I am so ready to fire my oncologist's office. Not really the doctor himself, but his staff.
I think they know I am upset because they welcome me, and treat me like a queen....I'm never treated like this. The doctor gets me cooffee and offers me lunch.
He tells me how lucky I am to get into this new clinical trial run by Handifer. I am not impressed. He says he wants me to go see Dr. Brien for the tumor on the right side. He is sticking to the story that I need to go see Brien, so I am going there. He offers to pay for two nights at the hotel with Vicki (just give her the receipt). I am not doing that. I am mad.
I am angry, confused, wondering what they have done to my body all this past year! I know when I get to Brien, I will get Dr. Forcsher....I have heard of him.
The doctor gets the scan and MRI and doesn't like them, he wants the ones from his office. I told him I was leaving to see Dr. Brien and will talk to him later. I again noticed the weird new file for me...I thinking that they are amending it. Lucky me, I have a blog that I wrote that has the history from my point of view.
Sunday, May 29, 2011
Update for three months! Arrrggghhhhh!
Wow. I did not realize it has been months since I wrote last. A lot has happened. I was doing radiation, but that is all over now. I had a follow-up scan with Chawla's office and they scared me. Instead of saying that the tumors in my right buttock were "stable" as usual, this time I heard Dr. Chawla say that he saw a definite progression of my disease in my right muscle, right above the knee.
He examined me and asked if I could feel it. When he was pushing in, I thought, okay maybe, but I really didn't feel anything much...just discomfort from him poking me. Dr. Chawla and Vicki had me sign paperwork for a new clinical trial that was two days a week. Called EI, or Eribulin. I read up on it and I had to agree to get it and show up every week. They said I had to wait to come back till 21 days had passed since radiation and I had to present with a good blood test.
I went home, and had a blood test about a week later. My blood work was not good. So no clinical trial. A week later, again no good blood....platelets just aren't behaving. Doctor Chawla wants me to come down and sign for a new clinical trial, which requires 3 days a week....every other day! They can't fax the paperwork and I can't find it online, but apparently, it doesn't screw with my platelets, and it will be a good one for me, but what a commitment I have to make! Monday, Wednesday and Friday every week, for 4 to 5 hours a day, for a minimum of 4 months.
Finally I have a good blood work and I get ready to head down for my first session.
I get an hotel for a week at the Hampton Inn in Carson. I went to go get Kathy to be with me. And I had to bring Molly too. I couldn't expect someone to just watch her for me. I walk in on Monday, bright and early. Vicki, in her usual bad mood says what'you doing here? I'm like....I had good blood, you said get a hotel for a week, I'm starting the new chemo! She looks at me like I am crazy and says you haven't even signed the paperwork yet.
Vicki had tells me on the phone that "maybe they made a mistake"....I'm freaked out....what do you mean mistake????? I asked. She said the tumors we saw on the right buttock have melted into cysts, so your cancer might be gone. I'm confused!....what about the bone marrow and the right side leg that could have surgery with major complications to get that lesion out with clear margins. I had visions of them amputating my right leg above the knee. And with this news, I would think they would be a little more compassionate.
So I go in to see Chawla and when I questioned him about the trial he said "don't you want me to be sure?" Hello, YES, I want him to be sure.
I had to come back the following day. Doctor Hendifer meets me in the waiting area...the lobby to tell me that I only had cysts all along, no cancer, and that I should be happy.
I saw the doctor and told him what Vicki said, then what Handifer said and Dr. Chawla says that this whole time I was being treated for the residual tumor on my left side. He tells me he want s to pay for my hotel room because of all the misconconfusion. He even started to reach for his wallet.
I don't want to cut ties with this doctor, but I am definitely going to remember that he treated me for a year with Yondelis and radiation all to find out....I didn't have a metastates to begin with!
He examined me and asked if I could feel it. When he was pushing in, I thought, okay maybe, but I really didn't feel anything much...just discomfort from him poking me. Dr. Chawla and Vicki had me sign paperwork for a new clinical trial that was two days a week. Called EI, or Eribulin. I read up on it and I had to agree to get it and show up every week. They said I had to wait to come back till 21 days had passed since radiation and I had to present with a good blood test.
I went home, and had a blood test about a week later. My blood work was not good. So no clinical trial. A week later, again no good blood....platelets just aren't behaving. Doctor Chawla wants me to come down and sign for a new clinical trial, which requires 3 days a week....every other day! They can't fax the paperwork and I can't find it online, but apparently, it doesn't screw with my platelets, and it will be a good one for me, but what a commitment I have to make! Monday, Wednesday and Friday every week, for 4 to 5 hours a day, for a minimum of 4 months.
Finally I have a good blood work and I get ready to head down for my first session.
I get an hotel for a week at the Hampton Inn in Carson. I went to go get Kathy to be with me. And I had to bring Molly too. I couldn't expect someone to just watch her for me. I walk in on Monday, bright and early. Vicki, in her usual bad mood says what'you doing here? I'm like....I had good blood, you said get a hotel for a week, I'm starting the new chemo! She looks at me like I am crazy and says you haven't even signed the paperwork yet.
Vicki had tells me on the phone that "maybe they made a mistake"....I'm freaked out....what do you mean mistake????? I asked. She said the tumors we saw on the right buttock have melted into cysts, so your cancer might be gone. I'm confused!....what about the bone marrow and the right side leg that could have surgery with major complications to get that lesion out with clear margins. I had visions of them amputating my right leg above the knee. And with this news, I would think they would be a little more compassionate.
So I go in to see Chawla and when I questioned him about the trial he said "don't you want me to be sure?" Hello, YES, I want him to be sure.
I had to come back the following day. Doctor Hendifer meets me in the waiting area...the lobby to tell me that I only had cysts all along, no cancer, and that I should be happy.
I saw the doctor and told him what Vicki said, then what Handifer said and Dr. Chawla says that this whole time I was being treated for the residual tumor on my left side. He tells me he want s to pay for my hotel room because of all the misconconfusion. He even started to reach for his wallet.
I don't want to cut ties with this doctor, but I am definitely going to remember that he treated me for a year with Yondelis and radiation all to find out....I didn't have a metastates to begin with!
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