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Saturday, December 5, 2009

.... round three week one

....... I am used to being in the chemo suite by myself surrounded by patients and a busy nursing staff but today I am being escorted by my husband. It is early in the morning and there are few people milling about but Max notes as we leave 1.5 hours later that the place is filling up... should be here in the late afternoon I tell him. He loves to joke with the nurses and is being spoiled by the volunteer passing out some of his very favorite dutch cookies!!

The nurse in training has done a great job inserting the needle for the syringes that will be inserted into the special click lock receptacle on the IV. She takes longer to push all four of the syringes than the seasoned nurses around her because she does not want to go too fast. She will be working at the hospital in Wingham where she is from and as we talk, she tells me that her husband used to be a tech at CKNX radio. It's a small world. We are done and another nurse comes by to remove the needle and has me apply pressure while she moves off to get my info punched into the computer. I pull up the gauze a few minutes later and note how odd it is that the skin pulled up and then completely collapse into the hand. A few minutes later while waiting at the pharmacy to pick up my medication, I note that my wrist is burning and it is beginning to swell. I return to the chemo suite where one of the nurses gives me a heated gel pack and instructs me to keep heat on for the next 24 hours until the vein stops its spasm. I get home and realize that the swelling has reached a proportion that is causing pins and needles in my hand and the wrist bone is no longer defined. I have a really bad feeling that the IV was inserted through the vein and then back into it....

Max took Mitchel and Lydia out for the afternoon to hang out and they had such a great time while I lay in bed watching HGTV online and doing crossword puzzles. Since I had to change the heat pad often on my wrist, I was unable to really take a nap - besides, all the steroids they give you make it so that you can't really nap well for the first few days. My heartburn/reflux was so severe during the second round of chemo that I asked for something to help me out this round.... amazing that they have a pill for everything!! I feel like a junky surrounded by my pill bottles.

Tonight Mandi drops off a totally yummy comfort food duo of Shepherds pie with salad and rhubarb/berry crumble courtesy of Janice Mills xox!! Thank you so much :D I heated up desert in the microwave.... hmmmm the best!! Thank you to my good friend Mandi who had a car load of stuff to drop off at Walmart - yes, we will get together soon when you are not always on the go!!

Lydia loves to watch the occasional movie in her room when we are playing something with a rating that she should not be watching. Usually we set up the laptop upstairs in her room but tonight we set in up in mine and the two of us cuddled in to watch the latest Micky Christmas stories. We just had so much fun - she kept saying how much she loves me... these are the moments that I hang onto and I smile back into her face and tell her how much I love her. Mitchel joins us later for story time and the two of them take turns reading the story about the Christmas bear and all his woodsy friends. Her reading has improved immeasurably and I have been fortunate to be home in the evenings to help her. She is really showing an incredible amount of maturation and independence and is quick to help out when she can. She can maneuver her way through a computer quite competently as do her brothers. Kids are crazy smart when you let them do things for themselves by themselves... of course some things with guidance helps....

Thank you to my sister-in-law Marleen for the Christmas parcel that arrived in the mail. She is always so great about sending things off in a timely fashion... I will be lucky if I can fill out my Christmas cards this year... and the annual family newsletter - pretty much summed up in my blog :).

Saturday 05 December 2009

Before bed last night I cut the toe stitching out of one of my wool/cotton blend socks to use around my wrist to keep it warm through the night - which works out quite well - it has enough compression to keep the swelling down and keeps it warm without me getting up every hour to reheat it. This morning it is feeling better and the bruising is subsiding. I am waiting for the nurse to arrive to give me my Neulasta shot but I note the time and we are now passing the 24 hour mark and I am getting nervous.... I have already left messages for my regular nurse on Friday but with no return phone call and no phone call this morning - I get on my Blackberry and instant message Mark - would you be able to give me an injection on your way to the Children's Christmas party if the nurse doesn't get back to me? No worries he says and promptly drops by with the kids at noon to give me the injection!! The kids are so great and end up hanging out with mine who are also heading out to the party when we are finished with the task at hand.... I had to smirk when he talked me through the entire procedure and I was deeply grateful for his experience - think he did better than the nurses for sure!! Thanks so much Mark!! I am not going to the party that I helped organize because I am too sick to go. My stomach is doing twists and I can feel the fatigue pulling at me. Max ends up sending me pics via his iPhone so that I feel a part of the activities. Love you sweetheart. I manage to get some down time in bed while sitting up. Thank you to Annarita for being a wonderful host to our guests when they arrived. xox. A Nurse calls in the early afternoon and apologizes for being late. We talk for a few minutes on the phone and she wants to come and look at my wrist..... no, I am good I assure her. She lets me know that I can call anytime that I need help and although she is not my regular nurse, she can come out if need be.

Dinner comes by way of Paul and Shelly and wow what a great dinner!! The chicken was perfection of which the leftovers were made into sandwich meat and chicken soup - yum!! Salads were yummy and so was the cake!! Thank you so much!! Max even ended up having some dinner before going out and thought it was amazing. We were spoiled.

Max headed out to his company Christmas party and felt a little out of place with me not being there.... I would have if I could have. Sending out love and hugs to Kathi and Glen for the invite!! Wishing everyone at Signature a wonderful Holiday Season. Max sent me a lovely picture of Kathi blowing me a kiss... right back at you beautiful lady - I really miss your smile and your sense of adventure!! I sent Max a pic of Lydia and I laying in bed watching the 'Polar Express' so he would know that we were there with him. He arrives home just as I am getting up to go to the bathroom. We sit and chat for a bit and he is emotional - he has missed me and I, him.... this is the part of chemo that really sucks... We cuddle in and talk until we fall asleep. There are many nights where we hold hands and fall asleep talking - we both take comfort in this physical connection.

It is St. Nicholas day and the children's boots are filled with chocolate and special treats from across the world... a place where my traditions and myself were born. It is important to pass on these traditions to my children - and we tell the stories that we were told all those years ago.... It is the beginning of the Christmas Season at my house.

Sunday 06 December 2009

The kids found their boots and as tradition would dictate... they all piled on our bed with their boots in tow pulling out the treats one by one with delight. It did not take Lydia long to part the chocolate from the foil and gobble it down while quickly unwrapping the next one - at least she stopped long enough to discern the pine-cone shape from the ball!! It is nice to see that the kids are enjoying themselves and we have some normalcy in the household. I am feeling so bad this morning but am grateful that the acid reflux is something that I do not have to deal with!! The stomach demands to be fed as it begins to roll in a sickening lurch and I am downstairs making toast and light decaffeinated tea. I drink about 12 glasses of water and tea per day to flush my system but when my stomach lurches, even water feels gross. My belly will stay puffy for another week until the intestines start to function properly - I find drinking the probiotic yogurt and a scoop of benefiber in my tea tends to do much better than any pharmaceutical stool softeners. Max is a little hung over this morning but decides that despite the pain in his shoulder that he will get up and get the outstanding chores done while he is still mobile - something tells me that he should have stayed in bed. Emily Brown drops by in the afternoon to deliver some dishes for my Cerebral Palsy donation in the morning. She looks great!! The sunny and snow free weekend is a great surprise for her long drive home. My friends in the States are not so lucky as reflected in their status reports..... some have had fender benders and in the Dakotas, they are gridlocked by snowbanks.

Tonight's dinner comes from Mary McCready and is a real delight for the children!! Yummy pork loin with cinnamon sweetened apples draped across them in a lovely sweet sauce, roasted potatoes and Brownies for dessert. Thank you so much for your lovely dinner and your company. xoxo

I want to wish Mandi Fields a very Happy Birthday today and sending you so much love and hugs and a huge thank you for being such an amazing friend!! We will get together soon to celebrate your special day. xoxo

Monday 07 December 2009

It is a restless night for both Max and I. Most nights just after chemo and usually for a week, I have night sweats and find myself in a constant battle between ripping off the sheets and my nightcap and then waking up to relocate my nightcap to keep my head from freezing. It is usually covered in a damp coating of sweat and then cools quickly when the cap pulls off as I move around. It is difficult to sleep after 4 am when my stomach takes its predictable roll and begs to be fed. I travel downstairs to find my stash of crackers and put on the tea kettle. I know that now I am out of bed, Max will finally fall asleep. He has become used to my nocturnal waking and seems to have found himself on the same schedule. I will return to bed when he gets up for his shower. He has been taking my hand throughout the night and kissing it...... it is an emotional journey for both of us and I can see that it is starting to take a toll on him. I will try to help do some laundry today and tidy up so it is less of a burden on him. I love you so much Max... hold on, we will get there!!

It has not been a particularly good day and with the lack of sleep tugging at every cell, the best I can do is to lie upright in bed and hope for the best... there is a sense of boredom that sets in with a lack of activity but not feeling well quells that notion quickly. I will try to get out to Art Therapy tomorrow thanks to the assistance of a friend who will drive me there and pick me up.

Dinner arrives in the afternoon with a big smile and a hug from Montea.... Steve Stax from Bob has made a yummy dinner of pork loin w/mushroom sauce, sauteed vegetables and roasted mini potatoes!! It was fab!! Thanks to Min for the delivery and the hugs!! You are looking absolutely incredible!! It is time for bed and I manage to get in an hour of dozing before the kids show up - they kiss and hug me and I gratefully pass out for a few hours before dinner.

I am not well enough to play with Miss Lydia and so she and Daddy play the Wii by themselves tonight while I sit upright quietly trying to keep the stomach from rolling... my head aches, I am tired and I want to lay down so up Miss Lydia and I go to read books. She is reading to me these days and pats my head in between page turning. She says she loves me about every third page. She doesn't like seeing me this way and expresses her feelings openly as she reaches out to give me a kiss and say good-night. 'Love you baby, always and forever', I tell her. She heads off on Daddy's back for the trip to her bed. The boys come in a few minutes later excitedly chatting about a You Tube video that they want me to see.... they move on when they realize that I am not well and blow kisses to me on their way out. We all do not like week 1 of chemo....

Max and I spent another restless night and I have left the bedroom to allow him to sleep, if only for a few hours. He has a lot on his mind and cannot sleep these past few weeks. He assures me that he is alright but I am deeply concerned.... he is usually the one to sleep no matter what is going on and I hope that it resolves itself by this weekend. His teaching for the semester is wrapping up by early next week.

I call Max's Dad this afternoon... always a great person to talk to. He empathizes and is quick to lend a shoulder. We half-heartedly joke and agree that the toxic sludge moving slowly through my body is wreaking havoc with all my systems. We talk about Christmas and we both know it will be contingent on how I am feeling. Last year I hosted the family Christmas - something I totally enjoy and was planning on doing this year.... OK, next year! Love you Mom and Dad and I miss you terribly.

Tuesday 8 December

I am able to go to Art Therapy today..... suffice to say that I am ill and clearly not myself. It has been another rough night and with the night sweats and stomach rolling.... my attitude needs the positive energy from my girls today!! They are great and are quick to support me by mentioning that I rarely walk in without a smile and that they are happy to see me. We get to draw the light we find within us and my first attempt reflects how heavy and weighted down I am by the swelling in my midriff from tons of water and food and little movement.... so the drawing looks like a Buddha!! My second attempt is far more feminine and in keeping with my belief that the soul shines through wherever it can. I have to leave right at 1 pm... I am meeting with my good friend Mandi for lunch - Happy Birthday again my dear friend and thank you for everything. xox

I get home feeling completely out of sorts with myself - cotton mouth and a head filled with sawdust. There are messages on the answering machine and one from Tracy at Lymphediva.... I have to play it twice and I realize with a shock that she and her daughter have sent my daughter a package weeks ago and needed to know if we had received it!! We have not received it and I feel terrible for Tracy and her daughter - what should have been a wonderful surprise is now spoiled by a postal system that cannot track their own shipment!!!! I email Tracy right away and am keeping my fingers crossed that it is just a matter of a congested mail delivery. I have not said anything to Lydia but I know she would be so touched by these really lovely ladies who have reached out their hearts to us. Sending love and hugs to you. It seems that is not the only package that may not make it in time - the doll I ordered Lydia weeks ago was not sent due to a backorder issue.... I have asked them to ship it anyway without the one item. Perhaps both will arrive together.

Dinner is a delightful beef and barley soup which the children devour hungrily!! Thanks to Steve Ward for another wonderful comfort food.

My sister-in-law Debbie calls and we chat like two school kids with a short recess break!! We always laugh and I can tell in her voice that she is concerned but uncomfortable about what to say to me... just be yourself - say what comes to mind. The conversation rolls and takes its natural flow back and forth. Her quick giggles and sense of fun lighten my spirits but I am tired today and I hand off the phone to Max to say hello. Thanks for calling Deb!! *squeeze* xox

Max took the children to see the new 3D Christmas Carol movie. They enjoyed themselves and upon their return, Miss Lydia snuck in to bed beside me and promptly fell asleep after telling me how much she loves me. I love you too sweet pea. We hold hands as we drift off together.

The wind is extremely strong and keeps me awake through the night, along with the night-sweats and the rolling stomach..... *sigh*

Wednesday 9 December

Today is a little better than yesterday... I have had a few more hours of sleep. It is just enough to get up and get something to eat... do not want to lay in bed so I find small paperwork tasks to do and emailing. Tomorrow I will try to get the laundry done that I wanted to do for the past 4 days.....

Dinner comes by way of Swiss Chalet courtesy of Julie Atchinson..... sorry hun that you are feeling under the weather and I hope you are feeling better sooner!! xox

Miss Lydia is picked up by her best friend Maggie's Dad to go to Brownies together. Thanks to Tracey and Jay for looking out for Lydia and for taking some of the strain off of Max's schedule - he was able to mark his student projects this evening while I went to bed.

Lydia is put to bed but wakes up a short time later saying she has had a nightmare.... I think she has overheard Max and I talking. I am having a tough moment and the tears are sitting on the brink of spilling over - I have had enough of feeling crappy this week and although I know that it is a matter of only a few more days..... they feel like they are dragging on forever. I can understand the depression, anxiety and sheer anger that comes with a journey such as this and I am able to remain calm and introspective. I do not want to even consider what it must be like for someone going through this journey alone...... I am blessed and very very lucky. I sit with Miss Lydia and let her know that her dream is about how scared she is that she will lose everyone around her whom she loves but I let her know that it is OK to be scared and that the dream tells us that we need to reassure her that we will make it through this the best way that we can. I can't say for sure how long any of us will be here but for the moments that we are, we should make them count!! Goodnight my sweet adorable little girl, Mommy loves you always and forever. xox

Thursday 10 December 2009

I have slept better tonight but am still up at 4 am. The tea is comforting as I listen to the wind howl around the house..... day 2 of this winter storm. We do not have the snow here in London but areas around us are starting to pile up.... my friends in the States are all hunkered in for this first real blast of the season. I have put an extra blanket on the dog bed and put two sheets of paper towel into the rat's cage. Today I am hoping to make it to my Yoga class... I desperately need to get out and be with the girls.

I make it out to Yoga this morning... usually I am away for the first week of chemo but I am desperate to be with the girls and find comfort in their hugs and smiles as they note that although I am looking good, I am not well. My stomach will not stop rolling despite the food I have jammed into what feels like an overstuffed holiday feast - I drink a probiotic yogurt drink before class but cannot quell the burn that has been going through the night. Standing up is OK but the queasy head spins begin when I bend over.... so I modified my Yoga today and am grateful for just being amongst my friends.... the support from people who know exactly what you are going through is - priceless. One of the girls has her hand wrapped in a special edema wrap - she had her wrist adjusted by a chiropractor - voila, instant edema for her... she had the same surgery as I had but with no edema for 5 years until the Chiropractor.... now she will wear a hand gauntlet, likely for life unless the issue resolves itself. Edema is a result of lymphatic fluid that cannot find its way into the lymphatic system and get flushed out. I have a minor edema which can flair instantly due to injury and so this is a lesson to be very careful.

The rest of the afternoon is spent quietly watching TV and staying upright. Dinner comes by way of Pam McKellar!! Homemade macaroni and cheese disappears quickly as the hungry children take in a newly discovered show Cake Boss..... gives Pam and I a chance to catch up. Thanks so much for everything.... and thanks for the loan of Michael J. Fox's latest book. Incredible how one person could touch so many lives with his positive upbeat outlook. It is true what he says about being around loving supporting people - it makes all the difference. Hugs and she is off into the blustery cold night. xox

Lydia and mommy take a bath... she wants to wash my hair and looks ticked when I ask her if we will be styling it after? Would it cost more if my hair were longer? She resigns herself to washing my feet with a scrubby and grins evilly when I respond to the tickling!! I am grossly bloated and she makes note of this.... even Max is surprised by the girth created by so much bloat - water, food..... no movement.... yikes!! It will resolve itself.... just a matter of time.

I awake abruptly in the middle of the night in excruciating pain.... the acids from the stomach are on the move and violently force their way through my intestines creating spasms in their wake.... it is also moving upwards and my mouth fills with the burn. I sit in the 'restroom' - what a strange label for anything other than being restful?! I wait it out and when things finally settle after 1/2 hour, I can make my way back to bed. The wind is still howling.... so reflective of what is going on inside my body!!

I wish to thank the supper club for another week of phenomenal suppers, kind words and hugs. To Tracy and her daughter for their wonderful and lovely gesture - we have not lost hope and we will keep the faith. To my Art Therapy and Yoga class ladies - you make this journey doable. Sending love and best wishes to everyone. xoxo Happy Birthday to Mandi who is such a good friend to me and my family... we will come to visit with you soon.

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