Raising Hope for Emma Lee Stewart

The Reason For Hope Compilation CD's can be ordered via email to TheReasonForHopeCD@Gmail.com payment can be made via Interact Email Money Transfer. Mail orders with payment by cash or cheque can be made to :
The Reason For Hope
170 Temperance Street New Glasgow, NS B2H3B1 ($20.00 Includes shipping)

Monday, February 28, 2011

Meeting with Oncologist Today

I had an early morning meeting with Dr. AJ Kumar today. Thought I was seeing Dr. Eunice, but saw Dr. Kumar instead. He told me "You're doing well". Should I repeat that? "You're Doing Well". My CT scan showed stability. Nothing new. Chemo is working. The gals in the Clinic will call me when to start Aredia -probably on the 11th when I have my next Abraxane. The Aredia is not a chemo, rather a bone strengthener. An MRI will be ordered of my brain, because of the headaches that continue. Dr. Kumar was reluctant, because he doesn't want me to have to go through unnecessary appointments, etc. I want it. He reinforced that if the chemo is working in one location, it is highly unlikely that anything is going on elsewhere; however, the brain is a different animal (from my research). I want to know if anything's going on. So, I'm getting one. I'll have my next CT in June and with luck, take the summer off chemotherapy. Summer hair do!

It was great to go early, not have to wait, and have some good news. So have a great Monday! I plan on have a little celebration with my family.

Peace today, Emma Lee

Friday, February 25, 2011

It's Friday!

CT Scan appointment was uneventful. After a long walk with Honey, Karen arrived and we headed out. I consulted with staff, told them my history and concerns and it was determined that I need not utilize my port - so we veined it - no problems - in and out in 10 minutes. Karen and I went for lunch and we sat in the sunniest location we could find. It was warm and wonderful.

I have to tell you that the Bolton story is really bothering me. There is lot more to this than we know. We will now have to live through this issue for the next "while". It raises so many issues. I will try my best to keep my thoughts straight about it. These things I know: Barbara had advanced stage 4 breast cancer - metastatic breast cancer, and it is said she was battling for years. She was getting to the end of her battle - was her husband alone in her care? Where was palliative care? Anyway, I'm not going to go on right now. During my morning walk it really hit home - there I was in that gorgeous sunshine crying as Honey and I walked along. I couldn't help it - my creative side always gets involved - and a poem entered: Will You Call Her Emma? for the future grand child that I may or may not get to know. Sorry. That's my reality. I had to pull myself out of it - and I did and I will and I am.

MARY'S HOME! (Honey is really happy.) Got home with Jim last night. So for a while the nest is a bit fuller! Tickets for her March 1 show available at 752-4800. Robyn is the real thing apparently. Hope to see some folks out. I do know that tickets are selling and there is a limited capacity. She asked me to sing a song!

Got my list for Monday. Fighting a stuffy nose/sore throat - hoping it does not progress. Funny about tomorrow - I hear there's weather on the way.

Okay - "they" say we should get our chores done early today and we are planning on a turkey dinner tomorrow with Mary, with all the trimmings so off we go! Hospital, groceries and church are my new reality.

Peace to you, and thank you for your positive comments and continuing support. It means a whole lot to me and my family.

Emma Lee

Thursday, February 24, 2011

Sometimes it is lonely – Guest Post

Sometimes it is lonely – Guest Post

Chronicle Herald Exclusive

I shared a post from the Chronicle Herald. You will read of the desparation. The realities of Metastatic Breast Cancer.

'I am racked by guilt'

'I am racked by guilt'

Off to CT Scan, Etc.

I had a very restful night, despite the chorus of backup trucks. Surely New Glasgow's winter snow removal budget was completely used up over night. I wonder if somemone chooses the backup pitches. There is certainly a wide variety. How much thought goes into that I wonder. I was also wondering when the sound is engaged - is it directly upon putting the truck into backup mode or is it when the truck actually starts to backup. It would be so cool to have a variety of trucks, with their various pitches, and write a short piece of music (1 min) - to be conducted and performed in a very large parking lot, complete with stadium lighting. The conductor could be on a snowmobile. The parking lot would have to have a layer of snow on it to produce the proper tones. The piece could be called the "The Awakening". It would be written around the various pitches of the vehicles, and include dynamics like crescendos, if at all possible. Would that be possible? Hmm.

Thanks for allowing the vent yesterday and for the kind words it elicited. You guys are too awesome.

Off to CT scan.

Tickets for Mary's March 1st show at GlasgowSquare Green Room are now on sale - available at the GS box office - 752-4800. Getting anxious to see her!

Peace today,

Emma Lee

Wednesday, February 23, 2011

I'm Venting

Okay. So, am I a loser? So, I didn't beat breast cancer. I'm not one of the great ones - the survivors - the heros: one of the folks that people uphold as champions, as winners, as the best. Okay. 25% or 30% of women go on to develop metastatic disease. We are a reality. We exist. I didn't beat breast cancer. I am shouting! I DIDN'T BEAT BREAST CANCER! I have developed metastatic breast cancer. Am I a loser?

Oh my, oh my, oh my. I'm so tired . . . . .

Enough Already - Snow That Is!

Is it just me? I awoke in the night to the sound of the winter wind howling in that way it does and I thought enough already! Then my hopeful side tells me that we spring forward on the 13th of March and March 20th is the first day of Spring. It's Feb 23rd - less than one month away! Don't get me wrong, however, I'm not wishing the time away.

As I type this message, Honey is trying to find a hiding place for her after walk biscuit. She will check every chair and the couch for proper places. She will check my three favorite blankets, which officially are off limits. She will guard that little biscuit until she is ready to eat it. You can tell where she hides it, because she will sit close to the area and if you happen to walk by, she changes her posture - she's pretty predictable and cute to watch. She loves the snow and doesn't care about the temperature - her coat has grown so thick and she's just a determined little gal!

Yesterday started as a down day. Side effects had me feeling pretty unwell. I would describe it as like a bomb ready to explode into a variety of infections. I spent the day pretty low, working to heal myself. An afternoon call from my sister-in-law Mary really picked me up emotionally. (Trivia: Jim's grandmother's name was Mary, my brother John married a Mary, my brother Lorne married a Mary and I gave birth to a Mary.) Mary and I had a great chat and I felt so much better. Thank you Mary. She even convinced me to call a friend who wants to come and help me clean the house. I haven't had the energy to do anything really since Saturday and my Mary is coming home. Anyway, my friend is going to come with me for the CT scan tomorrow, then we'll get some lunch and then home to clean-up before Mary arrives.

Stay warm. Not long until Spring, but why wait? Enjoy life right now. I plan on continuing to feel well in any way I can, which means a great book, a perfect quilt and a little living furnace who loves to cuddle!

Peace, Emma Lee

Monday, February 21, 2011

Mary's Coming Home Soon

Mary will be home next weekend. Yay!! Can't wait to see her. She's coming down because she's doing some shows with Robyn Dell'Unto - specifically Glasgow Square Green Room on Tuesday, March 1st. Then the two gals will be heading back to Ontario, via the road, stopping along the way to perform!

I am so hopeful we can fill the green room which has a capacity of 35 - 40.
Tickets are available at the box office - 752-4800.

This sounds crazy but Church was really awesome yesterday. We didn't have a great crowd cause, guess what, it was snowing and had been snowing for a while. Anyway, It's A Wonderful Life is now in the public domain and we were able to re-jig it to It's A Wonderful Church. We had a great team in place including the music team - The New Hope Seekers, with Murray Smith on bass and Alex Lank on drums. Jim WC outdid himself as Clarence, Angel Second Class and George Bailey was really happy when Clarence finally did get his wings at the end of the day. My Jim kept threatening to throw in his wonderful Jimmy Stewart impersonation, but I would have just lost it. Anyway, I think the drama was a wonderful way to reflect on how much the church really does in our local and worldwide community. (As an aside, and way too big a question - where exactly are we headed?)

Unfortunately, I over did it and neuropathy came on full force after church. The worst it has been for a while. I got a chill that would not go away and ended up in significant pain. We finally got it under control late afternoon and a sleeping tablet made sure I had a restful night.

As Jim is home with the car this a.m., I am going to get as much business done as I can, including picking up the Telebrix for Thursday's CT scan.

Can't wait to see Mary. I pray you have a great day and that you are excited about seeing someone too!

Peace to you all.

Emma Lee

Saturday, February 19, 2011

Treatment Yesterday

Well, the day yesterday started off well, and that spirit continued. My port was a breeze. A very adept nurse, Amanda, hooked me up, and I felt NOTHING! NADA! NOTHING! That is an absolute first. Then as the drugs began, there was a sort of flutter at the port site that corresponded with the drip of the drugs and the sound of the dispensing machine. I hope none of you ever have to sit next to one of those machines, because they can become hypnotic, but, in any event, another couple of rhythms to add to my arsenal of rhythms. My musical friends will either be happy or sad with that news. Home to predictable side effects and a very early evening.

BTW, the clinic was busy today, but incredible as it may seem, no one was down. In fact, telling funny stories to the group and group laughter was pretty much the tone of the day. The clinic is simply two hospital rooms, with the middle wall taken out. There are three "chairs" on either side facing each other, with the nurses station along the wall and a chemo washroom in the corner. One big window faces the hospital hall. There are many other "rooms" where folks can go to have complete privacy. Many of us have to be watched while the drugs are being administered - blood pressure, pulse, injection site - some need to have their drugs administered by hand within a certain time frame, etc. It's quite amazing. And you can have all 6 chairs going and people in private rooms - with 2 or 3 nurses. If you want privacy, it is certainly available. But if you want company, it is there, and many of these folks are not down at all - but sharing happy tales of things in their lives. It can be quite uplifting. I think back to days when I would be complaining about something trivial. I cannot imagine what it would be like to have a child there.

Today we are having a rehearsal at the church between 10 and 12 for tomorrow's service.

I want to thank you all for your continuing support. I'm giving it all I can!

Another BTW - I awoke to Puff letting me know the crows are in the neighbourhood. Opened a window to hear their lovely caw in the pre-pre-dawn morning. I must get out to investigate.

Mary is having some troubles. Send your prayers her way too! You know she will be at Glasgow Square Green Room on the 1st of March. I am praying for a full house (35 - 40!). If you can support the show, it would mean a lot to us. Tickets available at the Glasgow Square box office - 752-4800.

Peace today!

Emma Lee

Friday, February 18, 2011

Dental Emergency, Then Chemotherapy

Well, yesterday was indeed a most glorious winter day. I hit the hospital early for my recheck with Dr. Cole, and blood work in anticipation of treatment, and then Honey and I had our mid-morning walk. Lots of children about for some reason yesterday morning - perhaps the Grade 6 class walking to the Junior High for orientation? Whatever it was, Honey was amused. The sun came out about 11:30 or so and wow - it warmed the air so that our afternoon walk was glorious. When we finished up and came back home, Honey climbed the snow banks to see if her friend from next door was out. We had a great game of catch the snow ball, which Honey loves, and we ended up quietly sitting together in the sun in the snow watching the world go by. It was magical. I finally had to say "house" when my bottom started to get cold. I am going to hold onto that moment all day today.

Thank God for fabulous dentists. My first bite into supper last night crunched when it shouldn't have and I had an uneasy night waiting for 8 a.m. Lynda Munro is my super dentist. This is her day off - she came in to fix me up. I am half thinking it had something to do with surgery last week, but will let that go. In any event, she fixed me up and I am sitting here typing waiting for my one and only cup of dark roast to brew. Then off to the hospital. First time for the new port. I'm serious, if there's a problem, I'm telling them to find a vein and get those drugs into me. I have no intention of feeling like a pin cushion!

Women Alike are going on a sleighride tonight. If the current weather holds it will be glorious. Because right now, outside, is probably the greatest fresh air I have ever had the privilege of deep breathing and filling my body.

I was supposed to rehearse with Shaun and Karen this morning, but of course, had to send along my regrets. We are doing something very special in church on Sunday. We are presenting "It's A Wonderful Church". It's a drama based around "It's A Wonderful Life". Shaun and I will be rocking out an anthem, with any luck. Mary WC and I had the privilege of working together on this one and I know it will be fantastic. The service carries a powerful message.

So, off to deep breathe, soak up vit D, and then Hospital.

Peace to you all today,

Emma Lee

Tuesday, February 15, 2011

A Very Blustery Winter's Day

Wow, day after Valentine's Day, and man, oh man, is it blustery out there. Honey has trouble keeping her breath in that wind. I don't like this weather. It leaves me feeling unsettled. I had a bad night last night and am hoping to have a quiet afternoon. The wind is eery, however, and I have a very strange feeling.

Okay - everyone, stay safe!

I see Dr. Cole Thursday morning for a recheck and stitches on the left side out and his review of the new port on the right side. I still have pain believe it or not. Next chemo Friday morning, using the new port!

Peace to you all today. I am trying to hear the wind as music!

Emma Lee

Friday, February 11, 2011

It's Friday and I'm on the Mend

I'm on the mend. Lynn and Linda drove me to the Hospital on Wednesday around 11:15. All went well and according to plan. I went into surgery around 2 and woke up in recovery around the 3:15 or so mark. I have to again applaud our nurses, doctors and other staff. Jim picked me up around 5:15 and home to rest. Yesterday was a completely down day. My arm and shoulder are starting to move more today. I'm on the mend. I now have a patchwork chest! Next chemo on the 18th, CT scan on the 24th, seeing the oncologist on the 28th.

Honey is finding it hard not to snuggle, so is Puff. So am I!

Thanks to all for your positive thoughts and prayers.

Emma Lee

Tuesday, February 8, 2011

Sometimes You Just Want to Scream

So I had lunch with gals from the Women Alike Dragon Boat Team yesterday. We had hoped to go to BaKed, but ALERT - it is closed on Sundays and Mondays! So we went to Mings. I do love Chinese food and it is a rarity for me nowadays! I loved my lunch, both the food and more importantly, the friends and conversation.

I have friends offering to take me to the hospital tomorrow - as soon as I find out when I am scheduled to go. I won't know that til after 2 this afternoon. I have to admit I'm not looking forward to it. I already know what to expect. I will be cold, physically and in spirit. Jim will have to come home to collect me and look after me for a few days. I will meditate to try and calm my nerves in advance. It must be done. This is when I really want to scream.

Luckily, we don't remember pain.

Okay - enough. I'm going to put on Let It Be and clean the house and then play some music.

Have a safe and great few days. I'll be in touch soon.

Peace, Emma Lee

A Couple of Posts Before Tomorrow

Surgery is "scheduled" for tomorrow. Not sure how long I will be laid-up. So, I'm going to post a couple of items in the meantime. I sent the following posting off to the Canadian Breast Cancer Network for their upcoming newsletter. I had a great chat with a fellow metastatic patient yesterday. I am seeing clearer now that we are the present but invisible - we are the bad news stories that must be read. (BTW - when I refer to my sleepy little town, it is with deepest affection.)

WHEN ORDINARY BECOMES EXTRAORDINARY
Submitted by Emma Lee Stewart
February 7th, 2011

I’m fortunate to have a little dog that needs my daily care and attention. Honey keeps me active. We are up early each morning and by early, I mean between 5:00 and 6:00. Just about the same time I used to rise to ready for work. Getting dressed takes probably 5 minutes, because it’s cold out there, and layers are needed, including long johns. Here in Atlantic Canada we are in the midst of a normal cold, snowy winter. But to my point – these early morning walks have turned into a time of quiet introspection for me. Honey enjoys the walks more than I, but little does she know that these jaunts through sleepy town Nova Scotia have allowed me to turn my attention inward in an attempt to make sense of, and put into its proper perspective, my metastatic breast cancer diagnosis.

I was initially diagnosed with breast cancer (ER/PR+) on December 21st 2006 and went through surgery (right mastectomy, ALND), 4 rounds AC chemotherapy, 16 radiation treatments and a 5 year prescript for Tomoxifan. I was then set free to rejoin the employed. I bathed in pink as I was adopted into the survivor ranks. I joined the dragon boat team, created The Reason for Hope Society (which to date has raised $16,000.00 for cancer related initiatives), took over team recruitment for the Pictou County Dragon Boat Society, became an advocate with Breast Cancer Network Nova Scotia and yes, wore pink. I shouted and cheered and walked as a proud survivor. It really wasn’t too long however before the feelings of unwellness that accompanied my original diagnosis began to subtly reappear. My doctor was not too alarmed. I had regular blood work and a CT scan, but nothing showed. Pain became more pronounced in my upper right side and I continued to protest. I was told that my doctor saw hundreds of people every week with that pain. Blood work in early ’10 showed vit D was completely deficient. My doctor then closed shop, leaving me doctor-less. Luckily, my original surgeon took over my care. I had an abdominal ultrasound late April and on May 17th it was confirmed that my original breast cancer had metastasized in my liver: “seeded”. Since then, mets have been found in my thoracic spine. I continue to experience brutal left sided headaches but so far nothing has been found. I will continue to protest.

Back to my early morning walks. One morning it was particularly quiet. A light dusting of snow had fallen over night, leaving the world beautiful and clean. I allowed Honey to romp and investigate the snow as she wished, as I contemplated my reason for being. I suddenly noticed her completely still, head cocked slightly to the right, ears alert. I looked up and there in front of us was a beautiful young deer, probably two years old. Now I described my town as sleepy town, and it is, but there are more than 9000 people living here and it is a “town”. This wonderful creature was in the middle of our town, just as scared as we were. Honey doesn’t stand a foot tall, but man was she ready. The chase was on. You can guess the outcome. Honey didn’t give up, and I allowed her to follow the deer tracks through the snow along MacKay Street, up the path by the junior high, past the soccer field, right onto Albert Street, and then left, starting up MacLean Street before I stopped her. That was far enough and my ice grippers had failed by that time. The deer escaped. But Honey’s actions solidified something in my mind. When my oncologist told me I would be receiving palliative treatment for an incurable disease I must have looked at him the way Honey faced that deer: at first terrified, but eventually resolved to fight the good fight.

So, here I am: 53 years young, stripped of career, on a fixed income, fighting for as much quality/quantity of life doctors and their prescriptions can give me, having been diagnosed with a disease that currently has no cure. I am feeling very fortunate to live in Canada, but I am not exactly living the dream I had as a little girl. Explaining this disease to family and friends is difficult. It’s a tough sell even to survivors. This organization (CBCN) can give you the Canadian stats on numbers of women who go on to develop the dastardly metastasis. Friends I have met in the US tell me that 25% of women there diagnosed with early stage breast cancer go on to join me and 150,000 are estimated to be living with it. I am told that treatments have come a long way, this disease is becoming known as a chronic disease and that “stable” is good, “ned” (no evidence of disease) even better and to be wished for. I am taking in all of these things and trying to be patient, listening and understanding with my heart of hearts. Truth is I spent a lot of time healthy never listening with my heart of hearts: I now find her a constant and reliable companion. I think I’m too young for this, but obviously this disease doesn’t care what I think. I still have dreams. I’m still curious. I’m still creative. I still want to contribute.

That morning with Honey was beautiful. It was cold, but the sky was clear and the sunrise was just offering a hint of itself. The star in the east was the most brilliant I think I have ever seen. The air was fresh and delicious and, despite everything else, I have to admit I felt pretty good out there sharing the experience with my faithful little gal. I pray for all who have received this diagnosis that you are able to put it in its place; that you suffer little; that you are surrounded by love and beautiful things. Selfishly I pray that my son and daughter are spared this; that I am able to write and sing for as long as I can; and that early morning walks continue to allow me to see and feel beauty in the ordinary, appreciating the extraordinary goodness that is in my life.

Emma Lee Stewart of New Glasgow, Nova Scotia, was diagnosed with metastatic breast cancer on May 17th, 2010. She has been receiving palliative chemotherapy since July of 2010. A blog of her journey can be found at www.raisinghopeforemmalee.blogspot.com.

Monday, February 7, 2011

This Past Weekend

What a great weekend. Good friend Liz arranged for a "Girl Power" weekend. When she asked me a few weeks back if I thought it sounded like a good idea, you know the answer. So we grabbed a calendar, I charted out my treatment schedule, and the date was chosen. Jane made her country home available and even the weather cooperated on Saturday. I was able to ask 14 friends. Saturday and Sunday was spent with fabulous friends, unbelievable food, manicures, pedicures, reflexology and massage. Liz chose the nail colors that were used. We laughed and sang and chatted and if there had have been another couple of hours, would have enjoyed the toboggans and sleds that were there for us too. Just too much to talk about and too much to do!

I fell asleep Saturday night to the sounds of my friends having fun - singing and laughing and dancing and celebrating life. They couldn't have kept me awake - I was exhausted from laughing. Oh, and Liz and Doris tucking me in helped too. It was magical. I even made them take part in my meditations on Sunday morning. Lucky for Jakki, Church was cancelled and she could stay to enjoy Mary's unbelievable breakfast. Jak and I had the chance to get a couple of tunes in before we hit the roads home.

I had the chance to let my hair down - the fact that I don't have any hair doesn't matter - I was able to dance and romp and laugh with abandon, safe in the company of friends. Just to forget for a little while! Yay!!!

Honey was so happy to see me, Jim was too. He had superbowl treats prepared, but I must confess, I didn't see any of the game.

Port surgery on Wednesday.

Peace to you all. Emma Lee

Friday, February 4, 2011

Honey and I


I found this picture today and wanted to share it. Honey and I from last summer. It was taken by Sueann Musick of the NG News. I still haven't figured out how to load the pictures I look in the recent snow storm. I have a great shot of her frozen paw print! The snow recently was deeper than she is and I had to blaze a trail. But man does she love the snow. She was romping like a kangeroo and as happy as a dog can get.

Blessings!

Emma Lee

Wednesday, February 2, 2011

Extraordinary Gestures

Back in 07 when I was in Halifax at The Lodge That Gives I shared a room with a gal from Yarmouth. She was receiving radiation too, but hadn't received chemo and therefore had a grand head of hair. She often referred to it as her crowning glory. My crowning glory was/is a very nicely shaped head, bald and prone to hot flashes, so therefore, revealed for all to see. It is true that you don't always know what you've got til its gone because that's the way it was/is with my hair. I didn't really think about it that much until my room mate reminded me how a grand head of hair can complete you.

I attended Florence's funeral this afternoon, to sing with the choir. Funny as it seems, these events are helping me deal with my new "ordinary, everyday" life. I enjoyed some fellowship and wonderful UCW tea, sandwiches and sweets, then headed home. Snow is falling in earnest by my walk home, so when I didn't see any foot prints to and from my mail box I almost didn't check. But, decided what the heck. What greeted me filled my heart to overflowing.

A letter postmarked UltraHair Solutions Halifax. I thought - what's up with that? So, after Honey was settled, I gathered my glasses, went to my easy chair, turned on my reading light and opened the envelope: inside is a lovely two-tone pink/salmon card, with the word "thanks" written in gold along the top. Hmm. I opened the card and two enclosures spilled out to reveal this message, neatly handwritten in lovely script:

Dear Emma, I am writing a note of thank you for all the things you have been doing for your community. I have heard about you through a friend of yours Jordan MacKay. Jordan sent me his ponytail in honour of you. I took a look at your blog and it is amazing! Keep the spirit and faith going. Jordan's ponytail will be sent to one of my factories that make wigs for less fortunate kids that need hair while going through chemo. Anytime you are in the city drop by! Cheers, Devera Giles. (Her business card - UltraHair Solutions & Esthetics - 1770 Market Street, Suite M100, Halifax, NS B3J 3N9, and Devera is the owner of this business. Also a brochure on "A child's voice foundation - where kids come first" Angel Hair for Kids. www.achildsvoicefoundation.ca)

Jordan MacKay is a young adult man who has/had the most beautiful head of long hair. He has dramatically altered his look to make this contribution on my behalf.

I cannot write further. I'm crying and thanking God for my friends and for this wonderful generosity. Think of the child that will benefit from this gesture.

You know today I was thinking how ordinary things have become extraordinary for me. I am so thankful for that gift. I am praying for the child that will eventually benefit from Jordan's wig. I pray that child is blessed with understanding - understanding of generosity which makes this world a better place in which to live.

Love

Emma Lee

What A Way To Start The Day!

Okay - so I think the side-effects are lessening - still there - but lessening. So, up early, walk on this wonderfully snowy winters Groundhog Day. Home. Reading paper. Meditate. WATCH MOVIES - first HIGH FIDELITY AND THEN THE COMMITMENTS! So, I'm going now.

I hope you all have as great a day as mine is shaping up to be.
More news soon. Great plans underway.

Peace today, Emma Lee