4:00pm. Tuesday March 17th 2015.
How I’m feeling: Reluctant to be sitting down to write this one out – but I know better. I know I have to. Things have been rough over the past little bit. Admittedly, I’ve just been keep busy and allowing it be buried. I’ve been dodging all of this. But I am better than this. I know myself. I’m much smarter than this. I need to stare this dead straight in the eye, walk towards it and deal with it head on. In my opinion and from my experience, it’s the healthiest way to go about things. Trust me. Be courageous, be vulnerable, purge, deal with your s%$#. You’ll require a lot of strength – but in the long-run, you’ll be in a much better place.
It’s been over a month since I’ve been back on a high dose of prednisone (steroids) a long with a couple of other meds to help deal with the side effects from the prednisone. I’d have to say that I’ve been feeling really terrible. I’m constantly uncomfortable – but I try to keep reminding myself that I have been MUCH more uncomfortable over the past year and have found ways to fight through it. In fact, the other day I took a quick peek at some of the photos from of my darkest and roughest moments throughout all of this – and it helped put things in to perspective. I can do this. I’d rather experience this discomfort over not being able to breathe. I am alive. I’m telling you, going through this has made me feel pretty damn invincible. But I do need the reminder ever so often. I’m allowed to feel sad, in pain, angry, frustrated and upset. In fact, it’s important that I don’t deprive myself of these feelings – it’s part of the process and will amount to a better outcome in the end. The good stuff is all in the process of bouncing back. As my friend Karen shared with me the other day:
“Resiliency isn’t always being positive. It’s about hitting those lows and finding your way back to positivity”
This was an observation she had made from working with the Red Cross and watching people recover from disasters. It’s something I can certainly relate to with my personal disaster and journey through this all.
Last Thursday, I went in for a CT scan to assess the status of the inflammation around my lung. Admittedly, I was nervous for the scan. Mostly because it had been a while since I had done a CT scan – even though once upon a time I did them so frequently and so I can probably just do them in my sleep now. The less fun part about them is the downing a slurpee-sized cup of barium, the multiple attempts at trying to get an IV in me and the contrast dye that flows through your veins. As you know (if you’ve been following along) – my chemo-veins have been ridiculous. So ridiculous that it’s kind of comedic. For me at least. Most of the time, you just have to laugh things off, right? To my surprise, I didn’t have to do ANY of that for this CT scan. It was a quick one that didn’t require any of the above. Wee! After my scan, I had an appointment with my radiation oncologist, Dr. H.
I found out that Dr. H wasn’t in – but one of his colleagues saw me instead. He told me that based on my scan results, things were looking better, but they are not perfect. Which meant that I still had to stay on the steroids. I was bummed. I was really hoping to hear something more along the lines of “Things are looking so great, Carolyn! We can have you stop taking those god awful steroids now! Hooraaaaay!” Instead, he informed me that he will have to slowly reduce my dosage to wean me off of them – as there have been cases where patients go off of it cold turkey and not so good things have happened. Such as the inflammation quickly coming back and not being able to breathe. Not so good. So, while I so badly want to just flush these pills down the toilet, I have to comply to a dosage schedule that was created for me until my scan results look better.
There was something else I wanted to bring up to the oncologist. It had been bugging me over the past couple of weeks. My body temperature had been so warm. The last time, this had happened – it was due to the radiation therapy. Inside, my chest always felt hot and when I would inhale, the breath would feel warm. Even the chest area where I was radiated on was hot to the touch. However, over the past 2 weeks I had been experiencing something slightly different: sweating profusely – but when I’m not even being the slightest bit active. For instance, I would be sitting down having a glass of lemon water with a friend and ever so often, I’d heat up, break out in to a serious sweat that would last for a few minutes and then my body temperature would go back to normal. Really uncomfortable – and kind of embarrassing. Just really…confusing. But I figured it was just one of the laundry list of side effects from all of the meds I’m on. Over the past year, my body has been experiencing many odd things from everything I’ve been going through – including all of the medication I’ve been on. So, this was just another one to add on to the pile. I mentioned this to the doctor and after he referred to my records he said “So, you had the high dose chemo and stem cell transplant October 2014, yes?” I confirmed, yes. “What you are highly likely experiencing are your ovaries on their way out. The medication you are currently on wouldn’t give you those side effects. It’s the chemotherapy from last year that’s making it way through you” At first I didn’t understand – but then he proceeded to discuss infertility. Got it, the sweaty episodes have been hot flashes. As in…I’m going through menopause. I’m a menopausal 29 year old. I can say that I’ve experienced this before the age of 30 – on top of relentlessly fighting cancer.
So, it’s happening. It’s actually happening. I knew that a probable side effect from all of the chemo last year was going to make me infertile. And then the high dose chemo in preparation for stem cell transplant was pretty much guaranteed to make me infertile. I even had to sign paperwork indicating that it was going to happen. Remember when I did that?
But…it’s happening. It’s really happening? I don’t even know what to say….
I’m just…really hurt. And angry. And feeling helpless. And sometimes I feel damaged. I know, a terrible thing to say. Something that probably isn’t the easiest for you to read.
I wasn’t planning on having children any time soon – but this kind of forces me to think about when I do want to have children. And yes, I absolutely do indeed want children! I’m not quite sure if I’m ready to think about all of the options. I know they are there – but I don’t know if I can wrap my head around them right now. Plus, I know that I should be focusing on my primary battle – fighting off this lymphoma cancer but just when I’ve had a moment to forget that my ovaries are on their way out, I start to profusely sweat. “Ah yes, I’m going through THAT. F$&#.” A dance mate recently shared with me her personal story of her miracle baby son. It was a story I really needed to hear. I believe in miraculous things happening and I needed the reminder. Thanks so much, Mel!
Something else that has been really difficult to cope with is all of this water retention. I’ve gained 12 lbs of it and I feel like most of it in my face – my face is so puffy. Water retention is a common side effect from prednisone. Last week, I met a cancer patient who has been on a high dose of prednisone for almost a year and gained 80 lbs from it! Crazy. I’ve been trying to fill my diet up with foods that help reduce water retention. I’ve been drinking dandelion tea like crazy. And I just grabbed nettle leaves, fennel tea and more chia seeds today. Apparently those help as well.
Dance has been really rough with these side effects. As most of you know, after a year hiatus I started training again with my Army Of Sass dance crew. I’m crazy hot through rehearsals – between the wig, the hot flashes and the sweating it out we do in rehearsals, things are really uncomfortable.
BUT at least I can breathe.
At least I can do many things. Over the past couple of weeks, I have definitely had moments throughout recovering through this radiation pneumonitis feeling overwhelmed with gratefulness for being able to do simple things that weren’t so simple just a few weeks ago. A couple of weeks ago, I was at St. Lawrence Market – and I decided to walk home (I live in Liberty Village). Just weeks before this, I was literally not able to walk more than 7 steps without chest pains and shortness of breath – and that got me sent to the ER. I started tearing up because I felt overwhelmed with gratefulness and joy. Every single day when I’m in the shower, I take a moment to remind myself that under a year ago – I was not even able to shower myself. There have been incidences when I had been so weak or had tubes attached to me that I needed help from friends and family to shower. Every single time I walk up my stairs in my home, I pause at the very top for a moment and remind myself that just weeks ago, I had to sit on the edge of my bed to catch my breath after doing so before doing any thing else.
The other day, I bought a shaving razor for the first time in over a year. This means, my hair is growing back. The little bit of hair on my legs makes me SO happy. I can’t wait to shave my legs this week!
If you’re in Toronto on the 20th or 26th, I’d love your support as I perform in my first debut performance since I was diagnosed and took a leave from many aspects of my life – dance included. It hasn’t been an easy transition back at all – mentally, emotionally and physically but I’m doing it. The show is called Fifty Shades Of Grey. Show info below:
Show dates: Friday, March 20th and Thursday, March 26th
Doors open at 9pm
Showtime is at 10pm
Venue: Virgin Mobile Mod Club (722 College Street)
It’s going to be another sold out production. Tickets are $20 and can be purchased directly from me 🙂 Let me know which show you can make it out to!
My Army Of Sass dance family means a lot to me. They were the main group who put their blood, sweat and tears in to the No Good Woman Left Behind fundraiser: http://nogoodwomanleftbehind.com/ in my honour in July 2014. I’m slowly but surely picking up pieces of myself and trying to figure things out. It’s really scary – but it feels good. It’s nice to be able to start to reclaim something that did so much for me from a physical, emotional and mental standpoint. Dance is my meditation.
Have you seen this yet?
It made it’s way through the interwebs a while ago – and wow, I can relate to it so much like you wouldn’t believe.