Thursday, February 18, 2010
.... a week that has begun with fatigue and a chronic lack of sleep....
Thursday 18th February
Today I am seriously tired and pull myself out of bed to take a shower. I can hear the radio as I towel off and realize that the news of a halt to the nurses layoff might mitigate some phone calls with requests for more interviews, and within minutes, the phone rings and the first request is for one live to happen just after 9 with Derek. I know Derek and try to answer his pointed questions with a foggy brain... I get off the phone and pray I didn't come across as some babbling idiot!! The phone rings within minutes of hanging up and Shauna wants to do a follow-up from the show we did the other day..... I really want to - more like need to go to Wellspring to get in a session of Yoga in but her show starts at the same time. No worries, I agree to do the interview on my cell from Wellspring.... there is a quiet nook at the back of the facility and I fight off the urge to lay down on the soft couch. Yoga is so good for the soul and my spirits are lifted by the hugs Valerie offers as I join the group in session. I stay for tea afterwards and the girls are so fun to talk to. They have copied down the link to the petition and promise to sign it..... the numbers are now 2472 and climbing by the minute!!!! This is just day 4.
I arrive home after grabbing a quick bite from McDonald's (I know - bad, bad .... super bad) to find a message on the answering machine. Derek wants to do a follow up interview with the announcement that the layoffs have been suspended with hopes that alternatives can be found. Do I think I was manipulated? I think the announcements were made so close to the Olympic fever and the Family Day holiday weekend that I think that would have been a terrible risk. The fact that it was started by a cancer patient.... who knows.... sometimes it doesn't really matter how things got started, the fact that they are and that people are becoming aware and are contributing are important.
The outcome is essentially what I am looking for - to make common sense cuts to a system that needs to be audited by an accredited and uninvolved third party. The people who have mismanaged funds need to be held accountable and positions need to be eliminated that generate no value to the patients health/healthcare.
The afternoon nap is elusive again today. It is a small price to pay. This afternoon, I will be taking my children to Art Therapy....... all three could use some time with Wanda and I could use a nap..... falling asleep in a wingback is not the most comfortable but the rest helped.
Monday 22 February 2010
Happy Birthday Ameeta!! Sending love and hugs your way. I am feeling like I got hit by a truck. The past few days have come with the worst head spins I have ever had unless you count the times in the far past that I have suffered from Vertigo. I would say that having head spins while attempting to roll over and get comfortable is just downright panicky. Max went to the drug store last night and picked up a standing prescription for a very powerful antibiotic. I am sure that the bowel infection is back.... the blood would be a good indicator that things are not well. I have tried eating as much high protein foods as possible to build up the red blood cells which are also low.... the belly bloat is still there but not nearly as uncomfortable. I am now drinking 4 Litres of water a day and an 8oz glass of prune juice each day. Today is day 13 in the cycle ..... grateful this is the last one.
I have been interviewed by a UWO student and sent him off some pictures to be included in his article.... I was incredibly tired this morning and found myself being overly chatty.... I tried to lay down in the afternoon but no success.... not sure how much sleep I got last night but it wasn't much in between head spins and sweats. I enjoy watching the olympic curling so much... I used to curl when I lived up north and did well in competitions... I will have to look into pursuing that next year when I have cleared my schedule. Tonight is ice skating pairs... magic.
Max is busy marking projects tonight and I am doing research. I am a guest on a debate panel with regards to the hospital petition that I started and those that are the decision makers....
Tuesday 23 February
Still not feeling well... sweating like mad and still getting the horrible head spins when laying down and just turning my head.... yikes.
I did go to Art today and enjoyed chatting with the girls. One of them works for a local paper which had printed my letter to the editor to get the word out and the link for the petition. The petition numbers are now over 5,000 and growing and the one facebook group is at the 5,500 mark.
Andrea called in the morning to see if we could do lunch but I was unable to as I had a meeting after the Art class.... so she made an extra special trip on her way back from getting her working Visa for the states to see me later in the afternoon. You look great girl and I am so proud of you for following your dream and being true to yourself. I love you and I will miss you sooooooo much!! xoxo
Thursday 24th February
I need to go downtown to attend a board meeting and drive around downtown looking for a parking space and realize that I have no money to feed the meters so I drive down to the William's coffee shop looking for an open meter with time still left but there are only two spaces and I pull into the closest one thinking that I will just have to incur a ticket but lo and behold, the meter I am parked in front of says 'fail'..... if that isn't a sign or what. I head off in the direction of the LHIN offices but instead find myself going into the wrong building and having to walk around two ladies smoking in front of the entrance doors.... I can't breathe and my legs pain me so much. I point out the sign on the door that clearly states 'do not smoke within 30 feet of this entrance'. I manage to cross the street in pain and clearly winded when I hear a F$%#k off from one of the ladies after she manages to cough out a lung..... I also get the finger to go along with the insult. I had a polite retort but she is very brave now as she paces back and forth.... I don't have time for this idiocy and spin around to find the building I am looking for with just minutes to spare...
Today I will find myself at the LHIN offices in my bid to be heard by the board of Directors... so unfortunate that I was unable to - there are procedures for getting heard.... I need to be a delegate and ask to be put on the agenda. I will apply and make plans to return again soon. One thing that really struck me and ticked me off was the one Director (Barrie) came in 10 minutes late and sauntered over to the table.... this after two issues had already been tabled and voted on. Mr. Barrett came over to me to discuss becoming a delegate and gave me his business card. No worries, I will be back. Rogers TV was there in anticipation that I would be heard and so a short interview in the lobby and I make my way home.... I am exhausted after only walking a few blocks.
Friday 25th February
I am off to meet a new gal Kaz who did the photo shoot with me last summer... only our paths crossed quickly. I am going for lunch with her and as we sit and I listen to her cancer journey I realize I am talking to someone who is just as outgoing, candid and fun-loving. We talk for hours and I have promised to come pick her up on Tuesday to go to Art and introduce her to Wellspring.
I am too tired to do anything else and lay back for the remainder of the afternoon. I am not sleeping and that combined with the leg swelling and dizzy spells ...... I am praying this ends soon - I have had enough of feeling crappy.
Saturday 26th February
I am up again all night and have no more tears to give regardless of how frustrated I am with the lack of sleep, muscle ache and overall malaise. I will lay down on the couch to try and get some rest.... and then spend the rest of the day lounging in an achey kind of way.
Sarah comes over in the evening with a box of chocolates which are lovely but will add another layer of chunk to a body that has been steadily gaining weight because of meds and chemo.... looking forward to the gym when this process is over so that I can begin the process of strengthening my body and my mind. I have been fighting off a mild depression for months now off and on and pray that the spring comes soon. Thanks so much for the visit! Love you so much.
Sunday, February 14, 2010
Friday, February 12, 2010
..... although the steroids work great to offset any swelling or allergic reaction to the chemicals now swirling through my system again... they will not grant me any sleep. The jaw numbness started up Wednesday afternoon and yesterday progressed into the orbital bones.....
The olympic fever is kicking in to full gear and I am grateful that we were able to finish installing the surround speakers last weekend just in time for me to be laid out on the couch. Sue is hosting the opening ceremonies at her house tonight but I will not be able to attend.... sigh. Mitchel's 13th birthday is coming up on Valentine's Day during the worst of my chemo cycle and I will have to forgo the activities this year. I have promised to make up for it next year with him but for now, Max and the kids and his friend will go bowling and out to supper. I feel like I have missed so much these past months.
Thursday 11 February
It is my brother's birthday today but I am not able to reach him by phone and by the time the evening comes.... I have forgotten to try again...... like so many things these days...
I always check my work emails on my Blackberry throughout the day - my thread of a connection to my outside world besides my addiction to Facebook. Today the tears begin to flow as I read the posting to cover my leave. It has been almost 7 months since I started my sick leave and now that I am on LTD, it only makes sense to cover off the shifts that my coworkers have been struggling to fill for all these months.... I feel bad for all of them and have since I left. I also miss them like crazy... hard not to when you are around them for almost 17 years.
Speaking of facebook.... the group I started with Megan for the cancer nurses support is growing steadily in numbers as the hours roll by. I have emailed every politician I can think of and have added comments to online news articles. I do not have the energy to push farther right now but you can bet that I will not let this drop. We are the ones as taxpayers paying the bills and what is happening at our prestigious hospitals amounts to a bank heist with the patients at the business end of the bullet. At some point in our life's journey, we will all know someone with cancer... and maybe it will be closer to home than some - make your voices heard. OK, enough soap box....
I have lost 1 of 2 loose toenails as a result of footgear that wasn't quite cold enough to hold back the chemo drugs. That is the least of my worries these days as I struggle with my body overheating and feeling frozen with just a split second notification... this would be what the drugs have done to my hormones. I am able to manage my pain well today but still cannot lay comfortably hence the reason why I am blogging in the wee hours of the morning. Max has taken today off and is currently trying to get some sleep ... he is a light sleeper and a patient man - I have spent hours looking for a comfortable spot and have yet to find it.
Friday 12 February
Today I am feeling the effects of the chemo in the form of head and knee pain... the jaw is still numb. The pain in my head sharpens with the cool air if there is no hat on my head... and then the sweats start up.
I am being interviewed today by Derek R. and Admar F. I will be advocating for the cancer patients who need the cancer and breast screening nurses who are being considered for layoffs by April 1st. I am also interviewed by Ryan at Rogers.... without my eyebrows or any make-up... the true face of cancer.
The Olympics have started and as I am laid out on the couch in agony, Miss lydia has decided to stay behind to watch over her Mom while Max and the boys head over to the neighbor's house for an opening ceremonies party.... getting used to missing every event or participating for short times over the big ones!! She is dancing around and we are making Canada flags to wave at the opening ceremonies.... I just want to crawl under a rock....
Saturday 13th February
Today Mitchel will celebrate his 13th birthday with the family and one friend..... minus Mom. I feel like I have just missed out on so much these past 7 months as I crawl back into bed and the tears flow.... the pain I can tolerate, missing my son's birthday - not. They are off to the movies in the morning and then will go to the Palasad for bowling and dinner.
I have a voracious appetite... funny how it is for meat or foods high in protein. I read somewhere that when your red blood levels drop - the additional proteins help to rebuild them faster. I am learning to listen closely to my body and giving it what it needs.
Sunday 14th February Valentine's Day
Happy Birthday Mitchel!!!! Mommy loves you sooooooooo much. I am starting to get emails asking for interviews from the LFP. As much pain as I am in, the two facebook groups of which I am now an administrator has begun to pick up numbers by the minute and with an article being written for print on Tuesday, I carefully pick my words and produce a petition and post it at 9 p.m. I send the link to John Minor of the LFP in hopes that it is included in the article.
Monday 15th February Family Day
Another day in pain.... go figure!! I am experiencing the exact same experiences as the other two chemos. I had forgotten a dose of pain pills yesterday and reminded myself to never do that again!!! Max takes the kids tobogganing today while I lay on the couch watching the Olympics on our 50 in Plasma and surround sound.... it is little solace for missing the day with the family but it comes in a really close second!!! The day is spent in a terrible fog. Max is now sleeping in the spare bed in Mitchel's room because I cannot lay still.
Tuesday 16th February
I am up early because the dog is barking... I get up and grab the paper out of the mailbox and place it on the counter and head upstairs. I have not slept at all and just want to be back in bed. Max wakes me up a few hours later running into our room - I have made the front page of the LFP just above our 1st Gold metal winner Alex Bilodeau. Well how about that!! Then the emails really start pouring in and i give radio interviews one after another - I even get to do the Shauna Rae show at the top of the hour. CBC morning does a phone interview which will be aired tomorrow. I am exhausted and as I look up at the clock, it is now 10:50 am and I shut things down and go to Art today.
Today at Art was so emotional for us and one of our new members who is terminal at such a young age has touched me so deeply that the tears run down my face as I look in his eyes. We talk about the lure of spring and the excitement of its impending arrival... he quietly announces that it will be his last one.... I ask if I can hug him and we wrap our arms around each other. The hugging starts and it is infectious. What a life-inspiring and energetic group. We all know that life can be short as we discuss the young life and shocking end to the Luge racer who died before the opening ceremonies at the age of 21. We do not have any guarantees in life and so we all agree that we should enjoy what we have every day.
I meet up with Susan for lunch and she is wonderful as always and we chat about the morning's events... she can see the exhaustion on my face and I head home soon after we are done lunch to go and lay down. I do not get a chance... it is more phone calls and another interview which will be aired tomorrow. It will also be another night with no sleep. Miss Lydia has crawled in beside me with a stomache ache in the late evening. I have been watching the men's single skate and am surprised that once again we are watching falls and minor errors. Maelle Ricker has won the second Gold in women's snowboard!! What an exciting event as she tore down the hill!!! I am excited for all the competitors as they struggle to achieve their own dreams and I cry like crazy when they fall... so much work boiled down to just one event.... sad.
Wednesday 17th February
I have to crawl out of bed to take Lydia to her eye appointment..... I have not slept again and the headache is massive. I get her to her appointment and are fortunately seen early. He is firm in his belief that the prescription we filled was not necessary - he must see a lot of children who try to 'play' him. Fortunately, I know my children well and I sit there patiently while he issues a running commentary justifying his point of view. I have learned in life that sometimes my opinion really doesn't matter... I just know what I know. He finishes testing her eyes and she pops her glasses on. Just for laughs, he shows her parts of the chart again that she had erred on prior to wearing them - eh voila - she gets each one right and right away. Mom's know best.
I drop into work and drop off the dishes for the supper club and chat with Mandi... say hi to a few more. I pick up and pay for the coffee at Bob on my way out - a fundraiser for Haiti.... I am so tired and head home. There are a few messages on the phone and I return the calls and head over to the couch for some relaxation. My legs, lower back and ribs still hurt... my feet feel disconnected.... tomorrow will be better than today.
Sunday, February 7, 2010
..... the other day when I was en route to the college, I decided to circumvent the city by taking the 401. Despite the fact that most days I am inclined to drive my car like it is stolen, today was no exception and noted that I was going 117 km as I came off the on ramp.... the guy behind me thought I was not going fast enough and so rode my bumper. His impatience was obvious as he pulled away then drove up fast enough to intimidate - clearly dangerous behavior as I was passing a semi on my right and signaled politely as I pulled in once I safely cleared it. He zoomed past like he was late for something and I pulled in behind as I came up to the next semi..... he was looking back when I pulled off my hat. I got a double take and had to smirk.... far better than showing any 'sign' of displeasure.... not that I would have given him the finger anyway but took great satisfaction in getting his attention! :)
Ever since I can remember, I never liked being stared at - it always made me feel uncomfortable and singled out.... I would have been easily mistaken for a wall flower in my earlier days... felt like an ugly duckling really with my clumsy feet, my buck teeth and hair that always seemed to be stringy and hung over my eyes regardless of what I did with it. That was during my formative years and although I had my teeth somewhat straightened and my skin maintained a healthy glow through the teen years (sans pimples), the feeling of being on the outskirts never really left me. Today I am outgoing, confident and bald!!! I still do not like being stared at but do not mind as much. I am easy to approach and will start a smile as fast as I will return one given these days and I do not mind if someone asks about my lack of hair. I appreciate the candid conversations that I have with friends and strangers. I am an open book these days. I also do not leave the house without drawing on some eyebrows and putting on make-up... what would have taken me years to finish in the make-up drawer is now being used up. I can put on my face from start to finish in about 7 minutes!!
Sunday 7th February
For the past few days I have noted some swelling in my eyelids and of course the exodus of most of the eyelashes that adorned them just weeks ago. My face feels swollen and uncomfortable and I realize when I come to full wakefulness at 4 am that my chest, spine and legs are also out of sorts. My legs and rear are swollen and I cannot see or feel my ankle bones. My gut feeling tells me that I am suffering from dehydration and I get up to go and drink as much water as I can manage. The skin is tight and I pray it is not edema. Walking is difficult at best and sitting just makes it worse. I have spent the previous days painting the boxes Max made for the build-ins on either side of the fireplace and some small plaster work and touch ups on the wall after outlets were changed or items removed from walls. Just these simple tasks have exhausted me and I became too pre-occupied and busy to remember to re-hydrate. I was not listening to the cues my body was giving me ..... the recipe for trouble!! The swelling has reduced by half just before bedtime.
Monday 8th February
I have to take the double dose of steroids this morning in prep for my last round of chemo and I am hoping that it will aid in getting rid of the fluid still causing swelling in my limbs and face. I will find relief later on in the afternoon when I have drunk about 3 litres of water... which is difficult to get down at the best of times - by the time I take Mitchel to the theatre in the early evening, there is a minor swelling remaining - not edema, thank god but just dehydration.... the pamphlet I pick up from my bedside table indicates that leg swelling is a 'need to drop by and be seen' event.
I meet up with Eileen and daughter Beth at the theatre just a few blocks from my house and it is all hugs and kisses. We have been friends for 20 years - Beth would have been a little younger than my daughter is now when Eileen and I first met. I am out of breath just walking to the theater and my strained voice gives me away.... I struggle to catch it as I slip into the seat next to her. She has her oxygen tank with her and I note that I have some idea now of what she might experience at her lightest days. Mitchel enjoys the movie thoroughly and is totally engrossed in AVATAR. What a spectacular film (this is my second time seeing it) - the politics of the film is obvious and it brings with it a two-sided look at a conflict. It is eye-candy through and through and the experience is awe inspiring. This is truly the best film ever made in this genre and a proud project of a famous Canadian director/writer... James Cameron. OK, I really liked the film and have only ever gone twice to the movie theater to see a film... the other one was Pirates of the Caribbean.
Tuesday 9 February
Today is chemo day... it is my last one and I couldn't be more anxious or excited to finally get this part of my journey over and done with. It is taking almost the entire 3 weeks to feel any kind of normal and now I am about to do it over again and thankfully just one more time. I will get to ring the bell and I know Eileen who will accompany me will tear up - that makes two of us. I grabbed the paper out of the mail box at 6 am and something told me to look inside - I found an envelope marked with a message 'Marita, open only after your last chemo' I think I recognize the handwriting and I am looking forward to opening it up... I will take it with me to my chemo appointment.
It is 1:30 when Eileen and I arrive.. I head downstairs to buy us a cafe mocha while she finds herself a seat in front of the chemo suite. I arrive back on the 2nd floor and find myself face-to-face with an elderly neighbor from my last neighborhood and his partner Sharon. I say hello to Rudy and realize that he is introducing himself - I have known him for 15 years and now realize that his mind has been steadily declining since his lung surgery 3 years ago.... now as I look at Sharon she stands up and we hug - the knowing looks are exchange and I turn to Rudy - I would have hugged him but being a stranger now would likely upset him if I did. He now has liver cancer at both ends and the duct in the lower quadrant is now compromised - it is his first trip in to see the Oncologist and is hoping to get treatments started soon.... later I will receive a call from another close neighbor who lets me know that he is beyond treatment and has only 6 months to live. He has feared his own demise since his first major surgery to clear blockages in the arteries leaving his heart.... it worsened with the lung surgery and he became withdrawn and fearful. I remember having to track him down after his heart surgery when he disappeared out of his hospital room - I had notified the nurses who were doubtful that he had left the premises. I worked as a security supervisor at the age of 17 and had tracked down many runners from the Civic Hospital in Ottawa with great success and 30 minutes later, I found my quarry on the front lawn of a residence just south of Oxford street. I managed to convince the very beligerent and angry Rudy back into my van and informed him we were returning to the hospital - we compromised after he began beating the back of my seat with his feet. I returned him home for a cup of tea and to visit with his dog before getting his son to contact the nurses at the nursing station. Looking into his blank eyes and lack of recognition after all the years I have helped this aging man had deeply affected me and I help him as he staggers over his cane and promise Sharon that I will call.
I run into Megan and hugs, kisses and a quick chat before she gets called to her appointment - tomorrow will be her first dose of Docetaxel. I wish her well when she comes out just before I get paged to the chemo suite. The suite is busy but not overly so today. I am hooked up to the benedryl which quickly runs through my veins making me sleepy within minutes. The 67 year old woman next to me looks so much like my mother did at her age and we instantly spark up a conversation. She is also on the same regime as I am and just minutes before me - it is her last day and is looking forward to ringing the last call bell on the intake desk. She is not finished her journey yet either and will have her breast surgery after her chemo is done and before her radiation begins.... she comes all the way from Goderich to London. I wish her and her husband safe journey. The clinician who called earlier in the morning shows up to inform me that the trial I have agreed to do for Radiation therapy has me in the group that will be doing the 1 week, twice a day radiation as opposed to the standard 25 treatments given over a 5 week period of time. It is the same healing time as the standard but the convenience of 1 week is a great relief. Individuals in trials will be closely monitored and the outcome serves to help others about to embark on their own journey.
I leave the chemo suit as one of the last patients for the afternoon and find that the waiting room is completely empty at 4:35 p.m. The bell is on the ledge at the chemo kiosk and as the remaining nurses and a male PSA worker come to the door as witnesses, I hammer the gong like bell and receive warm hugs and best wishes from each of them. How fitting that I start my chemo journey quietly and leave with a clang witnessed by some of the most important people in this journey.
Later in the evening I get a message from Megan - there are proposed cuts to the Oncology nursing staff at LRCC and a full cut to nurses at the breast screening clinic - WHAT!!!????? Who in their right mind would ever think that this is OK? These nurses are incredible and are our first line defense. They are a valuable source of information, support and usually the only ones we see as patients after the initial Oncologist consultation. They produce valuable information booklets for the patients to take home and they keep the wait times down by a considerable amount. This unit gives educational classes using nurses.... and the list goes on. Perhaps the administrators have too much time on their hands and need to take a well earned pay cut.
Thank you to Sue S. for dropping off a lovely hand made card which I opened right after my last chemo - it was like a warm hug after a really long day... thank you girl!! xoxo Thank you to Eileen for coming with me to my last treatment!! You are so wonderful and I love you to pieces. Thank you to my husband for bringing me beautiful flowers at lunch to celebrate my last chemo - you are my soul mate and my best friend.... I love you so much. xoxo
Wednesday 10th February
I have produced my first group in facebook 'LRCC proposed job cuts to Cancer support nurses' and have emailed Jack Layton (who is currently going through prostrate cancer and Ed Holden who is my local MP) to get the word out. I have also agreed to do an interview to help get the word out. I am very concerned that this is a poor and ill-thought out decision by administrators who clearly do not understand the critical impact that this will have on patients now and into the future. I would like to see some pay cuts from administrators who seem to know little about the workings in their own domain. One can only hope that there is enough uproar to get attention and to revoke this proposal...... To all my cancer friends, I will not let this go!!