When I was first diagnosed in September 2008, Barry and I spent a lot of time online researching my cancer, and we each independently decided to order the book "Living with Lymphoma: A Patient's Guide" by Elizabeth Adler. It's considered one of the the most respected reference books for my disease, and is recently published, in 2005. Dr Adler is a neurobiologist who was diagnosed with Non-Hodgkins Lymphoma in 1996.
At that time I was unable to read physical books. They were too heavy for my hands to hold in my weakened condition, and I could not concentrate at all. Barry read it and reported that it was a very comprehensive treatment of lymphoma, and recommended that I read it when I could.
In the last month, although my fatigue has not lessened, my weakness has and I have been able to read books again to a limited degree. I managed to read some parts of Dr Adler's book.
Although the book is very scientific, the pages that I took the most inspiration from were the ones where she talked about using guided imagery. It's well known that the state of your mind can influence the state of your body. I downloaded an imagery tape from the internet and loaded it into my iPod just this week. I use the tape during my chemo sessions to visualize the chemicals cleansing my body of the lymphoma cells. Although my jury is still out, it does seem to produce a sense of inner peace that I really need.
Tuesday, February 24, 2009
Cycle five, day one: Rituxan
Yesterday was my day for Rituxan. As usual on a Monday, there was a long wait for treatment. We opted to wait in the lobby instead of the crowded waiting room, where there was a children's choir from a local school singing. They had a lovely sound rising to the roof of the hospital atrium, and made the long wait easier.
The infusion takes three hours and I asked for a room with a bed, as the Benadryl the nurse gives me for side effects always makes me dizzy and sleepy. It's a long time to spend sitting up in a chair if I can't get a room with a bed, although the chairs do recline. However, the bed is much more comfortable and I can lie on my side or my back. I can get very comfy with the head of the bed slightly elevated and a blanket to keep me warm. The nurse complained about the room being very hot but I loved it as Rituxan always gives me chills.
Other than developing a sore throat from the Rituxan, and some stomach upset, my day was OK. Barry brought us a take out lunch from the cafeteria, and I had cream of mushroom soup and a turkey wrap. We were done by 3pm and on our way home.
All in all, it was the best day I have had on Rituxan to date. If one has to be on chemo, a day with few side effects can be a good day.
The infusion takes three hours and I asked for a room with a bed, as the Benadryl the nurse gives me for side effects always makes me dizzy and sleepy. It's a long time to spend sitting up in a chair if I can't get a room with a bed, although the chairs do recline. However, the bed is much more comfortable and I can lie on my side or my back. I can get very comfy with the head of the bed slightly elevated and a blanket to keep me warm. The nurse complained about the room being very hot but I loved it as Rituxan always gives me chills.
Other than developing a sore throat from the Rituxan, and some stomach upset, my day was OK. Barry brought us a take out lunch from the cafeteria, and I had cream of mushroom soup and a turkey wrap. We were done by 3pm and on our way home.
All in all, it was the best day I have had on Rituxan to date. If one has to be on chemo, a day with few side effects can be a good day.
Wednesday, February 18, 2009
Cycle four, day 24
Yesterday was another lab check day at Roswell Park. All was well and I did not need any injections or transfusions.
Today I had an echocardiogram, which is an ultrasound of the heart. My family doctor ordered the test after my annual checkup last month because of my complaints of shortness of breath. Apparently some chemo treatments can cause problems with the heart and he wants to be sure my heart is OK. The test takes about a half an hour and was done at my local hospital.
After lunch I went to my massage therapist. She is a local woman who went to elementary school with my son Steve. Of course, I received permission from my oncologist to have massage treatments. I've been going to therapy to treat pain in my right shoulder and arm, which I have had since my very first Fludarabine infusion back in October. It's never gone away, and it gets worse right after my chemo infusions. Today's massage helped tremendously, and I go back the week after chemo for another therapeutic massage.
Today I had an echocardiogram, which is an ultrasound of the heart. My family doctor ordered the test after my annual checkup last month because of my complaints of shortness of breath. Apparently some chemo treatments can cause problems with the heart and he wants to be sure my heart is OK. The test takes about a half an hour and was done at my local hospital.
After lunch I went to my massage therapist. She is a local woman who went to elementary school with my son Steve. Of course, I received permission from my oncologist to have massage treatments. I've been going to therapy to treat pain in my right shoulder and arm, which I have had since my very first Fludarabine infusion back in October. It's never gone away, and it gets worse right after my chemo infusions. Today's massage helped tremendously, and I go back the week after chemo for another therapeutic massage.
Sunday, February 15, 2009
Niagara Parks Greenhouse
I had really hoped to be well enough to go to Steve & Amy's cottage this weekend. It's nearing the end of a chemo cycle (day 21 today) and that usually means that I have a little more energy. After the long day at Roswell Park on Monday, I rested all week in anticipation of the trip. But after much deliberation, we decided that I wasn't strong enough for a weekend away.
Since we were spending the weekend at home, and it was a beautiful, sunny but cold day today, we decided to go see the flowers at the Niagara Parks Greenhouse. The admission is free, and today, so was the parking. It's all ramped. so pushing the wheeelchair around was simple for Barry. The spring flowers are on display now. There are tropical birds flying around, and the orchids are in bloom. We ran into my step-aunt Brenda with a friend, and we did some catch up of each other's lives. She was kind enough to take this photo of Barry and I.
Since we were spending the weekend at home, and it was a beautiful, sunny but cold day today, we decided to go see the flowers at the Niagara Parks Greenhouse. The admission is free, and today, so was the parking. It's all ramped. so pushing the wheeelchair around was simple for Barry. The spring flowers are on display now. There are tropical birds flying around, and the orchids are in bloom. We ran into my step-aunt Brenda with a friend, and we did some catch up of each other's lives. She was kind enough to take this photo of Barry and I.
Monday, February 9, 2009
Cycle four, day 15
We went to Roswell for a lab check today. I have to go every week during my 'off' weeks, so they can be sure that my white blood cells are not dropping too far and that I don't need a blood transfusion.
Today for some reason they were running really really far behind. Luckily I had asked for a pager so we didn't have to wait in the Chemo/Infusion waiting room, which was really crowded. We waited for three long hours after the blood work before we were paged! That's a hard wait for any cancer patient, and I wasn't the only patient who stretched out on one of the long vinyl sofas in the lobby to wait. It's hard to sit up when all you really want is to be home in bed. I felt badly for a woman near me who was in a wheelchair and clearly uncomfortable with the wait.
After that long wait, we were called in, I was weighed and my blood pressure taken, and the nurse told us that my blood levels were fine and we could go home. I know that it is in my best interests to be checked out every week but it all seemed pointless today.
Barry and I figure that if he leaves his laptop at home on the assumption that it will be a quick visit, then it will be a long wait instead. Today he brought the laptop but forgot the electrical cord, so our theory holds.
Today for some reason they were running really really far behind. Luckily I had asked for a pager so we didn't have to wait in the Chemo/Infusion waiting room, which was really crowded. We waited for three long hours after the blood work before we were paged! That's a hard wait for any cancer patient, and I wasn't the only patient who stretched out on one of the long vinyl sofas in the lobby to wait. It's hard to sit up when all you really want is to be home in bed. I felt badly for a woman near me who was in a wheelchair and clearly uncomfortable with the wait.
After that long wait, we were called in, I was weighed and my blood pressure taken, and the nurse told us that my blood levels were fine and we could go home. I know that it is in my best interests to be checked out every week but it all seemed pointless today.
Barry and I figure that if he leaves his laptop at home on the assumption that it will be a quick visit, then it will be a long wait instead. Today he brought the laptop but forgot the electrical cord, so our theory holds.
Saturday, February 7, 2009
Butterfly Conservatory
Cabin fever has set in for me. I go to Roswell every week, sometimes every day in a week, but I don't go anyplace else. I miss being able to travel but I don't have the stamina to go very far, and sometimes I'm not allowed to go out in public because of my low immune system.
So we decided we could at least take advantage of some local attractions whenever I am not at risk, and at the same time test out which ones are wheelchair accessible. We started with the Niagara Falls Butterfly Conservatory today.
It was a cloudy but mild day today, in the low 40's F. The snow was melting but there was a chill wind blowing. There were only two other cars in the lot when we arrived as it was early in the day. The distance from the car park to the conservatory seemed very long in the cold. It turns out the handicap parking near the door is at the back of the building, but you had to enter via another road.
On buying our tickets we were pleasantly surprised to learn that as my attendant (the person pushing the wheelchair) Barry got free admission! We left our coats in the coat racks as it is quite warm inside the building. We have been there before but it has always been much busier. It's all ramped and there are often families with babies in strollers.
The butterflies were beautiful as always. I wore a bright sweater hoping to attract one, and did get a butterfly landing on my shoulder but didn't get a photo. It was really nice to spend an hour in a warm tropical environment and in fact we went around twice.
Thursday, February 5, 2009
Cycle four, day 10
Wednesday was a scheduled lab check day and as well, we had an appointment with the doctor. I went to Phlebotomy for blood work at noon and then we went to Hematology to wait for the doctor. In the end we saw her Physician's Assistant instead.
The PA checked me over and said I was perfectly on track. My blood counts are exactly where they want them at this stage in my treatment. I had an injection of Neulasta to help the white blood cells grow, as they are expected to drop further in the next couple of weeks.
We learned that Roswell does not do maintenance Rituxan treatments after chemo as my local hospital would have done. Instead I will go for a CT Scan every three months for two years to track any recurrence of the disease. After that I will go every six months.
We were all done by 1:15pm. Because it was after lunch and we had not eaten, we decided to go to the hospital cafeteria for lunch. I must say, as cafeterias go it seems quite nice to me. There is a salad bar, and daily specials of soup, pizza, grilled gourmet sandwiches and a hot meal like fish or chicken. I usually have the soup special and it is always tasty. The water is free and lunch came in at under $9.00 for both of us.
I have to go for lab checks every week now as they want to watch me closely for any drop in the white blood cells or neutrophils. We did this last month too and it seemed tiresome, but the PA assured us that it is necessary.
The PA checked me over and said I was perfectly on track. My blood counts are exactly where they want them at this stage in my treatment. I had an injection of Neulasta to help the white blood cells grow, as they are expected to drop further in the next couple of weeks.
We learned that Roswell does not do maintenance Rituxan treatments after chemo as my local hospital would have done. Instead I will go for a CT Scan every three months for two years to track any recurrence of the disease. After that I will go every six months.
We were all done by 1:15pm. Because it was after lunch and we had not eaten, we decided to go to the hospital cafeteria for lunch. I must say, as cafeterias go it seems quite nice to me. There is a salad bar, and daily specials of soup, pizza, grilled gourmet sandwiches and a hot meal like fish or chicken. I usually have the soup special and it is always tasty. The water is free and lunch came in at under $9.00 for both of us.
I have to go for lab checks every week now as they want to watch me closely for any drop in the white blood cells or neutrophils. We did this last month too and it seemed tiresome, but the PA assured us that it is necessary.
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