Half way.

A couple of long days, but not too stressful. I am super grateful for the new peds radiologist. He's been really great about working with me, listening to my concerns and the radiation techs- who have known us for years, have been wonderful.

Lily's day started out fasting- since they try to get good images of her belly and that's where the adrenal tumor would likely grow back- it's better to not have a lot of extras in there. We all know how much Lily loves food(what's not to love?) it is a minor challenge. We all tend to get Hangry - so we sat down and went through old baby pictures to distract her. Of course as we sit there, she's sniffling, coughing and says her throat hurts. So just like her mama- she gets sick for scans. Which other than worrying about the breathing and coughing- what do you want to do when you feel sick- lay around and sleep. Not in a cold, hard, loud, tube- but we take what we can get. As we looked through pictures, I found the one that always sticks out in my mind. This is one of those pictures that always makes me think- wow, was that big old adrenal tumor already there?

But we can't wallow or participate in shoulda coulda wouldas. We learn and go forward. Which is why we scan. There is a lot of anxiety surrounding scans and one of the reasons many clinics won't do it- they feel it causes more stress than benefit. I think it is an individual thing- like anything. This is one of those times genetic counselors and a good support staff is instrumental- they help people decide what is right for them in this area. Some find the scans too stressful and  pay attention to symptoms and have things immediately checked out. Since we have been doing this cancer drill awhile- and over many generations- there is some merit to both. Ideally the routine that works with the person's needs and coverage- is ideal. I didn't scan for a lot of years. It was too stressful, but over time I have seen first hand how catching tumors early has definitely advantages in survival. There are still so many unknowns, but I want the best chance for my kids. There will be tumors due to type and location that really not much can be done without damaging quality of life. Those decisions suck. I have one of those decisions in my head. You make those calls at the time you have to with the information you have. 

We get to MRI around 10:30. We fill out the papers since they last a year and it's been a year. I don't think I've never not filled out the papers- but its one of those things- it's almost automatic. I read the questions out loud so the kids can answer. The are you currently pregnant question usually gets fun responses. 

The tech hands Lily her scrubs and takes the movie Lily brought to watch in the groovy MRI goggles. She changes and we go over the plan. There's a lot to scan. She has a dedicated brain and abdomen as well as the full body for LFS screening. They try to minimize the time as much as possible but really want good images- so we know it's gonna be a long day. She said in between each set she will give Lily the opportunity to get up and walk around. I know this adds on to the overall time, there are coils and gear that has to be taken off and reset each time she moves- but I appreciate them taking good care of her. 

off to the races. 

The goggles before they put them on- with headphones, under the head "cage"

Overall, Lily is in the scanner about 4 hours. The peds radiologist comes and talks to me after the first round, it all looks good so far and then each subsequent round. We talk a bit about LFS and things I've noticed with Lily and through others' experiences just to help him understand my concerns. He has a 10 year old and it shows, he is great with Lily and great with me. I appreciate the extra time and care. Most MRI facilities are really busy, Tripler is exceptionally so(lots of active people and dependents) and they are down 1 machine. They brought in a portable out in the parking lot- so patients periodically come in, change and head out back. It reminds me of my very first MRI when I was 15- in the parking lot of the hospital. 

Lily comes out a few times- they had to run a couple sequences over- which in MRI world means starting over. The cold is definitely a factor and I feel bad for her- but she is doing well. We walk up and down the hall and I rub her back. Then she gets a bit of a reprieve- the system has to reboot and so she plays on her iPad for a bit. As she goes back in, the doc comes and we talk about her arm. We've been watching a spot for years in her humerus. We kinda forget about it in between scans and then it's like ripping a scab off- oh I forgot about that. This is one of the gray areas. You find things that could be normal weirdisms you'd never know about- or it could be the beginning of something. In LFS we tend to err on the side of it could be something and out is better than in. But that works well for superficial lumps and bumps- once you get deeper- you have to start weighing benefits and risks of digging around. He would like an Xray to check. I used to freak out about X-rays- but I know that it will give him different information than the MRI and it is better to see bones with.  I ask- if it doesn't really show anything are we going to come back and look more with MRI and should we do a more dedicated MRI since it has grown a couple millimeters and she is in there and we still need to look at her arms? And this might be the point he starts wondering what he got himself into with us. So I explain- we grow weird. That certain cancers seem to pop up at certain ages in LFS. On a normal person I would be ok saying"it's a cyst" and maybe monitoring it- but in an LFS kiddo with a history of 2 cancers already- I would be more comfortable with more information especially if we need to decide to biopsy or remove it. I explain how the sarcoma in her leg and my arm really never concerned the docs and it was at my insistence they were removed. It happens a lot in our group of mutants. And with hormone changes and this age- I need to know more. I want her oncologist to have more information. He orders the dedicated MRI. The tech tells me she saw the Mallory's were on the schedule and took leave for the rest of the week. I joke she should know- Lily's not the easy one- she shoulda taken Bella or Kiera. 

Lily is done just in time for her hearing aid appointment. Which luckily is just down the hall. We enjoy a little Chopped while we wait for the audiologist. She's getting her new streamer so she can pair her hearing aids to blue tooth and use them as headphones. It's actually pretty cool and she is stoked. 

rocking out to Katy Perry. Roar.

We head back to radiology so we can look at the images with the doc and squeak into the Xray. It's now after 5 so the hospital is quiet. I like this time in the hospital. And I know traffic is a bear- so no rush to sit in it. I feed Lily a pop-tart from the vending machine because I know she's starving. The spot in her arm is bigger than I like. Definitely want to discuss this with her onc. She is fascinated by her insides. Her left adrenal looks good, a couple other areas I was concerned about look good. I feel positive overall. We head over to Xray. 

The tech wants to know which part hurts. I tell him they saw a spot on MRi and we are cancer screening. His bedside manner instantly is more genial. We finally are done for the day. I read half a book, my head isn't splitting, I've managed stress and lily did exceptional. I thank her for doing this and she gets to pick dinner. 

Chili's- Root Beer and games

We get home and pretty much crash. I had been patting myself on the back for how well I handled it-and that I was feeling pretty decent and then the exhaustion hit. I woke up Thursday feeling pretty awful. The debate- do I go back to bed or get on with the day? I went for a walk and called Monica for a mini mom melt down. I wish she was next door still- but telephone works. She reassures me that I'm allowed to be exhausted and tired and it will be fine. Sometimes you just need to hear it. I take it easy as possible until afternoon activities. We take Phillip to work out, Kiera to voice lessons, a quick stop at Walmart for necessities and a movie for Bella in the scanner- she's a huge Divergent fan and the Allegiant was out on DVD. We pick Phillip up- drop him and Kiera off- they will take Lily over to Aunt Theresa's for dinner and Bella and I are off to Tripler. 

1st non sedated solo MRI- rocked it!

Bella is milking the hunger thing- and suffers from my nervous bladder. I think we stop at every bathroom. We fill out her forms, change her into scrubs and she and Ducky are ready to go. Ducky gets a quick check in the metal detector and is approved to ride along for the MRI. 

Bella and Ducky- a special stuffed comfort made by her friend Sophia. 

I like the quiet of evening MRIs. Except for the construction and the noxious chemical smells that are coming from down the hall. Fortunately they only work until 6 and it fades when they close the door. The tech pokes her head out and says Bella is doing amazing. She even passed up the first break.

Bella and Ducky

 She comes out a couple times after that and we walk down the hall and get a drink. She is so much more relaxed. I'm glad it wasn't as bad as she feared. She wants to see outside, which I find fascinating. We walk down the hall and I warn her it's dark out- so we can't see much. Overall she was pretty quick- less than 2 hours in the scanner. She is the shortest one- so that helps. Phillip is gonna take AWHILE. She picks Taco Bell for Dinner so we make a run for the Border. We chase that with a McDonald's ice cream cone. I thank her for going through it. I know it's not normal, easy or fun and I appreciate it. I'm impressed- I knew she could do it- I'm glad she did so well. 

Proud of this Kid!

Tonight is Phillip and tomorrow morning Kiera. Phil has Phillip duty- which after an overnight alert shift last night means he'll probably get a good nap in the waiting room. 

I don't expect to hear about the kids results right away- hoping maybe to catch up with the radiologist on Saturday. I'll give him time to make the formal reports and call the oncologist next week. Thank you for keeping us in your thoughts, I definitely appreciate it.

Compassion Fatigue- Turning Lemons into Lemonade, Again

We all know that person. That person who always has something tragic going on. Whose life seems to be shrouded in drama. The person always in need of something.

I try to be useful. I try to give. When there isn't money, I give time. Sometimes all I can give is a hug, typed with love from miles and miles away.

I was the kid who took in the stray. Who saw the good in people who were troubled. Who gave people the benefit of the doubt and an ear. I gave more when I could. If there was something needing done- I'd do it.

I am rapidly approaching my 3rd year of living with cancer. I am slightly offended that people sound so surprised as they tell me how good I look.  Hell, before I started chemo- I looked completely normal. I'll admit that I don't get out a lot lately but I seem to be always going. Mostly I limit my interactions because I am a perpetual volunteer and one of the only ways I can prevent myself from volunteering is to keep away from situations where it would be asked of me.

One of the guys at work recently asked Phil if I was coherent anymore. As we laughed about that, tears well up. Because yes I am coherent, well at least I'm functional enough to think I am. But that's the problem with where I'm at, all of that can change and very quickly. Or slowly. You just don't know.

When this began- my diagnosis and journey with cancer- it was not new. I have lost track of the number of cancers I've participated in.  Family, friends, mutants, acquaintances. I am a huge proponent of sharing your journey, letting people know what's going on so that you can get the support you need. I also completely understand why people quietly deal with illness and never let anyone know. I never wanted to be or have my children be a poster child for illness. It's just not in my comfort zone. We try very hard to maintain some semblance of normal despite completely abnormal circumstances.

I have a low tolerance for bullshit. I am tired of inefficiency. I want to make plans but am terrified to take the step. I am in a holding pattern which when I think about it- will be as good as it gets. I will not get better. And this is exhausting. But then there's the part of me that quietly yells from the dark depth- there is ALWAYS a chance. There are new developments in the world of cancer.

We have had some really good support. And there have been times when we have had very little. It ebbs and flows. Sometimes when it rains, it pours. There are times my fridge and freezer are overloaded with generous meals prepared by friends and family. There have also been times the pantry was bare and I tasked the eldest child with figuring out how to order and pay for a pizza with my credit card. Moms have gone out of their way to bring my kids to and from school and activities. And I have asked for help and been ignored. or forgotten.  It happens. I usually figure it's me and my bad communication skills. There are times people try to be helpful and it creates so much stress I just sit and cry. And there are times when the thoughtfulness is so helpful and just perfect that I sit and cry.  I think chemo makes me a little emotional.

I've always said- I don't want to use up the help- I want to save it until I really need it. I never want to be that person who always needs something. I don't want people to look at us and think- oh shit what do they need now?  I've been chastised by friends for not readily accepting every offer as it comes. Yet I worry that people will get tired of the marathon that is us- living cancer.  I used to say- I don't have a lot of money, but I can give time. Now the sands are drifting to the bottom of the hourglass and I am constantly wondering when it will run out. When time will run out, when compassion will run out.

And then I get an email from Alex's Lemonade Stand Foundation. Would we please be their representative family from Hawaii? All we have to do is share our story and put on a lemonade stand in June. Like I said, I have a serious problem with saying no. And I am up at night wondering how I will find the energy and how to make it work with all the other events and obligations. I feel the compassion fatigue. But then I get inspired. The end of the school year activities, the girls voice recital- which is also a benefit for Make A Wish, all sandwiched between chemos. And then I realize sometimes I make things into a much bigger deal than they need to be. The point of ALSF is that every cup counts- every dollar matters. If our story can help inspire others to do a stand or donate- that helps and I know Alex's LSF has funded research that directly affect families with LFS, families like ours. My kids are excitied about being able to set up and run a lemonade stand. Many kids my kids' age are spending time fundraising for trips for baseball, soccer or other activities which for Hawaiians requires major travel expenses.  That is their immediate future, my kids' immediate future is shadowed with healthcare concerns- and so a Lemonade Stand it will be. And I realize that I rely a lot on the compassion of others. And I realize that they may be better at saying no. But I realize that compassion, like love seems to grow exponentially when it is given away.

http://www.alexslemonade.org/campaign/alexs-lemonade-days/hawaii

PET Scan Results- the Adventure continues!

I got THE call.  The call you don't want after your PET scan. No news is good news. There is news.

The first thought.

DAMN. 

Second thought. 

GDMFCSSOB.

I cut to the chase- How bad is it?  

It's not horrible but we have progression and we need to discuss options. I can tell you right now what I'll recommend. 

Yes Please. 

So what we know... the short story is I have some new growth and we have to switch up our chemo to get the cancer to knock off it's nonsense. Metastatic Breast Cancer is a chasing game. We treat, we hope it works, we rescan and hope it's still working. Most chemos for mets last for a short time before the crazy cancer misbehaves and works it's way out of time-out. Our job is to be attentive and keep it in time out for as long as possible. My cancer needs to be put back in time out. 

15 months ago I had lots of round spots in my lungs, bones(femur, iliac, spine, arm). In March- most of those spots had disappeared(major yay!)- except for a shadow on my femur. That is called complete response- all those misbehaving cancer patches- had the chemo and went into time out. So we continued because it worked. 

My cough is back, which is a daily reminder that I am not as healthy as I pretend to be. I do feel pretty ok. Which I am really grateful for. Although there is still activity in my lungs of cancer cells- the old spots are pretty stable. That is good news. Unfortunately there is a new spot in my hilum(middle of the chest- part of the lungs) that's bigger than I'd like, a bunch of new bone spots-in new locations- and the right femur spot of old is pretty angry. On top of that there is a little adrenal spot- which adds yet another organ affected- not good- but also reminds me of Lily kayda's adrenocortical carcinoma and freaks me out. Breast cancer can metastasize to the adrenals- but it could also be new tumor. So that is something we will have to watch carefully and evaluate. For now we treat it like a met- because it is small. 

When new spots grow- there has to be a change in plan. If what you are on is working- there should be no new spots. Mind you the stress of the past month's brain mets- physically and emotionally- probably are weighing heavily on my body. But we have options. We hoped for stable- but we deal with what we have. 

We need to throw some more at the hormoniness of these tumors- they are hormone positive meaning they love estrogen and progesterone -which women's bodies make. I got rid of the organs this summer- but the amazing body has many ways to do things- like creating estrogen from other molecules. There are pills that I can take daily that will stop this conversion- to make sure we have less estrogen feeding the cancer cells. Of course the down side to this is some crummy side effects and bone weakness- which is already a problem due to the mets. But looking at alternatives- you have to get rid of the biggest threats. So I will be starting an Aromatase Inhibitor(AI) called Arimidex.  It's a pretty standard hormonal treatment for breast cancer after the ovaries are shut off(post menopausal).  SO plus side- no extra trips for infusions with this med. 

Since I have new bone issues and will be adding the AI- I keep taking the Xgeva- which helps my bones hold on to calcium and prevent breaks from the weak spots. That is a shot and will still be every 3 weeks. 

Then we have to address the new growths. We will be trying a chemo called Kadcyla(TDM-1- which Phil has taken to calling Touchdown Molecule 1). It is a drug we seriously considered doing first- but  recommended that we keep it in our back pocket and give the other chemo a chance. It's a buying time proposition and we try and eek out each step. We got 15 months out of my cocktail- I would have liked a bit more but am so grateful for this past year- ups and downs and seeing new milestones for my kids and the together time and reconnecting with family and friends. There was a time years ago where there were not these options. I hope for my children's sake and all other fighters out there- there will be even more down the road. 

Kadcyla is essentially Herceptin- with the chemo attached to it that finds the Her2 receptors and latches on to the cancer cells. It is very directed chemo and they have seen good results. It will probably have a similar side effect profile to what I was on before- but we will see.  My doc called it the iPhone 7 of herceptin- kinda wished he had shot for iPhone 8- the 6 was released much too soon. But it will be an infusion every 3 weeks- very similar to what we have been doing. The nurse ordered it today- so we will wait to see if it comes in on time for me to keep on my Monday schedule. 

So the take away is that we have continued hurdles- but I remember how bad it felt to see all those tumors light up over a year ago and here we are today.  We take it a day at a time and live our best life and try to find as much love, comfort and fun along the way. I am very thankful for all the positive energy, love, words, juju, prayers and offers.  It truly makes a difference, for all of us here. I also want to say- if you feel like calling -call- or text or drop a message or a card.  Please don't be afraid to  reach out. I know it's hard to know the right thing to say- because sometimes there isn't anything that can help- but I can tell you how much it means to just even hear I'm thinking about you- and it gives me a chance to respond and let you know that I'm thinking about you too. 

And a HUGE HUGE Thank you for the Team Mallory Support- my friend Gina was kind enough to start the fund up again for a 3rd SALE!  If you are interested in grabbing this fantastically designed Tee by Hope Friedman - it will be up until February 8. There's a new ladies fit too! We've been using the proceeds to have the housecleaned every 2 weeks and tip the Valet guys at Tripler generously. Oh the difference it makes!! I still am completely in awe that we have a t-shirt- but adore seeing pictures of all of our friends sporting Team Mallory. I'm hoping to get to tell you about the gamma knife experience soon- I'm still waiting on my superpower to show up...as my good friend Trish says- I wish my super power wasn't sprouting tumors! 

TEAM Mallory Until FEB. 8

Pulling for Supermom

So here's the plan. Yesterday I had a super duper High Definition MRI of my brain.

We were referred outside of Tripler for the scan- which in all honesty was fine with me. It's nice to see how the other half lives from time to time.

We walk in- Koa wood decor- friendly receptionist- chilled water available for consumption. The familiar hum and rattle of the MRI machines next door permeate the check in process. The seats have cushions. There are not 1 but 2 TV's so everyone waiting has a view.  I get called back to my secondary waiting room- which is slightly smaller than my living room and I get handed a remote control to watch TV.  The plants and surroundings are neither sterile nor terrifying. Before I can even find something to watch the technicians are ready for me and lead me to the machine with headphone so I can have music to listen to since they noticed I marked that I am claustrophobic. Isn't that my luck - little waiting in the room that I wouldn't mind waiting in.

Some of the problem is that I was to have a PET scan last week. Well due to scheduling gymnastics associated with having brain tumors- it was cancelled and not rescheduled and there was a mix up. As it turns out- I came down with a nasty cold that afternoon and it is just as well that I didn't have to chase down guesses or repeat scans to determine if spots were cold or cancer.  I've had colds for scans before and nothing quite adds to the claustrophobic effect like thick mucus dangling down your throat and an MRI tech yelling at you to hold still. Yet the these techs handed me a special cough drop from Chinatown and I'll be darned if that thing didn't work. An hour later I was done- neither suffocated or coughing.

As we left the MRI suite, we noshed on a rather delightful salad from the coffee shop in the foyer of the building.

The MRI is important because is it going to help the surgeon and the radiation oncologist pinpoint the exact coordinates of my misbehaving tumors.  MRI gives the best resolution of swelling vs tumor and all the various structures in the brain.

Jen's toomah

Tomorrow, I go for gamma knife. There are no actual knives involved- it is not surgery. It is pinpointed radiation.  Around noon- the neurosurgeon will screw(yes- screw- and it is as terrifying as it sounds) a frame to my head. As terrifying as that is- the reason is to help zero in on the tumors and to prevent movement.  Then I will have a CT scan. 

After the CT scan- I will get to wait with Phil and my new frakensteinian head piece- while the doctors plot and plan the coordinates for treatment. They look at the MRI and CT and tell the computer exactly where my tumors are.  From there it is pretty much a software driven deal. When they are ready for me- they put me in the colander (which I think they technically call Collimeter) but potato/potato- see the round thing with holes in the picture below? That thing. And this is where the anti anxiety meds are worth their weight in gold. 

I then get pushed into the massive radiation machine which shoots tons of radioactive beams that individually aren't too scary yet when they converge in the right spot- ZAP! Then we hope hope hope that :

this works.

there are few side effects. 

I don't freak out. 

Afterwards they put corks in the screw holes and I am bummed it's not october cuz I am the bride o Frankenstein.  Kidding. Apparently they put bandaids on the holes- which are just flesh wounds- but we all know how much the scalp likes to bleed. And we go home and hope for no complications. 

And hope the tumor dies. 

and hope my brain does not swell. 

and hope for minimal side effects. 

When I was 17 my dad had a brain tumor. 3 years before my brother did. Brain tumors- I am familiar with them and they scare the shit out of me. They can take away who you are, what you can do and your future. They are angry little bastards. Mine just happen to originate from my breast, we think- so here's to hoping they are boobs. The only way to know for sure would be to biopsy- and biopsying brains is pretty tricky and if you are going to biopsy you might as well do surgery. Gamma knife radiation is "less invasive". It is the best option for the situation. It would be the best option no matter the tumor type. 

I remember vividly sitting in a cold room, very much like the MRI waiting room at Tripler- listening to the humming and bustling of nuclear medicine- trying to read Anna Karenina for IB English and failing miserably.   To say that this process brings back a lot of hard memories is an understatement. 

Yet I remember how far we've come since then. How far I've come since then and I know- what will be, will be. I have more to do and am confident this is yet another step on the path I am supposed to be on. For years I had been terrified of chemo because it almost killed my brother. Yet it worked for me. For years I have hated radiation for making my dad's tumor angry. Yet here I am facing down yet another fear. 

It's tough because with exception of a nasty week of vertigo- I feel pretty OK. I keep being told this procedure is tolerated very well and I've read reports that it has been successful in LFS patients. Of course I tolerate a lot of things that I feel are bullshit- so this might be more of the same. Worst case scenario- it doesn't work, I have side effects, swelling and end up having to have surgery to control swelling. Best case scenario- the tumor dies and I can control things with my mind. 

Tolerates well= go home and have a headache and maybe some nausea. 

not too bad a deal if it works. I could have residual damage- hearing loss, vision loss, and others tumors could pop up. But we are going to hope for the best and pull for Supermom!

SO pull out your Team Mallory Shirts or your MUTANT tees if you got em- we need some extra good juju tomorrow.  Do something tomorrow you've been wanting to do for awhile but haven't or just do something fun- in your shirt and send me a pic! Many hugs from Paradise. 

Team Mallory

Right after I started treatment, my good friend Gina- from her remote location- sent me an email asking if she could help create a T-shirt as a fundraiser for our family. I've known Gina for a lot of years and she is a kind, thoughtful person. Of course my gut reaction was- OH Dear God No. But I decided to heed my mutant friends' advice to allow people to help me and took a moment to think on it. I like Tshirts. I wear Tshirts. Phil likes Tshirts. He wears tshirts. The kids are constantly growing out of their Tshirts. We have Tshirts from squadrons, from trips, from sports and now theatre. So why not? 

I talk to Phil about it, knowing full well his reaction is going to be- OH Dear God NO. I was not prepared for the veil of despair that came over his face. I expected the adamant proud reaction- we are fine. I jumped on the defensive and explained we needed to let people who love us help and the majority of our family and friends are over the ocean and cannot prepare a meal or run the kids to school and want to help. At least that's what people keep telling me. He simply said- It's not the T-shirt. I don't want to be the family that has a Tshirt because I don't want it to be that bad. I'm not ready for it to be that bad. 

I understand the panic. The tough realization. I hate that I ultimately am the cause of pain for him. That there is not much we can do to change the course we are on. A course of limited time.  When my brother Bob got sick there was no time. No time to Make a Wish much less have it granted. Barely enough time to say goodbye. Some of the toughest parts are the unknowns. But I remind myself, no one knows. We were told maybe 5 years with Lily. You just don't know. We have some key information that changes the way we play. Perhaps it's time to let our friends play along side us. So I sit down and try to think of what I would want on a Tshirt? That wasn't swearing associated with genetics....

When we joined the Air Force fighter community years and years ago, I made many friends- some by chance, some by design.  It's a family in so many ways. Orders throw you together- but choice keeps you together over time.  A friend, who both she and her husband outranked mine by several years taught me that friendship and respect know no rank. Long before Edward or Jacob became the gold standard of teaming up-she referred to every family as a Team. She was kind to everyone and taught us most success comes from working as a team. I embraced this approach and welcomed every letter and every card that greeted us over the years with her signature address- 

TEAM MALLORY. 

A few years after moving to Hawaii, I faced the challenge most stay at home moms face- what is my purpose? Is this enough? Meanwhile my mom felt further away from each milestone for the kids and I tried to find a way to bridge that gap with a new technology- blogging.  The kids were monkeys in every way- and it became Monkeying Around. As life and technology seem to do- all this changed and grew when Lily was diagnosed with 2 cancers- one of which had and extremely poor prognosis. Entries were no longer happenstance potty training forays- they were a lifeline- a way of healing and sharing the heartbreak and survival through a really dark and scary time. The title reflected our military connection and the focus of the time- Lily Kayda and the Tale of the Terrorizing Tumors. Publicly blogging forced me to find a bright side to every story because I firmly believe that the way you approach a problem and attitude affects the outcome. It also became a tool for me to help others understand more about us and living with cancer as those who live with hereditary cancer syndromes like Li Fraumeni Syndrome have to do.

I never thought cancer would skip me. It is a lifestyle of careful watching. Knowing my body and trying to teach the kids without being oppressive to do the same for themselves is always in the back of my mind while preserving a sense of normal. Although there is always a certain element of shock with cancer diagnosis- when you have a family cancer syndrome like LFS- you kinda are waiting for it. After watching my dad and brother be stripped of their personalities quickly with brain tumors- breast cancer was a relief for me. At least it was a part that could be removed. I knew it was still a threat. But the summer after my surgeries was the perfect answer- visiting family and spending time with my kids on the road- like my family used to do growing up.  One of my favorite mementos from the trip was a necklace I made in Colorado while Kiera tried to decide on which beads she wanted. It was a simple endless knot with a few beads. Some call it a celtic knot. It winds round itself like protein structure or DNA. Some call it a Buddhist knot. Also appropriate since most only know my better half as Buddha. Either way I love the symbolism of it. No beginning, No end. 

with my buddha, my monkeys and my necklace

SO I cut and pasted my ideas into a rough outline for Team Mallory- jet, monkeys, knot- and sent it off to Gina. She took care of contacting the company and after a few weeks they fired off some designs. When the design opened on my computer, my first thought was- OH DEAR GOD NO.  I shot it off to my cousin who said she liked it. It was a monkey driving a very inaccurate cartoon of a fighter jet pulling a banner. A monkey driving a jet? Pulling a banner? No. That is not going to fly. My cousin said no one expected mechanical accuracy on a T-shirt. I've long given up on accuracy but I just felt like it missed the target.   We were fast approaching Christmas, there was too much going on and I was spread too thin so I told Gina I would have my cousin come up with something and filed it away under a dusty mat in my brain. I was a failure at letting people help and I tried not to think about it again. Until Gina forwarded me some ideas her friend Hope, a graphic designer put together. They were beautiful. The knot was the same as my necklace and the center of Team Mallory. Four monkeys and their shenanigans. The jet, symbolic of not only a career, but a family of support. She captured us. And without these amazing ladies- the concept would still be buried under that dusty mat in my brain. I finally confided in Gina that my worst fear is that they would go to all the trouble of doing this and no one would want a shirt. Sometimes it's just easier not to ask for help than to ask and get rejected. 

TEAM MALLORY T-SHIRTS

So Imagine my shock to see within the first few hours, dozens of shirts selling.  The support is overwhelming, unexpected and so appreciated. As a friend said- it is exactly what you would do it for any of us- we just want to help. I knew letting others help me would be difficult- but I had no idea it could be so wonderful. Thank you to Gina for not giving up when I was difficult. Thank you to Hope for capturing a vision. Thank you to those who keep up with us and are brave enough to publicly announce any association to us. Thank you to all of our friends for the support and love. Team Mallory is bigger than I ever expected. Thank you for Hanging Strong with us. 

Shirt Orders can be placed until February 15, 2014.  CLICK HERE to Join TEAM MALLORY