Wednesday, May 30, 2018

Confession: My attitude isn't always "how can I find the humor in this to make it bearable?". I suspect most of you knew that. But just wanted a guilt-free conscience going forward.

Case in Point: Bursting into tears on the way to the dollar store this evening.

I was going over in my head all that we had going on tomorrow.

Let's see...Thursday...May 31...May 31? Why does that sound super familiar?

Oh.

Tomorrow was the day all my follow-ups were scheduled for after my original surgery date of May 18th.

All three of them.

Breast Surgeon. Plastic Surgeon. Oncologist.

Three different campuses. But I didn't care. I'd be getting my drains removed, hopefully hearing how nicely I was starting to heal, and finding out whether or not I'd need chemo.

I would be closer to returning to work, returning to regular t-shirts pulled over my head, returning to...normal.

And the tears came.

Not a lot. Just a few. Because all of these appointments and milestones are now over a month away.

A month. I wiped my cheek. Honest to Pete, in the grand scheme of things, a month is not. that. long.

Heck, with the way time flies at this stage of my life, I'll be buying stocking stuffers next week. And Easter candy the week after.

I've heard the story of the parting of the Red Sea from the time I was toddling around the church nursery. But I never truly grasped what an awe inspiring miracle that would have been to behold until I saw the Ten Commandments on TV. However accurate, or inaccurate, that Hollywood portrayal was, it stuck in my head. And I could never understand how the Israelites who had just experienced that could grumble about such trivial things immediately afterwards? What on actual Earth? They had just walked through the sea on dry land. Thanks to an amazing God.

I still have the scratch piece of paper I scribbled notes on when my oncologist called to discuss the MRI of my head.

-need skull biopsy
-neurosurgeon
-might not be cancer
-if it is...Stage IV isolated metastatic disease

My subsequent BENIGN skull mass result was my Red Sea moment. And here I was just 5 days after receiving that wonderful, amazing, colossal answer to prayer, feeling sorry for myself for having to wait another month for my follow-up appointments.

Nope. I pulled myself up by my bootstraps. Turned into the dollar store parking lot. And went on with my evening.

My new lucky/unlucky number, depending on how you look at it, is 22.

3/22- Cancer diagnosis.

5/22- First surgery ever.

6/22- Rescheduled date for my second surgery ever.

On 7/22 I'll either win the lottery or get hit by a bus. It's anyone's guess.

Next year, of course, 22 will become my celebratory number.

That will be here before we know it.

Oh, and at some point, I'll probably change the lyrics to Taylor Swift's "22" to something related to my cancer journey. Come on, you all had to know that was coming...




Thursday, May 24, 2018

When I don't feel like writing, or drinking white chocolate mochas, you know things are bad.

Thankfully this morning, I sipped away on my cup of white chocolatey goodness in our backyard gazebo, and, well, you're reading this aren't you?

Telling people I needed a skull biopsy elicited quite a few cringes and replies of, "Yikes! How the heck do they do that?!"

And I would repeat what my neurosurgeon had told me (minus his super cool accent), "So, they'll just make a tiny incision back here and take out a little sample of bone to send off. Not a biggie."

Uhhh...that tiny incision required 13 staples in the back of my head. I feel like that's a semi-biggie. I was sent home with after care instructions for a craniotomy!

And I call "Bologna!"...or "Baloney!"...however you want to spell it, I call it. We know those hospital shows don't give a completely accurate picture of medical life. And I now know their depiction of the doctor/patient dialogue the day after surgery is f-a-k-e. The patients in the shows are well rested, sitting up comfortably in bed, able to carry on a perfectly normal conversation about how their surgery went, blah, blah, blah.

I was in a complete fog when the doctor and discharge nurses came in yesterday morning. I could barely hold my head up to look at them standing next to my bed. My glasses hurt and I had to wear them crooked so the stem wouldn't rub my incision, cocking my head to the side to keep them on while the nurses spouted off "do's" and "don't's", med directions, follow up appointments, etc. Finishing with, "Any questions?".

"Yeah. Huh?" I thought. I just wanted to curl up in a ball and have David roll me out to his truck. Which is pretty much what I did, thanks to the wheelchair they brought us.

Let's back up a bit, however, to before my surgery. Reese took a driving class last August and finally finished all her required driving hours last week for her restricted license. All we had to do was pop into the Driver's License place and trade her paperwork in for her license. "So, can you take me Tuesday?" she asked over the weekend.

"I am getting a HOLE drilled into my SKULL on Tuesday. So, no," I said.

"Oh. Then can you take me Wednesday?"

I still haven't answered her.

David. Bless him. He really is the best caretaker. He spoils me on a good day, and even more so on some of my worst ones. He's had to rearrange his travel schedule, calls, and meetings, on top of taking care of everything around the house and with the kids. And he does a better job than I do. Which doesn't make me jealous. At. All.

Now that I've sung his praises, I feel like it's ok to poke fun of him. Just a bit. He's always been super patient with the kids. But not so much so when it comes to waiting on things. Food at a restaurant, appointments starting on time, or surgery starting when it's scheduled. We sat in my little pre-op room for over 4 hours yesterday. Waiting. He still had some work to tend to, but when that was taken care of, he 'bout drove me bonkers.

He chatted it up with any doctor, nurse, tech, anesthetist who popped their head in. Being his usual, jokey self.

After one such encounter he turned to me and said, "Wow, he's not very jokey."

"He's a brain surgeon," I replied. "Not really a hallmark of their personality."

Next, he wondered aloud if he should have my surgeon take a look at his poison ivy while we were there. I contemplated calling security.

But I just shook my head and responded, "You're a mess."

"Am I? Because you're the one lying in that bed."

Touché.

We played pool and basketball against each other on our phones to pass the time a little. But he quit after I beat him at both.

"Last time I saw you in a hospital, you were having Tate," he reminisced.

"I know. It feels weird to be in a hospital without a baby."

"I'm sure there's one around here you could have," he suggested. Great. I wouldn't need to call security after all, they'd come on their own if someone overheard that comment.

The nurses finally descended upon us and said, "Ok, here we go. Time for good-bye hugs and kisses."

Why did they have to use the word "good-bye"? Cue the tears streaming down my face. Even if I had been ready to kick him out one minute prior. And even though it would only feel to me like I'd been away for 5 seconds when all was said and done. For my next surgery, I'm just going to have David say, "I'm going to the vending machine to get a Diet Coke" instead of "good-bye". I'll handle that much better.

When I settled into my room for the night, and David headed back home to run kids around, I reached up to push my hair out of my face and gasped, What were all those plastic wires doing hanging out of my head?! 

You guys! It was my hair!

Whatever they had to coat it with to ward off infection makes it disgustingly crunchy, cement like. Now, I don't consider myself to be a terribly vain person but when they said I couldn't wash it until Sunday, I wanted to assume the fetal position and cover my ears. I look like Medusa. Sorry, no photographic evidence. Because I'm pretty sure David would get his hands on it, and send it out as our Christmas card this year.

Or the kids would make bad hair day memes out of it for all eternity.

They're supportive like that.

Speaking of supportive, I don't take medication regularly. An Excedrin now and then is pretty much it. So these pain meds are doing a number on me. I went down to the kitchen last night with my water bottle and literally forgot how to use our ice machine/water spout on the fridge. David and the girls yelled "Stop!" before I spilled water all over the floor after pushing the wrong button twice. They then proceeded to double over with laughter.

David went to throw something away and said, "Who got into the kitchen trash?"

Drue chimed in, "That was Mom...she was trying to find the bathroom!" And they all doubled over once again.

I'm keeping notes on all the ways I've been wronged.

At least they balance it out by being sweet. Tate sent me to the hospital with some of his favorite squishies and a small stuffed animal to remember him by. Reese gathered all the little "pink" items she could from her room and left them for me with a note. Cue more tears.

They normally cover holes in the skull with titanium mesh, but my surgeon left mine open in case I did need radiation. David is already making quips about this new hole in my head, "Now I can say, 'It went in one ear...and out your hole'!". Good thing he can cook.

I gathered my crunchy, Medusa type locks into braids before leaving the hospital so I wouldn't turn all the staff into stone on my way out. Peace Out KU Med. Until we meet again.

Which could be sooner, rather than later, if my skull mass is a benign fibrous dysplasia, like my neurosurgeon is thinking. Now that he's seen it in all its glory. I should find out tomorrow or the first part of next week.

Again, THANK YOU for all your prayers. This was my first surgery ever. And it hasn't exactly been a walk in the park. When my meds start wearing off and I think, "I cannot do this" God gives me strength and I know is saying, "But I can". So I'm able to put one foot in front of the other.

And perhaps even relearn how to use our ice maker.







Saturday, May 12, 2018

Sooo...an impending double mastectomy doesn't seem so scary after I spent a week not knowing whether or not the cancer had spread to my brain (it hasn't!!).

But between a suspicious spot on my temporal bone lighting up on my scan, to when I got the results of my head/brain MRI (ohmygosh YES, I had to go in that tube of terror for a THIRD time!), I was in waiting limbo Hades. A special place reserved for those of us wondering which direction we'll head in a "Choose Your Own Adventure: Medical Edition". Except we're not the ones getting to choose.

When I first heard, "biopsy recommended" in March, God flipped my switch to preparation mode. Yes, the internet can freak you the heck out, but it has its helpful moments. I narrowed down the possible diagnoses I could be given if my results weren't benign. So when I actually got the call, I was 90% ready to hear it, 10% freaked out.

For my second biopsy, I knew it would either be "benign and continue on with our plan" or "malignant and double mastectomy". When it was the latter, I calmly said, "Ok, thanks for calling."

Next up, if my CT/bone scan showed the cancer had spread to an organ or nearby bone, we'd postpone surgery and start chemo. So I was mentally getting myself ready for that just in case. What I wasn't prepared for, was my oncologist's call 20 minutes after I left my bone scan, saying a suspicious spot lit up in my head that didn't make sense and they needed more detailed images, including brain images.

Nope. Nope. Nope. Nope. Nope. 

At my last appointment with my breast surgeon, she'd said, "You haven't really freaked out this entire time. And I've kind of been waiting for you to."

Well, that phone call from my oncologist did it. That's what tipped me over into semi-panic mode.
Because for the first time since this whole process began, I thought, "This could end badly." And I had to stop to catch my breath that evening on my walk, when the thought of not being here to see the kids as their adult selves hit me like a ton of bricks. Or not being here to make fun of David when his goatee goes completely silver. It's about 1/4 of the way there now, I like to point out to him frequently.

I toodled on over to the main KU Med campus this week for my MRI. The thought process amongst those in charge of the layout of that hospital had to have gone a little something like this:

"First, let's challenge all of our patients and see if they can find a parking space. Get them really frazzled. Next, let's take a super scary test...say, on their brain, and put that MRI machine all the way in the farthest corner of the basement. We'll make the basement extra creepy looking too. So it doesn't even really look like they're in a hospital anymore. More like they just stepped onto the set of Paranormal Investigations. Make sure there are absolutely no windows down there, lest they get a glimpse of the outside world to try and draw hope from the sun. Oh, and don't forget to charge them when they actually find their car again and exit the garage. They'll be so relieved to be getting out of there...they'll pay anything."

For my brain MRI, I only had to go halfway in the tube. This brought me joy. But then they put a little cage over my face, so I felt like Hannibal Lector ready to silence some lambs up in there.

My results show it has not spread to my brain. However, the spot on my skull does require a biopsy. I can think of 1,000,001 things I'd rather have done than that.

My apologies to those of you I may had conversations with this past week. I have a limited recollection of them. My mind was elsewhere. I hope I said something witty. Or at least something coherent.

Looks like I'll be adding a few more links to my surgery countdown chain. It was scheduled for next Friday, but has been put on hold while they figure out what is wrong with my head. David has been trying to figure this out for years, so it will be nice to have some answers.

I thought about having him post an update when I finally do have my surgery but here's how his updates usually go:

David: "Oh, hey, the So-and-Sos had their baby."

Me: "Awww...what'd they have?"

David: "A baby."

Me: "Boy or girl?"

David: "Yep."

Me: "Name? Weight?"

David: "I've told you all I know."

So I'm pretty sure his super helpful and informative post would be something along the lines of, "Kristen had her surgery."

For now, I'll stick to the updates.

And he can stick to counting his silver goatee hairs.



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