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. 

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!

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. 

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.

http://www.alexslemonade.org/campaign/alexs-lemonade-days/hawaii

April Showers

Kiera is my first April baby.  Sometimes I look at her and she takes my breath away. On my ugliest of days, on the days I try to remember what it's like to feel beautiful- I look at her and find it. Despite being told her whole life that she is beautiful, if she knows it, she does not let on.

For her birthday she wanted to go shopping for some new clothes. Shopping is not something I enjoy.  Yet that is precisely the purpose of a gift. We left in the morning and made several stops. Oh to be 14 again. You could not pay me enough to do it again. I remember 14. It hit me with a vengeance one morning. I was 14 when my brother was diagnosed with a brain tumor. That year is clouded with a comfortable blurriness. Girls are mean. I never felt like I could fit in without sacrificing myself and I refused to do that. I would take long walks and spend hours and the phone with the few good friends I had. I always preferred one good buddy to being in the crowd. When you see cancer sucking the life from someone you love- the loneliest place in the world can be a room full of people.

We found Kiera clothes and I truly enjoyed spending this day together, just the two of us.  A quiet lunch. She even helped me grab things for Easter then rushing home to quickly sing happy birthday and send her on her way to work lights for PACK's production of West Side Story.

We currently go from one event to the next. I cannot focus on more than one thing at a time. I could blame chemo, but I think it's just life. I no longer can multitask. I miss it.  The next day we painted eggs. The whole family gathered around the table for an hour. These moments are hard to wrangle. In them is perfection. Messy, stressy and totally perfect. Even better was the next day when my mom suggested the kids do the bunny hop. And they were such good sports as Phil and I laughed hysterically and would call cut and make them do it again. These are the impossibly goofy and fun moments that make us- us. 

The day after Easter, it was back to chemo.  The chemo bay has been very busy. I sense the underlying politics of the system and it's hard. The nurses are wonderful, and very good- but very busy and expected to do too much with a small amount of space.  We waited for hours for an available chair. It gets frustrating. I understand what's going on and sometimes you just have to wait your turn. Every time I offer a comfy chair to someone who might need it more and every time they tell me to stay put. One of the nurses finally explained to me that they try to balance It's also frustrating to know how it works- I know that once I get my blood drawn it will be another 2 hours before the results are in and we can start my infusion.  We met with my oncologist- who is keeping pretty close tabs on me.  I appreciate it, but I don't like it.  We went over my brain MRI results. I never got a call- which in our world- no news is good news. We hedged the bet slightly by having a friend look up the report. Overall it's good- we hoped for stable and we got "improved". The big tumor shrank about half a centimeter. So now we do another PET scan(Probably in May) to see what the rest of the unruly spots are doing. I think my onc suspects Kadcyla is not going to work for long as he already threw the name of another chemo into the ring for me to research.  It's called Ibrance and the trials had such good results they are fast tracking it.  He also sent tumor bits out again- this is the 3rd time(hoping the 3rd time's the charm) for genetic testing. This is is real life personalized medicine in action. It would have been nice to be able to do this 2 years ago and know if and what chemos/etc would have the best chance at working for me. BUT that is not how insurance or the system is set up. So we have to travel down the road and exhaust a few possibilities before we get to try to streamline the process.

Chemo week was also the week of the Variety Show at PACK. That will get an entire post on it's own....It was fun and emotional and really reminded me how 1 person can make a difference- one pebble- lots of ripples kinda thing.

The next event is Bella's birthday. Tomorrow. We celebrated yesterday since Phil is on a 24 hour shift into tomorrow.  She also got to pick out a bike and opened her birthday present from Grandma Connolly- a mermaid tail like Lily's.  She took it for a spin at KoOlina and Lily even let Kiera try hers on.  And although it's busy and I get tired easily- I'm grateful for each of these moments. Each birthday we celebrate, each excuse to go to the beach and enjoy the nearby beauty that day to day operations don't always leave time for.  This week I hope to partake some more with one of my dearest mutant friends who is coming to visit.

Luck of the Irish

Top o the Mornin' to Ya.

Ireland is on my bucket list. A bucket list that I have not formalized because that is bad luck. It's also why I haven't written my book yet- this story is still working itself out. Would like to keep the plot twists to a minimum from here on out. And until my fairy godmother appears with grand plans for a great european tour- I keep on the building suspense part of the story.

I grew up in a good Irish Catholic family. I remember my uncle and his family making the trek to Ireland to find our roots years ago. The funny thing is we are such a melting pot-but yet somehow the Irish part resonates with us.  I think one thing I've learned from this heritage is that luck is what you make it. Certain things are just chalked up to luck. I am a very lucky woman.

Phil often jokes that he is more Irish than me. It is true. I think ancestrally speaking- he has a much clearer link to that island than I do through his Bourne side. I remember the day Phillip was born and the doctor looked from me to Phil and back to the ginger haired cherub we produced. Didn't expect the red hair- he told us. But Mallory sounds like a pretty Irish name. Despite the fact that it isn't really. The Irish blood comes from his mother's side. I've joked with him for years that Mallory means unlucky. And it is probably french in origin, from "malheure" meaning unhappy or unlucky. The Mallory name travelled from France and England to Germany and the US. Some from Ireland.

I am of the Connolly clan. Meaning, valiant, wise. Also more English by way of Irish. My other half is Eberle, French-Canadian and German. I am truly a mutt. My children even more so. I embrace this part of us. I find that mixed babies are the most beautiful and I sincerely hope that the genetic diversity will help them overcome some of the shortcomings. Balance. Luck. But that is where the strength is. I remember my uncle brought us back cards with the Connolly crest on it- I still have mine tucked away- I thought it was interesting that it had 5 seashells on it. That was it. I don't know what I was hoping for- rainbows-lions-shamrocks and scythes- something that felt a little tougher than seashells. Yet if you think about it- shells are homes, they are travelers, they are a hearty bunch.  I looked up the Mallory crest and it had a weird Lion beast on it. And a horse- which I thought was fitting since Phillip means lover of horses. Oh yes the jokes there have been exhausted. And during our most recent discussion as to our familial luck and whether or not it hinges on the name- I found this...

http://www.meaning-of-names.com/german-names/mallory.asp

The meaning of Mallory in German is - War Counselor. And somehow that seems most appropriate of all. Which is good- Germany was already on the list of European bucket list destinations.

Just as in life- where you've been influences who you are but also where you are going. How you look at obstacles can really truly affect whether or not they are surmountable. The shell is shaped and weathered by the sea. If you go through life thinking you are unlucky, bad luck will find you as you will attribute every unfortunate event to that omen. Yet if you approach it from the other direction, as an opportunity to direct change- then new paths open up. Sure there may be roadblocks and you may have to lay some paving down- but just think of those who follow not having to pave their own way. When I travel one of these metaphorical roads, I wonder who was responsible and send out thanks to the universe. Some people call this praying. Some people give thanks to God. But God was working through individuals like you and me- and that is where the beauty is. Simple people with some bad luck that turned a journey into something greater than an anecdote. By sending out thanks to the universe, I have to trust that my grateful energy will go where it is needed most- just as in times of trouble I close my eyes and allow it to be returned. 

So luck may throw some challenges- but when you resign yourself to knowing that your role or strength is in meeting these challenges as a trusted advisor- a war counselor- it takes some of the power away from the unknown and puts it into our hands. It does not make it easy. But as humans we are in the constant search for meaning- and sometimes we have to choose which meaning we would like to believe. My truth is this- my unlucky circumstances have made me the luckiest woman in the world. 

I met my husband when we were children.  Somewhere in all of our losses, we found each other. In a way that most people never experience. He asked me a few nights ago what I wanted my legacy to be. He is not the first one to ask. I've had friends and relatives jump in on many projects- and recently a friend asked me outright- do you want this to be your legacy? I hadn't honestly thought of it in those terms at all and the suggestion horrified me. No. My nonprofit work, LivingLFS and the support group are not my legacy. It is needed, it is one of my many families. But it is not mine, it belongs to everyone who has LFS or loves one of our war counseling families.

When Phil asked about legacy I cried for quite some time. We both have been drifting in this choppy water. Not knowing the timeline. Not knowing the plot twists to come. I don't want to have THESE discussions. But I also know- no matter how well you know a person, or their wishes- these conversations need to be had. It is always better to be prepared, but preparing sometimes feels like taunting the cancer Gods. Perhaps if I don't finish my story- it cannot have an ending. Which we all know is flawed logic, as sometimes the main character gets offed in the midst of the greatest battle. But then you see how strong the supporting characters are. 

And in that realization, I found my legacy. My legacy is the thing I have spent my entire life building. My family. Our children. My supporting characters.  They are the best parts of me. They are parts of my parents and their parents. And the worst- my stubborn, valiant little mutants. Through this great melting pot- they are my work, my memories, my time on this earth and the things I am most proud of.  And it is appropriate that they are only half mine- because you just can't beat an amazing collaboration. And a little bit of Luck.

Springing Forward

Spring is always a busy time in the Mallory house. We have 4 birthdays to celebrate in a month. This year we have also been fortunate to have a bunch of spring visitors. I like to think it's our sunny disposition that brings our friends near, not my horrible misbehaving cancer.

We brought in March with my friend Jen spending a week spoiling us. We had sleepovers at Koolina and got to play tourist for a few days. She took the girls for a couple days while I rested from the last round of chemo.


Fortunately this chemo has been a lot easier than abraxane. I get a bit nauseous, really tired for a few days and achey.  At my appointment last Monday, my onc was really impressed with my bloodwork. Not that I have much control over that, but if my counts drop it makes everything trickier. My recent ECHO showed my heart is doing good too, so that is also good news. We are 2 months out from gamma knife and I'm feeling pretty good, but it's also time to schedule the next brain MRI to see what's going on. The scanxiety starts as soon as we start talking about it because that means it's also time to do other scans. And here I have to balance how much I want to know with when I want to know it. We will see what the brain MRI says and decide what to do from there. I'm trying not to get ahead of myself, so I think about all of our plans.

Last Friday I turned 39. And I usually don't like to bring attention to my birthdays but to me this year feels like a big deal. Most women my age are lamenting wrinkles and gray hairs and dreading the big 4-0. I would like nothing more than to bring in the big 40 with style. I am just happy to have hair- I could give a rosey rodent's rectum if it was gray or blonde or the nice mousey brown that it is. It is soft and I like that the kids will sit and pet my new baby hair. As for wrinkles- bring em! Badges of experiences I want to have.

The other day I collapsed into a puddle of goo in the shower when it occurred to me that it was in fact my birthday. It IS a big deal. It is a big day. For years I thought 43 was the magic number- anything past that was bonus time as many of my mutant relatives seemed to have a tough time getting past that birthday. Even when I was diagnosed at 36- I felt relatively secure that I had time. That there were gonna be more birthdays. I can't live like there aren't going to be. I can't. SO I won't. But it doesn't mean I don't wonder. It's only human and that is something I feel like I've been reminded of a lot lately- how completely humanly mortal I am.

I used to go on all of the kids' field trips. Now the thought of petri dishes and bus rides compounds nausea. I had been looking forward to the 4th grade whale watching trip for years. But it was a chemo week and there was no way I could be responsible for kids, on a boat, while nauseous. So Phil got to go. And even though I was so happy for him, I was sad. Then he texted me- NO whales. They didn't see any whales. The good news- they got vouchers to come back and see whales. My birthday present from Phil and Lily was a trip to see whales. It's funny how things work out. That is what I remind myself when things start going bad- sometimes it's just the push forward we need to get us where we should be. A good reminder of how small we are in the grand scheme of thing- but then there is the whale- just breathing and there we were boats full of humans squealing over his mere act of breathing.

I miss normal. I miss grocery shopping and yard work and spring cleaning. I miss having the energy to do these things and not worrying that I will hurt myself or make myself sick. I miss the possibility of new. I think back on all of the hard times and miss how easy they were.  But I am really grateful that I knew enough to appreciate the normal times. And then I get upset for wasting any energy missing something that is no more. And I wonder how much time it will be before I look back on days like today and long for how easy they are. So instead of lamenting, I made a pot of soup and did the dishes. And I thought about how I always want to blog more and spent far too much time trying to find pictures for this post and never did find the ones I want.

The last couple of weeks were crazy busy. I was getting ready for a Dining out for Phil's Squadron. I have not been to any work functions for ages. It just ends up being one of the things that gets triaged. But Phil and I both know that his work is a huge part of our lives and our community and I really wanted to put forth the effort to be there. So over a month ago, I ordered dresses online. They were all too big. Normally this would be a very happy thing for me. But now it meant extra work. Trying to get a dress  to an island when running around to stores requires effort and time I just don't have to spare. And after an appropriate amount of stress- I resigned that it was going to be OK. That I had options and if the dress did not arrive- I would make do with what I had. Fortunately the dress made it and my neighbor's mom is a seamstress and willing to take up a dress with little time to spare.

I started back to Physical therapy. It has been months. My hips are feeling the effects of the aromatase inhibitors. No one recognized me. And that's how I feel a lot. Unrecognizable. And then the questions start-you look great- are you in remission? You have hair- does this mean you are finished with chemo? No one wants to hear that things aren't coming up roses. And I am grateful that people see me and talk to me yet each question is a painful reminder that I am not on the path that people want to hear about. It is part of the reason why going to social events is so hard. It takes effort to choose to be positive. I decided that I'm charting my own path and it is positive.

We celebrated Lily's birthday early, with one of my oldest friends and her family. Like I said, we've had a string of visitors. It's been nice. The tempo never calms downs here, which is tough. Phil went to Atlanta for work. Lily got sick, the water heater died, and it's a special order. None on island. So I am absolutely over normal- nothing like a healthy dose of Murphy and his laws to keep us hopping. And every day I think- I should blog- and then something comes up. Usually I hug the kids or get distracted.  Last night we played scrabble while singing along to Phantom of the Opera. Which was just what we needed and I think- as much as all the ick stinks- I have constant reminders of all the good and that is what spring is all about.

Living with Cancer

Cancer isn't always a fight. It's a quiet, sneaky ninja. It's a chase. It's a nagging feeling. It's a slow steady marathon.

For the past year and a half, I've felt OK. On good days I try to pack in as much as I can tolerate and on bad days I try to fit in what I can. Some days it's a few emails and just hanging out in the online support group. Other days its a challenge to get out of bed and the normal is overwhelming. Most days are good. Or at least that's how I choose to view it. There were some times in the past year that the icky days were starting to outweigh the good and we re-evaluated. Mostly I think it could be worse.

I am on a new chemo. Before, I took 3 different meds- all working in slightly different ways to keep the cancer from growing. The abraxane was tough- it's job is to stop cells that are replicating fast. Cancer cells replicate fast- but so do hair cells, and gastrointestinal cells, mouth cells. So the hair falls out, the stomach is upset, digestion just isn't the same and sometime you get sores that don't heal well. The other 2 were monoclonal antibodies- meds that specifically target a certain marker on cancer cells. These markers are on some other cells in the body too- but there is far less collateral damage than with conventional chemo. I think of it like a door that has a regular lock and a dead bolt. The Herceptin is the key to one lock, the Perjeta fits the dead bolt. The herceptin works by binding to the receptors- making sure other proteins can't bind to the cell and tell it to grow. It's basically piggybacking on the cancer cell - hopefully wearing it out until it dies. Therefore you don't have to worry about toxic effects like hair loss.

The new chemo is like a big fluffy rabbit foot keychain on the Herceptin lock- there is a chemo molecule attached to the herceptin- so instead of just interfering with the cell's signals- it is bringing some actual cancer cell killing action to the party. TDM-1. Touchdown Molecule 1 as Phil calls it. As we sat over a year ago discussing options- this was on the table. Phil wanted to go there- if this is the best- let's use it.  And that was how our oncologist eased us into the approach of buying time.  Because most meds only work for a certain amount of time, and you want to work your way up the ladder.

Well my friends- that is one of my beefs with cancer care right now. (pulling out soapbox)The standard of care for cancer is a great big bomb to the system. Sometimes that bomb is nuclear(radiation) but we mutants try to avoid that as much as possible. Radiation actually pisses our cells of and turns them into rogue little monsters. Ironically- stressors like toxins, radiation, viruses, injury are what cause damage to the body in the first place- when cells get hurt- we have various proteins that triage cells. If this one is too sick- it's digested and taken away- if this one is just messed up- it is given a rest and allowed to start replicating when it's all better. One of my mutant proteins- p53 doesn't respond to the damage like it should- it doesn't recognize rogue cells.  Many chemos operate off different principles of cell division- and since not all cells divide at the same time- the hope is to kill off more bad than good through chemotherapy cycles.

Standards of care are part of the medical world. It is how we ensure the majority of people will get the best or most successful treatment for any given condition(factor in cost- that's a whole 5 blog posts on it's own). Those of us with rare conditions usually learn that this one size fits all approach- although practical for the masses does not work for many. It is why it is important for things like radiation sensitivity to be known for those with Li-Fraumeni Syndrome- because with many cancers- radiation therapy is a front line defense. Unfortunately radiation works by inducing damage to the cell- essentially marking it for destruction. Some healthy cells get hit on the way- but with focused treatment there is less collateral damage than a systemic therapy- like chemotherapy that introduces chemicals to all cells. This type of radiation damage usually works by involving p53. Since my p53 is mutated- it doesn't always work.  Some chemos don't work well with mutants either. As research progresses- we find more treatments that work and eliminate those that don't. We are though- hundred of reasons why it is imperative to know as much as you can about your genetics and tumors- because why do a treatment if it won't work?

As treatments get more focused- like using monoclonal antibodies such as Herceptin- there is less damage to the overall being. That's a huge plus. But unfortunately Herceptin only works on Her2 positive cancers. As more tests become available and affordable- there will be more data and hopefully better access. The double edged sword is that the human body is amazingly adaptable and has fail safes. Some of it is sheer dumb luck. I am here today because my body spent 36 years with pretty functional p53. Now my body is struggling.  I am a reason why individualized medicine could not only make a difference in quality of life- it could make a difference in survival. I often use the analogy- gotta fight the shark closest to the boat. Living with LFS and metastatic cancer means the sharks are circling.  But there was a time not so long ago that the only sharks near the boat were breast cancer and sarcoma. I spent a lot of time researching and trying to figure out what the best option was for me- with not always the best database of information. Because despite p53 being one of the most studied proteins of all time- there is a difference between a tumor that has mutant p53 and a human that has mutant p53. And there are all of the other proteins and genes that work together and sometimes around these mutations- that make us into the one of a kind piece of art that each person is.  AND THEN we have our environment and all of the things we expose our bodies to, smoke, food, chemicals- and that is a whole other host of factors to consider. Sometimes the scientists start with cells and looking at them and how they react to chemicals and they realize a dish full of cancer cells just died and the normal cells lived- eureka. Yet as the research progresses- they find once they make this chemical into a pill- the body could break it down or change it and the chemical cannot get where it needs to be in high enough concentrations to do any good. Sometimes there are side effects that make it unbearable. And all of this research takes time and people and funding. The internet is closing the gap between people and the more people talk and share stories and compare notes- we will find what works and what doesn't. Of course science and research are businesses- but I see some exciting advances happening- collaborative efforts that mean a faster journey to important discovery.

So back to my sharks,  Kadcyla is throwing in some chemo with a specific target. I was lucky that I had a good response to Abraxane, Pejeta and Herceptin.  But over time- the cancer found a way around these drugs and we had to switch. This will be the chasing game from here on out. I will never be cured. There will always be sharks. This is metastatic disease. I will not have a few cycles of chemo and then be done. I will do as many cycles as my body can tolerate until I need a break or it stops working.  The first week after the last treatment I had stomach aches and head aches. Nothing entirely debilitating, but the what ifs were. The unknowns. Is it the side effect of the chemo or are tumors growing? Is this getting worse or normal my body saying WTF? There are women who are diagnosed at stage 4(aka metastatic or "advanced" cancer) There are women who never get 18 months of hoping the cancer doesn't metastasize before it does. Even though we all face the mortality of it when we are diagnosed with cancer, each stage has it's own layers of hope. There is a certain amount of luck to any of it. All it takes is time and one determined rogue cancer cell that can be the difference between a stage 1 and stage 4. No one woman is any less or more deserving of survival- or man- or child- in the eyes of cancer -we are just a host. We can be gracious hosts or bastards and like anything that is a personal choice. Just as that one cancer cell can survive despite the odds, so can anyone.

In the past year I have come to terms with the fact that I will never be cancer free. I have come to terms with I don't know how long I have here on earth.  I cannot spend every day "fighting". Nor can I spend every day "vacationing". SO I choose to spend my days living. In the often messy, chaotic and unglamorous way that I have become accustomed to.  And I will try to reach a compromise with the cancer in my body- because there will not come a time that I can evict it all. Some need to own cancer, some need to tie it up in bows, some need to fight. Those are their sharks, they have to deal with them as they see fit. We are who we are because of experiences. I lost my brother as a teen. He did not get to graduate. Fall in love. Have children. Be an uncle. So at times when I think of all the things I might not get to do, I think about the things I HAVE been able to do. And by choosing to live is to honor his memory.  He did not survive, but his memory does. When I laugh or smile through a tough situation, I honor my dad. He may not have lived, but our memories do. I try show my children that it is ok to have faults and it is ok to have grace.  Through some of the simplest moments around our dinner table are the magical moments that memories are made of and it is then I know- I am a survivor because they are me.

Immunity from Stupid

Vaxer's. Anti- Vaxer's. So much discussion lately about the merits of herd immunity- especially in light of the measles outbreak linked to Disneyland.

We were at Disney during the time frame in question. The news splashed across my mobile- and honestly I sighed and went back to trying to annihilate Phil's score in Toy Story Mania.

Common sense seems to be lost. I have quite a lot to say on vaccines. But it is just that- what I have to say. Each person really needs to find their own voice and what works for them.

Here's some background- after Lily finished treatment- I spent months researching family history, the history of cancer, p53, and Li-Fraumeni Syndrome. During the course of this research- I found myself on a tangential path into the world of vaccines. From Smallpox, to polio and the SV40 contamination link to cancer to Anthrax and Gulf war syndrome. It is fascinating to me how many scientific advances are driven by war and politics. Vaccines are no different.  Vaccines are intricately related to illness and viruses with an undercurrent of social policy. For years it was refuted that viruses could possibly be linked to cancer. Then gradually there is a shift, as data and needs collect- the view alters. One of my more recent research topics- the HPV vaccine- and the evidence of a shift in thinking as the HPV vaccine is to prevent viruses that cause cancer.

I believe in vaccines. I believe they work and I think they prevent a lot of devastation.  I believe they are safe and necessary for the average person. There have been missteps along the way. There were tainted vaccines. There were illnesses caused by vaccines. But there have also been many lives saved.  My kids are vaccinated. I am not a huge fan of the combo vaccines- I think much of our body's confusion(autoimmune/allergy/reactions) can be attributed to throwing too many things at it to build antibodies to at one time. I also believe heavily that the over processed foods we are eating- cause a lot of these problems as well so if you see an anti-vaxxer out there feeding their child a happy meal- please enlighten them there are more chemicals in that nugget than a vaccine. I'm not an immunologist- so my logic could be horrendously flawed- that is just how I feel. I think our bodies are much smarter than we are and we have to find the balance between thinking we know what's best through pharmaceuticals and giving it a defensive leg up.

I've always been on the fence about the flu vaccine. Every year that I've gotten it- I've gotten really sick. So I am of the opinion- I'll take my chances and hope for the best. Mind you- I am immunocompromised, I have 2 "immunosuppressed" kids. I do not weigh the decision to turn down vaccines lightly. Both Phillip and Lily get the flu vaccine every year. Pretty much their endocrinologist has the nurse come in and give it to them.  Generally Bella and Kiera do not.  SO we are half and half in this house. But in my mind- flu vaccines are not the same as other vaccines.

You have to find the balance between letting your body do it's job and the risk management of severe illness. Herd immunity keeps popping up in article after article- blogs-stories.. Social responsibility to get vaccinated to protect the weaker members of society. As much as I believe in this social construct- it is a flawed reasoning pattern to promote vaccination. Herd immunity is a good thing- but the problem is- it is being preached to a self centered audience. The same audience who feels everyone deserves a trophy-yet they can bend the rules to fit their individualized "needs"- that no child should be left out- that bullies should be publicly shunned. To promote vaccination as some philanthropic social responsibility to protect the weaker minority- yet neglect that much riskier every day behaviors put these immunocompromised populations at risk- is short sighted. And being preached on self centered ears.

There is an overwhelming lack of big picture. There is an absence of thoughtful consideration of the forest through the proverbial vaccine trees. Big picture- if an immunosuppressed individual goes to a place such as Disneyland- they are opening themselves to an international myriad of health issues- only a few of which are illnesses that can be vaccinated against. Do we screen international visitors and check shot records- No.  I believe everyone should live their fullest lives- and find joy and LIVE however they see fit. But where on earth did the over-riding belief that the general public is out there to protect you come from? When did we become immune to personal responsibility to protect ourselves or our children by doing what is best for them? And sometimes that means making unpopular decisions and facing the consequences of that.  As someone who has done Disney twice as an "immunosuppressed"(I use this lightly since my counts have been very steady ) and as a mom of a cancer patient on her Make A Wish trip- there are so many places where you are opening yourself up to problems. For one you eat out more- and although there are food safety standards- immunosuppression #1 sucky rule- no eating out. Why is that the case if there are food safety standards- because the standards are for the average masses who can fight off a bit of bacteria. And people are human. And sometimes not too bright and most definitely lacking common sense and hygiene. It is purely about risk reduction.

This absolute disdain and condemnation over the carelessness of antivaxers who exposed children too little to be vaccinated at an amusement park is ironic. At best.  I think if you have the means and desire to take a baby to Disney- Party on Wayne. Party on Garth.  Phillip was 9 months at his first Disney trip- a 50th birthday celebration with his grandma. Of course- phew- he was vaccinated at that time.  BUT you have to put it to the common sense test- it is a big place with lots of people and I don't care how many cast member trash ninjas they have popping up out of secret entrances- that leaves room for a lot of dirt and germs from so many locations. This past visit a kid coughed on my head. So other than taking airborne daily and hand washing like an OCD olympic event- I knew going in- getting sick was a distinct possibility. Heck Bella developed a cough on the plane there. Phillip's nose started running. Perhaps instead of earplugs and candy "I'm bringing my baby who is gonna cry" on an airplane gift bags- we should consider antibacterial, airborne and lysol . Because if you are taking a baby to such a place clinging to an expectation that humans there are all of a certain mindset or social aptitude for biological hygiene- you could be very disappointed. People get sick. The biggest threats are the people who do not know enough or care enough to be concerned outside of their infectious little bubble. How it it we expect a certain accountability of sacrifice from them yet are willing to not apply it to ourselves?

Life is about risk management. The government issues safety guidelines and vaccine requirements. Not everyone fits into the nice neat little box of standards. People who have gotten vaccines have gotten the diseases they were vaccinated against. It happens. Recently a mom blogged complete contempt for whomever exposed her newborn to measles in the doctor's waiting room. First of all- most good clinics try to deconflict well baby exams with sick kid appointments. Unfortunately there are a myriad of germs that can survive outside the petri dish of humanity for quite some time. EVERY time my kids go to their routine endocrinology appointment- they end up sick. We go every 3 months and I did a dance recently when Lily got bumped up to 6. We go into the waiting room- they sit with their homework in their lap, we sanitize as we go.  But I hate to be the bearer of bad news- the sick people are the ones who absolutely NEED to be there. AS much as I promote prevention and wellness exams- a doctor's office is where people who are sick wait. A woman was diagnosed with mumps as I sat getting chemo in the chemo bay one day. Mumps. She had been vaccinated. But her immune system took a hit from chemo. And she got mumps.  I didn't feel angry at her. I felt really bad for her- she looked miserable. Sure I worried I might get sick, but I'm pretty sure she didn't want to be sick either.

There is a lot of misinformation and stupidity everywhere. You cannot fix stupid.  If only there were a vaccine for stupid. You can hope to educate and raise awareness. I do this daily for LFS. DO I think everyone should avoid radiation,oh well that IS a can of worms...let me rephrase. Mutants are especially sensitive to radiation. Sometimes it is the best option- but for screening- it should be avoided if possible. Many mutants have a tough time getting the screening they need or getting it paid for by insurance because the standards of care for treatment do not include it. As a group- we have different needs. Do we think every single person should have to follow our rules since it would be more convenient for us( the world would be a better place- but I digress).  Societal norms are in place to help the majority. When you get diagnosed with a rare illness you immediately ask why? Why is there not a cure? Why is more not being done? Well because the shark closest to the boat gets the attention and for the public in general- communicable diseases are some of the biggest and nearest sharks. You are the captain of your boat. You can steer it into the sharks- away from the sharks or keep it on land if you are that afraid of sharks. You gotta do you. You gotta be you.  Just remember sometimes you don't see those sharks at all- doesn't mean they aren't there waiting. And feel free to yell at the sharks and berate them for their lack of vaccination- I'm pretty sure they will weigh that heavily in their decision to eat you.

Gamma Knife Experience

I figured I should probably talk about the experience before I forget- although really I could just blame it on my brain tumors or the fact that I just had radiation on my brain.

It really was completely and totally as advertised. I spent too much time looking at cancer forums and trying to reassure myself that it was going to be OK. But that is part of the process- that is why forums and support groups really do provide an invaluable service during these experiences. Sometimes you just have to hear from someone else that they survived. And sometimes the forums can be a scary place because it is a cross section of the optimists and the pessimists and the optimistically realistics.

I think any time you mess with the brain- things could happen. It is such an integral part of who we are. You wait and wonder- hoping that you are wondering for nothing. You wonder what you should be doing in the case that everything changes and you superstitiously try not to do anything in hopes that it won't.

I was pretty terrified. The jittery nervous making hugely inappropriate jokes kind of terrified. Better living through pharmaceuticals kind of terrified. Knot in stomach, jumpy.

Waiting with the Tools.

We travelled to town. The gamma knife facility is the only one on the island. We walk in and are introduced to my nurse for the day, Trisha - which I take as a good sign since one of my best mutant buddies is Trishia. I like Trisha a lot- especially after she gives me 5 mg of ativan- to take the edge off.  It helps the screws and head gear that are sitting around me feel less ominous. 

The Gamma Knife Head Frame

Screws and syringes of numbness.

We sit for a few minutes, letting the ativan work and the docs come in and say hello. They had already been reviewing my MRI and discussing the plan.  In the few weeks between MRIs, a new, 3rd tumor popped up. It is small, but in my frontal lobe. I can tell this development freaks Phil out. This is a fast moving ballgame we are in. It's hitting him. Wish I could share the ativan- he looks concerned, I just smile so he knows it's gonna be ok. Better it shows up now and we zap it. 

They explain the process to me again. Dr. I is very generous with the novocaine he injects into where the pins will hold the frame on. 2 on my forehead and 2 in the back of the head. I can hear the weird crunching as the needle punctures the tissue, a little stinging and then numbness.  He starts screwing the screws in and I feel the pressure of it- but no pain. They warned me about the pressure and assured me it would pass in a few minutes and it did. 

 They spent a few minutes making sure the placement is correct and aligned.  This is pretty important so that there is a point of reference externally and internally.

 Once I'm officially screwed in- we go down to CT.  They do a brief head CT which is then overlaid on the detailed MRI I had earlier in the week. This helps them visualize all of the structures, tumors and frame placement in order to program the specific coordinates into the gamma knife machine.

We were told the planning can sometimes take hours, but it really felt like mere minutes. It's one of those strange moments that you wonder which is worse- the waiting or the wondering if they should take a little bit more time to plan. They assured us they had done the majority of the planning before we got there- once they had the CT data- it was pretty easy.

We headed down to the basement- to a big open room with a skylight. It's amazing how such a thing like that eases your mind. Well that might have been the ativan.  I did really feel a bit like Dead Man Walking.  But I took lots of deep breaths as they fastened my frame to the machine and tried to get comfortable. I had to be there for 65 minutes.  

 Through this door is where the magic happens.

 I was really glad that the back screws were numbed up good for this part- since my head is resting on  them. I felt a little pressure but the table tilted a bit to support my back, so it wasn't uncomfortable.

 I hoped that I would sleep. But I was awake the whole time. It was noiseless except when the machine changed coordinates. I got to listen to music- I just asked for something relaxing- the last thing I wanted was easy listening and to hear a song that would turn me into an emotional wreck. They chose classical. I probably would go more new age/spa in the future- classical scores tend to blend together and I couldn't gauge how long I'd been in there. Every now and again my back would try to spasm and I'd just breathe through it trying to be super still as I visualized the tumors going up in poofs and the healthy brain being protected.

My friend Cheryl said I needed to make sure I brought my spider along with me. Another friend said he envisioned it like Cerebra from X-men- actually pretty close. Phil said he preferred to think of it like laser cats- shooting the tumors.  I didn't feel anything but numb, yet I know that like a sunburn- radiation effects can take some time to brew. The idea is that with how specific the gamma knife is- the tumor would mostly feel the effects- not the healthy tissue.

When I was done, they unscrewed the frame. That was a surreal feeling.  One of the radiation oncologists gave me a written prescription for steroids. Sometimes the brain swells in response to the tumor dying. Phil looked at the piece of paper and looked at me- what do I do with this? I laughed. You take it to the pharmacy and they give you meds buddy- if you want to have the full experience we can take it to walgreens on the way home.  I still have some "in case" steroids- so we can wait til our next trip to the hospital to fill the prescription.

The holes healed really nicely. I had to keep the bandages on for the night, but I was surprised at how small they were. Bella and Lily were both nice enough to point out that I had zits that were much bigger than the holes. Thanks girls. I felt ok after. The screw hole areas were a little swollen and uncomfortable for a couple days, but nothing major. I had a few minor passing headaches and I notice if I get tired or stressed things feel worse- so I try to avoid that. 

The spots on the back of my head are still sensitive.  I don't lay on them because it feels kind of like a sunburn. But all in all I feel Ok.  I started the Arimidex last week and so far haven't really had too many side effects. Some joint stiffness and GI stuff. I had my new chemo, Kadcyla yesterday and it was entirely uneventful- which we like. It was an hour and a half infusion, but in the future it should only be about 30 minutes plus however long it takes the lab to come back with bloodwork.  I will have to watch my blood counts and for bruising. The nurses say they see low platelets a lot with this chemo. But they also said they have quite a few ladies who have been on Kadcyla for years and doing well. I would very much like to be one of those ladies.