Choices

The information I found about the University of Arizona's Center on Aging...I never sent it to my parents.

Well, I should say I haven't sent it yet.

Or any pictures of my trip to Tucson.

I made a choice.

It's printed. It's on my desk. I have an envelope.

I have yet to print pictures, address the envelope, or mail that shit down there.

Why?

Because I have a lot on my plate.

Not because I'm a bad person.

Not because I'm an irresponsible daughter.

But because when I got back to Port Angeles, I had a little post vacation depression.

Because who DOESN'T want to say at Ventana Canyon and drive that goddamned convertible camaro around?!

Right?!!

When I got home, it was spring break for Isaac, so it was full time mommy mode.

AND, when I got back, it was the first week of the spring quarter for us at the college. So, even though I did all my prep for the quarter before I left...I was replying to students, interacting with them, and, well, I was working.

I've spoken with my mother a few times since I've been home.

The most recent time was on Mother's Day. Dad wasn't there; he was at the pool, getting his exercise, taking care of himself, which I know he needs to do. So I asked her if she'd been to the doctor yet.

"About what?" she asked, surprised by my question.

"Jesus Fucking Christ, Jill!" I screamed in my head. Clearly she'd forgotten. I know that when a person is starting to experience a lapse in memory issues, they are typically surprised to questions they are not accustomed to being asked. My question was out of the blue and not part of her daily script.


"About your memory issues...?" I asked as gently, but as firmly as I could. "When I was there in March, we talked about you seeing your doctor....about getting a referral to the U of A's geriatric medicine program...remember?"

She hesitated. Not too long, but enough that it was obvious to me. She was thinking back. Did she go to the doctor? What did the doctor say? I could almost feel the wheels turning.

"OH! Right! I did. Yes. Yes, I did," she said, clearly proud of the fact that she remembered. And that she'd gone.

Or was she making it up? Was she remembering incorrectly? Was she simply trying to placate me, so I'd get off her ass about going?

"Good! I'm glad you went!" I said. "What did your doctor say?"

Hesitation.

"Well...he said...he said that sometimes he forgets things too."

"Oh...well, that's true...everyone does forget things from time to time," I said.

Long silence.

"Did you get a referral to the University?" I asked.

"Well," she said, with another long pause, "I decided that I'm going to go with my doctor's advice and not worry about it right now."

She was pleased that she made her decision.

"Oh," I said.

Another long pause.

"Well, I'm glad for you that you made a decision about your health care. However, I do not agree with it, either personally or professionally," I said.

"I've always prided myself on my health," she said. "And this is no exception. I'm ok with where I'm at."

"I see," I said.

Another long pause.

And then I asked, "How old is your doctor, Mom?"

"Oh! Well, I don't know...he's...well he's...."

"Is he older or younger than you?"

"He's much younger."

"I see. And what's his name?"

"Uh...his name is Dr. Murray. Yes, Dr. Murray. He's a nice Jewish doctor."

"Gotcha," I said.

And in my head I screamed "What the fuck does his religion or culture have to do with the type of health care he provides!?!?!? Oh...wait...right...never mind.... It's better to listen to the Jewish doctor who you maybe see once a year and you've chatted with for 7 minutes than it is to listen to your family members, particularly your daughter who has a fucking MASTERS degree in HEALTH EDUCATION and is a college professor and TEACHES a unit on aging!!!!!! Right. No vested interest on my end. None at all. Jesus tap dancing mother fucking Christ!!!!!!!!"

I changed the subject and asked her to have dad please call me when he gets home from swimming.

She said that Sam was down from Phoenix for the day, but was taking a nap. She said they were all going to go to eat later.

I told her to have fun, and Happy Mother's Day, I love you and all that jazz....

I got off the phone with her and immediately texted my brother, venting to him about the conversation I just had with her.

He replied that he'd talk to dad.

Later I kicked myself for not asking if my dad had gone with her to the doctor. Because when a person who is experiencing memory loss is at the doctor, it's really important that someone that knows them well is with them, so that the doctor can get a better understanding of what type of issues the patient is experiencing.

My dad still hasn't called. Maybe he hasn't had time alone. Maybe she forgot I called. Maybe she forgot to tell him. Maybe she made a choice to not tell him.

So, I'm making a choice too, and my choice is that I've said what I've needed to say. I'll send the paperwork about the U of A's center for aging. I'll mail them some pictures from when I was there. Maybe it'll help her. Maybe she'll remember I was there. Maybe she'll change her mind about seeking help.

In addition, my choice is that I'm focusing on my immediate family: my husband and my sons. They need me in a very different way than my mother does. My mother is a grown up and has my dad and my brother for support. They can make decisions. I'll consult with them if they ask me, but I am not responsible for my mother, or the choices she may, or may not, make.

Her birthday

Stacie and I talked about it on Wednesday night, and we decided that it was best for me to have breakfast with my mom, alone, on Thursday for her birthday. Given that she's starting to loose her memory, she may be more candid if it were just she and I, as opposed to feeling the need to be guarded if Stace was with us.

So, I picked my mom up at my parent's home about 9:30 on her 67th birthday and took her, in that awesome convertible camaro, to breakfast. It was a gorgeous spring day and we drove with the top down.

The restaurant she picked was closed, and wouldn't open until 11 am, so I took out my phone, opened Yelp, and did a search for breakfast. The first restaurant that popped up was The Good Egg, and it was about two miles away from where we were. We hopped back into the camaro, and I asked Siri how to get there. And Siri started talking, like she does, and I thought my mom's head was gonna explode, because she is simply not tech savvy (bless her heart). For her, emailing is a stretch; FaceTiming is outta the question (partly because of the tech challenges; partly because she doesn't like the way she looks on the camera. And, no, I'm not kidding).

We had a pleasant conversation over breakfast, I filled her in on what the boys are up to, Nathan's health stuff, how Randy's voice is doing, and a little about what it was like to go through chemo. I censored the nitty gritty of it because I know she's the type to bury her head in the sand and doesn't want to hear about the nastiness of chemo. Not that anyone really does...but you'd think your own mother would want to know what you went through.......

I turned the conversation to her and asked her how she's enjoying her retirement. At some point in the conversation, she used a phrase like, "I don't remember" and I jumped on it, knowing this was my chance, and it would likely not come again.

"Does that happen a lot, Mom?"

She looked at me, surprised, and asked, "What? Does what happen a lot?"

"You not remembering?"

"Well, I don't really know. Haha. I guess. I'm not really sure."

I looked at her, and said, "Well I am concerned that it does. I am worried about you."

"It's nice that you're worried, but you have a lot on your plate with the boys and with Randy and your teaching. You don't need to worry about me."

"Mom, part of the reason I'm here is to take a break from my life and the hell I personally went through with cancer...and part of the reason I'm hear is because over the past 7 or 8 years, I've noticed that your memory is slipping."

She looked at me in the way she has my entire life, clearly uncomfortable with where I was going, and unsure of what I'd say next. And because I'm me, I get a little bit of a charge of taking people out of their comfort zone, and my mother is no exception.

"I know because of the phone conversations. I know because I can feel it. I can feel your memory slipping the same way I can feel it when Nathan's seizes. I know your brain is changing because I live with someone who has a few brain disorders, and while what Nathan deals with is different than what you deal with, it's still a brain disorder. And, we have a family history of Alzheimer's disease. Your father didn't know who his wife of nearly 50 years was when he died."

She swallowed a few gulps of water, cleared her throat and looked at me, expecting more.

I spoke slowly, so that she had time to absorb what I was saying.

"I know you don't want to deal with the idea of loosing your memory. Believe me when I tell you I certainly didn't want to deal with the lump I found in my breast. But the fact is, if I didn't, I'd be dead. I know confronting a health issue is scary, and I can help you. I can help you navigate the health care system, I have a lot of experience, both professionally as a Health Educator for nearly 20 years, as well as a patient and as a care giver. I've already looked into it, and the U of A has a facility called the Arizona Center on Aging. They have neurologists who specialize in memory issues and can help you. Are you taking any medications?"

"No. I don't take anything," she said.

"That's great! And that's pretty amazing that you're 67 years old and you're not on any medications! Good for you, Mom!"

She smiled and took pride in my compliment. Then, just as quickly, her smile disappeared. She cleared her throat.

"Dad and I have talked a little bit about my memory issues, and I suppose I should get to the...where would I go first?" she said.

"I'd start with your primary care doctor. It's important that he or she have a set of eyes on you."

"Did you see your primary care doc when you were going through chemo?"

"Yes, I saw him a couple of times. And I think it's important that when a person is dealing with a major health issue, that they have several different care providers. Each physician is going to have a different perspective, and each of those perspectives are going to be valuable in their own way."

I was getting excited. She was opening up. I could sense her willingness to get help. This was going much better than I had anticipated.

"I think you start with your primary physician, and ask for a referral to the University's Center for Aging. Depending on your insurance, you may be able to self refer and go straight to the U of A."

"Our insurance allows us to self-refer. I can do that," she said.

"Mom that's great! I'm really proud of you for being willing to pursue this. So, what I can do to help you is look some stuff up on the web about the services the University offers, print some information off for you, and mail it to you."

"That would be helpful. Getting on the computer is pretty overwhelming for me."

"I understand. So, I'll get it in the mail as quickly as I can once I get home."

"Did you talk to Dad about this? Does Sam know that you're talking to me, too?"

"Yes, Mom. We are all worried about you and the memory loss we are witnessing. It is important to all of us that you get the help you need and deserve."

"What about Dad?"

"Dad is acutely aware of your fading memory. He's really very worried. He's told me that he makes accommodations for you by leaving you notes. He said that you call him every morning at work about 8 am so that he knows you're ok. He loves you very much, and he wants what's best for you."

By this point, we'd finished eating. I was thankful that she was as open as she was to getting the help she needed. I paid the bill and we left the restaurant.

My spirits were lifted by the ease and gracefulness of the conversation. I was pleasantly surprised.

The sun was out, the sky was blue, the top was down, and we headed towards the resort to connect with Stacie. It was a beautiful day.            

Left and Right

Left?

Soft. 

Supple. 

Pliable...?

Squishy! But in a good way. 

Right?

Hot and hard. But not in a good way.

Radiation.

Dead and empty. 

Pained. 

Lifeless.....

Left!

Sexy. 

Confident. 

Easier time latching! 

Mmm! Babies! 

Loving! 

Cuddles.

Snuggles. 

Right? 

Really hard time latching. 

Never quite got it just right. 

My nipple was...is...a little outta whack...flat...not quite right but its a part of my body and its all good but it's...not.....really.........

Because it had cancer. And I hate it a little bit. 

Sometimes a lot. 

Sometimes I really fucking hate it a lot and I want to just chop it the fuck off.

Fuck you cancer.

Fuck you hard.

But not in a good way. 

I need a light saber. 

And a Jedi Knight. 

And DIY video on YouTube.

Which, of course, there are not any "how to do your own mastectomy with a light saber" videos.

I guess I'll make my own.....

Fucking cancer.

Problems with her memory

"Your mother's got problems with her memory, honey, " said my dad.

That's how the conversation started. We were sitting in a sandwich shop: me, mom, dad, and Stacie. Mom had gotten up to go to the bathroom. We'd been with them for nearly three hours at that point. It was Tuesday, the day we arrived in Tucson.

"I know. That's part of the reason why I'm here," I replied. "I've been worried for a long time and this is the first time since the boys were born that I've been able to travel."

We'd already spent a couple of hours at their home; it was the first time I'd been to Tucson in 13 years. We all visited; Stacie answered the questions they asked about her family, her kids, their ages, their names. Mom and I went for a walk with their enormous Golden Retriever, Sadie. Stacie visited with dad for a bit.

Then we went to dinner at a sandwich shop. Towards the end of our meal, mom asked Stacie about her family, her kids, their ages, their names.

Then she asked the same questions again, about 10 minutes later.

Stacie, who is incredibly gracious, and has personal experience with dealing with a parent who has dementia, answered my mother's questions again. I'm thankful Stacie was with me; she's incredibly supportive and patient. It's kinda in the job description of being my friend.

Then my mom got up to go to the bathroom, and that's when my dad said what he did about her memory.

"I'm more concerned that she's able to be by herself at the house. Do you think she's safe?" I asked my dad.

"I do. We have a routine. I get up about 4:00 to be at work about 5:30, and when she gets up, generally about 8, she calls me on my cell," he said.

I nodded.

He continued: "I write notes for her, so she can remember things. I need to write down what your plans are while you're here so that she remembers."

"That's great that you guys have a routine. Do you need to know what we're doing each day? Or...?" my voice faded.

He said, "Well, I know you're not going to see her tomorrow, and that's fine. But what are you doing on Thursday? It's her birthday."

"I was planning on picking her up at your house sometime in the morning and going from there. Since it'll be her birthday, I think she should decide what we're going to do," I said.

He agreed and then said, "She's coming back...."

It felt a little deceptive...but it was coming from a loving place.

We decided that Stacie and I would pick her up at the house about 9 am on Thursday morning.

Free Upgrades

We landed in Tucson and walked over to the car rental place. I chose Enterprise, because they had the best deal on a small-ish SUV, and because I'm a Costco member, they waved the fee for a second driver. Score!

I requested an SUV because both Stacie and I drive them at home. It's what we're both used to, and I needed both of us to be as comfortable as possible; get a vehicle you're familiar with and reduce your stress. Right?

But Enterprise didn't have any small-ish SUV's. They only had XXL. Think Suburban. Way too much for these Northwest Women traveling without their families and with only one suitcase each.

Well, they had some boxy type of car that said, "push me down and take my lunch money" so we chose to not take that. There was an older couple who ended up taking it anyway. I'm glad it found a home.

We had a little time to kill while we were waiting on them to find a vehicle that would work for us, so we made small talk. The young lady who works for Enterprise and was helping us had recently graduated from the University of Arizona.

"Well, they're just finishing up detailing a car that may work for you," she said.

And up pulls a silver convertible Camaro.

"We can give this to you as a free upgrade because we don't have the vehicle you requested," she said.

She didn't have to tell us twice. We took it.

"Do you want protection?" she asked innocently.

I said, "What? Like a condom?"

We all laughed--because I'm funny!

And she said she'd never had anyone ask her that before.

Stacie, always thinking ahead, asked them to please show us how to take the top down and put it back up again. 

Then we went to lunch downtown, at Cafe' Poca Cosa, which was close to where Stacie used to work when she was with the Pima County Health Department.  It was good. But the waiter had a hard time engaging with me; short hair in Tucson = automatic lesbian. Seriously. This is the mentality of the city I grew up in.

Then we drove out to Ventana Canyon, where I had booked a room. And we got a free upgrade, so we took it. Again, didn't have to be asked twice.

Our room was in the very back of the property, it was easier to drive back than it was to walk from the front desk.

Then I lost the car key. Not a good omen. I emptied all of my luggage, and I couldn't find it. I panicked, like you do when you loose a key to a $40,000 car you just rented, you're on the first vacation you've taken in so long you can't remember, you're tired from traveling, and you're head's about to explode because you're about to see your parents for the first time in nearly 10 years, and you've had more happen in your life than you ever imagined.

So I called the concierge's desk, and Timothy was so helpful; he got security right on it. Then I found the key and called him back and left him a message that I found my key. Then we left to go out to my folks' house. But we drove through the front of the property, so that I could tell Timothy that I found my car key, and to thank him for being so responsive.

He was happy for me and said it was my lucky day. I asked him if he happened to know the winning numbers for the lottery, and he said they were 8, 6, 7, 5, 3, OH, 9...because he was quick and funny.

Then we drove, top down, to Mom and Dad's house.

A Beautiful Day in Seattle

We went over last April 16th, just me and Jen.

It was a beautiful spring day. 

At that point, we'd been friends for 8 years. Since Nathan was 6 months old and Max was 3 months old.

I remember the day we met, at New Family Services' drop in clinic. Susan and Austin were there too. And Nurse Kelly.

I don't remember parenting without her.

Every birthday party.

That book club we started that kinda...fizzled out.....

The Life of Pi.....that about 30 moms, and many children, came too...and only like four of us read the book--and I pissed people off by sending an email that basically said if you're going to be in a book club you need to read the book. I didn't curse. I don't know why people got so upset. Oh well.....Not the first time I've upset people; won't be the last.

An additional pregnancy for each of us--both boys, Carter and Isaac, two weeks apart.

More boys! More birthday parties!

Oh...my...the Legos.....

Another book club; new and improved!


We all became Extremely Loud and Incredibly Close

And then we became Moms Who Drink and Swear....

Well, some of us. Me, mostly. Shocking I know. Because I have a mouth like a fuckin' trucker.


Learning to survive and navigate this crazy life with boys together. Being the only females in our respective homes. And thinking that perhaps Swimming to Antarctica would be an easier task. And that would be leaving from the North Olympic Peninsula...and swimming down the coast. Or maybe up and over the top of the world. Either way, it's a haul.

Jen's been with me and my family through diagnosis...

after diagnosis....

after diagnosis....

At my biopsy. She was a shining light. Beautiful. Blonde. Glasses. She gave me a kindness coin. Pink. Plastic. To hold during what was hands down the scariest part of My Cancer Adventure. Gratitude.

Bonnie was there, too...as she is at most major medical milestones in my life...Isaac's birth.....Gratitude.

But Jen, after we found out that I needed to get to Seattle and get tested for the Breast Cancer Genes because my breast cancer was the biggest baddest nastiest type of breast cancer a girl can get....

Jen was there. And we went and it was glorious. And sunny. And we walked onto the ferry. We bumped into Teacher Bob, who was Carter and Isaac's preschool teacher. And, in these parts, Teacher Bob is legendary. We took it as a good omen.

Spring in the Pacific Northwest. Day trip to Seattle. Alone. No boys. Such a treat! Green everywhere! I know why they call Seattle "The Emerald City."

She used to live in Seattle, when she was in undergrad at U-Dub. And then she went on to earn her Master's Degree. She's a smart cookie, that Mrs. J.....Oh so clever! She gets to work with kids all day long. And write reports; which is kinda like grading for me...not the best part of the job...but it has to be done.

We got off the ferry and we walked to the bus stop. I had no idea where we were going, but JJ did, because she's awesome. No GPS. No maps. She just knew where we were going.

So I just let her lead me around. Or maybe push me. It was a scary day and I was, and am, so thankful that she had her shit together enough to know where we were going and what we needed to do. My brain was fried from the sleepless night.

We took the bus to Swedish Hospital, where I was scheduled to meet with the genetic counselor and possibly get a blood test. We stopped in, because we wanted to know where we were going; we're both planners. And the security guard was fantastic! He sees lots of scared people walk through the Cancer Center doors. He was as cool as a cucumber, and even posed for a picture with me--CLICK! JJ on the spot! She's a badass photographer, too.

Jen's so amazing that she took the time to research a peaceful place for us to spend a bit of time. We ended up walking around enjoying the beauty of Seattle University. The magnolia trees were in full bloom. It was amazing!

Unbeknownst to me, Seattle U is a Jesuit Catholic University. I'm just thankful the ground didn't start shaking when I stepped foot on campus..... Seriously.

Then we had lunch at some little restaurant, near a hotel. I don't recall the name. And I don't recall what we ate. But the company was fantastic....

We walked over to Swedish Hospital, made it to the appointment with plenty of time to spare. The genetic counselor was supportive of me getting tested for the BRCA1 and BRCA2 genes. She thought I'd come back positive.

I remember telling the genetic counselor that if I did test positive for either Breast Cancer gene, I was willing to undergo a double mastectomy--with reconstruction (duh!) and an oophorectomy (fancy way of saying "removal of ovaries"--and you bet your ass I know how to say it correctly!)  Because that's the current treatment for a woman who tests positive for BRCA1 or BRCA2.

I told her that I'd rather my kids grow up with a mother who tried everything she could to save her own life so that she could be there for them. Not that I was willing to go through this for them; I was willing to go through it for me.

Not because of being afraid to miss something they did; but because I didn't want kids like mine growing up without their mother. Not that they're bad or they're "bad" or whatever. But because of abilities and disabilities. Because in a small community like ours, with so few supports for kids and families with special needs....

I'd rather loose both my breasts and both my ovaries than to die. Bottom line. Because when you're facing cancer, you do whatever you can to ensure you don't end up a statistic. Another life lost. Too young. Only 42.

The genetic counselor decided to test my blood. I was scared. Horrified. Jen held my hand through the entire day. She lifted me up. 

 

When would I get the results? In a week or so. Would they be positive? Would I have more surgeries? Who would do those? Surgery would be in Seattle, because in Port Angeles, we just don't have a surgeon who can do a double mastectomy and reconstruction.  

But there' probably a YouTube video out there on how to do your own oophorectomy. Get me a melon-baler! I'll do it myself! Kidding...even I set limits.

When we were done, we went over to the Seattle Public Library's central building, which is an architectural marvel! They have an awesome gift shop. We each purchased a pair of earrings--Jen's were two Scrabble tiles, J and J...her initials, which collectively are worth 16 points. But she's far more valuable than 16 points. I got a pair of yellow socks, which look like the old school library cards. We each got a magnet--Where the Wild Things Are. 

Then we walked over to the Seattle Great Wheel and rode it. Something new for both of us to do. She'd lived in the city for 6 years and had never ridden it. I get it; it's like living in Vegas and never riding the roller coaster on the Stratosphere tower. 

The views from the Great Wheel were amazing. We could see all the way across Puget Sound to the Olympic Mountains.

We walked back to the ferry and then drove over an hour to get home. Getting to Seattle and back in a day is a long haul. The day was so emotional. Fun. Scary. Beautiful. Horrifying. Thankful that Jen was there for me and my family. 

And the results came back early. The genetic counselor called me. She was excited because I was negative for both BRCA1 and BRCA2. 

Thankful I didn't have to go through however many more surgeries. 

Thankful I got to go through radiation, which was a walk in the park compared to more surgeries. Because that's the deal: a positive BRCA1 or BRCA2 test meant surgeries and no radiation; a negative test meant no surgeries and go through radiation. 

And even though my right breast tried to fucking kill me, I'm glad I got to keep it. 

And I'm even more thankful that my friend Jen is my friend. I love her beyond measure.

I don't want to

I don't want to put your shin guards on you.

Or your socks.

I know it's hard. But seriously? You're almost 10.

Yes, I'll help you get your gear on.

Although you don't know it, I'm sorry your fingers don't work as well as your younger brother's.

I'm glad you can put your cleats on.

Yes, I'll tie your laces.

I hope the Nike self-lacing shoes aren't horribly expensive. But it's Nike. So it'll be a fucking fortune. You'd think--you'd THINK--they'd give us a break.

Yes, it's hot. A whopping 70* and you're complaining.

In my day, we walked up hill, both ways, to camp, in the searing 110* Tucson heat. Don't complain to me about being hot.

Yes, you can have a second frozen yogurt tube in the car on the way home. I know you worked hard at soccer.

Thank you for untying your cleats.

I don't want to take your socks off of you. You do it.

I don't want to take your shin guards off of you. You do it.

I know it's hard. But seriously? You're almost 10.

Daddy to the rescue. Thank you, Randy. 

I don't want to deal with autism. Or developmental delays.

And I know nobody else doesn't want to either.