Karen's Cancer Journey & Beyond

The Journey Continues

My life post-cancer

So to recap the last year, here’s what has happened:

In October 2016, we had the unforgettable experience of taking grandson Loren to Disneyland. We love going as adults, but there’s something magical about going with a child!

November 2016, I turned 50. Tina, against her better judgment, threw me an amazing party (with lots of help!) to celebrate. It was a unique experience for me to see all my worlds come together – I had my family there, my friends from Sacramento, my colleagues from work, my Vistage confidants, my church family (including both Pastors) and my neighbors all together in one house.

In December, we spent a beautiful white Christmas with my family in Lake Tahoe.

In January, I traveled to Ashland for the birth of my second grandbaby. When I got the call that Brie was in active labor, I hopped in my car and sped up I5 as fast as I could…only to wait a week while she went in and out of labor, and I finally went home because I needed to get back to work!

Then in February, Genevieve Oreta Brown made her entrance.

After needing to borrow cars to go to Tahoe and Ashland in the winter weather, I traded in my cute little (impractical) Miata for an all-wheel-drive, automatic transmission (because I would not be able to use my left arm for a while after reconstruction) Audi A4 with enough room in the back seat for 2 car seats.

Breast reconstruction: Diep Flap Procedure (more on this in my previous post):

In April, we visited the grandbabies again for Easter:

Loren helped make Easter cookies!

Genevieve!

I got permission from my surgeon to be able to hold Genevieve if I sat down and someone handed her to me!

In May, we went to Disneyland (our happy place) again:

In June, we got Loren for a whole week!

Then (still in June) I had my right breast reduction (so that they would match).

In July, we went to Sisters, OR to spend time with the family at my brother’s vacation home – it was fabulous!

And I went to the Gray Family Reunion in North Carolina (for the first time)!

In August and September, we helped move my parents and Mama Ladd into new homes – 7 weekends in a row! Thankfully, there was lots of help, including these two:

Then in October, we went to Ashland for Loren’s 6th birthday (and Stace’s 31st).

Which brings us to November 2017. More to come soon!

A Year Later…

After a year’s hiatus from blogging about my cancer journey, I’m baaaack!

Maybe I got too busy to keep writing. Maybe I ran out of things to write about. Maybe I just wanted to put it all behind me and move on.

Whatever the reason, I’ve got the writing bug again, so I decided to create a real blog – woo!

I entered my past blogs (from CaringBridge) backdated in their chronological order. Many people wrote beautiful and uplifting comments (and I’m a Words of Affirmation gal!) that I couldn’t carry over, so feel free to repost them! 🙂

One thing that I think motivated me to finally do this is that I experience a significant milestone yesterday – I was able to donate platelets once again. I had to wait for at least a year post-chemo to donate, and I was worried that my platelet count wouldn’t be high enough to donate, but I did it! My iron count was 13.4, and I gave a triple donation!!

They were so sweet at Bloodsource too – they brought me balloons that said “Welcome Back” and passed out Oreos to everyone to celebrate!

I used to give whole blood every couple months until my Father-in-Law, Clarence Gray, became dependent on platelets to ward off the effects of leukemia in his last years. Platelets (and God) were literally keeping him alive.

So I decided to try giving platelets instead of blood, and discovered it had many benefits:

I wasn’t as tired after donating
It felt like it was a tribute to Tina’s beloved dad
Turns out, I’m a platelet rock star, with an exceptionally high count and able to give triple donations!

My foray back into platelet donation was a big milestone for me and got me reflecting on my journey. So here I am back, wanting to share more.

I may not write about cancer all the time now, but I definitely draw inspiration from my journey, which affects just about everything I do in the aftermath.

Why DIEP Flap Procedure?

Before the mastectomy, I just wanted the cancer gone. I was more than willing to sacrifice a breast – a breast that was killing me – to be cancer-free. No, I don’t want to even think about reconstruction right now. I’m nearly 50 years old, and my life is much more important to me than a breast. Just get rid of it!

And truly, after my surgery, there was a huge sense of relief that the cancer had been removed. Recovery and figuring out how to wear a prosthesis consumed my time, energy and emotions.

But then I began to feel lopsided (literally and figuratively). My prosthesis was large, heavy and uncomfortable. It poked out of my bra and showed often if I wore lower cut shirts – embarrassing!

So I came to the decision to have reconstructive surgery.

It is hard for the general public to understand this when you are a “hidden amputee.” I realize there is no comparison to those who have lost limbs. But we frequently look at the visible loss of a limb of an amputee and think to ourselves that it took surgery and physical therapy to regain balance and getting used to the loss of their body part. Only a mastectomy patient would truly understand what I’m speaking of when I talk about the loss of symmetry and what it does to your sense of physical balance.

After researching all my options, I chose the DIEP flap option (“Deep Inferior Epigastric Perforator”) over implants and other procedures for several reasons:

The desire for a natural looking and feeling breast

The new breasts are warm, they are soft and they are truly a part of you. The fact that blood vessels are disconnected from one part of the body and reconnected to the breast area lost to disease again, is a feeling that only the patient can truly appreciate the benefit of. You feel “huggable” again. You don’t have any foreign objects in your body.

No need for additional surgery down the road

Implants will typically need to be replaced after about 10 years or so. The possibility of a rupture or leak scared me. And having to deal with this again in my 60s, 70s and beyond had no appeal to me! Natural tissue reconstruction is permanent.

Tummy tuck bonus

Take my 49-year-old muffin top and make it into a great breast? SOLD!

I still have enough “fluff” on the rest of my body to make my tummy tuck pretty camouflaged, but my pants DO fit better!

The main criteria for being eligible for DIEP Flap? Plenty of abdominal “tissue” – check!

The procedure was actually much more involved than the mastectomy. I had an amazing plastic surgeon – Dr. Karly Kaplan at Kaiser – who I give all the credit for an amazing procedure that resulted in a beautiful C/D breast!

I was in surgery for nearly 8 hours while Dr. Kaplan meticulously performed microscopic surgery to remove and reattach the flap to the recipient vessels on my chest wall. An incision was made along my bikini line, then skin, soft tissue, and tiny feeding blood vessels were removed. The blood vessels were matched to supplying vessels at the mastectomy site and reattached under a microscope. Tissue is then transformed into a new breast mound. Oh, and my belly button was moved up by about 3 inches. Pretty incredible!

I spent one night in ICU following the surgery and 4 more days in the hospital before going home. The sunshine and fresh air were divine after being in a hospital bed for five days. Drains at both incision sites, compression girdle, walking around like a comma to protect my abdominal incision, sleeping in a sitting position, and dry shampoo for days…ugh.

I continue to be numb at the abdominal scar site where they take the tummy tissue to form the new breast. This is a very large scar, hip bone to hip bone, and many layers of fascia, both deep and superficial, have been cut through to reach the deep inferior epigastric perforator. You can still see all the scars on my breasts and abdomen, but they have faded dramatically.

Lingering issues?

My left (reconstructed) breast is actually larger and perkier than my right side (I had a reduction on my right side to match the reconstructed left, and while it’s pretty close, there’s a definite difference – especially noticeable in a bathing suit).
I opted for nipple reconstruction on my fake right breast, but still need to finish the tattooing process so it looks natural.

If any of my readers have also had the DIEP Flap procedure, I’d love to hear from you!

No Hair, Don’t Care

So I’m almost 3 months post-chemo, and feeling pretty close to back to normal. Whatever that was. I still get tired after a long day and forget lots of things, but I can no longer remember if that’s a chemo-recovery thing or an old-person thing. Probably a bit of both.

When I lost my hair to chemo this year, I swore I’d never complain about a bad hair day again. Not wanting to deal with complicated scarves or hot wigs in the summertime, I opted to go with hats during my dog days of chemo.

Mostly, those who didn’t know about the cancer along with the in-the-know-crowd simply said “I like your hat!” or “Hats look great on you!” Which was much better than pitying looks from strangers at the supermarket, or the awkward moment of realization for those folks I hadn’t seen in a while.

“Thanks,” I’d tell them. “I’m trying something a little different.” I didn’t mention that the different part was trying to cover up my thinning, mangy hair tufts and bald spots.

After chemo, when my hair (peach fuzz, really) started growing back, I had to make a decision to continue wearing the hats or embrace my inner pixie. I opted for the latter, and while it was fun at first telling people who asked about it that I lost a bet or decided to become French, I eventually just announced it was my chemo ‘do.

Now, you can see from my pre-chemo photo below that I normally sport longer hair, for the most part, and I don’t think I’ve had it this short since I was two, but I’m getting used to it!

Although I was secretly hoping it would grow back thick and curly, it’s coming back in my normal mousey brown, and my normal straighter-and-limper-than-linguine style. And growing at the speed of Congress. No “chemo curls” for me – oh well.

The upside is that one bottle of shampoo has last me over a month, and it takes about 5 minutes to style my hair in the morning! So who knows – I might just keep it!

Another upside: I’ve become a lot less fussy about life’s little disappointments — and my body’s imperfections — since the cancer diagnosis. Like my hair, I’ve grown some, too.

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.