Friday, December 25, 2009
..... getting ready for round 4
.... 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