Well hello world!

An undesired reality check and a (belated) moment of transparency

I'm sorry. Let's start with that as I believe apologies are in order - one for my long absence and another for an unintentionally broken promise that I made to you at the start of this journey. I also have no overarching theme or cute story for this post. In fact, it may come across as more stream of consciousness than cohesive thought. Unfortunately my energy levels don't allow for much more, so I guess all I'll say is that I hope you enjoy a peek into my muddled thoughts!

A broken promise

Since I like to keep things interesting (or so I tell myself), let's start with the second apology, first. When I started this blog, I made a promise to myself and to you to be honest and transparent. I was determined to do so as I wanted to give an honest glimpse into the process of fighting cancer and to help demystify it if at all possible. In the meantime, I ended up sharing the news of my diagnosis on Facebook on January 8th in a bid to draw awareness to the idea of listening to our bodies. Doing so triggered me to reread all of the blog posts I had put up so far and doing so was...insightful.

Looking back, I realized that I was, if not intentionally dishonest, then at least partially obscure. Every post I've written has been optimistic. And while I do strive to remain positive on a daily basis, that is hardly an honest picture of reality. I've glossed over the fear of the unknown, pasted a smile over some very real tears, and in general tried to make this blog not super depressing. In doing so, I've made it seem that this journey is not nearly as difficult as it actually is. And I've prevented you from truly joining in on this journey (I'm assuming that's why you're reading my blog anyway).

After sharing my news on Facebook, I was told that I was brave more times than I care to count. While I'm very much a walking stereotype in that I can't accept a compliment, this one in particular didn't sit well with me. Not only did I not feel particularly brave (I've literally got no choice but to go through this battle if I want to live), but I also felt a little dishonest (I was unintentionally hiding how hard this battle is).

So here's my apology for that. I'm sorry. I made you a promise that I failed to keep. But that will change going forward. My posts may not be frequent due to my energy levels, but whatever I do share will be transparent.

Chemo Side Effects...Part Deux

In my last post, I expressed a hope to continue on in the same vein as I was in terms of side effects and being able to handle them. Sadly the fates were not so kind. I also honestly feel like such a baby whining about these things. Despite my significantly worsened condition, I know that I still have it so much better than so many other patients. Many of you will tell me to cut myself some slack, but I've always been my own harshest critic. Knowing that I'm letting something knock me down when others appear to either handle it with more grace or have it worse than me makes me question my own strength. In any case, here goes the latest update on that front...

For me, the worst side effect is still the fatigue. I cannot explain what a strange sensation it is to have just enough energy to be awake but not enough to actually do anything (productive or otherwise). I've always been an avid reader and yet I can't summon the energy to read a page or two, much less pick up the damn book to begin with. Friends have kindly sent coloring books and puzzle books and journals which help organize your thoughts, none of which I've had the energy to touch.

Additionally and rather ironically, it's energy that you need to remain positive too. The moments that I've cried and doubted if I have the strength to make it through this have always happened when my energy is down. They've also typically happened when I'm trying to summon the strength and energy to take a shower (who knew just how much energy is needed for something so seemingly simple?). This also explains my long absence from the blog. It's not that I haven't thought of writing an update. I just didn't know what to say nor did I have the energy to write it (for which I apologize). I also have wonderful friends who came to visit (or are coming the weeks to come) and to whom I've dedicated my available energy. I'm sure you can understand!

The acid reflux also got so bad that I couldn't find anything to eat and it was actually causing nausea and vomiting. I've since started taking Nexium which has helped a fair bit, though it's not a perfect solution. Unfortunately, the acid reflux (we believe) is also impacting my vocal cords. I wish I could say that I sound sexy a la Phoebe's cold in Friends (Smelly Cat anyone?), but I just sound like someone with a really hoarse voice. Additionally, the chemo has started severely impacting my sense of taste. Strangely enough, savory foods taste like absolutely nothing while sweet foods taste mostly the same. While I've always been a dessert person, this isn't exactly the excuse I was looking for to eat endless amounts of sugar (nor do I actually crave anything sweet at the moment). My appetite is therefore severely decreased and pretty much nothing sounds appealing.

I've started to develop peripheral neuropathy in my fingertips, which includes a numbing/tingling sensation. I'm dizzy on standing and short of breath from simple activities like walking around the house. The antibiotic I was given to control the rash that developed from one of the chemo drugs appears to have caused a counter effect called a "fixed drug reaction". This results in painful lesions that have a strong burning sensation which have developed all over my body. The severely dry skin that I already had doesn't help matters. My eyesight is impacted too with a regular sensation of burning and watering which also impacts my desire to actually do anything that requires my eyesight.

There are other side effects that I'm forgetting at the moment. Oh actually, that is one of the side effects! Ever heard of chemo brain? It's a real thing. I regularly forget important information. While I've always been forgetful, this is a whole different level of forgetfulness that I've never experienced. I can only imagine what will come next.

The thing that helps me best manage all of the craziness above is sleep. I regularly sleep 12-13 hours and rest most of the time that I'm awake. It's easier to manage the pain from the skin lesions if I'm limiting movement and besides, what do I need to do in any given day besides make it through?

What comes next?

On a potentially positive note (I can't seem to help myself! I always want to find the silver lining), I'm nearing the halfway point in terms of chemo. This Wednesday, 2/14 (the fates sure have a sense of humor), I will receive a dose of Panitumumab and Taxol and next week 2/21, I will receive my last dose of Taxol. On 2/28 I switch to AC or "red devil" for the next three months. In all honesty, I'm scared for AC. Everything I've read or heard about it leads me to believe it's an incredibly tough drug. All I can do is hope that I'm proven wrong though I'm anticipating the worst.