Saturday, June 18, 2011

brown paper package.

The oral chemotherapy I take is manufactured by and delivered from a special pharmacy. I will never forget the day the first batch arrived.

I was given very specific instructions on how and when to take it-how long to wait after eating to take the anti-nausea pill, how long to wait after that for the chemo, how long to wait before taking my other evening from 6-11 was to be meticulously scheduled.

On that first night, once all the necessary protocols were followed, we opened the box and took out the card that contained the first set of pills.

I held them in my hand and stared at them for a long time, trembling. these pills held poison that i was about to ingest into my body. these chemicals were necessary to kill rapidly-dividing cells. these chemicals were necessary. these chemicals were necessary. I was terrified. and rightly so.

That first night brought on 9 rounds of violent vomiting. Within the first 3 days, I lost 4 pounds. Luckily doc put me on a much, much stronger anti-nausea med and those symptoms improved significantly as the days went on until they were basically non-existent (don't worry-that weight came back on in no time). I also followed the guidelines about what to eat and at what temperature, level of spiciness, and so on.

I took these pills every day for 6 weeks while also undergoing radiation treatments. Then I was to have four weeks "off" of both treatments so the healthy cells that were damaged in the process could rebuild themselves. (Meanwhile they are weaning me off a steroid I had to take to prevent brain swelling during radiation, which has its own effects-perhaps a different post for this one.)

Which brings us to now. A package arrived on Thursday that held my next batch of chemotherapy drugs. Starting tomorrow I will be 5 days on/23 days off for 12 months. These pills will be double the dose of what I took last cycle since I will be taking them fewer days a month.

At a previous visit, my neuro-oncologist said that I will be eased up to a higher dose. I thought that meant that they will ease me into this double dose for this next cycle. Wrong again. I will start with the double dose and might be increased to an even higher dosage in the upcoming months.

At this point you'd think I would not be fazed by anything I learn at my appointments. Nope. Still troubled.

On Thursday, when this package arrived, I opened the box to see the pills I will be taking on Monday and every 28 days after that.

I held them in my hand and stared at them for a long time, trembling.

Wednesday, June 8, 2011

beautiful people.

I had my eye out for brain tumor walks for a while and was really excited when I saw that one was coming to Buffalo. so I made up a team name that amused me (it doesn't take much) and signed up.

I posted a link to it on facebook in NOVEMBER (in case you missed the obnoxious oval in the screenshot), hoping more teams around town would sign up and make the event successful. I liked the idea of a big event like this coming to Buffalo every year. I loved the idea of being able to walk among survivors and friends and friends of survivors and people from around Buffalo who just want to support a cause.

At that time I was having various issues but a second brain tumor was not even discovered until a month later. TO THE DAY. (the news came after hours. I wished my neurosurgeon an early happy new year.)

Months later, an "event" appeared on my facebook news-feed. an event that earned a spot on the "top news" section. an event where the default photo was my face silk-screened onto a t-shirt. an event i couldn't believe was "happening now".

and it didn't stop there. the items for sale kept popping up, like beautiful teal bubbles of compassion. on the jerseys of my husband's hockey team. on a tote held by a friend in a different state. on a t-shirt worn by a friend of my husband's mom (who I don't know). on a sign on a tent in Delaware Park. on a group of people who joined a team-who understand the severity of the situation-who want to raise money for this under-funded disease ("Why did this happen?" "We have no idea.")-who want to show they care.

Beautiful people had it in their hearts to create. Beautiful people made it possible to wear my heart on their sleeves. Beautiful people wore my heart on their sleeves.

*beautiful people part 2 (the benefit edition) still to come.
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