Archive for June, 2013

Dawn at a triathlon last year

Dawn at a triathlon in 2012

Finally at a water stop AKA as the weekend when I do not have radiation treatments

Saturday: Went to a going away party for one of my fellow swim coaches for Med-City Aquatics. Next off to register my team for the RochesterFest Triathlon. Then off to a birthday party for a friend but the skies looked ominous so I went back home to another round of thunderstorms.

Sunday: Tri-ing day
I woke up at 4:30 AM to be a part of a relay in the RochesterFest Triathlon. Of course, I would be walking the 3.1 mile run/walk. The race was delayed with a chance of thunderstorms but all we saw was some light rain and drizzle. Just enough to make the course wet and muddy. Thanks to my buddies from CrossFit Progression for doing the swim and bike portion. I had a blast and even jogged the last 50 meters. It was so fun to be able to cheer the other triathletes through the swim, transition, bike, run, and finish, though I felt naked showing up without my gear bag, helmet and bike. My next triathlon hopefully (depending on my health) will be in August when I can do the whole thing. It will be the USAT National Sprint Championship and I am doing with for Team Breakthrough which raises funds for brain tumor research and patient support. One can donate at http://hope.abta.org/site/TR/TeamBreakthrough/TeamBreakCYO?px=2271412&pg=personal&fr_id=2580 . If I can not do this event I will find one that I can. Every cent makes a difference.  Got home and I was exhausted so I took a nap until I had to get up for the Tri-Rochester Picnic. I made a chipotle salad with chicken and headed out to Oxbow Park. Got to chat a little with my fellow triathletes and ate some good food. Stuffed and tired, I went home and to bed.

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.

reasons

Friday, June 7, 2013

My workout included 45 minutes around the Rochester Athletic Club (RAC) indoor track and 5-10# weight exercises.  Followed by stretching.  I spent the rest of the day reading and resting. Prior to my workout I had an appointment to get my “menopause” shot. The injection decreases the chances that my ovaries will be damaged by the chemo. My scabs are coming off from my incision with hair follicles so they look like little bugs. I would like to show a picture, but I figured that would gross some people out.

Saturday, June 8, 2013

My mother and I headed down to Rockford, IL to her house a 5 hour drive. Spent some time at her house then went to Stockholm Inn’s smorgasbord all you can eat Scandinavian buffet. Stuffed, went back to her house and read some book on brain tumors.

Sunday, June 9, 2013

My day started with Illinois Machine Shed restaurant for breakfast ended up taking ¾ of my meal home.  Then I went back to my mother’s house to do yard work. I spent time trimming bushes, trees, and pulling weeds to the best of my ability. Next I went to my Cousin’s house so my Mom could pick up her phone books which she had picked up from my Mother’s porch. We spent about an hour talking. Went home for a while and then I went to Linos Italian restaurant. Came home and finished the yard work. Started reading another book and finally went to bed.

Monday, June 10, 2013

Went to Stockholm Inn for lunch then headed back to Rochester, MN. When I got back there was a call to arrange the deliver y of my Temodar. So I called and had the delivery arranged for Wednesday.

Tuesday, June 11, 2013

Worked on my blog and went to the RAC for a workout. My workout is standard 45 minute walk on the indoor track and 5-10# weights. Today I added some 1 arm KB swings with a 9# KB. Stretch I keep reading how it is important to exercise while in treatment.  After my workout, I went to Home Depot to pick up some flowers to plant in my garden.

Wednesday, June 12, 2013

Today I went to visit with a pastor at my church which I abandoned when it abandoned me several years back. I consider myself Lutheran but that religion was only my upbringing. I am not Christian anymore. I consider myself agnostic and draw in bits from several different religions. At the meeting I was asked to come to the contemporary service, I guess I will give it a try.  After the meeting with the pastor at church, I went to the RAC for my WOD which was pretty much the same as yesterday. Today my right hamstring was tight for some reason. Went home to my chemo medication, that came via UPS. Then I planted my flowers with the help of my Mom. Stayed up late listening to Coast to Coast AM replays.

Thursday, June 13, 2013

It is time for another massage so I got one today.  Very relaxing. Then off to Target to get a coffee grinder and immersion blender for my Budwig diet. To Noodles for lunch then to the Peoples Co-op to get some food including flax oil, cottage cheese, flax seed,  salad greens and asparagus. Then to the RAC for my workout same old WOD except 50 minute walk today. Back home for some R&R.

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.

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

"Care of being"

“Care of being”

Today I got up and went to the Rochester Area Cancer Survivors’ event. When I heard about the event and signed up I asked, “Is it Ok to go since I just was given the diagnosis yesterday.” Yes, she replied, you are still a cancer survivor. Brought my mother along. After I registered I went to the hand massage table staffed by Mayo volunteers. Got a great hand massage. I found out that they do these massages to patients while they are waiting for radiation treatments.  We sat at a table with three breast cancer survivors. We talked about treatment and life.
After the meal, we did some chair yoga, listened to a talk about self-care from a Mayo clinical nurse specialist, found out who was the youngest, oldest, and youngest survivor, and listened to survivor stories. The talk about self-care was beneficial although long I learned I need to focus on at least one letter of the alphabet, A-Z, each day. For example “H” is for “hug often”.  At the end they gave all survivors a starter tree to plant. The event was motivational, I WILL attend again next year.
After the event, my Mother and I went to Menards to pick up some plants and flowers for my garden. My garden will not be extensive as it was last year, but it will be good.
~dmj

 MP_no stress kid

After going out for breakfast, I spent the day sorting through all the information that I have been given by the nurse and research representative. Too much information and too many decisions to make in a short amount of time. I directed my mother on how to use my  weed remover to remove weeds from my back yard. Thank you Mom. I also had a friend come over and mow my lawn. Gave her $20. She used to mow lawns for her family business so she was a pro. Definitely needed. My lawn looks great and thank you.  Watched TV for a little while although there is nothing worthwhile on TV during Saturday night.

~dmj

MP_obstacles_inside

Workout of day: 15 minutes walking on Rochester Athletic Club’s indoor track. Got to keep moving. Triathlon for Team Breakthrough in August.

~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.