My week off at home (week 4) has been challenging. As usual, on Monday I started getting the low-grade fevers and by Wednesday the fever got up to 101. So, I went back into the hospital on Thursday for the usual tests to see if I had any infection. And, as usual, nothing was detected and my blood counts were good, so they sent me home on Friday. I continue to get the fevers at home, but they are low-grade and with a little rest, plenty of fluids and a blanket, they go away. The problem is, they keep coming back.
I still can't speak. It's been over a week now. Sometimes it is VERY frustrating not being able to communicate or get someone's attention. Like in the hospital. You know the nurse's call button? You push it and a moment later someone answers on the intercom and asks, "how can I help you?". They are unable to hear my response.
I really don't mind these minor little setbacks. My goal is to go through the entire treatment and get better. I realize that things will come up. I just want to stay on track and NOT fall behind schedule. 6 little fishies remain.
I'm back in the hospital again and have started cycle three. With pain medicine I can control the pain, but I still don't want to eat or drink very much. I've lost about 10 pounds so far. I know what I have to do to maintain the weight, but with the fevers and the sores, it has been a challenge.
The radiaion has not only affected inside my body, but my face and neck also. Most of last week while I was at home, my face and neck have been peeling as if I had a bad sunburn. As of today, my face has healed up nicely, but my neck still has some discoloration and a few scabs from sores. You can definitely see where on my body they have been giving the radiation.
Monday, September 27, 2010
Tuesday, September 21, 2010
The fight is on
The remainder of the week in the hospital was uneventful. Eating and drinking have become more of a chore. There's not much pleasure left in eating anything sweet. My taste buds are pretty much gone. Still, I enjoy a nice glass of water once in a while. Most of my diet has become Ensure drinks over ice and Scandi shakes. I must consume calories and proteins.
I mentioned in my previous blog that the radiation machine was out of order on last Monday. Well, it was still unavailable on Tuesday. So, all of us on the 6th floor of the head and neck cancer wing had to make up a treatment of 200 centigrey on.....Saturday! Oh well, time served! It's also good to know that they're not skimping on my dosage of radiation.
I have started to feel some of the effects of the chemo and radiation. Last Thursday and Friday, all I was able to do was lay in bed and sleep. I just didn't have the energy to do anything. I didn't watch movies, read books, write any blogs or emails. I tried my best to eat and drink, but that has really become something I do not look forward to. I must think of food as medicine. And I've been reminded that if I lose any more weight, I'm going to have to have a feeding tube.
Over the weekend, my mouth sores and throat got worse and I lost my voice. Speaking is now a chore.
Still, I manage the pain so that I'm able to swallow and I find myself popping all sorts of pills throughout the day. I'm following quite a regimen. Besides all of the pills and injections, I'm administering my own daily IVs. Also, I have three different mouth washes and treatments for my mouth that I must do at leat 4 times a day. And, I have special lotions to put on my neck and face, lips, hands and feet that I must apply several times a day. My face has peeled as if I were in the sun and I pretty sure that is what is going on inside my mouth and throat as well.
Today I saw my oncologist. She asked me to describe how I was feeling. Miserable was not the right word. Uncomfortable was more accurate. She said I looked pretty good for this stage of the game. I must not lose any more weight or else...But overall, I know I'll get through this. By the way, I removed another fishie.
I mentioned in my previous blog that the radiation machine was out of order on last Monday. Well, it was still unavailable on Tuesday. So, all of us on the 6th floor of the head and neck cancer wing had to make up a treatment of 200 centigrey on.....Saturday! Oh well, time served! It's also good to know that they're not skimping on my dosage of radiation.
I have started to feel some of the effects of the chemo and radiation. Last Thursday and Friday, all I was able to do was lay in bed and sleep. I just didn't have the energy to do anything. I didn't watch movies, read books, write any blogs or emails. I tried my best to eat and drink, but that has really become something I do not look forward to. I must think of food as medicine. And I've been reminded that if I lose any more weight, I'm going to have to have a feeding tube.
Over the weekend, my mouth sores and throat got worse and I lost my voice. Speaking is now a chore.
Still, I manage the pain so that I'm able to swallow and I find myself popping all sorts of pills throughout the day. I'm following quite a regimen. Besides all of the pills and injections, I'm administering my own daily IVs. Also, I have three different mouth washes and treatments for my mouth that I must do at leat 4 times a day. And, I have special lotions to put on my neck and face, lips, hands and feet that I must apply several times a day. My face has peeled as if I were in the sun and I pretty sure that is what is going on inside my mouth and throat as well.
Today I saw my oncologist. She asked me to describe how I was feeling. Miserable was not the right word. Uncomfortable was more accurate. She said I looked pretty good for this stage of the game. I must not lose any more weight or else...But overall, I know I'll get through this. By the way, I removed another fishie.
Tuesday, September 14, 2010
Cycle two
Quick update on how I'm feeling.
I seem to have the pain well managed now. So I am now eating and drinking enough food throughout the day. It takes me a long time to each a meal because swallowing is still a chore, there is tightness on my lips and gums and I still have a few sores in my mouth and around the tongue. But on Sunday morning when I couldn't even take a sip of water, I realized how much I appreciate every swallow I take now. I've learned to really appreciate drinking water out of a glass rather than a plastic cup or bottle. To me, the difference in taste is significant. Try it out sometime.
Today (Monday) I had only one radiation treatment as one of their machines was out of service. They gave me the standard dose of 200 centigrey. When I have two radiation treatments, I get 150 centigrey for each of the two. So having the two treatments at 150 centigrey (or 300) is considered more aggressive treatment. The chemo treatment is the same as cycle one. The only difference is that they gave me extra hydration because of the fever I had last week and I had a blood transfusion of 2 units. I must say that I felt like I had a lot more energy after the transfusion and I was able to speak French fluently! Oo la la.
I've been eating well, focused on proteins and carbs. I've also stocked up on the Ensure and Scandi shakes which provide me the protein and calories that I'll be needing in the very near future. I've dropped about 5 lbs. this past week. Now I weigh 196. I still can't imagine losing 40-50 lbs. That's thinner than my high school weight. I was always about 180-185.
I feel great that the treatment continues to move forward. I'm anxious to get through cycle two. Karla and Jessica are coming to visit me tomorrow. Jessica had an appointment in nearby downtown. So they'll stop over after that for a short visit before hurrying back to school in the afternoon. Last time they were here, we played battle ship and 5 card draw.
Well, that's all for now.
Peace
I seem to have the pain well managed now. So I am now eating and drinking enough food throughout the day. It takes me a long time to each a meal because swallowing is still a chore, there is tightness on my lips and gums and I still have a few sores in my mouth and around the tongue. But on Sunday morning when I couldn't even take a sip of water, I realized how much I appreciate every swallow I take now. I've learned to really appreciate drinking water out of a glass rather than a plastic cup or bottle. To me, the difference in taste is significant. Try it out sometime.
Today (Monday) I had only one radiation treatment as one of their machines was out of service. They gave me the standard dose of 200 centigrey. When I have two radiation treatments, I get 150 centigrey for each of the two. So having the two treatments at 150 centigrey (or 300) is considered more aggressive treatment. The chemo treatment is the same as cycle one. The only difference is that they gave me extra hydration because of the fever I had last week and I had a blood transfusion of 2 units. I must say that I felt like I had a lot more energy after the transfusion and I was able to speak French fluently! Oo la la.
I've been eating well, focused on proteins and carbs. I've also stocked up on the Ensure and Scandi shakes which provide me the protein and calories that I'll be needing in the very near future. I've dropped about 5 lbs. this past week. Now I weigh 196. I still can't imagine losing 40-50 lbs. That's thinner than my high school weight. I was always about 180-185.
I feel great that the treatment continues to move forward. I'm anxious to get through cycle two. Karla and Jessica are coming to visit me tomorrow. Jessica had an appointment in nearby downtown. So they'll stop over after that for a short visit before hurrying back to school in the afternoon. Last time they were here, we played battle ship and 5 card draw.
Well, that's all for now.
Peace
Saturday, September 11, 2010
Detour
Remember the "honeymoon" week wasn't feeling too much like a honeymoon? Well....
Labor Day weekend was nice. Some of our closest friends had an amazing Labor Day party on Sunday in one of the forest preserves. It was a great day and everyone had a blast. I was feeling pretty well and eating and drinking normally, but I could tell there were changes happening inside my mouth and throat. On Monday, I woke up with a very sore throat, so I started taking more pain medication. I also had a low-grade fever throughout the day. Tuesday was a little worse, so more pain medication. I also had to go to the University of Chicago for an appointment and have my blood work done. When I got home from the hospital Tuesday evening, I took my temperature. 100.9. Remember, I'm supposed to go to the ER when my fever is over 100.5. So, I took some Tylenol and the fever went down. Phew!
Unfortunately, that's not the end of the story. I woke up at 4am the next morning shivering. My temperature was 101.5. After more Tylenol, the fever went away, but never completely. I still had a low-grade fever. I told Karla that since I responded so well to the Tylenol, we should wait to see if my fever spiked again before making the decision to go in to the hospital. Karla didn't like this idea, but I was determined to stay in bed. I got up around 7am and Karla had already left for work. The kids started school this week and had to be out the door around 8:45. It was at that time when I started shivering again. The chills were so bad, that I was shaking uncontrollably. That's the last image Jessica and Jakob had of me as they walked out the door on Wednesday morning. I crawled back into bed and tried to warm myself up. I took my temperature when Karla called to check on me. It was 102.
I arrived at the Emergency Room around noon. I knew the routine. Hook me up to IV's, draw some blood, pee in a cup, chest x-ray, and answer many questions. My mouth pain was intolerable by now, so they gave me morphine. Low dosages I think. It helped a little bit, but swallowing was still extremely difficult. A few hours later I was admitted into my own private room with a window view of the wing of the hospital I spent all of last week in. No matter. All I wanted to do was to sleep anyway.
The doctors did not find any signs of infection, though my throat was completely raw. It was a tough 3 days, but at least I was well cared for and closely monitored. I couldn't eat anything. I did manage to get down a couple Ensure drinks. Today (Friday), I had a low-grade fever a couple of times, but overall I felt much better. Perhaps my throat and mouth are on the mend or maybe I am managing the pain a little better.
By early afternoon, the doctors were faced with a decision. Should they send me home knowing my fever may possibly spike again or keep me in the hospital, continue to monitor me until Sunday when I am to be re-admitted for treatment anyway? I'm glad they allowed me to join the debate and I feel that I presented a very persuasive argument for why they should send me home. After all, Tylenol has always knocked out my fever. I could always go back. I think I pulled at the doctors' heart strings when I said that I really miss my kids and they miss me. And it was, after all, their first week of school.
Well, here I am at home. It's 2:45am and I can't sleep. That's usually when I write these postings anyway. My temperature is 100. More Tylenol please. I was able to drink a shake and I ate cottage cheese and some jello. I believe my throat is getting better, but only time will tell. I'm hoping to eat well tomorrow (today). This next week, I've been told I will have a blood transfusion to help with my blood counts and to make the radiation more effective.
I am very grateful to have a day at home with my family before going back to U of C. Lastly, did you notice the fish? Only 8 left. I must stay on course.
Labor Day weekend was nice. Some of our closest friends had an amazing Labor Day party on Sunday in one of the forest preserves. It was a great day and everyone had a blast. I was feeling pretty well and eating and drinking normally, but I could tell there were changes happening inside my mouth and throat. On Monday, I woke up with a very sore throat, so I started taking more pain medication. I also had a low-grade fever throughout the day. Tuesday was a little worse, so more pain medication. I also had to go to the University of Chicago for an appointment and have my blood work done. When I got home from the hospital Tuesday evening, I took my temperature. 100.9. Remember, I'm supposed to go to the ER when my fever is over 100.5. So, I took some Tylenol and the fever went down. Phew!
Unfortunately, that's not the end of the story. I woke up at 4am the next morning shivering. My temperature was 101.5. After more Tylenol, the fever went away, but never completely. I still had a low-grade fever. I told Karla that since I responded so well to the Tylenol, we should wait to see if my fever spiked again before making the decision to go in to the hospital. Karla didn't like this idea, but I was determined to stay in bed. I got up around 7am and Karla had already left for work. The kids started school this week and had to be out the door around 8:45. It was at that time when I started shivering again. The chills were so bad, that I was shaking uncontrollably. That's the last image Jessica and Jakob had of me as they walked out the door on Wednesday morning. I crawled back into bed and tried to warm myself up. I took my temperature when Karla called to check on me. It was 102.
I arrived at the Emergency Room around noon. I knew the routine. Hook me up to IV's, draw some blood, pee in a cup, chest x-ray, and answer many questions. My mouth pain was intolerable by now, so they gave me morphine. Low dosages I think. It helped a little bit, but swallowing was still extremely difficult. A few hours later I was admitted into my own private room with a window view of the wing of the hospital I spent all of last week in. No matter. All I wanted to do was to sleep anyway.
The doctors did not find any signs of infection, though my throat was completely raw. It was a tough 3 days, but at least I was well cared for and closely monitored. I couldn't eat anything. I did manage to get down a couple Ensure drinks. Today (Friday), I had a low-grade fever a couple of times, but overall I felt much better. Perhaps my throat and mouth are on the mend or maybe I am managing the pain a little better.
By early afternoon, the doctors were faced with a decision. Should they send me home knowing my fever may possibly spike again or keep me in the hospital, continue to monitor me until Sunday when I am to be re-admitted for treatment anyway? I'm glad they allowed me to join the debate and I feel that I presented a very persuasive argument for why they should send me home. After all, Tylenol has always knocked out my fever. I could always go back. I think I pulled at the doctors' heart strings when I said that I really miss my kids and they miss me. And it was, after all, their first week of school.
Well, here I am at home. It's 2:45am and I can't sleep. That's usually when I write these postings anyway. My temperature is 100. More Tylenol please. I was able to drink a shake and I ate cottage cheese and some jello. I believe my throat is getting better, but only time will tell. I'm hoping to eat well tomorrow (today). This next week, I've been told I will have a blood transfusion to help with my blood counts and to make the radiation more effective.
I am very grateful to have a day at home with my family before going back to U of C. Lastly, did you notice the fish? Only 8 left. I must stay on course.
Saturday, September 4, 2010
Cycle one
They called the first week in the hospital the "honeymoon". This is the time when I got to know all of the friendly faces, the procedures and routines and how to care for myself during the off week. It's also the honeymoon because the body doesn't react to all the chemo and radiation until late in the week and when you return home. Then, the honeymoon is over. I'm not agonizing now (Saturday), but it does not feel like a honeymoon.
I completed the hospital stay of cycle one this past week from Sunday to Friday. During my stay I was given three different chemotherapy drugs and had radiation treatments twice a day. On Sunday evening, the nurse prepared my double power port with two catheters in order to infuse the first drug 5-FU (aka Fluorouracil). This drug was infused the entire time I was in the hospital. Unfortunately, last week my scans revealed a small clot near my port and the doctor on call decided not to use the port for the infusion. So, they started an IV in my left arm. On Monday, however, when I met with my regular oncologist, it was decided to go ahead and use the port for the infusions and to treat the clot with a blood thinning drug which I am to administer to myself twice daily by injection until my port is taken out. A small bump in the road. Also, on Monday, I was given the second chemo drug Taxol (aka Paclitaxel) by infusion. This drug is only given to me on Mondays of my hospital stay. Lastly, I am given a drug called Hydrea by pill twice a day. The first pill given two hours before my first radiation treatment, the second twelve hours later. All three of these drugs have a long list of side effects. The most common are low blood counts, fatigue, mouth sores, hair loss (not a problem - not much left) and poor appetite.
Radiation was an interesting experience. In the mornings and the afternoons, I am picked up by a nice person whose job it is to make sure I get to where I need to go. We take an elevator from the 6th floor all the way down past the basement to the sub-basement of the hospital. There we walk through many different long corridors, turning, pushing buttons to open doors, a left then a right. Good thing I have my guide. After 10 trips back and forth, I still don't know where I'm going. When we arrive, I sit and wait to be called. A few minutes later, I go into a radiation room and prepare for my treatment. I must lie down on a board with my head and shoulders in the cast that was made for me. Then, I am adjusted. "Scoot up a little. Chin up. Move your shoulders to the left. OK, lie still, here comes the mask." I appreciate how meticulous and precise these people are. They must position my body perfectly before the radiation treatments. The mask is then clamped down over my face. It is a bit uncomfortable at first, but I've gotten used to it. The radiation treatment lasts about 20-30 minutes and there are 16 different radiation fields for my treatment.
The effects from the radiation treatment and the chemo are beginning. I can still eat, however, I don't have much of an appetite. I am told to think of eating as taking medicine. Eat as much as I can, at least 2500 calories per day. My new mantra is "proteins and calories".
Now, I am back at home to recover from what was done to me throughout the week. My radiologist told me yesterday that they slapped me and I won't feel it until this week. I was given quite a welcoming party. Karla, Jake and Jess had signs up on the walls and I was greeted with their very big happy smiles. That's the best medicine.
I'll be busy this week taking care of myself. I have quite a regimen to follow, including putting on lotions, lip balm, giving myself shots, tongue and mouth excercises and figuring out my meals. Whatever I must do, I will do and I will enjoy this temporary reprieve until I return to the hospital a week from Sunday, September 12th. By the way, each fish above represents one week of my treatment. I removed one. Nine remain!
I completed the hospital stay of cycle one this past week from Sunday to Friday. During my stay I was given three different chemotherapy drugs and had radiation treatments twice a day. On Sunday evening, the nurse prepared my double power port with two catheters in order to infuse the first drug 5-FU (aka Fluorouracil). This drug was infused the entire time I was in the hospital. Unfortunately, last week my scans revealed a small clot near my port and the doctor on call decided not to use the port for the infusion. So, they started an IV in my left arm. On Monday, however, when I met with my regular oncologist, it was decided to go ahead and use the port for the infusions and to treat the clot with a blood thinning drug which I am to administer to myself twice daily by injection until my port is taken out. A small bump in the road. Also, on Monday, I was given the second chemo drug Taxol (aka Paclitaxel) by infusion. This drug is only given to me on Mondays of my hospital stay. Lastly, I am given a drug called Hydrea by pill twice a day. The first pill given two hours before my first radiation treatment, the second twelve hours later. All three of these drugs have a long list of side effects. The most common are low blood counts, fatigue, mouth sores, hair loss (not a problem - not much left) and poor appetite.
Radiation was an interesting experience. In the mornings and the afternoons, I am picked up by a nice person whose job it is to make sure I get to where I need to go. We take an elevator from the 6th floor all the way down past the basement to the sub-basement of the hospital. There we walk through many different long corridors, turning, pushing buttons to open doors, a left then a right. Good thing I have my guide. After 10 trips back and forth, I still don't know where I'm going. When we arrive, I sit and wait to be called. A few minutes later, I go into a radiation room and prepare for my treatment. I must lie down on a board with my head and shoulders in the cast that was made for me. Then, I am adjusted. "Scoot up a little. Chin up. Move your shoulders to the left. OK, lie still, here comes the mask." I appreciate how meticulous and precise these people are. They must position my body perfectly before the radiation treatments. The mask is then clamped down over my face. It is a bit uncomfortable at first, but I've gotten used to it. The radiation treatment lasts about 20-30 minutes and there are 16 different radiation fields for my treatment.
The effects from the radiation treatment and the chemo are beginning. I can still eat, however, I don't have much of an appetite. I am told to think of eating as taking medicine. Eat as much as I can, at least 2500 calories per day. My new mantra is "proteins and calories".
I'll be busy this week taking care of myself. I have quite a regimen to follow, including putting on lotions, lip balm, giving myself shots, tongue and mouth excercises and figuring out my meals. Whatever I must do, I will do and I will enjoy this temporary reprieve until I return to the hospital a week from Sunday, September 12th. By the way, each fish above represents one week of my treatment. I removed one. Nine remain!
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