Since I last posted, I had to have a bone tumor removed from my femur, and then Dr. Brien added a plate and rod up to the hip joint. That was in August or September. I have just seen Dr. Brien Monday this week. I told him my legs hurt all the time, I no longer take any pain killers except over the counter meds, he gave me Tylenol #3, just 20, to help me through this current pain. He referred me to a vascular surgeon, his sister, Heather Brien at Hoag. He is ordering an MRI of my entire left leg because he felt a lot of lumps and bumps.
He did some blood work and listened to my heart and chest, told me to take a deep breath, and then I remembered, as I doubled over in pain, I can't do that! It always hurts when I take a deep breath on the right side.
His office called and said my blood was crappy, platelets still low and that I apparently have some liver/pancreas and gall bladder problems because the stent in my biliary duct shifted, which is why I can't take a deep breath without pain.
Oh what fun cancer is!
Thursday, December 15, 2011
Sunday, May 29, 2011
Preparing to Fire my Doctor
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.
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.
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!
Saturday, February 26, 2011
5:45 am
I cannot believe I am up at this unreasonable hour. It starts promptly at about this time every morning. I am sleeping soundly, enjoying the last of my warm bed, the sun is just breaking through the clouds and and daylight just appearing. It's the part of living in this far away place that I like...until, of course CRIKIT wakes me up with her incessant kitty at sounding tap tap tap tap tap tap tap tap tap tap tap....Mommy mommy mommy it looks like outside,please come open the door so we can see you, get in your warm bed and say good morning and then meow until I am forced from bed to go get them breakfast.
Why can't I teach my animals to open doors, feed themselves. empty their own litter box and water themselves? How hard can it be? Molly gets excited when they wake up and scratch at the door....and god forbid I decide to move my shoes or grab my pants because I am COLD because THAT leads these frolicking furry pets to think that it the best of part of the day...time for Mom to get dressed in like 4 layers of clothes and take Molly out to the mountain to fun and play
My favorite part of Saturday is one thing....NO RADIATION toaday! My back still aches from yanking the side handle from my van off and landing about 3 feet from the van last week. Anyone want to volunteer a massage for my hurting back?
Still.....It's Saturday!
Why can't I teach my animals to open doors, feed themselves. empty their own litter box and water themselves? How hard can it be? Molly gets excited when they wake up and scratch at the door....and god forbid I decide to move my shoes or grab my pants because I am COLD because THAT leads these frolicking furry pets to think that it the best of part of the day...time for Mom to get dressed in like 4 layers of clothes and take Molly out to the mountain to fun and play
My favorite part of Saturday is one thing....NO RADIATION toaday! My back still aches from yanking the side handle from my van off and landing about 3 feet from the van last week. Anyone want to volunteer a massage for my hurting back?
Still.....It's Saturday!
Tuesday, February 22, 2011
After first day of radiation...
I am home, but got sick on my way back home. At first, I felt good, well not great, but I felt hungry, so I ate, and then my ride wanted to stop at the grocery store so I went to get a roll of quarters for laundry and practically knocked over a guy getting to the bathroom quick enough to avoid a "clean-up on aisle 2"...lol.
I tried eating a few small bites of food at home but once again did not feel well and laid down in a warm bath for about 1/2 hour. That felt good. Then I tried some butternut squash soup from Laura and Paul....just a few bites, then I waited. About 30 minutes later I tried another couple bites with a half a slice of bread. That was it for me...not a lot for a whole day for eating, but I will do better tomorrow.
What I am most worried about is the energy and life sucking effect that radiation has on me. It also screws with my organs near the area of the tumor.
It's times like this that I wish I had someone to put their arms around me through the night. Someone to put comforting arms around me at night to let me know I am safe, for the next few hours. Molly frequently jumps up and gets in front of me and I am quite surprised to find a big warm hairy dog in bed with me, however, it's not exactly what I am looking for....but my best friend does try, but she's still a dog.
Thanks for reading. I'll keep up with the posting with the rest of my battle with sarcoma.
One thing is certain....SARCOMA DOES NOT DEFINE ME!
I tried eating a few small bites of food at home but once again did not feel well and laid down in a warm bath for about 1/2 hour. That felt good. Then I tried some butternut squash soup from Laura and Paul....just a few bites, then I waited. About 30 minutes later I tried another couple bites with a half a slice of bread. That was it for me...not a lot for a whole day for eating, but I will do better tomorrow.
What I am most worried about is the energy and life sucking effect that radiation has on me. It also screws with my organs near the area of the tumor.
It's times like this that I wish I had someone to put their arms around me through the night. Someone to put comforting arms around me at night to let me know I am safe, for the next few hours. Molly frequently jumps up and gets in front of me and I am quite surprised to find a big warm hairy dog in bed with me, however, it's not exactly what I am looking for....but my best friend does try, but she's still a dog.
Thanks for reading. I'll keep up with the posting with the rest of my battle with sarcoma.
One thing is certain....SARCOMA DOES NOT DEFINE ME!
Radiation
Sorry for the long time without writing. I was so tired of complaining and sounding so pitiful. But I got a few notes from people saying they missed my blog, so I decided to start writing again.
So apparently the clinical trial I was on was not working because I have a significant new tumor in the site of the primary tumor. They decided to let me do the radiation here near my new apartment. For right now they are saying it will be 10 weeks of daily radiation...well, except when the office is closed, like Saturday and Sunday.
Radiation the last time was quite hard on me, it made me sicker than chemo. I had physical problems as well, so I am afraid of radiation. I know its stupid, but I keep hoping someone has made a mistake and I actually don't have cancer. You see, there are stages after getting the news you have cancer. I started writing the order of what I think the stages are when it dawned on me, I don't the order! I started with shock and emotional breakdown. Then I went to denial. Then I went to the part I thought I would be the one that would survive and never have any sign of cancer again. Then I went back to denial again, then emotional breakdown and now I seem to go day to day with one the above.
So, my next post will be in about 4 hours. After I have gone to radiation (9 different directions of radiation) and promise to write regularly again, if you will promise to read my blog. Also, comments on my blogs are always welcomed!
Love you all! Keep me in your thoughts at 2:30 today!
Sandy
So apparently the clinical trial I was on was not working because I have a significant new tumor in the site of the primary tumor. They decided to let me do the radiation here near my new apartment. For right now they are saying it will be 10 weeks of daily radiation...well, except when the office is closed, like Saturday and Sunday.
Radiation the last time was quite hard on me, it made me sicker than chemo. I had physical problems as well, so I am afraid of radiation. I know its stupid, but I keep hoping someone has made a mistake and I actually don't have cancer. You see, there are stages after getting the news you have cancer. I started writing the order of what I think the stages are when it dawned on me, I don't the order! I started with shock and emotional breakdown. Then I went to denial. Then I went to the part I thought I would be the one that would survive and never have any sign of cancer again. Then I went back to denial again, then emotional breakdown and now I seem to go day to day with one the above.
So, my next post will be in about 4 hours. After I have gone to radiation (9 different directions of radiation) and promise to write regularly again, if you will promise to read my blog. Also, comments on my blogs are always welcomed!
Love you all! Keep me in your thoughts at 2:30 today!
Sandy
Tuesday, January 11, 2011
FDA Recalls
I am back having chemo. It has been six weeks since my last chemo, so since the cut off is six weeks, it had to go yesterday, which it did. My blood barely cleared the requirements. I was so very sick last night. The nausea drugs that I had been taking before, Emend and Sancusco Patch have been discontinued, or recalled by the FDA...makes me wonder about the safety of those drugs that I took everytime I had chemo since April.
So I laid in a tub last night, sick sick sick from the effects of chemo. I feel horrible and the doctor was rude to me when he came in the room. First, I waited two hours to see the secondary doctor, Dr. Handifer. He came in and because I had gotten a prescription filled by a doctor 215 miles away 30 days before one time, he said he couldn't write the script for my meds because I have too many doctors. I was so upset. I told him, the guy I saw up north was a GP and was a one time doctor just for the meds, and Chawla's office told me to go there until I got back down south. He left me in the room for another hour because he had a more important patient....I guess I am not important.
Well, I have to take a shower and head back to the doctors to stop chemo.
Later!
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