Monday, August 14, 2017

Another Test

I'm having another test today.

An MRI with contrast.

They're looking for cancer.

Again.

Because in February, I had one good scare, and the result of that was that based upon the report from the Radiologist, my Chemo Doc ordered an MRI with contrast, for August.

August has always been a difficult month for me, for lots of reasons. But the biggest reason being that on August 16, 1988, the summer before my junior year in high school, I was riding my bike and hit by a truck that dragged me about 15 feet on the asphalt. I am fortunate and thankful that I suffered no breaks or sprains. I didn't hit my head, and this was before there was a push for bike helmets. I recognize how lucky I was (and am). But the road rash that was created ran down my right leg, from my upper thigh, all the way to my ankle. The therapy and healing process was excruciating, both physically and emotionally.

Before today's MRI, I know they are drawing labs from my chemo port, because I still have that mother lovin' thing in, and then they are going to inject me with some bullshit that, if I have cancer, is going to cause the cancer cells to light up.

I know I'll go in and get topless, remove all jewelry, absolutely no metal on my body, and then I'll put on a gown with the opening in the front and I'll lay on my stomach, with my face down in a cradle, and the tech will probably be a female tech and she'll be responsible for placing my breasts into the dedicated breast coils, which are also known as holes, and that I have to be touched by yet another stranger and she'll wear rubber gloves that will probably be pink, because god forbid you ever forget that you're a breast cancer patient. And absolutely nothing about this is fun, or sexy, or makes me feel like a woman. It's actually super stressful, and a little bit humiliating.

And then they'll insert me and the table into the MRI machine. Maybe they'll let me plug my phone into their system, and cue up my own music, like the cool techs when I had the PET scan with contrast right after I was diagnosed with breast cancer, and we all listened to U2's Songs of Innocence.

Maybe the liquid bullshit they're going to inject me with will not seep out and run down my breasts like it did for a sister breast cancer survivor who shared her experience a long time ago, before my own MRI with contrast was ordered.

So knowing this was coming, I've spent the last several days taking the best care of myself as I possibly could. Building strength and positive energy. Surrounding myself with people who love me and whom I love very much.

Wednesday I took Isaac for a check-up and x-rays on his arm. He's been out of the cast for a couple of weeks, and in a removable splint. The x-rays showed that the arm is mostly healed. Mostly. Basically there's a little lip on one of the bones and he has some restrictions with his arm for another couple of weeks, but doesn't have to wear his splint. He is permitted to swim and play soccer, but he's not permitted to hit or block with his right arm at Hapkido. And absolutely no wrestling with his brother, because his brother weights more than twice what he does.

See what I did there? Doctor's orders, until the next x-ray, which is currently slated for Sept 19, absolutely positively, no wrestling with your brother. I'm the only one who can raise my voice and yell at them to stop wrestling, which creates a tremendous amount of stress and puts a lot of pressure on me. Dr. Dean said, no wrestling. Jesus, you don't need to start third grade with a brand new cast, child. Mommy for the win.

After the doctor's appointment, we went downtown for pizza and ran a few errands, including finding a cool sketchbook for him. It had been a really long time since I have been able to spend some quality time alone with Isaac, and it was much needed by both of us.

Thursday I took the boys to the lake for the first time all summer. Randy needed to rest his voice from his procedure on August 2. On our way out 101, we watched a bald eagle launch off of an anciently tall tree and take flight, soaring over us and allowing the boys to watch it through the panoramic moon roof in the Highlander; a good omen. We met up with Momma Christine and her boys, and we were there for about 5 hours, catching up on the important things and making plans for the future. My boys have been wanting to swim out to the log and jump off of it for the past couple of years, so whenever we go to the pool, we've been working on jumping off the diving board and swimming to the side, which is level one. And the Olympic Platform Diving is the Boss Level, just so you have an idea of what we're dealing with here. There's a large range of levels for diving, but I won't go into that here.

Anyway, thank the Goddess for Momma Christine always having a safety net because she had life vests, and the boys felt ok to swim out to the log and jump off with life vests. Totally reasonable. I swam out there with them, in my new Wonder Woman swimsuit, which was a gift from Kate and Emily, and I pulled a flotilla of rafts with four boys who swam-floated...you know, like you do...and Momma Christine. She provided the life vests, I provide the transportation out to the log; that's the definition of teamwork.

It's empowering to be that strong of a swimmer in a glacier-carved, and fabled bottomless lake which really and truly is cold enough to take your breath away. I know now why the Master swimmers don wet suits when they swim in this lake. Not that I swam across it, I'm not at that level, but swimming out to the log a couple of times, and jumping off the log, and helping the boys to climb up that log and jump off that log...took a lot of my energy, or perhaps I gave a lot of my energy. Regardless, it was an invigorating and empowering experience. All of it. We even had our first ever stop at Granny's Cafe for ice cream on the way home. Yup. First time ever. It was delicious and even had two pleasant surprises of bumping into old friends while at Granny's.

Friday, a power yoga class with a young woman who led a beautiful class and included Warrior II, side angle, triangle, and even fallen triangle, providing power and strength in the shoulders, legs and core. These poses helped give me a strong foundation, as well as courage and strength to head into today's MRI. It was one of those classes that the instructor says what you needed to hear, at that particular moment, and left me feeling empowered and thankful that I was able to take this time for myself.

Saturday a 2-mile walk with an old friend along the Olympic Discovery Trail, through the woods with the green summer canopy overhead, and eventually out to the Strait. It had been entirely too long since I was able to walk with her, and we were able to catch up on important stuff, and making plans for the future. We enjoyed the view of ocean, the sound of the surf, and smell the fresh salty air. We figured out we'll be friends seven years come January, when I started at the dojang. We marveled at the unique health changes, and challenges, we've each gone through during that time.

I came home from that walk and cleaned out both freezers, throwing away a lot of long-forgotten processed foods. The extra freezer was growing a few glaciers and so I took it outside and hosed it out. You know...like you do.... And vowed that this really does need to be the last time for this because defrosting a freezer drains a lot of my energy that can be spent doing other things that are healthy...like sewing or writing. Or playing video games with my kids, like we did on Sunday as a family.

Today after my MRI, my friend Florence and I are having lunch. She is meeting me at the hospital, before the test. Speaking from experience, it's really nice to have a friend be there before and after. Seeing a familiar face of a person who loves and supports me and my family makes all of this a little easier.

Distractions and support are important.

Because today there's a test.

I'm hoping that this August is easier for our family than the previous two have been. And the ones in years past have been.

I'm cautiously optimistic that when Randy and I go see the new-to-us Medical Oncologist on Thursday for the results of today's MRI with contrast that the doc says something like "your boobs are both totally awesome!" but that's not very professional. So I'm hoping he says something similar to the news my husband got a couple of weeks ago, when the Lady ENT said "there's no evidence of cancer."

That would be really lovely.

And hopefully turn my attitude about August around. 




Sunday, July 23, 2017

July 14, 2017

Wake up on a beautiful Pacific Northwest Summer morning with a mission: Get the warts on Randy's vocal cords removed. We set the alarm for 6 am in order to check in at First Hill Surgery Center at 7:15am. According to Google Maps, the hotel is a four minute walk; it's literally around the corner and less than a block to the Surgery Center (which is not the same place as First Hill Medical Center, where he had his tonsillectomy and neck dissection last summer). We had plenty of time to get dressed, get me a coffee, and get there.

Randy wasn't able to have anything after midnight. No food. No water. No gum or mints. They really don't even like you to brush your teeth, just in case you swallow a little bit of your own saliva and/or toothpaste. They aren't fucking around.


On Thursday afternoon, the day before surgery, we headed over to the Emerald City, after our Kid Sitter, Ms. G., arrived to take care of the two-legged children and the four-legged child. She's awesome and incredibly brave because she agreed to spend the night at our house. She's been with us for a while; she volunteered a lot of her time for us last summer when Randy was going through his cancer treatment. The boys worship her. We are so thankful for her. We can't leave our trolls with just anybody. As a mom of a child who has seizure disorder who is medicated twice daily with three different pharmacological drugs, two of which are given to control seizures, and one of which is given to induce sleep, we're pretty particular about who we let provide care for our boys. And this was the first time we'd left them for an overnight with a sitter in our home. Last summer, when my husband was going through tonsil cancer, and the summer before when I was going through breast cancer, the boys stayed with our close friends, Momma Christine and/or Momma Bonnie and their families. So, leaving the boys at home with a sitter for us to go to the city for an overnight with a surgical procedure the next morning, given Randy's health history and the fear that he was going to seize in the operating room, and if he did that meant he was spending the night in the hospital, so it could be that she was going to be with them for two nights...this was a big fuckin' deal.

The drive east from Port Angeles was perhaps the longest drive I've ever had going towards Seattle, and not simply because it was summer and surgery was looming. Living on the Peninsula means having to drive. But this was different. We caught the Hood Canal Bridge open for marine traffic, and there was an accident at the intersection just before the bridge on the Jefferson County side. Seriously?! So it was a double whammy, at the same spot, before even leaving the Peninsula. Through all of it, Randy did a great job driving.

Ferry ride to downtown Seattle
The ferry ride across the Sound was beautiful, and perhaps even a bit chilly with the wind. After the boat pulled into the dock in downtown Seattle and we disembarked, I drove Randy and me to the hotel fairly quickly, considering city traffic always sucks. After checking in to our room and letting the kids know we had arrived at our destination, (we called them on the phone, no, really) our dear friend Jeff picked us up and we went out for Mexican food. Then we went to Full Tilt for ice cream (I recommend the flavor Ube (proun. ohh-beh). Because if you can't eat anything after midnight, you may as well stuff as much in as you possibly can! Also, you only live once, so you may as well try the freaky ice cream that's made out of a purple yam which is popular in Fillipino dishes. No shit. It was delicious. It was way better than the Vegan Myan Chocolate bullshit that Jeff and Randy each got. Whatthefuckever, you guys. That shit was nasty. Goddamned hippies. Eatin' vegan ice cream.

Almost there....
We left the hotel early Friday morning, well before 7 am, because when you're stopping for a coffee in at Starbuck's, you know...like you do...you know it's gonna take a goddamned year...even at that ungodly hour....and headed up to the Surgery Center to check in.

After checking in, my husband and I walked through the vast waiting area that had semi-comfortable looking couches and chairs. I chose a pair of large, high-backed blue chairs with a narrow, but plain wooden table in between them, set down my 16 ounce white chocolate Americano, sat down, and pulled out the lap top. Because I'm not gonna just sit there for 90 minutes, and it's rude to leave and go shopping or some bullshit when your husband is in surgery. Right? Besides, the only thing open, besides Starbucks, is McDonald's (never!) and Bartell Drugs (later, when he's through surgery and in recovery. Because: chocolate.).

Anyway, so he goes back and they prepped him and then the nurse came to get me in the waiting room so I could keep him company. We met the anesthesiologist who was very kind and very thorough in reviewing Randy's health history. Based upon our conversation with him, he wasn't entirely sure Randy had a seizure last summer...but we all agreed there's no point in speculating about something that happened over a year ago. We both felt comfortable with the anesthesiologist putting Randy to sleep for this surgery.

Then the Lady ENT came in. I've only ever met her via FaceTime when Randy goes over to see her, so this is really the first time we've been in the same room and met formally. And she is lovely. And she's smart. And she's just gonna laser some warts off of my husband's vocal cords. She does this kinda thing a lot.

I head back out to the waiting room. And wait. And write. And dork around with my phone. And get up to pee like 12 times because my anxiety is so high. And they have free Starbucks in the surgery area waiting room, but I'll drink my water thanks.

And about 90 minutes later, the Lady ENT comes out. She's sad. Disappointed. She had to stop the surgery.

Wait. What? You didn't laser any warts off? I mean....

No, I'm sorry I didn't. Your husband has a very narrow passageway, and I need a smaller scope in order to access his vocal cords.  

I thought....

I know, I thought so too. I tried several times, with several different scopes, but was unsuccessful.

I know the real estate in his throat is limited because of the breathing tube the anesthesiologist has to use. Was that a factor?

Partly. However, but most of it is because of you husband's anatomy. It's narrow, and so I need a scope that is basically a smaller gauge so that I can get to the papilloma on his vocal cords.

Ok. So...?

So I had to stop the surgery because had I continued, I would have done harm.

Thank you for following the Hippocratic Oath. Is he ok?

He's ok. He's in recovery and you can see him soon. I'm so sorry. In my twenty years of practicing medicine, this is the second time this has happened. I feel badly that I wasn't able to help him in the way I anticipated.

Wow. So, it's a pretty rare thing?

Yes.

But of course it happens to my family.

I know you guys have a lot of medical issues. And I'm sorry for everything you have on your plate. Please know I am as disappointed and frustrated as you are.

And as he will be.

I'll need to see him on Wednesday for the post-op.

Why? You didn't really operate.... I mean, not to be disrespectful.

No, you're right.

I mean...for us to get to the city and be here today took a lot of coordination for our kids. I know you know we have a child who has epilepsy and autism, but our 8-year-old has a full arm cast because he fell off the monkey bars and broke both his radius and ulna the week before school was out for the summer.

Oh no!

Yeah. And he's in arts camp next week, and he's really looking forward to going. So for us to be here on Wednesday for a post-op when there was no op.... Do you really need to see him? Or can we take a step back from this and perhaps have a conference call instead?

Yes. There's, you're right, there's no need for you guys to make all of the arrangements you have to and travel when really it's going to be such a quick visit. We can talk on the phone on Tuesday. I'll have my office call you this afternoon to set up a time.

Thank you so much. For everything. Really.

You're welcome. He'll be in recovery for about an hour and then you can go back and see him. I'll stop by and talk with both of you before releasing him, but he probably won't remember a lot of what we discuss, because of the anesthesia.

Ok. Thank you, Doctor. I very much appreciate your compassion and dedication to my husband and my family. Thank you for your support.

It was everything I could do to not hug her.

So instead, I went pee for the 100th time, and then left the Surgery Center. I made a quick stop at Bartell's for some smoked almonds for me to eat on the way home, and some chocolate (for the kids! And me. Because I needed to do something nice for myself, so I chose chocolate. Duh!). I grabbed most of our stuff from the hotel room, walked it down the street to the parking garage and left it in the Highlander, then back to the hotel, grabbed the rest of our shit, checked out, had a wonderful interaction with a blind woman on the street, and went back to the Surgery Center, who was calling me to let me know that Randy was waking up. Dammit, sometimes I have awesome timing!

Anyway, when I went back to see Randy, he was pretty loopy from the anesthesia...you know...like you are...and he wasn't particularly happy. Which is totally understandable.

Once he was feeling like he could get going, I asked for a medical pass for the ferry so we could be assured that we would get on the next boat home, we got our shit together, which included lots of packets of saltine crackers and a couple of vomit bags, I got the Highlander, drove back to the Surgery Center and met him and the nurse in front of the building, because they wheeled him out in a chair, which is standard. I asked what they do with people who don't own a car, the nurse said they usually call a taxi or take a bus. Jesus. Can you imagine getting out of surgery and getting on a bus? I'm thankful we have a reliable and comfortable vehicle to drive home in.

We caught the ferry in the nick of time, and were both starving, but ferry food wasn't happening, and so we stopped for something at Central Market in Poulsbo. The soup bar was a welcome sight. So were the fresh flour tortillas for tacos the next night. Nothing like meal planning on the fly. We'd talked, and Randy felt like homemade re-fried beans was something he could swallow without a lot of pain.

The ride home was largely uneventful. It was a beautiful day. Traffic was pretty light, considering it was a Friday afternoon in the middle of summer, and we were heading out to the Peninsula. The boys and the dog were happy to see us, and we were happy to see them! Ms. G. said they did great. The boys and Ms. G. all loved their chocolates!

So we're on for this week. But I'm not telling you when, exactly, because I suffer superstition. And I'm  hoping that since this is the third time we've scheduled this surgery, and they say things come in threes....

Also, I have no details worked out yet. I have things brewing, but nothing is for sure. Child care. Dog care. Overnight in the city. Again. The A Team is on high alert, and for them, I have eternal gratitude.

I'm trying to see the good...but this post has gone on entirely too long. And I'm Jabbed Out!



Bus ad; when's WA DOH & AG going after Big Sugar?


You can always tell the tourists, because they look up.

YMCA

No idea what these buildings are, just a cool shot.

Friday, July 14, 2017

My Biggest Fear

"Momma, what's your biggest fear?" my son asked me one morning as I was cleaning up the kitchen after a breakfast of waffles, topped with whipped cream and fresh strawberries.

I stopped, heart pounding in my ears, he must be reading my mind. In some cultures, people with epilepsy were thought to have psychic abilities and became shaman. My son is incredibly intuitive so this is not a concept I've easily dismissed.

Of course, some cultures believe that epileptic seizures are caused by which craft and malevolent spirits, and this is also something I've not taken lightly. Sometimes I have to conjure up amazing spells to get him to not have a meltdown. And I reckon that all parents wonder if their child is possessed at least once in a while.

"Well," I said, swallowing hard and stalling for time, trying to fight the urge to cry, since I've been so preoccupied this past week with my husband's vocal cord surgery. "I have a lot of worries. But really I only a couple of big fears."

He continued to look me in the eye, and because of his autism, eye contact doesn't come easy for him. I knew he was serious. 

I went back to rinsing the dishes, water running, buying time, fighting back tears. Because what do I tell him?

That my biggest fear is that my breast cancer will return?

That his Dad's tonsil cancer will return?

That something will happen during his Dad's upcoming surgery that will negatively impact our lives forever?

That he'll have another seizure on the operating table?

Will the highly trained, very skilled, and wonderfully caring Lady ENT slip and whoops Daddy doesn't have the ability to talk again? Ever.

That we'll be in a fatal accident going to or coming home from the surgery in Seattle?

That my son's epilepsy will end up causing his death? In his sleep? Sudden Unexpected Death in Epilepsy is a real thing. And it really scares me. Really really fucking scares me. Easily top five in my worst fears.

And then there are the state of the world fears.

The fears that some people see my son as a burden on the system. Because he has intellectual disabilities, he's seen as "less than," and somehow not deserving of love and acceptance. Will they come take him away? Lock him up in a camp with other people who are seen as "less than"? As a person of Jewish decent, the whole "camp" thing leaves a bad taste in my mouth. Maybe that's why I haven't ever registered my kids for camps during the summer. 

We've had internment camps in America before. We locked up the Japanese during World War II. What's to stop it from happening again? What's to stop them from taking the people who are autistic? Or epileptic? Or people who live with any disability? Or people who have had cancer? Or have a different skin color?

Will he be thrown away by a society who now thinks that a college education, and having an intellect, is bad for America? What does that mean for my career? For my husband's career? What does it mean for our health insurance? And didn't the Senate vote take place today? My entire family is a pre-existing condition. Did it pass? I heard they didn't have enough yea votes going in...but I don't know the outcome. And it's important. Because eventually, my kid will probably end up on Medicaid. Right now, under the Affordable Care Act, we can keep him on my husband's insurance until he's 26. Thank you, Mr. Obama, for that one. Thank you for not permitting insurance companies to charge us more because we have so many pre-existing conditions and putting life-time limits on how much money my family will have to spend on all of what we deal with. Thank you.

The fear that all of that could be gone is truly terrifying for me.

Dishes in the dishwasher. Counters and table wiped down.

"What are your worries, Momma?" he asked.

"I don't know, honey. What are your fears?" I asked him.

"I'm not afraid of anything Mom," he said with confidence.

"Well, that's great, Nathan!" I said in a supportive tone.

"But, Mom, what do you worry about?" he asked again. I know he's persistent. His brain gets stuck in a loop and he will continue to ask the question unless I answer him.

"I'm worried that...the garden needs to be watered. Would you like to come outside with me and help me water the veggies?"

"YEEEESSSSS!" He yelled. "MOM! WE NEED TO CHECK MY BROCCOLI!" he continued to yell, in a very excited way. He loves broccoli. Being outside, connecting with the food he chose to grow in his raised garden bed, the water, the sound of the birds, the sun shining. All of this helped calm both of us down.

Monday, July 10, 2017

Reasonable Risk

We all take reasonable risks that we don't even think about. When we get in the car to drive to work or school, running the countless errands we all have...those are reasonable risks. There's a risk we could get in a car accident. There's a risk our child could get hurt at school. We could stop at any number of businesses and wind up being the victim of a shooting. Right? I'm not advocating for this, but this is a reality we live in. But I'm not going to stop driving, or taking my kids to school, or running errands. None of us can stop living. Or driving to and from school, work, going to exercise, the bank, getting our hair cut, running kids around, going to the doctor or the dentist or running kids to the doctor and the dentist etc. etc. etc.... We don't stop living life. We don't even think about these things as reasonable risks, but that's what they are.... Reasonable. Risks.
 

Anderson Park
We let our kids take reasonable risks. Not the "go juggle machetes" types of risks. That's not reasonable. They're not trained in Guazabara. Yet. When my older son was diagnosed with epilepsy four years ago, and only 6 months after we spent a ton of money designing and building Anderson Park in our backyard, we had to make a decision about reasonable risk. Even though the pediatric neurologist said to not let Nathan do anything unless he had a helmet on and was harnessed, because he could seize and fall and then break his neck, we decided it was more important to let him climb, explore, and engage in gross motor activities. Exercising and getting to know how his body works, especially when there's four to five inches of rubber mulch beneath him...reasonable risk. He'll most likely bounce. And he has, many times, fallen off of our swing set and gotten right back up.
 
Watering his garden with a cast? Sure.

Four weeks ago, when my 8-year-old broke both bones in his right forearm on the monkey bars at school...with only 7 days to go before school was out for the summer...I had to make decisions about reasonable risk. He is not permitted to be around water...but the garden needs to be watered...and he planted his beans, peas, and lettuces before he broke his arm. So I gave him the hose. Reasonable risk. What could go wrong? I mean, his brother isn't even outside.

This is a child who is incredibly independent. In my conversations with other moms of children with special needs, of those who have a younger child who is neruotypical, the neurotypical child is incredibly independent, too. So, I know we're not unique in that.

But what is amazing about this kid, who was taking a reasonable risk when he was at school swinging on the monkey bars during recess, is that when he was ready to stop using his training wheels, he told me so. But I wasn't ready for no training wheels. I mean, at the time he was 4, so, no, your training wheels are staying on, little dude.

However, Sir Isaac isn't one who backs down easily, (I have no idea where he gets this from....) and went into the toolbox, got a pair of pliers, and started taking off his training wheels. Ok. Fine. Let's do this.

Also, when he wanted shoes with shoelaces, I told him he was going to need to learn to tie his shoes, and sure as shit, without more than me and his dad showing him a couple of times, he was tying his shoes proficiently within 24 hours. He's brilliant. Obviously.

So, here's the hose. Go water your garden. Thanks for helping. Be careful. Have fun. You are taking a reasonable risk, my child, by holding the hose with your left hand and keeping care to not spray the water in the direction of your right arm.

No, you may not spray your brother. I want to, too. Believe me. When your cast is off, you can spray him all you want. We both will. And thanks for helping me grow some deliciousness in our garden. 

Deliciousness



Thursday, June 29, 2017

There's a no in me

There's a no in me today.

No I don't want to take you up the mountain. 

Or down to the water. 

Can you imagine if you got sand in your cast? Sweet Jesus, child! What would the doctor say when you see him tomorrow? 

Yup. He'd probably have to recast it. And you certainly don't want to do that again. I mean, if you got sand in there it would itch like crazy and it's possible the the sand could create little wounds in your skin. So, let's not risk it.

Nope. Not the lake either. 

Yup. You want to keep your cast dry. 

I know it sucks. 

I'm sorry. But really, you've gotta accept responsibility. I know you're only eight. But dude, you were the one swinging on the monkey bars. Out there at school, all being a kid. You know...like you do.

But when the doctor said no, he meant no. No hiking, no biking, no scooter, no jumping on the trampoline.

So, no. No you won't. 

And no wrestling with your brother. 

I know you want to.

Taking a shower and covering your cast with a garbage bag is one thing. But going to the a body of water, or moving water. No. No garbage bag. No cast covers. I mean, your range of motion in your shoulder is good, but...no. No is no. 

The lake will be there. The mountain will be there. The strait will be there. This is a temporary problem. Those places will always be there. We can go when your cast is off. Hopefully at the end of the July.

Let's go water the garden. I'm open to you watering with the sprayer set on "soaker" as long as you use your good arm, and you absolutely, positively, keep the water pointed away from you. 

And your brother can't be in the garden at the same time. Because obviously. That's a recipe for disaster. And because there's a no in me. 

There's a lot to do around the house. Let's check the Summer Rules list!  

We can read. You guys are participating in the Summer Reading Program, so we get to read a LOT this summer! Because we may win the whale watching tour! You never know! You can't win if you don't read!

We can do laundry. I'd still have to do laundry if my arm was broken. Shit, I was going through chemo and doing laundry. I was at the boss level of disease and still running a household and teaching online. So, I think you can put your clothes away. You know, the ones I folded for you. Yeah. Those. Both of you. I know you've got two good arms, big dude. Get it done. Both. Of. You. 

Thank you. 

Jesus. 


Oh! And if we assemble the deck box that we purchased like two years ago that's been sitting on the deck in a cardboard box...yeah that one! You'd check off like the rest of your list if we did that! 

Because we gotta assemble the deck box, then we'd get to clean off the deck, which I'm open to trading that in for ___Clean Up One Room. 

And you wouldn't have to play outside, because godforbid you play outside. On a beautiful 66* PNW summer day. Instead, we'll assemble the deck box outside! How brilliant is that?

And you guys would check off ___Made/Built Something Creative ANNNNDDD ___Helped Someone In The Family at the same time! How awesome is that? 

Ok. So, there's a yes in me for computer time if you cooperate and are mostly nice to each other and me.



Back deck before













They really did help me! (350 lb. wt. limit)
Back deck, after






Sweeping too? Yes, please! Great idea!

Thank you both for your help.

Yes, boys, you earned computer time.


Monday, June 5, 2017

I Asked

So, we're sitting in the Radiation Oncologist's office, you know, like you do....

Kinda glad to see him...kinda not.

He's the one responsible for, essentially, being a main player in the medical team that saved my husband's life last summer. 

And he kinda looks a little like Paul McCartney.

He could've been a Beatle.

Or a child of a Beatle, anyway.

He's easy on the eyes.

I wouldn't kick him out of bed for farting. 

Don't judge.

Just because I'm on a diet doesn't mean I don't look at the menu.

I got eyes.

Anyway....

The Radiation Oncologist walks in, and he's got a very casual bedside manner, and he's incredibly smart. So we're chatting away and he does his exam and he reviews the notes from the Lady ENT and we talk about Randy's upcoming throat surgery, which is scheduled for later this month.

And when he said, "Do you have any questions, Mrs. Anderson?"

You bet your sweet ass I have questions.

Here's the thing, Dr. J, I've got a pair of kids at home who are tapped out. My family has been dealt a lot of life, particularly in the last two summers.

Nodding from the doctor.

My 8-year-old looked at me point blank and said "Mommy, I'm afraid I'll get cancer. I'm afraid my brother will get cancer. And I'm really afraid that you and Daddy are going to get cancer again," and so, I need to know, Doctor.

More nodding from the doctor.

He's a very attentive listener.

I know you can't say 100% for sure until the warts caused by HPV on my husband's vocal cords are removed and biopsied, but in looking at the research, in your experience, with your best gut reaction on this, speaking from an epidemiological perspective, what are you thinking? Do you anticipate that this is another summer full of cancer?

I do not, Mrs. Anderson.

Silence from us.

I know each of you, as well as your boys, have been through a huge...amount of...major life occurrences...in a very short amount of time. But I do not anticipate that you'll have another summer full of cancer.

We have the PET scan from the end of February and the results were negative for cancer cells. We have the fact that your husband's taste is returning, his saliva production is increasing. On a visual exam of his throat, it looks really good.

Exhale.

And, no, I cannot be 100% certain until we get the biopsy. But I can say that I'm pretty certain that this isn't cancer of the vocal cords.

Ok. Thank you, Dear Doctor, for you have helped to instill hope into my heart.

A little bit later, as my husband and I sat eating Mexican food for lunch, enjoying each other's company, we agreed that the Radiation Oncologist did not say what he said to pacify us. We do not feel that the Lady ENT said what she did to placate us. We recognize that several friends have been diagnosed with cancer who kept receiving misdiagnoses. And our hearts break because of the countless situations across the globe where people are dying because of this fucking disease.

My husband, who is a very logical thinker, goes back to the fact that we don't have data about the warts on his vocal cords. So, for now, we're continuing to focus on what we know: surgery is coming. We're trying our best to remain calm and centered. And enjoy each day.

The next step, before surgery, is for my husband to get approval from his neurologist before receiving sedation from the anesthesiologist. Because the last time my husband went under for surgery was June 30, 2016, and that could have gone much better.

So, today, my husband was in Seattle, seeing his neurologist, who ordered an outpatient EEG be done before surgery. The EEG is scheduled for Friday. An electroencephalogram (or EEG, thank god for acronyms, right?!) is where they hook your head up to about 20 electrodes--and a few on your chest to monitor your heartbeat and respiration rate--and they are looking for seizure activity. I've been through countless EEG's with our older son, and all I can really say is, "thank you iPad." It doesn't hurt, but glue and hair don't really mix well. We're both thankful my husband is bald. 

My husband had an outpatient EEG last year, after his seizure in the operating room. Last time, the results were normal; and the neurologist anticipates the same this year.

The thing about EEG's is they totally suck because you cannot sleep more than 3-4 hours prior to the test.  No coffee. No chocolate. No soda. No caffeine. They are looking for abnormal brain activity...and caffeine makes our brain kinda active...and it can skew the results. And ain't nobody got time for skewed results.

So, he'll go over on Thursday and stay up late and then get up super early and go to the hospital for his 7:45 am appointment. The test should take about 90 minutes, and when the EEG is done, if he feels like he needs to, he can go back to the hotel, and take a nap. If he feels ok, then he'll catch the ferry home. He can sleep on the boat.

The neurologist said we'll have the results the next business day. So, we are cautiously optimistic that we'll know for sure surgery is a go on Monday, June 12th. But, let's be real...more like Wednesday, June 14th.

During finals week.

Three days before commencement.

No pressure.





Thursday, May 11, 2017

Of Course, But Let's Hope Not

Of course.

Of course you're having another surgery.

In your throat.

With a laser.

Can we stop, please?

Can we just please stop the fucking ride?

Let's hope it's not cancer.

Again.

Let's hope it's just warts caused by Human Papillomavirus.

On your vocal chords.

That the goddam backcountry half-assed Poulsbo ENT thought were polyups. Or nodes. Nor nodeules.

He never said warts. 

But the Lady ENT never said warts either. She said polyups. Or nodes. Or nodules.

And The Man ENT, when he removed your tonsil and sliced your neck open and took out lymph nodes just last May, and we asked about the polyupie-nodey-noduley-thingies on your vocal cords but he couldn't take them out because that's not his area of expertise and he'd leave it up to the Lady ENT.

Wait. What the fuck? 

Because if a throat is like a vagina, and a tonsil is like a cervix...I don't go to see one doc for the front of my vagina and a different doc for the back of my vagina. I mean, it's all one vagina. So, isn't all one throat?

Goddamn healthcare system is too big and too specialized and that's where you thank Baby Jesus for the Master's Degree in Community Health Promotion, because you know how to work in and with the system. But it shouldn't be this fucking hard.

"Nobody said it was easy. No one ever said it would be this hard"

The bottom line is that no amount of study, level of education, faith in God, or lack there of, can prepare anyone for what I've walked through. What we've been through. What the boys have been through.

What we continue to go through. Just. Fucking. Stop. Already. Please.

I've prayed. I've bargained. I've cried and begged and ranted and yelled and screamed and lost sleep and lost weight and have had no appetite and ate even though I wasn't hungry because it had been several hours since I'd eaten a graham cracker with peanut butter....

I've questioned my belief system, the way I was raised, the tattoos I have, the choices I've made...the people I've had sex with...and thankful for the ones I didn't....

I've practiced yoga, and I've journaled, and I'm following the rules to the best of my ability, but I'm having to make new rules for me and my husband and my sons as we go along.

Yet still it continues. The health issues that plague my family are enough to make anyone feel like driving off a cliff. Epilepsy. Autism. Breast Cancer. Tonsil Cancer.

And when my 8-year-old looks at me, pleadingly, and says, "Mom, I really want to make it through this summer without cancer."

All I can do is look him in the eye, be honest, and say, "I want that, too honey," and then wrap him up in a the best Momma hug I can give him, as tears run unashamed down my face and land upon his beautifully dark hair. 

The boys don't know you're having surgery next month. They don't know the ideas I'm generating. The planning. The talking with close friends who we trust to medicate with proper doses and at correct times. The phone calls, texts, emails that have started. The hotel reservations. The dog sitter.

The anxiety, though, the boys know it's there. I had a delayed reaction after our meeting with the Lady ENT on Monday (thank you FaceTime for letting me be there in the best way I could). After I picked them up from school and we got home, I dissolved into a hot, wet, dripping, steamy pile of mush on the kitchen floor.

As I was preparing their snack.

I'm classy like that.

The Lady ENT will remove the warts and have them biopsied. Surgery will be at the end of June, after school is out. 

I am thankful, my dear husband, that you are confident that your cancer hasn't returned. I know the PET Scan you had 6 weeks ago indicated there was no cancer in your throat. I am doing my best to be optimistic, too. But, I am more frightened now than I was when I received each of the diagnoses our family has received over the past 6 years. I love you, and am terrified for you, for us, and our children. 

Fuck you cancer. And HPV. You are one sneaky little bitch of a virus. Even though they can't really get them till they're 11, both of my boys are ready for their HPV vaccinations so they don't have to go through this. They watched the hell their father went through last summer. We've had deep discussions with them about the fact that even though Daddy was too young to be part of the generation that routinely had their tonsils taken out, and he was too old to get the HPV vaccine, if there was one thing I could change for Daddy is that he didn't have to go through tonsil cancer treatment.

Of course I will do everything in my power to not have my kids get a disease. And let's hope that the blog posts, and the education, and the science is enough to convince people they can prevent their own children from having to contract the disease.






Sunday, May 7, 2017

Interesting Day

Today was an interesting day in that I learned, at about 4 am, raccoons eat bird seed.

I also learned, that if you bang on your own bedroom window, five times, really quickly, and rather loudly, and then shine the light from your iPhone onto that racoon, they get scared and jump.

But they're brave, so they come back.

Because, really, a lady at four am banging on her own bedroom window, while her husband whisper-yells, "NOT SO LOUD! YOU'LL WAKE THE BOYS!" while you're standing on her deck railing and hanging from the bird seed feeder, stuffing your face, isn't very scary.

But, when I got outta bed and got my Bogs on and stomped on the deck, that fucker took off.

I had my Maglite.

I left Abby in the house, because, as wonderful as she is, she's not particularly stealthy, and we didn't need her to get tangled up with a goddamned raccoon. Not that I need to get tangled up with a goddamned raccoon...but I have the ability to travel a bit more on the down low than a 9-year-old black lab at four o'clock in the morning.

BAM BAM BAM!!!!! I stomped out the back door and towards it. I heard the varmint scramble down the wooden posts and skirting of our house, squealing, or chirping, or whateverthefuck kinda noise they make, and scurry up a nearby tree.

Heh. Bitches. Wake me up at four in the morning.

I could see the glow of it's eyes in the tree, and for a second, because I come from a long line of paranoid Jews, and I'm a firm believer in The Boogie Man, The Closet Monster, and The Thing Under The Bed, my heart jumped into my throat.

But then I took a breath and flipped that raccoon off and slowly backed up, facing it and keeping my Maglite on it, and walked down the side of the house to the back door.

I took my boots off at the door, like you do, and headed down the hall to our bedroom, and got back in bed.

And promptly heard the party start up again.

Bastards.

Assholes.

I'm trying to fucking sleep, here!

I threw back the covers and announced: "I'm going to pull the seed feeders," to my husband, who loves me very much, is very tolerant of me, and knows that the best thing to do is just let me do get the seed feeders and then go back to sleep.

Back down the hall, Bogs on, grab the Maglite, and head back outside. STOMP STOMP STOMP down the back side of the house, grab both feeders and brought them in. Then grabbed the other two feeders on the front side of the house and brought them in, because you may as well get all the food outta the area. Don't do a job half-assed. Only whole-assed for the Andersons! Also, I don't need a goddamned raccoon in the back yard when Abby goes out there in a couple of hours.

In the morning, I filled the boys in about the raccoon and why the seed feeders, which were sitting by both the front and back doors, but that they had, perhaps not shockingly, observed yet. They were busy watching a soccer match. I told them that later we'd be outside and they could go on raccoon patrol.

Today was a beautiful, bright, sunny day, and we spent much of the day outside, working in the vegetable garden, and hauling compost. When I asked the boys to help out by peeing off the side of the deck near where the raccoons were at 4 am, they were more than happy to help. They also peed near the compost pile, just to be on the safe side. And they took a hike in the woods and probably peed all over the place, like boys do.

Whatever. Thanks for helping out. Seriously. You guys rocked it.

So, now, for a while anyway, the seed feeders are sleeping inside.

Working hard

I said, "Please get a hat on" but wasn't specific about a sun hat
Zen moment at the compost bins

Team work moves compost!


It's hard being him....

Saturday, April 29, 2017

Birthday Eve

"Mom, those are bows. Not giant flies," he said to me as he drew his last picture of age 7.

Tomorrow he's 8!

How do you do this, child? Because drawing isn't my area of expertise. But you, son, you are talented.

 "I can tell," I say. "You've really been practicing a lot. How's the new mechanical pencil?"

"It's pretty cool. Thanks, Mom."

He found an orange mechanical pencil the other day after school, as we walked across the parking lot. As usual, we were the last to leave. The sun was bright and warm, but the wind was whipping in off the straight, blowing at a minimum of 20 mph, but gusting much higher. 

I know because I could feel the wind blow in my hair. Don't take that for granted. There was a time that my hair used to blow in the wind and I'd feel it all the time and I'd get pissed when it whipped me in the eye because that shit hurts! I'd be trying to get a goddamn hair tie or a scruncci or a whateverthefuck I could get my hands on and in my hair and had a messy bun before there was such a thing. At this point in life, I don't have the time or energy or patience to let my hair grow in. I don't know if I'll ever grow it out again. Cancer has a way of slapping you in the face with a feeling of deep uncertainty.

So he found a bright orange, mechanical pencil, with a 0.5mm lead. I keep telling him there are benefits of having awareness. Of seeing details. Of being quick and observant. Of being short, because if you're lower to the ground you can see things on the ground. How amazing his brain is. How different. The differences between the two of them. And of course there was an issue with the pencil as soon as we got to the car.

Because also as usual, his older brother was trailing behind us, and every few steps I'd have to stop and yell a variation of "hurry-up-come-on-let's-go" and then he'd yell "MOM! Parenting's like pushing rope!"

Yes. Yes it is. He gets that from me. The humor. That's all me.

So, the little dude is gonna be 8 tomorrow! Sweet Jesus, how time flies.

Unless you're in my family. Then it drags like a motherfucker. Major, life-altering, traumatic, health-related events will do that to a person. More than I ever anticipated. More than I ever studied. Nothing can prepare a person for any of it. What is the lesson? I try to be easy on myself. "Do. Or do not. There is no try."

Yes. Exactly. Stop trying so hard. Do. I express myself. I teach. Maybe I need more yoga. And more sex. And walking. But not walking and sex at the same time. Humor. Gotta have humor. I let the good in where I can.

I bumped into a friend today, when my older son and I were out running errands, including a Lego run, where he purchased a gift for his younger brother with his own money (what?!), as well as a quick look for 0.5mm lead that I couldn't find so I got a 2 pack of mechanical 0.7mm lead, and the pencils were green and blue, which is a major win because each child gets his favorite color. We also did a grocery run, a post office run, a pharmacy run, and Swain's. Because they have everything. Including one of the Ducks

Yes, you absolutely can have your picture taken with the duck.
We visited for a few minutes, and then my friend kinda summed it up when he said, "Man, your family just has a lot of bad luck."

Because that's one way to look at it.
 
And I said, "Yeah, that's one way to look at it. But we keep moving forward." Because, really, what else can you say? And, what else can you do?

And my son said to our friend, "Wow you've got a lot of popcorn!"

Because Swain's has popcorn. Obviously. They have everything.

And, no shit, this dude had like 8 bags of Swain's popcorn, stuffed into two plastic bags. And he reached into one of the plastic bags and gave a bag to my son, and offered one to me, which I politely declined. I have some self-control. Not much, but some. 

Anyway, self-control. Super important for 8-year-olds to learn. Hopefully this year will be joyous for this child. Because when I look at him and what he's been through, he's got a shit ton of life that's happened to him.

My heart hurts for him because his normal is high stress. He's a child who has trauma. And I know what the research says about a high stress environment on a developing brain. And it terrifies me for him. So I don't read the statistics. I did when my older son was diagnosed six years ago with epilepsy, and I know I'm one click away from going down a very deep dark rabbit hole. And you don't bloody your fingernails crawling out of the epilepsy rabbit hole to be thrown into the autism rabbit hole and the breast cancer rabbit hole and the tonsil cancer rabbit hole, just to voluntarily throw yourself into the negative health implications of trauma and stress on the developing brain rabbit hole.

So, my beautiful boy....

My fun-loving, clever, quick-witted, athletically talented, super-smart, artistically driven, drama-king, flirtatious, brave and courageous, mathematician, who is full of kindness and love....

May this year's trip around the sun grant your wishes and bring you joy. May you find wonder and excitement in each day. May you continue to hug me and your dad. And tell me you love me. Because I love you, too. 


6 weeks old; hiding out in the bathroom from his brother


All my love always. Lots of love and hugs and kisses.
Love,
Mom
xoxoxoxoxo

Sunday, April 23, 2017

Swallowing Pills

My older son was diagnosed with seizure disorder when he was four years old.

When he was first diagnosed, the pediatric neurologist immediately put him on a drug to control the seizures, which is called Depokote, and is known to cause liver problems. Possibly. So we had to have him go to our local doctor's office, get his blood drawn every three months to monitor not only the level of medication in his blood, but to make sure his liver was functioning properly. Then our doc's office would fax the lab results to the pediatric neurologist, and I'd pick up a hard copy, just in case, and because I'm that mom, before we'd go to the children's hospital in Tacoma for the appointment with the pediatric neurologist. I'm thankful our family physician supported us doing this, because nobody's got time to drive 2-1/2 hours in one direction for a simple blood draw.

We had to medicate our son twice each day. So, we mixed that shit up in ice cream.

Because, what 4-year-old is going to say no to ice cream twice a day?

Rigth?!

When he was six, our son was diagnosed with autism spectrum disorder. Yes, he's vaccinated. No, his vaccines didn't cause his autism. And if you're going to argue, then please stop reading right now. And fuck off. Because that's not the point of this post.

Also, all that shit was proven to be falsified.
 
Anyway, the point is: medication.

Over the past six-and-a-half years, my husband and I have become quite skilled at breaking pills, crushing pills, mixing meds, tracking side effects of the now seven different pharmaceuticals, along with various combinations of pills, which is known as a cocktail.

Most of the medications we've tried to keep our son's seizures to a minimum have come in the forms of pills, capsules, or liquids. One medication we tried came in either a liquid or a gel cap. Based upon the fact that our son couldn't swallow pills, we chose the liquid, since, at the time, our child wasn't really old enough to understand. And, going with our new pediatric neurologist's advice, who said it is really difficult to get the gel outta the gel cap.... Yup. We chose liquid.

Which was brilliant until our son decided to not drink it.

So I called Seattle Children's Neuro...and we got the gel caps. And lemme just say, it really is a fuckin' mess to get gel out of a gel cap.

Even if you use a really really really sharp quilting needle.

On the upside, we switched meds, since we never were able to effectively use that medication because we couldn't get it in him.

No, I don't remember the name of the medication. Sorry. Yes, it's in the attic somewhere in a box with all the other medical records. We've tried so many different meds to control seizures...and really...when your child's pediatric neurologist, who you know cares about your child and your family says, "Well...your son didn't really read the book on how to most effectively have epilepsy" and "he has a rare form of epilepsy called Lennox-Gastaut Syndrome" and "he's not likely to out grow his seizures"...no matter who you are, and how optimistic you are, you start to wonder if he'll ever be able to do certain things...like drive...or take a shower alone...or swallow the pills his brain depends on...so that his brain stays on and he doesn't loose consciousness for 2, or 3, or even 4 or 5 seconds...10 or 20 or 50 times each day.

He's had more than 50 seizures a day. When he was little, and before we knew what we were dealing with...he'd have hundreds of 1-3 second mini seizures. Hundreds. Where his eyes would flit back and forth. He'd sway, like a tree in the wind. But I didn't know. I didn't know he was seizing..... But that's his epilepsy. 

An EEG confirmed it when he was only four.

But now he's 10-1/2.

And can swallow pills.

No shit!

His dad and I are beyond excited! And we are incredibly thankful to his Special Education teacher for teaching him. She's quite aware of the fact that my son takes meds, and what they are for.

He is currently on three different medications: two are for seizure control, and he takes each of those twice a day. One is for sleep, because he literally cannot stop his brain from thinking and talking and doing. And, when you are a person living with epilepsy, regular sleep is vital because if he doesn't sleep, he seizes more, and that's typical in people who have seizures. If he gets adequate sleep, like 11 hours a night, then he seizes less. He requires that much sleep because he seizes. It's a total chicken-or-egg situation.

And he's tired a lot because his brain works harder than mine to get through the day.

But he's swallowing pills!

No more mixing them in apple sauce. Or pudding. Or ice cream.

I mean, what 10-1/2 year old wants to eat medicine flavored anything?

Right?

And so I have a little hope.

Because his pediatric neurologist, who really does know his shit, said that most kids don't swallow pills till middle school, because they see other kids doing it and they feel a little peer pressure.

So, tomorrow, I'm calling Seattle and letting them know. And asking for a new 'script for gel caps.

Thursday, April 20, 2017

They earned it!


We had ice cream for lunch! They earned it! So proud of my guys!

Honestly, I'm also proud of me. I'm taking the advice my therapist gave me years ago, and recognizing what I did. 

I loaded them up everyday. I drove them to the pool everyday. I worked with them as a team. I created a happy environment for us. 

So I had ice cream, too! 









Thursday, April 6, 2017

Ice Cream for Lunch

I'm open to that.

Ice cream for lunch.

But here's the deal: we're going to the pool, for swimming lessons that you said you wanted to do each day of the week for spring break.

And we are to arrive on time.

All five days. 

Yes. It's a class. You're having a lesson. Every.single.day. For thirty minutes.

It's gonna cost me and Daddy 50 dollars to get this done. Which, really is a song. No, Nathan. It's an expression. Please, Isaac, yes, I'm looking into drama camp. But we're talking about swimming. Pay attention. 

Because I'm totally down for taking you guys to the pool every day for a lesson if you guys are down for it.

But here's the deal: if you choose to not go, it will cost you five dollars per class. Right. You pay me and Dad five dollars. Per class. Yes. Just like Hapkido, which is actually eight dollars per class. So, that's why swimming is a song, because it's less expensive. It's just as important. Yes, Nathan, parenting is like pushing rope.

Got it? Five dollars if you miss. Unless you're sick, then I'll cover the cost of your class. Right. Five dollars is a lot of money. So we want to be sure to get there on time and swim and listen to the teacher. Right?

Yup. That's a lot of Abby poop to pick up. I'm really thankful we have a big backyard so that we don't have to pick up Abby poop a lot. Yup. Everyone poops. And she's a big dog, so she makes big poops.

And what's awesome is that when you feed her, she goes outside and makes a bunch of poops and then you get to pick it up and earn ten cents per poop. So, really, when you feed the dog, it's like you're guaranteeing yourself some money. It's an awesome return on your investment.

But let's talk more about swimming. Let's make a social story so that Nathan's autism doesn't get too big and he gets overwhelmed and all hell will break loose and then nobody will be going anywhere, ever.



So, we sat down and created a social story in order to try our best and be successful. Here's what we came up with.


Isaac, my perpetually planning child, I don't know where we'll go for lunch on Friday. Let's figure it out as it gets closer. I don't know if we'll go to Jimmy John's, Nathan. I thought you wanted to go there when you earned your next belt promotion.

Oh! I know! Let's take one day at a time and see how we're feeling. I mean, you guys are on spring break, which is a vacation from being at school, so since we're on vacation, maybe we'll have ice cream for lunch!

Yes. I know your heads just exploded because I said we'd have ice cream for lunch. Yes. I'm seriously open to that. But here's the deal: we've got to follow the social story, and most importantly, we all need to earn five check marks.


Sunday, February 26, 2017

One Good Scare

As a breast cancer survivor, I get mammograms frequently. On my right breast, the one that had cancer, I get a mammo every 6 months; on the left, as-of-now-cancer-free breast, I get one every 12 months. And my mammograms are 3-D. So they're really not messing around.

On November 16th, I went in for my 6-month mammogram, and the Radiologist found two "new and unusual lumps" in my right breast, on the right side of the breast. What caused extra concern was that these two lumps were close to the surgery site from where the lime-sized tumor was removed back in March 2015. These lumps had never appeared on any other mammogram or ultrasound.

Fuck.

So the Radiologist ordered an ultrasound, which was done immediately. Like, stay in your gown, grab your clothes, and walk across the hall type of immediately. At least I didn't have to wait. Given my health history, they were not fooling around. The ultrasound showed that, indeed, these were "new and unusual lumps" and the Radiologist ordered an MRI with contrast.

Double fuck.

I left the appointment shaken up big time. In tears. Fortuitously on my way out of the Imaging Department, I bumped into Stacie, my first Port Angeles Friend; she works at the hospital. All I had to do was look at her and she knew. Stacie is an incredibly talented woman, but I know mental telepathy isn't her strongest super power, so I verbally filled her in.

And then I went home and called my Medical Oncologist's office because the order for the MRI with contrast needed to come from her. Get on it. Get that goddamed ball rolling. I'm a triple-negative breast cancer survivor turned possible patient in the last 45 minutes. Hurry up. I had an appointment with her coming up Tuesday November 22nd; two days before Thanksgiving. I had three business days to get a bilateral MRI with contrast done and read before seeing her.

Mother fuck.

Meantime, the backstory, if you'll kindly recall, was that I was the only person that can drive in my house because of Randy's tonsil cancer--and the fact that he had a goddamned seizure when they were placing his chemo port. I'm also just coming off of being sick to the point that the boys almost didn't make it to school for a few days because I was so weak and driving was difficult. All I wanted was to feel better. I was looking forward to celebrating my birthday and one year of being done with all treatments--which happen to be on the same day. Thanksgiving was coming. Christmas was coming. And then there's the entire autism thing and trying to keep life as calm as possible during the holidays.

So, after a lot of meditation, soul-searching, and discussion with my husband, I decided to not have the MRI with contrast.

Wait. What? 

I kept referring to the facts:
  • the lime-sized tumor that was removed from my breast on March 20, 2015 may have been the biggest baddest type of breast cancer a young woman can get, but none of my lymph nodes were positive for cancer
  • I completed all my chemotherapy
  • I had 21 doses of radiation shot into my breast
  • my Radiation Oncologist said she shot my right breast so full of radiation that the chances of something growing in there was incredibly slim
  • my PET scans and my CT scans all showed no cancer cells post treatment
  • I know my breast is at risk of lymphedema if I don't massage it regularly like the Physical Therapist/Lymphedema Specialist said to; and I do that shit twice a day because it's just what I do. 

I really intrinsically felt that the lumps were of a lymphedema nature. Call me crazy. But I know my body pretty well. My hypothesis was that if I did a deeper massage on the lumps, they'd go away. Cancer doesn't go away when you massage it.

And, so you know what lymph does in our body--it is part of the lymphatic system, a key part of our immune system. The lymphatic system helps white blood cells (and proteins and a bunch of other stuff) travel through our body. White blood cells are important because they fight infection. We have hundreds of lymph nodes all over body; our spleen and tonsils are lymph nodes. Many of the nodes are near the surface of our skin. In order to prevent lymphedema in my breast, I do these massages, which were tailored for me by a Physical Therapist/Lymphedema Specialist, who happens to have spent her professional life helping cancer patients not get lymphedema. And lymphedema is not pleasant. I have times where my right breast becomes really hard...it feels like a goddamned brick...especially when compared to my left breast...which feels like a breast. And my right breast gets really heavy and lots of pressure builds up from the inside. It hurts. So it's incredibly important to prevent lymphedema of the breast. If we move, lymph moves. So exercise is important. And so is drinking lots of water. The more hydrated we are, the healthier our entire body is, not just our lymphatic system.

So, I decided to not have the bi-lateral MRI with contrast. Not right now.

And really, the Radiologist, his entire job description is "order more tests" because that's what they do. And he looked a little like Dick Cheney

Not that I made my entire decision on the idea of my Radiologist looking like the former VP.

Anyway, I met with my Medical Oncologist on November 22nd and we discussed my health history, my current state of life, and then proposed we repeat the mammogram and ultrasound in 2-3 months. She happens to by my husband's Medical Oncologist, too. So she knows we deal with a lot of heavy shit in life. She agreed that doing the MRI can wait; and ordered a repeat of the mammogram and ultrasound in 3 months. On the condition that I do the deeper massaging of my breast regularly. And lots of yoga. And drink lots of water and eat as healthy as possible and go for my acupuncture treatments and go for my massages. And on the condition that if the lumps are still there on February mammogram and ultrasound, we do the MRI.

Also, every three months, my Medical Oncologist checks my blood and my labs have been coming came back stellar. Like, hang a gold medal on those reports, type of illustriousness. My lab results at the meeting with my doc were awesome.

So I massaged. And massaged. And massaged my breast. And did yoga. And drank water and ate healthy. And did everything right. And the new and unusual lumps started to get smaller. Randy even agreed. It's important, in this case, that he feels me up a lot.

But maybe it's my imagination. I'll know more in three months. Get through one day at a time. Get us through the holidays. Get Randy back in the driver's seat. Get them all off to school.

It's been three months.

I had the repeat mammogram and ultrasound on Thursday February 16th.

The "new and unusual lumps" that were found on November 16 were "significantly smaller and nearly gone" so no MRI with contrast. YES!!!

Not so fast.

The mammogram showed there was another "new and unusual lump" near the bottom of my aerola, in the 5 o'clock position. And the mammo tech, who was absolutely lovely, used so much pressure on the mammogram that I ended up having some kinda fluid lean from my nipple. I didn't feel any pain when my DDD size boob was almost as flat as a pancake because my breast is so dense from all the radiation, there isn't a whole lot of sensation there anyway. In a mammogram, it's a radiation perk. In my sexuality, it's rather depressing.

Keep your gown on, let's go across the hall for your ultrasound, Mrs. Anderson. This is your ultrasound tech (a lady). Please lay down and make yourself comfortable.

Dick Cheney, enter stage left.

He doesn't like the "new and unusual lump" near my areola. Or the leak from my nipple. He doesn't like the thickened skin near the "new and unusual lump." Or the indented nipple. Yes it's new. Yes I can feel the lump. It's been there a couple of weeks. Ever since I sat in a training for 6 hours to help other special needs families in my community. I had a bad case of lymphedema and increased my massages and yoga. No I'm not able to walk outside. Have you seen the snow? Yes, I've been wearing the foam chip pads the Lymphedema Specialist/Physical Therapist gave me, even though my boob looks like a cantaloupe when I take them off. And a sports bra. The counter pressure helps decrease the pressure. And sometimes, I wear my bra to sleep.

Needle biopsy.

Goddamn mother fuck.

Tomorrow? Friday February 17th at 8:15 am at the hospital? Yes. I'll see you tomorrow. Will I have the results before I see my Medical Oncologist before I see her on Thursday February 23rd? The same day Priya and I are supposed to be in Olympia for me to receive that award from the State of Washington.

I went by myself to the biopsy. I'd been through it before and it was not as scary the second time. And, no, I don't need everyone to stop what they're doing to be there. I need to be alone for this one. But thank you, everyone, who offered.  

It takes 48 hours to get the results. Right. Holiday on Monday. President's Day. Tuesday afternoon? Probably Wednesday.

Jesus.

Thank you Doctor.

Wait. What just happened? Do I have cancer again? Fuck. I don't want to go through this again. Please. Please universe, have a little mercy. On me. On my husband. On the boys. Please. 

Stay busy. Three day weekend. Take boys to two birthday parties. Keep cancer out of your mind. Talk to Priya, who suggests we respectfully bow out of the dinner in Olympia. Priya is brilliant. She has a PhD in a hard science. I don't know which hard science, but I know Priya used to work in a lab for a pharmaceutical company. She's a bad ass. Yes, let's not go to Olympia. I don't want to sit in the car for over 5 hours of travel there and back. And sitting in a formal ceremonial dinner, regardless of the results I get on Thursday, isn't mentally something I can do right now. I want to be home that night. I don't want to sleep in a hotel room. I'll call on Tuesday. I've had the appointment with my Medical Oncologist for 3 months. I found out about the dinner and the award last month. One thing has to go. Bye-bye awards ceremony. They can mail me my award.

The little dude ends up with a scratchy throat and a low-grade fever Sunday afternoon and Monday. He stays home with me on Tuesday. It was helpful, actually, to have him home that day. Momma Teresa came over and she is a goddess in her own right. We've been friends for about 10 years; her daughter is 6 months older than my oldest son. She is a professional house cleaner, and when I was diagnosed with cancer 2 years ago, Momma Teresa decided she'd clean my house every other week, for free, because she loves me and my family that much. And pretty much every other week for the past 2 years, Momma Teresa has come over. I agreed to this on the condition that sometimes she will not clean and we will only talk and have lunch, because sometimes I need my girlfriends. She was gracious enough to extend her offer when Randy was diagnosed with tonsil cancer...but I now pay her; she's a professional business woman, and I want to honor the deal. Besides, until I hear otherwise, I'm free of evidence of disease. I filled Momma Teresa in as we changed the sheets on the boys' beds.

On Wednesday, the day before I was to meet with my Medical Oncologist, her nurse called me, and left me a message saying they had "good news about my needle biopsy." ARE YOU KIDDING ME!?!? Call back immediately! Voicemail. They call me back. Voicemail. GODDAMNIT! I call back. Good news. "Benign scar tissue" says the nurse. Hallelujah! Thank you universe!

Thursday, Priya picks me up and we head to the appointment with my Medical Oncologist. Since we were going to go to Olympia, she had the day off anyway, and I know as a scientist, she secretly wants to go to a meeting with a cancer survivor and talk to a Medical Oncologist. And, Priya is East Indian. And my Medical Oncologist is East Indian. I was totally being a Matchmaker. I was also going to be the dumbest white woman in the room, and I was totally ok with it.

My Medical Oncologist, the lovely woman who helped save my life, said in her East Indian accent, "Well, it certainly was one good scare, wasn't it?" Yes, Doctor. Yes it was.

She said yes, we do need to do the bilateral MRI with contrast, but not until August, which is 6 months after the biopsy. They're watching it. I'm doing my best to not worry about my "new and unusual lump" at the 5 o'clock position at the bottom of my areola. No small task, given the last two years. Because, basically, as a cancer survivor, every single twinge, no matter how small, I wonder if it's cancer. It's typical in both survivors and care givers. Eye twitch? Cancer of the eye. Stub your toe? Cancer of the toe. Not kidding. Cancer creates that type of anxiety.

After the appointment, Priya was so excited about what the doc said, we had to find a place to sit down so she could jump on Google and look up some stuff that was explained to me, that was way above me, even though the doc explained it at a level that a second-grader could understand but went in one ear and out the other because all I really heard was "benign scar tissue. The 'new and unusual lump' is not cancer." It's not because I don't care. But I don't need to know about HER2 and estrogen receptors and progesterone receptors and blah blah blah. I need to know that, although my triple-negative cancer has a high probability of recurrence, my cancer has not come back. I need to know that I'll get my port flushed in 6 weeks. I need to know that I'll see my Medical Oncologist again in 12 weeks, and the only test I'll go through before is a blood draw. And I'll see her again in August, after the bi-lateral MRI with contrast. And after that, we can talk about the possibility of having my chemo port taken out, which my Medical Oncologist wants to leave in for two years after I'm done with all treatments...which means November. In the mean time, I'll live with the large piece of plastic and rubber implanted in my chest, above my left breast, underneath my bra strap, that has a catheter to my heart. Because if my cancer does come back, please universe, don't let this happen, then my doc can start chemo immediately.

And yes, this is a terrifying thought.

But it's also my reality.

I am cautiously optimistic that my one good scare is good enough.