Posts Tagged ‘Mayo Clinic’

Christmas in Rochester, MN

Christmas in Rochester, MN

Happy Holidays,

I hope this post finds you well.  2013 was a tough year for me. The year brought both challenges and rewards. In March after having a CT for “spells” where I would not be able to use my legs and arms or blackout, I learned I had a brain tumor. After further imaging and surgery to remove the tumor on May 24, I learned that it was grade III anaplastic astrocytoma, a malignant brain tumor.  I spent much of my Summer at Mayo Clinic with 33 radiation treatments and adjunct oral chemo therapy.  That treatment is followed by oral chemotherapy 5 days each month x 6 months. I have completed 4 cycles so far and my MRI is stable.

I am still working at Golden Living Center-Rochester East skilled nursing facility in Rochester. During the beginning of the year I worked day shift but switched to nights in April because of a staffing shortage then stayed on nights after returning from surgery. Most of our residents are Mayo Clinic patients but we also care for several Olmsted Medical Center patients.  In addition to nursing, I am still an assistant coach for Med-City Aquatics. During the Fall, I coached mostly 10-13 year old swimmers and the adult masters group. I also earned extra cash as a soccer referee for youth, high school, and adult games. I also earned extra cash as a Mary Kay Skin Care Consultant and AdvoCare nutrition distributor. In addition to the above, I am still working on building my holistic wellness consulting business, Winning Wellness Solutions.

Even though my training was limited last year, I managed to participate in several events. Although about every event I participated in it rained. I finished in the lower middle third of the CrossFit Games Open. I raced a few 5K’s. My first triathlon saw cold 54 degree water temps and low 50’s air temps. I entered the water did about 50 yds and swam back to the shore. Half of my heat did not even start. The next day I participated in my first long-course meters swim meet which was held at the University of MN. During the summer, I walked a 5K as a relay in the RochesterFest Triathlon and walked a 1-mile race prior to the RochesterFest parade (and walked in the parade afterwards). The biggest highlight of my athletic pursuits in 2013 was competing in the USAT Sprint Distance National Championships in Milwaukee, WI. This was only 9 days after my last radiation treatment.  I managed to finish the triathlon. In September, I started tennis lessons.  I officially became a weightlifter in October after competing in my first sanctioned Olympic weightlifting meet.

I am in the process of applying to graduate school to earn a PhD in nursing.  Also, I just recently joined the St. Marys Hospital Auxiliary to volunteer in hospitality. My athletic goals for 2014 include Med-City Marathon, Minnesota Cup weightlifting, CrossFit Open, Ironman 70.3 Muncie, IN, USAT National Championship, and in my dreams an Ironman Inspired Kona spot.  My main goal for 2014 is to stay healthy. Thanks to all those who helped me achieve my goals in 2013.

Best Wishes for a Happy and Healthy New Year,

~dmj

Below are images from 2013

FINISHED

FINISHED

I am wearing the red swim cap

Luther College Alumni Meet

Keeping a slow but steady pace

Keeping a slow but steady pace

Thanks Coach!

Thanks Coach!

Up, down, and around

Up, down, and around

TRI-UMPH

TRI-UMPH

rochester fest

Mom and I

My incision CDI.

My incision CDI.

MN Open snatch

MN Open snatch

The bell rung

The Bell

Ready for treatment

Radiation therapy

LC Alumni Soccer game

LC Alumni Soccer game

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Amen

Amen

I am wearing the red swim cap

Luther College Alumni Meet

Women's Session 2

Women’s Session 2

MN Open snatch

MN Open snatch

MN Open Clean and Jerk

MN Open Clean and Jerk

So October has had its ups and downs.  My athletic pursuits have included Luther College’s Alumni swim meet and The Minnesota Open Weightlifting Championships in which my performance was hampered by a bought of bronchitis and asthma exacerbation that need antibiotics. I also was on the last day of a 5 day oral chemotherapy course for the weightlifting meet and worked night shift the night before. I am happy,  I got a total on my lifts for my first weight lifting meet even though I missed 1 of my snatches and 1 clean & jerk.

I also went to the ER last week with a strange cluster of symptoms likely cause by a number of things working together. At the ER I learned my lymphocyte count was low which makes me a little worried especially when I work with sick people. My energy is low and I have been so busy that and little time I have I need to sleep or relax. My house chores are not getting done.

Today marks 5 months since my brain surgery. My incision has healed and my hair is starting to grow back. I just hope my tumor is not growing back. Although my last MRI showed a contrast enhanced area on the border of where my tumor was removed. My physicians are leaning towards scar tissue but are uncertain. Only time will tell if this is tumor growing back. If it is tumor, hopefully chemo will shrink it. I have my next MRI in about 1 month.

Today also marks the beginning of marathon training. The only way I can stay focused on exercising is if I have a goal.  My goal is to run the Med-City Marathon and 5K to mark the anniversary of my surgery and brain cancer diagnosis.  The Med-City Marathon weekend is Memorial Day Weekend the last weekend in May. May is also Brain Tumor Awareness Month. I am already planning to wear grey for the marathon and run the marathon to raise funds for brain tumor research.  Gotta  get my strength and endurance up to help find a treatment and a cure for this awful disease that is the leading cancer killer among youth under 20, the second leading cause of cancer deaths among males 20-39, and the fourth leading cause of cancer deaths among  females  20-39. These statistics are unreal since only about 25,000 people are diagnosed in the US each year with a malignant brain tumor and the majority of the people diagnosed are 40 and over.  Although the term brain cancer also includes some non-malignant tumors.  1 step closer to 26.2 and 1 step closer to a cure.

The WOD 10/24/13: CrossFit then 30minutes of 200yd run, 200yd walk

~ dmj

Thanks Coach!

Thanks Coach!

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

Ok, just analyzing how unlucky I am to have anaplastic astrocytoma. The incidence of anaplastic astrocytoma is 0.49/100,000 that means about 1,500 people in the US. It is a relatively rare disease. I think more people win the lottery each year. Likewise the breast cancer rate is 123.1/100,000 in the US.

What I am lucky for.
I live down the street from Mayo Clinic and can see it from my house. They have been providing me good care. My tumor was in the left frontal lobe away from critical structures. The visible tumor was completely removed during surgery.
~dmj

paleo pyramidIt is Monday time to go back to “work” in my current job as a cancer patient. This morning, I had my visit with my radiation oncologist. I left home but I wanted to have coffee on my way to the appointment. When I got tot desk “R” I was in luck. A Mayo volunteer came over and asked if I wanted coffee or juice. I said, “yes”. Before I got my coffee I was called back to my appointment but the medical assistant waited until I got my coffee. As I sipped on my coffee, the doctor and I discussed risk and benefits of radiation. I have to wait 3 weeks after my surgery to begin radiation for head to heal better. He told me that I would have 33 radiation treatments over 6.5 weeks. These treatments would start June 17. Radiation would cause hair loss on my head in the front on my left side and possibly the opposite side where the radiation would exit. We talked about the medication study that I would be possibly entering. My simulation appointment would be tomorrow and I would meet with the radiation oncology social worker to discuss “social issues.”

After my appointment with the, radiation oncologist I attended a class about nutrition during cancer treatment. I will have to stop taking certain supplements and vitamins because they will interfere with the action of chemo. Those substances include mainly extra antioxidants. The instructor, a Mayo Clinic dietitian, had a whole slide committed to sugar and cancer. This slide stated that sugar does not cause cancer growth. No studies have supported any side of the argument so I still plan to maintain a low carb, semi-paleo diet (see above plaeo pyramid) during treatment and have my AdvoCare protein shakes.

Next, I stopped by the Erickson Skin and Hair Care Center to get a dressier hat or scarf than my TriRochester hat. Then I went for lunch but I forgot my wallet so I had my mother drop it off. By the time she got there, all I had time before my next appointment for was Jimmy Johns.

At my next appointment was with the fertility clinic to talk through my options about having children after my therapy. They included in vitro fertilization including embryo or egg preservation or hormone induced menopause.

By the time I got home I was so tired that I decided to stay home and forget about my workout. So, my mother and I had a deep discussion about my chances of making her a “grandmother”.

~dmj

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.

memorial day

Happy Memorial Day.

Thank you to all the men and women who served.

Called and talked to the resident on Dr. Parney’s team, Dr. Oriam, about the pain. He stated if I needed to, take two Oxys every two hours. So I am going to do that and rest.

~dmj

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

MP_obstaclesI finally met with my assigned neuro-surgeon today. It looks like I have to wait another 3 weeks til surgery. And of course the week before Memorial Day.  That is too long when you know that something is growing inside your head. I am sure; if I lived outside of Rochester I would get in sooner. He stated my tumor is likely a grade II glioma with possibly part grade III. I must be at the hospital at 5:30 AM.  My surgery will be 7 hours long and use the MRI surgical suite. Since my tumor is next to the motor strip it will involve motor mapping technique.   I am not too happy about the risk of permanent right sided weakness. 6 weeks for sure with no lifting greater than 10 pounds. No CrossFit. Permanent titanium metal placed in my skull. At least I get to keep part of my hair. At least one day in ICU.  Again, Mayo, not too happy about the wait. Let’s get it over with.