Screaming into the Wind
April 13, 2010
I am in cancer-limbo and I hate this place.
So let's start at the beginning. I am in a study [Phase 3] which is studying survival rates and side effects of Armidex and Aromasin. I am in the Aromasin arm of this study. Since Nurse Halley left the protocol team, follow up has fallen by the wayside. I am no longer asked to fill her in about the side effects. However, I am required to have a bone density test yearly. I never did this last year, and so I headed to the hospital on April 7th for a bone density scan. Bone density scans are a piece of cake. You don't even have to undress if you aren't wearing metal. Zip, zip the machine whirs and you are done. Since I was already in the building, I then headed up to the ninth floor [Yes, pushing the 9 in the elevator still makes my stomach queezy] to have some blood drawn. This is the new routine so that Dr. Roger has the results for my follow-up appointments.
I had a new phlebotomist this time, but she did reasonably well, and I was quickly on my way home. In the car, with the windows thrown open I made my self a promise. I would NOT check the numbers online. Instead I would wait until the day of my appointment, a full seven days later.
And with that, I spent the week working on files and practicing.
In fact, I never even reminded my husband I had a follow up appointment with Dr. Roger. Since he isn't around on Tuesday, I got up on my own and headed to the hospital. But first, I checked the online lab results. OMG! My 27.29 had risen from 38 to 107. My heart sank, and I headed off. On the way to the hospital, there was a Lexus standoff. They had collided and refused to move. CLicking their cell phone cameras, and yelling at each other and the other drivers. Finally the police arrived, and forced the "special" ones to to move their cars. Then in the garage, lots of oversized cars treated the two way ramps as their own private speedways. What a nightmare! I was actually late for my appointment. Me! Late? That just doesn't ever happen to me.
The staff moved into high speed the minute I arrived. Vitals, check. Payment, wait. Let us get you into that room. Dr. Roger appeared. Of course, I apologized profusely. He smiled and said "Don't worry. A woman appeared a week early, and she was delighted that I could slip her right in." And then we got down to business.
"How are you," he asked, looking at me directly. Well, I am not going to include the full dialog, but I outlined how I have been feeling. He did the physical exam, and stated that he didn't feel anything. With my shirt back on, we continued. Now he swiveled and reviewed my online records. His concerns, the blood markers, loss of appetite, weight loss [more than usual in one month], frequent pain and pain when lying down. Again, he turned to look at me directly. "This is capricious behavior," he said quietly. "You have tumor activity. I suspect that you have tumors on your spine that are pressing against your nerves." And then he concluded, "But, we will have to see."
As I left, I was told to stop and have a new blood draw, and that Dr. Lange's PA, Nurse Lauren, would be in touch to schedule scans.... bone, PET, and MRI.
Like clockwork, the next morning, the phone rang. A conference call to schedule the scans. Wow. Walter explained that the two nuclear reactors that provide the required isotopes were offline for maintenance and no bone scans until the middle of May! And then we scheduled the PET and MRI. And now I learned that I was actually getting two MRI's... one for my torso and one for my brain. WHAT? My brain? I didn't even mention my headaches or the dizziness. _sigh_
The next morning, I logged onto PatientSite and my damn blood marker was up yet another 11 points. Within an hour of seeing this number, the phone rang. Walter was calling back. I was now eligible for a "triage" isotope; the reserve isotopes for special patients. NO NO NO! I don't want to be a triage patient.
The hardest part of this is, well, I can't tell anyone. If I move into Stage IV, I have no plans to tell anyone. Not my family, not my friends, not my colleagues, no one except my husband and kid. I can't stand the pity in people's eyes. Only recently have people begun to forget that they thought I was going to die.
And so, I have already decided that I keep my mouth shut unless we are talking brain or major organs. And then telling people will be the least of my worries. And so, I am scared all by myself. No one to talk with. No one to support me. For once, I feel really lonely.
I am in cancer-limbo and I hate this place.
So let's start at the beginning. I am in a study [Phase 3] which is studying survival rates and side effects of Armidex and Aromasin. I am in the Aromasin arm of this study. Since Nurse Halley left the protocol team, follow up has fallen by the wayside. I am no longer asked to fill her in about the side effects. However, I am required to have a bone density test yearly. I never did this last year, and so I headed to the hospital on April 7th for a bone density scan. Bone density scans are a piece of cake. You don't even have to undress if you aren't wearing metal. Zip, zip the machine whirs and you are done. Since I was already in the building, I then headed up to the ninth floor [Yes, pushing the 9 in the elevator still makes my stomach queezy] to have some blood drawn. This is the new routine so that Dr. Roger has the results for my follow-up appointments.
I had a new phlebotomist this time, but she did reasonably well, and I was quickly on my way home. In the car, with the windows thrown open I made my self a promise. I would NOT check the numbers online. Instead I would wait until the day of my appointment, a full seven days later.
And with that, I spent the week working on files and practicing.
In fact, I never even reminded my husband I had a follow up appointment with Dr. Roger. Since he isn't around on Tuesday, I got up on my own and headed to the hospital. But first, I checked the online lab results. OMG! My 27.29 had risen from 38 to 107. My heart sank, and I headed off. On the way to the hospital, there was a Lexus standoff. They had collided and refused to move. CLicking their cell phone cameras, and yelling at each other and the other drivers. Finally the police arrived, and forced the "special" ones to to move their cars. Then in the garage, lots of oversized cars treated the two way ramps as their own private speedways. What a nightmare! I was actually late for my appointment. Me! Late? That just doesn't ever happen to me.
The staff moved into high speed the minute I arrived. Vitals, check. Payment, wait. Let us get you into that room. Dr. Roger appeared. Of course, I apologized profusely. He smiled and said "Don't worry. A woman appeared a week early, and she was delighted that I could slip her right in." And then we got down to business.
"How are you," he asked, looking at me directly. Well, I am not going to include the full dialog, but I outlined how I have been feeling. He did the physical exam, and stated that he didn't feel anything. With my shirt back on, we continued. Now he swiveled and reviewed my online records. His concerns, the blood markers, loss of appetite, weight loss [more than usual in one month], frequent pain and pain when lying down. Again, he turned to look at me directly. "This is capricious behavior," he said quietly. "You have tumor activity. I suspect that you have tumors on your spine that are pressing against your nerves." And then he concluded, "But, we will have to see."
As I left, I was told to stop and have a new blood draw, and that Dr. Lange's PA, Nurse Lauren, would be in touch to schedule scans.... bone, PET, and MRI.
Like clockwork, the next morning, the phone rang. A conference call to schedule the scans. Wow. Walter explained that the two nuclear reactors that provide the required isotopes were offline for maintenance and no bone scans until the middle of May! And then we scheduled the PET and MRI. And now I learned that I was actually getting two MRI's... one for my torso and one for my brain. WHAT? My brain? I didn't even mention my headaches or the dizziness. _sigh_
The next morning, I logged onto PatientSite and my damn blood marker was up yet another 11 points. Within an hour of seeing this number, the phone rang. Walter was calling back. I was now eligible for a "triage" isotope; the reserve isotopes for special patients. NO NO NO! I don't want to be a triage patient.
The hardest part of this is, well, I can't tell anyone. If I move into Stage IV, I have no plans to tell anyone. Not my family, not my friends, not my colleagues, no one except my husband and kid. I can't stand the pity in people's eyes. Only recently have people begun to forget that they thought I was going to die.
And so, I have already decided that I keep my mouth shut unless we are talking brain or major organs. And then telling people will be the least of my worries. And so, I am scared all by myself. No one to talk with. No one to support me. For once, I feel really lonely.
posted by *susan* at
9:15 PM
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