New York.

I was really excited to get to New York. It felt entirely different than any of the last times I visited. It felt like the start of my journey, like the start of all of these important goals that I have to finish for Meghan. I didn't at all feel ready for any of it.
When I took my first opportunity to talk about Meghan, or what I am doing because of her, I got choked up and scared. I encountered a problem I was unprepared for. Being scared to talk about Meghan. It's scary admitting to people, yourself, and the world that your wife is gone.
I didn't want any of it to be real. I didn't want to be traveling because of Meghan, I didn't want to be trying to finish her goals, deciding how many countries to go to alone, which places to volunteer at, which places it was ok to have fun in. I didn't want to be doing anything without her.
I forced myself to talk to a stranger at the bar that night about the the trip and I remember seeing pity in his eyes. It was an awful feeling knowing he was looking at me like I was one of "those" people. I was forced into this club of people who have felt tragedy. I am now one of those people that is referred to as 'poor' before my name in conversation. I don't want that. I want no part of it. Partly because it means that Meghan isn't with me anymore and partly because I hate pity. Meghan disliked people apologizing for what she was going through.
It's ok to empathize with her. It's ok to feel bad for her and her family. But please don't let that horrible incident define us. It is absolutely not what defined Meghan. Her cancer was the least important part of her life. How she lived it is what's important. Meghan dying is not what defines me. It is our life together thats more important, it's who she made me and how I am living now because of her influence.
New York is where it was decided that I would narrow down the volunteer project to five countries. Five, because Meghan wanted to live in five different countries. Each segment will last roughly three months and in between volunteer destinations I'll be visiting the countries in between to get to the twenty-three countries Meghan had left to visit.
New York was an eye-opener. I had no idea what I was in for. Being alone is scary, talking about why you're alone is scary. Trying to convince people to not feel bad for you and believe in what you're doing is scary. This is a lot bigger of a deal than I thought and I continue to find strength knowing it is what Meghan would have wanted.









- Adam

Live On The Top

When Meghan was re-diagnosed earlier this year, her nurse told her something that I think is a great way of dealing with difficult subjects. She said "We know you have cancer. We know what it will ultimately do to you.  We know it's there and we're going to put it in the closet and move on. Its not going anywhere but its not doing anyone any good dwelling on it. Continue living as much and as well as you can and we'll deal with things as they come"
 
Being sad is the same way. Just being sad is nothing close to what Meghan went through but it still has negative effects on your outlook and day to day life. There are plenty of days I don't want to get out bed or get dressed or go see people and so on. We know the sadness is there. I know it will always be part of my life to feel horrible for not having Meghan here but being sad doesn't accomplish things. We have to put the sadness
somewhere else, know it's there but not let it have any control. Deal with it when it comes but know you will keep going.
 
Every time Meghan got negative feedback about her condition, I felt like I was being pummeled by a giant with a lead pipe. I know it was worse for Meghan. Somehow though, and you all know this too, she found a way to get back up and keep moving forward. She felt that what she was dealing with was important enough to share and document and she never let that depression beat her. Ever. She spent a lot of her time and effort making others feel better about what she was going through because she was incredibly strong, and wanted to show others that dealing with cancer in a positive way is completely possible.  She injected that spirit into so many of us and her words won't stop helping and inspiring others as long as I'm around.  
 
Meghan's legacy is one of hope, strength, battle, independence and will-power in the most pure and intense form I've yet seen. She had the worst luck I know of and she still
managed to get the things she wanted, every time. She fought tooth and nail until she had the answer she was after. Her hope with her writing was that anyone could derive a similar strength from her words and continue on in spite of their circumstances. To prove that no matter what, and even in death, people can still succeed with their goals.
 
This continues to be most confusing period in my life but I know that Meghan set me on a path that I won't veer from until I'm finished. Because of her. Because of her determination, her drive, her spirit, because she deserves everything she ever wanted to do or see. My hope, in addition to sharing her story, is to spread this message; when a community unites, so, so much can get accomplished.
 
There is a massive network of friends and friends of friends that can help the less fortunate in every corner of the earth.  We can all make a difference and an impact, at home or abroad. Because of loved ones or in spite of the bad hand you've been dealt. Being depressed, hurt or upset doesn't get things done. Wipe the blood off your face, bandage your wounds, get up, do better and do more, every time.
-Adam

Progress

It's hard for me to define if I'm making any progress or not. Meetings fall through, decisions aren't being made and I just feel tired all the time. I can't figure out a linear path for this project. It's
like every thought represents a line in my head and not single one is going in the same direction as another. Everything is infinitely more confusing than a month ago. I want to make this awesome for her. I want her to be proud. I want her to always be remembered and held in high regard.

I've decided to narrow down my approach to the service project. I'm
going to go to five places and spend three months at each location. I feel like
I'll be able to make more of an impact and better connections if I'm there for a substantial period of time. I've narrowed the countries/ areas down to Australia, India, Central/South America, Tanzania/ Kenya/ Rwanda area and Poland. I need to get in touch with actual schools, orphanages or farms, any project in these countries that needs assistance. Im looking to start putting the dates together and I need your help with finding people
that I can help. If you have connections in these countries, put me in touch with an actual person. I'd like to flesh these out so I can figure out a trip budget and more precise timeline for the trip.

Lastly, I'm worried that people aren't talking because they're afraid to. They don't know the "right" thing to say so they don't say anything. I need your help and communication. There is no right thing to say or feel, at all. None of this is right and it will never be right or just or OK that Meghan is gone. There will never be a right way to go about grieving for someone, no correct timeline, no correct magic word to make pain go away.

The five or ten or eighty steps to happiness or completion or whatever are complete garbage. You do things that make you feel better. You enjoy the good times when they happen and remember what it is about Meghan that makes you happy or feel stronger or better. Please, talk. Communicate. It doesn't matter
what you say as long as you are honest.

-Adam

Not Deciding is Deciding

It's hard doing things that are fun without Meghan being a part of them.
For every pleasurable part of this weekend, I wished she was here. Progress
being made for the service project is satisfying but I still feel
guilty for enjoying myself. I know that there is no right or wrong way
to grieve nor no correct length of time one needs to be upset with the
loss. When is it ok to have fun? When is it ok to be active?

We always wanted to live in a big city and New York would've blown
Meghan's mind. She would have had an absolute blast exploring the city and
finding new restaurants. A group of our friends and myself spent the entire day yesterday walking around and I imagined how she would have reacted to the amazing houses, the street fairs, noises, the park and gardens, as well as her place in our
conversations. Which person would she have chosen to talk to? What would they have talked about?

It was really hard yesterday. It definitely feels great to get
away but I'm half afraid I'll abandon dealing with losing Meghan and
try to pretend that I'm not sad or deal with the fact that the best part of my life is now gone. Meghan always made me deal with things. She always forced me
to talk about difficult stuff and wouldn't let me off the hook until I
had resolved the issue verbally, mentally and/or physically.

I'm really glad that what I'm doing is about Meghan and that I'm forced
to talk about her and deal with her loss every time I explain to
someone new what my trip is about. In a way it's almost like Meghan is
again forcing me to deal with this. She won't let me bottle all of
this up and slink off into a hermit-like oblivion. She wants me to
make something of myself. She wants me to be social and enjoy new
things and to actually deal with losing her. I will never ever
understand how any of this was fair to her or how she was so positive
and comforting for others. I will never forget her, her spirit or her
fight. She wants me to move forward. She wants me to decide to do
meaningful things and then to follow through and finish them.

The Impact of Volunteering

"Everybody can be great because everybody can serve."

—Martin Luther King, Jr.


My goal is to pass along Meghans spirit, I want those who haven't yet been touched by her story to understand what she means to this world. I want to inspire others to pick up where their passed loved ones left off. Finish things set out for them. Move forward. Make an impact. 
I don't think that anyone would argue the benefits of volunteer service both for the volunteer and the recipient of that service. It strengthens community, there are health benefits for the individual and it leaves a lasting impact on the lives of those involved. 

In a report released by United Healthcare and Volunteer Match, they found that;

-More than 68% of those who volunteered in the past year report that volunteering made them feel physically healthier.
-29% of volunteers who suffer from a chronic condition say that volunteering has helped them manage their chronic illness.
-89% of volunteers agree that volunteering improved their sense of well-being.
-73% of volunteers feel that volunteering lowered their stress levels.
-92% of volunteers agree that volunteering enriches their sense of purpose in life.
-More than three-quarters of volunteers who participate in service activities through work report that they feel better about their employer because of the employer’s involvement in their volunteer activities.

Volunteer work is an excellent method of making positive gains for yourself both physically and mentally. You become part of something. There are tangible results to your work. The intangible results are the things you learn about yourself and your community. You Improve yourself.

Meghan had very clear and distinct goals that were all are centered around self improvement and learning through service. Whether it was forcing herself in front of her peers to teach, move to a completely foreign place or get to a certain level or aerobic health, Meghan was hell-bent on self-improvement. Which is something I think everyone needs a dose of now and again. Raw determination to get what you want and where you want to be.  

I was fortunate to have more than a dose (7:30 wake up calls to go to the gym may qualify as unfortunate or an overdose,) and plan to do all I can with that massive(and often forced) injection of sheer will-power. I am going to travel to 23 countries because Meghan would have. I am going to run a half marathon because Meghan would have. I am going to volunteer in an Indian orphanage because Meghan would have. I am going to inspire you to get what you want because Meghan would have. She already has for so many. 
-Adam

Community

The word "community" is derived from the Old French communité which is derived from the Latin communitas (cum, "with/together" + munus, "gift"), a broad term for fellowship or organized society.[2]

I find this to be profound. with/ together and gift being combined into one word. It has been amazing to see this in action. We are all part of something powerful and far reaching and my hope is that no one loses sight of this. Meghan and I felt very blessed by the outpouring of love, support and solidarity. And Meghan very much wanted to pay it back in some way. It was very important for her to keep a record of everything she received from everyone. She wanted everyone to know how much it all meant to her. You all are wonderful. It's wonderful that we are all part of this. I want to carry this same spirit of gratefulness and global community with me every where I go, every step of the way. I want all of you to be part of this with me, to see the impact being made and to make connections of your own. Thank you so much for your help thus far. Don't just help me. Help everyone you can in need. It comes back to you one way or another.
-Adam

Press Release

many thanks to julie campbell, we now have an official press release that can be downloaded: Here
or i can email it, get at me: Here
download, change the date to a current one and forward to your local paper, tv station, radio station, blog etc.
-Adam

Travel Map

View For The Love of Meghan in a larger map

-Adam

list of needs

These are the things that I need in order to get this project going. I'll be updating these when things are fulfilled(again, email - adam.r.warner@gmail.com - me if you want to take care of one of these, just so i can keep it all straight or send me a personal message on facebook):

1) 32gb Ipad for travel writing/ updating blogs and uploading/ storing photos.
2) Handheld digital HD video camera
3) YOUR connections to media outlets. I'd love to spread the word to local newspapers, tv, online magazines, documentary filmmakers....anyone that can spread information fast. speaking engagements, meetings with your mp or mpps, reporters etc.
4) Business cards(something simple stating my purpose, why Im doing what Im doing and the links to Meghan's FB page and blog and my information.
5) Ipad Camera connection kit.
6) Pages app for the Ipad (can be gifted through itunes)
7) Numbers app for the Ipad (can be gifted through itunes)
8) Train tickets for the cross-canada trip (Sept)
9) Volunteer opportunities in every major city along the way
10) Mifi unit with service for Canada (just to borrow for the summer or so?)
11) Help setting up a charity and or non-profit org for donations
12) Destination Ideas - I'll be posting a very, very general map that i want all of your input to fill in and connect the dots.
13) a personal trainer. I suck at running, have a lot of it to do in the near future, and don't know where to start. Also, I'm really out of shape.
-Adam

Live Harder

I think all of us are obviously reeling with the loss of Meghan. There is an emptiness left by her that I know Ill never fill. I don’t think Meghan and I met for her benefit, we met for mine. I learned so much from her in the past 3 years, invaluable lessons that speak volumes about who she is and what she meant to those around her.
Her family was without question the most important part of her life. I've never met a girl more proud of who her father is and what he has done in his life. The close friendship and trust she shares with her mother is something most of us will only be able to wish for. And the utmost level of respect and adoration she has for her brother makes me want to be a better man in order to be included in those ranks. She holds every single member of her family in the highest regards. She is so, so immensely proud to be part of the Bradley/ Baker clan. Just the same, I’ve never been more proud to be a Warner, and so, so proud that Meghan is a Warner, than I am of these past two years while going through this journey with Meghan.
And that’s the first and most important lesson Meghan taught me. Your family and friends are the best things you have, treasure them. When there is trouble you circle the wagons, stay near and do everything you can to fight. And that’s the second. You fight. You fight for the things you want, the things that are important to you and you never, ever give up.
And that’s the third. Live. Some of us aren’t given a lot of time here, so live and make an impact. Do important things and affect people positively.
And the last is ongoing. Learn. Never stop learning. There are lessons taught in everything, everywhere through everyone. Don’t let them fall on deaf ears. Be connected and in the words of one of Meghan’s best friends; “Cherish every fucking moment.”

The light that burns twice as bright burns for half as long - and you have
burned so very, very brightly.

In Meghan’s honour I’m going to finish everything on her list(s). Not just the most recent list, not just the one she wrote back in September, the ongoing list she had with those close to her. The things she wants to do that are wild and far off. Many have asked how to help and this is how you can. If there is something special between you and Meghan or something you know she wants to do tell me. If you want to be part of that trip tell me. I plan on traveling from place to place, meeting up with her friends and family and providing some sort of volunteer service in each place for her. If you have travel connections, airline miles you want to donate, money you don’t know what to do with or simply a couch to sleep on let me know. Read through her lists on her blog and if there is something that speaks to you let me know. Meghan inspired us all in many different ways and want to hear about all of them. So.... here we go- (Thursday, September 10, 2009)
Life Goals...
1) To hold a PhD, I'm not too picky on what it is going to be in. The way I am going though, I think it's bound to be nursing.
2) To learn another language. I've got a head start on Korean and French, I just need to get motivated enough to do it.
3) To master at least one of the following musical instruments - cornet, cello, piano, or guitar.
4) To live in at least 5 different countries - So far I've only got Canada and Korea. I'm assuming that I will have United States in the near future (preferably San Fran, DC, Portland and Maine). I'm thinking somewhere in Europe and in South America?
5) To run a half marathon. I've a lot of training to do though, seeing as the 5km I ran today was far from easy.
6) Spend at least 100 hours volunteering. (Note*** So far I'm up to 40h :))
7) Master the following- sewing, knitting & crocheting (Note*** on my way with knitting/sewing, kinda sorta.)
8) Become part owner of a Bed & Breakfast (with Adam.)
9) Travel to 30 countries. I'm at 7 now.
10) Read at least 12 books a year until I die (Textbooks NOT included).
11) Complete 'The Weekend to End Breast Cancer' 60km walk in Toronto.
12) Own a little cottage by a lake.
New Goals-
1) Take the train across Canada.
2) Go to an NHL game (don't really care where, I just want to go.)
3) Make Peter take me (and friends) to a Blue Jays game... I don't really have any interest in baseball, but I think it would be fun.
4) Go to the Symphony.
5) Get married (hahaha, um... no pressure Adam.)
6) Go to Canada's Wonderland with my friends/family.
7) Take a road trip back to Maine.
8) Go snowshoeing.
9) Go ice-skating on the Rideau Canal.
10) Get my darn tooth fixed.
11) Get some darn shiny nice new glasses.
12) I've always wanted to go to Ireland with my father... it's been a dream of mine since I was just a little girl. My father has been, and he loved it. I would love to share this with him while I still can. I don't think I'm ready to let go of this dream yet.
13) See the northern lights.
14) Travel to India to volunteer in orphanages.
-Adam

There will be visitation between 2-4 PM and 7-9 PM on Thursday, April 29 at Needham-Jay Funeral Home in Petrolia: 4059 Petrolia Lane, Petrolia, Canada


All are also welcome at the funeral at St. Philip's Parish (415 King Street) in Petrolia at 11 AM, Friday April 30.


In lieu of flowers, she wanted donations made to Kelly Shires Breast Cancer Foundation 1-877-436-6467.

It’s with a heavy and broken heart that I write this. Meghan passed away this morning, every bit as independent, feisty, and without pain.

Thank you all for your immense love, and support. We very much appreciate you.

Dang'ol Bambalance

So last night I was watching a movie with Adam when I  felt something kind of strange in my front right side....and by strange I mean a severe, sharp stabbing pain in my abdomen. Within a minute or two, said pain got to the point where it was almost impossible to take anything but shallow breaths and the pain was constant no matter the position. It was at this point that I had Adam call my mother so we could go the E.R. in Petrolia. As much as I HATE taking night trips to the hospital because everything takes so long as they have to bring in the on call staff, I knew this was an exception to my rule. I guess being able to breathe kind of negates all my previous hangups. We left home at about 10pm and I was admitted almost immediately. The usual routine followed, with bloodwork, blood pressure, temp., and lots of other poking and prodding. The on call physician Dr. Daniels was concerned that I might have a blood clot in my lung, or a bleed in my liver. Obviously starting treatment for either could cause some pretty serious repercussions (like... death) so he sent me to Sarnia by ambulance to have a CT of my abdomen and chest. The ambulance drivers were super nice and even took it kinda slow for me as every bump and turn was causing really severe pain, despite the Percocet I had been given at the hospital. When the results finally made it back to Petrolia (after I did), Dr. Daniels was able to rule out both the bleed and clot. Instead, it appeared that my gallbladder was inflamed and I had something that may or may not be pneumonia.  He prescribed some intravenous antibiotics for the possible gallbladder infection (administered once a day until friday) and morphine to make the infection, movement, breathing and life in general more tolerable. 

I was released from the hospital this morning (because I didn't want to be admitted for the next 4 days) and have been hanging out on my bed, pretty much motionless since I got home. The morphine helps, but I only wanted enough to take the edge off, but not get rid of the pain completely, so I don't damage myself more. and last but not least; with yet another round of the antibiotics I will unfortunately have to push back my chemo another week.

The thing on my upper arm is a soft-set(?) to administer the morphine (they use a funny little device to set it just under the skin, kind of like the top of a click pen) and the wolverine claw is the IV for the antibiotics that I get to keep until friday. 

I am a little disappointed with the London Cancer Clinic for not being a little more helpful with the whole situation. They have a doctor on call who is supposed there to advise other doctors in ERs across Ontario. I understand that being on call sucks but helping out a doctor dealing with a very sick patient IS YOUR JOB. Maybe try being a little more helpful. Thanks.

Minor setback

The start of round two of my chemotherapy has been postponed by a week. The weekend before it was to begin, I developed a rather painful tooth infection. I went to see my palliative doctor on Monday and he started me on 7 days of antibiotics in an attempt to clear it up.
Tuesday I went to the London Regional Cancer Clinic and spoke with Dr. Vandenburg. Following our rather lengthy conversation regarding all of the side effects that I have been experiencing, we decided that it would be best to give my body an extra week to recover. This would allow the antibiotics more time to run their course before knocking my immune system out again. As relieved as I was to hear this, the news was also a little discouraging. Mentally, it's tough to hear that your body isn't strong enough to handle the treatments. It's tough knowing that the cancer also has an extra "recovery" week before it gets hit with the chemo again. I just want to kick it's butt and having to wait around is disheartening.

Dr. Vandenburg was also toying around with the idea of reducing my dose of chemo, as I seem to be having a number of bothersome side effects. One of the reasons I respect Dr. Vandenburg as a doctor is that he actually listens his patients input. When I told him why I didn't want my dose reduced, he actually listened to me. It's nice to be able to have some input on your treatment. I know the first round of chemo was the hardest for me last time. I ended up in the hospital for 5 or 6 days after my first round. Although I had some sort of problem after all but 1 round, none of them compared to the first time. I'm hoping that this chemo will be the same. I mean... really I'm hoping that I won't have any problems with the next two rounds at all, fingers crossed.

I don't know what I was expecting coming in, but I now know that even the so called more gentle chemotherapy can be a jerk. I suppose I should have expected this, knowing that the point of chemotherapy is to kill cells in your body. I mean... anything with a job like that is bound to have some not so nice consequences. Although it didn't make my hair fall out (my radiation did), it's still wreaked havoc on my body.  During the first round, my skin became incredibly dry and sensitive, to the point where if someone touched me, it was uncomfortable. My hands and feet were and still are very dry, and discoloured. The balls of my feet started to develop uncomfortable red patches, at which point I was told to stay off them. My mouth sores, along with my infected tooth and constant stomach discomfort made/make eating a rather unpleasant experience. The puffiness and weepiness (is that even a word?) of my eyes and the fact that my nose runs every time I try to eat anything just further added to my annoyance. Finally... chemo wears you the heck out. I've never been one to nap, but for about 5 days in a row I had at least 1 nap a day.

On the bright side, I do believe that I am getting some of the strength back in my legs. Going up and down stairs is getting easier. My Palliative doctor also suggested that I start riding my bike, which is awesome. This past week, Adam brought me one of his bikes to ride :) It's beautiful...I'm just waiting for the weather to warm up again before I get out there. I've also started sleeping through the night again. I had almost forgotten how wonderful it is to get a good nights sleep. I'm so happy to be off the Dexamethasone! Oh... one final present the Dex left me with was another case of thrush. Jerk. Medication for this has been added into my arsenal of pills and rinses.

In other more exciting news Adam and I are now engaged. He proposed while we were in Ottawa in the beginning of March. We don't have all the details worked out yet, but we are planning on a small wedding. I'm afraid anything too large would just be overwhelming given my current situation. Thank you to everyone on facebook and otherwise for the congrats and support :) I'm really excited!!
I will hopefully get around to editing some of the Ottawa pictures soon, and post some of them on here. I forgot how much I love that city!!


meg xo

Seven Down

For the first time in about two and a half weeks this little chipmunk has been able to feel her cheekbones! Today is going to be a very good day indeed :) What is sometimes referred to as "moonface" by those of us taking dexamethasone appears to be subsiding. I have been able to reduced my intake from 16mg/day when I started (Jan. 26th) to 6mg a day. Tomorrow I will drop down to 4mg/day :) This is pretty exciting news as the steroid has been wreaking havoc on my sleep schedule for the past month. For a girl who regularly gets 8 hours a sleep a night, dropping down to 4-6 hours and waking up at 5am has been disheartening to say the least. Things seems to be looking up though, as last night I was able to capture 6.5h and I'm taking that as a big old victory.

ALSO!!! Today is officially the half way point of my first round of chemotherapy! So far, the only issues that I am dealing with are some tingly feelings in my hands and feet, some general discomfort in the stomach area, a little nausea, a tiny cough and one tiny mouth sore. I'll admit that the mouth sore is totally my fault for not rinsing with baking soda twice a day.  I'd say I'm doing pretty well considering the last time I was going through chemo, I had already been hospitalized at this point! Knock on wood.

To jazz this entry up, I have a few pictures that I would like to share with everyone.
I have been documenting a few of the things I've been doing with my friends and family over the past month or so. Some of them were low key, some of them, like the symphony, a little more extravagant :)

Jan 29, 30 &31st
The weekend after I was diagnosed, Adam and I headed up to St. Catharines, ON to visit with Asia and Peter. Little did I know that the group had planned for our friend Stephanie to surprise me. I haven't seen Steph since December 2008. Far too much food was consumed, which I will blame on the steroids ;)
On Sunday, I was also fortunate enough to be able to catch up with one of my favourite people, Mr. Kyle Foster :) Kyle made the trek to Hamilton to meet us for lunch... turns out that everything in Hamilton with vegan options is closed for lunch on Sunday, so we had to resort to KFC... which serves a vegan friendly chicken burger.

Pure sugar water. Pretty darn gross.

Feb. 12th, 13th, & 14th
This weekend Asia, Stephanie, and I headed to Detroit to hang out with Adam.  Peter, Jordan and Jess joined us on the Saturday.

Asia and Steph at Red Robin. I gain 5 pounds every time I eat here.

Adam calls it Chuck E. Cheese for adults and he isn't kidding!

The ladies first time at Target. 

On Valentine's Day, we all went to a fancy vegetarian restaurant for breakfast.

Peter (et al.) slightly annoyed that he had yet to get a coffee after being in the restaurant for 15 minutes.

Feb. 19th, 20th, &21st
This was the weekend of the symphony. Upon arriving in St. Catharines, we made our way out for dinner with Asia's family to celebrate her sister Kasia's birthday. I think I can speak for everyone when I say that it was a pretty amazing evening. Then next day we headed up to Toronto and had dinner at Fresh with a few friends before heading to the symphony. As a post symphony celebration, we headed across the street from the hotel to Jack Astor's to enjoy the less serious/refined side of life.

Jordan. Not entirely sure what he is doing?

Asia showing me how to kick the crap out of cancer.

Steph and I

Peter and Tricia :) They really weren't bored. I swear.

Kasia, Asia and I at the Symphony

Jack Astor's 

Me sleeping in the Royal York Hotel... feeling like a princess.

Sadly, there is no magic crystal ball

On Monday, I finally managed to wrap up my 10th session of radiation. I have to say that it was a relief, as the driving to London everyday was quite tiring. As of yet, I haven't noticed any side effects, with the exception of fatigue. I find I wear down very easily but this should ease over the next couple of weeks. The radiation treatments themselves were short and sweet. My treatments were delivered everyday using a Tomotherapy machine. This machine is used to specifically target the areas of tumor growth, so there is less damage to surrounding tissue.
I suppose I should try to clarify just a little. I did undergo full brain radiation in order to halt the growth of two very small tumors in my cerebral cortex. The Tomotherapy aided in lining up the radiation with the two larger tumors in the cerebellum so the surrounding tissue was not damaged, only the cancer tissue. Both the full brain radiation, and the more specific radiation on the larger tumors are done in the same treatment session.
The Tomotherapy treatment itself has 3 stages.
<3 point form :)

A link to what the machine looks like -www.boston.com/yourlife/health/blog/TOMO1-web.jpg

1)I enter the treatment room and lay on the bed (read:hard table) and my lovely techs offer me a nice warm blanket to make me more comfortable (love them!). My face shield is strapped on (I'll get to that in a minute) and then I'm sent into the machine for a CT scan (5 minutes)

2) I pop out of the machine while the techs match the CT scan with my planning scan and ensure the radiation will be delivered exactly as needed. At this point I'm just hanging out in the table waiting for them to come back in.

3) The techs enter, read off some numbers, adjust some junk and tell me treatments is about to begin. They leave, and I get swished back into the machine.
I undergo 6 minutes of treatment. The sound resembles a vacuum for about a minute, then a noise starts circling my head that sounds like an old train engine chugging around the tracks.

I've told a few people about this, and they seemed to get a good chuckle, so I will share with you as well. When I was on the table going through the treatments, I needed to entertain myself. Everyday, I may or may not have been picturing myself riding around on that "train" in full out wild west style cowboy gear with a radiation gun shooting the crap out of the two larger tumors. If I know you, you may or may not have been beside me at some point, also dressed up in full on cowboy gear shooting along side me. Umhum. Okay, enough embarrassing stories for now. Oh, I forgot to mention that there were the most amazing flashing blue lights that started about 3 minutes in and lasted about 2 minutes. Had the techs not warned me about that, I probably would have thought that... well, I'm not sure. Apparently it is common, so there was no need to worry.

Two quick pictures of the face mask-



So... that was my radiation. It didn't hurt, just made me really tired. If anyone has any questions you can ask in the comments section and I will try to answer as best as I can :)


Onward to Chemotherapy.
I will try to keep this section as short as possible as I know the radiation had a lot of reading.
I spoke with Dr. Vandenburg on Tuesday regarding the best options available to me for chemotherapy. I've decided on taking oral chemotherapy at home with the intention of maintaining, if not shrinking the bone, liver and neck mets. I have chosen not to undergo any sort of stronger intravenous therapy. I realize that this is difficult for some people to understand, as they will just want these tricky guys to disappear completely, but my quality of life is just important to me as my length. At this point these mets aren't impairing my quality of life. If I can keep them under control and be able to focus on the things in my life that really matter, I am more than happy with my decision.

I will be undergoing 14 days of oral chemo, followed by 7 days off. This will happen for a total of 3 rounds and then we will evaluate how effective the treatment is.
If after 3 rounds the treatments aren't working, I will consider more drastic options, but for now, I'm happy with being able to take my medications at home and enjoy my friends and family.

As for the drugs that I am on, the side effects shouldn't be nearly as severe as the last chemotherapy I was on (Thank goodness!!!!)
There will possibly be heartburn, diarrhea, and something called hand-foot syndrome which causes the skin on my hands to get red and thin. Apparently I am supposed to put Udderly Smooth Udder Cream on my hands and feet to prevent this. Kind of strange? I could also experience pain or tingling in my hands and feet. I may have issues with mouth sores, so I have to start rinsing my mouth with baking soda/club soda.
Less common side effects include Fever, chills, cough, nausea, vomiting, bruising, chest pain, and red spots. Fingers crossed I don't experience any of that!

I am being put on another drug to help strengthen my bones and reduce any pain associated with the bone mets. It may cause nausea, vomiting, diarrhea, and stomach pain. Less common side effects include change in kidney functioning. I'm starting off at 1 tablet 2x/day and then increase the next week to 2 tablets 2x/day. The pharmacist said that if its too hard on me, then I can take it back down and go up more slowly.

Okay, so that wasn't as short as I had hoped.
Thanks for reading you guys. Your support and love are so amazing. I thank my lucky stars every day that I have such an amazing support system. I can't thank you enough.

Meg xoxo

OLD Radiation Part 2

This is part 2 of the old radiation blog that I wrote.
I revised it a bit to try to keep it short and sweet.
Fear not, the pictures are less graphic this time ;)
I'm in the process of writing about the radiation treatments that I am currently undergoing, and hoping to get that post up in the next couple days. As far as info regarding my future chemotherapy and whatnot, I won't have any new information on that until I speak with Dr. Vandenburg on Tuesday, Feb 23.
Thank you so much for reading:)
Love you guys!!!


June 15th, 2009
Radiation treatment #1

Somehow on my first day of treatment, I managed to arrive late. As I think I have mentioned about a hundred times before, I HATE being late for things. Upon my arrival, the tech was actually waiting for me at the front desk to take me back to the radiation room. Kind of felt like a total jerk. However, the radiation techs at the London regional cancer clinic are probably the most fabulous people in the world. After walking down a rather long hallway, my tech showed me the change room and told me to sit in a nearby waiting room directly outside the radiation room until I was called in.


The first day of treatments is by far the longest and most tedious. The techs are required to measure and re-measure everything once you are lying on the "bed". As you can see, the actual machine used for the treatments looks quite a bit different that the one they use in the simulation. The techs are pretty proud of the machine that they were using, as it is the newest one in the hospital. State of the art :) That made me feel pretty darn good about it.





As you can see, it swiveled.



I literally spent about 7 hours of my life staring at this picture. No Joke.

After I had been pushed, tugged, moved and rolled into position with my right arm planted above my head, the two techs left. I didn't realized this until much later (when I overheard a doctor telling a resident) but the walls surrounding the treatment room are 6 feet of pure concrete.
Everytime the techs left the room, they would hit the little button pictured below, which lit up the signs beside it.


Once I was properly aligned on the table, the procedure was something like this-
1) machine swiveled down below my field of view on the right side followed by a loud buzzing noise for 30 seconds (yeah, I counted)
2) tech entered the room to ensure I was still aligned, while machine is swiveling to my left side
3) tech leaves and shortly thereafter, another buzzing sound lasting 30 seconds
4) tech comes back in again, checks alignment leaves, machines rotates to directly above me
5) loud 30 second buzz and techs come back in and tell me I'm all done.

I did this 5 days a week for 5 weeks.
By the end of it I was completely exhausted. Looking back, I feel this was mostly due to the fact that it took a solid 2.5 hours of driving everyday. Flat farmland for an hour each way. Flat. Pretty sweet. Haha. I shouldn't complain though. I know that there are many people that drive far further than I did everyday for their treatments :)

This may sound a little strange to some people, but when my treatment were finally over, I was actually a little sad. The techs had basically become friends. I saw them almost as much as I saw my family. We chatted about our lives, about the school course that I was taking at the time, about our respective plans on the weekends, birthdays, everything. On the last day, knowing I would probably never see them again was a pretty big bummer. I can't give them enough credit for how fabulous they were.

The end result of the radiation was not nearly as bad as I had assumed that I was going to be. Here are a few pictures of what my chest looked like after I was finished the radiation. I was very lucky, as I hardly had any reaction to the radiation at all.




That last one was taken by one of the techs during my last days.
The blue covers are were my right arm would sit during the course of the treatment.
As you can see, I was still lacking my hair at that point :)

OLD Radiation Part 1

This blog was originally written quite some time ago (as you can see by the date below) It's the first of two parts that describes the set up and treatment for my radiation on the right breast. I know I've been promising it for... pretty much ever, so today is my day to get it up :) Hope you enjoy!!



May 26th, 2009 10:00am

Radiation Simulation

Ok... So the good news is that I don't remember all the details about the simulation, so you won't be boring you to tears with facts and junk for the next... oh 10 minutes.
The bad news is that I am going to try to write about everything I do remember. That being said, it is entirely possible that some of the info could have just been imagined in this pretty little head of mine...or I might actually be adding in stuff to make it more interesting for you, the reader (which, now that I think about it, is also good news for you).

Where to begin...

I arrived to my appointment a little late, as traffic in London was horrific and they were just starting construction on the main road. Overall a good start to my day, however, I was going to be heading straight up to the cottage after the simulation, so I didn't much care. (those of you know know how anal I am about being on time know that the previous statement wasn't true).

Anyway, I arrived in one piece, checked in and was guided to a changing room by a very nice woman, we will call Francis. After changing into my gown, I was lead into a room where I came face to face with this-



As you can probably tell, I was to lie on my back, with my right arm up over my head in those little blue and grey cuff like things. The blue foam thing at the bottom of the "bed" was where my legs were to go. Overall, I'd give it a 6 out of 10 on the comfort scale. Not too shabby.

Well, not too shabby until you had been stuck in that position for 30 minutes. That was about the time my hand started to get cold, as the blood was finding the journey to my fingertips rather arduous and it apparently gave up.
After 45 minutes, pretty much my entire right arm was asleep.

The whole time the life was slowly draining out of my fingertips, the techs would come in, measure, move me, measure, move me, measure and walk into the other room only to come back a few minutes later to do it all again. When I was finally in the correct position, I was told not to move. Then the machine started up and made some really loud, funky noises.

When it was finally over, Francis came back in to inform me that now, the tattooing would begin. These would be necessary in order to set me up in the exact same position every time I came in for radiation.

Sweet.

One might think that at a large hospital, they would have a rather sophisticated method of tattooing the radiation dots on the patient. I'm sure you are envisioning the beautiful tattoo gun, shiny and new.
Wrong.

Now, picture a big-ass needle and a container of ink.
Yup, the delicate procedure for my prison tattoo went something like this- 1) Place ink on skin 2) jab skin with needle 3) twist needle, just for fun 4) remove and wipe.
The results look something like this-








Okay, so it wasn't THAT painful. Honestly, my grandmother made it though at 85 years old, it's not that bad.

After the tattooing, I was allowed to leave.
Feeling rather bold, I decided that I wasn't going to wear my head scarf the entire drive up to my cottage. This might not seem like a big deal to most people, but being a 27 year old bald woman, it was a big deal to me.
The reaction was pretty much what I had anticipated, some stared, other acted as if nothing out of the ordinary was occurring. Interesting.

At least yesterday was a good day...

I've been sitting here for a while, just trying to figure out exactly what to say in this post. I suppose that there isn't really any good way express the news, so I will just come out and do it. I spoke with Dr. Read today regarding the results of my MRI, CTs and bone scan... they weren't ideal.
As it turns out, my breast cancer has also spread to my bones (left hip and shoulder), my liver and into at least 1 lymph node on my neck.
Where does this leave me? Well... our first focus is still on shrinking the tumors in my brain. I will continue to undergo my full brain radiation for 10 sessions (only 7 left!) and then meet with my medical oncologist Dr. Ted Vandenberg on Feb 23, 2010 to discuss chemotherapy options to get rid of the rest of the pesky tumors.

Although speaking with Dr. Read today obviously was difficult, I was still left with quite a bit of hope for the future. As far as the chemo goes, she can't tell me much but, she left me confident that if one doesn't work as effectively as possible, there are other chemo treatments that I can undergo to try to get this thing under control.

There are also other options available to me for the brain mets. Dr. Read informed me that Gamma knife radiosurgery is still an option in the future, but we have to wait a few months to see how effective my current radiation is in terms to shrinking my tumors. (http://www.radiologyinfo.org/en/info.cfm?pg=gamma_knife)

I have options, and I plan on fighting as long and as hard as humanly possible.
Like I said before, I've got a list, and I'm not stopping until I achieve everything on it. Heck... when that one runs out, I may just start a new one :)

Radiation day 1

Hi all,

I finally got a call from the radiation department this morning at 8am regarding my first appointment. I start today at 12:30pm and will have appointments every day for the next 5. I get the weekend off (yippee for some normal time!) and then will have another 5 days of treatment in a row.

Fingers crossed, I will be finishing up the radiation Feb 19th.

The only bummer about the appointment times is that they can change from day to day. Like... significant changes. Like you think you have to be there the next day at 8am and then they tell you that they changed the appointment to 3pm. Makes keeping life normal a little...um... difficult? I suppose that is what I have to learn to live with for the next while though. The un-normal.

As for my test (MRI, CT, Bone scan and blood work) results, I still have no word on them. I will be meeting with Dr. Read on Wednesday and will likely hear what the deal is then.