..... round 2 week 2

.... and the weekend scored tops in weather and in how I am feeling...

Friday 20th November

Mornings are best for me - time of highest energy and when I am at my best. This morning though, my head is still in a fog and my mouth feels like it is stuffed with cotton. I go out to have coffee and some breakfast with Susan H. and look forward to the company. We talk about whatever comes to mind and we talk about where we are at in our lives. Susan has bought my breakfast and I am feeling guilty considering she is just having a hot chocolate - the espresso machine is down - and that her dental work is causing her some discomfort. We head over to Michael's so I can pick up some items for Christmas. We are always careful to go at a time where there will be the fewest amount of people. I make some purchases and then it is off home.... I am tired and need to lay down. Thank you Susan for a great morning.

Friday night supper is the last one in this series and was brought by Ann L. from Bob Fm. It was a super yummy butter chicken with rice. Poor Miss Lydia was devastated that pizza night did not happen and the tears spilled upon discovery that the foil covered container was not what she was anticipating. Despite her disappointment, she still enjoyed dinner.

Saturday 21st November

It is a quick trip out to the grocery store at 8am with Miss Lydia... we are the only ones in the grocery store as we pick up items for breakfast. I am feeling better and want to make a nice family breakfast. Our new neighbor knocks on the door to inquire as to whether or not I would like some firewood but alas, our fireplace is gas.... days later I realize that the neighbor he was talking to was referring to our fire pit!! Oh, well, the fog in the brain still has not cleared and I still feel rather disconnected. I put on the coffee maker and ask Lydia if she would ask the new neighbor if he would like a coffee - I can see the elderly man working in his driveway cutting wood. A few minutes later, Lydia appears in the kitchen with not only Walter but his wife Victoria!! Max thought he would be having breakfast in bed with the paper but instead, he changed and came down to meet the new neighbors. They joined us at the breakfast table in true european fashion and hugs and kisses later, they were off. Later that day, Victoria dropped off a bottle of homemade Italian Wine. I am not drinking any form of alcohol these days so it will have to wait until Christmas when one of my treatments will be delayed by a few days. Ironically the Saturday paper had a list of the 10 modern commandments and number 2 was - invite your neighbor for coffee.... check!!

The afternoon was spent quietly sewing a project for Max's Christmas gift. He collects Santa Clauses and last year after Christmas he had picked out a pattern from Fabric Land which I found when sorting through my project box. I am by no means an expert sewer, never having taken a course but I bought a machine years ago. Max showed me how to thread the bobbin and I took it from there. When I am finished this journey, Lydia and I will take a sewing course. In the meantime, I am working on finishing all the projects left in my sewing kit. I taught myself to knit, crochet, sew and cross-stitch - and it's nice that I am picking them back up.

Finally a night out to dinner with the family and we go to one of our favorite places to eat - Palasad!! It is our first dinner out in months and the kids are excited for a break away. Laurence and his family show up and ironically choose the table right behind us and is so surprised that it is me tapping him on the back. Huge hugs and a quick chatter to see how each other is!! Oh how I miss my friends at work!! Sam bumps his head and the conversation ends abruptly but we make sure that hugs are given before we leave. Thank you for the lovely words of encouragement from both you and your wife!! xo

Sunday 22 November 2009

The weather has been so amazing this fall!! Unfortunately most of those days for me has been spent indoors trying to feel normal. My hands and feet are still very sensitive and so are my eyes to light. I pull on a warm knit cap over my now very bald head..... last night it felt like I was sleeping on pins and needles as the remaining hair stiffened and then starting breaking off. My knit cap was full of little hairs and what was left on my head was itchy!!! I go outside to do a little tidy up in the garden wearing my gardening gloves..... cannot get injured and cannot use sharp tools. I manage to sweep up the leaves off the deck and William helps to bag them. Just this simple task is causing difficulty and my energy is waning. My Doctor encourages me to try and be as active as possible to build strength and stamina and that is what I strive for every day but there are days where I am too tired to do anything and crawl back into bed. Today I am pushing myself to stay outside and to stay awake. The neighbors are out in force raking lawns and putting up Christmas lights including my husband who is traipsing across the roof hanging lights along the eaves. It feels good to see him happy and joking with the neighbors. Mitch drops by and has a beer with him while he finishes up the little jobs that needed to be done in the garden before Winter. I am relieved that the weather has been so cooperative and that we were able to get things done.

The evening is spent doing miniature gingerbread houses and it was really fun!! Mine was a complete disaster but in the end it still tasted pretty darn good. Max's was perfection and will likely not be eaten!!

I have been in contact with Michelle who is going through her first chemo and was positive she would be heading to work right after..... unfortunately she took a turn for the worse and was seriously ill which required immediate medical attention for dehydration and severe vomiting. My fingers are crossed that she is OK. I post notes on her facebook to let her know that I am there!!

Monday 23 November 2009

I tidy the living room and take a shower. I am expecting a guest at 11:30 from Rogers Cable. Rachel will be interviewing me about the out-of-pocket expenses one can expect from their journey through cancer. Although I work at the local CTV station as an engineer, am familiar with the media - been interviewed quite a few times - it is a moment where many residents from around the local area will get a glimpse of me as a cancer patient. Rachel is very sweet and the interview goes well. I am tired this morning and in the footage I watch later on the air - I can see the physical changes that have caused my eyes to look hollow.... I remind myself that it is only temporary. Thank you to Bob anchoring the news for the kind words of encouragement..... I really miss you!!! Thank you to Scott L. for saying that I am looking good - so sweet!!

Thank you to everyone who brings sunshine in the lives of others and to my friends who continue to make me smile and laugh along the way. To my children who love spending quiet afternoons together making crafts and cuddling in my bed - I love you all so very much. To my husband who shoulders the brunt of my not-so-good days and who still tries his best... I love you forever.

.... chemo round 2 week 1

.... I am in a cloud and am struggling just to get the eggs cracked into the pan... the bile is creeping up to the top of the larynx and is causing discomfort and I take a drink of water to quell the heat. I need to eat something but minutes after eating, the heat picks up quickly and the discomfort of 48 hours of this with little relief is tugging at my nerves. Not even Pepto or Tums helps with this. My senses are all on line and working well - bright lights bother my eyes, even looking at the computer causes squinting, smell - I could smell adhesive tape heating up in the oven the other night (it was on the wax paper but was missed when placed into the oven) when heating the tacos long before the kids could and the cheese Doritos Lydia was eating last night was making my stomach churn and she had to go wash before coming into the room. Amazing that all the senses except the brain are on high alert....

I cannot go to Art Therapy because driving my car would be dangerous to others and with the bright sunlight - no option but to stay at home. I am trying to write a memorial for my friend but find it difficult to conjure up memories from a fuzzy head... reading is also causing its own source of frustration. I have resigned myself to staying at home and crawl back into bed, gobbled down a Pepto and close my eyes. It would be easy to fall into a depression - bar the thought I flip over and fall asleep. Dinner comes by way of Pam M. and I am shocked and giddy when I realize that the cravings for scalloped potatoes and Ham have revealed themselves in her crock pot as a one-pot supper. I am in heaven and dinner is gobbled up by everyone. Thank you so much girl for one heck of a spectacular dinner and to Sue who so generously paid for the ingredients. The children really enjoyed the home-baked pumpkin pie that was included in the meal by Janice P. The chocolate chip cookies are also very good but am not sure who baked them!! I have a bunch of dishware to go back with Pam and lots of hugs and grateful thanks later... my supper Angel is off home!!

Wednesday 18, November 2009 Happy Birthday Oma!!! I know you are traveling somewhere at this point but you have been on my mind all day!! Max and I miss you and GrandDad and hope to see you soon!! We will celebrate when you come back.

Mandi is a wonderful friend and such an angel.... I cannot drive today and she has come to take me to Wellspring on her way to an appointment and will pick me up just in time for lunch. I am feeling really off-center and my insides feel hideous but I know that the sunshine, some company and a class I have been looking forward to for over a month is calling to me. 'Look Good, Feel Better' is a free class complete with an amazing collection of make-up and assorted creams to help you get your day started and a group of wonderful ladies who volunteer their time to teach us the essentials in skin care and make-up application for the lady taking Chemo. With a half dozen of us collected and our products displayed around our make-up stations, our guide selects a beautiful young woman Christy from our group whom she will use as a model. She has a lovely face and sparkling eyes and her youth is reflected in a smooth complexion. Her short hair looks like mine did a few weeks ago and I laugh when she tells me that she has done the same thing I have - cut it before it becomes a nuisance!! She is engaging and sweet and I like her immediately. Her friend sits at the end of the desk and you can see how much she cares and admires Christy and proudly announces that she is her best friend. The lady next to me is not so lucky... she has travelled a ways from Chatham and lives alone - she lets me know that she is not like Christy and I and just feels alone and that she can't do it. I wrap my arms around her and let her know that there is hope. This journey has many pitfalls and I am relieved that she has asked at least if there is any support groups in her area. Vicky is here from my Art Therapy group and I like her effervescent personality and her easy going nature. Although she did not lose her hair, this is still a great course for her to take and she is happy for the company around her. The lady next to her is elderly and wants to talk about the edema in her legs and later the volunteers in the program direct me to her to help her out - I have edema in my arm and it is mild enough that I have not worn my sleeve in a few days.... that was not such a wise choice as I note the slight swelling in the upper arm. Christy is full of fun and enjoys her 'spa' day while the rest of us muddle through the steps with assistance. In the end, we all look fabulous and have smiles on our faces!! We all now have color in our face and chat like old friends over coffee and tea at a little over an hour in the program. On our return, it is wig time and I volunteer to be the model. The wigs all look pretty good and I have fun looking at all the different looks.... amazing the impact of a simple head of hair!! As the program winds down, I speak with the elderly woman and give my email address to Christy. If there is any information I can share, she knows she can contact me anytime. One thing I have learned in this journey - the more information you can get.... the easier the path!!

Time to go and Mandi is waiting for me to go to lunch. I value our time together and am blessed for our friendship. Thank you Mandi for being there for me!! xoxoxo Love you girl!! Dinner tonight is hand delivered by Steve W. and it is a fabulous and divine Bratwurst sausage stew!! A very european dish and one that is very similar to the comfort meals of my childhood.

Thursday 19 November..... dragging my rear out of bed.... only after realizing that I can hear the clock radio which has likely been trying to wake me up for the better part of 30 minutes. My lids are heavy and I can just make out the outline of Mitchel in the doorway. I manage to find my way to the bathroom and I feel the first lurch of my stomach and return to the tums bottle beside my bed. I am bent and determined to get to Yoga this morning regardless!! The brain fog is starting to lift as I yank on my yoga pants and a loose top.... later in class, one of the girls will ask if I have lost weight. I don't think so but then I remember the 5 pounds that I have lost so far and make a mental note (useless endeavor) to weigh myself later. Freedom reigns as the kids head out the door and I grab my keys to go for a drive - I am behind the wheel for the first time in a week!! Yoga is great as always and a time for me to connect the gap between the physical and spiritual self - gave up on the mental part weeks ago :). It is also a time to touch base with the women who want to socialize and talk about things that are key to us. I take the time to talk about the amazing supper club. One of the ladies is a grandma and tells of the teens who live near her retirement home that made her a 'build-a-bear' to help her to feel better. Tears come easily for all of us in our close-knit group and we are all grateful for the special people in our world.

Dinner is served by Mandi and the family once more gets excited at another surprise meal. Chicken and fries fill everyone's belly and the treat that came with dinner is well received by all - thank you to Janice Mills for the homemade candy apples with the lovely name tags and a special thank you from Eryn who was amazed and touched that there was an apple marked with her name as well!!

Chemo fallout and a quick rise in temper has Max and I at odds.... neither one of us realizes until later that this is almost exactly the same time frame as the last blow-out. I realize that keeping the blog and reviewing it will save us from this on our next round and we write it on the calender for all of us to see!! The toxic chemicals do more than kill newly forming cells... it's as if the mind revolts after being put through the chemo fog of the days before and retaliates.... no advance warning signs other than the past experiences. Disaster sorted, discussed with all family members and everyone is on the same page. Life goes on and I spend an hour playing with Lydia before bed.

Another crisis crops up and Max and Will are off to pick up Eryn..... she will be staying the night with us again. I hug her when she walks in the door, Max moves Lydia to the upper bunk in Mitch's room and she surveys us with sleepy eyes and an impish grin. Hugs and kisses and she is back to sleep. Mitch rolls over for a hug and a kiss. Nighty night. Lydia's room now becomes Eryn's and she gets fresh sheets and a warm blanket and a night without worry.

Thank you to everyone this week for the supper club and all the well wishes. Sending out a Happy Birthday to Keri and my mother-in-law - may your special day be filled with great surprises.

.... round two weekend!!

... I was lucky to get into my chemo appointment early - the waiting room seemed unusually quiet compared to the day before. As I was getting up a man walked passed - his head was held high and his hollow eyes scanned me but he never moved his head, just his large blue eyes that were sunk in to a deeply etched face where skin was pulled taught over high cheek bones with little flesh beneath. His body showed the same skeletal outline in the clothes that hung off his frame. I had seen men like this in pictures of a concentration camp and shuddered inside. His eyes captured mine as he passed and I sensed a hint of defiance - I am still here and walking tall! I was weighed the day before and the nurse had informed me that I had lost 5 pounds... in less than 3 weeks. I take solace in the fact that I am eating well and taking care of myself.

I chat amicably with the nurse who is attending me today. I am tucked away in a quiet corner of the suite and my anxiety, although less today, is still there. It is the same cocktail of three chemicals today and is the second of three that I will be injected with. The next series of three according to the nurse has different side effects..... I dare ask and she gives me a sidelong glance. She asks me if I work out and I indicate that I am active when I can and get to the gym when my energy is up. 'Even our most athletic women find that the muscle and bone aches are too much for them to deal with' she says as she packs up the syringe that she has finished injecting. I will do my best and deal with what comes, everyone is different, at least I convince myself half-heartedly. The upside is - I will be done my next treatment 3 weeks before Christmas. I have been assured that they will not schedule me on Christmas eve but sometime shortly after. Perhaps getting a pair of skis or exercise equipment can wait for now :).

A young woman appears and places her things in the lazy boy next to me.... I recognize the look on her face and ask if she is OK. She admits to being anxious as this is her first time and I assure her that the nursing staff is fantastic and that she will be OK. She doesn't get settled before the staff moves her to another spot. I am glad for the quiet as I open my book and quietly read to myself. I am done in an hour and get my things ready to go... funny how I never really started carrying a purse until the past year - after I got my reading glasses and couldn't squeeze them into my back pocket along with my wallet!! It now houses all my stuff, including a new wallet, books, water bottles and a collection of pens and notebooks. I do not write my thoughts down in those notebooks... they are just there to write important notes from appointments and to collect information.

Mary M. comes by wearing her oven mitts and a very hot freshly baked chicken with baguette and salad!! It was divine!!

Saturday - I was feeling pretty good and got myself ready at a leisurely pace when the phone rang. My friend Barry concerned about how I was doing. We were concerned about him and his recent operation of a hip replacement. I have never seen anyone go through so much yet stay positive and upbeat about getting better!! We chat for a few minutes asking about each other when he lets me know that his brother passed away in the early morning hours. How tragic to lose a close sibling and I try to keep my emotions at bay - I do not want to upset him but it is hard, I am going to a memorial in a half hour to commemorate a long time friend who passed on the 4th of November. We end the phone call with hugs and kisses and a promise to get together when I am up to it... he has also been on chemo and clearly understands the downside... no worries, when we can, we will.

Max accompanies me to the memorial. I catch a glimpse of Nancy's daughter climbing out of her truck wearing her military marine uniform. She is stunning and glows with the face of an expectant Mom. She is 4 months along and has left her other 2 at home stateside with her husband. It is hard knowing that her own mother will not get to meet this newest addition and of the little girl she leaves behind that stands with her older sister. I brought little Nicole a gift that Max carefully picked out and a little sleeping bag that I had sewn up for her barbie or stuffie to use. She had her 8th birthday a few weeks back and I used that as an excuse.... I wanted to do more. Her Mom was a good kindred friend to me for 20 years and I will miss her for the rest of my life. The parking lot began to fill quickly and out of the cars poured colleagues of Nancy and mine from the college. Smiles and hugs to my friends Sara and Elaine - it is always great seeing these two gals. There were current instructors and retirees who had been contacted and handshakes and hugs later, we moved off into the Legion to show our respects to the family. One of Nancy's sisters approached me and said that Nancy had spoken quite highly of me over the years - I can safely say that the admiration was mutual. I looked into her eyes and I could see Nancy - the same large blue eyes and I caught my emotions... barely. There was no service or speeches but a simple gathering of friends at the tables provided along with a meal. It was great touching base with John, Ken and his wife, Sara, Elaine and another gal from the college at our table. I miss these interactions, I miss my life!!!

I leave with Max and catch up with Christine - I need her address so that I can send the new baby a gift when it comes and know that I will not lose contact with Nancy's oldest daughter. I am praying that all works out for her little sister Nicole - she is very loved and surrounded by loving and doting family members. xoxoxo

Dinner came by way of Lynn - it was fabulous and the children greatly enjoyed the vegetables over chicken and rice. I ate way too much but enjoyed every morsel. At least this time I was able to come down and say Hi to Lynn!! Thank you so much!!

Sunday - what is there to say about the 48 hour mark...... yuk!! I am in bed most of the day... I am not feeling well and know that my brain is once again disconnecting from my body in a dreamy kind of state. Parts of me are numb but my stomach constantly reminds me to eat something or else!! I spend the day reading a Robert Ludlum book which keeps me occupied but I find that I have to re-read parts again and again.... not able to fully grasp and make neural connections today. I am now remembering why I should read my blog - more of a review actually - heartburn is one of the side effects of chemo - it's as if the liver, under attack decides that a good defense should warrant a strong offense. This amounts to an incredible amount of pain which wavers somewhere just under my ears and persists in hanging out through most of the late afternoon and into Monday morning - I have been up intermittently throughout the night attempting to combat this with something stronger than water and yogurt. Pepto in the pink bottle is located and after one tablet, I have secured the relief I need. The sun is just starting to come up and I will be heading up to bed. Today will be spent at home trying to regain some strength and feel a little normal. I am still happy I have my eyebrows.... for now!!

Thank you to Donna N. for the wonderful Nacho plate - apparently you make better Nachos than Palasad!! That is a huge compliment coming from the children!!

I wish to thank everyone for their lovely notes and messages and kind words of support. The supper club is fantastic .... too fantastic - now my children are questioning my culinary abilities!! Seriously, they are so excited to see what comes to the door and who is bringing it. I wish to send out my very best to Nancy's family and to let them know how gracious they were to their guests on Saturday. xoxo

...... getting ready for round 2

..... I am finally feeling better, at least I have been for the past few days. The weather is sunny and warm for November and lightens my mood as I travel around getting last minute preparations together because I will be unable to over the next 10 days or so....

Sunday November 8th...

My hair has been coming out in fistfuls and I do not like the effect it has on the overall esthetics of my round head. I have asked Max to shorn off the rest using his clippers - I would have preferred a shaver but the danger in cutting and a consequence of infection keeps it to the electric clippers with no extension piece - our intention is clear - remove as much stubble as possible. It looks patchy in places where the hair is barely 1/4" and in others, the scalp is bare. I will wear the little knitted pink scull cap at night to keep my head warm and to act as a cushion for the rigid stubble that remains.

Monday November 9th

It was difficult to sleep... regardless of the cap and the cushion beneath my head - my scalp feels like it has been infused with little needles. The shower eases some of the discomfort but only temporarily... I now rub some gentle lotion on but know that the hair follicles whose normally jelly interior has hardened and the little hairs snap off at the scalp line with little resistance. As Tom explained it... the hair root contained in the follicle and the first 1/4" out of the scalp is alive and planted within a jelly - this allows hair to be flexible.... the chemo has changed all this.

I still have my eyebrows but the eyelashes are slowing falling out and into my eyes... must be careful not to rub. I am now using the Neti Pot twice per day to keep the sinus infection and any nasty cold bugs out!! Going into Chemo with any disadvantage is magnified ten fold and my hopes that this next one on Friday will not knock me down for too long. I went shopping with Brenda M. for fabric today so I could do some sewing projects for Miss Lydia's Webkinz. We have been steadily making home-made articles to decorate her Webkinz house. We pick out three different colors of fleece and leave as soon as we can. Thanks to 10 year old Ava for her inspiration!!

It is eye appointment day and all three children are picked up from school at 3 p.m for a 4 p.m appointment. We are early but the afternoon is warm and so we take a walk to a local coffee shop. We are able to enjoy our refreshments outside the shop and take in the sights and sounds while chatting with each other. It takes a long time to get out of our appointment - the Optometrist is doubtful that Lydia needs glasses and is sure that she is trying to fool him. She is short sighted but according to his previous records, not enough to warrant glasses. She has been shuffled around in class in order to see the board and has been mentioning this lately before realizing she had an eye appointment. He asks her if any of her friends have glasses..... I know my children well and I know he is an excellent eye doctor - in my estimation, a very thorough one. I choose my battle and decide to discuss just filling out a prescription for the glasses and we would see how things go. We make an appointment for February to check how she is doing. With the script in hand and a big thank you, we walk over to Henry to find a pair of frames for her. She loves the first frame that he chooses after trying on a number of them an he carefully adjusts them on her face so that I do not have to bring her back. We head home at nearly 6 p.m.

Sara J. and Elaine B. show up in the evening wearing their Sars mask to prevent the spread of their cold germs!! I thoroughly enjoyed our visit together and although I offered tea or other refreshments, they were steadfast in keeping those things on for 3 hours!!!! xox

Tuesday November 10th

I go to Wellspring today to complete my bowl that I have been working on for a month. I make the final touches while chatting with the ladies around the table. We talk about learning to advocate for yourself while navigating through the sometimes rough waters of diagnosis and treatments. Everyone has a different journey but we all share the same sentiments about sometimes having to push to be heard. This month I have heard two women who told me that they were sure that something was terribly wrong with them and instead of being heard, they simply followed doctor's orders against their better judgement and both were referred to psychiatrists for depression - lo and behold.... they both had stage IV cancer with a poor prognosis after a year of trying to figure out what they couldn't put their finger on. Gwen is not at Art today - she is talented and introspective and also on her last ditch effort with chemo to combat her stage IV. She is receptive to me and we talk but today I am concerned and am wondering if she is OK? Bev is here and I like her beautiful smile... she carries a sadness about her that is tangible - her husband passed away in the summer after being diagnosed with a cancer that had spread three weeks after his diagnosis. The CT scan he had in the spring showed nothing but when his next one was done with a higher imaging rate.... it was undeniable - he would not respond to anything other than morphine and time. He thought he had a sore back which radiated around to the front just under his ribs. She is lonely after 35 years of marriage. We spend more time talking and hope to touch base next week... if I am feeling up to it.

Wednesday 11th November

I think about my Grandfather who was killed while interred in a Japanese concentration camp in the 2nd world war. He is likely one of few who has a common grave containing bits and pieces of the victims of the bombing of their hut and one in the military cemetery in Stanley. Four years ago as part of my research into his death, I came across a man who lived mere miles from my father - a world away from Hong Kong and a few years older than him. I called him at his home in Ottawa and spoke of some of the events of those 20 months in captivity... his mother was never right after her time in Stanley and eventually as she aged, she slipped into a deep depression and passed away with severe mental anguish. His children were never interested and he found solace in the fact that I was. George Stopani-Thomson (my grandfather) would be mentioned in a book later written by a man named George Wright-Nooth titled the 'Prisoner of The Turnip Heads'. He was a police officer who diarized the Stanley concentration camp and it's goings on. He passed at the age of 85 on June 12, 2002 - just before I had an opportunity to contact him. I found this information through an incredible resource by the name of Tony Banham who quite by accident found a military munitions round in a Hong Kong hill and began a journey of discovery that has drawn people together from around the world, myself included. He has documented his discoveries and contacts which he maintains monthly on a website http://www.hongkongwardiary.com/ He even went as far as to photograph my Grandfather's common grave for me and forwarded it via email.... finally, a connection. I read the book he recommended but he apologized in advance that my Grandfather's name was spelled so badly as to not be recognized.... after 57 years, I can still make out his name on the gravestone in a grainy photo. For such an accurate and unbiased account of the goings on, George Wright-Nooth wrote the book after an illustrious 29 year career based on notes he kept hidden. During his internment, he was aware of the radio that was made in camp but was unaware of who had it and how they had made it..... Mr. Wright-Nooth - through other sources... it might have even been my Grandfather whom I paid homage to today and said a prayer. One day I will submit all my research to our family scrap book which I will leave to my children.

I attended the last immunization clinic offered to immune deficient patients and their families at Lucas Secondary. This was a relief knowing that we are all now H1N1 ready!!

Miss Lydia and I have a dinner invitation to Mandi's house and Lydia is ecstatic that she will once again get to be creative and was clearly not disappointed when the arts and crafts box was located and looted!!! We gave Ava a little Webkinz sleeping bag I had made earlier in the afternoon for her. It was great chatting and spending time with my very dear friend. Love you Mandi and thank you for always being a wonderful host.

Thursday 12th November

I pick up Susan H. early this morning because we are going to the hospital and she is keeping me company. I have a blood test today to check my cell count in order to make sure that I am good to go into my second round of chemo.... I have to wait for a requisition form which has not been filled out and when the receptionist goes back to get it filled out after I inquire 20 minutes later I offer to give her a hug which she accepts happily. We sit together in the blood lab and admire out loud the incredibly beautiful smocking project that the elder lady next to us is working on. The delay of a late appointment will cause a long wait for my next appointment but we manage to speak to a number of people sitting around us and I am numbed by their incredible journeys and their ability to recount all of it in a condensed version. People want to share their stories and the gentleman next to me is in his 70's and has been watching me for some time... he slips into the chair when it is vacated and asks me about radiation and lets me know that his wife is terrified... she cannot speak to anyone about her journey but he desperately wants to and wants to help her. She is seated on the other side of their grown daughter who is listening intently to our conversation and I assure him that it is fine and that I will take radiation in 3 months. We talk for quite some time and he smiles and thanks me for talking with him. His wife is aware of our conversation but does not acknowledge us and continues to stare ahead... Susan is immersed in conversation with the woman next to her. We had spoken to a couple earlier - the wife has had rods put into her arm and both thighs.... she has bone cancer which stemmed from her breast cancer. The stories are endless and as individual as the people traveling through it. I see a woman walking towards me and I smile as I stand to greet Gwen. She smiles back and allows me to hug her. She will try to come to Art next week.... she is not feeling well but hugs me back when I leave to go for my appointment. I have waited 3 1/2 hours to see the nurse whose friendly face and interest in how I am is genuine. We chat for 20 minutes and she lets me know that I am good to go tomorrow and that there will be no need to change or increase any of the anti-nausea meds or steroids. I come out to pick up Susan and we are off to lunch. What a spectacular day as we park downtown and walk over to the optometrist to pick up Lydia's new glasses from Henry. We then walk past Victoria Park and take in the sights and sounds of the fat squirrels racing around in the few days left of warmth and sunshine as the feel of Winter will soon chase them up into their respective leafy nests. The lights are being strung throughout the park. The day has flown by and I drop Susan off to the car dealership and head off to do the final tasks of library book drop off and renewal on a Robert Ludlum novel and a trip to Michael's craft store for some needle crafts for Miss Lydia to do. I am now tired and head home ready to face tomorrow.

Thank you to Brenda for helping me pick out fabric. To Sara and Elaine who sat with me for hours never wavering or removing their masks to prevent me from getting their colds.... so incredibly thoughtful and sweet. Thank you to all of you who shared your journeys with me and I wish you all the best. I am so blessed to have enjoyed the last few days of sunshine and warmth in what feels close to being myself. Thank you Mandi for the friendship we have and to Susan for the friendship that is blossoming. I wish to express my deepest sympathies on the loss of a mother, sister, aunt, Grandmother and friend - Nancy, I will miss you the rest of my life. xoxox

.... taking care of myself

.... means that I pay closer attention to the changing needs of a body under attack by chemo in a time of the H1N1 PANdemIC......

It is really hard to keep a sense of panic at bay when all you hear is the H1N1 is coming..... and the relationship to it's deadly predecessor the Spanish Flu of 1918. The first wave was relatively mild which was quickly followed by a much more aggressive one.... flash forward to London in the year 2009 and a health care system that runs the gamut of confused, frustrated and lacks enough vaccines .. the Spanish Flu deaths were mostly attributed to spinoff infections and poor hygiene practices... hence the incredible amount of tax funded pamphlets and advertising. Being immune deficient means that any cold or flu can encourage any number of spinoffs despite the obvious strain it causes to an already challenged system. I am in between my treatments and can only have my flu shot just before my next one. I brought my children in on Thursday afternoon to a clinic available for those with immune issues or who lives with one and although the line-up was long, it took less than 40 minutes to get them through it and I was impressed by their organization and quick processing of paperwork. Despite the fact that there were screaming children everywhere, mine quietly took the needle much to the surprise of the nurses and after, we sat and waited the 15 minutes before leaving. Max received his a few hours later.

Chemo is an aggressive opponent to all body functions and can put a body into menopause, become hairless in a matter of weeks, kill an impossible to kill wart - the one on my finger has held on for years after many months of wart killer.... I am now watching it shrivel and die within two weeks of my first chemo. I often wonder what else it is killing besides my mood these days....

I am used to being upbeat and positive and for the most part I still am but there are times when I am frustrated by my lack of energy and of course the lack of control in my life.... I love routine and goals. I am highly motivated and will tackle just about anything with zest. With a blank schedule I have been able to fit in a yoga class and art therapy at the Wellspring center - these are the events that give me spiritual energy and an opportunity to touch base with other women that are going through similar situations. They are a great resource and coffee afterwards in the kitchen draws more personal experiences. I missed last week's Art Therapy and the woman who sits beside me was quick to inform me that no one spoke and it was so quiet - 'we missed you!!' she tells me and the group once again sparks with life and the chatting and laughter is infectious. We are drawing a Garlic and showing what each of the segments represents.... I have Friends , Live, Love, Laughter and the final one is Family - it is the largest segment and when you tip the picture sideways to read the words, it is the foundation. My husband and children are my world.

Thank you to Bruce for dropping by on his way to work to bring us some wonderful home made treats and a gift. We have worked together for many years and I am eternally grateful for your support, friendship, sense of humor and the hugs!! You are a wonderful soul and I miss going on road trips to repair the microwave link or working on a complex repair with you. Our conversations cover the gamut and your sage advice with child rearing and life experiences have been invaluable. I miss you so much!! Thank you.

Saturday 7th November 2009.

Traditionally, Max makes coffee and a snack on Saturday mornings and then we go through the flyers and plan our day while sitting in bed.... our discussions are usually a recap of the week or what we want to get accomplished. This morning Max casually mentioned that my hair still looks really good and maybe I won't lose it after all..... he went to pick up Lydia while I was getting ready for my shower. My hair over the past few days has been getting courser and my scalp a little more sensitive. Running my hands over my hair and watching as the hair begins to fall into my lap is a clear indicator that my hair will not be staying much longer. My eyelashes look like they are following suit and I wonder if my eyebrows will be next. Not everyone loses their eyebrows but I know that there are some women who have and they never fully grew back. I have a pencil that will be used to draw them in should they decide to leave. Next month I will be attending the 'look good, feel better' program and I am sure that they will help me with any issues of lost eyebrows!!! Max and I chuckle when he gets back from picking up Lydia who has been on an overnight with her Brownie Pack..... he smiles at me and says that he's not worried and I smile back because I am not either. I am sitting at my desk blogging and as William comes by with the vacuum, I ask if he can vacuum my head... he gently passes the nozzle over my head - wonders if maybe I should just shave it off as he notes the sound the hair makes as it hits the inside of the hose on its way to the canister in the garage. I put my hat back on my head and continue with my blog... maybe later.

I check my facebook and note that I have mail in my inbox.... I open it and begin reading and am confused and need to read it again..... and then it dawns on me, my friend of 20 years has passed away from a viral infection in her heart while she slept overnight on the 4th of November. She was strong and resilient and had a life filled with challenges. She has two grown daughters and leaves behind a third - 8 year old Nicole who by all accounts is truly a miracle. Nancy has been through so much in her 51 years and I weep for the loss of a truly incredible woman. I called Sara - also a friend and colleague and her boss in hopes that we could inform all of her friends and colleagues that would want to attend a memorial service. I love you Nanc and will miss you!! Nancy E. Swartz 7 June 1958 - 4 November 2009. May you rest in peace my friend.

... hitting the wall

..... wether it is the abrupt change in direction for the hormones or the excruciating sinus headache that kept me awake all Friday night with no relief....

I kept checking my temperature throughout the night on Friday checking to see if I was running a high enough one to warrant a trip to the hospital. We called the on-call Oncologist on Saturday morning but my temperature was .5 of a Celsius degree off which meant it was not a Febrile Neutropenia (FN) which occurs with temps over 38 degrees C. Max had purchased an easy to use and quick Vics oral thermometer which shows in color where your temp is making it easy to read in the middle of the night. A temperature that exceeds 38 degrees when a person is in Chemo treatment can easily lead to morbidity or mortality. The cancer unit here in London will immediately admit and administer antibiotics once they determine the type of infection that is causing the sudden decrease in an already compromised immune system.... FN is a direct result of a white cell count that is dangerously low. That would explain the Neulasta shot after 24 hours when the chemicals have washed through the system, it speeds and assists the production of white cells to avoid FN from occurring in the first place. It is never recommended to take fever medication while in Chemo which explains why I put up with the pain which started late Thursday night and progressed into Saturday morning. When I could ascertain that it was not FN then I took a cold and sinus pill and emailed my doctor who promptly returned an email with confirmation of a prescription antibiotic that she called in. It is dangerous for me to go to an ER or a clinic - even though I would be put at the front of the line - I would still be in a waiting room with flu and cold patients.

I was lucky enough to go out with Susan H on Friday morning for a quick jaunt for coffee, library books and enough supplies to make the job chart for the pantry door. She carefully wiped things down like tables and shopping cart handles so that I could feel safe that I wasn't going to pick up any germs. I am not paranoid but now deeply aware of my predicament through the flu season. We went at a time where very few people would be in the places we needed to go. There was one person that unsettled Susan though.... we were in the Library with possibly ten people sitting in various areas at the tables provided for studying. We rounded the end of one aisle only to been stared down at by an older man sitting at one of these tables. I bid him good morning as we passed and he grumped something which I couldn't make out so I turned to face him and said 'pardon me' at which point he grumbled something and glared at me and I again indicated that I had not heard him. His response was short and nasty.... this is a Library blah blah blah..... I bid him a good day and turned to look at a very shocked Susan. His nastiness had unsettled her and she mentioned that perhaps that was why he was sitting alone. Never know where someone is in their life's journey... It's not personal just a snapshot in someone's day. Thank you Susan for taking time out of your day to spend it with me and for looking out for me. xo

Saturday was spent in bed trying to recuperate and I really wanted to partake in Halloween which is one of my favorite yearly events - it really should be a national holiday.... ahhhh the token of the mid-fall season that ushers in shorter hours of daylight. I remember the excitement of my youth..... my parents emigrated from Germany in August of 1965 and were quite perplexed when decorations, costumes and candy boxes started showing up in the local grocers..... my parents spent a few nights making our very first costumes - my mom was pregnant with number 4 and I was too little to go but my older brother and sister went out. The first one I remember, my parents made witches costumes complete with authentic looking cardboard cones with wide brims and sporting a bunch of stars....it was 1969 and we lived on the outskirts of Old South. I waited anxiously at the window where my mother had lit a candle in the jack-o-lantern. for my father to come home and for night to fall before we could go out and it was magic!! They used to sort out our candy and put them in tins to be dispersed over a period of time and in a fair manner.... that only lasted until I was about 7 and then it was a swap meet of who would get traded the historically crappy molasses chews which were wrapped in orange sporting cats and jack-o-lanterns. I have not seen them in about 5 years now and I miss them in a really nostalgic way.... I actually acquired a taste for them and minded less and less when my brother would swap for the good stuff. Now it is my children's turn and I am so proud of Mitchel who really wants to take Lydia trick-or-treating by himself.... it seemed like yesterday when I was pulling him around in the wagon jammed in a costume and fussing every time we stopped and William running pell mell down the street - a three year old who clearly understood what to do!! Every year I would stand farther back from the front doors while they ventured forth in their own independence and gently reminded them to say please and thank you. I take the traditional pics and Lydia hams it up for the camera. I smile and kiss her as she spots the first children coming up the road and she tears off waving bye Mom!!! Mitchel is right behind her and Will heads out in the opposite direction - he is dressed up but will not be knocking on doors this year..... he is too old now :(. Tucked away in the dress up trunk are 12 years worth of costumes.... this will be my first time in 13 years that I will not be accompanying my children because I am too sick today. It is a Saturday night... full moon, spooky trees which earlier in the day bore leaves until the relentless wind and rain ripped them away. It is crisp but dry and you can see the dark wisps of clouds skirt across the moon.... pure MAGIC!!! Lynn T. has brought over a pot roast in the afternoon and it hit the spot after a long afternoon nap. Thank you so much!!!

Sunday I am still sick but managing the sinuses. I find myself out of habit now early Sunday morning before anyone is up to go online with facebook. Rebecca IM's me to see how I am. Over a few minutes time, we make plans for breakfast and she hits up the grocery store and Tim's on the way over. After cooking a huge breakfast she gathers her things and heads to the door. She is the boys paternal aunt and has 'adopted' Lydia as her own and with lots of hugs later she is off to church. Thank you so much Beck for your company and the great breakfast choices!! Love you!! I am tired but feeling better and I don't want to spend another day in the house. A quick call from Mandi and we have made plans to visit her in the afternoon. Paul M catches me on my way out the door to Mandi's... climbs down the ladder he is using to do his bi-annual eaves cleaning and hands me the still warm dish of Shepherds Pie. Thank you so much for the dinners you have provided us with and the home baked chocolate cake that Shelly's friend has given to us. We are off for the first drive I have done since before chemo and I feel liberated and excited to be out!!!! Lydia is excited to have a playmate and spends the afternoon playing dress up and stuffies. She is inspired to making her own house with homemade crafts for her stuffies. It is my third outing since my chemo 10 days ago and I cozy into the couch with a tea and great conversation. I am eternally grateful for our friendship. We get home and Lydia ropes Max and I into drawing and coloring pictures that will adorn the walls of her stuffie house. Thanks Ava for inspiring us, you are so much like your Mom!!

Monday... I am doing phone calls trying to get signed up for a program sponsored by Pharmaceutical Amgen Oncology called the Victory Program. They can assist with prescriptions related to oncology medicines. My benefits will change in January and as far as my insurance company is aware of - I am currently covered for 100%.... Victory Program will offset the costs that the insurance will not cover in the new year. What a relief... it's the time at which my pay will drop fairly significantly as I move into the long-term disability portion of my journey. I have a file number which the pharmacist will use when my script is filled and will pay for it using the Visa card that the Victory Program supplies them with. They can cover emergency cases when insurance is delayed for any reason and will cover up to 100% for those that cannot afford these life saving medications.... without the Neulasta.... the sinus infection would have been significant. Lydia has returned from her dental appointment and she is woozy from the gravol and is uncomfortably numb. It turns into a day of arts and crafts and we spend some cuddle time... I am happy for these moments that come more and more. She tells me how much she loves me and how wonderful her day is. Montea comes with tonight's supper- a wonderful legume chili which we pour over the meatloaf that Kelli M dropped off on Saturday afternoon. Thank you for your visit Min and to our friends at Bob who have kindly offered to put money towards the groceries used to make future dinners. I am truly a very very lucky woman to have such incredible friends who just amaze me. I will see you soon Min!!

I would like to add a special note to Ann from Bob FM and her daughter Mariah (love that name!!) who put together an amazing lasagna for us this week and for the little card that we found!! xoxoxo

The calls over the week end from family and friends who are thinking of me are so wonderful. I may not have been able to fully enjoy Halloween this year but have made a vow to pull together a party for all our friends next year complete with decorations, scary treats, bobbing apples and I will see if I can find the nostalgic candy of years gone by. I hope you all had a wonderful time and rediscovered the magic for yourself..... to Celine and Melissa who are expecting your first.... may your next Halloween bring back your best memories when you dress them up!! Sending out love and laughter to everyone. xoxo

.... Marita's supper club

..... I am constantly in awe of the people in my world who are so wonderful that words can barely begin to describe the gratitude I am feeling these days..... and to those individuals that have offered support and kind words that I have never met but who are aware of my plight...

I finally managed to get through almost an entire day without having a nap!!! I am feeling better but nowhere close to being myself yet. The fatigue is still a constant reminder and pulls at me when I push myself off the couch to make a cup of tea. My cold is still hanging in and I can feel the tickle in my throat... I can safely say that it is finally abating but taking its time in doing so. Debbie D. has emailed me through facebook the night before last and would like to bring supper for my family and I am grateful for the offer and jump at the opportunity for a guest. She arrives in the afternoon and expertly finds a spot in the fridge for the Chicken casserole that she has made... she announces that her kids didn't like it and I grin... so like Debbie in her very down-to-earth way!! xoxo We get a chance to chat and then she is off after hugs and best wishes. You are a total sweetheart with a huge heart!! Later in the afternoon, my spidey senses tell me to check my work emails online, which I do anyway every few days to clean it up, but today the feeling was a little more pressing....

.... and there they were, a series of emails naming 8 co-conspirators who have decided to organize a 'Marita's supper club'. Each person has agreed to provide my family with a meal one evening of the week starting with Tuesday 27 October..... I sat in my chair so stunned and did not realize the tears had started and were now spilling down my face in torrents. I am speechless and when Max returns my call, I cannot speak through the emotions and he waits patiently on the other end while I wipe my tears and find the words. He is silent and you can hear his words waver as he quietly says how very fortunate we are. One less thing for Max to have to coordinate and he is deeply grateful.. working two jobs and staying up late to mark a few hundred projects has left him with little time and energy. He never complains. Our first dinner comes by way of Bondi's Pizza from Mandi - the children were ecstatic and it hit all the right spots... thank you my friend.... for everything. oxoxoxoxo

I take bedtimes with Lydia so that Max can mark his projects and get to bed at a reasonable time. Our meetings are always in my bed these days and Lydia finds comfort in snuggling in next to me while I read to her. It is something we have always done - it is a sense of comfort for her. I have more energy tonight and she kisses me often and lets me know how much she loves me. She tells me that she knows I will do my very best to get better and that she knows that I love her no matter what happens - she even likes my hair and makes every attempt to style the 1/2 inch sticking up but no clips will stay in. Oh well, at least she can wash it and makes plans to get me in the bath tomorrow night. I fall asleep before she does and her little voice wakes me up with a jerk a number of times before I tell her to go to sleep...... I am too tired to open my eyes and her little hand finds its way to my cheek and gives me a pat.... I love you mommy, no matter what happens......

Mitchel is getting picked on at school... I think more than anything, he is painfully aware of his emotions and has always worn them on his sleeve... the kids might not know what he is thinking but I am sure they sense that his guard is down. I have written a note to his teacher and her lovely card evoked yet more emotion as she promises to keep an eye out on him and will let me know how he is doing. The staff at the school all know and they are watching over my two youngest children. Mitchel should hopefully feel more confident as the school year progresses and sees that he has the support in place that he needs.... this will be a growing up year for him in many ways.

William is still sick but maintains the mask while outside of his room and around others... he understands that he must be diligent. He comes to talk to me on Monday evening and lets me know that his girlfriend's mother has fallen off the wagon again and that she is taking it out on her and her brother. The brother will be taken in by Dad who lives a few blocks away but she is on her own. No problem Will, she can stay with us as long as she needs. Her father gives permission and her mother calls Will to confirm that she is safe. Poor soul, so young and just needing some stable parents who are mature enough to handle their own lives for a change. She comes to the door crying and I hold her for a few minutes before getting her some leftovers to eat.... we heat her up something from the fridge and get the rest of the family to help make a bed for her and get her settled.... I am heading for bed. No matter what is going on, I am still there for my children.

Thursday 29 October.....

..... going to Yoga class this morning despite the fact that I still feel wiped and my nose is still running. I use the Neti pot and then climb into a hot shower. I look at my face in the mirror and realize that the skin is looking grey around the edges and mottled with spots across the forehead. I have deep rings under my eyes.... I did not sleep well and feel a little edgy. My sense of smell has gone into overdrive and even anything with a slight scent is giving me a headache these days. My hearing too has become as sensitive to sounds as my eyes are to light. The hormones are clearly into overdrive and I feel weepy one minute and angry the next..... this will not bode well later in the day.....

Yoga was wonderful and the girls thought the hair looked great. I was able to feel a sense of normalcy for the first time in a week and stayed to have tea and chat with them after class. Soon it was time to go home and grab a bite. I am hungry a lot these past few days.... voracious more like it. I will eat a portion and find myself getting more food a short while later - apparently this is normal.

I have managed to do light household chores but these tend to tire me easily and just going up the stairs gets me winded and I have to sit down. Not exactly the high energy status I am used to having. Doing laundry yesterday was a day long task along with light cleaning.... I have noticed since I have been unavailable for the past week that things are piling up fast and not much is getting done around the house. I am grateful for the supper club that has come to our rescue because by the time dinner is ready to be made.... I am ready for bed!! So the weepy eyes leaves quickly this evening and the angry eyes show up..... will these mood swings settle soon? I am upset over a few tasks that I had asked Max to do and he has forgotten even after a number of reminders..... instead of a reasonable conversation.... I begin to rant. Somehow, I feel forgotten and not important as I recount the simple items that needed to be addressed while I was incapacitated. It seems ridiculous to Max as he attempts to tell me that I am being unreasonable.... so now I am unreasonable and the point I was trying to make - I really need to know you are there for me and not ignoring me.... fell on deaf ears. Like all arguments that are heated.... there are always two sides. I would have been OK had it not been for the phone call that followed only a few minutes later. I did say that I did not really want to discuss why I was so mad or why my voice was now an octave higher but instead of backing off and calling back - the advice being dispensed on the other end and the immediate need to defend her son pushed every other button I had left inside..... only one thing left to do - I promptly hung up. I just needed support and an apology for not giving the dog her medication for a few days and for not doing the laundry, dishes or cleaning the bathroom that I need to use everyday...... I will be back on line, but right now because I am not, please just help without having to be reminded every day. I guess I am not Super Mom this week and now I know that for one week out of three I will be out of commission so I will devise a handy little chore chart for everyone to look at and note that they are not merely suggestions. For the other two, I will do as much as my limitations will allow for. As for my mother-in-law..... a few days of cooling off will hopefully bring an understanding of maybe the crazy life I am living right now and that I don't need advice.... just your love and support of which you are so good at.

Thank you to the Supper Club for the meals we have been receiving like clock work.... they have helped us tremendously. xoxoxo Pam, I didn't mean to get weepy when you popped in to bring your yummy dinner but I was quite overwhelmed with the love you brought with you as you deposited the dishes on the counter. Thank you to everyone who has offered support and kind words along our journey. This illness has caused stress in our daily lives and affects each one of us in our household just a little differently but we are not alone..... Thank you so much!! xoxox A special thanks to Max for doing the little things for me this morning that I cannot do myself and for understanding that there will be pitfalls along the path and that for better or for worse we will weather the storms that come our way together. xoxo <3