Monday, December 18, 2017

Eye on the Ball

This year will be the 13th year we've lived in Hawaii. This is the longest Phil or I have officially lived anywhere. I open the windows when the weather is cool in the fall and the kids say it smells like Christmas. Hawaii Christmas smells much much different than my Ohio and Colorado Christmas memories of pine, snow, and spice. Their Christmas is a salty floral warmth.

With the holiday season, comes many events. Every year, like most do- we have to pick and choose. When Phil was at the Academy- we went to several balls, dining outs or ins- oh hell I still can't get those straight. Cancer took over most of our lives, but the military is also a huge part of our family. 
Service Academy Something or Other- 1995.

I had been introduced to the military formal one winter with Phil's parents, he comes from quite the military family. Both sides. For me, my dad and grandfathers were in the military- of course most of their lives was war time and what I remember most was how to make a bed, fold towels and scrub a toilet- dad would tell a story here and there but mostly those cleaning techniques and love of Air Force football from his days in the Air Force were what he handed down.
well that feels natural.
USAFA Ring Dance 1998.

USAFA Grad Banquet 1998

I don't like dressing up. The expense, the time it takes, the airs. It's taken me 20 some odd years to realize- it doesn't matter. There is significance and importance to formal events. We've had some amazing times with friends over the years. Sometimes it is nice to dress up. Sometimes it is a royal pain in the arse. Sometimes you just throw on the dress that barely covers your nursing tatas and hope for the best.
UPT Grad Banquet-I think 2000?
Langley- Hughes Trophy Banquet 2003

 Every year there is the HING ball- Hawaii National Guard. Between kid activities, squadron activities and life, we never made it to the HING ball. We have been to several HIANG- HI Air National Guard formals- and well if I dress up once a year that's pretty good for me! This year, since Phil is Squadron Commander of the 169th, we agreed it would be good to go.
HIANG Dining Out. or In. who knows. 2015

Generally I stress about what to wear- the pressure is quasi-debilitating. There is something to be said for going through chemo side effects like hair loss and massive weight gain to put a lot of it in perspective. The point is to look nice- I had a dress that was comfortable and appropriate. I've never subscribed to the only wear it once thing. So I collected some different bling to dress it up and sparkly sandals(love this about Hawaii) because well heels are just not an option right now. I've learned over time- I love shoes and jewelry, I just don't care to wear them.
a good sign- the teachings of Buddha in the hotel room. 

We knew it was a chemo week, so Phil got a room nearby the Convention Center where the ball was. He is so sweet- he promised if I just wanted to sit in the room and rest- it was ok. I packed some snacks and wine- I think I was looking forward to getting out of the house more than anything and just not rushing to get ready or have a dog and kids vying for my attention. We get there when we get there. I could leave when I got tired.  And we were together.

These events can be very overwhelming. We used to go over social rosters on the way to events, hoping to remember everyone's names. Now I go with the approach, just be friendly. That's the only detail that matters. And drink wine. That helps too. Each event has it's own personality, I was looking forward to the Hawaiian style formal. This would be our first formal in a leadership position. It was different, but I found it to be a little more subdued. I sat and appreciated the myriad of dresses, shoes and genuinely appreciated the glam effort others put in. This is for Irina, who wanted all the details.

Formal pictures were set up outside the ballroom, where an hour prior to seating thousands gathered for drinks and schmoozing. We walked from the hotel and missed most of the social hour because well I am not very fast. Ok we missed all the social hour. I wish it were for a scandalous reason- but the truth is it was nice to just leisurely get ready. As we arrived, Phil procured drinks and I tried to procure a spot for photos. That was when seating began- so we detoured into the hall greeting friends and acquaintances along the way. Then the hall went dark.
I always keep our name cards tucked in a program. 

Many times at formal events, like the opera- lights will dim to gently scoot you towards your seats. This was a full blackout. After a couple minutes, generators kicked in and the hall was dimly lit. We found our way to the table. We all kinda laughed about the power- knowing those organizing the event were not amused. Apparently the power was out on the entire block. The entertainment- local band Kapena, packed up and left. The photos shut down. Anything requiring electricity was a no go. Not ideal for a hungry room of over a thousand. So a very good decision was made- the food was ready and they started bringing it out. This is my kinda event. Normally you have the presentation of the colors, speeches, toasts before the food comes out. I always worry my stomach will rumble crazy loud during the moment of silence when they present the POW table, also known as the Fallen Comrade table or Missing Man Table. This might be one of the most significant parts of these events for me- a table intricately set to remind us of those who are unable to be here with us.

The rest of the guests are at tables for 8, the centerpieces a beautiful mix of local red ginger, birds of paradise and greenery. Each place setting has a program, name card and festive shot glass with local chocolate. Salad was served first, with a coconut curry pineapple dressing, followed by a main of with beef or fish. Both were excellent. Dessert was chocolate cake or cheesecake. Shortly after dinner, the lights came on and the official program began. Governor Ige gave a short speech expressing his gratitude for the service members before he had to jet to another scheduled event- which probably had electricity. Awards were given, a special dance was performed by leadership couples and artwork was presented by local painter  Brook Kapukuniahi Parker.  A Hawaiian artist and historian, Brook dedicates his energy and talents to bringing to life the Hawaiian ancestors and the beauty of Hawaii through art. The painting presented represented all the Hawaiian warriors over time from Kamehameha to modern air power and was the perfect piece to represent the occasion. After the presentations, we visited awhile- catching up with friends in different units and managed a quick picture. All in all it was a ball. We did not dance- because well Phil is afraid I might break- even though I still have to remind him to clip his walking pace a bit. I came away without blisters or back aches and my wrists were only slightly green from the glitzy bracelets of inauthentic quality. Yet none of it compares to being on the arm of the handsome man I adore.

2017 HING Ball. 

Thursday, December 14, 2017

stable ·ish

Short and the Long of it... I NEED to not do scans before Christmas. 

Scanxiety- the stress associated with routine cancer scans.

It's real- it's bad. The scanxiety. You can't logic or busy your way out of it. It just is. It is cumulative and hard and you do the best you can to get through without driving everyone around you completely bonkers. 

Phil finished up his not 1, but 2 online Air War College Courses. breathe.  That lightened his load a bit. sts. sunday night-So when do you want to head into chemo?  

Second left after never, buuuut since it's keeping me alive- let's just do it for shits n giggles. 

Didn't we just DO chemo- isn't it next week?

Actually- this is week 4- the new timeframe we are trying since the fatigue is getting bad and my platelets are not bouncing back. Not crawling back. They are just leisurely sprawled, not doing a lot but they are getting tired and I could use some fresh ones. Especially since everyone is sick with something. 
sexy PET scan bathroom selfie. 

When  I called to get my PET scan results- I interpreted visceral disease stable, we are watching 2 spots- one on my pelvis, one on my spine. I have an appointment with my onc on the 22nd- so I figured we'd discuss then- start the plan ball rolling for these spots if they are gonna be a problem.

I was hoping for N.E.D.  NO EVIDENCE of DISEASE. 
Go to  Snarky Cancer rocks. 

I would be happy if N.E.A.Ds were met. NO EVIDENCE of ACTIVE DISEASE. 

I got Stable. with 2 spots. Stable is good where I am. It's been 5.5 years that I've been living with Breast cancer.  4 years I have been living with METS- Metastasis. Cancer cells that have journeyed and set up camp in other parts of my body, also called Stage IV(4). The goal is to tuck them in and get them to sleep as long as possible. They used to call it Remission-  complete NED. But we have learned that cancer cells are pretty adept at survival and use some ninja cloaking skills to escape detection and lay low until they can seize an opportunity to attack. 

I run(figuratively- there is no running here unless cookies are burning or something equally as important. ) in many cancer circles. I know many in various stages of cancerdom. I cringe when I see the declaration: cancer free. I have seen the devastation when the cancer comes back. but but but the doctors said it was gone. And that my friends would be called a cure. Each cancer is as individual as the person dealing with it and although some cancers have treatments that work well- there are many many more that don't. Worse yet are the options if the cancer comes back. 

Living la vida mutantville: we often hear- oh good it's a NEW cancer and not metastasis. Because well mets suck. They are terminal. They can be managed for a time and many bounce from treatment to treatment, waiting for the next option, hoping it comes out of the pipeline before this line of defense quits. Having mets, living with cancer is much like being a mutant. A lot of waiting and worrying and seizing the moment among all the unknowns. 

When I started chemo- the decision was hit hard, keep the new drugs in the back pocket. I got 18 months out of one of the hard hitters. I had a complete response, although there were shadows of healing(keeping me just a shade away from NED) the chemo worked at shrinking the mets spots.   Radiation was the best option for the tumors in my brain. There were 3, a bigger one in my cerebellum and 2 in my frontal lobe. The little ones- pretty much disappeared. The bigger one required more radiation and well- didn't like it so much- leading to a bunch of swelling and dead tissue and this year's brain surgery. 

After radiation in 2015, I started Kadcyla- which is immunotherapy with chemo attached to it. It is much more targeted than the first chemos. Think sniper versus grenade.  Prior to starting Kadcyla- I had Progression of Disease - meaning some of the spots I had were waking up AND there were new spots. Cancer is graded on severity and staged. I'm Stage IV since 2013. Probably sooner- we just didn't know.   When I first started chemo- Phillip googled shit. He came to me with a look of terror. What is Stage V? There is no stage V. But again, I had a great response to Kadcyla- shrinking the new spots in my leg bones, hip bones, shoulder bones, adrenal gland and some of the old spots that woke up. The problem was we now had multiple organ systems being attacked. Brain, lungs, bones, adrenal. That is why we scan- it's a dance- catch it early to stay in the lead. 

I also take something called Denosumab(Xgeva) it's a shot- immunotherapy that helps my bones hold on to calcium. When the cancer gets into bones- they get weak- not only is it painful, they are prone to breaking. The Xgeva helps keep them stronger and hopefully prevent fractures. Older people also can take this- usually once or twice a year. I've had a few lifetime's worth of it. We started at every 3 weeks and last year went to every 6 ,weeks after research showed less often dosing did not affect time to progression or see more breaks. 

I finally put on my big girl chemo pants and told Phil we should get an early start in hopes of getting out of there and helping kids with after school stuff. Well I rolled over, he was sleeping, he rolled over, I was sleeping- we ended up "sleeping in". Chemo was packed and we waited 2 hours. The way the blood draw site kept bleeding, did not bode well for the extra week off increasing my platelets. When we finally got back to the bay, my nurse(mid care of a much sicker chemosabe) says- I need to talk to you as she runs back and forth! Well that's not good. 

After discussion and reflection, my team does not like the 2 spots and recommends radiation. You know my gut reaction is NOOOOOOOO. But I take a deep breath and listen. She asks me the standard questions- any fever? no, aches? the usual nothing new Cough? nah(as I am surrounded by people hacking up lungs- my offspring included). My onc wanders over. She makes her case. She wants me to think about it. What about the Li-Fraumeni- remember the angry brain spot? Yes, that is a concern, but broken pelvis and spine and spreading cancer are a circling shark. Well GDMFCSSOB. Since the rest of the areas are quiet and responding to Kadcyla- the best option to treat the bone spots is radiation. Shit the ball is rolling. 

My nurse is on the phone with radiation oncology trying to get me an appointment to talk with the rad onc. Yep she's asymptomatic, she's one of our weird ones. Flashback to brain decisions. Ugh. radiation. Ugh. Cancer sucks. Ugh. It could be worse. Ugh. She tells us to think on it, rad onc will call. Ball moving faster. My phone rings- it's the nurse at school- Kiera isn't feeling well- crap- she has to sign herself out- who knows how long we will be. 

SO I finish up chemo, make it to the car and have my meltdown. Phil says- you don't want to do radiation. You don't have to.     I wish it were that simple.  I kinda like this living thing. Even though it's hard and emotional.  I mean the kids- they fight like crazy- we are all still trying to process the last round.  Ugh I don't want to tell them- Kiera is asleep on the couch when we get home. Phil changes and is back out the door to get Bella- The tears keep falling. We promised the kids we wouldn't hide stuff from them- mostly because I have shit for a poker face. I make Kiera and I some tea. I tell her, she hugs me- I say eww your sick, she laughs. Lily gets home. She is also a snotty coughing mess. She struggles enough on chemo weeks. She and Kiera have an audition. Telling Kiera ironically would help her focus- I can't tell Lily yet, it would completely throw her off. It's bad enough both have to audition sick. Next time I turn around, Kiera is laying by the front door asleep with Dobby. This fucking sucks. But it could be worse. 

When they leave, I tell Phillip who is just getting back from work. his shoulders sag. This fucking sucks. But it could be worse. I tell Lily the next afternoon. Which means she will have some physical manifestation in a day or two(cue finger "contusion") Days pass, I can't remember if I told Bella. She wants to make cookies. I sit and talk with her while her hands are busy. At first tears. Then the red headed anger- why can't we have a Christmas without medical CRAP!  I apologize and promise to try and plan scans better. She says it's ok, all she wants for Christmas is for us to be together and for me to get better. 

So I have pretty much checked out- focusing on the basics and just trying to enjoy the season and keep stress low. Not in a Grinchy way- just a survival do what's important way. Just another dose of perspective. I baked cookies because I wanted to. I got some Christmas cards out, because I love cards. I'm looking forward to Lily's piano recital and Kiera and Bella's holiday Nutcracker show. We meet with radiation oncology on Tuesday next week- Phil has a couple days off around Christmas- I'd really love to take those days and have some fun family time. We will come up with a plan and go from there. So as things go- pretty stable-ish in Mallory land. 

Wednesday, December 6, 2017


How do you not become bitter?

I've known Phil more than half my life. He is my best friend. We've stood by each other at our best. We've helped each other at our worst.

Years ago, I became a fighter pilot's wife. Fortunately I knew that fighter pilot way before he was a pilot- so I saw through much of the shenanigans. It wasn't either of our identity, just a part of a bigger picture. I was never a trophy, nor he- we are partners. The thing with partnership is it isn't always 50/50. Sometimes it's 110/110. Sometimes it's 150/-45. 

Yesterday morning he hugged me. Which is not unusual- he hugs me every morning. But it was one of those hugs.

This year. oh. This year. It was the best of years, It was the worst of years. The best being that I'm still here, I think. Phil always makes me better. He makes me want to be better. We have been through some shit. It is difficult to not be bitter. It is a conscious choice. It is work. Like life, like relationships. It is worth it. Even though sometimes we wonder. 

There is always someone who is going through a rougher time. There is always someone who has it easier. There is a very deserving person, who gets no recognition. There is the slacker who seems to just skate by.

Not only did Phil care for me and the kids during one of the scariest times in our lives, he somehow balanced several jobs and so many other responsibilities. He does not complain. He does it, because he is that good of a person. He has been through hell. He has cards stacked against him repeatedly. He does the work of others, because they cannot be bothered and it needs to get done. He genuinely cares. He sacrifices free time and time with us. He is here when it matters. He is my rock.

Others carve out time for vacations, he makes sure he is at every chemo, every scan. He makes dinner, he does laundry. He takes the kids to appointments when possible. He is not perfect. He works too hard. But he is perfect for us. He loves me, scars and all. Moods and all. Better yet- he seems to really like me. I know I REALLY like him. He makes me laugh. We laugh a lot- even when we fight. I get upset because I want more time with him. I know he does too, but he is making sure everything is taken care of. He takes care of his people. I am so lucky to be his people.

Every year for his birthday, I want to celebrate him. He is as uncomfortable with that as I am with my birthdays. We don't need the big fanfare- but we thrive when the ones we love and respect show us their love. Of course this year, he had Air War College deadlines to meet- so we cleaned up the dishes and he hit the computers. Yes computers- because it takes 2-3 for him to operate efficiently -while fielding texts from work on both his personal phone and work phone. The next night, we rally the kids and have a rare dinner out- celebrating that he finished not 1, but 2 online courses. While being a squadron commander, attached to a flying squadron, dad and husband.

I am quiet lately because it is hard. It is hard to not get bitter. It is hard when dreams seem ever elusive. Planning feels like a set up for disappointment. We both struggle with it. There is Plan A, B, C all with options. There are those who have an abundance of help while we watch so many others struggle. I hate that we are so busy- it is a rare event that we can help others. Yet we continue to work hard, to make it better. We want it to be better for our kids. That is not to say so they don't have to work hard, but so they work better. Not to be better than others, but to be our better selves, to help others be better. Always shooting for our best, always hoping for better. And sometimes before we get there, we just have to BE. So yesterday, in that hug, we just were. It wasn't a vacation- which is direly needed- but it was a respite. For those minutes, everything was better. Because of him.

Lily Kay Monkey

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