Monday, August 21, 2006
Thursday, August 10, 2006
Reprieve
Monday I went kicking and screaming to my appointment for chemo. I was dreading it. In fact, I had a number of full blown "ugly cries" the 24 hours leading up to the appointment. I just didn't want to do it.
It turns out my body agreed. My white blood cell count was lower than it was two weeks ago. I shudder to think how low my white blood cell count went down after chemo II. Anyway, I got a week reprieve. I was so excited to have a week of feeling fairly human.
I talked to Johns Hopkins and my doc at Roswell and everyone agrees that taxol may not be worth the trouble for me. It may not increase my odds of no recurrence in the future. Though no one knows for sure as no one can agree on my exact diagnosis.
I'm feeling a bit sad these days...I could write a list of reasons why...cancer, chemo, moving, disappointment in certain people's lack of contact during this trying time--I don't want to mention any names...in-laws, keloid on my lymphnode scar, etc. The list goes on.
But, what I would rather do is mention what I'm grateful for.
I don't have to work.
I am half way done with chemo.
I have a beautiful house and stream in my backyard.
My kids have stayed healthy this summer.
Paul shaved his head to support me. Even though his hair is already growing back...I'm still proud of him!
We're going to the Caribbean in January.
We're celebrating our 15 year wedding anniversary Aug 24th.
I love my kids.
I have a very supportive family, especially my mom.
I'm going to an amusement park tomorrow with my kids. I couldn't go if I had chemo on Monday.
I look good in a scarf.
I don't have to shave my legs or pluck unwanted facial hair.
It could be worse.
I'm not addicted to caffeine anymore due to my repulsion at the smell of coffee.
I better stop now as I'm digressing and starting to whine. Oprah, I'm sure, would disapprove.
It turns out my body agreed. My white blood cell count was lower than it was two weeks ago. I shudder to think how low my white blood cell count went down after chemo II. Anyway, I got a week reprieve. I was so excited to have a week of feeling fairly human.
I talked to Johns Hopkins and my doc at Roswell and everyone agrees that taxol may not be worth the trouble for me. It may not increase my odds of no recurrence in the future. Though no one knows for sure as no one can agree on my exact diagnosis.
I'm feeling a bit sad these days...I could write a list of reasons why...cancer, chemo, moving, disappointment in certain people's lack of contact during this trying time--I don't want to mention any names...in-laws, keloid on my lymphnode scar, etc. The list goes on.
But, what I would rather do is mention what I'm grateful for.
I don't have to work.
I am half way done with chemo.
I have a beautiful house and stream in my backyard.
My kids have stayed healthy this summer.
Paul shaved his head to support me. Even though his hair is already growing back...I'm still proud of him!
We're going to the Caribbean in January.
We're celebrating our 15 year wedding anniversary Aug 24th.
I love my kids.
I have a very supportive family, especially my mom.
I'm going to an amusement park tomorrow with my kids. I couldn't go if I had chemo on Monday.
I look good in a scarf.
I don't have to shave my legs or pluck unwanted facial hair.
It could be worse.
I'm not addicted to caffeine anymore due to my repulsion at the smell of coffee.
I better stop now as I'm digressing and starting to whine. Oprah, I'm sure, would disapprove.
Friday, August 04, 2006
Johns Hopkins...I miss you
I've got to write about this last week, though I don't want to relive any part of it. I know that if I let enough time pass, my brain would shove the experience into the dark recesses of my mind as a course of self preservation.
As mentioned in an earlier post, my fantastic cancer team at Roswell Park, failed to mention that I needed a neulasta shot 24ish hours after my chemotherapy. The lack of which sent my blood into a nuclear meltdown...white blood cells low, platelets low, sodium high, blah, blah, blah. The chemo nearly killed me. Thank God, or anyone who will listen, that I didn't get an infection. Anyway, for chemo II they apologized profusely, got me the shot 24 hours later and gave me antibiotics...just in case. You see, my body wasn't ready for another dose. My blood was at the breaking point. What my expert team at the "renowned" Roswell Park Cancer Center, so good they weren't even in the top 52 cancer hospitals in the USNews best cancer hospital rating, what they FAILED to mention were the possible side effects of this shot. But, I don't blame them entirely, as the Neulasta website says ONLY 31% of patients have the particular side effect I was blessed with...bone crushing pelvis pain that emanated up my spine and throughout my skull. It was paralyzing. But, what was most distressing was my fear that what I was experiencing was a result of an infection that may kill me. I was writhing in pain while on oxycodin. Major narcotics only took the edge off. I called my team at the renowned Roswell Park where my Doc was off at a conference and the nurse practitioner said, "It's probably not an infection because you're on antibiotics. I don't know what to tell you. You could go to the emergency room, IF IT WILL MAKE YOU FEEL BETTER." You idiot...I went to a breast cancer support group at Gilda's Club and within 2 minutes the angelwomen told me what it was...the freaking Neulasta shot.
I can forgive the dumbasses for their error with chemo I, but leaving me stranded and in pain is intolerable. I'm a tough ass when it comes to pain too. I've endured a lot of it. In fact, I've choose pain in certain instances as a course of character building. Childbirth, long distance running, mountain climbing and third world living. But, pain in this instance is torture. Someone I loved once said to me..."You can't talk philosophy with a man on a rack". By God, you can't neglect a chemo patient in pain.
As mentioned in an earlier post, my fantastic cancer team at Roswell Park, failed to mention that I needed a neulasta shot 24ish hours after my chemotherapy. The lack of which sent my blood into a nuclear meltdown...white blood cells low, platelets low, sodium high, blah, blah, blah. The chemo nearly killed me. Thank God, or anyone who will listen, that I didn't get an infection. Anyway, for chemo II they apologized profusely, got me the shot 24 hours later and gave me antibiotics...just in case. You see, my body wasn't ready for another dose. My blood was at the breaking point. What my expert team at the "renowned" Roswell Park Cancer Center, so good they weren't even in the top 52 cancer hospitals in the USNews best cancer hospital rating, what they FAILED to mention were the possible side effects of this shot. But, I don't blame them entirely, as the Neulasta website says ONLY 31% of patients have the particular side effect I was blessed with...bone crushing pelvis pain that emanated up my spine and throughout my skull. It was paralyzing. But, what was most distressing was my fear that what I was experiencing was a result of an infection that may kill me. I was writhing in pain while on oxycodin. Major narcotics only took the edge off. I called my team at the renowned Roswell Park where my Doc was off at a conference and the nurse practitioner said, "It's probably not an infection because you're on antibiotics. I don't know what to tell you. You could go to the emergency room, IF IT WILL MAKE YOU FEEL BETTER." You idiot...I went to a breast cancer support group at Gilda's Club and within 2 minutes the angelwomen told me what it was...the freaking Neulasta shot.
I can forgive the dumbasses for their error with chemo I, but leaving me stranded and in pain is intolerable. I'm a tough ass when it comes to pain too. I've endured a lot of it. In fact, I've choose pain in certain instances as a course of character building. Childbirth, long distance running, mountain climbing and third world living. But, pain in this instance is torture. Someone I loved once said to me..."You can't talk philosophy with a man on a rack". By God, you can't neglect a chemo patient in pain.
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