Tuesday, December 29, 2009
.... I am up early, of course!! It is just after 4 am and I am fidgety so I get up and throw on a sweater to go downstairs... a few minutes later - I have the kettle going and am neti potting my nose due to a fit of sneezing just prior to rising. I need to occupy myself and so I empty the dishwasher and make a non-caffeinated pomegranate and blueberry tea with a scoop of fiber...... I am feeling good today, just in time for round 4.
The first three rounds consisted of FEC this next three rounds consist of Docetaxil..... in short I am on the FEC-D regime. The fear of the unknown is always anxiety provoking. What will it feel like, how will I cope with any side effects that come up? I don't like having cold feet and hands.... which is why I just cranked up the furnace - 62 degrees is bloody cold!! Will they put the ice packs on my fingers and toes and just leave them there for hours all in a bid to save them from turning black and falling off? Yikes.....
December 29th 2009
My wonderful husband is accompanying me on this next step in my chemo journey. We leave the house early - I never want to be late and the weather is snowy leaving the roads slick so we take my little vibe with the snow tires to the hospital. We get there at 8:40 and head over to the Tim's on the bottom floor for a coffee before heading up to the chemo suites. I have remembered to give Lydia her antibiotics for a nasal infection prior to leaving and now I am taking my third double dose of steroids with the water I have brought with me. I arrive at the chemo suite reception desk and receive my next booking and the pager.... I have brought with me a bag of Hershey's kisses and grab out a handful of chocolates for the busy ladies behind the plexi screen and am met with a group of smiles.... ah chocolate - the elixir of life made better by a cup of hot coffee. I take a seat next to Max and I look down at the paper detailing my next appointments as I shove the pager in my front pocket. What??!! 'Max, they have scheduled me in for the day before our company party and only 17 days after this chemo??' He looks at me and mentions that I should go over and get the appointment changed.... I look at him and think, yeah, there is one good reason why you bring someone with you to your appointments and I head over to the reception desk and explain the issue. No problem, we will bring you your new appointment when you go into the suite. Thanks Max, good thinking. I am now relieved that the only 4 days I will be feeling good will be spent in the company of the people I have worked with for the past 16 years and the friends that I dearly miss.
We head into the chemo suite after a 40 minute wait which is explained by the nurse as she puts in my I.V - the pharmacy which is attached to the chemo suite had a 4 day rest for the holidays and usually put the meds together the previous day... they arrived for work at 7:30 in the morning and were busy mixing the chemo cocktails. I will have to wait a few more minutes as my cocktail takes a few hours to prepare . The suite starts to quickly fill up within a half an hour after getting comfy in the recliner. I am hooked up to the Docetaxil after receiving a few minutes of saline and the nurse reviews the side effects with me and to indicate to her if I notice any changes in my physical well being such as chest pain, nausea or aches of any kind and of course a frosty set of insulated mitts and slippers to wear during the time the Docetaxil is dripping into my veins. The cold instantly takes and bites at the end of the toes and fingers. The slippers are so cold that Max is joyfully scraping the frost of the tips!! This is all done so that the capillaries feeding the appendages will stop the blood-flow thus no chemicals to the ends and consequently save the nails. Apparently you will notice within 48 hours if you were cheating.... the nail beds turn black and the nails should disengage within days thereafter. My hands are still numb from the previous FEC dosage I took weeks ago so the hands do not feel the cold as much. My big toe on my right foot is aching like mad and I ignore it and look around the suite which has begun to fill to capacity.
There is a young woman across from me. She has on a mask and is pulling it down to cough into her hand and then to blow her nose.... I will have to remember to do a neti pot when I get home - the whole premise for the mask is to cough into it... I send Max out to deliver some more of the Hershey's kisses to her and to the lady next to us - he is shy and blushes when the one lady flirts with him. He meekly returns to his chair and chats with me. Another lady is escorted to the end bed kitty corner to my chair and she looks my way and smiles. I smile back and she says hello. The lady next to me also says hello and begins a conversation which at times is hard to hear with all the ambient noise in the room. She is in her late 60's and has had extensive surgeries removing many regions of cancer from her ovaries to her lower and finally her upper GI and stomach. Her cocktails will last a total sum of 6 hours and it begins with three bags of Demerol and then a bevy of other bags..... she says she stays long enough to watch everyone come and go. Sad really when she continues to say that years ago she lost her 35 year old son to colon cancer which had travelled up to the stomach and was given 6 months to live - he managed to pass a year later and left behind young children. If that wasn't enough grief - her young grand daughter was diagnosed with leukemia but managed to survive her ordeal. She tells me that apparently the cancers they have are not related.... makes you wonder how this all happens in one family?! Her husband shows up with a sandwich for her to eat and he is entertaining and quite jovial. They have been through this many times and he kisses her and waves to us as he makes his way down to another part of the building to do his thing while he waits. The woman across the way in the bed has caught my eye and she is saying hi again and I say hi back and smile - she is maybe a few years older than me but hard to tell when the chemo takes so much of your facial appearances. I take in a deep breath and am caught by the fact that the right side of my chest hurts. I take a few more breaths and realize that I am indeed experiencing some additional issues and I motion Max to get a nurse... he is anxious and approaches two busy nurses and I tell him to wait, there will be one freed up soon. He comes back to wait and moments later flags down one of them. She immediately stops the drip and fills a syringe with Benedryl. I am having a common reaction to the chemo and it needs to be dealt with immediately - as the nurse mentions - the body's way of saying Whoa!! I am just a few minutes into finishing the hour long drip and realize that if it had not happened when it did, I may have been walking out of the building when it happened. She tells me that it will take immediate effect and that I should be feeling woozy - no kidding, I think it took about 30 seconds and about the same time that I had to go to the bathroom. Another good reason to bring your spouse with you - he managed to get me there and assist with watching the door and then helped me back into my chair. Now the slurring of the words begin but the sleepiness did not start up right away - I saved that one for home when I passed out for about 2 1/2 hours!! The Docetaxil is done and a 10 minute saline wash is left to run. I have had my blood pressure taken no less than every 10 minutes and I find out that this is the best way for them to monitor how my body is reacting to this drug - it was going up and down like crazy and finally after the Benedryl injection it settled down.
It is finally time to leave at 11:55 am and I am hungry and make a suggestion to head off to McDonald's on the way home. I cross over the room to the lady laying in the bed who has said hi to me a number of times. I place 3 Hershey Kisses in her hand and ask her how she is doing and how many more visits... she is on the same regime as me and has 3 to go... I have 2 to go. I wish her well and to have a Happy New Year. She smiles up and thanks me and wishes me well - perhaps I will see you in 3 weeks I say. We smile again and I am off dispensing kisses to the other patients on my way out. My husband waits at the door and I catch his grin as I place my hand in his. Only 2 more left I tell him...... only 2 more. One day at a time and one step at a time.
Dinner comes by way of Nancy Allen!! Thank you for the lovely dinner. I am on a mostly liquid diet but I did eat some of what you brought. I am sorry that I was out cold when you dropped in - perhaps you will come again when I am up and about!! Sending love and hugs.
William is sleeping over at a friend's house and comes by to pick up some of his gaming equipment with Nick and his cousin. They all traipse into our bedroom where we are coloring with Lydia and Max and Mitchel are watching music videos. I get out of bed to say hi to the kids and the cousin looks at me and expresses his regrets about my illness.... without a breath in between he tells me that his mother has just gone through her journey and had a recent scare that they thought she had a reoccurrence. He might be all of 14 years old but has the look of someone much older when he speaks. I noticed that my children have matured quite a bit since my diagnosis..... diversity has a way of doing that to people, no matter what the journey. It is what makes us who we are and makes us care about others.
I am up early blogging - my stomach is boiling but not nearly as bad and I am not on the crazy anti-nausea meds this time and don't think I need to be. Like everything these days - I just wing it and take what I need when I need it.
December 31st 2009
My memory today and ability to put things together has been extraordinarily challenging. The bone pain has begun in my skull and jawline. I have numb teeth?! Weird feeling and I am slurring my words.... just thankful that I am not drooling .... at least not yet. My stomach is finicky today and what felt comforting a few minutes before causes pain just a few mouthfuls later. I am eating very light foods, mostly soups and hot drinks to get some nutrition in without slowing down my digestive system!!
I manage to lay down before going out for a few hours in the evening to our neighbors house but quickly realize as I take a hot shower that the pain is starting in my shins and knees and spreading upwards. I have been taking pain meds for the past 12 hours in anticipation but they are just over the counter and alternated - Tylenol extra strength and four hours later, an Advil Gel cap. This just takes the bite out of the pain as I am to discover later in bed. The heat waves moving through my body come as quickly as they leave and I find myself instantly soaked. I cannot lie down for long before the mini pain explosions erupt from within my body. Some are deep within the bones and others flit around the muscles in my chest and stomach. It would be akin to experiencing a fireworks display within your own body - not knowing where it will hit next....
January 1st 2009
I get to spend time with Mandi chatting and hanging out on the sofa. It is so good to have a friend drop by and just spend time talking about anything and everything. Dinner was fabulous - the mediterranean salad is now Max's favorite. Lydia had so much fun playing with Ava and loved the stuff she brought over with her.
Saturday 2nd January
I could describe this day in a few words - complete emotional breakdown..... I was left alone too long today - my eldest is always gone out it seems to somewhere but here, Mitchel was at a movie then a sleep-over with a friend and Max had been gone with Lydia most of the day. Sometime around 5:30 p.m., the panic started to well inside and the whole idea of being abandoned and alone struggling to heat up dinner by myself was too much and the body racking sobs began. I tried desperately to get ahold of Max as my head swam, the sweats kicked up and my stomach foamed.... he picked up his phone but I could tell by the sound that he was still at the movies even though he had left at 2 p.m. but he wasn't answering the call. Half hour later he called to tell me that he was on his way but I could barely get out the words that the text message I had already sent said - no longer coping. He rushed in a few minutes later apologizing as I continued to sob uncontrollably - don't ever leave me alone again this long, He held me until I could stop crying and promised to never leave me alone that long again..... this has been my lowest day to date.
Sunday 3rd January
As promised, my husband stayed with me most of the day and the kids joined me for a marathon of 'Pirates of the Caribbean'. Thanks to Montea Sherritt for the lovely dinner that the kids wolfed up and thank you for spending time chilling with me. It is so good to see you and I miss you.
January 4th 2009
It has been a week since chemo and I find that I am still in pain but managing with a concoction and timing that suits my own needs. The pharmacist suggested alternating over-the-counter extra strength Tylenol and Advil every 4 hours but the chemo brain could barely keep track of what I took last without writing it down... never mind trying to struggle in the middle of the night by myself to find the right bottle. I found that if I took one of each every 5 hours, I could keep the pain under control effectively without getting up in the middle of the night.... that being said.... the night sweats seem to be getting worse and the period I expected is still causing pain but has not yet started - it is now 7 days late. Did I mention day sweats as well? Within seconds of a heat flush, I am covered head to foot with a sheen of clammy sweat that makes me feel horribly uncomfortable when it starts to cool. I am not sure what to wear anymore as everything I have on makes me either sweat or feel too cool. Last night, my desperation peaked with the desire to go outside and walk off the belly bloat that had been forming since lunch. I was so uncomfortable that the thought of going through snowbanks with deep leg pain had more appeal than sitting in the warmth of the kitchen tolerating the belly which was growing in size and not emptying into the intestines..... things slow down when you do. The walk, albeit painful to the legs and back was just what i needed and I sucked the cold air deep within my lungs...... ahhhhhhhhhhh so good to be alive!!!!! Max held my hand tightly as we made our way in the middle of the street to walk around the block. We did a good size circuit which finally got things moving in the right direction and made me feel reconnected with the world even though the brain is still on a siesta!
Today is a new day and looking forward to a small home reno project that was planned for quite a while - small job but a needed boost for the morale. The fireplace mirror is coming off and a new mantle and stonework is being put down. Eventually there will be built ins on either side of the fireplace and a multi-media center complete with large screen TV. I am a big believer that everything works out in the long run and that no matter what, it is often best to sometimes follow your heart and do what makes you happy... we all too often put things on the back burner waiting for a better time or when we have more money...... I had my babies when I had so little and still made a good life for them and I went with my instincts and got the house and the lifestyle that my family and I enjoy.... it really is best living life in the here and now while making goals. I am realistic and practical balanced with belief that it all works out somehow.
Thank you once again to the supper club for your support and fantastic meals.... if I managed to miss thanking any one individual it is primarily because my memory these days is short and without the blog - it would be non-existent. It's funny how I started the blog to keep track of my progress and now it has become my own valuable resource. I simply write down the highlights and discuss them with my Oncologist at my next appointment. I hope you all had a wonderful New Year and hope that you put your heart wish out there and that they come true for you. Heart Wish - it is the wish your heart desires the most.... once you acknowledge what it is, it is easier to realize it in your future. Sending love and best wishes this year, and every year.xoxoxo
Friday, December 25, 2009
.... it is Christmas Eve and I am in the cancer unit at 7:20 am getting ready for my blood tests... it has been a trying week and the cramping in the lower bowel is presenting itself - the receptionist is just opening the kiosk to serve me and notes the look on my face. She has promised to get my paperwork together and points me to the nearest washroom. The pain comes in waves and I am not sure how the morning will play out and I am relieved that the place is quiet. It seems like forever before things settle sufficiently to risk leaving the safe quarters of the 'restroom' behind. The receptionist has the requisition ready and promises to make a note to the nurse that I have located myself at the far end near the washrooms to await my appointment - she hands me a pager which I shove into the front pocket of my jeans. There are only a handful of people and as I make my way back to the washroom a half hour later, my pager goes off and I turn around to go and greet the nurse at the far end who is craning her neck to find me. The twisting stops as I stride over to her.
I approach the nurse and she smiles at me and leads me off to get weighed. I have lost a pound and I find this incredulous considering the massive bloat around the middle. The nurse seems concerned about the weight loss and eyes me when I let her know that it is likely more than that. She has located me in an exam room around the corner from the washroom and begins to ask me questions about my visit to the oncology emerge ..... did you have an xray to confirm the blockage in your bowel? no, I did not.... I have diverticulosis. She is deeply concerned and asks more questions - I am not comfortable with the scowl when she indicates that I need to keep on top of it when on the medications given to me while on chemo..... she was surprised that it took 5 products and 7 days later to get a reaction.... me too!! I mention that I like her striped Christmas socks... better to divert her attention .... she tells me that one of the nurses has a basket of simple Christmas gift that she wraps and hands out to the staff she works with... of course there is no such thing as a 'free' gift - everyone has to wear the gift given to them including the unfortunate recipient of the thong so everyone can see it. Peals of laughter later, she wants me to wait to see the Oncologist.
I am met by a resident who goes over the same information as the nurse and confirms there is a positive micro-bacterial infection picked up in the blood test I had taken an hour previous and asked if I was still taking antibiotics..... he wants me to wait. The doctor appears a few minutes later and the look on his face is serious and dark. He wants to go ahead with the next dose on Tuesday and wants my assurance that I will get the bowel under control and I assure him that I am doing everything in my power. He indicates that the infection is in the bowel and there is a slight chance it can pass into the blood stream if another blockage occurs... this can be dangerous if the immune system is down and cannot fight the infection that can get out of hand quickly - Neulasta shot will be my saving grace.... this time the bone marrow will be affected along with the muscles. In short, the pain will be excruciating and since I am not cleared to taking narcotics to control the pain (because they will also cause constipation along with the anti-nausea medication) I have to take a combination of Tylenol and Advil at the same time - don't let the pain get away he warns me. I feel a sense of dread mixed with what feels like fear. I can handle a lot of pain but the look on his face tells me that I have no idea what I am about to deal with. He takes his exit and reminds me to keep on top of things. I will not hesitate this time to seek medical attention immediately should anything go wrong. I make a mental note that no matter how hungry I get while on the steroids - I will vow to eat something closer to baby food and light meals consisting of cooked vegetables and fruit. No raw vegetables at all - this causes bloating and since most vegetables cannot be properly cleaned... this will avoid any issues of contamination.
I drop by work on my way home and notice that it is quiet - most people are taking advantage of the 4 day weekend. Hugs and hellos to those left behind and my traditional passing out of the candy canes and Hershey's kisses. I am relieved that I too have a very long weekend to enjoy with my family before the next treatment.
The evening brings with it friends from the old neighborhood who have ventured out to spend their Christmas eve with us. Barry has had surgery and hobbles in on crutches looking painfully thin but breaks out that ear-to-ear grin and kisses and hugs to all of us. He has been through so much and has been to hell and back... he knows my journey and knows the right things to say. He reminds me of my personal strength and notes that he has all the confidence in the world that I will pull through this and get to the other side. I have had some really dark days over the past few weeks and I am trying to keep it at bay. Terry smiles and re-enforces what his long-time friend has already expressed. They have known my children for a long time and are stunned how tall Lydia has grown and remind me of the trying first years of her life when she constantly cried and was needy..... now seeing her independent and extroverted nature has them both smiling - she looks like Dad but really takes after Mom!! I am proud of how my children have grown and they remind me how much they look to me for guidance and strength.... this is why my dark days stay hidden like the vines that surround the cluttered house in my dreams. I am honest with them but they do not need to see the fear or the tears that the hardest days have to offer.... sometimes it is hard not to brim with emotion.
We are all excited as we stand around and watch the official Norad site for the latest sightings of Santa and send the kids to bed. Lydia is so excited that she can barely contain herself. William is at Eryn's to watch a movie after the two of them had joined us for Christmas dinner I had prepared earlier in the evening. Spiral ham, scalloped potatoes and fresh steamed green beans with gravy, cranberry jelly and my home-made applesauce is completely devoured!! Our company leaves soon after Miss Lydia heads upstairs and Max starts wrapping gifts behind the bed so that I do not see anything - he is excited - this is his first year of being solely responsible for gift shopping. Good thing I encouraged him to save money in a savings account because he had enough to cover our Christmas budget and one less thing to have to worry about with me heading into long-term disability. The phone rings just as I am getting ready to wrap Lydia's doll - William is talking and I can hear Eryn crying on the phone.... her mother is having a melt down after imbibing and she is taking it out on her. William is asking if she can stay over and tells her to get her coat on. No worries, she can come here. Eryn lets her mother know where she is going.... this is becoming old hat and it is heart wrenching for it to fall on the holiday that families are celebrating. They walk through the door 20 minutes later and I just hold her while she sobs... 'thank you for having me', she says in a staggered voice, between tears. I have made a bed for her and bring her some toiletries to clean off her make up and to make her more comfortable - she looks up with those big dark eyes and with tears still welling up thanks me again for taking her in. I smile and say not to worry, we love having you and you get to spend our special holiday with us. It is a sad day when a parent resorts to telling their child that they wish they were never born.... she is wise enough to know that her mother does not mean it but it doesn't make the shame go away. William seeks me out and thanks me - I tell him that this is what Christmas is - it is not about the gifts... it is about helping others, it is about family and always trying to do the right thing. In religion, it is about Christ who gave the ultimate sacrifice to save our souls. I just wish the spirit of the season would go 365 days a year.... I wait for all the kids to be safely tucked in for the night and make my way downstairs... Eryn will need a stocking and I have enough pink fleece material left over from Lydia's projects and I sew one for her and stuff it with the little extras that we always manage to pick up just in case of emergency. It is late and I am exhausted, I will just have to put the finishing touches on it another time... like her name!!
I am up at 4 am and in pain. It has become part of the schedule and I shake it off as I make my way downstairs to take my medication. It is quiet and I am so amazed that it is another year... so much has happened this year and as I take in the sight under the tree I am reminded again of the gifts that I have been given - the gift of friendships and kindness from those around me and the love of my family, of discovering what is really important. I smile as I head back upstairs to the warmth of my bed and snuggle in to my sleeping husband..... he snuggles back. Thank you to my husband for being there for me this year and all the 11 years we have been together. I will remind him in the morning that we decided to be partners on that Christmas a lifetime ago and we never looked back. We have grown so much together that I can tell what he is thinking just by looking at him. We kiss more and we hold hands as much as possible.... we are more emotional and less shamed by the display of tears. He is my soul mate. The alarm wakes us up at 6:30 am and I giggle because the kids are still in their beds dreaming of sugar plums :). Lydia is the first to get up and at the reasonable time of 8:30 - she quickly scouts the dining room and living room and announces to each of the siblings that indeed, Santa has come. She is surprised and excited to see Eryn and grabs her hand saying that there is an extra and very pink stocking for her.... Santa knew just where to find her!!! It really has been a wonderful Christmas this year. Lydia loves her doll and totes it everywhere today - she is a mommy and I witness her telling her new 'child' all about her mommy in a proud voice when we hunker down to read her now favorite book 'Glad Monster, Sad Monster'. Thank you for all these moments and the many more that will come.
December 26, 2009
Since I am not a Boxing Day shopper, Max, I and the kids spend the day doing whatever we feel like. I am making friendship bracelets and after convincing Miss Lydia to sit down and do her own project with me.... it felt like pulling teeth, like Mitchel, Lydia is daunted by new things. She easily grasps what needs to be done once she decides to try and eagerly calls to Max to come and do one with us. I get him started and they both sit with me and laugh and chat while doing our craft. I am doing more crafts now than I have in years.... it keeps my mind off this next week and it is something I have always done... when I wasn't so busy. William spends most of his time chillin' with his posse and Mitchel loves to play challenging games on the computer.
December 27th 2009
Max takes Lydia and Mitchel tubing at Boler this afternoon while William accompanies me to FabricLand to find material to make pajamas for Lydia's doll. Will is amazed and intrigued by the store and finds plenty to look at while I pick through a catalog for doll clothes. I have found three packages of patterns and head over to get assistance. One of the ladies notes the ribbon pin collection on my purse then points to the breast cancer sweatshirt she is wearing. I smile as I tip the brim of my knit cap upwards to reveal my bare head and she grins and gives me the biggest hug ever!!! She asks me where I am at in my journey and we begin talking like we have known each other forever!! She is part of the RowBust dragon boat team - one that my doctor Annette Richard is a part of.... small world. They are just starting up their training and would I be interested in joining? Of course I would but I need to wait to see how my recovery is and of course it will take some time. She does not want to frighten me but does tell me that the pain she experienced with the Docetaxil I will be receiving on Tuesday. We will keep in touch via email. We hug again as I depart to continue my search for material. Will helps to carry and select fabrics that will look good on her doll and I bear in mind that the patterns must be small enough to reflect the size of the doll. I am an amateur when it comes to sewing but my friend Brenda A. is not and a quick phone call and she drops by to help me make the pajamas and does an amazing job!! I learn so much from her and she is incredibly patient as she shows me all the tricks and guides me through the vague instructions. I sew what I can and watch as she gathers the sleeves to install in the opening. I sew on the buttons and the snaps underneath. I feel confident about tackling the bath robe and later cut out all the pieces to sew in the morning from the special pink tie dye fleece.
We tuck Lydia in with her doll 'Rosie' in her new pink pajamas and she smiles at her little friend tucked in beside her. Max knows that I am in a hurry to complete all outstanding projects before I lose the use of my hands due to numbness and joint pain with this next chemo. I am daunted and anxious about this next round and I can see the worry on Max's face as he lets me know that he will be reading in bed. I hand him the book that my good friend Jeff lent him and the one he has not opened until now. I think part of his denial was tied to the fact that Jeff's wife passed after a courageous battle with breast cancer but mostly out of fear that if he read it then maybe he would have to face all the shitty details. He will be going with me on Tuesday and as he begins to read some of the chemo reactions he looks up to me with tears in his eyes and lets me know that this journey really sucks for me. It sucks for all of us and all of those people who also have to go down this road. Part of me wants to book a flight to anywhere but I won't.... not enough money left over from Christmas giving.... I promised not to do any research but the doctor suggested I read up about the Docetaxil and I wish I hadn't done so as I go through the list of life-threatening side effects...... dammit - the cure almost looks worse that the cause. Oh well, one step in front of the other, one day at a time. I can do this and will do it like all challenges in my life - head held high and determined to succeed!!!! We make a list of all the things I will need to have with me during this next round - distilled water, ginger ale, hard candies... anything that will bring comfort.
This will be one year that I will not go out for New Years celebrations but I look forward to many more healthy ones in the future.... small price to pay, I'd say.... with that - I wish everyone a very Healthy and Happy New Year. Sending love and hugs to all those that made my 2009 one that will be unforgettable - your kindness, friendship, love and support have meant the world to my family and I. Bless you all!! xoxoxoxo
Sunday, December 20, 2009
.... Christmas is coming and for the most part I am ready to go.... although I did not do much in the way of baking (I cheated with my favorites from a specialty store) I still have treats and the presents that I purchased online.... not to mention the traditional spiral ham from Loblaw (pronounced in our house - blah blah). I love Christmas and mostly because it is spent with my family!! It is the first year that I do not feel rushed or that I am forgetting anything and I know that it will be such a great time. I have left out the doll catalog and Lydia has been hounding me now for days and she has been circling all the things she wants to go with the doll she is sure she has willed herself to get...... a few feet away tucked in a hiding spot sits the very items that she has circled and it is hard not to play the game of 'whatever will you do if you do not get it' she has promised to promptly leave. I am glad she will be staying!!
Friday 18th December
Feeling a malaise today that has me in tears by late afternoon which spilled over when Max calls...... I am in agony and I fear I have a blockage in my bowel... my temperature is rising and so is my concern. I have a condition which is now complicated and will compromise my well being if something is not done to correct it. Max soothes my worry and makes an attempt to come home as early as possible - he has gone to the pharmacist who has called to talk to me. Max has brought home Ducolax and I have taken 2 of these pills but the temperature begins to spike past the 38 degrees C and a call to the emergency on call Oncologist. The doctor will call me back - they have to determine whether they have a bed available. The phone rings a minute later and I feel guilty for hanging up on my mother-in-law and call to Max to give her a ring on his cell.... now let's see, that is probably the third time I have hung up on her!! Wonder if she is sensing a bit of a trend here.... nothing personal Mom :) xo The call comes in a minute after that and there is a bed available - we are given the tower number, floor and bed number - a direct route that I am grateful to have been offered as another stab of pain hits me in the left side just under the ribs. I have a nurse meet me and she quickly takes my blood pressure or tries to but the machine has taken on a life on its own and now the pain in the ends of my fingers quickly diverts my attention away from the reason I am there.... the renegade machine can't get a read and continues to tighten the cuff - my fingers instantly jolt with lightening bolts of pain.... still no pressure reading despite the instant blood loss to my entire limb!! Oh well, time to do a manual read. Blood tests need to be taken to see if my counts are up and to see if there is any sign of infection and of course urine. The patient in the bed next to me is not well and his eyes flicker open as I pass by the opening in the curtain to get to the washroom. With no real distinctive facial features and the typical yellow skin, I would be hard-pressed to recognize him in a line-up. The Doctor comes in a few minutes later and after an examination has noted that I have a blockage and he will try to determine where.... it is of course out of reach and he is unable to do anything for me other than antibiotics and oral medication. I am grateful that I am not spending the night. Max goes to the pharmacy and has picked up no less than 5 meds ranging from mild natural senokot to an equivalent to intestinal draino.... we start off easy....
Saturday 19th December
The day is spent with Max doing some errands and staying out of the population.... I need to walk and keep moving at least physically. I run into an old neighbor of mine and she has already heard about my journey and quickly reminds me that she is now 21 years cancer free... she had her breast removed but never had reconstructive surgery and never bothered to wear a bra to hide the obvious... she is in her early 70's and knows that that is the least of her concerns. She has always had a positive can-do attitude and we hug after a few more minutes of conversation. My journey is filled with people who amaze me and I am learning so much.... like the breast we both had cancer in also gave us grief with blocked milk ducts when nursing which became infected - Mastitis http://www.mayoclinic.com/health/mastitis/DS00678/DSECTION=symptoms
She is not the only one to tell me this and it has been my suspicions for quite a while now..... it was painful nursing and I could never seem to clear the one duct no matter what. Any sign of this in a nursing mother should be seen by a doctor.
Very little movement going on and I am concerned - time to step up the meds and increase the fiber..... you would think this would be effective....
I attend an annual neighborhood gathering for a few hours but fatigue calls to me and I wish all my wonderful neighbor friends a Merry Christmas and a promise of more gatherings around the pool this summer. Thank you Sue for always being the consummate host and for making the fresca (non-alcoholic) drinks yummier by putting it in a fancy crystal fluted glass. xoxo
Sunday 20th December
Fully expecting that the 48 hour mark would prove to be a medical milestone...... still waiting but this time I have used the big guns....... and still waiting. Once the blockage passes (in its own good time) I have been warned that the next round of chemo will be using a considerable amount of anti-nausea medication that will only increase the problem so I have to get it under control and be diligent.... I have just over a week to achieve this goal. Apparently this is a very common issue and most patients are not seen until the pain becomes intolerable.... hmmm, sounds familiar. It is not a great topic of discussion but still needs to be addressed and not forgotten.
My face has broken out - a clear sign that toxins are not leaving..... sigh!!
Tuesday 22 December
Still battling away at clearing the intestines and have virtually given up on eating very much... the doctor said it would clear within 48 hours and unfortunately I have reduced myself to taking the last ditch effort medicine affectionately named 'dynamite'. After 3 days of this and other fiber etc to try and clear the block - I am gaining little ground - just enough to gain some comfort but still feeling like I ate a huge Christmas dinner.
I spend the day doing decorations with Lydia and watching the movie 'Inkheart'. What I really want to do is to go outside to play and have decided that tomorrow, we will do just that despite the fact that there is no snow outside other than a slight dusting. Christmas is in 2 days and I can feel the excitement in the kids.... if only, Mitchel says, he did not have to wear the paper mask he has had to over the past 3 days. Unfortunately he has acquired a cold and must now protect me from contracting the same one... so far so good but it is hard on him and he is struggling with the whole idea but his cough and low-grade fever means he will likely be wearing it for another few days. I get a call from the neighbor whose young son has broken out in chicken pox and she is fearful that I will now get ill as she had brought him out to the neighbor gathering on Friday night. No worries, we have all had the chicken pox...
Max and I are getting ready for bed and I head off into the shower. He is watching You Tube music videos when I slip into the shower. I still use shampoo on my head despite the fact that there is the odd patch of stubble.... it was recommended so that the soap doesn't dry out my scalp like it is doing to my skin. I am looking slightly yellow - sallow cheeks and dark rings under my eyes. I am toweling off and ask Max to please bring me my medicine... it should be on the counter downstairs - hard to say anymore because I will put something down and a minute later forget where it is and then spend a few frustrating minutes trying to remember.... chemo brain.... I open the door, after shoving the cap on my head - it gets cold fast, and realize the Bryan Adams song that is playing is off an album that received no real air time because of the Lyrics but it is one that Max used to play for me when we were first dating and the tears brimmed and then fell in torrents down my face soon followed by sobs and by the time Max reappeared in the bathroom he was surprised to find me red-eyed. The song reminded me of a carefree time in our partnership when I wasn't scarred, bald or disfigured by bloating..... life will never be the same ever again and God, what if it comes back?? I have been reading a book that talks about the cancer journey with husbands and wives and one of the last chapters discusses the reality of passing and I feel for the husbands that stand by their wives in their last days and I think about my children and my soul mate and I catch that deep rooted sadness that so many people must journey through. I tell Max in a torrent of tears as we sit facing one another on the bed that I am not finished with my journey... there are things that I have not done and children left to raise. There is only one way to go and that is forward.... tears dry up and with my vulnerability tucked back in, it is time for bed.
Sleeping was difficult... night sweats and an uncomfortable stomach.... and a song by Pink playing over and over in my head - 'this used to be a fun house, but now it's full of evil clowns'.... reflects a recent dream of a house covered in ivy and the inside was chaos - untidy and stuff just thrown around in piles. My emotional life is always incorporated into dreams of houses in various states - I dreamt of an empty house with dirty windows next to a pond with black still waters a few days after my first marriage dissolved. This dream means that my life is in chaos but well camouflaged. Thankfully the bad days are few and far between and I am able to keep my spirits up. I get asked often if 'they got it all' and I honestly cannot answer that because even the professionals do not know - every one is different and only time will tell. I am still in the middle of my journey. It has helped tremendously to be open and honest with my feelings and emotions especially with Max who would have no idea otherwise - some days, I make it look easy.
Wednesday 23rd December
Lydia has a sinus infection today... I can smell it so I get her to use the Neti Pot and voila I am right - only she also has blood in the mucous which has me concerned that this has been going on for quite some time. At the Doctor's office, it is determined that mommy is right and a script is drawn up for an antibiotic... a saving grace for Christmas.
On the way home, my Oncologist calls to inform me that in fact I do have an infection and he is concerned about that and the other symptoms that I am exhibiting and would like to see me in the morning after my blood tests. I am hoping that we have good news so that we can get on with the next treatment on Tuesday. I am on antibiotics and hope that the infection will have resolved itself.
It was nice getting an email from Bev - I missed all the girls at Art Therapy too!! I was not up to it on Tuesday but I will see everyone in the New Year.
Thank you to Sandra Moyer for the lovely gift and card... I really missed seeing you today but I needed to take Miss Lydia to the doctor. Sending all my very best to you, Joel and the kids. Love you!!
I am wishing every one the very best Christmas and a very Happy New Year!! No matter how you celebrate or what your religion is, you can be sure that I am sending you our very best for a spectacular New Year filled with Love and laughter. Make everyday count!! xoxo
Some Facts about my cancer:
STAGE - I am a stage IIA - My lesion is under 2 cm but has spread to the nodes. Because it has been found in the nodes it is considered invasive (on the move) which is why Chemotherapy followed by Radiation is highly recommended. Lesion is a term to describe a tumor. There are in total 5 stages in cancer with substages to describe more accurately the individual involvement.
DCIS - Ductal Carcinoma in situ - my cancer started in a milk duct and likely the one which had mastitis - in my estimation never really healed. My breast remained tender even after I finished nursing my last child and it never occurred to me to have this checked more closely. Other than the tenderness that occurs in pregnancy or prior to menstruation... your breasts should not be tender or painful - seek out medical advice and pay attention to any changes. Four out of Five breast cancers today are invasive. Early detection is critical to a good prognosis. Fear will only delay your treatment and cause anxiety. I have had a number of girlfriends that have sought medical attention after hearing my diagnosis - it never hurts to ask for an ultra-sound or mammogram if you are anxious - this sets a baseline for future tests. One of my girlfriends had a number of lumps in her one breast but felt that if I could be brave enough so could she and found to her relief that they were cysts. She is now in the system and will be checked annually.
Lumpectomy - the removal of the lesion and tissue surrounding it. The margins - refer to cancer free tissue surrounding the lesion - must exhibit no signs of cancerous cells. In my case the margins in the first surgery were not clear and as a result, I required another surgery to remove more tissue and an axillary dissection of the under-pit lymph nodes. It is common in breast conservation surgery to go in more than once as the Surgeon's goal is to remove all cancer but to conserve as much of the breast as possible. The size of the breast and the lesion will determine whether it can be done.... I was fortunate that I had enough tissue to conserve the breast. Mine involved removing the lump which was 4 cm x 4 cm x 4 cm with a margin of 2 cm in the first surgery and then an additional tissue removal on the second surgery.
Lymphedema - it is the swelling that occurs when lymphatic fluid cannot be drained into the lymph nodes that have been removed by surgery (I had 32 removed) and the excess fluid sits in the limb. I have a mild edema that is controlled through the use of an appliance - a sleeve I wear daily to prevent a build-up of fluid in my arm. This can easily get out of control with an injury or excessive pressure on the limb affected. I sought out my family doctor who knew what she was looking at and immediately referred me to a lymph masseuse and an edema sleeve fitter. I do not wear a gauntlet (hand compression glove) because the swelling stops short of my hand. Symptoms - tightness of the skin and a rippling look along the inner arm. Any injury requires immediate attention... even nicks to the skin need to have antibiotic cream and a bandage applied - I have a prescription for an oral antibiotic in my purse just in case.
Chemo Brain - this is very much like Baby Brain - the inability to remember things and the fog associated with everyday life - not being able to sometimes do simple tasks. It is a frustrating part of the Chemo process and just as you get most of your mental faculties back... your next chemo is due!! This can continue some time after the treatments are done.
Night Sweats - this is the slick clammy layer of moisture found on every inch of your body which started with chemo - women who are pre-menopausal can find themselves in instant menopause with the beginning of chemo and may return to 'normal' once this ends..... me, not so lucky... have all the menopausal symptoms but with the menstruation - albeit light, it is still there. Some nights I find I get the shakes like I have a fever and after tossing blankets on and off will often find myself getting up.
Hair loss - it is just a rumor that you actually lose all your hair... you actually lose it in stages starting around the 12-16th day after chemo begins with some patches remaining. I had to use a shaver on the sporadic patches on the top of my head that became rigid but did not fall out. It is recommended to use an electric shaver to avoid the possibilities of nicks and scrapes. I did keep my eyebrows although they did thin it was the one thing I had hoped to keep - it is the frame for your eyes and the way we express emotion!!
Symptoms to look for after treatments:
These symptoms can be indicative of a return to cancer which can occur at any time.... coughing, shortness of breath, morning headaches, bone pain, breast pain.
Sunday, December 13, 2009
..... just when you think you have conquered the symptoms..... some new and disturbing ones crop up. The old saying 'you don't get something for nothing' also applies to medication... case in point - I had been fighting the horrible burn of reflux through the first two rounds of chemo but managed to get through the worst of it in about 5 days..... this round, although the burn was gone, the swelling and belly pain began in and around day 3 and has now progressed to day 9 to be a massive amount of pain which is screaming through my back, around my side and clearly through the 32 feet of entrails filled with the acid reflux that is moving slowly and excruciatingly downwards. I have consumed more water than a camel about to embark on a cross-Sahara journey and the result - a bump forming in the front instead of my back!!! This apparently will resolve itself in time..... how much..... not really sure? I decide that a good stretch and a walk with the kids will expedite the process now that I am not suffering the ill effects of head fog. A few minutes in and Miss Lydia has found a puddle while wearing her runners.... no worries, we head home just in time to find William has arisen and we coral him into accompanying us to the local coffee shop.
Dinner on Friday came by way of Nick P. who admitted that as an Italian... it is quite a challenge to make anything without tomato sauce and my family appreciates the effort made to achieve a delectable meal despite the challenges. Thank you for the visit and the hugs!!
Monday 14th December
It is the Recing Crew meeting at 9:30 am for the committee to finalize plans and details for a gathering in January. It is great seeing all the girls and I realize with emotion that I miss them a lot, and my everyday life. We laugh and chat in between planning and as I look around, each and every one of them has been there for my family and myself in their own way. My work is not just a job... it's a family too!! Thank you to everyone for being a part of an amazing crew who have made life fun and interesting for those around them. xoxoxoxoxo I get to hang out for a few minutes with my colleagues in Engineering who make their way over for hugs... thanks Scotty for the warm reception and the twoonie that went to the raffle for the amazing gingerbread house that Vasja and his wife made to raise funds for the food bank.
Tuesday 15th December
I went to Art Therapy this morning and although the experimenting with lace doilies and paint was fun... did not quite get the effect I was hoping to achieve... and find myself sitting there like a writer experiencing a block. Our newest member is Dave whose wife has cancer. He spends the first hour being quiet and drawing on a sketchpad while all of us gals are chatting excitedly. I asked Dave a few questions and complimented him on his sketch and then he just opened up and became quite chatty. He left early to get to an appointment but you could clearly see that he enjoyed sharing his love of hockey and produced a picture of him tending goal from his wallet - the days before anyone wore a helmet. He spoke of a head injury which was stitched at half time only to return back to the game shortly after. Amazing how much things have changed over the years....
The package is waiting for me as I return in the early afternoon... Miss Lydia's doll that I ordered online from Maplelea dolls. I open the gorgeous box she comes in and gazed upon the prettiest doll I have seen in a really long time. She has long red hair and pretty blue eyes and reminds me of the lovely girl who will find her under the tree. I have ordered a snowsuit which has been shipped but they do not have the knit hat and mitts available so I head out to Michael's to pick up the wool to make them myself. I had to do some calculations from a pattern I currently have but when it is finished... it is a perfect fit!!! Max is thrilled and agrees that the doll and her outfits are fabulous!! I only wish I had a doll like her growing up.... and I did love my dolls and took them everywhere I went... as a young pre-teen, I would dig swimming pools for my Barbies in the back yard. I would build beds and make clothes for them... all that engineering sure came in handy years later.... I am still in the process of making miniature mitts.
Wednesday 16 December 2009
I am at home trying to tidy up and get ready for Christmas and not getting too far. I am meeting with Thomas for lunch in the early afternoon - after the lunchtime rush... we laugh and have so much fun as the conversation flows. He is a good friend and I adore him and wish we had gotten together more often over the years.... it is easy to get too busy. We head over to the dollar store next door because the 9 flower pots I picked up a few days ago are not enough for the lovely plant arrangements I received just after my surgeries months ago and now the plants are outgrowing the planters. Thomas is finding so many treasures and we traipse through the quiet store. I have 20 pots in my basket and a few other items. It has been an amazing time but it is now time to go home and Thomas grabs my bags and escorts me over to my car which he has unknowingly parked right next to - what are the odds. Big hug and we promise to meet up again in the new year when I am up to it.
Thursday 17th of December
Yoga was fun today and lots of hugs and well wishes to everyone as it is our last Yoga day until the New Year. I have to leave shortly after class to pick up my children from their dental appointment. More hugs and well wishes from the incredible staff of Dr. Spagnolo's office. These gals have gone out of their way to try and accommodate our crazy schedule this year and always treat us well. Thank you and we wish you all the very best this Season. xoxoxox
A few minutes after I finished my lunch, the doorbell rings and it is Canada Post delivering a package!! It is from Tracy and her daughter Emily.... the elusive package, which was hung up in Canadian Customs has finally arrived!! The postal worker is surprised that I am so jovial as I wish him a Merry Christmas and let him know that my friend will be so thrilled that the delivery made it!! He looks at me, smiles and let's me know how much he appreciates my kind words.... he hasn't had many today and must play the part of the messenger that bears the brunt of his recipients angst because of the customs hold-ups. I am just grateful to receive the package - Lydia will be sooooooo thrilled!!
When Lydia gets home, I sit her down and explain that this is a gift given from Tracy's daughter and as she reads the card she looks at me and is surprised that Emily knows what Lydia likes and is even more surprised that a girl a few years older than her would be so thoughtful as to think of someone she does not know let alone send her a beautiful Unicorn Webkinz whom she has aptly named Rainbow. She also finds a package of smencils - scented colored pencils which she is thrilled about. I am deeply touched as I watch Lydia hug the Unicorn to her chest and race off to show it to her brothers and introduce the latest member to the assembled stuffies on the livingroom floor which she has been teaching!! Thank you Emily and Tracy for your wonderful gifts and your friendship - it means the world to us! xoxoxo
Friday 18 December
I have not slept exceptionally well - my side is in pain and has been all night. I am up sporadically through the night trying to disperse the gas which I am sure it is..... so it is a liquid diet today. Looking forward to getting back to normal.....
Saturday, December 5, 2009
....... I am used to being in the chemo suite by myself surrounded by patients and a busy nursing staff but today I am being escorted by my husband. It is early in the morning and there are few people milling about but Max notes as we leave 1.5 hours later that the place is filling up... should be here in the late afternoon I tell him. He loves to joke with the nurses and is being spoiled by the volunteer passing out some of his very favorite dutch cookies!!
The nurse in training has done a great job inserting the needle for the syringes that will be inserted into the special click lock receptacle on the IV. She takes longer to push all four of the syringes than the seasoned nurses around her because she does not want to go too fast. She will be working at the hospital in Wingham where she is from and as we talk, she tells me that her husband used to be a tech at CKNX radio. It's a small world. We are done and another nurse comes by to remove the needle and has me apply pressure while she moves off to get my info punched into the computer. I pull up the gauze a few minutes later and note how odd it is that the skin pulled up and then completely collapse into the hand. A few minutes later while waiting at the pharmacy to pick up my medication, I note that my wrist is burning and it is beginning to swell. I return to the chemo suite where one of the nurses gives me a heated gel pack and instructs me to keep heat on for the next 24 hours until the vein stops its spasm. I get home and realize that the swelling has reached a proportion that is causing pins and needles in my hand and the wrist bone is no longer defined. I have a really bad feeling that the IV was inserted through the vein and then back into it....
Max took Mitchel and Lydia out for the afternoon to hang out and they had such a great time while I lay in bed watching HGTV online and doing crossword puzzles. Since I had to change the heat pad often on my wrist, I was unable to really take a nap - besides, all the steroids they give you make it so that you can't really nap well for the first few days. My heartburn/reflux was so severe during the second round of chemo that I asked for something to help me out this round.... amazing that they have a pill for everything!! I feel like a junky surrounded by my pill bottles.
Tonight Mandi drops off a totally yummy comfort food duo of Shepherds pie with salad and rhubarb/berry crumble courtesy of Janice Mills xox!! Thank you so much :D I heated up desert in the microwave.... hmmmm the best!! Thank you to my good friend Mandi who had a car load of stuff to drop off at Walmart - yes, we will get together soon when you are not always on the go!!
Lydia loves to watch the occasional movie in her room when we are playing something with a rating that she should not be watching. Usually we set up the laptop upstairs in her room but tonight we set in up in mine and the two of us cuddled in to watch the latest Micky Christmas stories. We just had so much fun - she kept saying how much she loves me... these are the moments that I hang onto and I smile back into her face and tell her how much I love her. Mitchel joins us later for story time and the two of them take turns reading the story about the Christmas bear and all his woodsy friends. Her reading has improved immeasurably and I have been fortunate to be home in the evenings to help her. She is really showing an incredible amount of maturation and independence and is quick to help out when she can. She can maneuver her way through a computer quite competently as do her brothers. Kids are crazy smart when you let them do things for themselves by themselves... of course some things with guidance helps....
Thank you to my sister-in-law Marleen for the Christmas parcel that arrived in the mail. She is always so great about sending things off in a timely fashion... I will be lucky if I can fill out my Christmas cards this year... and the annual family newsletter - pretty much summed up in my blog :).
Saturday 05 December 2009
Before bed last night I cut the toe stitching out of one of my wool/cotton blend socks to use around my wrist to keep it warm through the night - which works out quite well - it has enough compression to keep the swelling down and keeps it warm without me getting up every hour to reheat it. This morning it is feeling better and the bruising is subsiding. I am waiting for the nurse to arrive to give me my Neulasta shot but I note the time and we are now passing the 24 hour mark and I am getting nervous.... I have already left messages for my regular nurse on Friday but with no return phone call and no phone call this morning - I get on my Blackberry and instant message Mark - would you be able to give me an injection on your way to the Children's Christmas party if the nurse doesn't get back to me? No worries he says and promptly drops by with the kids at noon to give me the injection!! The kids are so great and end up hanging out with mine who are also heading out to the party when we are finished with the task at hand.... I had to smirk when he talked me through the entire procedure and I was deeply grateful for his experience - think he did better than the nurses for sure!! Thanks so much Mark!! I am not going to the party that I helped organize because I am too sick to go. My stomach is doing twists and I can feel the fatigue pulling at me. Max ends up sending me pics via his iPhone so that I feel a part of the activities. Love you sweetheart. I manage to get some down time in bed while sitting up. Thank you to Annarita for being a wonderful host to our guests when they arrived. xox. A Nurse calls in the early afternoon and apologizes for being late. We talk for a few minutes on the phone and she wants to come and look at my wrist..... no, I am good I assure her. She lets me know that I can call anytime that I need help and although she is not my regular nurse, she can come out if need be.
Dinner comes by way of Paul and Shelly and wow what a great dinner!! The chicken was perfection of which the leftovers were made into sandwich meat and chicken soup - yum!! Salads were yummy and so was the cake!! Thank you so much!! Max even ended up having some dinner before going out and thought it was amazing. We were spoiled.
Max headed out to his company Christmas party and felt a little out of place with me not being there.... I would have if I could have. Sending out love and hugs to Kathi and Glen for the invite!! Wishing everyone at Signature a wonderful Holiday Season. Max sent me a lovely picture of Kathi blowing me a kiss... right back at you beautiful lady - I really miss your smile and your sense of adventure!! I sent Max a pic of Lydia and I laying in bed watching the 'Polar Express' so he would know that we were there with him. He arrives home just as I am getting up to go to the bathroom. We sit and chat for a bit and he is emotional - he has missed me and I, him.... this is the part of chemo that really sucks... We cuddle in and talk until we fall asleep. There are many nights where we hold hands and fall asleep talking - we both take comfort in this physical connection.
It is St. Nicholas day and the children's boots are filled with chocolate and special treats from across the world... a place where my traditions and myself were born. It is important to pass on these traditions to my children - and we tell the stories that we were told all those years ago.... It is the beginning of the Christmas Season at my house.
Sunday 06 December 2009
The kids found their boots and as tradition would dictate... they all piled on our bed with their boots in tow pulling out the treats one by one with delight. It did not take Lydia long to part the chocolate from the foil and gobble it down while quickly unwrapping the next one - at least she stopped long enough to discern the pine-cone shape from the ball!! It is nice to see that the kids are enjoying themselves and we have some normalcy in the household. I am feeling so bad this morning but am grateful that the acid reflux is something that I do not have to deal with!! The stomach demands to be fed as it begins to roll in a sickening lurch and I am downstairs making toast and light decaffeinated tea. I drink about 12 glasses of water and tea per day to flush my system but when my stomach lurches, even water feels gross. My belly will stay puffy for another week until the intestines start to function properly - I find drinking the probiotic yogurt and a scoop of benefiber in my tea tends to do much better than any pharmaceutical stool softeners. Max is a little hung over this morning but decides that despite the pain in his shoulder that he will get up and get the outstanding chores done while he is still mobile - something tells me that he should have stayed in bed. Emily Brown drops by in the afternoon to deliver some dishes for my Cerebral Palsy donation in the morning. She looks great!! The sunny and snow free weekend is a great surprise for her long drive home. My friends in the States are not so lucky as reflected in their status reports..... some have had fender benders and in the Dakotas, they are gridlocked by snowbanks.
Tonight's dinner comes from Mary McCready and is a real delight for the children!! Yummy pork loin with cinnamon sweetened apples draped across them in a lovely sweet sauce, roasted potatoes and Brownies for dessert. Thank you so much for your lovely dinner and your company. xoxo
I want to wish Mandi Fields a very Happy Birthday today and sending you so much love and hugs and a huge thank you for being such an amazing friend!! We will get together soon to celebrate your special day. xoxo
Monday 07 December 2009
It is a restless night for both Max and I. Most nights just after chemo and usually for a week, I have night sweats and find myself in a constant battle between ripping off the sheets and my nightcap and then waking up to relocate my nightcap to keep my head from freezing. It is usually covered in a damp coating of sweat and then cools quickly when the cap pulls off as I move around. It is difficult to sleep after 4 am when my stomach takes its predictable roll and begs to be fed. I travel downstairs to find my stash of crackers and put on the tea kettle. I know that now I am out of bed, Max will finally fall asleep. He has become used to my nocturnal waking and seems to have found himself on the same schedule. I will return to bed when he gets up for his shower. He has been taking my hand throughout the night and kissing it...... it is an emotional journey for both of us and I can see that it is starting to take a toll on him. I will try to help do some laundry today and tidy up so it is less of a burden on him. I love you so much Max... hold on, we will get there!!
It has not been a particularly good day and with the lack of sleep tugging at every cell, the best I can do is to lie upright in bed and hope for the best... there is a sense of boredom that sets in with a lack of activity but not feeling well quells that notion quickly. I will try to get out to Art Therapy tomorrow thanks to the assistance of a friend who will drive me there and pick me up.
Dinner arrives in the afternoon with a big smile and a hug from Montea.... Steve Stax from Bob has made a yummy dinner of pork loin w/mushroom sauce, sauteed vegetables and roasted mini potatoes!! It was fab!! Thanks to Min for the delivery and the hugs!! You are looking absolutely incredible!! It is time for bed and I manage to get in an hour of dozing before the kids show up - they kiss and hug me and I gratefully pass out for a few hours before dinner.
I am not well enough to play with Miss Lydia and so she and Daddy play the Wii by themselves tonight while I sit upright quietly trying to keep the stomach from rolling... my head aches, I am tired and I want to lay down so up Miss Lydia and I go to read books. She is reading to me these days and pats my head in between page turning. She says she loves me about every third page. She doesn't like seeing me this way and expresses her feelings openly as she reaches out to give me a kiss and say good-night. 'Love you baby, always and forever', I tell her. She heads off on Daddy's back for the trip to her bed. The boys come in a few minutes later excitedly chatting about a You Tube video that they want me to see.... they move on when they realize that I am not well and blow kisses to me on their way out. We all do not like week 1 of chemo....
Max and I spent another restless night and I have left the bedroom to allow him to sleep, if only for a few hours. He has a lot on his mind and cannot sleep these past few weeks. He assures me that he is alright but I am deeply concerned.... he is usually the one to sleep no matter what is going on and I hope that it resolves itself by this weekend. His teaching for the semester is wrapping up by early next week.
I call Max's Dad this afternoon... always a great person to talk to. He empathizes and is quick to lend a shoulder. We half-heartedly joke and agree that the toxic sludge moving slowly through my body is wreaking havoc with all my systems. We talk about Christmas and we both know it will be contingent on how I am feeling. Last year I hosted the family Christmas - something I totally enjoy and was planning on doing this year.... OK, next year! Love you Mom and Dad and I miss you terribly.
Tuesday 8 December
I am able to go to Art Therapy today..... suffice to say that I am ill and clearly not myself. It has been another rough night and with the night sweats and stomach rolling.... my attitude needs the positive energy from my girls today!! They are great and are quick to support me by mentioning that I rarely walk in without a smile and that they are happy to see me. We get to draw the light we find within us and my first attempt reflects how heavy and weighted down I am by the swelling in my midriff from tons of water and food and little movement.... so the drawing looks like a Buddha!! My second attempt is far more feminine and in keeping with my belief that the soul shines through wherever it can. I have to leave right at 1 pm... I am meeting with my good friend Mandi for lunch - Happy Birthday again my dear friend and thank you for everything. xox
I get home feeling completely out of sorts with myself - cotton mouth and a head filled with sawdust. There are messages on the answering machine and one from Tracy at Lymphediva.... I have to play it twice and I realize with a shock that she and her daughter have sent my daughter a package weeks ago and needed to know if we had received it!! We have not received it and I feel terrible for Tracy and her daughter - what should have been a wonderful surprise is now spoiled by a postal system that cannot track their own shipment!!!! I email Tracy right away and am keeping my fingers crossed that it is just a matter of a congested mail delivery. I have not said anything to Lydia but I know she would be so touched by these really lovely ladies who have reached out their hearts to us. Sending love and hugs to you. It seems that is not the only package that may not make it in time - the doll I ordered Lydia weeks ago was not sent due to a backorder issue.... I have asked them to ship it anyway without the one item. Perhaps both will arrive together.
Dinner is a delightful beef and barley soup which the children devour hungrily!! Thanks to Steve Ward for another wonderful comfort food.
My sister-in-law Debbie calls and we chat like two school kids with a short recess break!! We always laugh and I can tell in her voice that she is concerned but uncomfortable about what to say to me... just be yourself - say what comes to mind. The conversation rolls and takes its natural flow back and forth. Her quick giggles and sense of fun lighten my spirits but I am tired today and I hand off the phone to Max to say hello. Thanks for calling Deb!! *squeeze* xox
Max took the children to see the new 3D Christmas Carol movie. They enjoyed themselves and upon their return, Miss Lydia snuck in to bed beside me and promptly fell asleep after telling me how much she loves me. I love you too sweet pea. We hold hands as we drift off together.
The wind is extremely strong and keeps me awake through the night, along with the night-sweats and the rolling stomach..... *sigh*
Wednesday 9 December
Today is a little better than yesterday... I have had a few more hours of sleep. It is just enough to get up and get something to eat... do not want to lay in bed so I find small paperwork tasks to do and emailing. Tomorrow I will try to get the laundry done that I wanted to do for the past 4 days.....
Dinner comes by way of Swiss Chalet courtesy of Julie Atchinson..... sorry hun that you are feeling under the weather and I hope you are feeling better sooner!! xox
Miss Lydia is picked up by her best friend Maggie's Dad to go to Brownies together. Thanks to Tracey and Jay for looking out for Lydia and for taking some of the strain off of Max's schedule - he was able to mark his student projects this evening while I went to bed.
Lydia is put to bed but wakes up a short time later saying she has had a nightmare.... I think she has overheard Max and I talking. I am having a tough moment and the tears are sitting on the brink of spilling over - I have had enough of feeling crappy this week and although I know that it is a matter of only a few more days..... they feel like they are dragging on forever. I can understand the depression, anxiety and sheer anger that comes with a journey such as this and I am able to remain calm and introspective. I do not want to even consider what it must be like for someone going through this journey alone...... I am blessed and very very lucky. I sit with Miss Lydia and let her know that her dream is about how scared she is that she will lose everyone around her whom she loves but I let her know that it is OK to be scared and that the dream tells us that we need to reassure her that we will make it through this the best way that we can. I can't say for sure how long any of us will be here but for the moments that we are, we should make them count!! Goodnight my sweet adorable little girl, Mommy loves you always and forever. xox
Thursday 10 December 2009
I have slept better tonight but am still up at 4 am. The tea is comforting as I listen to the wind howl around the house..... day 2 of this winter storm. We do not have the snow here in London but areas around us are starting to pile up.... my friends in the States are all hunkered in for this first real blast of the season. I have put an extra blanket on the dog bed and put two sheets of paper towel into the rat's cage. Today I am hoping to make it to my Yoga class... I desperately need to get out and be with the girls.
I make it out to Yoga this morning... usually I am away for the first week of chemo but I am desperate to be with the girls and find comfort in their hugs and smiles as they note that although I am looking good, I am not well. My stomach will not stop rolling despite the food I have jammed into what feels like an overstuffed holiday feast - I drink a probiotic yogurt drink before class but cannot quell the burn that has been going through the night. Standing up is OK but the queasy head spins begin when I bend over.... so I modified my Yoga today and am grateful for just being amongst my friends.... the support from people who know exactly what you are going through is - priceless. One of the girls has her hand wrapped in a special edema wrap - she had her wrist adjusted by a chiropractor - voila, instant edema for her... she had the same surgery as I had but with no edema for 5 years until the Chiropractor.... now she will wear a hand gauntlet, likely for life unless the issue resolves itself. Edema is a result of lymphatic fluid that cannot find its way into the lymphatic system and get flushed out. I have a minor edema which can flair instantly due to injury and so this is a lesson to be very careful.
The rest of the afternoon is spent quietly watching TV and staying upright. Dinner comes by way of Pam McKellar!! Homemade macaroni and cheese disappears quickly as the hungry children take in a newly discovered show Cake Boss..... gives Pam and I a chance to catch up. Thanks so much for everything.... and thanks for the loan of Michael J. Fox's latest book. Incredible how one person could touch so many lives with his positive upbeat outlook. It is true what he says about being around loving supporting people - it makes all the difference. Hugs and she is off into the blustery cold night. xox
Lydia and mommy take a bath... she wants to wash my hair and looks ticked when I ask her if we will be styling it after? Would it cost more if my hair were longer? She resigns herself to washing my feet with a scrubby and grins evilly when I respond to the tickling!! I am grossly bloated and she makes note of this.... even Max is surprised by the girth created by so much bloat - water, food..... no movement.... yikes!! It will resolve itself.... just a matter of time.
I awake abruptly in the middle of the night in excruciating pain.... the acids from the stomach are on the move and violently force their way through my intestines creating spasms in their wake.... it is also moving upwards and my mouth fills with the burn. I sit in the 'restroom' - what a strange label for anything other than being restful?! I wait it out and when things finally settle after 1/2 hour, I can make my way back to bed. The wind is still howling.... so reflective of what is going on inside my body!!
I wish to thank the supper club for another week of phenomenal suppers, kind words and hugs. To Tracy and her daughter for their wonderful and lovely gesture - we have not lost hope and we will keep the faith. To my Art Therapy and Yoga class ladies - you make this journey doable. Sending love and best wishes to everyone. xoxo Happy Birthday to Mandi who is such a good friend to me and my family... we will come to visit with you soon.