sit for a minute. I sat upstairs ugly crying out of frustration. Pretty soon, I was a one woman sob show for Team Mallory. Phil wanted to call the on call nurse. Nah- It's ok. We'll talk about it the next appointment. Me, secretly hoping like most symptoms do- it would resolve by then. It did not.

Does this Lazy Boy make me look fat?

My onc shook her head, it's probably not sciatica. Lets order a scan. So we scanned. It could be this, it could be that, it's probably mets. Here's the deal, I couldn't remember which hip was irradiated. Gasp, be appalled- think it's careless. I forgot to log the fricking brain surgery on one of my last scans. And that was a big deal- I assure you I did not forget having brain surgery.  Phil said look for the tattoo the techs do it to mark where you had radiation.. Fuck, there are tattoos on both sides,  I told them to do an elephant. I looked through my records. It's not that these details aren't important- I have just collected so many of them- for multiple people. And I'm a bit tired. The pain was prohibiting sleep and walking. The pain meds I got were no better than ibuprofen- so I started taking a lot of ibuprofen. Looking through my records meant a day of trying to organize a bin that I've been tossing all of our records into.  The only relief came when Phil got me a little blue lazy boy.

Then it started getting worse again. I couldn't focus. I didn't want to leave the house.  was maxing out hospital size doses of ibuprofen and barely making it to the next. Then there were hurricane warnings. I'll be the first to say- I handle emotional pain much better than physical pain. Probably why I was gifted with 3 girls. Emotional torture times 3. I also do not function well on lack of sleep. I was getting to breaking point. Getting up the stairs was getting tougher. I was just holding out for my next appointment- Phil kept a memo of "demands" on his phone and would plead with me to just call the nurse. I declined. Then one day I had to run an errand, I realized I hadn't been out of the house days and hadn't driven in even longer. As I went to lift my leg to get in the car, it was like lead. It banged against the side of the car. It took three tries. I sat in the car and cried. Piece by Piece. Bit by Bit. I was losing me.

Hurricane Bite Me

After the storm passed and another was on its way-I hadn't slept more than an hour- I felt awful, Lily had an appointment the next day, I was gonna stop in oncology and see if I could up my med game. Instead I spent the night in my pretty blue chair and sobbed. I had taken to spending nights reading or watching tv. Phil was sleeping with earplugs and a mask and I wasn't the only one sporting circles under my eyes. I heard Phil getting ready for work, I don't ask him to stay home unless it's bad, I was going to ask him to stay. He took one look at me and asked if I wanted him to stay. Not need. want. Yes. He was supposed to fly and I still worry all these years and I didn't want to worry and I just wanted to sleep. So he tucked me in, and took care of the day. He even brought me home good meds. Good meds that took the edge off and I could sleep.

The next chemo and appointment, we went over everything. Phil usually goes because I put on a brave face. He's my big ol tattletale. I don't like taking heavy duty meds. They are addictive, they cause side effects, they can be very tough on your organs. My onc let me know that cancer pain is very different. The dose I was taking for pain was miniscule to what many patients take around the clock.  I think part of it is feeling that being reliant on pain meds in another step in the progression and emotionally another blow. BUT living in pain is not a good quality of life- so there we were. I also wanted to go back to the PT place closer to us. They actually called the next day and got me in that week. And an appointment to meet with the radiation onc.

My favorite.

I was sleeping better. PT offered definite relief and I started easing back my dose of ibuprofen. Today Phil was lucky enough to have the day off and we had another date at Tripler for my every 9 week ECHO(my heart is chugging right along) and a meeting with the radiation oncologist. As Phil looked for parking, the rad onc showed me the images. Confirming the radiation dose was in fact on the right side, the same side that's been getting worse and that throwing more radiation at it would probably not help. Which I had kinda already suspected. This is cancering. It's more of an art than a science on all ends. I had him print out some pictures so I could show Phil.  I know he just wants to help fix it, I know me being in pain sucks for everyone. I know so many who live with chronic pain- and there are so many you would never know because they just get on with it. Others let you know every second of every day they are in pain. I am somewhere in the middle and do NOT want to be the latter. I tend to hole up when things get rough because why make anyone else suffer. Except my family- they are stuck with me.

Phil spent some time processing and I could tell he thinks I am hiding something from him. I wish I were. I think I just have more experience in this bullshit. And this bullshit is bullshit. Essentially mutants like me are sensitive to radiation. They have not cracked the code on the details- essentially p53 helps fix DNA damage, our p53 is broken, radiation causes DNA damage- we can't fix it. BUT there is radiation all around us- yes big blazing ball called the sun, rocks, and bananas. Not all of it is bad and after all we are built to deal with it.  Obviously our bodies can fix some damage- otherwise every time we would step out in the sun, we'd become one giant tumor. So the intensity and location matters. I had a very low dose on my spine and hip. So logics like my BFF say- ok- a little didn't work, throw some more at it. At the bad points, I had about 8 Grays(gray is the measure of radiation absorbed in mass), most cancer therapy radiation is 46-60 Grays given in 1-2 Gray doses. An abdominal X-ray is about .0007Grays. Around 10 grays is when the dose starts to get lethal in one shot. You'd have to eat 10 million bananas to get a lethal dose of radiation and if you can eat 10 million bananas in any sort of time, you have bigger issues. The other thing is radiation likes to marinate. You know how you spend an afternoon in the sun, then later you feel your skin getting warmer and warmer...

Does this CT make me look fat? bahahahaha-radiation field. 

So we left with what I kinda knew. Radiation was a bust- may or may not have made things worse- it was worth a shot. My team kinda lets me call the shots. I call the shots based on quality of life. I was supposed to be on an anti hormonal medication called an aromatase inhibitor years ago. I tried it- it was not fun. Since my breast cancer expresses 3 different hormones- the idea is to take away the ones it feeds off of. We started with the chemical hysterectomy/oophorectomy. Then had to go surgical. So now this med will hopefully mop up extra bits and pieces. Side effects- aches, depression, night sweats, hot flashes, general menopausey kinda stuff- which I've had some experience with after the surgery. We are still on same game plan- keep the cancer as stunted as possible while having a decent quality of life. I've been very lucky. I've been on some sort of chemo for 5 years now and there are developments that are easier on the system. I've pulled back some more. I'm focusing on art therapy with the others. I'm hoping it will cool off soon and as Kiera says- stick a pumpkin up my butt and call me spooky. I've got meds for that now-so here's to happy haunting for awhile.

Work, Working, Working out, Working it out.

Holy hell summer is over. Almost. 2 of 4 monkeys are in middle school. We are back to kids in 3 schools instead of 4.

Bella started 7th grade. After a summer of luxuriating on the couch to many delights of vines- video montage stupidity and sometimes hilarity for those(like me) not in the know- Bella could use some structure again. She did do band over the summer and I've failed at providing much more than that. The deal was- pick up her flipping room and she could paint her wall. Well finally last week, under Kiera's OCD supervision- they made it happen. She was given free reign- added some design and quite a few speckles of paint to the carpet. The carpet matches her in age, I wasn't too bothered. It's seen chemo med vomit, too high g-tube setting vomit regular vomit, and many other fluids both human and canine. She needed something of hers in a joint space. Ah. Parenting. It can be work, you just have decide at which end you want to put the work in.

Lily spent the first part of summer going to cancer camp then participating in the Leadership program at school. Despite having the makings of a GREAT leader- they get to wear purple shirts- enuf said. Leadership is kinda like what we know as student council. sort of.  She then had her MRI and jetted off the next morning to Cali to spend some quality time with her Aunt, Uncle, and Cousins. Bonus time was spent with Grandma and Grandpa Allen and Great Grandparents Bourne! When she wasn't reading and playing with the cousins, she got to explore all the culinary delights of the mainland. I told her to send pics- pics of food I got! It was so nice to facetime her and get to see the cousins. She had great experiences learning about her aunt and uncle's work- even getting a spin in a flight simulator! She got home and it's right back to routine- she's excited to catch up with friends, Leadership and is really helpful around the house. We have a couple more scans to look at some spots. Of course I am nervous- we are at her 10 year survivorship point- but I also know that this is WHY we scan- it could be nothing it could be something we can deal with. We won't know either if we don't check it out. Ah Parenting, it'll work out. Working on being positive and know we will handle whatever comes our way.

Kiera loves summer and to wear regular clothes. She jumped into a lot of activities at the beginning of summer- hiking, beach days, jumping off of rocks and waterfalls. Many details of these excursions, I did not know until later and was glad to have her in one piece excitedly telling me about them. She worked a lot at i-trampoline and has been great about putting money away, at Starbucks. Seriously, she has a plan, she works hard and did all the IB summer homework. Phil and I can both attest- we NEVER did that! After her back injury and ankle, she's shied away from dance. She misses it more than she says- every art piece features a dancer. Her community service project is a dance club, the dance is strong with her and I hope she finds a way to nurture it on her terms. I see so much of myself in her. It's bittersweet. I'm so proud and want to save her from so much all at the same time. Ah parenting, she's working and finding what's worth the work.

Phillip. The man-child. I wish he knew how proud of him we are so he wouldn't find every question to be an attack. Ah, parenting. It is just plain work. He is working at Safeway, promoted to cashier. Switching to UH Manoa this fall for more math/physics/whatever classes. Phil and I have many discussions about how to approach this phase of family and life. He is pragmatic, knows the man-child needs independence. I do too. There's a whole year that is a blur and huge chunks of others. He's been a great kid. He will do great things. He is a good human. He cares deeply. He's gifted in music. He's 18 (yeah parents of 18 year old hear me!) I personally am happy to have him here but do not want to be nanny, chef, maid to a man-child. And man-child has my number. So we invest time and thought and energy into figuring this road out, knowing we will find what works for us in our strange mix of normal under abnormal circumstances. I am trusting the foundation, remembering course correction is not failure but a way forward. I hug him whenever I can, I tell him I am proud of him and where I am coming from. Where his dad is coming from. I go with him to his scans yet make him fill out the paperwork despite every fiber in me wanting to just do it for times sake. It's just nice to be mutual support. And the good news is that everything is stable. Nothing to look into right now. That works.

Phil. commander. Best Friend. Outstanding Dad. He works. a lot. I am so proud of the person and leader he is.  He keeps reciting the need to remain "relevant".  Despite my advice on relevance being relevant and that just because he's only doing 2 jobs instead of 3 in the air force, 3 could be family. I understand the fear- after 5 years of wondering healthwise, friends come, and go, and go. For the short while til they find job 3- trust me it wont be long. He arrives home asking why women are so mean to each other in the work place- cue any variation of our female offspring bickering....Dude when you find that out- we will be set. My very best women friends have all been the kind who help raise each other up. They make me want to be better because they are supportive. I shut down, especially now with the petty bullshit. There are certain social constructs that we fight for over and over and there are just as many that oppose them over and over.  We work hard at being the best we can be, we work out one problem at a time and put a helluva lot of faith in it all working out. it might just surprise us.

So, Kiera comes home from work the other night, tears brimming.
I am resigning and I don't want to talk about it. 

Phil and I had been rather emotionally discussing the other childrens and other partnership type things as we closed up the house- I could tell he wanted to yank her down and demand an explanation. I just shook my head. Give her a minute to process and get settled.

I walk into her room, computer perched on her lap.
Funny- they tell you how to apply for a job but there isn't anything about resigning.

Perhaps if you tell me what happened, I can help. 

Long story short- another employee bounced a golf ball off her head. No she does not work at a golf course. He did apologize in a snarky- dude I'm so proud I schwacked you in the head with my mad skills- way. She went to the manager and asked to leave early. Like her mom, she needs to process.

I let her know under no circumstances is someone chucking a hard ball at her head ok- that she could have called the police. The only thing maybe to be done differently would have been to talk to her manager right then. Part of me thought; he probably likes her. WHAT THE FUCK? That. That. That is why we shouldn't spew all of our thoughts and all thoughts aren't gospel. NOT OK, Under any circumstances.

I just wanted to get away. If they look at the video they will see it all. 

And I got it. That environment was not safe. She did not trust management enough to discuss it then. She resigned without naming names but because of unacceptable work conditions and inappropriate acts by a fellow employee. I told Phil and and his eyes got big- "He DIDN'T..."   "She wasn't.." words drifting.

No bud. You have 3 daughters. We can teach them all the tools in the book and shit can still happen. It will happen. We also have to give them the tools to deal. Before, during, after. And hope the tools never need to be used. Right now, we are mid tool dispensing but she's got the basics and I hate that. She's doing the right thing. He makes a point to tell her eye to eye- under no circumstances was that employee's behavior ok. She wasn't alone, we were there every step if she wanted or needed us.

She went in the next day and had to explain. The manager checked the video then commented how Kiera wasn't lying, it was all on the video. Well no shit sherlock. Way to work out that mystery. First the doubt, Kiera offended her integrity had been questioned. The first reaction should be benefit of doubt not just doubt. And of course the other employees were bustling about the negative comments already on social media.

And here's where we are still failing. She felt bad because he got fired. Phil corrected her- he got himself fired. As for the other employees, I'm sure many of them have their own tales to tell- but his girlfriend who was fired a few months ago probably shouldn't be throwing social media shade and regardless- unfollow, unfriend, dislike ,block. Not our kinda people. This friendship is not gonna work out.

I look at the normals we face. I hate that something like this is categorized as "normal" and that we are still working it out. But this is life, the good, the bad, the work. Sometimes it works, Sometimes WE have to work it out.

Just Exploring Every Possibility

When I was little, we'd head out to visit the grandmas. They lived in Toledo, off Willys Parkway. The exit marked by the huge JEEP plant complete with tall smokestacks bearing the letters OVERLAND.
In high school, I dated a guy who went to Overland High School, I always thought of that exit. JEEP was a big deal, for the community for the world. My grandfather drove the generals around in Jeeps during the War. That exit always struck me as a little piece of history.

You'd turn left onto Berdan, go under the I-75 overpass and head down the tree lined Willys Parkway until you hit Marcos Pizza and the Library off of Sylvania. We visited both quite a bunch during my childhood in Ohio. We even stopped for a potty break in 2012 when I took the kids on a tour of where the grandparents grew up.

As my brother Bob and I got older, we knew neither one of us would be able to afford a car. The summer yard/kool-ade sales were just not cutting it. We decided that although we could not agree on anything, ever, we would but our first car together. He could pick the car, but I got to pick the color. He decided it would be a JEEP. I picked blue. That partnership dissolved as the giant tumor in his head took over.

My parents got him a beater to drive around with what funds they could scrape together despite hospital bills, lost wages from caring for a sick kid and well, life. I refused to drive with him. He had a flipping brain tumor. I don't even know what happened to it- the car not the tumor, I know what happened to the tumor. I was a teen and really pretty involved in attempts at normal. Even I knew tumors weren't normal.

When my turn to drive came. I learned on dad's van. Mom's Accord was stick shift and I just couldn't master it. I would drive my dad to the airport on travel weeks in exchange for use of the van. I was responsible for gas. Eventually dad upgraded me to my own 198o something accord. It was oldish, it had quirks, but ran and was generally reliable. And it was mine. I almost crashed it once- a story Phil loves to tell- in a time where I was 17, invincible and just trying to cope with death around me.

When dad died, I got college tuition and a 1992 Saturn. I got to pick the color. It was blue. That little car ran back and forth between Boulder and C.Springs more times than I can count- in every variation of weather.  I was a bit of a speed demon, sat through driving school to remove points for insurance purposes and paid hefty sums in speeding tickets. When Kiera came home with her first speeding ticket last month- I shrugged- pay it or go to court- your choice. She just wanted to pay it- worked some extra hours at work and based on my ride with her last night- the price was not quite high enough. I issued understanding and warnings. The choices are hers. May the odds be in her favor.

She has a plan. She went and took the driver's test the first day she could, she took driver's ed, she got her probationary license and then her full license when she turned 17. Phillip got his license just so he would have one before her. He was interested in driving for freedom, he was not interested in the family car olympics.

College started for Phillip last year, we thought he should stay near. We are in a time of Just Exploring Every Possibility, while managing health that is relatively quite(ish). Phil and I reminisce how we could not wait to get out and drive- rides with parents, were a last resort.  I would give Phillip rides every so often. He didn't seem bothered.  Kiera got car usage because she transported the littles to school and activities. He tried the bus. It was a fairly epic failure. He worked out a carpool with friends, schedules change. He tried the college shuttle(they have one of those!) but it's reliability was not great. Especially when you call 15 minutes before you need it. He tried biking it. Great for physical workout, but bike maintenance became a limiting factor. Yes we took this opportunity to talk about the expense of maintaining vehicles as he started looking for a car. Kiera gave up looking for a car when she realized she wanted a ticket off this island for college- a car would be an added hassle. The deal is - you buy it, you register it, and take care of everything.  Just Explore Every Possibility.

One night, he asks if he can buy a car. Not either of the 2 he's been exploring. I said standard requirements are still in place.
Boy child:Can I write a check?
Sure, DO you HAVE checks?
 No.
Well that's kinda a problem. You will need to figure out the best way to transfer the money. Do not forget about registration and insurance and gas.
Yeah yeah mom I got it. Can I use the car to go get it tomorrow?
Would you like me to go with you?
No, I got it. How will you get 2 cars home? Ryan's going with me.
Allright. Good luck. Make sure you check everything and everything works. May the force be with you.

Somewhere around noon, he knocks on the door with the biggest grin. The girls and I pile in his brand new 2009 JEEP Laredo. The interior is filthy but in good condition, everything seems to be in decent order except the air conditioning. He says he likes to ride with the windows down. I take the crew to Starbucks drive through to celebrate. I have no idea how this will play out but I'm very proud of this step. I also like that Laredo is the name of the middle school where Phil and I met. The road may be bumpy, but sometimes you just gotta jump in and explore. Anything's Possible.

So Bella and I are at Ross, Looking for new curtains fo her side of the room, and this. this calls to me. A sign. A  sale. whatever. A possibility. We are never further from home than we think we are. 

Survival of the Yeah-buts, Yeah-but holes and Relevance.

Age 12- the super nasty precursor to the teen years. They figure as a parent, you have it figured out by now, how to adapt to your child. Don't know who they are, but they suck.

Survival of the fittest is NOT THE CROSSFIT WINNER. Survival of the fittest has to do with an organism's ability to adapt.  Ironically, for our family and many other families like ours- we are chronically trying to learn how to adapt and live with cancer.

The preteen years- where they test the bounds of reasoning and arguing. You watch one child push another out of the way. Hey- watch it!   It was an accident.

It is not an accident because you got caught. Yeah-But....

You know where yeah- buts live?

resigned.....yeah-but holes.

The littles laugh hysterically. You said but hole! And that is why just a few months ago, the youngest thought she was hysterical- she would randomly yell penis. Until it got a reaction. It did not. Because well we are inappropriate like that in the yeah but hole. The deal is to know your audience, know the boundaries and for the love of all the yeah-buts do not embarrass in public.

We struggled with Bella this year, helping her find her place, her way, her. Phil consistently reminded me, we've done this before with each child. Yeah-but each child is their own being, we have to adapt our parenting to their Wiley ways. I am tired. I am tired of adapting, but their survival depends on me, on us. I try the other tactics that worked with the others. Not a shred of improvement. Like even DURING the process. We've always been pretty good at creative discipline- punishment fitting the crime in unique ways. I have met my match in the stubborn department. Well played Karma, well played.

Bella has a reason for everything. She is so smart. She does not know when to shut up and color. I assign her random tasks, Phil looks confused- like How in the f#@! does this help us- well IF she does it, it keeps her busy. Things like dismantling light up cups to replace batteries, only I have no intention of replacing batteries, those bad boys are going to good will...but a half an hour later, she's broken 2 cups and found a 3rd to be rusted through. No loss on my end. Explore, play, figure it out. Learn. We tried Tinker boxes- monthly subscriptions of activities- the problem is, she'd just do it, never look at instructions- but she learns through destructions.....keeping this in mind.

When Kiera was little, Phil struggled to find common ground. As a military brat- he felt parent-child relationships went a certain way. And that's lesson 1 in parenting/life- rarely does anything go the way we envision it. Somewhere after the nasty 12 year point- they found they had the same sense of humor. Kiera would usually talk at dinner, (breakfast and lunch being her favorite meals) and all of a sudden they would be laughing through tears at something none of us got in the slightest. This was also around the time I got perma-cancer. Bella found attention through being quirky in the most inappropriate ways, Kiera took on the little mama role.

For many years between when Bob and Dad died and hopping back in the cancer saddle, I felt the urgency. Because you just don't know if or when. Or what. Or why. The choice is: learn to live despite the gaping, burning heartache and threatening clouds or sit miserably waiting. My dad and brother died in relatively short order. There was much cancering in my family, my cousin dealt with it for years. Others had "littler" cancers, pretty regularly. I learned to adapt. For me, cancer mean swift end, not prolonged managing. I learned To live in the moment, to find the beauty whenever I could and to help others. Fill my karma punch card if you will. Leave an impression as a friend, as a wife, as a mother. When the kids were younger, it was so hard, but easier to justify. This was the biggest thing on my bucket list- being mom. I cooked, I cleaned, I sewed, I did social clubs, redecorated, saved, the whole shebang. When a friend was in need- I jumped to help. karma punch card. For many reasons. I knew the lonely pain and despair of loss. Friends don't let friends go through that alone. Being a military wife gave me a different opportunity on different levels. A group who understood the urgency of setting up a network and the heartache of goodbyes.

I've said since the beginning- accept help when you can, because when you really need it, it may not be there. I said often, wait till I really need it. I've needed.   Go to social events, or you will be forgotten. I stopped going.  It happens. Reach out to others. If you've gotten this far, thank you. You are one of my tribe. I know you are there and even if we have chatted recently- send me a message however we usually chat- all it has to say is " yeah but holes". I tell myself Do not get bitter. When others who have more, get more. When the days are hard and others need more of you. At least if they need you, you are still relevant, right?

Phil came home from work, questioning his relevance. Oh bud- we are all replaceable. Our hearts are not. Our memories are not. But we can build on them. He's worked his ass off despite a wife with stage IV cancer, 4 mini mutants, and well life- to make sure we have a home and healthcare. And usually he gets shit for it on my end, because I miss him, I miss feeling good, I miss the normalish life. This is the normalish life.  He could have retired this year. But he is making sure all the bases are covered. He too wants to fix, help, be his best and leave the world better than he had it because it's hard-wired in him as a decent human. Our adaptation to the challenges may make them appear easier. Just as the cancer patient who dances through chemo and is beautiful despite being bald is revered. Sometimes we dance slower, there are days that even the best make-up can't cover the wear and tear BUT if adapt to the way it is, not the way you thought it could be- you could decorate the shit out of that yeah-but hole!