Posts
Messages for the Mallorys
17 years ago
Tuesday, July 9, 2013
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!
Wednesday, June 26, 2013
Adrenaline Rush
The adrenal glands are pretty amazing organs. These lumpy glands perched on top of each kidney like a floppy little stocking cap are responsible for producing hormones that control the body's use of carbohydrates, fats, and proteins, that suppress inflammatory responses, maintain blood volume, blood pressure, balances of salt and potassium and all the processes associated with epinephine(adrenaline). Fortunately these steroids and hormones have been manufactured by humans and are a decent substitute when adrenal function goes awry.
4 years ago this week, we reached the end of Lily's chemo routine. The in-patient admissions found us facing many of the ups and downs of these alternately life saving and life threatening treatments. During chemo- patients are routinely given megadoses of steroids to try and counteract some of the dreadfully stressful physical responses to the toxic chemicals being administered. We knew going in that she was going to lose her adrenal function- that was the exact purpose. As in many chemo regimens- the hope is to kill off the bad cells before the good ones quit. Concurrently and then after the in patient program- we gave Lily mitotane- a chalky bitter white pill that promised both to kill her cancer and her adrenal gland. Within months it succeeded- although it was difficult to tell which symptoms were from the new adrenal insufficiency and which were from chemo. So in addition to giving her that- we then started her on corticosteroids.
When the chemo stopped, we found our routine. Her platinum blonde spikey streaks coiled back into the brown ringlets we loved. Her cheeks filled out again, her belly rounded. She gained energy and some new emotional ups and downs we worked through- always wondering- is the dose right? Blood tests give you a ballpark- but I learned from a support group online- all of our kiddos experienced many similar emotional ups and downs that correllated with their need or overage of corticosteroid substitution. Experienced doctors looked at us puzzled- that wasn't in the literature. As much as I respect a good scientific read- it neither lives, breathes or screams how much it hates you and that you are the worst mommy ever while stomping upstairs and continue with a gutteral moan for hours. You'd expect this from a 2 year old- but not a 6 year old. At least not a 6 year old in my house- this type of outburst is not tolerated. Life can deal you some sucky hands and no 3 year old should have to face what burdens were placed on her little body- but tantrums are neither productive or healthy in this crazy healing process. Her doses of Hydrocortisone have gone up and down and back up- based mostly on her weight with consideration of how her bloodwork panels look. During sickness- she has no adrenals to signal a need for balance fluid levels- conserve energy or regulate blood pressure- she can go from sick to crisis in a matter of hours. We've seen a couple. Fevers and flu land us in the hospital to be on the safe side. We've come too far to go down like that. She also take fludrocortisone- it is responsible for the mineral hormone functions. It is this tiny little pill that she takes half of- sometimes in summer we up it to a whole pill to account for the stress on the body induced by heat and sweating.
Every 3 months or so we do bloodwork. Usually it looks good. A few months back there was a blip. A normal appointment became a team conference with Oncology to gameplan an approach to this issue that could be endocrine or oncologic. Neither option was rosy- if it was endocrine- it meant that Lily was starting puberty at the ripe old age of 8. The household 12 year old is not yet equipped for this change- the thought of going over these issues with a younger kid is a little daunting until you consider the life threatening and dismal option that cancer may be back. Boobs and a period seem like good trade overall- regardless of age. Scans were had, more tests, more bloodwork, 24 hour urine collection and then another to compare- good times had by all. None of the results pointed at oncology- sigh of relief- although given our propensity to sprout malignancies and our astute, thorough team- that is not good enough. We considered the possibility that her left adrenal gland was trying to work- against all odds- against bombardment by toxic chemicals and then 4 years of supressive replacement therapy. The organs are pretty smart- they have lots of checks and balances to make sure they aren't doing extra work. If you plug in a bunch of hydrocortisone- the adrenals might just go on vacation. You then run the risk that they will like the vacation and grow too lazy to go back to working. For someone like Lily- the replacement steroids are because we were pretty certain her adrenals were not going to work again, ever. After a conference- our endo asks a few specialists what their thoughts are. She hears that it isn't unheard of for adrenals to come back- the body is amazing. You just never know. And we never do.
SO the call came last night- our endo would like to cease the fludrocortisone immediately- we need to do a corticosteroid stimulation test to see if her adrenals are really up to the challenge. It will involve bloodwork, injecting ACTH- which stimulates the adrenal to produce cortisol. After an hour, her blood will be drawn again to see if it's trying. It's a wonderful and scary proposition all at once. It's a rare gift I never really considered- it wasn't really on the table. I'm not sure how to approach it. I am excited at the possibility of a more normal day to day routine- I don't think we'd be out of the proverbial woods with illnesses. I am elated that she might not have to be dependent on these exogenous man made chemicals- with her already taxed and mutation prone system. I am hesitant to get my hopes up and then have them shattered. I worry that she's headed towards early puberty which means a lot of extra hormones that could potentially bring more cancers. But then I remember this gift is just that- an opportunity for more. It is an opportunity I didn't think we'd ever see as I laid by a sick little monkey just cherishing every moment we had. Each day is a gift and each challenge is an opportunity for something we didn't consider but could be amazing. I've never been much of an adrenaline junkie- but it looks like we can't rule out Lily monkey's chance at being one quite yet!
4 years ago this week, we reached the end of Lily's chemo routine. The in-patient admissions found us facing many of the ups and downs of these alternately life saving and life threatening treatments. During chemo- patients are routinely given megadoses of steroids to try and counteract some of the dreadfully stressful physical responses to the toxic chemicals being administered. We knew going in that she was going to lose her adrenal function- that was the exact purpose. As in many chemo regimens- the hope is to kill off the bad cells before the good ones quit. Concurrently and then after the in patient program- we gave Lily mitotane- a chalky bitter white pill that promised both to kill her cancer and her adrenal gland. Within months it succeeded- although it was difficult to tell which symptoms were from the new adrenal insufficiency and which were from chemo. So in addition to giving her that- we then started her on corticosteroids.
When the chemo stopped, we found our routine. Her platinum blonde spikey streaks coiled back into the brown ringlets we loved. Her cheeks filled out again, her belly rounded. She gained energy and some new emotional ups and downs we worked through- always wondering- is the dose right? Blood tests give you a ballpark- but I learned from a support group online- all of our kiddos experienced many similar emotional ups and downs that correllated with their need or overage of corticosteroid substitution. Experienced doctors looked at us puzzled- that wasn't in the literature. As much as I respect a good scientific read- it neither lives, breathes or screams how much it hates you and that you are the worst mommy ever while stomping upstairs and continue with a gutteral moan for hours. You'd expect this from a 2 year old- but not a 6 year old. At least not a 6 year old in my house- this type of outburst is not tolerated. Life can deal you some sucky hands and no 3 year old should have to face what burdens were placed on her little body- but tantrums are neither productive or healthy in this crazy healing process. Her doses of Hydrocortisone have gone up and down and back up- based mostly on her weight with consideration of how her bloodwork panels look. During sickness- she has no adrenals to signal a need for balance fluid levels- conserve energy or regulate blood pressure- she can go from sick to crisis in a matter of hours. We've seen a couple. Fevers and flu land us in the hospital to be on the safe side. We've come too far to go down like that. She also take fludrocortisone- it is responsible for the mineral hormone functions. It is this tiny little pill that she takes half of- sometimes in summer we up it to a whole pill to account for the stress on the body induced by heat and sweating.
Every 3 months or so we do bloodwork. Usually it looks good. A few months back there was a blip. A normal appointment became a team conference with Oncology to gameplan an approach to this issue that could be endocrine or oncologic. Neither option was rosy- if it was endocrine- it meant that Lily was starting puberty at the ripe old age of 8. The household 12 year old is not yet equipped for this change- the thought of going over these issues with a younger kid is a little daunting until you consider the life threatening and dismal option that cancer may be back. Boobs and a period seem like good trade overall- regardless of age. Scans were had, more tests, more bloodwork, 24 hour urine collection and then another to compare- good times had by all. None of the results pointed at oncology- sigh of relief- although given our propensity to sprout malignancies and our astute, thorough team- that is not good enough. We considered the possibility that her left adrenal gland was trying to work- against all odds- against bombardment by toxic chemicals and then 4 years of supressive replacement therapy. The organs are pretty smart- they have lots of checks and balances to make sure they aren't doing extra work. If you plug in a bunch of hydrocortisone- the adrenals might just go on vacation. You then run the risk that they will like the vacation and grow too lazy to go back to working. For someone like Lily- the replacement steroids are because we were pretty certain her adrenals were not going to work again, ever. After a conference- our endo asks a few specialists what their thoughts are. She hears that it isn't unheard of for adrenals to come back- the body is amazing. You just never know. And we never do.
SO the call came last night- our endo would like to cease the fludrocortisone immediately- we need to do a corticosteroid stimulation test to see if her adrenals are really up to the challenge. It will involve bloodwork, injecting ACTH- which stimulates the adrenal to produce cortisol. After an hour, her blood will be drawn again to see if it's trying. It's a wonderful and scary proposition all at once. It's a rare gift I never really considered- it wasn't really on the table. I'm not sure how to approach it. I am excited at the possibility of a more normal day to day routine- I don't think we'd be out of the proverbial woods with illnesses. I am elated that she might not have to be dependent on these exogenous man made chemicals- with her already taxed and mutation prone system. I am hesitant to get my hopes up and then have them shattered. I worry that she's headed towards early puberty which means a lot of extra hormones that could potentially bring more cancers. But then I remember this gift is just that- an opportunity for more. It is an opportunity I didn't think we'd ever see as I laid by a sick little monkey just cherishing every moment we had. Each day is a gift and each challenge is an opportunity for something we didn't consider but could be amazing. I've never been much of an adrenaline junkie- but it looks like we can't rule out Lily monkey's chance at being one quite yet!
Friday, June 21, 2013
Life in the Triage Lane: A Lymphomaniac Tale
Last week, the beloved husband was gone. When he's gone- I make feeble attempts at being fun parent instead of boring, rule making, chore staking mom. I try to spend time with the kids in a fun way, for my own sanity. I let the dishes pile up, I get a little behind on laundry and we do something fun. On top of that- we always try to do something crafty, educational or helpful. Our fun event was driving to the other side of the island to go bodyboarding at Bellows. We live by lots of beaches. Beaches and waves- like other geographical locations- have their own personalities. We have a great beginner surf spot right down the road, the North Shore is known for it's epic breaks, while Bellows is known for it's breathtaking views and bodyboarding.
I load the kids in the car, with the associated bags, toys, boards, coolers, towels- for beach and post beach showering- as we were taking dinner to a friend after our fun- that was our helpful event. Their life is complete chaos right now, as not only do they have a 2 year old with a metabolic disorder who needs round the clock nursing care- they are living in the front room. The back rooms are off limits while construction is going on to make room for an accessible shower and bathroom- to make bathing their not so little munchkin a little easier to manage. Her husband- was with mine- off simulating something or other- someplace other than here. I always enjoy our visits, even though they are few and far between with our schedules. I feel we are kindred spirits- yet it also offers me a healthy appreciation for how less complicated my life is comparatively. It is important to me, for the kids to understand that. No matter how hard life is- there is always someone who is struggling more. Plus partly it is selfish- it feels good to help. I hope to, in any small way I can impart that on my children.
Somewhere during the downpour through the lush H3 , hoping the rain was stuck to this side of the tunnel- I noticed my right index finger was swollen. It is not unusual for the fingers on my right hand to swell, although it's usually the middle and ring fingers that hang on to the puffiness. We went through "training" about lymphedema after my surgery- any time you have lymphnodes removed or damaged- there can be swelling. The lymph system is like a freeway of vessels and little oval balloons that can capture and flush bad particles- germs, bacteria, cancer cells. It is one of those underappreciated systems- it gets no props until it's gone. We have over 500 lymph nodes throughout our body- so when they removed 6 from my armpit- I pretty much thought the lymphedema panic education sessions were overkill. Phil and I laughed hysterically as the lymph nurse wrapped my arm in no less than 4 layers of varying thickness and compression- overkill. I pay attention to swelling and spend a lot of time elevating and massaging the fluid back to another route where maybe another highway might pick it up and send it away- I rarely use my compression glove. I avoid injury- but let's face it- I'm a busy right handed klutz- I've burned, banged and had monkeys hang from my arm. Heck I have a huge scar for the dang lymph to navigate around- I assume that's usually the problem and Phil and I have perfected a massage route to get the swelling back around it. So on our drive- I start trying to massage the fluid out of my finger and notice that the knuckle hurts. I don't see anything and the swelling causes the joints to ache anyway- plus the rain- I continue massaging without much benefit.
We get to the beach and although it's not raining, I can see some threatening clouds way off on the horizon. Now- I generally laugh when people run off the beach when it rains- if you are there to swim- it's just a bonus water feature. But- it can kick up some waves and I am flying solo with the kids- I don't want to have to go all Baywatch today. I strap Bella in a life jacket and the 5 of us jump out into the waves. They are pretty good size and Bella seems to take off on the bodyboard like nothing. Phillip is fabulous and helps her make her way back out to catch more and they race in. Kiera catches a few and hands the board over to Lily in exchange for goggles- she's checking out the sealife. I prefer not to know- I respect it's their home. Lily is a fairly fearful ocean-goer. I get that- but at any given point- I have a huge monkey clinging to me while being lambasted with chest high waves or trying to give her a shove so she might catch a wave. The ocean senses our lack of comfort with her and they are not easy to come by. I finally just follow which waves Phillip throws Bella into and we have much more success. She catches 2 and we are on our way back out when I see a huge one- we spent a lot of time learning which waves were big enough to jump over and which ones you you just have to duck under and get past. You can try to jump- but then you are forced to go with it. It occurs to me how much this fun activity is like our life. The waves, ebb and flow- triaging which waves can be handled and when you just have to duck and cover. Sometimes you just have to jump into the wave and go where it takes you- sometimes you know it's not the right one and you wait for the next. This is the one for Lily. I flip her around as we feel the big pull- I give her a shove and she takes off ,I can just see her start to flip when the next wave rolls me. I end up somewhere near her and hear her sputtering while I figure I won't have to use a neti pot for awhile- I just had a full sinus rinse. I start laughing and see all 4 of my kids in various states of drowned rat. Phillip yells something that I'm pretty sure contained a word he's not allowed to use- but Lily is starting to freak out. I know we have to go do another wave or she'll let the fear of the tumble fester- gotta get back up on that proverbial seahorse. We catch 2 and everyone could use a break- we head to shore for snacks. As I look out- there is an ominous sheet of raining moving in from the ocean. We decide to try and beat the storm and load the car up and hit the showers. While we are finishing up- the rain hits and throngs of beachgoers are headed our way.
We have a nice dinner with my friend and despite all the times I wonder if I am getting through to my kids- they all spend time helping- walking the dog- reading the baby a story- Phillip even offered to mow the lawn. We finally head home and on the drive back- my hand is aching and now 3 fingers are swollen. It doesn't surprise me- I'll deal with it when we get home.
Friday is a busy day- all of those things I let slide, laundry, dishes, need to be done- Phil will be getting home that evening. I don't have time to elevate or stop for the swelling in my fingers- so I retrieve the smallest of the 4 layers of the wrapping technique and wrap it up. I go about cleaning and laundering and the day passes. When I unwrap my hand- I have a nice ace bandage checkered pattern down my finger- it seems a little red- but it was wrapped pretty good. Mostly I'm excited Phil is going to be home.
Saturday we wake up and my finger is more sore. It feels like a splinter or something is in there and it's still red and puffy. Phil asks if I was stung by a jellyfish. I don't think so- plus it was sore before the beach. Maybe a piece of coral? As he learned surfing- even a tiny piece of coral can lead to lots of pain and swelling. I decide maybe this is a possibility and grab a lancet and try to surgically assess the issue. There is a bunch of clear fluid- but nothing- not relief. I clean it and slather antibiotic on and wrap it back up. By evening it aches and I notice there are more red spots on my finger and few small pink patches on my arm. We are upgrading to rash watch. My arm starts to ache. I don't like the patches and I don't like the creepy way it seems to be moving up my arm. Mostly I'm worried it's gonna creep it's way to the land of lack of lymphnodes and that doesn't seem good. I did like instructed- elevated- wrapped- although not in michelin man style- I was taking precautions since once lymphedema starts- it generally can't be reversed. Phil and I decide if there is no improvement on Sunday- I will go in to the dreaded doctor. Seeing as Sunday was Father's Day- I was pretty much not going to go in. But I felt pretty crappy. My stomach didn't feel right and I had a slight headache. I decided if Monday there was no improvement- I would go in. See a pattern? That's generally what happens.
On Monday, I started the routine of transporting the kids to their various activities and got home for a few minutes rest before heading back out. I stopped in to see my neighbor, who looks at my arm- shakes her head and demands that I call the doctor now. Ok, I say and go home. I wanted to get a quick workout in , but decide to call and make an appointment. The earliest they could see me was wednesday- maybe it would be gone by then. My neighbor knocks on the door and is greatly displeased that I am not seen urgently- I refuse to go to the ER. She says she is picking up the kids- I need to go get it looked at. She's decided I have thrombosis. I know it's not a rash because it hurts and there has not been any itching. I head to the acute care clinic.
By the time I get there and show the triage nurse my creepy rash- It has worked it's way up to darn near the lymph lacking section. Crap. On my intake I put that I had lymphnodes removed and was worried about lymphedema. I was pretty sure that would get me a fast track through triage. She looks at my arm and makes that puzzled face- did you have a mastectomy? She asks. Yes, last year. And they took Lymph nodes? Yeah- only 6 though. And now I have a healthier appreciation for the lyphomaniac highway. A normal little something or other has now become an arm long problem. You are awfully young to have breast cancer? Yeah, we have a family cancer syndrome. Oh, like that Angelina? Sort of- except she only has to worry about breasts and ovaries- we have to worry about brain, breast, every organ, muscles and all bones. Wow, my first husband died of a brain tumor when he was 36. It was very hard. I nod, my brother and dad both died from brain tumors, it's a horrible way to go. We commiserate. She finished all the relevant questions and tells me to hang tight- she'll get me right back. I don't know if it's because I'm a bonafide triage or if I unwittingly punched the cancer card. I watch the tv in the waiting room from my seat. It is explaining how triage works.
Triage was a concept initiated during the Napoleonic wars- when tough decisions had to be made regarding life, limb, and resources- it means to sort or select. The French term became an American one during WWI. There were not enough resources for all the people that could be saved- much less for the ones who weren't going to make it. Nowadays, emergency rooms and mass casualty situations use triage. The acute care clinic- although not an emergency facility- adopts the system. It makes sense and makes sure the most severe cases are seen first. An hour could make a difference between life and death for a potential heart attack but not so much for an ear infection. I sat thinking about it and thought how I felt like I was living in a state of Triage. Most people call it prioritizing- but with the medical elements of our day to day functioning- I am going to call it Triage from here on out. I feel like there is only time for the shark closest to the boat- that I am treading water- waiting for the next shark. I think this is a common problem when you have a chronic condition, disease or family cancer syndrome. You are constantly trying to decide what issue is life or limb and what can be neglected. Kids schoolwork gets triaged for medical care. Mom's mental health care gets triaged to the waiting room because the physical care is more urgent. I didn't have much more time to ponder my life in Triage, because I was in fact on the fast track.
The doc came right in- took a look, made a puzzled face, commented on my low grade not-quite fever(hadn't noticed that) and decides a hearty antibiotic course is called for. I feel deflated. Of course I didn't want to hear my arm needed to be amputated- but I feel like the course of antibiotics is the easy box to check. Yet- it occurs to me- I rush to wonder what oncologic problem might be presenting before ruling out a bacterial one. I should know within a day whether or not it's bacterial. Especially since the orders are for a shot in addition to a 10 day course. I guess it was pretty serious after all. I googled cellulitis. Huh, what do you know? That's what it looked and acted like. A little bit of bacteria where there is a lack of lymph nodes is like taking down one lane of a major highway- things still work- but there is a big jam. Unfortunately- my treating the lymphedema- probably exacerbated the situations effectively limiting the lymph into my hand to carry away the bad bacteria- and pushing bad bacteria down my arm. I'm pretty sure this shiz was not covered in the how to wrap your arm like a michelin man sessions. This is probably considered advanced lymphucation. I know this would fall under the category of- do not injure the lymph node challenged hand or arm- advice that was given. It makes me wonder how so many women function without any lymph nodes due to cancer or radiation treatment. But as with anything in life- we learn from experiences- and this yet one of hopefully many journeys down the lymphtastic freeway. Have you thanked your lymphatic system lately?
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.
Friday is a busy day- all of those things I let slide, laundry, dishes, need to be done- Phil will be getting home that evening. I don't have time to elevate or stop for the swelling in my fingers- so I retrieve the smallest of the 4 layers of the wrapping technique and wrap it up. I go about cleaning and laundering and the day passes. When I unwrap my hand- I have a nice ace bandage checkered pattern down my finger- it seems a little red- but it was wrapped pretty good. Mostly I'm excited Phil is going to be home.
Saturday we wake up and my finger is more sore. It feels like a splinter or something is in there and it's still red and puffy. Phil asks if I was stung by a jellyfish. I don't think so- plus it was sore before the beach. Maybe a piece of coral? As he learned surfing- even a tiny piece of coral can lead to lots of pain and swelling. I decide maybe this is a possibility and grab a lancet and try to surgically assess the issue. There is a bunch of clear fluid- but nothing- not relief. I clean it and slather antibiotic on and wrap it back up. By evening it aches and I notice there are more red spots on my finger and few small pink patches on my arm. We are upgrading to rash watch. My arm starts to ache. I don't like the patches and I don't like the creepy way it seems to be moving up my arm. Mostly I'm worried it's gonna creep it's way to the land of lack of lymphnodes and that doesn't seem good. I did like instructed- elevated- wrapped- although not in michelin man style- I was taking precautions since once lymphedema starts- it generally can't be reversed. Phil and I decide if there is no improvement on Sunday- I will go in to the dreaded doctor. Seeing as Sunday was Father's Day- I was pretty much not going to go in. But I felt pretty crappy. My stomach didn't feel right and I had a slight headache. I decided if Monday there was no improvement- I would go in. See a pattern? That's generally what happens.
On Monday, I started the routine of transporting the kids to their various activities and got home for a few minutes rest before heading back out. I stopped in to see my neighbor, who looks at my arm- shakes her head and demands that I call the doctor now. Ok, I say and go home. I wanted to get a quick workout in , but decide to call and make an appointment. The earliest they could see me was wednesday- maybe it would be gone by then. My neighbor knocks on the door and is greatly displeased that I am not seen urgently- I refuse to go to the ER. She says she is picking up the kids- I need to go get it looked at. She's decided I have thrombosis. I know it's not a rash because it hurts and there has not been any itching. I head to the acute care clinic.
By the time I get there and show the triage nurse my creepy rash- It has worked it's way up to darn near the lymph lacking section. Crap. On my intake I put that I had lymphnodes removed and was worried about lymphedema. I was pretty sure that would get me a fast track through triage. She looks at my arm and makes that puzzled face- did you have a mastectomy? She asks. Yes, last year. And they took Lymph nodes? Yeah- only 6 though. And now I have a healthier appreciation for the lyphomaniac highway. A normal little something or other has now become an arm long problem. You are awfully young to have breast cancer? Yeah, we have a family cancer syndrome. Oh, like that Angelina? Sort of- except she only has to worry about breasts and ovaries- we have to worry about brain, breast, every organ, muscles and all bones. Wow, my first husband died of a brain tumor when he was 36. It was very hard. I nod, my brother and dad both died from brain tumors, it's a horrible way to go. We commiserate. She finished all the relevant questions and tells me to hang tight- she'll get me right back. I don't know if it's because I'm a bonafide triage or if I unwittingly punched the cancer card. I watch the tv in the waiting room from my seat. It is explaining how triage works.
Triage was a concept initiated during the Napoleonic wars- when tough decisions had to be made regarding life, limb, and resources- it means to sort or select. The French term became an American one during WWI. There were not enough resources for all the people that could be saved- much less for the ones who weren't going to make it. Nowadays, emergency rooms and mass casualty situations use triage. The acute care clinic- although not an emergency facility- adopts the system. It makes sense and makes sure the most severe cases are seen first. An hour could make a difference between life and death for a potential heart attack but not so much for an ear infection. I sat thinking about it and thought how I felt like I was living in a state of Triage. Most people call it prioritizing- but with the medical elements of our day to day functioning- I am going to call it Triage from here on out. I feel like there is only time for the shark closest to the boat- that I am treading water- waiting for the next shark. I think this is a common problem when you have a chronic condition, disease or family cancer syndrome. You are constantly trying to decide what issue is life or limb and what can be neglected. Kids schoolwork gets triaged for medical care. Mom's mental health care gets triaged to the waiting room because the physical care is more urgent. I didn't have much more time to ponder my life in Triage, because I was in fact on the fast track.
The doc came right in- took a look, made a puzzled face, commented on my low grade not-quite fever(hadn't noticed that) and decides a hearty antibiotic course is called for. I feel deflated. Of course I didn't want to hear my arm needed to be amputated- but I feel like the course of antibiotics is the easy box to check. Yet- it occurs to me- I rush to wonder what oncologic problem might be presenting before ruling out a bacterial one. I should know within a day whether or not it's bacterial. Especially since the orders are for a shot in addition to a 10 day course. I guess it was pretty serious after all. I googled cellulitis. Huh, what do you know? That's what it looked and acted like. A little bit of bacteria where there is a lack of lymph nodes is like taking down one lane of a major highway- things still work- but there is a big jam. Unfortunately- my treating the lymphedema- probably exacerbated the situations effectively limiting the lymph into my hand to carry away the bad bacteria- and pushing bad bacteria down my arm. I'm pretty sure this shiz was not covered in the how to wrap your arm like a michelin man sessions. This is probably considered advanced lymphucation. I know this would fall under the category of- do not injure the lymph node challenged hand or arm- advice that was given. It makes me wonder how so many women function without any lymph nodes due to cancer or radiation treatment. But as with anything in life- we learn from experiences- and this yet one of hopefully many journeys down the lymphtastic freeway. Have you thanked your lymphatic system lately?
Saturday, June 1, 2013
The Importance of Anniversaries
It's June 1. The school year is finally over. The mad rush is dying down- as much as it ever does in a household with 4 kids. I was in the midst of making dinner one night this week when I hear the fedex truck pull up. At the end of last week- during Phillip's 8th grade ceremony- all of the 8th grader's bags were unceremoniously dumped in a back room. When Phillip returned home- his glucometer was missing. We went over" the last place you know you had it drill"-lunch. Being the astute mom- are you absolutely positive you took your blood sugar at lunch? Yes. I mean it- if you didn't we'll talk about that later- MOM, I DID! Ok. Back to school to check- nothing. Tore up the house. Nothing. Time to dig into the emergency kit and break out the old glucometer. This just also happens a day after I get a call from the Pump/glucometer distributor saying that they are no longer contracted with our insurance. That makes sense since we are no longer contracted with our insurance- the military switched providers. I give them the new information- nope not contracted with them either. A day spent making various calls ending in - we'll get back to you.
So our endo nurse- who is just a beautiful, wonderful angel. She is truly one of those people who you call when shit hits the fan and she throws glitter at it, sprays the air freshener and helps you get done what needs to be done, making your life easier. She finds me a number of the manufacturer and says give this a try. I try. They are nice and unconcerned with the insurance as we are allowed a one time replacement for loss or theft and we have not used it yet. She apologizes that it won't be delivered the next day- but probably in 2 days.
So when the fedex truck rolls up- I'm thinking- dang- she made it happen in a day. Lily comes to the back yard carrying a big square box. I just put the chicken on the grill, the weather has finally changed and it's too hot to cook inside. I know it's not his glucometer- because the box is too big and the glucometer would have had to been signed for. It's a package from my mom. Lily is literally vibrating. We go inside and open the box. Inside are 2 scrapbooks- one Jen and Dad themed and one Jen and Bob themed. I have been asking for photos for years and I am excited to look. I start to flip through Dad's album. I feel the gaping hole in my heart which always feels a little extra gapey in May, start to fill in a little. Memories of day to day fun, special trips, pieces of a happy past when I was a kid and carefree and the possibilities were endless. There are a couple goofy pictures AD- after diagnosis- and I remember the great talks dad and I had during the last few months. Smoke pulls me from my reverie and I run outside to flip the chicken. The grill marks are a little heartier than the kids like- but it will be fine.
Lily has been patiently waiting. I let her look through dad's album with the instructions that- I can't answer questions now- I'm making dinner but we will go through the album together after dinner. Being the pragmatic child she is- she waits and merely looks over my shoulder- she and I both know she will have lots and lots of questions. I want to be able to answer them. In that way, these albums are an extra special gift. It gives me jumping off points to share my past and their grandpa and uncle with them. I flip through Bob's album. Lily sneaks off as- there are already so many questions she wants to ask. There is a copy of a "Bob's future" paragraph that he had to write for a class. It talked about lamborghinis, so I call Phillip to read it- since he shares his uncles love of the car. I told him awhile back that Bob used to have posters all over his room, I doubt he remembers. He is reading while I am flipping through pages and Lily is looking on. I get to the second to last picture. It was my birthday, 2 months before Bob died. We were in his hospital room, he is swollen severely from steroids that ironically are keeping the swelling in his brain down. I remember mom telling me the story about how adamant he was that he go get me a birthday present and how hard it was to get him down to the gift shop and how he struggled with the choices. It was a little porcelain unicorn with a gold horn. And like that my heart bursts and shatters as the memories of love and loss break through the walls I set up to get through each day. The days past causing chips and gauges every time someone asks- do you have siblings? Watching lil Phillip do so many of the same things Bob used to love, with his big dreams and big heart. The tears come with gasps and sobs. Phillip hugs me and takes out the trash. It's the only thing he knows to do that might help. Kiera peeks to see the commotion and quietly retreats- she's not comfortable with too much emotion. I distract myself with dinner- trying to salvage what's left of burnt chicken.
I think it's important to feel the loss. It is present every day for me. It used to be that every time I went near a hospital- I felt that loss- but now it's become such our routine- I just feel the exhaustion. Such is mending. It's work. I don't watch sad movies. I can't. I've felt so much sadness- I can not elect to go back to that place for entertainment. I don't need to. The anger pops up at times, and I work hard to direct that towards making positive change. A few years ago a friend's daughter died in May. Her death sandwiched between the anniversaries of Bob and Dad's death. I talked to Phil. We were still relatively new here, I didn't have a lot of friends and this lady was someone I could relate to. I could not possibly go to a baby's funeral in May. It would be hugely inappropriate for me to take my grief out in public at a child's memorial. It was not fair to anyone. He would have to go and explain. Of course. My friend understood. We are better friends now. She is one of the few people here that understands what it is like to care for a sick child and she has endured a loss I hope everyday that I am spared. As a mom now, I am offered a glimpse of the torture my mother went through watching my brother get sicker and sicker. When your child is injured or diagnosed with a life threatening illness- you try to prepare yourself for the eventuality. I am convinced that there is no way to ever be prepared for that loss. So I try to go easy on my mom- when she niggles me about cancer screening on Mother's Day- as I am her baby and she is still doing everything she can to stave off that eventuality.
But the memorial anniversaries are important. It gives us a window to feel the pain and loss with a contained limit, staving off consumption. It gives us an opportunity to remember the good times, the life, the love. It also gives us a distinct time frame to feel it and the opportunity to contain it once again and put it away so that it cannot consume you. It truly is the stuff fairy tales and ghost stories are made of. Human emotion, fear, loss, love, strength. Once a year, the time when the demons are allowed to roam free until they are vanquished to the underworld so everyone can carry about normally.
So our endo nurse- who is just a beautiful, wonderful angel. She is truly one of those people who you call when shit hits the fan and she throws glitter at it, sprays the air freshener and helps you get done what needs to be done, making your life easier. She finds me a number of the manufacturer and says give this a try. I try. They are nice and unconcerned with the insurance as we are allowed a one time replacement for loss or theft and we have not used it yet. She apologizes that it won't be delivered the next day- but probably in 2 days.
So when the fedex truck rolls up- I'm thinking- dang- she made it happen in a day. Lily comes to the back yard carrying a big square box. I just put the chicken on the grill, the weather has finally changed and it's too hot to cook inside. I know it's not his glucometer- because the box is too big and the glucometer would have had to been signed for. It's a package from my mom. Lily is literally vibrating. We go inside and open the box. Inside are 2 scrapbooks- one Jen and Dad themed and one Jen and Bob themed. I have been asking for photos for years and I am excited to look. I start to flip through Dad's album. I feel the gaping hole in my heart which always feels a little extra gapey in May, start to fill in a little. Memories of day to day fun, special trips, pieces of a happy past when I was a kid and carefree and the possibilities were endless. There are a couple goofy pictures AD- after diagnosis- and I remember the great talks dad and I had during the last few months. Smoke pulls me from my reverie and I run outside to flip the chicken. The grill marks are a little heartier than the kids like- but it will be fine.
Lily has been patiently waiting. I let her look through dad's album with the instructions that- I can't answer questions now- I'm making dinner but we will go through the album together after dinner. Being the pragmatic child she is- she waits and merely looks over my shoulder- she and I both know she will have lots and lots of questions. I want to be able to answer them. In that way, these albums are an extra special gift. It gives me jumping off points to share my past and their grandpa and uncle with them. I flip through Bob's album. Lily sneaks off as- there are already so many questions she wants to ask. There is a copy of a "Bob's future" paragraph that he had to write for a class. It talked about lamborghinis, so I call Phillip to read it- since he shares his uncles love of the car. I told him awhile back that Bob used to have posters all over his room, I doubt he remembers. He is reading while I am flipping through pages and Lily is looking on. I get to the second to last picture. It was my birthday, 2 months before Bob died. We were in his hospital room, he is swollen severely from steroids that ironically are keeping the swelling in his brain down. I remember mom telling me the story about how adamant he was that he go get me a birthday present and how hard it was to get him down to the gift shop and how he struggled with the choices. It was a little porcelain unicorn with a gold horn. And like that my heart bursts and shatters as the memories of love and loss break through the walls I set up to get through each day. The days past causing chips and gauges every time someone asks- do you have siblings? Watching lil Phillip do so many of the same things Bob used to love, with his big dreams and big heart. The tears come with gasps and sobs. Phillip hugs me and takes out the trash. It's the only thing he knows to do that might help. Kiera peeks to see the commotion and quietly retreats- she's not comfortable with too much emotion. I distract myself with dinner- trying to salvage what's left of burnt chicken.
I think it's important to feel the loss. It is present every day for me. It used to be that every time I went near a hospital- I felt that loss- but now it's become such our routine- I just feel the exhaustion. Such is mending. It's work. I don't watch sad movies. I can't. I've felt so much sadness- I can not elect to go back to that place for entertainment. I don't need to. The anger pops up at times, and I work hard to direct that towards making positive change. A few years ago a friend's daughter died in May. Her death sandwiched between the anniversaries of Bob and Dad's death. I talked to Phil. We were still relatively new here, I didn't have a lot of friends and this lady was someone I could relate to. I could not possibly go to a baby's funeral in May. It would be hugely inappropriate for me to take my grief out in public at a child's memorial. It was not fair to anyone. He would have to go and explain. Of course. My friend understood. We are better friends now. She is one of the few people here that understands what it is like to care for a sick child and she has endured a loss I hope everyday that I am spared. As a mom now, I am offered a glimpse of the torture my mother went through watching my brother get sicker and sicker. When your child is injured or diagnosed with a life threatening illness- you try to prepare yourself for the eventuality. I am convinced that there is no way to ever be prepared for that loss. So I try to go easy on my mom- when she niggles me about cancer screening on Mother's Day- as I am her baby and she is still doing everything she can to stave off that eventuality.
But the memorial anniversaries are important. It gives us a window to feel the pain and loss with a contained limit, staving off consumption. It gives us an opportunity to remember the good times, the life, the love. It also gives us a distinct time frame to feel it and the opportunity to contain it once again and put it away so that it cannot consume you. It truly is the stuff fairy tales and ghost stories are made of. Human emotion, fear, loss, love, strength. Once a year, the time when the demons are allowed to roam free until they are vanquished to the underworld so everyone can carry about normally.
Saturday, May 25, 2013
Beyond the HoneyBadger: Finding Honor Courage and Commitment
Life experiences alter personal views of "the big picture". I feel we are constantly preaching to our kids- keep an eye on the big picture. How does what you are doing affect those around you and your future? Kids are not hard wired to do this. It must be taught, learned, impressed, steamrolled or transferred however possible. It's rather ironic considering the lingering thoughts of impermanence that go through your mind when you have a hereditary cancer syndrome.
One year ago, I sat through the girls' May Day celebration recently armed with the knowledge that I had 3 tumors in my breast. I still had the bandage protecting my arm where a sarcoma tumor had been removed with insufficient margins. My husband was across the ocean. All I could think about was those 3 girls and their performances and how much it meant for me to be there and that I had absolutely NO idea how I would be doing next year.
I can now say that at times, dealing with 4 tumors is infinitely less stressful than dealing with some of the wack jobs of parents that litter our community. It saddens me so greatly that these certain few dregs are allowed to ruin a sense of community due to litigious threats. If only I could surgically remove these cancers of the community- I would truly have earned my place as an effective social contributor. I often think the term bullying has been way over emphasized. Bullying is and always has been a real problem- and I appreciate the steps at awareness- but sometimes the only solution is to just stand up to bullies. I've found that you will always run in to bullies. People can be wonderful and supportive and generous- as we learned again last year. Families at school, we had never met- brought us dinners when they heard of my cancer. The PTA president checked on me daily. I learned that word travels pretty fast in a small community. We didn't tell a lot of people, but we needed the girls to have the extra support from their teachers and I didn't want them to think I was slacking at home. People can also be selfish and dishonest and conniving. Other people in these circles try and explain to you that this person"means well". No. Who do they mean well for-their child? Is it doing your child a service if you create a tornado of stress and disarray around them merely so they will not feel bad or left out of a position that they did not earn?
There is one parent in particular that brought such an air of negativity to the entire end of this school year. She is the type of person whose narcissistic insecurity is cloaked in sickly sweet honey. So that if on certain occasions I cannot completely ignore her presence in my world and if it becomes absolutely necessary to refer to her at all- as in this post- she will be the Honeybadger. She would delight in the name and the fact that she is being recognized. She loves recognition. She is the type that goes around telling you how wonderful she and her children are and that she can recognize you are a good parent because she is such a good parent and she can tell that because your children are good children and she has good children and she is a good parent so you must be a good parent. Over and Over. She is the type of parent that publicly announces her 12 year old's time of the month as an excuse for poor behavior. Yet when her child gets in-school suspension for threatening another child and bullying- she calls you to tell you it is a misunderstanding and you should know that because you are a good parent and she is a good parent and oh her daughter told your daughter about the incident and if anyone asks your daughter about said incident she needs to say she doesn't know anything so her child doesn't get a bonafide suspension. That seems like an exemplary case of good parenting to me.
I am airing my grievances so I can be done with this. I spent the better part of the year avoiding her craziness and she continued to bring it into my world. She negatively affected not only me and my children- but the ENTIRE school community. The ENTIRE May Day program was put on hold so she could air her grievances- mainly that she thought her daughter deserved to be on the court. Part of me says- Jen Mallory are you seriously in the grand scheme of life and cancer and death- gonna air grievances over idiotic drama? The answer is yes- 1) because in the persuit of normal- this is a normal problem people face daily and 2) this person is a cancer and my resounding view is that cancer must go. Since there is no cure for stupid and this type of person will not change- I have to clean my energy and this is part of that process. So here are my list of grievances against said parent:
1) The aforementioned asking my child to lie for her child.
2) Littering my inbox with overdramatic emails about the girls DC Fundraisers/Trip and not knowing what their roommate "was capable of".
3) Having her child steal the list of May Day Selectees and their ranking.
4)Using said list to disrupt the entire production and littering the email of the Complex superintendent with her drivel about corruption.
5)Acting like an overall asshole
6) Bullying my daughter
7) Encouraging/Allowing her daughter to bully my daughter
8) Having to spend any time at all dealing with her nonsense- in the form of meetings with administration, meetings with teachers, meetings with other parents.
Girls can be mean. I will not list the grievances against her child. She is a child and I hope through the careful guidance of school staff and other outside influences- said child can ultimately learn the err of her mother's ways. Unfortunately experience and common sense tell me she will grow up to act like the entitled princess she is treated as. All I know is that I stood from a distance and watched her follow my daughter into the bathroom and run across the field to tattle as Kiera came out shocked and in tears over her comments on Kiera's hula . This was only one of several incidents I witnessed. I heard of several more from Kiera and other girls- I don't let them gossip but I am beginning to see they were relating truth. It was a learning experience for all of us. It afforded me many, many, many opportunities to use Honeybadger and her badgering offspring as examples of how not to behave and how 2 people's negative behavior can detrimentally affect an entire community. I used it as a teaching opportunity for my kids and some of the school's International Baccalaureate core values- Honeybadger did not show respect for the program, the staff or the students when she falsely claimed corruption in the May Day selection process. The staff showed there was integrity in the selection process, cooperated and communicated the process. The process was in fact flawed and steps were already being taken to remedy the confusion so that future years would be easier. It takes courage to stand up and fight when you think you have been wronged- yet Honeybadger went about the process with a complete lack of tolerance, principle and overwrought with dishonesty. Remember- "Honeybadger don't give a shit- honeybadger takes what he wants"
I debated whether or not speaking to Honeybadger would make any difference. She is the parent who tells any school staff member that corrects her child that they are to talk to her directly if her child misbehaves. Unfortunately when staff does this- 8 excuses are at the ready, mostly it's always that time of the month- and the behavior does not change. When the child is not awarded recognition at the school assembly for exhibiting the values of the program- the child is allowed to stay home , but of course I am assuming that was because it was that time of month. When I pick my child up in school and she is in tears because said Honeybadger told her that she should not be doing hula for the talent show - well then it is time for me to step in and have a discussion with this person. Log another 40 minutes of my life wasted on this drivel. And I was so perpetually sad and angry that I allowed myself to feel stress when this person is not worth it. As we are in the car on the way home- I haven't even calmed down enough to talk to my kids and Kiera reaches over and takes my hand and says "Thank You. " I say- for what- after all I didn't buy them ice cream or drinks or snacks- that's usually the only time I get thanks. " For standing up for me." Through all the stress- it was right there before me all the time. Honeybadger is a bully and my daughter wasn't being over emotional- she was being bullied. My mama bear instinct was to protect my child and it was right. Sometimes we can not protect our children from the experience, but we can teach them how to better protect their emotions and reactions to people that are undeserving of our time and energy. This woman tried to shake my daughter's confidence. She succeeded briefly. There was a time I wanted to pull her from the May Day court so I didn't have to feel the stress- but I knew how much it meant to her. I later had parents tell me they were so glad I didn't pull her that Kiera embodied the spirit of May Day and we all knew who would have campaigned for her spot.
I think in the process, we all learned. I made new friends who knew of the situation and showed me and my kids support. Friends that show the values I encourage my children to emulate. As we showed up to the 6th Grade Promotion ceremony- Kiera noticed that Honeybadger had half a dozen balloons- several blow up toys and bags of leis. Tradition in Hawaii is to literally smother the "graduate" in leis. I respect the tradition, but the clausterphobic allergy sufferer in me lies awake dreading accomplishing anything in this culture. I spent the night before making 2 yarn and kukui nut leis in Kiera's favorite color. Flowers die, but these leis would be tokens of how proud her dad and I are of her hard work and growth this year as a young lady. As we sat through the ceremony, the special awards were being given. A marine has been tasked with giving the big award- THE award for one girl and one boy who have exemplified the school's values and exceptional academic performance. Their names will go on a plaque in the office for eternity. Kiera spent hours and hours working on school work this year. She really tried. It was not easy for her- academics are a struggle- but she worked hard. Her grades weren't always exceptional- but compared to previous years- she really came into her own. So when the Captain calls her name- I am floored and so unbelievably happy for the little mighty mite I can hardly contain myself. I know there are several other kids who have worked as hard as her- so for someone other than me or her dad to acknowledge her was enormous! It was further acknowldgement that in life- there will always be people who try to knock you down. When you keep your calm and carry on, it will all work out and others notice. And then maybe a marine will make everyone stand at attention and give you award. Yeah that's kinda cool. 2 people can do a lot of damage in a community. So imagine how much good 2 can do. I am the very proud mama of one of those 2.
In the world of scoreless games and everyone wins trophies- they have become devalued. Normally I emphasize personal strength and that awards do not give you merit- you earn merit and the merit is a personal scorecard. I've caught Kiera reading her award once or twice- so I finally sat down and read it and realized that a simple piece of paper with a few carefully chosen words can once again can be valued- not for it's existence- but for what it stands for and what we stand for.
Commanding Officer, Headquarters Battalion, Marine Corps Base Hawaii takes pleasure in commending Kiera Mallory for exceptional academic performance and student leadership during the 2012-2013 school year. Throughout the academic year, Kiera Mallory demonstrated a superior level of leadership, maturity, and academic contribution beyond that of her fellow students. Her outstanding work ethic and embodiment of our Marine Corps' core values has culminated in her selection as the 2013 Iroquois Point Elementary School's Marine Corps Honor, Courage, and Commitment Award recipient. Kiera Mallory's display of hard work and dedication to academics reflected great credit upon her and were in keeping with the highest traditions of Iroquois Point Elementary School's International Baccalaureate Attitudes and the United States Marine Corps' Core values of Honor, Courage, and Commitment. Given this 21st Day of May.
One year ago, I sat through the girls' May Day celebration recently armed with the knowledge that I had 3 tumors in my breast. I still had the bandage protecting my arm where a sarcoma tumor had been removed with insufficient margins. My husband was across the ocean. All I could think about was those 3 girls and their performances and how much it meant for me to be there and that I had absolutely NO idea how I would be doing next year.
I can now say that at times, dealing with 4 tumors is infinitely less stressful than dealing with some of the wack jobs of parents that litter our community. It saddens me so greatly that these certain few dregs are allowed to ruin a sense of community due to litigious threats. If only I could surgically remove these cancers of the community- I would truly have earned my place as an effective social contributor. I often think the term bullying has been way over emphasized. Bullying is and always has been a real problem- and I appreciate the steps at awareness- but sometimes the only solution is to just stand up to bullies. I've found that you will always run in to bullies. People can be wonderful and supportive and generous- as we learned again last year. Families at school, we had never met- brought us dinners when they heard of my cancer. The PTA president checked on me daily. I learned that word travels pretty fast in a small community. We didn't tell a lot of people, but we needed the girls to have the extra support from their teachers and I didn't want them to think I was slacking at home. People can also be selfish and dishonest and conniving. Other people in these circles try and explain to you that this person"means well". No. Who do they mean well for-their child? Is it doing your child a service if you create a tornado of stress and disarray around them merely so they will not feel bad or left out of a position that they did not earn?
There is one parent in particular that brought such an air of negativity to the entire end of this school year. She is the type of person whose narcissistic insecurity is cloaked in sickly sweet honey. So that if on certain occasions I cannot completely ignore her presence in my world and if it becomes absolutely necessary to refer to her at all- as in this post- she will be the Honeybadger. She would delight in the name and the fact that she is being recognized. She loves recognition. She is the type that goes around telling you how wonderful she and her children are and that she can recognize you are a good parent because she is such a good parent and she can tell that because your children are good children and she has good children and she is a good parent so you must be a good parent. Over and Over. She is the type of parent that publicly announces her 12 year old's time of the month as an excuse for poor behavior. Yet when her child gets in-school suspension for threatening another child and bullying- she calls you to tell you it is a misunderstanding and you should know that because you are a good parent and she is a good parent and oh her daughter told your daughter about the incident and if anyone asks your daughter about said incident she needs to say she doesn't know anything so her child doesn't get a bonafide suspension. That seems like an exemplary case of good parenting to me.
I am airing my grievances so I can be done with this. I spent the better part of the year avoiding her craziness and she continued to bring it into my world. She negatively affected not only me and my children- but the ENTIRE school community. The ENTIRE May Day program was put on hold so she could air her grievances- mainly that she thought her daughter deserved to be on the court. Part of me says- Jen Mallory are you seriously in the grand scheme of life and cancer and death- gonna air grievances over idiotic drama? The answer is yes- 1) because in the persuit of normal- this is a normal problem people face daily and 2) this person is a cancer and my resounding view is that cancer must go. Since there is no cure for stupid and this type of person will not change- I have to clean my energy and this is part of that process. So here are my list of grievances against said parent:
1) The aforementioned asking my child to lie for her child.
2) Littering my inbox with overdramatic emails about the girls DC Fundraisers/Trip and not knowing what their roommate "was capable of".
3) Having her child steal the list of May Day Selectees and their ranking.
4)Using said list to disrupt the entire production and littering the email of the Complex superintendent with her drivel about corruption.
5)Acting like an overall asshole
6) Bullying my daughter
7) Encouraging/Allowing her daughter to bully my daughter
8) Having to spend any time at all dealing with her nonsense- in the form of meetings with administration, meetings with teachers, meetings with other parents.
Girls can be mean. I will not list the grievances against her child. She is a child and I hope through the careful guidance of school staff and other outside influences- said child can ultimately learn the err of her mother's ways. Unfortunately experience and common sense tell me she will grow up to act like the entitled princess she is treated as. All I know is that I stood from a distance and watched her follow my daughter into the bathroom and run across the field to tattle as Kiera came out shocked and in tears over her comments on Kiera's hula . This was only one of several incidents I witnessed. I heard of several more from Kiera and other girls- I don't let them gossip but I am beginning to see they were relating truth. It was a learning experience for all of us. It afforded me many, many, many opportunities to use Honeybadger and her badgering offspring as examples of how not to behave and how 2 people's negative behavior can detrimentally affect an entire community. I used it as a teaching opportunity for my kids and some of the school's International Baccalaureate core values- Honeybadger did not show respect for the program, the staff or the students when she falsely claimed corruption in the May Day selection process. The staff showed there was integrity in the selection process, cooperated and communicated the process. The process was in fact flawed and steps were already being taken to remedy the confusion so that future years would be easier. It takes courage to stand up and fight when you think you have been wronged- yet Honeybadger went about the process with a complete lack of tolerance, principle and overwrought with dishonesty. Remember- "Honeybadger don't give a shit- honeybadger takes what he wants"
I debated whether or not speaking to Honeybadger would make any difference. She is the parent who tells any school staff member that corrects her child that they are to talk to her directly if her child misbehaves. Unfortunately when staff does this- 8 excuses are at the ready, mostly it's always that time of the month- and the behavior does not change. When the child is not awarded recognition at the school assembly for exhibiting the values of the program- the child is allowed to stay home , but of course I am assuming that was because it was that time of month. When I pick my child up in school and she is in tears because said Honeybadger told her that she should not be doing hula for the talent show - well then it is time for me to step in and have a discussion with this person. Log another 40 minutes of my life wasted on this drivel. And I was so perpetually sad and angry that I allowed myself to feel stress when this person is not worth it. As we are in the car on the way home- I haven't even calmed down enough to talk to my kids and Kiera reaches over and takes my hand and says "Thank You. " I say- for what- after all I didn't buy them ice cream or drinks or snacks- that's usually the only time I get thanks. " For standing up for me." Through all the stress- it was right there before me all the time. Honeybadger is a bully and my daughter wasn't being over emotional- she was being bullied. My mama bear instinct was to protect my child and it was right. Sometimes we can not protect our children from the experience, but we can teach them how to better protect their emotions and reactions to people that are undeserving of our time and energy. This woman tried to shake my daughter's confidence. She succeeded briefly. There was a time I wanted to pull her from the May Day court so I didn't have to feel the stress- but I knew how much it meant to her. I later had parents tell me they were so glad I didn't pull her that Kiera embodied the spirit of May Day and we all knew who would have campaigned for her spot.
I think in the process, we all learned. I made new friends who knew of the situation and showed me and my kids support. Friends that show the values I encourage my children to emulate. As we showed up to the 6th Grade Promotion ceremony- Kiera noticed that Honeybadger had half a dozen balloons- several blow up toys and bags of leis. Tradition in Hawaii is to literally smother the "graduate" in leis. I respect the tradition, but the clausterphobic allergy sufferer in me lies awake dreading accomplishing anything in this culture. I spent the night before making 2 yarn and kukui nut leis in Kiera's favorite color. Flowers die, but these leis would be tokens of how proud her dad and I are of her hard work and growth this year as a young lady. As we sat through the ceremony, the special awards were being given. A marine has been tasked with giving the big award- THE award for one girl and one boy who have exemplified the school's values and exceptional academic performance. Their names will go on a plaque in the office for eternity. Kiera spent hours and hours working on school work this year. She really tried. It was not easy for her- academics are a struggle- but she worked hard. Her grades weren't always exceptional- but compared to previous years- she really came into her own. So when the Captain calls her name- I am floored and so unbelievably happy for the little mighty mite I can hardly contain myself. I know there are several other kids who have worked as hard as her- so for someone other than me or her dad to acknowledge her was enormous! It was further acknowldgement that in life- there will always be people who try to knock you down. When you keep your calm and carry on, it will all work out and others notice. And then maybe a marine will make everyone stand at attention and give you award. Yeah that's kinda cool. 2 people can do a lot of damage in a community. So imagine how much good 2 can do. I am the very proud mama of one of those 2.
In the world of scoreless games and everyone wins trophies- they have become devalued. Normally I emphasize personal strength and that awards do not give you merit- you earn merit and the merit is a personal scorecard. I've caught Kiera reading her award once or twice- so I finally sat down and read it and realized that a simple piece of paper with a few carefully chosen words can once again can be valued- not for it's existence- but for what it stands for and what we stand for.
Commanding Officer, Headquarters Battalion, Marine Corps Base Hawaii takes pleasure in commending Kiera Mallory for exceptional academic performance and student leadership during the 2012-2013 school year. Throughout the academic year, Kiera Mallory demonstrated a superior level of leadership, maturity, and academic contribution beyond that of her fellow students. Her outstanding work ethic and embodiment of our Marine Corps' core values has culminated in her selection as the 2013 Iroquois Point Elementary School's Marine Corps Honor, Courage, and Commitment Award recipient. Kiera Mallory's display of hard work and dedication to academics reflected great credit upon her and were in keeping with the highest traditions of Iroquois Point Elementary School's International Baccalaureate Attitudes and the United States Marine Corps' Core values of Honor, Courage, and Commitment. Given this 21st Day of May.
Saturday, May 18, 2013
Good Grief
Grief is a really funny thing. It is malleable, fleeting, steadfast and lingering. It can blindside you. It can creep into your body and soul. Even the institutional professionals cannot agree on the precise qualifications of grief. Grief is a normal emotion. Any creature that can feel love as intensely as we humans do, should be able to feel the exact opposite to an equal or even greater degree.
In this day and age- there is a pill for everything. Are you too happy? A little happy is ok, a lot of happy is ok, but too much happy- we call that manic and it's not ok and there's a pill for that. Are you sad? A little sad is Ok, alot of sad is ok but if it lingers too long we call that depression and there's lots of pills for that.
In college- I took several psychology courses- one of my favorites was Abnormal Psychology. As a Science major- I knew full well how the scientific/medical community tended to look down their noses at the Psychological professions. How can we call anything science that is so nebulously unquantifiable, vast and ever changing as the human mind? Yet any good, experienced scientist will testify- the best scientific advances usually happen from a chance error. In our course- we studied the DSM-4- the Bible of mental disorders, quite thoroughly. It was entertaining to try and diagnose all my quirky friends and relatives. Sometimes it was frightening. It offered me some clarity on a lot of issues. Although I had a couple years under my belt in college- I was still battling the grief of losing my dad the week before my high school graduation. It was a mere 3 years before that I lost my brother to the same disease. There were times when the grief was suffocating.
I find it strangely ironic that the release of the DSM-5 comes at a time of year when the grief feels fresh. Today is the 19th anniversary of my father's death. Next week will be the anniversary of my brother's death. If I stop to think about it, it takes my breath away. If I lingered too long- I might suffocate. There were several changes in the DSM-5 that guides how mental health professionals quantify grief and the precise point grief becomes something more akin to depression. The debate is hearty. Many definitions of grief include depression and all definitions of depression include grief. Anyone who has experienced loss can tell you the ebb and flow is neither regular nor set to any calendar. There is no egg timer that lets you know when your grieving period has expired. Culturally- certain practices are put in place that mold this period. As someone who's experienced grief on many levels- I have a profound appreciation for the faiths and cultures that have practices in place that lovingly guide the bereaved through the process. Multitudes of scientific and psychological studies have quantified stages, phases and even types of grievers- all with the caveat- you may fit into one or many of these stages or phases at any given time- you may regress or spend only brief periods in any given phase. I can see how the science minded heads are reeling.
From the point of experience- I can tell you grief never, ever goes away completely. I could not tell you how I manage to function despite it. I know there have been periods in my life that I have also been depressed. Sometimes these periods overlap- sometimes they were mutually exclusive. There is most definitely a process and when talking to others whose experiences are similar- the kinship is silent validation that your grief is both acceptable and real. You know it's real- but after a certain time it usually feels as if those around you need for you to move on. I think half of the process is just learning how to relate to others in their own process of relating to your grief. There were times shortly after deaths of loved ones where I felt genuinely happy. Almost immediately upon realization of happiness- the guilt sets in- as one is clearly a bad mourner to be feeling such happiness. My relatives- being of good Irish decent quickly mend any antagonistic interpretation by the good old Irish Wake. Numbed by libations- all emotions are acceptable and appreciated- greatly accelerating the fluctuating and cyclical nature of healing. Sometimes we don't speak of the loved one often- not because they are not close to our hearts- but because those memories are the glue holding the cracked pieces of our hearts in place. We all deal differently. So much discord results from people judging others feeling based on their personal scale of truism. Not everyone needs to have a shrine to their loved on in their living room to remember them, they carry their memories everywhere. Some need that constant reminder as a way of acclimating the loss. Just as you don't feel every fiber of cotton in your tshirt hitting your skin- sometimes that shrine provides the numbness to acclimate the profound grief. It's about finding the process that works for you. You will not recognize it- there is no time limit on finding it- and if you need help in doing so- you should seek it.
Sometimes I feel the energy of my dad or my brother. I know there are folks who can rationalize it as some sort of synaptic glitch. Perhaps that is all consciousness is after all is one big synaptic glitch- after all so many of the best scientific leaps happen after some inborn error. Sometimes it is out of the blue- with no stress to provoke it. There are times where I feel the grief and it is intensified by the lack of signs. My dad always swore if he could come back and give us signs, he would. My aunt keeps track of the signs. We sometimes question the intensity and validity of certain signs- but she is always the first person we call for sign approval. There is a part of us that wants to believe, needs to believe that there is more- that we all have a connection that is not severed by death. Many times this is what pulls us from the depths of despair. There are those who can never manage to climb out. You can put a label on it- categorize it in a book- but that only quantifies it outside of the person's experience- for each person's experience is physically real to them. Not everything can be fixed. Not all grief goes away. Sometimes a gigantic tree pops us in the middle of your yard- you can chop it down or landscape around it. It really isn't your neighbor's business unless you are asking him to help chop it down or allow it to branch over his yard. Grief affects everyone.
This time of year, the grief hangs over me like a familiar musty blanket. The anticipation of grief this time of year is more debilitating than the grief. Sometimes I dream about dad or Bob. I like to think it's their way of saying hi. I know they are just dreams. Sometimes I hear a song that immediately transports me to a grieving state. Moreso lately I see them in my children. Lily's bubbly personality and size are a pintsize version of my dad. Lil Phillip has hands like Bob's and has the quiet, intense personality his uncle had. The year my brother died was my parent's 20th wedding anniversary. Dad made arrangements to take mom to Hawaii. Mom's grief had consumed her in a way no one but a mother who had lost a child could ever possibly begin to understand- dad was trying to help. Well they could not leave me to my own devices- an extra ticket was bought for me- talk about 3rd wheel. Fortunately I was just slightly older than lil Phillip is now- I didn't want to be around grown ups- so I made myself scarce. I remember them having Mai Tais near the beach in Waikiki while I walked along the beach seeing if I could make it to Diamondhead. We stayed at a hotel called the Waikiki Joy hotel. I remember it being a short walk from the beach and laying on the beach while dad got in a few business calls. That was dad- always finding creative ways to manage finances and his family. Years later when we moved here- I looked up the Waikiki Joy hotel. I knew it still existed- but it's not the kinda place you hear about. Heck after 15 years- it could have been the kind of establishment that rented rooms by the hour for all I knew. I never did find it driving around.
Last week was a tough week with May Day drama and practices, combined with normal activity and then on top of it throw in talent show try outs. All 3 girls wanted to try out. Lily and Bella chose songs and spent evenings and shower time belting out tunes in various keys. I started stressing about the potential public reception of their unique talents and what it would mean for their egos. I tried to hold fast to my dad's advice to me when I was young- do it now while you can- you won't have the courage to when you get older- I hoped it would be the same for them. I made peace with it.
Kiera and I woke up really early to glue back every short strand of hair and get ready for May Day- we hopped in the car and I was finally calm. Everything was going to be fine- and if it wasn't- it would be one helluva funny story later. We are halfway there when an ad comes on the radio. I never have to hear ads- I have trained the kids to find a song when they come on. Yet Kiera sat pensively next to me. The announcer is inviting folks down to the Waikiki Joy hotel for Karaoke tonight. Like that, the musty blanket of saddness decended. I asked Kiera if she had ever heard of that hotel. She said no and looked at me with concern. I didn't want her to go into May Day thinking I was sad about her- so I explained what was going through my mind and ultimately told her I thought it was dad's way of patting me on the back and going with the fake it til you make it attitude. In 8 years- I've never heard anything of the Waikiki Joy here. Later I asked Phil if he'd ever heard of it and 2 moms at May Day- no one heard of it. SO whether it was a crazy coincidence or a sign- it was the emotional release I needed to face these anniversaries head on. It's not always easy- sometimes grief is hugely inconvenient. Sometimes it is a reminder of all we've lost but also how far we've come. It becomes a part of us and is a part of what we become- so to it I do owe a certain amount of gratitude. And to that part of it I say, Good Grief.
In this day and age- there is a pill for everything. Are you too happy? A little happy is ok, a lot of happy is ok, but too much happy- we call that manic and it's not ok and there's a pill for that. Are you sad? A little sad is Ok, alot of sad is ok but if it lingers too long we call that depression and there's lots of pills for that.
In college- I took several psychology courses- one of my favorites was Abnormal Psychology. As a Science major- I knew full well how the scientific/medical community tended to look down their noses at the Psychological professions. How can we call anything science that is so nebulously unquantifiable, vast and ever changing as the human mind? Yet any good, experienced scientist will testify- the best scientific advances usually happen from a chance error. In our course- we studied the DSM-4- the Bible of mental disorders, quite thoroughly. It was entertaining to try and diagnose all my quirky friends and relatives. Sometimes it was frightening. It offered me some clarity on a lot of issues. Although I had a couple years under my belt in college- I was still battling the grief of losing my dad the week before my high school graduation. It was a mere 3 years before that I lost my brother to the same disease. There were times when the grief was suffocating.
I find it strangely ironic that the release of the DSM-5 comes at a time of year when the grief feels fresh. Today is the 19th anniversary of my father's death. Next week will be the anniversary of my brother's death. If I stop to think about it, it takes my breath away. If I lingered too long- I might suffocate. There were several changes in the DSM-5 that guides how mental health professionals quantify grief and the precise point grief becomes something more akin to depression. The debate is hearty. Many definitions of grief include depression and all definitions of depression include grief. Anyone who has experienced loss can tell you the ebb and flow is neither regular nor set to any calendar. There is no egg timer that lets you know when your grieving period has expired. Culturally- certain practices are put in place that mold this period. As someone who's experienced grief on many levels- I have a profound appreciation for the faiths and cultures that have practices in place that lovingly guide the bereaved through the process. Multitudes of scientific and psychological studies have quantified stages, phases and even types of grievers- all with the caveat- you may fit into one or many of these stages or phases at any given time- you may regress or spend only brief periods in any given phase. I can see how the science minded heads are reeling.
From the point of experience- I can tell you grief never, ever goes away completely. I could not tell you how I manage to function despite it. I know there have been periods in my life that I have also been depressed. Sometimes these periods overlap- sometimes they were mutually exclusive. There is most definitely a process and when talking to others whose experiences are similar- the kinship is silent validation that your grief is both acceptable and real. You know it's real- but after a certain time it usually feels as if those around you need for you to move on. I think half of the process is just learning how to relate to others in their own process of relating to your grief. There were times shortly after deaths of loved ones where I felt genuinely happy. Almost immediately upon realization of happiness- the guilt sets in- as one is clearly a bad mourner to be feeling such happiness. My relatives- being of good Irish decent quickly mend any antagonistic interpretation by the good old Irish Wake. Numbed by libations- all emotions are acceptable and appreciated- greatly accelerating the fluctuating and cyclical nature of healing. Sometimes we don't speak of the loved one often- not because they are not close to our hearts- but because those memories are the glue holding the cracked pieces of our hearts in place. We all deal differently. So much discord results from people judging others feeling based on their personal scale of truism. Not everyone needs to have a shrine to their loved on in their living room to remember them, they carry their memories everywhere. Some need that constant reminder as a way of acclimating the loss. Just as you don't feel every fiber of cotton in your tshirt hitting your skin- sometimes that shrine provides the numbness to acclimate the profound grief. It's about finding the process that works for you. You will not recognize it- there is no time limit on finding it- and if you need help in doing so- you should seek it.
Sometimes I feel the energy of my dad or my brother. I know there are folks who can rationalize it as some sort of synaptic glitch. Perhaps that is all consciousness is after all is one big synaptic glitch- after all so many of the best scientific leaps happen after some inborn error. Sometimes it is out of the blue- with no stress to provoke it. There are times where I feel the grief and it is intensified by the lack of signs. My dad always swore if he could come back and give us signs, he would. My aunt keeps track of the signs. We sometimes question the intensity and validity of certain signs- but she is always the first person we call for sign approval. There is a part of us that wants to believe, needs to believe that there is more- that we all have a connection that is not severed by death. Many times this is what pulls us from the depths of despair. There are those who can never manage to climb out. You can put a label on it- categorize it in a book- but that only quantifies it outside of the person's experience- for each person's experience is physically real to them. Not everything can be fixed. Not all grief goes away. Sometimes a gigantic tree pops us in the middle of your yard- you can chop it down or landscape around it. It really isn't your neighbor's business unless you are asking him to help chop it down or allow it to branch over his yard. Grief affects everyone.
This time of year, the grief hangs over me like a familiar musty blanket. The anticipation of grief this time of year is more debilitating than the grief. Sometimes I dream about dad or Bob. I like to think it's their way of saying hi. I know they are just dreams. Sometimes I hear a song that immediately transports me to a grieving state. Moreso lately I see them in my children. Lily's bubbly personality and size are a pintsize version of my dad. Lil Phillip has hands like Bob's and has the quiet, intense personality his uncle had. The year my brother died was my parent's 20th wedding anniversary. Dad made arrangements to take mom to Hawaii. Mom's grief had consumed her in a way no one but a mother who had lost a child could ever possibly begin to understand- dad was trying to help. Well they could not leave me to my own devices- an extra ticket was bought for me- talk about 3rd wheel. Fortunately I was just slightly older than lil Phillip is now- I didn't want to be around grown ups- so I made myself scarce. I remember them having Mai Tais near the beach in Waikiki while I walked along the beach seeing if I could make it to Diamondhead. We stayed at a hotel called the Waikiki Joy hotel. I remember it being a short walk from the beach and laying on the beach while dad got in a few business calls. That was dad- always finding creative ways to manage finances and his family. Years later when we moved here- I looked up the Waikiki Joy hotel. I knew it still existed- but it's not the kinda place you hear about. Heck after 15 years- it could have been the kind of establishment that rented rooms by the hour for all I knew. I never did find it driving around.
Kiera and I woke up really early to glue back every short strand of hair and get ready for May Day- we hopped in the car and I was finally calm. Everything was going to be fine- and if it wasn't- it would be one helluva funny story later. We are halfway there when an ad comes on the radio. I never have to hear ads- I have trained the kids to find a song when they come on. Yet Kiera sat pensively next to me. The announcer is inviting folks down to the Waikiki Joy hotel for Karaoke tonight. Like that, the musty blanket of saddness decended. I asked Kiera if she had ever heard of that hotel. She said no and looked at me with concern. I didn't want her to go into May Day thinking I was sad about her- so I explained what was going through my mind and ultimately told her I thought it was dad's way of patting me on the back and going with the fake it til you make it attitude. In 8 years- I've never heard anything of the Waikiki Joy here. Later I asked Phil if he'd ever heard of it and 2 moms at May Day- no one heard of it. SO whether it was a crazy coincidence or a sign- it was the emotional release I needed to face these anniversaries head on. It's not always easy- sometimes grief is hugely inconvenient. Sometimes it is a reminder of all we've lost but also how far we've come. It becomes a part of us and is a part of what we become- so to it I do owe a certain amount of gratitude. And to that part of it I say, Good Grief.
Thursday, May 16, 2013
TATAs on Notice? I'm so Ovary it.
The world is abuzz with Angelina Jolie's choice to have prophylactic surgery. To be honest my first thought was-Big Deal- in Hollywood- that kind of surgery is done over the weekend. Boobs are a dime a dozen- so are surgeries. I appreciate Angelina's "humanitarian" efforts to raise awareness of a very real issue. She opened herself up to a lot of scrutiny and judgement- but she has always been in the public eye- that is not new. Folks have been judging her since she was a child on various aspects of her physical form and decision making prowess. No one can know for sure why she went public- perhaps it was to raise awareness, perhaps it was to stave off speculative plastic surgery rumors and perhaps she just needed the support from her community. To be blatantly honest with myself- I am a bit envious. It's has been almost a year exactly to when I had my first mastectomy. Not everyone knows about it. I'm a publicly private kinda person. I am still a little unbalanced and I am not referring to my mental state. Over the past year- I have thought about removing the other breast, many many many times. Had I taken more time initially to ponder it- looking back- I might have gone for the 2 for 1 deal. I always said at the first sign of trouble- they were gone. But life chugs along with four kids- 2 of whom have serious medical conditions that require full time monitoring. I don't have a chef or a nanny or the other "support" to make these decisions easier. I am not downplaying any of the emotional stress that accompanies a major decision like this- I'm just saying the real world applications are a different ball game.
BRCA is serious. It is a huge increased risk of breast and ovarian cancers. That mutation has monumentally shaped the breast cancer game on so many levels. Ovarian cancer is a silent killer and so difficult to detect. Yet both of these organs can be removed. BRCA is very well understood- as is breast cancer- yet the treatments are still toxic and aggressive. It is one of MANY genetic mutations that predisposes women AND men to breast cancer. Cowden Syndrome, Peutz-Jeghers, Familial diffuse type gastric cancer and Li Fraumeni Syndrome to name a few. Certain Li Fraumeni Syndrome mutations(because although BRCA has 2- as of a 2003 published paper- Li Fraumeni Syndrome has over 250 known germline mutations.) A friend of mine says LFS is like BRCA on crack. I say it is the mother of all hereditary cancer syndromes.
Mostly it's just hard. It's hard not knowing which body part is going to go bad. For starters- the "Main" LFS cancers are brain, breast, sarcoma and adrenal. I know for sure if you remove a certain one of those prophylactically- you will have an explanation for most of what goes on in politics. The spectrum of cancers a LFS mutant can achieve is not limited or excluded to these- these are the ones that are well documented in certain families. These are the types of tumors that make docs wonder if a person has a family cancer syndrome. The mutation makes our cells unable to suppress tumors and in some instances- that broken mutation actually makes cancer cells angrier. One study boldly states that women with a certain LFS mutation have 100% chance of developing cancer by age 85(men have a 73% chance risk). The overall risk of women with LFS developing cancer by age 40 is 50% and both these percentages are so high because of the breast cancer incidence. Those of us with LFS know more young ladies in the 20-25 range who have battled the disease than we'd like. Ask them how they feel about prophylactic surgery. I feel fortunate that I was in my 30's, married to an amazing man who loves me as much as a uniboober as he did before(- probably more )and that I had the opportunity to have and breast feed my children. I know women who faced breast cancer in their early 20's- the physical and emotional scars are debilitating. The long term effects are painful. In a society where so much hinges on physical beauty - can you imagine embarking on the dating scene with a roadmap of scars for a chest and a genetic condition that all but guarantees you will be further damaged by 40 and really flipping grateful to be alive after 60? Most young women worry about pregnancy and disease- young LFS women are no different- they worry that the life saving treatment they need will render them unable to ever get pregnant and the diseases they worry about have poor prognoses and are not easily treated with antibiotics.
It makes me furious that so many of these families like mine have faced multitudes of cancers FOR GENERATIONS. Mothers have lost children and husbands within months. Husbands have lost parents, siblings and children. I am deeply saddened in the lack of progress in battling this disease because it means the challenges will continue. Entire families demolished by cancer, And yet somehow we persist. Natural Selection is not survival in the fittest meaning the healthiest- it is the survival of those most capable of adapting. LFS mutants are the most capable folks you will ever meet. I think the same can be said for any family who faces hereditary syndromes. We face them head on and do what it takes to survive. Armed with the knowledge that life is not permanent and neither is health- we accept living with vigor. Rainbows are brighter, calm is appreciated, even storms are valued for what they bring. So I appreciate Angelina's choice and hope that this public declaration and awareness makes a very tough decision easier for someone out there. I call on others to be supportive of others decisions- they are most likely hard-won. You do not have to agree with the person or their decision- but know there is ALWAYS more than you see on the surface. Some decisions are life and death and necessary in the moment- some decisions have a greater element of choice and repercussions. All of it is a very careful balancing act of risk and quality of life that can only be determined by the person who faces it. When you have lived life watching those you love die- removal of an expendable body part or two- is not the hardest decision you ever have to face and most do it without a world of support or criticism. When faced with a syndrome that so many cancers have few or no treatment options- being able to proactively fend off the disease seems like a benefit. I do not mean to negate the momentousness of this process- but like Angelina's financial status and ability to procure the best healthcare- everything is relative. Some women would remove parts in an instant in an effort to be there for their children but have to face Institutional Review Boards and Insurance companies who ultimately hold the physical and financial possibilities of this control in their hands. Not only do you have to make the tough decision- you then publicly have to go round and round as to whether or not the medical community supports your decision.
I am over celebrities getting special badges of bravery and mountains of support for facing these diseases. Everyone should be so lucky to have this support. For every Angelina- there are hundreds of women out there who have gone through this. None of them did it for the publicity. I applaud those who use their celebrity and wealth to further research, quality of life and treatment for these diseases. I hope this is where she is headed with her publicity. Many of us fight day in and day out for these causes as well as raise our own children, cook our own meals, do our laundry and drive ourselves to and from treatment. Many can not pursue dreams or careers because of the disease and the need to care for multiple family members fighting cancer or another debilitating syndrome. That or we have really awesome neighbors who have yet to get sick of us and move to a different continent. As for my remaining tata- I think about it in the wee hours of the morning- the only minutes I get that are not dedicated to other necessary deeds. I think about the long laundry list of scans I should be undertaking to "proactively" screen for the myriad of cancers that could be growing in my body and I feel the weight of a hereditary cancer syndrome. I start to feel really down and sad. Then I realize- non of us would be where we are without the battles we face. There is a grand design- and we aren't meant to know it- part of the journey is figuring it out. Part of the journey is meeting these wonderful mutants along the way who are so delightfully snarky and different that it makes me proud to be one. It's knowing an amazing group of women who make me want to be better and do more and embrace and seize the positive when we can't control the negative. It's finding where you fit and understanding in a world of controversy. Ultimately it's about taking it a day at a time and knowing where you are and what you need to survive- and that connects us back to the rest of the world who are facing the same issue.
BRCA is serious. It is a huge increased risk of breast and ovarian cancers. That mutation has monumentally shaped the breast cancer game on so many levels. Ovarian cancer is a silent killer and so difficult to detect. Yet both of these organs can be removed. BRCA is very well understood- as is breast cancer- yet the treatments are still toxic and aggressive. It is one of MANY genetic mutations that predisposes women AND men to breast cancer. Cowden Syndrome, Peutz-Jeghers, Familial diffuse type gastric cancer and Li Fraumeni Syndrome to name a few. Certain Li Fraumeni Syndrome mutations(because although BRCA has 2- as of a 2003 published paper- Li Fraumeni Syndrome has over 250 known germline mutations.) A friend of mine says LFS is like BRCA on crack. I say it is the mother of all hereditary cancer syndromes.
Mostly it's just hard. It's hard not knowing which body part is going to go bad. For starters- the "Main" LFS cancers are brain, breast, sarcoma and adrenal. I know for sure if you remove a certain one of those prophylactically- you will have an explanation for most of what goes on in politics. The spectrum of cancers a LFS mutant can achieve is not limited or excluded to these- these are the ones that are well documented in certain families. These are the types of tumors that make docs wonder if a person has a family cancer syndrome. The mutation makes our cells unable to suppress tumors and in some instances- that broken mutation actually makes cancer cells angrier. One study boldly states that women with a certain LFS mutation have 100% chance of developing cancer by age 85(men have a 73% chance risk). The overall risk of women with LFS developing cancer by age 40 is 50% and both these percentages are so high because of the breast cancer incidence. Those of us with LFS know more young ladies in the 20-25 range who have battled the disease than we'd like. Ask them how they feel about prophylactic surgery. I feel fortunate that I was in my 30's, married to an amazing man who loves me as much as a uniboober as he did before(- probably more )and that I had the opportunity to have and breast feed my children. I know women who faced breast cancer in their early 20's- the physical and emotional scars are debilitating. The long term effects are painful. In a society where so much hinges on physical beauty - can you imagine embarking on the dating scene with a roadmap of scars for a chest and a genetic condition that all but guarantees you will be further damaged by 40 and really flipping grateful to be alive after 60? Most young women worry about pregnancy and disease- young LFS women are no different- they worry that the life saving treatment they need will render them unable to ever get pregnant and the diseases they worry about have poor prognoses and are not easily treated with antibiotics.
It makes me furious that so many of these families like mine have faced multitudes of cancers FOR GENERATIONS. Mothers have lost children and husbands within months. Husbands have lost parents, siblings and children. I am deeply saddened in the lack of progress in battling this disease because it means the challenges will continue. Entire families demolished by cancer, And yet somehow we persist. Natural Selection is not survival in the fittest meaning the healthiest- it is the survival of those most capable of adapting. LFS mutants are the most capable folks you will ever meet. I think the same can be said for any family who faces hereditary syndromes. We face them head on and do what it takes to survive. Armed with the knowledge that life is not permanent and neither is health- we accept living with vigor. Rainbows are brighter, calm is appreciated, even storms are valued for what they bring. So I appreciate Angelina's choice and hope that this public declaration and awareness makes a very tough decision easier for someone out there. I call on others to be supportive of others decisions- they are most likely hard-won. You do not have to agree with the person or their decision- but know there is ALWAYS more than you see on the surface. Some decisions are life and death and necessary in the moment- some decisions have a greater element of choice and repercussions. All of it is a very careful balancing act of risk and quality of life that can only be determined by the person who faces it. When you have lived life watching those you love die- removal of an expendable body part or two- is not the hardest decision you ever have to face and most do it without a world of support or criticism. When faced with a syndrome that so many cancers have few or no treatment options- being able to proactively fend off the disease seems like a benefit. I do not mean to negate the momentousness of this process- but like Angelina's financial status and ability to procure the best healthcare- everything is relative. Some women would remove parts in an instant in an effort to be there for their children but have to face Institutional Review Boards and Insurance companies who ultimately hold the physical and financial possibilities of this control in their hands. Not only do you have to make the tough decision- you then publicly have to go round and round as to whether or not the medical community supports your decision.
I am over celebrities getting special badges of bravery and mountains of support for facing these diseases. Everyone should be so lucky to have this support. For every Angelina- there are hundreds of women out there who have gone through this. None of them did it for the publicity. I applaud those who use their celebrity and wealth to further research, quality of life and treatment for these diseases. I hope this is where she is headed with her publicity. Many of us fight day in and day out for these causes as well as raise our own children, cook our own meals, do our laundry and drive ourselves to and from treatment. Many can not pursue dreams or careers because of the disease and the need to care for multiple family members fighting cancer or another debilitating syndrome. That or we have really awesome neighbors who have yet to get sick of us and move to a different continent. As for my remaining tata- I think about it in the wee hours of the morning- the only minutes I get that are not dedicated to other necessary deeds. I think about the long laundry list of scans I should be undertaking to "proactively" screen for the myriad of cancers that could be growing in my body and I feel the weight of a hereditary cancer syndrome. I start to feel really down and sad. Then I realize- non of us would be where we are without the battles we face. There is a grand design- and we aren't meant to know it- part of the journey is figuring it out. Part of the journey is meeting these wonderful mutants along the way who are so delightfully snarky and different that it makes me proud to be one. It's knowing an amazing group of women who make me want to be better and do more and embrace and seize the positive when we can't control the negative. It's finding where you fit and understanding in a world of controversy. Ultimately it's about taking it a day at a time and knowing where you are and what you need to survive- and that connects us back to the rest of the world who are facing the same issue.
Thursday, April 25, 2013
So far so good
It was 4 am. There were sheets of warm droplets coating the homestead. The man of the house prepared for a major check ride at work and I laid there quietly praying these drops would be a good omen for the day. Rain means traffic. Traffic means delay. Delay means stress. But it also means rainbows.
In a wicked turn of events- I called the afternoon before to confirm Lily's Tuesday scans. I didn't sleep the night before- scans do that to me- and they aren't even mine. I knew the next week was going to be long, the scanxiety bad. The nurse in the sedation center asks if we could come in that afternoon for a physical- then they could squeeze us in Wednesday. My gut reaction screams- do it. Well- I tell him- I already scheduled the physical at our clinic this afternoon. Great! He says- then we can do the scan on Wednesday! Well, um- my son has an appointment- there's no way my husband can get off work to help transport the cretins- I just didn't know if I could make it happen- was there a rush? Well no, he says- but Wednesday is wide open- she'd be the only kid up there. Ahh. That's not a bad turn of events- flexibility. I made some calls. My neighbor agrees to take the kids to school( Lily would have to be there by 7am) and pick up Phillip and bring him to Tripler for his 1pm appointment. I call endocrinology- because I am thinking half sedated- starving Lily at a 2.5 hour appointment - probably not a good idea. I ask- knowing there's no chance- if there are any openings before noon- say somewhere in the 9-11 window(precisely when Lily's in her scan). I explain the reasoning- she checks and says they will make it work. SO that's when the waterworks start. I hate asking for help and when people are so accomodating- it really gets me. I don't know what that says about the system(that everything is difficult) or me(I've learned that everything about the system is difficult) but I seriously am grateful when everything doesn't have to be SOOO painful for everyone. SO I call my neighbor back to let her know- she is off the hook for Phillip's transportation- I will just take him with me. He will miss the whole day of school- but this will save us like 3 hours travel time and parking nightmares in the long run.
We get to the hospital and go to admissions. We are nearly late due to the rain phenomenon and traffic. Admissions- after long chats and much searching- finally realizes that the policy changed(this is the 3rd time- so roughly ever other year they change this) and that Peds Sedation does their own checking in again. Great. We get her checked in and nuclear medicine is running behind. Meaning- they got stuck in traffic too. I keep Lily entertained- One of our favorite child life specialists stops by with 2 new Disney Barbie friends- Genie and Ursula- both huge hits with Lily monkey. I try to reach endocrinology- because I am going to get put on a list I really don't want to be on if I don't show up to this appointment. I leave messages. Ugh. I give the teenager money to run and get food- he actually brings said food back up to the sedation center- you seriously can't be eating that in front of your sister- she's NPO. Oh- sorry. Go to the family waiting room. Ok. The nurse offers to show him- Phillip says he knows where it is- the nurse shows him anyways. The kid just managed to go from floor 1 oceanside to floor 6 mountainside on his own- he may be dense but I think he can go out the hall and to the left and find a seat in the waiting room.
It's finally time to sedate Lily. I remind them that she's a tough stick- they know the game plan is to dart her first. Phillip peers into the treatment room as she gets wonky she looks right through him- calling his name. He laughs. She finally dozes off- she looks dead-he says. No that's not what dead looks like- I tell him- that's what passed out looks like. They wheel her out and she desats a few times- it's gonna be one of those days- they might have to put a tube in- oh well- better than the alternative. We head down to endocrinology armed with more apologies. It all worked out. I have Phillip present his findings after he studied his 14 pages of blood glucose and insulin values and the doc is impressed. Mind you, the appointment isn't any quicker- they are just long, thorough, tedious appointments- but it is fairly painless. By the time we get back upstairs- lily is awake and her head is bobbing around like a buoy. She begins her- I want to go home- I want to go home- chant. I'll take it over the I want to go home screaming. She starts to perk up- she keeps saying she doesn't want to drink. Phillip buys her a bottle of water. I have a huge headache- I take a giant gulp and encourage her to take a sip. She takes a sip. The anesthesiologist checks on her and asks if she's peed and is drinking. The tech- who saw Lily drink but not me nods. They examine the water bottle- Phillip looks at me with that smirk- he knows better- he knows what needs to be done to get us out of here and fortunately , Lily is still out of it so she doesn't say anything. Lily- who when asked when she had her last clears that morning says- 6:07. and I say 6. The tech laughed and says 6 it is. No, it was 6:07 says Lily. Oh well, no matter when the procedure was delayed an hour, so all was well.
We manage to squeak out of there- beat traffic and get back to school in time to pick up Kiera from Cheerleading. The phone starts ringing- the eerie sci-fi ringtone- it's the hospital. I can't bring myself to pick it up. The rain passed- it's beautiful and sunny- but no rainbow. The phone chimes- there is a voicemail. I take a deep breath- here goes nothing- it's her oncologist- everything looks fine- nothing of concern- so now we watch her hormone levels- she'll talk with her endocrinologist and we'll go from there. Now droplets are falling again- but it's ok - it's sunny out and I got my rainbow.
In a wicked turn of events- I called the afternoon before to confirm Lily's Tuesday scans. I didn't sleep the night before- scans do that to me- and they aren't even mine. I knew the next week was going to be long, the scanxiety bad. The nurse in the sedation center asks if we could come in that afternoon for a physical- then they could squeeze us in Wednesday. My gut reaction screams- do it. Well- I tell him- I already scheduled the physical at our clinic this afternoon. Great! He says- then we can do the scan on Wednesday! Well, um- my son has an appointment- there's no way my husband can get off work to help transport the cretins- I just didn't know if I could make it happen- was there a rush? Well no, he says- but Wednesday is wide open- she'd be the only kid up there. Ahh. That's not a bad turn of events- flexibility. I made some calls. My neighbor agrees to take the kids to school( Lily would have to be there by 7am) and pick up Phillip and bring him to Tripler for his 1pm appointment. I call endocrinology- because I am thinking half sedated- starving Lily at a 2.5 hour appointment - probably not a good idea. I ask- knowing there's no chance- if there are any openings before noon- say somewhere in the 9-11 window(precisely when Lily's in her scan). I explain the reasoning- she checks and says they will make it work. SO that's when the waterworks start. I hate asking for help and when people are so accomodating- it really gets me. I don't know what that says about the system(that everything is difficult) or me(I've learned that everything about the system is difficult) but I seriously am grateful when everything doesn't have to be SOOO painful for everyone. SO I call my neighbor back to let her know- she is off the hook for Phillip's transportation- I will just take him with me. He will miss the whole day of school- but this will save us like 3 hours travel time and parking nightmares in the long run.
We get to the hospital and go to admissions. We are nearly late due to the rain phenomenon and traffic. Admissions- after long chats and much searching- finally realizes that the policy changed(this is the 3rd time- so roughly ever other year they change this) and that Peds Sedation does their own checking in again. Great. We get her checked in and nuclear medicine is running behind. Meaning- they got stuck in traffic too. I keep Lily entertained- One of our favorite child life specialists stops by with 2 new Disney Barbie friends- Genie and Ursula- both huge hits with Lily monkey. I try to reach endocrinology- because I am going to get put on a list I really don't want to be on if I don't show up to this appointment. I leave messages. Ugh. I give the teenager money to run and get food- he actually brings said food back up to the sedation center- you seriously can't be eating that in front of your sister- she's NPO. Oh- sorry. Go to the family waiting room. Ok. The nurse offers to show him- Phillip says he knows where it is- the nurse shows him anyways. The kid just managed to go from floor 1 oceanside to floor 6 mountainside on his own- he may be dense but I think he can go out the hall and to the left and find a seat in the waiting room.
It's finally time to sedate Lily. I remind them that she's a tough stick- they know the game plan is to dart her first. Phillip peers into the treatment room as she gets wonky she looks right through him- calling his name. He laughs. She finally dozes off- she looks dead-he says. No that's not what dead looks like- I tell him- that's what passed out looks like. They wheel her out and she desats a few times- it's gonna be one of those days- they might have to put a tube in- oh well- better than the alternative. We head down to endocrinology armed with more apologies. It all worked out. I have Phillip present his findings after he studied his 14 pages of blood glucose and insulin values and the doc is impressed. Mind you, the appointment isn't any quicker- they are just long, thorough, tedious appointments- but it is fairly painless. By the time we get back upstairs- lily is awake and her head is bobbing around like a buoy. She begins her- I want to go home- I want to go home- chant. I'll take it over the I want to go home screaming. She starts to perk up- she keeps saying she doesn't want to drink. Phillip buys her a bottle of water. I have a huge headache- I take a giant gulp and encourage her to take a sip. She takes a sip. The anesthesiologist checks on her and asks if she's peed and is drinking. The tech- who saw Lily drink but not me nods. They examine the water bottle- Phillip looks at me with that smirk- he knows better- he knows what needs to be done to get us out of here and fortunately , Lily is still out of it so she doesn't say anything. Lily- who when asked when she had her last clears that morning says- 6:07. and I say 6. The tech laughed and says 6 it is. No, it was 6:07 says Lily. Oh well, no matter when the procedure was delayed an hour, so all was well.
We manage to squeak out of there- beat traffic and get back to school in time to pick up Kiera from Cheerleading. The phone starts ringing- the eerie sci-fi ringtone- it's the hospital. I can't bring myself to pick it up. The rain passed- it's beautiful and sunny- but no rainbow. The phone chimes- there is a voicemail. I take a deep breath- here goes nothing- it's her oncologist- everything looks fine- nothing of concern- so now we watch her hormone levels- she'll talk with her endocrinologist and we'll go from there. Now droplets are falling again- but it's ok - it's sunny out and I got my rainbow.
Tuesday, April 23, 2013
Scanxiety
I have purposely been avoiding scheduling Lily's PET scan. I admit it. It's no secret. It hasn't been for lack of trying- I tried a month ago to make the necessary calls and have not heard back- so I carry on. It's birthday season and I selfishly wanted to celebrate my girls' birthdays with them, without the looming doom of a scan hanging over our heads. Last year I went ahead with the flipping scans- and well- see where that got us. 3 surgeries- lots of headaches and appointments and yet somehow bought me another year. Yes it has been a year. Had I chosen to do chemo- this past year would have gone a lot differently. I am fairly happy with the way it went. After all- it was on my terms and relatively normal. SO to wrap up the year in the spectacular normal fashion- the plan was to celebrate 3 girls' birthdays in one month's time in addition to a week long TDY of the husband, multiple concerts, events, activities, etc. So as I approached the final stretch last week- squeezing in a mandatory last minute parent meeting for the 8th grader's Rites of Passage ceremony- when the phone keeps vibrating- I see Tripler is calling. I figure- NOW they want to schedule the PET scan- well they will just have to wait- I am finishing birthday season. After 7- I get home and check my messages- it's from our endocrinologist- I completely missed out 3 hour appointment for Lily and Phillip that day and she is worried something is wrong- she will call back tomorrow. I can't believe it completely fell off my radar. I know I should have picked up on it when I refilled Phillip's insulin last week and it was the last refill. I feel horrible and yet somehow relieved because I hadn't had 2 spare seconds this week- so had I remembered the appointment- I don't have any idea how I would have fit it in- trying to fit it in would have caused tons more stress- and so hopefully first thing in the morning- I could call and apologize profusely and reschedule. But the next morning was Kiera's track meet and it wasn't the most appropriate environment to call, so I waited. Kiera asked if I would sit with her and I did. Having a 13 year old really makes you appreciate when the 12 year old wants to be near you- I know these moments are fleeting and the days are numbered- so apologies would wait.
After the meet- we make a quick trip to walmart- possibly the 8th such trip in so many days- taking care of goodie bags and party items and presents. Tripler and Walmart usually fill me with the same sense of foreboding and ironically neither one gets beans in the way of cell signal- yet somehow I am in the center of walmart and my phone rings and it is Tripler. Ugh- so I answer , it's our endocrinologist and I make my apologies- she doesn't seem too angry, just worried. She really needs to see Phillip- can we squeeze him in next week and try to get Lily in after her PET scan. When is her PET scan by the way? I recount my inability to get a hold of a human and a call to one of my insiders revealed the order wasn't in the system- she says she will take care of it. SO there that is again looming. It also adds a few hours of collecting Phillip's blood sugar numbers and downloading pump data and that kind of fun to the weekend. It is a small price to pay to keep him healthy.
The weekend passes in a blur and like that, Birthday Season reaches it's conclusion. I am relieved and exhausted. Monday is to be the day of cleaning and catching up on housework- but a last minute email from school shows a need for parent help in Lily's grade. Plans change- I spend 2 hours helping 2nd graders- in the pouring rain- scrub and gut gourds that will become ipus for their May Day celebration. My hand begins to swell- whether due to rain or overuse- who knows- one of the minor side effects of having a few lymphnodes removed but I know I have to take a break before it gets worse. This upsets me- I know I have to take care of my body and listen to it's limitations- but I don't like being limited. SO I head home and crunch the diabetic's numbers. He's doing pretty well- he's at least taking his blood sugars more regularly. We still have some highs and some lows and tighter control can be achieved- I can now predict how our doctors visits will go. I print out the 14 pages of blood glucose numbers and insulin doses and highlight the highs, lows and any areas of concern. When the boy gets home- I will go over the numbers with him and we will discuss areas that we can do better. It's time to get the girls. It was a day "off " for Phil- which meant he worked from 8-2. I get a message from him and a text. Hmm either he's going to be late(likely) or something is up(likelier). It turns out he got a message to schedule Lily's PET scan. I get off the phone and call to schedule while I am waiting for Bella to get out of Hula. Kiera and Lily jump in the car. I look at the clock- 3:30- only a half hour to make the call- probably not a good idea to wait til tomorrow. They have an opening on Wednesday. THIS Wednesday? They had a cancellation and can squeeze us in. The catch- I'd have to get Lily a physical by 8 am on Wednesday. I laugh- it's 3:35 on Monday- I won't even be able to get a hold of a human probably by 8 am on Wednesday not to mention having to reschedule Phillip's appointment or taking him to Lily's scan and dragging sedated Lily to his appointment- uncle- what's the next available? Next Tuesday. Ok- let's do that. I call to make the physical- it's now 3:55- I don't expect to get a human 5 minutes before clinic closes- but I do. She can squeeze Lily in tomorrow at 3:40. Ironically we would have been able to do the Wednesday slot- but back to aforementioned scheduling conflicts. It is tempting to try and knock 2 birds out with one trip. Especially since I know the next week will be filled with scanxiety- the moments of panic as the fear of potential catastrophe might be revealed. But I choose to spread the stressful wealth over multiple days.
When I get home- Phil is there working on his May schedule bids for days off. I am just happy he has the potential for days off again and a little schedule flexibility. May is a busy month of kids activities. I tell him the scan plan and he gives me that look. You know I am off the island that day? I look at the calendar- the 30th is empty- if it's not on the calendar- it doesn't exist. I write in 10am PET. I shrug. We both know we have a horrible track record with scans, injuries, etc when he is gone. The doom cloud settles over my head. It is what it is. Do you want me to stay? I am trapped between reality and superstition. Common sense says his presence will not change the outcome of the scans- but superstition overrules that with experiential data. I can handle it- the only other option is Wednesday- which he has a check ride on so technically he is off the island then too- or putting it off until June. It's time- this journey started in November with strange stomachaches. It's now been months since the MRIs. As I tell everyone else when facing scanxiety- it could reveal something bad- by not scanning- it doesn't make the bad go away. It could also reveal nothing and then you have a couple of months until you have to deal with scanxiety again. So fingers and toes, knees and elbows crossed that insomnia and scanxiety are the worst things we face in the next week.
After the meet- we make a quick trip to walmart- possibly the 8th such trip in so many days- taking care of goodie bags and party items and presents. Tripler and Walmart usually fill me with the same sense of foreboding and ironically neither one gets beans in the way of cell signal- yet somehow I am in the center of walmart and my phone rings and it is Tripler. Ugh- so I answer , it's our endocrinologist and I make my apologies- she doesn't seem too angry, just worried. She really needs to see Phillip- can we squeeze him in next week and try to get Lily in after her PET scan. When is her PET scan by the way? I recount my inability to get a hold of a human and a call to one of my insiders revealed the order wasn't in the system- she says she will take care of it. SO there that is again looming. It also adds a few hours of collecting Phillip's blood sugar numbers and downloading pump data and that kind of fun to the weekend. It is a small price to pay to keep him healthy.
The weekend passes in a blur and like that, Birthday Season reaches it's conclusion. I am relieved and exhausted. Monday is to be the day of cleaning and catching up on housework- but a last minute email from school shows a need for parent help in Lily's grade. Plans change- I spend 2 hours helping 2nd graders- in the pouring rain- scrub and gut gourds that will become ipus for their May Day celebration. My hand begins to swell- whether due to rain or overuse- who knows- one of the minor side effects of having a few lymphnodes removed but I know I have to take a break before it gets worse. This upsets me- I know I have to take care of my body and listen to it's limitations- but I don't like being limited. SO I head home and crunch the diabetic's numbers. He's doing pretty well- he's at least taking his blood sugars more regularly. We still have some highs and some lows and tighter control can be achieved- I can now predict how our doctors visits will go. I print out the 14 pages of blood glucose numbers and insulin doses and highlight the highs, lows and any areas of concern. When the boy gets home- I will go over the numbers with him and we will discuss areas that we can do better. It's time to get the girls. It was a day "off " for Phil- which meant he worked from 8-2. I get a message from him and a text. Hmm either he's going to be late(likely) or something is up(likelier). It turns out he got a message to schedule Lily's PET scan. I get off the phone and call to schedule while I am waiting for Bella to get out of Hula. Kiera and Lily jump in the car. I look at the clock- 3:30- only a half hour to make the call- probably not a good idea to wait til tomorrow. They have an opening on Wednesday. THIS Wednesday? They had a cancellation and can squeeze us in. The catch- I'd have to get Lily a physical by 8 am on Wednesday. I laugh- it's 3:35 on Monday- I won't even be able to get a hold of a human probably by 8 am on Wednesday not to mention having to reschedule Phillip's appointment or taking him to Lily's scan and dragging sedated Lily to his appointment- uncle- what's the next available? Next Tuesday. Ok- let's do that. I call to make the physical- it's now 3:55- I don't expect to get a human 5 minutes before clinic closes- but I do. She can squeeze Lily in tomorrow at 3:40. Ironically we would have been able to do the Wednesday slot- but back to aforementioned scheduling conflicts. It is tempting to try and knock 2 birds out with one trip. Especially since I know the next week will be filled with scanxiety- the moments of panic as the fear of potential catastrophe might be revealed. But I choose to spread the stressful wealth over multiple days.
When I get home- Phil is there working on his May schedule bids for days off. I am just happy he has the potential for days off again and a little schedule flexibility. May is a busy month of kids activities. I tell him the scan plan and he gives me that look. You know I am off the island that day? I look at the calendar- the 30th is empty- if it's not on the calendar- it doesn't exist. I write in 10am PET. I shrug. We both know we have a horrible track record with scans, injuries, etc when he is gone. The doom cloud settles over my head. It is what it is. Do you want me to stay? I am trapped between reality and superstition. Common sense says his presence will not change the outcome of the scans- but superstition overrules that with experiential data. I can handle it- the only other option is Wednesday- which he has a check ride on so technically he is off the island then too- or putting it off until June. It's time- this journey started in November with strange stomachaches. It's now been months since the MRIs. As I tell everyone else when facing scanxiety- it could reveal something bad- by not scanning- it doesn't make the bad go away. It could also reveal nothing and then you have a couple of months until you have to deal with scanxiety again. So fingers and toes, knees and elbows crossed that insomnia and scanxiety are the worst things we face in the next week.
Monday, April 1, 2013
Springing into Action
I love love love Spring. It gets a little overwhelming at times with all the birthdays and Easter. My birthday marks the time of year I remind myself to get my annual checkups. No wonder I dread my birthday- yeesh. I don't dread it because I am a year older- I have long cherished every year I get to celebrate. This year marks the first year I have visible gray hairs. Every so often Phil and I compare- he's winning by the way! It just compels him to be more dilligent on shaving his head- me- I pluck the rogue ones that draw attention to themselves- but mostly I'm not bothered-yet. To me this is a right of passage that so many in my family- so many with Li Fraumeni Syndrome are robbed of. I am not in a hurry to cover them. Like the wrinkles that crinkle at my eyes and catch my tears from time to time- I have earned each and every one of those wirey sparkly bits of tinsel. And just as with decorating the Christmas tree- too much tinsel is a bad thing- and when that time comes I will proudly cover my badges of courage just as I have learned to cover the emotional and physical scars of this journey.
It was a year ago that I made an appointment to have a lump on my arm checked out. A little hard lump that I noticed one day while driving. It became a compulsion- every time I got in the car- I would feel it. Never bigger, it moved slightly when prodded. But my gut said- it has to go, get it out. It made the other lump- the one that would come and go with the monthly moons seem a little more ominous. Common sense tells you to deal with it- ignoring it will not make it go away. Yet in your heart- you have to be ready to face the battle ahead and each time you go to battle- a little piece of you is chipped away- sometimes emotionally- sometimes physically - either way- it's a little tougher each time. It doesn't get easier because you have done it before. It's not like riding a bike or something you can practice at and get good at. There are no Olympic medals for fighting cancer- although if you know of any celebrities who have gotten cancer- you know all cancer warriors are not equal and there are very different battlefields. Such is the battle of life.
We had a birthday party on Saturday. A last minute invitation from an old friend. The lateness completely unintentional and a testimony to our hectic schedules- as it was a beautiful hand delivered message in a bottle invitation for a mermaid themed beach party. How could I say no to that- despite Saturday being Phil's only day off- the only chance to paint eggs as a family and have Easter dinner- since he was working Easter night? So I slightly adjust the day's plans to include a couple hours at the party- managing beforehand to paint Kiera's nails which I had been promising to do for a week with cute Easter patterns and in 24 hours the theme would be late. We arrive late to the party- and just in time for me to escort 5 giddy girls down to the water. I nod to the other party moms and am somewhat grateful to not have to engage in chit chat- it's not something I'm good at. I notice the birthday girl's mom pulls me over to introduce me to another mom who is sitting by herself at a table. I smile- but the girls are making a beeline for the waves- I excuse myself. The girls are soon cold and hungry and we make our way back to the party. I get my girls plates, grab a quick bite and start the potty trips- oh the life of a mom! Before I know it- Lily is laying on the picnic table claiming to be dying of stomach pains. Bathroom trip #85. Including me and a bathroom maintenance guy having a pretty descriptive discourse as to the nature of mess he would be finding if we were not expressly allowed admittance to the lavatory. He politely explained it would be 5 minutes. Lily screaming that she had to poop helped.
Upon returning to the party- party mom had noted the rather volatile nature of my middle daughter's temperament and proceeded with the cupcake ceremony- always an event that can soothe the most grumpy of beast. It was time for us to leave- I told our host when we arrived that our departure would be premature and explained why- there was a pricey non cured vegetarian fed ham awaiting my attention. She pulls me aside and drops the bomb- I know you have to leave- but the mom I introduced you to earlier- um well - I think you have a lot in common and would you mind talking to her for a few minutes? I hesitate. A few minutes won't hurt- I can get the ham on the table by 7- it's not a school night. She continues- her older daughter has leukemia and I think you could really help her. It's like one of those movie moment realizations- I look over and wonder how I missed it- a woman sitting alone- closest to where her younger child is playing with the other girls- what could be construed as shyness or helicopter parenting is just plain old sheer exhaustion. In that moment I feel horrible that I missed it- that I have put up my barriers to others struggles because I have been so focused on our own. Part of me wants to run away. Part of me knows the universe throws these landmines in our path for a reason. Sometimes you have to pull the scab off. So I pulled. In the few first moments I could not even get words out- I became that person- the person that came up to me time and time again after Lily was diagnosed with tears and I ended up comforting them. A dad standing nearby made a beeline for the barbecue. Yet you are never as strong as you are when you are helping your child battle for their life and I know this now. I also pulled myself together and explained- choking up- I heard her daughter had leukemia- she nodded preparing herself to hear what everyone else says- they are so sorry- is there anything I can do- but instead I pointed to Lily. She's my survivor. She didn't have leukemia- but she had and exceptionally rare cancer with a very poor prognosis. This is the hardest time in your life- you will never be as exhausted or as strong as you are now and you will get through this. You will find strength in places your never expected and people will surprise the hell out of you. Ask for help. Sleep when you can and don't worry about the little things- when you get through this- they will be there and you can deal with it then. By the time I stopped talking - I realized we were gripping each others hands-me unsure of who was helping who more. We talked for over an hour. We laughed about things that would mortify those who had not been through the journey. And so the scab bled- and still bleeds. But sometimes you are given an opportunity that reminds you of your purpose. I had been feeling very low about where I am at- where I am going. Even Phil finds relatablity on Sportscenter- Stewart Scott said "The worst part about cancer is that it robs you of the ability to make plans". And we laughed. You can make plans- and just watch the show as they implode- sometimes it goes down like a tube of mentos in diet coke. Ahhh plans.
When you are living cancer- you have support coming out of the woodwork. You are on autopilot- "you don't have time to think up there- you think- you die". And you spend the recovery years trying to pick up the pieces- putting them together- but the moving forward is tricky. You are terrified to make plans that will get annihilated by cancer yet you are surrounded by the urgency to get as much accomplished as humanly possible before time on the clock runs out. All the while the clock it taunting you- reminding you that you haven't accomplished things while daring you to make plans so you can face the ultimate disappointment. And so through it- you pretend to be normal and you get immersed in normal things and you pretend to forget about the parts of your life that have left the biggest scars. And under that scab was a great big scar- but spring is a time for new beginnings. And that scar was once an open wound and it healed- and now it's time to keep on keeping on and if we are lucky we will be able to look back on these times and have lots more scars to compare- because although those aren't the only remnants of the battle- they are the ones that bring us together and remind us what we are fighting for.
It was a year ago that I made an appointment to have a lump on my arm checked out. A little hard lump that I noticed one day while driving. It became a compulsion- every time I got in the car- I would feel it. Never bigger, it moved slightly when prodded. But my gut said- it has to go, get it out. It made the other lump- the one that would come and go with the monthly moons seem a little more ominous. Common sense tells you to deal with it- ignoring it will not make it go away. Yet in your heart- you have to be ready to face the battle ahead and each time you go to battle- a little piece of you is chipped away- sometimes emotionally- sometimes physically - either way- it's a little tougher each time. It doesn't get easier because you have done it before. It's not like riding a bike or something you can practice at and get good at. There are no Olympic medals for fighting cancer- although if you know of any celebrities who have gotten cancer- you know all cancer warriors are not equal and there are very different battlefields. Such is the battle of life.
We had a birthday party on Saturday. A last minute invitation from an old friend. The lateness completely unintentional and a testimony to our hectic schedules- as it was a beautiful hand delivered message in a bottle invitation for a mermaid themed beach party. How could I say no to that- despite Saturday being Phil's only day off- the only chance to paint eggs as a family and have Easter dinner- since he was working Easter night? So I slightly adjust the day's plans to include a couple hours at the party- managing beforehand to paint Kiera's nails which I had been promising to do for a week with cute Easter patterns and in 24 hours the theme would be late. We arrive late to the party- and just in time for me to escort 5 giddy girls down to the water. I nod to the other party moms and am somewhat grateful to not have to engage in chit chat- it's not something I'm good at. I notice the birthday girl's mom pulls me over to introduce me to another mom who is sitting by herself at a table. I smile- but the girls are making a beeline for the waves- I excuse myself. The girls are soon cold and hungry and we make our way back to the party. I get my girls plates, grab a quick bite and start the potty trips- oh the life of a mom! Before I know it- Lily is laying on the picnic table claiming to be dying of stomach pains. Bathroom trip #85. Including me and a bathroom maintenance guy having a pretty descriptive discourse as to the nature of mess he would be finding if we were not expressly allowed admittance to the lavatory. He politely explained it would be 5 minutes. Lily screaming that she had to poop helped.
Upon returning to the party- party mom had noted the rather volatile nature of my middle daughter's temperament and proceeded with the cupcake ceremony- always an event that can soothe the most grumpy of beast. It was time for us to leave- I told our host when we arrived that our departure would be premature and explained why- there was a pricey non cured vegetarian fed ham awaiting my attention. She pulls me aside and drops the bomb- I know you have to leave- but the mom I introduced you to earlier- um well - I think you have a lot in common and would you mind talking to her for a few minutes? I hesitate. A few minutes won't hurt- I can get the ham on the table by 7- it's not a school night. She continues- her older daughter has leukemia and I think you could really help her. It's like one of those movie moment realizations- I look over and wonder how I missed it- a woman sitting alone- closest to where her younger child is playing with the other girls- what could be construed as shyness or helicopter parenting is just plain old sheer exhaustion. In that moment I feel horrible that I missed it- that I have put up my barriers to others struggles because I have been so focused on our own. Part of me wants to run away. Part of me knows the universe throws these landmines in our path for a reason. Sometimes you have to pull the scab off. So I pulled. In the few first moments I could not even get words out- I became that person- the person that came up to me time and time again after Lily was diagnosed with tears and I ended up comforting them. A dad standing nearby made a beeline for the barbecue. Yet you are never as strong as you are when you are helping your child battle for their life and I know this now. I also pulled myself together and explained- choking up- I heard her daughter had leukemia- she nodded preparing herself to hear what everyone else says- they are so sorry- is there anything I can do- but instead I pointed to Lily. She's my survivor. She didn't have leukemia- but she had and exceptionally rare cancer with a very poor prognosis. This is the hardest time in your life- you will never be as exhausted or as strong as you are now and you will get through this. You will find strength in places your never expected and people will surprise the hell out of you. Ask for help. Sleep when you can and don't worry about the little things- when you get through this- they will be there and you can deal with it then. By the time I stopped talking - I realized we were gripping each others hands-me unsure of who was helping who more. We talked for over an hour. We laughed about things that would mortify those who had not been through the journey. And so the scab bled- and still bleeds. But sometimes you are given an opportunity that reminds you of your purpose. I had been feeling very low about where I am at- where I am going. Even Phil finds relatablity on Sportscenter- Stewart Scott said "The worst part about cancer is that it robs you of the ability to make plans". And we laughed. You can make plans- and just watch the show as they implode- sometimes it goes down like a tube of mentos in diet coke. Ahhh plans.
When you are living cancer- you have support coming out of the woodwork. You are on autopilot- "you don't have time to think up there- you think- you die". And you spend the recovery years trying to pick up the pieces- putting them together- but the moving forward is tricky. You are terrified to make plans that will get annihilated by cancer yet you are surrounded by the urgency to get as much accomplished as humanly possible before time on the clock runs out. All the while the clock it taunting you- reminding you that you haven't accomplished things while daring you to make plans so you can face the ultimate disappointment. And so through it- you pretend to be normal and you get immersed in normal things and you pretend to forget about the parts of your life that have left the biggest scars. And under that scab was a great big scar- but spring is a time for new beginnings. And that scar was once an open wound and it healed- and now it's time to keep on keeping on and if we are lucky we will be able to look back on these times and have lots more scars to compare- because although those aren't the only remnants of the battle- they are the ones that bring us together and remind us what we are fighting for.
Subscribe to:
Posts (Atom)
Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)