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 

She’s Out

Well that was the quick surgery and surgeon report we were hoping for.

I just spoke with the doc who said they were able to remove the fluid by making a very small hole in the skull and inserting a needle to draw it out. The hole is about the diameter of a pencil eraser, and the incision was much smaller than the last one: about two inches long. 

More good news: The initial look at the fluid, of which there was a lot, says it’s clear with a little old blood in it. No new bleeding and no obvious sign of infection. It’s what’s called a seroma and it can happen after surgery where, for some reason, the body doesn’t reabsorb the clear blood plasma that seeps out when small blood vessels are ruptured during a procedure.

Because it’s not known why it wasn’t absorbed the first time, there’s a chance it could happen again. But, there’s also no reason to expect it will.

The surgeon said language could be better soon, or take time. It could even get worse before it gets better. Such are the mysteries of the human brain. I haven’t seen Karyn yet, so nothing to report on that front. 

But, unknowns aside, this is all very positive, happy stuff coming out of the OR. She may even skip the ICU and go straight to a recovery room. Smile, breathe and repeat.

Thanks and love, Todd

She’s In

After a night in the hospital including blood work, chest x-rays, regular vital sign checks and everythung else needed pre-surgery besides a few hours of sleep, Karyn went into the OR at 7:15 a.m.

The surgeon is exoecting it will be quicker and less invasive than her previous procedures. There’s even a chance of not removing the bone plate and instead sliding the needle in through a small space between that plate and the rest of the skull around it. If that can be done, and if there’s no infection found, this will be a walk in the park, neurosurgerly speaking.

I’ll keep you updated best I can, but it will likely be a few hours. Anesthesia alone takes a while, and I’m OK with the surgeon taking all the time he wants. 

Thanks and love, Todd (husband reporter)

Back Under the Knife, or Needle

Husband reporter back with a much overdue post. Many of you have been asking how Karyn is doing, and longing for an update on her progress. You’re nice and thoughtful like that. The plan was that she would update you herself in her normal eloquent fashion.

While waiting for her to tell you in her own words, she lost those words.

Post surgery, Karyn was doing amazingly well (well, not really “amazing” when you consider it’s Karyn we’re talking about). Then, as she was getting stronger, speaking became difficult. It was gradual, but she soon wasn’t able to say more than a couple words before those words simply wouldn’t come out. Unfortunately, this also made writing, typing and even reading difficult-to-impossible. 

The logical explanation, and the one we set out to treat, was this was caused by post-surgical inflammation. Karyn’s steroid (anti-inflmamatory) dose was increased and we all figured language faculties would quickly return to normal. They did not. 

Karyn needs to have another surgery. Her language issues are, according to yesterday’s MRI, being caused by a build up of undetermined fluid in the brain. The doctors say it’s unlikely that it’s blood, and it’s not consistent with tumor, which is good news. It could be fluid from an infection, and she’s not presenting with a fever or other symptoms because steroids and possibly her past vaccine trials have caused her immune system to respond “asymptomatically.” 

The plan is to insert a needle, remove as much of that fluid as they can and then test it. Regardless of what it is, it has to come out. 

We’ll go in later tonight for a pre-op meeting. Even though “draining fluid” sounds easy, it’s still surgery when you’re going into the skull and that requires anesthesia and all the trimmings. Surgery will be tomorrow, but the time isn’t yet set as she’s on a wait list.

As we wait, we’ll take whatever positive thoughts, love and support you have lying around.

Thanks and love, Todd

Home Again, Home Again, Jiggety-jig

That headline may be a bit premature but, to quote Paul Simon, Karyn is homeward bound. At 7 a.m. the neurosurgeon came in and said, “You look great. Let’s get you home.” The only delay since then has been (thankfully) not being a priority. It’s often good not to be the patient requiring the most urgent response. Discharge papers should be filed son and we’ll be on our merry way. 

For those keeping score, that means Karyn will have, for the second time, left the hospital in under two days after brain surgery [Hold for Applause].

There is certainly a lot of recovery time still needed, but it can be done with all the comforts, kids, and cuddly pets of home. Ziggy, our dog, is at least as excited as the kids are to see Karyn. (She is his favorite, and the rest of us don’t even come close. Can you blame him?)

So, that’s it from me, husband reporter. I feel honored to have held down everydayleft.com for a few days, keeping the community/friends updated on their Favorite Legendary Badass. Again, thank you for all the love and strength you provide. You not only make every day better; you ensure there are more better days. 

Signing off, Todd 

The ICU Hotel: A Good Place for a Bad Night’s Sleep

Husband reporter back at ya. Karyn’s night in the ICU went very well. She is, to the surprise of absolutely no one who knows her, crushing it. She’s speaking, moving all four limbs and the fingers & toes attached to them. Everything you want to see post-craniotomy. This morning the question, “How are you feeling?” was answered with, “Hungry.” A great sign. 

In fact, she’s doing so well that she’s scheduled to leave ICU as soon as a room opens up. That’s ideal for a few reasons, not the least of which being she will get better sleep. The ICU room’s revolving door of amazing nurses, doctors and more nurses all doing neuro checks or taking vitals means little of that rest they keep saying is so important. 

One nice anecdote to share: the nurse was very respectful of Karyn’s awesome “Sisu” tattoo when putting in her line (one of three). No damage done to the art work!

  

That’s a Wrap

Husband here, one more time:

The rockstar neurosurgeon just came out and said Karyn’s surgery is done. “Karyn did great,” was the good word, and he got everything out that he saw as abnormal tissue. It sounds like it went very well. 

Pathology’s initial assessment is that it is new tumor growth, rather than inflammation caused by Karyn’s vaccine trial. While that was always the more likely scenario, hearing it from the doctor stings. Again. Always. 

Still, there’s no reason to be anything but optimistic. Karyn has kept “the beast” at bay for two and half years. There are treatments she can use and new trials with encouraging results she can likely join. 

She’s now getting situated in ICU, and I should get to join her soon. If it takes too long I’m stealing a pair of scrubs, sneaking in and staying until they realize I’m kissing a patient. 

Eternally grateful for all your love and support, Todd