Wednesday, September 30, 2015

Day 9 of 21.

I am definitely tired. I seem to wake up every hour. I read some last night. My day was pretty unremarkable. I know Kiera has ballet until 8:30 and Phil won't be home in time to take her, so I pace myself during the day to reserve energy. Like that's a thing. But I try. I check in with a few friends.

After school Kiera has to print something for a homework assignment. And we are out of ink. I'm glad we didn't find this out at 9 O'clock tonight. I can run to the store while she's at ballet.

One of her good friends is at ballet when we get there. Her mom runs to Costco with me. We spend the entire time chatting. It's nice to catch up. When we get home Phil and I watch a little TV. Then we go to bed. I seem to still wake up every hour. I listen to the rain. I listen to Phil breathe, then snore, then breathe. I watch the little blue light on the humidifier. I drift off to sleep. I wake up. I sleep. Phil kisses me goodbye. I made it through another night.

Tuesday, September 29, 2015

Day 8 of 21. Echo. Echo.Echo.

I am due for scans. Yuck. Yuck. Yuck. The scanxiety starts. I mean- rationally I KNOW that the scans are just giving us the information we need to guide treatment. I know that having the scan doesn't change the outcome- if there is progression- there is progression. My best bet is to catch it early and switch up treatment to keep the cancer at bay. BUUUUUT it doesn't feel like that. It feels like a great big thunder cloud waiting to rain on my carefully planned picnic. It feels like a vice around my heart- squeezing until I can't breathe. What if? Well we deal, IF. This is the dance. I haven't even scheduled the scans yet- my onc will put the orders in next chemo at our appointment. But the scanxiety is there.

Monday was my ECHO. echocardiogram. Many chemos are cardiotoxic. This means they affect the muscle of the heart, weakening it. So every 3 months I have an ECHO to monitor my heart. ECHOs are about as easy as it gets. It's an ultrasound of the heart. Non invasive, not painful- mildly strange to  lay there topless while a man rubs a wand around my breast- but I'll take it over a colonoscopy or a dental cleaning any day.

There are 2 ECHO techs. Both male. I've had probably 8 or 9 ECHOs. I've been with Lily for at least that many. I know a thing or two about how they are done. ECHOs should not hurt. There is no reason for them to hurt. The toughest thing you have to do is hold your breath for a few images and lay there half naked. After a couple of ECHOs, there was a new cardiologist and a new protocol. Different docs like different images- I'm cool with that. Although I think 90 images every 3 months when I have absolutely NO flags or issues might be overkill- but I am not a cardiologist and the exam is relatively easy so I keep my trap shut. Well each time the tech goes through his schpiel about why we are doing it, how it is done and that it can be uncomfortable and if it gets too uncomfortable to let him know and we can take a break. I always kind of laugh because it's an ECHO. I've have tons of ultrasounds- through 4 pregnancies and well been cut open many time and had a breast chopped off- you don't scare me with your wand and cold jelly. Although I am offended that we have had several meetings and he still feels the need to go over the whole shebang.

And then one time over a year and a half ago, he bruised me. And I didn't say anything. Because I was in chemo and just attributed it to chemo effects and being sensitive- hell bushing my hair and teeth hurt too at times. I asked a nurse friend if this happens sometimes and she said absolutely not. So next time I was a little stressed- I didn't like confrontation and this guy literally rubbed me the wrong way. Well I lucked out and had the other tech. He was fabulous- talked to me the whole time- was quick and explained everything but not in a condescending way. He said things like- you have these all the times you know that this and such and such- and this shows this and that shows that. I would have been ok with silence too- but it was nice to be in on the whole thing.

So next time Phil goes with me and its bad tech again. And Phil can tell I'm uncomfortable and he points it out. We take breaks but I can tell he jabbing harder than necessary. The next time my neighbor Monica goes with me- I'm in chemo and tired. I don't want everything to be a battle so good friends go and battle for you. So after have 2 extra sets of eyes see what an ass he was - I finally felt comfortable refusing to see him. So each time I schedule, I request not him. It's an issue. But until they fix his malfunction- I'm not gonna be the end of his control issue. But it is a simple thing that creates extra stress that shouldn't be there. That's what it's like with chronic health care issues.

So yesterday- the good tech walks by the waiting room and does a double take. If he's not available- they've actually had cardiologists or residents do the ECHO for me- it's been interesting- but guess what- none of them hurt. I'm worried about timing a little- since I had a little bleeding yesterday. It's been probably a year since I've seen the good tech- he is impressed with my hair.  We catch up, he shows me all the new angles the machine can measure my heart. The 3D version is pretty cool. He does a quicker protocol since I'm there every 3 months and to date have had zero concerns. My ejection fraction is 60% which is slightly less than it used to be(65%) but not concerning. And different techs mean different techniques so it could just be artifact too. Ejection fraction is the measurement of how much blood is being pumped out of the heart chambers. It's how they measure the effectiveness of those muscles. Generally they look at the left ventricle ejection fraction. It's supposed to be 55-70%. So I'm right in there. All is well.

I wipe all the jelly off my chest and it's time to go get the girls from school. 

Day 7 of 21. Sunday Bloody Sunday.

I get up Sunday and feel pretty ok. End of week 1.  Phil takes the boy to work out and to get a few things from Costco. Kiera keeps me company as I make the week's batches of breakfast burritos and bean burritos. It's an easy way for me to feel useful.

Sundays used to be the girls' drama day. But in the attempt to cut down on some of my activities, we cut back on their participation. They were totally cool with it. They have so much fun performing, but putting on performances take a lot of behind the scenes work. Everything seems to require extra parental involvement. I always felt bad. I felt bad saying no, I couldn't help and then I would try to help and get exhausted, I missed hanging out with the other moms. I felt the subtle shift.

Yet there is a production of Cinderella and Sleeping Beauty coming up and both Lily and Kiera really really wanted to be a part of it. So here we go again.  Life lessons through drama. I love the theater. Love. Fell in love with it when a friend took me to see Funny Girl in Toledo. I had no idea what it was about, but I felt like I was part of this special club. Stay up ast your bedtime, "arts" club.  In 7th grade I was the lead in our musical production of a Back to the Future knock off. I had a solo. I think we skipped an entire scene and worked some magic to make it flow. All I remember is terror. Absolute terror. I hated being on stage. Hated. Costume changes, the lights, eyes on you. Yuck. But I do love seeing a show. Seeing Phantom as a teen at a time where everything about it resonated with me. Going to see it after dad died, knowing how much Christine wished her father was somehow there again. In our special IB program in high school we went to operas and shows. My friend Sarah was in a rather tragic performance of Once Upon a Mattress. She took me to see Rent, I had to call in sick to work because it ran long. Theatre just seems to do that. It's live. Unpredictably predictable.

The first rehearsal is Sunday for the girls. It's also football season. Football is Phil's theatre. The Broncos are playing and I want to spend the time with him. I plan on dropping the girls off and coming right home. He is absolutely over the drama scene. He comes to watch the productions, but he just doesn't have time to deal with all the behind the scenes politics. Mostly he knows it causes me stress and he feels I need to get away from that.  I chat a bit with the moms.  It's hard. It's hard to not jump in and help with some crafty project. I love crafty projects. Being able to sit and watch the girls sing and dance their little hearts out and hang out with the some really great ladies. Painting sets, making wands and cupcakes and planning for Disneyland performance kept me busy at a time the world threatened to crash around me when I was diagnosed with mets.

In many respects, every day is a performance when you live with cancer. I have friends ask all the time- no how are you really doing? I kinda suck at acting. I have no poker face and my filter has pretty much been destroyed. What you see is what you get.  Inefficiency drives me out of my mind. I can forgive lack of planning- but you also have to forgive my lack of spontaneity. That's kind of the schtick with spontaneity. It either comes together or it doesn't. Planning takes some of the unknowns out of the equation. Life and theater- lots of things can go wrong. You roll with it. You will be judged on your appearance, how you sound, how you move. Is any of it really you? What people see is not always what you intended to put out there. Sometimes shit breaks and the masterful - show must go on attitude- can either make or break the outcome. And when it comes right down to it- when someone else is calling the shots- you are at their mercy. The best actor doesn't always get the part because they don't have the right look. There is favoritism and politics and you just have to learn to deal. It's hard when life and cancer throw a whole bunch of perspective in your face daily.

So I show Kiera daily- the background players that make the world WORK. How you react to what goes around you is important. There is no limit to the good you can accomplish if you don't care who gets the credit. So I tell her to do what she loves and when she stops loving it, we re-evaluate. We are fairly limited- and we live on an island. Sometimes we have to get creative, or work within the confines. That is life. Find your happy. Shoot for Broadway if you want- but know that a little community theatre somewhere that can bring lots of joy and entertainment to a group that can't get to Broadway. We hop in the car. I scratch my hand and it starts to bleed. It was an itch that is now bleeding. A little tiny scab is now a mess. It doesn't stop. I'm not going to bleed to death but it reminds me that I am not as healthy as I like to act. Like I said, Im a bad actor.  Kiera grabs a napkin and holds pressure on my hand. I didn't ask her to, I didn't point it out, she just did it. She hates germs, she avoids sickness so this little gesture touches me immensely.

I drop them off and return home. Phil is on the phone, working. After a half an hour of whatever it is he is arranging for work, he stops the game altogether. Our few hours together is sidelined. Benched. One of the theatre moms texts to see if she can take the girls to dinner. I realize it is almost dinner time and I can tell our family dinner plan is not going to come together tonight so I say yes.  She is one of those behind the scenes people that makes the world WORK and a better place. She never gets credit nor asks for it. But she brings so much goodness to the world and to my bloody Sunday. For that I am grateful.

Monday, September 28, 2015

Day 6 of 21. Co-misery for sport.

Phil woke up early to go sit alert. Ever since that unfortunate attack on Pearl Harbor- there are men and women who maintain a strict watch over the Pacific and these Islands. Days. Nights. Holidays. Extra shifts when the President comes for vacations and holidays. When we first moved here, that was his job- day in and day out basically waiting for a call that everyone hopes never comes.

I think of the many who are deploying and are deployed and again feel lucky that he is here. That if the shit hits the fan, there is a chance he could break away and be with us. And that feels selfish. I feel bad for being selfish. After all, he's spent the better part of these 20 years educating and training for the mission. Whatever that may be or however it changes. His biggest limfac is me and my stupid cancer.

Now that my kitchen counters are clean, I realize that I probably need to get a few things from the store. Lily again is the first up. She has a very special relationship with food- she is either the best or worst person to take shopping depending how you look at it. Kiera joins us downstairs. I ask her to make a grocery list for me while I shower. Bella has a soccer game later, I am bringing snacks next week. I try to remember to tell Kiera to add that to the list but it gets forgotten.

Lily and I head out and I decide it would be better to go to the Commissary(co-misery) on base instead of Safeway. The prices are a lot better and it's not that far. One of my wifely duties that I've been shirking over the past few years- grocery shopping. I don't really enjoy it. I like cooking when energy allows- and it is a necessary piece of that. Phil generally runs to costco once a week and that holds us over.

They are renovating the commissary. It's been so long since I've gone, things aren't where I remember them being. I try to focus on the list- Lily is like a kid in the candy store. We aren't even half way through, the cart is full, and we mostly have the list covered. I grab a few remaining items and realize we were just sucked into the co-misery time warp. I don't know how, it just always take longer.

Lily agrees to stay home and put groceries away. We unload the car, I grab Bella and Kiera, we are off to Bella's soccer game. I think we have reffing duties today. I don't know for sure- all things communication lack. It's a trend with all the activities. I don't know if it's an island thing or an epidemic. I feel like activities almost require a family effort and there is a general lack of planning- yet it's ok because if you are really devoted and care about your child you are there all the time anyway and would be "in the know". I let the team mom know Kiera is here if they need a line ref. She said she thought they had enough parents but Kiera could shadow her if she wanted.

The girls warm up and the rain is intermittent. Kiera holds the umbrella while I snap pics. We are the bad news bears. The girls are lucky if 5 players show up. Today the 6th shows up as they take the field. All of these girls just want to play and are happy to be there. That is what sports should be about when you are 9. Not the potluck- not raising money to travel to the mainland- there are plenty of kids right here who just want to play.

Bella's team is blue. One of my favorite shirts is Blue- it was a fundraiser for St. Baldrick's done in memory of a very special little girl named Haley. It is phenomenal- It has her signature on the front and her handprints on the back- I've been hugged by Haley. She was such a sweet kid and a brain tumor took her too soon. I think of her mom who I know would give anything to be sitting on the sidelines watching her baby run back and forth. Just to have one more hug. I pull Kiera close and hug her, she's learned to humor me in these moments. There are so many of them.

Bella played goal keeper for a quarter. She took a hard shot the the chest and just shook it off. It was impressive. Phil texts me from work how he's sorry to miss it. I get snippy and mention she's got other games- they are on Saturdays. He knows what I mean. I know he would rather be here. I apologize. Kiera and I can hear each other's stomachs rumbling. We discuss all the possibilities to remedy the situation after the game. Lately she hangs out with me a lot more. I don't know what the change is. Generally she avoid us- I guess I fake normal enough that she is comfortable with me again. Kiera doesn't do sick. She practically lived with neighbors when Lily was in treatment. The game is over, we grab Bella and are on our way to lunch when I get a text. Shit. I forgot about reffing. I used to absolutely be appalled at people's forgetfulness. Like seriously? And I completely forgot that was why Kiera was here- was to ref for us. My secretary while I'm driving, Kiera texts back apologies and that we are on the way.  I am so hungry I'm shakey. Kiera tells me we can just drop her off and go get food- if we could bring her back something that would be great. The soccer field isn't a quick trip so Bella and I just stay and watch Kiera ref. I think back to the times we reffed (by we I mean Phillip and Phil) for her games, all the hours spent driving her places and sometimes I wonder if they even notice. And then I realize, leading by example works. Be the change you want to see.

When she is done- I ask her what she wants for lunch. Soft pretzels. The only place to get those is the mall or at the comisery- if I had only known this morning. But we are close to the mall- what the hell? It is saturday and parking is hell. Mental reminder to self- online shopping for Christmas. Apparently K-pop is performing- we walk right by it- this is a thing- and people are very into it. We order pretzels. They have pumpkin spice pretzels. Oh yes they do. They were delicious. 

Sunday, September 27, 2015

Day 5 of 21. Friday. Nights.

Thursday night was not great. I woke up with a start. Felt like I was drowning. I couldn't breath. I could breathe, and I sat there deep breaths in and deep breaths out. When you've had tumors in your lungs, all breathing issues tend to produce anxiety. I squeezed my eyes shut and tried to convince myself I was fine yet my heart seemed to pound faster and faster. Even though I was laying there breathing, I felt like I wasn't. I know it's in my head. And the more I try to convince myself it's not, it builds. I grab my kindle and head downstairs. It's 11:30. I start heating water for tea. I peruse my collection of anti stress, relaxing, calming teas. I start rearranging them. I then notice the dishwasher didn't run. I load the remaining dishes while the Tension Tamer steeps.

I wipe down the counters and realize the clutter is bothering me. Phil's work schedule is back to "normal".  Our quality time consists of the time we sleep next to each other and chemo Mondays. And stupid flipping anxiety attacks are eating into that. I don't want to resent his work, but part of me does. We are so lucky. I am lucky to have him. He is lucky to have a job. We don't have to worry about healthcare or fighting the insurance. Before I know it the counters are sparkling. I move on to sweeping the floors. But first I wipe down the chairs and the couch. My hand starts to swell. A little reminder of the damage to my right side and why I try to "take it easy". The house obviously doesn't clean itself.

 I tend to clean when I am upset or angry. I am concurrently envious and distrusting of a spotless house. I assume there is unrest behind the spotlessness. A friend once told me she cleans because it is immediate results, instant progress and control when otherwise things seem to be spinning into chaos.  Within minutes of cleaning, I find that it gets dirty again, it feels like an exercise in futility - but yet it feels so much better when it's clean. Perhaps I have no control over the chaos, but there is some control here. My back starts to ache and I sit down with my tea and book. Somewhere along the line I fell asleep. It's almost dawn. I get up and my legs feel a little jello-y. Also normal ish. It was much worse on the old chemo, but I think this one affects my platelets a bit. I'll have to be careful the next few days, if I bump things or scratch too hard- I'll bruise and bleed. Nothing too bad, just have to be careful. The first few cycles this symptom would happen by wednesday and last til Saturday. Now it shows up and weeks into the next week.

Lily comes down and sits by me for a minute. I feel icky. I kiss her big fluffy curls and head upstairs. I feel weary. Phil is awake and shaving. I kiss his back and tell him my legs feel like jello. He comments that I have been walking more. Not that kind of jello- not the I'm a little shakey cuz my body is getting stronger. It's the other kind- like after you've had the flu and you just feel like a weaker version of yourself. that's me. He's already made the bed- I climb on top- he brings me a soft blanket and drift off. Good sleep. For 2 whole hours. Now why can't I sleep like this at night. 

Friday, September 25, 2015

Day 4 of 21. Thursday. The Mongoose and the Sammich.

I woke up feeling a little off. This is normal for day 4. My neck is a little achey. My bones are a little achey. My stomach is achey. If I don't eat, I'm nauseous, if i eat too much , I'm nauseous. There is a balance. Food doesn't really sound good, but if I eat little bits, I feel better.

Kadcyla works by attaching chemotherapy molecules to herceptin . Herceptin is a monoclonal antibody that targets certain receptors(Her2) . There are lots of Her2 receptors on Her2 positive cancers like mine. Not all breast cancers are Her2+, they are finding some other cancers have her2 receptors- that is a game changer for treatment. It opens a window for some stomach, ovarian and esophageal cancers.

Thursdays are kinda like my hump days. Even when Phillip and Kiera were little-Thursday ended up being a do something fun kinda day. Phil works a lot of weekends, so when the kids went off to school- it became a good day for me to go for a long walk- go to lunch with a friend, do something fun. I decided that I wanted to go walk at Koolina. So Off I went.

It's the off season, so parking is easy and it's not too crowded. The tradewinds are back and feel wonderful. I can feel the wind blowing through my hair. I packed a hat- but am enjoying the wind through my curls too much to put it on. I walk across the street to Island Vintage Coffee and grab a coffee and a sandwich for later.  I walk back around the lagoon to a big grassy overlook which is pretty deserted. I'm surprised there isn't anyone here, it's a lovely breezy shady spot. The busy lagoon is to my back and I can watch the waves crash against the rocks.

I sip the coffee and just appreciate the day. There are a lot of paradise taxes and this is definitely one of the perks. It is early, but I love the salad that comes with the sandwich. I'm gonna eat it. I struggle a bit to untie the knot of the plastic bag. Its not really a chemo thing, or a coordination thing. I've been biting my nails. I've got nothing to work with.  I get the bag undone and open the box, it's a simple green salad with pistachios and a balsamic vinaigrette- but it's yummy. I take two bites of the sandwich, well because its there and taunting me. I close the box and loop the plastic bag. I get out my kindle and read. After awhile and a coffee, Nature calls. A man has been running sprints with his daughter next to me for 20 minutes. It's a little annoying, but I figure at least I can run to the bathroom- they know I'm there and any passerby would figure my chair was theirs. I put my lunch on the seat.

As I walk back to the chair, running man and daughter are gone. Of Course. A mongoose is slinking away from my chair with what looks like a piece of very yummy very overpriced resort sammich. MY Sammich.  YOU LITTLE SHIT! I yell. It stops, It looks at me and I swear it smiled with it's beady red eyes. Man those beady red eyes creep me out. I look at my chair- the bag is open. The box is open and my yummy overpriced sammich mauled.

I close the bag and mourn the loss of my lunch, while grateful that I at least had the salad and 2 bites. I'm pretty mad at the mongoose. I look up to see him darting from the bush to behind the tree. The lil rat fink punk stops to stare at me. I tell him he doesn't get my sandwich and he's a little thief. If he had asked, I might have shared but I DO NOT reward poor behavior. He darts from the tree to the rocks, continuously watching me. I think the japanese tourists nearby must think I've lost my mind.

The mongoose is back, with a friend. It's not a party, I tell him. They dart to the rocks and back. Theywatch me. I watch them. I pick up a few nuts. They are getting a little too friendly and edging closer. I just want to scare him off and I pelt the nut in his direction. It bounces off his little head with a thwap. I feel bad for half a second until he picks up the nut and tries to eat it. I AM NOT FEEDING YOU! He runs to the bush.

I can't relax and read because I'm afraid the wirey little rodents are planning a sneak attack. I get up, take my half eaten by mongoose overpriced resort sammich to the trash can. As I walk back, the little rat is on my chair. Grrrr. He jumps off as I approach, I swear he looks smug. Ha ha. No sammich for you. Who's smug now? I sit down and here comes another mongoose, slinking out of the bush with a BABY mongoose in trail. Oh dear god. These little shits are master manipulators. I give up, I pack up my chair and head to another shady spot, not so near bushes at another lagoon.

Mongeese-1, Jen-0.

Day 3 of 21. Work Wednesday.

I have not "worked" in years. I am a professional volunteer and a wife and mom. That IS enough. There were years in between becoming a mom and now that I wondered IF it was enough. I'm pretty independent, it would be nice to bring some $ to the table. I am lucky that I do not need to have a job for us to get by. Especially here in Hawaii. Yikes.  I used to cook, clean, transport, help and the "savings" was equivalent to a full time job.

Wednesdays are "short" days at school. The kids get out early for some silly antiquated reason. I usually spend my mornings picking up and taking care of business. Sometimes I go and hang out with my sister in law and her boys. Business is mostly work I do for the nonprofit Living LFS.  It's work I'm proud of and happy to do and it is important. Li Fraumeni Syndrome will never be a worldwide epidemic since less than 5% of all cancers are linked to hereditary causes, but it is absolutely a worldwide disease. The internet gives those of us with these rare conditions a chance to connect and support each other. It is pretty amazing.  I moderate the support group, run the Facebook page and try to keep things rolling smoothly. In an organization that is for people facing cancer after cancer, run by people facing cancer after cancer- this is pretty tricky. But these people are amazing and I have help from some wonderful mutants. There are ups and downs in the mutant universe. Sometimes all we can do is just be there when good friends are faced with impossible situations.

 I rest up of for the after school routine. I pick the girls up- come home, they do homework for an hour and we are off to voice lessons. After voice lessons I run home, swap the 2 singers for the soccer player and take her to soccer practice. This Wednesday, my SIL made us dinner, which was fabulous- and no small feat. It also means one less night of fast food- because with Phil's schedule lately we tend to just grab. Not ideal but we do what we can.

Soccer practice is at my least favorite field. I've spent much time there, baseball, archery, flag football, soccer. There are about 10 other teams practicing at any given time. Parking sucks, the bathrooms are gross and coach requests we sit near where they practice- which means not in the car. On chemo week- lugging the chair from the parking lot out to the soccer field- feels like a lot. Today I'm lucky- a couple teams aren't practicing and I score a parking spot nearish the field.

 I appreciate that the coach is a volunteer and old Jen would jump in and help. Right now Jen is tired and would really like her youngest to play soccer because she loves soccer and the activity is good for her. But if coach keeps annoying Jen, Jen will pull child from this team and pay for lessons at the Kroc center. I need to look into that again. It's bad when the third person comes out. I want to scream- I am not THAT parent. I am engaged. I am present. That is all I can be right now is present- and it IS enough. Coach yells questions to parents. I purposely yell wrong answers. Perhaps he will be deterred by sheer ignorance and incompetence. Apparently not.

The girls are rewarded for their efforts with a grass fight. The field was finally mowed and there are huge piles of grass everywhere. We don't have fall per se, so this is as close as they get to mounds of leaves. I start to itch just watching them. But the sky fills with burnt orange and pinks and the sun ducks down behind the trees and the girls are giggling and I think, it isn't so bad.

Wednesday, September 23, 2015

Day 2 of 21. Or Tuesday.

Today is not any Tuesday. It is a Tuesday following chemo. Normally on Tuesdays I go to physical therapy, but not this Tuesday because my referral hasn't cleared yet. This Tuesday is also special because it is the boy-child's Birthday. 16 years ago today, I birthed my very first human.

There are so many emotions. My baby is 16. This is amazing. I managed to get a child through 16 whole years. Which in and of itself is an accomplishment. Throw in Li Fraumeni Syndrome and a BUNCH of luck and here we are.

I wake up to that kind of mildly nauseous, I just had chemo feeling that takes over. I am still tired but I see the door is cracked and a mop of red hair with two eyeballs is staring at me. Bella Boo. She's got a cold. She hid a bean burrito in the fridge and ate it and now her tummy doesn't feel good. Imagine that. I give her a magic antacid and tell her it should make her feel better soon. I think about rolling over but it's the boy's birthday- I promised him breakfast. He only breaks his vow of teenage hermitdom to his room for food and working out. And the occasional adult television show will also draw him to the couch for an undisclosed time. I think he enjoys how we yell at the girls every time they even peek down the hall. Do not engage the teen hermit, they will retreat if spoken directly to.

I get downstairs and 4 pairs of expectant eyeballs are on me. They would like to know why they were not informed about the boy getting to get to breakfast for his birthday. I tell them it is because it is not THEIR birthday. He and I started this day out together 16 years ago- we will today too. Plus- there is a pumpkin spice something waiting for me somewhere. They give me grumpy looks and head out the door. The boy is ready to go.

Once he is fastened into the car  with a seatbelt and it is in motion, I slowly try to communicate with the teen. One must proceed here with caution. I elicit a few non gruntorious responses, so in my mind- today is already a success. It only took bribery with a venti caramel macchiato and a tomato mozzarella panini.  I find myself making really oddball statements just to get a reaction. And I'll admit most are highly inappropriate. I grew up with oddball parents. Obviously it will turn out ok.

I get home and leisurely enjoy my pumpkin spiced breakfast. Phil asks me to please take it easy, don't do anything today, just relax. I love the idea of that and him to death for encouraging it. Just relax. Ha. So I check Facebook. Everyone is making themselves into Peanuts characters. I know what we are going to do today Ferb.  I make a Jen and Phil Peanuts.

I send it to Phil, just to make him smile. He responds- "what in the hell?"  

I defensively reply I was told to do nothing today and I was just following orders. Which is funny because I suck at following orders and he knows this. So really we are just playing with each other.  He spends the next 6 hours explaining that it was an impressed "what the hell" and not a what the F$#! are you doing with your time "what the hell". 

I then spend the next hour creating mini Mallory Peanuts, because it's funny. And I go back and forth because apparently the mini Peanut gallery is limited to about 6 skin shades and we are not. I go back and forth with Kiera- too dark, too red, too light. I figure it's summerish go darker. In between mini nuts, I answer emails and blog about chemo Monday and figure out a few posts for Living LFS. Lily is another enigma. She's got her own olivey tone- right between me and Phil. Closer to me by a skosh. Bella is easy and I giggle with Phillip. They have their shoes. I am so sad they don't have anything with freckles. It's time to pick up the girls from school. I've effectively done nothing. Well, stuff I like to do, nothing. 

The kids start homework and I work some more on my nuts. Hee. Hee. Lily comes down with something for me to sign and starts giggling at what I am doing. She says Kiera is too light. She helps me make hers. She apparently sees herself and Kiera as much browner than I do.  I text the finished copy to the minions. It results in a mad barrage of group text madness about the multitude of inaccuracies in their cartoon renderings. I feel compelled to point out it is a CARTOON. The next thing I know - I have all 4 kids gathered around- literally non stop from the Peanut gallery. We all finally agree that the CARTOON is a good enough depiction of our nutty little family. Good Grief. 
I check the clock, it's dinner time. Tuesdays are piano lessons for Phillip, Lily and Bella and ballet for Kiera. Phillip requested Taco Bell for his birthday dinner. Phil said he would be home in time to pick it up before piano. Phil texts he has been detained at work longer than expected and will probably not make it home before either lesson commences. The only one who is surprised by this is Phil. I hear a car out front and I look to see a desert themed pilot at my door. Any time someone unexpectedly stops by from work- my heart stops. He is delivering a big container of soup from another pilot- I give him a huge hug. Neglecting to remember that my day of nothing included not showering or brushing my teeth. Don't judge...I am so supremely grateful for this kindness. One, that he took the time to drop it off and that another busy friend took the time to think of us. Nothing usually sounds good to eat on chemo weeks(definitely NOT taco I am truly happy to have a nutritional alternative. Something that I can just grab.) We are so lucky to know so many wonderful people. 

 I grab Kiera and we head to ballet. She takes the teen/adult class where the littles used to do hip hop and ballet. I park in the parking lot, in the same spot I got the call from the nurse 3 years ago that my biopsy was breast cancer. I think of it every time we go. And then I think- well hell that was 3 years ago. 3 years ago I sat there not knowing how much time or what was around the bend- and here I am. Then I get out of the car and walk while Kiera does ballet. I watch for a bit when I'm done walking. I love that she is graceful and although her instructor is tough, she balances it with a lot of positive reinforcement. I see so much of me in Kiera sometime it aches. I wish I could just give her all the good and spare her the crazy- but I guess everything in moderation, right? 

It's 8:30 before we get home. The others have eaten. It's time for cake and presents. The boy isn't a huge fan of cake and every year requests Dr. Pepper floats and angel food cake. Nothing like plying your kids with caffeinated ice cream drinks at bedtime. I am tired. My bones hurt. I feel the throbbing in my ears that happens when I run around too much and get overtired. But I ignore it and sing Happy Birthday to my baby, who is 16. No longer a baby. Not quite a man. Like me, he cringes at the attention. Even if it's just family. It's a big day and just a Tuesday all at once. And as I fall into bed I am so grateful I felt good today. Our laughs around the computer and the table. Cramming what we can in. There is no room for insomnia tonight. I sleep. 

Tuesday, September 22, 2015

Day 1 of 21. Chemo Monday. A Day in the Life of Metastatic Breast Cancer.

My feed is already alive with Breast Cancer Awareness. We haven't even completed Childhood Cancer Awareness month yet and I am not the only one dreading Pinktober. The awareness of pink. Pink 5 hour energy, vitamins laced with carcinogens, donating about 5 cents per bottle to a breast cancer charity. We call that a self licking ice cream cone. Pink NFL, just ugh.

About 30% of breast cancers metastasize- spread to other parts of the body. There are certain places the obnoxious yet determined breast cancer cells like to get stuck- lungs, bones, liver, brain, but they can go ANYWHERE. Skin, yep. Bottom of a foot, sure why not? One of my kids explained to someone that I had lung cancer.  I have tumors in my lungs- but they are breast cancer tumors. I have brain tumors, but also breast cancer cells- well we think- we didn't actually biopsy them (THAT IS THE ONLY WAY TO KNOW FOR SURE) and well the whole brain surgery thing is pretty intense and knowing for sure didn't change this specific treatment(sometime it does) so we didn't do it.
Living Beyond Breast Cancer is a great org.
Making changes for those living with mets. 

Like childhood cancer, very little funds go towards metastatic breast cancer. Most funds go toward pink campaigns and finding out how to treat these early stage cancers. Not nearly enough goes towards finding out why some metastasize and some don't. Almost all women with metastatic breast cancer DIE from breast cancer or treatment related effects. And it is usually in less than 5 years. I'm in a wonderful group on Facebook that has long term survivors in it and that is amazingly helpful. It is important to know it is possible and kinda how others managed to balance cancering and living.  This is important for how my day went.

So Every 21 days I have chemo. I live in 3 week cycles. I plan things around when I know I will feel ok and try to limit activities on chemo week. Generally I just try to make sure I keep the status quo rolling. Unfortunately I never know when I will feel bad- so sometimes I just have to roll with the punches or sit back and realize- I feel pretty good. I'm gonna try something new this cycle- time allowing. I'm gonna take you along on the 3 week journey. I'm gonna try to post daily about kinda what I feel like- some may be mundane(please, please lets hope for mundane- we LIKE mundane- not nearly enough of that- it's highly underrated. )

A week and a half ago, from Atlanta, the husband texts me- is Monday chemo? He had been gone for 3 weeks(the entire last cycle) home for a week then gone for a week. I wanted normal- and I appreciate Murphy taking the time to jam it down my throat. But for those quick ones counting along at home- that's 5 weeks. Which was kinda a relief because those chemo Mondays sneak up pretty quick. Like every 21 days. I had one more week before I was due back at the pink palace.

That week goes fast. Sunday nights before are a mix of dread and snap yourself out of it kid- enjoy what time you have. This past Sunday we took the boy child out to dinner for his birthday because well- weeknights are hectic. He actually invited 3 friends. To come out to dinner. With us. It also gave Phil and I a chance to visit with his brother and sister and law and their boys- it was a great big family dinner. It was the perfect distraction with my favorite people.

I have issues with insomnia. Whether it's anxiety or chemo or hormone changes or cancer, I don't know. I'm learning my way around it. It's the constant battle of- if I don't get sleep, I'm going to feel worse and then I stress and can't get to sleep because my brain is on, so I read or listen to music until my brain is tired enough to try sleeping again.  So some mornings are difficult. Which is weird because I have always been a morning person. This Monday, I rolled over and it was 6:37. Which is 7 minutes past when we are supposed to be on the road. We try to open up the clinic or else it becomes a day long affair and I have to call in favors to have the girls picked up from school.

I shower, grab a banana, a huge flask of water, and my Phil and we are out the door. Lily's teacher lives down the street and is kind enough to grab the littles on her way to school for me. Kiera helps wrangle the girls. Phillip does not speak unless spoken to in the morning. He inherited that from his dad. The bigs are then on their own for getting to school. We sit in traffic. For an hour. Sometimes more. Sometimes less. but not usually less. If we take the HOV lane- we exit this way to Tripler...

We usually valet, when we are this early though we don't need to. Sometimes we bring Phillip with us for his appointments- we did not have him this past Monday.
We walk inside, to the left and go to Medical Specialties Clinic. It is right next to OB GYN. Which is sometimes hard. But also a reminder of new life. The waiting room is shared with the GI clinic and Infectious Diseases. Whoever decided Hematology/Oncology should share anything with Infectious Disease is not my favorite person. I love the weird window mural. I have no idea what's on the other side, I'm pretty sure it's a wall.  We check in at the desk and wait for Brenda to call me for Vitals. Sometimes Brenda isn't there and Un Suk takes vitals. Brenda and I have a better rapport. I actually look forward to seeing her.
If we are early enough, after the dreaded weighing in and vitals, we mosey down the hall to the chemo bay. When we are lucky we get the corner chair. We are lucky a lot. Early bird gets the corner chair. The corner chair is red. The surrounding walls have handprints from all the chemosabes who have finished chemo. Many sign their names and write thank yous or inspiration. I'm not sure how they handle forever chemo patients like me. I've never asked. It seem unlucky and presumptuous to ask.

Nurse Jacqui or Nurse Cindy then come over and access my port. They are awesome. It rarely hurts anymore. They draw blood from my port and hook me up to a saline drip while we wait for the lab to run my blood. It takes forever.  I apparently have alien blood. One time they actually called and said it came back as non human. We had to draw again. I suddenly became human. I've tried problem solving this- going in early to get blood draws, going to a local lab. It never is more efficient. So we just go and wait. I take a book, we play scrabble, if the signal is ok, I play on the inter webs. Phil usually kisses me and goes to get us coffee, or tea, or whatever sounds good. Pumpkin spice sounded good this time. There was no pumpkin spice. That was sad. But I will live. 
While Phil is procuring coffee, my oncologist usually walks by and stops to chat. There is NO privacy in the Bay, none. Everyone knows everyone's business. Some people pretend to look away, turn up their tvs or sleep. It is what it is. I'm not overly social, but I get very distracted by all the comings and goings. My onc wants to know how I've been. I tell him I'm not sleeping well and it freaks me out and the anxiety is pretty bad. See October is kind of ground zero for these latest adventures. October is 2 years since I've been on chemo. 2 years is also about the average life expectancy of someone with mets. No stress trying to beat that number or anything. So I mention I'm taking more ativan than I like. Oh and I need a new Physical therapy referral- shit now I look totally ADD.  My onc is mellow- which I love.  He asks if I'm seeing anyone - mental health wise. I must look offended because he back pedals and says- I only say this because they might be able to prescribe something more appropriate than I could. It's what they do. He gets me. I don't like taking stuff and I sure as hell don't need to add any appointments to my life, but well I also kinda like sleep and sometimes a healthy means to an end is a good plan. We make a plan for a referral. 

Phil is back with coffee. He also scheduled October appointments. Nurse Cindy checks on me- I ask about a notice I got (EOB-Explanation of Benefits) about generic Kadcyla vs Brand- according to the $$ there is a huge difference and I want to know if she's seen that. She was pretty sure there is no generic Kadcyla but checks for me. She hangs a second bag of fluid while we wait. When I get dehydrated, I feel icky and the chemo dehydrates me.  The chemo I'm on is not cheap. About $9500 per dose. I am worth it. Not sure Tricare thinks so. But I am. We hang out and my onc brings in a new patient. She has the shell shocked look you tend to get when you are told you have cancer. One of the long timers- who is in purple checked matching button down and shorts hugs her on his way in. Nurse Jacqui sits with her- but chemo bay is buzzing- machines are going off- they are perpetually short staffed.  The new patient doesn't know where to look. I get up and go sit next to her. We talk.  She doesn't know if she should call her husband, she didn't expect this, she was just a little tired, but not this.  Call him. Just call him, you aren't alone and he needs to be given the opportunity to help. But the kids, how do I tell the kids and the family...they will worry. But they will also help I tell her and take my advice- accept the help even if you don't want to. We chat, onc comes back- I shimmy back to my seat and give her a modicum of non existent privacy. 

A young man finishes his last chemo. He started a few months ago. He hugs everyone and is out the door. I feel that twinge again. I won't have that moment. New lady waves as she leaves. I feel for her and the whirlwind her life is about to become. One of the old timers rolls in. He predates me by A LOT. He doesn't look well. Well no shit- everyone there is not well- but that's the thing about cancer- it's sneaky. His face is gaunt. He does not feel well. You can tell. And I think I am not there either. And it makes me sad for him and way more introspective than I like to get in the chemo bay so I am relieved when Cindy brings by my magic meds. I really want them to keep working- generic or not. 
My bloodwork is always fine. It's 11:20. We've been here for over 3 hours. That's part of the frustration. BUT it is important to monitor it and we are really lucky to be by Tripler. I don't have to fight over insurance, usually. I don't get bills, usually. And I get good care. There are not a lot of perks of fancy cancer centers, but I'm banking on the perks I so far have been given- good competent care. This bag takes only a half an hour to run. I get two shots after that- one to keep my bones from breaking down and a B12- because I like it.  We pack up and head to the car. 

We usually grab a salad, enjoy a "date lunch" at the kitchen table before Phil runs off to begin the after school drill. I usually nap. Hospitals wear me out. I throw together 20 breakfast burritos for the kids this week so I don't have to hear every morning- what's for breakfast. Or if I do- there is an answer. Phil calls- the girls have student council, we forgot, he's early. Dang. I lay down for just a minute.   I hear the kids tiptoeing around with their complete lack of ability to be quiet. Phil is making dinner.  I get lots of hugs from the kids. That part is great.  Kids kind of drift in and out for dinner. It works out- we get a little time with all of them.  Even though I feel kinda ick, these moments are some of my favorite. The are my no rainbow without the rain kind of moments. 

We watch football and new shows. I am so tired but I know the second I get into bed, the insomnia hits. At 10, we call it good and go to bed. At 10:30 I am back downstairs reading, as to not disturb Phil. He comes and checks on me. I never know when he's flying so I just got in the habit of trying not to disturb him. Plus I get a little achey. Finally I feel sleepy and give sleep another try. This time I sleep. 

Sunday, September 13, 2015

Being Grand

My mom came to visit. Phil was gone for 3 weeks and as she does every time the road gets bumpy here-which is like always- mom said- do you need me to come help? Because as a mom and a grandma it is part of her DNA, part of her nature to care for us. She wants to help and I know she has been deprived of the many grandmotherly experiences due to our location.

As a mom of teens, I am ever more aware of how quickly the time passes and that you never ever stop being a parent. I appreciate this in my relationship with my mom. As a cancer mom, I am aware of the strain this puts on a heart. Her baby has cancer. As a cancering mom, I am aware of the strains of mortality and want to impart on my kids the important lessons. My mom still tries to impart lessons in me. Like slow down, take care of yourself more, let the silly stuff slide.  We all want the best for our kids and life's challenges shape how we go about this. I remember how much I wanted to make Lily better or at least things better for her. I know my mom wants to do the same for me.

She came, she slept on the couch, she played chauffeur, she cooked dinners, she took us out. She rearranged her schedule to stay when hurricanes threatened to extend Phil's trip. She ran around helping make sure we were prepared for impending doom. Because as a parent, that's really all we can do. You never know when the hurricane will hit- you do the best you can to be prepared and like parenting and life- your preparations may be in vain because the storm may not hit or it may wipe out all of your prep so it didn't matter. But it does matter.

We are nurturers. We are fixers. We create. We rebuild. We carry on. We enjoy the calm because we've weathered the storms. There are certain things you can prepare for. And just about everyone will tell you that prep helps but to go through something, to have the experience - is always something that no prep can prepare you for. Childbirth. Cancer. Hurricanes. There is a reason they are called grand-parents. It's the accumulated wealth of experience they harbor.

I worry that I won't get that experience. To be a grand. I want my kids to have whatever happily ever after they dream of. Out of 4 of them- I would imagine there will be grandchildren. It's tricky with LFS. Many mutants take alternative routes for parenting- IVF to select the non mutant embryos, adoption, or what I call the faith leap. Mine was a bit of a denial leap. Some call it irresponsible. I call it life. Everyone has a history. I knew mine included cancer. Ultimately parenting is a great big game of roulette. Genetics are only one part of the great big mixing bowl of potentially hazardous outcomes. I mean kids lick paint, eat poop, break things, like bones, couches, hearts. They get sick, they recover. Sometimes they don't. My brother got sick. I didn't. For 36 years. He only had 16. How do you quantify a life? How do you say those years aren't worth it? You just don't know until you try.  They carry scars from the accidents we couldn't prevent. By heredity or through living. As do we. I wouldn't ever choose LFS for them. But I would never choose against them. It's not black and white. It's personal. I think of the young women and men who had the option to bear children taken from them because they had cancer. I worry for my children. And I am relieved I didn't have pressure to have or not have kids. By chance or design, I took the path and travelled it.

I was just discussing with a friend how we only get what we can handle and well we'd kinda like the bar to be set a little lower. At a benefit for Living LFS, a non profit started with some dear mutant friends, I handed out brochures with information about LFS. A young boy read through it and followed me around asking questions. It was pretty profound until he had collected his information, looked at me and said- So why don't they just stop having kids so they don't pass it along? It would stop there. And so did my heart.

It certainly would. And I don't want to live in THAT world. I'm not saying I wish LFS on anyone. I don't want cancer. I don't want my kids to have cancer. I don't want ANY kids to have cancer. ever. In life there are NO guarantees.  People without LFS get hit with cancer all the time. There are dozens of other "hereditary" cancer syndromes. We will find out more. 50% of cancerous tumors have mutated TP53. The same mutation I have in all my cells. We are a small but important group to this war on cancer. There are SO many things that could and do go wrong. But without the disasters, we lose the perspective that was forced on me and other mutants. That life is unpredictable and precious. That you can't always choose who you love. You just have to love them with all you got for the time you have. You can't always FIX it. You can prepare all you want and sometimes luck just isn't on your side. Find faith in God, or love, or friendship or family. Find what gets you through because there will be tough times.

SO I took a lesson from my mom. Today I snuggled on the couch with Bella. I took Phillip for coffee, we talked about science and medicine and biology. Kiera and I cleaned the kitchen and listened to her favorite songs- for the 300th time. And Lily and I accomplished 2 pages in a scrapbook. And it was grand. I can't imagine a world without a Phillip, or a Kiera or a Lily or a Bella. Mutated DNA and all. We are not perfect. We may not live forever but for now we have these moments. And they are Grand.

Thursday, September 10, 2015

Making It Count

Yesterday I was at lunch with a couple of friends. One of whom is now Phil's boss's wife. It wasn't strange because like most of the ladies I've been fortunate enough to be associated with through the Air Force and Air National Guard, we are pretty awesome by nature. We don't wear our husband's rank but we gladly step up to the plate to make things run better, feel homier, supportive and fun. And I use "we" in the loosest association possible as I am one of the wives who is MIA. Of course this woman, whose husband is now never home has the added "responsibility" of caring for all the wives under his command. I use the term responsibility with the fun quotes because most of such responsibilities are not even implied, they are self imposed. It is tradition based on need. A woman who marries into this lifestyle generally knows what she is getting into, or learns pretty quickly. When I was a new wife there was discussion as to whether or not fiance's should be included in wifely socials. As a newbie with a relatively short affianced period(less than 24 hours...really no time for socials or much else), I was hesitant to put my 2 cents in but felt that these young women should really know what they were getting into. I married my high school sweetheart who went to the Air Force Academy, so I had already been conditioned to accept a lot of bull shit- let's give these girls a fighting chance. Plus we knew these young guys- we were a gaggle of protective sisters- the trial period was also an interview.

So my friend casually mentions- I don't seem to be getting your blog notifications anymore. I don't know if there's a problem....

Oh yeah. The problem is me. My brain and the amount of emotional energy I am willing to expend on making a pile of shit palatable.  My one rule when I started blogging was I would try and find the positive side- I didn't want to be the debbie downer. Because sometimes you get stuck down there. And a lot of the stuff you go through with cancer and kids and the military lifestyle takes a fair amount of effort to put a positive spin on. Some days smiling is a chore and the allotted energy expenditure of the day. I have to make it count.

My friend Cheryl calls and checks in on me all the time. And we talk about goofy normal things. Sometimes we talk about serious things, or she asks cancer advice. She doesn't have cancer, but unfortunately we don't run in too many circles that haven't been hit by cancer.  I guess some consider me an authority on the subject. Not to toot my own tumors, but I do have some experience in the field. But I try not to have that be the only experience that counts.

Cheryl always waits for a lull in the conversation to ask how I am doing. The no bullshit, honest to goodness truth. She is one of my 5 religious blog readers. And one of the few friends who isn't afraid to call to check on me.  We have known each other for over a decade(that can't be right- yep- yep it is). She is one of those friends who I know if I needed anything, would be here as fast as she could manage it. She speaks her mind whether it's popular or not and as someone who struggles with small talk- I love this. She also pays attention. She kindly points out I haven't updated the blog in months and while I might be wallowing in cancer or whatever, she reminds me others out there are actually paying attention. Sometimes I forget. When you are in the throws, you lose touch. You just do.  I try to appreciate that everyone is busy. Everyone has their battles and that I am not always front and center in their minds and that's ok because I really don't like being front and center. She also reminds me that they care and that my journey is being followed and I have some follow up to do.  Well shit- this quick post is already out of it's mind- see how it happens...

Living with cancer pretty much sucks. I try to find the positive in every little thing because I know it is going to get harder. I try to find the positive because I NEED it.  It is difficult to not get bitter. It takes effort. You see the never ending parade of cancer-fight-strength isms every where.  Cure. Strong. Somehow the world equates cancer with beautiful strong people because those beautiful strong people are the poster children. Sometimes it's easy to paste on the smile for a minute. Sometimes it is not.  I do know that people do not want to be around negative nellies. And if I was being real about it-cancer by nature is pretty fricken negative. But many do not want to hear it. You have hair- you must be in remission. You beat cancer.

I have hair. Having hair in no way is an indication of how much cancer is in my body, or anyone's body. I looked perfectly healthy when I had dozens of tumors in my lungs and bones. I looked healthy when I had a sarcoma in my arm and 3 tumors in my breast.  When I completely responded to chemo- I looked like hell. Actually I looked pretty ok- just bald. And the plus side was that I lost like 30 pounds. Yes that is sad. I actually needed to lose that weight. But again- didn't really look healthy. Was I healthy? Oh I love those medical questionnaire questions-- how would you rate your overall health? Well overall- if you take away the dozens of reckless tumors that are threatening my ability to breathe, balance, walk, think- I'm in excellent health- well maybe just good. Does that count?

Cancer comes back. Cancer is predictably unpredictable. Cancer is mean and strong and works around "conventional treatments". I do not believe there is a cure for cancer, I believe it can be managed. Chemotherapy is toxic. It has toxic effects that can lead to organ failure. The guiding principle in cancer treatments right now is to kill more of the cancer than good cells before the body calls it quits.  Alternative medicine does not cure cancer either. If it did- THERE WOULD BE NO CANCER.  The way we look at cancer is wrong and there is a push for personalized medicine and genomics and that is truly important to how people will survive with cancer.  Since I have Li-Fraumeni Syndrome, I never thought for a second I would be immune to cancer. I knew it was coming for me. When it attacked Lily monkey- well damn- I should have seen that coming. Bastard. But this language about fighting cancer. It's a fight. But it's also a dance. It's also an agreement between host and disease sometimes to mutually respect the other's will to live. I have yet to meet someone with cancer who didn't want to be cured of it. But the mindset changes when there is no cure. You can either beat your head against the curative wall or begin looking for another way around it. Will my will outlast cancer? No idea. I could die of heart failure- technically a draw right- I didn't give up, my cancer didn't give do you count that?

And what if you just say I am done fighting? Not quitting, just not fighting. Plugging the chemo in day after day, week after week because they side effects aren't always manageable. Cheryl- stop panicking this is hypothetical- I'm not stopping treatment. Because chemo sometimes is only to hold cancer off. I have mets. metastasis. I am  responding to treatment. But as I near the 9 month point of being on this chemo- I know that I am now in the zone where it tends to stop working.  I will not be cured. I will continue getting this drug every 3 weeks until I have proof that it is no longer keeping my cancer at bay.  Because my cancer is not active on scans, doesn't mean it is not THERE. SO if I stop chemo, it will become active and I might not be able to stomp it back. It might find a way to work around the chemo anyways.  Others need to view it as win/loss/ here/ gone. I have seen many many people absolutely shattered when cancer comes back. "But I thought I was cured. I thought I was in remission. I didn't know it could come back." I look at it not as if it will come back but when. This knowledge also helps me guide treatment and choose the most livable options. I know for a fact many people would choose differently if they knew the outcome. That is one of the really frustrating bits- no way to know. I play the what if game. What can I live with comes back? If it doesn't? I didn't reconstruct because in this what if game- what if it comes back? Did I want to have spent months on surgery during that time? No- I wanted that time to count.  What if it didn't come back? Was I ok being the uniboober? Dang skippy and relieved I didn't reconstruct at this point.  That's me. I know women NEED to reconstruct to feel whole and that's ok. Others NEED to fight and win and count every chemo, cancer, treatment, hour in the chair. Cheryl yelled at me because I by my quest for normal, deprived her and obviously some of you of celebrating WITH me.  So I promised to be better about checking in and updating and finding the things to celebrate. I have yet to manage to schedule a haircut- but I have amazing curls. They are messy and crazy and pretty fricken cool. Each time I get to scrunch them or I get a comment on how great they are- its a mini celebration.

And so these are some of the things that go through my mind. And it's messy like my hair. And switches with the wind. And I will try to be better about sharing some of the crazy shenanigans my kids get into. Because that's where most of my time and effort is and that is what counts.

Lily Kay Monkey

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