Sunday, January 24, 2010
.... round five week 2
...... foggy brain and in pain.... not exactly a great mantra but one in which I am living each day. I am up early and trying to shift the pain that has now found its way into my spine from where it started last night in my hips. The sweats are driving me near mad with a constant on again, off again.... sheets on, sheets off ...
Friday 22nd January
I have started my slow shuffling walk trying not to jar the already painful knee joints and hips - I am taking over the counter pain medication to stave off the worst of it but even that is only taking the edge off.... I am now taking them every 4 hours and having to hold off from taking them too early. It creeps up the shins through the knees and up into the hips - I can keep it at bay if I hold my legs just right and then stop moving. Finally comfortable and then I have to get up again to go to the washroom. The house is empty and everyone is off to school or work and I will get up to at least read the paper and drink a cup of tea. The effort pays off as I read the amazing news of a young couple who has just had quadruplets!! That is exciting!! I will sit quietly catching up on the news and spend the rest of the day laying down watching TV and finishing the wool hat I started... my hands do not hurt.
Mandi calls around 6 pm.... she has had an incredibly busy week and is almost crying when she apologizes for being late and that she will call in our dinner.... no worries girl - Max will head out to pick up pizza for the kids. She does so much for us and then tries to juggle everything else in her busy world. Hugs girl, we love you!!
As if by scheduled routine.... Eryn, full of tears and escorted by William has come to stay the night again..... her Mom just can't seem to get it together and once again tells her that she wished she was never born.... who does these things? This has become a routine with every chemo round it seems and so with a little shuffling - Eryn sleeps in Lydia's room.
Saturday 23rd January
This is the day I have not been looking forward to all week.... the pain is now deeply entrenched in my bones and has moved up into the spine - it cracks when I shift in bed and the knees send electric shivers up to my hips. Today is my slow day.... a shuffle of sorts just to get anywhere and not in a hurry either. My brain is functioning but conversation is difficult and I cannot remember things. I can see that the day is sunny and bright and am grateful that it is winter.... I am already feeling very isolated from my world and apart from what is going on around me. I shuffle to the couch and sink in to it while the kids get themselves organized.
Mandi has come to call and has brought flowers..... she has been so amazing through this journey and I am grateful for her incredible support. Her children wait in the hallway and I can see by the look on their faces that I look pretty scary today. It is hard for a child to fathom an illness that takes so many months to go through - they have asked her how come I am still sick?Hugs and kisses later, she is off to do what Mom's do on Saturday with their kids.... I can't wait to get back into my routine again..... soon.
My hair is growing back and I hope it continues... this chemo is also supposed to cause hair loss but not always..... although that being said, I have fewer eyebrows today than I did a few days ago. I have eyelashes too which I am grateful for - not a lot but they are still there none the less.
My attitudes usually start to take a nosedive right around the 4th day of chemo... about the time that the immune system begins its decline - the thoughts are usually negative and focused on things that bother me... like the friend whom I parted ways with when my journey began... a neighbor, who just had her fourth baby is having to deal with this woman dropping her child off and not picking her up until sometime after 9:30 at night because she and her husband decided to go out on a date night.... they pulled the same stunt on us numerous times without calling or even asking and a few times we had to put her daughter to bed because it was too late. I am just grateful that I no longer have to put up with this .... I just feel bad for this woman, who like myself, did not want to rock the boat but when you are going through stuff... you sometimes can't take on anyone else's. Every experience is an opportunity to learn and to improve oneself. Tomorrow will be a better day!!
I am still on my journey and will be for a while yet to come..... I can still answer a phone and look forward to seeing my friends when they have time in their busy schedule to see me... just know that I miss you too!!
Dinner tonight is provided by Max.... we waited until 6 pm and then Max put on chicken burritos for dinner. I burnt my lip trying to eat it because I was so hungry - this should have been a forewarning of things to come but I persisted and within an hour.... well, the pain came and the tears started. Max felt bad and really it was Ok I told him - I should have known better but I made a choice to eat it and now have to deal with the fallout.... he admits to me that he was feeling a bit of the burn and could only imagine what I was going through.
He tries to put me to bed after my stomach settled down and we talk but the pain has kicked it up a notch and I turn away from him and the tears course down my cheeks. He touches my hip gently and moves off to leave me alone. He has been really good these past few days and tries to comfort me when he can by gently rubbing my back or my feet. My feet have been bothering me this time and warming them in the bath is temporary, so he has warmed towels in the dryer and wrapped them. If I lay on my back with my body pillow supporting my knees in a still position I do not hurt as much.... it is when I begin to shift that things start to pain me. I have been laying down most of the day and catching cat naps when I can.... emotionally I am feeling better but mentally still foggy... nighty night.
Sunday 24th January
Today is a quiet day and a raining one.... a damper on the spirits. It takes forever to get up, take a shower and get dressed. I want to go out for a walk today despite the leg pain but I do not get very far in the driving rain and need to turn around and go back home.... tomorrow I will try again. Michelle is online and leaving notes on my Facebook. She has had the Docetaxel on Friday and I am giving her advice in order to avoid some of the issues that she will face in the coming days. So far so good with her but the 50 hour mark is closing in fast and she has taken her pain meds much to my relief and to hers. She is grateful for the experiences I am sharing but is scared... she is doing this alone and I am not.
My eyes are now sensitive to light.... this is the 5 1/2 day mark and my ears hear like a hawk... noises are giving me headaches. Max has to clean the bathrooms but can not use any chemicals to do that with - baking soda and bleach cream cleansers are the only ones he can find that do not give me an instant headache. It is amazing how many cleansers have odors just to make them enticing for the consumer to use.... they give me instant headaches.... wonder how many childhood allergies stem from Febreeze and other such products that are completely unnecessary if you keep a clean home. My mother always aired out our linens and our rooms almost daily.... this I do this morning to cleanse the upstairs while staring out at a gloomy rainy sky. The breeze feels good.
I am having difficulty looking at the monitor... it is too bright.... I am off to bed.
Steve Ward brings another culinary soup and the kids are in total awe of this giant of a man who has an incredible skill with a pot!!!
Monday 25 January
I go into work for a quick meeting to discuss the party a few weeks ago. Mandi has picked me up because my head is too foggy for driving and will later drop me off. I forgot to do a few things while at work but that is the way the head is these days... more off than on.
I spend the afternoon dozing off and on and tolerating the now relentless hot flushes that have me soaking wet one minute and cold the next.... it really started full force in the first dose of Docetaxel and now is taking it up a notch...
Steve Stax has made another fine meal - herb chicken with a lovely pasta with white sauce - yum!! Thank you!!
Lydia has been given back her eye glasses.... just a little adjustment is required but we are grateful that they have been returned to us!!
Tuesday 26 January
I am feeling under the weather after a restless night with joint and rib pain and of course the endless sweats. Max has slept in Lydia's bed, Lydia slept beside me and I will be lucky if I got any sleep at all!!
Art Therapy was packed but a really great group today. Bev, Kim, Ruth and Majella were there along with a host of new people... one young man has lymphatic cancer and has brought his Mom with him.... we will all cry later when she breaks down in front of us, trying to choke back tears when she tells us how worried she is for him and his young family. We all have tears in our eyes as we let her know that it is OK... we are all in our journey and we understand what he is going through. My art project is about me sitting in my garden surrounded by flowers and blue sky with my colorful bucket of water filled with flowers.... we are supposed to create something of ourselves and what we would carry on our lonely journey. Art Therapy brings solace to my inner self and keeps my spirits up - I look forward to seeing the women that I have come to know and appreciate.... this summer, I hope to see some of them out for a swim at our pool!!
Wednesday 27th January
It has been a restless night with sore joints, bad belly pains and of course the heat flushes.... by 4 am I have had enough and the tears start to flow and before I start to sob... I have pulled on a sweatshirt and hat and moved downstairs. I just want to sleep. Last night after dinner, I was in a mood - too noisy for me at the dinner table and just feeling out of sorts. Max kept trying to curb me and finally I had had enough and sniped back..... it is critical for a partner to keep in touch with what is going on and to ask questions..... so here it is.... I am going through chemo and menopause at the same time - I am in pain, exhausted and trying to cope with fluctuations in hormones. Maybe one day I will write a brochure, embellish it with lovely sunflowers and a couple enjoying a picnic under a grand oak tree with an even grander beehive attached to a lower branch and title it 'If you swat at a beehive, you are going to get stung'. I envision the next page with the now unrecognizable man's face completely covered in hives and welts but smiling because he nailed at least a handful with the branch still clutched in his swollen fingers.... wouldn't need a lot of written words after that visual :)
This journey can be terribly lonely at times .... I get to watch everyone walk out the door 5 days a week and live their lives while I try to keep mine together. The isolation is sometimes made worse by being left alone... I have hit the 6 month mark and while others have moved on and continued in their busy lives, I am still here. The blog has helped to let everyone know where I am at and how I am feeling but it neglects to mention that I still need my friends and would like to hear from them. We don't have to talk about my journey.... we can just have coffee.
Thursday 28th January
It is a cold bitter January day with high winds and beautiful sunshine... yoga day is always a day where the sun makes a show no matter what comes prior to or after. I am feeling bad but I know that I really need to get out.. sense a bit of depression setting in. Yoga was amazing as always with hugs and hellos from everyone including Mary whose daughter is not feeling up to coming out today - the radiation burns are making her very uncomfortable :( It is our last class of the 8 week cycle and I am able to do most of the exercises and am thankful that it is a restorative class. I meet afterwards with some of the ladies for coffee.
I am so inspired these days by my Art Therapy class that I have enough energy to pick out a few supplies from Michaels - oil pastels, watercolor crayons, paper, acrylic paints, brushes and some easy to decorate frames for Mitchel and Lydia.... later when they come home they are ecstatic at the new items and quickly get into a craft hour!! I also did some grocery shopping at the Loblaw. Signs everywhere tell of the plight of the Mexican and Florida growing season - our cold snap has found a hold in the deep south affecting produce..... just cringing to think of how expensive things will get over the next few months. I am starting to wear thin and my hips, legs and knees are feeling the strain of being upright so I head to the cash register and see a cashier whom I have not seen since last July - she is soooooo sweet and usually works in the plant center in the spring and summer and over the years we have chatted about our lives in a very candid and open way. Nadine recognizes me right away and after hugs she says"OK, so are you going to tell me why you don't have any hair?" and I turned and smiled and let her know what was going on.... the woman she had just finished serving gives me that 'Oh, dear' look and smiles crookedly as she redirects her attention to her grocery bags and moves off. "Don't make me cry", says Nadine as she reaches out for another hug. We chat and laugh as she packs the shopping bags and hugs again as she wishes me well and encourages me to come back and see her again when I am up to it. I smile as I walk/shuffle away.... been on my feet too long. I pack the car with care and jump in - is it really 1:40???!! I give Sandra Moyer a quick cell call to let her know that I am on my way home.... no worries, she is just leaving work and heading my way for lunch. Whew!! I get home minutes before she shows up. I have bought a hot lunch for us and spend quality time at the dining room table chatting and laughing - I really love the time she spends with me. Have a safe and super fun vacation and look forward to seeing you when you get home!! xoxox
I want to thank everyone for their calls and well wishes. I know that life is busy for everyone and the moments spent just saying Hi mean so much to me!! Thank you Bev P. for being so sweet and I always look forward to seeing you every week - hoping to get out to have lunch with you when my chemo is over. Raye, thank you for your cards that always come in the mail at the right time - you are an earth angel. Mandi - for always being there and for being a good friend. I am learning so much from the precious souls around me that teach me everyday how to be the very best that I can. xoxox