November 22nd, 2011

I often go through a blog write-up in my mind, a few times a week actually. So, I am always surprised when I look at my blog and realize it has been a few months since my last post. I have lots of thoughts to share but actually writing it down seems to be at the bottom of my priority list.

Today is my birthday. That means I have been one year free of cancer. It isn't great that my birthday week is also the same anniversary of my cancer diagnosis (2 years ago) and my first cancer free scan (one year ago) but it is what it is. I am so thankful to have another year with my family. My family is everything to me and getting to watch my children grow another year is the best of the best. Birthdays are a good thing indeed.

In my last blog I wrote about my finger lesions and worrying about the lasting effects of the Rituxan on my body. In October I got another bout of finger lesions and finally went to see a general M.D. here at our local clinic. He (the doctor) took one look at my fingers and said that the outbreak looked exactly like a stress/anxiety skin condition. As soon as he said that I could feel the cogs in my brain turning. Maybe he was right. My first outbreak was around the time my Dad took a turn for the worse with his cancer fight, around May. I then broke out again in August when I was getting ready for the triathlon. My third breakout was in early October. A few weeks before a fundraising dinner/auction for 150 people that I was in charge of organizing. I had small outbreaks in between those big outbreaks but those events were around major breakouts. I didn't feel more stressed than usual but I do have a bad habit of internalizing everything. So, the doctor gave me a couple of prescriptions to treat the lesions and those prescriptions seem to be working. I am hoping that means my outbreaks were due to stress and not a direct effect of the Rituxan. If that is the case I can hopefully use Rituxan again when needed in the future.

Back to healthy things, I am still swimming and walking. I asked Kevin to get my bike off the garage loft so I can set it up in the work out room. I have a bike stand so I can bike all winter. I have taken a few months off from biking and I need to get back into the routine of riding. I really loved training and participating in the triathlon this past summer and I would like to do one sprint triathlon a year. If you would like to join me in a triathlon let me know, the more the merrier.

I head south again in February for my 6 month check-up. I am thinking of combining that trip with Parents Weekend at Dylan's college. It would be something not so fun with something enjoyable. I like hanging out with my kids.

I hope everyone has a wonderful Thanksgiving. There is much in our lives to be thankful.

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