Sunday, November 29, 2009
..... this fall has been one of the best we have had in years and most of it has been spent indoors. I find that my energy is easily sapped. My sister in-law calls this evening and expresses concern about how much I seem to be doing - I have to smile because I know how much she cares but I assure her that the blogs do not mention that my time away is short - usually a few hours at the most during the mornings and at times that there are few people around. I do not go shopping or go out at all on the weekends (last Saturday was an exception) - that is the time that Max goes and brings back the week's necessities. I have foregone the gym but do attend Yoga and Art Therapy at Wellspring only. My afternoons are spent refueling my energy usually by taking naps. It is so hard to also admit to her that I have a bottle of hand sanitizer in my car and 'wash' my hands before getting out of my car and when I return to it. I have towelettes that I use to wipe down shopping carts and I spend time avoiding people.... and here I am a firm believer that all children should eat at least a pound of dirt before they turn 5. Before this I think I must have ingested my fair share of grease, dirt and whatever else my hands came in contact with. Now I am constantly checking my hands for nicks and cuts that can easily get infected if I am not keeping them clean. Jeannie, do not worry.... I am taking the best care that I can!! Thank you for the phone call.
Saturday 28th November
It is Max's Birthday today and I get up early enough to make him breakfast in bed. I love my husband and just want him to have what is a traditional birthday morning. The past weeks have given me time to reflect on what is so important in our lives and one of those is to always make sure we celebrate our special moments no matter what. Fresh fruit and our seldom eaten but favorite bacon and eggs and a little special something in Max's coffee start our day. Lydia delivers her lovely monster drawing and of course the Dropeezes he loves so much. We spend time cuddling and Mitchel walks in and drapes himself across the bed. It is our weekend tradition to spend Saturday mornings talking and drifting through the flyers while sipping on coffee. I want to clean the house for him but he will not hear any of it. He knows that even the mildest of chemicals makes me ill and so without adieu, he finishes his coffee and is off to clean the house. I get the dishes done and do what I can to help out. He has found a rhythm and manages to get the chores done and is off to pick up some groceries for the weekend. I have already picked up a Cherry Cheesecake and some nibblies for a small gathering of friends in the afternoon.
What a wonderful afternoon spent with our neighbor friends. It is so unfortunate that his parents cannot come due to mom's cold but there will be time nearer to Christmas when I am hoping that all us will be feeling better.
Sunday 29th November
I am spending the majority of my day reading the Michael J. Fox memoirs 'Lucky Man'. I have read quite a few books in the past 3 months and I easily drift through a book now.... speed reading is the ability to scan getting the gist of the material while skipping over the connective words.. much like I do in my writings - get to the point while removing the fluff. I love reading Robert Ludlum but need to wait for a time when my mind reconnects with my brain - far too many details to skim quickly but great practice for detail retention. Michael J. Fox's story is well written, poignant and inspiring with beginnings that reminded me of my own childhood - living on military bases and managing to earn a grade 11 before heading out on our own. He had the blessing of his parents to pursue his desire to act and I like some of my contemporaries joined the military.
It is quiet in the house and I am cozied in to my bed enjoying the peace.... I wonder how my life had gotten so crazy that I forgot the very simplest of things that brought this sense of inner peace and serenity? I take time to stretch out my feet and my toes and cozy in even further. Despite the fatigue and the heartburn that has kicked in again - I am happy!! My children check in with me often to see if I am OK and hugs are plenty these days. I also wonder how much I would have missed out on if I hadn't been slowed to a snail's pace? The Yoga class has brought me back in touch with my spiritual side - not religious - just a meeting of the body and soul. I no longer jump out of bed but lay there and do a nice long body stretch starting with my feet, so when I do get out of bed, I no longer feel like I am walking on stiff blocks. I am not in a rush to get anywhere but set up short term goals to accomplish before the end of the day. It will all get done, but at my pace. Some days I am quicker than others!!
01 December 2009
I am en route to my Art Therapy class a little earlier so that Susan H. and I can meet up before she has to go to the Doctor's office. She looks great and well relaxed from her Yoga Class. We will make plans to get together sometime later next week. Although I have been put on a waiting list for the next Yoga Class..... I have been warned about physical pain that may worsen with activity.... I will adopt a wait and see attitude. I walk Susan to her car and with hugs she is off and I head off to meet with my Art class. The group has a few more members and it is active, fun and filled with great stories being swapped, tea being sipped and hugs. Bev has brought me a 'chemo' bag along with many other hand made bags that she offers for all the ladies who have shown up. Mine is a good size beige canvas bag that will now hold my purse, water bottle, books and my medicines that I will pick up on my chemo day!! It has been a sunny morning both inside and out!! Thank you so much ladies for being so sweet. Our newest member feels so comfortable with the ladies that she has removed her sweater... it is clear that she is missing one breast under her T-Shirt.
I think about the conversations that Max and I have every once in a while - I am not crazy about the idea of any more surgery never mind a reconstruction surgery. I am fine with the scars and the smaller sized breast - the scars will fade and I believe over time that the less we do, the better off I will be. I have not made a firm decision and will not for quite a while. I will focus on healing emotionally, mentally and physically. I know that some of the girls are not happy with their reconstruction surgeries.... lots to think about. I am mostly disturbed by a noticeable change in my skin just below the cheekbones and above the jawline - the skin is starting to ripple like the moisture is being sucked from the cells beneath it.... I think I have aged 10 years in the past 2 weeks and I am hoping that it is something that will rectify itself when this is all done. The nail beds on the thumbs are still purple and my feet and hands are still feeling numb near the tips of the fingers and parts of the palm - this much I have been assured will go away after the chemo is done.
I am very tired today and am suffering with a severe sinus headache - the pressure outside is changing and the sun has gone and been replaced with snow and winds.... not enough to stay for the day but the pounding stops after the second dose of Advil cold and sinus. The door bell rings and Walter is asking for help with another utility company... he feels bad because he can see I am not well but I motion him inside anyway and listen to his problem. I call on his behalf and the lady at the other end needs confirmation so I put Walter back on but she cannot understand him and so asks to speak with me again. I sort things out and scratch down a few notes for Walter's records on his bill and hang up with a pleasant 'thank you so much for your help'. He is relieved that it has been all sorted out and makes a quick exit after multiple apologies.... no worries Walter. I go back up to bed where I have been reading 'The Book of Negroes' by Laurence Hill from Burlington Ontario. It is understandable why the book has been so well received by the critics - it is a brilliant narrative of a fictional black woman from the 1700's who experiences being a slave brought from Africa to Charles Town (now Charleston) South Carolina. I couldn't put the book down despite the headache that was now beginning to ease. I would finish the book in roughly a day knowing that I would not be able to read after my chemo treatment on Friday for at least 4 days.
Max took Lydia to the food bank for the annual Brownie volunteer evening. Lydia's best friend's mom approached Max and offered to drive Lydia on Brownie night to help us out. What a sweet offer and we both really appreciate the help. Thank you!!
03 December 2009
It is an early start today - up at 6 a.m to get ready for an appointment at the cancer clinic for 7:30. I am the first one there and realize that I have to go to another clinic to get my blood requisition.... the IT department had done an upgrade and now the entire computer network was bogging down and forcing the nursing staff to do everything by hand. The blood work department was experiencing even slower issues and I was thankful that being the second patient of the morning meant that I would not have to suffer a long wait time. John is a new patient and sits across from me while breaking out in a huge smile when I bid him good morning. I can see that he has a dent in the left side of his skull above the ear.... it actually resembles a crater and I can see by his eyes that he has also likely suffered some brain damage. It doesn't lessen the fact that he is jovial and loves to chat.... he also doesn't seem to mind fielding questions about his skin cancer which was a result of an asphalt accident - it seems that someone forgot to empty the pipe that allows the hot asphalt to travel down to a waiting wheelbarrow.... he opened the door and received a scalding hot shower of the thick gooey liquid which solidified as it cooled... burning through his clothing and his head. His glasses saved his eyesight and after 6 weeks in a burn unit.. he was able to leave the hospital. He now has skin cancer in and around the crater on his head and has opted to not do skin graphs but will do radiation instead. He tells funny little aside stories about the nurses..... I love his laughter, his positive attitude and his stories and I laugh along with him. Later, he would pass by my examining room and point me out to the nurse with a grin and say 'now there's trouble'! An older woman whom I had chatted with in the blood lab waves to me on her way to her examination room and later when we both are leaving at the same time we bump into one another and as she turns to face me we both smile and hug each other. We part and laugh as we wish each other well. I ran across someone a few weeks ago that said 'if we all put our troubles into one big pile, chances are, you would pull your own right back out'!! I would be inclined to agree. After a few trips to the Cancer unit and hearing other people's stories - I consider myself lucky.
I managed to get blood work, see the doctor and be out of there by 9:30 so I headed out to Yoga - It will be my last class until the New Year. The gals were so excited to see me and we all just chatted and laughed before class. I am on a waiting list for the next class and it seems that all the classes are filled - I have no less than three ladies offer me their spot when I can get there on the days that I am feeling better. There are offers to drive me to class and hugs from another who I have not seen in 3 weeks. Our instructor comes up and gives me a hug and wishes me well for tomorrow..... I am so incredibly lucky!!
Thelma goes to the vet for blood tests to see if her Thyroid is Ok? She has a skin ailment that keeps flaring up - her hair falls out, she breaks out into these hives and she smells bad. Blood tests and some new meds to try..... I am keeping my fingers crossed that she improves.
Max and I go to Sears in the evening - there are very few people in the store as we make our way to the catalog department on the second floor where we pick up Lydia's new boots and cash in the points we have been saving for the past few years. We purchase a gift for Mitchel and some earrings for me and make our way home. We walk hand-in-hand and chat about Christmas and about my next chemo tomorrow when he will accompany me for the first time to the chemo suite. I am interested in seeing his reaction.
I wish to thank Beverly for the lovely 'chemo bag' and for our friendship in the Art Therapy program. I want to thank all of the people who have shared their touching stories with me. Thank you to my Yoga class for the hugs and offerings of help and to our volunteer Bunty for her wonderful stories and company over tea. Thanks to Eva for your phone call and am glad you did call when you were ready :) xox I want to thank Michael J. Fox for his candid and poignant book and for the positive power of his soul to effect change and awareness for Parkinson's - even though he is debilitated with this independence robbing illness, he still sees the bright side of life. It is something I see played out time and again in my journey with people so debilitated with their illness yet find the lighter side of it through laughter and love. May you all have love, laughter and live every day to it's fullest. xoxoxo
Wednesday, November 25, 2009
...... I am tired in a bone weary way this week but I know that I have to keep moving and keep the focus on getting my strength back..... and then the insurance agent calls this week to ask 'so how are we feeling today?' Not sure about the 'we' part - he sounded chipper and me, I had to grab a piece of paper to write down his name because no matter how many times he repeated it... it would not stick. Imagine if you will walking through a desert feeling extremely thirsty, hot and weary... you look up and see a shadow following you and you realize it is a vulture just waiting for you to drop.... not a comforting feeling. I am polite and informative but am tired of answering the same questions every single time.... yes, I have chemo every three weeks.... blah, blah, blah. He indicates that they are still working on my submission and did I submit my paperwork? Yes, 3 weeks ago - oh, well we still have not confirmed your Long-term disability...... this, even after I have been assured by someone else that everything is in order - I do not mention this to him and let him have his say before politely saying goodbye. I just want to scream!!!!!!! It should be the last worry in my day but instead I feel like I want to strangle the 25 year old on the other end who is oblivious to the fact that I am already worried about my health..... and should I really worry now about paying my bills too? I have now worked supporting myself and then a family for the past 28 years with no claim!!!! I feel like a beggar.
Tuesday 24th November
My new neighbor is knocking on my door at 9:30 and luckily I am dressed for the day... he excuses himself because he does not want to bother me but he is obviously upset as he quickly explains that his trip to a local utility company has been fruitless.... and expensive as he is out of pocket for the cab fair. The guard at the inquiry desk merely cut him off and pointed to the phone bank indicating that it was not his job to help despite the fact that this elderly man had difficulty reading the form. After almost 45 minutes my neighbor gave up trying and made his way to my house. He needs help filling out the application and is fearful that his utilities will be cut off as it has been outlined in the letter he has in his hands. I sit down with him and need to put on my reading glasses - the printing is so small and the room to write is even smaller. I fill out all the papers and then photocopy his identification. I have Art Therapy in an hour and offer to take him back to the utility company and help him out - no worries, it is on my way to Wellspring. The guard had been extremely rude to him and I wondered if it might have been because of his thick accent..... until I had to deal with him and found myself on the receiving end of not only being cut off in mid-sentence but being patronized.... if it is one thing I cannot stand - a rude patronizing kid wearing a uniform. I gave him my 'mom' look and point blank told him to never patronize me again....... he immediately got up and couldn't get to the photo copier fast enough with the ID from my neighbor. 'Too late, got that one covered, just answer one question - who would ever think it was OK to not assist someone who is clearly sight impaired?' I used one of the phones on the phone bank and called an assistant who indicated that even though they are not supposed to assist that they would come downstairs and help my elderly neighbor to make sure his papers were in order. The lady was delightful and was very kind to him and I thanked her profusely. On our way out, I promised my new friend that I would make sure that I would call the young man's boss and the company who hired him to represent them in the lobby - and I did. Being human is everyone's job - paid or not!!!! I dropped my very grateful elderly passenger off at City Hall to get his taxes in order and waved goodbye... I was on my way to Art Therapy.
I was so excited to see the girls and they were happy to see me. We chatted and made our crafts. Bev is so delightful and her fantastic smile is like sunshine on a cloudy day. She thanks me for being so nice to her and making her feel welcome.... she does not have cancer but she lost her husband this summer to pancreatic cancer... she said that in her first class with us I had told her that it didn't matter that she did not have cancer and that she was one of us anyway. We hugged after class and she promised to bring in a few bags for me to see that she had made to keep herself busy but did not know what to do with them. Kim has also opened up and shares - she is always so reserved but she shared a wonderful story after I told everyone about my supper club.......
..... Kim's sister also has cancer and after a recent surgery, the two decided to head out on a vacation but Kim could only afford regular class and her sister had a first class seat. Her sister did not want to sit apart during the flight and so she decided to offer her seat to one of two passengers that was sitting with Kim. The first one showed up and appeared to be relatively nice so the ladies approached him with an offer to trade seats... he was hesitant and couldn't believe that she would trade her seat but after convincing him that there was no catch - he gratefully accepted and so the ladies were able to sit together. He waited for them on disembarking and thanked them profusely for such a generous offer.... something that he will likely never forget.... and something he will likely pay forward. The other passenger in their row turned out to be a grump which made the ladies quite relieved that likely Karma had brought the right one to them first.
Wednesday 25th November
..... so tired today.... dragging my butt out of bed after a restless night. The remaining hair on my head (crown) has become stiff and prickles when I lay down. I shave the rest of it off with a brand new 4 blade razor - I am not supposed to but I will need my rest. I have a few errands before my next chemo and have decided to do one a day so that I do not stress myself out. Today I go to Alicia's Deli to purchase our traditional Christmas treats. I will not be baking this year... too tired. We celebrate a special Dutch/German tradition on the 5th of December - it is St Nicholas and Black Pete's visit. The children put out their shoes on the night of the 5th and will get surprised in the morning. This year I will not be well enough to really participate as it is 48 hours after my Chemo. Max will be helping and is relieved the purchases will be ready for him.
Today I meet up with Thomas - he is trimming my wig and pulling the wow in the front bang down.... it is so long that he has to jack the chair up and sit on a low stool to trim the bottom properly :) It looks lovely but now we have to test drive it and so we head out to his favorite coffee shop. I seem to be the only one consciously aware that I am wearing a wig. To be honest - as much as I like the wig.... I really prefer the hats or headgear. Thank you so much my dear friend for being there and navigating me through unfamiliar waters. Love you!! xox
I have finally finished making Max's birthday present - he collects Santas and this year I have hand made one from a pattern I purchased from Fabric Land last year but found a few weeks ago. I am proud of the finished product which has taken me days to complete. I know he will appreciate the time and effort.
Tonight I am exhausted and find sleep evasive but will try anyway.....
Thursday 26th November
I do not quite make it up in time to see the kids off to school and I struggle to get out of bed.... I need to go to Yoga this morning. The sun always comes out on Yoga day and with it brings a smile to my face. I pull on my Yoga pants and tug a knit cap over my smooth scalp after putting some make-up on. Without the make-up you can see the eyes have hollowed and dark rings have formed beneath. I look at my reflection and when I am happy with what I see I head out - class starts at 10 am. It is so much fun seeing all the Ladies I missed last week..... interesting about a yoga class for cancer patients... you never know who will be there and who will miss because of appointments. I say hello to now familiar faces and grab a tea after with the volunteer and a few of the ladies who have a little extra time. We talk about naturopath products and I will head over to the Quarter Masters on my way home. I will also pick up some groceries for dinner. I am getting good at traversing through a store and directly to the items I need with little contact from the public - I am at a low point in my immunity and do not want to take risks.
I step into Quarter Masters and the ladies there are helpful and very supportive when I tell them what I need and for what. They show empathy and concern - they are surprised at my smiling face and my happy demeanor.... life is good for me and I am grateful for everything I have - no time for frowning or pity here!! The ladies wish me well as I thank them and head out the door. I will head off home and meet with my lunch visitor Sandra M. who has been staying away until she feels better. What a great visit - I miss her soooooooo much. The phone rings and William's school has called to say that he has accidentally been struck in the teeth by an overly excited rally goer at one of their home games. I call the dentist office and yes, they will take us in 45 minutes to inspect the injury. I walk Sandra out and hugs in the driveway as we are both heading down the road - her to work and me to Saunders. We are a little early so we drop in to a Tim Horton's and grab a coffee..... William is sensitive to others staring at me and as we leave he mentions this and then I laugh when I mention that I have yet to change out of my yoga pants!! I also had to smile because the only other person standing in line had a few groceries she was juggling trying to find her pocket change when a patron enjoying a coffee went out to his car to grab her some bags. I told him that he was super sweet and he smiled shyly back at me. Random acts of kindness!! By now I am completely exhausted and just want to lay down but we manage to get to Dr. Spagnuolo's office where all the girls come out to see me and to tell me how glad they are that I seem to being doing well. They are all just so wonderful and we chat while Will gets X-rays and examined. We will have to go back in three weeks to make sure that there is no permanent damage but for now he must wear his retained 24/7. Thanks for the well wishes...... I am so tired that I just want to lay down. It has been only 6 hours since I started my day and I am done!!! Time for home and a serious lay down before dinner needs to be cooked.
I am grateful for my in-laws getting home safely from their trip to Guatemala but am sad that they are not feeling well enough to come to Max's birthday celebration on Saturday.... it will be a quiet affair this year. I am grateful for the kindness of others and the wonderful stories they have shared about random acts of kindness. I am grateful for those that commit random acts of kindness towards strangers in a bid to make their lives better. I am grateful for the ladies in my Yoga and Art Therapy who make me laugh and share their lives with me. To my friends in the States - Wishing you a very safe and happy Thanksgiving holiday and may your Black Friday bring you wonderful surprises at the malls :). xox
Tuesday, November 24, 2009
.... 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.
Tuesday, November 17, 2009
.... 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.
Monday, November 16, 2009
... 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
Thursday, November 12, 2009
..... 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
Friday, November 6, 2009
.... 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.
Monday, November 2, 2009
..... 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