“What else can I do?”

We are surrounded by so many wonderful people who are sending love and light, which is needed more than anything else right now. We’re nearly overwhelmed in the best sense of the word by the generosity of spirit and abundance of care you are providing. Still, many are asking what else they can do.

If you’d like, you can give in Karyn’s honor to the National Brain Tumor Society, and consider joining our team as a fellow fundraiser. We’d love to have you, whether or not you can walk with us this September.

To donate and/or join, please click here.

Thanks and love,

Todd

Karyn

Of everything shared on this site — all the updates and life moments — this is the only post Karyn and I both knew would one day need to be written.

“One day” is today, and I don’t know how to write it.

The Bed Post

They really started with it on day one:

…and we will get you all the equipment you will need: A walker or wheel chair, a shower chair, hospital bed….

“Sounds great, but we won’t need the bed,” I said. “She’d prefer to sleep in our bed.”

A hospital bed would make things much easier on you, and more comfortable for her.

“And would be a nice thing to add to the bill going to insurance,” I cynically thought to myself, as though hospice professionals are paid on commission. “Actually, our bed is pretty great,” I said cheerily, “and she’s up all the time, so I think it’ll be fine.”

Of course, Mr. Wilder. Just know that it’s available whenever you decide.

Isn’t that funny? From the get-go they assumed we’d come around to realizing Karyn would be better off sleeping somewhere other than in our bed.

The next week we met with Karyn’s nurse. “I know you’ve resisted getting a bed brought in,” she started gently. “May I ask why?”

Resisted? Well, that seems loaded. “This is her bed. This is our bed. She’s comfortable. Besides, taking it away sends a message to the kids, to Karyn,” I rationalized. “I’m not saying we can’t get a hospital bed brought in. I just don’t think it’s necessary right now.”

And then it was necessary.

Not too far from 20 years ago, Karyn and I were newly married. We moved from our tiny apartment in a cut-up Victorian near SJSU to a small house in a lovely part of East San Jose. Our bed was our first “major” purchase. We saw it in the store and immediately fell in love with its minimal platform design, natural wood and utilitarian good looks. It cost many hundreds of dollars.

“Man, that’s a lot to spend on a bed,” I said.

“Yeah, but it will last a lifetime,” Karyn assured.

The bed came to that rented house and then to our first home: a smaller house in a less-lovely part of East San Jose. It then moved to the larger house we’ve had the good fortune of calling home for almost 10 years. In three different houses, surrounded by incrementally improving dressers and marginally better art choices, it has been the constant. Perfect: No upgrades needed. So sure, I suppose there was some resistance to taking it apart and pulling it out of our bedroom.

And yet, that’s how I spent an evening last week.

Our son wanted to help take the bed apart (he loves a project), and his enthusiasm kept me from coming apart. Together we carried the different pieces up the stairs to store them away. Our daughter helped navigate the mattress around corners and away from pictures on the walls. Dear neighbors brought over a twin mattress set and helped set it up on a metal frame so it could be right alongside Karyn’s new electric fancy-schmancy bed. There was talk of getting matching sheets so that together they still looked like one bed.

But when we were done, one look into our room made it obvious that it wasn’t one bed. It was her bed and my bed, and the side rails of hers meant we could only push the mattresses so close. The resulting gap felt like the Grand Canyon.

The electric bed is, without a doubt, the best thing for Karyn and all of us caring for her. There is truly no question about that, and it probably should have happened sooner. But I keep going back to what Karyn said. She said our bed would last a lifetime.

I don’t want her to be right.

 

Be Careful What You Wish For

We asked for help at home. We got hospice.

That sounds like we were duped. We weren’t. We just weren’t really prepared for the questions we’d be asked or the answers we’d give.

But here we are: Absolutely the right decision and not the one we wanted to make.

Need that optimism we’re for which we’re so well known? All research shows the earlier people go on hospice the longer they live. The term “hospice” carries an undeniable stigma but the discipline has changed dramatically over the years.

Or, said another way, this ain’t your daddy’s hospice. It’s Karyn’s. And, while it’s turning our house a bit upside down, we plan on living with it for a long time.

 

 

Iron Nan(a)

Many people remark on Karyn’s incredible strength. They talk about how amazing it is and how surprised they are that anyone could be so strong.

You know who isn’t surprised? Anyone who has met Karyn’s mom.

Mary Kantola, AKA WonderMom, AKA SuperNana.

I’d argue she’s from another world, except for the fact that she’s so damn human. Take that, Superman.

If you’re lucky enough to know her, you not only know what I’m talking about, you probably collect the comic books.

Hold onto those comics and keep them in good condition. They, like her, are priceless and only increasing in value.

 

 

A Luta Continua

 

There’s a common lexicon surrounding cancer that can come across as violent. People are said to be “battling” cancer. They “fight” the “enemy” within. They “wage war” against the beast. I’ve not always been 100% comfortable with this analogy but: A) I have always understood and respected it; and B) I don’t have cancer and should just keep those opinions to myself, thankyouverymuch. #PacifistOut

Lately I’ve come to embrace the metaphor. It lends itself to aggressive action verbs that better match what I see from healthcare practitioners, advocates, researchers, survivors and those who have fallen.

Karyn has attacked, combatted, deployed biological warfare and committed war crimes against glioblastoma multiforme. She’s sniped, ignored the Geneva Convention where abnormal cells are concerned and carpet bombed with high-energy radioactive waves. I know it sounds rough. War is Hell.

Despite this atrocious behavior, I’ve seen her infectious and indomitable spirit rally troops to join her cause and fight by her side. These warriors — an all-volunteer army, mind you — have seen a lot of action and continue signing up for tour after tour. General Karyn continues to inspire and never asks of her soldiers what she isn’t willing to do herself.

The battle wages on and Karyn lives to fight another day. For those asking how she is doing, that is the truest answer I can give.

Karyn is a badassary-clad, Warrior-Princess-strong, Bobby-DeNiro-on-a-bad-day-tough, questionable-battlefield-ethics-having super hero that gets her X-Men  mutant strength refueled by the love you continue to selfishly shower her with like she’s standing under Wailua Falls.

Yes, Karyn continues to fight. And I love a woman in a uniform.

 

Burying the lede

I know updates to EveryDayLeft are less than frequent and even less scheduled. This is my fault (husband reporter), and chiefly for two reasons:

1. Life — it won’t stop happening for even a minute; and

2. I really don’t want to speak for Karyn any more than necessary. She has always had a direct relationship with you wonderful folks and I don’t want to get in between you. What can I say? I’m just not the jealous type. Therefore, I’ve always felt a need to write as little as possible.

Still, when we hear from multiple people asking how Karyn is doing, and outright telling me it’s about damn time to write, I listen.

The latest for Karyn is that it’s been rough, to be honest. Headaches are have mercifully been less frequent (great news), but they do cluster around Avastin infusions. That’s ironic, considering Avastin is supposed to help with headaches that might be caused by intracranial pressure. A big issue of late is that energy has been low. Whereas a nasty headache would keep Karyn inside for much of the day, fatigue is now doing that. We walked around the block last weekend, and that was great, but it was the first long walk she’d taken in quite a while.

Dealing with background noise and visual stimuli has become more difficult, to the point where concentration on a conversation or task is easily broken by nearly anything in the environment: music; talking in another room; someone walking by; the dog scratching his ear; etc. It means trying to keep things quiet and still whenever possible. As you can imagine, the natural kinetic energy of two kids, a Jack Russell terrier and me (officially part of the problem) make “whenever possible” largely impossible.

On top of that, Karyn’s ability to communicate has been diminishing. For someone so articulate, witty and with such impressive writing skills, this is heartbreaking. She starts to say something, and the words get caught on their way out. In trying to push them out, the whole thought evaporates. Trying to write it down is no better. It’s like there’s massive construction on the communication pathways, and very few words can get passed the flagman before the sign gets turned to “Stop.”

This was the state of affairs leading into last week’s MRI, and that had us dreading the results. So — and this is me burying the lede — you can imagine our happy surprise when the doctor said the scan looked “really good.” He said it hadn’t changed much since the one in February, which means radiation did what we hoped it would: Tumor growth has, at least for now, stalled. Totes amazeballs, right?

It really is great news, but it left us without an explanation for the increase in symptoms. If the difficulties are caused by her radiation treatments (radiation is, after all, the gift that keeps on giving), they may be here for a while as Karyn’s brain heals. Her steroid dose also increased, and that slightly improved her language for a couple days, but it hasn’t lasted. “Frustrated” only begins to capture the feeling. Other “f” words also come to mind.

We’re staying in touch with her amazing team of doctors and wizards to discuss other options. Ritalin might be something that helps with fatigue and thus language. It’s always harder to communicate when exhausted. We are hopeful this is just another bump in a road that has already been pretty bumpy. Good thing Karyn is equipped with those heavy-duty badassery shocks.

Port of Call

I know “minor surgery” sounds like an oxymoron, but that’s what Karyn had today. For those who are surprised by this, so were we.

Talk about quick turn-around: She got a call to schedule it yesterday, and today Karyn got a port. (hello sailor).

A port is something a lot of patients who are frequently stuck with needles get “installed.” Rather than looking for a good vein time and time again, the port is used to administer intravenous medication, contrast dyes and more.

A port is also something Karyn has long resisted. Despite being a notoriously “hard stick” with small, uncooperative veins, she hasn’t wanted the visual marker of “cancer patient” that a port can give, even if she’s the only one who sees it. Two things changed her mind:

1) Karyn’s challenging veins have now reached a level of difficulty on par with Axel Rose. At some point, you just can’t deal with ‘em.

2) She learned ports can now be hidden subcutaneously. Holy bionic woman, Batman! A small lump under the skin is all she’ll have, and the needle can go right through that skin and into the port the same as a needle going into a vial of insulin.

Surgery to implant the port was fast and smooth, and Karyn is home now resting. It’s simply one more procedure through which Karyn has displayed her unparalleled degree of badassary.

Time Flu By

Husband reporter here with the latest on Karyn. It’s been a while since we we shared an update, so let me catch everyone up.

When we last left off, Karyn had finished radiation treatments and was feeling like garbage. That continued until about… well… this week. There were good moments here and there but extreme fatigue, difficulty speaking and an inability to deal with noise and activity ruled the day. Rather than get better, it actually got worse over time. We thought it was the flu, and there’s still a good possibility that she had that as well. (Holy insult to injury, Batman!) But, the overall health trend was down, not up, and we were at a loss as to why or what to do.

Recently, we found out it was probably because she got off steroids, which she was taking to manage inter-cranial swelling. Karyn took them for long enough that her body may have forgotten how to make its own (which bodies do naturally).

Oh what a difference a little Decadron makes!

Steroids have their own lousy side effects, but getting back on them this week has brought Karyn back in a big way. She’s sleeping less, eating more and much more herself. Her ability to put up with indoor flying of a remote-controlled helicopter by our newly nine-year-old son is damned impressive on its own! It’s great to have her back!

In the middle of all this was an MRI in early February. That showed little change from the one prior to radiation, which means Chernobyling her head helped prevent new growth. There’ll be another MRI in a month, and we are optimistic that it will look as good or better.

Now, Karyn will hurt me for this, but I’m going to do it anyway. (I can feel the cold stare and punch in the arm already… ow.)

Karyn has wondered at different times what this site means to people. She hasn’t said it in so many words, but the question that seems to come up from time to time is, “Why do people read this?”

So, I’d like to ask you to please share below* what you get from everydayleft? Why do you read the posts? What does this site mean to you?

I know what she, and we get from you: Love and support, and often when they’re needed most. Thank you.

* – If you’re reading this in your email, go to http://www.everydayleft.com and please add your thoughts there.

Hair Today…

Husband reporter here. I wanted to share a brief anecdote in an attempt to articulate the badassary that I live with on a daily basis.

On Karyn’s last day of radiation treatment* the nurse looked at her head and said, “Hey, your hair hasn’t changed much. Maybe that’s about all you’ll lose.”

Cut to last night: Karyn runs her hand through her hair and comes away with a fist full of the beautiful stuff. I see this happen, and watch her raise her hand to her head again and remove another large amount of hair. This happens repeatedly and the bathroom waste bin begins to fill with very pretty yet still unappetizing capellini.

“What a bummer. I’m sorry,” I say, feebly trying to convey that I appreciate how unbelievably crappy it is to have ONE MORE THING to deal with, when she’s already dealing with so much.

With the slightest of smiles Karyn answers, “It’s just hair,” and grabs 30-40 more strands.

That, my friends, is badassary in the face of adversary. And that is Karyn, through and through.

 
* – I love that they use the word “treatment.” It makes it sound more like a spa treatment… from the Worst. Spa. Ever.