Keeping Calm through Craziness and Cyclones

Everything happens for a reason.  That doesn't mean it's good or fun or that we don't have a say or that we do have a say- but if we can find the purpose, sometimes it makes the roughage a little more palatable.

After week one of chemo-lite- I was feeling pretty good. Running here and there getting the kids ready for school.














spending time with Bella, who I had promised just mommy and Bella-time.

Then the icky hit. I had overdone it. I knew at dinner- twice having to leave the table of leftovers and certain smells were making me nauseous.  When I feel ok, I feel the clock ticking the loudest. My lists are full, the checkmarks are few.  So the days where I feel ok- I take deep breaths and do what I can. Later that night the unrelenting nausea set in. I wasn't expecting it- after all I had only done the "lite" chemos. Maybe it was something I ate. It hits furiously- Phil comes in- not sure how to possibly help- there is no hair left to hold back- I guess that's a perk. I'm tired of finding the bright side.

As I get all four kids off to school, the news hits- not one but 2 hurricanes are on the way. GDMFCSSOB. Phil says they won't leave. He is reassuring himself, not me. He is kidding himself, not me. I am.  I know what this means. It means he will pack up and leave. He and the rest of the available pilots will escort millions of dollars of precious flight power over the ocean to dry land while those left behind prepare and protect our priceless treasures. Ultimately ironic as one of the primary missions of the unit is to protect the island, just not from this kinda threat. I know this drill- it's been many years since I've done it in earnest, yet it doesn't really differ from the living with cancer drill. You wait, you hope, you prepare the best you can- but you just don't know if or when it will hit and how bad it will be until it does.

I go about business when the realization hits. Lily's scans. The hurricane is supposed to hit the night of Lily's scans. OH mother of GDMFCSSOB. The familiar PTSD scanxiety sets in. He still thinks they aren't going. I ask my sister in law to be on call to take the kids to school the morning of scans. I know he will be gone. He packs a bag, because superstition dictates if you are prepared- it won't be as bad. That's bullshit. Sometimes it just doesn't matter how prepared you are- it still is bad. But I plug along with mental checklists- start doing laundry. Get out the huge lemonade jug for water, grab a few supplies from walmart and safeway. There is no water or bread to be found in the stores. People are expecting the worst.  The last two hurricanes that hit hard were Iwa and Iniki. We are due. It doesn't help that the beyatch's name is Iselle.  I secretly hope she is graceful as her name and not a force to be reckoned with like my Belle.

I look through my supplies. Somehow my emergency radio and can opener are missing. I hit amazon and overnight some supplies. I know they won't be found in stores. The thing about hurricanes is you have time to prepare- it's not like a tornado that just pops up or an earthquake that sneaks up and shakes you. Phil comes home with three cases of water and a metal suitcase. The one that fits in the jet. He rallies the kids to help him put all the patio furniture in the garage.  I feel lost. I am grateful that I didn't have abraxane.  We barely speak.  I know he has to go. Part of me finds the bright side. For months he's gone out of his way to cook for me, make my load easier. Part of me worried that he thinks I can no longer do it. Part of me wonders if I can. He wouldn't have left if he thought I couldn't handle it. Not exactly the way I wanted to rally that vote of confidence.

I am at the sink washing dishes when a thought hits me.  If she were still alive, my grandmother would have been calling asking how we were. She'd be praying up a storm and keep the family updated. A calm settles after the tears. What will be, will be. I know my angel of weather will look out for us. Phil shaves my head and I take a cold shower- because in the flurry of events- no one noticed that there is no hot water. He resets the water heater and we cross our fingers, we go to bed.  Phil and I get up at 4am. I see him off and get ready for a long day. I wake Lily and we begin our adventure to scan land. It is just another morning in Hawaii- sunny, breezy. No hint of the impending danger on any front. I hear a wimper from the back seat and my heart breaks. It's going to be ok monkey- I tell her.

Did you grab the movies?  She sobs.  Oh no. 2.5 hours in the tube and she forgot her movies. I'm wondering what exactly is in the 35 pound backpack she is lugging around.  I take a quick detour to walmart. This could be an epic bad decision. epic. News stations had been feeding images of crazy lines outside stores, people waiting for water. The parking lot is nearly empty. I sigh. We jog in- grab the latest Barbie flick and are out of there in a flash.

We are the first car at the valet and the first to check in at MRI.  They allow me to come back with Lily as she gets ready. She hands off the movie and the tech scans the length- Barbie movies aren't particularly long. Ideally titanic or dances with wolves would be better suited for today's scan- but she wants to watch Barbie- it's her hospital visual comfort food. She is prepared that they have to stick her.  She gets settled, her movie goggles on and I make my way to the waiting room. It's hurricane coverage. This is not helping my calm. I have to move. I let them know I'm going to get some tea- they let me know it's going to be awhile.

I stop to visit one of my favorite nurses on the way. We chat for an hour. I decide I better check back. I grab my tea and as I get settled in the waiting room- Lily bursts through the door wearing a ridiculous hair net and strikes a grand pose. She declares that she has gone to the bathroom and wanted to check on me. I sneak her a big bite of purple flower cookie that I grabbed for her. She jumps up and down, then heads back in to finish her MRI.

They call me back. My heart lurches and sputters, settling somewhere in my ears- a pounding drum.  She just wanted to say hi- they were taking a quick stretch break.  She wanted to make sure I was still there. I'm still here. Her leg hurts. Try and stretch it.  They only have 15 minutes left- you can do it Lil.

She finishes up and practically drags me out of there- lest there be a chance they call her back for more. I know that feeling. Overall it was less than 3 hours. That's a good sign. The tech seemed fairly chipper as we left and told me how great she did- I'm hoping that's code for - nothing to see here- just nice pretty boring organs.  We won't find out for days, the official report. I hope with the hurricane- they don't get lost in the chaos.

We stop to get gas and ice on the way home. Drop the ice in the cooler and grab celebratory Panda on the way to get Bella from school.  The post scan migraine I always get is starting to creep up behind my eyes- but I just don't have time for it today.  We detour to the beach by school since we are 5 minutes early. Lily collects shells, I collect thoughts- tally lists in my head. Phil texts that he made it to Vegas.  One more worry to check off the list.

We head home and finish preparations. Phillip calls to tell me wrestling is cancelled because of the storm and can he go work out with his friend? I give him an hour and a half. I lay down for an hour then head downstairs to wait it out. Then I remember we were supposed to go to the Ballet. Well I remember because the girls are asking incessantly. As of yet, it's not cancelled but there is no way. There is just no way. The girls are in tears. Phillip flies through the door at 4:59. A whole minute to spare before Hurricane mom knocked out all his electronics. I shoo the girls to the park- as of now it's still partly cloudy- they need to enjoy the weather while they can.

Phillip is staggering around the kitchen. At first I don't pay attention- he usually comes right home and forages for food- he's 14- its what they do. I have no discernible dinner plan, so I allow it. I realize he is drenched in sweat and pacing. GDMFCSSOB- his blood sugar is dropping and fast.  What's your blood sugar?  He looks right past me. I yell at him to sit the hell down.  He moves towards the chair and mumbles 32. THIRTY TWO?!? Its supposed to be above 70. Usually people lose consciousness around 20-something. He is fumbling with an applesauce packet- that won't do- straight sugar is needed. I grab a juice box- empty it in a cup and dump in two spoons of sugar and hand it to him.   I go to his room and get his glucometer.  It's still dropping he says. I start rifling through the pantry- where is our emergency dr. pepper?  I finally found it. He takes his blood sugar again- its 36. shit.shit.shit.damn. I hand him the pop and he sucks it down.  We are dangerously close to needing the glucagon shot and that means possibly riding out the storm in the hospital. GDMFCSSOB. We wait 10 minutes and he takes his blood sugar again- my sister in law texts to see if he's coming over for dinner. shit- she was going to feed him for me while the girls and I were at the ballet.  He takes his blood sugar again. 56. We are at least on the rise. I hand him another juice box. I text an apology and that we are dealing with a tanked blood sugar.  I think for a second- what if we had left for the ballet? Would he have been able to get through this alone. I decide not to think about it. Everything happens for a reason.  She texts asking if we want pizza- oh dear this woman is a god send. Absolutely.  Pizza.

We sit around watching the news, eating pizza. My adrenaline stores depleted, energy gone. I bleach the bathtubs so I can fill them with water. I plug both the kids bathtubs and run a hot bath for me. The girls' tub is draining and the faucet is leaking. Hmmm. I invert a bowl and put it over the drain- it suctions down. I think I have fixed the problem, so I go to turn my faucet off and it spins to off- yet it is definitely not off. It is the opposite of off. I spin the knob back and forth- it finally grabs and I get it turned off before I have premature natural disaster flooding. The par on this course sucks. I refuse to say it could be worse because according to the news- worse is still barreling towards us.  All I can do is try to relax in the bath and then crawl into bed, expecting to wake up to the roar of wind and the crash of trees.

I wake up to quiet. It's cloudy but the sun is poking through. I turn on the news- still waiting but its not looking too bad. I check the tubs- both drained. Add that to the honey-do list.  I make breakfast and take a walk with the girls before the storm officially blows over us.  We go to the beach to check out the waves. A few surfers are out tempting fate- but it doesn't look too stormy. We go visit with the cousins for awhile and head home for lunch. A big sigh of relief. The world has now heard of the storm and I get a couple texts from afar. I assure everyone we are fine. Although fine seems to have taken on the meaning -perpetual state of crisis with a background of paradise.

I hear the kids grumbling how we did all that work and getting ready for nothing. I explain to them that it's not for nothing- that is exactly WHY we do this. I know it's hard for them to understand. We feel a sigh of relief because we are lucky, the storm did not hit us. But there are many on the Big Island who weren't so lucky. It could have easily been us.  It is amazing to me how scanxiety parallels waiting for a hurricane that's on track for you. It's a lesson in being prepared and faith and control. And sometimes you just have to take it an hour at a time. You don't know what could be around the corner- it might just be sunshine.

Bad Hair Day

Last week the girls had auditions for Little Mermaid Jr at PACK. The practiced their little hearts out and I was really impressed with how well they auditioned- even Bella, who up until a few weeks ago I was convinced was tone deaf. Turns out the deep little tone she likes to hear herself in- isn't her only tone and their voice teacher is nothing short of a genius because she actually can sing for him in this really cute little voice.  Lily and Kiera both got call backs which was a new experience for us- and a positive one. They aren't quite ready for the major roles- even though they are pretty sure they are- but they are paving their way. I'm mostly excited that it's a show I adore- because for the next three months it's all that will be playing as we drive back and forth.

At the first rehearsal, they did a read through. I sat and listened. One little girl just kept staring at me. I get used to it. It's so much easier to deal with kids than the adults.  When the parent next to me left she relocated herself to the chair next to me, continuing to stare.

Hi.

Hi.

Her script lays closed in her lap, she is petting her hair- just like Ariel in the movie, so I ask her-Can you follow along in your script?

Nah, I can't read any of it. She has the most incredible glass green eyes. I don't know maybe they are hazel- but they are clear- like sea glass- I've never seen anything like them, they are amazing.  I smile and open her script and point to the words.  She leans in and whispers I just got a haircut. For the summer. I had A LOT taken off. 

Wow- that's cool I tell her. She smiles. I spend the rehearsal telling her when to turn the page and answering her questions about the show.  When I relay the story to Phil later he looks at me and laughs- so you never told her what happened to your hair?  Nope- she didn't ask.

For the past few months the conversations I have with people centers around my hair. It's kind of silly because even though I took care of my hair- it never dominated every discussion as it does now. I know people are curious and I prefer it to the quiet stares- but sometimes it feels like it's all I am now.

It's so soft. 

It's such a great color.

It's coming back in. So you're done with chemo?

I wish. But we are on to a new routine. A routine that this far has me feeling better for a couple weeks more.  Monday I just had Herceptin and Pertuzumab- both monoclonal antibodies and far easier on the system and I get those every 3 weeks from now until forever. I got a shot to keep my bones from self destructing and another shot of B12- which I highly recommend. That stuff is gold. And not having abraxane is gold. But all that glitters is not gold and for now, every 6 weeks I will still get abraxane- to keep the glitters away. It also will keep the hair away. Which kinda sucks.

As we sat in chemobay- it was a different crowd. We got up early to get done early.  We got the corner chair- because it's not that we aren't social- I just prefer to meditate or sleep while I get drugs pumped into me. Plus almost everyone else here has the same hair as me -so what on earth could we possibly discuss? Phil has a new app that has a million levels just waiting for him to dominate. Sometimes we play a little scrabble. A woman walks in with a toddler in a stroller.  Children are never allowed in the chemobay so I kinda worry about what she has going on that they overlook this rule for her. A very big slovenly child and by child I mean 20 something- who we had previously seen snoring away in the waiting room- shuffles in. He plops down next to his mother in one of the chemo recliners pulls the tv around and turns it on very loud- oblivious to the dozens of eyes following him.  I hadn't realized it was bring your kids to chemobay day. I look over to the toddler who looks at me and I shrug.  He pats his hair and shrugs back. I look over to Phil who witnessed the exchange and we both look back to the toddler. He again rubs his brown tresses, shrugs and looks back to me.

Phil- SO um, I guess he noticed your hair.  It is pretty cool.   Then he rubs my head.  The little one rubs his head in this strange monkey see monkey do game we have going on. I laugh because the only alternative would be to cry and I'm stronger than that. And then I take our chemobay pic.

Yeah- that's kinda how it goes these days- even my nonverbal conversations with toddlers center around my hair or lack of. I like my new hair- my butch cut as my mother called it. It was soft. It kept my nugget skin shielded from the sun and air vents. But it was starting to come out. My head had that burning itching it gets every time after abraxane- the nasty little necessary evil that it is. I was kinda hoping it would just thin a bit. But last night my shoulders and chest were covered in fine layers and I felt more like a family pet. I took a shower to rinse it off and gently patted my scalp. As I pulled the towel away, I was again coated in a shedding of little hairs. I don't want to do this again and again and again. I had so hoped this routine would let me keep my little hair. Just a little to protect from the sun. But no.

It had been a good day physically, but I was exhausted emotionally. I had a friend having surgery. Another who was recovering from surgery, another whose husband was rushed to the ER for a possible heart attack. Friends that I would normally drop everything to be at their side and I couldn't. I'm barely keeping up with all our activities. Not just my hair was falling out- pieces of me were falling apart. And yet this was so stupid compared to the crisis in so many people's lives.

I asked Phil to shave it. It was long enough and thick enough still that it was a process. I kept my eyes tightly closed. I hear Bella come in, her little hand on my back. It feels heavy. All of it. It's not just the hair. Its the reminder. Not being what I want. Things not being easy. It could be worse. It could be worse. It could be worse.

What's wrong with mom? she asks as she pets me.

She is not pleased with her current hair situation.  Phil responds.

The little hand still petting. I thought the water from the shaver was dripping, but its coming from her eyes. Does it hurt?

Yeah- Phil tells her- It hurts.

It's really not just the hair or the bad hair day. It's the learning to live with cancer. This is how it is and it is about making it work. Just like an unruly cowlick. Or curls in humidity. I don't have to worry about that. Sometimes things hurt. On lots of levels. So I let the hairs and the tears go because I hope as each one leaves so will some of the hurt so I can focus on moving forward and not on that. Because it could be worse.

Back to Chemo

So vacation's over. Tomorrow is back to the chemo routine. It's kinda like going back to school- the knot in your stomach. I know it needs to be done. It's just hard. It's tough feeling tired all the time and being leashed to the bathroom. Even though I've learned some tricks of the trade- I still notice things like when I take the girls out to lunch and a table just stares at me. Every. Damn. Time. I look. Up- I meet 6 eyes just staring. I smile the first dozen or so times- no smiles back just hard stares. So I put up the invisible wall and enjoy my girls.

Last week I felt good and in between running the kids to activities- I would stop and get salad, or a hamburger or ice cream- things I've found just don't work on chemo. I even had coffee.  Then the anxiety attacks start. I'm sure it was the coffee. Then I have a minute alone and think, huh- I kinda feel ok- maybe next week I'll take the girls to the pool or to the beach. Slam- reality hits- Monday starts the routine over again. Damn. I will not feel like being near the pool or the beach.

Bella comes and hugs me after dinner. She's been sad. Do you have to do chemo again? Yeah I do. But you are no fun when you are on chemo. Well there goes any illusion that I kind of sort of had been doing OK.  It makes me so irrevocably sad, I disappear upstairs to have a few moments. No one notices- as it isn't unusual for me to have to disappear after a meal. Every night Lily says goodnight- not sleep tight but now she says- feel better. FEEL BETTER.  Then I feel worse because I wonder how hard it would be to pretend to feel better. Because apparently my pretending has been subpar.

And I feel bad because on the scale of paper cut to flu- it's really like a mild gastroenteritis. It's not that bad and it sure as hell could be worse. And I was NOT prepared for the emotional whammy provided when you have your ovaries yanked out. I mean everyone knows theres an emotional component and I know that- but on the scale of I don't like my new haircut to the love of your life just died- I figured it would be closer to my friends went out without me kinda pain. When you deal with the really heavy stuff- you sometimes underestimate the biologic capabilities to knock you on your ass. In the past month I've been reduced to puddles of goo over seemingly ridiculous things. Each time Phil comes to the rescue and makes me feel like I have not just completely lost my mind.  The worst was the one time I thought I was completely alone and was wallowing a bit in said puddle and then I feel these lanky 14 year old arms around me.  And I feel even more abysmal- as there is some unwritten rule about losing it in front of your kids and I have lost it so far that I cannot even pretend to try and pull it together. Yet he holds on and doesn't even let go when I think I may have found that relatively slight string to which I might be able to pull myself out of said gooey puddle.

So tomorrow, Monday I am to show up to the chemo bay with a plan. My oncologist is awesome and lets me choose my own adventure. I know I have been relatively lucky on the side effect front. That being so- it gets old.  I wonder if staying the course is the best way. I wish I was the strong stoic sort who could power through unfazed- but I am fazed. I don't blog a lot because I don't want to seem pessimistic but more often than not I just don't feel like it. I don't feel like sharing this part of the chemo journey with everyone- why should I make everyone miserable just because it's not all pink ribbons and parades. I know this is part of the process. And I feel bad because it could absolutely totally BE worse and I know at some point- possibly sooner it could BE worse if I make the wrong call with treatment.  But as my onc kindly pointed out- sometimes things get better or worse for no good reason at all and it's about quality of life. And even I got into the routine- our new messed up normal and forgot to look ahead. I forgot to plan ahead like there was a destination and spots to see along the way. So we will be decreasing the dose of abraxane- which is the toughest to take. I will probably do that one every other cycle. I will keep up with the Herceptin and Pertuzumab as usual every 3 weeks and hope for the best.  This will give me a little more time to feel better and maybe do some things and maybe get a little bit of fun back.  

Pancreas Boy and Talks of the "Artificial Pancreas"

For the past few days I've seen several articles about the great new "artificial pancreas" system. Some call it bionic.  Being the proud mom of a child with a delinquent pancreas, my interest in technology that makes his life easier is pretty high.

First of all I must remind that there are different types of Diabetes. Only about 5% of all diabetes cases are Type 1- also known as Juvenile Diabetes- the kind that you are born with or develops after autoimmune attack or traumatic pancreas injury. In Type 1 diabetes the mad pancreas just stops making insulin. Without insulin, sugar can't get into cells and hangs out in the blood stream which is just not a good thing. Treating Type 1 Diabetes requires insulin shots and multiple blood sugar tests daily. Most cases of diabetes are Type 2 diabetes, also known as insulin resistance. The body makes insulin- but it doesn't work effectively. This is a result usually of poor diet and lack of exercise. Phil and I refer to Costco as the Type 2 Club- we stand by and watch as multiple hundred pound humans push past children in the queue for snacks. Some nearly run over the kids on the mobility assisted scooters, legs swollen and purple with neuropathy. I am definitely not a picture of health, but it does sting to be surrounded by people who take for granted the ability to change their circumstance through diet and exercise alone. Now, not all cases are the same and not everyone with T2 suffers from it as a result of overeating.  But it is a bit of an epidemic, especially here in the States.

This past spring we took a trip to Disneyland as the girls were performing with PACK. In an effort to be fair we tried to do something fun and meaningful for the other kids. You know in the off chance that getting to go to Disney for spring break was not awesome enough. Phil decided touring the Medtronic facility in Burbank(as opposed to going on the Price is Right- whaaaat?) seemed like a good option. Medtronic is one of the major manufacturers of insulin pumps- small pager size devices that deliver insulin instead of having to do shots. I sometimes vastly underestimate my husband's goofy genius. It was a hugely successful trip because we all got to see how Phillip's latest piece of diabetic machinery was manufactured but there was also a mini "museum" featuring the history of diabetes treatment. From ancient diagnosis- if you were going to the bathroom too much,  you would be told to leave a bowl of urine out- if the ants overtook it- you had diabetes which means "to pass through".  Later the term mellitus was added- meaning honey, or sweet because the reason the ants were drawn to the urine was because of it's sugar content. We saw models of the first insulin pumps which were seriously the size of a ghostbusters back pack. Although I truly appreciate how far this technology has come- there are still some major hurdles to overcome.

While we were there we saw new innovations- using bluetooth and wireless connections throughout the house- so a mom could be alerted if her toddler napping was experiencing a dangerous drop in blood sugar to continuous glucose monitors and pumps that "talked" to each other- essentially closing the loop in what technicians call an "artificial" pancreas. In medtronic's model- there still needs to be human interaction to ok the administration of insulin. If a person is administered too much insulin- resulting low blow sugar could be deadly. The problem with insulin and blood sugar is that it is a continuous loop involving multiple organs and outside factors. For one stress- stress plays a huge role in the use of sugar in the body. Exercise- where as real time exercise alerts the body to use or store sugar- a continuous glucose monitor can only send data regarding blood sugar trends. All these things constantly remind me how amazing the body is as a series of systems that work together. It makes sense that no one small device could handle the demands of the endocrine system feedback loops. Yet when I look at the technology amassed for convenience- I wonder why the hell not. 

Right now, Phillip wears two sites- both are about the size of a half dollar and raised about a quarter of an inch. The cannulas(little plastic tubes) are inserted with a special device(inserter) and have a tape holding them in place. Both are wirelessly connected to a small device that records data. The two devices can talk to each other. Phillip tells it when to give insulin. He also can tell it how many carbs he is eating and it will calculate how much insulin he needs for him- based on his current blood sugar and number of carbs being eaten to keep his blood sugar in range. The sites last for about 3 days- then he has to plug another one in. The insulin is stored in the pump and also has to be changed every few days- as heat and whatnot affect it's potency this is attached to the site through a clear tube. He takes his blood sugar with a glucometer( finger pricks) 4-however many times a day he needs to. Some days are a lot more than others and that was one of our struggles- getting him to take his blood sugar. It doesn't hurt too much, although if you look at his fingertips you will see little dots from the dozens of pricks every couple of days. His new pump sends him alarms to calibrate- he needs manual blood sugar checks to compare to the continuous blood glucose monitor values. Not any system is infallible and the CGM monitors changes in blood sugar values more so than actual Blood glucose- this is good because it alerts him if it senses he is getting too high or too low- in order to shut the thing up- he takes his blood sugar and react appropriately. 

The new promised "artificial pancreas" is something we heard about right after Phillip was diagnosed. At my cousin's wedding, a friend of hers was doing research on the feasibility of implantable artificial pancreases. Pancreai? Although the idea of out of sight out of mind insulin pumping is appealing- functionally it requires surgical procedures and steps that kinda worry me for a mutant child. As much as I would like him to spend less time worrying about blood sugar and monitoring- repeated surgeries concern me. That is already something that is on the table due to mutant status and propensity to grow tumors. On the other hand- tighter sugar control means less food for tumors. As much as this lot in life sucks for him- he is managing remarkably well. He learned that diet and exercise are tools to managing how much insulin he has to take and how he feels. Although he can not control his pancreas function, he can control how much he puts into the system and other factors. Even though I would have preferred for him to learn this lesson another way, I appreciate the growth I see and the thriving despite circumstances. 

an implanted insulin pump

Realistically, I think closing the loop outside the body is a good predecessor to implanting devices. The size of the devices still needs to come down. I look at cell phones and what can be achieved - I know the future holds promise for medical devices. I do believe artificial pancreas in a misnomer. As the mother of a child who is lacking a pancreas- I garner a true appreciation for what that organ does. It also gives the general public a false sense of where the technology is at.  The collection of multiple devices talking to each other is a huge step forward- but pancreas they are not. Insulin system, yes. They have even added the glucagon element which is huge- glucagon is a chemical that signals the liver to release sugar stores when blood sugar falls dangerously low. One of the huge worries in a diabetic lifestyle. Phillip carries a shot around with him in case of an emergency. The new "artificial pancreas" system adds this element to another pump, poised and ready to wirelessly communicate with the other pump and continuous glucose monitoring system. You still end up with a whole lot of inpector gadgetry and wiring before it is good to go. In a stroke of genius, the system includes use of an iPhone. By promoting an apple product, hopefully ensuring a partnership that could symbiotically improve the lives and business of many. Because what it ultimately comes down to in the world of health care is the business side of it. 

I am hopeful that in Phillip's lifetime there will be really good options for him to manage his diabetes. I am grateful to the researchers and teams who are working really hard at improving these lives. When I told Phillip about it and asked him what he thought- in 14 year old fashion he shrugged. He doesn't really want to wear yet another piece of something.  I think in the grand experiences we've had with cancer, sometimes diabetes takes a lesser stance due to it's relied treat-ability. Just like each pancreas is unique- each diabetic has a different take on what is a convenience and what is a hassle. Any way you look at it- options are always good. I can't deny as I hear other parents who have kids with other endocrine disorders using the diabetes model to make their kids' lives better- I have hope. I have hope that these systems will be the forerunners for treating many conditions. So here's to the artificial pancreas and the systems it will lead to. For diabetics and other biological conditions. 

Healing

Being in the hospital is one of the most torturous experiences.  By all recent comparisons, this stay was a 4star excursion. I had my own room and Phil stayed the nights with me. Not the romantic 2 night get away that I have been dreaming of, but we survived it and that's all I ask for these days.

I absolutely do not know how non medically savvy people negotiate hospitals. I feel like at every turn I am telling someone how to do their job in respect to me. It's exhausting- this continual advocacy. Some say it's because we are in the military health care system, but I think that is a side effect of a bigger problem. Jaime sat, visiting with me in my luxurious suite with a perpetual look of horror as I explained this was the nicest room I'd ever been in here at Tripler. She asked when the last time I was in a private hospital was. Never. Not me anyhow. I've visited friends in private hospitals. I can overlook the bells and whistles for quality care. More often than not, quality care these days feels like it merely doesn't kill you.

The preop visits to the surgical center usually horrify me. They are aggravating in that not only are you a bundle of nerves- but you are sitting in a room with other nervous folk waiting, waiting waiting to tic items of a checklist that cumulatively take a grand total of a half an hour, yet the visit drones on for close to 3 hours. You don't meet with any of the people you will be seeing the next day and they always deliver disappointing news like- you cannot eat after such and such time and oh- be sure to stop by the pharmacy to waste another hour of your time to pick up some nasty concoction to drink and prepare the bowels fro surgery. Oh crap I forgot about the bowel prep. More so I filed it away under something one doesn't want to think about.  To add insult to injury you have to start cleaning the pipes at 2pm the day before.  So the last dinner turns into last lunch and each bite chewed is chewed with the dawning realization that it shall be but a memory in a mere hour or so.

Whether Jaime was the good luck charm or slathered over my chart was some cryptic have mercy on this poor woman who contrary to what is IN this chart does NOT enjoy pain- the day progressed fairly painlessly. I even managed to squeeze in an annual well woman exam while Jaime waited for my pharmacy number to be called. Because amidst all of the appointments in the past month leading up to this surgery- it failed everyone's notice that I was overdue for a pap. Either way- it was taken care of.

We arrived home, I drank the lemony flavored make you poo goo and dreaded the next events.  Since I react to all kinds of things- I don't do the weird pre surgical wipes which cover you in a bacteria fighting film and supposedly cut down on post op infections.  I have theories on this and infection control in general- but I will keep them to myself. I generally am relieved to be first case as the assembly line processing of the ORs always makes me wonder. Either way- I shower night and morning before surgery. This whole not having hair thing means less toiletries for the hospital and not having to worry about crazy post op bed head. The sun is still soundly asleep when we begin our trek to the hospital. And less shaving for the OR team- woo hoo.

Despite my several pre op appointments and pre surgical arranging- no one is qualified or has the appropriate supplies to access my port in the OR. After not 1, not 2, but 3 IV tries- I have an IV barely hanging on between my ring and pinky finger knuckles. Obviously it doesn't matter that all blood draws will have to be below that( I guess out of the webbing between fingers) and I have an entire arm that cannot be used due to lymphedema risk- they have fooked away my good arm's worth of veins. It is too early to call the VAD team or wander down to oncology and just have them access my port. I shake my head. Fairly unacceptable. Had I not gone over this with pre surgical people- I would have just gone into oncology and had the damn thing accessed the day before. Instead I now have a greenish brown zombie arm as the multiple vein blows heal.

The only reason I dealt with it is because an IV is needed for versed. Versed is my favorite and the only reason you can get me anywhere near an OR. Within a minute of that injection you are waking up in recovery and everything is a little achy and foggy.  I woke up with 2 IV's. Both of which came out within hours. One as I tried to sit up, I look down and blood is dripping out of my hand and there's enough meds going on that you just look at it like- hmmm that's probably not ideal. That is another pretty green brown zombie bruise now. The other had clotted.  I spent many hours that night as a nurse whacked my hand and arm trying to find a viable vein- consistently ignoring the one I pointed her to and finally after Phil kicked her out of the room and another nurse came in- did they get blood from the vein that I had pointed out. Advocacy is exhausting.  I had decided then and there I was out of there as soon as humanly possible. Saturday afternoon was the earliest they would consider letting me out- so by Saturday morning I was asking to leave.

Any surgery sucks. Abdominal sugary has it's own set of not niceties. Standing up sucks. Walking sucks- as things get moving again- it most definitely sucks. Waking up and feeling like you have to sneeze sucks. As you try to prop yourself up to grab the pillow to hold against your tummy so your intestines don't get blasted across the room. Ah good times.  The first day home alone with the kids- I decided watermelon sounded good. So bella put the watermelon on the counter for me. The leverage needed to slice said watermelon was more than I had- so I asked Kiera to please take care of it. I went upstairs to nap- because on narcotics- leaving kids downstairs with a big knife and a watermelon seems pretty acceptable.  After a short nap- I return to Kiera- several bowls of weirdly sliced and crushed watermelon- a mop, a sticky floor and her brother sitting there eating watermelon while she giggled. Later we find out that she ignored the watermelon and it rolled off the counter and splattered everywhere. SO she put the smooshed watermelon in the colander and rinsed it. That melon is what her brother gnoshed on. Hence the giggling. She was on her 3rd round of mopping but from what I can tell- In true Gallagher fashion- she was just pushing watermelon juice around.

Today has been a week post surgery and I am starting to feel human again. We've had a couple hurdles. I'm on blood thinners(fun nightly Sub Q shots) and antibiotics.  I can lay fairly comfortably, sit fairly comfortably and stand up pretty straightish. I am very tired. After 4 c sections, I knew what to expect and my expectations were a little high. This led to many a melt down while Phil assured me I was doing fine. A 15 minute phone call should not require an hour nap- I blubbered. I am a human paperweight I cried as the fan blew a few of the girls get well cards around the room- and I'm failing at that. I'm very antisocial post surgically. It's probably best. I know that next week will be better and the week after that better and then back to the chemo routine. And that absolutely sucks. Getting better to get knocked back down. And then the sun comes up over the palms and the clouds drift by and I feel good enough to sit outside for a half an hour and enjoy it. And the kids give me hugs, gentle, careful hugs and kiss my stubbly head and that's why we get up and do it all over again. These wounds will heal and hopefully lead to something better.

Friends with Benefits

Over 20 years ago, I was the new girl in school. Middle School. In the middle of my 7th grade year- as if that year isn't a bundle of fun anyhow- we picked up and moved from Ohio to Colorado. It felt like everyone knew each other and again, I was the odd girl out. I don't know if it helped or didn't help that just a couple years prior to that we had moved across town in Toledo- I had already gone through being the new kid. As I learned- moving across the country and moving across town really is all the same difference when you are a kid and have to switch schools.

A few months after I got settled in Colorado, I was sitting in class chatting with my new friends and in walks a new girl. I so remember that feeling- the eyes on you, the whispers and then the one person who reaches out to say hi. For me that person was Addie. The sweetest, friendliest bundle of fun you could ever meet.  So I smiled and introduced myself.  And that is how I met Jaime. With an AI not an IE.

Jaime moved from Pittsburgh and well, when you are in Colorado- Pittsburgh and Toledo are like next door neighbors. She was easy to talk to and school chats led to weekends hanging out, to movies and talking about boys. Jaime's mom terrified me- she was a teacher and had a no nonsense approach to all humans under the age of 18. After a few months, she was my second mom. Her relationship with her dad was like mine and my dad's and he came from an Irish Catholic family- just like me. Her big sister Kellie became my big sister.  In high school, Jaim decided to try out this program called IB- International Baccalaureate- it was good for colleges and had an emphasis on second languages. She already had a leg up as they regularly spoke Spanish at home. Well that meant I was totally going to have to try this IB program. Months later Jaim abandoned me in the IB program for the AP program. Something I may not have been able to forgive, except while in the IB program Jaime dated this kid Phil Mallory. I did not like this Phil Mallory oh no I did not. I thought he was a bit of a jerk and a big shot.  Well Jaime convinced me he wasn't and we spent many after school hour watching baseball or football games featuring Phil Mallory.  It didn't work out between them. But fortunately for me it was an amicable split, because that Phil Mallory became my life line and entertainment for the rest of high school.

Jaime was there through Bob's cancer and her home was one of my refuges. Baking cookies, her mom yelling at us to clean up the mess. Years later, her mom's secret scone recipe was gifted to me- and our family tradition of Scone Sunday was born.  Their home often representing the normal family  life I missed. When dad died the week before graduation, Jaime's family made sure I was included in the celebration since all of our party planning resources had been dedicated to planning funerals.

Jaime and Kellie mentored me in spanish when I decided to spend a summer in Honduras. Which is to say I listened to them speak. Kellie even made me a mix tape to listen to on my journey. Years later, a resident of Las Vegas- Kellie was the only reason as a newly married wife- I was comfortable with all the trips to Vegas. I received more than one tactful conversation from a concerned military wife who mentioned Phil may be spending a lot of time with someone in Vegas. Much relief ensued after much laughter when I explained she was family. We were at CU together and Jaime held my hair back on more than one occasion and was my wingman when Phil showed up with spare AF cadets for weekend visits.

Jaime and Kellie were there to celebrate when I married that Phil Mallory- despite paltry notice and busy schedules. Jaime helped decorate for my first baby shower. Her parents became abuelos for my kids- always sending treats and cards. Kellie housed us an our bird flu episode on our great journey to the Aloha state. Every trip home to Colorado meant a visit with Jaime. It truly was a family reunion when Dr. Jaime married Dr. Right, all of us floating around a lazy river in the hot Arizona sun.   Jaime and Alvaro got more than one panicked call from me- Phillip swallowed a screw- what do I do? Do you think I should Vbac or just C-section, again? Lily has Cancer Jaim- what do we do?   It was Jaim who told me to get off the damn computer, stop researching and go be a mom.  When I traveled to Colorado after my mastectomy- she plied my kids with marshmallows, chocolate, graham crackers and fire- while Alvaro and I discussed the finer aspects of reconstructing.

Jaime has been telling me for years to get my ovaries out. I trust her. I know it needs to be done. There is nothing better than having a good friend who is a doctor looking out for your best interests when you have LFS. You get the benefits of knowledge and friendship. She's been telling me for years when I schedule the surgery- she'll be there.  Months ago I kept getting patient email reminders.  She knows when tough love is needed.  So when I finally scheduled the surgery, I shouldn't have been surprised that the next email I got from her was an itinerary.  I have to say having her here might be the only thing that's getting me through this. Part of me isn't sure that I've been a good enough friend to deserve her or her family- I know they have been through many tough times and I haven't been any support.  But I am grateful. I am so glad that 20 some years ago I took a chance a smile at the new girl because she has made such a huge difference in my life.

Summer Plans

Most summers past consisted of me trying to strategically plan activities for the 4 kids with precise dispersement so that there was balance between downtime, fun and productivity. With kids spanning so many years and interests- and a finite budget- this is tricky. Many years have included various camps and fun and good summer memories.

This year is no different except that for the better part of the summer fun time, I will be recovering from surgery.  Here's the long and the short of it- with not too many crazy details but enough to keep the masses of 3 who read this blog happy- although I'm pretty sure those 3 know the ins and outs- but here it is.

I started chemo 6 months ago. Every three weeks I have Herceptin, pertuzumab and abraxane. With the exception of the week before we went to Disney- I skipped the abraxane so I wouldn't feel horrible.  While on chemo, many women go into menopause. I did not. It would have been the preferred case- since my tumors love estrogen- so we began to talk about what we could do to stop this feeding frenzy fueled by my super ovaries. Years ago we used to joke that Phil could just smile at me and I'd end up pregnant- well all those hormones are no longer needed and working against me. I tried taking an injection that stops the ovaries and their production of estrogen. It worked briefly. We tried another shot. It did not work. I had a biopsy to make sure there was no cancerous issue going on that was causing the bleeding- it was clean.

I got a call from my onc nurse- we miss you, is everything OK?

At chemo # 10, 3 weeks ago- I stopped in and chatted with my oncologist and we decided that I should be strong going into surgery and having chemo the week before probably wasn't ideal. Since my scans in March were awesome sauce- I get a week off. That means 2 whole weeks of feeling ok before surgery on June 5th. Now if I subtract the weeks worth of preop appointments and stress associated with going to Tripler almost every day- well I still get a week of feeling good. Beggers can't be choosers and I truly try to embrace my days.

That week was last week. I had date day with my husband. I made a trip to Target. I cooked 3 times. I went to not 1 but TWO work functions with Phil. I still have only gotten a fraction of the things I wanted to get done accomplished, but I've met with friends, started organizing my closet- cleaned off my desk(anyone whose dropped dinner off knows that was NO small task). What desk? Oh that pile of craziness behind the mountains of laundry actually has a desk under it.  At 10 pm last night, after spending the better part of the day trying to finish the closet mess I started,  Lily comes down with tears and a fistful of bills. I can't find my hearing aids, I think we are gonna need this. 

The hearing aids that are loaners because the last pair was lost? The hearing aids we specifically talked about treating like gold? The hearing aids that took 3 months to get an appointment to get on loaner?  We tear her room apart- I systematically go through her desk which is an episode of hoarders waiting to happen. She knows how bad this is. This also explains her mood for the past few days- I thought it was because I was going in to surgery and she was feeding off my stress. It turns out this is just normal life- kids learning their way and us there to guide them. We just did this a couple months ago- the last time she lost her hearing aids. I hear Phil on the stairs-psst. He holds up the case. He found them. phew. I can't help but feeling this may be just the distracting crisis I needed to put everything into perspective. Lily and I continue on into the wee hours of the night- getting her side of the room squared away. Nothing like a little motivation to accomplish a task. When the adrenaline wanes- I am too exhausted to carry on, we tell her we love her no matter what. We tell her it was irresponsible but not the end of the world.  She's had days that she's worried about this and it concurrently makes me sad and angry. Sad she has to worry and angry that we have so much going on she didn't come to us and tell us. We try to impress upon her an ounce of prevention and care can alleviate a lot of stress and worry. Like tonight. If she had told us when this happened- we could have taken care of it then, instead of her not sleeping and hoping they would turn up. She nods. I hate cancer she whispers as she hugs me. I can tell she won't sleep any better. For the past 4 days she's said this many times. I thought it was about me and I worried. I was worrying for the wrong reasons. I nod to Phil, he shows her the hearing aids. She can sleep now.

But it is part of her reality. Sometimes reality bites. Some times more than others. Cancer is our reality. It has touched us over and over and hangs like a cloud over our little Li Fraumeni Syndrome family.  It's hard not to get bitter and envious of families who never deal with cancer. It's hard not to compare over which cancer is worse or whose road has been tougher until you realize it is just counterproductive. At the end of the day, we are all just humans trying to navigate these shark infested waters of crisis and emotion. Lily was upset because cancer caused her hearing loss. The hearing loss means she has to worry about these expensive little pieces of aid. I tell her stories of how in a small way I understand- with having to wear glasses since I was 8- having them knocked off in gym class- not being able to see when we went swimming. And now- having to throw a prosthetic boob around. And I am sad. I am sad I didn't know about the cancer kids camp that was this week. There are so few opportunities here and I got wrapped up in my own journey- I missed an opportunity for her. I think she would have benefitted. Because despite us plugging along like normal because I want to feel normal- sometimes our experiences need to be validated. I don't mean by wearing a ribbon and a shirt that says I survived- although those are all tools- I think being around others who have had similar journeys is the most important way to accomplish this.  Phillip benefitted so much from diabetes camp the year he was diagnosed. Somewhere in the human connection, you can see we all have journeys and they are all tough in their own way. Sometimes by reaching through the pain and reaching out to others for help not only do we help ourselves but we help others feel validated and in return are helping them. And I am so sad that our reality is so busy that I missed this.

The reality is no one knows for sure if this surgery will help. It's considered risk reduction and has it's own set of side effects and possible complications. I know right now my system is a bit of a mess and hopefully we can knock out the hormone part that is feeding cancer and that might buy some time to lay off chemo for longer bits and have a better quality of life to hopefully be making summer plans for many summers to come.

Living on a Love and a Prayer and Letting Go

I stood in walmart, it was almost Kiera's birthday, she was having friends over in 2 days and I needed to pick up a few things. Grandma had been in hospice and the time was near. My phone rang, it was my aunt. My heart dropped. I answered- Is this THE call?

My aunt laughed- oh no- not yet, she's hanging on. Is it a bad time?

Nah I'm just in walmart.

Maybe I should call back, or you call me back, but I need you to do something for me.

My day gets crazier from here- what can I do? I'm thinking- not much from a zillion miles away.

Could you say goodbye to grandma?

And like that- standing in walmart- life gets slammed back into perspective. I weave my way through men's clothes and head to men's shoes- no one ever hangs out there.  I take a deep breath, Kath holds the phone up to grandma and I say my goodbyes. I ask her to hug Bob and dad for me. I tell her we are all going to be fine. It's Ok.  And I am instantly transported to 20 years ago- sitting in hospice, telling dad the same things. Hug Bob for me. We're going to be fine. It's Ok to go. I look up and 2 guys looking at work boots look sympathetic and head for the other aisle. I have no right or claim to privacy there in the men's shoe department, but there are still good people who offer it.

My aunt and I chat and she promises to send me a card grandma wrote, the last card she wrote. She tells me how grandma wanted a religious card and painstakingly wrote out a message. I could tell this card meant as much to my aunt and grandma as it would to me. She apologized that Kiera's birthday cards would be late. I knew there was no shortage of love and prayers. By Kiera's birthday she had let go and was gone.  But we carry on.

I started collecting pictures from family. I got down a couple of boxes from my closet. I searched for pictures I knew I had, but couldn't find. In the process I found things I didn't remember I had.  I found the programs for my brother's, my dad's and my cousin's funerals. Each stuffed with tiny prayer cards. A drawing my cousin made for me on the way to my graduation. The sadness and pain of those weeks of loss very overwhelming. The timeline was this- the year 1994. My cousin Eric, after over four years of battling brain tumors died on April 18, on his sister's birthday.  There were times I wondered in the grand design- how something like that could happen. How unfair it was to end the pain but begin the loss on her birthday. Then I realized maybe it had to be that way, the only way to go on is to pair the sadness with immense happiness. Shannon's birthday would never ever be the same, but it also may have been the very thing that got us through the unbearable sadness of losing Eric. And each year we are reminded of how much it hurts that he is gone, we remember it is her birthday and for that we are so grateful. I found cards and letters from grandma- signed Love and Prayers.

We traveled from Colorado to Toledo for Eric's funeral. I was a senior in high school. He was just a child.  The last months are a blur. We returned home and one month later, May 18th my dad died. That same week, May 22nd marked the 3rd anniversary of my brother's death. Yet the next day is my dad's birthday. Again a strange pair of bittersweet. May is a time of great sadness for us. A time for a lot of love and prayers.

My Facebook reminds me over and over- 20 year reunion- are you coming? I don't recognize half the faces, I keep in touch with few. A few more now there is a reunion. Sometimes the loneliest place is being surrounded by others. In my mind- it's been 20 years that Eric's been gone. It's been 20 years since dad's been gone. More than that since I've seen Bob. The week after dad died, I went to graduation.  I spent weeks in the beginning of May trying to figure out how to get dad there comfortably- were there handicap spots, would mom and I be able to get him to the wheelchair, would we be able to get him in and out of the car. He was larger than life- even sick- he was a force to be reckoned with. He wouldn't have wanted me to worry about him. He wouldn't have wanted to be pushed around. It wasn't an issue in the end- I floated in a sea of graduates clinging to the emptiness of loss that was my graduation present.

My mom sends pictures- it's all I can do right now honey, it's just too hard.

My aunt sends pictures- I don't know how much I can do, I can't stop crying.

My uncle sends pictures- we're trying to set a date for the funeral, Jen- grandma would understand.

My cousin and her husband scan countless photos and sends them to me.

I spent weeks arranging and rearranging - trying to find the balance. Trying to make sure it was a meaningful representation of her life while representing how much she meant to others, how much she meant to me. Missing her the whole time, one of the last remaining links to my dad- one of the last pieces of him.  As I rearranged, going through chemo again, feeling worn down even further I started having anxiety about making the trip to Ohio. I wanted more than anything to be with my family, to say goodbye to my grandma but the thought of a day on planes then turning around and doing it again after a day or two really started scaring me. The germs- the stress- the energy needed- I didn't have to spare. If dad was here, he would go. But he is not here. He hasn't been for 20 years. Phil talked me down off a ledge of despair. He held me when the weight of not being healthy enough to travel to the east coast descended on me.  Then we picked up and carried on.  He gets angry sometimes because I don't like to show the hard times. I hate being emotional in public and I can rarely go a couple hours these days without being emotional. The toll is on him- because I spackle on the brave face and he has to be there to fill in the cracks as it breaks away. Two hours of being out requires an afternoon of resting. I thought of my Grandma and what she wanted. She never wanted anyone to fuss. She would never want to be the cause of any worry. She would want me to take care of me and the kids. To be able to take care of the kids means to take care of me.

I returned home from chemo and Phil grabbed the mail. He hands me a card, from Helen T. Connolly, my grandma. It's the card. This is the last card I'll ever get from her. It was perfect. It was touching. It did not hold the answers to the universe- but it holds treasure. It is something I will treasure for the rest of my life.  I would never feel Ok about missing her funeral, but this helped me feel better in general. There in the card- signed Love and Prayers.  I call my aunt to tell her thank you, she reads me clippings over the phone that meant so much to grandma. I text my mom, we share memories. I text my cousins, they return with memories. The book takes shape.

Click here to view this photo book larger

I finish the book and ship one to my uncle express, with love and a prayer that it makes it to the funeral. The other finds it's way to me. I sit and go through it with the kids. I miss my family and the happy times in those photos so much.  I feel the overwhelming sadness of not being there to celebrate her life and to remember her as a family, together.  I decide we need one final gesture, for me, for the kids, to say goodbye. Phil suggests Sunday, the 18th. And I can't think of a more fitting time. On the 20th anniversary of my dad's death, the night before my grandma's funeral- we remembered them and celebrated their lives. Pairing the happy and the sad. We sat around the dinner table and made toasts in their honor. We shared memories of grandma- which included using her magnifying glasses to set fire to several things and how if she liked you a bunch she would give you a big hug and you could hear her hearing aids whistle and how she was always, always sending love and prayers. So it was an appropriate tribute to let our inner pyromaniacs fly in her honor. Then we went to the beach and with some of the lanterns left over from Bella's Tangled birthday- we sent love and prayers into the sky.

Forever in my memory- will be a smile from Phil as he grilled dinner- do you smell that?  Not the meat- the sewage plant. Yes- well I'm hungry now- sewage plant smell. It means the winds died down. Its a good night for lanterns. The clinking of glasses as we shared memories.  Lily dancing around us as the wind started up and we were pelted with rain briefly. Lily is not calm she yelled- Lily is not calm. Each child taking turns holding the lantern when the wind died down and watching the first attempt crash and fizzle in the ocean, before it ever caught flight. The reflection off the water worth the untimely demise. Our friends there to hold hands and lanterns and take pictures- helping us let go. Not letting people go or memories go- but letting a piece of the grief GO.

And we start again with another lantern, another memory, another loss. Just like that, the winds died again. The lantern filled with a warm yellow light, drifting up to the stars. Taking with it a piece of grief,  a symbol of carrying on. And the children running down the beach after it yelling goodbye and I love you grandma and me hoping that in that moment our love and prayers were received.  Pairing the happy and the sad.

Therapy

Lily woke up Tuesday feeling yucky.  But to be honest she feels yucky a lot. It makes me feel worse knowing she feels yucky when I feel yucky. I felt pretty gross last week, but was starting to get over the hump. Tuesdays I normally have physical therapy, which has actually made a pretty big difference in a lot of things. I remember my mom being pretty stunned that I wasn't automatically referred to PT after my surgery. When you go to a military hospital, you see missing limbs, you see burns, you see lots of tough situations. Due to the budget- many services are at a premium and dependents get bumped down on the priority list. But when you see someone who has lost part of themselves in defense of this country- you tend to keep to yourself about the little ache in your arm where you have a little divot- after all you still have your arm. 

PT was referred after my genetic counselor went to a conference and this clinic was there offering massage. There are many conditions that massage help and I have many friends who use it regularly. For insurance purposes it is called manual manipulation and definitely does not have the bells and whistles of a spa visit- but I have long since fallen out of love with a lot of bells and whistles in favor of good old fashioned function and peace. Not only does massage help aches and pains, it help loosen up scar tissue and drain lymph fluid. The whole process decreases stress emotionally and physically- which is excellent for healing. 

As a bonus- the Clinic also offers acupuncture with visits. I have been traveling an hour across the island and paying out of pocket.  A true test of whether or not you need something and if it's working- is willingness to pay for it yourself. Having PT and acupuncture closer meant nothing but good things for me. When my PT visits ran out- we had to see if insurance would renew. I told them flat out- regardless I would keep my appointments because it was helping. There aren't a lot of straight answers with cancer and cancer treatment. One of my big beliefs is to do what works. The routine we put in place is working- I don't want to mess with it. I actually get a little panicked when I have to switch my appointments. Sure I can do many of the stretches at home, and Phil is a pretty good stand in masseuse- but acupuncture is something I'm gonna let the professionals do. 

So the squirt complaining of aches Tuesday, I worried that she was sick but many times she is fine. I sent her off to school with a slightly runny nose. As I was getting ready for Physical therapy- I get the call from school- Lily is full blown congested and can't possibly carry on with her day. I sigh and get ready to reschedule therapy. For Phil, who is sitting at the table doing bills- it's yet another night week at work- which just makes for long days and nights in our house. He smiles, senses the tension and offers to go get monkey. And he wants me to go to physical therapy- he sees how much I look forward to it and how much it helps. I am so lucky to have him. I have so many friends whose husbands would scoot of to work and not look back- but that is the benefit of cancer I guess- you get a better perspective on what's important. 

I get back from PT and Lily looks pretty punky. I feel bad- I want to snuggle with her- but kinda terrified of the petri dish aspect of her composition right now.  We settle for sitting side by side, Catching up on a season's worth of Once Upon a Time episodes. I remember a sickness a couple years ago where Lily and I started watching Once. And here we were again, a kind of tradition. Tuesday became wednesday- she was even stuffier.  I offered Starbucks to test the health waters- she couldn't taste anything- didn't feel like eating.  Her teacher called to check in. Maybe tomorrow. Wednesday became Thursday- I offered Aloha salads- something healthy but a bit of a trip. By the time we got there she was asking to just go home.  She don't have enough energy for voice lessons. Maybe tomorrow- there's a celebration at school. Thursday became Friday. Today we sat and looked through pictures. While collecting photos for my grandma's funeral book- I realized what a sad state of organization my photos were in.  I also ran across some gems. Lily and I seemed to be an appropriate pair energetically- for looking through pictures.  Her teacher calls, worried. I've spent more time than I care to recount- making sure everyone at school understands the seriousness of her condition and I've always promised that if she is sick- I'll keep her home. The Petri Dish that is Bella has the same cold and is perfectly fine at school- with the rest of the pertri dishes. She didn't even ask to stay home and would rather play. Phil complained of symptoms briefly- but like always- just is not a complainer- I knew he felt bad when he climbed into bed at 9:30. 

This week reminds me of years past- when I, the healthy child would get overwhelmed with school and life and the pressures of having ones you love dying from cancer. Mom would say- today seems like a good day to take a mental health day. We would go to Estes Park, or just lunch, or just be. Sometimes when you feel loss- the worst place in the world is to be surrounded by people who don't understand. Lily could probably go to school and I would worry and carry around my phone, waiting for the call. Or we could take it easy and let our bodies heal. Sometimes the best therapy is avoiding therapy at all- taking care of things before they get bad- before they hurt. It reminds me of the normallness of colds and viruses- wasn't I just complaining I needed a little more normal in my life? Hopefully it won't become a habit and hopefully I am giving her what she needs. Because even though I hate her being sick and even though I feel like I should be doing more, sometimes just hanging with Lily is the perfect therapy. 

My Mom

I don't remember the last Mother's Day I spent with my mom. It's been way too many years. Somewhere in the world of being a mom, being a daughter became second fiddle.  There are so many times I wish I could do more for my mom.  She is the first to tell me, I gotta take care of the kids and myself first. Because as a mom, that's what you do, you make sure your kids are ok first.

Mother-daughter relationships are complex and ours is no different. It has morphed over the years from complacent to volatile to quiet understanding. It's always backed by love. My mom, being my mom was the best model for mothering.  I am the person, the woman, the mother I am because of her. She is human. She makes mistakes. She loves. She hurts. She creates. She picks up pieces and moves on, over and over and over. She is a survivor. She is absolutely crazy. But each passing year, I understand her crazy so much more. I am to her crazy as my kids are to mine, it's all part of the crazy mothering package.

Being a mom Is swooping in and saving the day when squirt thinks they can handle it but is drowning. It is also letting them flounder the precise amount required for them to gain an appreciation for their limitations. Being a mom is seeing your charms and your flaws flaunted in front of you daily, sometimes hourly. Being a mom is the most helpless and the most empowering position ever.  Being a mom means your heart, soul and entire being are wandering around outside of your body.  Most days they are doing it wrong which makes you feel like you are mothering wrong. Yet every now and again, there are the glimpses of the amazing beings they are, the good they can accomplish shines through and in those moments you know you did something very right. In those moments I realize how many things my mom did right and I am thankful.

In times when film was expensive and memories were sharp, she 'd tell me to take pictures in my head. And we would stop and have a moment and take our pictures in our minds. But also in those moments were sharing something just for  us. Just being. Appreciating. We had nothing to take back and share but our memories.  The pictures in my mind sit there waiting for their stories to be told. They are there because of my mom.

Over the years things have been broken and lost. Mom would say they are just things, things can be replaced, you can not be. She taught me through this the true value of right, wrong, friendship and love. I was not careless with objects because they could be replaced, I placed them on a scale of worthiness. I remember pictures with burnt edges, stories of wedding gifts lost in a fire in my parents first year together, the items salvaged just what did not burn. The experience of loss framing her mindset and lessons passed to me.

There were years of stress and self inflicted pressure to be the best. Many tearful nights of sitting at the kitchen table with mom making lists. To this day she asks me - did you make a list? When Lily got sick, we went over the list of pros and cons of chemo. When I got sick we revisited them. As she gets older, I see these lists all around her. Lists for memory instead of necessity. I have books of lists,shopping lists,mental lists of dreams. But the lists that matter are the lists we keep and most of those she made with me.

My mom taught me to trust my gut. To be patient and hurry up. She taught me there is always more to people than what you see. You have to be just be who you are and sometime just BE. I can read because of her patience and I write because of her encouragement. She still calls when she just has a feeling, and usually that feeling is right. The feeling is that your child needs you and I've learned to trust that feeling too. Contrary to years of protest, my mother was right about so many things. Hardly a day goes by that I don't hear her leaping from my mouth.

Over the years I've learned lessons she tried to teach me when I was young. When I was too busy to stop and truly listen, too busy having fun. But I am grateful now for the lessons and the experiences learning them taught. Because now I know when my kids don't listen, it isn't all for naught. I turned out ok and they will too, because I know I love them as much as she loves me. I will pass along all of the lessons and someday they will see.

So on this Mother's Day, even though I cannot be with my mom I know I am where I need to be and she understands. I hope she knows that on this Mother's Day I understand a little bit more and appreciate her a whole lot. I love you mom!