Monday, May 18, 2015

No News is Good News

I woke up this morning, tears already running down to my pillow. The sun was just about to come up so I crept to the shower as to allow Phil a few more minutes of rest. I slept in fits of coughing and nerves.  It was yet another morning I woke up tired. In the shower, I prepared for the day. It's pretty much the same, every 3rd Monday. I get up, shower, wake the kids up- put them on autopilot for getting ready for school- Phil grabs a coffee, I fill my hydroflask with ice water and we are out the door. We sit in traffic for an hour- Phil listening to sports radio, me checking Facebook or catching up with my mutant friends. 

Yet this morning there was an added strain of PET scan results. As I took deep breaths in the shower, I was very conscious of my thoughts and careful not to think anything that might jinx today or anger the cancer Gods. When you play in a game with changing rules- superstition can't help but be part of it.  The thought settles just out of reach- dad. My aunt texted my days ago with signs. Mom reminds me daily- it's gonna be ok. Today is the anniversary of my dad's death. It's been 21 years but on this day it still feels fresh, ragged.  The shower washed the tears away. I want to believe this day won't get any sadder. I think momentarily that it's a good omen,  that I have chemo today. No news is good news. Perhaps the news is good. 

I called on Friday and the nurse said they could see the scan but no report. I've learned that looking at PET scans is kinda like looking at a kaleidoscope that's mated with a magic eye picture. So I know better than to ask how it looks. I knew I would have to wait til Monday. Which means restless nights. As much as you tell yourself there is no rhyme or reason, you've done what you can do- you still hope for the best. And then you worry that by hoping for the best you might jinx it, so you prepare for the worst. 

We get into the chemo bay early and the report is not in still. The nurses are calling around to try and find it. Finally a call to the facility where I had it done and they say they faxed the results. I guess my onc wanted the radiologist here to take a look- but after some discussion- apples oranges- basically we just needed the report from the Center that did it. 

Phil runs to get coffee downstairs and meet a friend who was nice enough to make us dinner for this evening. I wonder if it is strange that we travel with a cooler in the trunk for this sort of occurrence. I am grateful for it. While he is gone, one of the nurses is looking at me PET- I wheel my IV pole on over to take a gander. I remind myself of all the times I have looked at scans with my untrained eyes and panicked. She asks where were the main spots of concern last time.  I kinda snickered. There were several. It was my impression that my onc was most concerned about the adrenal spot and the hilar spot which means I should be most concerned about those spots but I remember Phil was especially concerned about the one in my femur. For many reasons- I mean sheer numbers of spots is not good- but multiple organ involvement is no bueno. I went from 2 organ systems being involved(lung and bones) to more than 4- brain, lung, lymph nodes, bone and adrenal. We looked over the scan and shrugged. We needed that report. SO she finally gets them to refax it. 

Phil is back when it arrives, and I am grateful. "Congratulations," she says as she hands me the paper. Last time she said congratulations was over a year ago- and that was really good response. I glance at the first paragraph. "skip to the bottom" she urges.  No. I say. No.  "Jen Mallory only you would look at that report and say no" I give her a high five and she walks away laughing. 

I want to read it- the full report but my eyes are filling up with tears. I can feel Phil trying to be patient and I hand him the report. 

1. Complete resolution of left cerebellar, right hilar, right adrenal gland, and multiple skeletal metastases consistent with therapeutic response

2. NO evidence of loco regional recurrence of breast carcinoma. 
3. NO evidence of visceral or new osseous metastases. 

Those were my No's. No's can be good. No's can be very good. Phil hands me back the report and I read it over and over again. Like a beloved childhood fairytale. The tears come and I let them. I text my mom first because I know this is the one thing I can do today to help her get through the sad. That hopefully some of the sad tears can be replaced by happy tears for awhile. 

So we keep trucking. We keep doing this chemo, Kadcyla as long as it works. Phil wants a guess. I can't say. 8 months maybe 12 till the cancer adapts and grows around it, some ladies have been on it for years.  We just hope. This is the gentle tug of war I play with cancer. For now I have the high ground, again. A strategic game of life.  And today was a good day. 

Friday, May 15, 2015

I had my PET scan on Monday. After a luxuriously relaxing weekend on the Big Island, and by luxuriously I mean all 6 of us together- having fun- playing pool volleyball,  going down the waterslides- laughing. All 6 of us. It was glorious.

It was good to feel normal and try to escape from the cancer cloud. Outwardly, now that I have hair(wow- you don't look sick) we can pretend normal easier. I have to admit- I am not the playful parent. Phil is the fun one.  The timing worked and I felt good. So I played. The kids' reactions made the sore muscles worth it. I learned things like- playing volleyball with a chunk of muscle missing out of your arm can be precarious.  Teaching the kids that volleying can be fun- that we weren't competing against each other- but with each other to keep the ball in the air.  The competitive boy child seemingly confused- but that's not the point of the game! Phil and I laughing - um yeah that's why it's called VOLLEY-ball. jeez.

And for moments I forget that I am a cancer patient. They aren't treating my like I don't feel well or that I am fragile. When my feet cramped,  I tried not to worry that it was an indication of something wrong, but rather a good exercise of muscles. I tried not to think of the looming PET scan instructions- to not over exert yourself prior to the scan. I sometimes suck at following instructions.

I feel pretty good. Chemo weeks are rough. There are aches and a lot of fatigue. So I pretty much write that week off- and by write off I mean- keep plans to essential personnel only. We still run to activities. I just try to rest as much in between as the more tired I get, the achier I get and the brain starts to worry. Instead I envision the chemo attacking the rogue spots and hope that's what the aches are.

The PET scan was pretty much uneventful. They injected me with the radioactive glucose tracer and I slept through the hour waiting period. The scan itself wasn't bad but about halfway through I started feeling anxious despite having a fair amount of anti anxiety meds coursing through my veins. I go in with a plan of things to think about or songs to sing in my head, but generally it's a fight to keep pushing away the what if thoughts and focus on the healing and calm thoughts.  I wish I could sleep through it. Yet I cannot but by the time I get home I'm exhausted and sleep the rest of the day.

So here we are 5 days out- no news is good news- no news is good news. I am hoping that is true. I am just hoping for stable. I just want stable. Because one week out of three being achey and tired isn't too bad. I have hair. There are days where I almost feel normal. Almost. And that is reassuring because I don't always feel sick and I don't look sick- so that has to count for something.

Monday is back to chemo. I have a cold I'm trying to shake.  I can't help but think back to the string of colds I couldn't seem to shake, worrying I overdid it. It doesn't matter it was totally worth it. Hoping for a boring stable kind of weekend. Last weekend seems so far away already. But the school year is wrapping up and I am grateful for the distractions!

Wednesday, May 6, 2015

Wrangling Loss

There are so many kinds of loss. Although we take great measures to prevent loss, it is in fact part of the human experience. We lose keys, we lose money, we lose teeth, we lose our minds, and the worst of all is losing someone we love. But is it the worst?

It's a matter of perspective. Loss is loss. I'm not saying that the loss of a kitten is in the same realm of a mother losing a child- but to that person in that moment- it is, it is loss. Loss can be profound, earth shattering like a lava eruption. It can be cold, swift and ever flowing like a mountain river. It can ebb and flow like the waves of the ocean.  And sometimes it hides and jumps out at you like a sneaky little bastard.

It is May. May is brain tumor awareness month. I say this every May because although it is highly relevant and obvious to me, it may not be to everyone. I also lost both my dad and brother in the month of May, to brain tumors.  My dad's birthday, also May. Anniversaries and birthdays are really hard when you have lost someone you love. BUT you expect these days to be hard, you prepare for it. You plan to call in sick, or be extra busy at work, or to go to dinner with friends- whatever that year's mood may be. My mom and I made a tradition of it. We would take the day off if it was a week day- or days and go up to Rocky Mountain National Park when we felt like being near them. One year we went to New Mexico. Or was it Albuquerque? I don't remember, I just remember it was southwestern-y. Which is funny because just about everything from CO to CA is pretty southwestern-y. But that is the comfortable fuzz of loss- how your mind protects your heart and vice versa. I was also a teen and wanted to pretty much be anywhere but where I was and where I was felt like a great big snuggly blanket of heartache.

Sometimes you just need the companionable presence of someone who understands how your heart has been ripped out, trampled on then scattered around the world to be given back to you at the most inopportune moments. That is the part of loss that often surprises people. It still to this day surprises me. Everyone deals with loss in their own way and of course there is no right or wrong. It is personal, it is individual. There are those who open their scabs for the world to see, over and over and over. Be gentle with them, as they are in a personal hell. Many never make it out. Not everyone can participate in loss for the same amount of time. It's like sprinting vs marathon. To make it out is a choice and it is a hard one. It doesn't mean you forget, it doesn't mean you stop hurting or loving the ones who are gone. It just means you chose to do what has to be done.  You chose to live despite the loss, but never completely without it. There are those who throw themselves into work, charity, life, living for the ones that are not here to do the living.  And there are those who work really hard to be normal when life has given them anything but.

My mom and I had several knock down, drag out fights after my dad died. He was our buffer. We were both dealing in completely different ways and as happens in loss, we scratched at each others wounds just to feel something other than pain of loss and an easy out is anger. It happens. Sometimes when you are mired in pain, it is toughest to see outside of your own loss. You don't WANT to see outside your loss- because it is so uniquely yours. How could anyone else's loss be more profound than that? After many years I have learned to understand her side better as I became a wife and then as a mother. I respect that she ever got out of bed after losing Bob. I respect that she went back to work and she took care of me and my dad. I understand how she could put up with me despite my complete moodiness and my need to luxuriate in the reminders. And that was not easy for her.  I understand how hard it must have been for her to send me off to college, her nest suddenly becoming completely and utterly empty while I took steps to make my own. Yet she kept going. There was no foundation with their names or support group to carry her through. Just sheer will and love of their memories. Love of me.  Because in our hearts we know it would absolutely destroy both Bob and Dad to know how profoundly their loss affected us. Even though many may never know, it is a part of us.

Sometimes in crowds I see someone who reminds me of dad. And that tight grip on my chest almost takes my breath away. Those moments are when one of those pieces of my heart finds it's way home. And you never know when it will happen. Looking at Phillip's hands that remind me so much of Bob's. A book or a store with the name Bob in the title. Or a piece of trash on the side of the road. One man's trash, is another's treasure.

a buffer. 
My dad worked for an industrial floor care company. When we were little, we would go to work with him on weekends to give mom a break. If we were lucky- we could get to ride around on the massive buffers that looked like mini zamboni's. They all had fun names like Wrangler or Colt, Pony or Charger. Usually we sat in the break room and watched cartoons or acted ridiculously and stapled ourselves to things. One year in high school I got to go with him to CU Boulder and watch his schpiel right there in the gym off of Folsom Field. Every now and again during my years studying there would I see one of the machines. Years later that piece was returned when I turned in my cap and gown in the very building. The floor still worn, yet buffed nicely.
Not this floor- but not too far. Get it? "Buffed Nicely"

I haven't seen one of the machines in years. I think the last time was at Tripler during the hell of Lily's treatment and I remember mom saying it was dad reminding me he was looking out for me. So today was an average day, I dropped the girls off and let my mind wander for the 12 minute drive home. I was 3 minutes into the drive and thinking about how loss never goes away and how I wished I was in Colorado this May because I really feel far from Dad and Bob. And I shit you not- I look up and see this sitting on the side of the road.

After pulling over and having a moment- as well as scaring a friend who saw me pull over... I again accepted that the universe works in mysteriously trashy ways and memories can sneak up on you like a broken down buffer stuffed with a toilet seat on a back road to your kids' school. And even though I wrangle the feelings of loss on a daily basis- some days you just have to feel them and then buff them away. 

Sunday, May 3, 2015

Compassion Fatigue- Turning Lemons into Lemonade, Again

We all know that person. That person who always has something tragic going on. Whose life seems to be shrouded in drama. The person always in need of something.

I try to be useful. I try to give. When there isn't money, I give time. Sometimes all I can give is a hug, typed with love from miles and miles away.

I was the kid who took in the stray. Who saw the good in people who were troubled. Who gave people the benefit of the doubt and an ear. I gave more when I could. If there was something needing done- I'd do it.

I am rapidly approaching my 3rd year of living with cancer. I am slightly offended that people sound so surprised as they tell me how good I look.  Hell, before I started chemo- I looked completely normal. I'll admit that I don't get out a lot lately but I seem to be always going. Mostly I limit my interactions because I am a perpetual volunteer and one of the only ways I can prevent myself from volunteering is to keep away from situations where it would be asked of me.

One of the guys at work recently asked Phil if I was coherent anymore. As we laughed about that, tears well up. Because yes I am coherent, well at least I'm functional enough to think I am. But that's the problem with where I'm at, all of that can change and very quickly. Or slowly. You just don't know.

When this began- my diagnosis and journey with cancer- it was not new. I have lost track of the number of cancers I've participated in.  Family, friends, mutants, acquaintances. I am a huge proponent of sharing your journey, letting people know what's going on so that you can get the support you need. I also completely understand why people quietly deal with illness and never let anyone know. I never wanted to be or have my children be a poster child for illness. It's just not in my comfort zone. We try very hard to maintain some semblance of normal despite completely abnormal circumstances.

I have a low tolerance for bullshit. I am tired of inefficiency. I want to make plans but am terrified to take the step. I am in a holding pattern which when I think about it- will be as good as it gets. I will not get better. And this is exhausting. But then there's the part of me that quietly yells from the dark depth- there is ALWAYS a chance. There are new developments in the world of cancer.

We have had some really good support. And there have been times when we have had very little. It ebbs and flows. Sometimes when it rains, it pours. There are times my fridge and freezer are overloaded with generous meals prepared by friends and family. There have also been times the pantry was bare and I tasked the eldest child with figuring out how to order and pay for a pizza with my credit card. Moms have gone out of their way to bring my kids to and from school and activities. And I have asked for help and been ignored. or forgotten.  It happens. I usually figure it's me and my bad communication skills. There are times people try to be helpful and it creates so much stress I just sit and cry. And there are times when the thoughtfulness is so helpful and just perfect that I sit and cry.  I think chemo makes me a little emotional.

I've always said- I don't want to use up the help- I want to save it until I really need it. I never want to be that person who always needs something. I don't want people to look at us and think- oh shit what do they need now?  I've been chastised by friends for not readily accepting every offer as it comes. Yet I worry that people will get tired of the marathon that is us- living cancer.  I used to say- I don't have a lot of money, but I can give time. Now the sands are drifting to the bottom of the hourglass and I am constantly wondering when it will run out. When time will run out, when compassion will run out.

And then I get an email from Alex's Lemonade Stand Foundation. Would we please be their representative family from Hawaii? All we have to do is share our story and put on a lemonade stand in June. Like I said, I have a serious problem with saying no. And I am up at night wondering how I will find the energy and how to make it work with all the other events and obligations. I feel the compassion fatigue. But then I get inspired. The end of the school year activities, the girls voice recital- which is also a benefit for Make A Wish, all sandwiched between chemos. And then I realize sometimes I make things into a much bigger deal than they need to be. The point of ALSF is that every cup counts- every dollar matters. If our story can help inspire others to do a stand or donate- that helps and I know Alex's LSF has funded research that directly affect families with LFS, families like ours. My kids are excitied about being able to set up and run a lemonade stand. Many kids my kids' age are spending time fundraising for trips for baseball, soccer or other activities which for Hawaiians requires major travel expenses.  That is their immediate future, my kids' immediate future is shadowed with healthcare concerns- and so a Lemonade Stand it will be. And I realize that I rely a lot on the compassion of others. And I realize that they may be better at saying no. But I realize that compassion, like love seems to grow exponentially when it is given away.

Lily Kay Monkey

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