Time is flying by, perhaps because radiation is a piece of
cake compared to chemo. At this point I only have eight more treatments
left! Many people have asked me what it's like, so I found a YouTube
video that gives an idea of what the
room and the machine look like, as well as a basic explanation of how
the machine works. I'm having trouble embedding it, so I'm just sharing the link here: https://www.youtube.com/watch?v=Nuqmt7aF2FA. The room, machine, and the table the patient lies on in the video are
just like in the facility where I go (Mills Breast Cancer Institute in
Urbana, IL).
As I said, radiation is very easy. The most difficult part is lying still and not scratching the inevitable itch on my chin or eye for the 30 minutes or so that it takes to get the treatment. I've also had minimal side effects so far; just some mild redness, like a sunburn, on the radiated area (which includes the upper chest where my right breast was, the armpit, behind the arm on my shoulder blade, and the lymph node area just above the right collar bone). But at my weekly visit with the radiologic onocologist yesterday, he said that my skin looks great--perhaps the best he's seen at this stage in treatment. Naturally, I gave a vigorous fistpump and exlaimed, "Yessss!!!" I asked, "Does that mean I get an A?" An he said, "No, an A+!"
Meanwhile, back at the ranch, my hair is VERY slowly beginning to rejuvenate. It's still hyper short, but it's downy soft, and so far it appears to be growing in dark rather than gray. To most people I probably still look bald, but as I went for a bike ride yesterday evening I could feel the wind blowing through it. Simple pleasures. :-)
The first slap
This photo was taken the day after I was diagnosed, and it is my first bitch slap at cancer. I'm the one with the icepack symbolically placed on my boob. My teammates changed our team's uniform to pink at the last minute, and I came off the soccer field that night with one goal and a whole lot of love. Several of these women are my close friends, but they are all warriors, and they all helped me set the tone for this fight.
Tuesday, July 8, 2014
Wednesday, June 25, 2014
A prayer to the hair goddess
Dear Hair Goddess,
First of all, let me just say 'thank you' for nose hair. Yes, nose hair. Who could have imagined its virtues prior to chemotherapy?! For seven months I dealt with a nose that ran constantly, which I attribute at least in part to the loss of precious hair helping to hold back the flood. That constant drip has now subsided due to your generosity, and my nasal passage and I are thrilled.
And let me also say 'thank you' for the simple pleasure of not having lost 100% of my head hair during chemo. I'm not sure why that made me happy; after all, except for a few short whisps, my head was pretty much an oversized cue ball. But I suppose I feel an odd sense of pride that some of my hair was resistant to the toxic cocktail my body was subjected to. So for that, I am grateful.
I am also pleased to see that some of my hair is beginning to grow back. But if I may ask, why the rush to replenish my leg hair? I haven't exactly missed shaving my legs. And I am curious as to the significance of my once-again-plentiful chin stubble. Is my face really considered a priority zone for new hair growth? Again, I appreciate what you've done for me. But if you hadn't noticed, I'm pretty much bald on top, and getting a bit of my head rug back would be nice. It need not be a lot, and I'm not too concerned about the color or texture. Gray and curly would suit me just fine at this point. Hell, make it purple for all I care. But this cue ball thing is getting a bit old.
In case it helps my cause, Craig has made a special sacrifice to appease your bouffant highness by shaving his formerly thick mane to resemble my stubbly chemo head (see photo below). I hope you will accept his locks as a token of our devotion and appreciation.
Your faithful but still largely hairless follower,
Lara
First of all, let me just say 'thank you' for nose hair. Yes, nose hair. Who could have imagined its virtues prior to chemotherapy?! For seven months I dealt with a nose that ran constantly, which I attribute at least in part to the loss of precious hair helping to hold back the flood. That constant drip has now subsided due to your generosity, and my nasal passage and I are thrilled.
And let me also say 'thank you' for the simple pleasure of not having lost 100% of my head hair during chemo. I'm not sure why that made me happy; after all, except for a few short whisps, my head was pretty much an oversized cue ball. But I suppose I feel an odd sense of pride that some of my hair was resistant to the toxic cocktail my body was subjected to. So for that, I am grateful.
I am also pleased to see that some of my hair is beginning to grow back. But if I may ask, why the rush to replenish my leg hair? I haven't exactly missed shaving my legs. And I am curious as to the significance of my once-again-plentiful chin stubble. Is my face really considered a priority zone for new hair growth? Again, I appreciate what you've done for me. But if you hadn't noticed, I'm pretty much bald on top, and getting a bit of my head rug back would be nice. It need not be a lot, and I'm not too concerned about the color or texture. Gray and curly would suit me just fine at this point. Hell, make it purple for all I care. But this cue ball thing is getting a bit old.
In case it helps my cause, Craig has made a special sacrifice to appease your bouffant highness by shaving his formerly thick mane to resemble my stubbly chemo head (see photo below). I hope you will accept his locks as a token of our devotion and appreciation.
Your faithful but still largely hairless follower,
Lara
Sunday, June 15, 2014
Relay for Life with a One-Eyed Dammit Doll
As many of you know, I participated in the American Cancer Society's Relay for Life yesterday evening in Champaign. Actually, I didn't walk all night with a team, but I did walk the survivors' lap. Craig and Nate both joined in, walking the caregivers' lap with me after the survivors' lap (Evan was away at a soccer tournament). What an awesome event! It is definitely inspiring to see so many people working so hard to raise money for cancer research and support. I didn't even sign up for the event until last Wednesday. But within
only two hours of signing up, friends and family had already donated
over $300, and in end, I raised $1,200 (well over my initial goal of
$200)! Thank you to all of you who donated or helped spread the word.
And for those of you who would like to donate, but either didn't know
about this or haven't yet had the chance, you can do so here: http://www.cancer.org/.
To be honest, Nate was not very excited about being there. He was happy to do it, and understood the significance for me, but there wasn't a whole lot for an 11 year old kid to do there prior to the kick-off of the event at 6:00. Besides, he was missing the England-Italy world cup game! There were a few food vendors, and we could stroll around the tent sites of the different teams. Each team was selling something (typically food) to raise money for the ACS, and we found some cookies and brats to call dinner.
At one point, Nate said, "I wish they sold something other than food.
They should be selling little dolls that represent cancer that you can
stick needles into or something." I thought it wasn't a bad idea, and sure enough, after walking around a bit more, we came upon a team that was selling "Dammit Dolls." A Dammit Doll is designed to be whacked around while shouting "dammit!" when feeling frustrated or angry. Each one comes with a poem explaining its purpose (see photo lower right). Of course we had to buy one. I picked one with a pink ribbon, and then promptly stuffed in my purse as the survivors' lap was about to begin. And when we pulled it out a bit later, we noted that it was missing an eye. This gave it a sort of rough and tumble look, arguably more appropriate for its intended use (see photo at left)
A particular highlight of the event for me was meeting a woman with a diagnosis virtually identical to mine, but who is a few weeks ahead of me in treatment. I actually recognized her from the chemo suite, and it turns out that our treatments have been identical. I swear, I just gravitated toward her, as I realized that it was the first time I've actually talked with someone going through exactly what I've gone through at the same time. It was incredibly therapeutic to talk with her and to share stories. And what's more, her head hair is beginning to grow back! The only hair I've had growing back so far is my leg hair and my nose hair. I'll take it I guess, but it's not exactly the regrowth I was hoping for at this point.
Anyway, I've posted a couple more photos from Relay for Life below. And here is a link to the Champaign-Urbana's newspaper's online photo gallery from the event, which includes one of me and Nate ringing the Survivor Bell together:
http://www.news-gazette.com/multimedia/photogallery/2014-06-14/relay-life-2014.
To be honest, Nate was not very excited about being there. He was happy to do it, and understood the significance for me, but there wasn't a whole lot for an 11 year old kid to do there prior to the kick-off of the event at 6:00. Besides, he was missing the England-Italy world cup game! There were a few food vendors, and we could stroll around the tent sites of the different teams. Each team was selling something (typically food) to raise money for the ACS, and we found some cookies and brats to call dinner.
At one point, Nate said, "I wish they sold something other than food.
They should be selling little dolls that represent cancer that you can
stick needles into or something." I thought it wasn't a bad idea, and sure enough, after walking around a bit more, we came upon a team that was selling "Dammit Dolls." A Dammit Doll is designed to be whacked around while shouting "dammit!" when feeling frustrated or angry. Each one comes with a poem explaining its purpose (see photo lower right). Of course we had to buy one. I picked one with a pink ribbon, and then promptly stuffed in my purse as the survivors' lap was about to begin. And when we pulled it out a bit later, we noted that it was missing an eye. This gave it a sort of rough and tumble look, arguably more appropriate for its intended use (see photo at left)A particular highlight of the event for me was meeting a woman with a diagnosis virtually identical to mine, but who is a few weeks ahead of me in treatment. I actually recognized her from the chemo suite, and it turns out that our treatments have been identical. I swear, I just gravitated toward her, as I realized that it was the first time I've actually talked with someone going through exactly what I've gone through at the same time. It was incredibly therapeutic to talk with her and to share stories. And what's more, her head hair is beginning to grow back! The only hair I've had growing back so far is my leg hair and my nose hair. I'll take it I guess, but it's not exactly the regrowth I was hoping for at this point.
Anyway, I've posted a couple more photos from Relay for Life below. And here is a link to the Champaign-Urbana's newspaper's online photo gallery from the event, which includes one of me and Nate ringing the Survivor Bell together:
http://www.news-gazette.com/multimedia/photogallery/2014-06-14/relay-life-2014.
Wednesday, June 4, 2014
Radiation as stealth bitch slaps
So, with the onset of summer I'm moving forward with treatment. I had my first (of 30) radiation treatments today. I have sort of been looking forward to radiation, knowing that it will be so much easier on my system than chemotherapy. What I wasn't expecting is how uneventful radiation is.
I'm not exactly sure what I was I thought it would be like, but at a minimum I guess I was thinking a little light might come out of the radiation gizmo hovering over me, or perhaps there'd be some buzzing sound coming from it, like when you get an X-ray. And at most, I was imagining it might be a bit like lying in a tanning booth (although I've never done that), or in some Star-Trekky table thing with blue neon lights surrounding me. But no, it's pretty much just lying really still in a plain old medical room with a machine over me that apparently sends radiation into my body in a way that evades my sensory perception. The only sounds I heard other than the conversation of the technicians was the Norah Jones music playing on the sound system. While I love Norah Jones, I'm almost disappointed! I mean, this is the beginning of the last major portion of my treatment, so something more explicitly bitch-slappy would seem to be in order, like the Violent Femmes.
But really, I can't complain. Radiation is easy-peasy. The most "severe" side effects would be a bit of fatigue and some sunburn-like skin changes on the radiated area, but if those happen at all it wouldn't be until I'm a few weeks into the process. So I'm running with it, and reconceptualizing this process as stealth bitch slaps. Any remaining cancer cells won't know what hit them. In fact, they all just kiss off into the air!
I'm not exactly sure what I was I thought it would be like, but at a minimum I guess I was thinking a little light might come out of the radiation gizmo hovering over me, or perhaps there'd be some buzzing sound coming from it, like when you get an X-ray. And at most, I was imagining it might be a bit like lying in a tanning booth (although I've never done that), or in some Star-Trekky table thing with blue neon lights surrounding me. But no, it's pretty much just lying really still in a plain old medical room with a machine over me that apparently sends radiation into my body in a way that evades my sensory perception. The only sounds I heard other than the conversation of the technicians was the Norah Jones music playing on the sound system. While I love Norah Jones, I'm almost disappointed! I mean, this is the beginning of the last major portion of my treatment, so something more explicitly bitch-slappy would seem to be in order, like the Violent Femmes.
But really, I can't complain. Radiation is easy-peasy. The most "severe" side effects would be a bit of fatigue and some sunburn-like skin changes on the radiated area, but if those happen at all it wouldn't be until I'm a few weeks into the process. So I'm running with it, and reconceptualizing this process as stealth bitch slaps. Any remaining cancer cells won't know what hit them. In fact, they all just kiss off into the air!
Monday, May 19, 2014
Major Medical
What would you do if you didn't (or don't!) have health insurance and all of a sudden you became "sick" or injured, your ailments falling into that category of "major medical?" And note that it does happen all of a sudden. In fact, all at once, you can become "sick" even when you feel "normal" and "healthy." That's how it happened for me last November when I was diagnosed. It's bat-shit scary, and that's before taking into account the potential financial hit.
I've taken a while to write about this only because I've had other things to say and simply haven't had the energy to get to it until now. But earlier this winter or spring, Craig was looking at statements and bills, and noted the cost of just one of my chemotherapy infusions from chemo course #1 (prior to surgery). This was when I received Taxol on a weekly basis and a cocktail of Taxol, Herceptin, and Perjeta every three weeks. The cost for one of these cocktails? About $50,000. We've all heard about the exorbitant costs of healthcare in the U.S., but seriously--$50,000 for one episode of chemo?
So what's going on here? That's actually a serious question, because I really don't know. I imagine it's partially the super-high price tag slapped onto new and innovative drugs like Perjeta (which, along with Herceptin, is made by Genentech), which has only been on the market for a year or two. But an article in Pharmacy Times lists the cost at just under $5,000 per dose (http://www.pharmacytimes.com/publications/health-system-edition/2012/August2012/Pertuzumab--Perjeta). And according to a Wikipedia article, Herceptin can cost about $70,000 for a full course of treatment (http://en.wikipedia.org/wiki/Trastuzumab). Even if we included Taxol, these numbers don't add up to $50,000 for one infusion of Taxol, Herceptin, and Perjeta. Sure, I would also get Benadryl, Zofran, and saline, but still...
According to an article in today's New York Times, the primary source of healthcare costs is not healthcare workers or physician's bills. Rather, it's executive salaries in the medical business world: http://www.nytimes.com/2014/05/18/sunday-review/doctors-salaries-are-not-the-big-cost.html?smid=fb-nytimes&WT.z_sma=OP_MTE_20140519&bicmp=AD&bicmlukp=WT.mc_id&bicmst=1388552400000&bicmet=1420088400000&_r=2. This includes CEOs of health insurance firms and hospital administrators, who make much more money than general physicians and nurses do. I'm thinking oncologists may make more than general physicians, but still--this article does an excellent job of pointing out where our "major medical" expenses are coming from, at least in part.
I would really love to know what those of you who work in the healthcare and biomedical industries know and think about all of this. Although I have no answers, I do know this: I am extremely fortunate not only to live in a place with quality healthcare, but also to be fully insured. I honestly cannot imagine what this whole experience would be like if I did not have that kind of security. And thus, I find it very very difficult to imagine why so many people would want to keep so many people from securing the same peace of mind. Obamacare ain't perfect, but neither are our bodies.
I've taken a while to write about this only because I've had other things to say and simply haven't had the energy to get to it until now. But earlier this winter or spring, Craig was looking at statements and bills, and noted the cost of just one of my chemotherapy infusions from chemo course #1 (prior to surgery). This was when I received Taxol on a weekly basis and a cocktail of Taxol, Herceptin, and Perjeta every three weeks. The cost for one of these cocktails? About $50,000. We've all heard about the exorbitant costs of healthcare in the U.S., but seriously--$50,000 for one episode of chemo?
So what's going on here? That's actually a serious question, because I really don't know. I imagine it's partially the super-high price tag slapped onto new and innovative drugs like Perjeta (which, along with Herceptin, is made by Genentech), which has only been on the market for a year or two. But an article in Pharmacy Times lists the cost at just under $5,000 per dose (http://www.pharmacytimes.com/publications/health-system-edition/2012/August2012/Pertuzumab--Perjeta). And according to a Wikipedia article, Herceptin can cost about $70,000 for a full course of treatment (http://en.wikipedia.org/wiki/Trastuzumab). Even if we included Taxol, these numbers don't add up to $50,000 for one infusion of Taxol, Herceptin, and Perjeta. Sure, I would also get Benadryl, Zofran, and saline, but still...
According to an article in today's New York Times, the primary source of healthcare costs is not healthcare workers or physician's bills. Rather, it's executive salaries in the medical business world: http://www.nytimes.com/2014/05/18/sunday-review/doctors-salaries-are-not-the-big-cost.html?smid=fb-nytimes&WT.z_sma=OP_MTE_20140519&bicmp=AD&bicmlukp=WT.mc_id&bicmst=1388552400000&bicmet=1420088400000&_r=2. This includes CEOs of health insurance firms and hospital administrators, who make much more money than general physicians and nurses do. I'm thinking oncologists may make more than general physicians, but still--this article does an excellent job of pointing out where our "major medical" expenses are coming from, at least in part.
I would really love to know what those of you who work in the healthcare and biomedical industries know and think about all of this. Although I have no answers, I do know this: I am extremely fortunate not only to live in a place with quality healthcare, but also to be fully insured. I honestly cannot imagine what this whole experience would be like if I did not have that kind of security. And thus, I find it very very difficult to imagine why so many people would want to keep so many people from securing the same peace of mind. Obamacare ain't perfect, but neither are our bodies.
The
Average Wholesale Price of pertuzumab (Perjeta) is $4890 per 420-mg
vial. - See more at:
http://www.pharmacytimes.com/publications/health-system-edition/2012/August2012/Pertuzumab--Perjeta#sthash.8451ACmy.dpuf
The
Average Wholesale Price of pertuzumab (Perjeta) is $4890 per 420-mg
vial. - See more at:
http://www.pharmacytimes.com/publications/health-system-edition/2012/August2012/Pertuzumab--Perjeta#sthash.8451ACmy.dpuf
Wednesday, May 14, 2014
It's alright
Last night I had a dream that my mom and I were shopping for hats and earrings, lost track of time, and missed today's doctor's appointment and my last chemo. The feeling is a bit like those dreams that I (and many people) have of missing the school bus or a final exam. Hmmm... What does it all mean? Well, I'm not 100% sure what it all means, but here are a few thoughts. First of all, I must make public that my dreams have shifted from really scary things to milder turmoils; from "oh shit, I have cancer" to more mundane little fears like missing appointments and school buses.
And significantly, today is my last scheduled chemotherapy infusion. As usual, I'm not looking forward to it (sort of like I wouldn't look forward to a final exam), but I am at the same time thrilled to be able to put this behind me. While my other infusions have been accompanied by the knowledge that I would feel like hell for a week, then good for a week, and then like hell for another week, this time I get to look forward to constant improvement in how I feel; a gradual but continued emergence from the nausea, fogginess, and sluggishness. This is in addition to other side effects that have been taking hold as the chemicals build up in my system: Fingernails breaking like nobody's business, a greenish tinge to my complexion, dark circles under my eyes, continued hair loss, mild neuropathy in my fingertips, and exhaustion even beyond my post infusion week. (As I've said before, I think the EPA would shut me down if they knew what was flowing through my veins.) But after today I will be over the biggest hump in my treatment, and it should be smooth sailing from here on out, with a steady process of detox, until...
RADIATION! That should start on June 4th, but it's very localized with minimal side effects. I should feel more like a person, my hair will start growing back, etc. But in celebration of finishing up chemotherapy and in anticipation of the last major stage of my treatment, here's a song for you all: The Beatle's Here Comes the Sun. The video is admittedly over-flowing with hyper cute little baby animals, but on the other hand, meaningful milestones and awesome songs will do that to people. And the sun theme seems fitting given my upcoming radiation. :-) One of the things I appreciate about this song is the gradual move from sweet and quiet anticipation of good things over the horizon to an emphatic exclamation point of those good things to come, and the knowledge that while things have been difficult, it's alright. Present tense. Indeed, it's alright.
And significantly, today is my last scheduled chemotherapy infusion. As usual, I'm not looking forward to it (sort of like I wouldn't look forward to a final exam), but I am at the same time thrilled to be able to put this behind me. While my other infusions have been accompanied by the knowledge that I would feel like hell for a week, then good for a week, and then like hell for another week, this time I get to look forward to constant improvement in how I feel; a gradual but continued emergence from the nausea, fogginess, and sluggishness. This is in addition to other side effects that have been taking hold as the chemicals build up in my system: Fingernails breaking like nobody's business, a greenish tinge to my complexion, dark circles under my eyes, continued hair loss, mild neuropathy in my fingertips, and exhaustion even beyond my post infusion week. (As I've said before, I think the EPA would shut me down if they knew what was flowing through my veins.) But after today I will be over the biggest hump in my treatment, and it should be smooth sailing from here on out, with a steady process of detox, until...
RADIATION! That should start on June 4th, but it's very localized with minimal side effects. I should feel more like a person, my hair will start growing back, etc. But in celebration of finishing up chemotherapy and in anticipation of the last major stage of my treatment, here's a song for you all: The Beatle's Here Comes the Sun. The video is admittedly over-flowing with hyper cute little baby animals, but on the other hand, meaningful milestones and awesome songs will do that to people. And the sun theme seems fitting given my upcoming radiation. :-) One of the things I appreciate about this song is the gradual move from sweet and quiet anticipation of good things over the horizon to an emphatic exclamation point of those good things to come, and the knowledge that while things have been difficult, it's alright. Present tense. Indeed, it's alright.
Monday, May 5, 2014
Grateful
Cleaning the garage
Taking care of the soccer carpooling
Feeding the pets
Emails and text messages from friends (even if I don’t
respond, I read them all)
Load after load of laundry
Fixing the towel rack
Cleaning up dog barf
Dinner
Pulling weeds
“You have a nicely shaped head”
Fixing the kitchen chair
Doing the grocery shopping
Hats
Getting the tire on my car fixed
Running a meeting for me
Mowing the lawn
Chocolate
Going out for coffee with me
Walking the dog
Driving the kids when they have to get to school early
Offers to shave and polish my head
Filling the bird feeders
A new pair of sweats for my horizontal days
Helping me plant the garden
Little notes in my box at work
Making sushi with the kids
Thoughtful cards in the mail
Cleaning out a birdhouse
Hand sanitizer everywhere
FMLA
Doing the dishes
Getting gas for the mower or my car
More dinner
An origami bird in my box at work
Presenting a paper for me
Squeezing me in last minute at the doctor’s office
Co-teaching with me
Fixing the doorknob
A vacation for the kids
Nurses who know my name without having to look it up
More laundry loads
Taking me out to watch a soccer game
More dinner
Listening to me talk about cancer and chemo
Remembering that sometimes I like to talk about things other
than cancer and chemo
A snuggly child
Cleaning the coffee maker
Helping a kid with their homework
A Facebook message
Letting the dog out first thing in the morning
Flowers
A new book
Scooping dog doo from the yard
Helping me understand my treatment
Driving me to physical therapy, doctors’ appointments, and
chemo
Ordering and picking up take-out
Jump starting the battery
Going to the kids' games and cheering them on
Fixing a loose part on a table
More dinner
Phone calls
Getting a kid a meal on the run
Picking up a prescription
Hugs
* * * * * * * * * * * * * * * * * * * * * *
I could go on and on, but you get the picture. So many people giving me (and us) so much. Thank you, all.
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