(I actually started this post last week, but kept getting sidetracked from finishing. Now, I’m posting this before it isn’t relevant anymore! So, the list of side effects below isn’t entirely complete, but I’m probably the only one who is super concerned about that.)

It has been over a month since chemotherapy ended for me and surgery is tomorrow (March 11). Friends have asked how I’m feeling about the upcoming surgery, and specifically whether I am feeling nervous or scared. Surprisingly, although I’ve never had any form of surgery before, I am not feeling particularly scared. It could be that I’m not actually thinking about it all that much. Sure, I have been thinking about it because of the decision making that I’ve had to do, but from a kind of existential or reflective standpoint, I haven’t been spending very much intellectual energy on it. From the beginning of this ordeal, undergoing surgery has been a given– I never expected there to be any other option and perhaps because of that, ruminating on it hasn’t seemed necessary.

Additionally, surgery has been an accepted way to treat breast cancer for a very very long time. According to the book the Emperor of Maladies, there is a known story from 500BC of a Persian queen that had a breast tumor so painful that she just had to have it all cut off. Chemotherapy, on the other hand, seems to be  more controversial, not in the medical community, but among laypeople. It is a common protocol for treating cancer, but there is no shortage of dire warnings, tirades and conspiracy theories on the internet about chemotherapy being pushed as a result of the machinations of big pharma. And yes, chemotherapy is essentially a suite of poisons that are used to kill cells and in that killing cannot necessarily distinguish between non-cancerous and cancerous cells, so I can see how it can seem like a gamble. When I went forward with chemotherapy, it felt like I had to defend it somewhat, while surgery has not raised the same kinds of concerns from others. And, thus, absent the external swirl of opinions, going forward with surgery seems pretty straightforward and I’m ready to just get on with it.

I’ll be getting a unilateral mastectomy with no reconstruction. Writing this makes me think about how interesting it is that in this context discussion of the breast is so clinical. I’ve had friends and acquaintances ask about the kind of surgery I’ll be getting and I find myself discussing this body part in detail but with a kind of medical detachment. My interlocutor usually follows suit, but when I think back to it, it’s so funny, because our conversation can involve pretty intimate questions about my boob that I otherwise would feel very uncomfortable answering. But in this case, a cancerous organ is a cancerous organ and discussions about “cutting it all off” doesn’t engender the slightest bat of an eyelash.

So, the title of this post. Most days I’m fretting about whether I’ll ever get my energy back but sometimes I’ll think backwards and already in the span of a month can’t quite remember all the details of how bad it was on chemo. That’s a good thing, because it tells me that I have made physical progress! At the same time, I feel it’s important that I take stock honestly and openly about the “ugly stuff” because it can serve as a reminder of how far I’ve come and at the same time, I think could be a resource if anyone else with breast cancer ever finds this blog. I know that as I was searching for blogs to read, I did want to know how bad it could be, though that’s not for everyone. Additionally, I recognize that the nadir of my experience wasn’t even that extreme in comparison. Rather, it was also the accumulation of relatively minor annoyances that contributed to making the experience difficult. In hindsight, it’s easy to brush aside some of the side effects that were more irritating rather than severe, but I want to make sure I document this so that years ahead I won’t think back and wonder “did I make all  that up?”

The good

• I’ve been using the same bottle of body wash/shampoo that I bought in October and it’s only half done. My showers are about 5 minutes and my head dries really fast. No cold, wet hair in the winter for me!

The bad (i.e. tolerable annoyances)

On A/C

• Headaches where my head felt clammy and like I had been exposed to extreme amounts of pollution
• Hair loss (including my nose hairs! Which, doesn’t seem like a big issue at first, but I can no longer anticipate snot coming out my nose, which can be very embarrassing when trying to have a conversation.)
• Tacky/dryish mouth with a sickly sweet taste

On Taxol

• Muscle twitching in my legs (imagine someone constantly pinching you and your muscles recoiling from that)
• Wobbly leg muscles, feeling like a newborn fawn
• Constant mouth taste of metal and/or rancid garlic
• Random regurgitation of food

On Neulasta (a white blood cell stimulator)

• Brittle and painful bones (felt like a piece of porcelain that could be cracked in any moment)

Lingering

• Nail discoloration
• Brittle and weak nails
• Dry mouth
• Acid reflux and the feeling of food stuck in my esophagus
• “Chemo brain” and difficulty finding words; this is especially annoying when I’m in meetings and suddenly it feels like everything is moving very slowly and my thoughts come to me only at a glacial pace
• Hot flashes (which is likely more related to being in menopause now, rather than the chemo itself per se)
• Neuropathy– loss of sensation in my fingers (imagine that you’ve scalded your fingers slightly, now imagine that feeling doesn’t go away)
• Freezing feet and toes: I thought this was related to neuropathy and having some temporary nerve-related effects, but the doc said this was something different, though they don’t exactly know what the cause is

 

The ugly (i.e. made life more challenging and/or sometimes made me cry)

On A/C

• Constipation and then bite-a-towel-to-get-through-it bowel movements

On Taxol

• Irritated veins: my veins are pretty small and even seasoned nurses and phlebotemists don’t always know what to do– my right arm has “juicier”veins, you might say and I was trying to use that side more because after surgery I won’t be able to have IVs on that side. As a result, my veins were pretty irritated and a few times when I was getting a benadryl drip, it felt like I had fire ants eating up my arm. (Taxol can cause allergic reactions, so the benadryl is used as a precaution.)
• Painful hand and finger swelling (bad enough so I couldn’t turn a key or a doorknob)
• Extreme can’t-get-out-of-bed fatigue with a side of “oh my gosh, when will this day ever end. HOLY CRAP it’s only been 8 minutes since I looked at the clock, how will I ever get through today?”
• Vomiting 8 times in one day, with no food and barely any water in my system and finally seeing that bile is indeed yellow

Lingering

• Consistent fatigue and muscle ache

Ok, so that’s it for now! I’m heading to bed early since I have to be at the hospital by 5:30am. Surgery is at 7:30am and should take about 2-3 hours. I’m only staying one night in the hospital. The next time y’all see me, I’ll be one body part lighter…