Believing in Memories

Today is my last chemo of the year. I'm going into my fourth chemo and unsure how many treatments next year might hold. I heard from friends that the 3rd is usually the worst, so I was dreading it and planned on feeling down and out for the holidays. I definitely felt more tired, but the holidays were upon us- I can't say I was any worse off than anyone else. For me the 3rd round was the toughest so far emotionally. I can definitely attribute that to the holidays and to the chemo.

It's exhausting. The waiting, the hoping, the wanting. I'm not talking about presents. The gift I wanted most could not be wrapped and put under the tree.  Yet it is also a time for reflection. I remembered the years Bob and Dad were sick and tried to think back to what gifts were given and received and I could only think of one. The last Christmas with dad I gave him a copy of the Polar Express. We sat and read it. It was ultimately a gift for me. A gift that I cherished, the gift of a memory. After losing Bob, I knew there was nothing I could give dad that would really matter. Things are things. They can make us more comfortable and bring us smiles, but many times this can be accomplished in non expensive ways. It was my way of saying that I believed. That I believed in Christmas, that I believed in hope and that I believed in him.

I spend a lot of time believing with all my heart these days. Believing I can try and make a difference. Believing that chemo is going to work. Believing I am on the path I am meant to be on and it is not finished quite yet.

It has been a year of loss. My mom's health has not been great and she's had to make some tough choices this year. Some choices were out of her control- as many end up being for us. Sometimes it's hard not to get bitter when this happens, yet sometimes it makes the path clearer.  My mom is at a point in her life where she needs to be around family- both emotionally and physically. And we, being the bulk of her family are on a pricey island in the middle of the pacific. On paper it seems like a perfect retirement- yet rationally - living in paradise comes at many costs.  The other option for her was to move near her brothers, which put her further from us- but nearer support. And then just weeks away from her big move- we find out that my aunt has pancreatic cancer and that my cancer has metastasized.  There is nothing like cancer to put your life in perspective.

Just like that, there is nothing more important than family and yet neither one of us is in any position to help or care for the other. These are the times when tough calls are made and you just have to get through. So I stopped in Denver to see her, so she could see that I was Ok. So I could see that she was Ok. I can't imagine the sense of loss she has been feeling for so long.  I can't believe where we are. It wasn't supposed to be like this.  Yet here it is and this is what it is. So you pick up the pieces that mean the most and you move on. Sometimes all you can carry with you are memories.

This Christmas was hard, knowing she was going through so many changes and I couldn't help. Stupid cancer. This was the year we talked about going home for the holidays. Yet suddenly we were in no position to make that happen. Then it hit me, home wasn't really there anymore. And yet I had my littlest elves looking for reindeer in the sky and surrounding me in belief. I have to believe we are all on this path for a reason and everything will work out. They were there reminding me of my purpose. I remember when we moved to Colorado- how we hated it at first. We had known no home but Ohio. And then Colorado became the only home we could imagine. And to think it's been 15 years since I've lived there, but I still think of it as home. And I think what makes it home are the memories.  And so when my kids asked what I wanted for Christmas- that is what I wanted. I didn't want them to remember it as the year mom was sick. I wanted to give them happy Memories. Memories for them. Memories for me- so when the road gets rough- they can believe it will be Ok because they will remember- it was OK. I think we succeeded. We went to the Nutcracker, and to see Elf and did the Jingle Rock run through the town lights. I watched the girls perform Christmas songs and sing with residents of a retirement community.  I helped my son give to the Angel Tree. We made cookies and visited with friends but most importantly we made memories. 

A Grinchy Cancer Kinda Christmas

My cousin recently talked about how much she dislikes all things Christmas and at first I was stunned. But then I sat back and thought about it. All she's ever know were cancer kinds of Christmases. For most of us, Christmas spirit is driven by magical memories dusted throughout our past. We would have Christmas Eve at Grandma Connolly's- opening presents in rooms filled with raucous laughter and cheer, tables lined with food-oh how we'd feast, feast, feast. Drafty cold sneaking in under the front door as we laid on the floor full and happy, trying out our new goods. The TV or radio blaring- elevating the volume of the entire festivity. Oh the Noise noise noise.

The first cancer Christmas- was long before I was born. My dad was only 8- and his family celebrated just months after losing their patriarch. My first cancer Christmas- you could feel the change in the atmosphere- the adults talked in hushed whispers about whether or not they should take my aunt to the hospital against her wishes. I was 10. She sat in the recliner, a shadow of her animated personality. She was always the first to play with us- emptying the cabinets, upending chairs so we could play grocery store. She always made the onion dip. And hated to waste food. She knew social convention dictated that no one take the last piece of food so she would cut the last piece in half and when someone would take it- she would cut the last piece in half until the remaining piece was a crumb much too small for other who's mouses. But as a child- the magic still swirled for I did not know that would be our last Christmas together.

It was shortly after that my cousin lost her Christmas magic- I think she was much too young to even remember it. I always loved Christmas- liked it a whole lot- but my poor cousin she did not like Christmas no, she did not. Her Christmas memories tainted with being shuffled from house to house while her brother or mother were in the hospital and late nights on the couch- trying to find the magic with a brother who felt like a seasick crocodile. Those are Cancer kinda Christmases- knowing nothing material could ever take the place of those memories and yet those memories are like a house full of unwashed socks, those memories are full of gunk. Cancer Kind of Christmases- stink, stank, stunk.

And yet you never know if that Christmas will be the last, so somehow you muddle through. A few years later- I was the the one shuffling from house to house- my brother the one feeling all grinchy. The cold tends to surround you- it comes from within. Not knowing what gift to give when the only gift you want is more time. We used to lay under the tree and watch the lights twinkle off the ornaments. We'd bundle up and drive around looking at Christmas lights. We decorated cookies- had Christmas programs. Yet somewhere between that first cancer Christmas and this one- you learn to forget. You choose the happy memories and stuff the rest up the chimbley. And you puzzle and puzzle til your puzzler is sore at how those memories used to be so much more.

The year my dad was sick came as a shock. We had done this drill before. I knew where that train was heading and I did not like it one little bit. Yet my dad would smile and make some crazy joke and get some awful, wonderful idea and we'd end up hours away looking for a tree in some forest. It had to be the biggest. It had to be the best. And when we found it- I would sit in the back of the van, making sure the emblem of our Christmas spirit did not end up dumped on the road somewhere. And somehow it survived and spent the next 2 weeks being attacked repeatedly by our cat. Nightly we would hear the  jingle of ornaments and moments later the crash of the tree. And we would ask her- why are you attacking our christmas tree, why? I think dad finally anchored the thing to the wall. That was the Christmas I knew the gift we all wanted could not be wrapped with ribbons or labeled with tags. The gift we wished for could not be packaged, or boxed, or bagged.

The next Christmas had more holes than we could fill. Yet somehow we went through the motions.  Sometimes you have to pull out the snoof and the fuzzles, the tringlers and trappings! We changed some of the traditions. Sometimes in order to honor a memory- you just have to leave it. You hope that some Christmas your heart won't feel so tight and you wait patiently for the bright morning light. For me that bright morning light was Christmas with my little whos.

When your little who has the grinchies for Christmas- its hard to compare to the years before when you realize you had not a care. I remember just praying that Lily would be home for Christmas and being so exhausted that the thought of buying or wrapping presents would drive me to tears. Yet I did not want them to wake up and to cry boo hoo and I was grateful just to have her in her own bed that night.

It seems every year we adopt a new tradition. I was having a particularly Grinchy day- we had an hour between dropping the girls at a performance and meeting friends for dinner so I asked Bella and Phillip what they wanted to do. Bella wanted to ride the train at the mall with me and Phillip wanted to pick out gifts for a child on the Angel Tree. In my rush to get everyone every where- I had forgotten that we do the Angel Tree every year. It was in that moment that I felt the spirit of giving from my child and I think my heart grew 3 sizes.

Of course this year the Grinch is watching our who family closely with a sour grinchy frown.  I smile and spend time driving all over town. And they sing sing sing sing. These memories are the ones I want them to cherish, for they are magic to me. For this year we have hands to grasp. So I will get up at 3am with Lily and watch Once Upon a Christmas because she is so excited she just can't wait. And I will stop for a second and let Bella measure my wrist for the 30th time for a Christmas present she is trying to make. And I will let Kiera help wrap- which normally drives me insane- but she does a good job even if it's all left handed. And we will make the teenager watch movies with us- because although he hates it now- I know he will appreciate it later. And I know Christmas will come whether I find the right package or present because the present is now and we are all in it.

Season of Gifts

It's not that I don't have a lot to say, it's just that there is so much more to do and so little energy left at the end of the day. Or dinner time. Sometimes by noon. Or 7 am. Sometimes at 6 am I go back to bed. Somedays I feel good. And by good- I mean I extend my radius away from a bathroom by many yards. Then on these days I tend to overdo it. The following days are tough. But I can not complain. I expected so much worse and I know how bad it can get so I am choosing to enjoy the not so awfulness of it.

People say the damnedest things to you. I know there are books and blogs and lists devoted entirely to the subject of stupid sh!$ people say to you when you have cancer. I have had the honor of  hearing some doozies lately and continue to let it roll off my slightly stubbled bald head.  I think I will make a checklist and send it out to my friends and family- maybe a bingo card. Perhaps the prize will be an extra hour of hydration at the chemo bay or an extra dose of zofran. If you impress me- maybe some ativan. The past week was filled with running around and thankfully feeling ok to do it. Not only preparing for Thanksgiving, Phil's birthday but Christmas as well because I never know when my feeling ok luck will run out.

My mailman honks when he has a package to drop off. I have been doing a lot of online shopping.  A couple days ago was the first time I ventured out to grab the package. I don't wear wigs or hats or anything around the house. More often than not I forget them when I go out. If it's sunny, I try to remember- it would be my luck to get skin cancer on my cranium. The mailman looks at me agape- Did you cut your hair for a reason? Now mind you- I love our mailman- he is a sweet man who generally walks packages to the back door if I don't answer the honk. SO I tell him, I cut it because I am going through chemo and it was falling out. So you're in remission then? No I am in chemo. PEOPLE!! REMISSION means no evidence of disease. It's gone, they don't see it-nada, zilch, zero. It means all signs and symptoms of cancer have disappeared. Remission is a feely buzz word that people want to use with cancer because cancer is scary and means pain and suffering. When someone is standing before you bald- they are not in remission. People who have actually had or lived with cancer fear the word remission - it may as well be called the condition that must not be named for letting it part your lips may bait the nasty cancer gods to spite you.

Later that afternoon- I run to Safeway to get items needed for upcoming feast of Thanksgiving. A woman literally is chasing after me- which is quite amusing considering my pace is snailish at best. What treatment are you on? She asks as she steps in front of my cart. Herceptin, Pertuzumab and Abraxane I tell her. Because apparently a bald head is like a pregnant Belly- your biology becomes fair game for chit chat. No. what NUMBER? she chides me. I sigh. Two. I've only had two. Oh don't worry, it will grow back in! She cheers and starts running her fingers through her short red hair- mine came in gray though. Because that was what I was worried about- not how I'm going to find the effort to make thanksgiving side dishes while piecing together tutus for a drama fundraiser, while wondering what I could possibly get my better but not balder other half for his birthday while online shopping to make sure Christmas is merry and jolly here. Oh Don't worry- it should normalize- I cheer back- My daughter's came back in platinum after her chemo when she was 3, but its dark brown now. That's what my doctor said too and she bolts for the wine aisle. That reminds me- I need wine. But I'll come back for it.

Thanksgiving was amazing with many thanks to my sister and brother in law. I think we are all relishing in the availability and choas of family. It's a luxury we don't often have and really we are so grateful. I made 3 side dishes for dinner and it took me as long as the entire dinner usually does. The best way I can describe it it my brain seems to be wrapped in bubble wrap. I'm a little spacey, a little foggy and my memory is crap. Add on the shakes and minor peripheral neuropathy(when your nerves go on strike due to chemo) - cooking presents a few new challenges. The other night for Phil's birthday we had trebuchet gorgonzola stuffed mushrooms. I prepared everything without even until taking them out of the oven when they became steaming little missiles due to an inapporopriately timed muscle weakeness something or other episode. Fortunately no chemo patients or children were harmed in the making of the birthday dinner or dessert. But for the record- when trying to recreate a yummy butterscotch pudding- egg nog is not a good substitute for whole milk.

Priorities have shifted in this house again. And we lead a pretty centered existence. We don't take each other or time for granted and we do let the occasional little thing get our goat- but all in all we try to do our best. Usually I wait to put up Xmas decorations until after Phil's birthday. Yet on his birthday, he wakes up and says- lets do the tree today. And I say- our tree is puny and all of our glamorous mounds of ornaments won't fit. So he says to throw on clothes- we'll go get a tree. And we stop at Kmart because sometimes I luck out there- because everyone goes to Target or Walmart.  They had trees 50% off.  Our luck isn't always so good- so we snatched that tree and brought her home. And that is how amazing my guy is. For his birthday- he wanted me to be happy. And really what can you give a wookie when he already has a comb? Football and Beer. And a wife who smiles everytime she sees the shiny new tree, with room for this year's new ornaments. He is right- when mom is happy, everyone is happy.


Weekends are packed from now until Christmas with work, performances and obligations and a smattering of fun. Every year I say I'm going to take the girls to the Nutcracker and fortunately this year, one of our drama friends is in a production at her school. Check. We have yet to make it down town for the Christmas lights- so when a friend started a group to do the Jingle Rock Run to benefit Make a Wish- yep I signed us up.  Because a week after chemo #3 sounds like a good time as any to do a 5k. It's now or never. I'm not running. Unless there's a fire downtown in the middle of the Jingle Rock Run or immediate child endangerment, but hopefully we will see the lights while giving back to one of our favorite organizations. So check. And check it out if you are interested!! You can Pledge any one of our Mallory clan...we'll all be there! Jingle Rock Run 2013
Lily Mallory Jingle Rock Run Pledge Page
Jen Mallory Jingle Rock Run Pledge Page


Another friend is in a performance of Elf downtown- can.not. miss that!  Holy theatre fun. I have to say I'm enjoying it- and other than the driving to town and potential crowds of people- sitting and watching performances is just my speed. The activity of that alone wipes me out.  Phil keeps asking me what I want for Christmas. What I want can't be wrapped unless it's those arms around me for a long long time. It seems ridiculous to ask for things. All I want is memories and to share them with my monkeys for a long time to come, so far we are making good progress on that!

Monday the 9th is Round 3 of Chemo. It is time to talk scans to see if it's working. I'm hopeful. I feel good, my cough has gone away and the aches and pains have decreased.  We talked about 6 rounds of chemo, yet it seems to be that if it's working there could be more. An infinite number. It's not appealing yet at the same time so much more appealing than the alternative. It's all about perspective. I'm trying to keep mine. And with the hustle and bustle of the season- I have constant reminders of the gifts I have been given- the gifts that I want and the gifts I hope to share for years to come.

Round 2- Monkey Business and Special Gifts

I feel like I should have a scantily clad woman prancing around with a card.  In the old chemo days- it was half naked Lily- tossing the purple robe to the ground and dancing around the chemo ring in tap shoes.

Cancer is cumulative in every way. In a Li Fraumeni Syndrome family- you can't even imagine the worries on multiple levels for many family members. While I was undergoing a lung biopsy- I had 2 cousins going through the cancer drill too. One has been diagnosed with early stage breast cancer.  I have a non LFS aunt battling pancreatic cancer and who is on abraxane too. We compare side effects like most people compare wines. We do a little of that too, sheerly for coping with side effects, of course. I wouldn't even consider a wig until we had an early 3am text session. She had started her wig collection and gave me the name of an online shop. (PaulaYoung.com- fabulous prices variety and quality BTW!) I think she wasn't even considering shaving her head until that chat session. Yet as much as I hate that cancer brings us together in this way- that's what families are for- they share the same gene pool or are associated by marriage and you stick together.Then there are the friends who are with you in experience and spirit who send you lots of happys to make the journey more comfortable and fun.

The up side to going to chemo early in the day, is not waiting long in the waiting room. The down side is traffic. Yet I have very special friends D'ana and Courtney who keep me in theme chemo socks- and Chemo 2's theme was Monkey Business.  This is a true gift from experience and most people would say- socks in Hawaii? Well I wear slippahs to the hospital and it's like below 30 in the chemo bay- so the snugglier, the better. Phil always offers to put them on- and for a second I feel like Cinderella- if Cinderella had to get chemo- she would totally rock monkey socks.


We get to Tripler and work our way back to Medical specialties. It's ironically next to OB/Gyn . Or poetic, I'm not sure. I'd be lying if I said it didn't sting a bit passing excited pregnant couples on my way out of chemo or into chemo. But then I remember how fun pregnancy was(there's that cancer induced previous pain relativity scale at work) and the four not so little monkeys who keep me entertained and I am grateful for my blessings.  I also recognize a couple of the regulars in the bay from last time. A chatty couple who talks to the pregnant lady- probably another person who feels a little bit of the sting passing other pregnant couples on her way to the chemo bay. Her body is trying to fight off the lil monkey inside of her so she is on weekly immunoglobulin drips.

Phil and I get settled, I don't land one of the nice heated seats but I have a warm hat from my friend Jen to keep me cuddly.  I get out my ipod and special compass my friend Cara made me to keep me centered and guided and to know wherever I am there's always a mutant there with me in spirit. I'm not very entertaining in Chemo. Everyone keeps telling me to slow down and use my energy to fight cancer- so I do that in the Chemo Bay. Phil's gift to me is to sit there and every so often channel some positive energy my way and catch up on Sports Illustrated. My friend Linda sent me a library of meditation cds- I threw them on my ipod and I do healing visualization. Deep breath in, blow the glitter out.

Then things got hopping in the chemo bay. We were waiting on my bloodwork to come back to determine if I could get chemo(it did, eventually, I could..) . A lady bopped in for her final chemo. With her 2 girlfriends. After a round of applause, another lady walked in, carefully guided by her husband who looked like he could use some holding up himself. She was obviously not doing well. This instigated overly excited final chemo lady to launch into a diatribe about how her husband had to go- that chemo was much more fun with girlfriends. Apparently we are on different chemo plans- mine is about killing cancer and if there is fun along the way- yippee- telling a lady who is about to puke for the probably 8th time that morning to sideline the husband- not my favorite plan. I think a heavy dose of zofran and a chaser of phenergan might be that poor woman's idea of a good time. Sick lady decides to jump across the bay- further from party central the first chance she got. I know they would have put her in the quiet area in back if they could- but that was taken up by a neutropenic lady(low blood counts- very susceptible to infection).  Like I said busy day in the bay.

I turned my volume way up, again and Phil took a coffee break. He would have brought it back but is a frequent flyer in chemo world and considerate and worried the smell might bother someone. It could have but the smell would have had to get past the stank peppy and her entourage were making with loud final chemo gift giving and video of every step and drop and then launched into a very long story about someone at work who didn't get it and was incompetent. Not only do we live on an island, we are getting treatment at a military facility on an island. I look at Phil and he shrugs- mind you I am hearing all this over my Healing waterfall guided healing imagery- or trying to. He knows everyone they are talking about. It's a small world, you always have to mind your words. A good lesson in the chemo bay and in life. Especially when sick lady is very very sick and the husband is there by her side holding the basin and rubbing her back.  Then at least there was quiet.

Don't get me wrong- I'm all for fun and games.  Chemo is a long and tough process and no one's ever in the same place. You do what you gotta do- as long as you understand the person next to you might be very sick and may never get a chance at "last chemo day" and when they do that day is going to look a lot different.

Shortly after that we got what I hear is a pretty rare treat-snacks- some great folks from UH brought in spinach wraps and desserts. Food in the chemo bay can be distastrous- but from what I understand most centers have snacks and such available, not so at TAMC. So next time you are frustrated over where your tax dollars go- you can be sure that although I'm pretty good at pushing for the good expensive meds- there aren't a lot of frills to go with it at an army medical center. A trade off in my opinion that is well worth it- not too much of a frilly girl anyway.


 Rounding out the Round 2 of Chemo was the addition of a newbie- brought in for blood work. That person was me just a few weeks ago. I still don't know my way around and I'd like to keep it that way- but her tell tale terrified deer in headlights eyes made me want to drag my IV pole over there and wrap her in a great big hug. The nurses there are great and sit down and go over a lot. Yet had I not already had extensive knowledge of cancer and chemo- I would feel pretty alone in that crowded room of varying stages of chemo-ick listening to the side effect trail and glancing around to see the reality. I wanted to introduce myself and give her my number. But she was still in the throes of chemo 101 when I got unplugged and my bone juice shot(which means no trip in next week unless I'm sick!!). But it looks like she will be taking peppy's place in monday chemo bay fray- maybe next time I'll try to remember to take an extra pair of socks. Sometimes just a little thoughtfulness and a small thing can keep you warm in a lot of ways. Many hugs to those who send special gifts whether they be mailed or sent on prayer wings. I appreciate them all.

Hair Trouble with Tribbles

Chemo does a lot of fun things to your body. One of THE most dreaded is hair loss. I've watched this side effect wreak it's physical and emotional havoc on many many loved ones and friends. It sucks. It sucks when you walk into walmart with a bald 4 year old and the looks of pity, the looks of despair, the looks of saddness.  Even more so are the looks from your loved ones, their despair and saddness when the person losing the hair- is you.

I was not afraid to lose my hair. I know women who have turned down chemo for no more than that reason alone. It's hair- it grows back.  All it needs is the right environment and time. Sometimes in order to get a plant to bloom it's best flowers- you have to dead head it. It then is forced to channel all of it's energy into growing roots instead of the pretty but temporary blooms. So although for a time the plant may be bare- once it's roots have latched on- the new flowers will be better, bigger and healthier.  Chemo is a form of dead heading.

It's not fun. The hair loss doesn't hurt, but my scalp was tender- like a sunburn. Hair usually starts thinning 3 weeks after chemo with any drug that causes hair loss. Last week mine started coming out in bunches. Bella would grab handfuls every time she walked by.  Gifted some crappy genes- I also got good, thick hair genes.

I took a shower and there was a tribble in the bottom of the tub. It was hideous. It was an obsessive compulsive nightmare. Anyone who's ever lived around girls- knows the shower drain issue is a huge point of contention. We shed.  The mass evacuation started.  The kids were having a tough time dealing, so I offered to let them cut it. Bella was the only one excited. Of course- the day of my first chemo she expected my hair to be gone, even adults have a tough time with the process- I had to explain to her it would take time. I knew one thing- I didn't want to battle it. It was going to happen and I wasn't gonna let it linger miserably with Donald Trump denial.

So after avoiding showers and watching the wisps of hair spiral around the bathroom while trying to dry it, I had enough. My friend Lani found a salon here, Salon808 whose owner Henry donates and styles wigs for cancer patients. She hesitated- the catch is they need to shave your head so the wig will fit right. No problem- I had already promised Bella she could do that. I asked her to call and  make an appointment and that would be our deadline. Thursday it was. The problem was getting Phil and Phillip and Lily on board. My friend Debbie was on call to share in the night and was kind enough to take pictures-all photos from here on out are with heartfelt thanks to Debbie Leanne who continues to bless me with her friendship, quick wit and photography skills despite throwing her into cramped spaces with poor lighting conditions. But there was wine...of course she brought that too.

Phil's faced much adversity in his life and most people have no idea. His compassion and no nonsense attitude was cultivated out of years of necessity. I hate that this cancer bullshit is bullshit and in anyway a part of his life. I could not and would not be the person I am without him beside me and I know he feels the same way. The hair is symbolic of the sickness and how much it is threatening our happily ever after. I get that. But I am a picker- I rip scabs right off and this one had to go. The deadline was key- for as much as he dreaded being a part of this major moment, he would never ever miss it. Although he did drag his feet plenty.

Debbie beat him to the house with treats and appropriately themed wine! Like I said- she's a keeper.

I texted my sister in law. Another amazing and selfless soul- to be at our beck and call while caring for 2 babies and still trying to get settled while her husband travels. But I knew my nephews were a necessary part of the distraction for both Phil and Phillip. Hopefully they won't feel compelled to cut off everyone's hair from here on out.

Lily requested to cut my ponytail off. If we had waited a day or two longer- there wouldn't have been one! Clumps of hair pulled out every time she tried to grab on. Someday I will read to her about Sisyphus and she will get it. She probably would anyhow.

Kiera wanted to stylistically cut my hair. A wedgy bob like hers.  She took her time and actually proved to be fairly skillful. I've had worse haircuts at supercuts.

Bella couldn't wait to shave it off, but kept herself busy collecting every bit of hair as it fell.

Well- this fuzzy picture was mine...won't let Debbie take the fall for this one.....

Phillip wanted no part of it. We coerced him into cutting a piece. I think I've shaved leg hairs that were longer than what he managed.















We tried a Miley Cyrus do...

And a flat top.....

And finally the full monty.....which is when it hit Lily.

But this is part of the process. I want my kids to know I face it head on. It's Ok if they want to do something different, but they are a part of me and therefore a huge part of this. Hair is temporary. I didn't break. Was it hard- sure. I know it was a zillion times harder on them.  Do I want to keep this look- not really. But without boobs and without hair- sometimes people are forced to look you in the eyes or look away- then you can really find out who needs to be in your life without all the pretenses. It's a lesson I would have much rather taught my kids over hot cocoa and a broken heart or a friendly spat, but you play with the cards you are dealt. And the ones that matter will make the journey with you, even if it's uncomfortable.

And in the end you also find out Bella never really wanted to shave your head- she just wanted a Tribble.

iPicture HOPE with Debbie LeAnne and Brenda Van

Debbie LeAnne Photography

There comes a time in life when you want something. And as usually happens in the grand scheme of things, what you want is trumped by what you need at the time. 

What I wanted was a family photo before I looked sick. Before the hair falls out. Before I look like a period in our lives that was tough but we got through. Before the temporary pain, I wanted a more tangible memory of the way it was. The way to look forward to again.

But there were too many appointments. There were biopsies. Treatment plans to be made.  In the back of my mind, we've never had a professional family photo. It wasn't going to happen, something had to give. 

I have been lucky in love. I have been gifted with amazing friends. I hold fast to the view that things generally work out, you just have to hang in there.  

Then my friend Sharon messaged me. Their family photographer and friend gives a free photo session to a woman with breast cancer in the Month of October and she hoped I didn't mind, but I was on her mind and she forwarded my blog to Debbie LeAnne, who absolutely wanted to photograph me. I must have read that wrong...yet before I knew it I had arranged a date to go over ideas. Debbie and I chatted, I learned about her amazing work and concept- she captures real moments. I like that. That's what I am about. The photo session would be part of a program called iPicture HOPE, started by a photographer named Camille Denae when her mother was diagnosed with breast cancer.  It is a way for photographers to use their work to not only help women who are ravaged by disease feel beautiful, but a way to capture the strength behind the women while raising awareness for Breast Cancer.

As I started to stress about outfits and wrangling kids, Debbie put me at ease. She assured me- hair and make up would be taken care of and would it be ok if another photographer captured video of a day in the life of the mayhem that is the Mallory's.  The only thing more terrifying to me than being in front of a camera is being in front of one that captures video. Yet as I sat with Debbie, I genuinely liked her, I trusted her and knew before me was a once in a lifetime opportunity. It's funny how cancer changes your perspective.  

I barely had time to stress about details when the morning of the shoot rolled around. Scone Sunday has been a tradition for years and Brenda Van showed up early to capture it. What is not on film would be me and Phil shoving months worth of crap around the house into baskets and tucking it in Phillip's room right before we welcomed her into our home. Usually I would throw it in our room- but there was no time.  Like Debbie, Brenda is someone I would choose to be friends with. Talented, beautiful, and very much real. I marveled at the forces at work that brought these women into my life and felt immensely grateful.  We prepared scones, played games, read books and captured memories. Not a bit the screaming photo shoots I envisioned- trying to get everyone to smile and look natural while feeling completely fish out of water.  It was like a friend(with a very very large lens) was hanging out with us.  We ended the morning sequestered upstairs, while I read letters to the kids. Pretty glad I chose Phillips room for the baskets O crap.  I knew this was going to be the toughest part. Collecting the thoughts, putting them on paper and then having to read them. We teared up together, although Brenda might just have been mortified at the clutter surrounding her.

Later that day, Debbie and Sheena E arrived to begin the transformation.  As Sheena plugged in multiple irons, and laid out various palattes of shelac, I knew I was in good hands. Hands I found out that were personally requested to travel with Mrs. Hawaii to the Mrs. America pageant.  I would have to say Mrs. Hawaii probably presented a lot less of a challenge than what sat before Miss Sheena E- but she had lots of magic in her little black bag combined with a whole lot of skill. That and she skillfully navigated child after child who presented themselves with weird requests- just to get closer to the action.  So when she asked how I felt about eyelashes- I said I generally like them and promptly looked to Debbie who said- go for it. Mind you my professional make up experience has included one trip to a make up counter at a department store for a friend's wedding.  I was not disappointed. Although I will never be the type to spend an hour plus or minus another hour a day perfecting the look she created- it was a lot of fun to have the experience and to get to be flawless even if for a little while. 

Debbie LeAnne Photography

We packed into the van and headed to Koolina. One of our favorite spots. A spot dear to out hearts. A spot where we've had romantic walks, anniversaries, birthdays, staycations. The place we detoured to the night before my mastectomy so we could watch the sunset together one last time while I was whole.  So it had to be Koolina. 

Debbie LeAnne Photography

We grabbed some family shots and some candids then ventured out to the rocks.  The ladies called the kids away and we posed.  There we were, on our own little rock island watching the sunset and we giggled and forgot there was anyone else there. And we danced. Because sometimes when you are with your one true love, all else falls away if only for a moment. In that moment is a beautiful memory and the goddesses of film so expertly captured it. And the entire shoot felt like a trip to the beach- it was natural, it was fun and it was delightfully chaotic- which is us. And the only thing more valuable than the perfect family picture are the pictures that capture a family perfectly. Debbie LeAnne and Brenda Van gave us more than I could ever have imagined and for them I will always be grateful. Below are their inspiring finished products. 

Debbie Leanne iPicture Hope Jen

Brenda Van video

Debbie LeAnne Photography

Debbie LeAnne Photography

Just the Way we Are

There is nothing that can make you appreciate feeling Ok like a few days of feeling crappy. So last week when Lily came home with a reminder about her school art project, I knew if I had any energy at all- we would have to accomplish it Sunday.

School projects always come home with the clause- you can help your child, but make sure it is their own work. I really think it's payback from teachers for all the shenanigans they have to put up with throughout the year. Projects always give me a healthy reality check of why I am not a teacher and how little patience I really have. Sandwich that with a dose or two of chemo and questionable GI issues- time and patience are a bit on short supply altogether.

Lily has been excited about the project- it could be any element or materials. It will shock you to know that Lily chose performance art. She never quite got over not being able to sing AND dance for the talent show last year- she began fixating on her project. Lily is nothing if not prepared and idealistic. Every day on the way home from school she would tell me how it was going to go down- Phillip would play the piano, Kiera would sing back up and dance and well, Bella could dance too.  I kinda wondered if we were all in for it.

Sunday morning rolls around and it's crunch time. The project is due this week and if we don't get it done now- well the chances of it getting done at all will dwindle.  Lily is adamant she has the choreography in her mind.  She begins showing Bella and Kiera their moves. It reminds me of childhood- dancing around the living room with Melissa- big plans for talent shows which would lead ultimately to fame and marriage to Superman 1 and Superman 2. Because in the 80's we were best friends and Superman was the most eligible bachelor, we shared everything and well cloning seemed to be an entirely plausible solution. Our claim to fame- word by word miming of Madonna's hits. As I watched Lily point to her face and hair repeatedly, Kiera grew frustrated with the lack of variety in the routine. Her constructive criticism was not well received. Bella jumped ship because she really has the attention span of a fruit fly when it comes to performance art. I separate the girls and ask Kiera to print out the lyrics while I talk to Lily.

Lily has a fantastical image of what her production is in her head. I tell her, I am going to video her so she can see what the moves are- because they seem to change from moment to moment. If she wants Kiera to dance with her, she has to be able to teach her the moves and be consistent. Lily is consistent. She likes order and routine. The calendar is her compass. The only area where Lily is unrestrained, wild and completely spontenuous is in her dancing. Girlfriend can feel some dance.

We run through several verses and I write down the moves- in dance illiterate mommy shorthand. Kiera spews things at me like that's called a ball change and this is this and that is that while Lily and I wear the same slightly amused yet uncomprehending expression. They run through it. They run through it again. and again. Lily keeps changing her mind. Kiera is about to lose her mind. I wonder what the hell we are doing. We have gone from full out Partridge Family dance special to just Kiera and Lily, no singing- just dancing and the collective hairs have been pulled out. We have been at it for 3 hours and I still have to video it and somehow manage to get it onto a DVD for her to take in to school. Kiera keeps telling her she can't just do this or that or change it. Lily is in tears. Kiera is frustrated. I am stressed to the point of coughing fits. Bella is drawn to the train wreck occurring and keeps putting herself underfoot.  All the while Bruno Mars keeps crooning,  Just the way you are, just the way you aaaaaaare. Just the way you are.  Dang we are doing it wrong.

I call Lily over. What is the point of this project? To show an art form. And why do we do art? To show feelings and find our happy place. Are you happy? NO.  I want to try something. I want her to just dance. JUST. DANCE. I will record it. But she just has to have fun and do whatever her body tells her. Then she can rethink choreography. She agrees. And she dances and smiles and giggles. In the end we agreed the best thing was for her to just be her. I love that she loves her family and wants to include everyone. We also know that she is a free dancing spirit and for her project to really be her- right now it can only be her- just the way she is.  She eventually changed out of her pajamas and we did an "official" take- but the first one when she lets loose and just is free is the one that I cherish because sometimes we make it far too hard on ourselves before we can just be the way we are.

Sisterhood of the Travelling Mutants

I  never understood the sorority mentality. The fuss over clothes, hair, secret language, initiations, exclusivity. Until I found my Sisterhood of Travelling Mutants. The initiation is brutal- it is essentially months of cocktails(of the chemo variety) and shaved heads, speaking in code- words like neutropenia, hereditary tumor suppressor malfunction, prophylactic mastectomy or oophorectomy speckled throughout our lexicon.

I never valued the importance of sisterhood until I needed it most. A motley crew we are- scattered about the United States- and even across the oceans. The requirement to join is simple- merely be living with Li Fraumeni Syndrome, no minimum cancers required.

Years ago I joined Facebook while Lily was in Chemo. I did not join as a way to keep in touch with people or get back in touch with people- it was merely to help a friend farm some land to get to the next level. 2 weeks later after calling Phil at work and imploring him to harvest some pumpkins because I had to run errands- he held an intervention. I deleted the app and went about my business. My friend list had grown, putting me in contact with people I hadn't talked to in years. Sometimes this is a good thing. Sometimes.

 I noticed people were in groups and started searching for relevant groups- like Li Fraumeni Syndrome. There was none. So I made one and invited my family. I found the only other support group for LFS on a site called MDJunction and invited them over too. Pretty soon there was a group of people who got it, asking relevant questions and giving amazing advice about how to live with hereditary cancer. Mostly it was just lending an encouraging word after yet another surgery or rough bout of treatment. It was virtual hand holding over fears of scans that could change your life. It is a community of friends. A community of mutants. Some do not like the term mutant, but we wear the badge of distinction with pride. Ours is not the average cancer journey.

Over the years our group has grown. There is an occasional controversial topic, but all in all it is the most supportive, understanding group of humans I have run across and I am honored to be among them, despite the devastating reason we are there. None of us would be who we are without the adversity we've faced.  We have moms who had cancer while pregnant then faced it again with their children. We have moms who have multiple kids going through treatment- at the same time. We have siblings who share the horror of being breast cancer buddies. We have young women making tough decisions about mastectomies since they've already had more cancers than most people's grandparents. We have people who are the last surviving member of their family. We have people who have lived through dozens of cancers and been told multiple times- go home, get your things in order, there is nothing else we can do for you. We have lost friends and mourned with their families.  All of this through a virtual world.

When we heard there was going to be a conference in Boston for our special brand of mutants- the messages started flying. Plans began to take shape. We all know how short life is and opportunities like this are few and far between. I made plans to go solo- gasp! The mere thought of a few days with women who had been my life line through breast cancer and all of Lily's ups and downs was exhilarating. Women I could vent to when well intentioned friends said the wrong thing, again. Women I worried about when their kids had rough patches and scans. Women who could not seem to get a break from cancer after cancer or had to deal with continual medical incompetence. We look out for each other, cheer each other on and most of all handle each other with careful honesty shrouded in sarcasm and laughter.

I had lined up a room for us to crash- true dormitory style. And then the cough hit. Suddenly I needed these women more than anything and the hope of meeting them was flying out of reach. Yet they were the first ones I needed to tell. They were doing research before I even asked. They let me be me when I landed in that scary dark place of "tooma gloom and dooma" and they guided me back out. And they insisted that I go to Boston. I no longer wanted to go without Phil. I no longer felt like I needed the "me" time.  There was going to be another husband there- he actually used to work with f-15s- I knew he and Phil would get a long, it was meant to be. Between appointments and research and decisions- the trip became a beacon of strength. It helped shape the calendar and my mood.

As I walked into the bar at the Inn at Longwood Medical in Boston- I spotted one of my favorite mutants. We were fortunate enough to meet years ago in Maryland and she is like a sister. She tells it like it is, tells you to suck it up and put your big girl panties on but she also will make you laugh so hard you pee in your big girl panties. She will also be the first to call whoever needs to be called to get you an opinion or help. If you can't laugh through this mess, then all you have is mess.  She pulls me towards the table and I know everyone immediately- even though we have never met- we are family. A family brought together by circumstances we can't change. We barely finish hugs when more mutants arrive. It goes on like this for hours. Poor Kevin, Poor,  poor Kevin- a wonderfully nice chemistry major on his 5th day of work waiting tables there had no idea when he showed up that night- a room full of mutants would be his charge. I'm pretty sure he will never be the same- but then again neither will we. None of us chose this, but we live with it- sometimes gracefully- sometimes clumsily- sometimes very very angrily. I'm sitting at a table full of women- 2 husbands sequestering themselves to the end - in awe of us, horrified by our collective candor and trying to catch glimpses of the world series all at the same time. My cousin joins the party and I feel complete. We talk about getting all of our kids together- a merry mini mutant party. It never ever ceases to amaze me how sometimes the most horrible things are the very things that give you what you need. And these women- my sisterhood of travelling mutants give me hope when I am facing a tough journey. They give me socks to warm my feet in the chemo bay- a signed pillow to catch me when I need a rest, a charm with a compass to guide me and know that wherever we are- the others are only a call away. We laughed. We compared scars. We talked about hair and lack of it.  It was the family I've missed all these years. The Mutants took Beantown and I'm pretty sure Boston will never be the same- I know I won't be. And for that I'm grateful for LFS.