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.

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.

 

 

 

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.

 

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.

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.

IMG_0378

20130606-194516.jpg

Thoughts on potential employment

As a follow up to my Existential Conflict self-pity extravaganza, I was giving some thought to any and all job prospects.

Jobs that would be completely out of the question:
Driver – Truck, Taxi, School Bus, Delivery….you get the idea. While I’m completely capable of driving and have been approved by the respectable government organization which makes such decisions, I’m doubtful that any business would hire me to drive.

Strobe light tester – flashy lights and seizures have a long history of incompatibility

Surgeon – I’m not skilled for this role in any way, shape, or form

Mathematishian – I can’t even spell it right…clearly I’m not qualified for complex number problem solving. Also, I like words WAY more than numbers. Which is ironic since I spelled mathmatishian wrong…again.

Rave DJ – 1. Loud, repetitive techno music 2. Afore mentioned strobe lights 3. My aversion to rooms full of young adults under the influence of mind-altering drugs with various forms of glow sticks and pacifiers.

My non-negotiable requirements for any job I might consider:
Nap time – Liberal policies on crawling into a comfy corner or business-provided cot to have a little shut eye when my body tells me its time to take a little break with my eyes closed

Flexible schedule – Not a boiler plate policy allowing me to work at home (though that would also be required as well), but a level of flexibility that would allow me to pick up my kids after school, take days off when the kids are off of school (including summers), attend my regular doctor appointments, and unlimited random days where the Nap Time clause is insufficient for my needs. My hours will need to be strictly limited to 9am to 12pm only.

Fragrance free workspace – Perfume and ‘fragrances for men’ are offensive to the nose, as are artificial smells like cinnamon candles, air fresheners, or unreasonably scented hair and beauty products. All fragrances must be pleasing and approved by ME.

Vegan, protein rich snacks – Blood sugar balancing nutrition, vegan and delicious, must be readily available to prevent states of hangriness. No one wants to see me when I’m hangry, it’s not pretty.

Dog friendly workplace – My dog has separation anxiety and needs to be with his people or he cries. No one wants to be responsible for making my dog cry.

After giving it more thought, maybe I don’t really want a traditional job. I realize that not HAVING to work is a luxury and I am very grateful for that. Being a stay-at-home parent is something that not everyone can (or wants to) do. It can be hard, but rewarding work. I have the opportunity to volunteer in the school library, accompany my son’s class on field trips, and go grocery shopping in relative solitude.

While occasional feelings of guilt and insecurity for not being a rare Super Survivor may pass through my mind, I realize that my life is pretty awesome (aside from the cancer part). Self pity posts are hereby over. We shall now return to our regular programming.

Confession

When you find out you have a GBM, it’s a terrifying and lonely experience. Some may seek other patients through support groups. Some find others through various online sources – Twitter, Facebook, etc. It’s important to find people who have an understanding of what you’re experiencing, to know you’re not alone. Caregivers need those contacts too, sometimes even more critically than the patient. Perhaps you get to the point where YOU can provide that support to others who find themselves with the same or similar diagnosis. It can be very inspirational and motivating. But it can also be very emotional.

Seeing your friends and/or loved ones decline or die – as many with GBMs do eventually – can become too much. Being reminded of what may be in store for you can become more than you can handle. Losing so many people to a disease you also have can send you into a serious downward emotional spiral. It eats away at hope and distracts you from the joys of everyday life. It’s your fate, be it tomorrow or 2 years or 10 years. Watching or hearing that someone is at the end of their journey can pack a wallop to your positive thinking.

And then there’s the guilt. You know that there are others out there that need your support and encouragement. You know that they may be suffering – emotionally and/or physically. You know they’re probably scared. You know they’re worried about their families. And yet, you’re afraid to get too close, become friends only to watch them suffer and potentially lose their battle. At least I am. Sometimes it’s easier to just stay in my little bubble of fear, self pity, and self imposed ‘ignorance’. I’m not strong enough to bear the burden, to watch them succumb to this disease. I’m selfish and uncaring, I’ve abandoned others, I’m emotionally weak. At least those are the thoughts that flow through my mind. It’s hard to admit this publicly, but I’m pretty sure I’m not the only one.

It’s okay for us to admit our weaknesses and fears throughout this process. It’s a whirlwind of emotions and there are good days and bad days. Other patients may have the strength to experience loss after loss and that ability is like a super power. I wish I had that strength, but knowing I could be the one suffering as I die at any point is too much for me to handle. If someone asks for my support or advice, I’ll be right there to offer it. But then I’ll likely retreat back into my hobbit hole of ‘ignorance’ until the next request. Honesty and guilt while compartmentalizing my experience between an open ended death sentence and managing my everyday life – just another part of having an aggressive malignant brain tumor.

Open Ended Death Sentence

A few people have asked me about my reaction to Brittany Maynard’s death. How do you feel about it? Does it upset you? Do you think it was ‘right’? Would you do the same thing? Do you think she gave up and should have gone through surgery and treatment? And so on. Brittany isn’t the first one to die of this disease, there are many others who fight the battle and lose. We lose people to GBMs every day. We also see survivors who inspire hope and promise.

Very few of us know what was really happening with Brittany. We can all make assumptions and quickly move into criticism, judgement or support for her choice to die with dignity. Some will quickly call her decision, her ‘suicide’, immoral and she shall be damned for eternity. Maybe some people don’t believe Brittany should have ended her life, some say she should have fought harder, and others called her brave for making that hard decision and bringing the ‘die with dignity’ discussion to the forefront.

No one but Brittany, her family and her doctors know her circumstances, the details behind her tumor, and her final decision. She was diagnosed in January and ultimately chose not to seek aggressive treatment. She chose to die her way. She chose to use her situation to bring attention to ‘Die with Dignity’ laws in the country.

The one thing that I AM bothered by is the fact that her story brought a lot of attention to the ‘Right to Die’ laws, but very little discussion about brain cancer. It was a lost opportunity to open a dialogue about the need for awareness and funding to find treatments and even a cure, making sure that no one suffers through this disease of has to choose how they die. But I’m stating that disappointment from the perspective of someone fighting the same deadly tumor, which gives me a little bit of a bias.

NBC was one of the only news outlets that seemed to focus on the issue of brain cancer.  The article is here.

In contrast, Lauren Hill – another terminal brain cancer patient – has chosen to spend her final days raising funds and awareness for Diffuse Intrinsic Pontine Glioma (DIPG). This pediatric brain cancer is as deadly as Glioblastoma Multiforme. Her community has rallied around her with support and love.

Both Brittany and Lauren had/have terminal illnesses. They both chose how to raise awareness for what was most important to them. Neither decision was right or wrong, it was their decision and we should respect that even if it’s not what we would choose to do ourselves.

Living with a terminal illness with an open-ended completion date can be a little stressful at times. Ok, very stressful. Knowing you’re going to die from a terminal illness, just not when, can lead you to become paralyzed with fear OR it can lead you to enjoy the beauty that each day offers. More realistically, however, it’s a combination of both – sometimes in the same day. It will cause you to plan for the inevitable, privately or publicly.

Many of us might not make the same decisions as Brittany OR Lauren. Does that make one of us ‘stronger’, ‘braver’ or ‘weaker’ than the other? No. It just means that we’re all individuals fighting a disease that we know will eventually take our lives…sooner or later…and how we each deal with that is going to be a very individual experience from diagnosis to treatment to death. Brittany and Lauren made their choices and so will we.