Sunday, July 31, 2016

Day 2-3 Steroid diaries. Shit hits the Fan

I've been bad about journaling and my friend Cheryl likes the daily reports so I figured I'd start with the steroid reports. You know- days and days of me fighting the inner hulk, the tales of insomnia. My friend Murphy well- he and karma(who sometimes is a bitch) seem to be in cahoots.

After a few hours of sleep- I got up and started catching up on nonprofit work. I'm still woefully behind, but I had plans of productivity- the kids go back to school next week- I had all this week to get organized......famous. last. words. 

Tuesday starts out good. Right until Phillip wakes up and wanders into the bathroom. He's 16- I do not inquire as to what goes on in there I just set out water usage and cleanliness guidelines. After awhile I hear the sounds. Those sounds. The puking sounds. Then the explosive sounds. Oh- I see how we are gonna play this Murphy. Awesome. He opens the door- drenched in sweat. No fever. I kinda don't want to go anywhere near him- but it's kinda my job. I ask him about sugars and insulin pump function(there was a small issue with it last night, so if the site goes bad, he could build up ketones which produces ketoacidosis- vomiting, just really bad for the body. Critical and quick. So I test his sugars and ketones. Sugars high, ketones low. Ok. He takes some insulin. This sets the tone of the day- he wants to rest and this means every 2 hours he needs to check blood sugars and ketones. My job is to remind him, aka be the nag. It's in the job description. I remember having a concussion as a kid and only wanting to sleep but not being allowed to- it sucks- but...job description, triage, health, hospital avoidance, yada yada.  

Kiera and I had days of organizing planned- it's easier to start the school year with a little order because it gets busy and hectic fast. We have to run to the post office and the store for bins- after 2 stores we cannot find what we need. Standard. Kiera is texting Phillip and Lily for updates. Phillip is not able to drink without throwing it back up. We are at stop 4, it's time to ditch and take care of the boy- its after noon and he's been puking since this morning. We grabbed chicken noodle soups, jello, ginger ale, maybe a swimsuit for Kiera and a couple school supplies and we were out. Sans bins- the original purpose. But that's just how it goes sometimes.

Phillip is in bed and he looks awful. I know mumbling grunts in response to questions are kinda the norm for teens- but this is more. We are getting to the point I'm gonna have to make some unpopular calls. I take his blood sugar and ketones. 300 and .6. Damn. He can't keep water down, he hasn't peed. damn. Still no fever. I have him give himself some insulin- god bless the pump that does all the calculations for you and your sick kid.  I call Phil first. damn. See I don't have Dr.P's pager in my phone- I usually call the wonderful nurse Drizza and she makes everything all better. Phil says go directly to Dr. P. damn. I know what this means.  After I page her, I start throwing stuff in a bag.  She calls me right back and I explain what's up. She knows we don't call unless it's big. She's already giving residents orders in between asking me questions and my trying to rouse answers out of Phillip.  She tells me what I already know, dehydration is bad, ketones, bad, it's best to stay ahead of this and come in and she's trying to find the easiest way for us. I appreciate it so much because well I don't know if it's the steroids or adrenaline but I'm worried. Usually I avoid the hospital at all costs but I've also learned- sometimes caution does save a lot of pain in the long run. The quickest option she has for us is the ER- she promises that she will call ahead, they will be waiting for us and she will meet us as soon as we get there. She warns me if there is the possibility of admission. I realize this and we both know we are hoping to avoid that. I ((heart)) her. How quick can we be there? Since I've already packed my overnight bag(in order to avoid an overnight visit the overnight bag must be packed and ready- it's a rule)- I tell her if there's no traffic maybe a half an hour. I am smoking crack apparently because I just jinxed the fuck out of this. Yeah I dropped the f-bomb. completely warranted. would do it again. And not mention traffic or estimate being to the hospital in 30 minutes. ever.

I stuff Phillip's supplies in his bag, grab him a sweatshirt, continually tell him to get dressed, like no really, we are leaving, like I know it sucks but we have to- like really I can not do it for you- you are huge- buddy just flipping put a shirt and shorts on and lay on the couch. I grab the emesis basin, line it with paper towels(learned the splashing vomit in the car lesson the hard way....more than once. )Water bottles, towel- Lily helps carry everything to the car. Kiera has ballet, so the littles will be alone for a couple hours. fuck. I forget they are still little and even though they can stay alone for a couple hours, I don't know how long we will be- I can tell they are worried. As we leave the neighborhood- I call Phil to let him know the plan, I call My wonderful sister in law's sister to see if she can take the girls, I call Kiera to make sure she has all the numbers and will lock the door. As we get about halfway to Tripler, traffic stops. Yep I did that. way to go jinx face.

Phillip is hanging in there but the way he is shifting around tells me- vomit is not my only worry here. Not much we can do, I try to talk with him to distract him. It's clearly not helping, he tries to sleep. We get to Tripler well over an hour and a half after planned. I park by the door- where there is no parking- it is truly truly cruel the lack of parking by the ER- but that is a discussion for another time. Phillip says- I have to go and is moving at a slow but determined pace. I throw the emergency lights on- which is my small attempt at signaling- please don't tow me I need to emergently help my son to the bathroom before the shit hits the fan. He makes it. The lady hobbling in front of us is hacking on a level I hope it is seriously not contagious. I get him checked in and the receptionist just hands me his wristband. The noises coming from the bathroom are fairly explosive. The triage nurse peeks out and I shrug- she says to just bring him back when he's done.

When we finally get him over for vitals, the nurse is amazing. Her daughter has diabetes, she knows the drill and asks the right questions, like- is this diabetes sick or does it feel like something else? Phillip says definitely like something else.  Dr. P join us and hugs me and says I'm looking pretty good- which is not to say smelling good because well I'm pretty sure I hadn't showered recently. She mentions she expected us sooner and I explained traffic had other plans. I take the opportunity of Phillip being in capable hands to run and park the car. It is now late enough, parking is not a problem. thank you traffic? Phillip gets some zofran and a sip of water.

A room isn't immediately ready, so we wait a few minutes until Triage 2 where they give him an IV and draw his blood and then take him to a room. I know things move kinda slow from here, which is ok- that is a good sign. When things move fast I get twitchy. The attending stops in and sounds grateful that Dr. P pretty much ordered everything needed and they just had to set it up. I round up some blankets for him and pretty soon he is all hooked up to the machines and some fluids. Within the hour he is starting talk to me again. The fluids helped tremendously, he was pretty dehydrated. The water bottle I grabbed is sweating all over my bag so I ninja a special Koozie for it out of a napkin and Coban wrap. Phillip is not impressed. He is doing better and my role is to hand him his water bottle whenever he reaches- he's reaching more and more. Nurses are in and out- it's right around shift change. His blood work is trickling in, so far so good- no alarms. He doesn't even have ketones. Um yeah well maybe our old glucometer we use for ketones is set to 2011 because the ketone strips I could find expired in 2012 and maybe that might not be the best. The doc shrugs, probably didn't matter, as dehydrated he was, he probably was throwing some. She orders some new strips for us. And some zofran. As soon as he pees and finishes the fluids, we can go. He is ready to go and wants something to eat. what the heck. I'm glad, but dear God. I look at the clock 3 hours- I think that might be our Tripler record. sweet. This ensures that Phil will competitively commandeer the next ER mission in order to beat my time. mwah ha ha. yeah I know, jinxed it.

We stop to get jamba juice and I call and let Phil and the girls know we are on our way. Phil asks Phillip if he wants anything from McDonald's. Phillip looks a little green. He passed the dad test. We make it home knowing it's going to be a long night of every 2 hour blood glucose checks and keeping him hydrated. I am thankful for the steroid energy. We get all the littles into bed and I start the cleaning routine. Laundry, kitchen- I dump out both of the boy's bags, glucometers and such into a bin and proceed to clean and try not to gag. We are lucky if this isn't the plague. Teen boys are gross. We warn the sick child there will be big discussions about this when he is feeling better.

I am feeling exhausted, Phil is drained, I check Phillip's Blood glucose and Ketones are measuring on his glucometer.  I have him give himself some more insulin. I'm wondering if the meter needs to be calibrated but I can't find the darn solution and I'm pretty sure if I did, it would be expired. Damn. Phil says not to worry, it will be fine but I know I won't sleep so I run to the drug store and grab some urine ketone test strips. I feel like I'm out of diabetic crisis/sickness practice. This is a good thing. I don't have much faith in the urine test strips. But more so gonna compare to the glucometer. So on and so for the next few hours. And of course when I get back and wake him to test ketones and sugars, he has a fever. So that's another tally for viral/bug/plague. I finally laid down on the couch and just closed my eyes when Bella boo comes down, her tummy hurts.  Well damn. I don't want a house full of puking, but if it is a bug then I know it has to run it's course and I also then know that Phillip just has a bug. Or that he and petri dish are licking the same plague source. I send her upstairs to get her pillow and I am following her to grab the other emesis basin when she dives into the bathroom. Now is a true proud mom moment- Bella is a notorious bad puker. Like everywhere- you could be holding the bucket under her mouth and she would pull away and splatter everything. She made it to the toilet. Yep. I done good- big milestone.

I grab a ponytail holder and tie her hair back, in a gesture she hopefully will repeat for her sisters or dear friends many many years from now. I get her cleaned up and settled on the couch and go back to clean the bathroom. It's a superficial job until morning as I have to supervise the accuracy of the newest puker and then it's time to check the diabetic. I take the chance to try to sleep next to Bella on the couch, but my head is spinning, my stomach feels off and I hope it's just the adrenaline and steroids and lack of sleep. I drink tons of water. It is Thursday. It is a new day. I can do this. My hands sting already from the incessant hand washing. I really don't want to puke. I think it's probably bad to have that much pressure with a brain tumor in the cerebellum, but I can only do so much.

The rest of the wee hours are a vague blur. I remember Phil getting up for work and saying goodbye, then chasing my steroid dose with some coffee. Good luck stomach. Then setting about to disinfect all common surfaces and loads and loads and loads of laundry. I called to cancel my ECHO which dang- gotta reschedule that. I call nurse Drizza to check in and ask about the worthlessness of urine ketone strips. She always makes me feel like I'm not an idiot, I appreciate that. By midmorning Phillip perked up and was laughing hysterically over some silly internet something- Lily helped me clean her and Bella's room, Kiera remained quarantined in her room- she doesn't DO sick. I texted my Sister in law with tons and tons of apologies that we may have exposed them to the plague. So even though it completely sucks to be on steroids and have 2 sick kids- their bathrooms are a level of clean they have not seen in awhile. It is a bit empowering to know that I still can function in normal crisis, albeit with performance enhancing drugs. And somewhere in there Phil came home from a really long day at work and it hit. The what on earth will I ever do without this woman? Will it ever get easier? But mostly- WHAT THE FUCK. Because part and parcel- it's normal sick shit. It happens- people get sick all the time. But during a chemo week after a really long ass few weeks- it just slams into you sometimes. Was it the hardest of weeks- nah. Top 10- not even. It just tends to be cumulative and you get tired. And sometimes you want to get bitter or pissed, but then you realize as always - it. could. be worse. So instead of grabbing the bleach spray, I grab the husband and we go to bed and although he sleeps, my mind won't rest but I know he needs me there- so I stay.

Wednesday, July 27, 2016

Day 1: Steroid Productivity

Ahhhh yes. One of the up sides of steroids- the almost manic, burst in energy. 12:35am and it may as well be 6 am. Post coffee.

The discussion with the neurosurgeon went like this...

There is growth(we know that) words words words words, spectroscopy background- this part fluid, this part, probably tumor. It could be necrosis, it could be mixed necrosis and tumor, but it looks like some growth is tumor. We can't know for sure unless we cut it out.


But good things- no symptoms. We can treat some of the swelling with steroids, and watch the growth. He is comfortable waiting 6 weeks from the scan to rescan which is 2-3 weeks from now. That doesn't seem particularly far away. IF it is stable(please please please please be stable) we wait and rescan in a month to 6 weeks. IF it has a minor growth(please please please be minor to stable-we are actually hoping for necrosis at this point- lesser of the evils) we have a serious discussion about surgery and what exact point we need to control what's going on and we will rescan. If there is growth(GDMFCSSOB) then we discuss surgery. We go over a little about the surgery and have the- some unpleasant side effects but buying time discussion. I know all of this. It ALWAYS sucks to have this discussion and I've had it far too many fucking times in my life. For me, for others.  But then again here I am. Let's do this. Let's dance.

Phil is pondering. He is very calm, even, pragmatic. He wants numbers, percentages of risk, mm-cm in growth, what stages of growth mean what for discussion, timeline, a plan. I can see he's got about 6 different pages loaded in his brain and already emergency planning, drafting schedules, trying to figure out plan A, B and C. I see it starting to dawn on him. He is a do not worry until you have to person. We are getting dangerously close to have to. And somehow this is the shittiest part for me. In the waterfall of tears that fell last week- the worst are driven by the how much this impacts the ones I love.

The discussion on steroids goes like this....

doc: I think we should try some steroids. You've had some problems in the past?

Well, yeah I kinda get this roid rage problem. It's noticeable. But I guess as far as side effects go- well there's the acne- and the insomnia and the anxiety, and the carb craving. indigestion. Minor but annoying. But if swelling is going on that's bad, so we probably got to deal with that. Can we try a low dose to start?

doc: I'd like to try 8 milligrams to start. At least the first day then we can decrease to 4.

Ok, how about 2?

doc: hmm. ok, I'd like to still do 4 milligrams to start, 4 times a day then 2 milligrams 4 times a day.

Um- wait, I was talking about 2 milligrams a day- total.

doc: sighs. You know how you react. what about 2 milligrams twice a day, or you could take 4 milligrams all in the morning.

I will do what you think is best( I will not like it but this negotiation is telling. Doc doesn't like to use steroids unless he has to).

doc: let me put the order in, you can go right down to radiology and schedule your MRI.

They won't have it ready til tomorrow.

doc, confused: it should be ready right away. (walks us to door)

oh yeah, your order will be there but it takes the radiologist 24 hours to review it, yada yada.

doc; but they know your family down there. He stops, thinks- 2 milligrams, twice a day is ok but call for any symptoms or changes.

I know right, somehow still, no. It takes 24 hours to schedule. (And we don't have a family suite or a parking space either, but somehow we manage. The valet dudes' are grateful for our contributions towards their kids' college education and have been very gracious and I think Mutnt has an honorary spot with them thanks to the Phil Mallory tip on the way in and way out system.) We wait far too long for a prescription of dexamethasone that I already have. I don't want to talk about my home apothecary. It's also fairly difficult to dispose of expired meds. Another pondering for another time.

We get home just in time for Phil to run Kiera to dance class. Lily comes and hugs me. Did I mention she offered to come and sit with me at chemo- because it would be fun. She worries about me and I think this is her way of trying to hear what's going on. That or she thinks we spend the whole day eating out without her. I decide to have a talk with her tomorrow. Ease some of her fears with realistic optimism.

I can tell Phil is drained.  We have to stagger our dealing with this to accommodate our supporter/supportee roles. We argue about stupid stuff , because that's what you do when you are sad and mad and stressed. And we will meet somewhere in the middle and hug it out and help each other through this.

This morning I eat something to protect my stomach and take 4 milligrams of dexamethasone. By 9 O'clock I can't sit still. Phillip and the littles have piano and Kiera is helping me collect bags for goodwill. I have to drop medical papers off at school for Lily and we might as well declutter in the process. Lily and Bella want to go too- so we wait until lessons are over. We talk about house cleaning after and the plan.

We get home- I make lunch and since they know it's time to clean Bella asks Kiera for a ballet lesson. After 30 minutes of ballet- suddenly everyone disappears, except Kiera- she wants to clean. I find Bella asleep on the front room floor and figure it's probably better to let her sleep. 3 hours later we have organized a pantry, the kitchen desk and a shelf in the cabinet. She has to head out to ballet and makes me promise to clean off the table for dinner. She knows otherwise I might sit down and not get up. Because this is a lot of activity for me day after chemo. But- roids.  I look at the clock- it's 5pm. I check in on Facebook land and chat with friend. There is no way I'm taking more. I'll never get to sleep. I clean off the table and fix dinner.

It's almost 8pm when we eat. Add bizarro time warp to steroid side effects- up side is I still have energy to watch some tv with Phil. And read for an hour. And then I try to sleep and well, here I am. This is not bad, the anxiety isn't too bad. Except it is 1 o'clock and I'm awake. The quiet is kinda nice.    I'll schedule the MRI tomorrow, or thursday when I go in to have my ECHO. Until then I will try to take advantage of the up sides of this new phase.

Sunday, July 24, 2016

Man's Best Friend

Phil is my best friend. He's my husband, the father of my kids, but when it comes down to it- he is the person I want by my side when shit gets real, when I need to have an ugly cry or when I just need to laugh.

There are times when I want to strangle the ever loving shit out of him.

This is not one of those times. We have a history of hugely inappropriate laughter in doctors' offices. So last week we are in the neurosurgeon's appointment. On the way I hit 2 flipping birds- they fly into cars here- some sort of natural selection I guess but it really puts a damper on the day. So I'm mulling over the loss of life- or killing proficiency as Phil calls it and wondering if that in my attempts at meditating and harnessing energy to heal I've created a weird force field around my car that birds are drawn to - when a golf ball smacks into my car door. This does not help my mood or opinions of the "sport"of golf. And clearly I'm flicking meditating wrong now too. Fortunately traffic comes to a screeching halt on the highway- so I call the golf course to report it. I will have to swing by (ha ha ha) after my appointment. This really doesn't seem important- dent in car, tumor in head. Kinda got bigger fish to fry. But we will see. This might be a principle thing.

So back to the exam- I have to go through the neuro tests. Which I am not great at under perfect circumstances- much less the weight of brain tumor and trying to pretend everything is just fine-land. Tough- nose to finger- nose to finger. Reflexes. Walk back and forth. On tip toes. No really, on your tippy toes. Ugh. Hop on one foot...

Phil: Bark Like a DOG!     simultaneously  me: I WILL NOT BARK LIKE A DOG!

If you haven't seen Coming to America, shame on you. But here's the clip that as the neurosurgeon looked on in horror- I had to explain because Phil was laughing so hard he couldn't speak. Sometimes you just gotta laugh to get through. I'm sure listening to how your best friend has a tumor in her head sucks donkey balls so I'm giving him some leeway here.

I've had lots of friends in my life. Really really good friends. I have had some really really shitty friends.  When I was a teen, my dad used to say I had a problem with strays. I thought it was that I'd been adopting furry friends with issues since I was little. He meant my friends. I see someone in need and I want to fix it. Maybe it's because I read every Judy Blume book as soon as I could. And Reader's Digest by the cart full. Maybe it's just who I am. I've always been uncomfortable in groups. I'm much better with one good friend at a time. Once you are my good friend, you will always be.

Adopting the Air Force Lifestyle meant a whole new string of best friends every few years. As much as the good byes sucked, I know I have wonderful friends all over the world. I've dealt with my fair share of mean girls and sorority girls, not all are entirely bad but I do have my limits. Mostly I learned that people's differences can both infuriate me and make me better if I appreciate them for who they are. If it does not make me better, then I limit my exposure to them.

Almost 8 years ago, I was out doing yard work in the front. A car pulls up and a lady asks me something or other about what I was doing. My first thought was- dude I'm trying to squeeze 3 hours of work in a one hour nap time - really don't have time for this. Then I see two little faces peeking at me from her back seat. Right around Kiera's age. Kiera was the social one. So I chatted with my new neighbor Monica and met her daughters Sophia and Olivia. Monica and I had many adventures in the years we were neighbors. Redid floors, painted, crafted, parented, friended. She became my kids' other mom- as well as mom to most of the neighborhood. If something broke- either she or her husband would surely know how to fix it- mechanical, inanimate, human or pet. When they moved last year, it took me months before I could even get around the huge hole in my life to call her. Mostly because doing all the shit she used to help with took a while helluva lot of time and energy.

I am not always the best at keeping in touch lately. But I also appreciate how busy everyone else is and that everyone has their own crises. When I do get to chat with my friends, even if it's a quick message stream- it feels like a luxury, yet the true friends I've kept over the years are the type who don't hold grudges and when we do talk or meet up- you'd never know we hadn't seen each other in 10 years. When she and Tom were in town for a much too short weekend- it was wonderful but also felt like a big scab got ripped off. I got so busy in the day to day I forgot how much I liked them and missed them.  And in true friend fashion- I had brought her gifts from Europe. Tea, trinkets and truffle oil from Italy. Monica laughs and runs out to the car to retrieve her gift for me- truffle oil. That's just how it is.

Her girls came to visit this summer and would pop in and out like they used to. Except everyone is a lot taller. And has much bigger cup sizes. One morning I get the fateful call from Monica. Skippy- their beloved diabetic poodle died. Now, Skippy almost died about 8 times previously. I personally said goodbye to Skippy 3 times- tears and all. Phillip and Skippy often bonded over insulin shots and I swear that pup could sniff out cancer. Yet it is still not easy to say goodbye to a friend. "Should I tell the girls?" she asked. Um yeah. I am not a fan of postponing information like this- it just makes grief messier and gives people a piece of anger to fixate on. As a mom, I know she didn't want them to grieve and not be there in person, but grief and loss is hecka inconvenient like that. I won't tell my girls, so if her girls need to,  they can. I do tell Kiera and Phillip, they are older and need to process so they can support their friends.  It's part of grieving, the telling and the processing. I recognize this and teen girls, well they are teen girls. So I JOKINGLY say- just send some of his ashes here- we can sprinkle them in his favorite spots. You know- where he would shit in my yard.

I am all for memorials and closure, but Monica and I have different views on spreading of ashes. I feel they should be spread. She keeps them in a closet tucked between yards and bolts of craft fabric. In my world that is a spillage and vacuuming nightmare waiting to happen. I'm not entirely being an insensitive ass, I was mostly trying to make her laugh- I've spread some ashes in my day so I'm "allowed" to weigh in. I know everyone deals in their own time and timing and location has to be right. And sometimes you need a friend to help you with the hard stuff or to lighten up the moment. Or a friend to ship half of your beloved poodle's ashes to. Yeah I'm that friend. I am not the funny friend. Or the wild friend. I am the friend that can be trusted to dispose of ashes. Or bodies. Remember that. On second thought - don't-I'm kinda maxed out right now.

In walks Phil, a week or so later. Why are there packages to Alyssa from Monica on the kitchen table? Oh those are Skippy's ashes and some other items.

Lily- skippy DIED?

Tears. oh shit. Phillip- Skippy died? Well dammit- I KNOW I told the big kids. Kiera looks at me- I told him right- she nods- you totally told him. But the girls didn't tell Lily and Bella?  Kiera- guess not. Obviously. Outstanding.

Phil- please tell Monica that she has earned herself a ziplock full of ashes when you die.

See he's the funny one. God I love him.

Since the boxes are not addressed to me- I can't actually open them and dispose of, I mean scatter ashes. And I think Alyssa is avoiding it. So I might have to get all friend on her because the extended puppy wake has moved from the kitchen table to the hall table. At least the girls don't tear up anymore and say- oh skippy in that really sad voice.  And that's the thing about friends. I can call Monica ugly crying from a park bench around the corner because I don't want to have to explain to the kids for the 3rd time that morning that I'm ok, I'm just sad. Because they and I both know I am more than just sad and I don't have the energy to address it right then. Yet as they grow I hope they see and know that is why I am choosey about my friends and help them to be selective with theirs. We are kind to everyone and have tons of room for endless friendships, but in our lives the true friends will be tested over and over. And I hope they will have friends they can ugly cry with and be trusted with ashes.

Wednesday, July 20, 2016

Rarely are things black and white with scans. It's pretty subjective and it's own art form. 

Results for kiddos are in. I'm going to tinge this way over optimistic with a slight shadow of caution because that's just how I need it to be right now. 

Bella: Gets the prize for only kid with nothing weird commented on. Ironic, I know. For Mallory MRI bingo players at home- we count this as an all clear. Or unremarkable which is the only time Bella is encouraged to be unremarkable. 

Lily: Will have a follow up with ortho so they(the bone docs) can weigh in on the slightly growing(small) spot in her humerus. No one is concerned and everyone except me was content to wait and scan in 3 months. Fortunately we haven't been to orthopedics in a few years, so I cannot say how good they are and her oncologist is humering(pun-get it?) my concerns. I can be just about positive they have no knowledge of LFS. I do have a couple emails out to specialists for my own sanity. But hoping this is just a quasi normalish benign something or other we only see because we scan regularly and cautiously. The good news is nothing was concerning on Xray- but LFS cancers tend to be weird. It basically is for my sanity. I know we can't be sure without cutting into her- and I am not prepared to do that yet- but I would like more information. Everything else looks good. Thankfully. 

Kiera: Has a Baker's Cyst. Nothing to do with cakes at all. or baking. It's a little pouch of something or other behind the knee. She has no complaints- most likely something we wouldn't know about but because we scan, we do. So other than that- all other areas unremarkable. Again ironic- but what we shoot for. We love unremarkable scans. 

Phillip; Still has a stable arachnoid cyst- unchanged, not a problem. He does have a spot on his humerus head(aka shoulder joint) that was a little hyper intense. He is a pretty intense kid and tortures his shoulders a lot in workouts- He has a routine appointment for diabetes on August 1, so I will talk more in depth to the docs about it then. I do not think it will require follow up, if anything we may X-ray or check on it with MRI in less than a year to compare. All other areas- unremarkable. 

Now Me: The PET was good. PET/CT monitors for active metastasis in the body - and I got no progression/ stable.  It is good news. The brain MRI was not so reassuring. Hence- it was remarkable. and not in the good way.  There is some growth in boobie the cerebellar brain met. It is only a couple millimeters, so that is good if we are going with overly optimistic. We are- I told you that earlier. What we don't know is what kind of growth. It looks like radiation necrosis, which is when healthy tissue around the tumor(or tumor) dies. It can cause swelling-which there is and symptoms- which I thankfully haven't had.  The only way to know for sure is brain surgery and I have major PTSD about brain surgery. I also have an aversion to death so at some point we will have to make the call between a tumor and a tough place.  Needless to say I've been a little liberal with the anti anxiety meds this past week and taking lots of walks. And lots of tears. The kids know something is up and I reassure them this is just normal follow up with less than great news- because in mets world it is. It's not an emergency and the professionals are calm. Because they are professionals. I on the other hand have no license and can freak out as much as I damn want. Which I try not to but the freak outs seem to find their way out in the form of watery deluges of my eyeballs.  We did MRI spectroscopy on Tuesday- the idea is to try and get a chemical signature from the tumor area to see if we can get any more information. The best way to treat necrosis, progression, or new tumor(the 3 things it might be) are all surgery. The information from the MRI will maybe tell us if we can give steroids a shot to reduce inflammation, but the likely result will probably be surgery. Maybe not- I like to keep it weird but also real. I have NO idea about timeline so please don't ask. 

I have treatment next week- will check in with the docs then- right now just managing stress and the kiddos' last couple weeks of summer. Not one of them has yet to say they are bored, which was my only goal this summer.  Little shitheads can't even complain of boredom for their poor mother(sarcastic tone- I'm ok with this, we all need lots more down time). This will be a standard- wait and see and hope things don't get worse- situation. And during this time I keep busy and it's tough to be social. Sometimes all the normal things are a blatant reminder of how quickly this could all change and the independence I might lose. One of my biggest fears is being a burden. A simple thing like planning something in a few weeks instigates a panic attack. This is the journey, this is not new. And then I get mad at myself for any time wasted on stress, but sometimes the grief and fear seep in. I think it's best to try and deal with them in manageable bits instead of letting them fester. Hence the walking and meditating and when all else fails, meds.  It's one of those times I just batten down the hatches until we know more or need to do more and adjust my priorities and keep stress to a minimum. Hahahahah. Optimism. And along those lines- a friend posted this last week and it about sums it up. 
Ironically by- the dry ginger. 

Friday, July 15, 2016

Half way.

A couple of long days, but not too stressful. I am super grateful for the new peds radiologist. He's been really great about working with me, listening to my concerns and the radiation techs- who have known us for years, have been wonderful.

Lily's day started out fasting- since they try to get good images of her belly and that's where the adrenal tumor would likely grow back- it's better to not have a lot of extras in there. We all know how much Lily loves food(what's not to love?) it is a minor challenge. We all tend to get Hangry - so we sat down and went through old baby pictures to distract her. Of course as we sit there, she's sniffling, coughing and says her throat hurts. So just like her mama- she gets sick for scans. Which other than worrying about the breathing and coughing- what do you want to do when you feel sick- lay around and sleep. Not in a cold, hard, loud, tube- but we take what we can get. As we looked through pictures, I found the one that always sticks out in my mind. This is one of those pictures that always makes me think- wow, was that big old adrenal tumor already there?

But we can't wallow or participate in shoulda coulda wouldas. We learn and go forward. Which is why we scan. There is a lot of anxiety surrounding scans and one of the reasons many clinics won't do it- they feel it causes more stress than benefit. I think it is an individual thing- like anything. This is one of those times genetic counselors and a good support staff is instrumental- they help people decide what is right for them in this area. Some find the scans too stressful and  pay attention to symptoms and have things immediately checked out. Since we have been doing this cancer drill awhile- and over many generations- there is some merit to both. Ideally the routine that works with the person's needs and coverage- is ideal. I didn't scan for a lot of years. It was too stressful, but over time I have seen first hand how catching tumors early has definitely advantages in survival. There are still so many unknowns, but I want the best chance for my kids. There will be tumors due to type and location that really not much can be done without damaging quality of life. Those decisions suck. I have one of those decisions in my head. You make those calls at the time you have to with the information you have. 

We get to MRI around 10:30. We fill out the papers since they last a year and it's been a year. I don't think I've never not filled out the papers- but its one of those things- it's almost automatic. I read the questions out loud so the kids can answer. The are you currently pregnant question usually gets fun responses. 

The tech hands Lily her scrubs and takes the movie Lily brought to watch in the groovy MRI goggles. She changes and we go over the plan. There's a lot to scan. She has a dedicated brain and abdomen as well as the full body for LFS screening. They try to minimize the time as much as possible but really want good images- so we know it's gonna be a long day. She said in between each set she will give Lily the opportunity to get up and walk around. I know this adds on to the overall time, there are coils and gear that has to be taken off and reset each time she moves- but I appreciate them taking good care of her. 
off to the races. 

The goggles before they put them on- with headphones, under the head "cage"
Overall, Lily is in the scanner about 4 hours. The peds radiologist comes and talks to me after the first round, it all looks good so far and then each subsequent round. We talk a bit about LFS and things I've noticed with Lily and through others' experiences just to help him understand my concerns. He has a 10 year old and it shows, he is great with Lily and great with me. I appreciate the extra time and care. Most MRI facilities are really busy, Tripler is exceptionally so(lots of active people and dependents) and they are down 1 machine. They brought in a portable out in the parking lot- so patients periodically come in, change and head out back. It reminds me of my very first MRI when I was 15- in the parking lot of the hospital. 

Lily comes out a few times- they had to run a couple sequences over- which in MRI world means starting over. The cold is definitely a factor and I feel bad for her- but she is doing well. We walk up and down the hall and I rub her back. Then she gets a bit of a reprieve- the system has to reboot and so she plays on her iPad for a bit. As she goes back in, the doc comes and we talk about her arm. We've been watching a spot for years in her humerus. We kinda forget about it in between scans and then it's like ripping a scab off- oh I forgot about that. This is one of the gray areas. You find things that could be normal weirdisms you'd never know about- or it could be the beginning of something. In LFS we tend to err on the side of it could be something and out is better than in. But that works well for superficial lumps and bumps- once you get deeper- you have to start weighing benefits and risks of digging around. He would like an Xray to check. I used to freak out about X-rays- but I know that it will give him different information than the MRI and it is better to see bones with.  I ask- if it doesn't really show anything are we going to come back and look more with MRI and should we do a more dedicated MRI since it has grown a couple millimeters and she is in there and we still need to look at her arms? And this might be the point he starts wondering what he got himself into with us. So I explain- we grow weird. That certain cancers seem to pop up at certain ages in LFS. On a normal person I would be ok saying"it's a cyst" and maybe monitoring it- but in an LFS kiddo with a history of 2 cancers already- I would be more comfortable with more information especially if we need to decide to biopsy or remove it. I explain how the sarcoma in her leg and my arm really never concerned the docs and it was at my insistence they were removed. It happens a lot in our group of mutants. And with hormone changes and this age- I need to know more. I want her oncologist to have more information. He orders the dedicated MRI. The tech tells me she saw the Mallory's were on the schedule and took leave for the rest of the week. I joke she should know- Lily's not the easy one- she shoulda taken Bella or Kiera. 

Lily is done just in time for her hearing aid appointment. Which luckily is just down the hall. We enjoy a little Chopped while we wait for the audiologist. She's getting her new streamer so she can pair her hearing aids to blue tooth and use them as headphones. It's actually pretty cool and she is stoked. 

rocking out to Katy Perry. Roar.

We head back to radiology so we can look at the images with the doc and squeak into the Xray. It's now after 5 so the hospital is quiet. I like this time in the hospital. And I know traffic is a bear- so no rush to sit in it. I feed Lily a pop-tart from the vending machine because I know she's starving. The spot in her arm is bigger than I like. Definitely want to discuss this with her onc. She is fascinated by her insides. Her left adrenal looks good, a couple other areas I was concerned about look good. I feel positive overall. We head over to Xray. 

The tech wants to know which part hurts. I tell him they saw a spot on MRi and we are cancer screening. His bedside manner instantly is more genial. We finally are done for the day. I read half a book, my head isn't splitting, I've managed stress and lily did exceptional. I thank her for doing this and she gets to pick dinner. 
Chili's- Root Beer and games

We get home and pretty much crash. I had been patting myself on the back for how well I handled it-and that I was feeling pretty decent and then the exhaustion hit. I woke up Thursday feeling pretty awful. The debate- do I go back to bed or get on with the day? I went for a walk and called Monica for a mini mom melt down. I wish she was next door still- but telephone works. She reassures me that I'm allowed to be exhausted and tired and it will be fine. Sometimes you just need to hear it. I take it easy as possible until afternoon activities. We take Phillip to work out, Kiera to voice lessons, a quick stop at Walmart for necessities and a movie for Bella in the scanner- she's a huge Divergent fan and the Allegiant was out on DVD. We pick Phillip up- drop him and Kiera off- they will take Lily over to Aunt Theresa's for dinner and Bella and I are off to Tripler. 
1st non sedated solo MRI- rocked it!
Bella is milking the hunger thing- and suffers from my nervous bladder. I think we stop at every bathroom. We fill out her forms, change her into scrubs and she and Ducky are ready to go. Ducky gets a quick check in the metal detector and is approved to ride along for the MRI. 
Bella and Ducky- a special stuffed comfort made by her friend Sophia. 
I like the quiet of evening MRIs. Except for the construction and the noxious chemical smells that are coming from down the hall. Fortunately they only work until 6 and it fades when they close the door. The tech pokes her head out and says Bella is doing amazing. She even passed up the first break.

Bella and Ducky

 She comes out a couple times after that and we walk down the hall and get a drink. She is so much more relaxed. I'm glad it wasn't as bad as she feared. She wants to see outside, which I find fascinating. We walk down the hall and I warn her it's dark out- so we can't see much. Overall she was pretty quick- less than 2 hours in the scanner. She is the shortest one- so that helps. Phillip is gonna take AWHILE. She picks Taco Bell for Dinner so we make a run for the Border. We chase that with a McDonald's ice cream cone. I thank her for going through it. I know it's not normal, easy or fun and I appreciate it. I'm impressed- I knew she could do it- I'm glad she did so well. 
Proud of this Kid!

Tonight is Phillip and tomorrow morning Kiera. Phil has Phillip duty- which after an overnight alert shift last night means he'll probably get a good nap in the waiting room. 

I don't expect to hear about the kids results right away- hoping maybe to catch up with the radiologist on Saturday. I'll give him time to make the formal reports and call the oncologist next week. Thank you for keeping us in your thoughts, I definitely appreciate it.

Sunday, July 10, 2016

The Quiet Before the Storm

I'm hoping there will be no storm. Really really really hoping.

I've gotten a couple concerned messages and calls because I've been quiet. It hasn't been quiet here, so I guess I lost track. So I wanted to post a quick note. Part of it is I feel like I am surrounded by people who are all fighting their own battles and I don't want to add to their stress and part of it is I don't feel like a very good friend right now to anyone. Which bothers me a lot. I do appreciate vacation posts on Facebook and celebrating all the fun normal many of my friends are experiencing this summer virtually and my heart is aching along with many who are going through tough things. I wish I could do more.

Tomorrow- Monday is my PET/CT scan. yaaaaaaay. It's either good or bad- I can't predict it so I won't. My mom asked how I was feeling- and other than this cold I've acquired- most likely due to the stress and MRi last Friday- I can't say I have any major flags. All my concerns could be old age, weight related, or cancer. I already know I'm old in LFS years, I am overweight and I have cancer, so the bases are covered.  I feel pretty good. I miss normal. I miss waking up and not wondering if this is a normal ache or something ominous. But I also know I have it pretty good and I would like to keep it as stable as possible.

The kids are doing well and we had a few physical and emotional hurdles to overcome this past week. They tend to sense my mood and I have definitely been in a funk.  We had a wonderful 4th of July in town. I was worried Lily and I would both be extremely saddle sore, but we were good. For Christmas, she wanted a horseback ride. Timing between treatment and life has been difficult. Nothing like scanxiety to inspire me to get stuff done and this was top on the list. It was truly a great experience- back in the woods of the North Shore, there were moments I felt like I was back in Colorado and moments my hips hurt so bad I wondered if it would be frowned upon for me to get off and walk- but I was pretty sure I would break something on my dismount so I kept stretching my legs as much as possible on the giant beast named Rascal that was tasked with my baggage and liked to walk into trees. Lily's horse Jewel, which she spelled Joule(tickled me to no end- a measurement of energy as this horse was very easy going) was a perfect foil to her personality. Laid back and stopped every 5 feet to nibble. Lily asked if this was what it was like taking her anywhere. I laughed.

On the way to the horseback ride we stopped off at the favorite beach of one of our little friends who cancer took from us. We remembered Ryan who we didn't really even get to know because of cancer. It was also the 4th anniversary of our clinic friend Abriana's death.  I remember the year, because I found out she passed when we were in Colorado for the 4th of July after my surgeries. She was an amazing little fighter, much like our friend Haley who also died the first week in July 2 years ago. I think back to Lily's Chemo independence Day party 7 years ago and how I knew we were never going to be independent of Cancer but that we needed to celebrate. We need hope. I never wanted to imagine a world without Lily, although as a cancer mom, you try to prepare yourself. So when I think of Anita, and Amber and Wendy and how much they miss their babies- I know I can't even fathom how much their hearts hurt, but I can remember their wonderful children. Just like we remember Bob and Eric. Grief is just heavier some days and you carry it. And it is cumulative.  It was much heavier this past week. So it was a good time to make some memories.

After my MRI- the technician talked to me about the kids' scans coming up this week and that there were some sequences added and they would be longer. They typically take 2-3 hours- which although not fun, is manageable. We are now looking at 4-5 hours. This is the first year Bella is trying non-sedated. Sooo, I've spent some time this week and weekend trying to touch base with our radiologists and some of the LFS experts to try and see if we can phenangle a more efficient routine.

I know it can be done, it has been done at other institutions. It's just a matter of connecting our team with the people who have already done the legwork. Times like these I am grateful for military healthcare- the specialized care and their willingness to work with our rareness is impressive. I know so many mutants who fight and fight and fight to get coverage and screening. I feel bad complaining that our screening is too long- but that is part of the reason many can't get screened- that much time equates to $$ and without a protocol- many radiologists are hesitant to stray off the standard path. I am grateful I chose biology as my major and can understand a lot of this going in. Sometimes it's a curse, but overall my college education has paid so many invisible yet tangible emotional dividends.

I think that's one of those things that you don't understand about cancer and LFS until you live it.  The need to research, the need to find out information and the amount of time spent advocating for yourself or your kid on a daily basis. For care, for school, for work, in general and then to put on the smile and try to be normal. Because at the end of the scan - this normal could be flipped and although you have to prepare for it, you can't so you have to keep busy and hope for the best.  So we have a storm of scans this week. I'm trying to harness the quiet in thoughtful preparation and visualizing good results.

Lily Kay Monkey

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