Posts Tagged ‘Neuro-oncologist’

MP_keepcalm

BT_keep_calm and wear gray

DO BOTH

On January 6, 2014 my neuro-oncologist and I decided to stop treatment for my brain cancer. Now I am officially in remission and have finished the marathon that is started last summer. I have been so busy in the last few months that I have not written a blog post.

I also have had a few viruses along the way too, that have zapped my energy.  The post radiation headaches continue and now I am on preventative medication which have reduced the number of severe headaches. Now I also wake up in the morning with numb and tingling upper extremities of unknown origin which improves as I am awake. I plan to see a chiropractor again and I also am having

At this moment, I have made several changes in my life to help me accomplish my goals. The recent Winter Olympics in Sochi, Russia has increased my motivation. Though it would be a dream come true to participate in the Olympics those chances are slim. What I can do is take that Olympic training spirit and motivation into my training and cancer survivorship.

I have already signed up for a few races USAT National Championships and Med-City Marathon and have a pretty good idea of my event schedule for the year. One of the toughest decisions I had to make was to cut down on my coaching hours to accommodate training.  If I want to be a champion I have to put in the work. My nutrition is changing too and is another way to achieve my goals for survivorship and athletics. I have been reading about the role of nutrition in brain tumor survivorship. Maybe I will write a blog entry just on that.  In January, I joined the Cyclone Triathlon Team and l will be using their coaching starting in June. I have already started doing some swim training and bike training with the team. My longest run work out was last Friday with a 2.5 hour workout (2x (30 min of 2′ walk/3’run, 30 minutes Precor trainer) +30 min walk on treadmill at 15′ mile pace). The bike  trainer workouts are 1.25 hours including some intense intervals at race pace. The CrossFit Games Open starts next week but my CrossFit training is lacking. Overall, I have lots of expectations but I am willing to work hard to achieve my goals.

See you at the finish line,

~dmj

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MP_helenkeller

 

I have not posted much for last week because I was working mandatory overtime at my nursing job. If I worked out any, it was 1 mile walks  to Mayo Clinic for my MRI and neuro-oncology appointments. I start chemo again with Temodar 5 days on 23 days off for 6 months once it comes via UPS from the pharmacy. I did also officiate two high school soccer games on Thursday. I did one as a two man referee and one as an assistant referee. It was one of the hottest days of the year. I an burnt out and tired. My legs are sore and I can barely walk. I did get my physician to write a letter stating no overtime and no double shifts. It will be interesting to see if my employer  abides by it. 64 hours in one week is too much for anyone especially if one has brain cancer. It is not safe, I was lucky I did not make an error or at least one that was noticeable.

 

 

2013 Tour de France

2013 Tour de France

 

Highlights
Continue watching Tour de France. CrossFit scaled WODS continue Karen, Elizabeth, and kettlebell class. Rash an arms continues. Shadow Stoke /Turn Judge for National Junior Disability Championships short course swim meet. Visit with neurooncologist. Returning to work July 22, 2013. Radiation treatments half over. Relay for Life.

More details to come

MP_determination

Reminder to self

Today was the day I saw my neuro-oncologist (NO). I did not even sit down and I was called for the appointment. “He is ready for you,” was the reply I got from the medical assistant. The diagnosis is what I expected from the MRI. My NO said that I have grade III anaplastic astrocytoma. He stated that even though the surgeon the visible tumor, I would be required to have 6 weeks, 5 days per week, of radiation therapy.  Plus, I would be eligible for a chemotherapy trial as scientists are not sure if chemotherapy, Temozolomide/Temodar (TMZ), is effective for grade III glioma. As my NO continued to examine me, I told him that the caffeine was effective in relieving my headache. During the appointment he told me that I could contact a fertility doctor, for concerns about my desire to have children. I started asking him about the causes of the tumor, but he stated that there is nothing I did that caused it-just bad luck. He was very helpful in answering all my questions.

Once my NO left, a nurse entered the room with resources. She gave me a binder and a folder full of patient education material from the American Brain Tumor Association, Mayo Clinic, and American Cancer Association. The nurse reviewed it thoroughly with me. In addition, she urged me not to look online at survival times because as she stated tumor location, amount removed during surgery, individual’s health, plus a number of other factors determine survival. Then I told her about someone I knew who lived with a brain tumor for 15 years. I asked her if she heard of Johanna Olson. She shook her head and said yes.

Johanna Olson

Johanna Olson was my teammate when I joined the Luther College track team during my senior year. Johanna had won the 2000 NCAA cross country championships on the third anniversary of her first brain surgery. She also anchored the indoor distance medley team that won the national championship. She also ran in two Olympic marathon trials 2004 and 2008.

I had never run track before, but I was interested in another sport and I wanted to prepare for my future triathlons. Every day I looked out of the window from the cafeteria at the blue track and wanted to join the track team. I knew I was a good runner, but perhaps not championship quality. After swim season ended, I joined the track team. On my first warm-up with the distance squad I felt like I was racing. Johanna looked back and asked, “are you OK?”    Johanna was always concerned about her teammates and an inspiration to all.

After the nurse, came research study coordinator. She informed me about two studies. The first was a biobank study requiring me to donate a blood sample and fill out a questionnaire. I signed up for this one. The next was the chemotherapy trial, which I reserved signing for a later date.

Time to eat a good meal at Chesters. I ate salmon, cranberry-walnut salad, brie cheese curds, and strawberry shortcake.

During the evening, I went to the Rochester Athletic Club to walk on the track and for a book signing. The book that was being signed was, Determined to Matter, by Jen Ohara. Jen’s book shares the blog that she wrote and their journey with their teenage daughter’s battle with a brain tumor. As I approached the signing table, I wanted to tell them about my diagnosis but I did not. Little did they know, the woman standing in front of them was told she had brain cancer earlier that day.  I highly recommend reading the book and proceeds go to brain tumor research scholarships.

My workout of the day (WOD) consisted of a 5 lap walk around the track.  During this time, I wished I could be lifting weights like everyone on the fitness floor. I remind myself I will be soon.