Tuesday, November 19, 2013

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.

Friday, November 15, 2013

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.

Tuesday, November 12, 2013

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. 

Monday, November 4, 2013

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.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)