Archive for the ‘Mayo Clinic’ Category

CF_open2014I am still determined. Wow, I have been so busy training and living life that I have not posted for quite a while. So much has happened that has been positive in the last several months. By now I do not even feel like I am in remission from brain cancer. The only things I notice is that my incision hurts every once in a while, I have a scar, my hair is shorter on the front of the left side of my head, and my occasional severe migraine. Thankfully, I think my planter fasciitis that I have been dealing with since last fall has calmed down in my R foot so that I can start running and being active. I started a new job last week as a nurse at one of the best retirement living communities around. Recently I discovered a miracle juice called XanGo that helps fight cancer and reduces inflammation. It’s effects are currently being studied by Mayo Clinic. I hope it works to calm down my migraines and incisional pains from my brain cancer treatment. I already feel better with only a few days on the juice. You can contact me for more information and to order this amazing juice.

I have started working with a personal trainer and dietician to get my weight down and work on my diet. This is the biggest challenge for me. I know what I need to eat and avoid but actually doing it has been a challenge. My diet is slowly improving although I have yet to lose any weight.

MP_determination-runner

After several months off from CrossFit, I decided to sign up for this year’s CrossFit Open. I am excited because they will have scaled options this year. After not posting a score for the last workout of the 2014 Open. This year, I want to post scores for all workouts. The scaling options should help. I had originally signed up to compete as a member of a new CrossFit gym in town but just changed my plans to compete with my former gym. This open will be exciting because they are making it big with an event called “Friday Night Lights.” Stay tuned for new and exciting posts.

 

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BT_cancer_cannot

March 22, 2014 represents the anniversary of learning that I had a possible brain tumor. After I nearly blacked out while driving home after work, I went to the ER and waited 2 hours just to get in. I told them what happened. They did several tests including a head CT. When I asked about my CT results the staff replied, “Well there is a spot on your CT scan, we do not know what it is but we will have neurology see you.” The neurologist came in did  thorough neuro-testing. He stated that the CT results like what I had represent 90% of the time meningioma, a benign brain tumor. I was discharged from the ER with a follow-up appointment in a week.
The next part of the story, which is written in previous posts, should have never happened at Mayo Clinic. Very few brain tumor survivors and caregivers that I have talked to had to wait over two months from when they found the tumor to the actual  biopsy let alone after a seizure wait over a month to get on medication. I guess looking back if I known the seriousness of the issue I would have been more proactive but I believed what the ER doctor also believed that the tumor was meningioma. In reality the tumor is an evolving astrocytoma meaning it starts as a lower grade and progresses to a higher grade (more malignant) over time.

Rochester Barbell Club members at MN LWC

Rochester Barbell Club members at MN LWC

Fast forward one year to March 22, 2014. On the same day one year later I competed in my second Olympic weightlifting competition, the Minnesota LWC Championship. Although not much of the US knows about the sport and the number of competitors at the meet was small with well less than 70 competitors, the sport is growing and becoming more popular in the US thanks in part to CrossFit. It is my new found sport and although I am not that strong relative to the competition it forces me to keep getting stronger. Weightlifting is as much of a mental sport as much as physical sport. Although you may have support from your team, coach, and the spectators, in reality it is just you, the barbell, and the referees. I repeat it is just you, the barbell, and the referees. So when a bad lift was called on my snatch on what I thought was good I became upset. I told my coach that I did not want to continue with the competition because my lifts were going to be called bad-no lift. Well, I continued with the competition with good lifts on my clean and jerk and totaled. After my competition was over, I stayed for the rest of the competition which included the rest of my club, my coach and an 8 year old boy and cheered them on to PR’s. One year later I am a weightlifter now and forever.
~dmj

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

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

rochester fest

Mom and I in disguise at Rochesterfest

Note to self

Note to self

This week I continued to press on. Friday, prior to Rochesterfest, I guy came up to me in radiation from cancer research. He had wanted my permission to donate my tumor to research for genetic testing. No question, of course, so I signed the necessary paperwork. Soon my brain will be sitting in a lab somewhere in the world. My daily WOD includes 45 minute walks at the Rochester Athletic Club with some light weights. One day I did go to Empower class but was stuck using the 9# bar the whole time.  Friday, I walked in a 1 mile race before the Rochesterfest parade then walked in the parade but was exhausted at the end. Unfortunately, I do not think I burned enough calories during these WODS to make up for the corndog, funnel cake, brat, and onion rings that I had at Rochesterfest over the week.  The people at Charlton Desk-R where I get my radiation treatments now know me by name. I do not know if that is a good or bad thing or if it comes with the territory. My blood tests are still relatively stable but the headaches continue.

MP_WOD

I have completed  over 15  marathons, so I am comparing radiation to a marathon. I have 33 radiation treatments planned so I am counting down just as the miles in a marathon. Likewise, just as a the miles in a marathon, after each treatment I get a little more fatigued. Four days have passed on my “33 treatment marathon.”

Day 1: Honesty, I did not know what to expect. I knew I would have the radiation mask and be pinned to the table. As I laid on the table, I heard the machine moving and saw lights flashing behind my closed eyes. Went to hatha yoga but I knew my poses would be limited and no downward dog. Walked 15 minutes on the track at the RAC.

Day 2: Saw the radiation NP today. Finally got my blood tests ordered. Then radiation with Adele. When the  treatment was over I spoke with the radiation nurse educator. She said the lights flashing is common among people  getting radiation to the head. Sometimes people smell weird aromas. She said to use Aquaphor or a lotion like Vanicream on my skin in the radiation field to protect it from skin breakdown. WOD included 30 minute walk on RAC track plus stretching.

Day 3: Saw radiation social worker in AM and talked about advanced directives.  I think I have an infected ingrown toenail so I told me social worker and she brought in  my nurse. My nurse told me to go to primary care to get it looked at because it may get worse. I wanted to treat it myself. Appointment made for 3:10 PM.  Then off to Thursdays on 1st for lunch. For those outside of Rochester, Thursdays on First is a Summer weekly event with music, food vendors, and artists/crafts vendors. From 11 AM through the evening. Next off to radiation treatment. No Adele today just some soft background music. Done. I had 1.5 hours between this appointment and my next so I  sat down and worked on my advanced directives. I headed over to primary care for toe appointment, the NP confirmed it was an slightly infected L great ingrown toenail. Got an order for topical antibiotic and must soak foot 2x day for 30 minutes in Epsom salt. Went to RAC after appointment. WOD included walking 45 minutes and 15 minutes mobility.

MILE 4

MILE 4

Day 4: Woke up to thunderstorms. After the storms passed, went to Target in the morning to pick up some prescriptions. Then Panera for lunch. Home to Facebook. Next off to radiation. Home for the night. Time for lawn work. Taught my Mom how to mow my lawn and I picked weeds. Super tired. Stayed up to watch the weather because of risk for storms in Rochester and the storms that were in the TC metro. Went to bed at 10:45 but had to get up to take my chemo pills at 11:45. Up again in the basement at 2:30  with a severe thunderstorm warning. Next I noticed my basement was leaking water. Went back to bed after the storm passed and thought I’ll clean it up later, but my Mom helped a little. Time for the weekend.

what a pain!

What a pain!

This morning I woke up at 5 am with another awful headache but this time it was on the right side. I thought, did I overdo it yesterday? Took caffeine, decongestant, Tylenol, and Oxycodone nothing relieved it. Nausea and dry heaves were present. Ginger EO did only lessened them. I give up!
Went back to bed and that is where I remained the majority of the day except for the home improvement guy coming over. I thought he was coming over at 10 AM but he came at 9 AM to fix my storm door and roof. He found that my roof had a dip and I needed my frame repaired. He opened up my attic and it began to snow insulation. The contractors that had done my insulation had not placed boards and a tent over my attic door. More problems. Luckily the work has a warranty.  What a pain!
Trying to get my chemo medication is another pain. I spent over ½ hour on the phone trying to figure how much it will cost and how to get it. Finally I hung up because my headache was so bad. What a pain!
The headache just kept getting worse the only thing that made it better was my Young Living essential oil Deep Relief blend that I use on my sore spots after a workout. Maybe I had increased intracranial pressure (ICP). Maybe I needed steroids like Decadron. The pain was so bad I began crying after 1 hour of crying and no resolve. I had my mother call my NO my NO’s nurse told me to call the surgeon and the surgeon’s nurse told me to go to the ER. There was no way in hell that I was going to wait in the ER in this much pain. I’d rather die. I knew to get over this I had to sleep. So I took a concoction of medications, AdovCare Sleep works (includes melatonin and 5 HT-P), and rolled on some Young Living Ruta Vala blend which includes lavender. The rest is history. I woke up at 3 AM the next morning with only a slight headache.

Example of a radiation mask

Example of a radiation mask

My day started off meeting with the radiation social worker. We mainly discussed employment issues and disability. I found out during our discussion, that she is from the same hometown as I am- Rockford, IL. Before our appointment finished she was paged by my radiation oncologist, he was ready for my simulation appointment.
I walked down the hall to a room with a CT scanner type machine. The techs showed me a mask that was molded out of a plastic mesh then they showed me what it looked like in a bag prior to being molded into a face. They had me lie on the table of the machine and put the mask over my face and clipped it to the table. Then they placed a band around my feet and gave me a foam ring to hold. Next they molded the mask to my face and let it dry. This mask would be used to restrain my head during treatment and be used to hold the markers of where to direct the radiation.
So I just laid there while a CT scan was completed and the radiation oncologist figured out what area of my brain he would target. While I was there I saw flashing lights and the pressure pain built up behind my left eye, so that I could not stand it. I felt like I was going to faint right on the table. I started raising the blue ring in the air as a sign of distress. One tech said, “Hold still just a few more minutes.” Finally the techs came out and placed the markers on my mask and unhooked me from the table.
One of the techs gave me a tour of the facility and the saw the room where I would spend 6.5 work weeks of my summer and I got my appointment time for my first treatment.
After my appointment, I walked to Macs for breakfast. Then I went home to get ready for my workout.
My WOD consisted of 30 minutes walking on the track, 10 minutes of strength training with 5-8# weights, and 10 minutes of stretching.