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.
Well, my bone marrow hates me. It’s official.
I had my pre-chemo appointment today – saw the vampires, peed in a cup, met with my oncologist.
My platelets are at 98…2 frickin’ ‘whatevers’ off the target 100. A week ago they were 104. Under 100 means no chemo.
Now I have to test again next week.
But we’ve decided that after the next round – #6 – I’ll be done with Temodar since my body doesn’t seem to care for it. 6 months is pretty standard, apparently. The bulk of the benefit was in the initial 6 weeks of treatment, we’re told. Some people continue Temodar for 12 months, some longer, but there’s debate about how much benefit it really offers.
I have mixed feelings about this decision. On the one hand, I’ll have what will hopefully be an enormous break from filling my body with toxins. On the other hand, it’s one less thing I’m doing to keep the beast at bay. I will continue the vaccine trial, so it’s not like I’m doing nothing…but still.
And the roller coaster of emotions continues.
Well, here we are on day 5 of my new lower dose of Temodar. I’ve survived to fight another day.
I’ve had only moments of nausea. I stayed on top of my anti-nausea meds, but it’s not clear how badly I needed them. I ate and cooked meals for my family with little to no difficulty. I planned and shopped for easy dinners to make sure I wasn’t trying to figure out what to cook while I had no energy or felt like hurling at the smell of any food within arms reach. This meant that we ate less than whole foods this week (unless you consider vegan pigs-in-a-blanket whole, non-processed food), but we’ll make up for it next week.
I am tired. I feel like I need about 3 hours more sleep each day. But honestly, it’s not nearly as bad as with the larger dose. I’ve been able to drive my kids to and from camp and other activities. I ran a few errands. I went to yoga class – with the inspiring older ladies and gentlemen who continue to show their aging, more fragile bodies that they’re still in charge, dammit. We’ll see how I feel this afternoon and tomorrow as the cumulative effect settles in.
I think I can live with this dose quite easily, though. I don’t think it would stop me from taking a trip – as long as it’s not to run a marathon or backpack into the Sierras. I can still live my life and care for my family. I am less dependent on others, so they can continue to live their lives as well. I feel more like myself, even if it’s a more tired, chemo-brained version of myself.
We’ll see what this lower dose does to my platelets and whether it continues to help keep the beast at bay. Fingers crossed.
Today was my pre-chemo appointment with my neuro-oncologist (NO). These appointments start with a trip to the lab to see the vampires and pee in a cup. With luck, we know my platelet count before or during my visit with my NO.
1. Being early and hydrated makes the lab visit go WAY faster.
2. No bears were sighted on Alaskan cruise. Mrs. Dr. Recht is sad.
3. My platelets are stubbornly hovering just UNDER 100 (95 specifically), which means I can’t start my chemo today.
4. We’re reducing my dosage. Yes, you guessed it – the pills I waited around for all yesterday morning are now worthless to me. Temodar comes in specific dosed sizes…none of which translate to my new dosage. I’ll have to wait around for another delivery now.
5. I have my blood work done again next week to see if my platelets are cooperating. If they are, I’ll start after a quick weekend trip with my daughter to AZ to see some of our favorite people.
Planning beyond that is once again thwarted.
I’m finally feeling reasonably human again after this round of chemo. Maybe it was just that I was feeling so good and the shock of it was greater. Maybe the month off cleared so much of the previously ingested toxins out of my system that it really just hit me harder.
I took my first dose on Tuesday, by Friday night I was constantly nauseous – in spite of my efforts to stay ahead of it with my anti-nausea medicine. I couldn’t eat more than saltines – even my ‘go to’ toast with PB was disgusting. I couldn’t open the fridge without gagging. I already have super smell (NOT a super power it turns out), but this goes way beyond my normal sensitivity. I was exhausted, my mind was foggy. Every time I tried to do something – say shower – I needed to lay down after. I spent Friday night, Saturday, Sunday, and most of Monday in bed aside from brief forays outside or to the kitchen to refill my water bottle.
My husband became a single father and did an amazing job. The kids were anxious and worried – though they didn’t say it outright – and it showed in their behavior. He handled it beautifully – keeping them busy, teaching them lessons of why you shouldn’t beat on your sibling, giving them space to feel whatever they were feeling. All while keeping his cool and taking care of me – mostly just letting me sleep/wallow in my nausea.
It wasn’t fun. I don’t really want to do it again. I will if it means keeping the beast locked behind a door, but I don’t want to.
I wonder what the REAL definition is when the doctor says you ‘tolerate’ Temodar well. Does he mean it creates the ‘normal’ level of hell or does he mean it doesn’t kill you? I’ll have to ask him when we see him again on the 15th in preparation for the next steps.
Until then, I’m going to eat a lot to try to regain the weight I’ve lost (never thought I’d say that), enjoy the beautiful weather, hug my kids a lot, kiss my husband, and relish some glorious between days.