Monday marked treatment number nine of twelve. That’s 3/4 of the way done, for those of you scoring at home. The most exciting development is that my doctor agreed to stop giving me any more Bleomycin. “Bleo” as the nurses call it, is the “B” in the ABVD and causes all kinds of lovely side effects, not the least of which is possible lung toxicity. I’ve been having more and more trouble with breathing lately (getting winded walking up stairs, etc…) As it that weren’t enough fun for now, my fingers alternate between being numb and unbearably itchy and I’ve developed all these little hive-like bumps all over my hands. They’re like mosquito bites, if the mosquitoes were on steroids and shooting meth. All of this seems to be courtesy of Bleo, so even more reason to celebrate its departure from my life (“thank you for everything you’ve done for me – now scram!!”)
It’s also another testament to the beauty of the second opinion. Dr. Matasar at Sloane Kettering was the one who mentioned studies that show that stopping Bleo after the 8th treatment has no real effect on overall cure/recurrance rates, and that by treatment number 8 you’ve gotten as much “bang for the buck” as you’re gonna get from the Bleo.
My doctor here in DC hadn’t yet heard of these studies and has never had a case before where he stopped the Bleo early, but was willing to defer to my request, based on Dr. Matasar’s opinion and a lung function test I had last week which showed “decreased diffusing capacity” (fancy doctor speak for “I can’t exhale as fully as before”). Score one more for being your own best advocate! Viva la revolucion! Yes We Can! Stick it to – oh, sorry, got carried away there.
Three more treatments to go and I would like to say that I can see the light of the end of the tunnel, but in keeping with the marathon metaphor, I feel like I’m hitting the wall. Like my legs are moving but I’m not really sure where I’m going. I feel feverish and nauseous, my thoughts are often fuzzy and jumbled and I generally feel like crap most of the time. I have lost track of when I’m hungry because I mostly just eat to try and get the horrible, rusty nail taste out of my mouth. I feel tired, two-dimensional and just not like myself. I have heard, more than once, that I will come out on the other side of this ordeal a different person, and for once, I’m afraid of what that means.
Maybe I feel more fragile because this weekend was the one-year anniversary of my mom’s death. Maybe it’s all that intense sadness coming out of Arizona and what that means for the country. Maybe it’s just that being poisoned every other week for five months eventually takes its toll on a girl.
But still, I am lucky. I know this and I keep repeating it like a mantra (or perhaps like a crazy person.) Lucky I have not vomited more. Lucky that I don’t have to have radiation. Lucky to have such a treatable form of cancer. Lucky that I’m not going to die.
But I also know if I wasn’t afraid somewhere in all of this, I wouldn’t be human. In fact I just read about these women who were preparing to do a fire walk across hot coals as part of some sort of leadership training ritual. All of the women were talking about how they were scared that they would get hurt, or chicken out halfway through, all except one. She was quiet and confident and didn’t talk about how scared she was...and she was the only who got 3rd degree burns on her feet. So there you go.
Despite the fear and anxiety, I keep reminding myself that this is curing me and that in a couple of months this will all be behind me. But I still wasn’t totally convinced. And then yesterday I got another one of those little signs from the universe that I love so much.
I was in the elevator at my doctor’s office, fresh off of another Neupogen shot. I was trying hard not to throw up, anxious to get back home and into my pajamas, and as much as I hate to admit this, feeling very sorry for myself. Then the doors opened on the 7th floor, and there she was: this feisty little woman in her 80’s who looked like Lena Horne, if Lena Horne was 4’11. She was wearing a red leather bomber jacket and her hair was all cute and fly, make-up was flawless -- she looked like sunshine with feet and I swear she practically radiated angelic light. As we descended toward the lobby, she started singing softly, using her cane to steady herself as she bopped along with the music. It was so contagious that everyone on the elevator smiled and a few others started bopping too. Then she got off on G2 and sashayed out the door.
The whole thing lasted about 20 seconds, but it was just what I needed. So thank you Lena Horne for reminding me that it’s really not that bad, that life is what you make it, and that it doesn’t matter what is on the other side of this, because if you can still face the world with a smile and a song, that’s half the battle.
It’s also another testament to the beauty of the second opinion. Dr. Matasar at Sloane Kettering was the one who mentioned studies that show that stopping Bleo after the 8th treatment has no real effect on overall cure/recurrance rates, and that by treatment number 8 you’ve gotten as much “bang for the buck” as you’re gonna get from the Bleo.
My doctor here in DC hadn’t yet heard of these studies and has never had a case before where he stopped the Bleo early, but was willing to defer to my request, based on Dr. Matasar’s opinion and a lung function test I had last week which showed “decreased diffusing capacity” (fancy doctor speak for “I can’t exhale as fully as before”). Score one more for being your own best advocate! Viva la revolucion! Yes We Can! Stick it to – oh, sorry, got carried away there.
Three more treatments to go and I would like to say that I can see the light of the end of the tunnel, but in keeping with the marathon metaphor, I feel like I’m hitting the wall. Like my legs are moving but I’m not really sure where I’m going. I feel feverish and nauseous, my thoughts are often fuzzy and jumbled and I generally feel like crap most of the time. I have lost track of when I’m hungry because I mostly just eat to try and get the horrible, rusty nail taste out of my mouth. I feel tired, two-dimensional and just not like myself. I have heard, more than once, that I will come out on the other side of this ordeal a different person, and for once, I’m afraid of what that means.
Maybe I feel more fragile because this weekend was the one-year anniversary of my mom’s death. Maybe it’s all that intense sadness coming out of Arizona and what that means for the country. Maybe it’s just that being poisoned every other week for five months eventually takes its toll on a girl.
But still, I am lucky. I know this and I keep repeating it like a mantra (or perhaps like a crazy person.) Lucky I have not vomited more. Lucky that I don’t have to have radiation. Lucky to have such a treatable form of cancer. Lucky that I’m not going to die.
But I also know if I wasn’t afraid somewhere in all of this, I wouldn’t be human. In fact I just read about these women who were preparing to do a fire walk across hot coals as part of some sort of leadership training ritual. All of the women were talking about how they were scared that they would get hurt, or chicken out halfway through, all except one. She was quiet and confident and didn’t talk about how scared she was...and she was the only who got 3rd degree burns on her feet. So there you go.
Despite the fear and anxiety, I keep reminding myself that this is curing me and that in a couple of months this will all be behind me. But I still wasn’t totally convinced. And then yesterday I got another one of those little signs from the universe that I love so much.
I was in the elevator at my doctor’s office, fresh off of another Neupogen shot. I was trying hard not to throw up, anxious to get back home and into my pajamas, and as much as I hate to admit this, feeling very sorry for myself. Then the doors opened on the 7th floor, and there she was: this feisty little woman in her 80’s who looked like Lena Horne, if Lena Horne was 4’11. She was wearing a red leather bomber jacket and her hair was all cute and fly, make-up was flawless -- she looked like sunshine with feet and I swear she practically radiated angelic light. As we descended toward the lobby, she started singing softly, using her cane to steady herself as she bopped along with the music. It was so contagious that everyone on the elevator smiled and a few others started bopping too. Then she got off on G2 and sashayed out the door.
The whole thing lasted about 20 seconds, but it was just what I needed. So thank you Lena Horne for reminding me that it’s really not that bad, that life is what you make it, and that it doesn’t matter what is on the other side of this, because if you can still face the world with a smile and a song, that’s half the battle.
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