I knew it was going to be a long day, but when I got up at 5:45 in the morning, I had no idea just how long! I was picked up at 6:30 by the transportation company to get me to the cancer center by 7:15 and half way there there was the sound of a tire going flat. The driver kept going until we got to the freeway exit and got to a parking lot. By that time, the tire was totally gone! They brought another car to get me the rest of the way to the cancer center (even though I was only a block away) and I still got there before 7am. Fortunately, the doors were open. I had to wait for the people to open the check-in desk, but at least I was dry and warm.
I got up to the infusion unit and waited...and waited...and waited...after about 8am, the nurse came in and said they would be moving me to the hospital because there was no way that the treatment could be completed in the time that the center would be open. So I went down and got a voucher from social services for the transfer and went to the hospital. That was not a very comfortable place. I didn't know any of the staff and I was used to the way things were at the cancer center. Once again I waited...and I waited...and I had to wait for the orders to get transmitted to the hospital and the orders to be filled. It was almost noon before they even started the pre-meds! At least I did get two hot meals out of the ordeal.
Things wen pretty smoothly once it got started. The beginning part was the same as always...pre-meds, avistan, taxol (about 4-5 hours there). Then they had to do another round of pre-meds to make sure that I didn't react to the carbo. That was where the time started changing. They had it divided into four bags. The first bag had .056% of the drug that was infused over an hour. The second bag had .56% infused over another hour. The third bag had 5.6% infused over an hour and the fourth bag had 56% infused over 3 hours! It was after 2am before they finished with me so they let me sleep for a couple of hours and I went home at 6am (a full 24 hours after I left home!!!).
I talked to the study coordinator to see what the schedule will be the rest of the time and she told me that they would be doing the desensitization for the rest of the treatments. But she said that they would be done at a different location because she was not pleased with the way they handled things at that hospital. She will be giving me all information when I go in on Wednesday for labs. At least that will still be done at the cancer center even though I will be going to the hospital for actual treatments. I just hope that it goes better next time than it did this time!!!
Monday, May 30, 2011
Tuesday, May 24, 2011
Time for another treatment
This has been an awful three weeks. Not only did I have an allergic reaction during my last chemo treatment, but a week later my nephew was killed in a motorcycle accident in Thailand. I have had fevers off and on during the entire time and a lot more aches and pains than I normally have. I have survived, but I don't know how. My brother made the trip to Thailand to recover his son and I had to help with that.
Normally, I would have treatments on Monday, but this week they changed it to Wednesday because they don't have enough staff on Mondays to keep someone one-on-one with me. They have to do that because they are going to try to desensitize me to the carboplatin (the one I had a reaction to) to make sure I don't have another allergic reaction. Normally it takes about 30-45 minutes to infuse that one and this time they will be doing it over 6-8 hours. That is in addition to the 3 hours for the taxol and another half an hour or so for the avistan and more time for the pre-meds. I don't know how they will fit it all in between 7:15am and 5pm. It's a good thing they left the port accessed after they drew the labs today. I will let you know how that all goes tomorrow.
Normally, I would have treatments on Monday, but this week they changed it to Wednesday because they don't have enough staff on Mondays to keep someone one-on-one with me. They have to do that because they are going to try to desensitize me to the carboplatin (the one I had a reaction to) to make sure I don't have another allergic reaction. Normally it takes about 30-45 minutes to infuse that one and this time they will be doing it over 6-8 hours. That is in addition to the 3 hours for the taxol and another half an hour or so for the avistan and more time for the pre-meds. I don't know how they will fit it all in between 7:15am and 5pm. It's a good thing they left the port accessed after they drew the labs today. I will let you know how that all goes tomorrow.
Monday, May 9, 2011
Another week gone by..,.
Hi everyone,
I have had a hard time of it this past week. I'm doing ok overall, but my stomach has been giving me a little trouble. I guess that is what the anti-nausea medications are for, but usually by the time a week has past since treatment, there is no problem. Today, I don't feel like eating and I haven't eaten very much today. I was hoping to have a good lunch, but it just isn't going to happen. I still have some joint pains, but it isn't as bad as it has been in the past. I guess I am just getting used to it. I think numbness is more a problem, especially when I am trying to open some kind of package. Life is treating me well and I hope that I can continue to do more things as time goes by.
Today, I went to the Activity and Recreation Center (ARC) and walked laps and spent some time on one of the bikes that works the arms. I really think that I need to get more time working out so that I don't waste away. Already, I feel like I have aged and it scares me. Maybe now I look my age instead of 10 years (or more) younger than I really am. I shouldn't complain because it is good to look young, but it is frustrating when you are close to 50 and people tell you they think you are under 30. I talked to one old lady and she told me about a fitness class that might do what I'm hoping to accomplish. I was really surprised when she told me she was 72 because she looked so young. I hope that I look that well when I get to be that age. Note that I said when. I don't plan to give up even if the going gets tough. I guess I will wait and see what the future holds in store for me.
I have had a hard time of it this past week. I'm doing ok overall, but my stomach has been giving me a little trouble. I guess that is what the anti-nausea medications are for, but usually by the time a week has past since treatment, there is no problem. Today, I don't feel like eating and I haven't eaten very much today. I was hoping to have a good lunch, but it just isn't going to happen. I still have some joint pains, but it isn't as bad as it has been in the past. I guess I am just getting used to it. I think numbness is more a problem, especially when I am trying to open some kind of package. Life is treating me well and I hope that I can continue to do more things as time goes by.
Today, I went to the Activity and Recreation Center (ARC) and walked laps and spent some time on one of the bikes that works the arms. I really think that I need to get more time working out so that I don't waste away. Already, I feel like I have aged and it scares me. Maybe now I look my age instead of 10 years (or more) younger than I really am. I shouldn't complain because it is good to look young, but it is frustrating when you are close to 50 and people tell you they think you are under 30. I talked to one old lady and she told me about a fitness class that might do what I'm hoping to accomplish. I was really surprised when she told me she was 72 because she looked so young. I hope that I look that well when I get to be that age. Note that I said when. I don't plan to give up even if the going gets tough. I guess I will wait and see what the future holds in store for me.
Tuesday, May 3, 2011
5/3/201 CT scan/Chemo 3/ alergic reaction/hospital stay
Hi everyone,
A lot has happened in the last week. I had a pain free week last week, but since I had a CT scan last Friday I had to take the contrast Thursday night. The instructions said to take at bedtime. Ordinarily that would not be a problem, but since I have a colostomy, I had a serious problem four hours after drinking it. I had a two-piece appliance on and I didn't wake up when it became full. When I did wake up at 4am, the bag popped off the phlange holding it to my body and I got sh-t all over me and my bed. I took my dirty clothes off when I got in the bathroom and walked around like that until after I took a shower and put on a new ostomy appliance. That was so embarrassing! I got the CT done and had similar filling of the bag 4 hours after drinking the contrast again but since I was awake, I was able to empty the bag before it became a problem.
On Monday, I saw my gyn/onc and she told me there was "no measurable disease" on the CT. The good thing about that is that it means that the tumors they saw during the surgery did not grow. She also told me the CA-125 was decreasing. It started out above 100 before treatment and was at 40 after the first treatment and was down to 30 on the labs performed last week. As long as it continues to go down that will be good. I got down to the AIU around 10am, but it took them until almost noon to get the pre-medications to me and it was really slow getting the rest of themto me as well. I did ok most of the time, but when they finished with the last medication, I had a severe reaction to it. It was really scary the way the staff reacted. They brought in a doctor to deal with the reaction and they gave me some stuff to reduce the reaction and had me taken by ambulance to the hospital. I was kept overnight for observation and now I am waiting for the discharge orders.
I got to the hospital and the information on getting me admitted go to the hospital, but not to the emergency room. They weren't expecting me, but at least they didn't turn me away. They got word on my right before they knew what room I would be in. When I got there, my arms and face were all red and splotchy, but by two hours after the redness started, it was all back to normal. My gyn/onc came through a few minutes ago and said that they would be calling a prescription that will help me come off the steroids they gave me to deal with the reaction. I will pick that up when I go to pick up my shoes that they didn't find until after I left by ambulance yesterday. Life really sucks. At least the joint pain and nausea haven't started yet. I hope they give me a break this week because I am so tired of dealing with that. One thing the doctor said was that this kind of reaction doesn't happen with carboplatin after the first round of treatments, but usually after two or three treatments of the first recurrence there will be a reaction. She needs to check with the study protocol of what to do about the reaction. She says there are three possibilities: 1.They can do a desensitization where they give me the drug in smaller amounts at a time to get me used to it again or 2.they can change me to cisplatin which is a "cousin drug" or 3.they can drop it all together. She said she would let me know before the next treatment. This is a much nicer hospital than the university hospital was. All the rooms are private and they all have their own shower which is really nice since there was only one shower room on the wing I was on and the nurse had to schedule times for such things so I only got maybe 2 showers for the 10 days I was there. I haven't taken a shower here, but it is good to know that it is available. My nurse just came in and said I would probably be out of here by noon. That's all for now folks!
A lot has happened in the last week. I had a pain free week last week, but since I had a CT scan last Friday I had to take the contrast Thursday night. The instructions said to take at bedtime. Ordinarily that would not be a problem, but since I have a colostomy, I had a serious problem four hours after drinking it. I had a two-piece appliance on and I didn't wake up when it became full. When I did wake up at 4am, the bag popped off the phlange holding it to my body and I got sh-t all over me and my bed. I took my dirty clothes off when I got in the bathroom and walked around like that until after I took a shower and put on a new ostomy appliance. That was so embarrassing! I got the CT done and had similar filling of the bag 4 hours after drinking the contrast again but since I was awake, I was able to empty the bag before it became a problem.
On Monday, I saw my gyn/onc and she told me there was "no measurable disease" on the CT. The good thing about that is that it means that the tumors they saw during the surgery did not grow. She also told me the CA-125 was decreasing. It started out above 100 before treatment and was at 40 after the first treatment and was down to 30 on the labs performed last week. As long as it continues to go down that will be good. I got down to the AIU around 10am, but it took them until almost noon to get the pre-medications to me and it was really slow getting the rest of themto me as well. I did ok most of the time, but when they finished with the last medication, I had a severe reaction to it. It was really scary the way the staff reacted. They brought in a doctor to deal with the reaction and they gave me some stuff to reduce the reaction and had me taken by ambulance to the hospital. I was kept overnight for observation and now I am waiting for the discharge orders.
I got to the hospital and the information on getting me admitted go to the hospital, but not to the emergency room. They weren't expecting me, but at least they didn't turn me away. They got word on my right before they knew what room I would be in. When I got there, my arms and face were all red and splotchy, but by two hours after the redness started, it was all back to normal. My gyn/onc came through a few minutes ago and said that they would be calling a prescription that will help me come off the steroids they gave me to deal with the reaction. I will pick that up when I go to pick up my shoes that they didn't find until after I left by ambulance yesterday. Life really sucks. At least the joint pain and nausea haven't started yet. I hope they give me a break this week because I am so tired of dealing with that. One thing the doctor said was that this kind of reaction doesn't happen with carboplatin after the first round of treatments, but usually after two or three treatments of the first recurrence there will be a reaction. She needs to check with the study protocol of what to do about the reaction. She says there are three possibilities: 1.They can do a desensitization where they give me the drug in smaller amounts at a time to get me used to it again or 2.they can change me to cisplatin which is a "cousin drug" or 3.they can drop it all together. She said she would let me know before the next treatment. This is a much nicer hospital than the university hospital was. All the rooms are private and they all have their own shower which is really nice since there was only one shower room on the wing I was on and the nurse had to schedule times for such things so I only got maybe 2 showers for the 10 days I was there. I haven't taken a shower here, but it is good to know that it is available. My nurse just came in and said I would probably be out of here by noon. That's all for now folks!
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