Thankfully Burdened and Drained.

Thankful. 

We had a quiet yet very tasty Thanksgiving at home. Phil prepped and cooked everything. It was amazing and so good. I still felt a bit exhausted from appointments the days before. We are kinda in the revolving door phase of appointments- often going in for one, being sent to another and never knowing what fun might be in store. The drain placement was very much planned and I have to admit- I was really really anxious. It was necessary, since we were revolving into pulmonology too often to help my breathing via way of large needle poked into pleural cavity(the spot between lungs and ribs).

Phil and I argue over how many times I've been drained, technical term thoracentesis. Thoracenteses?

At the game with the Bigs. 

It's only half irrelevant since I am now the proud fashion model of a left side drain(indwelling pleural catheter). Every other night, Phil drains it and I have some relief and opportunity to layish for sleeping. And in true Jen fashion, my right pleural cavity got all jealous like and juicy and now we are draining it in office as needed. Being able to drain at home is nice, but not without issues and the placement procedure was so stressful due to my inability to breathe- that I am not jumping at adding another one. yet.

You know it's bad when the bathroom is your "sterile" zone. 

Our first  home drain solo was on the 30th and before Phil's birthday festivities. I've always been the gift that keeps on giving. It went well- despite sterile gloves not fitting and the horrendous rashes I develop from adhesives and dressings- so each change means ripping open something- while trying to keep the general area sterile. Kiera has been an amazing help getting me to appointments and was educated on dressing changes so she's been Phil's left handed right hand help and my comic relief and co christmas decorator. Lily asks repeatedly to watch, she's also been amazing at getting me to rest and giving me much needed hugs and support.

Dos. Not sure dos of what....

I think constantly of my time with my dad and am so sad and grateful for my beautiful children and their gifts. I also hate that our roles have reversed and there are so many things I just can not do.  I do not want to be a burden. I do not want the sick day memories to stick. Phillip and Bella cope differently and are very quiet. I worry. A lot. We have talked a bit about where we are at, what's going on, which is difficult because who flipping knows? So I spent time talking to each of them about the importance of family,  but also having someone else to be their person. Even better is to have people, a tribe- like my mutants. Lily totally grasped this at camp and excels at it. The gingers are quieter, more introverted- covering with some pretty funny shenanigans. They each picked a person or people, then I reached out. It was comforting and excruciating to make these connections. Gratefully our people remind me that these are the honors, not the burdens of loving someone.

Taste testers. 

As for a plan. Here's what I know. We are in what mutants call- Shark closest to the boat phase. I have multiple big sharks circling and we have to try and figure out the biggest threat before another one strikes(Halloween costume make a little more sense now?)

My sharks are the high tumor burden in my lungs, creating the fluid and overall making the ability to breathe rather stressful; big progression in my hip, which puts me at risk for a major break and me not being a good candidate for surgery due to aforementioned shark; a new abdominal node/lesion/tumor that they think is probably a sarcoma- you know just for funsies.

So the docs have been trying to find ways to determine which what is the biggest threat- my lungs decided that first....and now we've submitted genetic tests to see if I have any markers to indicate one chemo might be better than another and I failed at even attempting a biopsy because I can't lay on my back. SO I've gone from saying lets not just thrash and burn, lets be specific to saying- um guys- we gotta do something and quick- I'm drowning and there are sharks. And when there are sharks- Mutants Assemble. I am looking forward to next week being filled by 3 of my favorite sisters being here to attend to the chaos of where we are.

My future will involve icky chemo and we are weighing options and agonizing over "options" while draining all of the love and hugs I can into my family. No one knows what the future holds. A few days ago, a gunman walked onto base and took lives. Every day I am thankful Phil comes home, my children are doing ok, and I am here with them. I reach out when I can, talking on the phone is very difficult with the oxygen, so text and messaging works better for me.

Speaking of oxygen- I have Johnny 5( he's the big air compressor I use at night) and Vader- the lil loud guy who I lug around with me, thankful for the breathing.

"Jenny- I am your BREATHER!" - Trish

Effusions in Plural

ef·fu·sion

/əˈfyo͞oZHən/

Learn to pronounce

noun

1. an instance of giving off something such as a liquid, light, or smell.

   "a massive effusion of poisonous gas"

     Similar: outflow, outpouring, flowing, rush, flood, deluge, torrent, welling

   
   

   • MEDICINE

     an escape of fluid into a body cavity.
   • an act of talking or writing in an unrestrained or heartfelt way.

     "literary effusions"

     Similar:  outburst, outpouring, gush

   
   

LFS. Family. Camp. This was years in the making. An idea. A wish. A dream. 

2019. Trish said. This is it. We are gonna do family camp. 

6 board members became 5. Then 4. Life. LFS. Each of us tackling obstacles, health, business, family. Loss. 

Montana. Camp MAK-A-DREAM. It's a bit expensive to get to, but totally worth it Trish said.

The Journey to Living LFS's First Family Camp began. Me spewing ideas, visions. A year and a half until camp became 6 months away, 6 weeks away, 2 weeks away.

I would wake up at 3am. Unable to breathe. Alternately excited and terrified. So much could go wrong. But we are mutants. We know how to turn bad into a good time. There is strength in numbers. Plural. More than one. 

1 week to go- both girls get colds. I have a cough. I "rest" by organizing and reorganizing what I need for camp. Bella is giddy, checking weather in Montana daily, hoping for snow. 

I am impossibly excited. and nervous. I am excited for the girls to meet others who know this crazy existence. I know how life changing it was for me to find my mutant tribe- and still I did not predict how effusive the impact would be on Lily and Bella in different, yet personal ways. 

After a night of flying, Lily getting airsick, having an adrenal crisis and me failing miserably at finding any fun in it- the clouds cleared as soon as we were greeted at the airport by one of my favorite mutants, Mills- who transports us to one of my effusively happy places. House of Snark and Groot.

 I'll be honest. There are MAJOR gaps in my memory. But I remember how being there makes me feel. The girls(BEE LAAAA) came alive. She and Mills not only share a birthday- but a really inappropriate bizarre sense of humor. Mutants are caretakers by nature, each in their unique way. They are my sistahs. When I am with them, I know things will be hectic but handled. 

We make our way to Camp, sardined with blizzards worth of items and laughter. I am beyond grateful for the energy and efforts of the team. I feel perpetually exhausted but happy. Old friends. New friends.The outpouring of love and hugs takes my breath away.  I assume it's the altitude. 

The families are now MY families. After a day, the energy is hypnotic. This. This is what I wanted. For me. For the girls.  For anyone who felt alone in this genetically mutated life that landed on us by happenstance. SO much laughter. Therapy over art and food and campfires. Getting more from the experience than I could ever give. Adventures like archery (talk about targeting tumors!)and ziplining, draw out even the most antisocial BEEE LAAAs. 

Learning from a carefully crafted team of counselors and professionals familiar with LFS. The kids proffering their veins and blood to help research that promises to make living with LFS easier. Seriously- how awesome is a group who happily will get a poke during CAMP? And the amazing group who did it for us!

I walked up the hill, my lungs burned. As a Colorado girl, this was more than altitude. I couldn't catch my breath. Damn. Damn. Damn. I wanted to hike up the mountain with the group, yet here I could barely make it from cabin to cabin. Lily started hovering. She knew. She said I was breathing funny at night. I think she'd ask me 53 times a night if I was ok. Yeah I'm ok. 

We closed out camp with an amazing talent show, Lily sneakily getting Bella to perform and everyone walked back to their cabins, the pathway lit by lanterns in honor of those we lost. The next morning, a welling hangover. Mutant fun hangover which led to sudden withdrawal. The comfortable fuzziness enveloping us as we prepared for see ya laters. 

Our flight the next morning was obnoxiously early. Lily, forever the planner was not satisfied with my laxidaisical attitude towards the day of flying. We somehow made it through- and I slept most of the flights. Which is not something I do. We arrived in Hawaii and the only thoughts perfusing my brain were a shower and my bed. And to breathe. I was coughing more and the pressure seemed to be increasing. I had thought about bumping my chemo appointment for the next day, but it was looking like I needed to be seen. 

I arranged for the man-child to drive me to clinic after his class. I called clinic to let them know I was kinda having a bit o trouble breathing. The clinic was swamped and I could tell they were feeling out how bad I felt. In the end we agreed I'd page the doc when I got there and I could head down for a chest xray. 

She took one look at me, shook her head and said I was kinda gray. I disagreed and mentioned that although cold, it was sunny in Montana. At that point she started moving fast, she made the jump to pulmonary embolism. I didn't think it was that, but I had flown and honestly I wasn't sure which was worse emboli or toomahs? She personally grabbed my vitals(not great), a wheelchair and off the the ER with me. Phillip just kept shaking his head. This is not how I thought today would go either. After tests and more tests and a couple more tests. We ruled out pulmonary embolism and were leaning towards pleural effusion. 

The pleura line the lungs, sometimes fluid collects there- due to infection or you know, cancer. It causes that whole I can't breathe thing. effusively. After some oxygenation and antianxiety meds, the doc agreed I could go home if I returned the next day to see the pulmonologist. I had to maintain a certain oxygen level while walking around the ER in order to get my pass. This wasn't like I was trying to cheat the system - I kinda like breathing. I knew about pleural effusions from my various cancer support groups. They can be inoccuous or well, noccuous. 

I felt pretty yuck. I kinda just wanted to sleep but then the coughing and the gasping. We found our way back to Tripler the next day and got to introduce a nice young pulmonologist to what happens when Jen is de-oxygenated, stressed and left in a room with little entertainment. Fingerless gloves. And snide comments about how I know all about stuff and stuff, you know cuz grey's Anatomy. Then random quizzes on LFS. Which he said probably really wasn't a cause here, to which I explained- zebra unicorn pegasus theory. We grow weird. Don't assume it is or isn't. Or in this case don't effuse it is or isn't. 

Normally I think I'd be more panicked about a big needle(sorry they use the term CATHETER- less intimidating? and oh yeah despite being asked publicly 53 times if I could possibly be pregnant....no, one needs to have certain parts for that-then suddenly a receptionist holds up a post it with "Pregnant? Yes or No?" ) wt actual eff? 

Anyhoo- the thoracentesis itself was fairly quick and anticlimactic compared to the whole drawn out suffocation act I had going on- so yay. There was fluid, and coughing and more fluid and breathing and a little soreness but mostly breathing. Look away if you don't care to see that Jen's pleural fluid looks just like pee...I think the doc and nurse were taken back that I wanted a pic with my fluid, but I mean people photograph EVERYTHING these days. Effusively. Plurally. 

Getting home, my lung readjusted to having space to do it's thing. There is some fluid in my other lung, and chance that the left side could fill back up but we deal with one step at a time. He removed over 800mL of fluid- sending off multiple containers to see if we are dealing with infection or cancer or what. For now I feel better. I can take a deep breath and look back on the camp experience with a clear mind and full heart and a effusive tribe of superheroes. 

Life, Balance, Onward.

Every few days- I think- I should update the blog. Then life swirls in and we are swooshed past, around, under, over and away from the update I was about to give. 1 step forward, 1.5 steps back- encroaching on previous gains.

So much happened over the summer, some HUGE Mallory milestones. Summers are historically busy for Phil, so we usually take on Home Improvement Mallory Edition. This year was no different. As Kiera geared up to fly the coop, these exercises are lessons and memories wrapped in a bundle. They also give me faith that she has the tools to tackle the obstacles which will inevitably be flung in her path. Yet she planned her dorm room space, pricing items and we spent a lot of time pre-bargain shopping.

I spent my "free" time just getting through daily tasks with help from the girls and squeeze in self care where possible. For me, philanthropy and crafts are self care. So I am trying to catch up on digital scrapbooking, aka "the historical documents" and gearing up for our first Living LFS Family camp- which Lily and Bella will go with me to.


I am impressed and frustrated by how bad my memory is, that I have no idea where so many pictures live or how to combine them in a useful way. So after a mindnumbing few weeks, I just say screw it, pick the next year and try to scrounge up photos. Then shutterfly locks up and customer service says they cannot possibly ascertain what the problem is- have I cleared the cache, turned it on and off....the usuals. So I start researching other digital options, find mixbook and get back to work. So I figured- let's update via photos...and the same problems persist here.

Soooo, Phil fortunately had a conference in Denver the same time I had parent Orientation at University of Denver with Kiera. Emotions were rampant for all of us on different levels. I was reminded again how lucky we are to have family and friends who are pretty much family, everywhere. SO many helping hands with Laundry, transportation, shopping and keeping me sane via big hugs. No offense to any, my favoritest hug was from my dear friend's 1 year old- Ginger Ninja. I am a bit partial to gingers- even blondey ones!

As Phil's conference wrapped up( ask me sometime about the fascinating experiences with Guard Units from West Virginia and Kentucky.... all I have to say on that is :Moonshine and Bourbon)- he looks at me one afternoon in a very rare quiet moment and asks "she's gonna be OK right?"  Yeah, she's gonna be great. So I sit and write her a card, reminding her that things get hard, but they also get good, and great. I am so ridiculously excited for her. I am just sad for how much I'll miss her- but that's so normal- I kinda also love it. I remember the freedom of Freshman year, following such profound loss. The loss this time is mostly mine, but it is worth it because the world is gaining so much more. We have laid a good foundation.

The past years have had some very not so pretty moments. When Kiera was little we often joked about keeping her off the pole, she always had a strange love of hotels and dancing. After a few rough times- she pulled it all together and excelled. Her future may very well contain hotels, but more in a management position as she is very excited to be studying Hospitality Management. Take what you love and make it work for you. Within 48 hours of our leaving, she was hired at Old Navy(great plan for winter clothes and spending money), joined the figure skating club(so much fun) and went to a frat party(boring). She is rooming in a suite with 3 other girls and navigating those waters very tactfully. All that sister experience comes in handy.

Phillip sometimes lacked focus but got where he needed to be. Sometime during Junior year this changed. I've wracked my brain, my faulty memories- was it something I did? Something I didn't do? His star crossed love? The wrestling concussions? Our medically chaotic existence? There is no answer. Calls to my mother in law, friends led to the conclusion that I sometimes get what I ask for- a very "normal" experience in the form of a man-child teen not quite adult. He's been floating. Searching. I wish I could spare him the experiences he seems bound and determined to have. His dad and I discuss constantly new approaches, assign good cop, bad cop. But most of all we love him and have faith he will find his way in his time. He is studying computer programming this semester, paying for courses himself, working at starbucks and working out. To those who understand and have given me hope, thank you. I think in our existence with cancer and LFS, there is often this sense of urgency to live, to accomplish certain things and he reminds me that sometimes we just have to live without the timeline ticking over our heads.

Lily is a Freshman. In HIGH SCHOOL. She is a born leader(aka control freak- yeah I'm talking about you LIL!) She amazes me every day and is bound and determined to have so many incredible experiences and to pick up where Kiera left off in caring for me. Which alternately heals and breaks my heart. She is struggling with anxiety(yep she's my kiddo), so we are working on techniques and ways to get her through scans, and life. She is really looking forward to Living LFS Family Camp and I am so excited for her to be around others who get it!

Bella. Oh dear Bella. An 8th grader. She is a FORCE to be reckoned with. She keeps me laughing with entirely inappropriate humor for her age. I think she definitely channels her Grandpa Connolly with her sense of humor. She upgraded to bass clarinet in band, still plays piano and is Dobby's new sleeping buddy. She loves all things, weird and scary. Panic!At the Disco and Chucky are her current faves.

Phil. Is my Rock. I love him more than anyone or anything. He quietly handed me chocolate(rocky mountain chocolate factory chocolate- the GOOD stuff) tissues and wine as I slowly cut the college umbilical cord. He did say this was a new experience as he was just dropped off at the 'bus stop' for "college". I did remind him that his mom and I did the dropping and it was a looooong tearful drive home. He was allright- yeah?

He drove me to the mountains, where my dad and brother's ashes are. He let me sit and purge all the emotions. I watched lightning and thunder move in, feeling the energy and electricity of it all. Bought the kids random Colorado souvenirs and a huge ol' sage stick to smudge my house with.

Kiera Facetimes me almost daily. I miss her a ton. We are busy. Doc appointments, school, life. Friends here meeting us on short notice for lunch pick me ups(thank you Heidi).  Playing the mix n match chemo game is helping me figure out which side effects are from which med. yay me. Good times.  It could be worse. I felt pretty good in Denver. My joints are doing better, but other cancer aches have increased. I am envisioning this as the herceptin killing off the new growth. The other meds keeping the other stuff stable and well- balance. My memory is crap, I'm super tired but all in all one foot in front of the other. We are man to man defense now instead of zone and although sometimes it's hard and lonely, I am so lucky. Lucky in love. Lucky in friendship. Still grateful for every day. Thank you for being a part of this crazy journey.

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.