I’m feeling tired so I’m not going to edit this. If this makes me a bad writer - oh well. It’s been deterring me from posting, and it’s better out there then to sit in my drafts.
I haven’t written anything down in a long time so I’m not sure what’s going to come out next. I’ve been distracted - not busy - over the last few months. Keeping my mind occupied with things that don’t matter much. My concentration isn’t good. When I read a book it will take me two weeks or more to finish. That’s a lot when you have all day, every day. I wrote the trivia and did the graphics for my fundraiser. That was meaningful but again, took me hours that turned into days to complete. It’s only in the last two days I’ve really realized that. I haven’t even fully acknowledged it yet.
When I was able to use my right hand my therapy was to ‘write until I feel better’. The unconscious writing where the words are fluid and time goes by without you noticing, and next thing you’re crying and writing and then you feel a release and you stop. Shut the book and don’t look at the words you wrote. I’ve done this all my life. I’ve never known any other way to cope.
I am coming to the realization that I’ve been missing that from my life now for a few years. Typing was never the same, although I’ve tried a wide range of journaling apps. I would think faster then I could type. I had to focus on hitting the right letters. I didn’t feel the same gratification.
All those feelings and thoughts have been sitting on the surface. They’re always ready to pour out. When I have a bad day (or a string of bad days), I’ll call my mom desperate and crying for some relief of carrying around so much. There’s so much there that I can’t put it into words anymore. I just end up saying over and over ‘I just don’t feel good. I’m not right’.
This happened a lot to me over the summer. I’d be with friends and think, I should just go to bed. Everyone will have more fun when they’re not looking after me. I spend hours on my phone mindlessly, just trying to occupy my time. Then Jeff gets home from work; I’m grumpy, I’m mad. I can’t say why, I just am. My anger almost always turns into sadness and the real feelings come tumbling out. It comes out as anger and disappointment. I blame other people because I can’t face the fact that there is no one to blame. I can’t place these feelings on anyone. I have to work through then but I can’t. I stubbornly tell Jeff that I can’t change. I’ve tried, so hard. I don’t know how to.
Over the course of the spring and summer, I was in Xeloda and Tykerb. This chemo was an oral pill I could take at home. I preached the benefits of take home chemo; freeing up a bed and a nurse, less hospital visits, minimal side effects, more free time. Then I actually started taking 30 pills a day (my chemo and all my other pills I take to keep me in check). It was hard. Taking medicine on an empty stomach wad making me get sick nearly every morning. I was sleeping 12 hours, dreading taking more pills. Sticking to a strict schedule wasn’t easy for me. Which is why I usually didn’t.
I never thought I was killing myself until the end of September. By then I was so wrapped up on focusing my time preparing and talking about cancer, I was forgetting to take care of my own cancer. I had lost my sense of smell or taste, so things like chai tea lattes and movie snacks didn’t interest me anymore (we all know that I love my snacks). I would wake up and know that I had a likely percentage of getting sick, so I wouldn’t wake up. I would try and take all these pills in my shortened days (sometimes not getting up until 1 or 2), and I would fail, skip doses. I would hate myself for not being able to stay on track. I would hate myself for wasting my day, not accomplishing anything, feeling pretty worthless.
The fundraiser I set up on my cracked phone with little knowledge of how this may go turned wildly successful. I would tell myself - you did this. You are using your voice, speaking out, meeting new people, learning new skills. You are doing something worthy. Our final total equaled over $25 000 when I originally set my goal at $5000. My family, friends and compassionate strangers showed up, telling me through their actions that they cared and understood what I was going through. I desperately wanted to share the story of MBC, what myself and others have and will go through. I did that. It didn’t heal me. I never felt proud. I was still angry. I see now in all my posts that I was just translating my sadness, my anger, in a different way. I felt hollow at the end, realizing that I was so lucky, I felt so grateful, I just achieved a major accomplishment . Yet - it didn’t fix me. It didn’t take away my fear and anxiety.
After the fundraiser I knew I desperately needed some time to reflect on all of this. I didn’t know until I just wrote it out right now that this is what I needed yo think about. I wasn’t granted any time, though.
In the back of my head I knew that I was putting myself, my health, second. It wasn’t something I wanted to think about. I was riding the high everyday - selling tickets, gathering books, writing posts, running events. This was fun. I didn’t have time to think about anything else.
My last scans were stable, and my doctor had said the pills could be taken “within an hour or two each way” if I forgot. I didn’t admit at the time that I was constantly forgetting (or dreading) taking them; I took his advice and stretched it thin. I never took my pills on time. I would take it at 10AM one day, sleep in and take it at 2PM the next.
I realize that this sounds like a first world problem. People would trade places with me in a second. I live rent free. I live in Canada, with universal healthcare. For what’s not covered, I have a job with a fantastic health plan. I don’t want or need for much. I had this medication, which overall costs thousands of dollars and I .... wasn’t taking it?
On the Monday after the read-a-thon, I had a visit from a home care worker (I may be messing up her title, I can’t keep everyone that comes in and out of my life straight). She just wanted to touch base. It started with, your cats are so cute! What medications are you on? Then - “ what surgeries have you had?”. I started listing off my long list of scars for her (a mastectomy, my port, throat surgery, broke my arm a few times, two craniotomies...). I mentioned my family doctor had told me already that if it came to it, he would do home visits for me. I was comforted by that, but I opened up the conversation and she felt open to discussing my end of life plan. She wanted to know because ‘things can change any second’, so she could help my family make critical decisions, so she was informed of my wishes. She actually asked me if I had a will, if I’ve thought if I would want a DNR. These thoughts stay tucked away in the back of my mind. I compartmentalize them and don’t let them out. It’s what allows me to move forward and live a good life, keeps me on track, let’s me relax and still have fun. Appreciate others babies and houses and jobs. I can’t let myself think that way. This conversation brought it to the forefront though leaving me to respond with a lot of “uhhhhhs”, “I’m not sure”, “I’ll have to think about that”. I mean, I know I should think about that. I obviously do. Not out loud, though.
This planted a little negative seed in my thoughts and while I didn’t want to upset anyone, I desperately wanted to talk about it. I got mad at Jeff for not asking me more about my visit, throwing mean words around. My nurse visits are usually so routine, there isn’t much to talk about, so I get it. Still, I couldn’t bring it up on my own. I couldn’t speak freely about it. Until now, really.
With all of this, I was trying to focus on myself and vowed I would wake up and take this medicine properly every day. I made it my priority. Jeff would call me repeatedly to see if I had taken my dose. Within two days my oncologist called:
“Sam. I got the results of your CT scan. There are two Tumours in your lungs that have grown by half a cm. I believe the chemo you’re on isn’t working. I’m going to refer you to look into clinical trials”.
My heart stopped. I had no more time to correct my patterns, change my ways. It wasn’t working. I had so many doubts that I was the problem, it WAS working -I just wasn’t taking it properly. My oncologist gently told me that even if I was taking a small dose it would not have grown that much so quickly. I had failed another treatment.
When I was newly diagnosed 5 years ago, I remember him vaguely telling me that we had lots of good options but Xeloda and Tykerb looked promising and something about my last ‘good’ option. The thought kept circling in my head. I failed my last good option.
In the week I waited for my trial appointment I had convinced myself that this was it. It was telling that the home care worker had this conversation with me right before I got this news. You can’t even get into a clinical trial if you have active brain activity, and I hadn’t gotten the results of my MRI yet. My head has been aching, throbbing, I had been throwing up just to relieve the pressure I was feeling.
I teared up the night before begging God* to give me the grace to take the news, either way. I’ve never believed that you can make a change through praying. It’s genetics, it’s in your DNA, the scan was done weeks ago and you can’t change what is already printed on the paper.
* my therapist and I have spoken about belief regularly. She’s told me I should start looking into what, if anything, speaks to me. I don’t necessarily know who or what I’m talking to - maybe it’s my own conscience, soothing me and giving me positive affirmation.
I walked into my trial appointment, with a new oncologist. From my last trial, I remember it feeling very impersonal. I didn’t want someone I didn’t know to tell me I was dying with no other options, then leave me to deal with the aftermath.
To my jaw dropping surprise he came in, excited and smiling. Before we even said hello. He said “Your brain MRI is stable!”. I literally let out a surprised yell and curse word and Jeff and I squeezed each other’s hands so tight. We didn’t have much time before the oncologist excitedly told us that he has a plan, and he thinks it’s going to be a good one.
I’m still shocked. I’m waiting for all of the appointments that go alongside a trial to flood in. You know when someone says they have a new appreciation for life after a near death experience? I understand now. I never did before. I was always in the mindset that there was another option, that it isn’t my time. When I heard this news I let the idea creep in that this was it. I’m on a break from chemo for 4 weeks and a week in, my headaches and nausea have gonr away. I took a a flight of stairs that have previously been a challenge, and took every step to the top without stopping and losing my breath. I felt passionate about the possibility of planning for the future again. I feel like this time I have is me-time. I was granted it when I didn’t expect to have any.
I stopped taking the X&T combo right after my appointment. They need four weeks to flush it out of my system. I start my treatment Nov 27th and I’m elated to have a small break, and have a solid plan for when I get back at it.
The side affect of my new chemo isn’t nausea or hair loss. It’s extreme eye dryness. I can’t wear my contacts anymore, I doubt I can even wear eye makeup. I’m on the hunt for a perfect pair of glasses (or 5), before I start. I’m taking November to just enjoy my time / it’s my birthday so I’m planning on having MTL road trips, parties and lots of laughs with my family and best friends.
I didn’t realize how I let this drug rule my life. Beside the pressure I put on myself to take it, I also lost my sense of taste and smell. Little pleasures I always took for granted. Chocolate, red skittles, smelling the fall candles. The things that still keep me happy and give me quality of life, I wasn’t able to enjoy. Those should all come back anytime now. I never thought I would say I’m EXCITED for a new treatment, an IV chemo, but I am. I’ll take my eyeshadow pallette off the Christmas list gladly.
As for the mental battle, I don’t have an answer. It keeps haunting me and isn’t something I can get a grip on. It’s always there and here to stay, for now.
When I have more information, I’ll keep you updated.
xx
Sam
