Cancer Journey – Karen's Cancer Journey & Beyond

My Chemical Romance

I’m ready to break up with chemo for good. My last chemo treatment was three weeks ago, and I somehow had the idea that it would only take a couple weeks to feel normal again. I know, they say it takes about 6 months, but I’m an overachiever, so two weeks should be plenty! Not so much…so I’m hoping it will be a bit of therapy to complain a little. Here are some things I will most certainly NOT miss about my chemical romance:

BALDNESS

I can’t wait for my hair to grow back!! Maybe it will come in thick and curly this time instead of thin and wispy! I think I rock the hats pretty well, but I’m ready to go without them.

PAIN

Have I mentioned that I have had a headache ever since the first morning of chemo, and it’s never gone away? Sometimes it’s only a 1 or 2 on the pain scale, but sometimes it’s a “Shoot me in the head – it has to feel better than this!” I’d also heard about “bone pain” as a side effect, but didn’t start to feel it until about halfway through chemo (for that, I’m thankful!) and I still have it in my legs, especially at night.

NEUROPATHY

I miss the feeling of my toes and feet. I blissfully await the return of normal sensations. I’d even be happy to feel the stabbing of my toe at this point (um, no I wouldn’t). Got a pedicure yesterday and realized the “stains” I had thought to be on the outside of my toenails were actually on the inside –ugh.

CHEMO BRAIN

Oh crap, I forgot what I was going to say.

FATIGUE

I can’t wait to have my energy return. I’m ready to feel like doing things on the weekends again, instead of just using them as a “recovery period” from the week. I’m ready to WANT to go have dinner with friends instead of dragging myself out to do it despite my energy level. I’m ready for morning walks that don’t kill my neuropathy-ridden feet and leave me depleted of energy by 3pm. I’m ready to not have to take eight medicines every day to counteract the side effects of chemo. I want to go to Disneyland again…

Now if you’ll excuse me, I think I need a nap.

An Invasive Ductal Carcinoma Walks Into a Bar…

Sigh, I forget the rest…

So I haven’t written in nearly a month…not for lack of thought and feelings to express, but for lack of time and energy. I’ve got one more session (!) and I can’t tell you how ready I am to be done with this nasty chemo business!

Let me start by saying that being diagnosed with cancer was shocking, but embarking on the journey of Chemotherapy was even more disturbing. It’s uncharted waters and I had no idea what to expect or what I would go through, apart from what I heard, which, believe me, does NOT prepare you for diddly. Chemo (Taxol is my personal poison) strips you naked, knocks you down, and kicks you in the teeth.

Oh, Taxol seemed all friendly at first – It was like “nice to meet you. See? I’m all gentle. I won’t kick your ass. I’m just here to kill cancer.” (hug)

And I’m like – “Hey Taxol, it sure is nice to meet you. Thanks for being a cancer serial killer.” (another hug)

But then…Taxol, being the two-faced bastard that it is, starts doing things like drilling screws into my knee joints, and putting my toes in tiny vices. It hides in my bone marrow, pushing little pins out instead of in, like a voodoo doll on opposite day. It hides in my mouth, blocking my salivary glands so my tongue constantly feels like I’ve just eaten a too-green, chalky banana, and when I’m not looking, it stabs me with tiny, unseen weapons that cause multiple mouth sores and bleeding.

In my head, I know Taxol is busy killing potentially deadly cancer cells in my body, for which I’m thankful, but in my heart, I hate the jerk and can’t wait to be rid of it. (I’m whispering this, though, because Taxol is tricky. While I have my back turned, typing, it could sneak out of that seedy alley and beat the crap out of me again.)

Okay, enough about Taxol…some brighter thoughts:

I’ve named my IV stand Bertha – she can dance but refuses to twerk. I’ll miss her, but not terribly (sorry Bertha).

I’ve been asked, and therefore pondered the question, “How has this changed your life?” Well, aside from the obvious – I only have one boob (my boobs have told the story of my life – across a lifetime, they’ve held so many meanings: hope and fear, pride and embarrassment, life and death – and now one is gone), I think it has honestly made me appreciate life more.

That sounds kind of corny, I know, but I think I’m definitely less worried about how I look and more concerned about how I feel and interact with others. Has it made me seek out new and exciting adventures that I might not have pursued otherwise? You know, “Skydiving, Rocky Mountain climbing, going 2.7 seconds on a bull named Fu Manchu?” Well…

Skydiving has always been on my bucket list, exploring Europe is something I’ve always wanted to do, and changing the world is a pursuit I take on daily. So I will still do those things, maybe sooner rather than later. But mostly, having cancer has fostered and strengthened the “I will not be defeated” mindset that has always been there, but not always manifested. Cancer, you picked the wrong girl – you’re going down. Taxol, you’ve had your fun; finish up and hit the road.

What else? I guess time will tell. In the meantime, 11 down, 1 to go.

Disneyland on Chemo

We usually plan a big vacation right after school’s out for Tina, and this year our plan was to go to Italy the first two weeks in June. Then, cancer, mastectomies, and chemo (oh my!) joined the party and Italy was off the table. When we were invited to join the Ladd family for a long weekend at Disneyland (way back in April), it seemed like a decent substitute. Not Italy, by any stretch of the imagination, but certainly somewhere we could feel away from it all and experience a little “magic.”

Well…back home yesterday, just finished my eighth chemo session today, and I’m wiped out – not so sure Disneyland was the right choice.

We certainly had fun, though, so if I can just get through this workweek – muster enough energy to get to the weekend without any major mistakes – perhaps I won’t regret it.

For now, I’ll rehearse the positives:

Carrie and I got a “Disability Access Pass” that allowed us to skip the lines on the rides (along with up to 12 others in our party). Sometimes that literally meant getting directly on a ride from the exit side, and other times, it meant going into the Fast Pass line without having to have a Fast Pass. There were still time windows and waiting, like a Fast Pass, but at least we didn’t have to spend the time waiting in line (which was good for our limited energy level and compromised immunity).
We could see the fireworks from our room, so when we were too pooped to party by 9:30pm when the show started, we could turn on the music and narration on the TV and still experience the fireworks.
We had some firsts (not very common for Disney addicts)! We saw “Frozen” at the Hyperion after watching “Aladdin” and loving it every single time for years. Although not a Frozen Fanatic, I thought it was great! Also…I got queasy about a ride! Although I was fine on all the roller coasters, Tower of Terror, etc., Tow Mater’s Junkyard Jamboree made me want to hurl just looking at it! On the final day, though, I was feeling up to it, and it was actually quite fun. Luigi’s Rollickin’ Roadsters, a new ride in Cars Land, was also fun – adorable little cars (maybe Ferraris, Alfa Romeos and Fiats) with Pininfarina design logos on them – too cute!

Finally, I saw (or maybe just noticed, like when you’re pregnant and it seems like so many other people are pregnant!) tons of folks with the tell-tale bald head scarf wrap, or a homemade knit cap sticking out of their pocket indicating they were fellow chemo buddies. I want to go up to them and say something supportive. Something to let her know that they are a kick-ass cancer-fighting hero. And so am I – I speak chemo! But I couldn’t figure out a good opening line. “Excuse me, I notice you are bald and look like you may have cancer. May I offer a supportive ‘good job’ and a fist bump?” Yeah, no.

So what is the appropriate thing to do? Probably nothing. Perhaps just because I’ve been through cancer it doesn’t make it any of my business. But maybe we should have a secret handshake. Or a gang sign — maybe a hand in the shape of a “C” over your mastectomy (or other location) scar. Yo. Can we make that a thing?

Hair Today, Gone Tomorrow

It’s been so long! I’ve literally had so much going on at work (event planning on chemo – NOT recommended) and now have my kids visiting from Hawaii, that my “spare time” is nonexistent. But I’m doing okay – 7 down, 5 to go. Over halfway! I’m still experiencing only minimal symptoms like headaches, fatigue, and diarrhea, so I’m thankful it’s not any worse, but now…I’m losing my hair. Here’s an average morning’s loss nowadays –

Next week I’ll wear hats, and maybe even don a wig in the following weeks. My hair has been thinning for quite a while, but I’ve managed to style it so that it’s not super noticeable. But now my gray is coming through (and I can’t color it during chemo) as well as a few bald spots, so it’s time to let go of it and invest in a few head coverings.

But why can’t I lose my chin hairs too? Nope, still plucking those! How about my leg hairs? Nope, still doing the shave thing every other day – what’s the deal?

It’s. Only. Hair. But any of us who lived through the 80s and had that big hair, got perms every few weeks, knew the more hair, the better (right, Kathi Hunter?). Those of us moving into our forties knew that a hair color every few weeks was essential to covering our gray.

We spend hundreds of dollars on hair products and hundreds of hours each year on the hairs that adorn the top of our head and maintaining our vanity. Well, chemo has stripped my vanity for now. Stilettos, cleavage, and a bronze summer complexion are a bygone now.

Everything is a little bit harder, and takes a little bit longer –

Things don’t fit the same since my mastectomy, so choosing my outfits is complicated.

My head is tender, so shampooing, conditioning and styling my hair is a careful procedure now.

I have bumps and spots all over my face, so my makeup takes longer to conceal all this, and my eyebrows are also thinning, so I have to draw those in carefully.

I have to make exhaustive lists of things I need to do, ideas I have for everything from a birthday present for someone to what bills I need to pay when.

I’m directionally challenged anyway, but with chemo brain, I ALWAYS have to program my GPS before driving, even when I’m just headed home.

So…here I go into the final laps. I’m surrounded by loving friends and family, including my adorable grandson right now, so it’s hard to get down. Thanks to everyone for your continued support and prayers!

loren — Bedtime stories with grandson Loren

Reading This Might Give You Cancer

Seriously, it sounds like EVERYTHING gives you cancer. I’ve been reading about cancer prevention because of course I don’t want to have to go through this again, right? But I’d have to be the Bubble Boy to avoid everything you’re supposed to avoid.

Red #40 – my favorite. If I walk down the candy aisle at the store, what calls to me? Red licorice, Hot Tamales, and Cherry Sour Balls. Yep – cancer magnets.

I downloaded an app to check on beauty products’ ratings. My CoverGirl Tru Blend foundation got a 0 on a 10-scale. Yikes. So I got new makeup…

But the computer screen I’m currently staring into, the microwave I just used to heat up my dinner, the workout I missed last week, my electric blanket, and bacon, yes bacon, causes cancer. Actually, I think just living on the planet Earth causes cancer!

It’s easy to get overwhelmed at the myriad things in our environment that cause cancer, and truly, there’s no way to avoid them all! But, thanks in large part to my daughter’s shaming, we’ve been making healthy changes for quite a while now. We store leftovers and drink alkaline water out of glass containers instead of plastic; buy natural, organic and non-GMO for the most part; avoid chemicals whenever possible (which literally means switching ALL of our cleaning and personal/beauty products), and even trying to avoid EMFs now…

I realize these are first world problems, and I’m thankful to even have the option of doing chemo and being able to afford expensive natural, organic products (why do they cost so much more?). Here are some of my newest finds:

new finds — Some of my new healthy alternatives – CocoWhip is a fantastic topping for the chocolate pudding – great dessert. Simply Gum is my new fave, Ultima as an alternative to Gatorade/Poweraid, and YumEarth suckers are super tart and yummy.

Had my third chemo last Friday, and my dad went with me. Everything went well, and it was actually my best weekend yet – very few flu symptoms, and I got to celebrate Mother’s Day Saturday AND Sunday!

Brunch on Saturday with the Ladd family, church with Stace on Sunday, then my family came over for a barbecue on Sunday, including my brother Dave and his g/f Monica! It was all such a blessing to still be able to do all that since I’d prepared myself for the possibility I’d be in bed all weekend.

I seem to be losing more hair than normal, but you can’t really tell, and so far no barfing!

Thanks for all your thoughts and prayers!!

P.S. In preparation for more hair loss, I got a new ‘do – above.

Chemo Patients in Cars Getting Coffee

If you’re on Facebook, you probably saw that I got in an accident the day before my first chemo treatment – ugh. A dork ran a red light and I t-boned him on my way to my pre-chemo oncology appointment. Crap!!

The car was still driveable, so I was able to make it to the appointment and work, but then had to figure out ONE MORE THING! The car went into the shop, and I subsequently got two offers from friends to borrow their cars. The first day, I got to drive the Mini below:

and the next day, I was driving this Porsche Carrera:

Friends are great (thanks Mark & Carol)! And Tina says she will never again be okay with renting a Chevy Aveo, Hyundai Accent, or anything that goes weeeeeeee instead of vroom as you step on the gas, when we travel.

My second chemo session was Friday. Stace took me this time, and we watched Game of Thrones and two Vice episodes. The time flew by – love my son! Except I sent him to the snack frig for pudding and he came back with a box of Boost and some tropical jello – whaaaat?

If I’m going to lose my hair, they say it will start around the third or fourth week, so I’m thinking of getting my hair cut super short just in case. Still debating…

I was a little nauseous today, but still no puking, so that’s good. My pee stinks, I’m getting blotches on my face and I think I may have had my first hot flash last night – woo hoo – good times!

On a more positive note, I’m thinking I’ll sign up for a yoga class, I bought some earrings to cheer me up, and I pinned some new ideas to my “Gift Ideas” board on Pinterest if anyone wants to get me a present (just kidding, they’re ideas for Mother’s Day).

Two down…ten to go.

First Chemo Day

Well, Friday was my first chemo day. Here’s how it went:

Arrived at 8:45am and got hooked up – through a vein in the side of my forearm, so weird. First, a little saline, then some Pepcid, then Benadryl – all to counteract possible reactions. Finally, Taxol, to kill those m/f-ing cancer cells! I get a double-dose today, slowly at first to make sure I don’t have a reaction (which I don’t), then full-on. Though I don’t have any adverse reaction to the chemo, the Benadryl has given me the wiggles to the moon and back. I cannot stay still. I take laps around the chemo lab with my drip, I go to the bathroom at least 12 times. I cross and uncross my legs nonstop. I’m sure everyone there thought I was coming off heroin cold turkey. Nothing hurts; it’s not painful; I just wish they had a treadmill there!

When the Taxol is done, then they start the Herceptin – a double dose again. Time is dragging. They said to allow 4 hours, but it’s going on 5…ugh. We have snacks – almonds, fruit, animal crackers, yogurt raisins…that helps. It’s finally done, and we go home, still antsy. I take a half of an Ativan to calm down and then take a nap.

The weekend has been okay – mild flu-like symptoms – achiness, headache, chills, etc. but thankfully nothing too serious. I missed a BBQ, but made it to church. No hair fell out and no puking…living one moment at a time.

One down, eleven to go.

Thank You #2

I continue to be awed by the outpouring of love from everyone – from dozens of cards all over the house, to containers full of food in the refrigerator, to the plants that still survive!

-Tina (I can’t mention this enough) for taking such good care of me, even when I’m a bad patient. Thanks for making me all my favorite foods and keeping my body & spirit safe.
-Carol Davydova, Mama Ladd, & Robin Taylor for the delicious homemade food
-Carley Castellanos, Billie Kaye Tygart, Lezlie Duncan & Butch & Corky Morrow for the delicious “take-out” from all my favorite places
-Hallie & Lillie for getting me out for cocktails
-Natalie for all the delicious coffee drinks and the Friday morning walks
-Carrie and the rest of my cancer survivor group – Traci, Tina M, Lynley – for all your helpful advice and encouragement
-Mom, Dad, and Stace for attending the wonderfully entertaining “chemo class” with Tina and me
-My Kitchen Table group and The Table UMC for your support & care – see you tonight!
-My Goodwill family for the constant check-ins at work, and for a full paycheck even with my surgery time off and only working part-time for several days – what a blessing
-All the hugs, prayers, cards, email and messages that are still coming my way – I’m simply overwhelmed by the goodness that is out there!

F@%k Cancer!

Sorry for my language, but this is a journal, and that’s how I feel right now.

On Monday, we got word that my lymph node tested during surgery was negative, which (we thought) meant no chemo or radiation. But we met with the oncologist on Wednesday, who is recommending chemotherapy because I tested positive for HER2 (explained below for those who don’t speak Breast Cancer). It was like a sucker punch KO to us – completely unexpected and devastating.

About 1 of 5 breast cancers have too much of a growth-promoting protein called HER2 (yep, I’m just that lucky). Cancers that are HER2-positive tend to grow and spread more aggressively than other breast cancers. My original test came back equivocal, but the second test they ran came back positive.

I was officially diagnosed with stage 1 cancer, my tumor being 1.5 cm with no lymph node cancer cells present, normally not requiring radiation or chemo. But because of my HER2+ status, chemo is indicated.

The oncologist explained the case for chemo this way: The mastectomy and negative lymph node results lowered my chances of getting cancer again by 80%, the remaining 20% being the possibility of rogue cancer cells having escaped and are currently traversing my body. The presence of estrogen and HER2 both encourage these cells’ growth and proliferation, so Estrogen and HER2 blockers will bring the risk down to about 12%, and chemotherapy will further reduce it down to about 5%. It’s inexact, obviously, but those are the estimates.

Dr. Hui, my oncologist, gave us a choice of 2 different chemo regimens, one (Taxol/Herceptin) more tolerable but less effective for aggressive cancers, and the other (TCH) the full chemo package with all side effects included. Tough choice! Being my naturally curious self, I have asked her a bunch of questions about both, so we are awaiting her answers as she researches my particular case in relation to recent clinical trials and in conference with the other oncologists in her office.

Probably not the last sucker punch we’re in for…I had no idea how much emotional weight was carried in my bra!

Here we go…

Fighting Cancer in Style

Tina decided to take a little outing while I was napping yesterday and went to the mall.

Here’s what she came back with:

I think it is because I’m such a good patient.

In any case, I definitely believe I should fight cancer in style. Which means new shoes.

I was wearing them around the house with my sweats hiked up to my knees when Marisa dropped by. We had a good laugh.

I think I can give cancer a good butt-kicking in these, don’t you?