Posts Tagged ‘nurses’

 

MP_cancer death

Yesterday I went to the gym to row 15 minutes and got to Olympic weightlifting skills class. I was stronger than last week so that was a positive.
I feel so alone. I have posted the picture “no one fights alone” but I feel like I am fighting alone. Everyone asks how they can help but the most I need is someone to understand what I am going through. I can not find someone who understands that I feel to whom I can share my fears and needs. I feel guilty asking people for help with chores. I felt guilty and took a hit from my employer when I asked for a 40 hour work week and no 16 hour shifts. I am hired for 32 hours/week. It took several notes from my doctor to get this restriction. Is alopecia from radiation and surgical scar not enough evidence. Do I really need to go on disability? People have offered to help but then when I ask for it I get turned down. Other people I met with this disease have caregivers to help but feel like I am all alone. No one to listen about my fears of uncertainty. Yes, I can workout, complete a scaled WOD but in the big scheme of things I feel alone, scared, weak, and frustrated. I am stuck in a moment that I can not get out of.

~dmj

PS. If you have an answer on why I can’t upload new images from my desktop to Facebook and WordPress gallery please let me know. What is a blog with the same images?

 

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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.

 

 

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.

May 24, 2013

BT_surgeon

OK, for this one I am resting. It is your turn doctors, nurses, and ancillary personal to get your workout….

Overall above average completion. Thank you to Dr. Parney and his team at Mayo Clinic who spent their day looking inside my head. To the nurses and staff on 8 Mary Brigh and 9 Mary Brigh who were awesome despite my IV infiltration. One note to PACU it is not fun to wake up and be in pain and not be able to breathe.

Great work! And I can still move all my extremities.

St. Marys