A couple of months before the end of chemo, when we noticed that my hair was growing ever so slightly, Bob noticed that well, ahem, some of the hairs looked like they were coming back white. WHAT? NO WAY! Total denial. I told him, nope they don't look white to me...I think they are just whispies and really light...not white. Did I mention denial?
Past couple months I hadn't really checked back in on the status on my stubble up there, but then a couple weeks before the last chemo I take a peek and ......eeeek, there are a lot more whites than I was anticipating. Crap. So I don't say anything for a little while (denial denial denial) but then at the last chemo, when Heather stopped by, I whispered to her (like I was admitting I had a drug problem) "Um, I think my hair is coming back white."
"WHAT! No way!" she gets up in there, takes a look. "I don't know...it doesn't look white to me...it looks like it's coming back blonde."
Now, chemo is different for everyone, everyone has different reactions, everyone has different symptoms. But do I actually think that my dark brown hair is coming back after chemo blond? Probably not. But that doesn't matter because I leapt on it like a live grenade.
"You know what...you're right. It DOES look more blonde." I nodded my head enthusiastically.
Heather took another look, "yep...blonde for sure. White hair is all wiry. This hair looks fine. It's blonde."
And so just like you need your best friend to tell you that your jeans are not too tight; that guy that didn't call you back is a total loser......I needed my best friend to tell me on my last day of chemo that my hair wasn't coming back white...it was coming back BLONDE. Thank you friend.
A couple more weeks went by and well....the hair just wasn't growing anymore. It still looked blonde (or white, whatever you want to call it) and light and wispy. Like a baby chick. But it didn't look like any new hair was coming out. I mean, what the what...why isn't my hair growing? I was a human hair factory before chemo. My hair grew one to two inches A MONTH. I never sweated a bad haircut because after a couple weeks it was totally grown out anyway. So when chemo ended I honestly thought it would be cha cha cha chia and just started growing like crazy. But nothing was happening. In one of my weekly appointments with the radiation nurse I asked her what her experience was since I am sure she sees a lot of people after chemo. She said it typically takes 2 to 3 months for the hair to start to grow back. She might have well just kicked me in the face. TWO TO THREE MONTHS TO START TO GROW BACK?! WHAAAAAAAAAAAAAAAAAAAAAAAAAAAT????? I thought I would need a haircut in 2 to 3 months!? So needless to say I left there a little devastated. And quick online research confirmed....yes, most people waited about 2 months for it to start to grow and it usually starts out at 1/4 inch a month. And I was only at week 4. Boo.
But more online research also brought up that if I had used Rogaine while I was in chemo my hair would have grown back faster (per a clinical trial). WHAT?! Why did no one tell me this?! Thinking it was not too late, I asked my mom to pick up some Rogaine when she went to the store that next day and started using it right away. And I am sure it was a total coincidence (since Rogaine takes months to work) but my hair started growing within a couple days (thank you hair factory). So at 5 weeks out from chemo, I have a little fuzz up there. And no, it's not all white...or blonde. It's coming back in mostly the dark brown that I had before. The white/blonde baby chick hair was just a phase before my "real" hair grew back in.
So I was very happy with this progress until............a few days ago I was washing my face before bed and I thought "hmmm, something looks off with my face. Is it puffy or something? Did I gain weight?" I couldn't put my finger on it, but something was different. I felt like I had an eyelash in my eye, so I got close up to the mirror to see if I could get it out....and WHAT THE ^$%& I am losing my eyelashes!!!!!! Yes, large clumps of eyelashes were missing on my lower lid and I had about half the lashes I normally have on my upper lid. And then after further inspection, oh my god....I'm starting to lose my eyebrows too. Five weeks out from my last chemo and I JUST starting to lose my eyelashes and eyebrows? What? That doesn't happen.....right? OH yes it does unfortunately. I was pretty bummed about it all for a couple days because I thought all of that was over...the new physical symptoms that are constant reminders of what I just went through. But I had to make my peace with it. It was happening...nothing I could do about it. I just have to pretend like it's 1997 and pencil thin barely there eyebrows are in. But I'm too afraid to wear eyeliner to fill in the missing eyelashes because what if when I take the eyeliner off at night I rub off the remaining eyelashes!? Sigh. So while the hair grows back on my head, I mourn my fallen soldiers on my eyebrows and eyelashes. So far they haven't all fallen out (knock on wood) and I am hoping that too is just a phase like my baby chick hair.
Tuesday, October 4, 2011
Monday, October 3, 2011
chemo - the aftermath; and the start of radiation
The weeks following the last chemo can be summed up in 2 words: awesome & frustrating. Awesome because I could finally clear all the prescription bottles off my nightstand. Awesome because I don't dread Thursdays anymore. Awesome because there are no more throbbing pains, migraine eyes, headaches, bloody noses, mysterious bruises and waves of nausea. Awesome because every day I feel a little bit better.
The frustrating part is that even though I started to feel better every day, it's only marginally better everyday...like 2% better. And about a week after chemo, I hit an all new low on the energy level. There were days that I could barely summon up the energy to shower. And once I did shower, I had to lay down for a half hour just to get the energy up again to get dressed. That was a low. I'm not there anymore (thank god) but at only 2% more energy a day, it's a slow build...and it's frustrating.
About 2 weeks after the last chemo I was hanging by a thread emotionally. I was sick of being sick, tired of being tired, and just wanted to feel better again....NOW please. I would lean over to tie my shoes, feel tired, and tears would pour out of my eyes. Why did I still have to feel like this? When would this pass? Thankfully I am not there anymore either, but I am still frustrated that currently at 5 weeks out I am still tired.
When I started radiation, 3 weeks ago, I was E X H A U S T E D. I assumed that this was because of the radiation, but when I talked to my radiation oncologist about it at our weekly meet ups, she told me it was still the chemo and my body trying to heal from it. In her experience, the patients that she sees after chemo are at their "peak" for fatigue and by the end of radiation I should actually feel better than at the beginning and every day I should start to feel a little bit better. And it's true...I definitely feel better than 3 weeks ago. But I have either hit a plateau and this is as good as it gets for a while, or else there is a small pause because the last week or so I have not been gradually improving....it's just about stayed the same.
But I'll back up a little bit since it's been 5 weeks (!) since I have posted last and I haven't talked about radiation at all. It all starts with a "planning session" 2 weeks after chemo. In this session you get a cat scan and x rays so that can determine where exactly they want to direct the radiation. You are set up on a simulator and have to lay like a sack of potatoes so that can set you up exactly how they want you to lay for the radiation machine. They make a mold of the upper part of your body so that you are in the exact same position every time. And they give you tiny tattoos (they look like small freckles) as markers to make sure you are lined up in the exact same spot each time. My tattoos are 3 tiny dots - one in between my breasts, and one under each breast. Every morning I go in for radiation I lie (like a sack of potatoes again) as they move me around on the table into the exact spot that they want me and line up my tattoos.
One week after the simulation, I started the treatments. My first radiation date was September 15th. It's every week day (with weekends off) and each session is about 2 minutes. Very very quick. It takes more time to park the car at the hospital than it does to get radiation. I show up every day at approximately the same time (they assign you an exact time - my appointments ranged from 9:36 to 10:36, then just this week leveled out and are now 11:12 the rest of treatment). If I had really bad eye sight (or were slightly delusional) it might almost be like going to spa every day...kind of. You walk in past the reception desk (no need to check in for daily radiation, they want you to walk in "like you own the place"), grab a hospital gown off the shelf, go to a changing room (there are 6 to choose from), undress from just the waist up, put a gown on, lock up your belongings in a locker, then go and sit in the private waiting room (just for patients) and read a magazine. A technician comes out and gets you and then we head back to the room with the machine. I lie on the table in my mold and let the 2 technicians move me and line me up to exactly the spot that I should be. They leave the room, and the treatment starts. It's 45 seconds at one angle, then the machine moves over and radiates another 45 seconds from another angle. The technicians come back into the room and we are all done.
Once a week I meet with my doctor to discuss any concerns and for her to monitor my progress and any side effects. So far it's been very uneventful....my only side effect has been fatigue (which is still much better than the fatigue I felt at the end of chemo). The "sunburn" skin probably won't happen until week 4 (and hopefully it won't be bad) but we won't know until then. In the meantime, they direct you to take preventative measures: washing with very mild soap (I use baby soap), applying either aloe or calendula cream twice a day (I use Baby Calendula cream by Weleda), and you cannot apply anything in the area up to 4 hours before treatment...so no deodorant, no lotions....nothing in the area. I apply the calendula cream immediately after the radiation session and then again at night before bed. So far so good....but again, I probably won't show any symptoms for another week or so anyway. Fingers crossed these preventative measures are working.
Everyone asks how radiation is and my only response has been "good"....which good to me equals "way better than chemo" but unfortunately good is not yet "back to feeling normal" which again is frustrating. Everyone also assumes it must be a big pain in the ass to go to radiation every day....but it's not. I will take 2 minutes every day to 7 hours every other week anytime. So again, I am comparing it to chemo and it is so so so so so much easier. If I hadn't gotten chemo before I might think radiation is a pain in the ass, but to me it's the easiest thing I've done yet.
The one thing that did surprise me was that at the start of radiation, it was harder emotionally than I anticipated. My second treatment, as the machine lined up directly over me, I felt tears well up...I couldn't believe I was doing this. I couldn't believe I was putting more toxins in/near my body. I couldn't believe that again I had to weigh the risks of doing long term damage to my body. It was overwhelming. But as long as I push those thoughts out of my head, I am fine. And ...I have to push those thoughts out of my head. Because even though we don't know if this is working, it's our best shot. And right now, that's all I've got. And I've made my peace with that. A lot of very smart people are doing everything they know to make sure this doesn't happen again. So for now, that is what I have to focus on.
Fall has finally settled in for Portland. The air feels crisp, it smells like rain in the mornings, the leaves are starting to turn. At first I was sad at the transition away from summer...from the long evenings, the warm breezes, eating dinner outside. But Fall is beautiful in Portland, and even though life still feels like it's on "pause" for us, I am looking forward to what Fall is - watching football on the weekends...getting the sweaters and jackets out of storage...planning a Halloween costume for Thomas. It feels good to start planing something again.
The frustrating part is that even though I started to feel better every day, it's only marginally better everyday...like 2% better. And about a week after chemo, I hit an all new low on the energy level. There were days that I could barely summon up the energy to shower. And once I did shower, I had to lay down for a half hour just to get the energy up again to get dressed. That was a low. I'm not there anymore (thank god) but at only 2% more energy a day, it's a slow build...and it's frustrating.
About 2 weeks after the last chemo I was hanging by a thread emotionally. I was sick of being sick, tired of being tired, and just wanted to feel better again....NOW please. I would lean over to tie my shoes, feel tired, and tears would pour out of my eyes. Why did I still have to feel like this? When would this pass? Thankfully I am not there anymore either, but I am still frustrated that currently at 5 weeks out I am still tired.
When I started radiation, 3 weeks ago, I was E X H A U S T E D. I assumed that this was because of the radiation, but when I talked to my radiation oncologist about it at our weekly meet ups, she told me it was still the chemo and my body trying to heal from it. In her experience, the patients that she sees after chemo are at their "peak" for fatigue and by the end of radiation I should actually feel better than at the beginning and every day I should start to feel a little bit better. And it's true...I definitely feel better than 3 weeks ago. But I have either hit a plateau and this is as good as it gets for a while, or else there is a small pause because the last week or so I have not been gradually improving....it's just about stayed the same.
But I'll back up a little bit since it's been 5 weeks (!) since I have posted last and I haven't talked about radiation at all. It all starts with a "planning session" 2 weeks after chemo. In this session you get a cat scan and x rays so that can determine where exactly they want to direct the radiation. You are set up on a simulator and have to lay like a sack of potatoes so that can set you up exactly how they want you to lay for the radiation machine. They make a mold of the upper part of your body so that you are in the exact same position every time. And they give you tiny tattoos (they look like small freckles) as markers to make sure you are lined up in the exact same spot each time. My tattoos are 3 tiny dots - one in between my breasts, and one under each breast. Every morning I go in for radiation I lie (like a sack of potatoes again) as they move me around on the table into the exact spot that they want me and line up my tattoos.
One week after the simulation, I started the treatments. My first radiation date was September 15th. It's every week day (with weekends off) and each session is about 2 minutes. Very very quick. It takes more time to park the car at the hospital than it does to get radiation. I show up every day at approximately the same time (they assign you an exact time - my appointments ranged from 9:36 to 10:36, then just this week leveled out and are now 11:12 the rest of treatment). If I had really bad eye sight (or were slightly delusional) it might almost be like going to spa every day...kind of. You walk in past the reception desk (no need to check in for daily radiation, they want you to walk in "like you own the place"), grab a hospital gown off the shelf, go to a changing room (there are 6 to choose from), undress from just the waist up, put a gown on, lock up your belongings in a locker, then go and sit in the private waiting room (just for patients) and read a magazine. A technician comes out and gets you and then we head back to the room with the machine. I lie on the table in my mold and let the 2 technicians move me and line me up to exactly the spot that I should be. They leave the room, and the treatment starts. It's 45 seconds at one angle, then the machine moves over and radiates another 45 seconds from another angle. The technicians come back into the room and we are all done.
Once a week I meet with my doctor to discuss any concerns and for her to monitor my progress and any side effects. So far it's been very uneventful....my only side effect has been fatigue (which is still much better than the fatigue I felt at the end of chemo). The "sunburn" skin probably won't happen until week 4 (and hopefully it won't be bad) but we won't know until then. In the meantime, they direct you to take preventative measures: washing with very mild soap (I use baby soap), applying either aloe or calendula cream twice a day (I use Baby Calendula cream by Weleda), and you cannot apply anything in the area up to 4 hours before treatment...so no deodorant, no lotions....nothing in the area. I apply the calendula cream immediately after the radiation session and then again at night before bed. So far so good....but again, I probably won't show any symptoms for another week or so anyway. Fingers crossed these preventative measures are working.
Everyone asks how radiation is and my only response has been "good"....which good to me equals "way better than chemo" but unfortunately good is not yet "back to feeling normal" which again is frustrating. Everyone also assumes it must be a big pain in the ass to go to radiation every day....but it's not. I will take 2 minutes every day to 7 hours every other week anytime. So again, I am comparing it to chemo and it is so so so so so much easier. If I hadn't gotten chemo before I might think radiation is a pain in the ass, but to me it's the easiest thing I've done yet.
The one thing that did surprise me was that at the start of radiation, it was harder emotionally than I anticipated. My second treatment, as the machine lined up directly over me, I felt tears well up...I couldn't believe I was doing this. I couldn't believe I was putting more toxins in/near my body. I couldn't believe that again I had to weigh the risks of doing long term damage to my body. It was overwhelming. But as long as I push those thoughts out of my head, I am fine. And ...I have to push those thoughts out of my head. Because even though we don't know if this is working, it's our best shot. And right now, that's all I've got. And I've made my peace with that. A lot of very smart people are doing everything they know to make sure this doesn't happen again. So for now, that is what I have to focus on.
Fall has finally settled in for Portland. The air feels crisp, it smells like rain in the mornings, the leaves are starting to turn. At first I was sad at the transition away from summer...from the long evenings, the warm breezes, eating dinner outside. But Fall is beautiful in Portland, and even though life still feels like it's on "pause" for us, I am looking forward to what Fall is - watching football on the weekends...getting the sweaters and jackets out of storage...planning a Halloween costume for Thomas. It feels good to start planing something again.
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