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. 

PT, Rads, Remission

I have no idea what I was thinking having two surgeries in a three week period. I’m exhausted! My chest is mostly healed but is now sore because my muscles are settling. My abdomen is sore because I’m seven days post major surgery. My five little incisions from the laparoscopic/robotic hysterectomy are still red and tender, and to be honest every time I have to use the bathroom it’s uncomfortable. 

My body is getting used to something being missing, and I have to be patient with it. The gyno onco surgeon said the hysterectomy would be an easier surgery and recovery, and she said I’d probably feel pretty good two days post surgery. Don’t get me wrong, I do feel a little better every day, but I couldn’t easily get up from sitting on a chair or in a car until yesterday, which was six days post surgery. Getting up from laying down isn’t as hard as the first few days after my mastectomy, but it’s still difficult. It doesn’t occur to you how many abdominal muscles you use to get up until they hurt like hell to use. That, in combination with my chest muscles being sore, make for some creative, and I’m sure hilarious to watch, attempts to get up in the morning. The hysterectomy itself went well, my IUD did a good job of keeping my endometriosis in check, and the surgeon said she didn’t have to remove as much scar tissue as she was expecting while she was in there... now I am just waiting for the super fun menopause symptoms to begin.

I was aggressive with my plans during the week, thinking I’d be up and moving around much more than I was actually able to. I ended up having to cancel breakfast plans with someone, then had to get a ride from my MIL to one of the kids doctor appointments the same day. It all worked out, but I am so disappointed that even today I still don’t feel very good. I’m so damn tired.

The boys were off school Friday, 5/24/19. I managed to drive the three of us to an appointment I had at the hospital, then to get lunch, then to the vet for one of the cats. Although I had to shift myself a few times during those rides, I was happy that the worst of the discomfort had passed, and I felt well enough to drive. I was exhausted by the end of the day, but at least I achieved something. I ventured out of the house for a few hours Saturday and today (Sunday), as well, but mostly I’m still taking it easy.

The week wasn’t all bad. On Thursday 5/23/19, Tyler picked me up and we got my official prognosis from my oncologist. She was quick but covered the bases. I began with stage 3A breast cancer that had metastasized in my lymphatic system; a tumor in my left breast and a tumor under my left armpit. After 16 rounds of chemo, I had what they call a total response. The first twelve rounds of chemo killed the cancer in my breast and shrunk the armpit tumor by half. The last four rounds finished off the armpit tumor before I had surgery. During surgery my lymph nodes tested negative for any sign of residual cancer, and after being sent to a pathology lab, my breast tissue from both sides also came back with no signs of residual cancer. My uterus, ovaries, and fallopian tubes also came back negative for any signs of cancer from the pathology lab. This means no addition chemo is needed, it means after radiation treatment I’ll have a “10% chance or less” of re-occurrence, and it means I’m finally in remission!

I do still have to have radiation. The type of cancer I had, triple negative, and how advanced my stage was, means radiation is a must. It’s a fail safe to ensure the area won’t ever start growing cancer again. Total I will have 28 rounds. I get fitted for my arm pillow on 5/30 and start rads the following week.

I start physical therapy Tuesday 5/28. I’m not sure how long I’ll have to go, but I feel like I’ve already got a pretty good range of motion in my right arm. My left arm definitely needs some work, though. 

I’m thrilled that I’m officially in remission and absolutely plan to party in celebration of this, but I don’t have the energy or feel well enough for that party just yet. In addition, strange as it may seem, I’m overwhelmed with everything I can’t do. If I walk, lay down, or sit too long I get cramps, if I move the wrong way I hurt my chest, arms, or abdomen. I want to DO things, but I can’t DO things. I’m not allowed to push or pull anything, I’m on a weight restriction of 10 lbs or less for another week, and after that a restriction of 20 lbs or less for four weeks. I can’t clean, take care of Evelyn, and can hardly take care of myself. I’ve been living the cancer life for almost eight months now.

Asking Tyler to do things for me or around the house when he’s already been doing so much for so long gets harder and harder. He is also exhausted, and makes sure to remind me every day how exhausted he is. Sure, we’ve got family offering to help, but everyone has already done so much. I hate having to ask for help. I thought it was hard to ask for help when this all began, but honestly I think it’s harder now.

We’re drowning in laundry that I can’t help with exception of putting away, and even then I can’t reach with my left arm to hang things, so how helpful am I, really?  I’ve started relying on the boys to help more with chores like vacuuming and bathrooms, but they’re only here Wednesday, Thursday, Friday, and every other weekend. It’s also not always as easy as “asking”. They’re 10 and 8, so often it’s a fight. I don’t have the energy for that. I sure try, though.

All in all, I’m elated about remission, I look forward to PT,  I’m nervous about rads, I’m dreading menopause symptoms, and I am eagerly anticipating the day when I’m a functioning part of our household again!