August 22nd, 2011

It has been a long time since my last posting. I have thought about updating my post at different times in the last months but in the end I just needed a break from the cancer. I do think about my cancer every day but I don't want to always discuss it.

Here is some exciting news...I am a triathlete! I finally got to participate in the Seattle Danskin Triathlon. This has been more than a 2 year goal. I first started training in early fall of 2009 with my goal to complete the 2010 triathlon. My cancer diagnosis and treatments got in the way so I set 2011 as the year to tri-tri-tri. I was certainly nervous about the first two events. I was worried the water would be too cold for me and I worried about falling off my bike. There was no need to worry, it was a blast.

When I got my first glimpse of the spot where we would be swimming in Lake Washington I thought, 'this is going to be fun', I think that is what saved me from any problems. I heard that other women felt a bit panicked in the water but I just focused on swimming from buoy to buoy to shore and felt safe the entire time. I just kept thinking how much fun I was having. At one point I did tear up because I thought, 'mom and dad, look at me, I am doing a triathlon!'. Even at 47 what my parents think is important to me. I finished the race in 2 hours and 1 minute. Next year my goal is to complete the race in less than 1 hour and 50 minutes. I am thinking of different ways I can take ten minutes off my time. One is to simply swim and bike faster and the other is to practice walking more on pavement. I usually walk on dirt roads and pavement is hard on my shins. A big shout out here goes to my friend Sheila who completed the triathlon with me. I would not have done the race without a partner and she wonderfully stepped into that position. Also, my sister Julie was the hostess with the mostess and deserves a thank you for her support. And, my good friend Tina drove over from Ellensburg to congratulate me, thanks Tina.

The day after the race I had scheduled an appointment with Dr. Kaplan. I had the usual nervousness about the appointment. I am happy to say it went well. The appointment included my yearly scans which did not show any 'hot spots' which means cancer. It is, of course, always a relief to hear that kind of news. I made the appointment with the main goal of discussing my 8 month cough/lung issues. Dr. Kaplan thought I was there for a regular check-up. I really need to work on my communications with that man. I thought I had made it clear in my emails that I was worried about my cough and he thought I was there for a regular check up. Anyway, the scans did not show any abnormality with my lungs.

Let's back up a bit. In March of this year I saw Dr. Kaplan and we discussed dizzy spells that I had been having. I mentioned these spells to Dr. Kaplan in November and he didn't say much about them. When I mentioned them again during my March appointment he looked more interested and we talked about them further. I said the dizziness was from the Rituxan (the cancer drug I have been taking every other month) and he said he had never heard of that. I said again that the dizziness was from the Rituxan and so he looked it up on his computer. Sure enough, 10 % of people taking Rituxan complain of dizzy spells. I had done the research on my own and I knew the dizzy spells were from the Rituxan.

During this past visit I told him I thought my cough was due to the Rituxan. Dr. Kaplan said he would be surprised if that was true. I said again I felt that the cough was due to the Rixuan. He said no. After discussing it a bit he said 'look, you are asking my professional opinion and I am telling you what I think. The cough is a separate issue and I would like you to see a lung specialist. I don't think though the cough is cancer.' Well, I don't think the cough is cancer either. I had a cancer free scan and I have done my research. I was really frustrated at that point and dropped the cough issue. Then I asked Dr. Kaplan about the blister like marks I had been getting between my fingers. During the last several months I have been getting these itchy red marks between my fingers and a few times on different places on my face. He immediately said those were most definitely from the Rituxan and that I should take a break from the cancer drug to see how things progressed in next few months. Out of all the side effects I had been experiencing he seemed most concerned about the marks between my fingers. I was also thinking I might be done with the Rituxan. I was having too many side effects. So, at this point I am done with Rituxan. I did not complete the 2 year prescription but I really think the drug was starting to do more harm than good. I have read a lot on Rixuan and many people are now taking it as the first step in treatment. Follicular Lymphoma is a slow growing cancer and Rituxan can slow it down even more postponing any need for chemotherapy. I did seven maintenance appointments with Rituxan and hopefully that is enough to keep the cancer away for many years.

Last week I finally made an appointment with a new oncologist to get a second opinion about my cancer and treatments. I have been wanting to do this for a while but never made time for it. I thought this was a good time to do that. I am looking for general thoughts on Follicular Lymphoma and next steps in keeping the cancer away. I also want a second opinion about the lung specialist. If the second oncologist says to go see a specialist than I will but I really think my cough will go away with the ending of the Rituxan treatments. The internet is full of correlations between Rituxan and lung problems. In fact, 13% of people on Rixuan complain of a persistent cough/upper respiratory infections.

So, that is where I stand today. Off to Seattle for one appointment. I will probably fly down one day and return the next. I will keep in touch about my next steps.

Thanks for reading.

January 24th, 2011

I switched out purses this weekend. I put away the canvas bag I purchased on one of my chemo trips to Seattle and am now using one of my other bags. I obviously used this older bag last January because I found a letter from Janaury 2010 in it. Last January was when I started my chemotherapy. The letter was from one of my dear friends wishing me well on my cancer treatment journey. She said, 'I cannot imagine how one goes about preparing to begin chemotherapy.' At the time I received that letter I would have had to agree with her. I didn't know how a person went about preparing for chemo treatments either. It was a whole new world and every step was a new one. I have been thinking about my treatments quite a bit this month since it has been exactly one year since I started chemo. Life is full of reflections. My one bit of advice to everyone is to get a second opinion. I did not get one and I even though I probably would have done exactly what I did getting another perspective is important.

I also have been forgetting to mention some good news on the drug Rituxan that I have been getting. Last year when I started the Rituxan the research showed it to be 50 percent effective in keeping cancer away five years after treatment finished. After another year of research the results now show that Rituxan is 60 percent effective in keeping cancer away five years after finishing treatment. I am hoping that the next few years will keep the percentage growing in its success. Rituxan is a relatively new drug and the research is relatively new. So, as people with Lymphoma live cancer free longer the positive research results should also increase. I am grateful for that extra 10 percent.

My Rituxan treatments have been going well. I have now completed two treatments in Ketchikan and everything has gone well. I really like Deb Davis who is the oncology nurse for the hospital. She is very kind and professional. She put in my IV on both treatments and I did not bruise once. That could not be said for my treatments in Seattle.

Keep well everyone and thanks for reading

December 31, 2010

I laid in bed this morning thinking about 2010. I got through the year, my family got through the year; no thanks to the $#@% cancer. I guess it is true what doesn't kill you will make you stronger. Our family had a tough year but we survived. The little boys seemed fine with everything once I told them I would be okay. That was their only concern. Dylan never wanted to talk about it and he wouldn't ask me any questions about it. He was old enough to better understand the uncertainty of cancer. He didn't ask questions because he was afraid of the answers. We have all breathed a sigh of relief at reaching the end of the year.

I remember telling people. last December, that the chemo would only be 12 days out of my life, no problem. This was naive on my part which was a good thing. It was 2 days of chemo treatments a month but also 2 days of travel, and a week of being sick. I spent a lot more than 12 days throwing up.

A short time ago I was relating one particular nauseating experience to a few people and I was laughing when I was telling the story (it took place on a plane). They both looked horrified. I am glad I can laugh. The experience certainly was not funny at the time but with the passing of months and in better health I can appreciate the experience. I got through it. I got through it. I got through it. That, and my family and friends, is what made 2010 a good year.

Happy New Year

December 22, 2010

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,

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

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

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:

• 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
  

Not Helpful:

• 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)

The majority of comments have been helpful and appreciated and I thank you for that. It has been only a few people who have made not so great comments. I have learned a lot about what should be and should not be said and it will also help me with others in a similar situation.

Thanks for reading