Goodbye 2019

There are 13 calendar days left in 2019. This year was the most challenging yet of all my 34 years on this earth. Being diagnosed in 2018 was hard, but most of my treatment came in 2019.

I cannot begin to express the love and gratitude I have for the people in my life who've supported me. Anyone who donated to the Go-fund me; Thank you so much. Anyone who did other things like buying us diapers, feeding us, driving me around, visiting me, sending cards, calling, emailing, texting, helping with the kids, extending offers to help in any way shape or form, cheering me up through jokes, being there when I need to vent; I see you. Your efforts did not go unnoticed or unappreciated. You all helped me get through this, and I mean it when I say the love and gratitude I feel can't be measured.

Cancer wasn't the only thing I battled through this year. I also battled as a mother, especially in regards to the boys. More recently the battle is a heart breaking one, and I am still trying to navigate my way through helping my middle child with his challenges. I've watched all three kids grow,  evolve, and change over the last year. It was a year I wasn't sure I'd get, but I am so thankful I have. I hope to have many more. Only time will tell. Every birthday for Tyler, one of the kids, or myself, I now view as a gift.

I am still more anxious than hopeful most days. I still sometimes find myself focusing on the bad over the good. I still find myself worrying without any reason to. I am working on it and hoping I find a good balance in 2020. Watching 2019 fade away is bitter sweet. I've experience so much good with the bad. 

We are all dealing with our own struggles; I don't assume because cancer is the center of my universe that it's also the center of everyone else's. I had a friend who was diagnosed with MS this year. I had a friend who's cancer came back. I had a family member and a close friend who both battled with depression and mental illness this year. My husband's family experienced illness, both physical and mental in 2019. My cousin's house was threatened by wild fires. One friend's sister lost custody of one of her children. Another friend lost her grandmother, and her ex-husbands grandmother all within a few months of each other. I have a friend who over the last 2 years he has undergone 3 different surgeries for 3 different things, and during that time had his mother pass away. My mom is battling with her own health issues. I have friends and family who've had to put down family pets this year. 

All of it is real. All of it is heartbreaking. Even though it's difficult and it beats us down, everyone, myself included, still perseveres.

Goodbye 2019. You taught me a lot of things, but mostly how to carry on.

"Sometimes carrying on, just carrying on, is the superhuman achievement."-Albert Camus

Stitches

I was listening to the radio a few days ago, and the topic came up of how many times the DJs had gotten stitches.  They took listener calls for stories, and I listened to a variety of people describe the times in their lives that they'd been injured or had surgery that required a form of stitches.

It got me to thinking; how many times have I had stitches?

Seven.

I was eleven the first time I had stitches due to a surgery. The surgery was a result of an injury I sustained when I was six. I was at Konkel Park, a local park in Greenfield, WI near where I grew up. I was with my Grandma Betty (you read that right) watching her dentist's baseball team play. (Crazy the details you remember, right?)  I slipped on the metal bleacher I had been walking on, landing directly on my lady bits.  My mom picked me up from the park and took me to a nearby urgent care where a doctor decided I was too young to go through the trauma of freezing the area and getting stitches. Unfortunately, as I grew and the skin that had been damaged began to grow apart from the rest of the area, leaving me with an awkward flap of skin on my right side.  At eleven, it started to become as issue.  We all know adolescence is hard enough on kids, but this piece of skin was getting in the way of simple things like menstruation pads and tampons.  So, I had reconstructive surgery on the area and all was right with the world after that... or at least with my va-jay-jay.

The second time I received stitches I was 21.  My brother was over at my apartment with my boyfriend at the time.  I was doing dishes in the kitchen sink and a casserole dish slipped out of my hand while I was washing it.  While attempting to catch the dish, my hand dipped into the water with it and was still on the dish as it broke into a variety of jagged pieces.  Needless to say one of those pieces sliced open my middle finger on my left hand.  I held the wound closed with a kitchen towel, calmly walked into the living room to the men, and explained they should probably take me to urgent care.  At first they thought I was joking, but once I showed them the cut they loaded me into the car and I received seven stitches on my finger.

The third time was when Desmond was born. Without going into too many details, I can tell you that it was only seven stitches; the same amount as my middle finger two years prior. The fourth time was when Evelyn was born. That was one stitch, but one is enough.

The fifth time I had stitches was when they put my power port in.  That was only ten or so stitches.  The sixth was when I had my mastectomy which is too many stitches to count, and the seventh was when I had my hysterectomy.  The hysterectomy was through laparoscopy, so it was five tiny incisions with three or four stitches each.

The thing about stitches is, when it's a good thing like a baby being born they seem like no big deal. When they are a cut finger, or surgery because of cancer, they carry a different weight.

I am curious though, I'd love to hear from of my friends and get their stitches stories!!!

It's been a while

It has been a month since my last blog post. I've started 3 within that time, but never posted them.  Mostly I stopped myself from posting what I'd written because they were all either dark or scattered. That isn't what I want people to have to read, and I don't want to look back on it and relive it. I kept it to myself until the bad mood passed, and now it has subsided some.
A few things have happened in the last month; I did meet with that new psychologist. I don't know about her... I felt like she wasn't asking the right questions. Or maybe she wasn't listening. Or maybe I wasn't explaining things well enough.  I haven't gone back. Maybe I should. She requested a follow up appointment, but I have not taken her up on it. Perhaps I just need to find someone else I am more comfortable with.

I tried dry needling (similar to acupuncture) in pelvic floor PT two weeks ago. It helped, but the area is still a work in progress. I have another dry needling/PT appointment this Thursday. It's weird, but if it helps, I'm game. It helped last time, so I am hoping this next time is that last time I'll need to go. Here's some info on it: https://www.webmd.com/pain-management/video/video-dry-needling-therapy  It's was freaky, I won't lie. My legs and muscles twitched when she moved the needle around, and it was sore for a few days. The good part is, though, it really loosened those muscles afterward.  Of course, I ruined it by working out too hard last week.

I flew through my one year anniversary of being diagnosed in the blink of an eye. I kept myself busy those two days with doctor appointments and kids. I wrote a blog the day of; 11/1/19, but decided not to post it. I was feeling... a lot that day. Happy, sad, frustrated, scared. The blog was all over the place. I didn't have a focus, but I made it through Halloween and November 1st without too much trouble. That's what is important. The kids had a nice Halloween, I stay mentally distracted every chance I got, and then it was over.

Work is going well. There are days I feel frustrated, but I think that's normal. There is growth, both personal and professional, in frustration. I try very hard to make sure I balance my work stress against my need for wellness. I prioritize my health more so now than I ever have in my life, and sometimes that means paying attention to work vs wellness. I try not to sweat the small stuff at work, and focus on the bigger picture in my life. Most days I'm successful, but some days the work still gets to me. Again, I have been trying to use the frustration constructively instead of allowing it to bring me down. I've got a good support system in my co-workers on those off days, and I think that really helps.

I started a book club a few months ago (Eat, Drink, Read), and it's going really well. I have wanted to start one for a while now, but was always too nervous to put feelers out there in case no one else was interested. I decided to stop worrying about it, and as it turns out the group is quite big! Not to mention, our book choices have been awesome. It's something I look forward to every month now. It's so much fun.

On another note, I've been moody at home and the result is me feeling like Tyler has been more careless.  Am I taking what he's saying and doing too personally, or is he really being an ass? I find myself asking this question almost daily. It's hard to tell when you're in the middle of it. I am always worried he's tired of taking care of me. Not that he has to take care of me like he did, but in general, I wonder if he's just... tired. You know? Doesn't want to be nice, doesn't want to deal with me complaining about one thing or another, etc. We've really been at each other lately. Hopefully it passes. Marriage is weird. I don't need any advice here; I do talk to him about all of this and how I'm feeling. I try to keep an open dialog and he does, too. We do well not pointing fingers or screaming at each other. It helps that he's all logic. All problems, emotional or not, have a logical solution to him. This keeps me from losing my head and flying off the handle when he says something that makes me want to hit him. Again, I think most of the issue is me and how extra sensitive I have been. He hasn't changed, He's still good ole Tyler who says whatever pops into his mind at the time... I just allow the carelessness to upset me more than it used to.

I also have been worried about posting blogs in general. This is my own internal struggle. I started writing because it was an outlet for me emotionally. If someone wants to read it, fine, and if they don't that's OK too.  Lately though, I've been worried that people will just roll their eyes when they see I've posted another blog. Dumb - I know, especially because the blog is more for me than anyone else.

In a more positive light, it's the holiday season. As much as I dislike the cold and snow, I absolutely love this time of year. I am hosting my first Thanksgiving with my mom's side of the family. This will be my first turkey. I am totally stoked. We always put the Christmas tree up the Friday after Thanksgiving, which is one of my favorite things to do with the kids every year. I am also almost done Christmas shopping (which for anyone who knows me well, this is no surprise.) I've got so many fun and amazing things planned for the last 7 weeks of 2019 in addition to Thanksgiving at our house that it's hard not to be happy and excited. I have two ornament exchanges, hopefully two book club meetings (but with Christmas in the mix we'll have to see), Desmond's 11th birthday, and the obvious family celebrations for Christmas. Last Christmas I was a mess. I am so thrilled that this Christmas I'll feel alive again! P.S. my hair is getting a little mullet-y. So, if anyone has any cute haircut ideas, send them my way. I'd like to get a trim before Thanksgiving!!!

A New Norm

I beat cancer! I finished PT on my arm! I’m working my way through pelvic floor PT! I meet with my new psychiatrist Tuesday! I am getting there... But whose body is this?

I look in the mirror and am 100% satisfied and happy with the choice to not get reconstruction. I look in the mirror and trace the lines of my scars and think “good riddance”. I look in the mirror at this curly mop of brown hair and think “not bad.”

2015 vs 2019

I also look in the mirror at this belly fat as a result of medications, treatment, fatigue, and surgery in disappointment. I look at the size listed on the tags of all the new pants I’ve had to purchase with sadness. I balk at the fact that half of my long sleeve shirts are too tight around my upper arms to wear to work. I cry and feel the urge to scream when I’m fatigued after doing something as simple as putting my daughter to bed at night. I shake my head at the fact that my thighs and butt are the biggest they have ever been in my entire life, including pregnancies. (Who doesn't like a poppin' booty, though? Am I right?) I get crazy hot flashes. I get mood swings. The only time I remember being this emotional was when I had postpartum depression, which overlapped the beginning stages of my divorce. It seems silly to focus on these physicality of it all after I just beat cancer, but here we are.

My shoulders hurt. My neck hurts. My head hurts. My vagina hurts. My right hand hurts because nephropathy is a bitch. Something always hurts. I'm cranky and tired. This is my new norm. I am working through it, but it’s so difficult for me to accept this as my new norm. 

I am exercising 3-4 times a week to work toward getting more energy and getting rid of some of the excess weight. I joined a LiveStrong cancer survivor class at the YMCA that comes with a free gym membership. May as well take advantage of it!

Shrimp & Veggie Kabobs

We recently made the decision as a family to go lacto-ovo-pescatarian.  Someone educated me recently that this is the proper term for what our family practices when I mentioned we’d decided to go pescatarian. (Thank you John  http://thisisareal.company/) Not to say we won’t splurge on the occasional chicken, beef, or otherwise dish, but we’re trying to focus on more of the AICR recommended foods for fighting cancer. https://www.aicr.org/new-american-plate/ I have a freezer full of venison that will not go to waste, but we are going to focus on a plant based diet for the rest of MY life.

The kids can’t be genetically tested until they are 18 and can legally consent to the testing themselves, but the truth is they are high risk. Anything that is within my power to help lessen their chance of getting cancer, I am going to do. I would also like to think I have SOME control over my own chances of  re-occurrence. In addition, my husband eats like crap. I am trying to reign that in. Honestly, there is a very high chance some of my recipes will be blogged about soon. I am trying to be enthusiastic about this. Stay tuned.

Big day

It’s been a while since I wrote. I’ve been busy. Family threw me a “Brave Betty Beat Cancer” party a few weeks ago, and it was a lot of fun. The whole situation still feels surreal most days, almost like I watched somebody else go through everything over the last 11 months. Almost like it wasn’t really me. There have been some unexpected hiccups that are being addressed, one being this week I have to start pelvic floor physical therapy. Maybe in a few weeks I’ll be ready to talk about all of that on the blog, but today is not that day. Today I would just like to write about today.

Today was a big day. Not only was it my last day of physical therapy for my arm, but today was also my first follow-up appointment with my oncologist since surgery. When I woke up this morning I didn’t expect to feel the way I feel right now, but here I am with all the feels. 

While I was going through the motions of my last physical therapy appointment and discussing with the therapist how I had finally taken that free gym membership and signed up for the LiveStrong program at the YMCA, I found myself choked up. Every time I reach the end of some step in my treatment I feel sad, nervous, and hesitant. In my head I have this expectation that I should be happy, but I’m just not. I’m anxious. My last day of PT did go well, though. Kari took a selfie with me and we hugged goodbye. She told me anytime I have questions I can just avoid my co-pay, give her a call, and she’ll provide free advice over the phone. I will miss her. Our kids are the same age, we have a lot of the same interests, and it’s nice to have someone tell me regularly that I’m making progress on my arm.

Immediately after physical therapy I headed to the hospital for labs and to meet with my oncologist for the first time in four months. I didn’t have any expectations on what I would feel when I went to my appointment today, in fact it hadn’t even crossed my mind. So, I surprised myself when the receptionist printed out my oncology bracelet and my eyes welled up. It’s been a long time since I had to wear one of those bracelets. I didn’t like it. When I was going through chemo and was there every single week, sometimes more than once a week, it was no big deal. I threw those bracelets on like they were part of my outfit and never thought twice. Today, however, I didn’t want to wear it. I hated the fact that I had to wear it. I almost cried when she put it on me. 

Is this how it’s always going to be? Am I always going to feel this anxiety every time I go for a check up? 

During the visit my doctor asked me how I was feeling. I admitted I am experiencing a lot of anxiety, but I didn’t give her specifics. I think it’s because still being emotional about all of this is embarrassing. It shouldn’t be, and I know that. People are constantly telling me how happy they are for me, asking about how relieved I must feel, and I am, but I’m also super paranoid all of the time. 

My blood work all came back normal and tomorrow I will get the results back from the tumor marker test. Assuming the tumor markers all come back normal and nothing is high I won’t have to have an MRI or a CAT scan. My oncologist did recommend that if it seems like I have too much anxiety over everything that I should seek out professional help. My husband and I had already discussed this, and it’s on the agenda. I just haven’t taken those steps to actually find a new therapist yet.

After my oncologist appointment I bought myself some chocolate (don’t judge me) and headed to the YMCA to meet with the trainer who will be leading the LiveStrong class I joined. I’m excited and nervous all at once about starting this class. I’m thrilled at the thought of getting some energy back. I’m also thrilled about the idea of shedding the 20 lbs I’ve gained since starting treatment. 

As I write this, sitting on my hammock in the backyard cuddled up with Evelyn and Sookie, I think to myself how stupid it is to ever feel anything but blissful. I know part of my issue is hormones, or lack thereof. Part of it is the knowledge that life is short. Part of it is pure, unadulterated terror. Most of the time I feel great; happy, thankful, and excited to be alive. It’s those few times a month when something triggers the anxiety that I really struggle, but I am working on it.

CAMP KESEM

Next week my children will be attending their first week-long summer camp. We drop them off on Sunday morning, 8/11.  It falls the same week that Shamus would usually go to Bucks basketball camp, but he decided he didn't want to go this year. So, that worked out. 

They will be attending Camp Kesem. https://www.campkesem.org/about-kesem 

Years ago, twelve years ago to be more specific, a friend of my grandfather's died of cancer. She was young, beautiful, and had two young daughters.  I didn't know her well but did go to breakfast with her and her family quite a few times with my grandpa in the years prior to her diagnoses. After she passed, breakfasts continued for a while with her husband, daughters, and my grandpa.  The younger of the two stood up as flower girl in my first wedding, and the older helped pass out the wedding programs.  I stayed in contact for a little while after, but did eventually lose touch. 

I was supposed to be my grandpa's "plus one" to the husbands wedding to his current wife years later but was sick the day of.  I would have loved to go.  I ran into them at State Fair three years ago while I was there for a concert.  It was a brief encounter, but I did enjoy seeing them.  I have been Facebook friends with the father and oldest daughter for years.

The girls went to camp each summer; Camp Kesem.  This was a detail of their life that I took for granted.  I thought it was wonderful that they had this amazing place to make friends who had similar family experiences as them, but I never imagined my children would be going.  I never imagined I would be the "Cancer Mom". Just typing that I’m starting to get weepy.

I am excited and nervous for them.  Desmond is surprisingly the more excited of the two boys. He is not thrilled about an entire week of outdoors and no electronics but told me today that he’s really looking forward to camp. Shamus is a little more nervous. He told me this morning he’s worried about not liking the food and staving the whole time. I explained this is a good opportunity to try new things, and maybe he’ll find out he’s not as picky of an eater as he thinks. (Wishful thinking.)

The boys get to pick “camp names”. Shamus chose “String Cheese”, and Desmond chose “Bones”.

The boys, Tyler, and I had a long talk about camp. We told them there will be other children there who’s parents aren’t done with treatment, who still have cancer and some that may even have parents who’ve died. The cancer journey is never really over, for the patient or their family. I can’t undo what they’ve been through any more than I can undo what I went through. I told them that I am hopeful that camp gives them a place to make friends who can understand the complexity of the emotions they’ve experienced over the last 10 months because they’ve been through it, too.

Camp Kesem doesn’t focus on cancer, it focuses on the children. There is only one day, from what I understand in the parent packet I received, where they really sit down and focus on cancer. Overall, though, it’s just a safe place for kids to be... kids.

I’m going to miss them. I wish I could be there and see everything they get to experience, but I know it’ll be good for them to get out there on their own with kids in similar situations as them. 

I desperately hope they have a good time and take only positive memories away from the experience. I hope they want to go back each year. I also hope there aren’t any phone calls home about bad behavior, but let’s be honest, if there are, it’ll be for Shamus.  Here is hoping for the best!

Side Effects

Let’s talk about side effects, shall we?  More specifically radiation therapy side effects, since I covered most of my chemotherapy side effects in previous blogs.

https://www.cancer.net/navigating-cancer-care/how-cancer-treated/radiation-therapy/side-effects-radiation-therapy

If you check out the cancer.net site regarding radiation, it gives a colorful list of possible side effects, both short term and long term, of treatment.  Some of the short term effects of obvious; skin irritation (dryness, itching, blisters, peeling, soreness – all of which I have) and fatigue.  Fatigue was one side effect that didn’t hit me as hard with radiation as it did with chemo, thankfully.  I am still struggling this week to get out of bed, but part of that is I am having trouble sleeping because of the discomfort under my arm from my burns.  Otherwise, the fatigue hasn’t been too bad.

As far as long term side effects, it’s still a little early to tell.  The list from cancer.net is as follows, along with some side notes from yours truly.

Radiation therapy aimed at the chest may cause these side effects:

Difficulty swallowing – no difficulty swallowing, but I have had a sore throat for 2 weeks, which the doc said is from the radiation hitting the lymph node in my neck.

Shortness of breath – nah, none of this.

Breast or nipple soreness – no boobs, so no problem!

Shoulder stiffness – yes, yes, yes! Dear God, both of my shoulders are a mess! I am also having some sharp chest pains on the cancer side, which just started this week.  Since I do not have any more treatments, I have to make a call to the radiation oncologist to see if he has any thoughts on this.  If I had to guess, it’s muscle pain from my shoulders and neck being so goddamn tight.

Cough, fever, and fullness of the chest, known as radiation pneumonitis. This happens between 2 weeks and 6 months after radiation therapy. – I’ve had an on and off-dry cough, but the doctor doesn’t think it’s anything to worry about. We are keeping an eye on it.

Radiation fibrosis, which causes permanent lung scars from untreated radiation pneumonitis. The radiation oncologist knows how to lower the risk of fibrosis. – see above.

One thing they don’t mention is the cording and the lymphedema.  I already had cording from surgery, since my surgery including taking out lymph nodes.  The cord I had after surgery was wicked, and my therapist had worked it out quite a bit before radiation even started, but warned me it could get back again once I began treatment.  Today at PT, she took a look and it wasn’t horrible, but she couldn’t thoroughly check as much as she wanted to because my chest and armpit and basically ground meat. So, she didn’t want to mess with the area and risk breaking open my skin or popping my blisters.  

As for lymphedema, I was hoping to avoid it given that my lymph nodes tested negative during surgery, and I didn’t have to have any additional taken out.  I noticed a week ago my arm and fingers on the left side were swollen, but I’ll be honest, I was in denial.  Oh, can’t get my wedding ring off… meh, I must just be too hot… it’s the weather.  Of course, when it cooled off I still couldn’t get my ring off… whoops.  I so badly didn’t want lymphedema.  Today at PT, the therapist confirmed she thinks I am starting to get it.  She gave me some short term compression sleeves for my arms to wear for the next few days to see if it helps, as well as athletic tape on my hand since my hand seems to be the worst of it.  She massaged the area today and it made the swelling go down significantly just in that short time.  I am hopeful I won’t have to wear a compression sleeve for the rest of my life.

All in all, my first week without radiation hasn’t been life-altering in any way.  Physical therapy sucked, but only because my skin is so painful and damaged right now.  Once I am a little more healed PT will work wonders on the cording and lymphedema, and it’ll get my arm range of motion where it needs to be. 

Pieces of the People I love

There are pieces of people I care about that I carry with me; a phrase or word, a song, an item, or a scent that takes me back to a memory.  They are unique to me, and it's entirely possible the memories and triggers aren't even recalled by these individuals that I think of when they occur.


I have a book, 'Twas the night before Christmas. It is one of those record-able hallmark books that my grandfather recorded and gave to my son Desmond for his first birthday. My grandfather is gone, and the story now means so much more to me. It's no longer just a clever poem about Santa Claus. Now it's the book Grampy recorded for Desmond, and his voice is all I hear regardless of who's reciting it.  That book, dandelions turned to puffy balls of seeds, willow trees, as well as the smell of coffee and taco omelets will always bring me back to him.  Ironically any time I eat cherry pie or green beans, both of which he hates, I also think of him.

The smell of a hospital first thing in the morning;

that sanitized, stale scent always takes me back to when I was 19 years old working in the cafeteria.  Odd as this may seem, the scent reminds me of my mother because she and I worked at the hospital together.  The smell of blueberry muffins also reminds me of her, and the smell of freshly cut grass.  Why freshly cut grass?  It reminds me of the summers of my childhood, which inevitably take me to some memory with my mom. A few other things that make me think of her as well are penguins and bells.  I can't go to the zoo, or see any penguin items in stores or on memes without thinking of her. During my childhood she collected various bells.  I remember playing with them as a child, listening to each of their unique jingles. These days, however, when I see a beautiful or different bell in a store I have to fight the urge to buy it for her since she doesn't collect them anymore.

Who doesn't love a good Qdoba or Chipotle burrito.  Chipotle is my favorite, and I can't eat it without my cousin Kathleen popping into my mind.  We have a shared love for it.  Anytime I hear a new dirty joke, and whenever I try a new restaurant regardless of what kind, she is on my mind. Michael Bolton, the smell of a camp fire, and the song "You are so beautiful" take me back to some memory with her.  The list goes on, but if I start going I wouldn't be able to stop. We have countless years of memories that we share, and it's easy for a million little things to bring me back to one that she is in.  Literally, she crosses my mind every day for one reason or another.  (It probably helps that we talk via text almost every day, too.)

I've got a raggedy old zip up hoodie with the words "The Walk" printed in red along with silhouettes of 3 figures; the Hanson brothers. It's the most worn out article of clothing I own, but I'll never get rid of it. Every time I look at it my mind goes to my best friend Desiree.  This item along with countless songs and artists (not just Hanson) bring me back to some memory with her. Music is this thread, one of the many threads, that binds her to me in my mind.  I can't look at a pair of roller blades without remembering two awkward teenage girls meeting up on them at various places the summer before sophomore year of high school. And Grey's Anatomy, yes the show, will always belong to us.  I don't hear Ellen Pompeo's voice without my brain instantly thinking of Desiree.

Montana, not the state, but the the word.  Any time I hear this word it takes me back to a dog; a redish brown mutt with the sweetest temperament.  He belonged to another of my best friends; Melissa.  I also get a vivid scene of a young woman sitting criss-cross on a hard wood floor singing "Black Horse and a Cherry Tree".  This song, along with most country hits between the years of 2003-2008 by Phil Vassar, Sara Evans, and Tim McGraw reel me back to some memory with Melissa.  Don't even get me started on flaming hot cheetos and Roxette.

The song "Twinkle Twinkle little star" will forever remind me of Desmond singing in the shower. The song "Uptown Funk" will forever remind me of Shamus. To this day he randomly bursts out in that song.  Elmo and Elsa from Frozen remind me of Evelyn right now, but I am sure those things with evolve as she grows.



These are just the big ones.  There are dozens of things that remind me of dozens of other people.  Memory is a funny thing.  Obviously these same sensory cues can trigger negative memories, too.  I have enough of them, that you'd think it would be as common as the positive ones. They are a rare occurrence, though. Maybe it's how happy I am and how positive my attitude is?  Thinking happy thoughts, being content with your life, and your brain naturally leans toward the happy memories?  Makes sense to me!

Achievement Unlocked: Cancer Treatment Complete

The day is finally here! 

After nine long months of treatment; chemo, surgeries, and radiation, I am finally completely and totally DONE. 

Cancer sucks, treatment sucks, it has SUCKED, but it's OVER. 

I don't ever want to do this again... I will if I have to, but for now I am going to keep praying that the cancer never comes back.

My skin is still a burnt piece of toast right now, but it's done getting fried.

Bring on the rest of my life... #BraveBetty

Stay tuned for an invite to the Fuck Cancer party that my mother-in-law and sister-in-law are throwing me.

www.fuckcancerbravebetty.com

The Truth About Death

Life is fleeting.  We all have the same fate, one that can't be avoided no matter how we live our lives.

You can be the kindest, most amazing person in the world.

You can be a real prick.

You can be rich or poor.

You can be single or married; a parent or not.

You can be young or old.

You could be a man, or you could be a woman.

You can be black, white, Asian, Native American, or Hispanic.

You could be gay, straight, bi, or trans.

It doesn't matter.  It doesn't discriminate.

You could be sick.  You could be completely and utterly healthy.

One day you're alive.  The next you aren't.

You could play guitar... and grill the best burger in the world... and always come to work with a smile on your face and a "hello" for anyone you walk past. You could have four children.  It could be your birthday...

My place of employment is filled with people in mourning today.  We lost one of the good ones.

RIP Guy.  You will be missed.

I have a dilemma

My emotions have been all over the place lately, which brings me to my dilemma.  I have a friend.  I really like this person.  I think they are fun, funny, a blast to hang with, we share many of the same opinions, and we have kids the same age so it’s easy to find common ground.  They were there for me through this whole crazy cancer thing, super supportive, and a great friend to have around when I needed it.  Lately, there has been a clear disconnect, but I’m not sure where it’s coming from.  It isn’t every time we talk, though… Some days I feel it, and other days I don’t.  Today is one of the days I felt it.  I’m not sure if I should ask this person about it, or just let it pass like it has seemed to do the last few times it’s previously occurred. 

When I say clear, I mean this person is short with me, if I try to invite them out or make plans with them they blow me off, when they discuss doing something we’d usually do together they extend no offer to me (and I’m not one to invite myself), and moments after being cold to me, a thing I could blow off as just busy or having a rough day, they turn around and joke around and give off their usual warm personality but toward someone else.

Am I jealous? No.  Am I sad? Very. 

This is someone, like I said, whose company I truly enjoy, someone I appreciate.  I’d like to continue being friends, however, one-sided friendships aren’t friendships at all.  I could distance myself from them the way I feel like they’re starting to do to me.  I can put them into the acquaintance category and move on.  It’s difficult though, especially when it’s someone you really like and who you think is a pretty amazing person. If this person no longer wants to be my friend, I'll be totally bummed.

The easy answer is obviously talking to the person.  If we are as good of friends and I thought we were, it shouldn’t be that difficult, but it is.  If I confront it, and this truly is the end of what I thought was a good friendship, I think it’ll hurt more than trying to ease myself out of it on my own terms and in my own time. I am paranoid that because my emotions are all over the board thanks to dear ole menopause, I could be reading this all wrong and things could be totally fine. If it's nothing, and they have no idea what I'm talking about, then I'll feel silly. Am I just being overly sensitive?

My biggest hurdle to get over is myself.  I don’t feel very confident in my emotions since the hysterectomy.  They truly are bonkers.  I don’t want to jump to a negative conclusion when there’s really nothing there to be worried about.  Yet, the last 3 weeks I haven’t been able to shake this feeling. I bought myself a cup over the weekend that says "Worry less, Live more." If only I could.

This person doesn’t read my blogs, they aren’t very active on Facebook.  So, I come to you, people who read my blogs, and ask you… am I just being a big baby?  Do I give up? Do I talk to them? Do I do nothing and wait it out?  I just don't know...

Security blankets and Panic attacks

I am like a child, the hospital is my security blanket, and the closer I get to the end of treatment the more anxious and panicked I feel.

If I am going to the hospital regularly, and something is wrong, someone is there to catch it.  Some doctor or nurse always has their eye on me while I'm going through treatment.  When radiation is done, I'll be on my own.  No doctor to keep an eye on me. Nobody reassuring me everything is okay.  What if it comes back? Every head ache, every stomach ache, every sore muscle, back pain, or weird tingle in my body and the first thing I think even now is "it's back".  Who can, with complete confidence, tell me it isn't back... or confirm if it is?  What if I miss something?

I've got two more rounds of radiation this week, my last five rounds next week, and then I'm done with active treatment.  I have an appointment with my surgeon on August 23rd, and then with my oncologist on September 23rd.  After going to the hospital a few times a week, or every day in the case of radiation, going a month without seeing someone is a strangely frightening idea to me.  So frightening, in fact, that on my way to my car this morning after treatment the thought occurred to me that I only have 7 more rounds of radiation to go, and I was pilled with instant panic.  I thought maybe I'd have an anxiety attack right there in the parking structure outside of my vehicle, but I didn't.  I got into my car, turned on the radio, and busied my mind by singing the songs that played while I drove to work. Small victories.


Last night I had trouble sleeping because my arm pit is sore from radiation and I had some bad dreams. The skin is starting to peel under my arm, and there's a constant stinging feeling.  The skin across my chest is also sensitive to the touch but not nearly as sore.  Advil and Tylenol haven't helped, and although I have a prescription for percocet, I hate how it makes me feel and don't want to take it, not even before bed, if I don't have to.

My dreams were non-descriptive, and the most I can remember was Evelyn trapped in a concrete walled room crying "mama".  When I woke up, it turns out she wasn't crying mama. The dog was whining to go outside, and it was 2:00 AM.  I think I fell back to sleep after a little while, but it's hard to remember.  What I do remember is tossing and turning because so many positions hurt.  I eventually took of the t-shirt I had on because it was rubbing against my armpit.  The quality of my sleep was much better after that, because the next thing I knew my alarm went off.

I chugged a bottle of water when I woke up this morning, and now I am on my second bottle after two cups of coffee.  My head is fuzzy and throbbing, my stomach is sour, and my shoulders feel like they're so tight they're going to break me in half if someone touches me.  It's probably a mixture of sleep deprivation, anxiety, and the position at which I lay every day for radiation (arms up, un-moving for 15 minutes.)  Whatever the causes, I feel like shit today.  What I want is a cold shower and a long nap.  What I have is a computer screen filled with orders and emails, and an ear filled with customer phone calls.  I thought briefly of calling in on my way from the hospital to work, but figured the worst of it would probably pass when my head snapped out of the mini panic attack.  I've been here for almost three hours now and so far I still feel lousy.  I am still holding out hope that I'll feel better soon. 

I am currently on lunch, picking at a Chipotle burrito bowl, hoping food perks me up.

Here's hoping...

GOOGLE Is Not Your Friend

Stage 3A triple negative breast cancer at age 33.
Fuck me, right?

The first thing I did when I was diagnosed was google everything. Guess what? I was convinced I was going to die.

I received a good prognosis from my oncologist. I had a full response to chemo and she told me recurrence was unlikely... however, because I was stage 3, I had MANY questions after my initial appointment that I needed clarified.  Once I hit the 5 year mark without mets, then I'll only have a 10% change of recurrence. IF I hit the 5 year mark.  At stage 3, survival rates drop significantly from 93% survival rate at stage 2, to 72% survival rate at stage 3.   https://www.medicalnewstoday.com/articles/324272.php

Of course, all of this depends on how your overall health is, how old you were when diagnosed (over 35 is a better outlook; sadly for me I was 33), how many children you've had, if you breast fed, the list goes on.

Not the point; the point is if this shit comes back, my survival rate sinks to 22%. GOOGLE IS NOT YOUR FRIEND.

Many of you know I've got other stresses in my life. I am doing my best to alleviate these, and hopefully in a few months I can forget all about it and move on.  All I want to do is spend as much time with my children and family as I can, while I can. Just in case.  That's my priority now and for the rest of my life - however long that is.

I have a bright outlook, I swear I do.  Everything that happened in my case was best-case scenario. Full response to chemo, even though I had lymph node involvement my pathology on my lymph nodes was negative at the time of surgery, I had a double mastectomy and full hysterectomy to lessen my chances of it growing somewhere it shouldn't again, and now I am undergoing radiation. I am doing everything possible to be, and stay, cured. Just this past Saturday I woke up with a scaly red, pimple like rash over the area I receive radiation in.  Small prices to pay to be healthy.

BUT...
There are no guarantees in this life.
I could get hit by a truck crossing the street.
I could be struck by lightening.
I could choke on a chicken bone.
I could get metastatic cancer.

I stopped looking things up on the internet pretty quickly, but every now and again I get sucked into the numbers game.  I like to remind myself of my odds.  I may not like the numbers, but I have to look at them.

The odds only matter as much as I allow them to.  I am going to try to keep myself as healthy as I can, and that is all I can do.  I am going to fill my home with love and laughter, I am going to live in the moment, and god damn it, I am going to stop googling... for today.

Xanax

I went to a concert at Summerfest with my best friend Desiree last night.  I was nervous the whole day about going, just a mess; stomach ache, leg bouncing, rocking more aggressively than usual... the whole shebang.  I've never been a fan of crowds, but it's been years since I've needed help with the anxiety it causes.


I took Alprazolam along with anti-depressants when I was going through my divorce back in 2012-2013 because I suffered from panic attacks and having a hard time coping with it.  I haven't needed a new prescription for them, though, since 2015... or I hadn't... until I was diagnosed with cancer, that is.

With Tyler's help I'd gotten control of my anxiety to the point where I didn't need to take anything anymore.  I was able to go places again like concerts and movie theaters without having a panic attack. Unfortunately this thing I thought I had contained reared it's ugly head as soon as that biopsy came back positive.  It started as sleepless nights... I used a meditation app suggested by a friend some nights, but it didn't always work.  It helped when I first went to bed, but was useless when I woke up in a panic in the middle of the night.

The middle of the night was so isolating.  I had so many panic attacks alone at night for the first few months.  Those were the nights; the nights where my mind and body were out of my control from the anxiety, where the Xanax came in handy.

So, last night I went to Summerfest with my best friend Desiree.  I made a comment to her about stopping at home to take a Xanax, and the realization that I don't talk about how much my diagnosis hurt my mental health hit me like a freight train.  Her response was, "Are you OK?"  My first reaction was to think to myself what the heck is she talking about?  Then it occurred to me... she didn't realize I was still having anxiety issues.  I mean sure, I talk about how sometimes I had, or have, a hard time with things, but apparently I don't talk about how extreme it can be often.

I am a confident person, and I come off as confident and honest in these blogs, but even a confident person can struggle with anxiety and panic attacks.

I am in remission.  I beat cancer.  Treatment is ALMOST over (today marks halfway through radiation!)  Yet, here I am, still struggling with the anxiety that came barreling back 8 months ago.  I am hopeful I can get back to a point where I have it under control without the help of anti-anxiety medication again, but for now... sometimes I still need a little help.

That being said, I had an awesome time at the concert.  Mmmbop, bitches.

A Week Of Nonsense

A week of nonsense.  That is the only way to describe the inner workings of Brave Betty this week… nonsense.  I went back to work this week, 6/17/19.  I foolishly assumed going back to work, being around adults, and keeping myself busy with work would help distract me from the CRYING you may have previously read about.  I was unfortunately mistaken.  It hasn’t changed the hurricane inside of me, but it has just resulted in me trying not to cry randomly throughout the day at work. 

On Wednesday I called my mom on the way home because I felt like a mess inside, fighting off the urge to cry most of the afternoon. She kept me in check for the ride home, thankfully.  However, I walked in the door and Evelyn said “Mama!” in an amazingly sweet, excited voice, and Shamus ran up to me and gave me a big hug, telling me he missed me and loves me.  It feels stupid to write, but those little sentiments of love pushed me over an already teetering edge.  They weren’t sad tears, just tears.  Let me point out, this is NOT normal for me. I hate crying.  I usually only cry when I am pissed off.  This is, as Jasmine would say, “A whole new world!” 

 

I know that surgical menopause comes on all at once because instead of hormones slowly declining, the levels disappear overnight.  This results in stronger, more aggressive menopause symptoms.  How wonderful!  These are only the short term effects, too.  Long term I am at risk for osteoporosis and heart disease without estrogen to keep my body in check – more on that can be found on this site: https://www.menopause.org.au/hp/information-sheets/756-surgical-menopause  I plan to talk to my oncologist when I go back for my checkup in September to discuss hormone replacement therapy.  Lucky for me (and also unlucky for me for having a rare type), because I have triple negative breast cancer, I can take hormone replacements if needed.  Women who have an estrogen or progesterone receptive breast cancer rarely if ever are allowed HRT.  Triple negative is currently understood to not be affected by hormones.  (This also means hormones therapy can’t be used to fight it off, either… which is why my cancer treatment plan has been so aggressive.  Your options are limited with TNBC.)

I have not been having as many hot flashes as I had when on chemo, but the night sweats are never-ending. I wake up at least twice, sometimes three or four times, during the night drenched in sweat, ripping off my pajama pants, and opening the back door to let the cool night air relieve my discomfort. I am sure part of my emotional state is lack of sleep.  I’m the kind of creature who needs seven or more hours of sleep to feel functional, not to mention radiation exhausts my body.  Any less than seven hours and I tend to have trouble the next day. I’ve been averaging about six hours of sleep lately, some nights more, some nights less.  It’s not that I don’t want more.  I go to bed around 9:30 PM and wake up at 5:30 AM on the weekdays, but that’s IF I can actually fall asleep. Then I always wake up during the night.  Often times I can’t get back to bed for an hour or more.  I sleep on the couch most nights.  I told Tyler it’s because he snores, ha, but mostly it’s because I don’t want to wake him up when I wake up and the door is closer to the couch.  I tried sleeping in our room last night, but I woke up three times. On the third time, around 3:30 AM, I was so hot I couldn’t stand it anymore and got out of bed.  I went downstairs, stood on the back patio for a few moments, and when I was finally cooled off I tried to go back to sleep on the couch. The last time I recall seeing on the clock was 4:15 AM.  I must have fallen asleep shortly after that… and then the dreaded alarm went off at 5:30 AM.

Working out is supposed to help with fatigue.  I couldn’t do much aside from my PT stretches and walking before this week, and I did go on walks whenever I could at home.  I got the go-ahead on Thursday 6/13/19 from my gyno-onco surgeon that I could resume a light workout routine, but nothing moderate or high intensity until the 12 week post-hysto mark.  I started using free weights and a stationary bike at home over the weekend and every morning except today (Friday). I also resumed walking on my lunch break with a few work friends on weekdays.  Have a seen an immediate improvement in my energy level?  Sadly no, but I am hopeful if I keep it up, it’ll eventually help.

Weekends I try to get extra sleep but it never actually happens.  I have been trying to let Tyler sleep in. Now that I feel more like myself and am healing, I just get up with the kids and drink a lot of coffee to offset the tiredness.  I did request last weekend, however, that when he wakes up, instead of jumping right into the shower, he lets me take one first since I’ve been up for a few hours by that point. 

Until I am done with treatment I can’t even THINK about escaping the reality of cancer and the side effects like fatigue.  I am in remission, yes, but for how long?  I don’t think I’ll ever actually be able to take a break from any of this. I said to someone yesterday that I have become acutely aware of my mortality. I will always be afraid. 

There is light at the end of the tunnel, though.  Radiation ends 7/19/19 (unless for some reason the machine is down or something strange), and after it’s done I’ll just have PT a few more times and a few doctor appointments a year.  I can do that.  No more infusions that make me feel like I’m dying, no more radiation burning my body from the inside out, no more slicing and dicing.  Just simple, quick, and hopefully ALL CLEAR doctor checkups.

On an unrelated but humorous note, when I don’t feel like bursting into tears I feel like ripping off Tyler’s clothes.  Since I don’t have estrogen or progesterone coursing through my body anymore, all that’s left is testosterone. It catches me off guard. I've felt so crappy for so long, it feels foreign when it hits.  We can’t do anything to help that for about 7-9 weeks, when I’m fully healed from the hysterectomy.  TMI to put into this blog? Probably.  Do I care? Not one bit. 

Radiation and Potty Training

Welcome back to the wild world of Betty's cancer treatment!  On today's agenda we are covering my radiation therapy thus far!  Are you excited? I'm excited.  I've also started trying to potty train my 2 year old daughter... I am telling you, my life is just an explosion of awesome.

I've got a full week and a half of radiation down, and four more weeks to go.  My skin has begun to darken in a square shape, and I get periodic sharp pains under my arm throughout the day.  The most noticeable side effect is the fatigue.  By around 7:00 PM every night, I just about fall asleep standing up. 

All in all radiation itself is easy.  I lay down on a table for about ten minutes, on occasion holding my breath for 20 seconds at a time.  The whole ordeal, with changing my clothes and talking to the radiology technicians (mostly women, and one man), takes 15-20 minutes total.  If it took any longer, I swear I'd fall asleep on the table.

The girls; Michelle, Michelle, and April, are all extremely friendly.  They make me very comfortable when I go, which is half the battle in healthcare, isn't it?  I've only seen the man once, and to be honest I cannot remember his name... Keith maybe? Kyle?  Something with a K.  The thing I remember most was our conversation about how much each of us like beer.  He did my planning session where they fitted me with an air pillow so my positioning is correct every time I go.  I haven't seen him since.  My cousin Kathleen came with to that appointment and pointed out that he wasn't hard on the eyes.

I have a lotion they gave me to apply multiple times a day to help with my skin irritation that radiation causes. I haven't noticed if it helps or not, really.  I just put it on as directed.

As far as potty training, I forgot how much dedication it takes from a parent standpoint.  I know I have to watch her like a hawk, and I try, but I am really the only one doing it so it's not easy.  With the older two kids, distractions come easy.  On Saturday my daughter was prancing around in her birthday suit, doing really well as far as making it to the potty, but we sat at the kitchen table with the boys and while I was trying to help Desmond find a Lego piece for the set he was working on, a waterfall of urine covered the kitchen chair she was on, as well as the surrounding floor.  GROSS!  She thought it was the funniest thing... which isn't a good sign.

By Saturday night she used the potty herself, same with Sunday morning, but by Sunday afternoon she was crabby and had no interest in using the toilet.  She decorated many a diaper that night.  I did send her potty chair to the baby sitters this week... I sure hope she gets the hang of it soon!  The last few nights have been hit or miss. No real success.  Any and all pointers, advice, and suggestions are welcome.

What’s with all of the crying?

So, a fun new thing began these last two weeks... the weepies.

Walmart commercial for granola: crying.

Masterchef episodes that contestants cry: crying.

Evelyn is sick: crying.

Evelyn does something cute: crying.

Something good, bad, or stressful happens: crying.

The sun is shining: crying.

The boys say something sweet: crying.

I’m catching a cold: crying.

The list goes on and on... 

This total hysterectomy is a doozy.  When I think of mood swings I think of boughts of anger or frustration.  As it turns out, my mood swings involve tears... and lots of them. I can hold it together for the most part, but the tears come more easily than I’ve ever experienced before. This isn’t at all what I was expecting. Why am I not punching walls? Nope... no wall punching, just randomly bursting into tears. SUPER.

Cancer itself is an emotional journey, and it had already disjointed some of my control months before my lack of ovaries caused my current imbalance. However, with all of the recent good news you’d think the last thing I’d be experiencing is tears! It’s interesting, though. Happy things are almost the worst. The happier I am, the easier the cascade. My happiness overflows without warning, although at this point it shouldn’t be a surprise anymore.

I did a thing this week, a big thing for me; I burned the goodbye letters I’d previously began writing. It was only four letters (I had intentions to write about 10 more), but they’re gone. I cried (surprise) as I watched them go up in flames. It was a relief, letting them go. I had stopped writing goodbye letters and started writing thank you notes while I was still undergoing chemotherapy. It helped me stay positive, and also gave me some way to show everyone who’s been supportive that I appreciate them and all they do. I am lucky to have all of the amazing people in my life that I do. I held onto those goodbye letters, even after the thank you notes went out, until now. It was as if I’d been holding my breath this entire time, and now I can breathe again.

Radiation began Friday 6/7/19, and it went fine.  From what I’ve heard it progressively gets harder the more treatments you’ve had. I’m hopeful I’ll maintain the same energetic, goofy attitude I had during chemo. Exhaustion seems to be the #1 complaint from those I’ve spoke to, and when I’m tired... you may have already guessed, but I cry. I’ve got a hunch the tears aren’t going anywhere for a while, but let’s hope they’re the happy kind and nothing else.  Also, I would really like to not go back to getting the raging hot flashes I was getting during chemical menopause from chemo. Give me the tears, keep the hot flashes. Yuck!

Plans

I was watching the news this morning (I’m a CBS 58 or TMJ 4 kind of girl), and a thought occurred to me: I’ve started actually making plans again.

This doesn’t seem like a big deal to most. On an average day I’m sure everyone thinks about vacation, their home, or retirement. When those things crossed my mind the last 7 months, I’ve acknowledged the thought but never went any further. I even stopped putting into my 401K after I learned I had an advanced stage, you know, in case I died. 

Things I spent a lot of time planning during that time, however, were my advance directive, living trust, and will. You know... in case I died. 

Anyone who knows me can attest to the fact that I’m an over planner. I buy Christmas presents for the next year as early as the day after Christmas. I brainstorm birthday ideas for the kids months in advance. I love planning. 

After my diagnosis making plans took a nose dive. Did I buy Christmas gifts for the next year during after Christmas sales? Sure, a few, but nothing like my norm. Partly because my money has all gone towards paying medical bills, and partly because I wasn’t sure if I would be here. I figured the few I bought Tyler could use for whomever, should I not be around to give them. (You know, like if I died.)

We have talked about selling our house and moving out of the city and into a suburb, but after my diagnosis we stopped talking about it seriously. It became a pipe dream, and our main concern became not losing our house instead of buying a new one. After last weeks’ good news we began talking about it more seriously again. We started asking each other questions like, “do we change this to what we want, or wait in case we decide to move?” It was no longer hypothetical. We were having real conversations about the future. How did I not notice this at the time?

Desmond and Evelyn’s birthdays were a shell of my normal planning. Desmond’s 10th birthday fell 6 weeks after my diagnosis. We had a sleep over with his friends planned that we had to cancel, and instead family dropped by as they could if they had presents for him. There was no party for Evelyn’s 2nd birthday. We went to brunch, we celebrated, but I didn’t plan much aside from choosing the date. Shamus’s birthday is coming up at the end of July, and Friday night I asked him what he wanted to do. His first response was “Wait, I get a party this year?” Followed by “I want to do something with Hunter and Mason.” (The boys’ best friends.) The boys’ excitement over the question was a blow to my heart, but thinking of it this morning makes me happy, knowing the whole family is feeling the positive effects of remission.

Tyler and I have brain stormed vacations we’d like to go on, but even those we stopped talking about. Sure we could repeate things we’d already talked about, but any new plans, any new brain storms, ceased. In fact, previous plans we just assumed wouldn’t actually happen. 

Then, last night we began planning our next vacation. During our discussion I told him that once we had some disposable income again, that I wanted to LIVE. Not just day to day, but I want to go and do the things we talk about. We are not adventurous, let’s be clear. Our dreams are an Alaskan whale watching cruise and eating our way around the US. We don’t want to climb mountains or travel the world. We want food and whales. During our conversation last night the weight of my attitude shift hadn’t occurred to me. 

As I sit here looking out the window into my backyard, thinking about how we’re actually PLANNING these things, I have tears sneaking out of the corners of my eyes. Am I afraid the other shoe will eventually drop? Absolutely. But it’s incredible to me that for at least a brief time (hopefully a LONG time), I can plan again.