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.

Support Groupie

As a young adult- I didn't understand the support group dynamic. I was a fairly introspective person and couldn't quite relate to how sometimes people just need people to understand. Despite losing my dad and brother at a young age- I still viewed life as something with endless possibilites and a rainbow at the end. I usually butted heads with my mother who at the time to me- seemed like a glass half empty kind of person. I had my own glass and was running around trying to fill it. It takes a lot of years and a lot of experience to realize that sometimes it is not possible to keep a full glass. Sometimes you get to a point where you realize that you don't even want a full glass- you just want to maintain what you have when the world around you seems to be dying to take what's left of your glass with them.  Sometimes one person's full is another person's half is another person's overflowing. Sometimes it depends on what's in your cup- who wants a full cup of crap anyhow?


Relationships change dramatically after cancer. I have no idea if it is due to the changes cancer requires or the inherent nature of relationships.  A friend of mine recently recommended the TV Show GO ON with Matthew Perry. I saw the previews but was hesitant to watch a show about a man who just lost his wife. My friend insisted she hadn't laughed that hard in a long time- so I gave it a gamble and spent the better part of a morning catching up on all the episodes. I laughed- sometimes until I cried and then I felt better. To me that is what friendships are about- helping someone with a few drops of sunshine along the way. Yet ironically- when you face with cancer- many people have no idea what to say- or they don't like the feelings your having a life threatening illness produces in them- so they stop talking with you. I remember once after my dad died talking with my mom about visiting with family and friends. She had pulled away from our biggest support group and I didn't understand why. She simply told me that sometimes it was too hard and too exhausting to be the one to always make the effort. People don't want to hear you aren't OK- so they stop asking and at some point- it's too much work to pretend you are OK- so you stop. And the calls become fewer and you find yourself making new friends. I thought that was craziness- until I had four kids- 2 with medical issues and then dealing with my own cancers on top of it.

My view of support groups has also changed. In this era of social networking- it has been said and is true- that although we are more connected than ever - our relationships have deteriorated. Social networks have given support groups a new platform. I am part of groups for Li Fraumeni Syndrome and Pediatric Adrenal Insufficiency that help me day to day. These groups really work for me because these conditions are so rare with rules for living that even docs just don't understand. These groups cover issues that standard of care can't touch- issues like how to live with life threatening illness. Although they are filled with different personalities- they are filled with people who have something in common are are trying to live their best life despite it. I finally arrived at the point where- it didn't matter so much how much was in my cup- I was there when bits fell out- and I at times exhausted myself trying to fill it back up.  Yet I also found people who could see what was in my cup and how heavy it was. Just having someone who understands and testify that although your cup is heavy- you can carry it. It may not ever get lighter- but it might and I guess that's why we keep carrying it. Sometimes they help you see the beauty of what's in your cup and you realize that you got so preoccupied with carrying the darn thing- you forgot to stop and really appreciate what you had in your cup. It's not about what is in anyone else's cup- everyone needs to fill it with what they want or what they can- it's about appreciating what you have in your cup and remembering why you were trying to fill it up in the first place. Sometimes the only reason to fill it is so you can share with others when they need a few drops of sunshine.

Au Naturale

Lily finally is on the mend. I know this because she is dancing around at inappropriate times, whipping her hair, legs and arms all around. This makes me happy. Not as much when she starts doing cartwheels in the house though, she's a big girl- now I have to get involved.


It didn't just resolve itself. I took her to my naturopathic doctor. In the "modern" medical world- naturopaths are considered quacks and charlatans. Some are. Just like some doctors are frauds and suck at being doctors. But if you find a good naturopath, it makes a difference. I met one such lady in Boulder and she is the type of doctor who makes me want to pack up and move back to Boulder- put on some birkenstocks(never have owned a pair, by the way) and just be healthy. Isn't that what doctors are for? 

No, every time I go to the doctor-doctor, I end up with a migraine. It's stress and worry and traffic and parking and rudeness. That is why people only go when they are sick- it's a last resort. So the Naturopath in Boulder referred me to a doc here- who happens to live in Waimanalo-one of the prettiest beaches on the island.  His office is attached to his house and has that old, beachy musty kind of smell- but I got over it because this place does not stress me out. Twice I have gone when I was coming down with or had a full blown cold- and twice- within 2 days of my visit I was better.  He has this electronic allergy, conductor thingy a mabob. I'll admit- the first time he handed me a metal rod and told me to hold it and touch my nose, I began to question the non quackiness of this whole operation. This electrodermal screening instrument essentially creates a circuit with you as the conductor. The doc can then introduce foods and such on a metal tray, to this circuit and if it doesn't agree with your energy- there will be resistance in the flow.  SO I'm thinking I am paying money for quackery. This is gonna be great- I might as well hunt down John Edwards and have him commune with my dead breast. The doc asks me what known allergies I have- I say tomatoes. I have like 5 that I know of, but it's my test.  There is resistance to tomatoes. Surprise. Then he tries various fruits and vegetables, cheese, meats. My 5 were all resistant and a few more. So he says try to avoid them, see if I feel better.  I'm still a bit skeptical, but I try. Now the acupuncture part. This is something I have always been curious about. I think it works. On a non measurable level- like positive thinking- if thoughts can change the outcome - why can't little needles help? Only one pinched a little and laying there was the toughest part- I have to work at trying to relax and hold still. It helps when you have dozens of needles sticking out of you- if you forget and go to scratch something- you get a nasty little surprise. So I imagine sunshine flowing in and out of all the spots to remind myself not to move. Oh God my inner hippie is being released. I've been several times- not headaches, no stress- I look forward to the appointments and the 10 minutes I sit on the beach down the road near his house and I've also visited the whole foods store after appointments. The biggest thing is that I feel better. I feel like I am learning more about natural ways to fix symptoms and that they work. It's pretty interesting.

So when Lily got sick and our team- who I trust- suggested the wait and see approach- I was not real happy. I know some things take time and especially with a system that has been beat down like hers-the body is a little sluggish, BUT from the mom point of view- I wanted her to not feel so yucky. SO I made an appointment for her to see my naturopath. I explain to her this is a different kind of doctor and tell her all about the machine he will use- but that mostly he will talk to her and ask lots of questions. Once she sees his dogs hanging around the office- she is set- she spends every moment playing with them. He points out that Lily is dehydrated. That could definitely explain the headaches. The other thing is- try to make sure she has protein in the morning, it will help stabilize her sugars. Basic stuff, but that can make an impact. He gives us several herbs and supplements to help her feel better and says to call him in 3 days to see if she is feeling better.  I trust him, but I take the supplements home and have to research 2 of them before I will even consider giving them to her.  2 are basic supplements- one is essentially broccoli and the other is minerals. The other 2 are silica and porcine duodenum- ick- pig intestine? He said the silica would help for the hot/cold issues she has and the pig gut was for her intestines.  I start my research- the typical silica patient is someone who tends to worry, is timid and shy. Well Lily worries, but she is not timid or shy. Yet this is a chronic silica user- I look up the occasional uses for silica- the hot/cold issue, getting rid of poo or any foreign substance, colds/flus and migraines.  It doesn't seem to have any harmful side effects, so I figure we will try it. Then I read it is used for those with profuse sweating, who tend to worry and are obstinant about their work. That sounds about right. The pig intestine- well there was actual science and support of how that works to soothe the intestine- go figure. All I know is that the pills smell really bad and Lily even scrunched up her nose- but took them anyway. In 2 days, she was dancing around again. She felt better, I felt better. Maybe it was just a virus and ran it's course. Maybe she needed some extra vitamins and minerals. All I know is that she is feeling better and faster than the wait and see approach. I know a lot of people with health issues. Some cannot be fixed by naturopathic remedies- but the naturopathic remedies can help support the immune system and combat negative side effects. I hope that truly integrated medicine- with an approach that supports health not just treating sickness- will someday be the norm. It's a high hope, but not unattainable.

The average time between Mallory hospitalizations= 6 months  +/- 179 days.

Wednesday night Lily was not feeling well. Sometimes when Lily has to air in her tummy- it's like the world is ending. Normally- in a 7 year old- such behavior would not be tolerated- but she is given a minute amount of slack since at one point in her young life she was split in half and opened up. I knew we were headed for trouble when she didn't eat dinner. It was pork tacos- not much can possibly come between Lily and as many bites as possible of pig. When I cook pork in the crock pot- she walks into the house and begins to jump up and down screaming- I LOVE pig!! Wednesday was no different- except after 2 bites of pig- she went and laid down on the couch. My mommy sense tingled- we were in for a long night.

After her second time waking me up- I took her downstairs to sleep on the couch with me. I knew Phil was flying the next day and I needed him to get enough sleep. We spent the night with Lily wrapped around me, sporadically screaming and kicking- falling into sleep when the pains passed only to wake up and vomit. I gave her extra hydrocortisone and hoped it would be like the week prior- a little bit of puking followed by a day of resting. Not so much. While I was getting the other 3 ready for school- I gave her another big dose of hydrocortisone. It came right back up. Ugh- I know what this means. I decide to let her tummy rest- get the kids off to school and give her meds one more try. Although she manages to swallow one pill- the pain is bad and she is asking for the shot. When the stomach pain is severe enough for Lily to ask for her IM shot- that's speaks volumes. I call her endocrinologist. She tells me what I already know- it's time to give her the shot which is an automatic trip to Tripler and a 24 hour observation period. I get out her shot and manage to stab my finger with the needle as I am opening it. Ugh. Now I have to find an appropriate sharps container- which you would figure in a house with a diabetic wouldn't be as tough as it was. Lily is writhing around begging to go to the hospital. I am beginning to wonder if there is a little man with a funny name I can give my first born to that will alleviate this curse incurred by our family. I get her shot loaded up with a new needle and although she says ow!!- Lily doesn't flinch. Now it's time to pack a small bag and hope for the best. I decide to travel light, which is stupid, idiotic, and just plain silly. I know better. Phil later laughed at me saying- yeah- that's quality denial right there- kind of like the time I drove Phillip to the acute care clinic thinking they would just prescribe up some insulin and send us home.

Our time in the ER, expedited by a call from our endocrinology team was a swift 5 hour visit before we were transported up to the ward.  All hopes were on this being a quick virus- yet as the hours dragged on and there was no fever, no more vomiting, or diarrhea- flags were being raised. Lily writhing around in pain every time a doc walked by bought her a trip to morphine land- which although funny and a relief from pain- makes a mommy cringe. If they are giving the 7 year old morphine- we have more to worry about than a virus.  That also buys us a trip down to xrays to make sure there isn't a major city or anything residing in her abdomen. All of our favorite nurses swing by to check on us- even Lily's surgeon stops in to say hi. Always a good idea to have her near.  I watch the clock until the approximate time Phil is supposed to land- I get the text he is always so kind as to send and reply with a request for him to call when he is done debriefing. I know he will be upset I didn't tell him sooner- but flying is the one part of his job that he loves- no sense in us both sitting around worrying for that hour and a half. He calls right away and asks if Lily is doing worse. Um- kind of.  He says he will be over to Tripler as son as he can. Hate those calls. I hate that I keep having to make them. I hate that people don't know what to say and that we have become so accustomed to crisis mode- that it is our normal. When something becomes your normal- people assume you are fine and can handle it. If it weren't for my neighbors and the friends we have at the hospital- we would feel completely alone in this. In a world where Twinkies meeting extinction is a crisis, not sure where we fit in. Oh well- back to what we do - just keep swimming and be grateful for our time together-even if it is in a hospital room with the incessant beeping. 

When Phil gets to the room, Lily has a look of horror- I want mommy to stay!  Our routine in the past meant Phil spent most nights- I don't do well in the late hours. I reassure her that daddy cannot stay- he has to work tomorrow.  He makes sure I have food for dinner and I get him up to date and he heads home to relieve Monica from babysitting duty.  My IOU list for her is so long now- I don't even know where to start. Lily and I settle in for the night. When the meds wear off, she is still in a lot of pain. By morning, the situation is the same- which isn't a good thing. At least it's not worse. Phil drops the kids at school and brings me coffee. I love that man. He too sees the score. The time vaccuum that is the hospital takes over. A particularly bad wave of pain buys Lily a CT scan. Fortunately the new ped oncologist is the ward attending- she is fabulous. I get the eerie feeling the powers that be are at work aligning the forces for Lily and it is reassuring and unsettling all at the same time. The CT has to be done with contrast. Oh happy happy joy joy. One sip of water instigates 30 minutes of writhing- 32 ounces of contrast may just kill her. We load her up on morphine and zofran and get to work. After 2 sips she looks green and just shakes her head. Phil offers her a movie- she chooses Tangled. I have an idea- a wonderful, awful idea. I ask Lily- How about every time they say hair or light in the movie- you take a sip? She shrugs- Ok. Which word do you want to do? I'll do both she says. Phil is shaking his head at me- you are totally going to hell he whispers, for the contrast drinking game. All I can figure is that when she gets to college- she will suddenly have the memory and then she will have the resources at her disposal there to effectively deal with it. After all she will have perfected the drink vile stuff and try not to puke part. We made it through the contrast and get down to CT- which showed a little thickening of the appendix wall- one more thing to keep an eye on and several swollen lymphnodes which could be due to several factors- all of which require a careful watching period.  So that's where we are. We are waiting and watching and hoping for the best. Phil spent the night last night- I came home and crashed with a Bella who is obviously distraught that her roommate is absent, Kiera is busy retreating and withdrawing- that's how she handles it and Phillip finds it to be a great reason to be alone and watch inappropriate programming on television. SO I guess it is kinda normal here.

Change

Phil looked at me this morning and said- you need to start blogging again.
My mom told me to months ago. But it is hard. It is hard because there are so many things I have to say that aren't pretty- truths I don't want to be the one to put out there and a whole lot of negativity and sadness. When I blogged during Lily's treatment- my goal was to find the up side to every story- every event. It became a positive, reaffirming experience. I started many blog entries in the past 6 months, only to get 2  pages into a rant and find there was no way out. No bright side shimmered at the bottom of the page and I actually found several more questions to address, so I logged out and went about the pile of chores that always seem to call to me.

6 months ago my life changed. I am glad to be here, yet every day live with the shadow of cancer. The shadow grows murkier with unknown aches and pains, any bout of nausea or headache then recedes with the symptom. I know this stage- you get through it. It just takes time for all the raw nerve endings to desensitize. Each time it takes a little longer to get back out there. My brother died when I was 15. I was ushered out of the room- so I wouldn't see him change colors- as the last of blood settles- no longer being pumped through vital tissues. I was sent to my room so I wouldn't see the van come to the house and take away my brother in a body bag. Unfortunately, my room overlooked the front of the house. I only had to suffer through a few weeks of school after that before summer break. I read nonstop, uplifting books like Elizabeth Kubler Ross's - On Death and Dying- trying to rush through the 5 stages of grief so I could get back to normal- or what we call it now- new normal. I ransacked the tapes my brother made for his walkman- getting rid of the 2Live Crew but salvaging Europe- remembering how we played the Final Countdown over and over in the hospital room. School ended and I was lucky enough to get to go to Hawaii for the summer. I wasn't supposed to go, didn't want to go because it meant missing Volleyball practices. It was my parents' 20th wedding anniversary celebration- postponed because they were dealing with a child who had a brain tumor, they couldn't very well leave me at home alone. 3 years later we got to rehash the process when my dad was diagnosed with his brain tumor. He collapsed in California and my mom and I travelled there. My uncles met us there. I don't remember a lot. I remember a nurse trying to keep me from seeing my dad as he crashed and they were wheeling him off to surgery .  I remember feeling sick of people trying to keep things from me that were pretty darn obvious. I remember drinking lots of coffee- they had these new fandangled cappuccino machines in the cafeteria- throw about 5 pumps of irish cream syrup in there and I was good, anything but Grape Soda.   On the way into the hospital when Bob was sick, there was a soda machine- I lived off of grape soda there. To this day- I see grape soda and my chest seizes up a little.  It's been over 20 years- it doesn't get easier, you just learn how to feel- differently.

It took months after my surgery before Phil could look at me without complete and utter sadness. It broke my heart. I know what it feels like to be on that side. I remember Bob telling me and mom to stop looking at him that way- he just wanted to be normal. Lil Phillip is so much like Bobby- it's such a wonderful and sad feeling all at the same time. But the look- it absolutely breaks my heart. I know the love and the sadness behind it and I hate to be the cause of it. I know a bit about what Phil is going through- watching him jump out of airplanes and fly rocketships- our history is filled with reminders of mortality. I know that the thought of losing him is more than I can handle- so I know why his eyes are so sad. I think that's part of the reason it was so important for me to leave this summer. I needed to be around family- but I needed him to be able to work and if I was home- he would have wanted to spend every free second with me. I also needed to prove that I was Ok- to myself.  Of course his work has been kind enough to pack on extra jobs and responsibilities since I've been home- time together is even more at a premium. I know how tough it is to get back in the routine- to focus when your priorities have been upended. He has the overbearing need to work harder at work to make sure we have health care. Because now in a family of 6, 3 of us have major medical concerns. "Normal" time is precious. So no- your social hour at the bar is not a priority for us. It becomes very very difficult to play the political games that a certain level of employment requires. You have to fight to find the balance-and it is complicated by others who think they have any idea of what and how you can deal with everything. The first work event I made it to was painful. Absolutely painful. It was great to see some old friends and in usual form- a few ladies that I've always enjoyed kept me company.  Ladies who can hold a conversation without tilting the head and asking- how are YOU? I'm fine. But how ARE you?    I'm down a boob- but I have this neat prosthesis majiggy thing that is heavy and hot and my hand swells sometimes and I do notice that everyone looks at me, my chest, my arm then back to me, so well you know- I'm fine.

It's hard that people don't understand. It's hard that you lose friendships over it. Whether it's because you can't deal or they can't deal- the fact is that friends drift away. You have the same few reliables and you spend all of your time worrying and wondering when they too will get tired of all the crisis- because everyone does- regardless of whether or not you have any control over it and secretly you hope the crisis is over- but part of you knows it's not. It's hard having so many penguins on your iceberg that you don't even realize when some have fallen off because you are so busy keeping others from jumping on and the ones you absolutely need from falling. It's hard when your husband takes a lunch hour to meet you at doctors appointments over life and death issues to know that he is losing penguins. Or that after 2 weeks of not seeing his son, taking him to a football game instead of drinking in the bar with the guys earns him a public rebuke. But these are the choices everyone makes. Everyone has to decide what their priorities are. I think the tough part is when you are criticized, publicly or otherwise for your choices when those criticizing do not have the first idea what you have been through. It is why I teach my children to consider others' circumstances before rushing to judge. So in addition to making the choices- you have to be the sensitive party and understand that some people don't get it and do what's best for you and your family anyways and take the heat. That is where the true turpitude comes in, you turn the other cheek- you continue to do your best and you continue to enjoy the hell out of your family while you can.

When my dad was sick- I used to come home at lunch or ditch class just to hang with him. We had some great talks. He didn't try to protect me, he knew he was dying. We went over everything from where he thought I should go to college(far, far, away) to how to deal with finances( make what you need to have fun and enjoy life) to what the weather might be like for graduation(probably sunny). When times get tough- I often rely on my memories of these talks.  He really liked Phil. That year we had a difficult time fitting our class schedules together- Phil and I didn't always have  the same time off.  My parents' relationship wasn't perfect- but they were a team and they were perfect for each other. They were real and honest and goofy but most of all they loved us and let us know. Phil wasn't used to it- we were an anomaly for him. They were a standard for our relationship- because we both know neither one of us is perfect- we are just perfect for each other. We faced many hurdles and heartaches. We know each other better than anyone. So it came as a big surprise one year- after we had been married when he told me something I didn't know about him.  I was taking the anniversary week of Bob and Dad's deaths particularly rough. My husband pulled me close and said- You know senior year, sometimes I'd just go over to your house at lunch and fix a peanut butter and jelly and talk with your dad, he was a great guy. Those talks really stuck with me.- It's in moments like that that I realize how important our moments together are. I couldn't tell you or even remember half of the BS we were dealing with classes and graduation during those months- but the impact of a few conversations we had will stay with us forever. So I take the time to try and have these talks with my kids and sometimes he ditches roll call to hang with his son- and that is all that matters- those are the choices we make that make a difference.

Fakey Fakey

I love my husband more than I ever thought possible. This says a lot since I grew up romanticizing life, marriage, and the happily ever after- my dream was to marry Superman. I got something better.   The key to a happy marriage is throwing all those expectations out the window and loving what you have. I'm not saying give up the dream or trying to make things better- I'm just saying you will make life a lot easier if you appreciate what it is instead of holding on to what is coulda shoulda woulda been.

The past 6 months have been really, really, really, really tough. Really tough. The toughest parts were not having a gigantic chunk out of my arm or a breast removed- the toughest part is watching what it does to my family. There are people everywhere who have cancer. Before you have cancer- you say- I've seen what cancer does- it's a monster. When someone you love gets cancer- you get angry and think about kicking butt and taking names. When you get cancer- you just want it out and realize- no one gets it unless they have been there but mostly it's agonizing to watch your illness affect the ones you love. So you take a family like mine- who has literally faced cancer for decades and you have a tough time relating to "normals". There is an ebb and flow. There are the calm years where it is easier to pretend that the normal BS doesn't bother you and that you give a shit- and then there are the ever present cancer years where you want to tell people to stick a sock in it- no your 80 year old grandmother having cancer does NOT give you insight into how this whole thing is.

I watch people. Not in the creepy- I will fiiiiind you kind of way- but when I am out- I notice people, their mannerisms- I read body language. I pay attention. I have noticed that since I had a mastectomy- people look at my boobs. Before my mastectomy- guys looked at my boobs. In my mind plays the thoughts they are having- well it couldn't be too bad- she still looks like she has a boob, I wonder which one? Well it's foam. It's hot, it's annoying and it's for everyone else's comfort- not mine. When I am home- I don't wear it when I want to be comfortable. When I work out- I wear a lightweight one to protect the area. It's sensitive- not in a painful all the time way- but like when you have a fingernail that gets broken and the skin under it gets exposed and it feels really strange and vulnerable. The other problem is balance.  One side is weighted different now and I have already noticed some back and shoulder pains. I saw an amazing lady in downtown Honolulu who was an oncology nurse for years and now she takes care of mastectomy prostheses. She is good. She gave me some comfy cotton coverlet bras after the surgery and the foamy boobs and a bra with a special mastectomy pocket to stuff the foamy in. She said we had to wait until I was healed to add some weighted prostetics.

This summer, while I was travelling in Denver- I felt better and wanted to start walking and working out. I found that Nordstroms had mastectomy supplies. The salesgirl was really nice, albeit like 12 years old and found me a sports bra that worked. I looked at the other mastectomy bras and they were ugly or impractical or lacy- which I don't do. I have enough things rubbing me the wrong way- I don't need lace.  Over the past four months- I have taken to washing my bras in the bathroom sink every couple of days. It gets old. On humid nights- sometimes it doesn't dry fast.

We took the kids to the mall the other weekend and we parked by Nordstroms in Honolulu. Phil asks me if I want to look at bras- I say sure- it wouldn't hurt to have another sportsbra- maybe they have better bras here. As soon as I get to lingerie- a saleslady asks if she can help me find anything. I ask if she has Amoena bras(that's THE mastectomy bra to have)  and she looks at my boobs. I admit- I'm a little touchy and it's technically her job to do it- but come on. She takes me to the very furthest mastectomy fitting room and tells me how lucky I am that she is on today- she is certified in mastectomy fittings. I tell her I just want to look at the bras- I already have a sportsbra and would like another one. She decides she needs to fit me- all the while telling me her aunty is a survivor.  She goes to get try on bras and I know I don't like any of them and tell her so- she says it's just to get my size. You and I both know that depending on the make, model, manufacture- bras run different. Pants run different- shirts run different. She is on my nerves. I pull the foamy out of my bra and she recoils. What is that? Why are you not wearing a silicone form?  Well I told her I had to leave town right after my surgery and hadn't gotten a new form yet since I hadn't been back to the doctor. She said she wouldn't fit me without a decent form, I was far too cute to be wearing that. Gag. Wow thanks for making me feel even better about this shitty situation. Strike 2. She grabs 3 different size forms and comes back and we try them on. They are not the right size. They are out of the right size but she is going on and on about how wonderful they are and how she has no boobs and a client once offered to buy her a set because they were so fabulous. Are you flipping kidding me?  SO I say great- whatever- Can I get a sportsbra? She says they are expensive and she doesn't want to sell it to me without a proper form and a prescription if we can bill insurance. Are you kidding me- I got one in Denver? Long story short- an hour of my time wasted and no bra. I called my prosthesis lady the next day and made an appointment. Went in- she gushed that I lost weight- got me a bra and a sportsbra and a silicone form and I was on my way in 30 minutes, zero cost. Lesson learned.

Last night when we were watching monday night football, I take out the new prosthesis and toss it to Phil. It's heavy. He makes a funny comment. But how are you going to play a pick up game of cornhole?  See one of my original foamy boobs had silicone beads inside for weight, much like a boob shaped bean bag. There may have been an evening or two that I got tired of wearing it and took it out and tossed it at him. It became a joke- oh are we gonna play cornhole now? That's how we roll...

We have had the reconstruction talk. Specifically last week at my surgical oncology follow up. The surgeon was pleased with how scrunchy face former boob area looks- I said that's good- I would be really freaked out if you came in here and gasped at how awful a job you did.  Yeah- I keep it real. So he starts smooshing the skin around and says- this would be really easy to reconstruct- there is plenty of skin here. Said the surgeon. Phil says- I think we're good.  The surgeon looks at him- really? I say- well let's just wait and talk about it when the other one goes bad. New resident is not sure what to make of me- although he's on notice because I had to correct him and let him know I had Li Fraumeni and not BRCA so I wasn't technically at an increased risk for ovarian cancer.  But I digress. He then looks at my arm and starts smooshing it all around- you know the plastics guys could probably revise this. Phil- Really- we're good. For a surgeon's son- he is having some quality aversion to me having surgery- I have to say I rather appreciate it.

I love that he loves me for me. I know what that feels like because I love him the same way. It breaks my heart that he is so worried about me.  He felt compelled to point out later that if implants would make me feel better, he would support me but he loves me and has never been a fan of anything fake. That means the world to me. It means even more because he is genuine and sincere.  That and I know how much he enjoys the tatas, or in our case now- the ta. In this day and age of fake tatas every which way- it's refreshing. Mostly I feel that life is too short to waste feeling icky and recovering when you don't need to. I'm all about efficiency. I'm sure with time my feelings may change- I hope they do. Until then I appreciate what I have and let the rest go.

Breast Cancer Prevention- Think before you Pink

October is upon us. I am excited for fall. I may or may not have already indulged in a pumpkin spice latte. I can't wait for pumpkins and spices and pink yogurt and pink cookies and pink ribbons everywhere and football players in pink- what? Ick. Oh yeah- October is Breast Cancer Awareness Month. Alright lady friends- There is this thing called cancer and it can grow in your breast. I know?! Crazy right?  It can happen. It happened to me. SO  feel your ta-tas. Know your body. If something feels wrong- get it checked out. Avoid radiation if you can to do that. Guy friends- don't think you are exempt. Feel your man parts- and your tatas too. Like I need to say that- but focus on things that feel different and then go back to business as usual. Whatever that means for you...


 When did Breast Cancer Awareness go sooo sooo wrong. How does dyeing everything think pink help the cause? If you look at awareness being the whole goal- what is being accomplished? When people see pink ribbons- they think of breast cancer. Ok- good- it's a start- that is awareness. But then what> Ooooh it's attached to a product that if I buy- proceeds will go to breast cancer research- that seems like a good deal. Except it's not. The amount actually donated is negligible in many cases and in most cases the company has already made a donation- so your purchase has no bearing on that. Does it make you feel better about your purchase- maybe- does the company make money- yes- does breast cancer research benefit- ever so slightly. DO your research.

I was sick of breast cancer awareness ribbons before I got breast cancer. Now they makes me nauseous and I'm not even on chemo. I've worked with non profits. They are not all created equal. Some pour their funds into valuable research efforts that otherwise would get no funding- other nonprofits build multibillion dollar brands and pay mostly overhead with donations. I do not agree with the spend money to make money philosophy where non profits are concerned. Some of the best nonprofits , ones that affect the most change- are these little grassroots efforts that are true to their cause. Know before you buy. If you really are dedicated to a cause- make a donation to that cause directly- not a business selling something that implies they support that cause. The idea of ribbons was good, in the beginning. It cost next to nothing to show support for a cause. Now everyone has a ribbon and a cause. I was handed a pink ribbon pin as I sat in the oncologist's office right after I heard that I had 3 lesions in my breast. After I had multiple punch biopsies ripped from said tumors- I got a take away pink ribbon gift bag with pink ice packs and more pink ribbons and pink- how to take care of your breast which may or may not be removed entirely depending on the results of this procedure- sheet.  None of it helped me feel better about any of it. None of the organizations or research papers I consulted to try and figure out what the best treatment option- if any - is represented or benefits from goods sold by companies that throw a pink ribbon on them. Pink dye on white gum for breast cancer awareness- are you kidding me?

As a breast cancer survivor- I know that I am "lucky" to have such a prevalent "treatable" cancer. Over 1.6 million people are diagnosed with cancer every year(cancer.org). And these numbers don't include Carcinoma in situ(one of my tumors), only the cancers reported to registries and NO skin cancers. 1500 people die a day from cancer.  I know that billions of dollars of research has gone into finding treatments that work.  I also have researched the subject enough to know scientists are only now learning why these treatments work for some people and not others. With this new information- it will be at least another 5-10 years before there is enough data to support new treatments and whether or not they are effective. Depending on their stage at diagnosis- many breast cancer survivors will not live to see it. The National Cancer Institute was allotted $5,196,136,000 for cancer research in 2012. 5 Billion dollars. $51.7 million at least went into researching causes of cancer. $34.8 million was awarded to research effective and efficient therapies for cancer treatment. $3 million of that went to researching prevention.  This is divided among all cancers. Well- which ever ones have the folks that write the best grant proposals. Which they are generally paid to do or hire out. So again- you need to spend money to get money. There is a definite need to fund valuable research projects. Research projects that aren't funded by politics. This is where the non profits come in. Not all donations are created equal. When I chose to support Alex's Lemonade Stand- it is because I researched their foundation and saw how much funding went directly towards valuable research. Organizations like Susan G. Komen started out noble but soon lost the focus- money was spent on litigation and copyright infringements of their brand- money that was touted to go towards breast cancer research.

As the lucky recipient of a treatable cancer- I also wonder why more isn't being done for prevention. Cancer has become an epidemic. Children are getting more and more cancers. That is problematic. There is not one cause. It is preventable. Although I do suppose that prevention isn't nearly as lucrative as awareness and treatment. Children should not get cancer. Women in their 30's who don't smoke and are relatively healthy should not get breast cancer. I can blame genetics- but my gene didn't just mutate- something causes the damage. I would love to be able to help my kids avoid that.SO for now- I support awareness. I support prevention and I support the millions of women and men and families who face this disease together. All cancer is life changing. I would like to see less ribbons for a whole host of reasons.

www.thinkbeforeyoupink.org     



http://obf.cancer.gov/financial/attachments/2012cj.pdf