Wednesday, June 26, 2013

Adrenaline Rush

The adrenal glands are pretty amazing organs. These lumpy glands perched on top of each kidney like a floppy little stocking cap are responsible for producing hormones that control the body's use of carbohydrates, fats, and proteins, that suppress inflammatory responses, maintain blood volume, blood pressure, balances of salt and potassium and all the processes associated with epinephine(adrenaline). Fortunately these steroids and hormones have been manufactured by humans and are a decent substitute when adrenal function goes awry.

4 years ago this week, we reached the end of Lily's chemo routine.  The in-patient admissions found us facing many of the ups and downs of these alternately life saving and life threatening treatments. During chemo- patients are routinely given megadoses of steroids to try and counteract some of the dreadfully stressful physical responses to the toxic chemicals being administered. We knew going in that she was going to lose her adrenal function- that was the exact purpose. As in many chemo regimens- the hope is to kill off the bad cells before the good ones quit. Concurrently and then after the in patient program- we gave Lily mitotane- a chalky bitter white pill that promised both to kill her cancer and her adrenal gland. Within months it succeeded- although it was difficult to tell which symptoms were from the new adrenal insufficiency and which were from chemo. So in addition to giving her that- we then started her on corticosteroids.

When the chemo stopped, we found our routine. Her platinum blonde spikey streaks coiled back into the brown ringlets we loved. Her cheeks filled out again, her belly rounded. She gained energy and some new emotional ups and downs we worked through- always wondering- is the dose right? Blood tests give you a ballpark- but I learned from a support group online- all of our kiddos experienced many similar emotional ups and downs that correllated with their need or overage of corticosteroid substitution. Experienced doctors looked at us puzzled- that wasn't in the literature. As much as I respect a good scientific read- it neither lives, breathes or screams how much it hates you and that you are the worst mommy ever while stomping upstairs and continue with a gutteral moan for hours. You'd expect this from a 2 year old- but not a 6 year old. At least not a 6 year old in my house- this type of outburst is not tolerated. Life can deal you some sucky hands and no 3 year old should have to face what burdens were placed on her little body- but tantrums are neither productive or healthy in this crazy healing process. Her doses of Hydrocortisone have gone up and down and back up- based mostly on her weight with consideration of how her bloodwork panels look. During sickness- she has no adrenals to signal a need for balance fluid levels- conserve energy or regulate blood pressure- she can go from sick to crisis in a matter of hours. We've seen a couple. Fevers and flu land us in the hospital to be on the safe side. We've come too far to go down like that. She also take fludrocortisone- it is responsible for the mineral hormone functions. It is this tiny little pill that she takes half of- sometimes in summer we up it to a whole pill to account for the stress on the body induced by heat and sweating.

Every 3 months or so we do bloodwork. Usually it looks good. A few months back there was a blip. A normal appointment became a team conference with Oncology to gameplan an approach to this issue that could be  endocrine or oncologic. Neither option was rosy- if it was endocrine- it meant that Lily was starting puberty at the ripe old age of 8. The household 12 year old is not yet equipped for this change- the thought of going over these issues with a younger kid is a little daunting until you consider the life threatening and dismal option that cancer may be back. Boobs and a period seem like good trade overall- regardless of age. Scans were had, more tests, more bloodwork, 24 hour urine collection and then another to compare- good times had by all. None of the results pointed at oncology- sigh of relief- although given our propensity to sprout malignancies and our astute, thorough team- that is not good enough. We considered the possibility that her left adrenal gland was trying to work- against all odds- against bombardment by toxic chemicals and then 4 years of supressive replacement therapy. The organs are pretty smart- they have lots of checks and balances to make sure they aren't doing extra work. If you plug in a bunch of hydrocortisone- the adrenals might just go on vacation. You then run the risk that they will like the vacation and grow too lazy to go back to working. For someone like Lily- the replacement steroids are because we were pretty certain her adrenals were not going to work again, ever. After a conference- our endo asks a few specialists what their thoughts are. She hears that it isn't unheard of for adrenals to come back- the body is amazing. You just never know. And we never do.

SO the call came last night- our endo would like to cease the fludrocortisone immediately- we need to do a corticosteroid stimulation test to see if her adrenals are really up to the challenge. It will involve bloodwork, injecting ACTH- which stimulates the adrenal to produce cortisol. After an hour, her blood will be drawn again to see if it's trying. It's a wonderful and scary proposition all at once. It's a rare gift I never really considered- it wasn't really on the table. I'm not sure how to approach it. I am excited at the possibility of a more normal day to day routine- I don't think we'd be out of the proverbial woods with illnesses. I am elated that she might not have to be dependent on these exogenous man made chemicals- with her already taxed and mutation prone system. I am hesitant to get my hopes up and then have them shattered. I worry that she's headed towards early puberty which means a lot of extra hormones that could potentially bring more cancers. But then I remember this gift is just that- an opportunity for more. It is an opportunity I didn't think we'd ever see as I laid by a sick little monkey just cherishing every moment we had. Each day is a gift and each challenge is an opportunity for something we didn't consider but could be amazing. I've never been much of an adrenaline junkie- but it looks like we can't rule out Lily monkey's chance at being one quite yet!

Friday, June 21, 2013

Life in the Triage Lane: A Lymphomaniac Tale

Last week, the beloved husband was gone. When he's gone- I make feeble attempts at being fun parent instead of boring, rule making, chore staking mom. I try to spend time with the kids in a fun way, for my own sanity. I let the dishes pile up, I get a little behind on laundry and we do something fun. On top of that- we always try to do something crafty, educational or helpful. Our fun event was driving to the other side of the island to go bodyboarding at Bellows. We live by lots of beaches. Beaches and waves- like other geographical locations- have their own personalities. We have a great beginner surf spot right down the road, the North Shore is known for it's epic breaks, while Bellows is known for it's breathtaking views and bodyboarding.

I load the kids in the car, with the associated bags, toys, boards, coolers, towels- for beach and post beach showering- as we were taking dinner to a friend after our fun- that was our helpful event. Their life is complete chaos right now, as not only do they have a 2 year old with a metabolic disorder who needs round the clock nursing care- they are living in the front room. The back rooms are off limits while construction is going on to make room for an accessible shower and bathroom- to make bathing their not so little munchkin a little easier to manage. Her husband- was with mine- off simulating something or other- someplace other than here. I always enjoy our visits, even though they are few and far between with our schedules.  I feel we are kindred spirits- yet it also offers me a healthy appreciation for how less complicated my life is comparatively. It is important to me, for the kids to understand that. No matter how hard life is- there is always someone who is struggling more. Plus partly it is selfish- it feels good to help. I hope to, in any small way I can impart that on my children.

Somewhere during the downpour through the lush H3 , hoping the rain was stuck to this side of the tunnel- I noticed my right index finger was swollen. It is not unusual for the fingers on my right hand to swell, although it's usually the middle and ring fingers that hang on to the puffiness. We went through "training" about lymphedema after my surgery- any time you have lymphnodes removed or damaged- there can be swelling.  The lymph system is like a freeway of vessels and little oval balloons that can capture and flush bad particles- germs, bacteria, cancer cells. It is one of those underappreciated systems- it gets no props until it's gone. We have over 500 lymph nodes throughout our body- so when they removed 6 from my armpit- I pretty much thought the lymphedema panic education sessions were overkill. Phil and I laughed hysterically as the lymph nurse wrapped my arm in no less than 4 layers of varying thickness and compression- overkill. I pay attention to swelling and spend a lot of time elevating and massaging the fluid back to another route where maybe another highway might pick it up and send it away- I rarely use my compression glove. I avoid injury- but let's face it- I'm a busy right handed klutz- I've burned, banged and had monkeys hang from my arm. Heck I have a huge scar for the dang lymph to navigate around- I assume that's usually the problem and Phil and I have perfected a massage route to get the swelling back around it. So on our drive- I start trying to massage the fluid out of  my finger and notice that the knuckle hurts. I don't see anything and the swelling causes the joints to ache anyway- plus the rain- I continue massaging without much benefit.

We get to the beach and although it's not raining, I can see some threatening clouds way off on the horizon. Now- I generally laugh when people run off the beach when it rains- if you are there to swim- it's just a bonus water feature. But- it can kick up some waves and I am flying solo with the kids- I don't want to have to go all Baywatch today. I strap Bella in a life jacket and the 5 of us jump out into the waves. They are pretty good size and Bella seems to take off on the bodyboard like nothing. Phillip is fabulous and helps her make her way back out to catch more and they race in. Kiera catches a few and hands the board over to Lily in exchange for goggles- she's checking out the sealife. I prefer not to know- I respect it's their home. Lily is a fairly fearful ocean-goer. I get that- but at any given point- I have a huge monkey clinging to me while being lambasted with chest high waves or trying to give her a shove so she might catch a wave. The ocean senses our lack of comfort with her and they are not easy to come by. I finally just follow which waves Phillip throws Bella into and we have much more success. She catches 2 and we are on our way back out when I see a huge one- we spent a lot of time learning which waves were big enough to jump over and which ones you you just have to duck under and get past. You can try to jump- but then you are forced to go with it. It occurs to me how much this fun activity is like our life. The waves, ebb and flow- triaging which waves can be handled and when you just have to duck and cover. Sometimes you just have to jump into the wave and go where it takes you- sometimes you know it's not the right one and you wait for the next. This is the one for Lily.   I flip her around as we feel the big pull- I give her a shove and she takes off ,I can just see her start to flip when the next wave rolls me. I end up somewhere near her and hear her sputtering while I figure I won't have to use a neti pot for awhile- I just had a full sinus rinse. I start laughing and see all 4 of my kids in various states of drowned rat. Phillip yells something that I'm pretty sure contained a word he's not allowed to use- but Lily is starting to freak out. I know we have to go do another wave or she'll let the fear of the tumble fester- gotta get back up on that proverbial seahorse.  We catch 2 and everyone could use a break- we head to shore for snacks.  As I look out- there is an ominous sheet of raining moving in from the ocean. We decide to try and beat the storm and load the car up and hit the showers. While we are finishing up- the rain hits and throngs of beachgoers are headed our way.
We have a nice dinner with my friend and despite all the times I wonder if I am getting through to my kids- they all spend time helping- walking the dog- reading the baby a story- Phillip even offered to mow the lawn. We finally head home and on the drive back- my hand is aching and now 3 fingers are swollen. It doesn't surprise me- I'll deal with it when we get home.

Friday is a busy day- all of those things I let slide, laundry, dishes, need to be done- Phil will be getting home that evening. I don't have time to elevate or stop for the swelling in my fingers- so I retrieve the smallest of the 4 layers of the wrapping technique and wrap it up. I go about cleaning and laundering and the day passes. When I unwrap my hand- I have a nice ace bandage checkered pattern down my finger- it seems a little red- but it was wrapped pretty good. Mostly I'm excited Phil is going to be home.

Saturday we wake up and my finger is more sore. It feels like a splinter or something is in there and it's still red and puffy. Phil asks if I was stung by a jellyfish. I don't think so- plus it was sore before the beach. Maybe a piece of coral? As he learned surfing- even a tiny piece of coral can lead to lots of pain and swelling. I decide maybe this is a possibility and grab a lancet and try to surgically assess the issue. There is a bunch of clear fluid- but nothing- not relief. I clean it and slather antibiotic on and wrap it back up. By evening it aches and I notice there are more red spots on my finger and few small pink patches on my arm. We are upgrading to rash watch. My arm starts to ache. I don't like the patches and I don't like the creepy way it seems to be moving up my arm. Mostly I'm worried it's gonna creep it's way to the land of lack of lymphnodes and that doesn't seem good. I did like instructed- elevated- wrapped- although not in michelin man style- I was taking precautions since once lymphedema starts- it generally can't be reversed. Phil and I decide if there is no improvement on Sunday- I will go in to the dreaded doctor. Seeing as Sunday was Father's Day- I was pretty much not going to go in. But I felt pretty crappy. My stomach didn't feel right and I had a slight headache. I decided if Monday there was no improvement- I would go in. See a pattern?  That's generally what happens.

On Monday, I started the routine of transporting the kids to their various activities and got home for a few minutes rest before heading back out. I stopped in to see my neighbor, who looks at my arm- shakes her head and demands that I call the doctor now. Ok, I say and go home. I wanted to get a quick workout in , but decide to call and make an appointment. The earliest they could see me was wednesday- maybe it would be gone by then. My neighbor knocks on the door and is greatly displeased that I am not seen urgently- I refuse to go to the ER. She says she is picking up the kids- I need to go get it looked at. She's decided I have thrombosis. I know it's not a rash because it hurts and there has not been any itching. I head to the acute care clinic.

By the time I get there and show the triage nurse my creepy rash- It has worked it's way up to darn near the lymph lacking section. Crap.  On my intake I put that I had lymphnodes removed and was worried about lymphedema. I was pretty sure that would get me a fast track through triage.  She looks at my arm and makes that puzzled face- did you have a mastectomy? She asks. Yes, last year. And they took Lymph nodes? Yeah- only 6 though. And now I have a healthier appreciation for the lyphomaniac highway. A normal little something or other has now become an arm long problem. You are awfully young to have breast cancer? Yeah, we have a family cancer syndrome. Oh, like that Angelina? Sort of- except she only has to worry about breasts and ovaries- we have to worry about brain, breast, every organ, muscles and all bones. Wow, my first husband died of a brain tumor when he was 36. It was very hard. I nod, my brother and dad both died from brain tumors, it's a horrible way to go. We commiserate.  She finished all the relevant questions and tells me to hang tight- she'll get me right back. I don't know if it's because I'm a bonafide triage or if I unwittingly punched the cancer card. I watch the tv in the waiting room from my seat. It is explaining how triage works.

Triage was a concept initiated during the Napoleonic wars- when tough decisions had to be made regarding life, limb, and resources- it means to sort or select. The French term became an American one during WWI. There were not enough resources for all the people that could be saved- much less for the ones who weren't going to make it. Nowadays, emergency rooms and mass casualty situations use triage. The acute care clinic- although not an emergency facility- adopts the system. It makes sense and makes sure the most severe cases are seen first. An hour could make a difference between life and death for a potential heart attack but not so much for an ear infection.  I sat thinking about it and thought how I felt like I was living in a state of Triage. Most people call it prioritizing- but with the medical elements of our day to day functioning- I am going to call it Triage from here on out. I feel like there is only time for the shark closest to the boat- that I am treading water- waiting for the next shark. I think this is a common problem when you have a chronic condition, disease or family cancer syndrome. You are constantly trying to decide what issue is life or limb and what can be neglected. Kids schoolwork gets triaged for medical care. Mom's mental health care gets triaged to the waiting room because the physical care is more urgent. I didn't have much more time to ponder my life in Triage, because I was in fact on the fast track.

The doc came right in- took a look, made a puzzled face, commented on my low grade not-quite fever(hadn't noticed that) and decides a hearty antibiotic course is called for. I feel deflated. Of course I didn't want to hear my arm needed to be amputated- but I feel like the course of antibiotics is the easy box to check. Yet- it occurs to me-  I rush to wonder what oncologic problem might be presenting before ruling out a bacterial one. I should know within a day whether or not it's bacterial. Especially since the orders are for a shot in addition to a 10 day course. I guess it was pretty serious after all. I googled cellulitis. Huh, what do you know? That's what it looked and acted like. A little bit of bacteria where there is a lack of lymph nodes is like taking down one lane of a major highway- things still work- but there is a big jam. Unfortunately- my treating the lymphedema- probably exacerbated the situations effectively limiting the lymph into my hand to carry away the bad bacteria- and pushing bad bacteria down my arm. I'm pretty sure this shiz was not covered in the how to wrap your arm like a michelin man sessions. This is probably considered advanced lymphucation. I know this would fall under the category of- do not injure the lymph node challenged hand or arm- advice that was given. It makes me wonder how so many women function without any lymph nodes due to cancer or radiation treatment. But as with anything in life- we learn from experiences- and this yet one of hopefully many journeys down the lymphtastic freeway. Have you thanked your lymphatic system lately?

Saturday, June 1, 2013

The Importance of Anniversaries

It's June 1. The school year is finally over. The mad rush is dying down- as much as it ever does in a household with 4 kids. I was in the midst of making dinner one night this week when I hear the fedex truck pull up. At the end of last week- during Phillip's 8th grade ceremony- all of the 8th grader's bags were unceremoniously dumped in a back room. When Phillip returned home- his glucometer was missing. We went over" the last place you know you had it drill"-lunch. Being the astute mom- are you absolutely positive you took your blood sugar at lunch? Yes. I mean it- if you didn't we'll talk about that later- MOM, I DID! Ok. Back to school to check- nothing. Tore up the house. Nothing. Time to dig into the emergency kit and break out the old glucometer. This just also happens a day after I get a call from the Pump/glucometer distributor saying that they are no longer contracted with our insurance. That makes sense since we are no longer contracted with our insurance- the military switched providers. I give them the new information- nope not contracted with them either. A day spent making various calls ending in - we'll get back to you.

So our endo nurse- who is just a beautiful, wonderful angel. She is truly one of those people who you call when shit hits the fan and she throws glitter at it, sprays the air freshener and helps you get done what needs to be done, making your life easier. She finds me a number of the manufacturer and says give this a try. I try. They are nice and unconcerned with the insurance as we are allowed a one time replacement for loss or theft and we have not used it yet. She apologizes that it won't be delivered the next day- but probably in 2 days.

So when the fedex truck rolls up- I'm thinking- dang- she made it happen in a day. Lily comes to the back yard carrying a big square box. I just put the chicken on the grill, the weather has finally changed and it's too hot to cook inside.  I know it's not his glucometer- because the box is too big and the glucometer would have had to been signed for. It's a package from my mom. Lily is literally vibrating. We go inside and open the box. Inside are 2 scrapbooks- one Jen and Dad themed and one Jen and Bob themed. I have been asking for photos for years and I am excited to look.  I start to flip through Dad's album. I feel the gaping hole in my heart which always feels a little extra gapey in May, start to fill in a little. Memories of day to day fun, special trips, pieces of a happy past when I was a kid and carefree and the possibilities were endless. There are a couple goofy pictures AD- after diagnosis- and I remember the great talks dad and I had during the last few months. Smoke pulls me from my reverie and I run outside to flip the chicken. The grill marks are a little heartier than the kids like- but it will be fine.

Lily has been patiently waiting. I let her look through dad's album with the instructions that- I can't answer questions now- I'm making dinner but we will go through the album together after dinner. Being the pragmatic child she is- she waits and merely looks over my shoulder- she and I both know she will have lots and lots of questions. I want to be able to answer them. In that way, these albums are an extra special gift. It gives me jumping off points to share my past and their grandpa and uncle with them. I flip through Bob's album. Lily sneaks off as- there are already so many questions she wants to ask.  There is a copy of a "Bob's future" paragraph that he had to write for a class. It talked about lamborghinis, so I call Phillip to read it- since he shares his uncles love of the car. I told him awhile back that Bob used to have posters all over his room, I doubt he remembers. He is reading while I am flipping through pages and Lily is looking on. I get to the second to last picture. It was my birthday, 2 months before Bob died. We were in his hospital room, he is swollen severely from steroids that ironically are keeping the swelling in his brain down. I remember mom telling me the story about how adamant he was that he go get me a birthday present and how hard it was to get him down to the gift shop and how he struggled with the choices. It was a little porcelain unicorn with a gold horn. And like that my heart bursts and shatters as the memories of love and loss break through the walls I set up to get through each day. The days past causing chips and gauges every time someone asks- do you have siblings? Watching lil Phillip do so many of the same things Bob used to love, with his big dreams and big heart. The tears come with gasps and sobs. Phillip hugs me and takes out the trash. It's the only thing he knows to do that might help. Kiera peeks to see the commotion and quietly retreats- she's not comfortable with too much emotion. I distract  myself with dinner- trying to salvage what's left of burnt chicken.

I think it's important to feel the loss. It is present every day for me. It used to be that every time I went near a hospital- I felt that loss- but now it's become such our routine- I just feel the exhaustion. Such is mending. It's work. I don't watch sad movies. I can't. I've felt so much sadness- I can not elect to go back to that place for entertainment. I don't need to. The anger pops up at times, and I work hard to direct that towards making positive change. A few years ago a friend's daughter died in May. Her death sandwiched between the anniversaries of Bob and Dad's death. I talked to Phil. We were still relatively new here, I didn't have a lot of friends and this lady was someone I could relate to.  I could not possibly go to a baby's funeral in May. It would be hugely inappropriate for me to take my grief out in public at a child's memorial. It was not fair to anyone.  He would have to go and explain. Of course. My friend understood. We are better friends now. She is one of the few people here that understands what it is like to care for a sick child and she has endured a loss I hope everyday that I am spared. As a mom now, I am offered a glimpse of the torture my mother went through watching my brother get sicker and sicker. When your child is injured or diagnosed with a life threatening illness- you try to prepare yourself for the eventuality. I am convinced that there is no way to ever be prepared for that loss. So I try to go easy on my mom- when she niggles me about cancer screening on Mother's Day- as I am her baby and she is still doing everything she can to stave off that eventuality.

But the memorial anniversaries are important. It gives us a window to feel the pain and loss with a contained limit, staving off consumption. It gives us an opportunity to remember the good times, the life, the love. It also gives us a distinct time frame to feel it and the opportunity to contain it once again and put it away so that it cannot consume you. It truly is the stuff fairy tales and ghost stories are made of. Human emotion, fear, loss, love, strength. Once a year, the time when the demons are allowed to roam free until they are vanquished to the underworld so everyone can carry about normally.

Lily Kay Monkey

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