Friday, January 29, 2010
..... I am starting to feel more myself. My hands and feet still feel strange to me.... a little disconnected from the rest of me and constantly dry, my eyebrows are thinning out and the hair on my head that was starting to grow in has begun to fall out again.... I expect that most everything will return to some kind of normal weeks after the last dose.....
Today was a day filled with messages from friends letting me know that they are still there... thank you so much, my spirits were lifted and I felt really good today. Thank you to Jim Page for dropping by and bringing a great card from the engineering crew and thank you for the generous gift card - I wish you knew how much I miss being there with all of you. One day at a time. I was not expecting company and realize that without make-up, thinned eyebrows, darkened rings under my eyes and a ghostly paleness..... I was not looking my best!!!
My husband and I attended a pre-marital course just before we got married in 2001. The sponsoring couple gave us a beautiful unfinished wooden chest and said that we could decorate it and use it to house the love notes and words of praise that we could share with each other. Today I took it off my dresser, cleaned it and painted it with the acrylic paints I bought yesterday. It felt good to use my hands painting tiny flowers on the bright green background and gluing some silver beads on the front to use as a knob. It's amazing what bright colors and sunshine splashing across the family room carpet in the afternoon can do to one's soul. It was a very quiet afternoon spent carefully forming the miniature flowers and only concentrating on the task at hand...... goodbye depression. I must remember to keep the art supplies close at hand when I get back to my life and to remember to spend time enjoying the things I used to make time for years ago. Lydia and Mitchel are enjoying the supplies and have been producing more involved art projects that are colorful and using multiple medias.
This weekend was peaceful and spent making art projects with the kids while Max began producing the built-in's for our multi-media equipment..... his skill, 2 days (spread over 2 weekends) and $120 worth of materials will give us additional storage space that will leave our family room without clutter!!
Thank you to Sue for a wonderful lunch - it was really great to get out and see you!!! Looking forward to floating in the pool this summer!!
Monday 01 February
Day is starting slow but loving the sun!!! I am home today and very tired. My knees are still sore and my hips ache but I attempt to get out for a walk. I shuffle around all night in bed searching for that elusive comfy spot but not succeeding!! It will come but just before my next chemo and then I will spend another two weeks looking for it again!!
I spoke with my mother on the phone this evening...... the news is in - Dad has been diagnosed with Dementia. We knew this was coming but it has progressed to a point where he now needs care outside of what Mom can give him. I will say that the two of them have been struggling for a while now and perhaps they will finally sell the farm and move into a flat in town. Dad has felt isolated for some time now what with his clinical blindness and not being able to drive makes him feel like his legs have been taken from beneath him. I am still unable to travel and can only be there on the phone for them - it is a 5 hour trip by car. My brother has been instrumental in taking care of them for the past two years whenever he can get away. Sending hugs.
Tuesday 02 February
It is GroundHog day today and I have sent birthday wishes to my younger sister - it is enough to say that she has estranged herself from the family and I know I will not hear back from her. Shame really, but then she never really was that nice to me and so I go on with my day but wish her happy thoughts anyway.
I go to Art Therapy today and make a picture collage of wonderful bright and colorful pictures that I have pulled out from a number of National Geographic and Gardening magazines.... it is supposed to represent me in my physical form... the ancient gazelle head represents wisdom. The arms are made of flowers with gardening gloves at the ends representing my hands... one hand is wielding a tool and the other a light. My legs end in two brilliantly metallic beetles that are going in opposite directions - like me most days.... busy and always multitasking in two different directions. I have a heart made from a shiny green beetle and tucked in amongst the elegant cranes (patient and still) is a little girl in a dance outfit.... she is the little girl I still am inside that the Art and my illness have awoken. She does not need to be protected, just heard and comforted... just sometimes. My mood is stellar today and I am so excited to see the girls again. I have created a bond with these ladies and I miss them dearly when I can not make it.
I have an opportunity later to see the results of a double breast reconstruction and am duly impressed. As the girls in my Art class would say - Avatar breasts (the movie currently in the theaters and causing quite a stir as being the best film ever!!). I will eventually see a reconstructive surgeon but need to do more research into finding the right one and am not really sure if that is what I want to do anyway.... time will tell.
I am really tired today by early afternoon. I head out in the late afternoon to pick up a few groceries at the Metro a block away.
Wednesday 3rd January
This afternoon I head out to the hospital for 'tattoo' day in the Radiation department. I arrive 1/2 hour early at the Radiation Reception desk on the first floor of the London Regional Cancer Clinic.... it is a floor below the chemo suite and am issued with a pager. I make my way over to the waiting room and see that the volunteers have just wheeled in a coffee cart. Ah, cold ice water hits the spot and I make my way over a number of times for a refill. I am very thirsty these days and have a hard time keeping hydrated . A lady sitting near by talks to me about her husband and that he has a tumor on his larynx. She kept saying that she told him to go and see a doctor but by the time he went the tumor was enlarged enough that he now has a feeding tube and has just begun chemo.... this was a tumor they believed to be linked to a reflux problem he had as a young man but never followed up on it.
The Radiation Technician is scanning faces as she walks around. I ask her who she is looking for and surprise... it is me!! She introduces herself as Lisa. She is very pleasant and sweet as she escorts me to a changing room and instructs me to strip to the waist and put on a gown with the ties in the back. I enter into a room with a cat scan and an unusual set up on the moveable platform. The incline is fitted with a padded flat panel for my rear to rest on and the clear plexy attached to it rises up to form a neck rest. There is an arm and shoulder rest for my left arm that will hold my arm up and away from my left side to expose the breast and left chest to the CT scan. This is the kind of rig that will be in place for each of my radiation appointments. I am introduced to Christine who is taking measurements with the use of laser eyes from multiple points in the room which will produces crosshairs. Special tape is placed across each of the scars that I have from the surgeries so that they will act as markers in the pictures that the Scan will create. I am now marked in a number of places with marker and tape and am instructed to stay as still as possible. About 5 minutes later, the pictures are done and Lisa comes over to see me. She will now 'tattoo' the little freckles on my skin that will be used as permanent markers for all my radiation treatments. She first swabs the three sites she will be marking with alcohol and then uses a stick soaked in ink to daub the sites. A needle is then used to pierce each of the inked sites to produce said tattoo. I am done and Lisa continues to talk to me about what will come next and hands me a pamphlet. I was so impressed with the time these ladies took to inform and do the procedures. I enjoyed their company and shared some laughs... probably the best appointment I have had to go to through this entire journey. Thank you so much.
Tonight Will is being a teen and unfortunately for him, he is now grounded. Funny how he just fell asleep - probably what he really needed more than anything. I covered him up and kissed his forehead. Love you baby.
I did some light plaster work - nail holes etc and primed today. I am too tired to carry on and so I blog and get ready for bed. Tomorrow I go for blood work and my Oncology appointment. Night Night.
Thursday 4th January
Today I head out to the hospital for a regularly scheduled blood work and meeting with the Oncologist's team. It is 7 a.m and I am having a hard time getting up and going..... I am one of the first patients to arrive - they do not have my blood work requisition ready and I find a comfy seat to wait. There is a vietnamese woman sitting by herself in the dark and quiet waiting room and I sit near her and say hello. Her english is broken at best but her smile and her willingness to practice her new language is obvious. We talk for a few minutes and I am patient as she struggles to find the right words and she blushes when she gets it wrong... I smile back and repeat what she has said and she nods and says thank you when I figure out what she wants to get across. She has been here for a year and the first 6 months she tried working but lost her job, so now she takes english classes.... that is until she discovered a lump in her breast. This is the second one that she has had and both were recently removed. She indicates that it is not cancer but I wonder why she is here? She tells me that her father died of liver cancer. Two women seat themselves near us - they are from the middle east and speak very well in English and quickly engage in conversation with me. The vietnamese lady gets called and we clasp hands and bid each other good bye. She grabs my arm and says thank you, nods and smiles down at me as she rises to go chase after the nurse that has started to move off. I relocate closer to clinic 3's kiosk when the other lady I have been chatting with responds to her pager.
My pager goes off a half hour later and I follow the nurse to the weigh scale... looks like I have put on a couple of pounds - easy to do when you are in physical pain and your appetite has hit an all-time high. The nurse who comes to talk to me indicates that I am considered overweight to obese..... by their charts pretty much everyone in the waiting room fits that description. I will admit though that the weight will be challenging to get off until I can get back into the gym. She tells me that I can likely start back when the pain subsides. Looking forward to getting back into shape. The nurse also indicates to me that alcohol should not be imbibed simply because their statistics indicate that the reoccurrence for breast cancer patients that do so is significant enough to warrant the warning. The last time I had a drink would have been 1/2 glass of red wine and before that would have been in August before my second surgery. I do not miss it but on occasion will still have a glass of wine. I will have another appointment with Oncology in March as a follow-up.
I would like to congratulate Heather R. whose son was born on February 1st and to Melissa and Norm for the safe arrival of Erika on the 3rd of February!! I love babies!!
Friday 5th February
I am headed off to the college this morning to have coffee with my boss. Elaine is sick today but waves to me from the door way. I miss all of you and it felt good to walk into the college after 8 months. I really enjoyed our chat and look forward to another coffee soon. Thanks so much.
I spent the afternoon in quiet... I am very tired these days... apparently the nurse also said that my red cell count was low and I can feel it. I am almost done. I will enjoy my week end and look forward to finishing my chemo journey!!!!
Sunday, January 24, 2010
...... foggy brain and in pain.... not exactly a great mantra but one in which I am living each day. I am up early and trying to shift the pain that has now found its way into my spine from where it started last night in my hips. The sweats are driving me near mad with a constant on again, off again.... sheets on, sheets off ...
Friday 22nd January
I have started my slow shuffling walk trying not to jar the already painful knee joints and hips - I am taking over the counter pain medication to stave off the worst of it but even that is only taking the edge off.... I am now taking them every 4 hours and having to hold off from taking them too early. It creeps up the shins through the knees and up into the hips - I can keep it at bay if I hold my legs just right and then stop moving. Finally comfortable and then I have to get up again to go to the washroom. The house is empty and everyone is off to school or work and I will get up to at least read the paper and drink a cup of tea. The effort pays off as I read the amazing news of a young couple who has just had quadruplets!! That is exciting!! I will sit quietly catching up on the news and spend the rest of the day laying down watching TV and finishing the wool hat I started... my hands do not hurt.
Mandi calls around 6 pm.... she has had an incredibly busy week and is almost crying when she apologizes for being late and that she will call in our dinner.... no worries girl - Max will head out to pick up pizza for the kids. She does so much for us and then tries to juggle everything else in her busy world. Hugs girl, we love you!!
As if by scheduled routine.... Eryn, full of tears and escorted by William has come to stay the night again..... her Mom just can't seem to get it together and once again tells her that she wished she was never born.... who does these things? This has become a routine with every chemo round it seems and so with a little shuffling - Eryn sleeps in Lydia's room.
Saturday 23rd January
This is the day I have not been looking forward to all week.... the pain is now deeply entrenched in my bones and has moved up into the spine - it cracks when I shift in bed and the knees send electric shivers up to my hips. Today is my slow day.... a shuffle of sorts just to get anywhere and not in a hurry either. My brain is functioning but conversation is difficult and I cannot remember things. I can see that the day is sunny and bright and am grateful that it is winter.... I am already feeling very isolated from my world and apart from what is going on around me. I shuffle to the couch and sink in to it while the kids get themselves organized.
Mandi has come to call and has brought flowers..... she has been so amazing through this journey and I am grateful for her incredible support. Her children wait in the hallway and I can see by the look on their faces that I look pretty scary today. It is hard for a child to fathom an illness that takes so many months to go through - they have asked her how come I am still sick?Hugs and kisses later, she is off to do what Mom's do on Saturday with their kids.... I can't wait to get back into my routine again..... soon.
My hair is growing back and I hope it continues... this chemo is also supposed to cause hair loss but not always..... although that being said, I have fewer eyebrows today than I did a few days ago. I have eyelashes too which I am grateful for - not a lot but they are still there none the less.
My attitudes usually start to take a nosedive right around the 4th day of chemo... about the time that the immune system begins its decline - the thoughts are usually negative and focused on things that bother me... like the friend whom I parted ways with when my journey began... a neighbor, who just had her fourth baby is having to deal with this woman dropping her child off and not picking her up until sometime after 9:30 at night because she and her husband decided to go out on a date night.... they pulled the same stunt on us numerous times without calling or even asking and a few times we had to put her daughter to bed because it was too late. I am just grateful that I no longer have to put up with this .... I just feel bad for this woman, who like myself, did not want to rock the boat but when you are going through stuff... you sometimes can't take on anyone else's. Every experience is an opportunity to learn and to improve oneself. Tomorrow will be a better day!!
I am still on my journey and will be for a while yet to come..... I can still answer a phone and look forward to seeing my friends when they have time in their busy schedule to see me... just know that I miss you too!!
Dinner tonight is provided by Max.... we waited until 6 pm and then Max put on chicken burritos for dinner. I burnt my lip trying to eat it because I was so hungry - this should have been a forewarning of things to come but I persisted and within an hour.... well, the pain came and the tears started. Max felt bad and really it was Ok I told him - I should have known better but I made a choice to eat it and now have to deal with the fallout.... he admits to me that he was feeling a bit of the burn and could only imagine what I was going through.
He tries to put me to bed after my stomach settled down and we talk but the pain has kicked it up a notch and I turn away from him and the tears course down my cheeks. He touches my hip gently and moves off to leave me alone. He has been really good these past few days and tries to comfort me when he can by gently rubbing my back or my feet. My feet have been bothering me this time and warming them in the bath is temporary, so he has warmed towels in the dryer and wrapped them. If I lay on my back with my body pillow supporting my knees in a still position I do not hurt as much.... it is when I begin to shift that things start to pain me. I have been laying down most of the day and catching cat naps when I can.... emotionally I am feeling better but mentally still foggy... nighty night.
Sunday 24th January
Today is a quiet day and a raining one.... a damper on the spirits. It takes forever to get up, take a shower and get dressed. I want to go out for a walk today despite the leg pain but I do not get very far in the driving rain and need to turn around and go back home.... tomorrow I will try again. Michelle is online and leaving notes on my Facebook. She has had the Docetaxel on Friday and I am giving her advice in order to avoid some of the issues that she will face in the coming days. So far so good with her but the 50 hour mark is closing in fast and she has taken her pain meds much to my relief and to hers. She is grateful for the experiences I am sharing but is scared... she is doing this alone and I am not.
My eyes are now sensitive to light.... this is the 5 1/2 day mark and my ears hear like a hawk... noises are giving me headaches. Max has to clean the bathrooms but can not use any chemicals to do that with - baking soda and bleach cream cleansers are the only ones he can find that do not give me an instant headache. It is amazing how many cleansers have odors just to make them enticing for the consumer to use.... they give me instant headaches.... wonder how many childhood allergies stem from Febreeze and other such products that are completely unnecessary if you keep a clean home. My mother always aired out our linens and our rooms almost daily.... this I do this morning to cleanse the upstairs while staring out at a gloomy rainy sky. The breeze feels good.
I am having difficulty looking at the monitor... it is too bright.... I am off to bed.
Steve Ward brings another culinary soup and the kids are in total awe of this giant of a man who has an incredible skill with a pot!!!
Monday 25 January
I go into work for a quick meeting to discuss the party a few weeks ago. Mandi has picked me up because my head is too foggy for driving and will later drop me off. I forgot to do a few things while at work but that is the way the head is these days... more off than on.
I spend the afternoon dozing off and on and tolerating the now relentless hot flushes that have me soaking wet one minute and cold the next.... it really started full force in the first dose of Docetaxel and now is taking it up a notch...
Steve Stax has made another fine meal - herb chicken with a lovely pasta with white sauce - yum!! Thank you!!
Lydia has been given back her eye glasses.... just a little adjustment is required but we are grateful that they have been returned to us!!
Tuesday 26 January
I am feeling under the weather after a restless night with joint and rib pain and of course the endless sweats. Max has slept in Lydia's bed, Lydia slept beside me and I will be lucky if I got any sleep at all!!
Art Therapy was packed but a really great group today. Bev, Kim, Ruth and Majella were there along with a host of new people... one young man has lymphatic cancer and has brought his Mom with him.... we will all cry later when she breaks down in front of us, trying to choke back tears when she tells us how worried she is for him and his young family. We all have tears in our eyes as we let her know that it is OK... we are all in our journey and we understand what he is going through. My art project is about me sitting in my garden surrounded by flowers and blue sky with my colorful bucket of water filled with flowers.... we are supposed to create something of ourselves and what we would carry on our lonely journey. Art Therapy brings solace to my inner self and keeps my spirits up - I look forward to seeing the women that I have come to know and appreciate.... this summer, I hope to see some of them out for a swim at our pool!!
Wednesday 27th January
It has been a restless night with sore joints, bad belly pains and of course the heat flushes.... by 4 am I have had enough and the tears start to flow and before I start to sob... I have pulled on a sweatshirt and hat and moved downstairs. I just want to sleep. Last night after dinner, I was in a mood - too noisy for me at the dinner table and just feeling out of sorts. Max kept trying to curb me and finally I had had enough and sniped back..... it is critical for a partner to keep in touch with what is going on and to ask questions..... so here it is.... I am going through chemo and menopause at the same time - I am in pain, exhausted and trying to cope with fluctuations in hormones. Maybe one day I will write a brochure, embellish it with lovely sunflowers and a couple enjoying a picnic under a grand oak tree with an even grander beehive attached to a lower branch and title it 'If you swat at a beehive, you are going to get stung'. I envision the next page with the now unrecognizable man's face completely covered in hives and welts but smiling because he nailed at least a handful with the branch still clutched in his swollen fingers.... wouldn't need a lot of written words after that visual :)
This journey can be terribly lonely at times .... I get to watch everyone walk out the door 5 days a week and live their lives while I try to keep mine together. The isolation is sometimes made worse by being left alone... I have hit the 6 month mark and while others have moved on and continued in their busy lives, I am still here. The blog has helped to let everyone know where I am at and how I am feeling but it neglects to mention that I still need my friends and would like to hear from them. We don't have to talk about my journey.... we can just have coffee.
Thursday 28th January
It is a cold bitter January day with high winds and beautiful sunshine... yoga day is always a day where the sun makes a show no matter what comes prior to or after. I am feeling bad but I know that I really need to get out.. sense a bit of depression setting in. Yoga was amazing as always with hugs and hellos from everyone including Mary whose daughter is not feeling up to coming out today - the radiation burns are making her very uncomfortable :( It is our last class of the 8 week cycle and I am able to do most of the exercises and am thankful that it is a restorative class. I meet afterwards with some of the ladies for coffee.
I am so inspired these days by my Art Therapy class that I have enough energy to pick out a few supplies from Michaels - oil pastels, watercolor crayons, paper, acrylic paints, brushes and some easy to decorate frames for Mitchel and Lydia.... later when they come home they are ecstatic at the new items and quickly get into a craft hour!! I also did some grocery shopping at the Loblaw. Signs everywhere tell of the plight of the Mexican and Florida growing season - our cold snap has found a hold in the deep south affecting produce..... just cringing to think of how expensive things will get over the next few months. I am starting to wear thin and my hips, legs and knees are feeling the strain of being upright so I head to the cash register and see a cashier whom I have not seen since last July - she is soooooo sweet and usually works in the plant center in the spring and summer and over the years we have chatted about our lives in a very candid and open way. Nadine recognizes me right away and after hugs she says"OK, so are you going to tell me why you don't have any hair?" and I turned and smiled and let her know what was going on.... the woman she had just finished serving gives me that 'Oh, dear' look and smiles crookedly as she redirects her attention to her grocery bags and moves off. "Don't make me cry", says Nadine as she reaches out for another hug. We chat and laugh as she packs the shopping bags and hugs again as she wishes me well and encourages me to come back and see her again when I am up to it. I smile as I walk/shuffle away.... been on my feet too long. I pack the car with care and jump in - is it really 1:40???!! I give Sandra Moyer a quick cell call to let her know that I am on my way home.... no worries, she is just leaving work and heading my way for lunch. Whew!! I get home minutes before she shows up. I have bought a hot lunch for us and spend quality time at the dining room table chatting and laughing - I really love the time she spends with me. Have a safe and super fun vacation and look forward to seeing you when you get home!! xoxox
I want to thank everyone for their calls and well wishes. I know that life is busy for everyone and the moments spent just saying Hi mean so much to me!! Thank you Bev P. for being so sweet and I always look forward to seeing you every week - hoping to get out to have lunch with you when my chemo is over. Raye, thank you for your cards that always come in the mail at the right time - you are an earth angel. Mandi - for always being there and for being a good friend. I am learning so much from the precious souls around me that teach me everyday how to be the very best that I can. xoxox
Thursday, January 21, 2010
.... the memory is dull this morning and I am having to search hard to connect with what needs to be done... the headache began last night - jaw pain and around the eyes. Took the Tylenol and Advil in an attempt to stave it off... I will need to do this now every 5 hours over the next week. I am having difficulty managing the simple task of getting the kids organized this morning - Max leaves early in the morning to head out to the college on Thursday's and I offered to get their lunches made. What should have taken a few minutes.... it got done with verbal assistance from Mitch. Last night was spent in bed tossing while toasting and cooling off - this forced menopause thing is really a nuisance and I no longer wonder why my mother was so miserable!! Yesterday the nurse came to give me the Neulasta shot and to check my leg wound. The wound has begun to heal and the pain is gone. It has been a month since I hurt my ankle with a simple boot rub and according to the physician - it could take another month for the ulcer to scab and fully heal. The immune system is really compromised with the Docetaxel and I have to be extra careful. The antibiotics will run out in a few days and after that, my system will take a full dump before coming back online. Here is a recap, as best as can be retrieved from the few days I have not been able to blog....
Tuesday 19 January
It is chemo day.... round 2 of the Docetaxel. Today I am accompanied by Eileen and she picks me up early so we can grab a cup of joe after making our way upstairs to pick up the pager - the receptionist lets me know that I should have submitted my appointment stub to them prior to leaving my appointment last week in order to get my next appointment - thank goodness someone at the desk found a carbon copy on my file and made one for me in advance - darn chemo brain!! I run into my Oncologist who is also waiting to fuel up in the line behind me at the Tim Horton's on the bottom floor and I chat for a minute before turning to go with Eileen to find the elevator to head back up to the second floor. Eileen is on oxygen and I tend to forget that I move too fast for her to keep up and she is relieved when the elevator is located and we are back upstairs into comfy seats to wait my turn with the pager snuggled into the front pocket of my jeans. I recognize a familiar face across from us. Mary is the mother of a young 27 year old woman who is going through breast cancer - it is invasive for her and so she is doing chemo and radiation at the same time and Mary lets me know that she is OK but is not coping with the extensive burns to her chest. As we chat, I indicate to her about the sudden onset of menopause and was her daughter experiencing anything like that despite her age... Mary wasn't sure but would ask. I looked around and noticed a lot of people staring in our direction and looked down to discover that someone had dropped 2 open but clean maxi pads on the floor a few steps away from us??!! It has created quite a lot of attention but Mary got up and quickly disposed of them in the garbage a few feet away and when we looked up - there were lots of smiles, some a little red-faced. No worries, Mary, Eileen and I continued with the conversation until my pager went off. See you soon Mary and give my best to your lovely daughter - oh, and please let the yoga class know that I will not be able to attend on Thursday. Nurse Haley is waiting for me in the doorway of the chemo suite and I choose the lazy boy in the airy and naturally lit corner... there are tropical plants all around the chair and lots of light. The IV does not go in so well today and I catch the tears as they course down my face... too many pokes into what is now scar tissue. I have had so many pokes lately that I think I am getting an aversion to any kind of needle. I see the lady I met 3 weeks ago who was in the bed across from me. She is attractive and around the same age as me but as she is shown the chair two away from me, I invite her to choose the one adjacent. She agrees and we smile and introduce myself....what a small world - Megan knows a lot of the same women that I do and we begin to chat. I am wearing make-up and usually do just to rid myself of the horrible black rings under my eyes but I note that she is not wearing any and looks amazing. I take off my cap - it is too hot for me and she removes her head scarf.... so here we are, two bald beautiful 40 somethings, chilling in the chemo suite with no hats and lots of laughs... the beginning of another friendship with a kindred spirit!!
The Benedryl is run in first to avoid any complications from the last visit - this will take 10 minutes with a 30 minute wait until the Docetaxel is run..... this makes my total visit now over 2 1/2 hours as they will do a saline rinse after the medication goes through to try and save my vein from hardening or collapsing. My wrist is burning with pain from the IV being rammed in and is relieved by putting on the heat pad. The frozen mitts and slippers are on and away we go. Eileen has brought her copy of 'Vinyl Cafe' and reads a great short story out loud to me... I start to doze because the benedryl has kicked in and I strain to listen to her read. Megan is busy getting her IV inserted - she is not really crazy about the needles either and looks away. Her husband has joined us and we all converse back and forth... he is really cool and I know if Max had been with me, he would have totally liked his open and candid humor.
I have to use the washroom around the corner in the chemo suite and I recognize a man and his wife I have seen a few times before. They had smiled and we said hello before our appointment today. He turns to say hello - he is reserved with a shy smile and the accent is thick. I ask how is his wife - they are sequestered in a private room off the hallway and I can see she is laying down holding their daughter's hand. He says that she is not well, it is her last chemo but had a reaction that has made her ill but they have given her enough meds to make her feel better... likely the benedryl that I now must take with each Docetaxel. She smiles up at me from her bed as I move steps into the room. Hello I say as I smile down at her beautiful face. I tell her how beautiful she is and that I hope she is feeling better... she answers 'better' and smiles back. I ask if she will do radiation after and she nods. I blow her a kiss and let her know that I will see her soon.
I am finally done and I bid farewell to Megan and promise to find her on facebook - ahhh, another facebook addict!! When I get home, she has already put in a friend request and a note to me. I am looking forward to getting together with her really soon. I am hoping she will come to Wellspring with me. See you soon Bella Megan. Eileen and I go to the pharmacy to wait for the prescription I am to pick up. The Victory Program (Amgen - the company that produces the Neulasta) has picked up the costs that are not carried by my insurance company and I am relieved... I do note however that the cost of the shot is a few hundred dollars cheaper than just a few weeks ago??!! The woman and her husband ring the bell on their way out of the chemo suite - it signifies the last chemo and those in close proximity start to clap including myself and Eileen. The woman and her husband see us and smile broadly as he grasps her hand to leave... I blow her another kiss and smile.
Nick P. shows up mid-afternoon with tonight's dinner. It is a wonderful stew that the kids gobble up with the bread he has brought to soak up the juices!! Yum. Did I mention the lovely coffee pastry with a chocolate center - it was divine and the kids gobbled that up super fast. Thank you so much for your wonderful words of encouragement, the hugs and best wishes and of course the smiles!!
Wednesday 21 January
I am not sleeping and make my way downstairs where I pick up the hat I have been knitting for William... his is the fourth hat that I will have made for my family - it actually helps the brain to function by keeping it busy and the kids love the funky multi-colored wool. It is finished before he starts school and proudly pops it on his head as he heads out the door... later he will tell me that someone teased him because the hat has dark purple in it - William let's the kid know that his mother has made it for him and that she has cancer.... the kid quiets down and apologizes to him. Later, one of Will's friends asks if I can make him one.... :)
I am putting away paperwork and paying bills today because the brain is getting worse and I cannot remember where I put things and must write down notes as reminders. Tax season is coming up and I am trying to organize the slips so that we can get ours done as soon as possible. My long term disability has started and the cheque has been put into the account early much to my relief. It is a once a month payment and I must bear that in mind for next month when all my bills come in before the money. I am good with my money and am frugal to a fault when it comes to paying all bills and not carrying a balance.
I am not feeling overly well and spend the afternoon on the couch cat-napping. I do not get much sleep - the steroids tend to stall that department but today is the last day for taking those. I have heart burn but not as bad as when I went through the FEC.
Janice Mills has come to bring a fantastic spinach quiche - I have been craving eggs all day and amazed to find my wish come true!! The salad was a total hit as well. Thank you so much Janice and thank you for being such a great gal.... I wish I had gotten to know you better before all this happened - you are really very wonderful and thank you for everything.
Thursday 21st January
Not feeling great.... it is the 48 hour mark and I am feeling it in my head and my chest... the bone pain is setting in and I will take it easy today. I am knitting my funky wool hat to keep my head occupied. The hat has taken all day to produce and I will be gifting it to Eryn... it is in keeping with the one I made for Will.
Tonight is difficult emotionally... Miss Lydia slips into the tub with me and we put in a few bath bombs and laugh about silly things... she sees my scars and starts to talk about my cancer and the treatment I have just had. She knows that I am in pain and gently washes my arms and comes in close for a nuzzle. I am tired and sore and need to get out of the bath... my head is foggy and I ask her to read to me. She climbs in beside me and reads aloud then prompts me to read the book to her... she needs me to just be there for her and I read it as I cuddle with her. My knees are in a great deal of pain and is shifting through my shins. My arms will soon be aching and the only comfort I have is laying on my back with my knees supported by my body pillow. Lydia and I talk about her missing eye glasses - a student in her class has taken them from her desk and is having difficulty finding them after taking them home with her. We will have to wait a few more days to see if they can be located but I cannot afford to replace these brand new glasses.... I had to do that last year when mine went missing and then mysteriously showed up weeks later after I had purchased a replacement pair..... we will wait patiently...
Lydia wants to talk about death... mine and hers and how she doesn't want to ever die and how come we all have to die?? Is it possible to live forever? Will I get to see her grow up? Will I meet her children? Will Oma and Grandad see her grow up to adult hood? What happens to us when we go? Will I be able to see her when I die? Can I stay with her forever? The tears start and I hope the dark room doesn't give away the emotions that I am having a hard time controlling... she asks me if I am crying and as I turn to her I see that both of us are. She reaches out her little hand and I clasp it in mine - a lifeline to a daughter I love more than anything and who I worry about how she is doing.... so little and so much worry. Max knows to leave us alone and kisses us both good night and heads off to sleep in the spare bed in Mitchel's room. We cuddle in close still holding hands long into the night. I do not sleep - a combination of the steroids and pain is making it uncomfortable. I love you always, forever and a day, Mommy.
I worry about my children and I know that the week after chemo is always the toughest on all of us... they are unsure of what to do but come in to see me often to give reassurance and kisses - that has always been my job but now they are taking on that role and watching over me. I am so very lucky. xoxoxox
Thank you to Anne LaRoque for dinner tonight.... not a lick of it left!! You are always so busy and I appreciate the time and effort you put into everything you do!
Thank you to the supper club for once again coming out this week to assist with my family... it makes life so much easier. Thank you to Ray Cabak for the lovely card - it was wonderful seeing you on Saturday and of course at the cancer clinic where you volunteer your time helping out!!
Sunday, January 17, 2010
.... if you don't blog it, your chemo brain will forget it!! It has been a week of completing the renovation and keeping myself occupied with knitting.....
The renovation is nearly completed with Max putting trim on sometime later today when I am out visiting the girls at a baby shower. I am in some discomfort from being on my feet a little too long last night at our annual party but I would not have missed it!! Being around my friends from BoB and /A\ has done a world of good for my soul. Here is a recap of the week... or as much as I can remember!!
Tuesday 12th January
I am at Art Therapy today and feeling angry inside..... I am tired, worn out and the wound on my leg is not looking that fantastic... I am thinking that the oral antibiotics are not working and I will try to remember to make an appointment to see Dr. Annette. The girls are great and they let me talk out why I am angry and I feel guilty for feeling that way... my feelings are easily bruised and although the outside veneer looks tough - it is a great cover-up. It bothers me if I have hurt someone's feelings and I will often be upset for days..... I can however be like a bull in a china shop when it comes to getting my ideas across and that certainly does not help my cause. I have a good friend who is a fantastic sounding board who is not afraid to tell me what she thinks and we laugh about my flaws - I know that her advice comes from the heart and is said with the kindest of words. Thank you for always taking the time out for me K. - it got me through a tough moment!! xo
Thursday January 14th 2009
It is an early start to the day and it is back to the hospital for a 7:30 am blood test to be followed with an appointment to see the Oncology team. I am starting to feel better but my concern is with my leg wound which appears to be getting worse - it looks like a bullseye surrounded by an ever widening red ring.... I can see little red fingers creeping outwards and I can only think of the time I had blood poisoning from a wound in my hands that had not been properly cleaned after falling on asphalt - by the time I sought out medical help, I had red streaks up both arms that had reached the biceps and two wounds which had progressed to gangrene. According to the physician on call who saw me immediately despite the crowed ER room... I had about 6 hours before going septic.... not a comforting thought.
The Oncologist inspected the wound and determined that the wound had ulcerated creating a crater the size of a raisin just over the ankle and near a large blood vessel - a change in antibiotics was called for and a strict regime of topical antibiotic cream and bandages. My blood counts are back up to normal so I will go into round 2 of the Docetaxel.
Friday 15th January 2009
I have an appointment to see Dr. Annette Richard this morning but first I will visit with work as I still have some paperwork to complete - I am going on LTD (long term disability) this week. I bring in a round of coffees and hang out with the guys for a while - felt so good to be sitting in the office with everyone!!! Hugs later, it is time to go to my appointment and I have to run!!
Dr. Annette checks out my wound and is pleased with the course of antibiotics - this one is geared to staph infections. She also gives me a prescription for Mylan-Fluconazole 150mg - this is an oral yeast medication which she promises will take 24 hours to work.... the antibiotics have killed off all the natural bacteria in the bowel and elsewhere. If it isn't one thing... it's another :)!! One of her other patients comes in and I easily recognize the voice of a friend and neighbor from the old neighborhood. While Annette is busy, Barry and I visit.
Eileen comes to visit and spends part of the afternoon with me. Thanks so much for the coffee and your company. I am tired today and need to lay down - it will be an early bedtime but I know I will be up and wandering the house if I go to bed too early. The night sweats are getting worse and some nights I wake up with eyes filled with sweat that drips down my face.... even my skin feels uncomfortable being in it. Annette has assured me that this too will pass eventually and thinks that I could likely be forced into early menopause due to the medication - it might be temporary but she doesn't think so.
The evening brought with it a visit from Carrie and her daughter Anna accompanied by Lilly their Papillon. Thank you for the Jane Basket - which I totally love!! The blanket and chocolate bars (huge) are so awesome. I like the Mango butter cream - it really works!! Love you girl and Thanks for being such a great friend. xoxoxo
Saturday 16th January 2009
Our annual company get-together which our Recreational committee partnered with BoB Fm have put together starts at 6 pm tonight. I will be emceeing the event as president of the committee and Lindsay will be co-partnered with me. She is shy despite her outward personality and braves out talking to the crowd. She did a great job and was pivotal in obtaining prizes for the event. I had a fantastic time and I am sure everyone else did too. The casino play tables that we had came complete with great dealers and an equally fantastic pit boss. All of our attendees were given $10 vouchers to play the slots in the real casino on the ground floor which a group of us took advantage of later in the evening. I have not laughed like this in quite some time!! The evening came to a close when we left with an extra $25 in our pocket thanks to cashing out when the going got good. Thank you to everyone for the great hugs and best wishes.... I truly am a very lucky girl to be surrounded by some truly spectacular people!!! xoxoxox <3>
Sunday 17th January
Getting up was difficult today - I spent too much time on my feet and was out too late but I am grateful that I didn't have Max's hang-over. It is difficult moving about as I am very achy - no complaints - I would not have changed a thing about last night's event!!! I will get ready to go to a baby shower this afternoon but I cannot stay too long. I am excited for Melissa and her soon to be Ericka (great name!!) and know that her friends will spoil her rotten!! It was a good time and it was so nice to see Sandra, Serena, Pat, Lisa (hostess), Melissa and her sister and sister-in-laws. Wishing you all the best!! xoxo
Monday 18th January 2009
It was hard getting up this morning but a necessary trip to the Future Shop for cables - monster cables to be run through the pipes behind the wall..... a job that was made easier with soap!! I totally love the look of no cables and clean lines... only thing left to do is make custom shelving and a cabinet on both sides to house all the electronics. Now I can crash on the couch this week while trying to cope with the side-effects of the chemo!! I also picked up some cupcakes for Lydia's doll Rosie - it is her birthday today according to the diary that came with her!! Lydia will be excited to see that I actually remembered something!! I also still have to send out the thank you notes we made for Tracy and Emily!! I found a milk shake on my doorstep from Nancy - this is the second time we have missed each other and I was only out for an hour!!!
Thank you to everyone for your hugs this week and your best wishes. I am sending out the love and hugs and will see you all next week!! xoxo
Wednesday, January 6, 2010
.... it is the second week in January and the first week on the renovation project with our contractor and friend Jeremy. He has done all of our work in what is now our second house and we trust him implicitly. Today though, I am sitting in a tremendous draft and not liking it so I now must crank up the heat. The massive mirror that was glued to the face of the fireplace with bulldog glue needed very little persuasion with the garden hoe to come down in its entirety and strike the covered floor and smashing into thousands of pieces much to the shock of the one using the tool. In my estimation, the whole house moved and I was relieved to hear him yelling up the stairs that he was fine. The mirror was a 5' x 6' piece and horribly heavy.... which is why after seeing Lydia sitting on the floor under it watching TV last week made us decide to do the job immediately and now I know my instincts were bang on. No renovation job comes without an additional hitch... this one came in the way of a cold air draft which cooled most of the house despite the best efforts of the furnace.
Jeremy managed to pull the fireplace out and disconnect it only to find that the previous owner, like all the DiY jobs that he had done (and cut many corners doing) had struck once again. The interior fire brick had been excavated out to the outer brick layer and a quick look at the cracked mortar and the wind whistling through it told us where our cold air was coming from. We are now pricing the task as we go these days!!! He will be parging the interior of the bricks in order to quell the flow of air into our house. This now means that I will be hiring someone to re-install the gas insert if it meets spec sometime next week.... if I can get someone in that soon. I am praying that the lottery group at work wins us some big bucks!!!!
I am feeling more like myself and although I was able to go with Max to purchase the speaker wire at Rona, I had to supervise the installation - he did a great job and I ordered 2' extra without measuring ..... feels great knowing that I still have it!!
Despite the amended changes to the face of the fireplace - it has been wired for power and video cables for the new flat screen that we purchased. We also have power outlets installed on either side of the fireplace for the multimedia cabinets that will come sometime down the road. The fireplace is not in good condition and is very inefficient, so it too will be replaced this week (January 11-15) by a fireplace specialist. The projected costs of the project have exceeded what we had initially anticipated. It essentially amounts to the vacation that we were unable to take this past year that we had budgeted for. The kids managed to help Max paint the room with the paint I had bought last year for our bedroom. I helped out when I could and the results are nothing short of truly wonderful. It has given me renewed energy and strength and I look forward to planning out another project for later this year..... bathrooms perhaps. Our house is like my journey - always making changes and expecting a great outcome!!
Saturday 9th January
I walk down the steps into the family room and realize that my ankle is aching. The nurse had come on Wednesday to check my blood pressure and inspected the small wound on my right ankle which I managed to get the week before on my walk with Max - boot rub. It looked fine then but when I took off the band-aid she recommended I put on with antibiotic cream, I was shocked to discover that the red ring around it and a sensitive ankle meant only one thing - infection. I asked Max to fill out a standing prescription my doctor had given me to fill in case of emergency..... this seemed like a great time on a late Saturday afternoon to do such a thing and then get to the emergency room when we could. As it was, we got to Emergency at 9 pm and waited until 11:30 to see a physician after being segregated into an isolation room with Max. He tried to get comfortable in the chair provided in the room while I tried to rest my eyes... I am normally in bed early in the evening. Fortunately my blood test checked out good for my immune system but it needed some immediate help which came in the form of an antibiotic drip. We finally got to leave at 1:03 am. I am to continue the oral antibiotics I started taking prior to arriving and remain eternally grateful to a very smart doctor!!
I consider myself fortunate - the lady across the aisle from me in the other isolation room was informed that her immune system had taken a nosedive and was registering 0.... this of course means that she cannot fight any infection or cold that she may contract. All personnel going into the room must gown and mask up in order to enter..... so when she started calling for a nurse because she had to pee and couldn't get out of bed - she wasn't able to hold it in long enough for the nurse to gown and mask up and run in with a bed pan. According to the conversation in the hall outside our rooms.... her last chemo was at the end of November and I wonder how it is that her system could just drop out like that?! Again, I am grateful for the Neulasta shot, without which I would have had an overnight stay at the hospital to try and fight off the infection. We were both in the Adult emergency and not in the Oncology emergency.
I was ecstatic to be allowed to go home and we dropped into McDonald's on our way home.... Max pulled out his happy meal toy - a girl chipmunk who says 'it's so beautiful' and we just laughed all the way home. I love you Max, thanks for the date.... perhaps we'll do dinner and a movie next time?!
Sunday 10th January
A long anticipated arrival of my in-laws and what a great visit!!! I love my in-laws sooooooooo much and am so in awe of the lovely Christmas gift they have brought for me - a small wooden Christmas tree complete with teeny tiny decorations from Germany when they had visited there earlier in 2009. Lydia received a beautifully hand crochet blanket that Mom had made herself. Thank you so much for coming to visit, we love you so much and look forward to some pool time with you both!! xoxoxo
I am very tired today and need to nap when they head back home. Max has a hard time waking me up but I manage to crawl out of bed 4 hours later at 8 pm. I ate a little bit but am still really tired. I should have no problem going back to sleep.
I want to thank my mother for the lovely angel she has sent me in the mail and for the steady stream of cards as she tries to maintain a more personal contact from a distance. She is having a hard time emotionally with my illness and we have talked on the phone quite a bit over the past few months. My father is quiet but I know he is worried so we talk about stuff - usually a blend of engineering, main news headlines.... anything but what I am dealing with - he is slowly losing his faculties and can't really remember what we talked about anyway... he is just happy to hear my voice. Perhaps we will make it out this summer for a visit. This year is also a wait and see attitude.
Wellspring - in Art Therapy this week I mentioned to the ladies that Gwen had been on my mind for the past month and that I was worried about her. Wanda (our facilitator) mentioned making a card for her and we all jumped at the opportunity to write a little note personalized with our fingerprint in the acrylic paints we were using - great idea Kim. Wanda drew a single fir tree on the front (Gwen loves all trees and it is what you will find her painting at every chance she gets) with 5 red cardinals all flying up to land on the branches. With Wanda's characteristic giggle she shows us the completed drawing and promises to mail it off as soon as possible through the organization - they will know what address to send it to. Yoga this week brought lots of hugs and smiles from the girls and a great cup of tea afterwards. Valerie (our instructor) gives me a hug and is astonished that I am well enough to join the group this week - she is so amazing and it could be a full week of the worst weather imaginable but Yoga Day is the day the sun almost always shines!!!
Thank you to Sandra Moyer who came for lunch on Friday!! It is always great seeing you and your smiling face. I miss you so much. xoxo
I am looking forward to this week - it is a week to tidy up details for our adult party at work, the family room being finished and a week to complete all unfinished knitting projects before chemo on the 19th..... only 2 more left!!! Wishing everyone a week of laughter and good times. Let those around you know how much you care and do a random act of kindness. xoxo