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.

Putting the ‘Rad’ in Radiation

Husband Reporter back again. We hope the holidays have been lovely and that the close of 2015 finds you pleased as punch (and/or Judy) with the year past and excited about the year ahead.

Today was the last day of radiation. Karyn has gone through ten sessions (two weeks). Despite being a third as many treatments as she had the first go-around in 2012, they carried two-thirds the radiation dosage. That’s a lot of radiation power in a short period and, if you’re thinking it sounds like a whallopin’-good-time-of-a-way to spend your next Holiday break, let me dissuade you from setting up those appointments.

While Karyn has exhibited exactly the sort of tenacity you’ve come to know, love and even expect, zapping your brain with radiation on purpose is no walk in the park. Increasing fatigue and persistent headaches have been punctuated with migraines. Dr. Santa Claus also brought a seizure on Christmas Eve (that was not on anyone’s wish list). Karyn’s speech has gotten worse* and, while we were told to expect that, it doesn’t make it any easier or less frustrating.

Along with a significant increase in napping, Karyn’s ability to deal with noise and activity has decreased*. Again, that’s not surprising, but keeping the house quiet and calm is a challenge when kids are off from school and have access to Christmas cookies. (Actually, they’ve been really amazing through all of this.)

Radiation is the gift that keeps on giving, so it will take about three weeks before Karyn feels significantly better. They’ll do another MRI in about a month to see how well the treatments have worked. Given past performance, we expect the tumor to have its tail tucked between its legs, feeling like it picked a fight with the wrong brain.

We couldn’t have gotten through the last few weeks without the help, love and support of some awfully special people. I’d name them here but: A) They know who they are and how we feel about them; and B) Like vigilante superheroes and bass players, they aren’t the type to crave the spotlight. To them, we say “thank you” and “we love you” until both get downright annoying.

Here’s to a great 2016!

* – These should be temporary effects of radiation.

Radioactive Beast

Husband reporter here. Many of you have asked for an update. You care and that means the world. My original intent was to act as Karyn’s ghost writer and provide an update in her voice, which she would then edit and approve. Yet, despite being married to her for a great many/many great years, I am neither her nor a good enough writer to pretend to be. You’d see through any façade I attempted. Trust me.
The most recent MRI, which was pushed out to six weeks after the last  showed more tumor growth. The beast, as Karyn calls it, is back and it’s getting bigger. It’s time to do something. Again.
We talked with her neuro-oncologist a few times about various options for treatment, and another round of radiation is the best of them. Radiation is not without risks, but Karyn’s doctors feel her brain and body will tolerate it well. And, doing nothing would be worse.
Deciding this is nothing to wait on, Karyn elected to start ASAP and has her first of 10 radiation sessions today. Taking a day off for Christmas (gee, thanks), that means the last session would be Wednesday, Dec. 30.
Additional conversations with the neuro-oncologist and radiologist have us more positive than we already were. Re-radiation (second time around) does not tend to create damage to the brain, and odds are good that tumor growth will be stopped or that it will shrink. It’s not a cure (still waiting on one of those), but means more time.
“How much more time?” I can hear you asking. The answers we got are all based on averages and statistics (your mileage may vary). But, consider how well Karyn has responded to previous treatments. Factor in her determination. Her strength. Her unequivocal badassary. Her network of loving and supportive friends and family (you). That all adds up to “mileage.”
So, here we go. Again. We appreciate your positivity, support and love. It’s produced miraculous results thus far.

Progress Report: 11-1-15

A little late, I know.

I had a follow up MRI on the 14th. As expected, the good news was too good. I guess that’s ‘as expected’ from me, really. There is some follow up growth. Not terrible growth, but some growth.

The doctor decided to take me off the Temodar – ‘to save my bone marrow’ – but continue the Avistan with a follow up MRI in 5 weeks. That takes me from every 3 months to every 5 weeks.

We did have another National Brain Tumor Society walk again this year. We were the number one fundraiser for the third year in a row. Woo Hoo! Thank you to all of you who donated to our cause. It means a lot to help this organization reach their goals.

I did make some new friends this year. Josh, who I met through our sons playing soccer together, is writing his own blog at oligojourney.blogspot.com. You should go check it out to see what someone else fighting a brain tumor is going through.

I had a few setbacks – explained, I’m sure – with my progress. I’ve had a couple of fainting spells when I was fighting a nasty, aweful migraine. I’m sure it was due to the fact that I hadn’t eaten like normal and it was due to head rushes – bad head rushes. I also had a fall on my way into the Testarossa winery. I’m sure that was a slip and fall due to stepping off the edge of the sidewalk – where there was a lip – and just not being able to catch myself. I’ve also had a few talking misdemeanors (like that…misdemeanors) where I’m thinking one thing and saying something completely different. I’ve become more sensitive to sound. I’m sure I’m looking for everything to tell me what’s happening in my brain isn’t more tumor growth. I’m not sure that’s working very well.

So, to continue with the Avistan, minus the Temodar, with another MRI in 5 (well, now 3) weeks. There have been some minor changes, but I’m hoping they’re minimum.

 

 

 

Chemo Experience 101

Just coming out of my latest chemo experience, I thought I’d share a little about what I went through on the last few days (3-7, by my last account). The last time I mentioned it, I was beyond day 7 and I felt super awesome! I’m a liar. It sucks.

I was nauseous the entire time (days 3-7 were worst). Smells were awful, I could barely enter the kitchen. My kids were fantastic, but ended up watching more TV than they do in a ‘normal’ month. I ate because I had to so I didn’t throw up. Vitamin water is REALLY hard to open without the assistance of 2 smaller children taking turns after my initial, unsuccessful attempt. I was exhausted and needed to nap, no debating.

Maybe this time was different from most because I traveled, I stayed up until midnight on day 3-4 (Taylor Swift concert with 3 kids – lots of bright, flashing lights, light rail experience both ways), I had to get up at o’dark thirty to get to an Avistan infusion on day 6, I was finishing my lady time (TMI, I know). But it all worked together to drive my chemo experience into the deep dark underground of hell.

I know there are people who can do this without skipping a beat. One of my daughter’s teachers is fighting breast cancer and stated, ‘I get my infusions on Tuesday, so I might be tired the rest of the week.’ WHAT?! I have 7 days of hell each month and I complain. I’m a wimp. I’m alive, but a wimp. I’m a stay-at-home mom who’s a wimp. She’s a working TEACHER and she’s got balls. I bow to her strength and perseverance in light of what she’s fighting with amazing courage and ballage. And she’ll likely lose her hair.

So, I’ll complain in my wimpiness and then I’ll move on.

Moving on now.

Progress Report: 7-29-15

I had an MRI last Wednesday to see how my brain was progressing after 3 Avastin infusions and 2 rounds of Chemo.

We honestly didn’t expect a whole lot. Given my challenges in the last few months, we expected some minor improvement if anything. Realism.

I went in for my MRI at the unreasonable hour of 7am. It was early enough to impose an MRI nap, which was nice. I had to convince the techs that this was NOT my first MRI, I knew what to do and how to prepare for the experience. I should make a t-shirt that says ‘This is NOT my first MRI’ so they know.

My appointment with my neuro-oncologist was at 11:00, giving me plenty of time to read and overhear a conversation someone was having with a friend about the importance of paying child support for the sake of your future relationships with your kids. I wasn’t eaves dropping, he talked quite loudly close to where I was reading.

When my appointment came around, the nurse practitioner came in and announced that she couldn’t wait to show us my MRI. This is weird because she doesn’t normally do this, but she was grinning ear to ear, so either it was good news or some alien had developed in my brain hole.

Turns out my results have been pretty spectacular. The neuro-oncologist was impressed, the NP was impressed, we were impressed (mostly because they were). Everyone was impressed. We even celebrated with our neighbors and family somehow when we got home.

The thing about getting good news like this is that it sends you into an upward spiral, putting you into a position where you wait for the next piece of bad news. Think roller coaster emotions. My husband and I discussed the phenomenon of depression that follows the good news shock. Seems ridiculous, but it exists. Its like waiting for ‘when the next shoe will drop’. We don’t mis-appreciate this good news, don’t get me wrong, I think the mixed emotions are just a part of the roller coaster effects of fighting a typically terminal brain tumor. After the last few months of ups and downs, I think the unexpected feelings are natural.

I’ll wait until my next MRI to feel truly impressed. Optimism.

New And Old Drugs

New drugs + old drugs = super awesome fun time!

New drugs = Avastin
This one requires a blood test prior to starting. And a pee test.
This one requires a visit to the infusion center. Most people there seem sicker than me.
This one requires waiting…and waiting…and waiting for my drug to arrive.
This one requires multiple needle sticks – unless I get a good nurse. I REFUSE to get a port until they give me no options.
This drug, so far, has had no ill effects.

I heard some horror stories with Avastin. People getting more sick (or is it sicker?) People having bad allergic reactions. People growing extra limbs. OK, not that last one.

I’ve only had 2 infusion treatments. I have one next week with an MRI the day after. We’ll see how it all goes. Platelets stay strong!

Old drugs = Temodar
This one I’ve done before – hence the ‘old drugs’
My memories are a little foggy, so it’s hard to remember what happened after radiation was done…cuz that made me feel like I’d been hit by a truck.
I know it makes me feel nauseous and tired – especially by day 3 to day 7 (yes, two days post treatment)
I did treatment on vacation last time and I did it on vacation this time. Hurrah!
Zofran is lovely. A little anti-nauseau medication is good. Very, very good.

I responded well to this old one before, so we’re hoping that it happens again.

So, there’s my update on new and old drugs. Unfortunately, they are likely the last options I’ve got available. So fingers crossed that they give me a few more good years.

Essentially, one doctor told me I was preparing for the end. My other doctor told me I had a good fight ahead of me. I’ll believe my second doctor, thank you very much. New drugs, old drugs…whatever he suggests, I’ll do it. It worked beyond expectations last time, maybe it’ll work again. Maybe there will be new trials and drugs that become available during my lifetime. You never know!

 

 

I’m Baaack!!

So, I’ve been gone…having brain surgery, some dreaded follow up brain surgery, taking some extreme measures to make this thing disappear…and so on.

I really have to thank my equally verbose husband for keeping you all informed about my information when I couldn’t keep you informed about my information.

Thank you for all of your kind thoughts, good prayers, and general well wishes. Keep them coming, I’m not out of this yet – new drugs, new tests, new experiences… They have been working so far, let’s not stop them just yet…or ever, really.

Some of you have asked what its like to have Broca’s Expressive Aphasia. Well, it sucks. When it returns, it sucks. Then you wait for it to return a third time…which would REALLY suck.

Survivors with Broca’s aphasia – with no loss of understanding (mostly):

  • Can have great difficulty forming complete sentences.
  • May get out some basic words to get their message across, but leave out words like “is” or “the.”
  • Often say something that doesn’t resemble a sentence.
  • Can have trouble understanding sentences.
  • Can make mistakes in following directions like “left, right, under, and after.”

(Thank you strokeassociation.org for that description)

I know a man who had a stroke. He’s got aphasia. He can’t make it go away. He would REALLY like to wish it away. I now know what it feels like to experience that guessing game of people wishing they could judge what you’re trying to say – which they’re usually wrong about. You can think it in your brain and no one can get it out of your mouth. It’s terrifying to think about losing your ability to speak, especially your ability to write. I wish I could give him a magical cure.

Now, some of you have asked how I developed this lovely pocket of mysterious marvel. There have been many theories, some of which include:

  • My brain is just wacky
  • My brain is just zany
  • My brain is just messed up because of the clinical trial I was on. (i.e. immunotherapy)
  • My brain is just messed up because of …

Take your pick…but let’s be clear, the immunotherapy trial is not one I regret in any way. The swelling that triggered my brain reply was caused by fluid build up in my cavity (ooh, cavity!). It wasn’t something that could be controlled. The Avastin has helped with the recovery – more than regular steroids. The Temodar showed to be something I’d respond to well. With the two combined, I now have more tests to take, more visits to make, and more driving needs to be met. So, it’s a small price to pay.

So, it’s on to Avastin and more Temodar. Let’s hope that keeps the beast away and gives me more time. In the mean time, I’ll continue to write about living with and fighting brain cancer.

 

Avastin, ASAP

Husband cub reporter (HubCub?) back with an update:

When I last wrote Karyn was out of surgery and talking. It was a glorious thing. She was speaking quite well for a few days, and then it began to get worse again. 

An MRI this morning (7 am. Ouch.) showed swelling that is likely causing her language issues. There is some accumulated fluid as well, but not nearly as much as when she had it drained in the last procedure. And, her euro-oncologist feels dealing with the inflammation will also help clear up the fluid. He says he’s seen it happen before.

The Doc recommended starting Avastin right away to deal with the swelling, and worked some serious magic to get Karyn an appointment today. It’s administered via infusion, and the first one goes in  v e r y   s l o w l y  to ensure there are no side effects. That means we’ve spent another day at the hospital.

Avastin not only deals with inflammation. It also attacks the tumor. So, this is good stuff to be on. It should help with the swelling and get Karyn talking again pretty quickly. She’ll also start Temodar (chemo) soon as part of a one-two punch that we hope puts the GBM against the ropes or, better yet, knocked out on the canvas. (Are boxing rings really made of canvas? Were they ever?)

If all this goes well, the next update you read just might be from Krunch3r Warrior Princess herself. Until then and long after, thank you for your love and support.

She Walks! She Talks!

“ICU? We don’t need no stinking ICU!”

Karyn did indeed go right into a “normal” recovery room after surgery. She’s now all set up and and her vitals look great. She’s resting and can eat a regular diet as soon as the post-anesthesia nausea settles down.

But the big news: She’s talking!

She’s tired, and just a little loopy thanks to pain meds, but able to say anything she wants. Like a boss. After about every fourth sentence she adds, “I can talk, I can talk!” The relief she feels fills the room.

She also got up and walked. It was just a few feet to the next door, but it was absolutely no problem. All this points to an early dismissal. I’m not sure how early, and we know from last time that being told you can go sometimes leads to a looooong wait before discharge paperwork is finished, but I remain hopeful.

I also remain grateful to all y’all for your love and support. Thank you, thank you!

-Todd