Breast Cancer, breast cancer recurrance, Chemotherapy, Coping with Cancer, expander, Lymphovascular Invasion, mastectomy, moms and cancer, Tamoxifen, Uncategorized

It’s Nathan’s World

 

 

I worked throughout my entire pregnancy. I worked while I was in the hospital with an epidural. I worked with a brand new baby in tow.  I worked after dropping Nathan off at his first day of full-day preschool when he was 18 months old. I worked a lot.

And then I was diagnosed with breast cancer.

The day I returned to my job after taking FMLA (Family Medical Leave of Absence), I was let go from my position as an “at will” employee. Since that time, I have looked for work, worked part-time jobs, contractual jobs and adjunct teaching jobs while Nathan went to kindergarten.

And then, bam pow  the school year was over.

Nathan and I would be spending a lot of time together. 72 days together. 1008 waking hours ‘mano a mano’. I admit it, I’ve learned a lot from my son. His pearls of wisdom, so profound, that I had to write each one down as to not forget.

Lesson 1: Don’t make empty threats: While out driving somewhere (probably the 99 cent store- my favorite place on earth), Nathan was, as usual, pressing my buttons.

Me: I’m going to turn this car right around!

Nathan: No you’re not. There’s a “No U Turn” sign.

Lesson 2: Dad knows everyone: The best part about having a loose tooth is the money. After all it’s all about the Benjamin’s, right?

Nathan: Mom! I have a loose tooth! How much will the Tooth Fairy give me?

Me: I don’t know. Ask your dad. He’s installing her garbage disposal today.

Nathan: Really? No. Wait. Yeah. That makes sense. Dad knows pretty much everyone.

Lesson 3: Don’t mess with Santa: After losing his second tooth, Nathan found a check to cash, from the Tooth Fairy, under his pillow the next morning. Later that day, the following conversation ensued:

Nathan: Mom, I know the Tooth Fairy isn’t real because magic isn’t real. It’s you and dad. tooth fairy

Me: Huh. So then what about the Easter Bunny?

Nathan: Not real.

Me: Santa?

Nathan: All those presents? Like you and dad would ever buy all that stuff. Yeah. Right. Santa is totally real.

Lesson 4: There’s never too much of a good thing: I have always taught Nathan to be proud of his body, and to use the right words for each part. During another average day, Nathan declared:

“I love my penis. You know why? It is so unique!”

Lesson 5: “If you just listen, you’ll catch the early worm” (A direct quote from the dad): I find myself using a lot of idioms that I end up having to also explain. Once, when Nathan was much younger I said “… and then we’ll go from there.” It took me forever to explain that “from there” was not a real place. Now that he is older (a whopping 6-years old), Nathan also uses idioms.

“Dad, are you leaving (his truck was running) because you’re wasting daylight on your truck!”

“Think before you leap!”

and… “It’s a blister outside!”

Lesson 6: Hello Tree. Hello Apple: I can’t say I’m surprised (and secretly very pleased).

Me: Nathan, slide over (in booth)

Nathan: I can’t. I have an invisible fat friend sitting there.

and…

Me: Which way do you want to go (pointing left and right)?

Nathan: Apple.

and …

Me: Can I cuddle with you a little longer?

Nathan: You can cuddle with me as long as you want. Until I’m dead. Then that would be weird.

Lesson 8: Write it down. Write it all down: Keep a journal, blog, photo diary – but document it. I want everyone to appreciate this little boy as much as I do. Because he is truly amazing and funny and witty. And compassionate:

“Mom, I’m sorry your sad. I wish we were rich. Not to get stuff but just so you don’t have to work anymore.”

and smart.

Very, VERY smart: “Some people have a big brain but don’t know a thing”

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Breast Cancer, breast cancer recurrance, Chemotherapy, Coping with Cancer, expander, Lymphovascular Invasion, mastectomy, moms and cancer, Moores Cancer Institute, Oncotype, reconstructive surgery, Tamoxifen, Uncategorized

But are you sure, sure?

Silv, my grandmother, basically hitchhiked across the country in the 1930s because women weren’t supposed do that kind of thing. Until the ripe old age of 93, at 4′ 10″ – no one questioned Silv. You wanted her in your corner, not looking across the ring at you. So when you start to doubt yourself, (Inner dialogue… “It’s not you. It’s me.”) repeat after me “WWSD” (What Would Silv Do?)

I recently had an ultrasound following a mammogram. Totally routine visit. Nothing to panic about. You know me well enough to know that there is always an ‘except’, ‘but’ or ‘however’… so this should come as no surprise. Since a mammogram can only be done on the right side, I assumed that the ultrasound would focus on my left side and remaining lymph nodes. You know what happens when we ass-u-me…

After leaving the radiology center- I called my oncologist who said that she only ordered an ultrasound on the right side because there is nothing to see on the left side. “You’re going to have to trust me. I’m your doctor.” You’re cured!” she declared.

OHHHHH!!!!! I get it now! The surgeon was able to get every single solitary microscopic cancer cell that had already invaded my vascular system. Got it! So there is NO POSSIBLE way one of those little buggers could have gotten lose and wandered off. Right-o! No need to worry! Check and check!

sheathed             sheathed too

Delving into the bottomless pit of despair (AKA the Internet) – I was guided to Thermography Screening? Ever hear of a mood ring? It’s sort of like that but bigger! Here’s how it works: when your body is cooled down in a temperature-controlled room, normal blood vessels constrict to conserve heat. Blood vessels that are fighting infection or multiplying like bunnies are working so hard that they create their own heat source.

Our ‘ladies’ are teaming with estrogen fed, law-abiding breast cells that follow their own vascular rules and patterns.  The Bales Thermal Image Processor camera’s job is to screen for any no goodniks before they recruit other no goodniks and form the No Goodnik Gang of No Goodniks.

lVI PARTY

 

The WISE AND POWERFUL FDA has not yet approved this type of voodoo witchcraft, so I decided to pay out of pocket and give it a go. I was guided into a really REALLY cold room and told to disrobe from the waist up. Next, the thermographer put an ice pack on my back to make me even colder. Maybe the FDA was right…  “We” were now ready for the next step where the Bales TIP (thermal camera) was used to take pictures of my ladies (who were at full attention). Thankfully this only took about 15 minutes, after which time I was allowed to chip the icicles from my disrobed torso. Now all I had to do was wait for the doctor to call with the results in two to three days.

You can image my surprise when two short hours later the Dr. Sellens at http://www.mypinkimage.com/called with the results. That’s never a good sign. But it’s okay since it’s just witchcraft after all. The thermography showed that lefty has vascular patterns and heat patterns well outside the normal limits. Righty, tired of being left out, also had ‘atypical vascular patterns’ but still within normal limits.

no goodnick

 

I called my Physician’s Assistant (PA) to help me navigate my ‘should I panic?’ emotional state. She has been, and continues to be, the only person who doesn’t tell me that anti-anxiety meds will make all my problems magically disappear. She actually… wait for it…

listening ears

 

She ordered an MRI with contrast and promised to call me as soon as she got the results, which was later that same day. I recently found out that all this happened while she was on vacation. Vacation! What kind of amazing person does this??? I’ll tell you who- Annie (I have to keep her last name secret from all you PA Poachers!).

Are you dying to hear the results? To find out if you should start making a voodoo doll and practicing witchcraft?

Righty has mild background enhancement (laterally) with nonspecific foci. Well that cleared things right up, didn’t it! And… back to the pit. According to the University of Washington (2015), breast cancer survivors whose MRI showed mild to moderate background enhancement were nine times more likely to develop recurring breast cancer than those with minimal to no enhancement. Are you thinking what I’m thinking? What’s one study? Meh. Oh… Wait. The Journal of Radiology (2016) concluded that moderate or marked background enhancement is associated with significantly greater odds of breast cancer. Oh.

Interesting… what about Lefty you ask? No suspicious enhancement (whew!), but there is a 1cm nonspecific internal mammary lymph node ‘situation’ that may be reactive. (In our house we use the word ‘situation’ a lot by the way). Common causes of nonspecific reactive nodes include infections like a common cold, an autoimmune disorder and, cancer. Huh. You don’t say.

So now what? I have another MRI scheduled in three months from now “just to check”, says my oncologist. “It’s probably nothing but we’ll redo the test in three months just to be sure”.  Be sure? I thought you were sure? 100% sure to be exact.

In truth, it probably is absolutely nothing but I, on the other hand, am 100% sure that I am Silv’s granddaughter and that you do not want to be looking across the ring at me. Of this I am sure, sure.

 

 

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Breast Cancer, Chemotherapy, Coping with Cancer, expander, Lymphovascular Invasion, mastectomy, moms and cancer, Oncotype, reconstructive surgery, Tamoxifen, Uncategorized

Kid, you’ll move mountains!

Since he was 18 months old, Nathan has been in school. IMG_1508For the majority  of this time, he has been in an early childhood public education program. After his graduation ceremony (see earlier blog), I drafted the following letter to the district’s superintendent.


Early childhood education is more than teaching. As the parent of a preschooler, believe me, I know.

The best laid plans of mice and men often go awry ~ Robert Burns

After interviewing at least dozen preschools to find our family’s best fit, I was disheartened. I almost cancelled our last appointment at Child Development Center. Thankfully I didn’t. It was apparent that the director created a different kind of environment. Parents were conversing with ease because teachers were engaged, not just supervising. Nathan and I were welcomed into a place where we immediately felt at home. After concluding the tour, I completing the necessary paperwork to begin school after the Thanksgiving break. I told Nathan it was time to leave, and then the unthinkable happened. He wanted to stay! Nathan wanted to stay with his new friends and listen to the teacher read books. After rearranging schedules our start date was changed. He began his CDC journey that very day.

Change is never easy, especially for preschoolers who require consistency and routine. Over the past two and a half years, Nathan has progressed through multiple classroom environments and adapted to various teaching styles. The school’s director recognizes that pushing children outside of their comfort zone is key to Vygotsky’s Zone of Proximal Development. She guides and encourages social and academic growth by remaining the constant variable through each these transformational milestones. Every morning, she is outside welcoming parents and children by name, making personal connections, and providing an extra set of hands on the playground. This intentional construct fosters independence, encourages community relationships, and builds trust between school and family.

I often find myself exiting the car for afternoon pickup thinking of the laundry list of items on my to-do list for the night. This mindset quickly turns 180o after passing through the CDC playground gates. The ebullient atmosphere is contagious. Instead of rushing home, parents are on the playground talking with each other while their children continue to play. Nathan asks me if he can stay longer to play with his friends, which gives me a chance to play with the other moms too. This speaks volumes to the climate of neighborhood bonding that is an uncommon trait of today’s working parents.

 

Kid, you’ll move mountains! ~ Dr. Seuss

I call Nathan my “hummingbird” because he is in constant movement. He is not an easy kid. Learning always involves touching things, and sometimes (oftentimes if we’re being honest here…) breaking them. He requires a lot of patience, redirection and positive reinforcement. The school’s director has genuinely embraced his exuberance. She has placed Nathan with teachers who have a knack for kids with bottomless cups of energy. In this environment he has thrived academically and grown into a compassionate, emotionally conscience little boy.

I am not an easy mom. I am also in constant movement. I too require a lot of patience and positive reinforcement. Never more so than on November 1, 2014. I was diagnosed with grade 3, stage 2 invasive ductal carcinoma. Every mother’s worst nightmare. This is when the true spirit of “family and community support” is put to the test. The director passed with flying colors. She respected my privacy while ensuring there were minimal interruption to my hummingbird’s daily routine; his cup of energy was always brimming with cheerful abandonment. One and a half years later, I am not cured but I am in remission. Without support from the CDC, my road to recovery would have been littered with boulders instead of pebbles. My son now proudly tells people that his mom is cancer free and I proudly tell people that I couldn’t have made it through without the CDC.

He is ready for kindergarten. I’m not… but he is.

 

Imagination will get you everywhere ~ Albert Einstein

I hope that we continue to encounter teachers like the ones at the CDC who can imagine my little boy’s future of “being the change”. This can only happen with guidance from forward-thinking, innovative leaders who recognize the needs of 21st century learners. Leaders who stoke the flames of imaginary steam engine trains that are brimming with flying machines, friendly monsters and talking dogs. Leaders who make sure to listen with eyes and ears. And leaders who give “one more chance” five more times.

 

And all the colors I am inside have not been invented yet ~ Shel Silverstein

Of these things I am certain because… for better or worse… I am Nathan’s mom.

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Breast Cancer, Chemotherapy, Coping with Cancer, expander, Lymphovascular Invasion, mastectomy, reconstructive surgery, Tamoxifen, Uncategorized

Turning the Tassel

I never wanted to have children in the first place. While all of my girlfriends were trying to get pregnant, waddling around in the final months of pregnancy, or changing dirty diapers post pregnancy, all I could think was “this is so totally not for me”.  Until that fateful day when… it was so totally me. And there I sat an hour early, to secure two front row seats, proudly waiting for the ceremonial tassel turning: camera in one hand and tissue in the other.

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Slowly the hordes of moms, dads, grandparents, aunts, uncles and friends trickled in, armed with balloons and flowers. While waiting for the ceremony to begin I overheard their jokes about how preschool graduation was a great excuse to leave work early. I chose to sit alone, engaged in my own inner dialogue:

I earned this. Nathan earned this. We earned this. Nathan’s bottomless cup of energy was always (mostly) brimming with cheerful abandonment while I worked 80 hours a week to pay for his first year of preschool. And while I endured three bouts of pneumonia during his second year of preschool. And while I underwent five surgeries during his final year of preschool. And through it all, I haven’t complained (much), haven’t lamented (much), and haven’t missed any Christmas, Valentine’s, Easter, or summer solstice school celebrations.

From the front row, I proudly watched Nathan walk across the jungle-gym stage, coast down the curved sliding board aisle and turn his tassel at the end of his descent with grandeur. I was so proud of us.

For the past year and a half, our morning routine included taking Tamoxifen, a life-saving pill that blocks Estrogen from binding to Cancer, and daily reminder that I will always have invasive ductal carcinoma.  

pacman cancer

 

and  Plaquenil, the WD-40 of  autoimmune disorders. It is used to keep things moving in the right direction. Any direction… As long as it’s moving.

oil can

and finally, I never missed my healthy dose of pain-in-the-neck three times a day, and four times on the days that end with the letter “y”.

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Was it worth it? You tell me:

 

 

 

 

2016-06-03 18.42.37

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Breast Cancer, Chemotherapy, Coping with Cancer, expander, Lymphovascular Invasion, mastectomy, Oncotype, reconstructive surgery, Tamoxifen, Uncategorized

The Long and Short of it

Yesterday, a friend of mine asked, “Do you regret cutting your hair?” Keep in mind that she has stage 4 breast cancer. She has grown and lost her hair multiple times. She is currently has enough hair, where when she puts on a cap, thinks she looks like (in her words) a hip barista. I’m trying to convince her to dye, what little is left, hot pink. She’s not there yet, but I know with a little more encouragement (read between the lines- nagging), she’ll get there.

But back to the story… I try to never have any regrets in life. Everything is an experience. A lesson.

exit and enterance

My hair and I had a deal: I loved it and it loved me. So much so that I didn’t cut it for almost 10 years. I mean a little snip here and there, and once to dislodge a Hot Wheels, but other than that we had a symbiotic relationship.

While I know the fashion industry dictates that women over 40 shouldn’t have long hair,  it was my security blanket. We had been together for such a long time. My hair was my identity… well that and being Nathan’s mom.

But things change.

Not the “Nathan’s mom” part… although some days…

well anyway…

After hearing “Aggressive, Invasive Ductal Carcinoma” I immediately made up my mind that I would donate my hair before watching it get swept off the floor, clog the shower drain, and stay on my pillow long after my head had left it. Even when the doctor said that many people with breast cancer don’t need chemo anymore, I still heard the words Aggressive. Invasive. Carcinoma echo in my head (where brain cells used to be before becoming Nathan’s mom).

So off I went and off it went.

Not a little at a time, to get used to the idea, but the whole kit & kaboodle.

Snip. Snip. Snip.

I immediately looked and felt like a different person.

Since “After”, it’s been cut again (and again), bleached and dyed. Things I never would have done “Before”. So to answer her question:

Do I miss my hair? Yes, actually, I miss it a lot.

Will I grow it long? Yes, at 6” a year it’ll take about 4 years.

Do I regret cutting it? No. Because when you get rid of your security blanket, you have nowhere to hide. So here I am world: dyed hair (currently purple), tattooed (7 and counting!), and pierced (ears and nose).

My type of cancer has a fairly reasonable chance of recurrence, and I won’t have the option of ‘opting out’ again. So if I lose all my hair I know I can handle it. I’ll dye something, pierce something,  and tattoo something. Who’s with me? Who’s in?

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Breast Cancer, Chemotherapy, Lymphovascular Invasion, mastectomy, Oncotype, reconstructive surgery, Tamoxifen

I’ve Lost My Marbles

These days breast cancer treatment is like going to In N Out Burger. You can get it tailor-made if you use the secret language. Those in the ‘know’ sound like this:

“I am HER neg, PR/ER positive”

“I found out mine is triple negative”

“What are your staging numbers?”

“PT2CN0.”

“BRACA neg, which is good”

You thought that was confusing? Try navigating through the treatment plan options. If your lymph node biopsy is positive then you do not pass go nor do you collect $200 dollars. That will get you a pass straight to Chemotown. Since I was diagnosed as “node negative” (layman interpretation: the cancer cells enjoyed my ladies so much that they didn’t want to leave), the next step was Oncotype testing. The doctors used this test to decide the rate of exchange between breast cancer recurrence and chemotherapy. Pick a door. Any door.

Door #1-17 Oncotype Score:  “Get Out of Town” free pass.

Door #32-100 Oncotype Score: Welcome  to Chemotown! Sit back and relax. You’ll be here for a while.

door 1-17               door 32-100

Door #18 – 31 Oncotype Score: Painted an ambiguous gray, behind this door you’ll find a “Complimentary Stay” gift card and a “Get Out of Town” free pass.
door 18-31

I chose the excitement and ambiguity of the gray door and was offered the “Free Stay”  and the “Get Outta Town” Pass. Decisions, decisions… what’s a girl to do?

ER/PR POSITIVE: Out of 100 cells tested for cancer, 97 of mine were found to be an unorganized mess of estrogen and progesterone. The cells love me so much instead of dying off and growing, they just wanted to stick around.

       NORMAL CELL                                                                       INVASIVE CARCINOMA              NORMAL DUCT -NO CANCER                          invasive ductal cancer

GRADE (0 – 3): The higher the grade, the more disorganized and irregular the cells and quicker they divide. Because there was a party happening, we (me and the ladies!) were given the clear cut “High-Grade, grades 2 and 3”.

STAGE (0 – 4): The higher the number, the bigger the showmanship. Being completely disorganized but enjoying each other’s company, we decided to that moving was too much of a hassle.  I had one tumor that was  1.5 centimeters. But because news of the party spread, there was a total of 6.5 centimeters of cancer growth around the initial tumor.  My lymph nodes tested negative, but I did have lymphovascular invasion, so I earned a Stage 2.

LVI (Lymphovascular Invasion): These guys know how to do it right! They turn their house party into a block party by making their own network of blood vessels. Just like the game of telephone, my blood vessels created a system of disorganized communication. The good news is that the police came and broke up the party before the phone line reached my lymph nodes. The less good news is that like any good house party, a few quick ones always escape the fun police.

lVI PARTY

ONCOTYPE DX (1 – 100): As the winners of a score from 18 to 31, the treatment is more of a “go with your gut”. The advice I got was “Your score is pretty low. But it is in the intermediate level. But your lymph nodes are negative. But you do have lymphovascular invasion. But Tamoxifen is a very effective hormone therapy. But it is very harsh on the system. But chemo is even harsher. But it might give you a peace of mind.”  Armed with all this helpful information, I was sent home to think about starting chemo or Tamoxifen.

Ever play roulette? Imagine you have a jar with 100 green marbles:green marbles

Option 1- Tamoxifen: Now, take 15 out and replace them with red marbles. Next ask a friend, spouse, neighbor or dog to blindfold you. No peeking! Reach your hand into the jar and grab a marble. It’s like the game Operation… careful not to pick red marble or you lose your turn!

Option 2: Chemo and Tamoxifen: Take out three of those little red guys to replace with the green ones. Blindfold. Rinse. Repeat. marbles

I understand we’re not talking about your mother’s chemo. This chemo is a kinder, gentler chemo.  But is it worth three extra balls to destroy my entire immune system? Is it worth postponing the ER/PR receptor condom (i.e. Tamoxifen) to first destroy all my cells? Are three more worth the possibility of permanent heart damage? For me it was a no-brainer. Didn’t even have to think about it. Decided right there, with my cancer-buddy in tow. “Thank you very much but no thank you. I’ll pass.” We left Oncology with three lucky green marbles rolling around in my pocket.

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