A Passage On The Passage Of Time

That elusive element that seems to be slipping through my hands like sand

A blank white screen has always been my enemy when I’m trying to write. When I was younger, I’d find the blank screen so intimidating that I would end up writing with pen and paper instead, at least initially. With school papers, I would end up ignoring most of what I’d written by hand, but something about the process of putting “pen to paper” would just get my creative juices flowing. Ironically, pen and paper somehow seemed more forgiving than typing on a computer even with a computer’s ability to completely delete a word or sentence, unlike a line through them on paper. Or perhaps it was the fact that I could doodle on the paper that helped? To be frank, I “doodle” the same exact things every time (remember, my sister inherited the arts genes, not me), but perhaps making the page imperfect made me feel that my writing also didn’t have to be perfect, unlike a pristine blank white screen.

In the end, I suppose I’m hardly alone in that feeling of being overwhelmed when it comes to writing! I’ll admit that I’ve been procrastinating on posting to the blog. In fact, I’ve had a post on my mind for several weeks now. And yet, every time I opened a computer to start, I’d let myself get distracted with the thought that I can always write an update later because there were other things going on or because I couldn’t find the words that I wanted. So here we are, more than a month after the last post, with still no updates to the blog. And that’s the other thing – where does the time go? I know that I Rip Van Winkle my way through some weeks due to chemo side effects, but I’m still not entirely certain where the last 5.5 months of treatment have gone. I keep joking with my family that chemo brain must be such a strong side effect so that it’s difficult to remember everything that happens to you with cancer treatment, but I’m now starting to wonder if my joke is in fact the truth! What I lack in frequency though, I’m making up in length. I hope you enjoy a longer post from me, the latter half of which is NOT focused on cancer for those who want to skip ahead!

The last month and the next

Since we last “spoke” I’ve had another couple of infusions with all the requisite side effects (for those counting, I’ve had a total of three AC infusions to date). To be honest, I’m a little tired (pun intended) of always talking about side effects. I’m already living it and rehashing it in writing is a little bit like going through it again. Having said that, I am committed to giving at least something of a realistic view into this world, so here goes.

Overall, the first two infusions of AC were different than I had expected, but more importantly, were not as scary as I’d anticipated. Before the first AC infusion, I couldn’t fathom a world in which I would be even worse off than I’d been in February with the previous combination of drugs. I didn’t think I’d make it through if it got as bad as February, much less worse than that. I’d exhausted my supply of strength and energy by that point.

When I would be alone in my room, the mere thought of three more months of chemo would break me down into tears. Those who know me well know that I’m not particularly emotional and certainly not prone to tears or meltdowns. These last months of suddenly having lots of emotions and having them so close to the surface has required a steep learning curve to manage them.

In the end, the physical side effects have ranged from a lack of energy, bad nausea, a major uptick in my acid reflux, dizziness, hot flashes galore, a pounding heart, and more. If you can imagine, I had pictured something even worse. Additionally, as I mentioned in the previous post, I had a recurrence of the skin lesions after the first infusion. In a bid to prevent new skin lesions from forming after the second infusion, my doctor prescribed oral steroids. While the oral steroids appeared to work, I also reacted negatively to the steroids (go figure). I felt unsteady and weak for several days. After nearly fainting while taking a shower (I had to abruptly sit down and turn off the water to avoid doing so) and throwing up from the steroids, I spoke to my care team who concurred that I should stop taking them.

The third infusion of AC was accompanied by the same side effects just even more intensified, the addition of muscle aches (imagine a mild form of the flu), and me being down and out for over a week. While the previous two infusions had impacted my energy, I was still somewhat able to do basic things throughout the day (and by basic, I really mean I was able to stay awake for more than an hour at a time). After my third infusion, however, I spent the following 1.5 weeks waking up to eat something only to then fall back asleep on the couch or in my bed. The nausea was an ever-present companion for nearly two weeks and there were definitely meals that went out the way they came in.

Now that I’m two weeks out from my last infusion, I’m finally starting to feel somewhat like myself. More importantly my next infusion, scheduled for 5/16/2018, is also my last chemo infusion for now. In case you missed that, let me repeat, after six months of this shit, MY NEXT CHEMO INFUSION IS MY LAST! I hope that my excitement is palpable!

But because I’m me (a friend nicknamed me “practical Reema” a long time ago), I’m also going to burst that bubble of excitement a little bit. I hate admitting that I’m having mixed emotions about reaching this point in my treatment. To be clear, I’m unequivocally excited to be done with chemo. But I’m also equally frustrated that I’m only 1/3 of the way through treatment. Honestly, I just want my normal life back already.

That last statement has been a litany in my head for the past month. It’s also a statement that, when I actively think about it, is guaranteed to bring on the waterworks. I therefore try not to think about that too much, but it’s hard to control every wayward thought in your brain as you can imagine. I also think my brain has finally gotten used to the whole process of chemo. It has stopped being an unknown and has simply become routine. A pretty god-awful routine, but a routine nonetheless. When chemo is completed, I must move on to the next treatment step. It means that I’m again thrust into a position of uncertainty and one where I have LOTS of questions. If I try to organize them or group them, I end up with:

Surgery related or tangential

When will my mastectomy occur? How will I heal physically from the surgery? How will I do with the loss of a part of my body emotionally? Will I have a pathological complete response (pCR) to the chemo? What can I do to try to prevent the development of lymphedema? Should I be thinking about eventually getting the second breast removed as a preventative measure? What about a foob (fake boob)? Where do I get one? How do I match sizing? Will it fit comfortably in a bra or will I constantly be worried about it moving around? Do I get an official prosthesis or do I bide my time with a knitted and weighted foob? How quickly can I regain my full range of motion post-surgery? Will I be able to lift heavy weights without concern? I don’t currently plan to do reconstruction (I can’t do it immediately anyway), but do I reduce the other breast? When do I get that done? What if I do end up wanting reconstruction down the road?

Moving on from chemo

How quickly can I stop taking all these damn medications that I’m taking due to the side effects from chemo? I’ve been experiencing lots of hot flashes as a side effect of AC – does that mean I’ve entered early menopause or will my periods come back? If they come back, how quickly will they come? How long will it take me to recover from ALL the side effects? Will the chemo brain effect ever dissipate? When will I have the energy that I used to have? Will there be a long-term impact to my heart from the AC chemo? When will my hair start to grow back? How quickly will all the scars and spots on my body clear up? If I don’t have pCR, will they give me more chemo?

Radiation related

What will radiation be like? Will I tolerate it well? Am I about to again have debilitating fatigue from the radiation? Will I experience the skin burns that so many others do with radiation? What will my schedule look like with twice daily radiation? How noticeable or ugly will the radiation tattoo be?

If you can believe it, I still have even more questions beyond those listed above. For those wondering, the answer to your question is, yes, it’s no fun to be in my head. I do of course try to distract myself and not wonder so much, but I’ve always been very curious and a little bit of a dreamer (I know, it’s a dangerous combination). In fact, I’m rarely aware of the fact that my brain is actively churning away in the background. As with all things throughout this journey, I simply have to bide my time and see what happens. Speaking of time, I’d like to switch gears a little.

Marking the passage of time

One of the so-called joys of chemo is that I have scars and spots all over my body. There are the marks on my breasts from my many diagnostic biopsies, the hyperpigmented spots on my face, neck, arms, hands, stomach, butt, legs, feet (so my whole body) that identify the areas where I had skin lesions from the first set of chemo drugs, the smaller spots all over from the Panitumumab rash, the new hyperpigmented spots from AC (discernable only in that they are lighter in color than the others), the scars on my right forearm from my last ER trip, and more. While I’ve never been very particular about my appearance, I will say that I am much more conscious these days. Most of the scars and spots I’ve mentioned should eventually fade with time (or so I hope), but they also serve as a reminder of how far I’ve come.

Perhaps the “spots” that have amused me the most are my nails and toenails. In fact, I noticed the other day that I could very clearly identify the sections of my chemotherapies from my nails. Much like rings on a tree, the nails on my thumbs show the passing of time and the impact of these chemotherapies. Don’t believe me? Take a look at the picture below (it’s not the best representation of my photography skills but it’ll do)!

Also, just to clarify, discolored nails and (annoyingly) the temporary loss of entire nails is a known side effect of several of the chemo drugs I’ve received. The area near and under my nails hurt every day, all day. It’s a dull ache but a constant companion. Also, when you are in the process of losing your nails, they slowly start to lift away, creating exaggerated white areas, similar to what you see at the tip of your nails, just further down the nail bed. More frustrating is the fact that the lifted nails catch on EVERYTHING and it’s quite painful because they want to rip off.

Between the lingering effects of peripheral neuropathy and the lifting of my nails, simple everyday tasks become difficult whether it’s washing dishes, opening a can of soda, or something as innocuous as picking up my purse. My nails catch on things in the most unexpected moments, and each time they catch on something, it makes it easier for them to catch again the next time because it pulls my nail that much further from my skin. Thankfully, I’m with my parents who basically refuse to allow me to do anything. But even with that level of support, it’s impossible to prevent every scenario in which my nails can catch. On a lighter note, I will say that it’s going to suck when I have to do everything myself (but I seriously can’t wait to be self-sufficient again)!

The markings on my nails got me thinking about the passage of time. In fact, I found myself randomly browsing through my baby album and the album that include pictures of my first trip abroad (to London, the Netherlands, and India) at the tender age of four. This then led me down the rabbit hole of digging through an entire plastic bin full of all our family pictures that never quite made it into an album. It ended up being a wonderful trip down memory lane but also provided unexpected moments of self-awareness. I thought I’d share a couple of those moments here if for no other reason than to make a little fun of myself.

Who wants a “normal” picture anyway?

For as long as I can remember, I’ve always hated having my picture taken. To this day, when I’m traveling alone and people generously offer to take my picture for me, I always decline (and no, that’s not because I’m taking a selfie). The irony of all this is that I actually love taking pictures, just not being in them.

Over time, my aversion to being in pictures in general has decreased, but I still strongly prefer to have my picture taken with others in the frame rather than alone. I never really knew where this aversion came from, but as pictures would reveal, it seems to be something I was simply born with.

Take exhibit A. I love to tease my sister that there’s a 50% chance that I’m terrified of being in her arms (notice the size of my eyes and the lifted right hand as if to say "the horror!"). The other 50% chance is clearly that I intensely disliked having my photo taken, even as an infant.

As you can see in the two pictures below, I often refused to take a “normal” shot.

Unfortunately for me, my theory of being terrified to be in my sister’s arms doesn’t hold weight if you look through more pictures. While I might still have made a funny face with her in the frame, there was a greater chance of me acting “normal” when she was with me.

I’d say this last picture of the two of us pretty much sums up my sister’s frustration with me in life, much less when we take pictures together. If there was ever any doubt about why I named the blog "A Dash of Sass", I hope this clears it up!

The concept of well-fitted is still lost on me

I’ve never been particularly attentive to my appearance. I am a “jeans and t-shirt” kind of girl through and through. To my parents’ credit, they rarely spoke about norms around how a girl or woman was expected to dress when I was young and instead emphasized being neat and presentable. Any comments on my appearance throughout the years tended to be focused on my weight, and that was simply from a place of concern about my health rather than societal norms of how a woman should appear.

Dressing in a “feminine” manner, wearing makeup, etc. were all things I figured out when it was right for me. To this day though, I’m most comfortable in my self-designated uniform of jeans and a t-shirt. Perhaps the most distinguishing factor of my so-called uniform is the size of the t-shirts I tend to wear. Given the choice, I will always wear an excessively large t-shirt – one that can likely double as a dress. In fact, I’m sitting here typing in one right now.

And it would appear that my penchant for wearing these dress like t-shirts was born early. I still remember this yellow shirt that my father got from his office. It was super soft and comfortable, though I must admit that I have no idea what happened to it in the end.

Even into my teens, I’d wear these large t-shirts anytime I was required to be in public (it seems that messy hair is also a hallmark for me).

I’ll fully admit to the fact that I’ve only recently switched the t-shirt part of my uniform when I need to go in public only because the flow of free super-sized t-shirts seems to have waned. Instead, the dress-like shirts I wear at home these days are ones that I found while living in the Netherlands. To be fully transparent, I had gone into a lingerie shop initially attracted by some of the pretty underclothes they had on display. But then, I stumbled across the display of oversized shirts as sleepwear. You should have seen me beeline my way to that display in the shop. I was a goner. Before leaving the Netherlands, I went back to the shop and stocked up on their shirts. In all seriousness, I genuinely never, ever want to be without one.

Everything really does come full circle

Speaking of the Netherlands, I couldn’t help but pay special attention to the pictures I came across from my first trip abroad in 1990, which included some time in the Netherlands.

If you look closely at the picture here, you’ll see that we’re at the airport in Amsterdam with the old entrance to the Schiphol Railway Station behind us.

While I’ve seen this picture before, I had never paid it much attention since you couldn’t see the foreground clearly. But this time it caught my eye because of the amount of time I had spent in the Netherlands (and the number of times I’d flown in and out of Schiphol). I must say that I find it fitting that I ended up spending so much time in a country that was part of the trip that kickstarted my lifelong love of travel.

Speaking of travel, I’m going to leave this post here. But before I sign off, I want to make a commitment to sharing some pictures from my time abroad on the blog. I’m giving this public commitment for two reasons. The first reason is that as much as I love taking pictures, I’m not so good about editing them. I have a few years’ worth of backlog that I need to get through and am looking for extra motivation, which I’m hoping the blog will give me. The second reason is that studies have shown that people are much more likely to follow through on something if they’ve committed to it publicly. I’m hoping that I’m like the people who were in these studies, so I’m going to try and see if making my intention public helps push me to edit some of my backlog. Wish me luck (and/or bug me if I fail to share anything)!