So, I'm happy to tell you: The "dirty dozen" is DONE!!! Yesterday was my final nasty taxol infusion, and it came just in time. Pretty soon I can start feeling better again and begin climbing out of this deep crater created by chemo. At the moment, it is Friday night, and I'm still flying high and energetic from the steroids I got yesterday - a little tease of feeling almost normal - and I want to take advantage of it before it wears off and I'm dumped back into the bunker for awhile. Which will be tomorrow sometime...
The past 12 weeks, as the taxol has been cumulatively (presumably!) killing the rogue cells, it has of course caused some unwelcome casualties in it's wake. Like.... the dent in my couch. From my ass being on it for hours on end. And...I've become a CNN junkie, watching the most incredible reality show that chronicles the mess of this country politic, but I won't go there right now. (But O my God - whatever your politics might be, can we all agree that we are in the middle of a massive shit show?)
Here's me making my dent -
The degree of fatigue I've been having I had read descriptions of, but to experience it is very humbling. I went from a healthy and basically fit individual to a place of getting out of breath just making my bed, or going to my basement to grab a load of laundry. So I stopped making my bed. Especially since I'm in it a lot more. And I actually stretched not having to do laundry for a full 4 weeks. I have tons of socks and underwear I guess. My resting heart rate has gone from 64 beats per minute to a current 99!! I'm about 15 pounds heavier than I was when I started, and I feel like a big, swollen, puffball. Well, I literally AM a swollen puffball, because this stuff causes inflammation. Other than my needing to remove my wedding rings, it's not visible, but I feel it, and I'm so very uncomfortable in my skin. Which, by the way, is crazy dry. And my fingernails - ouch. I didn't know nail beds could hurt from just pulling on socks or scratching an itch. Toes too. Neuropathy (nerve pain) is a common side effect of taxol. Typing this right now is painful. The good news is that it will go away. After a few months, that is. Nerves are notoriously slow healers.
On a walkabout at Dana Farber one day, I ran into this cutie, and I had to have a chat with him. How can you not be happy next to this guy? This is in the halls between Dana Farber on the way to the Jimmy Fund Clinic (pediatrics). I'm still a kid inside.
So - what's good? LOTS! Life goes on. We recently celebrated the 18th birthday of my youngest stepson, who's about to graduate from high school. My daughter, a freshman, is going to sing a solo at her "Coffee House" unplugged concert in a couple of weeks at her school. My son just brought me some Fuddruckers onion rings (aka guilty contraband cheat food, and likely contributing to this weight gain but I don't care, bring me more.) I guess my point is that I love all the little things that life is. It's what gets me through the day, really. That, and having the best husband and partner, who takes great care of all the things I currently can not. He never complains. His loving smile, and those of my kids, are stronger than side effects. Actually, they are the antidote.
In celebration of yesterday's milestone, I asked my nurses for a picture, and here they are. Colleen and Lisa are the best! They became my constants in a place where I entered scared 12 weeks ago (I can admit that now.) I love having the consistency of being tended to by one (or both!) of them every week. I never feel like I'm on a conveyor belt, I'm always cared for in the most personal and professional way. I will still see them for the next 9 months, on a 3 week schedule, to continue my infusions of Herceptin (which is technically chemotherapy, but "targeted" therapy (with no side effects) that acts to block the receptor that allows the formation of a cancer cell in the first place, whereas the taxol killed cancer cells already there). *Cousin Neil (who is a real life cancer researcher who gets on covers of major scientific magazines), if I messed that explanation up, please feel free to correct me in comment section!
And here is a picture of the Zakim, my favorite bridge in Boston, taken from the car as we were speeding by on the way home one night.
Its strong steel cables, lit up, reinforcing each other and holding up the weight of God-knows-how-many tons of concrete, re-bar, and vehicles, inspires me for some reason. I like to imagine that underneath all this puff ball, inflammation, weight gain, fatiguey mess of me that I'm still really me and I'm like the bridge. I'll dig myself out and get my strength back soon enough. I know I have a few weeks before the side effects begin to lift, and I need to get myself as physically fit as possible before the final phase of this thing, which will be the surgery on May 17. A whole new set of challenges to navigate. But it's all going to be fine. I know this because my sister Maureen said so. Look:
If you haven't figured it out already, I have extremely strong family ties. It's really important in something like this, and I'm lucky that I'm unable to imagine anything different. I may not see or talk to everyone everyday, but it doesn't matter. "The Will of the Siblinghood" sounds like a great book title. Thanks Moe!
One more picture: This was Christmas Eve 2016, all the Siblings and me, and Mom. In our pajamas. Cuz that's how we roll. Goodnight!
The past 12 weeks, as the taxol has been cumulatively (presumably!) killing the rogue cells, it has of course caused some unwelcome casualties in it's wake. Like.... the dent in my couch. From my ass being on it for hours on end. And...I've become a CNN junkie, watching the most incredible reality show that chronicles the mess of this country politic, but I won't go there right now. (But O my God - whatever your politics might be, can we all agree that we are in the middle of a massive shit show?)
Here's me making my dent -
The degree of fatigue I've been having I had read descriptions of, but to experience it is very humbling. I went from a healthy and basically fit individual to a place of getting out of breath just making my bed, or going to my basement to grab a load of laundry. So I stopped making my bed. Especially since I'm in it a lot more. And I actually stretched not having to do laundry for a full 4 weeks. I have tons of socks and underwear I guess. My resting heart rate has gone from 64 beats per minute to a current 99!! I'm about 15 pounds heavier than I was when I started, and I feel like a big, swollen, puffball. Well, I literally AM a swollen puffball, because this stuff causes inflammation. Other than my needing to remove my wedding rings, it's not visible, but I feel it, and I'm so very uncomfortable in my skin. Which, by the way, is crazy dry. And my fingernails - ouch. I didn't know nail beds could hurt from just pulling on socks or scratching an itch. Toes too. Neuropathy (nerve pain) is a common side effect of taxol. Typing this right now is painful. The good news is that it will go away. After a few months, that is. Nerves are notoriously slow healers.
On a walkabout at Dana Farber one day, I ran into this cutie, and I had to have a chat with him. How can you not be happy next to this guy? This is in the halls between Dana Farber on the way to the Jimmy Fund Clinic (pediatrics). I'm still a kid inside.
So - what's good? LOTS! Life goes on. We recently celebrated the 18th birthday of my youngest stepson, who's about to graduate from high school. My daughter, a freshman, is going to sing a solo at her "Coffee House" unplugged concert in a couple of weeks at her school. My son just brought me some Fuddruckers onion rings (aka guilty contraband cheat food, and likely contributing to this weight gain but I don't care, bring me more.) I guess my point is that I love all the little things that life is. It's what gets me through the day, really. That, and having the best husband and partner, who takes great care of all the things I currently can not. He never complains. His loving smile, and those of my kids, are stronger than side effects. Actually, they are the antidote.
In celebration of yesterday's milestone, I asked my nurses for a picture, and here they are. Colleen and Lisa are the best! They became my constants in a place where I entered scared 12 weeks ago (I can admit that now.) I love having the consistency of being tended to by one (or both!) of them every week. I never feel like I'm on a conveyor belt, I'm always cared for in the most personal and professional way. I will still see them for the next 9 months, on a 3 week schedule, to continue my infusions of Herceptin (which is technically chemotherapy, but "targeted" therapy (with no side effects) that acts to block the receptor that allows the formation of a cancer cell in the first place, whereas the taxol killed cancer cells already there). *Cousin Neil (who is a real life cancer researcher who gets on covers of major scientific magazines), if I messed that explanation up, please feel free to correct me in comment section!
And here is a picture of the Zakim, my favorite bridge in Boston, taken from the car as we were speeding by on the way home one night.
One more picture: This was Christmas Eve 2016, all the Siblings and me, and Mom. In our pajamas. Cuz that's how we roll. Goodnight!
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