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.

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.

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.

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. 

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.

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.

Our Friend NED, we want him to stay for a long visit.

I finally tracked down Lily's MRI results. NED is our friend. We love NED. NED is No Evidence of Disease. Another new favorite phrase is "nothing concerning".  Lily's brain looks normal. YAY!  This is a big sigh. Despite several professional opinions- that adrenal cancers don't usually metastacize to the brain- whenever I hear "don't usually" I file it away for a rainy day diagnosis- since "don't usually" usually translates into something that might cross our path. The other big issue is my family history of brain tumors. With Li Fraumeni Syndrome- once you have cancer- the chances of getting a new, rare, unrelated cancer increases- unless of course that cancer is a brain tumor and well the outcome isn't so hot. Since Lily is so young- we are watchful. It's a tricky game. We now move on to the trickiest of parts- weighing the benefits of finding what, IF something is brewing using scans that could potentially CAUSE more damage in the long term with waiting and seeing and possibly missing a chance to nip it in the bud. There are no right answers. Most days I want to pretend everything is normal and try to convince myself that things are fine, and then Lily has an episode and I am immediately transported to 4.5 years ago to a place with tantrums and strange sensory issues and the mommy sense, much more acute than spidey sense- is ringing so loud in my ears I can hardly think.

I feel so lucky to have people I can count on in Tripler. We have several angels that look out for us. I HATE calling in favors and asking people to do things for me- but it's so much easier to do for Lily.  I often rant on and on about our endocrinology visits- their length- their "thoroughness" and how most of the time it's too much and feels tedious. I have been asked why I put up with it. Well in times like these- that is EXACTLY the person I want in my corner fighting for Lily. We have multiple issues we are playing with- we have potential oncologic issues, but we also have some major endocrine issues and they are inextricably linked.  Specialized medicine can be really useful, especially with rare diseases such as Adrenal Insufficiency or Li Fraumeni Syndrome- diseases that professionals may or may not see during their career- it's a huge game of chance. But these are precisely times that there needs to be a continuity and more often than not, this continuity is me. It is also with regret that I inform you- my memory is not what it used to be. In the early morning hours, I convince myself it is old age as I am rapidly approaching 37- which is elderly for the LFS set. Other times I chalk it up to the beginnings of my own brain tumor and go on find my happy place. I felt a week was plenty to stew on MRI results. I sent emails, I made calls- not getting through, finally getting through to a nurse who had not seen Lily's results but assured me I would have gotten a call if there was something amiss. If you have ever been on the receiving end of a "nobody called you?" after a diagnosis- or been inadvertantly revealed a new piece of information in the medical arena- you KNOW that for every 2- no calls could be good calls- is the call that should have been made. When my next step hinges on test results- I'm invested in the timeliness of it.


I call in to our endocrinology nurse. She's been with us from the beginning- back in the day plying the chemo shadow of a Lily in a pull up and purple robe with as much candy as she could carry. At a time in our lives that I wished she would eat the darn candy as opposed to letting it coagulate in her robe pocket. The pharmacy couldn't refill a couple of meds, so this was my opportunity to call in a favor. I mention I hadn't heard Lily's MRI results yet and was told they weren't in. I would feel better if I knew what they were. She asks if I want her to put in a request for the doc to call me. No, I already emailed him- he knows I am waiting. I know he's busy- and probably with kiddos in much more dire need- but this part is taxing. I hear her typing. "Normal" she says."I'm sure everything looks normal, No Evidence of Disease. " I sigh. It helps to hear. Sometimes you just need to hear it. Now we move on to the next issue. I hope NED stays. If there is something to see, PET CT will see it. Now on to scheduling that hot mess.

Brainiac

After battling traffic and parking related to Tripler way too many times in the past month- I was relieved to have a night appointment. Since the MRI is way overscheduled- always, they've started night appointments. It's kinda like Night Court- but hospital style.  Of course you run the risk of getting bumped by emergency scans- but that happens during the day too.  Add the bonus of Lily not missing more school than necessary- this could be great. Yet as soon as she saw MRI on the calendar- she starts to panic. Is it going to be a long time? Am I going to need an IV? What are they going to see? What if they see a tumor?

None of these are questions one would expect from a 7 year old. But as we know- Lily has never been your average kid. My biggest worry was that they would be able to get good images through the fabuliciousness of hair on her noggin. Between the past 4 ultrasounds, MRI, CTs, etc- it has been difficult to get any of us in for hair maintenance. God Love Ponytail holders and headbands.

Ultimately, Lily's biggest worries are 1) that she will have to talk to the MRI tech and 2) they will see what she is thinking.  I love that this is how she views the world and partly wonder if her coping mechanism is just screaming nasty words at people in her head as she seems to be overly concerned with people knowing too much about what is going on up there. I explain that the techs will be nice and they have a job to do so when they give instructions- it's just to get the MRI done as fast as possible and that means holding really still- statue still? Yes- statue still. I ask her what the worst possible thing the tech could say to her is? I just don't want them to yell at me. They will absolutely NOT yell at you- they will tell you to hold still- but if you need something you have to tell them. How will they hear me? There's a microphone. Can they see me? Yep and you will have a bulb to squeeze. Ok. And they won't see the words in my head? No, they will only see your brain. (fingers crossed).

We go to check in and Miss Shy- looks at the tech and says- can I bring Pooh in with me? He looks at me- I just shrug- really it's your call- I'm pretty sure he doesn't have any metal- the poor old bear is hanging on by a thread.  He asks if he can take Pooh and make sure. Lily's eyes are wide- as he disappears with the bear- Pooh's gonna have an MRI? Pooh passes the test and Lily is all smiles. We have to wait while they get the machine ready  and she whispers to me pointing at a guy in the waiting area- that guys eyes are red. When Lily is nervous- she talks- a lot. And she says hugely inappropriate things- loudly- like- which one is your fake boob again- while reaching out to cop a feel. Yeah this is my life.  I tell her he's probably tired and not to stare. I look up to smile apologetically and the guys eyes are No KIDDING- Twilight caliber- creepalicious RED. I can't help but laugh. The freaks come out at night- and although you don't expect it as much in the Army hospital-really military folks are a cross section of society and have their own idiosyncrasies. He has a big black leather purse at his feet and falling out of it is a belt with studs on it- the big sharp, pokey kind.  In my mind are all kinds of images and scenarios of what brought him and his lovely lady vamp here, at 8 Oclock on a Tuesday. A few minutes later- she appears. Huge hickey and all. I try not to laugh and am grateful for the distraction.

Really everything else is irrelevant because I called ahead and asked if we could possibly use the goggles and at a minimum headphones with music. We brought a movie and she was good to go. The biggest glitch was that I told her they would put the IV in first- and they put the cream on first- so they would inject contrast in the middle of the scan- Lily doesn't do well with change- but we talked through it and decided that cream was better and she would be brave and watch the movie. I didn't want to offer to sit in the MRI suite with her- since Lily is all about precedents- I want to see if she can do this on her own and she is doing great and hasn't asked me to- I know she can, she's already absorbed in her movie. I retreat to the waiting room. The guests have rotated and there are 2 women who also talk loud when nervous- and obnoxiously about who they will and won't have sex with. SO glad Lily is in the loud room with headphones on and that I have mine in my bag- oh GOOOD-NESSS.  Lady 2 takes a picture of Lady 1 in her scrubs- lady is a stretch- and promptly sends it to her husband. Lady's 2's not Lady 1's husband . Weirdsies. I turn my music louder. Before I know it, it's been 45 minutes,  the door opens and out comes Lily- goggle imprints on her face and asking for a snack. That's my monkey. She shows me her "poke"- I didn't feel it at all!  Part of me wonders why we haven't done it this way all along. I'm sure it's because this started when she was 3 and most times her scans last 2 hours. BUT- with the right movie choice- we may be able to do this.

I expect to hear results from the brain scan tomorrow, maybe tonight if I'm lucky. Next up will be the PET-CT scan. This is the one that has the most risk and possibly the best payout of information. Kind of like all things in life.  The risk is the amount of radiation. First  of all she's young which means her cells are a lot more active which means they can get damaged pretty easily from radiation. Secondly she's got this pesky Li Fraumeni Syndrome- which includes what is called "radiation sensitivity". A friend and I were just joking about this sterile inocuous way of putting it. Our cells don't repair damage like they should- radiation causes damage- normal people's cells fix it- ours get overloaded and go rogue(cancer). This scan involves not only the radiation from the CT(which is around 300-500 chest Xrays worth) but a radioactive glucose is injected beforehand. The theory is that cancer loves sugar- it eats up the radioactive glucose(remembering that helps me avoid that extra brownie..)- whatever lights up on the scan is a potential malignancy. The down side is that kids are growing- so they have a lot of normal cells that are using a lot of sugar too, so you can get false positives. The up side is that the earlier you catch cancer- without seeing symptoms- the better chance at removal and survival. SO here we are- still hoping to see nothing- but not feeling any better about the nothingness. Needle in a haystack- unless you plan on sewing- do you really need to go looking? Ah the conundrums.

Making the lists

After a dozen or so scans- I finally got smart and didn't tell Lily about it until the last minute. I actually didn't tell her about it at all- she saw it on the calendar. Lily is a stress monkey. Whether it's a side effect of the steroids or just her personality- she tends toward the hyper stress mode. So the other day she spots MRI written on the calendar and immediately asks- WHO is having an MRI? Um- you are. Yeah, you kind of give up on Mother of the Year when you genetically predispose your children to the jackpot of cancer disorders. SO she shakes her head up and down, processing the news- Ok she says- what time is it at?  Well that should be obvious, but I write things in code- 9 clears 930 admit- she can have clears until 9- She is NPO but that starts in the middle of the night.  She looks at me- oh yeah she asked me a question- It's at 11, we have to get there around 9.  DO I have to be NPO until then? She couldn't tell you what 8x4 is- but she will explain what exactly NPO means. It's Nothing Phucking Orally. Ok she doesn't know that- she just knows it's not phun to not eat before scans. It's also not fun for me because I generally can't eat out of sympathetic guilt and by about noon- I'm a bundle of hungry nerves. Especially since last time- it took them 4 or 5 tries before they got her IV started. Numbing cream or no- that's not something a 7 year old can forget. I don't expect her to, so I lay down the law for the tech. He seems new- blanches a little and next thing I know- one of the other nurses is taking over. I didn't think I was mean- I told him he would get 1 shot to get her IV in and 1 dart- it was his choice if he wanted to dart her before or after that try- I recommended before.He refused to come near us after that. God I remember the days when I would let the newbies practice on me. Now I point to the vein. I don't let people practice on my kids. Period. So she gets the dart- it takes the edge off and a tech who I don't know but have seen around gets her IV in the first try. I make a mental note- he's on the good list. I see people all over Triple and many I can't remember where or how our paths crossed- but I do remember if it was positive or not. Sometimes when I am sitting around and waiting- I try really hard to place people- I swear some must have been in the room the day Lily was born- or in one of our many surgeries, but it's just a guessing game.


Lily was especially agitated after they put the IV in. Usually the dart calms her- but we have a different team- and one thing I've learned is that everyone has their own style and my memory sucks. No she doesn't like the gas- yes she does well on the dart- but don't ask me what specifically does into that magic little injection that makes everything all rosey. It obviously was not in it today. She cried. She panicked. It was a definite learning experience for the med student, resident and child life specialist in training and the momma who is trying to do all four jobs at once. The nurse assures everyone that it's normal. Lily normally gets emotional- right? Well before hand yes- but usually it's the waking up part that sucks- not this part. She kept chanting how she didn't feel normal, it didn't feel right. I know it's the meds and she won't remember this- but I will. Every last tear.  Her begging me to let her go to school- school is fun- this is not fun- I just want to go play- I just want to be normal-not this. Not this. I want daddy, daddy is supposed to be here. I Promise her that daddy will be here when she wakes up. Finally we are on the move and she continues sobbing in the hall and finally the anesthesiologist has mercy on us all and gives her some versed- the happy juice and she drifts away into happy land.

As they get her situated in the MRI- the nurse confirms how long the MRI will be to assure they have enough sedation on board. She says 30 min. I was under the impression it was going to be 2 hours. I am a little annoyed that I requested a Brain MRI and was told that this was the first step- we'd get to that when we needed to.  As a girl who comes from a long line of brain tumors- I don't make this request lightly. But I have to trust the docs. 

The waiting part sucks. I can't focus enough to actually read anything. I try to listen to music to drown the anxiety. I pace. I find a window down the hall that is radiating a little warmth. The sun is shining through clouds- bouncing off the pink stucco like a poorly timed sunset. Rainbows appear and dart behind clouds. I hear the metallic clink of the wheels of a gurney- it's Lily. She's snoring away.  We head back up to the sedation center to begin the wake up process. Phil manages to make it there from work before she wakes- lucky for all of us.  She wakes briefly declaring she has to pee. I am really glad Phil is there- it takes both of us to drag her 94 pounds of sack potatoes to the bathroom where she promptly proceeds to fall asleep on the toilet. I stick her hand in the sink and start the water- nothing. I shake her and tell her to go. She says she's thinking, she thinks better with her eyes closed. I guess it could be worse.

She finally is coming out of it and the oncologist comes in. The dread. Absolute freaking dread. He plays with her for a minute and I want to shake him and scream- just tell us. The abdomen and pelvis were clear. Seemingly good news- I feel bad that I am not relieved. I want to believe that things are not about to get worse. I want to believe. But...oh there it is. She had a pretty full bladder so we want to do an ultrasound to check that out.  I guess that makes sense. And then we will do a PET and a brain MRI. The order is not set in stone- we will deal with each and cancel or add as we find or don't find information out. I don't like this game. This game sucks.  Can we give this game to the hypochondriacal person?  So we are going to do another ultrasound, then possibly a brain MRI- without sedation- which I requested we do today while sedated and then PET or maybe PET if the ultrasound shows something and then maybe brain. So the list of tests starts. I know there is no quick one size fits all- but this seems neither efficient or direct. It seems like we are stabbing in the dark. This is the big crappy part. IF you catch cancer early- you can potentially "cure" it. Her bloodwork implies something is brewing. IF you wait and see- it might spread or be too big to get. I know I have to be patient. I know that I have to have faith. It's just really tough to go looking for something you don't want to find. Despite the fact that I did all the research 4.5 years ago- I want to believe that Lily will break the mold-defy the poor prognosis- obliterate the major risk of recurrence.  I try to have patience and remember we can get through anything if we stay positive and stick together. I hug her a little tighter, a little more often. I hug all of them tighter and more often. I think they are getting a little annoyed- so I guess I am doing it right.

Every 2-3 months Lily and Phillip go for their routine endocrinology check ups. They are long afternoons- usually 3 hours plus traffic in a small room discussing uncomfortable topics like puberty- bowel movements-poring over blood glucose numbers and carb intakes. There is a physical exam for each child and review of bloodwork. Since Phillip is 13- he belongs to the adolescent clinic and Lily belongs to the Pediatric part of the clinic. Yet endocrinology encompasses both. We schedule the appointments together to cut down on the commuting- but I have to check in the kids in the different clinics. I send Phillip to check himself in- and then after vitals- Lily and I walk over to that waiting room since there are far less rugrats, chaos and germs. Sure we might catch a stare or a glare from some angsty teen who wants to be there as much as we do- but it's better than strep or the flu.

I sent all of Phillip's blood glucose levels and insulin doses and general paperwork to his endocrinologist on Monday, hoping, vainly to cut down on the length of the visit. It didn't work out. You know in the first few minutes when you start discussing bloodwork and the word "concerning" comes up that you are stuck. It's not Phillip's bloodwork- although we have been struggling to keep his sugars in range- this is fairly normal for a teen. Lily's hormones are elevated. Not the "you need more or less medicine" kind of hormones- the adrenal tumor kind of hormones. I know I should feel lucky. When I researched this damn tumor- I knew the prognosis was poor. I know it comes back.  That doesn't mean I haven't spent the past 4.5 years hoping it wouldn't. So we have an MRI- which they don't expect to see too much on- because she just had a CT in November and it didn't show any signs of tumor.  But we know they come back- so we have to see if we can find it because her bloodwork says something is going on. SO as I am processing this and the knowledge that if the MRI doesn't show anything(which normally I hope and pray for) then she gets and automatic ticket to a PET scan which is like 500+ times the radiation of an xray- which for your average non mutant is a pretty little blip but for us- it's the potential to cause a lot more cellular damage- with the hopes that you irradiate your child for nothing- to get an all clear- which means wither more tests or rinse and repeat in a couple months. Best case scenario- you catch it early enough and it's resectable.

On top of that, Phillip has a lump that we are investigating.  He is old enough to not want the world in on his bizness- so I will respect that. That involved an urgent ultrasound tacked on to today's visit. Yet in radiology- no siblings- under any circumstances are allowed in the room and I have Lily. SO we are mandated to wait in the waiting room while the 13 year old is checked out. The radiologist  knows all my kids because we made history when 4 of them were being ultrasounded(yeah it's a word) at the same time. Phil and I bounced between rooms like jumping beans- zone coverage. It was amusing in the ironic- hope they don't find anything kind of way. Yet today- in an after hours urgent ultrasound- I get the flipping tech who doesn't know us and won't let us in. Mind you Lily was just ultrasounded 2.5 weeks ago- so she know whas up. Never mind- wouldn't be an issue if they would have ultrasounded the right part. Well they got the right part- they just missed the right part of the right part. So the radiologist tells me everything looks fine- sometimes it can happen- yada yada- I breathe a momentary sigh of relief. We walk out- I ask Phillip if he's he said- yeah but they spent a lot of time on the wrong part. I assumed they were comparing sides- no- they were on the wrong side of the right side. Oh dear the sigh of relief now feels like my energy being forcefully sucked from me. So our endo meets us- we deliver the news- she seems befuddled as well and says she'll check on the full report. 30 minutes later- I have yet to exit the Tripler parking lot(we call it the Tripler 500) where hundreds of cars exit ONE road. ONE ROAD. EVERY Flipping day - no wonder our endo works late- sitting there for an hour- on top of the hill- watching the traffic on the highway build while again processing the potential mortality of 2 of your kids is a little maddening.  They indeed did not examine with thoroughness the area of the lump and can we come back Friday so all docs can be present and put this to rest. Sure- I guess that's better than not putting it to rest- but in light of all the other crap we have to deal with- the urgency of this is feeling a little onminous- nothing things get tabled- or scheduled through schedulers which takes WEEKS! A friend recently was lamenting to me how difficult it was to schedule her daughter's MRI. What's that like? My new official title may be MRI/CT/Ultrasound waiting room attendant. BTW the toilet paper is low in the CT/Ultrasound waiting room powder room.

And so yes- we have also maintained our record of shit happening while Phil is TDY. I would have rathered the toilet explode- the car implode or a wall to fall down or something.  Unfortunately he knows me well and I can't lie to him so when he asks how the appointment went and I say I'd rather not discuss it until he's home- he asks- is it kinda bad or really bad? I say standard bad. Because this is our normal now and it sucks. The only alternative is depressing so we fight on. I will continue to hope that any one of these things turns out to be nothing-or at least something manageable. And I will hope my husband makes it home this weekend so we can face this next round of tests together- or at least he can hug me at the end of the day so something can feel right in this world. 


***UPDATE*** Phillip's lump is just a cyst. I immediately called my newest LFS friend in hilarity at inappropriate times to share the good news. In our world- as far as lumps and bumps go- you ignore a cyst and move on.  She also had good news that their most recent culture came back with no bacteria- but there seems to be a fungus. We truly have a pair of fun guys.... ba dum dum. Lily's scans have not been scheduled due to standard inefficiency but being familiar with the system and knowing a nurse or two around the block- we probably are looking at Thursday scans. Lots of non cancerous- non metastatic thoughts are welcome.