Posts Tagged ‘Brain tumor’

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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Grey is Important Too

Grey is Important Too

According to the Central Brain Tumor Registry  of the United States.

An estimated 14,930 deaths will be attributed to primary malignant brain and central nervous system tumors in the United States in 2013.

Five–year relative survival rates following diagnosis of a primary malignant brain and CNS (including lymphoma, leukemia, tumors of the pituitary and pineal glands,  and olfactory tumors of the nasal cavity) by age of diagnosis (1995-2010 data):

Age 0-19 years: 73.0% Age 55-64 years: 17.4%
Age 20-44 years: 58.1% Age 65-74 years: 10.2%
Age 45-54 years: 31.8% Age 75 or older: 5.8%

The following is the 5 year survival rates and expected mortality for breast cancer from the American Cancer Society

Total 40,000 deaths expected from breast cancer in 2014.

Stage

5-year Relative
Survival Rate

0

100%

I

100%

II

93%

III

72%

IV

22%

 

National Cancer Institute reports a 5 year survival of 33.4% for brain cancer versus a 89.2% survival for breast cancer between the years 2004-2010. Brain cancer is responsible for 2.4%  while breast cancer is responsible for 6.8% of all cancer deaths.

 

From the American Brain Tumor Association website:

Brain tumors are the:
second leading cause of cancer-related deaths in children (males and females) under age 20 (leukemia is the first).
second leading cause of cancer-related deaths in males ages 20-39 (leukemia is the first).
fifth leading cause of cancer-related deaths in females ages 20-39.

 

See the American Brain Tumor Association  website for more information on brain tumors and brain cancer.

Give the brain a thought.

Give the brain a thought.

Yes, pink is important too but without a brain, breasts are useless!

Most importantly!

BT_they all matter

Ok, I realize this happened about two months ago but here is my story and race recap:

USA Triathlon National Age Group Sprint Championships

I am thankful just to be able to tri

After the Finish

After the Finish

August 9-10, 2014

The whole weekend was great despite waiting in line for race packet pickup and to check my bike into transition. I was also upset to learn that I would not be getting the official race jacket at the race and the hat in my bag has the USAT logo upside down. I have yet to receive my jacket in the mail several weeks after the event. The elite super sprint triathlon was great was also a highlight of the weekend. That event is one I would like to do in the near future.

Upside down USAT logo

Upside down USAT logo

Super-sprint

Super-sprint

This was it. It was time to start and finish race that I decided to make my goal race of 2014. This was decided when I crossed the finish line in the 2013 National Age Group Sprint Championships. It was then, when I made the attempt to finish the triathlon less than three months after having brain surgery, after 6 weeks of oral chemotherapy and only 10 days after finishing 33 radiation treatments for anaplastic astrocytoma in the left frontal lobe of my brain. Now a year later I was still alive and ready to race again. Like last year prior to my diagnosis, I expected to be competitive by finishing in the top 25 in my age group.

2013 FINISHED

2013 FINISHED

My training had been going well even during my monthly cycles of oral chemotherapy which ended in January. I had joined the Cyclone Triathlon Team last fall and tried to attend at least 1 swim session and 1 cycling session. In April, the day of the Minnesota State Masters short Course Swim Meet I caught a virus which plagued me for most of the spring and early summer. This virus caused an exacerbation of my asthma and chronic cough that made it difficult to train. Like last year I still expected to race hard and do the best I could.

Finish line

Finish line

Race morning began at 4:15 when I woke up had my coffee and oatmeal. Then I prepared my electrolyte race beverage Next I donned my Cyclones Triathlon Team kit and TriRochester long sleeve shirt and pants. It was a cool morning so it was a good choice. I had already applied my race numbers the night before to save an extra race morning step. It was time to head to the race site which was about a 17 minute drive from my hotel.

Once I arrived in the transition everything went smoothly. I unpacked my race bag and sent up my transition for the big race. The fancy bikes and equipment other athletes had around me was intimidating. I left the transition with my wetsuit on and my cap and goggles in hand for the swim start. This year was nice as I would not have to wait around 1 hour prior to getting into the water as I was in the second heat and was able to warm up for longer in the water prior to the start of the race. As I climbed down the ladder into the cool Lake Michigan waters, I was comforted and confident that my swim training with the Cyclones Tri Team would get me to the end of the swim fast.

Swim done

Swim done

The horn sounded and I was positioned in the back of the pack. I waited about 5 seconds before I started swimming to avoid splashing water and the mess of the pack. I stayed close to my strategy of swimming towards the buoys and staying on the inside but yet swim around them. About half way through the swim, I aspirated some water and started coughing. It took about 30 seconds of me swimming above water breaststroke to catch my breath enough to continue swimming. After finally starting to swim again, I swam strong and fast to the swim exit. Up the metal ramp I went grabbing the hands of volunteers that were assisting us. Swim 750 meters in 15:50.

 

 

 

 

 

 

Holding my own on the bike

Holding my own on the bike

To the transition I ran, I actually ran out of the swim to the transition area. In the transition area I quickly changed into my bike shoes and helmet and sprinted out. As I began to ride my bike I focused on pacing to not start out too fast. People began to pass me but I held my own. The worse pass I got was a man who passed me and began going slow. Everyone was passing me and I could not pass this man. I could not even pass him at the turnaround. Once I got past the turnaround I passed him never to be seen again. Overall, I was not happy with my bike time, but I had spent little time training for the bike so I had no excuse for a slow time. Bike 12.5 miles in 44:18.

 

 

 

 

 

 

Finsihing

Finishing

I rushed into the transition and headed out to the run. Using an interval timer from Jeff Galloway to set these intervals, I planned to run/walk with a ratio of 4 minutes running to 1 minute walking. The run actually went by fast. I had people cheering me the whole way and even while passing me they said, “good job, keep going.” I replied “good job” in response. I just stuck to my plan and the fact that people passed me did not concern me. The finish line came up quickly and I sprinted to the finish and ran across the line again hearing Karen Smyers call my name, “here is Dawn Johnson from Rochester, MN.” I finished the 5K in a total run time of 34:36 and a total for the triathlon of 1:40:45. Overall, I finished 71/81 in my age-group.

 

 

 

 

 

 

When I finished I headed to the post-race lunch, cheered other triathletes to the finish, enjoyed the beautiful weather, and gave God thanks that I can still tri.

tri_quote MJ

5 K Medal

5 K Medal

 

2 Day Challenge Prize

 

 

 

 

 

 

 

Last year on Memorial Day Weekend I was in the Neuro-ICU recovering from brain cancer surgery. 1 year later, I finished the Med-City Half-Marathon  in 2:52 and the 5-K, the 2 Day Challenge, to celebrate 1 year as a cancer survivor. I like to thank all those people who made this finish possible.
In the past couple of months I have been busy, so busy that I have not made time for posts on this blog. My original plans were to finish the Med-City Marathon but in April I decided to switch to the half-marathon. This was a good decision, because I finished strong, enjoyed the perfect day, and was able to walk after the race.  I wore brain tumor awareness shirts for both events and dressed in gray for both events for brain tumor awareness. My training included weekly long “runs” with the longest duration of training 3 hours and the longest distance of straight run/walk a 15K.
Of course, the respiratory bug that I had in April did not help my run training or the Minnesota Masters Swimming Short Course State Meet. I went to this meet the day after I became sick and basically showed up to the meet. I tried to swam as fast as

13.1 Medal

13.1 Medal

I was able even with less than 5 minutes of rest between some events. The only reason I walked home with medals was I was either the only swimmer or there were only 1-2 other swimmers that were better than me.
Now with my first triathlon of 2014 less than 1 week away, I feel fitter, faster, stronger, and lighter than I have in recent years. In the race next weekend, I am going to leave nothing left at the finish.
There is another event less than 1 week away, my 1 year MRI. Yes, I am a little nervous, but who wouldn’t be. I am praying everything turns out fine. The truth is after a long year, I finally got my energy back, working longer shifts at work, and getting work done in my yard. Last weekend I went to my second annual Cancer Survivors Day event. I have been blessed, to meet all the cancer survivors I have met in this past year and by all that I have learned in the past year that has changed my views of cancer and life.
Citius, Altius, Fortius
~dmj

MP_stay fighting

CF_open2014

My best in the CrossFit Open competition was not good enough. The WOD’s this year just did not support my strengths and skills. Along with great coaching, and the support of my box I was able to get on the board and put in my best effort less than three months after finishing treatment for brain cancer.

WOD 14.1
Complete as many rounds and reps as possible in 10 minutes of:
30 double-unders
55-lb. power snatches, 15 reps
-started with double unders, something I gave up working on long ago. I may be fast at single jump rope but stink at double unders. My score was 7 for the WOD.

Almost to the top

Almost to the top

WOD 14.2
From 0:00-3:00
2 rounds of:
10 overhead squats at 65#
10 chest-to-bar pull-ups
From 3:00-6:00
2 rounds of:
12 overhead squats
12 chest-to-bar pull-ups
From 6:00-9:00
2 rounds of:
14 overhead squats
14 chest-to-bar pull-ups
Etc., following same pattern until you fail to complete both rounds

-can’t do pull-up so got score of 10 for the overhead squats at 65 pounds, which was challenging enough

 

Box Jumps

WOD 14.3
Complete as many reps as possible in 8 minutes of:
95-lb. deadlifts, 10 reps
15 box jumps, 20-inch
135-lb. deadlifts, 15 reps
15 box jumps, 20-inch
155-lb. deadlifts, 20 reps
15 box jumps, 20-inch
185-lb. deadlifts, 25 reps
15 box jumps, 20-inch
205-lb. deadlifts, 30 reps
15 box jumps, 20-inch
225-lb. deadlifts, 35 reps
15 box jumps, 20-inch
-I was able to get 97 reps. My best WOD of the open and the best WOD for my middle distance athletic type. I made a major mistake. I did not think I would get to 185 so I had to run to the racks to get the weights than load them. Probably would have gotten a few more reps if I had not made the mistake.

WOD 14.4
Complete as many rounds and repetitions as possible in 14 minutes of:
60-calorie row
50 toes-to-bars
40 wall-ball shots, 14 lb. to 9-foot target
30 cleans, 95 lb.
20 muscle-ups
-Rowing is one of my best sports and I was unsure about getting any toes-to-bar going into the WOD. Took it easy because of the weightlifting meet the next day but got 73, including 13 toes to bar.
WOD 14.5
21-18-15-12-9-6-3 reps for time of:
65-lb. thrusters
Burpees

– My box had a 20 minute cap but I still wanted to do the whole workout. When it took me about 15 minutes to get though a few rounds a dropped my rx’d weight and followed the 20 minute cap. The workout was doable but it would have taken me 45 minutes with all the rest I needed. Burpees are not my thing and jumping over a barbell with weights makes it more challenging. Took me several days to recover from this workout (well the 1.25 hour strength indoor bike workout the next day did not help my recovery either). DNF

I hope my best is better next year. I know it will because I belong to a great CrossFit community in Rochester, MN at CrossFit Progression.
~dmj

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

Survivorship and the CrossFit Games Open

This post talks about my experience in the first two weeks of the CrossFit Games Open, recent MRI results, training, the weather, and competition plans for 2014.

BT_cancer survivor

 

My MRI last Friday, March 7 confirmed that I continue in survivorship. The MRI appeared better than the last one and to celebrate I completed WOD 14.2 of the CrossFit Games Open with a score of 10 reps overhead squats at 65#. Double-under jump rope got me on the first WOD of the open, 14.1. Double-unders involve two rotations of the jump rope under your feet for each jump. I only got 7reps, but going into the workout I thought, will I get at least 1, will my Open be over in the first WOD? I gave up on double- unders last  Fall. Here is the link to my CrossFit Games Open Profile http://games.crossfit.com/athlete/68416

Almost to the top

Almost to the top

CF OPEN WOD 14.2

CF OPEN WOD 14.2

Maybe a pull-up?

Maybe a pull-up?

My training continues to improve despite the awful weather and road conditions. Yes, the cold weather and snow have made it difficult to get to the gym to get any training done. Yes it may look beautiful, but it is darn cold and I am not going to slip on the ice with only screws and plates holding a piece of my skull in place.

Nice Winter's Day Walk Cascade Creek 2014

Nice Winter’s Day Walk Cascade Creek 2014

In addition, I have decided on a tentative competition schedule for 2014. On March 1, I competed in the Minnesota Power Pull and got 1st place (well out of 2) in the Women’s Masters Division. My time, although not a post 30 y/o PR, was in the upper percentile of all female competitors even with little specific rowing training.

BT_powerpull

MN Powerpull 1st place medal

My next big competition is the Minnesota Local Weightlifting Club Championship on March 22. Even though I have been weightlifting about twice a week, I think I have hit a plateau and my weights have not increased for several months. Although despite not increasing weights, my form is improving with continued training. It does get upsetting when everyone else improves except you. Yes, they work hard to improve but I do too. I will take a hiatus from CrossFit at the end of March to train for endurance events like my marathon and triathlons. The only thing that is improving is my running. I am running faster and longer.  I cannot wait to get outside and go running along Cascade Creek on the bike trail just a few blocks from my house. This were I spent much of my time in the early 2000’s.

MP_eyeonprize

Other bits of life include finishing my soccer refereeing, working on my naturopathic degrees, trying to apply to PhD school, applying to other better jobs, coaching swimming, volunteering at the hospital, working at my nursing job, and getting my wellness business, Winning Wellness Solutions, on track.  Overall, I am keeping busy and keeping a positive outlook. I am going to just keep moving ahead and not look back.

~dmj

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

MP_learn to fly

Today marks 6 months since my craniotomy. My head and incision finally feels like it is healed. I am not getting and stabbing and jolting pain like I use to get when I landed from jumping or running. I had a few severe headaches in the past few weeks but none this past week not even mild. Work around the home that I left to the side is finally getting done. I took the Passion Test last weekend and found out my passions in life. The results have given new meaning to my life.  Last week I began my applications to PhD school for Nursing.  My Med-city Marathon prep plan is written but I have been lacking consistency in my training. I must get better at this.

My mouth is healing well from my oral surgery and back to normal with eating. Life is getting better but I am still feeling lonely, scared, and a little worthless. The Holiday season is coming and so is my next MRI.  All I want for Christmas is to be healthy and have a friend. Thanksgiving is upon us. I am thankful for everyone’s support in getting me to this point.

PS. Been too busy with life to make more posts to this blog so this is what you get

~dmj