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
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