I went in Thursday morning for my second biopsy. The surgeon went for the same spot as he did last time, the base of my neck. Hopefully he got a good enough sample for the pathology to be done. Unfortunately the effected node he had to remove this time was a little deeper in my neck then the last one, but since it was in the same area, he was able to make the incision at the same place. So I won't have another scar. Recovery hasn't been as easy as the last time. I developed a fever along with swelling and redness on my chest Friday morning and spent most of last night in the ER getting it checked out. They are guessing that I have a very slight infection and put me on some antibiotics. Im much better already, the fever is gone as well as most of the redness and swelling.
My next appointment is Sept 3rd with my local oncologist. Assuming the pathology come back as expected on the biopsy we will set up a treatment schedule. I imagine my first round of the new chemo will begin Sept 8 or 9.
Saturday, August 28, 2010
Thursday, August 12, 2010
August 11th - Consultation at Memorial Sloan Kettering
Yesterday was my big day at the big hospital. My stepfather drove me, my mom and husband down to NYC for my appointment.
I have to say that for having a reputation of being a big prestigious hospital, it didn't feel that way one bit to me. And I mean that is a good way. It was very compartmentalized. Once I got off the elevator and onto my doctor's floor, it actually seemed like an average doctor's office. I guess I was picturing herds of people waiting and taking numbers like at a deli counter. But the waiting room was small and everything moved smoothly. I hardly waited at all for the doctor which I wasn't expecting and all of the staff seemed very nice.
Once the doctor came in, everything went smoothly with very little surprises. I had a lot of time to do research and nothing that the doctor said was unexpected. The doctor herself was very young, which can be a good thing or a bad thing depending on how you look at it. She was very easy to talk to and willing to explain things thoroughly, never making you feel rushed.
So here is the plan as of right now. I have to have another biopsy done. The reason for this is they want to be certain that the cancer there now is still Hodgkin's and hasn't become a different type of lymphoma. This will be done locally, hopefully by the same surgeon that did my first biopsy.
Assuming it still is Hodgkin's (and the doctor is pretty sure it is) the next step will be more chemo. ICE is my new chemo acronym. This chemo regimen is really intense and it should only take about a month and a half to complete. The chemo will be done locally as well.
Immediately following the ICE chemo, I will have a stem cell transplant. This may be done locally or at MSKCC (hopefully at MSKCC, if I get my way). The whole point of a stem cell transplant is that it allows the doctor's to give extremely strong chemo that your body would normally not be able to withstand. Basically they will first collect my stem cells and store them. Then I will be hospitalized in a sterilized environment and they will give me a large amount of chemo which will destroy my immune system. After the chemo treatment, they will give me back my stored stem cells and my body will slowly get it's immune system back. It takes about three weeks for the stem cell transplant.
I've got a long difficult road ahead. But I have faith in God and very supportive family and friends to get me through. Thank you all for being there for me, all of the little things you do mean so much to me. Your prayers and encourgement help me keep a positive attitude and help me keep my faith as well.
I have to say that for having a reputation of being a big prestigious hospital, it didn't feel that way one bit to me. And I mean that is a good way. It was very compartmentalized. Once I got off the elevator and onto my doctor's floor, it actually seemed like an average doctor's office. I guess I was picturing herds of people waiting and taking numbers like at a deli counter. But the waiting room was small and everything moved smoothly. I hardly waited at all for the doctor which I wasn't expecting and all of the staff seemed very nice.
Once the doctor came in, everything went smoothly with very little surprises. I had a lot of time to do research and nothing that the doctor said was unexpected. The doctor herself was very young, which can be a good thing or a bad thing depending on how you look at it. She was very easy to talk to and willing to explain things thoroughly, never making you feel rushed.
So here is the plan as of right now. I have to have another biopsy done. The reason for this is they want to be certain that the cancer there now is still Hodgkin's and hasn't become a different type of lymphoma. This will be done locally, hopefully by the same surgeon that did my first biopsy.
Assuming it still is Hodgkin's (and the doctor is pretty sure it is) the next step will be more chemo. ICE is my new chemo acronym. This chemo regimen is really intense and it should only take about a month and a half to complete. The chemo will be done locally as well.
Immediately following the ICE chemo, I will have a stem cell transplant. This may be done locally or at MSKCC (hopefully at MSKCC, if I get my way). The whole point of a stem cell transplant is that it allows the doctor's to give extremely strong chemo that your body would normally not be able to withstand. Basically they will first collect my stem cells and store them. Then I will be hospitalized in a sterilized environment and they will give me a large amount of chemo which will destroy my immune system. After the chemo treatment, they will give me back my stored stem cells and my body will slowly get it's immune system back. It takes about three weeks for the stem cell transplant.
I've got a long difficult road ahead. But I have faith in God and very supportive family and friends to get me through. Thank you all for being there for me, all of the little things you do mean so much to me. Your prayers and encourgement help me keep a positive attitude and help me keep my faith as well.
Monday, August 2, 2010
August 2nd - The Nightmare Continues
I had my post chemo PET scan last Wednesday. Today was the big day at my oncologist's office, were I expected to haggle over whether or not to do radiation. Well, that never took place. You know it's going to go bad when the doctor starts off by saying, "I was thinking all weekend how to tell you this..."
Yeah, it went that well.
My worst nightmare for today came true. My cancer is "Refractory". In other words, it is now chemo resistant. Not only is the original mass in my chest growing since chemo ended, but the one in my neck has come back to life. AND the icing on the cake, now there is a third area, in the other side of my chest, that has a cancerous tumor growing.
This is how my doc explained what happened. Basically my chemo was going along quite well from what we could tell. The PET scan I had in May (2/3 through chemo) showed a significant shrink in the tumor in my chest and nothing at all left in my neck. Which would lead to the conclusion that the chemo was working well. However, at some point, a rouge cell got smart. It mutated to become resistant to the chemo that I was receiving. This happens to 1 in 10 people in my shoes, yeah I'm that lucky.
To make matters worse, the doctor said that it's possible that the third (new area) isn't Hodgkin's at all and could be some other kind of Lymphoma.
So the next step you ask? Well my doctor, as nicely as she could, divorced me. I need a larger hospital with a doctor specializing in Refractory Lymphoma to decide what should be done. The good news is, I already had a second opinion set up with a doctor at Memorial Sloan Kettering for the radiation decision. However, when they got my final PET scan, they decided to transfer my case to another of their doctors. So I still don't have an appointment yet, but I was promised it would be in the next two weeks.
Meanwhile, I am a wreck. The cancer is just growing and all I can do is sit here and twiddle my thumbs! I HATE CANCER!!!
Yeah, it went that well.
My worst nightmare for today came true. My cancer is "Refractory". In other words, it is now chemo resistant. Not only is the original mass in my chest growing since chemo ended, but the one in my neck has come back to life. AND the icing on the cake, now there is a third area, in the other side of my chest, that has a cancerous tumor growing.
This is how my doc explained what happened. Basically my chemo was going along quite well from what we could tell. The PET scan I had in May (2/3 through chemo) showed a significant shrink in the tumor in my chest and nothing at all left in my neck. Which would lead to the conclusion that the chemo was working well. However, at some point, a rouge cell got smart. It mutated to become resistant to the chemo that I was receiving. This happens to 1 in 10 people in my shoes, yeah I'm that lucky.
To make matters worse, the doctor said that it's possible that the third (new area) isn't Hodgkin's at all and could be some other kind of Lymphoma.
So the next step you ask? Well my doctor, as nicely as she could, divorced me. I need a larger hospital with a doctor specializing in Refractory Lymphoma to decide what should be done. The good news is, I already had a second opinion set up with a doctor at Memorial Sloan Kettering for the radiation decision. However, when they got my final PET scan, they decided to transfer my case to another of their doctors. So I still don't have an appointment yet, but I was promised it would be in the next two weeks.
Meanwhile, I am a wreck. The cancer is just growing and all I can do is sit here and twiddle my thumbs! I HATE CANCER!!!
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