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.