It was deja vue all over again. My oncologist sitting in front of me with a really perplexed look on his face. "Your counts were low two weeks ago and so we didn't do chemo, figuring they'd rebound but they haven't. In fact, they are lower than last week, down to .5. Your liver enzymes are also elevated again, which is unusual. Honestly, I really don't know why this is happening."
Bwwwwwwwwwwwwwwwwww. I blew out a deep, long breath and waited for him to continue, not loving that this was the second time my too-honest-for-his-own-good oncologist had told me that my situation was "unique" and "unusual" for his 30+ years on the job. They'd been huddling outside the office for a good 20 minutes, waiting for the input from my hematologist, and I was nervous about where this was going. [Little did she know, the worst was yet to come...]
"So, we are going to need to do a bone marrow biopsy to see what is going on. We'll schedule that for tomorrow and get this all figured out."
A BONE MARROW BIOPSY? Are you fucking kidding me?
I got teary, again, and sat there for a minute trying to collect myself and not go into full panic mode.
[Bone marrow biopsy means they are looking for something like leukemia, which can occur as a result of chemo. Shit, shit, shit! What if I have leukemia? What the hell am I going to do? There is NO WAY I can handle anything else, especially not leukemia. I am done. Forget it, I am quitting chemo. What does the taxol get me? Probably nothing. Shit, what if I have LEUKEMIA? Shit, shit, shit!]
And then got up and left, feeling incredibly numb.
Nick had gone up north with the kids for a week, my sister wasn't coming in until evening the next day and that put her in Ann Arbor after the biopsy. I had to face the procedure without Nick, and ask my dear friend Jenn to put off her family vacation to take me. And what if something was really wrong? What then?
So much of what wears you down in being ill, dealing with doctors, dealing with health issues is the not knowing. Not knowing how things will turn out, not knowing what the treatment will be like or how your body will handle it, not knowing what is happening when things go very, very wrong. The dreaded words are "X is happening and we don't know why." I think of my friend Ashley's stroke and my friend of a friend Maria's TBI that is causing new problems. I think of my friend Beth who deserves to get her zing back and my dear friend Anne in London who has just started on the path I began back in March. So fragile are these experiences where so much hangs on so many factors. It's easy to get frustrated at the doctor's not knowing or be angry with your body, but it's really just the reality of not knowing that leaves you paralyzed.
My sister and I also ventured into the conversation about what my longer term stats look like. I've never gone there, too scared to start googling about and the medical community is reluctant to raise those issues with patients (thank goodness) unless prompted by the patient's need to know. But Lisa had done her homework and so we started talking about what this means going forward. Basically, if I make it 5 years without a new cancer, I am in great shape. If not, not so much. Triple negative cancer has a higher recurrence spike, but if you can get through those five years, your future looks bright. It's a more aggressive cancer but responds really well to chemo. Five years out and you may live to be a hundred. It's the not knowing that eats you up.
Nick and the kids came back from camp on Friday night while I was still waiting for my tests to return and, in some ways, thinking about the five year frame gave me a new lens on things. We'd be talking about college and it would hit me that maybe I won't be here to see David go to college or Ava graduate from highschool and I would be awash in tears. I have never allowed myself to go there because I am convinced that everything is going to be fine. It is. But it makes me think a lot about what the next five years looks like for me, the way I want to live my life, the choices I make about work, where I live, who I am friends with, how I treat my body. Sometimes it's the not knowing that spurs you forward.
After a weekend of held breath, my bone marrow tests showed no signs of leukemia (which my oncologist said would have been really unusual (that word again!) at this stage of the game). My Absolute Neutraphil Count went through the roof thanks to the neupagin and my liver enzymes are going down. I have a meeting with my Infectious Disease doc next week to talk about the possibility of a virus and to see what can be done if it happens again. My oncology doc switched me from 4 sessions of big Taxol to 12 weekly sessions of smaller Taxol so it's easier on my bod and means I get to go to Providence for my sweet sister-in-law's wedding and I am hoping a conference in San Fran. I am negotiating now, damn it. Small wins while you can get them while living in the land of not knowing make a difference.
And, am watching my own personal shot clock get reset and run down, reset and run down.
12, 11, 10, 9, 8, 7, 6, 5, 4, 3, 2...1.
It's the not knowing that...
One girl's way of working out her experience of breast cancer through rapid-fire blogging. What you see is what you get. Me, relatively unedited and not always composed. *The title of this blog is an homage to The Flaming Lips song "Yoshimi Battles Pink Robots", one our family grooves to in the car. ['Cause she knows that/it'd be tragic/if those evil robots win/I know she can beat them]
Showing posts with label delay in treatment. Show all posts
Showing posts with label delay in treatment. Show all posts
Friday, September 9, 2011
Friday, August 19, 2011
Little Did They Know...
Years ago, my mother, Nick and I went to go see the film Shackleton's Adventure, the story Sir Ernest Shackleton's now-legendary 1914-1916 British Imperial Trans-Antarctic Expedition. It's an amazing film, narrated by Kevin Spacey who uses a VERY SERIOUS, British-ish voice that just tells you that SHIT IS GOING TO HAPPEN. And it does, brothers and sisters, yes it does.
A bit of description from the internetz: After five months of journeying, 28 men became stranded as their ship became trapped in pack ice. After eight months of waiting through the Antarctic winter, by October, encroaching pack ice crushed the ship like an eggshell. Needless to say, the story gets worse from there...much worse. Spacey peppers his narration continuously with ominous lines like "little did they know, the worst was yet to come."
We walked out at the end of the film, each of us completely exhausted from watching the relentless hell these 28 men had to endure. Exhausted and amazed at their resilience.
Not to put going through chemo on the same level as enduring the Antartic in the dead of winter, but sitting in the dr.'s office on Tuesday, I felt Kevin Spacey's voice in my head, And little did they know, the worst WAS YET TO COME. (duh! duh! DUH!).
So this week, we celebrated the halfway done mark and were supposed to launch into treatment #5 and a switch to Taxol. The last two treatments on AC have been pretty sucky from a feeling-the-effects perspective and so I am simultaneously happy to move on to a new drug and completely petrified of the side effects. Eyebrows and eyelashes? Gone. Feeling in fingers and toes?...hmmm, well lots of folks get neuropathy and about 5% never regain sensation again. Fingernails? Probably going to get really ugly and maybe fall off. And how about the delivery of the drug? Well, about 10% have a pretty serious allergic reaction sitting in the chair.
I sat there thinking about the risks and the gambles. I sat there thinking "I only have four more of these left and then I am done". I sat there and thought that my vanity and love of the use of my hands means something to me. I sat there and thought about the worst being yet to come. And then I realized that the worst part is not having a choice. You are in it. It's done. You move forward. The other options (a 30% chance of getting breast cancer somewhere else in your body = metastasized cancer) are not simply not palatable.
So instead you go out for dinner and drinks with wonderful friends to celebrate the midpoint. You laugh and cry a little bit with these friends, you tell stories about what life was like before and after this happened and you realize that it's worth every single bit to get to stay around to be with such wonderful people.
Friends and loved ones lift you through these times. I have felt angry, I have felt sad and depressed and more than a little lost, but never once, not once, have I felt alone. And that is pure gold.
Today I went in for the infusion only to be told that my counts are too low and that I am going to need to delay for some yet-to-be-determined period of time (likely a week). The thought of delaying puts me in a really bad place (more time? I want to get this DONE) but the idea of having a somewhat-ok-feeling week with my husband (and no kids!) might be something that I really need.
Yes, the worst, in some ways, may be yet to come. I hope not, but I won't know until I get there. And, Shackleton's crew of 28 men? They all made it home, every one. Working together, they pulled each other through. If they could manage, with your help, somehow I think I can too.
A bit of description from the internetz: After five months of journeying, 28 men became stranded as their ship became trapped in pack ice. After eight months of waiting through the Antarctic winter, by October, encroaching pack ice crushed the ship like an eggshell. Needless to say, the story gets worse from there...much worse. Spacey peppers his narration continuously with ominous lines like "little did they know, the worst was yet to come."
We walked out at the end of the film, each of us completely exhausted from watching the relentless hell these 28 men had to endure. Exhausted and amazed at their resilience.
Not to put going through chemo on the same level as enduring the Antartic in the dead of winter, but sitting in the dr.'s office on Tuesday, I felt Kevin Spacey's voice in my head, And little did they know, the worst WAS YET TO COME. (duh! duh! DUH!).
So this week, we celebrated the halfway done mark and were supposed to launch into treatment #5 and a switch to Taxol. The last two treatments on AC have been pretty sucky from a feeling-the-effects perspective and so I am simultaneously happy to move on to a new drug and completely petrified of the side effects. Eyebrows and eyelashes? Gone. Feeling in fingers and toes?...hmmm, well lots of folks get neuropathy and about 5% never regain sensation again. Fingernails? Probably going to get really ugly and maybe fall off. And how about the delivery of the drug? Well, about 10% have a pretty serious allergic reaction sitting in the chair.
I sat there thinking about the risks and the gambles. I sat there thinking "I only have four more of these left and then I am done". I sat there and thought that my vanity and love of the use of my hands means something to me. I sat there and thought about the worst being yet to come. And then I realized that the worst part is not having a choice. You are in it. It's done. You move forward. The other options (a 30% chance of getting breast cancer somewhere else in your body = metastasized cancer) are not simply not palatable.
So instead you go out for dinner and drinks with wonderful friends to celebrate the midpoint. You laugh and cry a little bit with these friends, you tell stories about what life was like before and after this happened and you realize that it's worth every single bit to get to stay around to be with such wonderful people.
Friends and loved ones lift you through these times. I have felt angry, I have felt sad and depressed and more than a little lost, but never once, not once, have I felt alone. And that is pure gold.
Today I went in for the infusion only to be told that my counts are too low and that I am going to need to delay for some yet-to-be-determined period of time (likely a week). The thought of delaying puts me in a really bad place (more time? I want to get this DONE) but the idea of having a somewhat-ok-feeling week with my husband (and no kids!) might be something that I really need.
Yes, the worst, in some ways, may be yet to come. I hope not, but I won't know until I get there. And, Shackleton's crew of 28 men? They all made it home, every one. Working together, they pulled each other through. If they could manage, with your help, somehow I think I can too.
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