I came home from NIH today free from my PICC line and hopefully done with EPOCH-CR for the rest of my life. WOOHOO. Celebrate!
Its a strange feeling though. I remember walking out of NIH last January with Kate feeling incredibly happy and positive when I had my sixth PICC line pulled. At that point we thought I was done with chemotherapy for good, and only had to wait for the great news that we ended up receiving at the end of the month. I was told I was in remission, and we didn't expect to be going through this again. Last January it was definitely a different, and more joyous celebration than what we are feeling today.
I'm happy today. 12 rounds of this chemotherapy is more than anybody should have to deal with, but it has been my life for the last fourteen months. I also feel confident that on December 4th when I have my next PET scan, that the doctors will tell me once again that my cancer is in remission. However, my experience has shown me that remission doesn't guarantee anything. Remission doesn't mean a clean bill of health, and I'll have to be prepared for any more obstacles that get put in my way.
The other big difference is that when I left NIH on January 31, 2008, my only plan was to return in three months for a CT scan and a checkup. After my checkup on December 4th, I'll be back at NIH the very next day getting ready for my bone marrow transplant. That weekend should hopefully be full of fun, because the plan is for me to begin my inpatient stay on the 10th or 11th of December. That will be a crazy time in my family's life. As much as we feel prepared for that time coming up, its going to be hard to deal with when it hits. Hopefully the transplant will be a huge success, which will only make the disruption of a long term hospital stay feel like a nuisance as time passes.
Showing posts with label picc line. Show all posts
Showing posts with label picc line. Show all posts
Tuesday, November 18, 2008
Saturday, August 23, 2008
First Round of Chemotherapy Done
THURSDAY, AUGUST 21, 2008 12:13 AM, CDT
Well today is day 21 of this most recent round of chemo. School for DC starts next week, and Tuesday was the first day of work for teachers in DC. I was able to work the last two days because I have been feeling very good since Thursday. I haven't needed naps to get through the day, and I've truly felt as good as ever. Work the past two days involved all day professional development, which isn't a bad thing. I was happy to see some of my colleagues and get back into the mindset of work, although it is frustrating to know that I'll likely be missing so much time in the next few months.
Tommorow will probably start day 1 of round 2 assuming things have gone well. I'll start tommorow off with a Pet Scan in the late morning. I had a Pet Scan less than a month ago, and its rare for Pet Scans to be used so close together. Hopefully it will give results that show the tumor is shrinking. This is what I expect, but we've been disappointed by expectations in terms of my health in the last month.
In addition to meeting with my research team tommorow, I'm hoping to meet with the transplant team in order to start hearing a bit more about what the transplant process will be like. This is the part of my treatment that is most likely to cause me anxiety, so I'm eager to start finding out more about it.
Following the meetings with the doctors I'll likely get the PICC line placed in my arm before getting admitted for the overnight Campath infusion. Hopefully they will be able to get started earlier than 1 AM this round, so I can get out of the hospital quickly Friday morning.
Well...off to kill some more cancer tommorow. As always...the prayers and thoughts from everybody is appreciated.
Well today is day 21 of this most recent round of chemo. School for DC starts next week, and Tuesday was the first day of work for teachers in DC. I was able to work the last two days because I have been feeling very good since Thursday. I haven't needed naps to get through the day, and I've truly felt as good as ever. Work the past two days involved all day professional development, which isn't a bad thing. I was happy to see some of my colleagues and get back into the mindset of work, although it is frustrating to know that I'll likely be missing so much time in the next few months.
Tommorow will probably start day 1 of round 2 assuming things have gone well. I'll start tommorow off with a Pet Scan in the late morning. I had a Pet Scan less than a month ago, and its rare for Pet Scans to be used so close together. Hopefully it will give results that show the tumor is shrinking. This is what I expect, but we've been disappointed by expectations in terms of my health in the last month.
In addition to meeting with my research team tommorow, I'm hoping to meet with the transplant team in order to start hearing a bit more about what the transplant process will be like. This is the part of my treatment that is most likely to cause me anxiety, so I'm eager to start finding out more about it.
Following the meetings with the doctors I'll likely get the PICC line placed in my arm before getting admitted for the overnight Campath infusion. Hopefully they will be able to get started earlier than 1 AM this round, so I can get out of the hospital quickly Friday morning.
Well...off to kill some more cancer tommorow. As always...the prayers and thoughts from everybody is appreciated.
Chemotherapy Update
WEDNESDAY, AUGUST 06, 2008 03:25 PM, CDT
Today is Wednesday...Day 6 in this round of chemotherapy. Yesterday I spent several hours at the hospital receiving the last of my chemotherapy. After that I had the PICC line, 52 cms of catheter, removed from my veins and was sent on my way. Since leaving the hospital on Friday, the process has felt pretty uneventful. It hasn't been that long since I had chemo, and it unfortunately rushes back into your consciousness quickly. While its a crappy experience, it feels almost normal to me.
Today I am exhausted. Part of the chemotherapy is taking a steroid called Prednisone. It gives me a huge hunger, which isn't a bad thing since I love to eat, and a lot of energy. However, my final dose of prednisone was last night, and this morning I could do nothing but sleep. Without the steroids in my system, I truly feel how much these drugs beat the body down. It sucks to feel worthless, and I've got some of that going on. I can still do some of the daddy stuff with Isaiah and help out a miniscule amount around the house, but not much.
Don't know what else to write. I think I could write a novel about how the chemo messes with the usual bodily functions, but I know not everybody will be interested in that. I think I'll keep the posting here clean and get back to napping.
Today is Wednesday...Day 6 in this round of chemotherapy. Yesterday I spent several hours at the hospital receiving the last of my chemotherapy. After that I had the PICC line, 52 cms of catheter, removed from my veins and was sent on my way. Since leaving the hospital on Friday, the process has felt pretty uneventful. It hasn't been that long since I had chemo, and it unfortunately rushes back into your consciousness quickly. While its a crappy experience, it feels almost normal to me.
Today I am exhausted. Part of the chemotherapy is taking a steroid called Prednisone. It gives me a huge hunger, which isn't a bad thing since I love to eat, and a lot of energy. However, my final dose of prednisone was last night, and this morning I could do nothing but sleep. Without the steroids in my system, I truly feel how much these drugs beat the body down. It sucks to feel worthless, and I've got some of that going on. I can still do some of the daddy stuff with Isaiah and help out a miniscule amount around the house, but not much.
Don't know what else to write. I think I could write a novel about how the chemo messes with the usual bodily functions, but I know not everybody will be interested in that. I think I'll keep the posting here clean and get back to napping.
EPOCH-C
WEDNESDAY, JULY 30, 2008 09:38 PM, CDT
I didn't go to the hospital today, but I got a lot of information. My parents went to meet with my treatment team, and I chose not to go so I could handle other business. I also will be spending a lot of time at the hospital tommorow, so I enjoyed not being there today.
The report back from my parents was that the biopsy last Friday gave good information. The nature of Grey Zone lymphoma is that it has signs of Hodgkins Disease and Non Hodgkins Lymphoma(NHL). My current tumor did not have signs of CD20 cells, which are the marker for B cell lymphoma. So the treatment I went through last year appears to have been successful in eliminating the aspects of my tumor that more closely resembled NHL. Therefore my current tumor is closer to Hodgkins Disease than the previous growth I had last year. However, the doctors are still classifying my tumor as Grey Zone lymphoma and not Hodgkins disease.
The best news about receiving results from the biopsy is that I should be able to start treatment tommorow. I will continue to receive EPOCH, the same base regimen that I received last time. I also received Rituxan last year, but don't think I will be receiving it this time around. Rituxan is an CD20 antibody, and since there is no presence of CD20 cells in my tissue sample, it doesn't appear to be necessary. There was evidence of CD52 cells, which are treated in Leukemia patients with Campath. The plan from my treatment team is to include Campth with this regimen of treatment. Campath has a lot of side effects and reading about them doesn't give me a reassuring feeling. However, my father explained that Leukemia patients will receive about 1000 mg of Campath over the course of their treatment, and I will be receiving only 30 mg per cycle. I am also younger than most Leukemia patients, so the likelihood of serious side effects should not be as big of an issue with my treatment. That was confusing and the best I could describe this issue. The science that goes into this process is truly amazing.
So tommorow is my big day. All of the talk ends, and I get down to curing this bitch for good. I have a Pet Scan tommorow, which isn't a big deal after undergoing two of these in the last year. My veins get filled with radioactive liquid, and some extremely detailed pictures of the cancer in my body will be taken. This should give the doctors an even better idea of what they are dealing with. I have a meeting with my doctors in the afternoon, and barring any unforseen obstacles I will have a PICC line inserted into my arm sometime before or after that meeting. That will leave some tubes hanging from my arm...kind of strange.
I'll start on my first medication, Prednisone, which is a steroid. That drug is legit, and makes me crave food like an addict. It helped me get back to a healthy weight last time around, but since I haven't shrank this time around, I wonder if it will make me put on extra weight. Oh well...there are worse side effects. Twelve hours after I take the prednisone they will start me on the Campath for 12 hours. That will keep me in the hospital overnight tommorow, which is usually not a fun thing. Hopefully I'll be able to sleep through it. After that I'll get my fanny pack and chemo bag for the next 4 days of chemotherapy joy!
Today has brought me several different feelings. I'm happy because I know I'll be able to start treatment right away and not let this cancer grow any more inside of me. However, the reality of all of the crappy issues I have to deal with is finally setting in. Well...I've got no other choice, so here it goes. Thanks for your prayers and support!
I didn't go to the hospital today, but I got a lot of information. My parents went to meet with my treatment team, and I chose not to go so I could handle other business. I also will be spending a lot of time at the hospital tommorow, so I enjoyed not being there today.
The report back from my parents was that the biopsy last Friday gave good information. The nature of Grey Zone lymphoma is that it has signs of Hodgkins Disease and Non Hodgkins Lymphoma(NHL). My current tumor did not have signs of CD20 cells, which are the marker for B cell lymphoma. So the treatment I went through last year appears to have been successful in eliminating the aspects of my tumor that more closely resembled NHL. Therefore my current tumor is closer to Hodgkins Disease than the previous growth I had last year. However, the doctors are still classifying my tumor as Grey Zone lymphoma and not Hodgkins disease.
The best news about receiving results from the biopsy is that I should be able to start treatment tommorow. I will continue to receive EPOCH, the same base regimen that I received last time. I also received Rituxan last year, but don't think I will be receiving it this time around. Rituxan is an CD20 antibody, and since there is no presence of CD20 cells in my tissue sample, it doesn't appear to be necessary. There was evidence of CD52 cells, which are treated in Leukemia patients with Campath. The plan from my treatment team is to include Campth with this regimen of treatment. Campath has a lot of side effects and reading about them doesn't give me a reassuring feeling. However, my father explained that Leukemia patients will receive about 1000 mg of Campath over the course of their treatment, and I will be receiving only 30 mg per cycle. I am also younger than most Leukemia patients, so the likelihood of serious side effects should not be as big of an issue with my treatment. That was confusing and the best I could describe this issue. The science that goes into this process is truly amazing.
So tommorow is my big day. All of the talk ends, and I get down to curing this bitch for good. I have a Pet Scan tommorow, which isn't a big deal after undergoing two of these in the last year. My veins get filled with radioactive liquid, and some extremely detailed pictures of the cancer in my body will be taken. This should give the doctors an even better idea of what they are dealing with. I have a meeting with my doctors in the afternoon, and barring any unforseen obstacles I will have a PICC line inserted into my arm sometime before or after that meeting. That will leave some tubes hanging from my arm...kind of strange.
I'll start on my first medication, Prednisone, which is a steroid. That drug is legit, and makes me crave food like an addict. It helped me get back to a healthy weight last time around, but since I haven't shrank this time around, I wonder if it will make me put on extra weight. Oh well...there are worse side effects. Twelve hours after I take the prednisone they will start me on the Campath for 12 hours. That will keep me in the hospital overnight tommorow, which is usually not a fun thing. Hopefully I'll be able to sleep through it. After that I'll get my fanny pack and chemo bag for the next 4 days of chemotherapy joy!
Today has brought me several different feelings. I'm happy because I know I'll be able to start treatment right away and not let this cancer grow any more inside of me. However, the reality of all of the crappy issues I have to deal with is finally setting in. Well...I've got no other choice, so here it goes. Thanks for your prayers and support!
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