Dear Educators

Dear Educators,

Thank you for doing what you do.

I write to let you know that it doesn’t take much to change the life of one child. Your impact can be magical. And. I don’t think it takes much.

I know that the easier route is to do things the way you have always done them. That sometimes it’s easier to take the “multiple choice test” approach rather than working to create projects and oral assignments and technology-based learning.

I know that you aren’t always given the tools to recognize different learning styles and how to reach those children. That you aren’t always taught (or incented) to recognize that a child performing at average might need to be challenged more and just because they are OK, doesn’t mean they can’t be great.

I know that you are given an onerous task of readying your students for hours of standardized testing to ensure federal dollars and state-wide rankings. And, I know you probably remember a time when 9 year olds were allowed to do projects and experiments and not have to learn stress management techniques.

But, carry on educators. Even with all that’s allied against you, the life of a student will be and can be changed by your kind words. By your willingness to create a slightly different approach for a kid with processing issues. Or to find a different incentive and punishment structure for a kid with ADHD.

This time last year, my bright, easy going son started winding tightly into a coil of concern. anxiety and disappointment. He was crying about school. Repetitive about assignments being completed (“Mom, did you sign it? Did you sign it?”). Most of all, he was withdrawing from himself and the person that he could be, He ended the year with only two As on a report card that included a C in the area we now know is his specialty. Math. We had to hide the report card as his face, his being, fell when he saw it.

After a year of testing and fighting and wondering and learning, we now know he has dyslexia. We entered the school year with a plan and we we know how to help him. We are doing work on the side – phonemic awareness and repetition to rewire his brain. His teachers are doing work at school to give him the educational experience that he deserves.

They provide him with compliments recognizing that a fragile ego is a common side effect of stress and concern. They create alternate assignments – such as typing the spelling lists in sentences instead of expecting memorization. They have a conversation with him to gauge understanding instead of a multiple choice test. They let him go at his own pace. Require him to write his work in a structured and organized fashion.

And, they have changed his life.

He now is buoyed by the opportunity to go to school. A change in the schedule which would have turned him sideways last year is taken as a momentary blip – as it should be – this year. Most importantly, he thinks he is smart, he loves to learn, and he wants to do more.

He did extra credit for the first time. He reads out loud to his brother and sister at night – from his favorite series, Percy Jackson – he has read all 10 in the series since January. His report card? Straight A’s. Pride.

So take heart, educators. Take the extra time to go a little further, and you can be the one that will turn a kid around. Be a part of family lore. The ones that got it right.

You can get it right for so many.

Survivorship – noun, verb, expletive and blessing.

This year, my Aunt asked me to speak about survivorship at a fundraiser she chairs. They raised $176K for medical research to find a cure for breast cancer.

I was honored to speak, but nervous. This time instead of talking about a fight I had “won” I would be talking about my state of being And it’s not always pretty. And it’s very personal.

Blogging is so much easier.

But, the act of sharing, the idea of educating, is still important. so here you go … my speech. And your education about being a survivor.

I will be honest – before going through this, I didn’t even think survivorship was a noun … merely a state of being done with cancer – like part of a life timeline. Before kids, after kids. Before cancer, after cancer.

But survivorship is much more than a time marker. It is a noun, and a verb, and an adjective … sometimes even an expletive at our house. But, mostly a blessing.

I think about how I must appear to the outside world – those that didn’t know me on my journey. Now, being three years out, a lot of people have no idea when they meet me that there’s anything beneath the surface. I mean, I probably look pretty together.

There are none of the visible markers of cancer or chemo – I have hair – which take it from me, has not always been a given. I have eyelashes and energy.

Because I look fine on the outside, people couldn’t possibly know is the chaos and pain and ups and downs that my family has endured. Life is good. Life looks good. But it is not, nor will it ever be, normal again.

So a quick version of my backstory. I was diagnosed with Stage 3a breast cancer in 2012. I had not done self-exams in years. Between breastfeeding and motherhood, who has the time? I had twin 5 year olds and a 7 year old.

And so what if one lady pointed up and one pointed down – I had nursed three kids, including the twins, for over 6 months. The ladies were tired. Frankly, so was I!

I had passed my annual and GYN doctors’ exams with nothing unusual. But my husband got promoted to an executive position in Dubai, and in advance of our move, my GYN recommended a mammogram “just as a baseline” before we headed overseas. That mammogram saved my life.

My cancer is now gone—three years in August. I had a sum total of 2 years of treatment: six months of fatiguing, balding chemo, a double mastectomy, six weeks of daily radiation, and over a year of reconstructive surgeries.

And, in case you were wondering, you are considered a survivor as soon as you begin battle with breast cancer. That should tell you something.

I often feel like I have this little piece of myself – my survivorship – that I carry with me in my pocket – that others wouldn’t see unless I shared. Kind of like that song about the brownie smile in girl scouts “there’s something in my pocket that I keep it very close to me in a most convenient place?”

Only mine is a survivorship smile, something I keep in there and rub when I’m feeling down or crazy or frustrated. It’s in my pocket – out of general view, something I don’t often share.

To me, it is obvious much has changed. For example, my body is totally different. In order to lower the chance that the cancer will come back, I opted for the double mastectomy. A fun medical term– because I only had cancer on my left side, my mastectomy was considered prophylactic because it was to protect me from a future occurrence. Now that’s probably not what you think of with prophylactic right? A lot more fun things come to mind?

Now, I did get to swap out the bum boob models for perky gelatinous silicone implants. A size of my own choosing? Yes please – let’s go up to a C shall we?

I think we can all agree these implants look good. But, I can’t feel anything on my skin there because the nerve endings are dead after radiation and months of surgeries. I actually find myself running into walls with my boobs just because they are bigger and stick out more than I ever had naturally and because I have no sensation. I have to admit, it’s hard to feel too sexy when you can’t feel whether your bra is on or off.

I was also put on tamoxifen, which is a drug that literally blocks my body’s ability to uptake estrogen. For me, I have had many side effects, but lowering my chance of the cancer coming back from 15% to 8% is worth it.

One common side effect is becoming post menopausal. Now I have been lucky enough to get all of the super fun side effects – night sweats! Weight gain! Insomnia! BUT I still get my monthly visitor. Not cool, science, not cool.

As for those side effects, about three weeks after I went on the drug, I gained 30 pounds. Very quickly. Now it turns out that this coincided with the Christmas holiday – so that number may not be totally fair. After all, I ate my way through an entire block of cream cheese jalapeno dip and about 33 bon bons.

But, my entire body shape has never recovered and it wasn’t just Christmas. I lost some of the weight, but I now have the post-menopausal issue of muffin top. The styles I used to love before no longer can work. This may seem vain, but I used to have a small waist and I loved fit and flare. Belted. Now I alternate between strategic draping and stretchy waist bands and girdles.

To combat this change, I have upped the amount of exercise I get – I think I am fitter than I was before cancer. I play tennis and do barre and yoga or crossfit 4-5 times a week. I have done the diet thing – I went through a phase where I was so restrictive that I didn’t allow myself an alcoholic drink for weeks. As some of you know, with three kids that is no way to live sustainably.

And guess what’s even worse, my belly never got flat, my waist never got trim. I think that could be a second job – all consuming – and still not see what I saw before.

I also have insomnia – worsened when I drink more than one alcoholic drink. Or caffeine after 3pm. And, as a survivor, I have to watch for side effects. But, everything feels like a side effect. Is that a lesion? Or just gas?

Finally, there is chemo brain. Which is actually a medical thing. Whatever poor brain cells I had left over after pregnancies had no chance.

My best analogy is swiss cheese memory. When I can’t remember that person’s name after the fourth time that I’ve met them and they know my name and my family name and have been to my house …. I mean, I showed up to a tennis match a month ago in flip flops and had to run to Wal Mart to get tennis shoes. But yes, I won the match,

And, every time you go to a new doctor or dentists or spa or anything, you will have to fill out that you had cancer on your forms. Yes, I had cancer. Yes I take tamoxifen, yes I had surgery. YES. I now take 6 drugs to sleep, reduce anxiety, keep the cancer from coming back, and function. YES.

At the end of the day, though I am lucky. I am able to choose to take tamoxifen and struggle to have a 50-year old waistline with my 20-year old boobs. I am able to claim survival. To see my kids grow up and be crazy and ask “remember the time when you had no hair Mom?”

Yes, I remember.

I get to muddle through life missing homework assignments and class parent names and driving to the wrong soccer field.

Survivorship does not mean cure. It is a set of side effects and a state of being. It is a glorious wondrous chance at the world again – living without regrets as much as possible and hugging and laughing.

With distance from the soul-crushing fight comes pride. Each time I go over my history, I feel that survivorship ribbon sitting in my pocket. I realize what I did and what I’ve been through and what my family and I accomplished. I try each day to accept the changes to my body and my mind. Knowing they aren’t the end of anything – just differences.

And sometimes, like tonight, I take out that survivorship and put it on like a great big brownie smile. And then I can reflect and remember and rejoice. I get to remember that survivorship is the best possible state of being. It is love and respect. And it is pride. It is life.

Don’t Just think pink, do pink.

Revised and updated from two years ago …

What you should know about breast cancer NOW (because I didn’t know and it almost killed me)

This October will once again be full of the color pink—ribbons, shirts, walks, camo gear, socks and even pepper spray.

Many of you know that in February of 2012 this all became very personal for me. I was diagnosed with Stage 3a breast cancer after a chance mammogram at age 35. I had not done self-exams in years. Between breastfeeding and motherhood, who has the time?

I had passed my annual and physical doctors’ exams with nothing unusual. But my husband got promoted to an executive position in Dubai, and in advance of our move, my GYN recommended a mammogram “just as a baseline” before we headed overseas. That mammogram saved my life.

My cancer is now gone—three years cancer free – and a sum total of 2 years of treatment: six months of fatiguing, balding chemo, a double mastectomy, six weeks of daily radiation, and over a year of reconstructive surgeries.

This year, make your October different. Educate yourself. Know about yourself and this disease. Awareness is only part of the battle. And, based on how much pink is out there, I think we are all aware that breast cancer sucks.

As one of my #lifer friends put it, “We are all AWARE. We are more than pink ribbons and kitschy phrases like “Save the Tatas”. Most of our “Tatas” are in the hazardous waste bin of an operating room, but I still think we are worth saving….”

Bear with me, but a few items you need to know this October:

This isn’t just our mothers’ disease

About 1 in 8 U.S. women (just under 12%) will develop invasive breast cancer over the course of her lifetime. Breast cancer can strike at any age, and breast cancer is the most common cause of death in women aged 35 to 54. The number of young women who are diagnosed with breast cancer is on the rise, with scientists unsure of the cause. Pay attention!

You (probably) know more than your doctor

Diagnosing breast cancer in younger women (classified as those of us under 40) is more difficult because our breast tissue is generally denser than the breast tissue in older women. Whoop whoop! Love that, right? The thing that makes you not sag makes it hard to see through – even with a mammogram. By the time you feel a lump, the cancer often is advanced. In addition, breast cancer in younger women may be aggressive. Mine sure was. And I didn’t even feel a lump.

Many young women who have breast cancer ignore the warning signs—lumps or nipple changes—because they believe they are too young to get breast cancer. Or because they have had changes from pregnancy or nursing. I had things pointing all sorts of directions with irregularity, lack of symmetry, odd changes … and just thought it was my body getting older – and used up! But it is your body and you need to get to know your breasts intimately, regularly, and bring any changes to the attention of your doctor.

Get to know your breasts

In general, regular mammograms are not recommended for women under 40 for the reasons I cited above. But self-exams are a super important tool in discovering breast cancer. Usually, the first noticeable symptom is a lump that feels different from the rest of your breast tissue. More than 80% of breast cancer cases are discovered by touch, by you or your doctor. You need to get to know your breasts in circular motions, horizontal and vertical. And don’t be afraid to palpate deep—many breast cancers are close to the chest wall. Min felt like a Jordan almond up against my ribs. But I didn’t feel it until I saw where the silly bugger was on an MRI.

You also need to feel under your arms—lumps found in lymph nodes located in the armpits can also indicate breast cancer. Other symptoms include asymmetry from left to right in denseness, one breast becoming larger or lower, a nipple changing position or shape or becoming inverted, skin puckering or dimpling, discharge, constant pain in part of the breast or armpit, and swelling beneath the armpit or around the collarbone. If you have any of this—regardless of your age—get to a doctor and discuss it. Don’t think it’s just getting older!

Know your risks and manage what you can

Some of the risk associated with breast cancer is hereditary. A woman’s risk of breast cancer approximately doubles if she has a first-degree relative (mother, sister, and daughter) who has been diagnosed with breast cancer. About 15% of women who get breast cancer have a family member diagnosed with it.

About 5-10% of breast cancers can be linked to gene mutations (abnormal changes) inherited from a mother or father. Mutations of the BRCA1 and BRCA2 genes are the most common. Women with these mutations have up to an 80% risk of developing breast cancer during their lifetime, and they are more likely to be diagnosed at a younger age (before menopause). Talk to a doctor if you have a family history of breast or ovarian cancer to determine if gene testing is right for you.

Clearly, inherited risks you can’t control, but you can acknowledge and respond. And, there are many risks that you can control:

Stay at a healthy weight (having more fat tissue means having higher estrogen levels which JOY increases cancer risk)

Take the stairs. Evidence is growing that exercising regularly deceases your chance of getting many cancers – including breast cancer.

Don’t drink too much! Studies have shown that breast cancer risk increases with the amount of alcohol a woman drinks. Alcohol can limit your liver’s ability to control blood levels of the hormone estrogen, which in turn can increase risk.

Don’t smoke. Smoking is associated with an increase in breast cancer risk. As if you needed another reason.

Learn about Metastatic Breast Cancer

Metastatic breast cancer is the ONLY breast cancer that kills. It means that the cancer has spread beyond your breasts to other areas of your body, and once you have it, you are fighting for life (hence the #lifer term). Over 41,000 die each year from MBC. Of the billions of dollars raised for breast cancer, only 2% goes toward metastatic breast cancer.

Think about where you are giving your funds this October. Here is a list of my favorites based on who spends money on what and how much of the dollars actually go towards helping women, researching a cure, and providing love and support for those in the throes of this battle.

– Metavivor
– Theresa’s Research Foundation
– Noreen Frasier Foundation
– Breast Cancer Resource Center
– Wonders and Worries
– Heal in Comfort
– Little Pink Houses of Hope
– Without Regrets

In all, I feel incredibly blessed in a weird way to have been diagnosed with breast cancer. I was diagnosed early enough to stop it, and have been given the opportunity to demystify the disease to my generation. I never was a pink girl really, but now I’m proud to wear pink ribbons, bracelets, T-shirts, and hats. I have become part of the community that unfortunately grows every year. We are sisters in diagnosis, and hopefully, in survivorship.

Knowing your risks, your breasts, your doctor and your history will help in early detection, the key to survival in breast cancer. Don’t just think pink, do pink.

The Gift and Curse of a Dyslexic Kid

They are called twice exceptional kids – those that are graced with high intelligence and a learning disability. I’m sure you know many. Even if you don’t know who they are. Well, add one to the list: Henry Ward. Gifted dyslexic. Identified at age 9.

I have been loath to post about our experiences in the last year because of sensitivity for my child, loyalty to my school, a sense of failure in myself. But, I know I can’t be the only one that’s dealing with these issues. And, even more important are those students that don’t have an advocate. We need to know that the system is not working …. And if it’s not working for my kid, what about the one downtown with two parents working multiple jobs? What about the kid whose parents feel that the school/teacher/establishment must know best and their gut feeling must be wrong?

This is a long story and I have been aching to tell it. Bear with me.

In September of 2014 I noticed something was off with Henry’s spelling and writing. He had never had problems on spelling tests, but in writing thank you notes he would jot down four or five words – three of which were misspelled. Including the word “from” (now you know why you didn’t get one by the way!)

At the same time, while we had found some books that he was “reading” he was not able to score points in the comprehension-based online program Accelerated Reading. ZERO points in the first quarter of 3^rd grade. I was talking with his teacher – she was not worried, said he was fine. But how could he not understand any of the books he was reading? More importantly, retain?

I asked for him to be tested, and at first the school resisted. He was reading at grade level, and therefore, not sticking out. We had a first test at the school, which was followed by a lengthy wait for a test from the district which then was followed another month later by an assessment. Two pages – Henry had mild dyslexia.

Dyslexia is pretty interesting. First of all, it is a wiring process in the brain – or more specifically a lack of wiring – in the area that turns written words into sounds. You see the word “pilot” and don’t see that there are two basic sounds … and even more astounding, it can strike people in all sections of the world regardless or because of differences in language. You see, Henry is in Chinese Immersion- half a day in Chinese. He does not have trouble with the Chinese characters – amazingly, thankfully. It is his favorite and what a joy to have success for him. But there are people who are dyslexic in Chinese and not English – or in math and not language (dysgraphia).

Dyslexia is also usually accompanied by extra wiring in other parts of your brain – spatial awareness, big picture thinking. Alexander Graham Bell, Thomas Edison, Albert Einstein, Richard Branson, Henry Ford, Da Vinci, Patton, Timberlake. Some of the biggies. It can be a gift in many ways.

The district actually recognized the dyslexia in a differential for Henry – how well he did when he heard something vs when he read it. But, due to a lack of resources, and disconnect on the “mild” part of the diagnosis, he did not receive intervention but once a week for 1 hour. (Meaning an attempt to rebuild those sound to sight connections). Meanwhile, he was growing so disenchanted with school that he started having anxiety attacks. Crying every night and every morning. He was a wreck. I was a wreck.

We asked for accommodations, and they were put in place very quickly at a school and district level – the standardized test benchmarks were read to him and he scored a full 20% better from fall to spring. But, we experienced push back in the classroom – whether a lack of training or understanding or flexibility – tests were not read as I had requested. I offered to record tests, I asked for spelling to not be marked, I asked for alternative grading and assignments. On and on. It was a long semester.

We became so frustrated that we sought outside testing. There was something we were missing and we needed an expert to help us decipher what was going on. Henry was tested at the end of May. He got his report card a week later and got a C in math based off 6 paper and pencil tests that were not read to him. A B in Chinese after we were told his reading, comprehension, and fluency were on par with a native speaker.

Henry’s face fell when he saw his report card. My kid that was smart and capable and funny and so anxious about school that we had fought almost every day for months to keep him involved got a C on his report card at age 9. I was so upset for him. Grades don’t really matter until they do.

The outside testing came back two days later. Henry had a special Very Superior aptitude in applied mathematics. An IQ score higher than Davis or I. And, needed daily dyslexia intervention to retrain his brain.

This is the letter I wrote to the school “Henry needs to be in an academic environment that is stimulating, challenging, and supportive of his strengths and weaknesses. He needs to know that his teacher cares about him, he needs to have a sense of control (over assignments – like which books to read), and tangible recognition of how hard he is working such as receiving grades on content and thinking rather than on form and written assessments. More than for others, a dyslexic child’s route to learning is through meaning – focusing on topics and real live examples and experiences. (This is taken directly from Dr. Sally Shaywitz’ book, Overcoming Dyslexia – the #1 recommended book on dyslexia). We want to avoid him getting another C based on assessments that do not measure his true abilities – or allow his dyslexia to mask his capabilities.

This year we have amazing new teachers and they have a wonderful commitment to helping Henry learn. No spelling tests … instead, learning to type. Oral exams, project based work and computer assignments. We have fought to keep Henry in Chinese Immersion when so many said we should leave, but in doing so, have been unable to find common sccheduling with a school stretched on resources and time. Henry is the only kid in Chinese Immersion with dyslexia. And by 4^th grade it’s hard to miss much – we were looking at him missing 40% of his Chinese time a day (or all of math or all of English – every day.

Instead, we are pulling him out of school every day at 2pm. I am driving him to private one on one tutoring. At our expense. I have friends watching the twins every afternoon since I can no longer be there at pickup. The school is not standing in our way.

I don’t write this as a “woe is me” tirade. Although there are days when I still struggle with what I should have done differently … what my year is going to look like this year instead of the year pictured …

I don’t write this as a “shame on them” tirade. Because even with all the faults in the system, we have been helped.

I write this as a “look what we went through” diary. A small clue to the battles going on behind closed doors, in families, in schools. Most importantly, as a wakeup call. 1 in 5 kids have dyslexia it is estimated. Do their parents have the time to invest in rounds of follow ups and months of meetings? Resources that allow them to make decisions based on what’s right for their kid instead of what they can afford? Or could they just fake it through the system long enough to be perceived as “fine”?

There is much wrong with our educational system these days. A focus on testing to the detriment of creativity and out of the box thinking and teaching. A criminal lack of resources for teacher pay, school aids, technology. To my mind, the things that Henry needs are what every kid needs – why should anyone have to ask for a caring, supportive teacher that differentiates … where learning is tied to concepts and not answers?

I think of all the Henrys out there – amazing, capable kids who would get so turned off from school by middle school that they would fail out with the current testing focus. Or disenchanted, leave school. Their gifts might be seen if they have the drive (George Washington, Rockefeller, and Spielberg) or if they are a mild case and have figured out a way to make it through. But how many have we missed, or will we miss in the process?

Henry still doesn’t know what he doesn’t know. I’m not sure when and how he will embrace his dyslexia. I hope that he will grow to know what he has as gifts and challenges. To be an advocate and to speak openly about his differences. Because, by the way, I have mild dyslexia, too.

Mom, you should wear a bikini

My seven year old daughter is full of confidence and spunk and smarts and style. She asked for a bikini from the Easter Bunny. Delivered.

Totally and without reservation she put it on last weekend in preparation for a pool party, did a twirl in the mirror and set her face to one of approval. Then she turned to me and asked, “Mom, why don’t you wear a bikini?”

It was one of those seminal parenting moments I was totally and completely at a loss for words. “Because I worry what other people think?” “Because I have been called many things in my life and a covergirl is not one of them?” “Because my body has changed so much in the last four years that I sometimes don’t recognize my own reflection?” “Because the last time I wore a bikini was on my honeymoon with your Dad and I was a size I will never be again?”

I thought it would be a sign of strength and purpose – and frankly, there was a little bit of vanity involved – to be able to wear a bikini when I turn 40 (or even just before). Celebrating a milestone with style. But every time I look in the mirror, I see my imperfections. Every time.

I even had a few days where I did sit ups and crunches – thinking somehow that would put me over the edge and tighten this section of extra – abdominal muscles that were strained and pulled and cut and sewn. A belly that now thinks I’m postmenopausal and is storing fat like a rainy day is coming.

I know, logically, I should embrace my body – it’s been through a helluva lot. And it’s done me well. I have had three kids – two pregnancies – gained over 65 pounds with both … created happy healthy amazing kids including 16 pounds of twins … then the cancer. Scarred, implanted, tattooed … hormones amuk causing muffin tops and rounded corners and insomnia and anxiety. But, I’m still here. Why isn’t that enough?

As a woman raising a girl, I want to instill confidence and self-awareness and body image and a glorious, wonderful sense of assurance. I have struggled with it my whole life. What if I could save her from that in some small way? She is perfect now – fashion oblivious, sporty and hilarious and assertive and amazing. I want to keep this. Bottle it.

When she turned to me and asked me about the bikini, all of this went through my head. I thought of my struggles with healthy weight … losing weight when stressed to the point that I was melting away because I forgot to eat. Gaining weight while in chemo eating plates of french toast to abate the cravings. Up and down as a collegiate learning to eat and exercise and drink and not have the structure of square meals and sports.

Now I have the balance I always craved. I play tennis, I go to barre ocassionally, I dance with my kids. I drink light beer and champagne. I love chocolate. I’m not willing to give that all up, but I am also totally and completely and unabashedly self-conscious of the pile of “twin skin” and extra rolls that I have on my belly.

But when Emmy said that, I realized it’s not always about my feelings. Part of being a parent is sucking it up – lose sleep? Privacy? Adult conversation? And, selfishness.

So there was a bikini. And she wanted me to post it on Facebook. Here it is. But I do this for all the Moms out there raising girls. All the women who have gone through hell and back with cancer treatments and surgeries. All the women who realize that bodies can be perfectly imperfect and still celebrated. Who don’t have time for evened out tans or bikini waxes or body toning. Who live their lives and struggle through fears and try to love their bodies.

This will be for you, for me, but mostly, for my girl. Because why shouldn’t we all wear a bikini?

And yes, this is as brave as I can be – lounging, sitting down. Girls weekend. I’m trying!

And, my girlie loved the picture.

Happy Mother’s Day

As I lay in bed this morning enjoying my time off from getting kids ready for school or getting ready for work or letting out a puppy or in general doing anything and everything before 8am … I realized how strange a Mother’s day journey can be for so many of us.

First, the Mother’s Days where I celebrated my Mother with all I had – unblemished, complete love and appreciation. Then the first time I realized that life was impermanent- losing my grandmother early – and seeing my Mom struggle with the loss of her Mom. While I was in 8th grade. A loss I still cannot comprehend for her or for me.

Then – college mother’s days, an afterthought or forced reckoning – realizing I had to send a card or make a call as more of an obligation than a true gesture … growing apart(in a healthy way) but also recognizing parents are no idols, but people)

There are the Mother’s Days I had so full of hope that one day I would enjoy one with a child of my own – as a newly wed already fielding questions and comments.

Then, the Mother’s Days where I was struggling to conceive – taking over two years – a reminder of the failures of my body to do something that at that point I had decided was something I wanted.

The first Mother’s Day with an infant – breathless, joyful, in the weeds, and loving it.

Pregnant – carrying twins – realizing my whole world was about to turn upside down – crying about college savings and cars and how on Earth would we do this?

Then, 2011, now I know, a year colored by my body fighting off something unseen. I was exhausted, working, taking naps – literally – every day. What on earth was going on?

Then, the answer just before mother’s day in 2012 – the world that I had so carefully constructed and wished for would soon get upended. Would I be around for another mother’s day? I didn’t entertain the thought – just went through the motions of getting up each day and rising to fight again.

Now, I am back to joy – a group of creative, colorful, hilarious children and a husband who supports and celebrates me.

Today as we are celebrated for doing the toughest job in the world (let’s be honest – parenting IS so it should be carried equally but is not always) … let’s also remember our friends who are celebrating or mourning differently. It’s not about how has the best mother’s day today … but about remembering mothers of all kinds and where they are in their journey. My friend with metastatic cancer who is celebrating the first mother’s day with her son, carried by a surrogate. My friend still struggling to conceive after three years of tests and diagnosis. My friend who is gay and cannot officially carry the rights of motherhood here in Texas the same way as others should. My friend who has lost two angels too soon, but manages to carry on and celebrate the life she has with two wonderful, sweet children. My friend who just lost her Mom to a long struggle with Alzheimer’s. And of course, to those of you who continue to inspire me to be a better Mom – with encouragement, love, support, amazing attitudes, a shoulder to cry on, carpools and more.

Happy Mother’s Day to all. I hope you get all you wish for, but most importantly, that you feel loved and appreciated and supported. Because you are all amazing.

Ground Control to Major Tom – How ARE you?

Please forgive me dear readers for it has been one month and two weeks since my last update.

I admit I am almost running from all things that smack of 2012 – whether it be blogs, art bras, foods I found enjoyable … even clothes.

My problems are plain old every day problems now. It’s trying to figure out how to get the kids home from school every day with me working and an inconsistent, bandaided sitter approach to afternoons after our nanny quit.

It’s trying to figure out how to get a little extra sleep – past 6:30 – with three kids and two dogs who all arise at the crack of dawn and want to know on a given day what the weather will be, did we know it was the 1st of the month, would there be soccer, and what to do when their arm falls asleep. The last one happens in the middle of the night, too. As does visiting because they are cold, hungry, scared, or not feeling well.

We had strep and flu at the same time at the house. Our puppy apprently likes eating dog poop but last time she did it she threw up all over everything.

It’s good – normal. Vacuuming three times a week, washing clothes and hair often because of allergies, focusing on remodeling opportunities down the road, worrying about the impression I make at work. Planning trips between soccer and scouts and swim.

But then I am reminded that I’m not normal – and won’t be. I get a comment at my company retreat that I look so different – why am I growing my hair differently?

I have this super strange thing going on with my mouth where my tongue is inflamed and taste buds are enlarged and instead of just worrying about what kind of crazy thing I have going on – allergies? a virus? I have to set up an appointment to talk to my oncologist.

When I feel gas in my belly – is it the beans or is it cancer?

When I don’t get a good night of sleep and have to take a nap the next day I am reminded that my body is still only recovering from that “year and a half long battle” that you hear referenced in stories about other cancer fighters. I am that person.

I struggle with day to day being so mundane, so good, and yet so shadowed. I try to right myself by focusing on the accomplishments – a soccer win, kids scoring, perfect report cards, a win at work, a beautiful new master bedroom … and it helps most of the time.

But there are days when it all comes back – when the pain and fear of losing myself, my family, my battle … when all I want is just a break from this crazy thing that I now have that’s called life … and I yearn strangely for the days when I only had to worry about getting myself through the day as if that was enough. Now it seems like it’s never enough.

But, in general, when asked how I am, I am good. I am great. I am alive and healthy and happy. But don’t expect the same level of frenetic behavior as last year – I can’t make a bra and work and live and love. I can’t start a foundation and work and make dinner and clean up the dog poop. Some of you will – and can – and I totally love that you can.

I can’t any more. And that will have to be enough.

Prognosis Good, Surgery Curative

Cameron, the 10 year old lab mix dog that saw me through trials and tribulations of cancer and treatment is apparently cancer free as well after open chest surgery last week.

We went in on Tuesday to meet with a surgeon – to talk about options. He was the best in town, we were told – referred by our vet and other doggie parents – and Davis and I took off from work to attend.

We stood there with an anxious dog while Dr. Kerpsack reread some of the materials we had and then laid it out – Cameron either had a cyst (benign) or thymoma (cancer) based on all the imaging and all the studies and all his experience. If it was cancer, surgery was necessary and soon – if it was a cyst, it could get big enough to cause him trouble later but it wasn’t urgent. But, if we wait, guess what? It could get too big to operate at all. And, oh by the way, because our vet had conveyed a sense of urgency, he had scheduled time to take care of it today. What did we think?

I am still reeling with the intensity of these last few weeks – the recurrence of cancer in our lives, the pain of not knowing what to do, and then the difficult decision to put our helpless sweet animal through what would end up being open chest surgery. Now, remarkably, he is up walking around – we have to keep him from jumping on the bed – he doesn’t know his own limits it seems, only I know mine more acutely now than ever.

I think I am going through some version of PTSD – not that it was combat in the traditional sense, but certainly trauma. And for the entirety of the journey I feel I was able to keep moving – to not allow myself the moments of doom or anxiety that could have enveloped me.

The irony is I feel it now.

I feel such a sense of commitment to Cameron’s recovery that each decision – should he be allowed outside? Should he be forced to sleep in the guest room? When do I give him his pain meds? How do we separate him from the puppy energy? Each step has taken on a gravitas that is seeping into my bones.

All those feelings of loss and pain and loneliness are here again – retrograde.

The irony is that he’s doing great. The surgeon claimed that the prognosis was good and they removed the mass which it turned out was thymoma. It was 6cm by 10 cm. They also removed a giant lipoma (fat mass) that had developed under his chin – 30cm by 30cm. Now he is the dog formerly known as frog dog. And I can tell he’s loving it.

I just feel a little buffeted this time around. I have no additional bandwidth to process all the newness. The new normal again and again and again. It’s one thing to get a strategy for sleep with a new puppy. Quite another to layer on the adult dog recovering who wants to go upstairs but can’t with doctor’s orders and how do you keep them separate and happy with one adult available during the day over a three day weekend?

My husband has borne the brunt of the sleep disruption because I have no capability – no reservoir of strength any more for sleep disruption. I am so very thankful. Where would I be if I were truly sleep deprived instead of just sleep altered?

I also have no capability for additional responsibilities. I am ridiculously thankful we have the puppy – who else could we cuddle and coddle while going through this emotional rollercoaster? And she’s amazing and cute and funny and potty trained.

I went back and reread the notes and cards that you all sent throughout my most focused battle – with each day it gets better – you’ll look back on this and realize that it really did suck – and that every victory is worth noting.

It was a good reminder of the path I have taken – and now that I can help my dog take it too as best I can.

Anxiety is back – that old familiar feeling

Blogging is cathartic for me. So, I hope I get some of that good juju by taking a break today to put it all on the line. This one will be all over the place – because that’s where I am right now. But ohwell, another day in the life.

I have a ball of anxiety in my stomach curled up consuming me right now. I have always tended toward anxious – that is the type A personality after all, but occasionally, it comes back. It is like a ball of warmth that sits in my belly – reminding me every minute that I am not in control. Hi there ball I say – and it rustles and coils.

It seems to coincide with lack of sleep. And, here we have again, lack of sleep. (puppy – more on that in a minute)

It seems to coincide with multiple workstreams of powerlessness – a lack of a plan or control on a few different fronts.

So, here I am with multiple issues (none life threatening, none that are massive), but without a means to corrale my feelings, emotions, or plan a next step, I am paralyzed with my anxiety ball until I either get enough sleep, take enough meds, or come up with enough plans to make it all better.

After the initial euphoria that the dog’s cancer was operable, there are qualifications. The surgeons are suggesting multiple surgeries to remove it, multiple procedures that would be violently invasive – requiring drains and stitches and recuperation and recovery. He is fine right now, laying next to me on the bed. He even managed to play a bit with the puppy at her insistence this weekend. How can we put him through such pain and uncertainty when he has no visible distress right now? How much discomfort should we force on him just to have him with us another six months? I fight back tears even as I write this – how do you decide someone else’s well being? When they have no say … and yes, he’s a dog, but the echoes to my past two years (how can I expect him at 10 1/2 to recover what I am still reeling from in terms of invasive and corrective surgery? how can I not provide him the same support and therapy that he provided to me?)

I am having trouble with my hip – a consistent muscle ache that leaves me unable to sit or stand certain days. Is it the cancer back? I have appointments with physical therapists and masseuses and have started doing yoga and exercising – but what if that’s not enough?

And, the puppy. She is wonderful – sweet and loving and curious and soft and hilarious. But she is up in the night – how do we balance what we know is right (giving her access to the yard) with the needs of the family – SLEEP. I think we’re going to have to go against my humane judgement and crate her at night in the back room. Sanity and our health and happiness has to come first. I remind myself that some dogs live outside all the time. And then I start to second guess – was it too much to take on to make this addition now? Was I wrong?

Sleeplessness is a funny thing – it deprives you of your ability to compartmentalize, to fairly judge the severity of issues, and you forget how powerful an agent of destruction it can be.

OK, my anxiety ball is a little smaller now – I know it will grow the next time I think about end of life for Cameron and the decisions we must make, but I also must remember he is our dog and he is loved and happy right now.

I must remember that we are kind and loving den mates for our puppy – who is learning what she can do, and we are learning what we can do. As Davis mentioned to me last night – sometimes these last few months my desire is not met by my capability. I can not do the sleepless nights right now.

And, I think and hope and pray that this is just my muscles struggling to understand how to support and manage my new self, and not the cancer back. Enough is on the plate right now.

I heard a hilarious rant the other day from a lady who had lost her mother, her boyfriend, her apartment, and was diagnosed with cancer.

She said “Does God really give us only what we can handle? I picture him up there sometimes laughing – oh, she can take a little more. And the angels saying, God – what are you thinking?”

 

The New Year’s Blog – 2014 and cancer-free … for everyone?

I had thought this would be the year our family escaped the cloud of cancer. Unfortunately we enter with a diagnosis hanging over our doggie – thymoma – cancer of the thymus gland. However, it is operable, and we hope he will have a successful surgery and long and happy recovery. THANK GOODNESS. The best news possible given the situation.

The parallels between our diagnosis are striking to me. We had virtually no symptoms, had a chance scan, and discovered a massive lump. It makes me very thankful for modern technology, but also concerned in general -what else are we missing if we don’t pay attention?

Although … one major difference … I was not bounced for my scheduled CT scan because there was a zebra with an abdominal wound in need. Yes, a zebra, in College Station.

After the rollercoaster of emotions the past few days, we enter 2014 with profound relief and gratitude – that our dog has the capability to live long and happy – that we have the time and resources to tackle his cancer and my recovery. That we are surrounded by a loving and caring community who loves my “Nicky Minaj pink streaks” and our giant frog dog.

These are the times when I remember why 2012, and 2013 both didn’t suck.

• I grew to a first name basis with my insurance company and reached my out of pocket maximum. Two years running. Cool thing is – nice tax break. Now that I’m working again, I can be so thankful for our cash flow and the fact that we had amazing insurance through IBM. $300K paid in total for me the last two years. Now that we are paying out of pocket for the dog, I realize the true magnitude of that gift.
• I realized how amazing my husband is – that support I had planned to give him was returned a hundredfold as he took the reins of family control, family CEO, shrink, Mom and Dad. He was – and is – amazing.
• I got to see what my body is capable of in terms of healing – and it’s pretty freaking awesome.
• I’m no longer vain about my appearance. Not that I really ever was, and yes, I do wear makeup and earrings. But there are some bits here and there that aren’t what they used to be and hey, that’s OK. I mean, I’m also missing bits that should be there so I figure it all sorts out.
• I get to have perky Barbie boobs – OF MY OWN CHOOSING! – for the rest of my life courtesy of insurance. Those of you without having nursed three children may not realize the importance of this. And yes, picking out a size is both weird and exhilarating. Then, there’s the tatooing process – something else I never would have imagined, and in some ways I feel empowered because I am now “edgier” – right?!
• I’m a little less inclined to sweat the small stuff – or even the semi small stuff. This year’s Christmas cards were wonky, the presents were wrapped by my six year olds ( and yes, they bought me two pillow pets and a bathmat for Christmas), – and NO ONE CARES! And I’m happy with my pillow pet! It turns out that a lot of the stuff you thought was important just isn’t.

A friend asked me last night about resolutions. For the first time in many years, I don’t have any. I have hopes – that we get and stay cancer free. That my kids continue to be as happy and curious and excited as they have been. That our puppy continues to entertain, love and grow. That our family and friends have success and happiness and all the good things there are in 2014. I will try to walk a little more, eat a little better, (I did get a fit band for Christmas!) and take care of myself. But, all of that is gravy.

I resolve to live more in the moment than before. We have always been planners of the maximum variety and I think the edge has been dulled. Let’s go on that trip we put off (yes, I got to go to New York to see Christmas lights with JUST DAVIS  this year as a present!)

Our new motto: go with happy. And if that means three kids out at 37 degrees on their new scooters, then that’s just what it will be.

I wish everyone a happy HEALTHY prosperous new year, and joy every day.