Posts Tagged ‘radiation therapy’

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

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

My USA Triathlon Sprint National Championship Experience

MY MOTIVATION

TRI-UMPH

TRI-UMPH

 

The day was Sunday August 11, 2013. Place Milwaukee, WI.  I had been waiting for this day since last Fall. I am a former elite triathlete and triathlon coach. This was supposed to be a race to be competitive and do well but the plans changed with my diagnosis of anaplastic astrocytoma and 7 hour brain surgery. Brain cancer was not going to stop me from neither starting nor finishing. In the back of my mind, I knew I was doing this for a cause, the American Brain Tumor Association and for those who cannot. It had been 11 weeks since my brain surgery and just over a week since my last oral chemo dose and radiation treatment. I had been unable to train much because of post-surgical restrictions, slowed recovery from chemotherapy, and fatigue from treatments. I reminded myself with a quote from President Obama at the Boston Marathon Memorial Service, “Even when our heart aches, we summon the strength that maybe we didn’t know we had, and we carry on, we finish the race.”

PRE-RACE

Pre-race Reminder

Pre-race Reminder

My morning started with getting my race kit on, my chip on, my race number tattoos on and drinking my meal replacement shake mixed with coffee.  Off to the race, just a 15 minute drive from the hotel to the Milwaukee lakefront. I was one of the first in transition, but where is my chip. Oh, we cannot leave transition bags in transition. One minor problem, my chip was gone. I spent over 15 minutes getting a new chip and renumbered. Where was I going to put my fancy transition bag that I won at a Duathlon a few years ago if I did not connect with my Mom?

Well I met up with my Mother then gave her my bag. I put on my wetsuit on and she zipped it up. The national anthem played, but I still had over an hour before my wave would start. Next, I headed over to the swim start and stood by the railing overlooking the harbor. I talked about the race and triathlons with other racers. We watched wave after wave begin.

SWIM

Done with the swim

Done with the swim

Finally, my wave was called. I walked down to the dock with other triathletes in my age-aroup and crawled into the cold Lake Michigan water. We had about 10 minutes to warm-up. My second open water swim this year. My third time swimming since my surgery in May. We lined up next to the dock and the horn went off. I started slow, kept it steady, and concentrated on my form. While swimming, I got a little dizzy from turning the head to breathe but that was not going to stop me. The swim went under the bridge, around the buoy and back under the bridge to the swim exit which was a metal ramp with wooden rungs. There were catchers to assist. My time was 17 minutes for 750 meters swimming, which was when I crossed the timing mat so it included some extra running.

T1

Thoughts for T1

Thoughts for T1

I was so excited that I finished the swim I ran into transition put my bike gear on. My bike gear did not include my aero helmet as I wanted to make sure I had a secure helmet. Under my helmet was a sweat cap to protect my bald spot from radiation therapy and surgical scar from the sun and my helmet. Next I ran with my bike out of transition. Someone was ahead of me. I tried being nice and letting them go first but they were too slow. This is the ten seconds that cost my one place in the Athena under 40 division or maybe it was the ten seconds that I choose to put sunscreen on after the bike.

BIKE

Up, down, and around

Up, down, and around

The bike was relatively flat. I kept a high cadence and built the bike portion. Not taking it out too fast and finishing stronger during the last few miles. There was a small hill before the first turnaround and a ramp to a bridge that we went up and down one way and reversed on the way back. I was able to remain seated in the saddle on these hills thanks to my CrossFit workouts. My average mph was 16.7 over 12.4 miles.

T2

Motivation for T2

Motivation for T2

Came in on the bike to run transition and continued to run my bike into transition. I put my running shoes on casually and took off putting my hat and number belt on the run.

RUN TO THE FINISH

Keeping a slow but steady pace

Keeping a slow but steady pace

I ran the first mile without a walk break. During the second and third mile I took 1 minute fast walk for every 3 minutes of running. Racers were passing my left and right and some with names and USA on the back of their tri suit saying “good work” and ”keep it up”. I kept my own focus throughout the run.  Once I heard the finish I continued to run it came up so fast. When I got to the carpet I was filled with tears. I took off my TriRochester cap and pointed to the bald area on my head while I heard Karen Smyers say, “Dawn Johnson from Rochester Minnesota still top 10 in the Female Athena division” I had finished my first triathlon of the year and my first triathlon since my brain cancer diagnosis. To top it off, I was honored to have Chrissie Wellington hand me my finisher’s medal. Overall, my run was 37:01 for an 11:55 min/mile pace. Here is the link to the finish video http://www.marathon-photos.com/scripts/event.py?event=Sports/CPUK/2013/Age%20Group%20National%20Championships&match=4178&name=Dawn

POST FINISH

FINISHED

FINISHED

 

 

I stayed long enough to get some food and wait to get my bike out of transition. Since I had placed, I was upset that I could not stay for the awards ceremony.  I had to get back to Rochester, MN to work night shift at my nursing position. My plans are again to race and place again at the National Championship event next year. Maybe even earn a spot to Worlds. The sky is the limit.

~dmj

 

 

 

 

 

 

Swimming weekend

This weekend was a true water stop. I spent almost the whole weekend at the Rochester Recreation Center Pool shadow officiating and coaching the Regional Age Group Championships. Friday I came from radiation to the pool to shadow. The pool was hot and I had sweat dripping down my back. I felt dizzy and like I was going to fall forward into the pool. The experience was good, and I am more prepared to be a swim stroke and turn judge.

Saturday morning I went to the Rochester Brains Together for a Cure brain tumor support group. A nice little group that meets on the third Saturday of the month, but it freaks me out every time I attend. I shared my experience with aromatherapy and massage. Plus shared my dislikes and fears that I had to go back to work on Monday.  Saturday, I spent the early afternoon Olympic weightlifting at CrossFit Progression for a PR challenge and lifted about 85% of my former PR. 72.2 lbs for snatch and 95 lbs for clean and jerk. Next I headed to the rec center to get some coaching experience. I have not been at a meet coaching my current team, so I thought that this would give me some experience. Was a good experience and I got to meet some of the older swimmers on the team since I usually only work with the younger swimmers. I learned a lot observing the other coaches interactions with the swimmers and got to cheer my club on at the meet.

Sunday morning I woke up with a kick butt headache. This was my first headache in some weeks. I think it was over lifting on Saturday, but I cannot say for sure. I decide to sleep until the headache resolved and possibly even missing the first session of shadowing. The headache quieted enough where I decided to go to the pool. I got some good training from the referee and starter. They were very interested in helping me be successful and they let me have two lanes of the pool to judge while they observed me. I still felt dizzy like I was going to fall in the pool and I had to stand by the diving board base to hold me up. In time, I did not like the idea of leaning over the pool. Well, I survived the weekend and it was back to my nursing position Monday night.

~dmj

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

Hair loss. Scar. Why I wear a hat.

Hair loss. Scar.
Why I wear a hat.

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 neuro-oncologist. Returning to work July 22, 2013. Radiation treatments half over. Relay for Life.

More details to come

 

WOD Box jumps, jumping pull-ups

WOD= Box jumps, jumping pull-ups


Highlights
Pet bird Rio dies on July 4, 2013
Mowed lawn
Return to CrossFit
New birds Sochi and Ronaldo
Full post in the works

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.

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.