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.

Update After Chemo



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.

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 with 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. 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.