A List of Things I'm Thankful For:
1. Imodium A.D.
2. On the other hand, stool softeners
3. Cute hats
4. Friends who are good cooks
5. Pain medication
6. Nausea medication
7. Hair
8. Keebler Graham Crackers
9. Puppy kisses
10. Sleep
11. Black-out curtains
12. Starbucks Double Chocolate Chip Frappacino
13. Cozy slippers
14. Boobs (sigh)
15. Everyone who loves me and has taken care of me the last few months and longer...
Boob Count = 125
Thursday, November 24, 2011
Tuesday, November 22, 2011
One Month Later
It's been nearly one month since I finished chemo. I saw my oncologist today for a follow-up appointment.
The appointment started, as always, with a blood draw. No big deal with my friend, the port. After that, I had to wait in the lobby for about 40 minutes while they checked the blood before my appointment. I sat and read a book. When the nurse came to call me, I was really stiff and had trouble getting up and walking. My muscles and joints are still on strike and I have a lot of pain, especially when I get up from sitting down after an extended period. When I first get up, I walk like I'm 90 years old. But once I get going, I do much better - I walk like I'm only 80 then!
My not so smooth moves didn't escape notice of the nurse. The nurse suggested that I might want to look into getting a cane. A CANE! I was horrified! Trying to make her understand that a cane wouldn't help anyway, I told her, "Well, that won't work because it's BOTH of my hips that hurt..." Ha! So there! Instead of making things better, she then said, "Oh well, you could get TWO canes...or a WALKER!" Oh my gosh, I almost passed out from the thought. A walker! For me! 42 years old! I've hit bottom. Still trying to be helpful, she then suggested that I could start using those little motorized carts in the stores I go into. This whole thing was going downhill fast. We did finally agree that it'd be nice to have one of those personal motorized people movers. Just for fun...and to run over people.
The doctor came in soon after and the appointment began with the whining session. The whining session is something I've gotten pretty good at. I like to include a whining session whenever I go to see my physical therapist as well. Unfortunately, Maggie (my physical therapist) isn't as amused by the whining session as my oncologist is. The oncologist tends to humor my whining. I like that.
Anyway, I spent a good 5 minutes talking about all my aches and pains and the general feeling of blech that I'm experiencing. I'm sleeping all the time and my joints and muscles are revolting against me, especially my hips, back and shoulders. Dr. Coughenhour (my new oncologist since my other one left to go find a cure for cancer and stuff) looked at my blood work from that day and said that my blood counts are going up. They aren't back to normal but they are moving in the right direction. I'm still anemic, but the iron counts are also moving up. Hopefully it will continue to move in the right direction and I won't need another iron infusion. I'm concerned that I'm still having to take pain medication to sleep - I'm in too much pain to get comfortable in bed without them. Dr. Coughenhour took all my whining in stride and told me to not rush things. It's only been a month. "Rest, take it easy and be good to yourself," was his advice. I like him.
We talked about "maintaining" after cancer. I'll need a chest x-ray every 6 months to check my lungs. This is already covered under the tests that I get every 6 months to monitor the renal cancer. However, if anything is found on my lungs, I'll have to have a lung biopsy to see which cancer it is - renal or breast. That was kind of a terrifying realization. A lung biopsy is not on my bucket list of things I want to try. The odds of this happening are low - I did everything right. I didn't everything I was supposed to. But, we'll be watching and waiting.
I'll be starting on a daily cancer drug soon. It was something I expected to start now but since I'm still struggling with the side effects of the chemo, the oncologist thought it best that I wait. There are some side-effects with the cancer drugs like muscle aches and joint pain so we need to be sure that I'm over the chemo side-effects before we pile anything else on top.
I have an appointment again in a month to see where I am and probably start on a cancer drug. Dr. Coughenhour says he expects I'll be feeling much better by then. I hope he's right!! If this goes on for much longer, I might be looking for a nice walker. I guess I could make it my own. Put some diamonds and Snoopy stickers on it or something. That would look super cool, I'm sure.
The appointment started, as always, with a blood draw. No big deal with my friend, the port. After that, I had to wait in the lobby for about 40 minutes while they checked the blood before my appointment. I sat and read a book. When the nurse came to call me, I was really stiff and had trouble getting up and walking. My muscles and joints are still on strike and I have a lot of pain, especially when I get up from sitting down after an extended period. When I first get up, I walk like I'm 90 years old. But once I get going, I do much better - I walk like I'm only 80 then!
 |
| I'll take the Ferrari people mover - thanks! |
The doctor came in soon after and the appointment began with the whining session. The whining session is something I've gotten pretty good at. I like to include a whining session whenever I go to see my physical therapist as well. Unfortunately, Maggie (my physical therapist) isn't as amused by the whining session as my oncologist is. The oncologist tends to humor my whining. I like that.
Anyway, I spent a good 5 minutes talking about all my aches and pains and the general feeling of blech that I'm experiencing. I'm sleeping all the time and my joints and muscles are revolting against me, especially my hips, back and shoulders. Dr. Coughenhour (my new oncologist since my other one left to go find a cure for cancer and stuff) looked at my blood work from that day and said that my blood counts are going up. They aren't back to normal but they are moving in the right direction. I'm still anemic, but the iron counts are also moving up. Hopefully it will continue to move in the right direction and I won't need another iron infusion. I'm concerned that I'm still having to take pain medication to sleep - I'm in too much pain to get comfortable in bed without them. Dr. Coughenhour took all my whining in stride and told me to not rush things. It's only been a month. "Rest, take it easy and be good to yourself," was his advice. I like him.
We talked about "maintaining" after cancer. I'll need a chest x-ray every 6 months to check my lungs. This is already covered under the tests that I get every 6 months to monitor the renal cancer. However, if anything is found on my lungs, I'll have to have a lung biopsy to see which cancer it is - renal or breast. That was kind of a terrifying realization. A lung biopsy is not on my bucket list of things I want to try. The odds of this happening are low - I did everything right. I didn't everything I was supposed to. But, we'll be watching and waiting.
I'll be starting on a daily cancer drug soon. It was something I expected to start now but since I'm still struggling with the side effects of the chemo, the oncologist thought it best that I wait. There are some side-effects with the cancer drugs like muscle aches and joint pain so we need to be sure that I'm over the chemo side-effects before we pile anything else on top.
I have an appointment again in a month to see where I am and probably start on a cancer drug. Dr. Coughenhour says he expects I'll be feeling much better by then. I hope he's right!! If this goes on for much longer, I might be looking for a nice walker. I guess I could make it my own. Put some diamonds and Snoopy stickers on it or something. That would look super cool, I'm sure.
Sunday, November 20, 2011
Advice to the Baldies
Now that I've been bald for 2 whole months, I have a lot of advice to give other baldies out there.
First of all, and most importantly, you actually have to wash your bald little head. I guess this didn't really occur to me. I remember washing my hair for the last time before shaving it off and being thrilled (well...as "thrilled" as you can be when you know you are going to lose your hair) that I could skip the whole hair washing routine for a while.
About a week after the head shaving, my bald head started to itch. This is when it dawned on me that you might actually have to wash your bald head! HUH! Go figure! It is skin after all. I consulted the expert baldy that I know (my husband) and asked him what he uses on his head. Well, he uses the bar of soap in the shower. This explains why any hair he has feels like a Brillo pad. Not that I had any hair at all at that point, but using the bar of soap that I use to clean "other" parts of my body, on my head....dripping into my eyes...that just seemed...well...WRONG!
I decided to look at all of the shampoos that I have and I was able to pretty much eliminate anything that said for "fuller hair" or "more lustrous hair" or "more manageable hair." Not really the product I was needing at that time. I settled on a dandruff shampoo that claims it soothes the scalp.
A soothed scalp is exactly what I needed. Mmmm.
Which brings me to my next piece of advice: You need DRASTICALLY less shampoo when you don't have any hair to soak it up. Suffice it to say that this did not occur to me until I had put way too much on my head and I had shampoo EVERYWHERE! Bright blue shampoo. All over the place. And since you have no hair to stop anything, it just runs down without abandon. My feet were blue, the shower was blue, everything was blue. It took me a good 5 minutes to find all of the blue and rinse it off.
Something else that came as a complete surprise to me was your hair actually starts to grow back between each chemo treatment. I didn't expect this! I guess I just thought it would all fall out and that would be it and I'd be one of those cool bald chicks like you see in cancer awareness pictures - with a smooth head. I never got the smooth head anyway because of my 5 o'clock shadow - but also my hair kept just growing back and then falling out again. I found that quite irritating - just make up your mind already hair!
It was a cycle. Chemo treatment, hair growing, hair falls out, chemo treatment, hair growing...you get it. The nice thing about having shaved my head was that then the hairs that fell out were pretty teeny and not a big deal. I wasn't finding hair everywhere - it was just all over the towel when I dried my head after washing it.
Unfortunately, one of the downsides to having your hair keep growing back is that hair that is growing back is really prickly! All those little hairs feel like they are stabbing you. Especially when you are doing your favorite during chemo activity - sleeping. Poke Poke Poke. I did find that wearing a open knit hat seemed to really help with the poking sensation. However, open knit hats tend to have a mind of their own and I woke up with aforementioned open knit hat over my face a couple of times - I thought I was suffocating. I'm okay now.
Another interesting thing about chemo hair, or my hair specifically, is that once I had shaved my head, some of my hair did start to grow and never fall out. I had really expected that it would all be gone, but it didn't work that way. Some of it started growing and now I have about 10% of my hair that is an inch long or so. Sadly, those all seem to be the gray hairs. Those damn gray hairs are really stubborn! About a month into chemo, my husband saw my hair growing back and exclaimed, "It's growing in blonde!!" (He was thrilled!) Sadly, I had to inform him that those hairs weren't blonde - but gray. "Oh...Oops" he said sadly. Yes, dude, I feel your frustration, I wanted to be blonde too.
Now, 3 weeks after finishing chemo, I expect that the hair will start growing back and staying! I can't wait to see what I end up with. They say chemo can change your hair drastically. I've heard stories of straight hair growing back curly or dark hair growing back blonde (there's still a chance for me!). Who knows what I might end up with!!
However, with my luck, it'll be gray and super curly so that I end up looking like a geriatric poodle.
I'd rather be bald.
First of all, and most importantly, you actually have to wash your bald little head. I guess this didn't really occur to me. I remember washing my hair for the last time before shaving it off and being thrilled (well...as "thrilled" as you can be when you know you are going to lose your hair) that I could skip the whole hair washing routine for a while.
About a week after the head shaving, my bald head started to itch. This is when it dawned on me that you might actually have to wash your bald head! HUH! Go figure! It is skin after all. I consulted the expert baldy that I know (my husband) and asked him what he uses on his head. Well, he uses the bar of soap in the shower. This explains why any hair he has feels like a Brillo pad. Not that I had any hair at all at that point, but using the bar of soap that I use to clean "other" parts of my body, on my head....dripping into my eyes...that just seemed...well...WRONG!
A soothed scalp is exactly what I needed. Mmmm.
Which brings me to my next piece of advice: You need DRASTICALLY less shampoo when you don't have any hair to soak it up. Suffice it to say that this did not occur to me until I had put way too much on my head and I had shampoo EVERYWHERE! Bright blue shampoo. All over the place. And since you have no hair to stop anything, it just runs down without abandon. My feet were blue, the shower was blue, everything was blue. It took me a good 5 minutes to find all of the blue and rinse it off.
 |
| Melissa Etheridge rocking the bald head! |
It was a cycle. Chemo treatment, hair growing, hair falls out, chemo treatment, hair growing...you get it. The nice thing about having shaved my head was that then the hairs that fell out were pretty teeny and not a big deal. I wasn't finding hair everywhere - it was just all over the towel when I dried my head after washing it.
Unfortunately, one of the downsides to having your hair keep growing back is that hair that is growing back is really prickly! All those little hairs feel like they are stabbing you. Especially when you are doing your favorite during chemo activity - sleeping. Poke Poke Poke. I did find that wearing a open knit hat seemed to really help with the poking sensation. However, open knit hats tend to have a mind of their own and I woke up with aforementioned open knit hat over my face a couple of times - I thought I was suffocating. I'm okay now.
Another interesting thing about chemo hair, or my hair specifically, is that once I had shaved my head, some of my hair did start to grow and never fall out. I had really expected that it would all be gone, but it didn't work that way. Some of it started growing and now I have about 10% of my hair that is an inch long or so. Sadly, those all seem to be the gray hairs. Those damn gray hairs are really stubborn! About a month into chemo, my husband saw my hair growing back and exclaimed, "It's growing in blonde!!" (He was thrilled!) Sadly, I had to inform him that those hairs weren't blonde - but gray. "Oh...Oops" he said sadly. Yes, dude, I feel your frustration, I wanted to be blonde too.
 |
| Cute dog but not a good look for me! |
However, with my luck, it'll be gray and super curly so that I end up looking like a geriatric poodle.
I'd rather be bald.
Friday, November 18, 2011
Is That It?
I'm really struggling with mixed feelings since finishing my chemo.
I should be elated that I'm finished! I should throw a party! Actually, I did throw a party with my friends and it was fun! But, I feel like I should be happy!
And I AM happy! I really am.
But....
That happiness comes with a lot of other feelings that I can't quite explain. I keep asking myself if I'm depressed but I don't think that depression really sums it up. I'm angry and confused and sad. And probably about 100 other emotions that I can't even quite identify. Every emotion that I didn't have time for the last 6 months has now crept to the surface.
When I found out that I had breast cancer back in May, I was devastated. I cried a lot through the process of being diagnosed, hearing about my options and finally choosing a double mastectomy. The whole thing completely challenged everything I have in me. I had the mastectomy in July, healing took 7 weeks during which time I found out that I had to start chemo right away. I started chemo, lost my hair, lost my energy, lost a lot. During those 6 months of my life (from diagnosis through chemo), my life was all about the next step - about fighting cancer. About winning. About doing anything it took to make sure I could get my life back.
And now, I have my life back, don't I?
Or maybe not.
I feel lost.
First of all, I'm frustrated by the lingering fatigue and pain. I'm absolutely exhausted everyday and managing even the smallest task is tiring and painful. Everything in my body aches and I have to still take pain pills to sleep at night. It's been 3 weeks since my last chemo - I know that's not a long time - but, in my mind, I thought I'd be starting to LIVE again. Starting to clean my house and make gourmet dinners and manage going to the mall and the gym. All the stuff I used to do and loved.
Instead, my family has eaten fast food for 3 of the last 5 days for dinner, all I do is drive by the gym, the house is close to being featured on Hoarders and shopping doesn't even sound fun! <gasp> I have meals planned and I shopped for food but I'm so exhausted (after a full day of napping!) that I can't even gather enough energy to cook the food. Plus my legs hurt, my back hurts, my arms hurt. Everything hurts and moving makes it worse. I feel like I've worked out all day, everyday. I can manage to clean the kitchen almost everyday but this burst of energy is followed by a nap. I've taken to window shopping online. The closest I've gotten to the gym is to buy cupcakes at the bakery next door.
My physical therapist suggested that going back to the gym might help alleviate some of the pain. I don't see how riding the stationary bike (which is painful) or walking the treadmill (painful!) is going to create less pain. I really like my physical therapist but I think she might secretly be trying to kill me.
Not only am I struggling physically but I'm struggling emotionally as well.
I AM happy chemo is over. I AM happy that I'm not putting poison in my body every 3 weeks anymore. I'm THRILLED in fact.
But - I can't shake the feeling of "Is that it?" After 6 months of constant conversations and thoughts about my care - everything focused on me having breast cancer and planning the next step - it just ends. You go to your last chemo and that's it. You make your next appointment to see the oncologist for a month later and that's it. And then you are left with...nothing. Nothing to do. Nothing to do but wait. Wait for what? Wait for the cancer to come back? Wait for check-ups every 12 weeks? I don't know. I've been so busy just surviving the past 6 months that to have my whole life spread out before me now seems so overwhelming.
Cancer changes a person. Anyone can understand that. I know it's changed me. Though, I've had cancer twice now and am done "changing" thankyouverymuch. Maybe I just don't know who I really am anymore. In a way I want my old life back, but then, I know I'll never be the same. So where do I go from here? How do I transition from "having breast cancer" to "breast cancer survivor?" Maybe it's not as easy as just finishing chemo. Maybe there's more to the process and I'm missing something?
But I don't know yet what it is.
I should be elated that I'm finished! I should throw a party! Actually, I did throw a party with my friends and it was fun! But, I feel like I should be happy!
And I AM happy! I really am.
But....
That happiness comes with a lot of other feelings that I can't quite explain. I keep asking myself if I'm depressed but I don't think that depression really sums it up. I'm angry and confused and sad. And probably about 100 other emotions that I can't even quite identify. Every emotion that I didn't have time for the last 6 months has now crept to the surface.
When I found out that I had breast cancer back in May, I was devastated. I cried a lot through the process of being diagnosed, hearing about my options and finally choosing a double mastectomy. The whole thing completely challenged everything I have in me. I had the mastectomy in July, healing took 7 weeks during which time I found out that I had to start chemo right away. I started chemo, lost my hair, lost my energy, lost a lot. During those 6 months of my life (from diagnosis through chemo), my life was all about the next step - about fighting cancer. About winning. About doing anything it took to make sure I could get my life back.
And now, I have my life back, don't I?
Or maybe not.
I feel lost.
First of all, I'm frustrated by the lingering fatigue and pain. I'm absolutely exhausted everyday and managing even the smallest task is tiring and painful. Everything in my body aches and I have to still take pain pills to sleep at night. It's been 3 weeks since my last chemo - I know that's not a long time - but, in my mind, I thought I'd be starting to LIVE again. Starting to clean my house and make gourmet dinners and manage going to the mall and the gym. All the stuff I used to do and loved.
Instead, my family has eaten fast food for 3 of the last 5 days for dinner, all I do is drive by the gym, the house is close to being featured on Hoarders and shopping doesn't even sound fun! <gasp> I have meals planned and I shopped for food but I'm so exhausted (after a full day of napping!) that I can't even gather enough energy to cook the food. Plus my legs hurt, my back hurts, my arms hurt. Everything hurts and moving makes it worse. I feel like I've worked out all day, everyday. I can manage to clean the kitchen almost everyday but this burst of energy is followed by a nap. I've taken to window shopping online. The closest I've gotten to the gym is to buy cupcakes at the bakery next door.
My physical therapist suggested that going back to the gym might help alleviate some of the pain. I don't see how riding the stationary bike (which is painful) or walking the treadmill (painful!) is going to create less pain. I really like my physical therapist but I think she might secretly be trying to kill me.
Not only am I struggling physically but I'm struggling emotionally as well.
I AM happy chemo is over. I AM happy that I'm not putting poison in my body every 3 weeks anymore. I'm THRILLED in fact.
But - I can't shake the feeling of "Is that it?" After 6 months of constant conversations and thoughts about my care - everything focused on me having breast cancer and planning the next step - it just ends. You go to your last chemo and that's it. You make your next appointment to see the oncologist for a month later and that's it. And then you are left with...nothing. Nothing to do. Nothing to do but wait. Wait for what? Wait for the cancer to come back? Wait for check-ups every 12 weeks? I don't know. I've been so busy just surviving the past 6 months that to have my whole life spread out before me now seems so overwhelming.
Cancer changes a person. Anyone can understand that. I know it's changed me. Though, I've had cancer twice now and am done "changing" thankyouverymuch. Maybe I just don't know who I really am anymore. In a way I want my old life back, but then, I know I'll never be the same. So where do I go from here? How do I transition from "having breast cancer" to "breast cancer survivor?" Maybe it's not as easy as just finishing chemo. Maybe there's more to the process and I'm missing something?
But I don't know yet what it is.
Wednesday, November 16, 2011
Chemo Side Effects
Before I started chemo, I was given a big three ring binder at the Cancer Center with special tabs for all kind of things I would need to know about like important numbers to call, radiation, etc. I was also given a large 61 page book titled "Chemotherapy and You."
I like how it uses a feel-good title like "Chemotherapy and You" like chemo and I are of one. Like we are dating. Like it's a beautiful relationship. The cover even has a lovely landscape picture that has nothing to do with chemotherapy except that you wish you were THERE instead of at the Cancer Center having chemo maybe.
The majority of the book, from pages 14-51 are all about the side effects you may experience during chemotherapy. I remember I read the book bravely before I started chemo and I hoped that most wouldn't happen to me. They always write about the worst case scenarios, right?
That may be, but now that I'm finished with chemo, I went back to review some of the listed side effects and try to calculate how many I'd suffered - it wasn't pretty.
Here is a list, in alphabetical order like the book, of the side effects listed:
ANEMIA - YES
I've been struggling with anemia for a while now, so it's not a surprise really that this would affect me. I did have a good iron infusion right before the double mastectomy to boost my system and I'm sure it helped. But, now, after surgery and four rounds of chemo, I'm anemic again. My oncologist says it's not too bad yet, we'll wait and see what happens as I get further out.
APPETITE CHANGES - YES
I was one of the lucky ones in that my appetite didn't change drastically. I've heard stories of people that really can't eat much at all during chemo and I didn't really have that experience. Each time after a dose, I wouldn't have much appetite for a week or so (mostly due to nausea) but it didn't last. After that, I was back to normal and gleefully stuffing my face with anything I could find. I had really hoped I might lose some weight (and I did every time after chemo but I gained it back each time). I mean, if you are going to have cancer, something good should come of it! Sadly, whenever "weight loss" is listed as a side effect - it never seems to happen for me. Damn.
BLEEDING - YES
This section talks mostly about bleeding gums and excessive bleeding from cuts which are not issues I had. However, it does also talk about nose bleeds and excessive monthly bleeding for women, both which have been problems for me. I really don't think you want any more details so I'll just leave it at that.
CONSTIPATION - OMG YES
I didn't have issues with constipation until the third round of chemo but then it hit with a vengeance. It was so bad that I, once, considered calling 911 in the middle of the night. But, what do you tell 911? "Um, Hi, I have a non-pooping emergency..." This is a small town, I don't want to be known for that.
DIARRHEA - YES
If I didn't have constipation, I had diarrhea. It was lots of fun each day guessing which I would get. Made life interesting.
FATIGUE - YES
Zzzzzzzzzzzz....oh, what were you saying?
Yes, the fatigue has been overwhelming to say the least. I still sleep much more than a normal person should need to - sometimes 12 hours a day or more. I'm sure this sounds heavenly to some people, but it also means I don't get much accomplished in a day. If I can manage to keep everyone alive and fed in a day, I'm doing well.
HAIR LOSS - YES
No surprise here really except that I lost much more hair over my entire body than I thought I would! I've even lost hair from my nose. I know this because now anything in my nose just comes running right out without abandon! Ugh!
INFECTION - NO
Though I did run a fever (a main sign of infection) and was hospitalized, it was determined that it was a side effect to the chemo and not an infection. *Whew*
INFERTILITY - UNKNOWN
And I have no plans to try to get pregnant to find out. Sorry.
MOUTH AND THROAT CHANGES - YES
But, really, I didn't have much - a few mouth sores here and there. I was "lucky."
NAUSEA AND VOMITING - OH YES
I "only" threw up twice. That's not too bad. But the nausea was really debilitating at times. I had THREE medications to control nausea though, and they worked well. Laying in bed concentrating on not moving a muscle worked well too.
NERVOUS SYSTEM CHANGES - YES AND OUCH
This is an issue I've only been dealing with since my last treatment. My hands fall asleep! It only happens in the middle of the night. I wake up and my hand is asleep. I think it's usually my right hand but I'm too interested in making the tingling sensation stop and getting back to sleep to really keep track. It's really annoying.
PAIN - YES AND OUCH AGAIN
One of the main side effects that I've had to deal with this whole treatment has been the aches and pains in my body. And now that I've been through all four, it's gotten much worse. I'm in quite a bit of pain. My legs are the worst. They just ACHE! This makes walking a chore but also quite humorous, I'm sure. I feel like I'm 80 years old. I feel like I need a cane. I feel like I've worked out all day long. I've heard this can last for months - that's scary.
Another aspect of this is the lightning bolt sensation. I will be sitting around, minding my own business, when suddenly I get a shock of pain. It's like lightning shocks. It is incredibly painful and not at all fun. I think I'd rather get struck by lightning. Well, maybe not - but I do think I know what it feels like now. Luckily, the lightning bolt sensation was worst after the first treatment and has seemed to calm down now a bit - but I'm always waiting for another one...
Also one of the main problems that I've had manage during my chemotherapy has been the horrible headaches. I'm prone to headaches anyway and I've had migraines in the past so this shouldn't be a huge surprise. But, I started having to take pain medication to manage the headaches. Now, nearly 3 weeks after my last treatment, the headaches are subsiding.
SEXUAL CHANGES - YES
As much as I know all my readers like to read about the details of my sex life, I think I've covered this already so I'll spare my mother and brother the pain of having to reread it.
SKIN AND NAIL CHANGES - NOPE!
Finally! One that I missed! Ha!
URINARY, KIDNEY AND BLADDER CHANGES - YES
I was lucky to have only had one urinary tract infection. I caught it early.
So, for those of you keeping track, I had 13 of 16 listed side effects. That's 81%! I get a B for Chemo! Woot!
Too bad it doesn't work that way! Unfortunately, when they gave me this handy chemo guide, I never imagined I would have 81% of the side effects listed! In fact the book even says, "You may have a lot of side effects, some, or none at all." (Chemotherapy and You, page 14) NONE AT ALL?! I wanted THAT to be ME! But, of course, everyone that knows me knows that I don't do things half-way, including chemo. Lucky me!
The majority of the book, from pages 14-51 are all about the side effects you may experience during chemotherapy. I remember I read the book bravely before I started chemo and I hoped that most wouldn't happen to me. They always write about the worst case scenarios, right?
That may be, but now that I'm finished with chemo, I went back to review some of the listed side effects and try to calculate how many I'd suffered - it wasn't pretty.
Here is a list, in alphabetical order like the book, of the side effects listed:
ANEMIA - YES
I've been struggling with anemia for a while now, so it's not a surprise really that this would affect me. I did have a good iron infusion right before the double mastectomy to boost my system and I'm sure it helped. But, now, after surgery and four rounds of chemo, I'm anemic again. My oncologist says it's not too bad yet, we'll wait and see what happens as I get further out.
APPETITE CHANGES - YES
I was one of the lucky ones in that my appetite didn't change drastically. I've heard stories of people that really can't eat much at all during chemo and I didn't really have that experience. Each time after a dose, I wouldn't have much appetite for a week or so (mostly due to nausea) but it didn't last. After that, I was back to normal and gleefully stuffing my face with anything I could find. I had really hoped I might lose some weight (and I did every time after chemo but I gained it back each time). I mean, if you are going to have cancer, something good should come of it! Sadly, whenever "weight loss" is listed as a side effect - it never seems to happen for me. Damn.
BLEEDING - YES
This section talks mostly about bleeding gums and excessive bleeding from cuts which are not issues I had. However, it does also talk about nose bleeds and excessive monthly bleeding for women, both which have been problems for me. I really don't think you want any more details so I'll just leave it at that.
CONSTIPATION - OMG YES
I didn't have issues with constipation until the third round of chemo but then it hit with a vengeance. It was so bad that I, once, considered calling 911 in the middle of the night. But, what do you tell 911? "Um, Hi, I have a non-pooping emergency..." This is a small town, I don't want to be known for that.
DIARRHEA - YES
If I didn't have constipation, I had diarrhea. It was lots of fun each day guessing which I would get. Made life interesting.
FATIGUE - YES
Zzzzzzzzzzzz....oh, what were you saying?
Yes, the fatigue has been overwhelming to say the least. I still sleep much more than a normal person should need to - sometimes 12 hours a day or more. I'm sure this sounds heavenly to some people, but it also means I don't get much accomplished in a day. If I can manage to keep everyone alive and fed in a day, I'm doing well.
HAIR LOSS - YES
No surprise here really except that I lost much more hair over my entire body than I thought I would! I've even lost hair from my nose. I know this because now anything in my nose just comes running right out without abandon! Ugh!
INFECTION - NO
Though I did run a fever (a main sign of infection) and was hospitalized, it was determined that it was a side effect to the chemo and not an infection. *Whew*
INFERTILITY - UNKNOWN
And I have no plans to try to get pregnant to find out. Sorry.
MOUTH AND THROAT CHANGES - YES
But, really, I didn't have much - a few mouth sores here and there. I was "lucky."
NAUSEA AND VOMITING - OH YES
I "only" threw up twice. That's not too bad. But the nausea was really debilitating at times. I had THREE medications to control nausea though, and they worked well. Laying in bed concentrating on not moving a muscle worked well too.
NERVOUS SYSTEM CHANGES - YES AND OUCH
This is an issue I've only been dealing with since my last treatment. My hands fall asleep! It only happens in the middle of the night. I wake up and my hand is asleep. I think it's usually my right hand but I'm too interested in making the tingling sensation stop and getting back to sleep to really keep track. It's really annoying.
PAIN - YES AND OUCH AGAIN
One of the main side effects that I've had to deal with this whole treatment has been the aches and pains in my body. And now that I've been through all four, it's gotten much worse. I'm in quite a bit of pain. My legs are the worst. They just ACHE! This makes walking a chore but also quite humorous, I'm sure. I feel like I'm 80 years old. I feel like I need a cane. I feel like I've worked out all day long. I've heard this can last for months - that's scary.
Also one of the main problems that I've had manage during my chemotherapy has been the horrible headaches. I'm prone to headaches anyway and I've had migraines in the past so this shouldn't be a huge surprise. But, I started having to take pain medication to manage the headaches. Now, nearly 3 weeks after my last treatment, the headaches are subsiding.
SEXUAL CHANGES - YES
As much as I know all my readers like to read about the details of my sex life, I think I've covered this already so I'll spare my mother and brother the pain of having to reread it.
SKIN AND NAIL CHANGES - NOPE!
Finally! One that I missed! Ha!
URINARY, KIDNEY AND BLADDER CHANGES - YES
I was lucky to have only had one urinary tract infection. I caught it early.
So, for those of you keeping track, I had 13 of 16 listed side effects. That's 81%! I get a B for Chemo! Woot!
Too bad it doesn't work that way! Unfortunately, when they gave me this handy chemo guide, I never imagined I would have 81% of the side effects listed! In fact the book even says, "You may have a lot of side effects, some, or none at all." (Chemotherapy and You, page 14) NONE AT ALL?! I wanted THAT to be ME! But, of course, everyone that knows me knows that I don't do things half-way, including chemo. Lucky me!
Wednesday, November 2, 2011
Hospitalized!
At almost exactly 24 hours after my last chemo, I started running a fever. I always know when I have a fever. I get chills and I just shiver uncontrollably. I called my nurse/husband in to take my fever and sure enough it was 99.4. Not officially a fever, but definitely creeping up.
I know that a fever is one of the main things to look for after chemo - it's a huge risk and can be potentially very dangerous. I called the Cancer Center right away. They told me to keep an eye on it and take Tylenol if it got over 100.5. I instructed the nurse to take my temperature every 30 minutes.
We watched the fever creep higher and higher and the chills got worse and my headache increased. The fever hit 100.8 at 4:55 p.m. I called the Cancer Center again, knowing they were about to close for the weekend (though there is always a doctor on call, of course) and they said take the Tylenol and if it didn't come down in 45 minutes, go to the ER.
I had already taken the Tylenol so now all we could do was wait. We took my temperature every 10-15 minutes and watched the fever get higher. At an hour later, it hit 102. It was the Friday night before Halloween and the kids both had activities planned with both friends and were waiting to be picked up. Greg quickly made arrangements for the kids to stay over at our friend's house and I tried to manage costumes and packing overnight bags from my feverish bed.
Once the kids were picked up by 6:25, Greg helped me get dressed and we headed to the Emergency Room. I don't remember the drive there at all - there are a lot of things I don't remember from the next 24 hours or so. We made it to the ER and walked in to be checked in. Things moved really fast from there. Telling them you have cancer and are running a fever of 102 gets you a lot of immediate attention. We barely gave any information before they came to get me in a wheelchair...I think they had asked if I could walk but I couldn't make it anymore so they brought a wheelchair fast.
I don't remember a lot of details from the emergency room, there were a lot of nurses and doctors in and out and a lot of questions. A lot of the same questions over and over. They quickly started an IV in my port and there was a lot of taking of blood and giving of drugs. They were monitoring my blood pressure closely and it was very low. So low, in fact, that it kept setting off the alarms on the machine. I remember one reading was 59/33 - that's the lowest I remember seeing. I remember looking at my husband and thinking he looked worried. I remember a lot of people walking by and walking in and I remember how thankful I was when they finally gave me a thin sheet (I was freezing because of the fever). At one point, I scarfed down a turkey sandwich I was given - I hadn't eaten all day due to nausea but I was finally starving.
I'm not sure how long exactly we were there, 4-5 hours I think, but they pretty quickly determined that I wasn't going home. A guy appeared to take me to my room. I don't know how we ended up there (on the 7th floor - the oncology floor) but we took approximately 13 elevators and went down 35 brightly lit hallways. My numbers may be a little off, but I'm close. If there had been a fire at any time during my stay, I would have been in big trouble because I had absolutely no idea where I was or how I got there. This hospital has recently been remodeled and I was told that I was in the "old tower." This meant nothing to me.
I made it to my new bed and settled in. I met my nurse for the night, his name was Ben.
And then...it happened.
My bed MOVED.
I mean, really, it MOVED. I was sure I was imagining things. They had put a lot of drugs in my IV, I had a high fever, my blood pressure was low...I was really out of it and now I thought the bed was moving. Three days before Halloween - a haunted bed.
And then it happened again. The bed moved. I was a little more alert that time and waited to see if it would do it again. And it did!
That's when I said to my husband, "This bed is MOVING!"
He looked at me like he often does - that look that says he thinks I'm a crazy person. I insisted that the bed was moving and we both waited and watched until it did it again. This was not okay! It was really annoying. About every two minutes (so right when you got comfortable), the bed would shift quite drastically into a different position. We called the nurse in and he confirmed that the bed moves. It's for people who can't move on their own so they don't get bed sores or blood clots.
What a great invention! Now, turn it off! It was obnoxious.
Well, it doesn't TURN OFF. The only way to stop it is to unplug the bed which means you can't adjust it at all. What good is that? The only cool thing about a hospital bed is that you can do whatever you want to it - put your head practically on the ground and your feet in the air if that's what floats your boat. What is the point if it doesn't do that?!
They brought me a new bed. Well, new to me - but older style. I didn't care, I was just thankful it didn't MOVE unless I pushed the button.
Sometime soon after, my husband left for the night and I settled in. I really don't remember anything - I slept on and off, they woke me up constantly to check vitals and give medications. When morning came, I still felt really sick and out of it. I was still running a fever but it was much lower. My blood pressure was coming up but still low.
A couple of different doctors came to see me. My blood work was looking good but they were still testing. They were keeping me for another day at least.
I settled in for a long day ahead. I didn't feel like doing much, mostly I slept. I did manage to find two really bad movies on the Lifetime channel. Two days before Halloween, they were horror movies of course. Thankfully neither of them were about haunted hospitals.
My husband brought our daughter to see me (our son was at a sleepover). When it was time to leave, she cried. I almost cried too.
I slept most of the night and woke up the next morning feeling....GROSS! A sure sign you are feeling better is when you start to realize that you really need a shower! Blech! Luckily, my room had a shower! I asked for some towels and hopped in. It felt so good.
My nurse told me she heard a rumor that I was going home. The doctor eventually, finally, made it in and all of my blood work looked good. The diagnosis was that I'd had a severe reaction to the chemo. Thankfully, it happened on the last dose so we didn't have to worry about next time. It was over.
While I was waiting to be released, the hospital nutritionist came to see me. I had been referred by the nurses for not eating. I don't eat much in the days after chemo because I'm pretty sick to my stomach. She obviously took one look at me and decided this was a waste of her time and left. Anyone that knows me knows that I'm not starving by any means.
It took forever to get me released. Greg and the kids came to pick me up and we waited a long time for the paperwork. But, finally, it was time to go and I was wheeled down to the exit. So thankful to go home and so thankful that I was okay.
And most of all thankful that it really is over.
People Outside of my Family Who've Seen my "Boobs": 43
I know that a fever is one of the main things to look for after chemo - it's a huge risk and can be potentially very dangerous. I called the Cancer Center right away. They told me to keep an eye on it and take Tylenol if it got over 100.5. I instructed the nurse to take my temperature every 30 minutes.
We watched the fever creep higher and higher and the chills got worse and my headache increased. The fever hit 100.8 at 4:55 p.m. I called the Cancer Center again, knowing they were about to close for the weekend (though there is always a doctor on call, of course) and they said take the Tylenol and if it didn't come down in 45 minutes, go to the ER.
I had already taken the Tylenol so now all we could do was wait. We took my temperature every 10-15 minutes and watched the fever get higher. At an hour later, it hit 102. It was the Friday night before Halloween and the kids both had activities planned with both friends and were waiting to be picked up. Greg quickly made arrangements for the kids to stay over at our friend's house and I tried to manage costumes and packing overnight bags from my feverish bed.
Once the kids were picked up by 6:25, Greg helped me get dressed and we headed to the Emergency Room. I don't remember the drive there at all - there are a lot of things I don't remember from the next 24 hours or so. We made it to the ER and walked in to be checked in. Things moved really fast from there. Telling them you have cancer and are running a fever of 102 gets you a lot of immediate attention. We barely gave any information before they came to get me in a wheelchair...I think they had asked if I could walk but I couldn't make it anymore so they brought a wheelchair fast.
I don't remember a lot of details from the emergency room, there were a lot of nurses and doctors in and out and a lot of questions. A lot of the same questions over and over. They quickly started an IV in my port and there was a lot of taking of blood and giving of drugs. They were monitoring my blood pressure closely and it was very low. So low, in fact, that it kept setting off the alarms on the machine. I remember one reading was 59/33 - that's the lowest I remember seeing. I remember looking at my husband and thinking he looked worried. I remember a lot of people walking by and walking in and I remember how thankful I was when they finally gave me a thin sheet (I was freezing because of the fever). At one point, I scarfed down a turkey sandwich I was given - I hadn't eaten all day due to nausea but I was finally starving.
I'm not sure how long exactly we were there, 4-5 hours I think, but they pretty quickly determined that I wasn't going home. A guy appeared to take me to my room. I don't know how we ended up there (on the 7th floor - the oncology floor) but we took approximately 13 elevators and went down 35 brightly lit hallways. My numbers may be a little off, but I'm close. If there had been a fire at any time during my stay, I would have been in big trouble because I had absolutely no idea where I was or how I got there. This hospital has recently been remodeled and I was told that I was in the "old tower." This meant nothing to me.
I made it to my new bed and settled in. I met my nurse for the night, his name was Ben.
And then...it happened.
My bed MOVED.
I mean, really, it MOVED. I was sure I was imagining things. They had put a lot of drugs in my IV, I had a high fever, my blood pressure was low...I was really out of it and now I thought the bed was moving. Three days before Halloween - a haunted bed.
And then it happened again. The bed moved. I was a little more alert that time and waited to see if it would do it again. And it did!
That's when I said to my husband, "This bed is MOVING!"
He looked at me like he often does - that look that says he thinks I'm a crazy person. I insisted that the bed was moving and we both waited and watched until it did it again. This was not okay! It was really annoying. About every two minutes (so right when you got comfortable), the bed would shift quite drastically into a different position. We called the nurse in and he confirmed that the bed moves. It's for people who can't move on their own so they don't get bed sores or blood clots.
What a great invention! Now, turn it off! It was obnoxious.
 |
| A hospital bed |
They brought me a new bed. Well, new to me - but older style. I didn't care, I was just thankful it didn't MOVE unless I pushed the button.
Sometime soon after, my husband left for the night and I settled in. I really don't remember anything - I slept on and off, they woke me up constantly to check vitals and give medications. When morning came, I still felt really sick and out of it. I was still running a fever but it was much lower. My blood pressure was coming up but still low.
A couple of different doctors came to see me. My blood work was looking good but they were still testing. They were keeping me for another day at least.
 |
| One of the movies I watched - Possessing Piper. It was dumb yet I watched the whole thing. |
My husband brought our daughter to see me (our son was at a sleepover). When it was time to leave, she cried. I almost cried too.
I slept most of the night and woke up the next morning feeling....GROSS! A sure sign you are feeling better is when you start to realize that you really need a shower! Blech! Luckily, my room had a shower! I asked for some towels and hopped in. It felt so good.
My nurse told me she heard a rumor that I was going home. The doctor eventually, finally, made it in and all of my blood work looked good. The diagnosis was that I'd had a severe reaction to the chemo. Thankfully, it happened on the last dose so we didn't have to worry about next time. It was over.
While I was waiting to be released, the hospital nutritionist came to see me. I had been referred by the nurses for not eating. I don't eat much in the days after chemo because I'm pretty sick to my stomach. She obviously took one look at me and decided this was a waste of her time and left. Anyone that knows me knows that I'm not starving by any means.
It took forever to get me released. Greg and the kids came to pick me up and we waited a long time for the paperwork. But, finally, it was time to go and I was wheeled down to the exit. So thankful to go home and so thankful that I was okay.
And most of all thankful that it really is over.
People Outside of my Family Who've Seen my "Boobs": 43
The Stalkers
I'm getting a lot more recognition for my blog - and now strangers are actually coming up to me in random places to "meet" me. Thankfully, they've all been so nice and normal and I never had the urge to scream "STRANGER DANGER" like they teach you in elementary school.
The first encounter was earlier this week when a lady came up to me in the local Bartells and asked, "Are you Laura?" I said, "Yes" but instantly regretted it because, what do I know?. She could be a psycho ax murderer! Alas, she's not - she's Rebecca* and we have many mutual friends and I've heard a lot of nice things about her already (and no one mentioned that she even owns an ax). I've been hoping to meet her and I'm so glad she stalked me through the drugstore (she admitted it) by peeking over the aisles and following me before getting up the nerve to come up to me. She said she follows my blog and LOVES it and that she thinks of me as like a famous rock star! I'm just glad she didn't ask me to sing...that would have frightened her away for sure. She said she almost felt like asking for my autograph - well, HA, little does she know I don't give that out for FREE! Okay, who am I kidding - it's free. Anyway, Rebecca and I had such a great time chatting and she is just as nice as everyone says she is - and I'm totally not saying that because she'll read this! And it wasn't at ALL weird that she was holding a massive can of hair spray that she claimed was for a kid art project. Regardless, it was super fun having my first stalker!
The next day, I went to Starbucks and the girl there behind the counter said, "Hold On!" and ran in the back. I didn't think much of it, maybe she had to pee? I don't question these things. But, she came out with an awesome card for me! I was SHOCKED! It was signed by a bunch of the ladies that work there and it was for ME! I had told one of the ladies that works there a couple of weeks ago that I have cancer and she told me they do the Relay every year. She must have told others and someone got a card and a bunch of people signed it. It was really so nice and so touching. And then the new store manager came out and introduced herself to me and said she'd heard about me. This proves that #1. The people there are so nice and generous and #2. I spend way too much time there! I mean, really, how often do you have to go to Starbucks before they start giving you cards?!
The next day was chemo day and I had TWO stalkers in one day!
First of all, the lady that I sat by last time at my 3rd chemo treatment sought me out to say hello. She found me in my private room. This was my 4th treatment and her 2nd. She had cut her hair short and it was falling out but she was wearing a hat and looked darling in it. She said she was doing well and not too tired. She had a bad reaction to the initial chemo but they had brought her back the next week (the time when I met her) and changed the drugs and she had no bad reactions to those. I was so happy to see her because the first time she was feeling pretty ambivalent about the chemo, I think, and I was just so happy to see her there again getting treatment and not giving up. I made sure to find her (she had a private room too!!) and say goodbye before I left. It didn't feel like a permanent goodbye - I think I'll see her again soon.
And then, right as I was finishing up, another lady stopped by. Her name is Jennifer* and we have some mutual friends as well. She heard that I was there and came to find me. She said she loves this blog and she laughs so hard AND that it has really helped her!! Today was Chemo #3 for her so she's just behind me and she loves the blog because she kind of knows what to expect next. I love love love that I'm actually HELPING someone! I really only started this blog to help ME and I didn't even know if I'd stick with it - I'm kind of flaky that way. But, in part because of all the positive feedback I've gotten, I did stick with it and NOW people are telling me that it helps them! I'm speechless...well, not really, but I'm really excited! I liked Jennifer instantly, and not just because she was very complimentary. Haha. She told me that from reading my blog, she actually had a shaving party on Day 14 after her first chemo because she knew that it was going to fall out. She invited friends over and shaved her head!! I was amazed, I just thought that was so brave. It's pretty incredible how brave we become sometimes when we have to - when there's no other choice but to be brave. I forgot to tell my new friend, Jennifer, how cute I thought her hat is but maybe she'll read it here.
I've decided that it's kind of nice to have stalkers. Nice stalkers that is. I feel like I'm doing something worthwhile. Something important.
Autographs are still free...for now.
* - Names have NOT been changed to protect the innocent, sorry.
The next day, I went to Starbucks and the girl there behind the counter said, "Hold On!" and ran in the back. I didn't think much of it, maybe she had to pee? I don't question these things. But, she came out with an awesome card for me! I was SHOCKED! It was signed by a bunch of the ladies that work there and it was for ME! I had told one of the ladies that works there a couple of weeks ago that I have cancer and she told me they do the Relay every year. She must have told others and someone got a card and a bunch of people signed it. It was really so nice and so touching. And then the new store manager came out and introduced herself to me and said she'd heard about me. This proves that #1. The people there are so nice and generous and #2. I spend way too much time there! I mean, really, how often do you have to go to Starbucks before they start giving you cards?!
The next day was chemo day and I had TWO stalkers in one day!
First of all, the lady that I sat by last time at my 3rd chemo treatment sought me out to say hello. She found me in my private room. This was my 4th treatment and her 2nd. She had cut her hair short and it was falling out but she was wearing a hat and looked darling in it. She said she was doing well and not too tired. She had a bad reaction to the initial chemo but they had brought her back the next week (the time when I met her) and changed the drugs and she had no bad reactions to those. I was so happy to see her because the first time she was feeling pretty ambivalent about the chemo, I think, and I was just so happy to see her there again getting treatment and not giving up. I made sure to find her (she had a private room too!!) and say goodbye before I left. It didn't feel like a permanent goodbye - I think I'll see her again soon.
And then, right as I was finishing up, another lady stopped by. Her name is Jennifer* and we have some mutual friends as well. She heard that I was there and came to find me. She said she loves this blog and she laughs so hard AND that it has really helped her!! Today was Chemo #3 for her so she's just behind me and she loves the blog because she kind of knows what to expect next. I love love love that I'm actually HELPING someone! I really only started this blog to help ME and I didn't even know if I'd stick with it - I'm kind of flaky that way. But, in part because of all the positive feedback I've gotten, I did stick with it and NOW people are telling me that it helps them! I'm speechless...well, not really, but I'm really excited! I liked Jennifer instantly, and not just because she was very complimentary. Haha. She told me that from reading my blog, she actually had a shaving party on Day 14 after her first chemo because she knew that it was going to fall out. She invited friends over and shaved her head!! I was amazed, I just thought that was so brave. It's pretty incredible how brave we become sometimes when we have to - when there's no other choice but to be brave. I forgot to tell my new friend, Jennifer, how cute I thought her hat is but maybe she'll read it here.
I've decided that it's kind of nice to have stalkers. Nice stalkers that is. I feel like I'm doing something worthwhile. Something important.
Autographs are still free...for now.
* - Names have NOT been changed to protect the innocent, sorry.
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