My Regina FIlanges & other Discomforts

When I think of what to share on here, I often take conversations or questions from real life. 

A basic question is, "How are you feeling?" and I assume the person is being polite.

Surprisingly, though, I've found many people don't want me to answer briskly. For example me answering, "I'm okay...It changes every day," leads to a dip of the head, a narrowing of the eyes and then: "But are you like, sick all the time?"

At this point I imagine them picturing me ralphing all day - I mean, just vomiting violently all over the place. Projectiling all over the wall. My pale, sad, sweaty face with puke dribbling down my chin, etc.

So then I explain, "No, I'm not sick, really. Well, I mean sort of...some days I just feel achy, or off..."

And I sense they're struggling to understand what "sort of" and "off" means. So, I figured I'd outline some of what I'm going through here.

[Sidenote: I've hesitated posting this for a while because a) I'm a huge believer in jinxing, and by me pointing out what I'm not suffering from may cause me, like next week, to suffer from that very thing, and b) many people have worse or different reactions to Taxol (my type of chemo) and they may read this and be like, Yeah right, bitch, I'm dyin' over here! The thing is, I have 4 additional, still-to-come rounds of the rough stuff (AC) after surgery, so I'm far from done, and I'll probably be back on here saying that to my self. The last reason is at the very end of this post]

Anyway, what I learned fast is that everyone reacts differently and as frustrating as this sounds, you can predict nothing. I read a lot of books prior to my treatment. On the Internet I visited a lot of "online forums." There I would (and still) lay, late at night on my phone, my eyes blurry and beaded to slits, reading about some woman's calamitous! allergic reactions. Then I'd hop over to "Side Effects, Anyone Else Feeling Like They Are Dying a Slow, Painful Chemo Death?" -infinitely scrolling through 30 people's varying accounts of misery and woe.

I understand for some it's an outlet and a visceral need to relate to what others are going through, but some people post about really serious matters, to the point where I'm like, Um, ask your freaking doctor if there is fluid streaming out of your arm/leg/head? Why on God's earth are you soliciting medical advice from an online group of (albeit empathetic) strangers?! And why did I just spend 2 hours reading about it?

In a way, these forums prepared me for the worst, but in another way, it prepared me in no way shape or form, because as with life, some people are melodramatic and some people downplay too much. That leaves the rational people few and far between. (And probably not spending their days posting on online forums.)

Here goes, for me, the ugly stuff (but ultimately, ugly stuff I've been able to deal with).

• A neat little side effect of Taxol is peripheral neuropathy. I'm not into explaining the science but basically your fingers, toes, and even ankles can go numb or feel like pins-and-needles. Your Regina Phalanges can go so numb you can't button a button. So far for me, it hasn't meant full-on numbness, but it has meant a couple papery finger tips. I've taken Vitamin B Complex supplements at the suggestion of my nurse, plus I think exercising has helped stave it off. The weak ankle thing could explain me tumbling into a heap on a run the other week, or maybe not, because I have been the Queen of Rolling my Weakling Ankle for several years, from my clodhopping Mary Janes in middle school to adulthood, on jogs in Southie where I'd trip on a garbage can right in front the Beer Garden's open front windows. Anywho, it's been three weeks and it's still a cankle. My body doesn't heal properly, so even cuts and bruises overstay their welcome.
• Bloody, dry nose. Because the air is dry and hair loss happens everywhere, even your nose, without that barrier I'm often unsure if a liquid snot rocket is snaking down my nostril, or if it is a stream of blood. Coating my schnoz with Aquifor on a Q-tip helps with the dryness. It's awkward in meetings when I feel moisture and have to spring up to go to bathroom to make sure I'm not dripping blood on my boss's new chair. I work at a furniture company. Those are nice chairs.
• Adult Acne. Week 2 I had a full face of it, pustules and boils combined with a rash. Painful and disgusting. I touched it lightly and it would bleed! That's enough to make you heave probably, sorry. Thankfully my lovely nurse prescribed me rash and acne meds and it quickly cleared up.
• Mouth sores. They're just little canker sores; they don't look as bad as they sound, but they are painful and get in the way of eating. And this I do not like. Especially when my dulled taste buds finally return to normal and I want to eat pizza to celebrate, but I can't because the sores flare up over anything hot (heat and spice-wise). There is something that exists called magic mouthwash, which is basically a milder form of Novocaine in a bottle, which works, but what's the freaking point when you still can't taste anything...

That's just a little handful; there have been more, like slight fevers and chills and hot flashes at night (thank God for Ativan to get me back to sleep and ease my nightly worries), but as you can see I'm not crawling on my elbows to the toilet. Every week brings a different range of mild to abject forms of discomfort. Thankfully, not yet pain, or full-blown lasting fatigue. (Ugh, I'm so afraid of jinxing. Not yet, not yet, not yet. If this blog had a praying-hands emoji I could use, I would. [Insert here!])

Shoutout to My Mom
Lastly, this is off topic, but while I've been doing relatively well, I'd like to make a bit of clarion call for my mom, who has had a rough go of things lately. She'll hate that I am doing this but for any prayers and thoughts headed my way, if you could divert some right now to my mom, that would be most appreciated. She's been going through this much longer than I have, she's suffered through every drug known to man, and she is one tough broad, but it's been a long road. Thank you.