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.

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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Waiting With Bated Breath

Most of us with stage IV brain cancer (or any type of cancer, really) talk and think about how far ahead we plan our lives. At first it’s ‘recovering from surgery’, then ‘getting through radiation’, and other short-term, cancer related ‘milestones’.

Then it’s 4 week MRIs…8 week MRIs…12 week MRIs… And with any luck it doesn’t go backward from there. We feel nervous about planning anything beyond those timeframes. We live MRI to MRI.

At some point, when things are going well, we might venture out beyond the 12 weeks and plan a trip/vacation or buy concert tickets for a show 6 months away.

BIG family milestones might be too much – entering high school, first dates, driver’s license, graduations, weddings, babies. Those may be too far out and we can only tentatively hope beyond hope that we are here to witness it all. (My kids are 8 and 11, so we’re a ways off from most of those)

So, you start to find other, safer perhaps, big events that push you forward in your fight. Maybe it’s the World Series, the Superbowl or the World Cup if you’re a big sports fan. Maybe it’s the harvest if you’re a gardening fanatic and have been waiting 3 years for that Avocado tree to produce something…even just one avocado. Maybe if you are glued to political drama, it’s to view actual bipartisan decision-making in Congress or witness politicians representing the people instead of the money. Ok, that last one isn’t very realistic, but you get the idea.

For me (family milestones aside), I aim my survival goals at when the next Diana Gabaldon novel is coming out. I aim for making it through the final part of season one of Outlander on Starz (April can’t come soon enough.) I aim to see if I finally make a decision on joining a yoga studio. Can I get to 10,000 steps a day? Are there enough recipes to use all of my son’s harvest of sweet potatoes? Will the dog EVER learn to get his leash on his own when we’re going for a walk instead of staring at me while I suggest the idea? Will I ever get up the courage to make artisanal vegan cheese? Will we ever learn who was responsible for making that idiotic last call for the Seahawks causing them to lose the championship?

These may not be the most important survival goals in the grander scheme of things, but they all take me past the next MRI. They get me back to living for tomorrow and beyond regardless of what my brain tumor cells decide to do.

My next MRI is Friday, by the way.

What If?

It was MRI day for me today. The typical anxiety and ‘what ifs’ set in this week.

What if it’s back. What if we have to explain the possibility of more surgery and associated risks to our kids. What if we have to explain that I may die. What if I do die.

Every mother out there is familiar with the ‘what ifs’. Once you have children, a whole new set of fears enter your brain. You know what they are. This is really no different, except that to address these ‘what ifs’ I can’t double check the window locks. I can’t tighten the straps of a helmet. I can’t teach them about stranger danger. I can’t teach them how to defend themselves against the bad guys.

I’m fighting as hard as I can against the bad guy lurking in my brain and so far, I’m winning. The ‘what ifs’ have lost.

MRI was clear. 17 months clear.

MRI #2, This One Was For Science

Some of you knew that I was having an MRI yesterday. My last was 4 weeks ago. This one was required for the vaccine trial…that’s all.

I had switched back to an 8 week cycle for my anxiety. Between the visits for MRIs and vaccines, I’ve seen my neuro-oncologist more often than I’ve seen some of my closest friends. I’ve also had appointments with cutaneous oncology and a rheumatologist. Those last two for my psoriasis – which flared after I stopped my chemotherapy. So, for those of you who wonder if chemo helps reduce symptoms of psoriasis, my answer would be yes.

I almost think that since there’s nothing interesting going on with my brain at the moment, they feel the need to find other things to focus on. While I do have other health issues, they are very minor in comparison to brain cancer. Everything else can be solved with a little topical creams and a good chiropractor. Now that they know that, I’m hoping they give up the search.

But anyhoo, I had another MRI and nothing has changed since my last MRI 4 weeks ago. BUT it was at 7am. This is way too early for me and most people I know. Luckily I found a ride (thank you!) and started my day with a nap in a tube that made Atari ‘video game’ noises.

My next appointment was at 1pm. So, I spent my day trying to stay warm at the Stanford mall – an outdoor mall configured in such a way that the freezing winds blow powerfully at you from all angles. I thought maybe I’d get some Christmas shopping done. I sat in Starbucks to stay warm while waiting for stores to open and the reality of having carry any presents around for the rest of the day occurred to me. Ultimately, I did VERY little buying and a lot of browsing – mostly just to get out of the icy cold wind and avoid sitting in the Cancer Center for hours.

It all made for a very unexciting and long, cold day. Needless to say I’m going to go back to a 12 week MRI schedule. My neuro-oncologist has better things to do with his time and so do I.

Happy MRI Day!

It was MRI day today.

A bright and early, first of the day MRI.

So early that my coffee hadn’t kicked in to give me time to really panic or get overly anxious.

While there’s always some anxiety before you get an MRI when you have a brain tumor, especially a GBM, for some reason I wasn’t particularly anxious before this one. I may have been too busy to worry. I may have felt too healthy to worry. I may have had fewer made-up symptoms to make me worry. Last night, as I was putting a load of laundry in, I thought I saw a spider out of the corner of my eye. I looked at the spot where I thought I saw it and there was nothing there. I had a moment of panic – one of the vague things I remember pre-discovery was ‘seeing’ things that weren’t there – mere glimpses out of the corner of my eye. Turns out this particular spider existed…well he did exist, until I squished him (while others in the family are believers in ‘catch & release’ method, I believe in squishing when it comes to spiders.) I sighed in relief, which may be the one and only time I was relieved to see a spider. This spider being real and not just a figment of my imagination provided me with indisputable proof that the tumor had not returned.

So I was not surprised that my MRI showed no changes this morning. The tumor has, in fact, not returned. I passed all of my neurological tests…again. I have at least 3 ideas on how to mess with them the next time I do these tests. Doctors and nurses LOVE it when patients mess with them while testing for signs of trouble in their neurological functions.

Timing of my appointments for the day allowed me to have a free chair massage, eat lunch, and shut my eyes while we waited. A good wireless connection allowed my husband to work with minor interruptions.

There’s nothing I like more than good news.

Your challenge of the day: Why did Peyton Manning get suggested as a Tag on this post?

Good News, Bad News

I had my MRI on Wednesday this week – my first in the 12 week interval schedule. Given the hospital construction, things are a little discombobulated. The MRI machine I was taken to was in a trailer in the parking lot. I felt like I was being brought into one of those cheesy traveling carnival rides – like a fun house. Otherwise, it was the essentially the same experience as all of my other MRIs.

There were some changes in my brain since my last MRI, but nothing concerning – they assume it’s still healing and scar tissue and not new tumor growth. So there’s the good news.

I was so excited that I decided to celebrate by having a seizure and spending the night in the hospital.

Apparently my seizure aura (warning that a seizure is coming) really IS expressive aphasia. For those of you who don’t know, that’s when I can’t get the words from my brain to my mouth to speak or hands to write. (I don’t remember any of this, mind you, but it’s what I was told happened.) I went inside, lay down and could speak again. Then I couldn’t. When I got up to go to Stanford (my husband driving), I had a seizure. I go all out with mine – full grand mal. Then I had another…and another. An ambulance was called and I had another in the truck as I was carted off to the closest emergency room. Tests, drugs, and some more drugs later I was determined to be healthy – essentially no strokes or brain bleeds and since I’d just gotten my MRI results, we knew the tumor wasn’t back. My anti-seizure medicine was increased. I was kept for observation overnight and had the joy of being woken up from my drug induced state every couple of hours all night long.

There is some speculation about why I had a seizure since I didn’t miss any doses of my meds and we had proof the tumor wasn’t back. Exhaustion, stress, migraine were all brought up as possible triggers. I refrained from saying, ‘that giant hole in my brain doesn’t have any impact?’ One question I had was why my aphasia would go away when I lay down. I don’t think we got an answer. I don’t remember most of those 24 hours, to be honest.

Eventually, they decided to set me free. I’ve now come home to rest, recover (every muscle in my body is sore) and get my head around losing my freedom of driving again. Anyone want to carpool?

We see my Neuro-oncologist on Wednesday, so we’ll hopefully find out more then about what this exciting event does to our treatment plan.

Paranoia, Pain, And The Tumor’s Return?

One of my fellow brain tumor fighters tweeted this yesterday:

‘With a brain tumor any headache, item forgotten, stumble, slurred word or vision issue can cause fear.’

I have an MRI next week and the anxiety has begun. I would have been anxious as it was, but I’ve also spent 3 days this week with migraines. I feel like I’ve been forgetting things more than usual. I’ve struggled to find some of my words. Basically, there are all kinds of reasons for anxiety to set in – the question is whether it’s warranted. Brain tumor survivors (if we’re alive, we’re survivors in my mind – no pun intended) are constantly paranoid about anything out of the ordinary. But maybe we’re just looking harder for the signs that the other shoe is about to drop.

The evidence that points to paranoia and anxiety not being warranted:

– I’ve been sleeping like crap. The itchy dog with a new diet wakes up in the middle of the night scratching or needing to go outside. I’m a light sleeper (having babies will do that to you) so I’m awake at the first jingle of his collar or the slightest whine of request.

– My migraines arrived just in time for a visit with my parents (sorry Mom & Dad). My biggest trigger is hormones, so there’s nothing to avoid in my daily diet or activities that can prevent it. All I can do is take the drugs and ride it out, praying it doesn’t last too long. Well, it did last too long…but when it’s a migraine, 3 minutes is too long – 3 days is a new level of hell.

– Allergies kicked in and I’ve been very congested and headachy. My face hurts, my ears hurt and there’s not a damn thing I can do about it except use my neti pot and slather on some Vick’s Vaporub. Sleeping with my head elevated doesn’t help my first problem, but maybe it helps prevent a sinus headache? It feels like I’m fighting against myself when all I need to do is lay down to sleep and yet laying down causes more pain and less sleep.

– I’m still recovering from sleeping on the ground and a crappy mattress a few weeks ago and my back is slowly getting itself back into order. For anyone who’s experienced a pelvis and sacrum out of alignment, you’ll know the pain that comes with every step. Add a rib out of alignment and the pain will drive you to tears. And there’s no magic trick to make that shit go away.

With the sleep deprivation, the migraines, and the constant pain it’s not surprising that I’m a little more forgetful or I struggle to find a word or two more often than other weeks. Right?

I’ve got a pretty high pain tolerance, but head or back pain is all consuming, you can’t escape it. It’s pain that changes your personality. It’s relentless pain that drives you to distraction. I don’t know how people living with chronic pain do it. While 3 days feels like a lifetime, I know my migraines will go away. I know my back pain will go away. I know I will get back to a normal sleeping pattern without being woken up by an invisible arrow being shot through my ribs (I’m still working on the itchy, farty dog.) It may not feel like it will end, but when I blow away some of the fog created by the pain, I can remind myself it won’t last forever. For those people suffering extreme chronic pain, it’s got to wear them down, physically and mentally.

So, I’ll count my blessings, breathe, and remain positive. My MRI will be clear. We will find a diet that minimizes the dog’s itchiness and gas. My hormones will level out and my migraine will retreat (when does menopause arrive?) My pelvis and sacrum will cooperate and stay aligned as best as they know how. My allergies will pass and we’ll breeze through cold and flu season unscathed.

I would, however, like to request a button that indicates whether my severe headache is due to migraine, sinus congestion, muscle tension or a brain tumor recurrence. If someone could get right on that, I’d appreciate it.