Wednesday, December 17, 2008

Recent pics of the girls . . .

Just wanted to inject my girls into the blog, I think they have been absent too long and they are such a big part of my life . . .

Peanut:











Latte:












Stella:


Reflection . . .

I think I'll go further on reflection on January 1st, but I was just thinking about where I was when I first started this blog. I was a scared, sick girl, worried about her own mortality, whether I would actually live until 2010. Now I am a confident person, 75 pounds (and counting) lighter, a runner, training for a half marathon sometime in 2009. I am still waiting for the surgery to fix the adhesions in my chest from the stimulator, but I know I can accomplish my goals and have gained much in the past year.

I went to a Running Mania (www.runningmania.com) M&G on Monday night, and although, being still overweight and running less than a year, I still feel a little out-of-place and out-of-my-league, I always feel welcome and as I lose weight and improve my running, I start feeling a little more like I 'belong,' maybe more here than anywhere else.

The OC Transpo strike have limited my shopping excursions around town for groceries and x-mas shopping. I have had to buy all my gifts online. My dad's gift is a great hunting vest that has tons of gear pockets from L.L. Bean (www.llbean.com) and my mum's gift is a great triathalon vest and 'yarms' from Robena (www.robena.ca). Alot of her horse riding outfits look similar to these cycling vests but are not made of tech fabric, so I wanted her to try out tops like this in the heat of summer. I think she'll like it.

Groceries are more problematic. Although I take the bus to groceries and a cab back, the traffic is just too much to do these trips around now. Hopefully, during the holidays between x-mas and New Year's, the traffic will have slowed down some to make this possible. I do have enough dog food for another week or two and am still getting my weekly deliveries from Life Organic (www.lifeorganic.ca) so there is always plenty of healthy food in the house. I am walking down to the Shoppers Drug Mart weekly to pick up organic soy milk also (yay!). I do hope this strike is over soon. It is just so disruptive to life in this city right now.

Wednesday, November 26, 2008

Core/Resistance/Strength Programme . . .

A request to post the new core/resistance/strength programme I have been following (thanks Sonia!). It is a combination of some articles that I have read, a lot from one of the trainers at the gym, and some of my own combinations. All I have been using is two 10 pd hand weights, one 10 pound leg weight, a resistance band, and a balance ball. The order is just my own, feel free to put each exercise in any order that suits you. The reps are my own at this time, feel free to start where ever you want. I increase the reps when they get easier to do. The whole program usually takes one hour. I sometimes take two rests in the midst of this, because I find it tough. I also play music loudly so the neighbours can't hear me swear real loud.

Exercise 1: Benchpress with dumbbells is just lying on your back and pushing up the dumbbells to the ceiling at the same time. I have been doing 3 sets of 10 each. I have been using 10 pd weights.













Exercise 2: Sit ups are self-explanatory. I have been doing 3 sets of 25 each.










Exercise 3: Lateral raises are tough! Keep your arms straight and lift up to shoulder height and back down. I have been doing 3 sets of 8 each with the 10 pd weights.








Exercise 4: Leg extensions with leg weights. I sit on a bench or chair and wrap the 10 pound leg weight around my ankle and just raise my lower leg off the ground to straight from the knee. I do 3 sets of 15 on each leg.






Exercise 5: Leg curls with leg weights. I have the leg weight wrapped around my ankle and I just bring my leg up. I have been doing 3 sets of 15.









Exercise 6: Dumbbell raise. Done with my 10 pound weight behind my head, I raise the weight from about the middle of my shoulder blades to above my head and down. I do 3 sets of 15. Supposedly to get rid of the dreaded "bat wings." You can feel the pain right in that area afterwards, so it must be working, right?







Exercise 7: Tricep pull down. I put the resistance band around the door knob and I pull down with the top of my arms facing the ceiling at all times. I do 3 sets of 15.










Exercise 8: Shoulder shrugs. You really feel this in the shoulders and the back. I hold the resistance band above my head and slightly towards the back and pull for 3 sets of 15.










Exercise 9: Dumbell curls. I use my forearm to lift the 10 pound weights up and down for 3 sets of 10. I have weak arms obviously.











Exercise 10: Dumbbell presses. Start with the weights at your shoulders and push up to the ceiling with the weights with straight arms. I do 3 sets of 10 each, but they really hurt.








Exercise 11: Lateral Pull Down. I wrap the resistance band around the door knob and facing the door, pull the resistance band outwards and to the back. I am doing 3 sets of 15 each.









Exercise 12: Push Ups. I cannot do a proper push up yet. So I am using the posture ball to do them until I can. I am presently doing 25.










Exercise 13: You can really feel this one in the back of your legs and your butt. You start in a crouch and you extend the leg with the leg weight to straight out behind you so its even with your back. I am doing 3 sets of 10.








Exercise 14: Lateral leg raises. Stand straight and lift the leg with the leg weight to the side for 3 sets of 10.







Exercise 15: Leg Squeeze. lying on your side, nestle the balance ball in the leg lying on the floor. The top leg sits straight on top of the balance ball. Squeeze the ball between your legs and hold each squeeze for 1 second. 3 sets of 15 each leg.







Exercise 16: Ball crunches. Balance the ball in the small of your back and do slow crunches towards the floor, using the ball to support your back. I am up to 25.










Exercise 17: Lunges with ball. Hook one leg over top the ball, using your abdominals for balance. Then use opposite leg to lunge. I am doing 15 per leg right now.









Exercise 18: Deep lunges 15 each leg.










Exercise 19: The plank. Hold it as long as you can. I am weak and only up to 30 seconds.









Exercise 20: Back extensions. With your abdominals on the ball, I do back extensions on the ball. I am doing 25.








Exercise 21: Oblique Twists. Like sit ups, but on the way up, you twist towards one side. I am doing 25 both sides.












Exercise 22: Tricep Dips. With your hands on a small bench, lift with your arms your body up and down. I am presently doing a modified tricep dip with my legs bent because I can't do a true one yet. I am doing 25 modified ones.







Exercise 23: Lateral Pulls. Pull the resistance band with your arms at the level of your waist. 3 sets of 15.










Exercise 24: Leg Curls 2: With the leg weight on, lift your leg, bending at the knee and keeping the thigh straight. I am doing 3 sets of 15 on each leg.








Monday, November 24, 2008

Scary incident . . .

On Saturday morning (0430) I heard a pounding at the door. The dogs freaked out. I go to the door and see someone through the peephole. I did not open the door. I asked what the person wanted. A woman's voice. I want to use the phone. I said, I'm not opening the door, do you want me to call for help? No, I want you to open the door. I said, I am not opening the door. She pounds on the door harder and harder. I told her again, I am not opening the door. I'm going to call the police. She starts to talk to someone, down the walk around the corner of my house (or that is where her head was looking). She said, are you going to open the door, I am cold. I said I am calling the police. She said, open the door now! I call the police, and let them know what was going on. The police where there within seconds. It actually looked like they were up the street. The woman was gone. I started looking out the windows to see what was going on. I saw the police slowly driving up the street, with one of the patrolmen with a large flashlight, walking along the police car, searching in our driveways and bushes. They went up the opposite way. I then saw another police car drive back toward the way the first police car backwards very fast. I saw the lights and the cars stop. I was hoping that they found the person. I tried to go back to sleep.

I was almost asleep before the light cover in the kitchen fell down. Scared the crap out of me. I tried to go back to sleep again. I almost went back to sleep again, before I heard another pounding at the door. OMG I was scared. The dogs were flipping out again.

I look out the peephole and saw a police officer at the door. I open the door and he comes in to ask me my account of what happened that morning. I told him what I have put here. He wanted to know if I can write all of this out in a statement. Okay. He doesn't tell me what happened. He says it might cloud my statement and that he will tell me afterwards. He wants me to be as detailed as possible. Here I am in my dirty kitchen at 0700 in my pyjamas, with my three dogs jumping all over and shaking - writing out this statement. I can just imagine what the police officer was thinking.

Afterwards, he said the woman was claiming she was sexually assaulted. I said that was odd, that it appeared to me that someone else was with her hiding around the corner. I said I had no proof of that - she could have been talking to herself - but she never asked for help or sounded like she was asking for help. She sounded forceful and angry. I said her demeanor was scary and I am glad I didn't open the door and I am glad the police got there when they did - no matter what her situation was. He said they weren't sure of her story, that they were running down all the leads, and the neighbours gave similar stories - that she kept giving people different excuses to open the door and that someone else said they thought she was with a man who was hiding.

Scary situation. I thought I had put into the back of my head by last night, but I was in the backyard with Stella, waiting for her to go to the bathroom, and I heard a sound from the street. I felt a wave of fear and wanted to go in the house with Stella and lock the door.

Back to running - slowly . . .

After a week of this anemia treatment, I was back to running. Slowly at first, I've been doing 4K every couple of days, with a great core/strengthening/resistance training in between to regain or discover some new muscles. I stepped it up to a 6k run last week and hope to do another one today. I find the core program really tough, but the results are palpable within a week. I feel stronger, my clothes have gotten bigger, and my body fat index has gone down 2% in a month, whereas it used to take a couple of months to go down that far. My waist has shrunk by 1.5 inches in a month alone. No real gains in weight loss though, maybe 2 pounds. It would be nice if the new leaness would translate into a weight number also, but I am satisfied that I am on the right track now. If I could only pick up the running more often now. I feel like I could probably pick that up this week now. The energy is slowly coming back.

Wednesday, November 12, 2008

Anemia sucks . . .

So I got a call from my GP's office saying that I should come in a discuss some blood work abnormalities with him. I ignored the call, because I was busy. I then got a call last week saying that I should come in right away and discuss my blood work. I finally showed up the next day. I have been feeling very drained lately (since before Rattle Me Bones) and even that race I felt so drained that I ran it as a LSD, and still ran it quite slow (1:29 - granny-slow!).

So I knew one of the things they were going to find was anemia - I could feel it and I was quite symptomatic. I would get comments every morning when I came into work - "You look really pale today," "Are you sick? You don't look well," "A little anemic?" As soon as I started feeling the symptoms though, I was starting to pile up on the iron-rich foods, like chickpeas, kidney/black beans, tahini, etc - with citric foods like lemon juice, lime juice, etc. But I kept slowly spiralling down and just lost all energy by two weeks ago.

So, of course they found anemia. I knew my normal levels are anemic or borderline due to long-term anticonvulsant therapy but it was below that level. So I was put on Palafer and given a shot of Epo and to return in three weeks for follow up blood work. I was told to stop running for two weeks to let the therapy take effect.

I had slowed down my running to twice a week due to weekness, and only about 8-10K weekly. I stopped for a week. I don't think I could have run anyways. It took about 5 days to start feeling energy again, and by the 7th day, I went out running and felt great. I even did 1 hour of strength/core training today. I feel so much better.

Thursday, October 30, 2008

How far the little candle throws its beams . . .



I wanted to share this e-mail with everyone reading this blog. Please remember to light a candle on November 1st for little Nayohan. Christy is my friend and this is about her daughter and her family in Moosenee . . . Christy, I hope you don't mind . . .


Sent: Thursday, October 20, 2005 10:18 PM
Subject: Update on Nayohan Cheechoo
Dear Friends,

During this past week Nayohan has recieved her third dose of chemotherapy, she is now able to stand up on her own, and her confidence to walk is returning. Miyopin and I have returned to school and work in Moosonee and Moose Factory. Christy and Nayohan have remained in Toronto at SickKids. Thank you to everyone for rallying and sending positive energy and prayer, being supportive by listening, caring, visiting, giving, and extending your hearts during this overwhelmingly crazy month and a half.

The neurosurgical team at SickKids was able to remove 90% of an immature teratoma tumour in the suprasellar region of our little Nayos's brain. There is no chemotharapy protocol for the treating of the residual cancerous tumour in her hypothalamus-chiasmal region; the oncologist/nuerologists/nuerosurgeons "best educated guess" is a weekly therapy of vinblastine for 10 weeks. After which, we strongly hope the tumour will be gone, or has shrunk, or has stopped growing.

As a result of the physical trauma to her brain Nayohan has lost her innate sensation of thirst and has developed Diabetes Insipidis. Nayohan will be discharged from SickKids in the upcoming weeks, however after much consultation with medical personnel and the social counsellor we have decided that pursuing treatment in Northern Ontario presents its own risks to her health and therefore have opted for Christy and Nayohan to find a condo or apartment in the SickKids proximity in Toronto until Nayohan can return home as our healthy baby girl. We want our Nayohan to continue to recieve the best quality of care and treatment.

Miyopin and I will stay in Moosonee and we will reunite as a family in early December in Toronto when the MRI results are interpreted and to make decisions for the next stage of this journey. Please continue to send positive energy to our little polar bear cub Nayohan especially on November 1st her third birthday. We are truly amazed at the support network that has developed for our little Nayos and are extrememly appreciative and thankful.

Kitchi-Megtch and Thank you all

Don and Miyopin
Christy and Nayohan

Sent: Sunday, November 06, 2005 2:43 PM
Subject: Update November 5, 2005 Nayohan Cheechoo

Dear Friends,

The daily realities of the past two months (Nayohans separation from home, the intrusion of medical strangers, invasive procedures, distasteful medication, discomfort, and pain) have been dramatically reduced. Nayohan was discharged from the hospital last monday, walked that evening, celebrated her third birthday the following day. She now has a temporary sanctuary for her little psyche and soul.

Nayohan and Christy 'stroll' daily to the hospital for chemotherapy, blood-sodium level tests, physio-occupational therapy, and library storytime. Our little polar bear cub continues to amaze people with her resilient spirit, gentle presence, and co-participation and management of her healing and care. Nayos and Miyopin chit-chat on the telephone at bedtime - and I relay email messages and conversation to Christy. We await Nayos unconfirmed December MRI appointment.

We continue to live between the light of hope and the shadow of threat, and are so thankful and honoured for the supportive relationships that are helping to sustain and empower us through this difficult time. Please continue to send the positive energy to melt away the tumour and to heal our Saraphine Nayohan Cheechoo.

Christy can be reached at 416 xxx-xxxx - Unit 564 - 53 McCaul Street TO.

Kitchi Megwetch

Don & Miyopin
Christy & Nayohan

Sent: Saturday, December 10, 2005 9:36 AM
Subject: Good news from a relieved Auntie

Hello,

Following Nayohan Cheechoo's MRI, Don met with the doctors and the therapy is working - the tumour has stopped growing. Nayohan will continue the Vinblastine therapy at the Hospital for Sick Children.

Thank you,
Cassandra Nielsen
on behalf of Don, Christy, Miyopin, and Nayohan


Sent 2006/01/25 10:06

Subject Nayos

Good Morning,

Christy and Nayos arrived safely yesterday at 12:30 pm. You cannot imagine how amazing it was to wake up with the both of them home. Nayos is doing fine both spiritually and physically - she started touching familiar objects in our home, it seemed like she was ensuring this wasn't a dream. I recall a post-surgery meeting with Dr. Taylor inwhich he said "your in for the long haul" referring to her full recovery. At that time, I had no idea what he was referring to when he said that. As each month passes I realize his truth. Thank you again - we're just hoping we don't see SICKKIDS until the MRI.
Sincerely, Don Cheechoo


Sent: Wednesday, February 22, 2006 10:35 PM
Subject: Nayohan in Moosonee

Hello, Wachay, Bonjour,

Today, Nayohan received her first chemotherapy administered at Weenebayko Hospital, Moose Factory. Nayos and I returned from Toronto on February 14, our second attempt, to have treatment based here; our first attempt, January 24-30th was terminated due to a neutropenic fever and were medi-evacuated back to Toronto Sick Children's Hospital for two weeks.

Triumph - today was a success! Next goals: keep Nayohan healthy to receive her weekly treatments in Moose Factory and March 21st MRI in Toronto.

We are grateful for and trustful of our phenomenal health care team (Sick Kids, Weenebayko, Homecare, and the Clinic) that enables us, despite the fear of the unknown, to look towards Nayohan's future with optimism.

We are thankful to our ever evolving support network of family and friends and are fortunate that Nayohan and Miyopin are cared and enriched by so many people. I am proud that my daughters' characters have enhanced and developed friendships during our journey.

We are privileged to love our polar bear cubs and we acknowledge the daily miracle of our resilient family's continued existence. Some minutes of the day seem overwhelming and I am unable to feel anything but sorrow and anxiety. Being home, sharing love and fun with Don and my girls, and watching Nayohan's spirit heal has begun to re-energize my soul.

All of us have a common goal: treating, caring, and nurturing Nayohan to be the joyful little girl she is meant to be and the graciously beautiful and intelligent woman she will become. Thank you - Meegweetch - Merci and please keep sending the positive energy!

'Everybody loves Nayohan'

Christy, Don, Miyopin, Nayohan

p.s. I've attached 4 files: picture of the girls, letter from J.K.Rowling, and Nayo's bravery beads





Sent: Monday, April 03, 2006 9:26 AM
Subject: sunshine in Moosonee


Hello, Wachay, Bonjour, Saludos, Ni hoa,

Nayohan's journey from last summer in the sunshine cruising the Moose River and playing on the sand bars, to the frightening diagnosis of cancer and diabetes insipidus, to coping through hospitalization and starting treatment in Toronto, and continued healing in Moosonee, and onward to survival, growth, and rewarding life has been, is, and will be, fraught with numerous uncertainties.

However, Nayohan's progress over the past seven months is amazing and tremendous. The March 21st MRI showed a tumour that has neither grown nor shrunk and she will continue with the year-course of vinblastin chemotherapy based at home. We are more proficient at managing diabetes insipidus and the medical world, and most importantly, she is surviving and thriving in her own home with Miyopin, her parents, and her polar bears.

Love, knowledge, and action continue to be our most valuable tools to restore her heart, spirit, and health. We have rearranged some priorities, expectations, and schedules to accommodate our present challenge but our daughters' dreams and possibilities continue to be our long-term goals. Hope, the ultimate optimism, enables us to envision a cured, healthy, whole child, and a family returned to predictable normalcy.

We also hope for short-term achievable goals.

Daily, Nayohan understands that medicines, medical procedures, afternoon naps, good meals, and wearing slippers keep her 'blood strong' to receive treatment and to be an intact family unit in Moosonee.

Weekly, there is tremendous relief after each dose of vinblastin has been successfully administered and blood test results are acceptable for all. Currently, chemotherapy includes helicopter flights as the ice road to the hospital is too treacherous to traverse at this time of year!

Spring sunshine has arrived and soon we will cruise the Moose River: sand castles, kites, picnics, and fishing. Miyopin wants to learn to ride a bicycle without training wheels, play on a soccer team again, and return to swim lessons. She loves reading, science, drawing, and dancing, and was junior kindergarten student-of-the-month last February. She is a phenomenal caring big-sister. Nayohan counts to ten, sings her ABCs and rhymes, writes the letter 'N', dresses herself, and emulates and teases her sister. She is a resilient cutie-pie polar bear.

In three months time we will have reviewed the results of Nayohan's psychological assessment and endocrinological tests conducted when we were last at Sick Children's Hospital and be returning to Toronto for another MRI to ensure the effectiveness of the chemotherapy.

The initial shock of diagnosis has not passed and the anxiety of Nayos' compromised health is always present, but with the combined efforts of family and friends, medical professionals and technology, and Spirit we are coping and focusing on the present day and future possibilities. Please continue to send your encouraging and optimistic energy to our little polar bear, Saraphine Nayohan Karly, and to our family.

Kitchi Megwetch,
Nayohan and Miyopin
Don and Christy

Attached files: pictures of the girls and Nayohan's bravery beads.






Sent: Friday, May 12, 2006 6:20 PM
Subject: the girls

Both Miyopin and Nayohan have had colds. When Nayohan has a fever she has to have blood work done to see if her blood is "strong enough." Gratefully, her results have been great so you don't have to go to Toronto. Its been pretty stressful but we'll get through this. Last Wednesday she had her 30th dose of chemo. - 22 to go. Miyopin played her first soccer game of the season last night and she has a loose tooth. We will be heading to Toronto for Nayohan's June 1st MRI. Hope everyone is enjoying the Spring weather and birds,

Christy




Sent: Friday, May 19, 2006 9:16 AM
Subject: rainy day

Attached are photos of the girls this morning before Miyopin headed to school. Miyopin played soccer last evening - superstar. Chemotherapy was cancelled this past week - Nayohan's blood was too weak. The past two weeks have been a bit stressful due to colds and fevers but she is a strong little girl! We are planning to plant some lupin seeds this weekend and maybe go out in the boat if the weather/health are both stable. Plus, we have to post a letter to our cousins in Australia! And Aunti Caushie may come over to play playdough! Rainy day today.




Sent: Tuesday, May 23, 2006 10:15 AM
Subject: indulge me...

I love taking pictures of the girls and then sending the photos on...

It SNOWed all weekend, and once the long weekend is over, we now have beautiful weather!

Sent: Monday, May 29, 2006 7:31 PM
Subject: planes, trains, automobiles = TO's MRI

We all leave tomorrow morning for Toronto and June 1st MRI - Nayos and I are flying, Don and Miyopin are taking the train and driving the rest of the way. We are staying at the Delta Chelsea. Nayos and I return on Sunday - Don and Miyopin return on Monday. It will be a very busy few days! Please send extra positive energy on Thursday - we want the tumour GONE, but will also be elated if it continued not to grow. I will send un update once we return. Thank you all so much for being an extremely supportive network to Nayos and my family. Everything will work out and "everybody loves Nayos",

Christy

Sent: Monday, June 05, 2006 7:44 PM
Subject: Fw: planes, trains, automobiles = TO's MRI

Just a really quick note... with GREAT news.
This evening, our family is reuinted in our home. Thursday's MRI scan showed a stable tumour (it has not grown) and it may have even shrunk! Nayohan's diabetes insipidus has been stable during all the treatments/procedures/travelling.

Optimism is the faith that leads to achievement. Nothing can be done without hope or confidence - Helen Keller

So, we are in "hiding" from OncologyWorld for another 10 to 12 weeks. Nayohan's 33rd administration of chemo is this Wednesday and I am hoping that we will have the i-stat monitor in our home by the end of the month.

Thank you for sending optimism our way. We are doing well and I hope everyone is enjoying the summer weather. I am planning to send an update email this weekend with all the details.

Christy

Sent: Thursday, June 15, 2006 11:07 AM
Subject: a first!

Miyopin's first permanent tooth has arrived and the tooth fairy came last night!

Sent: Monday, June 19, 2006 5:54 PM
Subject: invisibility cloak

You may not be able to notice... but Nayohan is wearing her invisibility cloak. While in Toronto, Nayohan would frequently be overwhelmed by strangers so she would put on the poncho Nancy Lucas gave her. And magically, no one could see her, ha ha ha!

Sent: Friday, June 23, 2006 11:01 AM
Subject: tiara and butterflies

Nayohan wears her tiara for the majority of the day; why not?
When we were in Toronto last March Miyopin saw the yellow dress in a store. Earlier this month when we were back at SickKids, she ran into the store and said "I've been dreaming of you, butterfly dress!" I had to buy it.

We are hoping for sunny warm weather this weekend so we can take Nayohan back to BearPaw Island and the sandbars to fly kites and play in the sand. She and I spent many moments, while she was healing away from home, reminiscing and planning our summer fun. Oh let there be sunshine!... and while I am begging for beautiful weather... Oh let there be no blackflies and mosquitoes!

Sent: Monday, June 26, 2006 3:38 PM
Subject: Harry Potter fans!

Another letter from JKRowling! Last April, I sent her a thank-you letter and enclosed pictures of the girls. We are thrilled!

Christy and the Girls

p.s. I've attached files of the original letter, too.



Sent: Thursday, August 24, 2006 7:37 PM
Subject: 1st & 43rd

first day of school
43rd chemotherapy

Sent: Monday, September 11, 2006 4:03 PM
Subject: Fw: sunshine in Moosonee

Here is a copy of the updates I send to our e-support-community. May I include you on our list? I believe that the more souls generating and sending positive energy, light, and prayers to Nayohan the more resilient and sheltered she will be by Spirit and the Great Mystery. Positive energy and polar bear power,

Christy

Sent: Saturday, September 30, 2006 3:21 PM
Subject: bin-nas-din nee-bish (falling golden leaves) in Toronto

Hello - Wachay,

Spring/Summer 2006 in Moosonee was wonderful and miraculous: witnessing the dramatic Spring break-up of the Moose River, nurturing a pumpkin patch and herb garden, hosting family and friends, building sand castles, and flying kites. When we were not enjoying the weather and wildlife Miyopin attended Science Camp and swim lessons while Nayohan continued her weekly chemotherapy, diabetes insipidus management, and healed.

We acknowledged the one-year of challenges our brave Nayohan surpassed with a Labour Day river-picnic, watching the birds before their migration south, and reviewing her thick medical chart. The water level was high enabling us to explore and reflected on the first autumn golden leaves, beautiful Miyopin started school, Don's summer holidays from work were over, and adorable Nayohan and I prepared for our September 21st Hospital for Sick Children appointment/MRI.

Unfortunately, this recent MRI showed the residual brain tumour to have progressed, aggressively; it has grown faster during the past three months than it had during Nayohan's first three years of life. More tests have revealed extensive spinal metastasis. These devastating results are a shocking and massive blow to our spirits: we have asked, received, and spent so much energy reinforcing the belief that the intracranial tumour would remain stable while on the vinblastin therapy as it had since October 2005. We were so confident that we would return home on September 24th. Plans have changed.

Don has taken a leave from work and each evening, at the hotel, Miyopin is embraced by the parent who is not at the hospital hugging Nayohan. We are a family in Toronto, confident that our polar bear cub is soothed by our adoring love and is receiving excellent medical care during the next few weeks. Nayohan is an amazing soul and together we have accomplished so much during the past year. Thank you. I can not explain the overwhelming emotions we are presently experiencing.

Please continue to send energy-love-prayers to our cherished daughters.

Christy and Don

Saraphine Nayohan Karly Cheechoo's Brave Journey with Cancer



November 1, 2002 -Born Weeneebayko General Hospital, Moose Factory, Ontario during the first winter storm of the season

September 3, 2005 - Medi-evacuated to Timmins; Admitted to SickKids after being diagnosed with a brain tumour & moderate hydrocephalus

September 4 - Right frontal endoscopy biopsy

September 12 - Surgical resection. Cancerous immature teratoma of the suprasellar region of the brain; Central diabetes insipidus with impaired thirst mechanism

September 30 - Insertion of central line & lumbar puncture

October 4 - First administration of chemotherapy

November 1 - Discharged as outpatient

December 9 - MRI: Residual tumour neither grew nor shrunk

December 27 - Admitted to SickKids with neutropenic fever

January 24, 2006 - Returned home to heal & continue to receive chemotherapy

January 30 - February 6 - Medi-evacuated to SickKids with neutropenic fever

February 22 - First administration of chemotherapy at Weeneebayko Health Ahtuskaywim

March 21 & June 1 - MRI: Residual tumour continues to neither grow nor shrink

August 5 - 40th chemotherapy

September 20 - 47th chemotherapy

September 21 - MRI: Residual tumour has progressed aggressively

September 26 - MRI: Extensive spinal metastasis

October 3 - First palliative radiation on back

October 4, 2006 - Nayohan's body passed away at 6am during a lightening storm


Fallen Angel

by Robbie Robertson and Martin Page

Are you out there Can you hear me Can you see me in the dark I don't believe it's all for nothing It's not just written in the sand Sometimes I thought you felt too much And you crossed into the shadowland And the river was overflowing And the sky was fiery red You gotta play the hand that's dealt ya That's what the old man always said Fallen Angel Casts a shadow up against the sun If my eyes could see The spirit of the chosen one In my dream the pipes were playing In my dream I lost a friend Come down Gabriel and blow your horn 'Cause some day we will meet again Fallen Angel Casts a shadow up against the sun If my eyes could see The spirit of the chosen one All the tears All the rage All the blues in the night If my eyes could see You kneeling in the silver light Fallin', fallin', fallin' down Fallin', fallin' down Fallin', fallin', fallin' down Fallin', fallin' down Fallen Angel Casts a shadow up against the sun If my eyes could see The spirit of the chosen one All the tears All the rage All the blues in the night If my eyes could see You kneeling in the silver light If you're out there can you touch me Can you see me I don't know If you're out there can you reach me Lay a flower in the snow

Sent: Wednesday, October 04, 2006 9:44 PM
Subject: to weep is to make less the depth of grief

There is sobbing to autumn, and it is the weeping of loss: Nayohan passed away this morning. Don, Miyopin, and myself were with her during her body's last breaths. Until she lost consciousness this morning she knew and could tell all who loved her; she was a whole child - a happy child. Nayohan was born during a storm and that is why we named her the Cree for "the four winds". Nayohan passed during a lightening/thunderstorm.

We will start our meandering northern journey home with her ashes this weekend. The enormity of what has happened to our family is to hold it at a distance until we can begin to grasp its awful truth, little by little, piece by piece. We are a strong family with a large positive support group - thank you.

"One who has journeyed in a strange land cannot return unchanged." - C.S. Lewis

"He who lacks time to mourn, lacks time to mend." - William Shakespeare

Miyopin and I have started a blanket box for our little Nayohan that includes her favorite denim bush hat, her wabusk polar bear toy, her quilts and pillows, tiara, bracelets, bravery necklace, and her JK Rowling correspondences. I would appreciate anyone who has read of Nayohan's brave life to send a card/post card/note (tangible to Miyopin) symbolizing the international support network that encouraged her bravery, please:

Saraphine Nayohan Karly Cheechoo
Box 38
Moosonee, ON P0L 1Y0

During the next few days we are grieving at the Delta Chelsea in Toronto and then our trip with my cell phone (xxx)xxx-xxxx. Every evening, I always check our home answering machine at (xxx)xxx-xxxx.

Thank you for all you energy and spirit,

Miyopin and Nayohan, Don and Christy

Sent: Wednesday, October 11, 2006 9:44 PM
Subject: the presence of her absence is everywhere

"There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go."

My heart aches - we miss our Nayos so much. Yesterday, the community held a heart-felt memorial service which inlcuded hymns, prayers, sharing, a drum song, and concluded with a feast. Thank you to everyone who has cared and shared our grief.

The following is the eulogy Carman Tozer delivered and a poem John Cheechoo wrote. I have also attached photos of Nayohan's bravery beads and her footprint.


Poem by John Cheechoo


Nayohan

A strong wind came upon us all one early winter̢۪s day
Its sacred breath delivered a soul for all to cherish and love
That special wind lifted our spirits filled with joy and pride
A new beginning with the first soft blanket of white down

The warm breath of that wind carried news mile upon mile
It sang through the trees as it spread throughout the land
Its breath opened our doors and gently rushed into our hearts
Here it stays to care for our fallen leaves, troubles and dreams

Delivered by love, delivered by peace and all things good
We are blessed to receive such an angel to bring us to ease
In all our moments of inner turmoil we must never forget
The sacred wind breathes upon us love, goodwill, and hope

Forever We Love, Forever We Live


Eulogy

Saraphine Nayohan Karly Cheechoo
November 1st, 2002 - October 4, 2006

The clock of life is wound but once,
And no man has the power to tell
Just when the hands will stop
At a late or early hour.
Now is the only time you own:
Live, love, toil with a will,
Place no faith in tomorrow;
For the clock may then be still.

Welcome, it is with deep regret that I am addressing you today - we have all gathered here to pay our respects to a wonderful, brave and innocent young girl whose clock was stopped with her life barely having a chance to begin.

Saraphine Nayohan Karly Cheechoo, daughter of Don and Christy and little sister to Miyopin passed away on Wednesday, October 4th after a yearlong battle with cancer.

Nayohan was born on November 1, 2002 at Weeneebayko General Hospital, during the first winter storm of the season. She was named 'Four Winds'.
I would like to share a teaching from Uncle James and Aunt Daisy:

The Cree name given to Nayohan is important. Her name and spirit will always exist.

Chee-wha-din - North Wind is a powerful wind, geese like flying in this wind, a long time ago this was a good time to hunt.

Moo-shaw-hadin - East Wind, this wind blows from far inland and out into the deep waters of the bay. The land, animals are calm and the geese don't fly in this wind.

Sha-wyn-nhen - South Wind, geese fly good, wind helps them to glide and it brings Neebin - summer and everything begins to grow again.

Naga-bah-hen - West Wind, geese like flying and the tide is high and rolls in like waves in this wind. Naga-bah-hen-noo-datch - the West long time ago our people believed that this was the place of our ancestors and loved ones who have passed on.

Nayohan leaves a gift for each of you. One of the many gifts is her name.

Nayohan's life started at the end of the autumn season and her first three years were spent growing uniquely just like each individual leaf develops on a birch or aspen tree.

Nayohan grew up doing all of the things that young children love to do, things that we all take for granted:

She loved playing house and playing doctor.

She loved the outdoors, boating and sandy beaches in the warm summer sun. Skidooing and sliding in the chill of winter, warming up and having hot dogs by a campfire.

She loved spagetti and sauce 'gettis' she called them. The smell of good food cooking would have her rubbing her belly and saying 'mmm'. She learned to ask for seconds even before she could talk by pointing at her sister's plate of food.

She loved playing princess and wearing her tiara, attending balls with Miyopin and dancing in the living room. She would dance and turn like a leaf in the breeze - whirling in slow fluttering circles.

She loved 'knock - knock' jokes and soccer. Nayohan version of soccer was being carried instead of running after the ball herself - enjoying the bouncy ride instead.

She loved animals - Polar Bears, most of all.

She loved laughing and had one of the warmest smiles.

She especially loved her family - her big sister and role model, Miyopin, her Dad and her Mom.

In Autumn are the days of colour, where leaves take on beautiful hues of red, gold and orange - they charge the mind and spirit with colour and warmth against the coming white and cold. Each leaf seeming to say 'enjoy me while you can.'

Nayohan's brillant glow of courage and resilence have touched us all during her brave journey with cancer.

During the September 2005 holiday weekend Nayohan, with symptoms of hydrocephalus, was medi-evacuated from Weeneebayko General Hospital in Moose Factory to the Toronto Hospital for Sick Children, via Timmins General Hospital. A September 4th MRI confirmed a massive brain tumour which had grown throughout her three years of life. On September 12th, the phenomenal neurosurgical team was able to remove 90% of a golf-ball sized tumor from of Nayohan's brain.
As a result of the physical trauma to her brain Nayohan developed a very rare, permanent, and life-threatening condition of central diabetes insipidus. The day-to-day management of this condition was essential in maintaining her health.
A year-long regimen of chemotherapy was prescribed. On October 4, 2005 Nayohan received her first administration of chemotherapy. On November 1, she was discharged as outpatient from Sick Kids. Her first MRI was optimistic,on December 9th, the residual tumour neither grew nor shrunk.

On January 24, 2006. a very happy day, Nayohan returned home to heal & continue to receive chemotherapy.

She received her first administration of chemotherapy at Weeneebayko Health Ahtuskaywim on Febraury 22, 2006.

The subsequent chemotherapy treatments and mangement of the Diabetes Insipidus appeared to have all in control. The March 21st & June 1st MRIs show that the residual tumour continued to neither grow nor shrink.

Life for Nayohan was all about growth, healing and loving. Her little leaf during this time was held in suspension, not quite sure if it was time to change.

On September 21st, the shocking news that the MRI show that the residual tumour had progressed aggressively and follow up testing revealed extensive spinal metastasis.

Autumn comes without warning at a time when the lushness of life may seem to be beginning to wane, even though it seems there is endless time and the warmth of life must go on forever.

On October 3rd Nayohan had her frist palliative radiation on her back.

On October 4th, at 6 am Nayohan's body passed away during a lightening storm. By her side her family.

At the very top of a tree a magnificent crimson single leaf danced and turned in a sudden breeze, then separated from the branch. It whirled in slow fluttering circles down to be the little crimson flag on the solid green of a hillside. It has responded like other leaves, that, whatever the combination of circumstances, waning sunlight had hastened it's change. The brilliant leaf will turn to duff and soon will be part of the black humas underneath, lending its richness to the earth and colour for autumns of the future.

Nayohan may the wind take you home..

Love knows no limit to its endurance,
No end to its trust, no fading of its hope;
It can outlast anything.
Love still stands when all else has fallen

Sent: Wednesday, November 01, 2006 5:20 PM
Subject: how far the little candle throws its beams

Miyopin had a wonderful Halloween yesterday. She had two costumes (princess by day - bat by night) and returned from a chilly trick'or'treat-ing with a bagful of sugar. Yahoo!

There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love. Washington Irving

The heart ache of Nayohan's physical absence is like the infinite transforming sky; today's windstorm coincides with Nayohan's 4th birthday. We are lighting candles this evening symbolic of her presence in our hearts and to commemorate her courageous life-fire. Please dedicate a lit candle, too - many small flames together make for a greater brilliance. We are learning that bereavement is an individualized and slow process; we will weather the storms as a family by the illuminated memories of our little polar bear and by the warmth of everyone who has extended their hearts. Thank you.

I believe that imagination is stronger than knowledge - myth is more potent than history - dreams are more powerful than facts - hope always triumphs over experience - laughter is the cure for grief - love is stronger than death. Robert Fulghum

We are doing okay,

Christy

Sent: Wednesday, October 31, 2007 7:22 PM
Subject: Nayohan Cheechoo


We are lighting candles the evening of
November 1st
to symbolize the presence of
Saraphine Nayohan Karly Cheechoo
in our hearts and to commemorate her courageous life-fire.
Please dedicate a lit candle, also.
Many small flames together make for a greater brilliance.

November 1, 2002 - October 4, 2006

Sent: Thursday, November 01, 2007 8:45 AM
Subject: Amazing Moosonee

Wachay

I spoke to Bad Willie a week prior to his death - I said to him

" if there is no miracle for you - and you find that there's something on the other side - find my daughter and ensure that she is good - give me a sign on her birthday - she was born in a storm and her name represents the wind - I need to know."

He said that he understood and that he would.

We spoke to each other almost every week since he was diagnosed with cancer and throughout his ordeal with chemotherapy. He started to understand many of the emotions and behaviours that my family displayed during Nayohan's illness. He said he got courage and strength from Nayohan's own bravery, strength, and, in a surprising way, her wisdom.

The last time we spoke I think he knew it would be last, as he was sincere that he would make every effort to find Nayos and let me know that she was good.

Nayohan's birthday is today and there's a wind storm with blowing snow.

Coincidence or confirmation?

Sent: Monday, November 05, 2007 8:23 AM
Subject: Fw: Amazing Moosonee

I wanted to share with you this email Don sent this to his siblings this morning. His eldest brother died of cancer last month.

Wind warning for: Moosonee - Fort Albany
Issued at 5:09 AM EDT THURSDAY 1 NOVEMBER 2007
..STRONG WINDS THIS MORNING.


Sent: Thursday, October 30th, 2008.
Subject: how far the little candle throws its beams

Nayohan Cheechoo

We are lighting candles the evening of
November 1st
to symbolize the presence of
Saraphine Nayohan Karly
in our hearts and to commemorate her
courageous life-fire.
Please dedicate a lit candle, also.
Many small flames together make for
a greater brillance.

November 1, 2002 - October 4, 2006

My heart aches for our little Nayohan.


Thursday, October 23, 2008

No energy, no mojo . . . .

I've been feeling very tired this week and I don't know why. It feels like all the blood has been drained from my body. The only way I can get any energy is taking small naps, drinking large amounts of coffee, etc. I could stay in bed all day if I allowed myself. I had a seizure early Monday morning and I just haven't bounced back from it. I called in sick for the first four hours of my shift on Monday, but I made up for it by staying for 4 hours afterwards. Today, it was too much. I just decided to stay here all day and try and rest. I haven't been able to run since Sunday, but I'm going to try tonight if I get enough rest.

Thursday, October 16, 2008

Nearly forgot about this little slap in the face . . .

I got this letter from my neurosurgeon (actually, a form letter with just my name written in) just before Thanksgiving. It made me laugh and steam at the same time. I guess all I can do is laugh. If anyone doesn't want to go back and read the past year, I'll give a short summary:

I have a vagus nerve stimulator implanted in my chest to help lessen my epileptic seizures. The battery in my old one went dead last year and I needed this surgeon to replace the whole unit. I waited 5 whole months from when my neurologist told the surgeon about it, until it was done. It was an "urgent" surgery (ha ha ha). The surgery was even cancelled, with no apparent notice, the night before in October 2007. My seizures got significantly more frequent and serious as I waited for surgery. I ended up not being able to leave my house for 3 months due to seizure frequency. I finally had it done in December of 2007. The surgery ended up being botched in some way (ha ha ha), and the stimulator ripped through the bottom of the "pocket" in my chest, leading to the wires into my brain PULLING when I move my neck. It needed to be fixed to prevent either wire breakage (dangerous) or nerve damage (dangerous). I signed the consent in March 2008 (3 months after the initial surgery) and to this date, I am still waiting with not a WORD from the surgeon's office.

Did I also mention that when I saw the surgeon for the second time, that I should just "get used to it," and "not move my neck?" He also said that he had seen worse "disfigurements." I wasn't even worried about the "disfigurement." I was worried about the warnings my neurologist told me (he is the expert in this technology) about the vagus nerve being severed or damaged by the tension and the wire breaking and possibly cutting the carotid or jugular. That's what I was worried about. I wasn't even worried about the constant pain I have over the stimulator site as it moves loose in my chest, ripping scar tissue with movement, and the swelling. All I was worried about was the dangerous stuff. The surgeon didn't want to do the surgery initially, until I told him I trust my neurologist and I am going with HIS recommendation.

I ended up telling my neurologist on my last visit that I was getting a little frustrated with my life being on hold for a year and a half (the initial wait for the replacement and this wait for the repair). I said that maybe everyone just assumes that, as an epileptic, the surgeon must assume that I am not working and can afford to wait endlessly. I also made a polite phone call to the office (got the answering machine) stating that I would like some news on a potential date or timeline, as I have a career and would like to make future plans.

I ended up getting this letter after the inquiry through my neurologist and my personal inquiry:

(dated June 2008, but received in September 2008)

Dear Carrie (Carrie written in pen, the rest a form letter),

We are writing to let you know, that we fully understand your frustration and disappointment at the length of time you have been on our elective waiting list. In addition to the ongoing pain and discomfort that you are enduring, we realize that waiting for a surgery date also results in changing personal arrangements made with the workplace, home environment, relatives, etc.

We also hope that you will understand, that the specialty of Neurosurgery is one that deals with many life and limb threatening emergencies i.e. brain hemorrhages, tumours, strokes, aneurysms, etc. Our speciality is very unpredicatable, and obviously, patients with more serious illnesses, must get priority in the operating room. Also, our speciality has insufficient access to operating room time. This shortage has impacted all of the neurosurgeons practicing in Ontario.

Despite these problems, the elective waiting list for neurosurgery is considerably less than that for other specialities i.e. orthopaedics, where the wait for hip and knee replacements is over 12 months in most centres.

We continue to monitor our waiting list every week, and have not forgotten your case. We attempt to be fair in evaluating patient priorities, and you can be reassured, that we will contact you directly when a date is available. Thank you for your ongoing patience.

Yours very truly,

[surgeon]

[secretary]

I love how this letter makes it sound like I am getting a mole removed and I should just wait like a good little girl. I am very, very lucky my employer has kept me on, not doing direct patient care for over a year now.

Sooooo frustrating. I hope he doesn't decide to do this after January (when I start my 1/2 marathon training). That would really, really, suck.

Thanksgiving at the fam's farm . . .

I had a very nice visit at my parent's house for Thanksgiving. I didn't get any running in, but got to go hiking/running/walking on the bush trails. I ate way too much (what everyone does during Thanksgiving) and enjoyed visiting everyone. All in all, it was a peaceful interlude outside of Ottawa. Tomorrow, I get back to the grind!

Saturday, October 4, 2008

Week up to now . . .

I've been having an up and down week. The beginning of the week started with alot of pain in the chest around the incision area and a growth of swelling around it. It was probably some adhesions and scar tissue ripping. It was really achy and the sharp pains came back, and now the pulling is back in full force on the wire up my neck. Makes me focus back on that!

My running has been going really well. I've been slowly increasing my distance and my pace has slowly increased. Hard work and consistency really pays off! On the down side, my right IT band along my right thigh down to my knee is aching. I have been doing some stretching and self massage, and hopefully it will loosen up. I've been reading how I screwed it up and am following the advice I am reading from running magazines and on www.runningmania.com.

The middle of the week, I had my first day of more than one seizure in a day in a long time. I had two seizures on Wednesday. Oh well, I can't expect everything to turn up. I will not let that get me down. My successes in running have negated that.

I hope to improve again next week. I only work Monday and Tuesday since I am taking a week off for Thanksgiving starting on Wednesday.

Saturday, September 27, 2008

Race Report from Running Mania . . .

Here is my race report from www.runningmania.com about my first race:

My first race of the Army Race 5K will be difficult to top. I was impressed with the pomp and ceremony, surrounded by soldiers - and the inspiring injured soldiers along the way. I was actually talking to a couple about their injuries near Pretoria Bridge (a nurse is always interested). I was in awe! I have lived in Ottawa for 10 years now, but it was the first time I actually saw a Mountie dressed up in the traditional uniform (and I live across the street from two Mounties), first time I saw those guards with the big, tall fur hats. The combat helicopters buzzed overhead just before the race start was cool too. I saw all the people looking out of the windows of the Lord Elgin Hotel. I bet they were thinking that they paid all that money for a room and they get "invaded." Oh, back to me. It was cold this morning! I had a hard time giving up my big brown Roots sweatshirt, in favour of my racing wear only. I found all the advice given to me by everyone here of great use. My previous goal for this race was 40:00, but I revised it when I decided last week I didn't need to do 10:1s anymore, and was going to straight run it with a new goal of 45:00. The race itself was very relaxing. I took my time, took it all in, talked with a few people along the way, just had fun. I saw a friend I work with and his wife on the QE Driveway and Elgin and he told me of his new position on my floor as I ran by. Great! I started speeding up past the 3K (or was it 4K?) mark when you could hear the finish line. I was so pumped. I got to pass my nemesis (this racewalker who was really clocking it) and my watch time and chip time were 45:39. The race was everything I thought it could be and so much more! The finish area was great. There was a line up of soldiers giving the runners their medal, and I just walked up to the hottest one to get mine (of course). I met up with another nurse I was chatting up with before the race. It was her first race too and she started running the same time as I did in May and started the LTR class at the same time. She did really well also, finishing about 5 minutes ahead of me. Both of us didn't get one of those post-race blankets, because we figured it was warm enough now. DUMB idea. Should have grabbed one of those blankies. I got cold waiting for my bag at the bag check. I was so happy to see my brown Roots sweatshirt! I got to meet Kiza, Nick, Crash, Strider, Mrs Strider! It was fun to watch the 1/2 marathon with them. I saw most of the Maniacs cross the finish line! Notes to self: My next race, I'm not going to underball myself so much by starting so far to the back. I spent the first half of the race passing families walking 4 to 5 abreast and were making you pass them wide. My fault though, they started at the back themselves to have a relaxing walk or jog. Racewalkers book it fast! Don't like them clocking me, but they were walking faster than I was running! I loved talking to people along the way though. There were alot of runners that this was their first race and they had just started running in the spring like me. All in all, goals met. Ran in the time I wanted with no walking breaks, absorbed the atmosphere, had a great deal of fun! My parents in North Bay were very proud and I have received tons of messages on Facebook. I will be going to bed early tonite though. I'm not used to waking up so early and I have to actually go to work tomorrow. I will be wearing my medal and my raceshirt under my lab coat though!!

Friday, September 26, 2008

Busy, busy week . . .

It has been a busy (and tiring) week in the wonderful world of Carrieland. The Army Run was Sunday. I had a really bad migraine on Monday - not sure if it was caused by just being tired, stressed, dehydrated, change in weather, all of the above. Worked Tuesday, off Wednesday, worked Thursday and Friday. All 12 hour shifts. Just. Wiped. Out.

The up side is I have achieved my weekly milage goal so far to date. I have started a program to build up some more distance and endurance in my running and therefore to build a stronger base to hopefully, be able to build a 1/2 marathon program starting in January. I don't know where my upcoming surgery is going to fit into this. That is the wildcard, since I have no idea on the date. I tried to phone the neurosurgeon's office again this week to have some idea on a planned date, week, month, year? for this, but no one has called me back yet. I wish I could get some resolution so I can move on. Some days the pain over the stimulator is barely noticeable, but other days (like today) the pain just shoots in your chest like you've been shot. The stimulator was so swollen under my shirt today that you could obviously see it through my black t-shirt at work and it looked like I had a third tit. Attractive.

Not really going through this third surgery for the attractiveness factor. Far from it. The incision is going to be nasty and messy. I am totally aware of this and been told several times. I just want to not worry about snapping wires in my neck and not feeling this underlying throbbing and sharp pain all the time. Obviously with a fast turn-around and back on my feet in a week (I wish!).

Sunday, September 21, 2008

Post Army Run . . .

I did it! I did my first 5K race. There was alot of people and alot of pomp. It was really well put together. I ran the whole thing without stopping and followed my plan of starting out slow and gaining speed with each kilometer. I think I started back too far from the start line though, I had to pass alot of walkers walking 4 or 5 across, alot of walkers, strollers, etc. Next time, I think I'll start farther ahead in the back.

Got to meet alot of Maniacs these past couple of days and they all are so supportive and fun. I stayed and watched most of the 1/2 marathon afterwards, but got so tired, I just had to go home for a nap. I had got up so early this morning and the whole thing was so exciting. I had a 2 hour cat nap and am still quite wiped. I'm going to bed early and to work tomorrow!

At the start line . . .

On this FRIGID morning, I am making my way to the start line of the Army Run 5K. I had a. REAL hard time giving up my big Roots sweatshirt hoodie today! I don't see anyone I know yet, but I'm sure I will soon!
Sent on the TELUS Mobility network with BlackBerry

Thursday, September 18, 2008

4 days and counting until Army Run . . .

I am really looking forward to the Army Run (www.armyrun.ca). I have decided, this being my first race, I am going to go and have a good time and not push myself. I'm just going to finish the 5K and take pictures along the way. My parents will love it!

I was at work today and this shift was indicative on how incredibly lucky I am to be me. I know reading this blog has shown that I have seen my share of unfortunate medical incidents, but I am basically a very content person and I live a relatively peaceful life here at home with a comfortable roof over my head, money to buy whatever I want, and surround myself with three dogs that love me totally unconditionally. My parents are very supportive and I have lots of friends. Some co-workers are not living such a peaceful life. Their personal life has actually changed their personality so much that they do not have a moment of peace and it is so persuasive that it invades the relationships she forms at work. How sad. I hope she finds peace from her personal situation soon and comes to a solution because she is such a special person.

I am also so incredibly lucky to have found Running Mania (www.runningmania.com) and found a great bunch of supportive friends that have given great advice and support on running and some other things. Running can be taken as a great motivator and metaphor for life and this new lifestyle for me has given me such great strength to deal with my health. I have had many people address this new life force I have been projecting even though my health this past year has not been quite the best. I feel I do have the strength now to wait for a long time for my upcoming surgery with alot of positive thoughts from what I have learnt from running.

I am planning on starting a 10K program after the Army Run and continue on that until the end of December, when I hope to start a half marathon plan (knock-on-wood). Right now, I am really enjoying my 8-9K runs the most and I think I will do well on this plan.

Sunday, August 31, 2008

Disappointment in myself (the worse kind) . . .

I have the long weekend off. I was supposed to run at least 5K on Saturday. I put it off because my legs ache from two 12-hour shifts on Thursday and Friday. I think I need new orthotics in my work shoes. So, I figured I could run Sunday and Monday - take advantage of the long weekend.

Sunday comes (today) and I don't run. I have no excuse. I'm not busy, overtly tired, hurt, aching, injuries, no seizures, no headache, weather is fine - no excuse. I am disappointed in myself. I thought I was better than that.

Really, if you get down to the core of the disappointment, I am afraid that once it happens once, it will keep happening until I stop running all together. I love running. I love the freedom it gives me. I love the feeling it gives me. I love the sense of accomplishment it gives me. I love the knowledge that I can do anything - after a life of not being able to do so much due to epilepsy. How can I give all that up?

Tomorrow is another day. I have to just chalk this couple of days up to rest days or "mental health days" and just go back to it. How can I not? I owe it to myself to keep going.

Monday, August 25, 2008

My long run Sunday and suffering for it Monday . . .

I had an amazing run on Sunday. I did 9K! I couldn't believe how far I ran. The weather started out so nice. The temperature was nice, there was a nice breeze, very little humidity. I brought enough water (a 1/2 L water bottle and a 1/2 L of water with 1/4 Gatorade). I didn't start feeling uncomfortable until about halfway, when I started noticing it wasn't that nice, comfortable temperature anymore and the humidity became a little uncomfortable. The run along the river was also in the sun the whole way. My legs started cramping and stiffening up with about 2K left. I might have veered off and made it only a 7K run, but I stuck it in there and completed the run. The last 2K, I started doing 5:1's and then 2:1's the last 1K. When I got home, the temperature was 26 degrees with it feeling like 32 degrees with the humidity. I rested the rest of the day by playing with the dogs in the backyard.

Monday morning, about 2 am, I woke up feeling really jumpy and nauseous. I had a panic attack in which I think the focus of it was the upcoming 5K race. I think I was panicking about coming in last or whatever. Really, does anyone really realize what the focus of a bad dream/panic attack? I don't. Anyways, I stayed up for a little bit, playing a boring computer card game on a Palm until I felt really tired (5 minutes). When I woke up in the morning, I had a migraine and the nausea was worse. I took a Maxalt and let the dogs out, called in sick at work and went back to bed (after the dogs came back in). When I woke back up in 3 hours, the migraine was starting to leave, but the nausea was still hanging around. My legs were all wobbly. I have been trying to relax and rest all day.

Saturday, August 23, 2008

Shortfalls and short falls . . .

A brief note of the past week. The "shortfall" has been my runs this week. I have been running as planned this week, but there has been a small, but disappointing shortfall each day. My tempo run was lacklustre, having not timed one lap due to a mistake, then letting myself psychologically because of that first mistake. Then, my hill repeats were lacklustre also. It was hot, but not unbearably so, and I cut myself back by one hill repeat when I knew I had it in me to do it. I have been just genuinely tired this past week. Today, it is really hot and I can't let myself down again.

The other "short fall" was at the beginning of the week, on Monday, when I tripped over Stella outside on the brick patio and cut my nose, and really bruised up my knees. I now look like I've been in a fight. Luckily, my sunglasses cover the slightly black eye and cut on the bridge of the nose when they are on.

Monday, August 18, 2008

LSD and other non-drugs . . .

My first LSD (long, slow distance) was yesterday. I did a 8K run around the perimeter of my neighbourhood. It went really well. I didn't start feeling it until I ran out of water with about 2K left. It was a hot day and very sunny yesterday and since I had not been on a LSD as of yet, I misjudged my water supply. I guess I either need a bigger water bottle or a double water bottle holder.

I felt so good afterwards. I had a lot of trepidation about signing up for that 10K run in October, but now I know I can do it. My pace throughout that 8K was not much slower than my 5K pace. I'm pretty sure I am better at long distances than shorter distances.

Stella's operation is tomorrow (getting fixed!) and I hope that goes well without any glitches. Peanut did really well and was running around in the afternoon after her surgery. Latte was really drugged up, she was allergic to the sutures, kept licking them and the wound partially opened up - which made healing slow. I hope Stella does better.

Friday, August 15, 2008

Trying on old clothes and other dramas . . .

So last night before bed, I decided to try on some of the old clothes I've been lugging around that I have been to fat to wear. I couldn't believe that I can now get into the "dream jeans" that I have been carrying around for 15 years that I bought at the Gap (when the Gap was cool), although I can't do up the zipper all the way. I must say I that was the skinniest I had been since high school when I wore those jeans. I loved those jeans so much that I had 3 pairs of the same kind (I still have all three). I put them on, and even though I feel so good to get them on, I don't think I could ever wear them outside the house because of the cut of them. They were from the early 90's! The dream jeans. The dream shattered. But the main thing is that I can get them on.

I also tried on an expensive black dress that I bought several years ago for a party that I fit into. I think it was one of the first nephrology dinners. Way too big. I could roll up a towel and put it into the bust of this dress. I have come really far. I think I have lost 5 dress sizes to this point.

Today I have to go shopping and I will be stopping at a couple of clothing stores also because some of the clothes I wear on a daily basis are becoming way to big for me. All my underwear I am swimming in. I have had to throw out several bras and I am waiting to get new ones to throw out the rest. I need to buy new workpants so I can throw out the rest, and I am going to get some new T-shirts to wear to work since some of the ones I am wearing are like mini dresses. Even some of the running bras I bought in the spring are starting to give me some slack and I will have to invest in some more (expensive!)

It is a fantastic (but expensive) thing to happen when you shrink out of all your clothes.

Thursday, August 14, 2008

Today's Run . . .

I did my first hill repeats today up Smyth Road hill three times. It was intense. What a good workout. I could see why they build up strength and endurance. They also play with you psychologically by making you feel you can do anything! A couple of months back, I would quit or slow down with any sign that a run would be hard, but there was not even a thought of doing that today! What a rush. Also, when you can do hill repeats on this hill, there are no other obstacles that stand in your way.
Sent on the TELUS Mobility network with BlackBerry

Burnt myself on hot peppers . . . yum . . .


So I had got these organic hot peppers from Life Organic as part of my delivery (http://www.lifeorganic.ca/), and I had tried to roast them for supper this past weekend whole and they just were too painful to eat. Today, for lunch, I took one (raw) and got rid of the seeds and inner spine inside and cut it up small to put in my salad. After I cut it up, I rubbed my nose and neck. Well now, those areas are BURNING. I thought it was just hot, but the area on my neck is hot, red and raised. Lovely. The nose is just mildly red. Now I can honestly say hot peppers do burn your skin. They really tasted good too.

Tuesday, August 12, 2008

Up'ed the bar again . . .

I'm playing with fire, I've uped the bar again. Not only have I now registered for the Rattle Me Bones 10K, I've also registered for the Ottawa Race Weekend Half Marathon next spring. Now I have to keep this going! Not that I was planning to quit - I'm just keeping the intensity up all throughout the winter. I will have to ask advice on how to reliably train during the winter in Ottawa (especially after all the snow last winter). Should I have to start pricing treadmills with hill climbing programs? I really like running outside - I really find the treadmill is quite boring.

I took 2 weeks off this week and next week. Stella will have her "fix" done on the 19th of August and I would like to be home to do all the running around and making sure she recovers well. I also want to up my training again to start to increase my speed for the Army Run 5K and start increasing my distance for the 10K. The weather looks to be ideal for the next 2 weeks, so it looks like I picked the right time.

Tuesday, August 5, 2008

Raising the bar . . .


My Learn To Run web course through the Running Room (http://www.runningroom.com/) is almost complete and I have been doing really, really well. I am doing about 15K a week and I've actually signed up to do a 10K run October 28th. I think it is doable. I signed up for the Running Room 10K training program, but will just follow this with my present running after the LTR course is finished so I can just complete the 10K race. If I can do this, I am supergirl! Now I am worried that if my surgery is booked within this time window, I'm going to not be able to finish 10K. Oh well, it is understandable - I'll just do the 5K race that day. I'm sure the race officials will understand.

I haven't had a seizure since the second week of July and I am quite happy about that. If I maintain this, I will be back to normal (two seizures a month). My neck and the stimulator are still really sore, especially when a patient went into flash pulmonary edema and I had to tear his shirt off to access his chest (oww - did my neck and chest feel that). Since then, the swelling has been bad and I am starting to feel the wire pull on my neck again. It can feel really uncomfortable sometimes if I think about it - but I try not to allow myself to think about it - there is too much things to do without wallowing about that. I will not allow myself to go to that place again where I feel sorry for myself and feel like a sickly little bird. I have come so far in 6 months!

Saturday, July 26, 2008

Thoughts before sleeping . . .

I wrote the following two nights ago before falling asleep . . .

My mind is racing with thoughts of the past and would love to blog all of this but my internet connection has been down all day (because of rain - damn Bell). I inadvertently skipped my anti convulsant drug dose in the morning and I always become a little more creative when I skip a dose or when my stimulator was off - I will have to remember to tell the neuro that. I think it is my right brain trying to exert itself while there is a lapse in security (ha ha).

I am remembering Mr. Montagunes (sp?), who lived across the street on Franklin Street in North Bay. He had a large basset hound named Barney who used to mournfully bark in the night. I loved his bark. Mr. Montagunes had a concentration camp tattoo on his arm and his fingers were cut off by the Nazis. He was always so friendly to us kids in the neighbourhood. He used to pretend he was biting off his finger, then show us the finger stumps.

I remember Dad telling me of playing hockey in Memphis or Nashville and seeing a gang of white guys chasing down a black guy to beat him up. The hockey team was made up of all Canadian guys and went out to defend the black guy because it wasn't a fair fight.

I don't know why I wrote the previous lines before falling asleep, but I did and here they are. I guess these thoughts seemed important that night.

Sunday, July 20, 2008

A really good run yesterday . . .

It was really hot and humid. I was going to try and run a whole 5 K yesterday and I was running the walk 1/run 4 min training programme that I am on this week. I did it without quitting and I felt so great afterwards. I did it without even thinking it was hard at all. I felt (and feel) like I can do anything. I know now that I can do that 5 K race in September at a reasonable time if I keep improving at the pace I am doing now. I did that 5 K yesterday in 45 minutes and a slow pace and I can just see me doing a 5K race in under 40 minutes no problem. I can't believe how far I have come in such a relatively short period of time. My waist, chest, tummy and legs are shrinking. It is fantastic!

Friday, July 11, 2008

The worlds funniest commercial

Ok, last one. Just had to add this one too.

Banned Commercial - Condoms

Another one I found while looking for the previous Pepsi commercial.

Diet Pepsi - Mony Mony

Funniest thing on tv when it first was aired! Too bad they only showed it a couple of times . . .

That famous Pepsi commercial discussed earlier this year on this blog . . .

http://www.youtube.com/watch?v=2Xq8xtRCnXY&feature=related

Bump in the road and irresponsible Desjardins Pharmacy . . . .

I have been doing well so far until this recent bump in the road. Let me explain.

The running has been going so well. I have improved so much in such a short time. My seizures are back to normal (2x a month has always been my baseline - have never been really less than that since high school, no matter what treatment has been tried) and I am thinking better and better. I am following the Running Room's program (www.runningroom.com) to a T without any problems. I only had one short run day because the weather was so hot and humid (on Monday, the temperature was 32 and humidex was 42, so I only did 1.5 km that day). I was disappointed, but not too much because the weather was so extreme.

The latest problem has been the pharmacy getting my prescription ready on time. I have had supply problems before at Desjardins Pharmacy in Ottawa here before. They don't like to keep my drugs on supply very much, probably due to how expensive they are and the very few people on them. They have quite often been late by one day, or they don't like me ordering my prescription too early. But this time, they have gone too far.

I ordered my script over the phone on Sunday. My last doses were going to be Tuesday and I assumed that this would give them enough time to get that crap together. I was told that they would have the delivery here at the house Monday evening. Great. Perfect. I was present here at the house.

No delivery on Monday at all, but I was not panicking at this time, because I had Tuesday morning's dose here and was off work on Tuesday to get my delivery. No delivery on Tuesday, and when I called on Tuesday evening, there was no answer.

Wednesday, I had to call in sick and had the first seizure in almost 2 weeks. I called the pharmacy x 3 that day, and was told a few things:

Claim 1. Was told that the driver said he tried to deliver twice to my house, but I wasn't there. BS, I said. I had been here all day and didn't leave for anywhere.

Claim 2. One of the drugs, Trileptal, was expected to be delivered that afternoon, and would be sent out as soon as it came in. I mentioned that the claims by the driver must have been BS, since there wasn't a delivery to be delivered if the drug wasn't even at the pharmacy.

Claim 3. The delivery was out with the driver and should be here in the late afternoon or early evening.

Call 4 couldn't be completed after the delivery didn't arrive because the place was closed.

On Thursday, I was feeling quite rough. I had 2 more seizures and was quite shaky and hadn't slept for two nights. I called first thing in the morning and was assured that the delivery was being sent out first thing in the morning and should arrive sometime in the morning. I was told that if my drugs hadn't arrived, I was to call back at noon.

At 1 pm, I called back and was told that the driver had the bag and was out delivering them between 12 and 6. I asked what happened to first thing in the morning, and wasn't answered. I told the lady that I had missed a few doses and this isn't good for epileptics. She assured me the delivery would be here. Today was my running day and I was in no condition to go running. I was even uncomfortable going outside with the dogs in the backyard. I didn't want to miss the delivery or miss the knock at the door. I was quite discouraged about missing my running day also because this is the first day I have missed a training day. I did arm weights instead inside.

Friday, I called first thing in the morning stating that this was quite poor business practice and I demanded my delivery first thing in the morning. I took the name down of the person on the phone and the pharmacist on duty and told them I was reporting this problem to the Canadian Pharmacy Association and was going to cc: the email to them also. An hour later, I got a call back from the driver asking me if I was going to be home to receive the delivery. I told him I have been here the whole 4 days and he hadn't made any attempt to deliver this whole week. He ignored me and said he was going to be here within the hour.

He delivered the meds finally at 10 am. It was a new guy and I signed the receipt and he made me PRINT my name on the sheet also. I think he is also in crap, and rightly so.

After all this, and missing two work days and having 3 seizures and not sleeping two nights (slept last night after 2 mg of lorazepam) and missing a training day, I will be calling back the pharmacy and letting them know how disappointed I am. I have also been researching other pharmacies that my work drug plan works with so I don't have to pay initially for the prescription. The Walmart in the Train Yards is the other option, and although I HATE going to Walmart, I am going to transfer my prescriptions to this drug store so I don't have to go through this injustice anymore.

I am hoping the drugs kick in and will be going running after lunch. I am going to try and make up the training day lost and get back on track.

PS - I have also been using this sick time to try and find a family doctor, as my neurologist wants me to do. Made a few phone calls and have a few leads, but won't be able to actually see a GP until at least September (waiting lists). Oh well.