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!

 

 

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

ALWAYS Knock on Wood

I mentioned in my last post that my MRI was last Friday. And it was.

The results showed little to no change in the inflammation they believe is there – i.e. its not acting like a tumor, so we assume it’s not a tumor. That makes sense to us, so we’re going with it. I am perfectly healthy otherwise – showing no symptoms outside the ordinary, so there’s no reason to believe it’s anything but inflammation. That would occur because of the vaccine or my body’s natural defenses – having an auto-immune disease may have it’s perks after all.

THEN I went and had a seizure on Tuesday. Out of the blue. I made dinner, sat down to eat with my family, we had a lovely conversation and WHAM! An ambulance was called (2 showed up) and off I went to the hospital. This time though, I was coming around by the time they were moving me to the gurney. By the time we got to the hospital, I was chatting with the EMTs like we were old friends. I donated some blood and pee, had a CAT scan, doctors were consulted, my anti-seizure drugs were increased and was on my way back home.

Two things came out of this experience. 1. Ativan did what it was supposed to do and prevented status epilepticus. 2. I am back to no driving – for an indefinite period of time.

(Let me clarify for my readers – when I previously mentioned that I’d passed the muster for the DMV, it was just an annual check in. I HAD been driving and they touch base each year to make sure I am still capable of driving safely.)

So, just when I think it’s all going so well, my brain reminds me that I’m still on the brain cancer roller coaster. ‘Don’t get too comfortable now, ya hear?’ Stupid cancer. Also, while I was bragging about how awesome I’m doing, I did NOT knock on wood. I’m pretty sure that’s where I got screwed. Remember, always knock on wood when you talk about how awesome your life is going.

Now I’m trying to figure out how to drop off/pick up two kids at two different schools on bikes or feet. The Valley Transit Authority will be getting revenue from me after all. And my friends and family may be called on to bring me on their errands (sorry!)

To quote someone very wise: ‘Crap on a cracker.’

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.

The Irony

There are lots of things in this crazy world that are ironic. Just ask Alanis Marmoset (I know it’s Morissette, Marmoset is just more fun to say.) Rain on your wedding day and all that.

The irony in some of the treatments for a myriad of conditions are ridiculous. I guess that’s likely true for most medical treatments of one kind or another. Just listen to the legal warnings at the end of each commercial for the latest drug. Antidepressants that may cause thoughts of suicide. Erectile dysfunction drugs that may cause erections that won’t go away (yes, I said erection.) Blood pressure medicine that may increase your blood pressure or cause a heart attack. Any number of biologics carry multiple risks, but risks that so many are willing to take to manage an illness or relieve their pain.

With cancer, most of us willingly accept and take those risks and more – chemotherapy, radiation, experimental drugs.

Chemotherapy kills cells, attacking the cancer, but also attacks healthy cells. It makes you feel like hell. Perhaps because of this effect, it carries the risk of serious infection and potential development of unrelated cancers. Irony.

Radiation treatment specifically for brain tumors – targeted or more broadly focused – carries the risk of brain swelling, brain damage, OR brain tumors. Irony.

Anti-seizure medication or combinations of medicines carry the risk of triggering seizures. Irony

Some drugs – like antibiotics, meant to rid your body of potentially deadly bacteria, can reduce seizure thresholds and trigger a seizure. With a history of status epilepticus, it might kill you. Irony.

Experimental drugs carry a series of risks and depending on the phase of the trial, some of those risks are unknown – hence, why they’re in trial. These drugs can trigger new illnesses, potential fatal reaction or extend the impact of the disease you’re trying to fight. Irony.

Most of us are willing to take the risk, but the irony is not lost on us. While we battle a disease that is trying to kill us, we risk possible death and do so willingly. Ironic indeed.

The trick is knowing what to ask your doctors about the risks when you’re prescribed medicines or begin a new treatment, take the time to consult with your pharmacist any time you start a new medication, and read those long lists of potential side effects for the medications you’re taking to understand any risks and contraindications. Essentially, be informed and don’t assume that what you’re prescribed is safe – especially if you have multiple doctors – as we all seem to in the world of cancer. Carry around a list of your medications – with doses – so you can make sure you don’t forget any of them when you are discussing new treatments. Don’t become a cautionary tale and get added to the next Alanis Marmoset song about the many ironies in life.

 

As an aside – there are thousands of plants in the Amazon jungles alone that can be used to treat a wide range of illness and disease – including cancers – but in the name of ‘progress’, those forests and all they offer the world are being destroyed at incredible rates. Not only are we destroying the homes of the indigenous people, we’re destroying potential sources of a cure. Irony or ignorance?