12:05pm. Sunday, August 17th 2014.
How I’m feeling: Tired, still swollen all over, sick, weak – but hopeful. I am going to do tiny things today to make for a good day.
First off, to those whom have been following along through my journey – I can’t thank you enough. It means a whole lot to me. While I’m not always entirely sure what exactly you are getting out of tuning in – I just wanted to say “Thank you”.
This has been a really rough life chapter for me and it just got rougher. And I can just sense that those who took the time to keep up to date on the recent setback are really concerned.
The past week has been difficult and while my only focus has been to try to cope with this all, I have also been trying to figure out a way to express and communicate what’s been going on to others. I know you are all worried and the truth is that I am as well. 100Xs more than everyone else.
I’m scared. I’m nervous. I’m sad.
What’s the prognosis?
What’s the plan?
When will you be done treatment?
Will you be ok next week?
What’s going on?
Everyone including myself wants answers that neither I nor my team of doctors can provide at this point. Right now, it’s one big shrug of “I don’t know” and “We’ll have to see”
Certainty is something we seek comfort in. It’s something that we turn to for some peace of mind. I can sense that my friends and family want a glimmer of certainty to hold on to – but it’s just something I cannot provide.
The one thing I can be certain of is that I’m going to keep on documenting this one way or another – the dark, the happy, the hopeful, the triumphs. This is not something I want to forget even though I’m sure my body, mind and soul won’t allow me to do so. I’m also documenting this for all of you. The power of allowing myself to be really vulnerable through this all has changed my relationships (in positive ways) and so I intend on keeping it going 🙂
Many have come in to my life, have been filtered out and have shifted. I’ve said it before and I’ll say it again, life really does have its ways in shifting relationships around. Right now, I’m going through one big life crash course.
There are copious amounts of people who care about me. I know it. I can feel it, see it, read it and I still think about how overwhelming July 30th was to see many of you in person to show your support. It meant so much to me and I will never ever forget it. In a big way, it hurts to know that there was so much celebration and happiness around the #NGWLBFundraiser event – and now here I am – a step backwards. July 30th really signified the end of my hell-ish chemotherapy treatment plan – and the beginning of the next phase, radiation (the easy part relative to chemotherapy). I feel like this cancer took that celebration away and I’m so angry at it.
It’s taken me a week to get a word, a thought, a something on a piece of paper, video or audio recording because I have been processing what is happening to me. I’ve hit some really dark and scary moments.
Trying to process.
Still not processing?
My thoughts have been incoherent all week. In fact, I don’t even remember what I typed a line ago. Read back for me? Did any of what I typed make any sense?
On top of all of this, I have been really physically ill. Every inch of my body is either in pain or is uncomfortable with every slight movement. This has been the most ill I have felt since treatment started. They weren’t kidding when they said that this GDP chemo treatment would be a stronger and more aggressive recipe.
Eating has been difficult. I pretty much eat to be able to take down my medication – or to stop myself from feeling nauseous. Sometimes eating foods that are cooked make me feel uneasy. Right now, I’m snacking on celery sticks with almond butter on them. No real odor, no strong flavours, raw. It seems to be doing the job right now.
If I thought that first 6-cycle chemo treatment plan was tough – this one is definitely a good few notches up. Over the past months, there were times when I wanted to give up and I really didn’t know how long I’d be able to hang on – and here I am feeling like I’m clinging on for dear life. And so, in all honesty considering how this week has been, I’m not sure how I’m going to handle tomorrow. With my last chemo treatment, I had more time (21 days) to recover between each hit. This time, each hit is so strong that it has to be split up in 2 weeks. The 2nd hit of GDP chemo round 1 tomorrow makes me really nervous. I don’t know how much more I can take.
Especially after Friday’s appointment with my Oncologist, Stem Cell Transplant Team and Nurse – I’ve been really out of it. I feel like a F%$#ing zombie. In fact, I have caught myself unsure of what I’m doing as I’m doing it. Nothing radical – just little things. Over the past few days, I have found myself tuning out of conversations and having difficulty verbally expressing myself to others.
I’ve been spending all week trying to wrap my head around what’s going on with me. I’ve also decided to move back in to my Liberty Village home and give that a shot. At this point, I’m unsure if it’s a good idea or not. But, I wanted to try it out. I’m trying to take my time with the move but admittedly, it has been so difficult to be in my own place with boxes all around and not having the energy to get things settled. While I have had a ton of help from friends and family this week, I’m using this as an opportunity to learn to just “let things be” and be patient. Really, the only timeline I have to follow is the one I’ve set for myself. And the typical Carolyn would not give myself any wiggle room at all. Everything must be done immediately. Right now. Pronto.
Really, all I want to do is settle in and host. I want to get back to spoiling my friends silly with good food, wine, laughter and great company. One day soon 🙂
Right now, I’m putting extra emphasis on giving myself my own lesson of patience, only surrounding myself with happy and finding my “new normal”.
Speaking of my “new normal”, I received news from the Vascular Surgery team that I am even more limited with my physical activity for now. As most of you know by now, not being able to dance has already been heartbreaking for me. I’m trying to find a way to get back in to shape, while not compromising the compression I have against my main vessel. Really, what I’d love to do is sweat it out hard in the dance studio – but I’m going to have to take it slower for now. Let me know if you have any suggestions?
Wish me luck for tomorrow morning. I’ll need to borrow a whole lot of strength and positive vibes, please! I really do.
Still smiling and being a complete dork 😀 I couldn’t help it even if I wanted to.
Here’s my treatment schedule (for now) incase you’re curious:
Monday August 11th
Part 1 GDP Chemo cycle 1
Monday August 18th
Part 2 GDP Chemo cycle 1
Monday September 1st
Part 1 GDP Chemo cycle 2
Monday September 8th
Part 2 GDP Chemo cycle 2
Monday September 22nd
Part 1 GDP Chemo cycle 3
Monday September 29th
Part 2 GDP Chemo cycle 3
Tuesday September 30th to Sunday Oct 5th
Monday October 6th
Stem Cell Collection
Mid-October to Early-November
Admission in to PMH for Stem Cell Transplant <- The strongest hit of chemo. I’m so scared.
It all seems so far away 😦 I may need some mini-weekend vacations in between and definitely one right after I kick this thing’s ass. Any takers? Let’s do it!