Wow, it is hard for me to believe that it has been over a month since my last post. I had good intentions to write what happened at my last doctor's appointment soon after my appointment. In this case it can certainly be said that 'no news is good news'.
My chest xray and abdominal ultrasound came back clean. That is great news. I was expecting good news because I was feeling fine but I was feeling fine when I was diagnosed so 'feeling fine' isn't a good indicator. Dr. Kaplan seemed pleased with everything and since he is the expert I am satisfied with his take on things. My blood work is also looking good.
I did get to see some internal squabbling at work at Swedish Hospital. Everyone has a different take on his/her own specialty. When I went to Seattle Ultasound for my first appointment the technician who did the scan seemed confused about why exactly I was there. She said that since I was just coming off of my treatments that the ultrasound machine probably would not pick up anything significant since it would not pick up one or two swollen lymph nodes but only a large mass of them (the chemo treatments would have killed any large masses). She gave me a full abdominal scan while wondering out loud why I was having an ultrasound and not a CT scan. When the radiologist came in to read the results she told me the same thing. The radiologist said, " I have talked to Dr. Kaplan about this before. I will mention something again in the summary notes that I send to him." I liked both the technician and the radiologist. Both women were very polite and professional but I was feeling confused about why I was there by the end of the appointment. A few days later when I saw Dr. Kaplan I said to him that the technician and the radiologist were confused about why I was there. That set him off on a three minute speech about why he sent me there. I had to laugh (to myself) when he said, 'I have talked to them before about this!" Two different perspectives on the same test. It was interesting to hear both sides. I am supposed to have an ultrasound every 16 weeks but I am thinking every six months may be more appropriate. I will talk to Kaplan about this when I next see him.
So, I am feeling good.
thanks for reading,
Wednesday, December 22, 2010
Saturday, November 13, 2010
November 13, 2010
I have been thinking of this blog for several weeks now, trying to figure out exactly what to write. I know the subject matter just not the exact words to describe my thoughts and feelings. I will try to put all down so it makes sense to someone without cancer.
I leave this coming week for my third round of Rituxan. I also need to have a chest x-ray and abdominal ultrasound done. I haven't had any scans since April and those results showed that my cancer was greatly reduced. I then had two more chemo sessions after that scan and the hope was that those two treatments would be enough to rid my body of the cancer. I will find out if that is true on November 23rd when I visit my oncologist. This date, November 23rd, is significant because it is the one year anniversary of my cancer diagnosis.
It has been a long year.
I didn't want my appointment on my anniversary date but that was how it worked out. I didn't want my appointment at all this particular week but between holidays, work and sports schedules that is how it worked out. It just seems really ironic to me. Exactly one year after my diagnosis I will find out if five months of chemotherapy and seven rounds of Rituxan were successful. It is also the week of my birthday and Thanksgiving.
I don't know about my future birthdays but the first birthday after a cancer diagnosis and treatment is significant. A friend of mine who went through cancer treatments the same time as me had her birthday in early fall. I asked her if she took time during the day to close her eyes, breath slowly, and center herself in all that occurred since her last birthday. She said yes, she had done that, and the day was very emotional for her. I am thinking my birthday will be very emotional for me also. My birthday is after my scan and the day before I see my oncologist. I won't know the results of my scans on my birthday. I will know the results before Thanksgiving. I am hoping Thanksgiving will not be a day of sadness. In my head I keep going back to my first appointment with my oncologist. After he told me my scan results I felt like I had gone to Seattle for a death sentence. I know now that is not true. Lymphoma, nowadays, is often considered a chronic illness because of the advancements in medicine. A person can live many years with Lymphoma. I don't want to live many years with Lymphoma I want to live many years without Lymphoma. My scans will tell me what I will be living with.
What I remember most of my trip to Seattle last year is the darkness of the drive to the hospital for my appointment and the darkness of the drive to my sister's house after my appointment. My appointment was at 5pm so night was already falling. We were at the hospital for a good 2.5 hours so when we left it was even darker. I wonder if I had received good news if the darkness would not have stuck so much in my mind. My appointment this time is at 9am. I hope it isn't a dark day and I can remember more light. Cancer does not just play with your body it also plays with your mind.
I could use your prayers.
thanks for reading
brynn
I leave this coming week for my third round of Rituxan. I also need to have a chest x-ray and abdominal ultrasound done. I haven't had any scans since April and those results showed that my cancer was greatly reduced. I then had two more chemo sessions after that scan and the hope was that those two treatments would be enough to rid my body of the cancer. I will find out if that is true on November 23rd when I visit my oncologist. This date, November 23rd, is significant because it is the one year anniversary of my cancer diagnosis.
It has been a long year.
I didn't want my appointment on my anniversary date but that was how it worked out. I didn't want my appointment at all this particular week but between holidays, work and sports schedules that is how it worked out. It just seems really ironic to me. Exactly one year after my diagnosis I will find out if five months of chemotherapy and seven rounds of Rituxan were successful. It is also the week of my birthday and Thanksgiving.
I don't know about my future birthdays but the first birthday after a cancer diagnosis and treatment is significant. A friend of mine who went through cancer treatments the same time as me had her birthday in early fall. I asked her if she took time during the day to close her eyes, breath slowly, and center herself in all that occurred since her last birthday. She said yes, she had done that, and the day was very emotional for her. I am thinking my birthday will be very emotional for me also. My birthday is after my scan and the day before I see my oncologist. I won't know the results of my scans on my birthday. I will know the results before Thanksgiving. I am hoping Thanksgiving will not be a day of sadness. In my head I keep going back to my first appointment with my oncologist. After he told me my scan results I felt like I had gone to Seattle for a death sentence. I know now that is not true. Lymphoma, nowadays, is often considered a chronic illness because of the advancements in medicine. A person can live many years with Lymphoma. I don't want to live many years with Lymphoma I want to live many years without Lymphoma. My scans will tell me what I will be living with.
What I remember most of my trip to Seattle last year is the darkness of the drive to the hospital for my appointment and the darkness of the drive to my sister's house after my appointment. My appointment was at 5pm so night was already falling. We were at the hospital for a good 2.5 hours so when we left it was even darker. I wonder if I had received good news if the darkness would not have stuck so much in my mind. My appointment this time is at 9am. I hope it isn't a dark day and I can remember more light. Cancer does not just play with your body it also plays with your mind.
I could use your prayers.
thanks for reading
brynn
Friday, October 1, 2010
October 01, 2010
My sister told me I hadn't written on my blog for a while. I checked the date of my last entry and she is correct. I believe that is a good sign. I don't think about cancer every moment of the day anymore. I don't feel sick and depressed on a daily basis so I don't feel the need to write out my thoughts in order to make some sense out of a disease that makes no sense. I have moved on with positive thoughts that my cancer will not return for a long time. I am focusing on my faith, family, friends, work and volunteer hours. My life, for the most part, has returned to my precancer days.
When I say 'for the most part' it means I continue with my every 8 weeks treatment. I just finished treatment #2. I went through the Ketchikan hospital for my treatment this time. It was a first to try out the Peacehealth (Ketchikan hospital) oncology department. Everything went fine. The oncology nurse, Deb, was very nice and did a great job with my IV. I came home with no bruising. That does not happen very often, thanks Deb. The oncology room is an ICU room. It has enough space for three chairs. It is a tight fit. My chair was next to the bathroom and if anyone wanted to use that room she/he has to move my guest chair out of the way.
When I got to the hospital there were two people getting treatment and when they left another person showed up. That would make 4 of us for the day. The usual treatment day is Wednesday but Deb has to schedule any overflow for Tuesday or Thursday. That means the four of us were overflow since we were there on a Tuesday. Deb mentioned that she had another person scheduled for Thursday. I don't know how many people were scheduled for Wednesday but it is obviously and sadly a very busy place.
When I head to Seattle for treatment #3 I will need to do a chest x-ray and abdominal ultrasound, checking for cancer. I am guessing I will be anxious about that because I was feeling anxious about my treatment this past week and I didn't have to do any xrays/ultrasounds. Feelings that I will always have to deal with and work around.
Thanks for reading
When I say 'for the most part' it means I continue with my every 8 weeks treatment. I just finished treatment #2. I went through the Ketchikan hospital for my treatment this time. It was a first to try out the Peacehealth (Ketchikan hospital) oncology department. Everything went fine. The oncology nurse, Deb, was very nice and did a great job with my IV. I came home with no bruising. That does not happen very often, thanks Deb. The oncology room is an ICU room. It has enough space for three chairs. It is a tight fit. My chair was next to the bathroom and if anyone wanted to use that room she/he has to move my guest chair out of the way.
When I got to the hospital there were two people getting treatment and when they left another person showed up. That would make 4 of us for the day. The usual treatment day is Wednesday but Deb has to schedule any overflow for Tuesday or Thursday. That means the four of us were overflow since we were there on a Tuesday. Deb mentioned that she had another person scheduled for Thursday. I don't know how many people were scheduled for Wednesday but it is obviously and sadly a very busy place.
When I head to Seattle for treatment #3 I will need to do a chest x-ray and abdominal ultrasound, checking for cancer. I am guessing I will be anxious about that because I was feeling anxious about my treatment this past week and I didn't have to do any xrays/ultrasounds. Feelings that I will always have to deal with and work around.
Thanks for reading
Sunday, August 29, 2010
Sunday, August 29th
I was at a social gathering a few weeks ago when a woman (who shall remain nameless) came up to me and asked how I was doing. I replied I was feeling fine and everything was going well. She then said to me 'you are looking better now than before you knew you had cancer.' I just thought, 'what the hell are you talking about?' This is the second time this woman has said something stupid to me. This past spring she came up to me to ask about my cancer because she has just heard about the diagnosis. She asked me exactly what my kind of cancer was called. I told her Follicular Lymphoma and we discussed treatments for a short bit. She then repeated the name of my cancer and said to me, 'well, at least you got an interesting sounding one.' The first time I just looked at her and said 'hmm' and the second time I think she noticed the look on my face because she started to explain her statement. I just gave her a half a smile and didn't say anything. She smartly walked away.
Sometime this past spring this exact topic was discussed on my Lymphoma website discussion board. Every one was chiming in with different statements that were said to them that should never have been said. I understand that it can be difficult to think of something appropriate to say when you are in an unusual or uncomfortable situation. Here are some things I have found helpful and not helpful.
Helpful:
Thanks for reading
Sometime this past spring this exact topic was discussed on my Lymphoma website discussion board. Every one was chiming in with different statements that were said to them that should never have been said. I understand that it can be difficult to think of something appropriate to say when you are in an unusual or uncomfortable situation. Here are some things I have found helpful and not helpful.
Helpful:
- I am sorry to hear of your cancer
- What do you need?
- How can I help?
- I will call at different times and see if you need anything
- How is your family dealing with all this?
- Do you need mileage, cash, someone to travel with you, a ride, your house cleaned (naming specific things)?
- This totally sucks
- I will pray for you and your family
- I will call people for you
- You are looking good
- How are you feeling?
- Weekly mail from friends just checking in
- Well, at least you got an interesting sounding one
- Tell me about the cancer and the possible outcomes (especially during the first month, it was too new and too upsetting to discuss with everyone)
- Well, maybe it will help you lose weight (why do people think it is ever okay to comment on peoples' weight?)
- Call me with updates I don't like email
- You could die from cancer
- Call me if you need anything (too general, chances are I am not going to call)
Thanks for reading
Saturday, August 14, 2010
Saturday, August 14th, 2010
I have been recently asked (several times) if my cancer is gone now and I have truthfully answered 'I don't know'. When I had my last scan in April the cancer was greatly reduced and at that point Dr. Kaplan told me I only needed two more treatments. I didn't have another scan at the end of treatment so I don't know if all the cancer is gone. At this point I consider myself to be cancer free and I pray for a long remission. The Rituxan maintenance program I have started is supposed to keep the cancer from growing or spreading. It has a 50% success rate which, as Dr. Kaplan told me, is considered a good percentage in the world of cancer care.
I had my first Rituxan treatment last week in Seattle. I sat there letting the I.V. drip for almost four hours. I could tell I was losing patience with sitting for that long while being hooked to a large machine (the IV and its pole). I even have to roll the pole with me to the bathroom. This last time I had two nurses hook up my I.V. and medication. The first nurse put the I.V. into my arm and started the bag of saline solution. The second nurse came in and hooked up and started my bag of Rituxan. I laid there for a while and decided to go to the bathroom. When I got up from the chair I noticed a puddle of water on the table that is attached to the chair. I wondered what I had spilled and couldn't remember setting anything wet there. When I got to the bathroom I noticed water drops on the base of my I.V. pole. I then noticed that a tube from one of the bags was not attached to my arm and was dripping. I walked back to my chair looking for a nurse, while holding the dripping tube, and had to ring my call button when I didn't see anyone around. The charge nurse, Linda came in to see what I needed. I told her about the loose I.V. drip. She looked at it and said, 'Oh, the nurse forgot to attached your Rituxan to your arm.' My $20,000 bag of medicine was dripping all over the place! Linda went and got my nurse and everyone worked at hooking the bag up and cleaning the Rituxan off the floor, my hand, and the table. I was worried because I know chemo can not touch skin. Chemo is highly toxic and can burn the skin. If you get chemo on your skin surgery is sometime required to repair the damage. I think Linda noticed the look on my face and she said not to worry Rituxan is not like chemo and it won't damage the skin. The nurses also checked how much medicine had run through the I.V. and it was 25cc which Linda said was okay because the first 15 cc of that was the saline solution. The nurse who forgot to attach the tube to my arm felt really bad. She apologize a few times. I was fine with it all as long as I was getting enough of the Rituxan to make a positive difference in my body. The next day I was walking into the living room of my sister's house when I realized I got through a treatment without throwing up. I said to my sister, 'Wow, it feels good to get a treatment and not feeling sick for days afterward.' Some people get side effects from Rituxan but most people do well with it.
I feel good and am feeling happy.
thanks for reading
I had my first Rituxan treatment last week in Seattle. I sat there letting the I.V. drip for almost four hours. I could tell I was losing patience with sitting for that long while being hooked to a large machine (the IV and its pole). I even have to roll the pole with me to the bathroom. This last time I had two nurses hook up my I.V. and medication. The first nurse put the I.V. into my arm and started the bag of saline solution. The second nurse came in and hooked up and started my bag of Rituxan. I laid there for a while and decided to go to the bathroom. When I got up from the chair I noticed a puddle of water on the table that is attached to the chair. I wondered what I had spilled and couldn't remember setting anything wet there. When I got to the bathroom I noticed water drops on the base of my I.V. pole. I then noticed that a tube from one of the bags was not attached to my arm and was dripping. I walked back to my chair looking for a nurse, while holding the dripping tube, and had to ring my call button when I didn't see anyone around. The charge nurse, Linda came in to see what I needed. I told her about the loose I.V. drip. She looked at it and said, 'Oh, the nurse forgot to attached your Rituxan to your arm.' My $20,000 bag of medicine was dripping all over the place! Linda went and got my nurse and everyone worked at hooking the bag up and cleaning the Rituxan off the floor, my hand, and the table. I was worried because I know chemo can not touch skin. Chemo is highly toxic and can burn the skin. If you get chemo on your skin surgery is sometime required to repair the damage. I think Linda noticed the look on my face and she said not to worry Rituxan is not like chemo and it won't damage the skin. The nurses also checked how much medicine had run through the I.V. and it was 25cc which Linda said was okay because the first 15 cc of that was the saline solution. The nurse who forgot to attach the tube to my arm felt really bad. She apologize a few times. I was fine with it all as long as I was getting enough of the Rituxan to make a positive difference in my body. The next day I was walking into the living room of my sister's house when I realized I got through a treatment without throwing up. I said to my sister, 'Wow, it feels good to get a treatment and not feeling sick for days afterward.' Some people get side effects from Rituxan but most people do well with it.
I feel good and am feeling happy.
thanks for reading
Thursday, July 29, 2010
July 29, 2010
I have often talked through out this blog about how much waiting I have to do when I go to Seattle for treatments. I have to wait up to an hour to see the oncologist and then I go upstairs and wait for almost as long to get a chair in the chemo ward. I see lots of people with cancer and I don't think I have ever seen the same person twice. There are so many people with cancer in this world. I look around the doctor's waiting room and then I look around the chemo waiting room and I see many many people willing to put poison into their bodies in order to live as long as possible. These are people who see value in life. I have talked with a few people about this and I have spent a very long time thinking about it. Ketchikan and Prince of Wales have had a rash of suicides in the last two years. It doesn't matter if the person is young or old everyone feels the sadness over the death. I have thought a lot about this. And frankly, after going through cancer treatments and seeing so many other people going through cancer treatments, I am just feeling really ticked off at people who destroy a healthy body. I know the mind isn't healthy but I am still mad about it. I mentioned to my sister-in-law Rhonda that I know there is a story in all of this somewhere. I just don't know what it would be. When I say 'story' I am referring to a book. It could be based on science fiction or a philosophical book or a non-fiction drama or even a fictional drama. I keep thinking there is a story there.
I think I have been dwelling on this because in two days I leave for Seattle to start my Rituxan maintenance treatments. It is two years of treatments if my body can handle that much antibody. I will see many people working hard to stay alive and I can love and appreciate their hard work and dedication to their family, friends, and self. A co-worker asked me this week if I spent a lot of time depressed because of the cancer. I told her sometimes but most of the time I just feel really thankful for every day I have with my family and that I am feeling good.
I am also going to see a cardiologist when I am in Seattle. I need to do some stress tests on the treadmill. The tests take around 4 hours. I sure hope I am not running most of that time. I am not worried about it at all. It is just for precautionary measures. The one bad thing about the heart appointment is that I can't have any amount of caffeine 24 hours before the appointment. That means no decaff coffee, tea or chocolate, huge bummer.
My family went to the Karta River last week and camped for two days. It was fun and relaxing. We cooked picnic food
in the fire and drank hot chocolate and cider the entire time. I took naps during the day and read Janet Evanovich books, my kind of vacation. Here are a few pictures of the family on the trip. We stayed in a Forest Service cabin and Kevin/Bryan spent a lot of time fishing. Noah and his friend, Alex spend most of their time in front of the fire melting poles made of iron. It was a good time all around.
Thanks for reading.
I think I have been dwelling on this because in two days I leave for Seattle to start my Rituxan maintenance treatments. It is two years of treatments if my body can handle that much antibody. I will see many people working hard to stay alive and I can love and appreciate their hard work and dedication to their family, friends, and self. A co-worker asked me this week if I spent a lot of time depressed because of the cancer. I told her sometimes but most of the time I just feel really thankful for every day I have with my family and that I am feeling good.
I am also going to see a cardiologist when I am in Seattle. I need to do some stress tests on the treadmill. The tests take around 4 hours. I sure hope I am not running most of that time. I am not worried about it at all. It is just for precautionary measures. The one bad thing about the heart appointment is that I can't have any amount of caffeine 24 hours before the appointment. That means no decaff coffee, tea or chocolate, huge bummer.
My family went to the Karta River last week and camped for two days. It was fun and relaxing. We cooked picnic food
in the fire and drank hot chocolate and cider the entire time. I took naps during the day and read Janet Evanovich books, my kind of vacation. Here are a few pictures of the family on the trip. We stayed in a Forest Service cabin and Kevin/Bryan spent a lot of time fishing. Noah and his friend, Alex spend most of their time in front of the fire melting poles made of iron. It was a good time all around.Thanks for reading.
Saturday, July 10, 2010
July 10, 2010
Rituxan, that is what I will be doing every other month for the next two years. Rituxan is a man-made antibody that keeps cancer from spreading. I have been doing Rituxan along with the chemo the last several months. The long term side effects run the spectrum. Some people are very ill with it and others have few or no side effects. This drug does lower the blood platelets so I have to be careful to keep germs away since my body won't be as strong to fight infection. Dr. Kaplan told me though that this risk is minimal.
It has taken me awhile to process this new information. I was feeling depressed last weekend but after spending last Saturday dealing with my feelings I am better. I cried a good part of the day. Then I knew it was time to move on and make the best of the situation. Two years seems like a long time to me. I think that is what I find the most overwhelming. Every other month I need to travel to Ketchikan or Seattle for treatment. That is a lot for a person who loves to stay home. I am going to try Ketchikan for treatment and see how it goes. I am a bit nervous about putting another doctor on my team. I have read the research and the more medical providers involved with a person is not a really good thing. Medical providers do not communicate well with each other. I don't want to give up Dr. Kaplan since he is a Lymphoma specialist and knows what he is doing but I don't want to fly to Seattle 6 times a year. I am going to alternate my treatments between Ketchikan and Seattle and if I decide I don't like it then I will drop Ketchikan and just bite the bullet about flying to Seattle all the time.
Rituxan is a one day treatment. The IV drip itself will take approximately 4 hours. The rest of the day will be spent waiting for my doctor's appointment and then waiting to get called in to do the drip. I don't know how this will go in Ketchikan but in Seattle there is a lot of waiting.
I am thinking of buying a very simple laptop that will allow me to watch DVDs' and get on-line.
Both of those things should help pass the time.
I am thinking of starting some kind of support group for people with cancer. I have really enjoyed talking to people on Prince of Wales who have or had cancer. We all know exactly what we are talking about and if one talks about possible death no one says 'oh, you will be fine.' Those of us who live with cancer know that 'fine' is not always the end result. It is easier to be open about our side effects, treatments, fears, and even happy moments. I will pray about this.
Here is another picture from the party weekend. I look at these pictures often because the weekend was so much fun. In this picture we were pretending to show off our 'cleavage' since the infamous black dress has a low neckline.
Thanks for reading.
It has taken me awhile to process this new information. I was feeling depressed last weekend but after spending last Saturday dealing with my feelings I am better. I cried a good part of the day. Then I knew it was time to move on and make the best of the situation. Two years seems like a long time to me. I think that is what I find the most overwhelming. Every other month I need to travel to Ketchikan or Seattle for treatment. That is a lot for a person who loves to stay home. I am going to try Ketchikan for treatment and see how it goes. I am a bit nervous about putting another doctor on my team. I have read the research and the more medical providers involved with a person is not a really good thing. Medical providers do not communicate well with each other. I don't want to give up Dr. Kaplan since he is a Lymphoma specialist and knows what he is doing but I don't want to fly to Seattle 6 times a year. I am going to alternate my treatments between Ketchikan and Seattle and if I decide I don't like it then I will drop Ketchikan and just bite the bullet about flying to Seattle all the time.
Rituxan is a one day treatment. The IV drip itself will take approximately 4 hours. The rest of the day will be spent waiting for my doctor's appointment and then waiting to get called in to do the drip. I don't know how this will go in Ketchikan but in Seattle there is a lot of waiting.
I am thinking of buying a very simple laptop that will allow me to watch DVDs' and get on-line.
Both of those things should help pass the time.
I am thinking of starting some kind of support group for people with cancer. I have really enjoyed talking to people on Prince of Wales who have or had cancer. We all know exactly what we are talking about and if one talks about possible death no one says 'oh, you will be fine.' Those of us who live with cancer know that 'fine' is not always the end result. It is easier to be open about our side effects, treatments, fears, and even happy moments. I will pray about this.
Here is another picture from the party weekend. I look at these pictures often because the weekend was so much fun. In this picture we were pretending to show off our 'cleavage' since the infamous black dress has a low neckline.
Thanks for reading.
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