Monday 23 June 2014

The Biggest Thanlk You

My blogs of late have not been the most uplifting, which unfortunately is the ebb and flow of living with cancer. However, while this one may be short and sweet I hope it is one that makes you smile as I have been since yesterday.

One of our daughters joined the competitive world of women’s roller derby a couple years ago and in the last month or so came up with the idea to do a charity scrimmage in my hometown of Walkerton and the money raised could be donated to charities of my choice. Along with her friends and other competitors in the derby world they start working on an event that culminated yesterday into one of the most overwhelming days of my life.

Aside from the fact that we had well over 500 people attend and made over $10,000, it was the ‘derby love’ in the room that was palpable and experienced by everyone in attendance, including those who had never had any involvement with roller derby before. I had to struggle to keep myself from losing it a few times, like when two young members of the junior squad presented me with a bracelet they had made for me though they had never met me; or when I pulled into the parking lot and saw family members I hadn’t seen in years, who had travelled many miles, just to come and support me and the event; or when I saw the tables full of donated prizes so generously provided by people and businesses in my community and beyond; or when I read the list of sponsors who made it possible to cover all the expenses related to the day.

All these moments were overwhelming for me but none more so than when I had a quiet moment to myself and was able to look around the crowd and take it all in. To see the friends and family from across Ontario hugging each other and catching up….to see my own children running around doing jobs that needed to be done, smiling all the time… see my family and friends helping flip burgers, sell tickets and hug each other… see my children’s friends come and volunteer their Sunday because they wanted to support our family. In that quiet moment, taking all that in, I truly experienced what love is, what hope is, what blessings are and what miracles can be.

It was a long week leading up to the day as I was anxious about how I was going to feel and there were even times when it was touch and go whether I would be able to attend or not. But I prayed more than I have in years and envisioned a positive day. It turned out to be all that and more.

As I continue to try and find ways to deal with the cancer and the treatment side effects I will be able to think back on this day and remember how it was more than I could have ever envisioned. I won’t even try and thank all those who made it such a special day for me because as my grandson says that would be “to infinity and beyond.” But please know that you are appreciated and loved and remembered by me and my family always.
Until next time……carry on.

Monday 9 June 2014

In Sickness and in Health

When I found myself lying on my bathroom floor two weeks ago, in the fetal position, my husband beside me with an enema bottle, a lot of thoughts went through my head. One of which was I have to write about this. And, I needed to do it before too much time had lapsed so I could still feel the raw emotion of it all. Hence, here is my return to my blog after a few weeks’ absence.

It’s not that I have a sado-masochistic relationship with my readers or that I’m determined to gross people out, but rather that I’m committed to writing and showing all sides of cancer. One of the reasons I started the blog was so that other people going through a similar experience, or caring for someone who was, could learn, relate and not feel so alone. I vowed I wouldn’t sugar coat anything or hide things that might make people feel uncomfortable because I wanted to be authentic. This brings me back to the enema.

One of the hardest side effects of pain medication for me has been the constipation. Of course the more I stress and think about it, the worse it gets. Eventually, the pain is one of the most unbearable for me, crippling me every time I try to walk. In fact, the only time I have relief is when I don’t move at all so I spend a lot of time in bed, not moving. In trying to deal with it, I take numerous laxatives and stool softeners, but it gets to a point where there can be no action with additional help. Nurses toss around words like impacted, extraction, enemas. I toss my cookies just thinking about it.

I’ve never had a colonoscopy and don’t deal well with any talk or treatment related to things of that nature. It’s probably one of my biggest fears so despite the pain I was in I just couldn’t comprehend doing what I knew needed to get done. I loved the nurses’ description that I would be feeling much better within 15 minutes, but making the decision was a tough one for me. In the end, I decided I needed this to be administered by my husband because he knew how scared and uncomfortable I was with the idea and so I figured I could use all the empathy I could get. I knew the nurses would be empathetic and compassionate too but, I just wanted to be in the comfort of my own bathroom and cry like a baby if I wanted to.

This was a tough call because I still had some pride and wanted to hang on to as much dignity as possible. “Please,” my husband said, “I saw you give birth….your dignity was lost a long time ago.” Fine, I agreed, but I told him I was going to write about it and he was going to be a lead character. He wasn’t so crazy about that. He asked why I couldn’t just say a miraculous angel descended on me and gave me relief. No, I countered, this was not going to be the immaculate extraction.

To feel like I needed to have some control I insisted that he read every warning, instruction, hazard symbol on the bottle. Even then I didn’t trust I was getting all the goods and because I couldn’t read the bottle myself, my daughter generously agreed to type out everything that was on the bottle in an extra-large font so that I could read it myself. God bless her because that meant not only was she learning step by step what was going to be done to me she also typed it knowing her dad was the one going to be doing it. It wasn’t long after that she bought me a magnifying glass to be able to read all my other medical instructions up close and personal all on my own. Too much information is now an understatement in our house.

So there we found ourselves, husband and wife, bathroom floor, in a position I never would have imagined. I wept knowing fully for the first time since all this started what it really meant when we said those vows ‘in sickness and in health’. In the end we got through it and it worked and while I wasn’t quite doing the happy dance I felt better than I had in weeks. It was a good thing too as it was just the start of a rough couple weeks ahead where I at least had one major issue off my health plate. I am diligent about continuing to take laxatives and I live on watermelon and liquids. I hope it never gets to that point again but if it does I know there is a solution and I know I will be able to get through it thanks to my partner.

Later that night after I picked myself up off the bathroom floor I tweeted the following “going outside your comfort zone, pushing through pain and having someone with you who you trust 100%, that’s when good shit happens.” I had a lot of people favourite and retweet that and I don’t think they realized how literal I was being, but whether it’s literal or figurative, it sure is true.

Thank you to all those who have told me how much they have missed the blog but understand how important it is for me to rest and get better right now. I do hope to continue writing in the coming weeks but it may not always be weekly. I am constantly feeling blessed by all the support and kindness shown to me and my family.

Until next time…..carry on.

Monday 26 May 2014

Break Time

Hello Everyone....this is going to be short and sweet. I am taking a few weeks off from writing my blog. I'm hoping to get lots of rest and get some good results from the next course of treatment so that I can come back and write blogs that are worthy of the standards you all deserve. Energy is a commodity in short supply for me right now and I just don't feel like I can do my writing justice while I want to focus everything I have on getting up to par (or sub-par at least!).

You all have made me feel like a rock star in the last few months and I'm so honoured and humbled by your words and support that you all offer so graciously. I love that so many of you look forward to the blog each week and I am sorry for those who will be disappointed to read this week's. Believe me, I am disappointed as well. I get just as much out of writing them as many of you get out of reading them.

I believe it won't be long before I am writing them again. Please continue to keep your prayers and positive thoughts coming as they help me and my family tremendously.

I hope to have (good) updates in the next couple week but until then.......carry on.

Monday 19 May 2014

Adapting to My Reality

If you've been reading my blog recently or you are someone who sees and talks to me on a regular basis then you know it's been a rough couple weeks. What started as a cough, turned to pain that sent me to the ER twice and then culminated last week with another hospital visit due to severe nausea and vomiting. Though I wasn't scheduled for another scan until July, the doctor ordered one last week to see if anything had changed in the seven weeks since my last scan. It turns out something had.

The cancer has now entered into my liver, with several tumours spread throughout and one larger one which is the source of the pain. Until it was confirmed by the doctor, I had been trying to convince myself that the symptoms were side effects of the new medication. Terry was hoping it was the flu. Even though I've been resistant to it up until this point in my life, there was a flu bug going around so we was trying to convince himself of something too. I snapped at him, saying, "it's not the flu" which was wrong I know, but when I'm scared and anxious I snap, usually at him. Luckily he has adapted. As have so many others, to their credit and my unending gratitude.

Thank you to those who have had to deal with my changes--change in health, change in lifestyle, change in behaviour--and have changed accordingly. It's more than a person should ever expect but I'm so grateful. I can no longer stay up past 10 pm and I can't drink so while I never thought of myself as a party girl, I don't love the night life like I used to. Thank you to those who have worked around that, who now visit me at different times, who bring movies to watch instead of wine to drink, who sit with me at auctions instead of on bar stools and who still suggest road trips, only now to Shopper's Drug Mart.

My kids are all adapting at different paces, because of their different personalities. Acceptance comes harder for some but they're all working really hard at it. My grandkids have adapted well though they don't realize it. The eight-year-old remembers that I used to play endless games of mini hockey or pitch balls to him for an entire afternoon. Luckily, he's at the age where he now has many friends he'd rather do that with than his Grandma so we both win because I still get to see him run around and have fun and he thinks I'm giving him his space. The three-year-old, unfortunately, will never have a memory of me playing hockey and ball with him, but last Friday he got to make me pretend soup in a big vase with all kinds of ingredients and feed it to me over and over again. He was in his glory. It's just a different memory.

My husband has adapted in ways too numerous and personal to list, but what I have treasured the most is how he has filled in for my own body parts that have failed me. He is my legs now in the middle of the night when I need extra pain medication. He is my hands when I'm too weak to open a bottle. Most recently, and most hard for me to accept, he is my eyes when I need to read and get information.

The tumour in my eye seems to have grown with the tumours in the liver to the point where I don't know how much longer I will be able to write this blog. I'm writing this one in the largest font I can and it's still taking me twice as long. I'm regretting more than ever not taking a typing class just so that I'd at least know where the keys are without looking. I type a mile a minute (usually) but never realized how much I relied on looking down at the keyboard to see the letters. I stopped reading books about a month ago and the newspaper reading ended this week. I'm hoping to be able to increase the font size on my phone so I can still read messages but that may be the next casualty of my clouded eyesight.

A few posts back I shared my doctor's ABCD treatment plan but with this latest progression, we've had to stop step B only a few weeks in, skip step C altogether and go right to step D, the final step--IV chemotherapy. That will start in two weeks and will continue every three weeks for as long as it works. We hope that means things slow down, maybe shrink a little, and, most importantly, give me some quality of life. Oddly enough, I'm not as anxious as I am to start this as I might have been if we'd done it right at the start last fall.

My only experience with IV chemo to this point has not been a pleasant one. I think that's partly because the first time around, other than the lump in my breast, I had no acute physical symptoms of cancer. I had some achiness in my armpit and was more tired than usual, but overall I felt in pretty good health. With the chemo came the nausea, vomiting, pain, constipation, mouth sores, etc. I only felt sick when I was treating the cancer and that's what I wanted to avoid experiencing again.

But this time around I've been dealing with all those symptoms because of the cancer. My doctor said the chemo might actually give me some relief so, while I won't go so far as to say I'm looking forward to it, I will say I am hopeful there will be some positive outcomes. I guess I've adapted to my situation as well.

Adapting to our environment is how we survive. My friends and family who have adapted to my situation have made it so much easier on me and I think it's helped them as well. After I snapped at Terry for suggesting that maybe I "had the flu" I did apologize but, I also explained that being in denial about my situation not only is a disservice to him but it does me no favours at all. I don't expect everyone to be able to handle what is happening to me and I know not everyone is good at adapting or accepting change, but I do know I need to be surrounded by people who understand the reality of my situation. That doesn't mean they know exactly what to say or do all the time. It just means they acknowledge the situation.

That's not to say I am not extremely moved by what some people have done for me in recent weeks. I woke up one morning this weekend to see a family member had delivered some homemade muffins that were a godsend and the only thing of sustenance I was able to keep down that morning. So I ate almost all of them. A couple weeks ago I came home to find a beautiful, hand-knit shawl left by someone I've known for years but don't get to see very often. After reading about how yucky  I was feeling she wanted me to be comfy and warm. I am every time I wrap myself in it, not only because of the fabric but because of the love with which it was made. I received cards in the mail from loved ones who wanted me to know I was in their thoughts. And, yesterday afternoon, a very special friend, after learning about the latest development, dropped off a lovely plant and card. She knew I wasn't going to be home but she wanted me to know she was thinking of me.

It's not these specific acts or items that mean the most to me but the fact that the people doing them are showing me that they understand and acknowledge what is happening to me. They 'get it' and they want me to know they get it. Other people show they get it just by listening to me. As stated already, I'm not able to be as social as I once was and so I'm not up for company all the time (with warning I can get there though so please don't stop inquiring about visits!). I love that the people who love me realize that and are okay with it even though I know how much they want to be here with me. My mom is one of those people. She will drop everything in a minute and be here with me (and has offered to do that several times) if I need her to be. I love that she wants to do that and I love that she understands that it's just not something I'm up for right now.

Others have showed me that they get it by what they say. The common denominator amongst the people closest to me, when they found out about this latest setback, was what they said to me. Everyone, whether in an email, in person or a text, said the exact same thing. "I don't know what to say." Which was the perfect thing to say. I don't know what to say either.

The best I can hope for is that people in my life can accept my reality, adapt to that reality if possible, and leave denial where it belongs--in Egypt (cue the to get my cheesy humour in there somewhere!).

Until next time.....carry on.

Monday 12 May 2014

Mothering Days

One of the things that changed for me after the word terminal became part of my vernacular, was my approach to holidays. Each time one rolls around, whether it's Christmas, birthdays or family vacations, I can't help but wonder how many more I will celebrate. This can be dangerous as I find myself perhaps going over the top or spending more than usual to try and make it as memorable as possible. I often joke that I will be one of those lucky buggers who outlives their prognosis but will be dead broke from living my life to the fullest.

Mother's Day isn't quite like one of those holidays. Don't get me wrong, I love and appreciate everything my kids do for me on Mother's Day and was thrilled that I got to see each of them yesterday, especially since they all have busy, active lives and not all of them live just around the corner. But, I don't need to see or talk to my kids on Mother's Day to know I am loved and honoured by them. That happens regularly when I get random visits, hugs for no reason, and texts in the middle of the day just to check in on me or share some good news.

Yesterday was one of my favourite kind of days because it was warm and sunny and I was surrounded by family. When I reflected on that last night I realized that I don't worry so much about not being around for another Mother's Day, but I do worry that I will never have enough time to be able to tell and show my children how much they mean to me and how they have all, individually and as a unit, changed my life.

My kids are all adults now, though the youngest just barely, but I never experienced empty nest syndrome. From getting on the bus for the first day of Kindergarten to heading out the laneway to post-secondary school, I couldn't wait for my kids to start each new journey of life. Every time they were presented with an opportunity, which included travelling to foreign places alone or moving across provinces, I always encouraged them to go for it. Would I miss them? Absolutely. That just gave me more reason to travel myself so I could see them as much as possible. I want them to experience as much as they can, as often as they can.

I've never wanted my kids to need me. I know that doesn't sound good, but let me explain. When they were little and wanted to know what something said, I told them to 'sound it out.' As they got older  I made sure they knew how to cook, wash their clothes, drive, make an appointment for themselves, order their own meal in a restaurant, board a plane and make decisions. It doesn't mean I wasn't there to help them if needed, but my goal was always to raise four independent and self-sufficient children and I think I have (of course only with the help of their dad). The best words I can hear from them is when they say, "I know I don't need to do this, but can I just run something by you."

I've tried hard to resist giving advice (it's really hard) and instead I like to listen. I listen when they talk about things they like to do or things they enjoy and tuck that away to reference when it's time to buy a birthday or Christmas gift. I listen when they need to vent or just talk through a plan out loud. My kids aren't perfect and I've never pretended they were (they would say the same about me as well). I love them unconditionally, without judgement, whatever they do and whatever they say. Their opinions are sometimes different than mine and that's okay too. I love that they have opinions, often strong ones. I love that they can stand their ground on issues that are important to them. I love that they can look people in the eye and have a conversation about all kinds of different things. I love that they are passionate about what they do, whether it's work or hobbies or sports. My kids are all incredibly smart, not because of any letters they may or may not have at the end of their names, but because they engage in the world and learn about things that matter to them and to others. They are also all incredibly funny, in completely different ways, which means when we are all together, while it may be chaotic, there is always laughter. Okay, maybe they are perfect.

There are distinct things about each of them that I love but I have to be careful about getting too specific 'cause they're all just so damn competitive (which I think is a good quality as long as they also show sportsmanship).

Our oldest can be a little guarded, like me. She keeps her emotions in check. I have seen this girl in incredible pain and never shed a tear. When people talk about not knowing how some women do as much as they do, she's one of those women.  Many times I've learned how to be a better mother by watching her. She epitomizes the phrase 'work hard and play hard.' It's not often I get to see her relax so when that happens I just sit back and watch her. When she pulls up a patio chair to settle in for the afternoon or, more rare these days, when she curls up on our couch in front of the fire, it's a good day. Sometimes I feel like we grew up together. We can be silent in each other's company and yet feel so comfortable. When she walks into the house it becomes home.

The second oldest is the complete opposite in so many ways. She wears her heart on her sleeve and it's a big heart. We can take her hands in ours, look her in the eyes and tell her we love her and there will be gigantic teardrops streaming down her cheeks in seconds. This is true. Her dad and I have done it many times over the years just to see if we still can. We're mean that way. She has been telling me things since she was four-years-old. About herself. About her friends. About a special rock she found in the backyard. About the world. If there is a child I live vicariously through it's her, not because she has done anything more extraordinary than the others, but because at 30-years-old she still looks at everything with wonder and awe.  I know she has tough days but she is the most consistently happy person in our family and when I've spent just a few hours in her presence I feel joy.

Our next one is the only boy. He is strong and masculine and a hard worker, yet he's never ashamed or embarrassed to show his love for me. He has no problem giving me a hug and telling me he loves me whether it's in a shout-out on Twitter or in front of his friends. I love how honest he is, not just with me, but with everyone. Sometimes that gets him into jams, but it always makes me proud. It tells me that he knows, that no matter what, he will always have a family who supports him and loves him unconditionally. I always have his back and I know he always has mine. And, at the risk of offending anyone else in the family, he makes me laugh like no one else can. But more importantly, he always makes me smile.

Our youngest came along a few years later. Because of that, for a lot of her life, it's been just her and me. She challenged me from the get-go and kept me on my toes just when I thought I could get comfortable and complacent (being child number four and all). She is just starting to get her footing in the word, barely out of her teen years. Those years were a struggle for her, and as a result, for us. In our quest to get her healthy and happy, it almost broke us. Almost. My mind still can't go to the place that knows how close we came to losing her. Today, she is someone who I draw my strength from. She shows me every day what the word resiliency means. If there is such a thing as a child being your soul mate then she is mine, because I know I live within her and she lives within me. Her spirit gives me wings.

With all of my kids, I didn't always come at it the right way and I made a lot of mistakes. The poet Maya Angelou says, "when you know better, you do better" and that's a tenet I try to live by. As long as I can own my mistakes, learn from them, and do better, then I hope they will continue to forgive those mistakes. I don't believe they are done needing a mother yet, but likely no mother ever does. I know I'm not done being one yet. There are graduations I still need to see. There are grandchildren I still need to meet. There are weddings I still need to attend and vacations I still need to be part of. There is listening I still need to do and hugs I still need to give. There are stories and experiences I still need to hear about.

Every day I negotiate for one more--one more holiday, one more year, one more milestone. I pray to an entity I'm not sure exists that I can be here for as long as it takes to make sure they are all where they need to be in life. It's not about how many Mother's Days I have left but how many days I have left to be a mother and for me that will never be enough.

Until next time.....carry on.

Monday 5 May 2014

Feeling Tired is Exhausting

I have a medical assessment I must undergo each month before I can take a certain injection. Here are three questions I am asked each time (amongst others):

1. Are you tired?
2. Are you fatigued?
3. Are you drowsy?

These are three different questions. Seriously. I still don't know if I understand the difference between the three but just trying to figure it out left me exhausted. To make it worse, I'm asked to rate my level of tiredness, fatigue and drowsiness. I always find this a difficult task because I don't know what my baseline is supposed to be--since I was diagnosed? Since I've been an adult? Since I've stopped drinking?

Sleep has always been elusive to me, at least since I've left my teen years. On average I probably get five hours of sleep a night, usually only about three of it uninterrupted. This has been standard for about the last 20 years and I do okay I on it. I may not always wake up feeling refreshed but once my day gets going I'm good until bedtime. I've never been one to nap during the day and have always had a hard time understanding grown-ups who do. Even a 10-minute catnap would keep me wide awake past midnight. This ability to function at a high level with little sleep has served me well over the years such as when we do our annual Black Friday shopping trip, which requires sharp decision-making skills and quick reflexes for about 36 hours straight, or when I decide I'm going to watch the whole fifth season of Sons of Anarchy over a two-day period.

The Merriam-Webster dictionary defines the three words as:
  • Tired--feeling a need to rest or sleep
  • Fatigued--the state of being very tired: extreme weariness
  • Drowsy--tired and ready to fall asleep
My own interpretation is that you can be tired but might not necessarily be able to go to sleep. Your body needs it, but maybe your mind or your schedule won't allow it. So you burrow through, usually get a little grumpy in the process, until you are fatigued, which means you have no trouble falling asleep when your head hits the pillow. Drowsy, I'm not sure about. I think of this as an environmentally-induced state, perhaps from medication, a boring speaker, or something I used to do a long time ago, in college, when I occasionally inhaled.

However I defined these terms, it all changed with my cancer diagnosis. I've said before that the body is consumed with a level of fatigue that's hard to describe. Cancer-related fatigue is different than other fatigue such as that experienced by new parents (though equally frustrating having now experienced both).  This fatigue lasts longer and sleep doesn't make it go away. For the first time in my adult life, and not as a result of a hangover, I've said "I need to lie down." In the middle of the day. I've not been able to muster the energy to do very simple things such as a crossword puzzle (which I used to do religiously). I read a blog recently written by a man who has been a cancer patient himself and also had a brother who died from cancer. When describing the fatigue that came with it he asked the readers to imagine themselves laying on the couch with their body turned inward toward the seat backing. The TV is on and something is clearly happening that is interesting. You're curious, but don't have the energy to turn over and face the TV to see what it is. That's what cancer-fatigue feels like, he wrote.

I hadn't experienced anything quite at that level until last week. I'd had a rough week with coughing, which led to increased pain, which led to increased dosages of morphine.  This meant I was feeling a lot of that environmentally-induced drowsiness I mentioned above. I found myself going to bed around 9 pm, sleeping right through until about 5 am, taking another pain pill and going back to sleep until sometimes 10 am. Because I am taking a slow-release pill in the morning, and then fast-acting pills for breakthrough pain every three hours, it meant I was also nodding off about every three hours.

I couldn't read text messages, return emails or even answer the phone because of energy I just didn't have. I went from my bed, to the couch, and back to my bed, for five days straight. By Friday, I'd had enough. I was sick of being tired so I forced myself to go out for lunch with my husband and do some simple errands. I came home and slept for two hours I was that worn out. You'd think I had just run a full marathon instead of my brother (yes, I proudly had to get that plug in for my bro---yay congrats on that again!).

The reason for cancer-fatigue is often linked to the treatment of the disease---it's a common side effect of radiation, chemotherapy and other medications, such as pain killers. But fatigue can also be a symptom of the cancer itself. According to the American Cancer Society this can be because cancer cells use up much of the body’s energy supply, or they may release substances that change the way the body makes energy from food. Whatever the cause, the result leaves me feeling annoyed and frustrated. I don't like having to say I'm tired all the time. I feel lazy when I can't even do simple chores around the house or outside and I feel useless as a contributor to my household and family.

People are sympathetic but I know they don't understand how I can be as tired as I am when I haven't done a single thing in five days. I barely understand it so I don't expect others to know unless they've gone through it themselves. So, if you are a cancer patient and know what I'm talking about feel free to comment on this blog. But if you're too tired to do that I totally understand. I'm not being facetious when I say feeling tired all the time is exhausting and sometimes it means not being able to do the things you want to do. Another thing to accept.

I decided I couldn't aide and abet my already cancer-fatigued body so on Sunday I stopped taking the fast-acting morphine for breakthrough pain. Yes, it meant dealing with a little more pain during the day but it also meant being able to make it through my niece's First Communion without falling asleep (I already felt like I was on the bad side of the priest so I didn't need to add to that) and being able to get back to work this week and start a new contract. Don't be quick to label me with martyr status quite yet though. The slow-release morphine which we increased in dosage is building up in my system meaning I have longer painless time periods during the day. I'll be going over my pain management plan with my doctor this week so we may add something into the mix that has less side effects. In the meantime, while interacting with me, if it seems like I'm more tired, fatigued or drowsy than usual, don't be offended. It's not you, it's me.

Until next time......carry on.

Monday 28 April 2014

My Cold Is Laughing at This Blog Title

I'm a somewhat superstitious person so I knew I was taking a risk with the title of this blog and felt like I had to 'knock on wood' each time I read it. Non-superstitious people will just say it was inevitable that I would get sick sooner or later. From whatever side of the coin you want to flip it, the end result is I sit here today, sick with a cold. It's the first time since I started this blog that I had no motivation to write it, so it will be short and sweet.

When you have cancer, a common cold is not just a pain it can be dangerous. My immune system is already compromised because of the cancer and the drugs I take. Any infection means all my healthy blood cells will travel to the place of infection to try and kill the virus or bacteria that is causing the infection, like they would in a healthy person. But when my healthy cells take a vacation to another part of the body, it leaves the cancer cells free to do their dirty work with no supervision.

The cough started a few days ago and progressively got worse. A chest x-ray was needed last Friday to confirm that it wasn't an infection and luckily it showed it was just a regular common cold. The tricky part for me is the pain that comes with everything. It's magnified when I cough. It's not impossible, with the state of some of my fragile bones, especially in the rib area, that I could fracture a rib just from a severe coughing spell. Several hours in the ER this morning confirmed that didn't happen but that didn't mean the pain went away.

Once again, I am so fortunate to live in a community with an amazing health care facility and team. The doctor I saw in the ER this morning is the same one who ordered my x-ray on Friday. When he told me there was no fracture I was relieved, but still frustrated. "What is causing this (insert expletive of your choice) pain?" He took both my hands in his and said, "My, dear, it's the cancer. Cancer is causing the pain." Oh. Okay. Who do I see now that I'm feeling like an idiot?

I'm never in denial that I have cancer and if you've been reading this blog from the beginning you know there have been a few rough days here and there, but I never expected to be feeling relatively healthy (I spent Saturday night having a blast in a casino) and then just wake up in the morning with unbearable pain. I thought it would come on slowly. I thought I would feel other symptoms first. I thought I would have some warning (my doctors will tell you they have been warning me about this all along). Nope, the ER doc said, this is basically what happens. Because there is spread to my right lung, I always have fluid there, what they call pleural effusion. Surgery last summer has tempered the fluid quite a bit but with the coughing, the doctor said, came inflammation. Inflammation, I've learned, might be the force of all evil when it comes to cancer but I'll save that for another time. Basically, the inflammation, in the pleural lining, and around my chest wall, is causing the pain. The pain could dissipate when the cold does, or it just might be the next stage of pain to deal with, given the spread throughout the bones.

The solution when the pain increases, is to increase the pain medication. My twice daily slow-release morphine has now been doubled and the fast-acting morphine I've ignored in the bottle for several months I will now be reaching for every three hours, at least for the next few days. This means amping up the daily dosage of other medication that comes with increased levels of morphine. I don't want to provide too much information but let's just say that if you read this post and say "shit happens" well, I can tell you, with morphine, it actually doesn't.

Add to this the cough suppressant I'm taking and it's safe to say for the next couple days I'll be incommunicado.  I won't be responding to many texts or emails or be out and about driving my vehicle, which is actually now considered a weapon with this level of pharmaceuticals in my system. I've always believed in the power of sleep to heal the body, so that's likely what I'll be doing for the next day or two. By this time next week I hope to be back blogging up to my normal standards. Thanks everyone for plugging in each week, providing me with such encouragement and strength. I drew on that to motivate me today.

Until next time........carry on.

Monday 21 April 2014

Tough Pill to Swallow

It's not often I have to do something I don't want to do. Maybe this makes me spoiled or stubborn but I like to think of it more like problem solving or conflict resolution. However, for the past week  I've had to do just that because my course of treatment has changed and I am now on a prescription that I don't want to be on. It's literally been a tough pill to swallow each morning for the past seven days.

After reviewing my scans since treatment started six months ago my oncologist recommended that I switch medications since the one I've been taking was not working well enough. The cancer in my lung has stabilized (good news) and there has been no spread yet to soft organs like the liver or brain (also good news) but there has been significant spread through the bones (not good news). My eye tumour has been harder to assess. It does not appear to have increased in size but there is a lot of fluid around it that is impairing my vision and making it difficult to know for sure whether it has increased in diameter. Both doctors agreed it was time to change the drug protocol. I guess you could say they see eye-to-eye on this issue. (Sorry--sad attempt at #tumourhumour).

My qualms about taking this new drug stem from the potential side effects that I've read about through my own research and talking with other cancer patients. I knew it was a possibility I would have to take it one day, but that day came sooner than I had hoped. Obviously, the final decision for any course of treatment rests with me. My doctor did not force me to take it nor did he shame/guilt me into the decision. In fact, he couldn't have been more gentle and understanding. It was the first time since starting treatment that I had a complete meltdown in front of him. There have been some teary moments at times but this was full-on-ugly-cry mode. I did not want to hear that I needed to take this drug and in that moment I understood how my kids felt when they were little with colds and I made them take that awful, pine needle-tasting cough syrup. I wanted to go back in time and tell them they didn't have to take it in an attempt to reverse this bad karma moment I was now facing.

I explained my fears to the doctor and he acknowledged and validated them. For almost an hour he told me stories about other patients, handed me tissues, and, eventually, told me why he was recommending this as the next step. He outlined his A-B-C-D treatment plan for patients with Stage 4 cancer. Step A is what I had been doing and it was not working. Step B meant switching drugs and in six months he'll reassess. If things have stabilized I will stick with Step B, otherwise it's on to Step C which is actually the same drug from Step A but with another drug added to it. Lastly, and hopefully a long way off, is Step D which is intravenous chemo.

Ultimately, I agreed to Step B, albeit reluctantly (I still don't fully understand why I can't skip Step B and go right to Step C but I do understand the need for order). Some of the side effects of this new drug mimic that of IV chemo such as nausea, hot flashes, weight gain and hair thinning, but those are all manageable and things I've lived with before and can handle again. The biggest concern I have is related to blood clots and stroke. This is an invisible side effect and can hit with little warning and for someone who likes to be in control at all times, this is not a great mindset to have. My anxiety over this didn't get me further than the resident social worker's office. It was suggested I try deep breathing and visualization, but when all I could see was the bold warnings on the prescription package my deep breathing turned to hyperventilating.

Before leaving the doctor's office he stressed that it was important I embrace this next step otherwise, subconsciously, I could negatively impact its effect by forgetting to take it or taking it at different times of the day. I doubted this would happen. No matter how much I didn't want to take this drug I knew how important consistency was with chemo treatment. Admittedly, there have been mornings I've stayed in bed longer than I needed to just to put off swallowing my morning ritual of meds, but I eventually get up and face the music. I told the doctor I understood and was somewhat offended that he thought I would do anything to sabotage my treatment, unknowingly or not. Then, I forgot to take it on the first day I was supposed to start. On day three, I planned to take it with me when I went out for breakfast but left it at home by mistake and so ended up taking it much later in the day. It appeared there was something to this subconscious scheming after all.

So, it's been a week today and I've had to take stock. I've had to accept that it's better to be at Step B than Step D. I've had to weigh the risks against the benefits. I've always been a gambler so when it comes to the worrisome side effects I need to believe the odds are in my favour. And, I need to figure out anxiety-reducing techniques that work for me. Ironically enough, the one that is getting me through this week so far is also A-B-C-D-related. My oldest daughter recently sent me a voice recording of my 3-year-old grandson reciting the alphabet. It is the sweetest, purest 20-second sound bite I've ever heard. Since first receiving it I've played it several times, including this morning, right after I took my pills. It made that medicine go down easier than a spoonful of sugar.

Until next time.......carry on.

Monday 14 April 2014

Ode to Friends

The topic of friendship has been popping up in many conversations I've had lately. Having a friend to lean on, talk to, laugh with, can mean the difference between a good day and a bad day. I'm not someone who has many friends but rather a few very close ones that represent the different phases of my life. Since being diagnosed with cancer never have those friendships meant more.

I met my first friend when I was three years old and there hasn't been a time in the last 46 years when she hasn't been my friend. Our lives headed in different directions and geography keeps us physically apart for years at a time but when we do see each other it's like time has stood still and we're still little girls who like to sing, giggle and be limited only by our imaginations. She reads this blog and is one of the first people to send her encouragement.

I have another friend I've known almost as long. There was a time in my teens when my life got a little off track. During this time I thought she was someone who no longer fit into the life I wanted to live. I was a coward and wrote her a letter telling her our friendship was over. She wrote me back and basically said she would not accept this 'unfriend' request. She knew what we had was valuable even when I was too stupid to see that for myself.  I'm so lucky she forgave me and for as long as I live I will never be able to express how grateful I am to her for that. She reads this blog each week with her daughter and together the two of them have become my greatest cheerleaders.

When I went away to college I met a large, diverse group of people. It was probably one of the most social times of my life and within that group there was one girl who became my closest college friend. We listened to Bob Dylan and spent endless nights talking about the politics of the world and how we, as young journalists, were going to change things. We also shopped and entered dance-a-thons. We posed for pictures together on graduation day and then lost touch. I didn't see or talk to her for over 25 years but thanks to a brave new world that includes facebook we re-connected a couple years ago. She reads and shares this blog weekly and has been an amazing supporter and advocate.

When I moved to Walkerton in the mid-80s and was on my own for the first time I became friends with two women who today are still my closest and best friends. I usually talk to one or both of them several times a week. One of them spent some time recently reading through old journals and she came across a poem she wrote for me in the early days of our friendship. It's clear from the start she had insight into my soul that explains why to this day there is nothing she doesn't know about me. When I was diagnosed the first time four years ago, after my family, these were the first two people I needed to tell. I sent them both a text asking them to come see me that night. They both responded within minutes saying they would be there. No questions asked. That's when I truly knew how important their friendship was to me. Of course, one came through the door thinking I was going to say I'd won the lottery and the other was more anxious, anticipating bad news. Their differences are what makes our friendship trio unique. They both read and share this blog weekly.

Amongst these friends I've mentioned is also a scattering of other women who are treasures to me. They round out my small circle of friends with their unconditional love, support and hugs. So, when I was diagnosed in early 2010 I believed I was set in the friendship department. I was too old to make new friends and frankly thought it would be too much work. I was 44 and felt I had all I needed. But with the diagnosis came a whole new set of feelings, fears and emotions. I had reluctantly been inducted into a new club that came with its own language and rules---one that none of my friends shared or truly understood. As supported and loved as I felt, I also felt very alone.

Then word got out that I was a new inductee to this club that unfortunately had a solid membership base in the area. I was invited to literally break bread with a group of women who had all been diagnosed with breast cancer. The term 'support group' is avoided because when we meet for supper the last Monday of every month there are times when the word cancer doesn't even come up. But make no mistake, support is the number one thing we provide to each other. It is a sorority none of us asked to join and instead of secret handshakes there are hugs, pats on the back, knowing glances and silent understanding, but above all else, laughter.

Within this group I was able to make my first new, close friend in almost 30 years. We were around the same age and had been diagnosed within a day of each other. Our treatment cycles were in sync so we talked weekly, if not daily at times. We shared our fears, our thoughts about the future, our complaints about side effects. When January 2011 rolled around we celebrated our one-year survivor mark together and in January 2012 we celebrated the two-year mark. Later that spring, as she was preparing to move into her dream house, life was really looking good for both of us. The back and leg pain she was experiencing was thought to be from too much work related to the move. Then it became worse and she could barely move. And there was that nagging cough that wouldn't go away. By July she was back in the hospital. The cancer had metastasized in her lungs and likely her bones. Throughout that summer we texted nightly, she usually from a hospital bed. She was scared. She had decisions to make that she didn't want to or know how to. For the first time in our cancer-linked friendship I couldn't relate to what she was going through. I felt guilty for my health and helpless in our friendship.

She passed away in September that year, two days before my son's wedding. The day of the outdoor wedding it poured and poured, but by the time the ceremony got underway, the sun had come out and just as they said "I do" a beautiful rainbow appeared. I'm often skeptical about 'signs' and the presence of life beyond death but I knew in that moment, in that rainbow, she was there.

Now, two years later, I can relate to what she was going through and I miss the ability to be able to see and talk with her and not feel so alone in this new stage of cancer. I've already lived longer than she did once her cancer returned and so I look at each of these extra days as blessings and a chance to spend time with the friends I still have here with me. I worried that I would feel like an outsider in my women's survivor club because now I had advanced to another rung on the membership ladder, an insider's club of which I was the sole member. I needn't have worried because they've embraced me and supported me as always.

My other friends help me by simply just being who they are. Some make me smile, some make me laugh out loud. Some know just what to say with their words and others know what to do to pull me out of a funk. They all hold a place in my heart that is intrinsic to my physical and mental well-being. I'm always trying to think of ways to express how thankful I am for each of them and how valuable their friendship is to me, but I'm constantly at a loss for how to do that. I hope this ode to friendship blog helps and I also hope that long after I'm gone I have the power to send them rainbows when they need them the most.

Until next time......carry on.

Monday 31 March 2014

Tough Cookie or Just Cookie

I used to be a lot tougher. Any problems giving blood? Nope. Any issues with claustrophobia? Nope. On a scale of 1-10, with 10 being the worst, please rate your pain: 2, maybe 3. These answers have now all changed to "yep, yep, and off the chart." I might be exaggerating on the last one, but I no longer can trust my ability to assess my own pain.

These changes can all be traced back to exactly four years ago this month when I underwent my first chemotherapy session. Going into that session I didn't really even understand what chemotherapy was other than it was injected intravenously into my body and was going to make my hair fall out. I thought it was actually the name of the drug used for cancer patients. It's really just a generic term for the treatment of cancer through drugs and the types of drugs and the way they are administered are as varied as the types of cancer and the patients undergoing the treatment.

I did my treatment at a small, rural hospital that was a satellite location of the larger cancer treatment centre. On any given day I was seated beside men and women of different ages and ethnicity, all living with different types of cancers and at various stages. The common denominator was the compassionate and kind nursing staff that remembered all our names, family history and fears. I came in that first day with only the fear of the unknown, but in a matter of weeks I became anxious at the site of the town's welcome sign and felt nauseous just from the smell of the hospital parking lot.

The problem is that IV chemo treatment can be very hard on a patient's veins. While I'd never had any issues giving blood (had even donated blood for many years) I became one of those patients. After just two sessions, my veins collapsed and I'm sure Terry's hand almost broke under the pressure of squeezing it through the pain. It was clear we had to take another route. I had a port-a-catheter inserted in my chest cavity, which gave medical staff pain-free access to my veins for the next year. I just had to make sure I got it flushed clean every few weeks and alert airport security whenever I went through the metal detector.

Though it has been three years since I've had to take chemo treatment intravenously, I still have to undergo monthly blood work and have dye injected on a regular basis when having scans done. The port is long gone, which means a revolving door of nurses and lab techs deal with my rebellious veins that never recovered from the initial chemo treatments. There are some who just seem to have a knack for it and are able to get in and out with little trouble. I don't usually even realize I'm holding my breath until I exhale with relief when I see those talented people enter the room. On other days I've learned that keeping hydrated, keeping my arm warm, and turning my arm inward just slightly, giving the injector the right angle, helps a lot. This may seem resourceful on my part but I still feel embarrassed about the whimp I've become.

Even needles that are not anywhere near a vein have put a dent in my tough exterior. Only six months ago I was in the ER, waiting for a head scan and a nurse was giving me a shot for pain in my upper arm. "Be prepared," she said, "People seem to have a hard time with this shot and I think it hurts quite a bit." I barely flinched and smugly grinned with self-pride when she commented on my high pain tolerance. Cut to last week and as I'm getting what will be monthly upper arm injections for a bone builder drug, I hear the words "OUCH" (yes, upper case means it was yelled). I look to see who else is in the clinic and come face-to-face with my own big-baby reflection.

"Uhhm," I stammered. "I wasn't expecting that to hurt so much." She looked at me kindly and I was waiting for her to say, "Oh, yeah, this is the mother of all needles. Lesser people than you have crumbled under its insertion." Instead, I heard, "Well, you have a tan so maybe your skin is a little tough. You should be fine in a few minutes. Let me find you a Scooby-Doo Band-Aid." Okay, I made the last sentence up, but she might as well have said that for all the whimpering I was doing.

The last blow to my self-esteem came a few weeks ago when I had to undergo an MRI. This involves laying very still on a flat bed while a tube-like encasement slides back and forth over my body (think body-size straw). There is barely an inch of space between my nose and the tube and less than that on all other sides. It lasts about an hour and includes a series of loud banging and knocking noises. I've had an MRI before, as well as several other scans that have a similar set-up, so when asked if I had claustrophobia problems I replied with my standard "nope." Then something happened half-way through the test. I started to sweat, breath heavy and be overcome with a sense of 'get-me-the-hell-out-of-here.'

I had an emergency call button in my hand but I was damned if I was going to use it. If I couldn't make it through this safe, simple, and much needed, procedure, I was going to be in for a long couple years. I closed my eyes tightly and tried to remember the breathing exercises from prenatal classes I took over 20 years ago. When the technician said I had 30 minutes left I started going through my Harry Chapin song lyric repertoire. I got through two and half songs and was done. (Harry Chapin fans will see the humour in that).

I'm not sure if it's age or my body just rejecting everything and saying "enough", but it means switching up my game plan now when I have appointments. I used to wear my badge of toughness with pride so I literally have to get used to living in this new, softer skin. There are a long list of things I can take to help with the process. Pain relievers. Anti-anxiety medication. A companion. Shot of tequila. Whatever it takes to get over myself and get on with the procedure of the day I'll do. It's taken me a while to come to the realization that when it comes to getting needles, shots and tests I don't need to be a tough cookie. I just need to get a cookie.

Until next time......carry on.