Finding Time

As a mom, I feel the one of my main goals has always been to find the time. Find the time for fun stuff through the mundane but necessary. Find time for hugs when arms are loaded with laundry. Find time for people at the expense of self. Finding time for me when it feels like time is running out. 

Cancer robs you of many many things. The first thing it robs you of is health. People look at cancer different ways- sometimes cancer is seen as a warning, time to clean up the system and reboot. Some times it feels like a death sentence, something to be dealt with over and over until the pardons don't come through. Sometimes it is a life sentence- a way of living after you learn what is worth living for. 

Cancer robs you of the ability to plan. It is not merely indecision. It is living day to day not knowing what tomorrow holds. It is knowing that at the last minute you will be forced to change plans for events that are out of your control that need to be dealt with. It is making tough decisions knowing that those decisions will occupy your schedule to keep you here. To keep you alive. 

Cancer robs you of time. Time for appointments. Time for surgeries. Time for chemo. All take the place of things like time for taking the kids to the beach, time for fun,  time for cleaning.The absolute needs go first. More often than not there is not enough time left over for wants- unless you find time. 

This weekend- like any other weekend- filled with activities- we go from a soccer game to a production(Schoolhouse Rock this time) to another production-to squeezing in a pumpkin patch visit to another production to what the heck happened to the weekend. Relief flooded over me when Phil said he had Monday off. OFF. There are no off days in cancer world and I haven't even decided on treatment yet. These hectic days will be a fond memory of quiet times in a few weeks. But watching the girls do what they love- makes me happy. Listening to Phillip play the piano while I try to pick up the house makes me happy. Being with Phil makes me happy. Even if it's running around and trying to squeeze everything in.


So Monday began with a plan- our traditional off Monday morning "date" walk to starbucks. I've missed it. I launch into discussion of treatment research

and ideas and my thoughts. Not the traditional walk and talk and laugh, but something we have to find time for. I know that the treatment decision has been weighing heavily on me. It’s weighing heavily on Phil. I also know that I feel bad that doctor’s appointments occupied the entire week. It not only robbed me of fun time but them too. I hate the collateral damage.  Phil and I discuss what needs to be done today and what we would like to do. He wants to go to a movie. The kids want to take out Halloween decorations. I need to clean. I promised them we would do it over break and we are officially on the holiday day off after break. 

We get home and tell the kids the plan- in order to do Halloween decorations- the house has to be picked up. I start by a bookshelf- Phil plays the trailer to Gravity and asks the kids who wants to go see it. Everybody does- so they all start picking up. I’m not sure it’s the best movie right now. I call my neighbors and get their official movie review. She said it’s really not too scary- the kids are more likely to be bored that it kinda preys on the adult theme of suffocating in the vastness of space. I hang up and feel the suffocation of decisions, of the cleaning, of the trying to squeeze in fun which doesn’t sound fun. And like that -I can’t breathe. I’m sitting in a puddle on the floor- kids have scattered and I am sobbing and not breathing. Phil looks confused. I can’t watch a movie about suffocating in space right now- I just can’t and the house is filthy and there is stuff everywhere and I can’t bring more decorations into the house in this state.  He smiles- who cares- the cobwebs are authentic. And I love him and want to smack him with a very large cobweb.

 He starts leafing through a laundry basket filled with papers and odds and ends that has been sitting there for months. Every week I think I’ll get to it. But then I had to get a MRI and a PET and a BIOPSY and a PORT and I really don’t feel like organizing my desk. But he knows I want to do it but don’t want to do it and definitely don’t want him to do it. He’s pushing my buttons. He also knows that when I get upset I clean and I’m obviously upset and he’s showing me the path. In an hour we’ve tackled the basket- and the front room is feeling livable again. He gets down the Halloween decorations from the rafters. It’s pretty much dinner time. And like that time has gotten away from me again. Yet the kids squeal over the Halloween books and help put everything out and even though we didn’t get to a movie- we did accomplish that. Sometimes time is funny that way.  There isn’t enough time to do everything- so you just have to decide what it is you need to do. And in that process everyone may not get what they want, but you might sometimes find- what you want most is to get what you need. And when you are really lucky like me- you have someone wonderful who takes the time to make it happen.

I'm allergic to Tripler

The evening of the port installation, Phil performed a routine wound check. I hate that this is even a thing in our house. We have site checks, blood sugar checks, hormone checks, medicine checks. Checklists keep us running. This wound check revealed a bump- not on the incision but below the supposedly nonreactive dermabond. I don't know if you remember, I'm allergic to everything. When I had one lump removed- I reacted to the steristrips- which is odd because I had 4 c-sections and no problems with them. I was allergic to adhesive- had 2 wounds dehisce due to inflammation. I was allergic to every brand of tape they tried in the week after. When I had my mastectomy- I was allergic to the latex in the ace wrap- a perfectly mummified rash wherever it touched as well as the blistery welts that snaked along my side wherever the drain tubing touched. Then there was the adhesive on the tubing. It was not fun.  Phil knows my tendency to react and his dressing change skills now match his undressing skills.  I would rather he check the oil- the perimeter- the hoses- the pipes- what have you-not my tiny pustule ridden chest anymore. I'm pretty sure that isn't in the marriage contract. Yet he does it because at some point he decided he married up with me and I conveniently didn't correct him. Survival of the fittest- adapting- that means the best me is only available with him. That and he trapped me with a master plan- but that's a story for another time.

The next morning I wake up to a couple dozen more little bumps and some redness- fortunately not at the incision site- but a reaction is brewing. Phil stands there tapping his foot. You need to call. But I don't WANNA call. I zap a picture of my rash to my favorite mutant wound watch team.  We are headed into a 3 day weekend- as much as I don't want to spend yet another day waiting around tripler- I'd rather it not be in the ER- so I call the Men in Black suite and they have me come right in to IR. The doc scrunches up his face- you really DO react to everything, don't you? I don't even know what was THERE.

Awesome- because if we knew- we could avoid it. It doesn't seem to be the dermabond, because other areas are fine, but it looks like on one posterior edge-the dermabond sealed something in and my skin was not happy about it. The picker in me really wanted to attack each an every little pustule- but the rational person knows that is a baaaad idea. How do you do with Benadryl? He asks. Ok- it makes me sleepy and anxious all at the same time- that's pretty normal these days- so fine. How about Hydrocortisone?  Oral or topical, I ask. He looks at me funny- have they given you oral steroids before for reactions?  Oh no- I say but my daughter is on them so that's the type we normally deal with.   So I walk out of there with a script for benadryl and hydrocortisone cream. Mind you- I have a collection of both at home. I had pretty much decided to use the home supply and was headed out the door when I bump into Phil who obviously is the best husband ever- turned around on his way into work to be there with me. He decided we should use his in uniform benefits at the pharmacy- don't get to do THAT often and maybe I might be getting like 1000% Hydrocortisone cream or something. That would definitely be higher than the 1-3% at home. My chest itches.  I think mostly I'm just allergic to Tripler.

We wait and wait. I ponder how this is the last day of fall break and I have done nothing fun with the kids. They have mostly been unsupervised with the exception of my neighbor and sister in law checking in on them. I know they have loved every minute of playing with their little cousins.  Everything happens for a reason- months ago when we found out Phil's brother and his family were moving here- we were beyond excited. Excited that the kids could know their cousins. Excited for Friday nights and watching football games together and hanging out. Excited to see the little ones grow. Excited to reap the rewards of my sister in law's cooking talents. Excited for family. But as a good friend always says- families are messy. And the week they arrived on island was the week ours just got a whole lot messier. I texted her that morning as I ran out the door and she was gonna look in on the kids for me . She stayed with them when I got the port and I feel so lucky that Phil's brother landed such a wonderful woman and that we haven't managed to scare her off yet.  Those Mallory men- all seem to marry up. I never had sisters- but truly enjoy my sister in laws, or is it sisters in law? Either way- love them.

 I am not feeling the benefit of the in uniform service at the pharmacy. Especially when we finally procure our rx- 1% cream and regular benadryl. But I have spent another hot date hour at Tripler with my handsome man in uniform so - I'll take what I can get and hopefully get rid of this rash so I once again can show Phil how he married up. No wonder he came to check on me- he probably knew I would walk right out of there without the prescription. Love that guy. Either way- the rash is fading- morale is rebounding. One small victory at a time.

Porterized

It's been a long week. And it's Wednesday. Monday was my appointment with Interventional Radiology. It's one of those departments that you have no idea exists until you need it.  It's a very Men in Black, Agents of SHIELD operation as when they schedule your appointment the instructions are this:

Go to 6th foor Mountainside. There will be a phone on the wall outside of the Intensive Care Waiting room. Dial this number and wait for further instructions.

That's where the sexy spy like feel ends because we are instructed to take a seat in the waiting room. This waiting room brings back fond memories(sarcastic face). The Mallory family collectively logged many quality hours in this room. This room was the site of the inaugural "the chairs here suck" campaign spearheaded by my mother in law. 

The good news is that the chairs were upgraded shortly after that campaign and now they recline and everything. But I digress. We are retrieved by a young gowned man who directs us to yet another secret door around the corner which opens to...duh duh duh- an exam room. It was overly anticlimactic. The Interventional Radiologist comes right in and apologizes profusely for us having to be here, read up on my file yada yada. I like him but he seems young. He starts talking about Li Fraumeni Syndrome and how he read up in it and it seems vaguely familiar from when he was back in school like 15 years ago. Now I feel old and not in the good- I made it to old age kinda way. So in today's medical education - Interventional Radiology(IR) is essentially an offshoot of surgery and is also known as surgical radiology. They are the manpower and brains behind procedures such as stents and ports. With small tubes and catheters- they use Xrays, CTs and ultasound to guide small wires and catheters through veins- avoiding major surgery.

 Ports(or medi port, or portacath) are a fact of life for anyone who has a chronic medical condition requiring blood draws or infusions. So when the doc started the basic background- in the interest of efficiency and full disclosure- I let him know we were familiar with ports- that our daughter had one for her chemo. He looked down- apparently that fun tidbit was not in the chart.  He shows us the mechanism which is very metal looking. This is a concern because I seem to react to things- not just emotionally but metals- adhesives- latex. He assures us it's completely non reactive, wont set off metal detectors, mris or anything- the kids can throw magnets at me all they like- they wont stick. Good enough. I ask if it's a power port- one of my good mutant friends said make sure it's a power port. It will be a power port. It's very Ironman. It's metalish, triangular with a round squooshy part the needle will go in when I decide which super mutant life saving regimen of toxicity I will have them pump into me.

We schedule the appointment for Wednesday. It all seems to be moving fast.  I see the fall break slipping away. I know it needs to be done, there is no good time- but it kills me the kids are off this week and I had so many things I wanted to do with them for fun and now it all seemed to be going up in a puff of glitter. That is cancer. But I try to remember- doing this is to make sure next fall break won't be a complete bummer.

Mind you the 4 kids had dentist appointments at the same time I had this appointment. The good thing about having a dentist nearby is that I made a call to the receptionist and she said she would make sure they were taken care of. In our world that means no xrays. In a family with cancer syndrome known for nasty brain tumors, no I don't think xraying your nugget every 6 months is a good idea. Dental hygiene should not include regular irradiation that could bounce around ones brain and that is another topic for another time. But yes it bothers me that my kids are already taking themselves to dentist appointments. But this is our reality. They were briefed on route, expectations and instructed to text us at every checkpoint. They did.

Today went well. The nurse took a couple tries to get the IV in- one of the main reasons a port will be a necessity- due to my other surgeries I'm down to one good side. I'm already nonstandard in that my port is on my left- it's usually put on the right. But- as the doc put it- since my right side is fairly devastated- lets go with the left. I've always wanted to be devastating. Well there you go.  The procedure is done under conscious sedation- which means happy drugs mixed with pain control. It also means shorter recovery and for me a crazy case of the munchies afterwards. I felt the tugging and was sort of consciously aware but not really.  I apparently have started to develop a tolerance to versed- the happiest of happy juice- but then again I have been making weekly sedation a habit here in the past month or so. Hopefully we can change that.

I am beyond thankful to have my sister in law here who made sure on day 3 of fall break- the children did not spend yet another entire day unsupervised.  Lily hugs me gingerly. I am never sure how much she remembers- but I know this brings back feelings for her.  She wants to see it. I pull the neck of my shirt over and her face goes white. She remembers. I hate that she remembers but she is my inspiration. I remember when she was diagnosed and everything was so bleak and every report screamed poor prognosis at me. But for every poor prognosis, there is one that can defy the odds. She is that one. Maybe just maybe- other than her Super mutant genes- maybe she gets that from her momma too.

Taking an Emotional Knee

Sometimes you just have to take a knee. In Catholicism, you take a knee to show reverence to the Father, Son and Holy Ghost. In yoga, resting on your knees is referred to as the hero's pose. In football, taking a knee is a strategic move. It is move that protects your position and generally works by allowing time to run out, thus ensuring a win. After a particular rough few weeks, my husband again found a way to use football as a metaphor for our challenges. It was time to take an emotional knee.

We shuttled from appointment to appointment in the haze- purposely not telling people what's going on until there was something definite to tell. A comfortable numbness gets you through. My girlfriends call it going underground. Some people thrive off of the support of others and their first wish when the game goes south is to call in the reserves. Some people hold steadfast and will run plays into the ground until there is no other option or they are pulled out of the game. We are those people. We know it's a team effort and it's not that we don't want support- we need it- we just never know how much we might need it later and don't want to use up our reserves. In the process, our own reserves get taxed.

The kids knew something was wrong. Lily reads the appointments off the calendar- purposely scratched in my own shorthand for that very reason.  Kiera hovers just out of sight and listens. Bella seems oblivious but knows more than she'll let on. Phillip is stoic, quiet, helpful. He internalizes everything. I see myself in each of them. I knew I would have to tell them. It is a tough play to try and call. You run it too early and you risk not being ready. You run it too late and it could get picked up or picked off. I know from experience, there is never a good time or a right time to tell someone you have cancer. The right time is when you have cried enough tears and cleared that clump in your throat enough to reasonably predict you can get through it. The only reasonable expectation is that- to just get through it.

It was dinner time. I reached the point that I felt like I was hiding something from them and it was no longer a healthy evasion. I think that's the tough part in parenting- we worry, we predict and try to prepare for things there are no game plans for. There is no route you can run that will bypass the cancerback in this game. It always frustrated the hell out of me in football when they run right up the middle when there is clearly no hole. Don't they see there is no hole? Phil laughs- one at the double entendre and two because he actually HAS extensive football knowledge of which he tries to share with me- He's running the play called, the hole should be there- it depends on how well the defense reads the play. You can say that again. Why doesn't he just go around? He smiles- he can't see what's over there- he's running the route he's supposed to- everyone has a job- if they all do their jobs- he will get through. Ah the metaphors abound. Immune defensive strategy, parenting strategy- emotional strategy- oh where to begin?

I simply asked the kids what they knew was going on. Kiera was first to offer that we were checking to see what was wrong with my lungs. I nodded. We have been doing lots of tests and we know what is wrong with my lungs, my breast cancer is back.  Which side? Kiera asks.  It's not in my breast this time. It's in my lungs. But you can't cut those out! She squeals- you can't live without them.  Our eyes collectively fill with the sad realization. We can't do surgery. Lily looks confused- what do you do if you can't have surgery? I remind her of all the medicines she had to take- and that medicine made her cancer stay away- we are going to see if there are medicines that will help my cancer stay where it is.  Phillip looks horrified. Every last bit of energy he has goes to keeping tears from coming to his eyes.  Bella begins her song- I don't want you to die. If you die I will have to die and that will take like a whole week of not eating.  I think the word die happened about 85 more times while she was talking- the rest of the kids emotionally trying to buffer out the sound of the word non of us wants to hear. Lily falls in to me. Kiera falls into me. The other 2 follow and like that we are a single unit- the horror being pushed away by a bubble of love. Everyone settles back into their seats. I ask Lily if she remembers being sick. She says yes. I let them know that mommy might have to get sick to get better. Everyone dies but right now we are not talking about dying-not yet- there is too much living that we need to focus on. I need them to focus on living. Lily puts her head down. Quietly she says- but I don't want a new mommy.  So I tell her that no one ever gets to know how long they get to live. If something happens to me, I want daddy to be happy and find love. Just as we love all of them, daddy deserves to be happy. And she gets angry and shakes her curls and yells No- you are daddy's one true love. That's not how it works. I could never love another mommy as much as you. It is in these moments in time that you can feel utter failure and success simultaneously. We talked about death. We talked about living. We talked being afraid. We talked about fighting. But we live with love.

The ages and genders of kids affect how they view the world around them. A 7 year old cannot process the permanence of death. Bella sat quietly, cutting and drawing. Awhile later she brings me a scroll rolled up with a bird attached.  I will send letters to you on a pigeon, forever. I will always love you.

Lily sits next to me. She is not your average 8 year old. She has seen sickness, she felt it. She knows she almost died and she knows that it is a possibility. She knows there is no coming back from death. She knows a pigeon will not be able to reach heaven. She chooses to live in the present and collect her due in hugs and kisses. The next day after school she announces a list of people who want me to get better. I envision Lily skipping down the halls, each bouncy curl attacking every passerby with the announcement that my mom has cancer.  That is how she deals- she is rallying her support system and she is calling in every last reserve. She needs them. 

Kiera is scarce. She goes to friends' houses. She feels selfish because she is worried what this means for her then feels guilty so she runs away. She is trying not to feel. Everything is magnified in the tween world- as is this. She too needs her social circle and again I understand.

Phillip quietly goes about chores. He knows I need help and he is doing what he can. He doesn't know what to say. All he can do is hug me every time he passes by.  Prior to this week I can count the volunteered hugs during his teen years on one hand- we are clearly making up for lost time. He lets the girls clear out and stands in front of me. Is it small non small cell lung cancer? He asks. Oh god, he is my child. Have you been researching it?  He nods. It's not lung cancer buddy. I know it's confusing. It is in my lungs- but it came from the breast cancer and cancer is classified by where it comes from not where is is growing. What stage is it?  I know what he read. I know what the answer is and how he's going to take it. Any cancer that spreads from where it started is automatically a stage IV. He falls into me and I wish I could zap all the worry and the fear. Instead I tell him I know how he is feeling. I was his age when my brother Bob was diagnosed with a brain tumor. I know it is scary. There are no good answers. I don't know what the future holds- I just know that I will fight for him and his sisters until there is nothing else I can do. I was only a little older than he is now when my dad was diagnosed with a brain tumor. I told him I remembered those feelings and how horrible it was. I know what it's like to hear your parent has cancer and that's why it was so hard for me to tell him. I told him there were so many times when I was his age that I had really hard times relating to people. I lost friends because hair and clothes and petty teen things mean nothing when you watch someone you love fight for their life. Drama is something for the stage- not something to live with- and teenage girls live for drama. I didn't have a lot of friends because I avoided the drama. His dad was my best friend and always has been. And no matter what- we were all going to be fine. I also told him what my mom and I used to refer to as Mental Health Days are now called Taking an Emotional Knee. A TEK day. It happens. The rule is come to us and talk about it and don't make a habit of it- at some point you have to get back out there are fulfill your responsibilities. But for today- I understand the need to take a knee. It might just give us the position we need to win.

The Painful Side of Breast Cancer Awareness

Breast cancer awareness can be a pervasive sales tactic.  The month of October everyone from Kellogg's to Komen to the NFL pinkwash themselves under the guise of breast cancer awareness. Cereal is pink. Ribbons are everywhere. I can't even sit down to watch a brutal competitive game of  football without having pink gloves, pink towels, and pink stories about survivors and hope floating across the tv. DO your research, just because a product is pink does not mean buying it will do any good for breast cancer research, treatment or survivors.  Awareness increases awareness. Awareness can help early detection. Awareness does not cure. As the government shuts down- so do many vital research projects, treatments, and clinical trials. The shutdown could mean life or death for certain people.

I am all for awareness. This month- many women might get more knowledge on how to examine their breasts through Monthly Self Breast Exam(BSE).  I know enough breast cancer survivors to complete a couple of teams to play a game on an NFL field. We wouldn't wear pink. Husbands might gain a little knowledge and be more supportive through this campaign. Heck everyone needs a back up quarterback- partners make great breast buddies.  One of my good friends made a video on how to do BSE- if you have any questions- please check it out. No nudity- just good information. Breast Self Exam with Trishia the Great


I found my lump almost 2 years ago. It was a thickening. Not round like a pea or grape. It was oblong and I could feel it when I laid on my side. It became an obsession- every night I would roll and see if it was still there. It was. One night Phil rolled over and felt where I was feeling- silently- mostly probably wondering in his ever selfless way if he could be of any assistance in the breast care and comfort department. He loves that part of his job. The silence became a sigh. The heaviness descended. I could no longer worry in my quiet place- it suddenly became a very real problem. My physician could not feel it. I got referred to an oncologist. The oncologist could not feel it. This is why breast self exam is important.  It was not a small lump. No one will notice changes in your body like you. Not just breasts- lumps, bumps, coughs- aches. They individually were less than 3 centimeters- but they were close together- making the oblong shape. MRI revealed a third tumor at a another part of the same breast. They came on fast and they were angry. Most of that is due to my mutant status. It was terrifying. The first October after my mastectomy sucked. I hated the awareness. I was aware. Painfully, lopsidedly aware. Grateful to be alive- angry at the money and resources going into awareness that could be helping find a cure or at least a treatment that would keep it in check. Angry that so many women face this and the treatments still often times fall short.

It is ironic to me that on eve of Breast Cancer Awareness Month, I get the call to confirm that my breast cancer is back. It is in my lungs and possibly bones. There are no surgical options. We have to wait for pathology to see what the hormones are and what the markers of the tumor are to see if there are any treatments. By treatment, in the world of metastatic disease- we mean meds that will help me live with cancer, to keep it at bay for as long as possible. And in my weird mutant world- this is good news. This is the better of the options- because there are options. If it was sarcoma- there would be few options. My mutant girlfriends rallied and only in our select club would you ever have a band of women so heartily praying and wishing for breast cancer. Because like me- they know the alternative is worse.

I am painfully aware of breast cancer as are the other survivors. I am aware of the pain in what used to be my breast and every stinkin day wonder if the cancer is back or if it's a surgical remnant. This month I am no longer wondering. I am facing the fear of the unknowns. Will treatment hold it off, can I keep myself healthy, can I get everything done?  How will I tell the kids? How do I tell family and friends? I am facing basic questions from friends and acquaintances which help me realize that the awareness campaigns too have fallen way short. I am not your average breast cancer fighter- but I am no different. Every damn one of us wants more than anything to live. We want to beat the odds- the select few who win. We will do what it takes to achieve that goal- that touchdown. It is a game. The rules change, the players change- the coaches change. The only constant is what you believe. The rest can change. Let it. One of those changes could be that game winner. I believe awareness will not cure cancer. But I do believe there is someone out there right now who is affected by this nonsense and maybe just take that little bit of awareness might turn the tides of this game. And if that is truly the case, then awareness may in fact be priceless.

GDMFCSSOB. I don't Give a Damn about the Government Shutdown.

My facebook is blowing up with people panicking about the goverment shutdown. Literally panicking. Stocking up on food- voicing opinion-complaining up a flipping storm. I get it. I get your angst. It really flipping sucks when a system shuts down. It's frustrating when someone who's supposed to do their job- doesn't. Uncertainty is terrifying. But as a very dear friend on a very different topic told me last week- pull on your fucking big girl panties and buckle up.

I haven't heard anything about the government shutdown. I live in a cocoon. A nice safe cocoon of medicated calm. It makes sense that a couple weeks ago, the bill master and income making half of my life asked that all future expenses go on the charge card for the foreseeable future. I figured it was because he is being cautious and my scans were pending. Perhaps I need to look at the news more.

I can't tell you when this started. It has been a typhoon in a roller coaster in hurricane in a 500 year flood. A couple months ago I felt chest pain. I asked around- all completely normal following the chopping off of one's breast. Nerves come back- the resulting sensation is this burning, lightening firey moment that catches you breath, then passes. Then it pops up again. Not fun- but one can live with it. We got Lily's all clear, finished the kids scans- also clear. I was emotionally exhausted. Then we went on vacation, I had a break in working out- school chaos started, Pinkalicious was in full force- I was exhausted. I felt a little short of breath when I worked out and had a little cough. But we have the air on- I always get allergies and who knows what crap is living in our air vents.

Then one day I get a notice from a fellow mutant. Her cancer is back and angry. Another mutant friend online asked about breast pain. Another mutant in our support group's lung cancer was back. Oh God Damn it the Neon sign hit me. I took a deep breath, followed by a cough- put on my workout clothes and let my husband lead us in a typical workout. Not even half way through I couldn't breathe. Full on panic attack- world crashing around you, sobbing realization. There was something in my lungs. Phil grabs me, my rock, my soulmate, the love of my life for eternity. I know what this means. I have 3 girls and at some point I inhaled all their flipping glitter. My lungs were glitterlicious. WE can fix that. Since my sobs render me incoherent- Phil puts me on the couch and calls my surgical oncology nurse. My old oncologist and I had functional disagreements- we will not be consulting him. She knows that if we are calling- it's not small potatoes. We don't cry wolf.  I compose myself. I convince Phil that I am stable, he leaves for work. I am not stable. I call my neighbor and without caller ID- she would not have been able to be over to my house before I could squeak out- please come over. My genetic counselor calls and gets me in faster than a glitter pod can clog your lungs to a different oncologist who will work better for me. I don't even care that I've earned myself that special difficult patient folder. I let Phil know, he clears his schedule. When he gets home I am varying degrees of stable. I know he has to work. We need the fricking healthcare.

The appointment comes and I like the new guy. Not a neophyte, not a geiser, juuuust right. Everyone seemed to expect me on death's door. That is reassuring. My lungs sound great- mets don't sound great he tells me. That's cuz it's glitter- glitter is a silent ninja. Not a word then BAM sparkles.! I point to a lymphnode- feel it. He can't feel it. No try again. Nothing. Oh god damn it- they thought my sarcoma was nothing. I still like him, he gets a chance. He talks about a chest xray. He has been briefed well by my genetic counselor. He is letting me make calls- he is giving me the offering and backing away. I accept. And bloodwork. Accept again. We say our farewells and head to xray. Apparently I have had too much medical community exposure as the tech asks me if I want a gown-I say no. I just have to take my bra off it has metal. Phil reminds me there is a shiny thing on my shirt- oh that will have to go. She goes to get a gown. Can't I just strip down in front of the xray? She looks horrified.Allrighty then I will put the damn gown on sheesh.  And I was just trying to get my sexy back as the one boobed bandit. Maybe next crowd.

The next day I am almost stable. I feel stable-ish. The doc gave ativan and ambien. Like I said- second chances are sometimes deserved and rewarded. I convince Phil I am fine- he goes to work. I bet he's not even to the flipping highway yet and I get the call. My Xray is concerning. I don't ask questions- which is really not like me. I hang up. I can't breathe. I can't breathe. Panic is not helping the tumors in my lungs. GDMFCSSOB. I call Phil. He can tell. There are no words. Ever the optimist. It could be TB. Yep. I hope to GOD it's TB.  Or a glitter Pod. He tells me to call Monica- he will be home as soon as humanly possible. In Humanly possible- Monica and I manage to clean out the craft drawer. The source of all things glitter. Glitter on ribbons. Glitter in packages. Glitter everywhere. Symbolically cleaning out my chest of crafts. Purging glitter.  

We line up appointment, after appointment, after appointment. The fast track is reassuring and terrifying all at the same time.  Afterwards we try to put on the glitter facade of normal. The kids know something is up. They know there is something in my lungs. I didn't tell them it was glitter. There is absolutely no friggin way to avoid glitter in our world. I don't want them to worry, even though I can see the worry, they are acting out in worry and I know they are worried. They have spent far too much time in their beautiful little lives worrying about glitter already.

The Chief of Pulmonology wants to see me asap. Good, yet terrifying. My mother's mommy radar goes off and I get very worried calls. I do what any good daughter does. I downplay it. She is not fooled. I don't even have to tell her it might be glitter. She's seen my house- she knows it's everywhere. I tell a few select people.  I learn that each in turn is battling their own cancer. Fuck- I'm sticking with my mutants- at least I KNOW they all fricking have cancer and at least there I fit in. They are amazing and wonderful and without this select group of women- I would be a puddle of ativan riddled glittery goo in a corner. They help me laugh, they help me be strong and they tell me to put my fricking glittery big girl panties back on.

 I gear up for PET/CT and MRI which adds to the pandora's box of nightmares in my head. I deal with multiple anesthesiologists and nurses questioning if I really need sedation for these scans. As I sit sobbing in the waiting room- Those of you who know me know- I DONT cry publicly - except for funerals and now apparently PET/Cts.  After I composed myself- I simply said- I have four kids- I know there is something in my lungs and although yes I should be able to GET THROUGH this- I KNOW what these scans will show and it means in there is a very real chance my kids will lose their mom sooner than they should. Things went a little smoother after that. Right up until Phil and I sat in the Pulmonologist's office and got to see the glittery tree that are my lungs. Perfect little round orbs of glitter. A few spots in various bones. So the testing goes on- we have metastasis- but is it breast or sarcoma?

Today was my biopsy. EBUS. Look it up if you want. Long-short- an endoscopic tube down throat into lungs with ultrasound guided needle punched into lung to grab samples.  A friend of mine(non mutant) looked it up on her own and recommended I get a ride home. This was uproariously funny to me. They won't even let you have the procedure unless you have an escort( I made sure mine was covered in glitter- bonk chicka wow wow).  The pulm nurse was paging anesthesia regularly after about a half an hour of my snark. In all fairness- I told him which vein to use for the IV and he didn't and blew the wonky vein. And so really afterwards he was asking for it when he asked me if I had any pain -so I calmly let him know- well yeah- this one spot riiiight here- and pointed to said blow out. But oh the anesthesia was good. And when I woke up- I saw one of my favorite nurses in the whole world and in a drugged haze yelled her name. Hopefully it wasn't as loud as it banged around in my head and I feel even worse that when she cheerily asked me what I was doing there- I nonchalantly mentioned oh you know- metastatic cancer. Ms. B - you have always been an angel and popped up when I needed to see a friendly face the most. Thank you!


Here's what we know. My system of tumor suppressing is shutting down. We either have to stop the glittery resources from overspending or we got to slow it down. There is no making it go away. We have entered the portion of LIVING with Cancer. So I'm sorry if you think the Government shutdown is the worst thing that could possibly happen right now. I tend to disagree. I don't have time to worry if I will be able to get non essential care. I just have to worry about hugging my kids tighter- finding a way to visually poof as much glitter out of my lungs as humanly possible and gear up for a fight. Those who care will carry on despite whether they get a paycheck or not and those who don't will realize that the exact things money can't buy are they things worth living FOR. Glitter On Friends.

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All About Me

As the first full week of school came to a close, 2 kids came home with weekend assignments. Now of course it wouldn't be the Princess or the Pig Pen who have no problems discussing themselves- it had to be the high schooler and the monkey. The 2 very children I spent the better part of the week culminating and relaying medical information on. I let them take the reigns.

Phillip wrote a list of pictures he required and handed me a thumb drive. He then sat behind me and vetoed photos that I paused on for more than 2 seconds. Ultimately I am lucky that our sense of humor is the same and got some bonus mileage out of about 3 wax museum pictures and a particularly endearing shot of him playing Adele's Someone Like you on his baby cousin's Fisher Price Piano for his section about the role of music in his life...

He would periodically ask me questions- I'm pretty sure just to gauge my "adult" response.  Hey what are those finger pricker thingies called? Oh dear God please tell me you know they are called Lancets? Knowing teen smile... So you are going to talk about diabetes? The guilt still hasn't settled that I have yet to actually speak to a human at his school regarding his diabetes or it's management. I am actually relieved that he is willing to increase the awareness in his immediate setting. Well I figure maybe I can talk about all the stuff I have to do, maybe I'll get a good grade- you know maybe the teacher will have sympathy for me.  My head begins to roll- I am mid lecture about pity and responsiblity in life when I turn to glare increduously at the teen whose main threat to livelihood right now is in fact me and not a faulty pancreas. He's got that same smirk and apparently his dad's same amusement in getting me riled up. You know how I feel about that?? Smirk.

Diabetes is a main part of his life- it affects his sleep, his emotions, it hovers and follows every meal or lack there of- it needs to be considered before exercise- and after, sometimes for days- stress affects it- hormones affect it-food affects it- it is part of him. I wish it wasn't. I wish his life was easier- because I know for sure it doesn't get easier than this. But I feel better that he has come to terms with it and accepted it as part of his life. It is as much a part of him as sports and family and parkour, apparently, which gets a full bullet in the presentation, by the way.  Hey you know that massive rock I scaled at Yosemite? You mean the one that caused this gray hair or this one?  You got a picture right? No, no I did not. I have learned in my 13 years of parenting that any time you hear- hey guys watch this- photographic evidence could probably be used in court for a case of negligent parenting- so no. Aw man- do you at least have one of me ON a big rock. Yes, yes I do. I just leave out the ones of you smacking into it like Peter Parker trying to figure out the whole web slinging thing. I didn't see the final product- I was not allowed- trying to let squirt go- but I am somewhat amused and worried that his plan for a presentation opener is - This is my family and we have an important relationship with Pooh.

I swear to God I almost didn't laugh. Almost.


Lily wanted more guidance- she needed pictures. We sat down Saturday morning and got to it. 4 HOURS later- I printed the last page. So if the point of the assignment was to give parents and children quality time together reminiscing the finer and not so finer times over the past 8 years- we crushed it! If the point was to give parents an idea of how their child views their history- I got it. And the piece de resistance- writing a 100% positive letter to your child about who they are and how much you love them with the tiny requirement of letting them know they should do well in school- well that's the kicker. I can easily be positive. 100% positive. Well I am 100%positive I COULD be 100% positive.  In our uncertain world- what things could I be 100% positive about? I can be 100% positive about my love and pride in Lily- in all of my children. Of all that I've learned over these years of trials and tribulations and temporary normals and new normals- is that I 100% love my children. I am not always 100% happy about their choices or behavior or decisions- but all of those really reflect my not 100% happiness with my own parenting and my own character flaws so I tend to try and go easy on all of us there.

 So when the angelic little monkey asks if it would be Ok to put cancer pictures in her timeline, I am forced again to look at a very painful time in our lives and accept that it is a very real part of who she is. She may not remember the throwing up- she doesn't thankfully- and the hair loss and various side effects and trauma memories have started to disappear for her. I am grateful. I know they left indelible scars on her psyche, but I am somewhat relieved when I hear that she has forgotten yet another major part of that horrific journey. I remember my mom telling us story after story from when we were tiny- so much that when paired with pictures, they have become part of my memory. This is a time I do not feel compelled to remind her. So as we take a trip down that memory lane- I swear to God I almost didn't cry. Almost.

She chose a picture from a time I remember vividly. A time when the Iv's came home with us and she had yet to get a G-tube and I could just see her little body wasting away.  In her 3 year old world, she was trying to process the needles the pain and Baby Pooh- a miniature version of her beloved Pooh- got to be the guinea pig. He was poked and injected and taped up and bandaged as we all tried so hard to come to grips with all the Poo that had been dealt to her. She told me she does not remember being in the picture, but she knows how Pooh felt in the picture. She said it showed her scars and her tubes and she had no hair. That's what she remembers. I hope someday that's all she remembers or merely the memories of us telling her about it.  We finally moved on to firsts- walking- riding a bike and all the dances and sports she has done since. It still feels like cancer takes up more space than it should. Yet it takes up space and it will continue to do so- I cannot gloss over it just because I wish it were different. In the infinite wisdom of youth- my children- even though it doesn't make me 100% happy-often remind me of the important truths in life. You are who you are. Cancer is a part of us. Only some of the scars are visible. It's ok to cover them up and it's ok to let people in to know that our journey has been tough and no, we aren't remotely "in remission".  It is part of who we are. It doesn't make us who we are- we become who we are in spite of it. So I sat down, tissue at the ready to write her an age appropriate- 100% positive letter. The part I was dreading was actually the easiest. Funny how that happens.

And in the end- I realized what the Freshman said in the beginning- This is my family and we DO have an important relationship with Pooh. We just work around that.

The policy of being Human

I am optimistically pessimistic. It really is disappointing that when people behave badly, it rarely surprises me- but when they are kind and considerate- it generally catches me off guard. People tell me all the time, they have no idea how I do it. I translate that into- not a compliment of reverence and respect for the chaos that is my life but rather an exhaled commentary of relief that they can't fathom some of the stuff I put up with.

We dove into this school year, not really having any medical policies in place for Phillip or Lily. I wasn't concerned so much about Lily because she is at a school that is familiar, the health aide knows her all too well and they know us as a family. Phillip is now at high school- which is a huge campus with lots of different kids and teachers and they neither know him or of his diabetes. It may be reckless, but I'm kind of letting him revel in the anonymity. I'm giving squirt the room to fly solo and see what he does. After all- last year I had all the paperwork in by July and thought a plan was in place and emailed every one of his teachers(heard back from 1), placed multiple emergency boxes in various classrooms around the school and found out in December that they were going over his "plan" in January. I think experience in the system has given me a better picture of what my expectations are and in what way I need to invest my time to keep my kids safe. One option is following them around to every class- another option is teaching them to manage their conditions independently.

I don't know if you've ever met someone whose identity becomes encapsulated in their condition. They let themselves be defined by it. At times it is absolutely unavoidable as many conditions tend to take over a person's quality of life.  As a person who spends a lot of time reflecting on Li Fraumeni Syndrome and cancer- I am always cautious about letting it rule my existence more than it needs to. It is an inseparable part of us- so we can't disavow it without amputating that part- and unfortunately many of us have amputated bits and pieces trying to distance ourselves as much as possible from the beast. But it is a choice- how much it is allowed into every day life. That shapes how I interact with people because I know how much their view of what we've been through changes how they treat us. I know first hand that many people with the worst scars- have learned to hide them so well- you will only see them when they want you to.  I actually have come to appreciate the look of shock when people find out my history- it means I am a better actress than I think and manage to play the harried normal mom role pretty well. Every now and again I get to be the person surprised- and I also appreciate the hell out of it- because I know the effort it takes to put pain aside and keep going and I respect when I get a glimpse of someone else who has done it for years.

Lily's Counselor was on extended leave last year. Since counselors at schools wear many hats, her absence did concern me since she is the go between for our emergency plans and all the technical paperwork ensuring Lily has a safe learning environment despite her condition. I was dreading having to waste another hour of my time going over a technical document.  Last year we also gained a new principle- which left a hole in my emergency plan- as the former principle promised me that if Lily ever needed the injection- she personally would see to it. A complete 180' from our horrific experience at Keoneula Elementary. So this year, the other counselor called to schedule a meeting so he could become familiar with Lily's case. He knew Kiera and was extremely apologetic that he had no idea of Lily's condition or needs before now. I didn't expect him to and I was full aware that our counselor was out- I knew I could go to him if needed- but I also knew he was filling the role of 2 counselors- there are many kids with a variety of needs- I triaged Lily. He also let me know that the vice Principle was no longer at the school and Lily had a teacher who was new to the school. So far this year we are 1 for 5- thankfully the health aide is still here and amazing! 

I did what I do every year. I opened up the adrenal insufficiency file on my computer and printed out the multiple documents I've saved over the years that explain adrenal insufficiency, it's symptoms and treatment. I print it out every year and give it to Lily's teacher along with an emergency management page with her photo- our numbers, the doctor's numbers and when to call us or 911. I make extra copies for all the new folks who will be in the meeting. My view these days is that my job is just to make them aware of her condition- they will be the ones who will be my greatest assets if she gets sick or injured. I do not expect anyone in the educational field to provide my child medical care-their job is to educate- if they wanted to be in the medical field they wouldn't be at school. I do expect that they let me know if something seems off.  Her teacher called me the first day and we had a lengthy chat about everything. She is a wonderful, compassionate person and assured me that she would do everything in her power to make sure Lily was safe at school. That's really all I ever wanted. I know there are no guarantees- kids get sick, kids get hurt. As her mom, all I want is to be heard and feel comfortable that someone has it on their radar that Lily has a special medical need in an emergency.

The meeting went how I expected my very first meeting to go. The differences were many from how that first awful meeting went. I walked into it with the expectation that this was an opportunity for me to create awareness while filling out documents that were a formality - they were so someone up the chain could check off boxes that say I am comfortable with the plan. The policy itself will not provide me that room for comfort, but I am not one to split hairs unless provoked. I also have learned that reasonable people are guided by something greater than policy- which is what Lily's case needs. A rare condition such as adrenal insufficiency- should not be a subsection in any school health policy- it doesn't affect enough kids. Policy does however need to provide space for case by case accomodations with such rare conditions as adrenal insufficiency-in the past it has not done this.

Yet this meeting was different because everyone knew Lily and obviously cared about her welfare. That alone means more to me than a policy demanding someone give her a shot in an emergency. To me- when you care about something or someone- your actions whether perfect or flawed are much more pure than if you are person acting only because bound by policy. It is the basis of human nature and it can be evil and ugly or pure and magical. I will rest better at night knowing that Lily is in a safe environment. Safety is not guaranteed- it may be a bumpy ride- but I know that those around her are caring, decent people and that means more to me than a document.

As we talked, mostly off record - Lily's counselor mentioned he also had high frequency hearing loss and had cancer as a child. I noticed years ago that he had hearing aids- but I had no idea why. He told me that his hearing loss was due to radiation treatments which then I had to ask where his cancer had been. He had a grade 3 astrocytoma when he was 13. Now it was my turn to be shocked. In a school that we have been in for years- I've seen and passed this man more times than I can count. We say hi casually- but in this moment we are connected again by a horrible disease. This is the moment that is hard-do I mention that both my brother and dad had the same horrible brain tumor- yet somehow the look of shock must have been on my face. So I tell him, he says gently that he wasn't supposed to live past 6 months either. We are connected because the little girl we are here talking about was given a poor prognosis- and before me is a survivor - another sign, another reminder that the human body and spirit are amazing and the possibilities are endless. Sometimes the reminders are right there in front of you if you only take pause to see them. The reminders are human, the connections are real and without them there is nothing left but meaningless documents. So I for one was very grateful that my time was not wasted on checking a box or creating policy, but in getting to know another person who shares this crazy journey and can knowingly travel it beside my daughter. I am hopeful.

Finding Paradise

Planning doesn't work out for us and mainland trips. After moving here- we heard it a lot- but why would you ever want to leave paradise?

Definition of vacation: a period of suspension of work, study, or other activity, usually used for rest, recreation, or travel; recess or holiday.

Definition of Paradise: 

1.

heaven, as the final abode of the righteous.

2.

an intermediate place for the departed souls of the righteous awaiting resurrection.

3.

( often initial capital letter ) Eden (  def 1 ) .

4.

a place of extreme beauty, delight, or happiness.

5.

a state of supreme happiness; bliss.

  

After almost 8 years of living in paradise, I sometimes feel like a character in Lost- running around trying to find my way home while others keep telling me the island doesn't want me to leave. The first time I tried to leave for vacation- Lily was diagnosed with cancer.  While we were planning her Make A Wish trip- it was excruciating hitting the ups and downs of chemo and adrenal insufficiency- I felt like we were baiting the Gods into showing their fury for us trying to do anything restful, recreational or happy. For the year  she endured cancer and treatment- this place did not feel like home, heaven, supreme happiness or beautiful. It did however feel like we were hovering on the precipice to the intermediate place for departing souls- so I guess in that respect- we had our paradise.

Cancer robs you of any ability to plan while occupying almost every vacant space on your calendar.  But after a year of Phil working 3 jobs- my recovering from my own dance with the cancer beast while trying to find yet another new normal and prepare for the eventuality that no one gets out alive. I was not feeling the paradasical love- we needed a vacation from our paradise. We try to harness a couple days here and there throughout the year for staycations- and during those times we too appreciate the beauty of the island that we call home. But most other days- its gridlock for 2 hours added to the husband's 14 hour day while I try to balance the health, house, school and activities- without the added challenges of rain, snow, or any of those pesky seasonal changes. 

So a few weeks ago, while enjoying our little plot of paradise and several beverages- Phil chomped on that proverbial bullet and bought 6 plane tickets to California. Seize the vacation my friend. Former Jen would research hotels, activities, sights and attractions. She would spend hours upon hours devising the most efficient and jam packed itinerary. For when you live in paradise- a vacation from beaches and relaxing is traveling and seeing and doing. I was exhausted and fearful to even think about the possibility of getting away- after all- I had I litany of scans ahead of my little family. With one swipe of the ipad- the husband had baited the gods of fate- I was left to wait and see which form retribution would take this time. 

Yet the scans came and went. No repurcussions. My check up was anticlimactic. I felt for sure the plane would crash. It's a strange place that cancer aftermath puts you in. Especially living with a hereditary cancer syndrome. Everyone expects that once you are out of treatment- you are "done." But you are constantly waiting for the other tumor suppressor to drop. As much as I try to be positive- every aspect of life become prioritized- work gatherings take second place to family time- as they should. My support system wanes and I realize it is my fault- but I trade the frivolous social time for quality mutant time. I see the changes in Phil too- he's lived the cancer beast several times now- he too wears the invisible scars. I don't plan. I try and then when it implodes- I scramble. SO in the effort of efficiency- cut out the planning. Some call it spontaneity- for us it becomes a way of life. 

Phil did most of the planning- I submitted a wish list and some input- as my research skills are still superior. What forms is a rough outline- really just a choose your adventure chapter- a flow chart for all of the inevitable roadblocks that will pop up. I didn't even clean the house or finish the laundry before we left. That was my offering to the gods of fate- maybe if they let me have this vacation- I could deal with mouldy laundry and bugs when I returned.  

Our vacation in all respects was a success. It was a jam packed itinerary in every regard. We travelled- we drove over 1000 miles in about 4 days. We walked, we hiked, we saw, we experienced. We vacated.

We saw a friend in the Crossfit Games, 

 

Walked along a pier.

Bella declared Hollywood busy and crowded with lots of people buying and selling stuff.

 We rode rides on the Boardwalk in Santa Cruz.

 We sampled some grapes and some olives.

 Met our new cousin and got some good squeezes in on his brother. 

Met a fellow mutant.

and another fellow mutant. 

We walked on the Golden Gate Bridge.

We hiked around Yosemite. 

And we ended up at one of the Happiest Places on Earth. 

Our final dinner of vacation was with new friends who felt like old friends- who share this crazy adventure in genetic cancer mayhem. I watched my my husband chat with someone who could relate to his journey. I think it healed a small bit of his soul.  We watched 2 little girls who have battled cancer and although they did not even share the same language- communicate and relate in a way more humans should- in a way that only souls tortured by disease could understand. As adults, we watched and smiled and wondered if they had an idea why they were drawn to each other- or if they just were being kids. Either way, it was a bit of paradise.