After Cancer – Karen's Cancer Journey & Beyond

PTCD – Post Traumatic Cancer Disorder

Every fall, it’s time for my annual mammogram and blood tests, so in usual fashion, I procrastinated a couple months and finally made an appointment. This was my third mammogram since my cancer/chemo/ reconstruction/ reduction, so I really didn’t think much of it…at first.

I went in, did all the things (and I only have to do half a mammogram these days, so it’s only half-horrible now!) and went home – no problem. Then the call came. “We need you to come back in because there are some abnormalities we’re seeing and we need to take a second look.” Holy crap.

Now, I typically have to go back every single time I get a mammogram because I’ve had “dense tissue” in my breasts all my life, but this time the announcement rocked me to my core. I didn’t really talk about my fear to anybody because this was a normal thing for me – I was just going in for a second mammogram – same ol’ same ol’. But I had a hard time sleeping, I started crying spontaneously a couple times (this usually happens in the shower) and I had a hard time focusing. Clearly, I’m no longer very spiritually mature in the area of second mammograms!

I did the second mammogram – even tighter and squishier than the first – and went back to the waiting room while the technician (who was so sweet and made the process as easy as possible) spoke with the doctor. She came back a billion hours later to say they needed a couple more shots, so I endured a few more even-more-painful boob squishes and went back to the waiting room a third time with a cold sweat now breaking out, my anxiety on a bender. When she came back, she asked me to come into the room again and sit down (cue the shakes), where she told me…everything looked clear and I was free to go. Whaaaa? I just about melted into my chair.

Relieved, but still experiencing PTSD (or PTCD, as I’m terming it) symptoms – flashbacks, distress, fear, inability to focus, shaking, sweating, numbness – I drove home and collapsed into bed, crying like a baby.

Cancer is a horrible disease that ravages the body, but it’s also an insidious mind-fuck, which took me by surprise this time. So I’m working through my PTCD day by day, year by year. Will my mammograms bring flashbacks every year? I’m thinking maybe so…but I’ll be a little more prepared after this year’s experience.

The definition of vulnerability is uncertainty, risk, and emotional exposure. But vulnerability is not weakness; it’s our most accurate measure of courage. -Brene Brown, Braving the Wilderness

Christianese

I’m bilingual. Yep, I speak Evangelical and English. I learned Christian talk as my first language, so I can be one of the biggest offenders sometimes, but Christianese absolutely drives me bonkers these days! Yes, I drank the Koolaid, but now I’m wondering: Why can’t Christians just talk normal? Evangelical talk is so cold, insular, and frankly obnoxious.

When you really think about some of the things Christians say, it’s goofball insider talk, and none of it sounds like Jesus at all. It is designed to impress, stay superior, judge with a clear conscience, and it is rotten. And lazy. It’s a foolproof way to say to a non-Christianese speaker, “Yes, you are an outsider, and you do not fit in here.”

I am being challenged and held accountable to keep from getting caught up in the rhetoric of dated language and religious expression. Maybe the Christian community needs to hire a marketing firm to come up with new messaging that will appeal to today’s normal people.

Every time I hear Christianese, I make it a point to remind myself that I will not talk it. But sometimes it still dribbles out of my mouth when I least expect it. At times, I revert back to that Sunday School first language without even realizing. And I think I probably make Jesus facepalm a lot.

But we need to be real with ourselves and with the rest of the world. When there is loss, don’t quote scripture, or say it is all in God’s hands. Let yourself FEEL with that person, cry, yell, cuss if you need to. And that allows the other person to have the freedom to do the same.

Bad things happen, and I don’t believe that it is always because God willed it. We live in a messed-up world, and when bad things happen, I believe God hurts too. Because…Jesus wept when Lazarus died.

“All things work together for good” was said to me more times than I can keep track of during my ex-husband’s affairs, getting breast cancer, going through chemo. I do love Jesus, but I‘ve never wanted to punch so many Christians in the face.

Think about it – Jesus didn’t go around spouting off clichés. He washed feet, he fed the hungry, he hung out with prostitutes and tax collectors.

Here are some (not so) funny examples of what Christians often say and what non-churched folks hear or think:

“I’m saved.” / “Saved from what?”

“Are you a believer?” / “A believer in…climate change? UFOs?”

“We planted some seeds today” / “You started a garden?”

“Quiet Time” / “Is that like a time-out?”

“Lord, I lift Emily up to You” /

“Witness” and “Testimony” /

“Circumcise our hearts” Um…I don’t even know.

Or how about:

“I was backsliding so I nailed my sins to the cross and rededicated my life, and my faith was re-ignited and I was ushered into glory.” Bleh.

“Father God, we just bathe Julie in prayer and ask you to put a hedge of protection around her, so that the principalities of the air will not cause her to stumble. We pray she will humble herself and turn from her wicked ways so the Shekinah glory of God will fall and she will be edified by your anointing.” Lord help us!

And my personal stumbling block (oops, there’s one again): Overusing the word “just” when I pray. “Lord, we just come to you today…” “We just pray that…” and “We just ask…” WTF?

Why do we say:

“Fellowship” instead of “getting together”?

“Have a heart for” instead of “love”?

“You’ve been on my heart” instead of “I’ve been thinking about you”?

“Travel mercies” instead of “safe trip”?

“I covet your prayers” instead of “please pray for me”?

“Pouring into people” instead of “helping or loving people”?

“I have a check in my spirit with him” instead of “I can’t stand him”?

“A spirit of heaviness” instead of “depressed”?

“Are you in the Word?” instead of “Do you read the Bible?”?

“Of the flesh” instead of “Physical” (not spiritual)?

“Washed in the blood” instead of “forgiven by God”?

“Amen” instead of “yep”?

And Please Just Stop:

Talking about “God’s perfect plan” while ministering to someone about incurable brain cancer or a lost pregnancy? Hard pass.

Saying “Love the sinner, hate the sin” Just no. There’s no good alternative because it’s inherently flawed (and not in the Bible). This phrase is so short on love and long on judgment, I just (vomit face) when I hear it.

Just as Jesus warned the religious folks of his day to avoid vain repetitions in prayer, we need to stop using these vain repetitions in our speech. No more shallow, meaningless, tired words, please. All I hear now are clanging cymbals (oops, there’s another one escaping out of my mouth.) So whether you’re still speaking King James English from the 1600s or Televangelist phrases from the 1970s, let’s just all stop and talk normal.

F@#k You, Cancer

Warning: this post contains explicit language. If you are reading this aloud to your young children – why? If you would like the bleeped-out version, too bad.

Fuck you, Cancer.

You stole so much from me, and then you took my friend Carrie. Carrie Lynne Ladd passed away from peritoneal cancer on April 8, 2018. Carrie was Tina’s best friend, co-worker of 27 years, and one-quarter of our foursome who, along with Carrie’s partner Natalie, we vacationed with, tried new restaurants with, hung out with.

Carrie called me “Little Sprout.” ‘How’s it going, Little Sprout?’ ‘What are you doing today, Little Sprout?’ These are the words I hear still, every time I think about her. What I wouldn’t give to hear that again. Fuck you, cancer.

I will soon have lived longer than my friend who was 21 months older than me. This doesn’t make any sense. The universe is off course. Fuck you, cancer.

She was burned up at 1800 degrees – I don’t know why I know that, but hearing it hit me hard. I don’t like picturing it, but I do. Seeing her ashes hit me hard too. How can all the essence of one’s life be reduced to the contents of a hot chocolate canister? It’s not, of course. I know it’s just the physical shell in there, but it still hits me hard. Fuck you, cancer.

Okay, so all the Fuck Yous, right? Cancer is such an asshole!

But my question is WHY? Why does cancer get to kill so haphazardly? Is it just a big cosmic game of whack-a-mole where some escape and some don’t? Why can’t cancer take all the shitty people in the world? The child molesters, rapists and murderers? Why Carrie? It almost seems beyond random – as if the Universe chose her for being such an amazing person. Fuck you, cancer.

#FuckCancer – it’s a great hashtag, T-shirt design, even a nonprofit committed to working for early detection and prevention of cancer. All that is good and fine, and how I personally feel most of the time.

But let me tell you how Carrie lived with cancer. While there’s no denying Carrie was a fighter, she also had a peace and acceptance about the disease that grew, shrunk and grew again in her body. I learned from her that there is something peaceful about accepting one’s circumstances – about accepting that you are probably going to die from cancer. Though Carrie’s decision to stop chemo was a jolt to us, it was a logical and timely decision for her – why continue to put toxins in your body if they are not doing their job? So she accepted it with grace.

And acceptance doesn’t mean giving up. It just means she came to terms with her circumstances and recalculated … just as my GPS regularly does when I take a route other than the one initially intended. That decision brought Carrie some peace. It brought her new direction and focus. And that was the right choice for her. Because peace is less stressful and more sustainable than war, and love is more powerful than hate.

Every cancer patient has to find their own way through the labyrinth of emotions, medications, decisions, uncertainty, turmoil. Carrie and I took different paths – physically and emotionally. And I’m still angry at cancer. I still hate; I have not made peace.

Because, fuck you, cancer.

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!