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 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.




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.

Cephalalgia? Who knew?

Headaches – I’ve had migraines ever since I hit puberty – hormones are a necessary, but unpleasant part of life. I’ve had headaches because I clench my teeth from stress. I’ve had headaches because I spent 14 years staring at a computer screen all day and eventually most nights. I’ve had headaches because of my allergies clogged up my sinuses. Headaches were a regular thing – some minor, some not. I’m no stranger to a headache. Did I have more leading up to my Brain Surprise? I honestly can’t say. BUT, I’ve had some doozies since.

For those of you unfamiliar with a craniotomy – it involves shaving some hair off (did I mention that my neurosurgeon was kind? He – or rather, one of his steady handed residents – shaved only what he needed to and what my other hair would largely cover post surgery.) They remove part of your skull to get in there to do what they need to do. They reattach that piece of skull with magic. Ok, it’s not magic, but that sounds way more exciting than wires and screws or whatever they actually used – some things deserve to be a mystery. They stitch you back up. Turns out – this hurts. Oh, and the part where they’ve cut part of your brain out? That hurts too.

About a week after surgery, I had a migraine. Of course, at the time we didn’t know that’s what was causing my head to feel like it would explode. I’d just had brain surgery and was on some delicious opiates. We called the doctor and he told us to increase the Percocet – to manage the ‘post-surgery headache’ I was experiencing. It got worse. So off we went to the Emergency Room. If you’ve just had brain surgery and the pain medicine isn’t working, they insist on ruling out a brain bleed, brain swelling, stroke – requiring lots of expensive tests and hours in the VERY bright, VERY loud ER.  When you’ve suffered from migraines most of your life, you feel really silly when the ER doctor and the neurosurgeons say – after hours in the ER and after a CT scan and after blood tests – ‘it’s a migraine.’ At that point, it becomes quite obvious. What we didn’t know was that opiates exacerbate a migraine. We were putting gasoline on a fire. The good thing about it being a migraine is the fact that a simple shot in the belly takes the pain away in under 5 minutes – like magic!

The next big one was during my 6 week chemorad (chemo+radiation). Going through radiation causes your brain to swell. When you consider for a moment what radiation is, this perhaps seems obvious. They asked me weekly ‘have you had any headaches?’ Every week I said, ‘no, not anything serious.’ This time we KNEW headaches from radiation were a possibility. So, why was it a surprise when I got a headache and it started to get serious? I have no idea. Another phone call to the doctor. He put me on steroids to control the swelling and the headache went away. Luckily I was able to taper off quickly as my brain shrunk back down to normal size.

I haven’t had anything more than a minor headache since.