10:10pm. Sunday September 28th.
How I’m feeling: Smiling from a great week and weekend – even though what you’re about to read/watch/listen happened.
The Friday before each chemo cycle, I’m scheduled to see my treatment team. It starts with blood work and (hopefully) ends with a thumbs up “We’re all set for Monday’s session” Well, it’s not that simple. Especially lately, this hasn’t been the case. There has been a lot of “new-ness”. Although it’s always been new since day one. Last time, I was admitted in to the hospital for my super low white blood cells and platelet count, suffered from painful infections – and my treatment plan was pushed back as a result. And this visit – well, was a really tough one. A REALLY tough one.
It started off with the usual. Blood work. This time around, it took two tries to find a good vein. After that, I headed up to the hematology clinic for my appointment with Dr. K and team. The usual happened – hours of waiting, I get called in, am assigned a room – and then one by one each team member comes in to visit asks me a slew of questions and drops a bunch of information on me.
It started off with the results from the CT scan I had done on Tuesday. Overall, things are looking good. There is still more work to be done – but things are looking up. And that’s what matters, right? Hooooray!!!
And then I end up spending quite some time with my stem cell transplant nurse, Denise. I had sent her questions earlier on in the week re: scheduling and requesting a more thorough breakdown of the process. Also, I was looking to know if I could make it to some special set in stone dates I have coming up – and would be able to escape on a mini trip before I’m admitted in to the hospital for the transplant. I need out for a bit but am having trouble finding even 3 consecutive days where I’m appointment/treatment-free or not in the thick of treatment recovery.
It was the first time really discussing all of the details of what the stem cell collection and transplant process would be like – and how being admitted at PMH will look like. It was all very overwhelming.
Stem cell collection week is October 13th. This should take a day up to a few days. And it’s an outpatient procedure. So, no moving in to PMH – just yet.
I will then need to get Hickman line put in. I’m SO nervous to have this done. It’s a central venous catheter that will be used for both blood withdrawal and for the stem cell transplant – as well as any other medications I will be receiving that would normally be administered through an IV. My veins are pretty much donzo and especially now, I cannot afford to get another infection from all of the poking. That said, the Hickman line needs to happen. About a week later, I will be admitted in to PMH for the transplant.
The transplant process starts off with the one dose high intensity chemotherapy – which should take 2 days. I learned that the chemo cocktail I will be getting is going to be 5Xs stronger than the chemotherapy I’m getting now. Honestly, I don’t know how much more I can take. Although, I also felt this way throughout and after the first set of chemo – and the chemo I’m getting now is a few notches stronger and more aggressive. I suppose I am stronger than I know. We all are – I know it.
After the high dose chemo, I will be getting saline hydration for a couple of days and I’ll puff up from it – temporarily. I’ll pretty much pee it all out within that week (TMI? Who am I kidding? I think I may have crossed that line a long time ago in my blog posts). I’m so sick of all of this puffiness and swelling. I’ve been swollen from my elbows up since March – and it’s frustrating. I miss my collarbones, my shoulders, my jawline, my cheekbones, etc. Also, after each chemo cycle the steroid medication I am on puffs me up even more. I have to try to keep on reminding myself that it’s temporary.
And then it’s time for the stem cell transplant – which should take a couple of days.
And so, in total the process itself should take about a week. However, I need to be admitted for 2 to 3 weeks due to the slew of side effects I will be experiencing. I will need to be monitored very closely.
The laundry list of side effects is really overwhelming. I saw it in print – and had to sign off on it. That was really tough to do. I suppose putting my signature on the dotted line, underneath the list of all of these terrible, painful and uncomfortable things that will be happening to me felt like I was agreeing with it all. That I was “OK” with it. It’s as if I was telling Denise “I’m ready”. The truth is – I’m not ready. Not at all. I cried as I signed those papers. I thought “this is not fair”. I felt fear. I feel fear. I’m terrified.
As we went through the side effects, I noticed that some of them were ones I had already been experiencing from the past and current chemo treatments – and so I asked Denise. “Denise, with my previous and current chemo treatment – some of those side effects seems to be the same as these ones. So, I’ll be ok – right? I’ve experienced most of these already” She replied “Well, this is 5Xs stronger. It’s going to be tough(er). It’s MUCH more aggressive. And so, the likelihood of you experiencing these side effects will be significantly higher” We continued to speak about them one by one in detail – and one in particular really hit me hard. I’ve decided that at this point, I’m not ready to share with the entire world what this is via this post (I likely will in the future), but so far I have shared with a handful of you what is really worrying me.
What I will tell you is that the side effects that were listed ranged from nausea all the way to death. Yes, death. I did however learn that there’s a lower risk of death with lymphoma cancer.
Right after I signed 3 sets of papers, I had to rush on over to Mount Sinai Hospital (next door from PMH) for a heart scan. The entire way there, I was fumbling. I felt panicked and in shock. As I had to provide Mount Sinai staff with my health card and PMH card, I noticed that my hands were trembling. I dropped my phone and my wallet a bunch of times as I wandered through the hospital looking for the scan room. I was a f%$#ing mess.
I finally found the room, signed in – and took a seat in the waiting room. I immediately started to text those whom I had the most recent text message conversations with – not coincidently the few important people that have really been right by my side on a regular basis throughout all of this:
And while I did this, I started crying. I could feel everyone watching me. And normally, I wouldn’t give a $#!% at all. After all, I’ve allowed plenty to see me in a vulnerable state – including every single person who is following along through this blog. But in this very moment, I needed to be alone. I had just been dropped a whole bunch of information: appointment dates, procedure details, side effects, etc – and while I was trying to process all of this, I was about to get a scan done of which I had no idea what was going to be like (by the way, it included more vein finding needles. It took 5 tries – that’s 7 times in total this day).
It was just a lot to try to comprehend and handle. And so, I found the closest private washroom – and hit the record button on my phone.
Right now, at this very moment – I’m doing ok. While there are a bunch of things that concern me and I am very much so nervous and scared for this whole transplant process, I’m ready to move forward on whatever it’s going to take to kill this cancer off. Well, “ready” may not be the right word. I’m not ready to experience what I’m about to experience. I haven’t been “ready” this entire time. But what I AM ready for is to kick this F$#@ing cancer’s ass. I’m ready to move closer towards the end result from all of this.
If I waited to be “ready”- nothing would ever get done. There would have been be no (or VERY little) progression and growth within me and every aspect in my life: relationships, professional development, personal development, etc. And I therefore would not be as happy and fulfilled as I am.
Wish me luck for tomorrow. I have another long day up ahead starting with a lung test at Toronto General Hospital, followed by chemotherapy at PMH and then some blood collection (12 vials. Eep!) It’s a 730am start and I likely won’t be done until the evening.