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...