We're home now. We waved goodbye to New Zealand with regret, having had such a lovely 7 weeks there. The weather was variable, as spring weather usually is, but having said that, I wore sandals instead of shoes most days, and only once had to wear my heavier rain jacket with fleece underneath. We did seem to get more than our share of wet, windy weekends though (but I'm not complaining).
We didn't explore as much as we usually do, mostly because of my fatigue level, although we did try to walk most days. We had some very windy days when it was uncomfortable to be outside at all. I found travel days very tiring, and didn't do any driving over there by myself as I usually do.
We had a few hours in the wonderful Koru Club Lounge at the Auckland Airport before our flight. Not only was the club large and quiet, but it had individual newly remodeled bathroms with showers, all amenities provided, and also free 20 minute back massages in a private suite. We both took advantage of the showers and massage. A constantly replenished buffet, free drinks and free wireless were all part of the service.
We were able to change our seats in the business class upstairs seating area of the 747 so that they were one in front of the other, much easier for quiet conversation than the across-the-aisle format of the flight going out. I had my bed set up as soon as we were at cruising altitude and took my meals at Barry's table, going back to bed between courses. Travelling business class really spoils one for future airline travel!
Friday, December 11, 2009
Monday, November 30, 2009
Another bach
On our last full weekend in NZ, we rented yet another bach on the Kapiti Coast, just an hour north of Wellington. It must have been someone's home at one time, because it was huge, 3 bedrooms, a master bath ensuite, a glass enclosed vine covered outdoor eating area, and the usual kitchen, living room and dining room , in a bungalow on 3 acres with a view of the ocean. It was a rainy, misty sort of weekend, and Kapiti Island kept appearing and disappearing out of the fog. We thought we were on an episode of 'Lost'.
There was a narrow track through the beach grasses and over the dunes to the beach, long and flat and dominated by the island off the coast. This was the most isolated bach we have stayed in, and we'll go back again if we can.
There was a narrow track through the beach grasses and over the dunes to the beach, long and flat and dominated by the island off the coast. This was the most isolated bach we have stayed in, and we'll go back again if we can.
Monday, November 23, 2009
Mataikona bach
New Zealand apparently has almost as much coastline as the continental U.S., although it is only the size of Colorado. It is said that no place is more than 47 minutes from the sea, close enough that anyone can drive to the beach for the day. Still, there is nothing like watching the tides coming in and out from your front window.
As we have travelled around New Zealand, we have found that on our free weekends we prefer to stay in rented cottages on the coast with sea views. We research them on the internet, and so far each bach has lived up to our expectations. We arranged for three nights at this typical bach on the ocean.
It was a very windy weekend, and on our first day there, we attempted to visit the lighthouse at Castlepoint, but the warnings were up not to attempt the steps in windy weather as it is considered too dangerous. As the sand was blowing in our faces and the wind nearly knocked us off our feet, we just drove back to the bach. The next day was quieter and we were able to walk up the narrow path and stairs to the lighthouse and beyond. Barry took this fabulous photo of the lighthouse and the barrier reef and lagoon beyond.
We were slightly discomforted to discover that from Castlepoint to Mataikona is a Tsunami hazard zone.
As we have travelled around New Zealand, we have found that on our free weekends we prefer to stay in rented cottages on the coast with sea views. We research them on the internet, and so far each bach has lived up to our expectations. We arranged for three nights at this typical bach on the ocean.
It was a very windy weekend, and on our first day there, we attempted to visit the lighthouse at Castlepoint, but the warnings were up not to attempt the steps in windy weather as it is considered too dangerous. As the sand was blowing in our faces and the wind nearly knocked us off our feet, we just drove back to the bach. The next day was quieter and we were able to walk up the narrow path and stairs to the lighthouse and beyond. Barry took this fabulous photo of the lighthouse and the barrier reef and lagoon beyond.
We were slightly discomforted to discover that from Castlepoint to Mataikona is a Tsunami hazard zone.
Thursday, November 19, 2009
Te Mata peak
We spent a few days in Hastings on the Bay of Plenty. There is a long windy road that leads up to the Te Mata peak, 400 m above sea level, with panoramic views in every direction, and overlooking some wineries and the bay. Parts of the road are one lane wide and are carved into the side of a cliff. I must admit, I had forgotten just how scary the road was since we were last there.
But once you get there, the view was fabulous.
But once you get there, the view was fabulous.
Thursday, November 12, 2009
Tin art
I love these metal representations of animals that seem to be all over New Zealand. These two llamas were in the town centre of Wellsford, north of Auckland.
Wednesday, November 11, 2009
Muriwai Bach
We've stayed at Muriwai before, 2 years ago. It's a black sand beach just 1 hour west of Auckland with a very large gannet colony. We loved the beach and walks out there and decided to go back when we had a long weekend in Auckland. We ended up staying out there for five days!
The bach we had booked before was no longer available so we rented a different one, still high on the hill above Muriwai for the best views. It had amazing views from the living room and the bedroom. It too, had a long flight of stairs to get to the front door. And then a flight of stairs to get to the main living level. Then another flight of stairs to the loft master bedroom and ensuite. I didn't need any additional exercise while we were staying there.
The bach we had booked before was no longer available so we rented a different one, still high on the hill above Muriwai for the best views. It had amazing views from the living room and the bedroom. It too, had a long flight of stairs to get to the front door. And then a flight of stairs to get to the main living level. Then another flight of stairs to the loft master bedroom and ensuite. I didn't need any additional exercise while we were staying there.
Thursday, November 5, 2009
Boating in the Coromandel
As I mentioned before, boaters take their boats out into the ocean by way of ramps into streams or bays. Here is a line-up of boats we passed one afternoon as we were leaving the Coromandel Peninsula all waiting patiently to get their boats loaded onto the trailers and away.
Friday, October 30, 2009
The Driving Creek Railway
During our two weeks in the Coromandel Peninsula, we decided to take a trip along the Driving Creek Railway, New Zealand's only narrow-gauge train ride.
The one-hour return Coromandel train ride takes you through replanted native kauri forest and includes two spirals, three short tunnels, five reversing points and several large viaducts as it climbs up to the Eye-Full (!) Tower at the top of the mountain.
The railway was started in 1975 as a way for the owner to get native clay and pinewood for his potteries which were at the base of the mountain. After 15 years of construction he decided to open his railway to the public, and has built three passenger trains and extended the tracks every year since then. As they harvest the pine trees which were planted by early settlers, they are replanting native Kauri trees which would once have covered the entire area in huge forests.
Check out this web site for an animated clip of the train route: http://www.drivingcreekrailway.co.nz/Train_Ride.cfm
Monday, October 26, 2009
Tractors in Opiti Beach
On our first weekend at Matarangi, our friends Harley & Lilian came up to visit. As they are familiar with the area they took us for a driving tour. We went out a long windy narrow road to the beach community at Opiti.
Especially in the beach communities where we like to stay, boats are everywhere, but because New Zealand is surrounded by ocean, and there are tides, people generally do not keep their boats tied up at docks. Cities have marinas, but otherwise, they take their boats to the beach or boat ramp every time they want to go out on the water. Sometimes its quite nerve-wracking to come around a corner on a narrow road to be faced with a car towing a behemoth boat to the nearby ramp.
Opiti was unusual for us, in that every home or bach seemed to have an old tractor parked in the yard. We watched a tractor pull a boat trailer up a narrow stream crossing the beach to where it could access the road. Harley explained that people do not like to put their cars in the salt water so they will keep a tractor at the bach to tow the boat and trailer to the beach. One house had two tractors in the yard.
Especially in the beach communities where we like to stay, boats are everywhere, but because New Zealand is surrounded by ocean, and there are tides, people generally do not keep their boats tied up at docks. Cities have marinas, but otherwise, they take their boats to the beach or boat ramp every time they want to go out on the water. Sometimes its quite nerve-wracking to come around a corner on a narrow road to be faced with a car towing a behemoth boat to the nearby ramp.
Opiti was unusual for us, in that every home or bach seemed to have an old tractor parked in the yard. We watched a tractor pull a boat trailer up a narrow stream crossing the beach to where it could access the road. Harley explained that people do not like to put their cars in the salt water so they will keep a tractor at the bach to tow the boat and trailer to the beach. One house had two tractors in the yard.
Thursday, October 22, 2009
Texas to New Zealand
From Austin we travelled to Auckland, New Zealand. We were quite concerned about the fact that it is two flights from Austin to Los Angeles, and then a 13 hour overnight flight to Auckland. This is a trip that is exhausting at the best of times, and we thought that it would be very difficult for me. We decided that this once we would fly business class for the last leg, from LAX to Auckland.
Because we flew business class we had access to Air New Zealand's first class lounge in LAX, the Koru Club. The best thing about the Koru Club is the beautifully appointed private showers. After a long day of travelling, they were just the thing to freshen us up. Towels and shampoo are provided. The lounge has comfy leather armchairs, free drinks, wireless internet and a never ending buffet for light meals and snacks. Our flight left at 10:30 pm Pacific time, which is 1:30 AM Fort Erie time. A very long time indeed!
Air NZ has lie flat beds in business class for their Pacific flights. We were assigned seats in the upper deck of a 747. It's a small cabin, and each business class seat is angled away from the window and toward the centre aisle of the plane, with a low wall around it, so every seat is private. You can't really talk to your neighbor, and in fact Barry and I had seats in the same row across the aisle from each other so we could see each other but only communicate non-verbally.
Because the leather seats have an airbag in the seatbelt, you can recline while taking off and landing. You can choose to have an early meal instead of the full dinner service and go to bed soon after takeoff. When you are ready, the attendant will unfold the seat into a long, narrow, although firm, bed. There is a cover for the bed, and a pillow and duvet for warmth. The personal TV pulls out from the wall so you can watch it from the seat or from the bed.
We did stay up for the dinner service, so it was more like 3:30 am Fort Erie time before we were able to lie down to sleep. If I ever take this flight again, I will take the light meal and go to sleep sooner.
We slept well, although Barry woke earlier than I did, as he usually does. I got a full 8 hours, waking just as the breakfast service was coming around.
The day of our arrival was long as well, because we had to pick up our rental car, go grocery shopping and drive 3 ½ hours to the bach in the Coromandel Peninsula which would be our home for the next 12 days. We were both grateful that we had had so much sleep on the plane. I was very tired by the time we got there, and in fact I spent the next couple of days resting.
Wednesday, October 21, 2009
A visit to Austin
On October 13 we flew to Austin, Texas for Barry to present at a conference. It was the first time I had flown in over a year, since well before my chemo, and I was nervous about the length of the trip. We flew from Buffalo to Washington DC, had a layover in Washington and then flew on to Austin. With a taxi ride at both ends and the layover time, we were travelling for almost ten hours. I had a rest when we arrived and still had energy to go out to dinner with a friend.
Although Barry was busy with the conference we went out to dinner with friends every night. The weather was over 90 degrees during our first few days and I spent some time around the outdoor pool. The Hilton is close to downtown and there were many restaurants close by. We also walked by the river most days. Here we are having dinner with our old friends Rodger, and Ray and Elsie.
One of the most interesting things about Austin is the bat colony that roosts under the Congress Ave bridge. It is the largest urban bat colony in North America and every night around sunset the entire colony of about 1.5 million bats erupts from under the bridge in dark streams. Hundreds of people go there every evening around sunset and wait for up to an hour for the bats to appear. The night we went the bats erupted quite late but we were able to get a spot on a dock downstream from the bridge and saw the bats clearly against the night sky.
Saturday, September 26, 2009
First Anniversary
Today, September 26, is the anniversary of the day I was diagnosed with Lymphoma. Every cancer survivor remembers that date forever. I remember the doctor's appointment as if it were only yesterday, and yet I have experienced so much in the year since.
We went out to dinner that evening because we were so late leaving the hematologist's office. It was a Friday, and the hematologist wanted me to start chemo on Monday. He kept talling about my disease, and not until directly asked did he admit that it was cancer. We were numb. We ran into some friends in the restaurant and didn't tell them. We didn't know what to say, couldn't process the information.
We spent the weekend on the web, learning all we could about this disease. We phoned the kids. By Sunday we had talked with another oncologist and plans were underway for a second opinion. We began to learn all we could about our U.S. medical insurance that we had rarely used, as the new oncologist was in Buffalo NY. We researched all the possible chemotherapy regimens for my disease, and the side effects down the road from them. In the end, I started chemo a month later at Roswell Park in Buffalo, with a different chemo regimen than the first hematologist had suggested.
Once the chemo started, I had no energy to do anything, and found it difficult to spend time anywhere but my bed. It's hard to remember now, but I would go downstairs but once a day, for dinner, and often had to go back upstairs to bed before dinner was even over. I didn't have the strength to hold a book in my hands and so borrowed lots of audiobooks from the Library and other sources. I didn't have the strength to sit up in the living room to watch TV so Barry bought me a TV for the bedroom. I didn't have the strength to stand in the shower and so we bought a shower chair that I could sit in while showering.
Many cancer survivors look beyond the medical profession for help, and I was no exception. I downloaded Guided Imagery tapes from many sources, and listened to them for at least an hour or two each day, for help with healing images and positive affirmations. There are some that help you visualize the chemotherapy that is going into your body as a fountain of pure healing light washing away the bad cells.
I subscribed to mailing lists for people with my type of cancer, but found that the stories were upsetting to read, and after a while I had to cut back on how often I read them.
We ordered books on Lymphoma, but only Barry read them for I had developed chemo brain, a type of brain fog, and could not retain what I read (and could not hold the book anyway).
I learned that we had some really good friends and family who cared about me. I received emails and cards galore, and made up a small album so I could read them over regularly. We received casseroles and biscotti, flowers and plants, a prayer blanket, a healing shawl and two quilts from special family members.
I heard about Wellspring, an association in my very own community that offered programs for cancer survivors and their families. Although I was too fatigued to attend many classes during my chemo, as soon as it was over I signed up for yoga once a week, and then for QiGong as well. I now go 3 mornings a week for those classes and a relaxation class. Volunteers make hats and teddy bears and quilts for cancer patients to have a little sign that someone cares. There is always someone there to give you a shoulder to cry on.
I want to thank my husband, Barry, from the bottom of my heart for all the support he has given. From the very first he has held me, and cried with me, and comforted me, and driven me to all of my appointments, brought me meals in bed, cooked, cleaned, done laundry, groceries, talked to people on the phone who called to see how I was doing, while holding down a full time job and taking care of our house and yard. He is my rock.
We went out to dinner that evening because we were so late leaving the hematologist's office. It was a Friday, and the hematologist wanted me to start chemo on Monday. He kept talling about my disease, and not until directly asked did he admit that it was cancer. We were numb. We ran into some friends in the restaurant and didn't tell them. We didn't know what to say, couldn't process the information.
We spent the weekend on the web, learning all we could about this disease. We phoned the kids. By Sunday we had talked with another oncologist and plans were underway for a second opinion. We began to learn all we could about our U.S. medical insurance that we had rarely used, as the new oncologist was in Buffalo NY. We researched all the possible chemotherapy regimens for my disease, and the side effects down the road from them. In the end, I started chemo a month later at Roswell Park in Buffalo, with a different chemo regimen than the first hematologist had suggested.
Once the chemo started, I had no energy to do anything, and found it difficult to spend time anywhere but my bed. It's hard to remember now, but I would go downstairs but once a day, for dinner, and often had to go back upstairs to bed before dinner was even over. I didn't have the strength to hold a book in my hands and so borrowed lots of audiobooks from the Library and other sources. I didn't have the strength to sit up in the living room to watch TV so Barry bought me a TV for the bedroom. I didn't have the strength to stand in the shower and so we bought a shower chair that I could sit in while showering.
Many cancer survivors look beyond the medical profession for help, and I was no exception. I downloaded Guided Imagery tapes from many sources, and listened to them for at least an hour or two each day, for help with healing images and positive affirmations. There are some that help you visualize the chemotherapy that is going into your body as a fountain of pure healing light washing away the bad cells.
I subscribed to mailing lists for people with my type of cancer, but found that the stories were upsetting to read, and after a while I had to cut back on how often I read them.
We ordered books on Lymphoma, but only Barry read them for I had developed chemo brain, a type of brain fog, and could not retain what I read (and could not hold the book anyway).
I learned that we had some really good friends and family who cared about me. I received emails and cards galore, and made up a small album so I could read them over regularly. We received casseroles and biscotti, flowers and plants, a prayer blanket, a healing shawl and two quilts from special family members.
I heard about Wellspring, an association in my very own community that offered programs for cancer survivors and their families. Although I was too fatigued to attend many classes during my chemo, as soon as it was over I signed up for yoga once a week, and then for QiGong as well. I now go 3 mornings a week for those classes and a relaxation class. Volunteers make hats and teddy bears and quilts for cancer patients to have a little sign that someone cares. There is always someone there to give you a shoulder to cry on.
I want to thank my husband, Barry, from the bottom of my heart for all the support he has given. From the very first he has held me, and cried with me, and comforted me, and driven me to all of my appointments, brought me meals in bed, cooked, cleaned, done laundry, groceries, talked to people on the phone who called to see how I was doing, while holding down a full time job and taking care of our house and yard. He is my rock.
Thursday, September 24, 2009
Unremarkable results
Yesterday I went for my first checkup in two months. I had my fourth CT Scan last week and bloodwork done yesterday.
The radiology report said that there is no evidence of lymphadenopathy in my chest, abdomen or pelvis, and the the results were "unremarkable". I guess this means that nothing was found. My lymph nodes are apparently back to a normal size.
Although my hemoglobin and white blood cell count are still below normal, the neutrophil count is now in the normal range, and this is an important indicator that my immune system is doing better.
All in all, a very good checkup! I go back in January for another round of tests.
Although I have a head cold right now and am feeling under the weather, I had started to feel less fatigue, and now estimate that I am back to 80% of normal functioning.
The radiology report said that there is no evidence of lymphadenopathy in my chest, abdomen or pelvis, and the the results were "unremarkable". I guess this means that nothing was found. My lymph nodes are apparently back to a normal size.
Although my hemoglobin and white blood cell count are still below normal, the neutrophil count is now in the normal range, and this is an important indicator that my immune system is doing better.
All in all, a very good checkup! I go back in January for another round of tests.
Although I have a head cold right now and am feeling under the weather, I had started to feel less fatigue, and now estimate that I am back to 80% of normal functioning.
Wednesday, July 22, 2009
3 month checkup: Passed!
Yesterday was the day for my 3 month checkup with my oncologist. We had been a little worried because last month's blood work showed that my white blood cell count was still quite a bit below normal, and my hemoglobin had dropped to 11.2 (normal is 12.5-16.0).
In reading the blogs of other cancer patients, it turns out that everyone who has been diagnosed with cancer approaches each follow up appointment with anxiety. The fear, of course, is that the cancer will have returned.
However, my oncologist and her P.A. were both happy with my progress, and explained that the Fludarabine I was on is very hard to recover from, and that my bone marrow is just not functioning at a robust level at the moment. Even though my white blood cell count is low, they do not want me to curtail my activities in any way. My hemoglobin is back up to 11.8, and they told me that they would not worry as long as it is in the 11.0 to 12.5 range.
I am still somewhat fatigued, but better than I was 2 months ago. Barry and I go for walks when it is not raining, and I can walk 2 kilometres or so, sometimes more. I will just have to accept that it is going to take longer than I expected to recover from the chemo.
I have a CT Scan scheduled for the end of September and that will tell us how my lymph nodes are doing.
We have been very busy visiting family on weekends and having family visit us. We've had Carol & Brian come to stay for a couple of days, Cristen & Lucia & Emma came for 5 days, Steve & Amy came for the same weekend, and Dad & Donna came to lunch on their way to her niece's wedding in Fort Erie. We've driven to Ann Arbor for a weekend, to Stratford for a weekend to meet up with Cristen, Goncalo, Lucia & Emma, to Steve and Amy's cottage and to my Dad's cottage to visit with my aunt and cousins from New Jersey. All that driving and visiting, it's no wonder I have been tired!
Several people have told me that they have worried about me because I have not been keeping up with the blog. I’ll try to stay more current from now on as I continue to recover.
Fathers Day June 09
In reading the blogs of other cancer patients, it turns out that everyone who has been diagnosed with cancer approaches each follow up appointment with anxiety. The fear, of course, is that the cancer will have returned.
However, my oncologist and her P.A. were both happy with my progress, and explained that the Fludarabine I was on is very hard to recover from, and that my bone marrow is just not functioning at a robust level at the moment. Even though my white blood cell count is low, they do not want me to curtail my activities in any way. My hemoglobin is back up to 11.8, and they told me that they would not worry as long as it is in the 11.0 to 12.5 range.
I am still somewhat fatigued, but better than I was 2 months ago. Barry and I go for walks when it is not raining, and I can walk 2 kilometres or so, sometimes more. I will just have to accept that it is going to take longer than I expected to recover from the chemo.
I have a CT Scan scheduled for the end of September and that will tell us how my lymph nodes are doing.
We have been very busy visiting family on weekends and having family visit us. We've had Carol & Brian come to stay for a couple of days, Cristen & Lucia & Emma came for 5 days, Steve & Amy came for the same weekend, and Dad & Donna came to lunch on their way to her niece's wedding in Fort Erie. We've driven to Ann Arbor for a weekend, to Stratford for a weekend to meet up with Cristen, Goncalo, Lucia & Emma, to Steve and Amy's cottage and to my Dad's cottage to visit with my aunt and cousins from New Jersey. All that driving and visiting, it's no wonder I have been tired!
Several people have told me that they have worried about me because I have not been keeping up with the blog. I’ll try to stay more current from now on as I continue to recover.
Fathers Day June 09
Tuesday, May 19, 2009
May long weekend
This year my birthday fell on Victoria Day of the May long weekend, so we decided to go visit Steve & Amy at their cottage. The four hour drive wasn't quite as hard on me as it was when we did it in March, so I am getting stronger. It wasn't warm enough to sit outside but they have a nice sunporch where we could sit and watch the river.
The cottage is outfitted with a vintage record player and a set of old vinyl records, and we brought some more from our friend Doug to add to the collection, so we spent the weekend enjoying listening to vintage music. There was a mix of 33's, 45's and 78's. Barry was hopping up and down all weekend changing records.
Carol & Brian drove all the way from Pakenham to have lunch with us and visit on Sunday afternoon. We hadn't seen them since last summer so it was good to visit.
We left early Monday afternoon to beat the traffic, and had dinner in a Kelsey's in Mississauga. This was my first outing to a restaurant in many months. Here's a photo of my (free) dessert and the sparkler lighting it up. Our server even gave me a personalized birthday card!
The cottage is outfitted with a vintage record player and a set of old vinyl records, and we brought some more from our friend Doug to add to the collection, so we spent the weekend enjoying listening to vintage music. There was a mix of 33's, 45's and 78's. Barry was hopping up and down all weekend changing records.
Carol & Brian drove all the way from Pakenham to have lunch with us and visit on Sunday afternoon. We hadn't seen them since last summer so it was good to visit.
We left early Monday afternoon to beat the traffic, and had dinner in a Kelsey's in Mississauga. This was my first outing to a restaurant in many months. Here's a photo of my (free) dessert and the sparkler lighting it up. Our server even gave me a personalized birthday card!
Recovery week five
I'm now in week five of my recovery from chemo. It's been slower than I would like, and sometimes I get frustrated at how long it is taking me to recover. But I have to remember that my oncologist said that it would take three months for me to get my energy back and so I must be patient. I have up days and down days, and overall it's two steps forward and one step back, but I am slowly getting better.
I try to walk every day and I can walk for up to a mile on a good day. We often walk the bicycle path in front of our home, and we also like to go to Dufferin Islands and walk there amongst the streams and the ducks and geese. We have also walked parts of the Friendship Trail in Fort Erie.
Twice a week I go to Wellspring Cancer Support Centre in Stevensville for a yoga class and a relaxation class. I'm now able to drive myself there as it's only a ten minute drive. They have a lending library of cancer books and videos and also offer Tai-Chi classes and Reiki, a kind of hands-free energy healing.
I try to walk every day and I can walk for up to a mile on a good day. We often walk the bicycle path in front of our home, and we also like to go to Dufferin Islands and walk there amongst the streams and the ducks and geese. We have also walked parts of the Friendship Trail in Fort Erie.
Twice a week I go to Wellspring Cancer Support Centre in Stevensville for a yoga class and a relaxation class. I'm now able to drive myself there as it's only a ten minute drive. They have a lending library of cancer books and videos and also offer Tai-Chi classes and Reiki, a kind of hands-free energy healing.
Thursday, May 7, 2009
A beautiful weekend for camping
Two weekends ago the weather forcasters were predicting a hot weekend for Friday through Monday (in April!). It's early in the year for camping but we decided to go for it. It was a long hard winter for us and my inability to go anywhere had kept us cooped up. We had to cancel our March camping trip to Florida because of my chemo. We had been looking forward to our first camping trip for months. As the camper had been winterized and everything taken out, Barry had to spend some time getting everything packed inside again. I was too fatigued to help and could contribute only my knowledge of where things are normally stored.
We went to Allegany State Park in New York State. It's one of our favourites and under a two hour drive away, in the hills south of Buffalo. We usually go in the autumn when it is absolutely stunning with all the trees turning colour. We got a campsite right beside a little stream and under the (leafless) trees. There were very few other campers there even though the weather was in the high 70's. We walked around the hilly campground every day and even went for a little walk along the streambed. We sat in our chairs beside the firepit listening to the birds and watching the stream burble its way over the rocks down below.
I had been nervous about going away with my level of fatigue but everything worked out well. Barry did all of the cooking of course and we have a camp chair that is like a recliner for me to rest in. We had the camper for me to lie down in when I got really tired.
All in all it was a terrific break and well worth doing. Good memories to keep me going through the rainy days.
We went to Allegany State Park in New York State. It's one of our favourites and under a two hour drive away, in the hills south of Buffalo. We usually go in the autumn when it is absolutely stunning with all the trees turning colour. We got a campsite right beside a little stream and under the (leafless) trees. There were very few other campers there even though the weather was in the high 70's. We walked around the hilly campground every day and even went for a little walk along the streambed. We sat in our chairs beside the firepit listening to the birds and watching the stream burble its way over the rocks down below.
I had been nervous about going away with my level of fatigue but everything worked out well. Barry did all of the cooking of course and we have a camp chair that is like a recliner for me to rest in. We had the camper for me to lie down in when I got really tired.
All in all it was a terrific break and well worth doing. Good memories to keep me going through the rainy days.
Friday, May 1, 2009
In Remission!
Since my chemo is now over, and I've had a CT Scan, my next appointment at Roswell Park was for last Wednesday afternoon. We met with the Doctor's PA, Diane. She told us that the results of the CT scan were negative, that is, no enlarged lymph nodes detected. This and my blood tests mean that I am officially in remission now.
I go back to Roswell Park for a blood check every month for three months, then every three months for a while. I'll have another CT Scan in September.
I'm still very tired and finding my days long. I try to walk every day but we have had some days with nothing but rain. Nevertheless, on the days when I do walk I am going between 1-1.5 km. Unfortunately I pay a price for that and have to spend more time resting afterwards.
Still, a remission is good news and worth celebrating.
I go back to Roswell Park for a blood check every month for three months, then every three months for a while. I'll have another CT Scan in September.
I'm still very tired and finding my days long. I try to walk every day but we have had some days with nothing but rain. Nevertheless, on the days when I do walk I am going between 1-1.5 km. Unfortunately I pay a price for that and have to spend more time resting afterwards.
Still, a remission is good news and worth celebrating.
Tuesday, April 21, 2009
I still have my hair, but...
...the curls are missing. It still has a few waves, but it won't curl. I first noticed my straighter hair two months ago, but put it down to the fact that this winter is so dry and my hair does require some humidity to curl. I wasn't feeling well enough to fuss with it, and spending so much time in bed means that it doesn't always look its best anyway.
But now I'm sure. My hairdresser is leaving it a little longer because she says it won't flatten out in bed so much, so it should be curlier than usual. But after my last haircut, there is definitly no curl left. It started to rain during our walk today, and it should have had my hair turning frizzy.
A friend mentioned someone she knew whose brown straight hair fell out during chemo and it grew back in black and curly. Later it grew back as it had been before. So I guess I just have to wait until all of the chemo is out of my system and hope my hair grows back with its usual curls.
But now I'm sure. My hairdresser is leaving it a little longer because she says it won't flatten out in bed so much, so it should be curlier than usual. But after my last haircut, there is definitly no curl left. It started to rain during our walk today, and it should have had my hair turning frizzy.
A friend mentioned someone she knew whose brown straight hair fell out during chemo and it grew back in black and curly. Later it grew back as it had been before. So I guess I just have to wait until all of the chemo is out of my system and hope my hair grows back with its usual curls.
Thursday, April 16, 2009
Third CT scan
I had my third CT scan on Wednesday. This was my first time back at Roswell in two weeks. I had drunk the Barium Sulphate smoothie and was all prepped for the scan, IV line inserted as well, when the nurse asked if I had any questions. I mentioned the reaction I had last time, immediately after my January scan, when my fingers turned red and began to itch. It had been a short half-hour reaction and I had forgotten to mention it to my doctor.
The nurse said I'd had an allergic reaction to the CT scan iodine dye, and that a second reaction could be much worse. I would not be able to go ahead with the CT scan. I would have to be rescheduled for a day when I could be given meds for the reaction, one 12 hours ahead of the scan and one 2 hours ahead of the scan. The IV line was taken out.
In the end the radiologist agreed that I could have the CT scan without the iodine dye, as the GI tract would still show because I had drunk the Barium Sulphate. Now I have to wait and see if my oncologist wants me to have another scan with the iodine dye and the preparatory medicines so the lymph nodes will show. I learned a lesson from this: tell the doctor about all reactions. Oh well.
The nurse said I'd had an allergic reaction to the CT scan iodine dye, and that a second reaction could be much worse. I would not be able to go ahead with the CT scan. I would have to be rescheduled for a day when I could be given meds for the reaction, one 12 hours ahead of the scan and one 2 hours ahead of the scan. The IV line was taken out.
In the end the radiologist agreed that I could have the CT scan without the iodine dye, as the GI tract would still show because I had drunk the Barium Sulphate. Now I have to wait and see if my oncologist wants me to have another scan with the iodine dye and the preparatory medicines so the lymph nodes will show. I learned a lesson from this: tell the doctor about all reactions. Oh well.
Tuesday, April 14, 2009
More walking
Over the long Easter weekend we went to the Dufferin Islands nature preserve every day. It was sunny but quite cold for the time of year. It's close to the river and that means that the ice still in the river keeps areas nearby colder.
There is very little sign of spring yet but the forsythia are just showing a few green buds.
I finally found my pedometer at home and measured the walks as being around 1km to do a circuit, about 15-20 minutes for me. We saw lots of families with bread to feed the ducks and geese. I found the walking to be easy and it gives me hope that I will recover soon from the fatigue.
On Sunday we took the campervan and stopped at Chippawa Park to have a picnic lunch, but it was too cold to sit outdoors so we ate in the van, with the heater on! Still, there were plenty of family groups all bundled up having their picnic lunch outdoors at the picnic tables. A couple parked beside us started out at a picnic table but soon retreated to their car to eat. I guess everybody is anxious for spring to arrive.
There is very little sign of spring yet but the forsythia are just showing a few green buds.
I finally found my pedometer at home and measured the walks as being around 1km to do a circuit, about 15-20 minutes for me. We saw lots of families with bread to feed the ducks and geese. I found the walking to be easy and it gives me hope that I will recover soon from the fatigue.
On Sunday we took the campervan and stopped at Chippawa Park to have a picnic lunch, but it was too cold to sit outdoors so we ate in the van, with the heater on! Still, there were plenty of family groups all bundled up having their picnic lunch outdoors at the picnic tables. A couple parked beside us started out at a picnic table but soon retreated to their car to eat. I guess everybody is anxious for spring to arrive.
Thursday, April 9, 2009
No hospital visit this week
This was my first week in a long time when I had no visits to Roswell Park. I had gotten used to the weekly visits, whether for chemo or for lab checks, and it seemed strange to not go. I did have a hair appointment and a massage, so that made up for it a bit.
I figure that this month I am hitting the lowest of the low, being at the end of my chemo with all of its cumulative effects. Barry likens it to the stock market, which hit such lows recently but is now slowly starting to recover. The stock market crash started about the same time as my cancer story, too, last September. Just like the Dow Jones Index, I have up days and down days, hopefully more up days than down days in the weeks to come.
Today we walked to the mailbox to get the mail, and I managed to walk past 3 more driveways down the road before we turned around to come back. This might not seem like much of an achievement, but for me it was a milestone, as every other trip to the mailbox had me pushing myself just to get there and back.
If all goes well, I will be able to do more and more each day from now on as I struggle to recover from all of the chemo. I'm planning to find my pedometer and using it to track my progress in walking: 4 driveways next time.
I figure that this month I am hitting the lowest of the low, being at the end of my chemo with all of its cumulative effects. Barry likens it to the stock market, which hit such lows recently but is now slowly starting to recover. The stock market crash started about the same time as my cancer story, too, last September. Just like the Dow Jones Index, I have up days and down days, hopefully more up days than down days in the weeks to come.
Today we walked to the mailbox to get the mail, and I managed to walk past 3 more driveways down the road before we turned around to come back. This might not seem like much of an achievement, but for me it was a milestone, as every other trip to the mailbox had me pushing myself just to get there and back.
If all goes well, I will be able to do more and more each day from now on as I struggle to recover from all of the chemo. I'm planning to find my pedometer and using it to track my progress in walking: 4 driveways next time.
Wednesday, April 1, 2009
Cycle six, day 9: Neulasta
On Tuesday I had my monthly shot of Neulasta to help my white blood cells grow. It was the most efficient visit we've ever had at Roswell. We waited only a minute or two for the appointment, and Barry barely had his laptop open before the nurse called me. A few minutes for the shot and we were out of there. I have some hip and thigh pain today but it is not too bad. (later note: the hip and thigh pain lasted for 9 days, and was especially bad in the evenings.)
For the first time I will have a week off, as there are no visits to Roswell scheduled for next week. I won't know what to do with myself on Tuesday!
For the first time I will have a week off, as there are no visits to Roswell scheduled for next week. I won't know what to do with myself on Tuesday!
Tuesday, March 31, 2009
Weekend away
We decided that the time had come to take a weekend trip. We were both feeling some cabin fever, and we wanted to see Steve & Amy before they go travelling, so we decided to go to the cottage with them. We drove up Saturday morning, a beautiful day with temperatures in the 50's.
It's a four hour drive so I was a little apprehensive about spending so much time sitting up. We surrounded me with pillows and the car seat reclines really far back so the trip wasn't too bad. Once at the cottage I headed straight for the big leather recliner in the living room which became my spot for the weekend. For the rest of Saturday I was OK but on Sunday I had to spend most of the day in bed. Monday morning we drove back and stopped at Dad & Donna's for lunch and a short visit, and then back on the road for the rest of the drive home.
It was wonderful to have the change of scenery for a few days and to get in a visit with some of our family, but I don't think I'll be doing it again soon. Here is a photo of me reading in the big leather recliner on the weekend.
It's a four hour drive so I was a little apprehensive about spending so much time sitting up. We surrounded me with pillows and the car seat reclines really far back so the trip wasn't too bad. Once at the cottage I headed straight for the big leather recliner in the living room which became my spot for the weekend. For the rest of Saturday I was OK but on Sunday I had to spend most of the day in bed. Monday morning we drove back and stopped at Dad & Donna's for lunch and a short visit, and then back on the road for the rest of the drive home.
It was wonderful to have the change of scenery for a few days and to get in a visit with some of our family, but I don't think I'll be doing it again soon. Here is a photo of me reading in the big leather recliner on the weekend.
Thursday, March 26, 2009
Cycle six, day 4: last chemo
I had my last day of chemo today. I will have one more Neulasta shot to help my immune system, and I will have a CT scan in mid-April to check that the lymph nodes are still in the normal range.
I suppose that means that I am now post-treatment, and it's a little bittersweet. I'm happy that I no longer have to go for regular needle pokes for the chemo, and for sure won't miss the extreme fatigue that was part & parcel of my treatment. But the end of treatment means that my body has to fight the cancer on its own now. According to my oncologist, I will know in three months if my body can now produce normal blood cells on its own. I will go for monthly checkups for blood work to see if my body is co-operating.
Given that my cancer is incurable, I can expect to undergo treatment again at some time in the future. When I become symptomatic again, as long as it is two years or more from now, I will be able to have the same chemotherapy regimen, that is Fludarabine with Rituxan (FR). This would be a bonus because I tolerated this treatment well, other than the fatigue. If I regress in less than two years, then I will have to move on to a more toxic regimen like CHOP-R, or CVP-R, which create stronger side effects like fatigue, hair loss, nausea etc.
My oncologist told me not to expect my energy level to return to normal for at least three months after treatment ends. I'll be counting starting now.
Roswell Park Cancer Institute lobby, where they have musicians live every day.
I suppose that means that I am now post-treatment, and it's a little bittersweet. I'm happy that I no longer have to go for regular needle pokes for the chemo, and for sure won't miss the extreme fatigue that was part & parcel of my treatment. But the end of treatment means that my body has to fight the cancer on its own now. According to my oncologist, I will know in three months if my body can now produce normal blood cells on its own. I will go for monthly checkups for blood work to see if my body is co-operating.
Given that my cancer is incurable, I can expect to undergo treatment again at some time in the future. When I become symptomatic again, as long as it is two years or more from now, I will be able to have the same chemotherapy regimen, that is Fludarabine with Rituxan (FR). This would be a bonus because I tolerated this treatment well, other than the fatigue. If I regress in less than two years, then I will have to move on to a more toxic regimen like CHOP-R, or CVP-R, which create stronger side effects like fatigue, hair loss, nausea etc.
My oncologist told me not to expect my energy level to return to normal for at least three months after treatment ends. I'll be counting starting now.
Roswell Park Cancer Institute lobby, where they have musicians live every day.
Tuesday, March 24, 2009
Cycle six, day 2: Fludarabine
Today was the second day this week I went for treatment. We get up at our usual time and leave as soon as we are ready, as the infusion centre does not make us wait on our appointment time, but schedules me as soon as I arrive. As a result, sometimes I am getting my chemo even before my appointment time! As Fludarabine is a short treatment, only about a half an hour, we were done before 11 am and did some errands on the way home.
I feel very well. I have no side effects as I did during the earlier infusions of Fludarabine when I had very sore arms and shoulders. I suppose my body is getting adjusted to the drug.
They tell me to drink lots of water to keep my body hydrated and shorten any possibility of kidney damage from the chemo, and I find that the hardest thing to manage. I've started keeping cases of water in my bedroom and drinking a bottle as often as I can, but I am not naturally a thirsty person and I find it hard to do. I've been trying flavoured waters to add interest and am currently drinking green tea with rasberry, a little sweet but a nice change from plain water.
Today I went for a walk to the mailbox, not a long distance but a pleasant walk on a warmish day. I am hoping to get out every day now that the weather forcast is for 50 degrees plus over the next week or so.
I feel very well. I have no side effects as I did during the earlier infusions of Fludarabine when I had very sore arms and shoulders. I suppose my body is getting adjusted to the drug.
They tell me to drink lots of water to keep my body hydrated and shorten any possibility of kidney damage from the chemo, and I find that the hardest thing to manage. I've started keeping cases of water in my bedroom and drinking a bottle as often as I can, but I am not naturally a thirsty person and I find it hard to do. I've been trying flavoured waters to add interest and am currently drinking green tea with rasberry, a little sweet but a nice change from plain water.
Today I went for a walk to the mailbox, not a long distance but a pleasant walk on a warmish day. I am hoping to get out every day now that the weather forcast is for 50 degrees plus over the next week or so.
Monday, March 23, 2009
Cycle six, day 1: Rituxan
I went for Rituxan today and all went well. I asked for a room with a bed and had to wait for another half hour for one to become free. I need a bed to lie down bacause I have to take Benadryl pills before the Rituxan infusion to control the allergic reactions like chills and shaking, and it always makes me dizzy. The Rituxan infusion lasts about three hours and that is a long time to sit up in a chair if I am not feeling well.
There are rooms around the sides of the infusion area that are more private than the cubicle I normally get and mostly have beds as well as reclining chairs. The room was very cold and so the nurse brought me three blankets, one after another, to help keep me warm.
Today was the beginning of my last cycle of treatment. I am looking forward to it all being over and done with, so I can get back to living my life.
There are rooms around the sides of the infusion area that are more private than the cubicle I normally get and mostly have beds as well as reclining chairs. The room was very cold and so the nurse brought me three blankets, one after another, to help keep me warm.
Today was the beginning of my last cycle of treatment. I am looking forward to it all being over and done with, so I can get back to living my life.
Monday, March 16, 2009
Dufferin Islands nature walk
We've had a beautiful weekend here in Fort Erie. It was sunny and warmer than normal.
Art & Wendy and Andrea and Erica came to visit and stayed overnight. They brought a wonderful dinner of ribs, salad and cranberry crumble for dessert. Art helped Barry move a new basement fridge inside, as the old one broke down.
On Sunday, Barry and I went out for a drive along the Niagara River. We decided to stop and walk around the Dufferin Islands area, with its waterfalls and ducks. There was still ice amongst the tree roots in the marshy areas even though it was so warm.
I was able to do a fifteen minute walk! It was astonishing to me to be able to walk so far, especially since I have had a cough virus for the last week. It was so nice to be able to do something normal, and with the sun shining and families out with their children for a stroll, it felt like spring.
Art & Wendy and Andrea and Erica came to visit and stayed overnight. They brought a wonderful dinner of ribs, salad and cranberry crumble for dessert. Art helped Barry move a new basement fridge inside, as the old one broke down.
On Sunday, Barry and I went out for a drive along the Niagara River. We decided to stop and walk around the Dufferin Islands area, with its waterfalls and ducks. There was still ice amongst the tree roots in the marshy areas even though it was so warm.
I was able to do a fifteen minute walk! It was astonishing to me to be able to walk so far, especially since I have had a cough virus for the last week. It was so nice to be able to do something normal, and with the sun shining and families out with their children for a stroll, it felt like spring.
Saturday, March 7, 2009
Visit from family
We had Cristen, Lucia and Emma come to visit for five days. They were on their way from the UK where they are living for four months, to Puerto Rico to attend a conference with Daddy. They built in a few days to visit with us while Daddy took care of some work obligations in Ann Arbor.
Lucia watching Diego videos in Grandma's chair, using all my pillows including the one I use to support my neck.
Lucia watching Diego videos in Grandma's chair, using all my pillows including the one I use to support my neck.
Friday, March 6, 2009
Coffee Break
Because of my chemo sessions, my life is very different nowadays. I am fatigued much of the time, and my 'up' time on any given day is limited to a few hours. Going out now means the occasional trip to the grocery store, or Wal-Mart or Home Depot, all of which have electric scooters available.
However, when we do go out, we sometimes stop for a cappucino treat. There is a great Williams Coffee Pub in Niagara Falls that has the best cappucinos, if we have to go to NF. There is also a new Coffee Culture in downtown Fort Erie that has excellent desserts, as well as comfy leather armchairs and great coffee. Otherwise there is Starbucks in most places. When we stop for coffee we feel as if it is a normal day, and we can pretend for a few moments that life is the same.
However, when we do go out, we sometimes stop for a cappucino treat. There is a great Williams Coffee Pub in Niagara Falls that has the best cappucinos, if we have to go to NF. There is also a new Coffee Culture in downtown Fort Erie that has excellent desserts, as well as comfy leather armchairs and great coffee. Otherwise there is Starbucks in most places. When we stop for coffee we feel as if it is a normal day, and we can pretend for a few moments that life is the same.
Thursday, March 5, 2009
Cycle five, day 9
On Tuesday I went to Roswell Park for my monthly shot of Neulasta, to help my white blood cells grow. It's becoming pretty routine. I didn't need a blood transfusion, and in fact, I haven't needed one since cycle one. That means that my hemoglobin is staying above 8.0 g/dl. In fact, it is generally above 10.0 g/dl, and while that is still below normal, it's a good sign.
We are also having a visit this week from Cristen, Lucia and Emma and that is keeping us pretty busy. They were all suffering from jet lag having just arrived from England. The kids were waking Cristen up at 3 am as they were still on UK time. Lucia is 3 years old now and seems much older. Emma is 6 months old and a very alert and calm baby. I'll post photos later.
We are also having a visit this week from Cristen, Lucia and Emma and that is keeping us pretty busy. They were all suffering from jet lag having just arrived from England. The kids were waking Cristen up at 3 am as they were still on UK time. Lucia is 3 years old now and seems much older. Emma is 6 months old and a very alert and calm baby. I'll post photos later.
Tuesday, February 24, 2009
Living with Lymphoma
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.
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.
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.
Wednesday, January 28, 2009
Good news from the CT Scan
Today was cycle four, day three: a Fludarabine day. While at Roswell we had a visit in the infusion room from Dr R. She gave us the results of last week's CT scan. The chest and abdominal lymph nodes that were enlarged on the previous CT scan have now gone back to normal. This only means that the lymph nodes are clear, not that the cancer is gone from my blood or bone marrow.
Dr R. also said that although it is possible to finish chemo after only four cycles of F-R, she feels it best that I go the full six cycles. We agreed with her assessment as we want the best possible results. This means my last chemo is at the end of March and I may be able to travel again by May. Something to look forward to.
To celebrate this good news I walked to the mailbox and back, for the first time in months. It is a winter wonderland outside as we are in the middle of a snowstorm. The walking was tough because of the deep snow but it felt good to be outside.
Dr R. also said that although it is possible to finish chemo after only four cycles of F-R, she feels it best that I go the full six cycles. We agreed with her assessment as we want the best possible results. This means my last chemo is at the end of March and I may be able to travel again by May. Something to look forward to.
To celebrate this good news I walked to the mailbox and back, for the first time in months. It is a winter wonderland outside as we are in the middle of a snowstorm. The walking was tough because of the deep snow but it felt good to be outside.
Monday, January 26, 2009
Cycle four, day one: Rituxan
Today I began another treatment cycle with Rituxan and Fludarabine. This one is number four of six, so therefore I am celebrating passing the halfway mark.
I always anticipate the Rituxan day with some anxiety, because I had such dreadful aftereffects when I had the first one. But today went fairly well at Roswell. Although we had a 2 hour wait until the drug appeared, there are magazines and individual TV's to help pass the time. A kind volunteer gave me a crossword puzzle book to keep me occupied.
I had the usual drowsiness because of the Benadryl pills. I had chills during the entire 3 hour infusion, even with a blanket on. A sore throat developed, and then restless legs. After I came home I had a bad stomach upset for a while. Nevertheless, it wasn't a bad start to the week as it's all easier from here on in.
I always anticipate the Rituxan day with some anxiety, because I had such dreadful aftereffects when I had the first one. But today went fairly well at Roswell. Although we had a 2 hour wait until the drug appeared, there are magazines and individual TV's to help pass the time. A kind volunteer gave me a crossword puzzle book to keep me occupied.
I had the usual drowsiness because of the Benadryl pills. I had chills during the entire 3 hour infusion, even with a blanket on. A sore throat developed, and then restless legs. After I came home I had a bad stomach upset for a while. Nevertheless, it wasn't a bad start to the week as it's all easier from here on in.
Saturday, January 24, 2009
CT Scan #2
On Wednesday I had my second CT scan. My doctor wants to see if my lymph nodes that were slightly enlarged at the first CT scan have gone back to normal size. I get the results next week.
It's an interesting experience. After I drank the Barium Sulphate suspension, that tastes like a berry smoothie, I waited 45 minutes to be called in. The nurse inserted an IV line and then I was called into the scan room. I lay down on a long table fully dressed, boots and all. I have to hold very still while I go through a doughnut shaped machine, for 5-7 minutes. About half way through the dye is inserted into the IV line and a warm flush follows over my whole body. There is a taste in my mouth. A disembodied voice intones loudly "don't swallow", then "take a deep breath and hold", then "breathe", then "arms over your head" as I go back & forth through the machine.
About half an hour after it was all over, all of my fingers started to itch and turn red. Fortunately it was a short lived reaction and was gone by the time I arrived home.
It's an interesting experience. After I drank the Barium Sulphate suspension, that tastes like a berry smoothie, I waited 45 minutes to be called in. The nurse inserted an IV line and then I was called into the scan room. I lay down on a long table fully dressed, boots and all. I have to hold very still while I go through a doughnut shaped machine, for 5-7 minutes. About half way through the dye is inserted into the IV line and a warm flush follows over my whole body. There is a taste in my mouth. A disembodied voice intones loudly "don't swallow", then "take a deep breath and hold", then "breathe", then "arms over your head" as I go back & forth through the machine.
About half an hour after it was all over, all of my fingers started to itch and turn red. Fortunately it was a short lived reaction and was gone by the time I arrived home.
Monday, January 19, 2009
The family wheelchair
I can't really shop. I run out of energy very quickly if I try to go in a store. Wal-Mart and Home Depot are great because they both have electric scooters for the disabled that I can drive around for a short half hour shopping trip. Other stores make it more difficult as they may have wheelchairs available but on an upper floor, or at customer service, nowhere near the doors.
So we borrowed the family wheelchair back from my brother-in-law. It was first used for my father-in law before he passed away in 2002, and then my mother-in-law used it until she passed away last summer.
And now its my turn. It folds up neatly and we keep it in the trunk of the car for use when needed. I used it after Christmas in Future Shop when we had returns to do and it worked great. I picked out a couple of movies while Barry was in the lineup. I used it on Sunday in Winners where I was looking at purses. I can propel it myself, or Barry can push me, but it saves my energy for other stuff. People are great; they yield to the wheelchair and they are always very polite.
So we borrowed the family wheelchair back from my brother-in-law. It was first used for my father-in law before he passed away in 2002, and then my mother-in-law used it until she passed away last summer.
And now its my turn. It folds up neatly and we keep it in the trunk of the car for use when needed. I used it after Christmas in Future Shop when we had returns to do and it worked great. I picked out a couple of movies while Barry was in the lineup. I used it on Sunday in Winners where I was looking at purses. I can propel it myself, or Barry can push me, but it saves my energy for other stuff. People are great; they yield to the wheelchair and they are always very polite.
Sunday, January 11, 2009
Cycle three, day twelve
On Friday I went back to Roswell Park for another appointment. I lined up at Phlebotomy for blood to be drawn and then found that they had no orders for me. I went over to the Hematology clinic and the nurse there had to draw up the orders and send me back to Phlebotomy. I'm starting to know the routine well enough that I was pretty sure they would have to draw blood to test to see if I needed a blood transfusion (I didn't).
I did have an injection of Neulasta to help my white blood cells grow, but I am not neutropenic (dangerously low neutrophil count) and that is good news as far as I am concerned. I have two more appointments in the next two weeks to check my blood counts and then I go for another CT Scan of my lymph nodes. Hopefully that will tell us for sure if the chemo is working.
I was feeling pretty good until the Neulasta injection. Since then I have had some pain in my chest area and have been more fatigued than has been typical. It fits with the side effects of the Neulasta.
I did have an injection of Neulasta to help my white blood cells grow, but I am not neutropenic (dangerously low neutrophil count) and that is good news as far as I am concerned. I have two more appointments in the next two weeks to check my blood counts and then I go for another CT Scan of my lymph nodes. Hopefully that will tell us for sure if the chemo is working.
I was feeling pretty good until the Neulasta injection. Since then I have had some pain in my chest area and have been more fatigued than has been typical. It fits with the side effects of the Neulasta.
Friday, January 2, 2009
An overview on fatigue
I look really well. I still have my hair, and my colour is good. I lost weight before my lymphoma was diagnosed and some people have said that I now look better than ever. That being said, when I tell people I am fatigued, they nod and look sympathetic but I don't think they really understand how tired I am.
Fatigue is the most common side effect of both my lymphoma and the chemo. I feel fortunate that I don't have any of the more serious side effects of chemo, such as nausea or hair loss, or an unhealthy weight loss.
When I wake up in the morning I am tired. Barry usually brings me coffee and breakfast in bed. I have a massaging bedrest from Brookstone that allows my arms to be supported while I am sitting up. After breakfast I shower, dress for the day (in sweats usually), and go back to bed, to rest from the exertion.
I keep my laptop by the bed and might spend an hour on it in the morning. I have a bed tray that angles so the keyboard is at the most comfortable angle for typing, while my arms are supported by the bedrest. I can check my email, do the banking, post to the blog, read other cancer survivor's stories, and talk to my family on MSN.
I find sitting up for long periods of time fatiguing so I often lie down and listen to books on audiotape, and sometimes fall asleep. I might listen to the same chapter three times because I keep falling asleep. Reading is difficult because I do not have the arm strength to hold a book for long, nor the concentration that reading sometimes requires.
If Barry is home and there are errands to be done I will sometimes go with him and just wait in the car while he goes into the stores. I have pillows to support my head and arms in the car. I don't have the stamina to walk around a store for more than a few minutes, but it's great to get out and see sunshine and experience fresh air, although living in Canada means it's too cold to spend much time outside.
But this week, although it is the week right after chemo, I am actually feeling quite well, relatively speaking, and am not as fatigued as last month. I am looking forward to all this being over and being able to live a normal life.
Fatigue is the most common side effect of both my lymphoma and the chemo. I feel fortunate that I don't have any of the more serious side effects of chemo, such as nausea or hair loss, or an unhealthy weight loss.
When I wake up in the morning I am tired. Barry usually brings me coffee and breakfast in bed. I have a massaging bedrest from Brookstone that allows my arms to be supported while I am sitting up. After breakfast I shower, dress for the day (in sweats usually), and go back to bed, to rest from the exertion.
I keep my laptop by the bed and might spend an hour on it in the morning. I have a bed tray that angles so the keyboard is at the most comfortable angle for typing, while my arms are supported by the bedrest. I can check my email, do the banking, post to the blog, read other cancer survivor's stories, and talk to my family on MSN.
I find sitting up for long periods of time fatiguing so I often lie down and listen to books on audiotape, and sometimes fall asleep. I might listen to the same chapter three times because I keep falling asleep. Reading is difficult because I do not have the arm strength to hold a book for long, nor the concentration that reading sometimes requires.
If Barry is home and there are errands to be done I will sometimes go with him and just wait in the car while he goes into the stores. I have pillows to support my head and arms in the car. I don't have the stamina to walk around a store for more than a few minutes, but it's great to get out and see sunshine and experience fresh air, although living in Canada means it's too cold to spend much time outside.
But this week, although it is the week right after chemo, I am actually feeling quite well, relatively speaking, and am not as fatigued as last month. I am looking forward to all this being over and being able to live a normal life.
Chemo week, cycle three
On Monday I had my Rituxan infusion, and it went well. It's a long infusion, 3 hours, but the only side effects I had were from the Benadryl; sleepiness and dizziness.
Wednesday was New Year's Eve. We didn't spend it partying. I spent the morning at Roswell Park having Fludara dripped into my veins. Everything went well and I had no side effects other than being cold during the infusion. We went home and I had a long nap.
I went to bed at 10 pm on New Year's Eve and Barry stayed up to watch the New Year come in at Times Square.
Friday morning was more Fludara and still no side effects. I'm hoping that it means that I will have a good month with less arm pain in particular.
Happy New Year to everyone and I thank you all for your thoughts and prayers.
Wednesday was New Year's Eve. We didn't spend it partying. I spent the morning at Roswell Park having Fludara dripped into my veins. Everything went well and I had no side effects other than being cold during the infusion. We went home and I had a long nap.
I went to bed at 10 pm on New Year's Eve and Barry stayed up to watch the New Year come in at Times Square.
Friday morning was more Fludara and still no side effects. I'm hoping that it means that I will have a good month with less arm pain in particular.
Happy New Year to everyone and I thank you all for your thoughts and prayers.
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