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 

Bring in the closer

Husband here again. We just got an update from the operating room that the main part of the surgery is finished and went well. Now they’re on to closing, which can take another hour. The update you’re looking for: “Karyn is doing fine,” says the messenger.   

So, while we’d appreciate something a little more detailed, we’ll take this as the happy, positive news it is.  

It’s back!

Karyn wrote the headline to this post but, with her permission, this is her husband here to update you on the latest developments. 

Since her last post there was another seizure and another MRI. The results of the latter showed the mass we had been tracking had grown significantly. “It’s time to make some decisions,” said her rockstar neuro-oncologist. After talking about options, Karyn decided to have a second surgery. 

Everything has moved along very quickly, and that surgery is happening today. Right now. It’s being performed by the same rockstar neurosurgeon that did her first procedure in October 2012. (Noticing a theme here? Lot’s of rock stars in Karyn’s corner.)

Karyn is displaying her regularly large amount of legendary badassary, and we expect the surgery to be another smashing success.

If I may take a liberty, I’d like to share just how much you, her EveryDayLeft community means to her. I’m sure “community” is too informal, and that she’d prefer “friends.” Through your comments on posts and your own writings (for those who have blogs), she has learned a lot, felt a lot of love and gained immeasurable support. 

Reading what you share, it’s clear she means a lot to you, too. I’ll do my best to keep you updated on her progress.

Seizures! The Latest Trend!

I don’t think I’ve ever written specifically about what its like to have a seizure. I figured I’d satisfy your curiosity, since I had yet another seizure on Monday night.

When I first started getting seizures, I had this long period between my first seizure (conscious, but with expressive aphasia) and the big generalized seizure, another way to say Grand Frickin’ Mal or tonic-clonic seizure.

Expressive aphasia is a very strange thing to experience. The first time, I could say some things, but not others. I knew what I wanted to say, but it wouldn’t come out of my mouth. Eventually, my mind was thinking one thing but my fingers were doing something else entirely. I was filling out paperwork at the ER and I wrote my maiden name twice. I knew it was wrong, but I couldn’t get my fingers to write my married name. I don’t remember anything after that. The doctors were concerned I was having a stroke, so they took me right in (remember that little trick). Apparently they asked me if I knew my husband. I nodded. They asked me to write his name. I wrote gibberish. Then I had a generalized seizure. That whole episode – expressive aphasia to generalized seizure probably took 2 hours or so.

A generalized (or Grand Mal or tonic-clonic) seizure is the kind that knocks you unconscious. You shake around for about a minute, clench your teeth – usually biting your tongue or your cheeks, and wake up slowly – ever so slowly – trying to get your thoughts back in order. For me, I’m thinking clearly again and chatting with the EMT normally about the time we’re 5 minutes or so away from the ER at Stanford.

One of my seizure episodes was a status epilepticus – a fancy way to say I had repeated seizures without regaining consciousness between each one. If these aren’t brought under control, it could lead to brain damage or death. Which is a scary wake up call. ‘The brain tumor may not kill you, but this acquired disorder might!’ After this episode my medicine was changed (adding Lamictal) and I got emergency meds (Ativan) to help stop the seizures from continuing past the first one.

Since that status epilepticus experience, my expressive aphasia period (also a seizure, in case you missed that the first time) has gotten shorter and shorter. I now have a little fuzzy moment where I feel like a conversation is on repeat, my vision goes kind of wonky (the official term) and then I’m out cold. Not enough time for me to get Ativan in my own mouth.

I went for nearly a year and a half without a seizure of any kind. That record was broken in February and once more again on Monday. Ativan (placed in my mouth by my husband) did what it was supposed to do. The ER doctors (consulting with the neurologists) increased my medicine again – taking into account when I’m having my seizures (right around dinner time). They’re calling them break through seizures, not progression, so that’s good…I think. No one wants to leave me alone and frankly I can’t blame them. I’m not sure how that’ll work in the long-term, but we’ll figure it out. Our dog is lovely, but I’m pretty sure he can’t get Ativan in my mouth OR call 911. No service dog skills at all.

My mom is here now helping to drive us about and run much-needed errands (especially needed after our youngest got a nasty stomach bug last night). Her help came at just the right time, but eventually she’ll need to go home.

Seizures come in many sizes, shapes, and colors. Some are minor and some are not so minor. I’ve talked to people who have many a day, but they’re not the kind that knock you unconscious. I know there are many who have generalized seizures on a daily basis, which has got to be a living hell. Some of them are related to tumors or brain damage as a result of tumors/surgery and some aren’t related at all. But I do know that seizures are stupid however they’re delivered to your doorstep.

If anyone is looking for a part-time job babysitting a grown woman , let me know.

Shout Out For The Boobs

One benefit of a primary brain tumor is that it won’t spread to other parts of your body. No Metastases! yeah.

That can’t be said for other types of cancer.

Breast cancer for example. Breast cancer can spread to lymph nodes, to the brain, to bones, etc… The blood/brain barrier creates a challenge, but it can be overcome. It’s treated with different chemotherapy than a primary tumor, but it can be treated.

We know much more about breast cancer thanks to research, development of new treatments, earlier detection, and increased awareness. If you’re not doing regular breast exams, you should be.

Because of the research, we know there’s a familial relationship to risk factors. There are gene mutations that can increase your risks of developing breast cancer (BRCA1 or BRCA2). There are rare syndromes (like Cowden’s Syndrome) that dramatically increases risk of breast cancer (by 85%) along with a long list of other cancers. (Read my friend’s blog about her own experience with Cowden’s: https://hopeforheather.wordpress.com

There has been a lot of press coverage recently (thanks Angelina Jolie-Pitt) about preventative double mastectomy for those with increased risks. I can imagine that even thinking about this decision is incredibly scary and difficult. A mastectomy is not an easy operation, a double mastectomy is doubly difficult. I understand why women make the decision, but I can only begin to understand the thoughts and conflicting emotions.

I have many (too many) friends who have been diagnosed with and undergone treatment for breast cancer. My husband’s grandmother was diagnosed and treated (including a mastectomy) in the 60’s. She lived to be 100 years old. Survival is possible and can sometimes be a legendary story.

I have a dear friend who has just made that pre-emptive decision to have a double mastectomy. She has two small children (younger than mine) and she doesn’t want to risk having to live with the fear of her cancer growing and spreading. The surgery is underestimated and under appreciated for how difficult it is to go through and recover from – not including the reconstructive process.

She is one of the kindest, most loving people I know. She taught both of my children in kindergarten. She taught my neighbors’ children. She always has a smile on her face and a hug to give. She’s approached her cancer with an amazing amount of humor and hope. She’s willing to do anything she can to be there for her children through their lives. Her positive attitude and enthusiasm for the chance to get ‘new boobs’ is genuinely amazing.

As a teacher, the most under appreciated job around, she’s got limited leave and resources to take the full doctor prescribed amount of time off  from work to recover. Another friend started a GoFundMe campaign to help support her family so she can take that needed extra time. Teaching kindergarteners is not a low stress, sedentary job. If you’d like to support a wonderful woman and family in their fight with cancer and survival, consider making a donation here: GoFundMe

 

 

 

Battle Wounds

There are doctor visits where I come away with wounds. Slightly less dramatic than an arterial line bruise that lasts weeks or a craniotomy scar, but that experience was a while ago. Wounds these days usually occur when my veins don’t cooperate. They might also include some emotional wounds, but those aren’t visible to the naked eye.

So, as I mentioned in my last post, I was going in for an MRI last Friday. I’ve gotten to the point where I can fill out the necessary pre-MRI form without reading the long list of questions about potential ailments and metal implants. I should have a stamp made for my drug allergies. When they ask if I’ve had previous scans, I say ‘too many to count’. When they ask the date of my last scan, I say ‘8 weeks ago’ and ‘8 weeks before that’. I’ve stopped trying to remember dates. Clearly I’m not a fan of having to fill out this form repeatedly. And I get to do it again in a month! Yippee!

My MRIs require contrast, so each one requires an IV. Sometimes the nurse gets lucky, sometimes not. This last one fell into the ‘sometimes not’ category. Two nurses, two failed attempts and one success sticking my tiny, scarred veins with a tube to insert some strange chemical into my veins while they’re scanning my brain. MRI rooms are ALWAYS freezing cold, warm blankets are a must – never turn the offer down. They also help keep you warm if you’re prone to napping during the scan. I am. I ask them to refrain from talking to me as each section of the scan experience is about to begin so that I can have a little snooze.

They tell me my results will be available in one to two business days. I say, ‘I’ll see them at 11:00 today. Thank you, have a great day. See you in a month.’ This isn’t my first time to the rodeo.

First bruise begins.

The waiting begins to see my neuro-oncologist. He’s usually over scheduled, rooms are overbooked, and he actually spends time with his patients if they need his time or he’s got news for them – usually bad news. I typically don’t mind waiting since I’ve been hearing nothing but good news for so long, but this time I was anxious. There have been signs of inflammation OR a tumor making its comeback. My MRIs are more frequent. We’ve discussed our approach of ‘waiting/monitoring’ since whatever it is has been growing slowly (GBMs are reported to double in size every two weeks) bringing the tumor regrowth theory into question. We’ve discussed our options in a distant, ‘don’t need to do anything now’ manner. But when something other than an empty spot and scarring shows up, the anxiety level raises slightly. This MRI showed that  questionable area growing…maybe. We don’t know what it is, BUT all of a sudden our discussions about potential next steps became more serious. More like we needed to consider which of those options we would like to pursue and what it would mean to my participation in the vaccine trial.

The invisible mental wound begins.

I went across the street for my vaccine shots. I have my vitals taken for the second time in the period of an hour. My temperature was the same, in case you were wondering. In these visits they have to draw blood for the study’s purposes. I don’t know, honestly, which test they’re running since I don’t get the results. When I get a nurse who knows my veins and their temperamental ways, it usually only takes one attempt. One and done. But this time, despite the success, my vein showed its displeasure.

Second bruise begins.

My vaccine shots involve a rotation between my right and left legs. This was my right leg’s turn. A circle is drawn with a Sharpie. No bunny ears or flower additions this time. My regular team of nurses and coordinators had the day off. Then four intradermal shots are injected around that boring, unadorned circle. They swell, turn pink and become itchy almost immediately. That lasts for a few days.

The vaccine ‘wound’ begins.

This has become such a regular MRI/vaccine day for me, that I’m largely unfazed by it all. This was slightly different given the wounds of the day. I’m hoping I can go back to unfazed on May 1st. But, I understand that given my survival thus far, I may be on borrowed time. Until I survive through the next steps, whatever they may be. Then I’ll go back to being unfazed.

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Distraction vs. Focus

There are times when so much is going on that the feeling of being overwhelmed is overwhelming.

There is always too much to do and it feels like it all needs to be done NOW. And when you feel overwhelmed, somehow you find more and more things to add to the list.

There are times when so many overwhelming thoughts are flowing through your head that they take over the necessary thoughts of your everyday life.

There are times when overwhelming knowledge of the state of our world creates a level of panic and critical sense of responsibility that is almost crippling.

When you have a GBM – or a previous (?) GBM – it’s hard to believe that some things can wait. Everything could change in a matter of a day. But prioritizing is a critical life skill, brain cancer or not. So I gave it a shot.

Stress and fear of its known effect on my seizure threshold is a very strong motivator to figure out how to prioritize thoughts, actions, and to-do lists. As a former ‘master’ multi-tasker, convincing myself that THIS thing trumps THAT thing is a new challenge for me. Knowing what needs to be done NOW vs. what can wait until ‘after’ requires deep breaths, positive self-talk, and good anxiety medicine.

Letting go of the need for perfection. Learning that going with the flow rather than trying to do more than anyone will expect or notice while they’re visiting and celebrating 50 years of marriage of two of their closest friends is ok. Asking for the help of family and friends to help manage the necessary details isn’t as hard as you’d expect when you accept that you can’t do it all without them.

The surprise outstanding permits on the house from 15 years ago that need to be resolved can’t be resolved today. I need to accept that it may take longer than is reasonable. We’re dealing with a government agency after all.

Getting quotes for a new fence can wait a few days – my temporary repair job is going to hold, even if it’s not beautiful.

Decluttering the house can wait a few days and honestly, will take weeks. We recently bought a paper shredder. I can’t believe we’ve gotten by without one up to this point. The stacks (and we’re BIG stackers) are slowly becoming smaller and smaller. I never expected shredding paper to be so satisfying.

The lawn – which is surprisingly still growing even though it hasn’t been watered in months – can wait to be mowed.

The spring garden doesn’t need to be planted today. Plants will still grow two weeks from now as well.

We’re doing a lot already to reduce our negative impact on the environment. We can do more. Even though I had to suppress my sense of panic and responsibility, I have to realize that our efforts to reduce our reliance on plastic, over-packaged products, and continue to… The list is long.

This is by no means a complete list of my thoughts, but it gives you an idea.

What I’ve learned in the last few weeks is that prioritizing that overwhelming list of ‘critical’ feelings and actions is hard, but ultimately worth every decision of THIS vs. THAT.

And Happy Anniversary Mom and Dad!

Another MRI on Friday… Not that it’s adding to my anxiety or anything.