Today is the day my hair is falling out – day 13. Last night when I went to bed the top of my head was really sore. Not headache sore but it felt like someone hit me and it was bruised. This morning when I had a bath and washed my hair it started coming out by the handfuls. When I run my fingers through it I get a lot each time. My friend is coming over after school to cut it off for me. I hope I still have some for her to cut by then! I was going to bake something today but I guess that isn’t such a good idea :-/
Audrey left yesterday. We had a nice visit. It was really great having her here as I was still in a fog when Murray and Vince left for Red Deer. She helped me out a lot with cleaning, cooking and baking and she encouraged me to get out of the house for walks and stuff.
I thought I was going to get away without the mouth sores but they started on Sunday. Other than that I am pretty much back to normal and I’m getting used to having this life line hanging out of my arm. I didn’t even need to have a nap yesterday!
Tuesday, March 31, 2009
Monday, March 23, 2009
Side Effects
If you are easily grossed out or don’t want “too much information” you probably shouldn’t read this next section…
Like I said before, I felt really good right after the injections so we went for lunch. We went to a restaurant that had Irish Stew and Soda Bread for their special and it sounded – and tasted so good to me! It wasn’t a very big portion but in hind sight it was a bit too heavy of a meal because as the afternoon wore on I started feeling more and more nauseous. Now the thought of anything like that turns my stomach and I think it will be a while before I can eat any beef.
Even though I haven’t actually vomited, I was very nauseous on and off for the first two days. I woke up on day 2 just famished and when I am hungry I have to eat NOW! I made some porridge and that just tasted so good. I crave soft bland comfort foods (white cheddar macaroni, scrambled eggs, boiled potatoes with butter, fish, chicken breasts) and fresh fruit and vegetables. I think the fruit and veggies go down so well because they quench my thirst. The drugs make my saliva very thick and my tongue is coated in this white coating. I am always thirsty but anything I drink – even water leaves a sour or metallic after taste and the fruit does too but not as quickly. Now I am starting to get the sores in my mouth so I need to go out and get some alcohol free mouthwash.
I had to take 12 pills on the first day for anti nausea, 2 for heartburn, and 4 for constipation. Believe me - when you are that constipated you can’t think of anything else! Now on Day 6 I am down to 2 for heartburn and 2 of the anti nausea as needed. YAY I hate taking pills and this is way, way out of my comfort zone.
I usually get up really early because I am so hungry and then have a nap later in the morning or sometimes in the afternoon. Last night I slept after supper for a bit. The pills make me drowsy. Bathing with this PICC line is difficult because I can’t get it wet. We have to wrap my arm with saran wrap and tape it but it is hard not to get my elbow dipped in the water. I really miss my daily showers but at this point appearance takes too much effort and isn’t on the top of my list of priorities. Hopefully that will come back….
Today I am feeling a little better and seem to have a bit more energy. It is surprising how quickly I tire out though. My sister Audrey arrived on Saturday to help me out. She is busy cleaning my bathrooms (thanks sis!) and she made a really nice supper for us last night. Later we might venture out to the grocery story. Murray and Vince are going to Red Deer on Wednesday for Vincent’s audition so she will be here to baby sit me ;o)
In some ways this is what I expected but it could be a lot worse. As much as I despise taking all these pills, it is better than puking for days on end. If that were what I had to face, I am not sure you could drag me back there for another go at it!
Some of you have expressed concern about knowing when to phone. Phone calls are great any time as this is a boring existence. Don’t worry about waking me – I can always go back to sleep. If I can’t take your call please leave a message and I will call you back when I can.
Like I said before, I felt really good right after the injections so we went for lunch. We went to a restaurant that had Irish Stew and Soda Bread for their special and it sounded – and tasted so good to me! It wasn’t a very big portion but in hind sight it was a bit too heavy of a meal because as the afternoon wore on I started feeling more and more nauseous. Now the thought of anything like that turns my stomach and I think it will be a while before I can eat any beef.
Even though I haven’t actually vomited, I was very nauseous on and off for the first two days. I woke up on day 2 just famished and when I am hungry I have to eat NOW! I made some porridge and that just tasted so good. I crave soft bland comfort foods (white cheddar macaroni, scrambled eggs, boiled potatoes with butter, fish, chicken breasts) and fresh fruit and vegetables. I think the fruit and veggies go down so well because they quench my thirst. The drugs make my saliva very thick and my tongue is coated in this white coating. I am always thirsty but anything I drink – even water leaves a sour or metallic after taste and the fruit does too but not as quickly. Now I am starting to get the sores in my mouth so I need to go out and get some alcohol free mouthwash.
I had to take 12 pills on the first day for anti nausea, 2 for heartburn, and 4 for constipation. Believe me - when you are that constipated you can’t think of anything else! Now on Day 6 I am down to 2 for heartburn and 2 of the anti nausea as needed. YAY I hate taking pills and this is way, way out of my comfort zone.
I usually get up really early because I am so hungry and then have a nap later in the morning or sometimes in the afternoon. Last night I slept after supper for a bit. The pills make me drowsy. Bathing with this PICC line is difficult because I can’t get it wet. We have to wrap my arm with saran wrap and tape it but it is hard not to get my elbow dipped in the water. I really miss my daily showers but at this point appearance takes too much effort and isn’t on the top of my list of priorities. Hopefully that will come back….
Today I am feeling a little better and seem to have a bit more energy. It is surprising how quickly I tire out though. My sister Audrey arrived on Saturday to help me out. She is busy cleaning my bathrooms (thanks sis!) and she made a really nice supper for us last night. Later we might venture out to the grocery story. Murray and Vince are going to Red Deer on Wednesday for Vincent’s audition so she will be here to baby sit me ;o)
In some ways this is what I expected but it could be a lot worse. As much as I despise taking all these pills, it is better than puking for days on end. If that were what I had to face, I am not sure you could drag me back there for another go at it!
Some of you have expressed concern about knowing when to phone. Phone calls are great any time as this is a boring existence. Don’t worry about waking me – I can always go back to sleep. If I can’t take your call please leave a message and I will call you back when I can.
Thursday, March 19, 2009
March 18 - Chemotherapy – A Necessary Evil
My Appointment was at 9 AM. First they gave us a little tour. For the seasoned recipients, there are a few big chairs for administering the chemo out in the open by some windows overlooking the river. They also have many little rooms with hospital beds and since it was my first time and they had lots of information to go over, I got one of those rooms. There are two places that you can get juice, water and cookies and they have a big oven for warming blankets that you can help yourself to. Whoever came up with heating those blankets is a genius. They are the best thing ever!
I had a nice pretty young nurse named Erika. She let me ask questions then went over some history and exactly what was going to happen today. Then she let me ask more questions. First she flushed my lines with saline and then I got a little pouch of anti nausea drugs. She flushed the lines again and started with the first chemo drug. That one took about 5 minutes. Since none of these drugs can touch each other, she flushed me again and put through the next drug. This one is bright red and it makes you pee red for a couple of days. This one took 10 minutes. I got really hungry in there so Murray went to get me some of those cookies and juice. Also somewhere in there the Pharmacist came to talk to me and gave me all the drugs I have to take for the next week or so. Then the nurse did another flush and the last drug which took about 30 minutes. I slept through most of that one because by now the anti-nausea drugs were kicking in. Another flush and I was free to go. I went to the bathroom and red stuff was already coming through!
I felt really good and it was lunch time so we stopped and had lunch on the way home. The nurse said I would probably feel the same as I always do until next week when the white cell counts go down. Well she couldn’t have been more wrong. As the afternoon wore on and the drugs started wearing off I was feeling worse and worse. On the way through Tisdale Murray suggested stopping for donuts and my stomach did a flip flop. Even the thought of having them in the van to smell was more than I could bear. By supper time I was really bad (no vomiting but just really bad nausea). I knew I had to eat or drink something so I took my pills. I had some minestrone in the fridge but I took one look at that and it was just too chunky so I had about a cup of chicken noodle soup. I felt great for about 20 minutes and then it was back. I lay around and watched some American Idol. I had to look away if they were moving too fast. I couldn’t wait for 10 o clock when I could take the other pills and go to bed. I had one really good one that helped a lot.
Today I am still not great but a lot better than yesterday. I have been able to have some toast, more soup, a pear, crackers and some juice, I have yet more new pills to take today so maybe that is what is helping. One of them is supposed to give me rosy cheeks but my face is red from under my eyes right down to my chest.
I had a nice pretty young nurse named Erika. She let me ask questions then went over some history and exactly what was going to happen today. Then she let me ask more questions. First she flushed my lines with saline and then I got a little pouch of anti nausea drugs. She flushed the lines again and started with the first chemo drug. That one took about 5 minutes. Since none of these drugs can touch each other, she flushed me again and put through the next drug. This one is bright red and it makes you pee red for a couple of days. This one took 10 minutes. I got really hungry in there so Murray went to get me some of those cookies and juice. Also somewhere in there the Pharmacist came to talk to me and gave me all the drugs I have to take for the next week or so. Then the nurse did another flush and the last drug which took about 30 minutes. I slept through most of that one because by now the anti-nausea drugs were kicking in. Another flush and I was free to go. I went to the bathroom and red stuff was already coming through!
I felt really good and it was lunch time so we stopped and had lunch on the way home. The nurse said I would probably feel the same as I always do until next week when the white cell counts go down. Well she couldn’t have been more wrong. As the afternoon wore on and the drugs started wearing off I was feeling worse and worse. On the way through Tisdale Murray suggested stopping for donuts and my stomach did a flip flop. Even the thought of having them in the van to smell was more than I could bear. By supper time I was really bad (no vomiting but just really bad nausea). I knew I had to eat or drink something so I took my pills. I had some minestrone in the fridge but I took one look at that and it was just too chunky so I had about a cup of chicken noodle soup. I felt great for about 20 minutes and then it was back. I lay around and watched some American Idol. I had to look away if they were moving too fast. I couldn’t wait for 10 o clock when I could take the other pills and go to bed. I had one really good one that helped a lot.
Today I am still not great but a lot better than yesterday. I have been able to have some toast, more soup, a pear, crackers and some juice, I have yet more new pills to take today so maybe that is what is helping. One of them is supposed to give me rosy cheeks but my face is red from under my eyes right down to my chest.
PICC Line - March 17
On Tuesday I had to go to Royal University Hospital to get my PICC line installed. First they put an IV into my arm and then wheeled me into the X-ray room. They injected a dye into the IV to help them locate a nice big vein. They cleaned my arm and draped some cloths over it. The Radiologist came in and he froze it. That part hurt the most because it really burns and then the burning spreads out in every direction. At some point they made a tiny incision and inserted this catheter into the vein using the ultrasound to guide it into place. It starts about ½ way up my bicep and goes all the way up my arm, loops around and ends up near my heart where the blood flows quickly. (kind of like an upside down U). There are two little lines coming out the bottom with valves on the end. They can use this to administer the chemo drugs, saline or to withdraw blood. It really isn’t as bad having it as I thought it would be. It was just very sore the first day and night but it is a big PITA when I need to bathe or shower because I can’t get it wet.
That night when I was getting ready for bed I noticed there seemed to be quite a bit of blood around the incision and it looked like the lines were right full of blood. This freaked me out a little because I wasn’t sure if it was normal. I called emergency at RUH and they didn’t know but they told me to call the Health Line. They weren’t sure so they told me to call emergency. I said I already talked to them but she said try to talk to someone in oncology. Yeah right this is 11:30 at night! I called back to emergency and she said she could call the oncologist on call but I didn’t think this was serious enough for that. She then put me through to the nurse on the 6th floor because they have cancer patients and deal with PICC lines a lot. That nurse said I probably should come in and have it flushed. The emergency department in the city at midnight is quite a bustling place but fortunately I didn’t have to wait too long though and the nurse at the desk just put me in a room and took care of it. It turned out that once I got under those bright lights it was just the color of the line and there wasn’t any blood in it at all. I felt kind of foolish but she flushed it out anyway and all in all we were only gone about 1 hour counting the driving time to and from.
Now homecare has to come in once per week to flush the lines with saline to keep them from clogging. I think I am going to have this thing for the next 14 months. UGH
That night when I was getting ready for bed I noticed there seemed to be quite a bit of blood around the incision and it looked like the lines were right full of blood. This freaked me out a little because I wasn’t sure if it was normal. I called emergency at RUH and they didn’t know but they told me to call the Health Line. They weren’t sure so they told me to call emergency. I said I already talked to them but she said try to talk to someone in oncology. Yeah right this is 11:30 at night! I called back to emergency and she said she could call the oncologist on call but I didn’t think this was serious enough for that. She then put me through to the nurse on the 6th floor because they have cancer patients and deal with PICC lines a lot. That nurse said I probably should come in and have it flushed. The emergency department in the city at midnight is quite a bustling place but fortunately I didn’t have to wait too long though and the nurse at the desk just put me in a room and took care of it. It turned out that once I got under those bright lights it was just the color of the line and there wasn’t any blood in it at all. I felt kind of foolish but she flushed it out anyway and all in all we were only gone about 1 hour counting the driving time to and from.
Now homecare has to come in once per week to flush the lines with saline to keep them from clogging. I think I am going to have this thing for the next 14 months. UGH
Thursday, March 12, 2009
I finally had my appointment at the cancer centre on Tuesday. First I had to give some blood. Then I filled in some forms only to have the nurse ask me the same questions and write my answers on another form. Then I met my oncology doctor and he examined me. After that I was able to get dressed and they came back in and he went over everything that I have done so far and what is to come.
All this time I thought I was having 5 days of injections followed by 17 days off times 4 but that isn’t right. I will be on chemo for over a year! First I will get three drugs – Fluorouracil, Epirubicin, and Cycolphosphamide in one injection every 3 weeks times 3. (This is appropriately called FEC!) Then I will get a drug called Taxotere also one injection every three weeks times 3. At the same time (as the taxotere) they will start me on Herceptin which is also one injection every three weeks but this one will go on for one year. Sometime during all this I will also have 5-6 weeks of radiation but I am not clear on when that will be. At the end of the year I will go on anti HR treatment (something like tamoxifen) for 5 years.
On Wednesday I had my MUGA scan (heart scan). First they take out a tube of blood. Then they mixed it with some radioactive markers and injected it back into me. Then I had to lay on a table same as the bone scan and they scanned my heart for about 10 minutes. Some of the drugs I will be on can damage your heart so this is something I will have to keep doing to make sure that isn't happening.
So that is it in a nutshell. These drugs can have pretty awful side effects and I will have to stay away from any germs. At this point I can hardly imagine doing this for a whole year. I got my call this morning and on March 17 I will get my PICC line installed. That in itself sounds pretty frightening! March 18 will be my first chemo treatment.
All this time I thought I was having 5 days of injections followed by 17 days off times 4 but that isn’t right. I will be on chemo for over a year! First I will get three drugs – Fluorouracil, Epirubicin, and Cycolphosphamide in one injection every 3 weeks times 3. (This is appropriately called FEC!) Then I will get a drug called Taxotere also one injection every three weeks times 3. At the same time (as the taxotere) they will start me on Herceptin which is also one injection every three weeks but this one will go on for one year. Sometime during all this I will also have 5-6 weeks of radiation but I am not clear on when that will be. At the end of the year I will go on anti HR treatment (something like tamoxifen) for 5 years.
On Wednesday I had my MUGA scan (heart scan). First they take out a tube of blood. Then they mixed it with some radioactive markers and injected it back into me. Then I had to lay on a table same as the bone scan and they scanned my heart for about 10 minutes. Some of the drugs I will be on can damage your heart so this is something I will have to keep doing to make sure that isn't happening.
So that is it in a nutshell. These drugs can have pretty awful side effects and I will have to stay away from any germs. At this point I can hardly imagine doing this for a whole year. I got my call this morning and on March 17 I will get my PICC line installed. That in itself sounds pretty frightening! March 18 will be my first chemo treatment.
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