New Side Effects, New Sizes, New Fashion, New Season

Radiation is not fun. Now, on the spectrum of not fun things this year it’s probably not as bad as chemo, but in some ways it’s more insidious than the surgery. With surgery each day was an improvement, now I slide downhill. After surgery, the pain was moderate (when asked what my pain threshold was a friend answered for me – DUDE, she took tylenol a day after her double mastectomy). But, this is uncomfortable, painful, and daily.

I have never had that wonderful skin that bronzes beautifully and glows happily in the sun. I have been blessed with a fair complexion that freckles and burns and makes keloid scars for even a mole removal. Ironic that I thought skin cancer would be my bane. I like my skin in general, but all of a sudden, a curse – red as a lobster on impacted areas, tender from swelling on areas where I would LIKE to wear a support undergarment and rosacea of the face somedays. My doctor proscribed daily rinses – “so it won’t peel” – great, not even a chance of a sun tan after all this? I find myself daydreaming of times naked in one of Davis’ old shirts.

So much has changed – I find shopping therapeutic in ways it never was before. Part of it is I keep trying to find things that flatter my new strange-to-me-shape. I try to find things that work in pixie haircut land. Accentuate the positives, right? Just when I feel like I have a little wardrobe for summer it turns 50 here! I scramble – no pants! Which sweaters? What shirts? I have discovered the magic of tunic shirts and leggings.

I finally took everything out of my closet that I can’t wear right now. It was exhausting but so was the feeling of looking at it every day and wishing I could fit into it again. I’m realistic – there is likely a chance I will, but there’s also a chance I won’t – my five year dosing of tamoxifen may impact my body into fat hoarding.

Regardless I have to say I am thoroughly confused when I do shop – I can figure out what size to get for tops, but is it just me or are the sizes for bottoms crazy? I can’t find something that fits my waist – and my bootie – without falling off my thighs or being two inches too long. I am going to -ack- actually go shopping for jeans and try on different sizes and shapes and models. Does anyone like doing that?

Though I have won the battle against cancer, the war continues – and I want you to remember this. When we are cancer free, we are not always treatment free. When we are done with chemo the hard part is not always over. Hug your survivor friends, love them through and past the first battle because the hits keep on coming., You like your hair – sorry. You like your waist? Cancer will take that too … and forget about the silhouette. How about your metabolism? Mood? Skin sensitivity? Ability to get to sleep? Now I’m left with my sparkling wit and personality. Good thing I have a fantastically supportive husband. Along with adoring friends and family and three amazing children of course.

There it is, the thread back to happy.

And, the news that only 13 more treatments of radiation. 6 of those with the dreaded bolus. In radiation therapy, bolus is a material which has properties equivalent to tissue when irradiated. The bolus is laid on my skin to  increase the skin dose – yup that’s right, to make my skin MORE red. Run cancer baby cells. You cannot hide.

Two steps forward, thirteen new questions

It’s a two week milestone today – two weeks from my bilateral mastectomy for those of you new to the story. Seven months from the mammogram that changed the move to Dubai into a stay and fight … and a week from the cancer free report card.

Today I did 15 things. OK, maybe it was 10 or maybe it was 18, but it was a lot – some seemingly incongruous with normal life (aka buying boobs at Nordstrom’s with my Mom) and some totally normal (grabbing breakfast on the run) and some totally normal but in this new normal somehow special (driving around the block by myself). But the important thing is that it was a list – a big list – and it all happened today. There was a time not that long ago where I dared myself to do one thing a day. To make one extra phone call, to write a blog post, to do just one thing outside of the pure process of living and healing and surviving. How fast things can change.

The oddities start piling up at this stage in the game as well – I am healthy looking and so most people I meet will no doubt believe I purposely chose this haircut, that I look this way physically. Oh how I wish I could tell them.

I have conversations I never thought I would have – just tonight, with my Mom and my husband we had a conversation about when I should put my boobs on in the morning. At Nordstrom’s today, I got my new “forms” – I have a pair for regular use (that sit inside of pockets sewn into my bras) and a swim pair (lighter weight, and able to withstand chlorine – for the Disney cruise and the last few days of summer). The swim forms were a splurge – can you believe that’s what I now call a splurge? But a girls gotta have girls on a cruise.

We showed off my forms – Davis, my Mom, the nanny – they are fascinating (ask if you want to peek). The amount of engineering – lifelike, yet clearly imitation. With wicking components, multiple angles, and yes, even a nipple. They are not real, but they are darn close. In fact, by the end of the day my back hurt – was it from the new weight adjustment?

Anyhow, back to this conversation -about when I need to put on my boobs – and I’m curious about other Moms out there. Clearly, I am not a sight for preschool eyes. unclothed. It’s not like I was parading around naked before, but occasionally Emmy would dress me. Now I have a reluctance to even get out of bed when she’s around in the morning – and she always is – hugging me, loving me. In this totally odd conversation, we decided that as long as no one sees me without my shirt on we should be OK. It’s only six months.

Those of you who think I am brave consider this – each day I grow stronger. I think of putting on my bathrobe each night after these glorious showers and the effort it takes and how it gets easier each day. I think of men and women for whom things get harder each day, and yet they keep pushing ahead. I am reading about WWII and am thinking about the sacrifices so many made for us – for our lives – and how people still do. I think that is bravery. I am just dealing with the hand I was dealt.

In the motherhood column, we are working hard on the settling in of routines – Carter cried when I dropped him off today great big gulping blue eyes brimming. His teacher emailed that within minutes he was fine. Henry is pleased as punch with his teacher’s record card system – each good day we put the card in a jar on the table. What he wanted most for his birthday was unveiled today – a rolling office chair for his room with up and down. They spent two hours putting it together and testing it out. I got it at Costco for $60 and it’s red vinyl and he thinks it’s manna from heaven. Next year he might ask for a cubicle. Emmy drew a diagram of the chair with actual anatomical detail and arrows indicating all its features.

I stand in wonder of my children, of our journey, but most of all of our help. I sit in jammies donated by my friend Sara (they are just TOO stinking cute I hear her say. We enjoyed a meal brought by a Doss family, and accepted a bottle of wine from our new neighbors. I look at my new earrings and think of my friend Jessica, my card today in the mail and think of my sister-in-law.

What you don’t know is that with each act you have given me strength. I will pass it along. Maybe tomorrow – I probably have at least 16 things I can do.

Priorities and Fashion with Drains

Yesterday I waited with baited breath for 5pm to arrive. It had nothing to do with me, with cancer, with chemo or medicine. It was the time when the class lists would be posted for Henry’s first grade. We rapidly scanned all the names and found two buddies (which is really what Henry cares about). Our teacher is new which should be good fun. I was more excited and amazed and hysterical about this placement than I was about my surgery. I guess that means that the Mom in me is coming back.

My body is also coming back – in both good and bad ways. I have been surprised by my recovery – I take advil a few times a day, and I’m sore really only under my left armpit – where they took the nodes. I haven’t been able to shower because my doctor doesn’t want water to get in … but I am waiting for that with full anticipation. My plan still stands – radiation to start in a few weeks, for about six weeks, and then reconstruction in 2013.

But in general, I fully anticipate a return to life sooner than I would have expected. It may be at a slower pace, but I am looking forward to becoming an owner of my own body. I feel that this has been a gift to me – If I hadn’t gone in for that just in case mammogram, who knows?

And, in a bit of looking forward, I am starting to accumulate a wish list for fall items – my size may not be right, but surely I deserve a little pampering. Dressing right now is a bit of a drag – I am wearing a camisole from Nordtrom’s that provides a little support. But, my doctor didn’t want my drains in it since it is compressing me a bit (the drains act on suction) … so I wear that cami, then a pair of jammies or a tank top long enough to hide my drains and put pockets in the shirts (they are called pink pockets. It limits my options, and I also want to make sure that the children don’t see it – they would be mortified. There is a limit to complete transparency.

If you see me out and about tomorrow (meet the teacher for all three children at different times) you can note my casual chic pixie cut (that really is just my hair growing back!) and hopefully not my drains. Feel free to tell me if they are showing – I’d hate to go around unzipped all day. XYDPDQ.

Another Reason to Love Nordstrom’s

I have had assistance in unexpected places the past few weeks. In addition to friends, family, doctors and awesomely supportive survivors there have been two unusual standouts – my insurance and Nordstrom’s.

First, Aetna. We grumble greatly about health care in America – in truth it is more of a “sick care” system that we all must endure when we are unhealthy, already in the weeds. I have experienced what life would be like with a preventative element – a caring, supportive system that would see you through your goals and assist you when you did touch your toe into the medical arena.

Aetna has provided me with a case manager – a former oncology nurse who calls me each week to check on my progress, assist me with any questions I might have, tell me where I should ask more questions, and let me know how to navigate these uncharted waters. I know to them in some ways I am a sudden aberration in their data – spiking high costs of chemo and procedures. But their response has been compassionate, helpful, and effective. And for that, I thank Aetna.

It was my case manager, Mary Anne, who first brought Nordtrom’s to my attention. Clearly, growing up in San Francisco, I need no introduction. In fact, my girl scout troop did inventory to make extra money. I participated in a fashion show for Brass Plum … and my first prom dress was from the same department. I well remember “my store” as well as the flagship downtown with the circular escalators.

I learned during motherhood of their first commitment to service above and beyond – they measure your children’s feet exactly, assist in special sizing, and of course have the fabulous return policy ( no questions asked, whenever).  When I made my first voyage to a store with Henry in tow I learned of their commitment to nursing mothers – a complete room with comfortable chairs and a special changing station.

Imagine my surprise when Aetna tells me that Nordstrom’s is where I need to shop now – in my time of need, transition, and uncertainty. Mr. Nordstrom’s Mom had breast cancer you see, and ever after has remained vigilant in providing a smooth, supportive environment for supporting survivors. They have special staff members who have been trained in prosthesis and orthodics. They measure you individually for the compression garment post operation, and then will specially fit you for your prosthesis – two little chicken patties that come in a variety of sizes, perkiness, and function.

There are special ones for swimming I learned (you don’t want them to float up and ride on the water) and there are some especially designed for hot weather that have bumps on the side that face skin to allow air movement.

Nordstrom’s will also sew pockets into any garment that you buy there for your ladies to hang out. No charge. The ladies and the garment were covered by insurance.

The assistant was so caring, the fitting was so enjoyable and fun that I went and bought some sassy shoes – red is the hot color and I know have ankle boots. The women in shoes thought I had a purposeful Pat Benatar haircut which is quite stylish. I’m not sold but I did buy the shoes.

Is it weird that I look forward to my follow up visit? There might be some serious shopping.