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. 

 

Back to School Routine

Somewhere along the line, July became synonymous with Independence as well as the looming chaos the impending school year presents. Most parents fret about the projected expenses of school supplies, new clothes and all of the impending "activity fees". For us the stress is associated with Back to school scans- Back to school endocrinology appointments- back to school physicals and the emotional cost each one weighs on the entire family. I wish hunting for the elusive white eraser, no pink ones allowed caused the bulk of my anxiety attacks and driving around town. As the 2 weeks dedicated to scans, hopefully comes to a close tomorrow- I've noticed everyone in the house deals a little differently.

Lily is a little roller coaster- as her trying to function adrenal gland and administered cortisone dose compete to see which can turn her into the little purple hulk the fastest. She's happy, then sad, then afraid then really angry. It's a Bipolar Princess on Parade and it all happens in the span of minutes and instigated by something as simple as a sister touching a toy that laid dormant on the living room floor for the past 72 hours. She talks a lot and says hysterically inappropriate things. She is a stickler for routine and it is important to gradually ease her into change by implanting ideas bit by bit. Although springing new ideas on her diminishes the amount of time spent harboring endless questions about every possible contingency- by giving her short notice- you run the risk of activating the purple hulk which sometimes has exponential collateral damage.

Bella is a freak show on wheels. Considering the mighty mite spent her entire toddlerhood napping in hospital beds, cots, or strollers in Tripler- I expected her to be a little more nonchalant about being the patient. Based on her trip to the doctor for her presedation physical- I figured she might revel in the one on one attention- even if it might be accompanied by an IV.

 I did not expect for a better part of the week prior- for a red flash of lightning to randomly bolt in an out of the room with the count down of how many days until she had her MRI. The night prior- she ran back and forth in the back yard screaming- My MRI is tomorrow and I have to get and IVVVVVVVVVVV!!! I don't have any idea why we are considered the closest thing to the Addams family as you can get in our neighborhood. That being said- she was an absolute rockstar(according to dad and staff- who attended the IVVVVVVVVVVVVVVV placing party- I was at home preparing the other 2 for their MRIs and followed in trail.)

Kiera talks. And talks and talks. And vibrates a little. And giggles inappropriately. She will tell you story after story that she cannot even get through because she is giggling so hard and none of it even resembles funny- at least I guess it might be funny if it wasn't utterly incoherent.  She is very brave and much like her mom tends to internalize discomfort- emotional or physical and dreads the unknown. All of theses scans are filled with unknowns and her giddyness betrays her.

Phillip acts tough, walks tough- does the whole apathetic thing- everything's cool and he would have gotten away with it too if it hadn't been for that meddling MRI. That and I made him check his blood sugar before the MRI- are you stressed? No. Are you worried about the scan? No. Is it going to be hard to lay there? I don't know. What's your blood sugar? 293. BUSTED. His blood sugar goes up when he's stressed. The body goes into conservation mode and holds onto sugar.

I don't know if it helped or not that on the morning of the scans the two older kids and I both had interviews for a research study about genetic testing. That is some funny schtick right there. Now I try to shield my kids from the stress of their mutant genes and most of the behind the scenes fodder that goes on in relation to it. In a 1700 sq ft house- It is tough to find a quiet spot away from anyone for very long on the phone. I try to not talk in front of them- but I never how much they actually overhear or interpret from beyond the non insulated steel framed walls. With the business of doctor's appointments and scans- I never had the chance to talk with them about what the phone call was about. So when Kiera woke up- I gave her a brief idea and told her just to answer the questions honestly. Before I could wake Phillip up- the phone rang. So when the interviewer asks- which child to talk to first- I said- the awake one- although in the case of the boy it probably won't make much of a difference in his helpfullness. Kiera gets on the phone and although I can only partially hear the questions being asked- I can tell I may have been wrong- neither of these kids might be particularly helpful. Not that it is a bad thing- it means I may be shielding them a bit better than I thought. Now we are looking at the other end of the pendulumic swing and I will probably have more questions to answer after this call. Here's the gist:

Do you know what genetic testing is?
K: No
Ok, genetic testing is.......yadayada..does that make sense?
K: Yes
Have you had genetic testing done?
K: No
Has anyone in your family had genetic testing done?
K(looking at me- I point to me and Lily- she nods)- yes my mom and Lily.
Do you know why they had genetic testing?
K: For cancer.
Do you know when they had genetic testing done?
K:no
When did you find out about their genetic testing?
K: Just now.

Oh yeah- this is happening. I start laughing and figure out it's best for me to leave the room, wake the boy and brief him on what's going on. I swear to god we have talked about this stuff, a lot- over dinner- they have sat through so many damn appointments and visits with oncologists- it makes me want to bottle the tunnel vision of youth and bathe in it nightly.

Phillip manages to answer the initial questions a little more assuredly. Although he too pointed out that he just learned all this stuff this morning. We really need to work on poker faces. The line of questioning goes towards screening and what they have done and he looks at me and gives me that squint- that squint you get from a child when one part of that tunnel vision opens up and they start to see the outside world. Scans have been presented as something we just do- like going to the doctor for a check up- getting your teeth cleaned. It just clicked that we are getting scanned to look for cancer because we have a predisposition to cancer and early detection saves lives- the 13 year old translation of this is: We get scans to look for cancer because if we catch it early we can get it out and live. And right then another chunk of my heart rips open- because no matter how much I want to protect them from this truth, it is the truth and whereas most kids learn to worry about crossing the street and not getting in cars with strangers- kids like mine have to worry about so much more. I wish I could protect them forever- but at some point- around the point they stop believing that a magical man and 8 tiny reindeer deliver gifts for good little children- it doesn't help to sugar coat the truth too much. He answers more questions and I learn how he understands certain scans have different risks and he knows that his genetic test doesn't mean he will get cancer. But how much can a 13 year old really understand? I was just a year older when the whole genetic cancer links were being tossed around in family conversation. Then again those conversations and experiences helped me dive into science and nurtured my love for research and trying to find answers- who knows where and how this generation will be inspired to end this war with cancer.

Phillip goes on to answer questions which I think were about risk and measures we take to reduce our risk of cancer. This makes a couple of answers Kiera said kind of funny- she said I don't let them go near radiation and we don't go through the metal detectors at the airport and we always have to get patted down and that I buy good food at the commissary- nothing that would cause cancer in it or anything. Ah out of the mouths of babes. Of course Phillip said we have scans to look for cancer and that I am always yelling at him about putting sugar in his coffee because too much sugar causes cancer.  I relayed these findings to Phil later who smiled that darn twinkly smile and said- wow- that didn't make you look crazy at all! I remember a certain historical figure being laughed at for claiming the world was round. I stand by the teenage interpretation of my ways- hopefully some day down the road , the bigger picture will make more sense to them. It also makes more sense why Phillips blood sugar was so high- on multiple levels!

Our marathon day was much nicer for the few minutes I got to sit next to Phil in the MRI waiting room. It's not often we get to be together for these events and I so appreciate when we do. I do envy it when I see both parents ushering a single child or two through the waiting room in clinic- it just is so much easier to have your partner there especially when they are well baby checks or easy stuff. But then I remember, like my husband  there are probably precious few appointments these dads get to come to and in any event it is good to see them there. Bella was still being scanned- hers ended up being a 4 hour marathon of sorts. I walked up to recovery with her- where she is very different than Lily in the waking up department. Bella tries to project herself off the bed at any given time. I guess that was the reason her scans took so long- every time the sedation wore off a little- she was throwing herself around. Even in sedation mode- the little redhead is a firecracker- no surprises there. For minutes she is talking- yet can't open her mouth- I just hear noises and see her jaw moving up and down. She then tries to sit up but manages to fling herself into the rails. A few minutes later her lips work and she keeps trying to talk- I'm not as fluent in sedated Bella as I am with sedated Lily speak. It takes a few more minutes before I understand. It didn't hurt at all, the IV. She was really dizzy- she'd open her eyes- I'm dizzy then close them, not dizzy any more, open them- I'm dizzy again. It was pretty funny. I reached for my phone once to video her and she literally sat bolt upright and I barely caught her before she went neck first into the rail , she had limited head control and as her body went forward- her cranium stayed put. I caught her and held her- and she gave me the biggest, goofiest, conspiratorial smile. I want to go. I know- we have to wait until you can move your own body first. Why? Because they have to make sure the medicine wears off.  She smiles again. The words come out slow and I can tell it takes much effort.  You know how you walk...with your feet? Yes I know how to walk. Can you carry me? Yes I can carry you. Ok, Let's do that! Wait a minute- did you just ask for a jail break??  The nurse laughs and goes back to entering data. They must have tomes of funny things kids on sedation say- I should ask next time. Fortunately Belle falls asleep and we go through various iterations of this conversation until she finally wakes up enough to give me this smile...

The nurse is convinced I have Bella's floppiness under control and lends us the wheelchair to go see dad down in MRI waiting. He makes sure I sign the discharge papers-  we are definitely marked as a flight risk. Phil is sitting across from a young woman who looks like Kiera did 2 hours before- like she might vibrate out of her skin at any time. I am regaling Phil of drunk Bella tales and her desire to Jailbreak and he says the other 2 should almost be done. I told him not to hold his breath since Belle took 4 hours- at which point young lady squeaks- it takes 4 hours?! Phil- being ever compassionate- and thoroughly used to stress cases - says- oh no no no- they had full body MRIs- most only take 30-40 minutes. Oh Thank God! And you have 2 more in there right now? Were you all in an accident or something? Most days feel like that- but for us this is part of the routine- this is how we get ready for school. 2x 1.5 hour endocrinology appointments, 3 physicals, 4 full body MRIs, and  1 CT scan. This allows me the medical currency and physician oversight of 2x 504 plans and Individualized Education Plans for medical conditions so 2 can go to school. This gives us a little peace of mind for the time being that everyone looks free of any oncologic concerns. Now I can focus on things like - books and supplies and clothes because all of that only accessorizes the things we need to accomplish to make sure the kids are ready to learn.  Mostly I am grateful to pay the emotional stress toll for these 2 weeks of scans because now they are done and the kids get an all clear!

Clean Scans

Lily had her MRI's and CT last Monday. As soon as it went up on the calendar, preparations begin. Lily talked about how the dart hurts. And she still feels the IV go in, but she feels weird. I let her know that just getting the IV is an option. She is understandably distressed as she has had several bad experiences. Sometimes I am baffled by her, considering she was practically sliced in half and had a huge chunk of calf removed - in comparison a poke is pretty minor. But then I remember that to monkey is only 8. Most 8 year olds have limited experience with any of it and 8 year olds are not considered with the relative pain scale- they are concerned with pain and any needle- no matter the purpose is pain. Lily is logical. I remember when Phillip was little- he didn't respond to time outs as much as if you sat him down and reasoned with him. The key with Lily is timing- if you broach a subject too soon- the OCD kicks in and she obsesses for a long time and the issue becomes larger than it needs to be. Not enough time, she can't prepare herself and fit it into her view of how things work. So I've learned to ask her questions and let her figure it out.  So I ask her what's the worst part about the MRI? The poke. Ok- we can't get rid of the poke- but what can we do to make it quicker? Well the one time they poked me like 5 times and it hurt a lot. Yes and we WILL NOT let that happen again- I have made that clear- I talked to the nurses and they know you are not a pin cushion. What's a pin cushion? Clearly mommy has not had much time available for sewing lately- a thing that holds pins. Like the red ball thing? Exactly. I don't want to be that. So what if you just get the IV- then you don't have 2 pokes? But what if they don't get it? That could happen. But remember the pokes are quick and what if they do get it the 1st time- then it's only one poke. If you get the dart then there has to be another poke for the IV. Hmmm. I don't know. It's Ok, you can decide when you get there. What if they don't listen? That's why I'm there, to make sure they listen. Ok.

2 days before- Lily starts eating like she's going into hibernation for the winter. Lily likes food, a lot. Like her momma. All in preparation for the fact that she will miss breakfast. Looking at Lily- anyone would find it tough to believe she's ever missed a meal. Talking to Lily- conversation reverts to either what we are eating, what we have eaten and usually what we will eat next. I come from a long line of stress eaters- my dad most famously buying out an entire supply of bake sale goods the day of my brother's brain surgery- piling plates on the shelf of the payphone in the hospital lobby and alternating between work calls and update calls to family. It is not lost on my that cortisol and stress are inextricably linked and the stress hormone that it is signals the body to hunker down and keep stores in reserve- they might be needed. It's all related.

The night before- Phil announces he will take Lily in and then go into work. Lily hasn't prepared for this, it can go either way. She has a moment of stress and we tell her it's daddy's turn and that I will meet her there. That helps. Except when I walk downstairs the next morning- she is unshowered, in a robe and pacing. Dad said I could wear pajamas.  I look at Phil, who is gulping down an egg and coffee as their departure time nears. I don't eat in front of Lily on scan days- nor do I talk about food- she usually talks about it enough for both of us. We don't wear pajamas to MRIs unless they are at night. He shrugs- we both know we pick our battles. I tell Lily that she can wear pajamas- but we do not go out in public with pajamas on, which means she would have to come home for lunch. Lily doesn't move fast- but she is upstairs and back in yesterday's clothes and her robe before I can blink. Pick your battles- they are out the door and I get to work on the mountain of laundry. I also have to download all of Phillip's blood sugars- email them to the doc then print them out and go over them with him. The printer is not working- I spend an hour trying to clean the printhead- manage to get a spotty printout and look at the clock- it's time for me to relieve Phil at the hospital. Hopefully Lily is done, we can hi-5 and get on with the day. I love that he is my partner in all this. He works so hard and then tries even harder to reduce my work loads. Half the time I get pissy about things not being done my way, just because there is not a lot more I can complain about where he is concerned. I think he knows that- I hope he does. I still wonder how I lucked out with him and the funny thing is he says it right back to me- so I guess we are really just the perfect match. He sends me text updates- Lily got an IV and did great.

I beat Lily back to the sedation center- knowing if I head to radiology to find Phil- I might miss them. I catch up with the staff and one of whom we haven't seen in awhile- although with the sporadic schedule we keep- we don't always see some of the old regulars. As it turns out- she had a baby since we had seen her last- which is kind of a good feeling- I know I feel bad that I missed 9+ months in her life- but in the same respect- it means our routine has been better and we haven't been there as much. I usually tell the staff that as we leave- I hope we don't see you here for a long time- it's not because we don't like to visit with you.  They regale me with the story of how Lily stated matter of fact that she did not want the dart- she just wanted the IV and that's it. They all know Lily is a tough stick up there- not because she screams or throws a fit- but because her veins are just tough- add the steroid puffy and it's not a good time for anyone. They tell me how much they appreciate her preparedness. I find that to be ironic- and a little funny. But considering we have been doing this every few months for years and had yet another breakthrough- I will accept the progress. I know very well a bad stick could set us back a year- so I'm glad it went well. 

Lily arrives with Phil in tow- hugging him is like cuddling with a popsicle and he tries to steal my warmth- I can't believe you sit there and shiver all the time- it's miserable. The funny thing is I know it's cold down there- but my body temperature rises when I get stressed- so it usually cancels it out. Lily begins her I want to go home chant and begins taking inventory of all the wires and plugs and notices she is sans pants. This does NOT please her.  She alternates between wanting pants, having to pee, trying to sit up( a 104 pound projectile of sorts and the reason those big bars are on hospital beds) and crying about how brave she was that not a single tear escaped- as all those pent up tears run down her chubby cheeks. Phil and I laugh- now she's mad at us for laughing. It's always fun and I'm glad to have Phil there- it's not often we get to handle these things side by side and it's just nice to have him there. Lily starts to get agitated about the wires and holds up the pulse ox- I as always- say Lily Phone home? She hears Lily go home and the chant starts again. She remembers the red light on her index finger- what is this for??? She mumbles. Phil is a little rusty on sedated lily speak- so I translate and answer. Somewhere along the line my brain is forgetting to communicate with my mouth and I realize that I just explained the pulse oximeter helps them keep an eye on her blood glucose level. Phil laughs- wrong kid! I mean it monitors the oxygen in your blood. She doesn't care- she wants to go home- We catch projectile Lily again.

The sedation starts to wear off and I go to get the car- I have the fortune of getting to take Lily to lunch and snuggle with her on the couch while Phil still will put in a full day of work. I am grateful beyond words for him.  He tucks her into her seat, we wave goodbye and head to where else- Panda Express.

 

You are guided by silent love and friendship around you.

I have to say alot of times the love and friendship is silent. I understand that- as I reflect on all of the times I think of my dear friends and send positive wishes- yet am unable to collect the minutes to pick up the phone and call or even send a text.  At these times I am always comforted by the well wishes and thoughts of friends who take the time to share their positive energy with us on these tough days. It helps and is appreciated. Days later we had Lily's endocrine appointment and were lucky enough to bump into her oncologist. We got the all clear! No sign of tumor or metastases at this point. I take a big sigh. I feel like we are always waiting for bad news- at times it is just easier to prepare yourself for the worst. I know the road ahead is not going to be easy- but we will gladly accept an uneventful journey for as long as we can manage it.

Land of the Free, Home of the Brave.

Four years ago, July 4th, I got up really early. It wasn't for an early morning medication dose. It wasn't for an episode of vomiting or to administer formula via g-tube. It was to make a few dozen red, white and blue sprinkled cupcakes. Not only were we celebrating America's independence- we were celebrating Lily's independence from the chemo beast. No more stopping every few hours to mash up mitotane in a special designated mortar and pestle and carefully balance the formula to powder ratio as to not clog the g-tube. No more weekly clinic visits to flush the port and check bloodwork. No more nausea, anorexia, alopecia, emesis, or neutropenia. As Lily helped put tiny flags on each cupcake she vibrated with excitement. Still refusing to wear clothes, she sampled the goods as much as she helped.  It was a day about her. In her 4 year old world- that was all that mattered- she got a party. The promise of that party helped through some icky spots. To honor her Bravery through battle.  To the rest of us it was a new beginning. Like the first colonists- we were picking up the remnants of our lives before cancer and carrying on in a new place. A place that would never be left untouched by cancer- but would always hold the possibility and hope of remaining cancer free.

At the time, I thought it would be a great tradition- to celebrate this big accomplishment each year. Yet as time goes on- sometimes you need just that- to move on. A celebration would be more of a reminder of the tough times. I think the other 3 kids needed to move past the celebration of Lily and be part of a family unit- to not exist on the sidelines of a sibling with cancer. Because in their world- they choose to not see the alopecia and the emesis and we shielded them a lot- but they fixate on the presents and the special way Lily was treated because she was sick. As a parent, you always try to find the balance. You want to somehow create the illusion of fair in these crazy cancer infested waters of crappy genetics. Yet you can't predict when or where the little soldiers might be wounded. You recognize different children have different strengths and as we tell them- we don't love them all the same- we love them all because they are different. The year after chemo, you are picking up pieces of normal and trying to fit them into a new home. The home is a different place than it used to be- so not everything fits. You are being chased by the shadow of cancer- with more frequent checkups than a normal person while reveling in the lighter schedule than you were accustomed to. The next year presented a new battlefield, an unexpected one- the summer of diabetes and again our family force was split as we tried to manage a new medical challenge that presented itself- there were fireworks but not together. The following year- we returned to the cancer battlefield- fortunately not in Lily or any of the kids. A new type of bravery was required on my part. As the old adage goes- you don't know how strong you can be until strong is your only choice. The challenge- being the sick one. I didn't like the role- so we packed our bags and resumed our hectic schedule. We kept on marching through this year- a quiet night at home- no fireworks- just a barbeque- painting some tshirts and doing nothing. And although there was a bit of griping from the peanut gallery- they are easily entertained with water balloons, glow in the dark balloons, ice cream and the promise of fireworks another night.  For Phil and I, the normal nothingness is what we needed. The lack of pyromaniacal danger was necessary. Sometimes you learn the greatest celebration is in doing normal. There are times when the distraction of creating and organizing a celebration is needed for morale and for unity. Other times the down time is what is needed most- laughing over dinner or a silly television show or  just acting silly together. There are times when normal IS the celebration. Those are the moments I find I cherish the most. They are authentic and pure. They may not be fancy, but they are free!

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!

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?