Not Into It

Halloween is here, and I'm not into it this year.

I'm not into decorating.

I'm not into carving pumpkins.

I purchased two pumpkins, but I'm not into carving them. The boys can do it if they want to. They don't want to. I'm not into it. I suppose they'll end up being thrown into a part of the woods on our property. Perhaps in a few seasons, we'll have a Great Pumpkin patch.

I'm not into getting their costumes ready. Even though I purchased stuff for their costumes, I'm not really into it. Nathan's going as a cat. Again. And Isaac hasn't completely decided but is leaning towards a vampire. We'll see.

I feel like I should be happy. That I should be thankful. That I should be decorating to make the boys happy and help them feel like "normal" kids. Even though the only "normal" in our house is a setting on the washing machine.

It's been a full month since I had my chemo port removed. Ample time to recover from that minor surgery. But the emotion. The angst. The frustration. The worry. The fear. The guilt. The sadness. I'm still processing all of that. And the incision, while mostly healed, is still pretty tender.

And last week sucked. Perhaps the worst week I've personally had in a long, long time.

It started out great: I did some grading from home on Monday morning, like I usually do after my husband and the boys are out the door for school and work. I then went to a noon power yoga class at Poser Yoga Studio. (Thanks Jenny for the great class!)

On Tuesday I was able to help out last minute by volunteering at the book fair at the boys' school. I'm thankful that I had the opportunity to help kids and be around books. Because: BOOKS! Right?! Oh, and that warm feeling you get in your heart from volunteering and helping others.

Wednesday is my regular volunteer day at school, I usually go in and collate the folders that get sent home to parents. It's a great thing for me to do because I don't have to think about the myriad and intense health issues my family has been dealing for the past five years. But this past Wednesday, I unexpectedly started my period. While at school. But it was one of those, it is? Is it not? Seriously? You've got to be fucking kidding me type of things that all women experience, at least every once in a while. Well, I suppose that explains my emotional state the past couple of weeks. Fuck. And I had no tampons. Because I didn't expect it.

The reason I didn't expect my period is because when I went through chemotherapy for breast cancer in 2015, the chemo caused me to go into what's called "medical menopause." This happens in most young women (I was 42 at the time--still "young" in cancer land). Chemotherapy is successful in killing cancer cells because cancer cells are considered "rapidly-dividing cells." We all have cells that are considered "rapidly-dividing" our skin cells, our hair, our finger and toe nails....

And that's why our hair falls out when we're going through chemo...because to chemotherapy, fast-growing cells are fast-growing cells: the chemotherapy doesn't discriminate and can't tell the difference between a cancer cell and a hair cell. 

So, medical menopause hits me, which is a total fucking bonus because god knows when you're going through chemo you really REALLY don't want to be dealing with your goddamn period. You know what I'm sayin? Seriously. Praise be for medical menopause, you guys.

Anyway, so it turns out my ovaries didn't completely shut the fuck down because apparently I'm one fertile bitch. Seriously? Because in what goddamn universe is it a good idea for me to have another baby? Not the one I'm living in. Fuck that. Kids suck the life out of their mothers. 

The first time I got my period after chemo was a total surprise. Like, I had no idea, it wasn't even on my radar because I'm in Tucson on vacation with Stacie, staying at Ventana Canyon, sleeping on the 12,000,000 thread count white cotton sheets. I'm just thankful that when I sat up, shit didn't go down like the elevator scene in The Shining. You with me? 

Since then, I've gotten my period about every six months. But really, I don't pay attention. Can't that shit stop already? I kinda like not having a period and no hot flashes and sex with my husband whenever I need/want to. Goddamnit. There goes my body betraying me again.

On Thursday, after what I'll politely call the Before School Psycho Menstruating Mommy Meltdown, I had a heated text exchange with my incredibly patient husband, in which I informed him of all the errands I needed to run that day. Then in an attempt to reset and be kind to myself, I took a long hot shower. And in it, the last gigantic glue-scabs from my chemo port removal last month came off. Thank the sweet Baby Jesus for that. But goddamnit it was nasty. Seriously. It was as big as my pinky nail and made me gag a little. It looked like the biggest booger you've ever seen. So gross. 

On Friday I made the 75-minute drive to Silverdale because I needed to get off the Peninsula. I had lunch with an old friend who has been a nurse for decades and doesn't sugar-coat shit. When she sat down across from me at the table, she said something about how I looked like hell. Because I did. No sleep for 3-4 consecutive nights. Thanks period.

Saturday was soccer, and it's always a treat to see Isaac play. But it's super stressful, too, because watching Nathan while in a large open space, with lots of people and a few dogs can be tricky. Fortunately, one of Isaac's teammates...his mom, who is lovely, brings their large and very sweet dog, so Nathan was covered, and I felt like I could breathe a little. Thank you, Katie.

On Saturday afternoon, I said no to a spontaneous dinner with a good friend who's birthday was yesterday. I was too tired. I listened to my own needs. I went to bed early. I know she understands, but I still have guilt about not going. The fear of missing out.

Sunday was a stay home family day. This is part of our routine. We play Wii. We have dinner as a family. And we talked about the fact that there are no Halloween decorations at our house this year. And I know the boys are disappointed. And I know it doesn't feel like Halloween. And I'm sorry. But I'm tired of being the only one who decorates. I mean, the boys help, but there's a lot of pushing rope, you know what I'm saying?

And this week, the schedule with school is crazy. All day Monday, complete with a field trip for Nathan. No school Tuesday. Because Halloween is like a holiday up here. But when I was in school, we'd get time off for the Tucson Rodeo, so it's all good. But still. Then Wednesday and Thursday we have 1/2 days...and all three days, there are parent-teacher conferences...which I'm also not into. I mean, we had Nathan's IEP meeting a couple of weeks ago. It was a short one, as far as IEP meetings go. Any time you walk out of an IEP meeting that's less than two hours, it's good. Right? On Wednesday, we'll meet with Isaac's teacher, and it's only 20 minutes, and I know he's doing well academically.... But still. Not into it. Friday is a full day. But in an autism home, the change of schedule and the holiday tend to throw us all off.

And this week, these memories have been popping up in my Facebook feed. It's been five years since we took our older son over to Seattle Children's Hospital and checked our then 6-year-old into the Inpatient Psychiatric Unit for 11 days because he had become incredibly violent. Looking back, I know it wasn't his fault that he was so aggressive; it was the anti-seizure drug he was on. Depakote. That shit is the devil. I'm thankful that we've made the changes to his meds that we have. But, fuck me, keeping on top of his meds and the changes and trying new drugs, both the ones that are mass produced in a lab and the ones that are grown in the ground, is a lot of work. I used to chart everything...but I let it go a long time ago.

So today, I'll get my shenanigans together and I'll help the boys with their costumes and I'll throw something on and I'll pick Randy up at the college and then we'll go downtown to trick-or-treat. Because that's what we do.

Whether we're into it or not.

For our kids.

My Chemo Port

From the inside, sometimes I still feel it.

I can always feel it if I rub my hand over it.

My chemo port

I feel it every single time I do my lymphatic massage, which I do twice each day. 

Sometimes I can see it when I look down and to the left, my eyes sweeping over it, and I have a rush of varying emotions run over me.

Oh, THAT goddamned thing.

It's a constant reminder.

I can see it when I look in the mirror.

It's kinda cool.

I hate it.

It's on my left side, about three finger-widths below my clavicle. My collarbone. I didn't do so well in Anatomy and Physiology because that was the first summer Randy and I were dating. Mmm-hmmm...A&P.....

Anyway!

But, clavicle, I got that!

So I've got this piece of plasticy-rubbery-hard-bumpy thing under my skin. It's horrible and wondrous. It's invasive and life-saving. 

It's a brilliant pain in ass.

In Cancer Land, it's called a "chemo port" or a "port-a-cath." My particular model is the Bard Power Port. It even comes with a snazzy rubber bracelet that I wore, (it broke; not made for long-term usage, apparently) just in case of emergency, so that the first responders know they can tap my chest to administer IV fluids or draw blood, instead of trying to find a vein in the heat of the moment type of thing. I also have a small plastic card for my key chain. And another plastic card, the size of a credit card, that stays in my wallet. I added my name in permanent marker. Because if some shit goes down, it's pretty fuckin important that health care professionals know there's some foreign shit embedded in my body and it's supposed to be there.

My port sits under my bra strap, which totally sucks. Because sometimes it hurts from my bra strap rubbing on it.

As great as my surgeon was in her removal of the lime-sized lump in my right breast....

I'd rather have the port placed a little to the left. Or right. Just not under my bra strap. It hurts. Pretty much every time I move, including circle sweeping my arms over my head, which is tolerable because there's no impact. Hitting the bag? Yeah. Hasn't happened since before surgery. Well, maybe once or twice. But strapping down the girls with two sports bras would put a lot of pressure on the port. So kickboxking has been outta my routine for too long. There's a lot of rage in me that needs to come out in a healthy way. Exercise is one way. So is hugging. Hugging my kids. We're all as gentle as we can be with it. I've taken my fair share of accidental head shots directly to my port, and it hurts. When I'm physically hurting, my family can tell you that I'm not pleasant to be around. I turn into the Mommy Monster...not that I'm proud of this. But it's my reality. 

When I saw my surgeon back in March, for my 2-year post-op check-up, she apologized to me, again, for it's placement. The lumpectomy and the port placement occurred on the same day. Yes, it's been over two years since my lumpectomy. March 20, 2015. So it's actually just over 2-1/2 years. I'm not counting or anything...

It's been in so long because my Medical Oncologist said, basically, since a triple-negative tumor is not something to fuck around with in a young woman, and since the research shows that the recurrence of my type of cancer is pretty high, she wanted to leave it in for 2 years after all of my treatment was complete. I finished chemo in September 2015. I finished radiation in November the same year. So, I'm at the two year mark. Right?

Anyway, it's not like my surgeon had a choice. I know she didn't say, "I'm going to put this right here just to be a pain in the ass!" It's just the way my body works. It's my Anatomy & Physiology...A&P...if you will.

It's nasty and I try not to rub it. Because, really, you don't want to rub my port. It's not hot.

And when I sleep on my stomach, I can kinda feel it...the pressure from the mattress. Not ok.

Kinda like this...

Our bodies also change shape throughout the day, depending on how much water, salt, or food, we consume...if we choose healthy or unhealthy foods...how much we exercise...or sit on our asses. And sometimes, when it feels like it's going to jump out of my skin like an alien, all I can do for myself is drink water, because I know water helps my body on a cellular level.

Sometimes, when I interact with people who are not particularly kind, I kinda feel like it's going to jump out of my chest and land on their face. You know, like Aliens do.

For the past 2-1/2 years, every 6 weeks, I have to get it flushed. This means I go to the Cancer Center, check in, get my hospital bracelet on, go back to and check in with the chemo nurses. I sit down in a small room, she scans my bracelet and asks me my name and birth date. We gotta make sure I'm me. Then she sets up a sterile field: gets the syringes full of heparin and saline and she gloves up and she places her face mask and gets the needle with the long tubing and she sticks the needle in my chest into my port which has a catheter on it that goes directly into my heart valve and that's where the chemo went in and the blood will come out.

Breathe. Because the technology and science that is used to help cancer patients is pretty fuckin cool. And I'm thankful to the researchers and the patients and families went before me and mine.

And then the nurse does whatever she does, but I'm not looking, you with me? Because there's a goddamned needle in.my.chest. (but not like Uma Thurman) and I'm done with that shit. Look away! To the right where you won't see! Breathe. In. Out. She talks. I listen. We chat. Relax. Just. This. Channel The Bride. Because, really, after all I've been through as a cancer patient, getting labs is not that bad, physically. But, the process of getting to the Cancer Center and having labs done is a mind fuck for me. So I do my best to draw strength from various channels.

The week I have labs, I feel it all the fucking time. All. The. Fucking. Time. Coming out from the depths of my soul, out of my skin. Alien.

It's way worse than that huge fucking zit in the center of your face when you were in high school that you were convinced the boy you had a crush on since middle school was going to see it and then projectile vomited on your shoes when he saw it. It's like that. But worse because you have no control over when, exactly, you'll be popping this zit. 

And those weeks, I hate my chemo port. Loathe.

They're looking for an increase in my white blood cell count. They're making sure my vitals are ok--that I'm not anemic, they get a complete blood cell count, and they may do a tumor marker test. They don't do a pregnancy test. I asked. Chemo threw me into menopause...kinda a bonus...because Jesus knows a girl doesn't need to deal with her goddamned period when she's going through chemo. The nurses said I will probably not have another period. Again, kinda a bonus.....I'm not complaining. A person's sexuality is compromised when they travel into Cancer Land.

When they poke me in the chest with a needle, I'm kind to myself on those days. It's stressful. Before I leave my house, I put a thick dollop of lidocaine cream on my port, then cover with plastic wrap. For reals. And by the time I get poked, my skin is numb. It makes the needle stick less painful physically. But the mental fuckery is the same. And when they take the needle out and I get back out to my car, I always treat myself a nice piece of chocolate. Seattle's Best. Or Ghirardelli. I've reached a point in life that Hershey's ain't gonna cut it.

Sometimes when they flush my port, I get a weird taste in my mouth. It's common. Or I feel a little salt water in my nose. It doesn't drip out, it's more like when you get a bit of water when your swimming...that slight burning sensation...it's gross. I know. Believe me. I. Know. 

One time, when we were homeschooling him, I had to take Nathan with me to get my port flushed. He did great. Given everything he's been through...the countless times he's had his blood drawn for the docs to know his med levels...the multiple EEG's...the MRI.... He's actually incredibly comfortable in medical facilities. He stayed close, but was not shy about hitting the snack cart they have in the infusion area. Yes, you may have a bag of Ritz Bits. And a granola bar. And a hot chocolate which was too hot to drink. Yes, absolutely you may get another pack of Ritz Bits for your brother. You're a thoughtful person, child. The nurses were very welcoming and kind to him, which, of course, put both of us at ease. He didn't watch the nurse stick the needle in my port.

So it's out. I saw my surgeon on Wednesday September 27th. At the hospital. In the OR. Not in her office. Because I need to be kind to myself and I don't want to feel the tugging and the pulling and the slicing. Put me to sleep. Thank you. And thank you for waking me up.

Thanks Stace for getting up at o'dark o'clock and being at my house at 5:30 AM so I could check in at 6:00 AM at OMC. You are my rock. I love you.

Thanks boys for getting up at 4 am on your own because of your own anxieties. I get it. I didn't sleep either. Maybe about 4 hours. I love you both.

We told them the night before. And, in their short lives, (they are 11 and 8-1/2) with all that they deal with and have dealt with, particularly in the last two years...this isn't just getting a chemo port out. There is no "it's a routine thing" in my home. Not after my chemo and my radiation and their Dad's diagnosis and hospitalization in Seattle and let's not forget Daddy's seizure and his radiation and his chemo and all the autism and Nathan's countless seizures. And Isaac's broken arm. All of that is, nay WAS, in that chemo port. 

Isaac said to me, "Mom, maybe when your chemo port comes out you won't be so cranky." I love you too, I. You should be thankful I didn't thump you on the forehead. Troll.  

Thanks, Stef, for the hug and holding my hand in the pre-op area of the OR. I'm so thankful that you were my nurse when this goddamned port was inserted in March 2015, and that I got to see you just before it was removed in September 2017. I know you get it.  

It is out of me. I am thankful I no longer have a piece of plastic, embedded under my skin, with a tube attached to it that runs directly to my heart valve. I am thankful for the science. 

Please, Universe, never again.

I have stitches. And glue. And I'm gave myself an opportunity to rest as much as possible for the remainder of the week after my minor surgery. It was a quick in-and-out. A routine thing. I know. It's a little exciting for my family to have "a routine thing" so we all just rolled with it. 

And were doing our best to take care of each other and ourselves. 

Thank you Randy Anderson for having an amazing job, with stellar benefits, and for working so hard and smart and being so incredibly dedicated to me and our family and our life together. 

I love you.

The past nearly 4 weeks has been good. Basically, the reason it came out in September instead of November was that the test results of my bi-lateral MRI with contrast I had in August came back and my boobs are stellar. There is no evidence of disease. We have a new medical oncologist at the Cancer Center, and he was basically like, "look, you can get it out now, or you can wait till November. I completely respect whatever decision you make." We agreed that I'd think about it. And I meditated. And slept. And had long conversations with my husband. And I went back to the fact that when my medical oncologist said, "Tell me how you feel about your chemo port," my response was "it's horribly inconvenient" which I then translated to "it's time for it to come out."

Last night, I was fortunate enough to be invited by my friend Carrie to the OMC Cancer Center annual fundraising dinner, where a woman paid $4,100 for a painting and a case of wine from a local winery. (thank you, lady, for your contribution to saving lives. seriously.) I had the opportunity to listen to the powers that be at my local hospital talk about the new facility that's being built to serve more cancer patients here on the Peninsula, supporting rural health care because 1 in 3 of us will be diagnosed with a cancer in our lifetimes. 

Me, Carrie, and Holly

I also got to see my friend Holly, who's a breath of fresh fuckin' air. Thanks to both Holly and Lindsey who told me that my writing is important and valuable and that you appreciate what I do.

And, I took the time to personally thank the commercial loan officer of Key Bank (where Carrie and Holly work) for providing the $20 million loan to OMC for the cancer center. Thanks Stan. I appreciate the huge commitment from you and your employer.

And, since I happen to have experience as both a cancer patient and a cancer caregiver, yes, I'm more than happy to serve on any advisory boards for said facility. Because my family is now one of those families that has experience and knowledge that can be shared to help others in my community.

The incision that my surgeon made is healing. She used stitches that will dissolve. And a lot of glue, which is nearly gone. My pain isn't bad...more like a discomfort when I move suddenly or repeat movements with my left arm. Because my bra strap rubs on the dried glue/scabs and it's nasty.

And while this chapter of my life is, please Universe, coming to a close, I still have anxiety about cancer. Because, basically, as a survivor, every time there's a new ache or pain, it's automatically a cancer. Stub your toe? Cancer of the toe. No shit. And from talking with other people who have been through it and survived, it's common. My son complained to me about a headache the other day, and I immediately jumped to "inoperable brain tumor" because that's the kind of mind fuck cancer creates. Turns out he needed to eat and drink some more water. If only all of life's ills were taken care of so easily as to eat strong foods and drink more water.

When I was growing up, my Dad told me on more than one occasion that if you have good health, you have everything.

So, here's to your health. I hope it's your everything.

...but more like this.

*Written over the course of the past 2-1/2 years