Monday, October 17, 2016


It's been a very long time since I last wrote in this blog. I have sat down at my keyboard numerous times to write, but nothing came. No words materialized. I want to tell you all about my surgery. I want to tell you about my recovery. I want to tell you everything I've been through and everything that is yet to come. But it's surprisingly hard to find the words to describe the things that break us. 

And I am broken. 

As anyone who has read this blog knows, I had a double mastectomy with axillary dissection on September 22nd – three and a half weeks ago. I went into the surgery feeling surprisingly strong. Chemo had been physically exhausting, but I was mentally tenacious. I was optimistic about having the worst behind me. Sure, chemo was a pain in the ass, but I was proud of myself for having made it through. Heading into surgery, I felt a tiny bit invincible.

On the day of my surgery, the operating rooms were backed up, so my surgery started two hours late. I didn’t mind too much. I was in no hurry, really. I laid in my bed in pre-op and listened to Ruanita make ridiculous jokes as she paced back and forth. She was much more nervous than I was.

The surgery itself lasted two seconds – at least from my perspective. I remember scootching from my bed onto the operating table. That is the last thing I remember. I woke up in recovery a few hours later wrapped in large gauze pads and an Ace bandage with drains dangling from either side of my chest. I was oriented x3 and almost immediately taken to my room for my overnight stay. I was not in pain. Surprisingly, I felt no pain at all. To the dismay of both the evening nurse and the overnight nurse, I never once asked for my “as needed” pain medicine. Of course, I felt stupidly overconfident. I was convinced surgery was going to be a breeze after what I had been through. I didn’t even need pain meds, after all.

The next day, I went home and the fun began. For two weeks, Ruanita emptied my drains twice a day religiously. She changed my gauze. She ushered the kids away from me. She helped me in and out of the shower. She dressed me. She tucked me into my daughter’s twin bed at night before heading upstairs to sleep in our big queen bed all alone. I could only lay on my back. I couldn’t move. I couldn’t sleep. I couldn’t grab another blanket when I got cold. Getting up to go to the bathroom in the middle of the night, I broke out in a cold sweat. Getting back in bed resulted in tears every time.

The drains became my worst enemy. Sewed into my sides and dangling down to my knees, the drains were in the way at all times. I never realized how much I move my torso on a daily basis. Every tiny move I made pulled on the drains or twisted the drains or bumped the drains. I would cry out in pain and Ruanita would come running.

“Are you okay? What’s wrong?!”

“Nothing,” I would reply. “I’m fine.”

“I’m fine” became my mantra in the weeks following surgery, but it was far from the truth. It’s just easier to say that I am fine than trying to explain how I am anything but. It’s hard to put into words how pain wears on you. How a body can betray you. How you start to wonder if you can ever trust your body again. I lost myself there for a while. It’s something that few understand and that’s nearly impossible to explain.

My chest is not my own. I didn’t think I would miss my breasts. I was never a great fan to begin with. They were always too big. Too in the way. Too…just too much. And I don’t miss them, believe it or not. I was never one of those women who thought my breasts made me. I don’t define myself in that way. So no, I don’t miss my breasts.

But I miss my softness.

My chest is hard. Lumpy. I feel as though I am wearing an iron breast plate all the time. And with every move, it pokes me. It prods at me. When I lay on my side, there is nothing soft about me anymore. When I try to snuggle against Ruanita in the night, it is my hard chest against her hard spine. Bone bumping against bone. No softness. No suppleness. Nothing that I recognize as me.

The surgery is over and done. My incisions are beginning to itch – a sure sign of healing. I had my drains removed a week and a half ago, but I still have a large amount of fluid pooling in my chest. I had an ultrasound aspiration done last Thursday and will likely have another one on Wednesday of this week. My surgeon is talking about putting in a smaller drain on the left until my body is able to absorb the fluid on its own. At this point, I no longer seem to care.

I am cancer free today. My surgeon removed all of the cancer they were able to see with clear margins on all sides. I should celebrate this fact, but I find myself crying instead. Of the 14 lymph nodes removed from my left armpit, 7 were still cancerous. Though not tragic, this was not exactly the result my oncologist was hoping for, so we are going on the offensive. We are choosing to be aggressive in our efforts to keep the cancer from coming back.

Beginning in November, I will undergo 6 weeks of daily radiation treatment. After radiation, the plan is to completely shut down my ovaries – either chemically or surgically (we have yet to decide). My type of cancer needs hormones to grow, so turning off my hormones will, theoretically, stop the growth of any future cancer. I will then receive a medication called Anastrozole and another drug whose name escapes me at the moment for ten years to suppress estrogen and progesterone in my body. I will also be participating in a 5-year clinical trial for a drug called Palbociclib that is currently approved for use with women who have stage 4 breast cancer. The trial is to determine if there are benefits for women with stage 3 breast cancer. The clinical trial will include plenty of additional office visits and lab work. But hey, advancing scientific research is a good thing, right? All of this will take place in the hopes that cancer will never rear its ugly head anywhere near me again.

Long story short, we are nowhere near done. My oncologist told me that, although he considers me cancer-free right now, he will not call me “cured” until I have gone ten years without a recurrence.

Ten years.

Where will I be ten years from now? WHO will I be? When all is said and done, I can’t be the same person I was before. Physically. Mentally. Chemically. Hormonally. I am a different person altogether. I will never again be the woman I was in March of 2016. 

And I miss her. Every day I miss her.

Wednesday, August 31, 2016

Update from the In-Between

It’s been a while since I posted a new blog, so I thought it might be time to update everyone on how I am doing,

So…how AM I doing?

It’s hard to say. I am doing both really well and annoying NOT so well.

I’m not sick, so that’s a good thing. Today I took what will hopefully be my very last steroid pill. The weaning has been completed. So now I wait to see if the weird, leprosy-like rash comes back with a vengeance again. Fingers crossed it does not. My face really can’t possibly get any rounder without me running the very real risk of taking flight like a balloon up into the late summer sky (see photographic evidence above), so I'd very much like to be done with steroids, thank you very much. 

I am generally still puffy all over. I’ve gained 12 pounds since chemo started way back in April, but it feels more like 30 or 40. My clothes are tight. My belly is protruding like it’s never protruded in my entire life. Once my boobs are gone, my belly will appear even bigger. I will seriously be round. Or at least oval shaped. Like a hot air balloon. Or a watermelon. Or a large silver platter piled high with Pepperidge Farms Pumpkin Cheesecake cookies. Mmmm…now I am hungry. But that’s nothing new. I am hungry most of the time.

My eyebrows and eyelashes are completely gone. I can’t even begin to tell you how annoying it is that they are the last of the hair to go. Just as I finish chemo and am intent on feeling normal again, I look sicker than I ever have. And since they were the last to go, they will likely be the last to grow back in. Ugh.

Unlike my eyebrows and eyelashes, the hair on my head has started growing back, but only on the right side. I have an absolute ton of hair growing in on the right side of my head. It is course and fuzzy – sort of salt and peppery, to my dismay – and long enough now for me to tug on it. But I have no hair whatsoever on the left side or on the top of my head. I am debating shaving my head again so it all comes in evenly, but I hate the thought of shaving off perfectly good hair that is actually growing on my head.  Maybe it will even out on its own? Or maybe I will rock a cool, hipster asymmetrical look?

I’m excited I have hair growing, but because it’s only growing on one side of my head – and because I am still 95% totally egghead bald – I still feel compelled to wear a hat or head scarf when I leave my house. If I were braver, I would just go bald, but I am not that comfortable in my own (shiny, hairless) skin. I probably will wear a hat for many months to come. I have come to loathe all of the cute hats friends have knitted for me. Even the thinnest of fabric feels like I am wearing a fur-lined wool mukluk hat. In the heat of summer. I sweat in a most unattractive way. It’s embarrassing and really quite ridiculous. Of course I couldn’t be one of these cancer patients who get thin and frail and who is constantly wrapped in a blanket. No, not me. I am big and bulky and…sweaty.

I still get easily fatigued two weeks after my last chemo. Actually “easily fatigued” doesn’t even describe it. I can barely walk up the steps to my bedroom withOut huffing and puffing and feeling like I may very well pass out. Ruanita has been doing our grocery shopping lately because I’ve not had the stamina to do it. Last week, however, I decided that I felt good enough to go to Target all by myself to pick up a few things. I walked around the store for maybe 30 minutes at the most, and I was completely and totally exhausted by the time I got home. I actually had to lie down for a couple of hours to recover. It is totally ridiculous. Between the fatigue and the bloatedness and the bald head and the sweat, I feel like the ugliest, laziest, largest obese man who ever lived! 

How's that for a positive body image?

And it's not just my body. I have also discovered that “chemo brain” is real. I find myself struggling for words sometimes. Or I completely say the absolute wrong word. In my mind, I said the right word, but Ruanita and the kids are constantly correcting me because I am using wrong words. And sometimes the words are not even close to what I meant to say. But I say them with such confidence. Like I totally said the right word. Just a few minutes ago, I meant to say "fan" but instead said "map" and didn't even notice until Sophie pointed it out. It’s really weird. I’ve also found that the effects of chemo – including chemo brain – are affecting my driving, which is something I didn’t expect at all. My grip on the steering wheel is tenuous at best and my mind seems to wonder off when I am driving. Like I sort of zone out. I’ve run into more curbs than I care to mention. I do not feel confident behind the wheel at all these days, which sucks because I don’t feel very confident with Ruanita behind the wheel either. Let’s just say she is a rather…umm…err…aggressive driver.

Because I have finished chemo (and I am anxious to reduce the huge number of pills I take daily), I discussed reducing my meds with my oncologist at our appointment last week. He said that if I did not feel the Gabapentin (Neurontin) was helping I could cut out my nighttime dose and only take it in the morning. So I did. I am beginning to think that was a mistake. The neuropathy in my hands and feet seem to be worse now than it has ever been since I started chemo. My left hand is almost useless. It is numb from my wrist to my fingertips most of the time. And not just numb. Numb and tingly – like the pins and needles you feel when your foot falls asleep. Only it refuses to wake up. My right hand isn’t quite as bad, but it’s not good either. My fingers are numb quite often.  They tingle. They burn a bit. My fingernails ache. I drop things a lot. I have trouble gripping anything, particularly with my left hand. Opening bottles or jars is hard. Even light things will just fall out of my hand. It’s annoying, to say the least. I do not know for sure if the increase in the neuropathy is a result of the decrease in my Gabapentin or if it is merely the end result of 20 weeks of chemo. I am going back on the full dose of Gabapentin and we’ll see how it goes. The worst part of the neuropathy is that it may be a full year before I feel any real, significant relief.

Good times.

Okay, I know I sound mostly negative. I am more annoyed than anything, but I am not really feeling negative, per se. I’m just frustrated that I don’t seem to be getting back to normal as quickly as I would like. Intellectually, I realize that it will take time – probably quite a long time – before I feel normal again. Emotionally, however, I want to be normal today. Right now. This very minute. Before bedtime, please.

I am trying to focus on the positive. With chemo, I went from 10.1 cm of disease in my left breast to 1.9 cm of disease. The chemo did exactly what it was meant to do in my case. It killed the cancer. With my surgery scheduled for September 22nd, we will remove the last of the cancer. Radiation will follow and, fingers crossed, I will be given a completely clean bill of health just in time to celebrate the holidays with my freaking awesome family. God willing, I will look back on this experience as just ONE YEAR in my life. One year that showed me how unexpectedly strong (seriously...totally unexpected) I really am. One year that showed me how amazing and generous people can be. One year that made me fall in love with the indomitable woman I married over and over and over again.  One year that brought me closer to my hilarious, brilliant, kind children. One year that showed me that my mother will always, always have my back. Just. One. Year. 

Like my mom always says, “You can put up with shit in your shoes for one year.” (You gotta love Southern momma colloquialisms, right?)

This has certainly been a shitty year, but it can only go up from here.