If I've got time to burn (about 5 hours) at chemo, there are some things I'd really like to be able to do....that you just can't. Either it's inappropriate, a public WiFi, or it might come out incorrectly due to the loopiness caused by the drugs. But these would save me some time at home and help me de-stress. Life is just not fair.
1. I'd really like a manicure and a pedicure. (I wonder if it's possible to have a manicurist make a "house call?" Eh, I just don't think I could get away with her being my "support person" for the day.)
2. I'd like to pay my bills, online. However, I don't know what other deviants are receiving chemo and also using the public WiFi, at my oncologists', so I can't.
3. Work out. It just seems like such a waste-I've got all time that I there, trying to get healthier, right? I see how my Walk Away the Pounds DVD might rip out the IV from either me or a neighbor, but one of my tinkly-music-relaxing Gaiam Yoga tapes should cut. I just won't do a downward dog.
4. Work on my homeowner association's quarterly newsletter. It's my job on the board. I tried writing last week during chemo. Again, the drugs interfere. I had to stop when I realized I had consisently reversed some letters. I don't think my neighbors would have appreciated the reminder to "dick pup their dog's doop."
Tuesday, January 26, 2010
Hair Paranoia
I'm getting really paranoid about losing my hair. It hasn't happened (yet-oh, please Goddess, let me be one of the lucky, hairy ones.) but I've actually been losing sleep over it.
Take Sunday, for instance. You'd think I'd be absolutely exhausted from chemo on Friday and still fighting off bronchitis, and taking care of the sick (and very snotty) kidlette. Nope. CJ and I watched the Vikings-Saints game (Go Saints!) and I made spicy guacamole and my favorite dry-rub ribs. With lemon bars.
I found out very quickly that I will have to cut back on the spicy foods. Apparently, the chemo-body responds differently to spice; my skin started to hurt all over, even my eyelids. And my scalp. I became convinced that I was about to lose my hair. Every time I started to fall asleep, I'd start thinking that I felt it falling out and I'd wake up. I had maybe 4 hours of sleep, tops.
This just drives home the point of how vain I am; other women in my support group worry about dying and I worry about temporarily looking like Charlie Brown.
Take Sunday, for instance. You'd think I'd be absolutely exhausted from chemo on Friday and still fighting off bronchitis, and taking care of the sick (and very snotty) kidlette. Nope. CJ and I watched the Vikings-Saints game (Go Saints!) and I made spicy guacamole and my favorite dry-rub ribs. With lemon bars.
I found out very quickly that I will have to cut back on the spicy foods. Apparently, the chemo-body responds differently to spice; my skin started to hurt all over, even my eyelids. And my scalp. I became convinced that I was about to lose my hair. Every time I started to fall asleep, I'd start thinking that I felt it falling out and I'd wake up. I had maybe 4 hours of sleep, tops.
This just drives home the point of how vain I am; other women in my support group worry about dying and I worry about temporarily looking like Charlie Brown.
Saturday, January 23, 2010
I'd Like to Start a Poker Group at Chemo but....
I'm getting bored during chemo and there seems to be about 4 other folks my age at the Chemo Infusion Suite on Fridays so I thought I might start a card group. Unfortunately, I realized that:
A. I don't know how to play poker. This is probably a reaction to CJ's love and devotion to watching the World Poker Tour on ESPN. (In fact, the only thing I'm certain I know about poker is that many players like to wear sunglasses during the game.)
Which led me to the second thought-
B. The card games I'm most familiar with are children's. (Anyone up for Go Fish or Old Maid?)
C. I also don't know how to play Bridge or Solitaire.
So where does this leave me?
DRINKING GAMES! Which I learned during college.
I can play Asshole or Up the River, Down the River. I'm trying to figure out how to adapt those games for chemo but haven't come up with any ideas yet...
A. I don't know how to play poker. This is probably a reaction to CJ's love and devotion to watching the World Poker Tour on ESPN. (In fact, the only thing I'm certain I know about poker is that many players like to wear sunglasses during the game.)
Which led me to the second thought-
B. The card games I'm most familiar with are children's. (Anyone up for Go Fish or Old Maid?)
C. I also don't know how to play Bridge or Solitaire.
So where does this leave me?
DRINKING GAMES! Which I learned during college.
I can play Asshole or Up the River, Down the River. I'm trying to figure out how to adapt those games for chemo but haven't come up with any ideas yet...
Friday, January 22, 2010
"The Other Patients Must Think I Slipped the Nurse a $20 for the Private Chemo Room"
Well, clearly I spoke too soon about being well. I have bronchitis. I was developing a sore throat last Friday before chemo and I think massive amounts of adrenaline (in preparation for my 36th birthday dinner party) convinced my body not to get really sick until Sunday.
Which it did. I spent two days with a hacking, dry cough, in bed with my industrial strength humidifier going full blast. (I was so tired, I don't remember most of Sunday.) CJ and my MIL, Betsy, took care of everything. Thank you SOOOOOO MUCH!!!
I knew it was bronchitis right away. Years teaching, you pick up everything. (Except the chicken pox. But that's because I had it back in 1982. You know, before the chicken pox vaccination days, when you just caught the darn thing and got to spend two weeks at home?) Anyhoo, dry, unproductive cough = bronchitis.
Unfortunately, bronchitis + chemo patient = calling the oncologist. In case your white blood cells aren't up to the task and you die. This upsets the doctor. So, you call (because you are a good little patient, not because you are really worried) and the oncologist's nurse wants you to come in right away. In my case, I called from the road, when I was dropping off Betsy down outside of Fredericksburg, Virginia. (About an hour and half from the DC metro area.)
After I told the nuse that:
1. I was in Fredericksburg at that time (2pm, Tuesday)
2. And I had my 3 year-old with me and there was no one I could drop her off with if I raced back to DC to see Dr. Dendalouri
the nuse said, "Oh, crap."
Yeah, sorry. An appointment that day wasn't happening. An anti-biotic prescription was called in to the Target pharmacy as a precaution.
Moving right along to today. Yep, I'm blogging from chemo again. Hey, I view chemo as quiet, catch-up time. At least until the massive amounts of benedryl kick in and make me loopy.
As you might have guessed from the title of today's blog, I am back in a private room, due to the bronchitis. Placed in the luxurious (for chemo, at least) confinement.
The other patients look like they are torn between shunning my not-bald-and-still-looks healthy self who occasionally coughs and wondering if I gave the chemo nurse a $20 to score one of the few private rooms, complete bed and flat screen TV.
Trust me, other chemo patients. You are not missing much. Except the TV and the porn DVDs I brought with me. (Oh, just kidding.)
Here are the pics of my swank room.
Which it did. I spent two days with a hacking, dry cough, in bed with my industrial strength humidifier going full blast. (I was so tired, I don't remember most of Sunday.) CJ and my MIL, Betsy, took care of everything. Thank you SOOOOOO MUCH!!!
I knew it was bronchitis right away. Years teaching, you pick up everything. (Except the chicken pox. But that's because I had it back in 1982. You know, before the chicken pox vaccination days, when you just caught the darn thing and got to spend two weeks at home?) Anyhoo, dry, unproductive cough = bronchitis.
Unfortunately, bronchitis + chemo patient = calling the oncologist. In case your white blood cells aren't up to the task and you die. This upsets the doctor. So, you call (because you are a good little patient, not because you are really worried) and the oncologist's nurse wants you to come in right away. In my case, I called from the road, when I was dropping off Betsy down outside of Fredericksburg, Virginia. (About an hour and half from the DC metro area.)
After I told the nuse that:
1. I was in Fredericksburg at that time (2pm, Tuesday)
2. And I had my 3 year-old with me and there was no one I could drop her off with if I raced back to DC to see Dr. Dendalouri
the nuse said, "Oh, crap."
Yeah, sorry. An appointment that day wasn't happening. An anti-biotic prescription was called in to the Target pharmacy as a precaution.
Moving right along to today. Yep, I'm blogging from chemo again. Hey, I view chemo as quiet, catch-up time. At least until the massive amounts of benedryl kick in and make me loopy.
As you might have guessed from the title of today's blog, I am back in a private room, due to the bronchitis. Placed in the luxurious (for chemo, at least) confinement.
The other patients look like they are torn between shunning my not-bald-and-still-looks healthy self who occasionally coughs and wondering if I gave the chemo nurse a $20 to score one of the few private rooms, complete bed and flat screen TV.
Trust me, other chemo patients. You are not missing much. Except the TV and the porn DVDs I brought with me. (Oh, just kidding.)
Here are the pics of my swank room.
Friday, January 15, 2010
Soooo Sleepy.....Thank You Benedryl and Ativan
Today was my second chemo treatment. Therefore, the "push" aka the rapidity in which the IV machine pushes in the medicine was much faster today. And then I got sick to my stomach. (Yes, I'd already had an IV of an anti-emetic.) So, my nurse hit me up with Ativan in addition to copious amounts of Benadryl earlier. Woooo-Hoooooo!!!!
I texted CJ at his meeting laughing my butt off. "You can't come and get me now. I'm like...soooooo high." "OK. Umm.. what did they give you?"
He drove me home and I slept like a rock. I was so disoriented that I woke up and thought I was at my parent's old house.
I texted CJ at his meeting laughing my butt off. "You can't come and get me now. I'm like...soooooo high." "OK. Umm.. what did they give you?"
He drove me home and I slept like a rock. I was so disoriented that I woke up and thought I was at my parent's old house.
What My Hook-Up Looks Like...
I haven't been able to adequetly describe my catheter port and how it works with the IV.
So, I took a picture. Note the needle. It's attached to a butterfly clip that looks like a telephone jack. I take a deep breath and the nurse locates the silicon entry part of the port with her finger. Then she inserts the needle. The only thing I feel is when the needle pierces the skin.
So, I took a picture. Note the needle. It's attached to a butterfly clip that looks like a telephone jack. I take a deep breath and the nurse locates the silicon entry part of the port with her finger. Then she inserts the needle. The only thing I feel is when the needle pierces the skin.
Tuesday, January 12, 2010
Not Sick Yet
Really, there's no easier way to put it. I'm feeling exactly the way I did last week before I started chemo.
Sorry to disappoint everyone but I don't think the "fussing over me" phase should commence until I feel like poop. Not that I don't appreciate it but I'm sure there will come a time that I will really will need the help.
I'm assuming as chemo continues and the Taxol prevents more of my cells from replicating, I will not feel so hot. As I'm only in my first week, I've only been exposed to 1/12th of the prescribed poison.
However, I am getting paranoid. Every time my scalp itches, I wonder if my hair is about to go the way of Mr. Clean.
So, I'm handling this the only way I know how-cleaning the house in case I do get sick.
Sorry to disappoint everyone but I don't think the "fussing over me" phase should commence until I feel like poop. Not that I don't appreciate it but I'm sure there will come a time that I will really will need the help.
I'm assuming as chemo continues and the Taxol prevents more of my cells from replicating, I will not feel so hot. As I'm only in my first week, I've only been exposed to 1/12th of the prescribed poison.
However, I am getting paranoid. Every time my scalp itches, I wonder if my hair is about to go the way of Mr. Clean.
So, I'm handling this the only way I know how-cleaning the house in case I do get sick.
Saturday, January 9, 2010
Fun with Wigs
My posse and I finally ventured out to get a wig for my soon-to-bald head. We went to Bravadas in Fairfax City. Very nice people. Especially when faced with a three year old kid shrieking, "I wanna try THAT ONE!"
I found a human hair wig that looks like my current hair. Not bad, just a little lighter than my hair is during the winter. The shop will darken it up for me and trim it when I start losing my hair. (It will fit differently after I lose my hair so it's not recommended to do it beforehand.)
My women in my support group have told me that I should consider a synthetic wig because you never need to style it. That's just it-unless I'm doing something fancy (right...I'm a SAHM and co-op pre-school parent-helper. The need for hair perfection just isn't there.) I don't style my hair. I stick in a clip or a pony-tail. Wearing a styled wig would certainly tip off people who know me that I'm wearing a wig. Which is not what I'm going for.
I found a human hair wig that looks like my current hair. Not bad, just a little lighter than my hair is during the winter. The shop will darken it up for me and trim it when I start losing my hair. (It will fit differently after I lose my hair so it's not recommended to do it beforehand.)
My women in my support group have told me that I should consider a synthetic wig because you never need to style it. That's just it-unless I'm doing something fancy (right...I'm a SAHM and co-op pre-school parent-helper. The need for hair perfection just isn't there.) I don't style my hair. I stick in a clip or a pony-tail. Wearing a styled wig would certainly tip off people who know me that I'm wearing a wig. Which is not what I'm going for.
CJ as Wayne Campbell, from Wayne's World
Friday, January 8, 2010
This is How "Lefty" Rolls....
This is my answer to the "gone viral" Facebook survey, "Bra Color as My Status" . For Breast Cancer patients, it's what goes in the bra that counts.
This is "Lefty," dressed up and ready to party.
Welcome to Chemo-Land!! Mom and I Blaze a Trail of Destruction in Our Wake...
I started chemo today. It was much easier than I thought it would be. However, I'm chalking that up to fabulous anti-nausea and steroidal drugs. Oh, and I'm relatively healthy. Unlike almost every other person in the infusion room. Is this how I'm going to look in a few weeks? Moony-faced? (Crap. I'd better start eating watermelon now-which is a testament to how vain I am-I loathe and despise all melons but they do have great diuretic properties.)
In other news, my mom (who took me to chemo because Elizabeth's school went to a Tiny Tots concert today and the parents had to drive.) and I lived up to my expectations at the Infusion suite.
When we were shown to the "comfy" chair....with pillow(!) and the hard-as-a-rock support person chair, my mom was putting her piles of stuff down and tripped, almost knocking the IV out of the patient behind us. (In my mom's defense, the treatment areas are really close together. Note the picture below. The guy right in back of her was unfortunate almost-popped-IV victim's support person. Said victim gave us a scared look and went back to reading a Korean magazine.)
Next, we both had to use the bathroom. Support people are segregated/punished for being healthy yet again, so she had to hunt for the Ladies Room in the hall. Which she flooded. Right away.
Meanwhile, I went inside the nearest infusion suite bathroom and flushed the tissue paper someone else had thrown in that toilet. It flooded.
So, we are 0-3 now. I think it might be an infusion suite record for how many problems we managed to cause in under 5 minutes. Nurses with plungers can really look angry.....and dangerous.
At this point, I called Jo. Who laughed her butt off. Clearly, she and Dave possessed more hospital dignity and coordination than I will ever have during their sojourns to the PICU. And I bet the other patients didn't jerk their IV's closer when they walked past the infusion areas. (Hey-I now realize you don't push your IV back from the bathroom like you push a stroller when you are jogging. My bad. I didn't know the IV wheels would snag the pharmacist's med cart. )
After being given the fabulous "don't have an allergic reaction to chemo and die drugs" that made me sleepy, loopy, and then wired, Megan, my nurse, finally started the chemo.
The only reactions I had were hot flashes when I was given the Herceptin. Oh, and I also had a reaction to the stupid adhesive on the non-latex tape used to keep my IV in place. (It's getting to the point where nurses look at my chart and ask me, "Is there anything you're not allergic to?" I'm allergic to latex, codeine, all codeine derivatives, percosette, darvasette, sulfa based drugs, and ethyromayacin. My pharmacist hates me, too.) So, feeling good for right now. I'll update later when the fatigue and physical ugliness start to kick in. Here is my basket o' poison, aka the bags of chemo medicine.
I did learn that my medi-port/ Power Port rocks. The regular IVs in the arm vein not only looked painful, but I saw those patients had ice packs on the insertion site. Ouch. I'm glad that (so far) the port is comfortable and I don't look like a heroin junkie.
IT TOOK FOREVER. I arrived at 10am and didn't get our of there until 4pm. Next time, I want to score one of the cozy private rooms that seem to be reserved for the octogenarians. I think that might be safer for us....
In other news, my mom (who took me to chemo because Elizabeth's school went to a Tiny Tots concert today and the parents had to drive.) and I lived up to my expectations at the Infusion suite.
When we were shown to the "comfy" chair....with pillow(!) and the hard-as-a-rock support person chair, my mom was putting her piles of stuff down and tripped, almost knocking the IV out of the patient behind us. (In my mom's defense, the treatment areas are really close together. Note the picture below. The guy right in back of her was unfortunate almost-popped-IV victim's support person. Said victim gave us a scared look and went back to reading a Korean magazine.)
Next, we both had to use the bathroom. Support people are segregated/punished for being healthy yet again, so she had to hunt for the Ladies Room in the hall. Which she flooded. Right away.
Meanwhile, I went inside the nearest infusion suite bathroom and flushed the tissue paper someone else had thrown in that toilet. It flooded.
So, we are 0-3 now. I think it might be an infusion suite record for how many problems we managed to cause in under 5 minutes. Nurses with plungers can really look angry.....and dangerous.
At this point, I called Jo. Who laughed her butt off. Clearly, she and Dave possessed more hospital dignity and coordination than I will ever have during their sojourns to the PICU. And I bet the other patients didn't jerk their IV's closer when they walked past the infusion areas. (Hey-I now realize you don't push your IV back from the bathroom like you push a stroller when you are jogging. My bad. I didn't know the IV wheels would snag the pharmacist's med cart. )
After being given the fabulous "don't have an allergic reaction to chemo and die drugs" that made me sleepy, loopy, and then wired, Megan, my nurse, finally started the chemo.
The only reactions I had were hot flashes when I was given the Herceptin. Oh, and I also had a reaction to the stupid adhesive on the non-latex tape used to keep my IV in place. (It's getting to the point where nurses look at my chart and ask me, "Is there anything you're not allergic to?" I'm allergic to latex, codeine, all codeine derivatives, percosette, darvasette, sulfa based drugs, and ethyromayacin. My pharmacist hates me, too.) So, feeling good for right now. I'll update later when the fatigue and physical ugliness start to kick in. Here is my basket o' poison, aka the bags of chemo medicine.
I did learn that my medi-port/ Power Port rocks. The regular IVs in the arm vein not only looked painful, but I saw those patients had ice packs on the insertion site. Ouch. I'm glad that (so far) the port is comfortable and I don't look like a heroin junkie.
IT TOOK FOREVER. I arrived at 10am and didn't get our of there until 4pm. Next time, I want to score one of the cozy private rooms that seem to be reserved for the octogenarians. I think that might be safer for us....
Thursday, January 7, 2010
You Really Can Buy Anything on eBay....
Everything for the web-surfing chemo patient.
1. Wigs
2. Scarves and Do-rags
Although, I'm thinking I want one saying, "Why, yes, I'm a chemo patient. However did you guess?"
3. Breast Forms
4. Chemo Hats
On day, we will just order chemo drugs on ebay, too....
1. Wigs
2. Scarves and Do-rags
Although, I'm thinking I want one saying, "Why, yes, I'm a chemo patient. However did you guess?"
3. Breast Forms
4. Chemo Hats
On day, we will just order chemo drugs on ebay, too....
Wednesday, January 6, 2010
My Last Haircut and Color
Tomorrow I will have my hair cut, colored (come on-I don't even know what the natural color is and I'm too old and vain to find out now), highlighted. (By Monsieur Christophe. Highlights are a necessary evil when you color over the age of 30 and want to make it look semi-natural. My days of flat-colored "red" ended in my mid-20s.) And yes, CJ does all the highlighting. (I try to tell him that it's a practical application of art. Like the Bauhaus. I don't think he's buying it.)
Am I sad? Well, duh. Yes. I love my hair. I've never been bald. I was born a monkey. No, not kidding. According to my mother and her meticulous Baby book, I had to have my first haircut at 3 months. Apparently, my bangs had grown down to my mouth.
So, I'm kind of viewing these last few days before chemo starts on Friday morning as my last few days of normalcy.
I'm getting a wig. But I've decided to not do the scarf thing. It's one thing if it's because you are cold; but if you think you are fooling anyone, think again. A scarf + no eyebrows = chemo. If you are going to try and fool people, don't do it half-assed. I've decided to get a really nice wig or bald it.
Why am I doing chemo, even though the one bit (.4 cm of invasive cancer) is gone and anything under 1 cm is not usually recommended for chemo? To lower my chances of recurrence. And adding the hormonal therapy, herceptin, to help with the HER2 Neu helps, too.
I was given 5 choices of treatment by the great oncologist I (finally!) settled on. I picked the one that told me what I wanted to hear. I'm simple that way. Kidding. Dr. Neelima Dendalouri was highly recommended and my age (Wow. When did I get to be that old?) She takes into consideration the fact that I have PCOS and can't wait 5 years to have another child.
I chose the one-chemo drug treatment, Taxol. I'll be part of the final phase of a clinical study. (Which apparently is mandatory when you are diagnosed with Breast Cancer. You must volunteer for a medical study and participate in buying Breast Cancer Awareness items and fundraising for the Susan G. Komen Fund. Otherwise, women in pink shun you.) I still haven't given a dime to the Komen Fund and have zero interest in any Race for the Cure. Consider me shunned. (I'm not cruel; I just prefer Habitat for Humanity.)
My chemo treatment is weekly, from this Friday to the last Friday in March. A low dose with higher frequency.
I'm not looking forward to the next few weeks; but, if I'm going to be ugly (and please, hairless makes everyone look like an egg, no way around that) it might as well be during the ugliest time of the year. Same thing with being sick. If I'm going to be sick, I rather be sick now so I can play with Elizabeth outside in the summer.
Am I sad? Well, duh. Yes. I love my hair. I've never been bald. I was born a monkey. No, not kidding. According to my mother and her meticulous Baby book, I had to have my first haircut at 3 months. Apparently, my bangs had grown down to my mouth.
So, I'm kind of viewing these last few days before chemo starts on Friday morning as my last few days of normalcy.
I'm getting a wig. But I've decided to not do the scarf thing. It's one thing if it's because you are cold; but if you think you are fooling anyone, think again. A scarf + no eyebrows = chemo. If you are going to try and fool people, don't do it half-assed. I've decided to get a really nice wig or bald it.
Why am I doing chemo, even though the one bit (.4 cm of invasive cancer) is gone and anything under 1 cm is not usually recommended for chemo? To lower my chances of recurrence. And adding the hormonal therapy, herceptin, to help with the HER2 Neu helps, too.
I was given 5 choices of treatment by the great oncologist I (finally!) settled on. I picked the one that told me what I wanted to hear. I'm simple that way. Kidding. Dr. Neelima Dendalouri was highly recommended and my age (Wow. When did I get to be that old?) She takes into consideration the fact that I have PCOS and can't wait 5 years to have another child.
I chose the one-chemo drug treatment, Taxol. I'll be part of the final phase of a clinical study. (Which apparently is mandatory when you are diagnosed with Breast Cancer. You must volunteer for a medical study and participate in buying Breast Cancer Awareness items and fundraising for the Susan G. Komen Fund. Otherwise, women in pink shun you.) I still haven't given a dime to the Komen Fund and have zero interest in any Race for the Cure. Consider me shunned. (I'm not cruel; I just prefer Habitat for Humanity.)
My chemo treatment is weekly, from this Friday to the last Friday in March. A low dose with higher frequency.
I'm not looking forward to the next few weeks; but, if I'm going to be ugly (and please, hairless makes everyone look like an egg, no way around that) it might as well be during the ugliest time of the year. Same thing with being sick. If I'm going to be sick, I rather be sick now so I can play with Elizabeth outside in the summer.
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