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.


  1. My dear Cindy, thank you for sharing this most challenging and difficult journey with all of is. I can't imagine what it has taken for you to 'adapt' to the latest status.I hope you find writing these blogs a comfort. I am grateful to witness this and draw such inspiration from you. Hug those grandchildren for me

  2. Crappity, crap, crap! Actually the first words that came to mind were a long string of profanity which would neither be appropriate here nor serve to make the situation any different than what it is. I am sorry to hear there is progression and that you have been feeling awful.
    Cancer sucks! It obviously did not get the memo on the ABCD plan. It is not fair that the life you once had is slowly being sucked away by this horrible disease. It is not fair that you have had to skip step C altogether. It is not fair that you, your family and friends have to make this adjustment. It just isn't fair.
    I am praying that chemo will stop the cancer in it's tracks and give you pain free days and a decent quality of life.

  3. Cindy, I have read your blog over the past few months. Your husband, children, grandchildren friends and family have a wonderful person in you. I love reading your honest direct account of what, and how you are feeling, even though it makes me sad that a person has to endure this. You are a brave strong lady Cindy. No doubt, you will have helped many with your thoughts, emotions and feelings dealing with this horrible of all horrible demons. Wishing you peace and much love as you continue this path....

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