Here's the truth: Chemo sucks. More than you can guess. It hurts physically. Every time I eat anything it hurts my stomach, but then it hurts if I don't eat. I've lost probably 30% of my hair, if not more. Balls and clumps of hair fall out. It's gross. I can't really go outside because of the cold-enduced neuropathy, so we're stuck in our NYC apartment with the heat up.
The emotional pain is even worse. My mom and a friend visited and it was all I could do to lay out on the couch and have a conversation. I worry a lot that I'm letting everyone down by not being more active or more energetic. I worry that I'm going to suffer through all this and not be able to beat cancer. I worry that everyone's going to remember me as a lump on the couch. Well here's what I do on those days: take a lot of meds and naps, send self-indulgent pouty text messages to my sister and other unsuspecting folks and wait for the phone calls to come in of friends wanting to pick me up.
And I lean on Eric. I lean a lot. He did all the cooking this weekend. (Beef burgundy, risotto twice and meatballs tonight! All yummy. If "cheese please" wasn't an already taken , I'd recommend he start his own cooking blog) Because of the side effects, I can't really do the dishes either so Eric does those. Then I cry, and he comforts me. Gives me early fabulous Christmas presents and hugs. He tells me he's going to love me bald. Eric tells me I'm going to get through it. He makes me laugh and lifts me off the metaphorical ledge. (Eric did call me a jumper this weekend).
I had a realization today looking at my engagement ring. Warning: not a deep thought. This may be ramen noodle shallow (sorry inside joke). Coal has to go through a lot to become a diamond. There's a lot of pressure and time - There's a Shawshank Redemption quote in here somewhere....I think overall, someone's just making me into a big, better diamond. All the pain and suffering, all the chemo and fatigue, all the days spent in pain feeling even more pathetic than I look, missed opportunities to hang out with my friends. It's all to make me a better, stronger version of myself. I just wish I'd hurry up and get there already.
I will say though, a lot of people say that they couldn't do what I have to do. They don't think they're strong enough or brave enough. All I do is smile and say thank you. In reality, you never know how strong you are until you have to be. I don't think I'm tougher than anyone else. It's just my turn to prove to myself that I'm a diamond. I hope all my readers never have a day that they have to prove it to themselves. Life would be a lot easier. If you are ever a jumper though, give me a text. I'd like a chance to repay the favor.
Sunday, December 4, 2011
Saturday, November 19, 2011
PCBG Sucks!
Ok so just so people don't think my whole life is about cancer, here's my random thought from Wednesday. I've been helping my mom with her class on Thursday/Friday and in NYC since Friday. This blog will lack more depth than some of my other blogs, so we're now at negative depth. You've been warned.
I was moved by Old Navy's boot-licious ads (big guppie right here) and went to Old Navy to look at fleece and faux furs boots. I decided that boots would not take away my chronic pain or at least make it bearable. The boots weren't cute. I should have known that Old Navy always looks happier in commercials than in person. It just so happens that Old Navy is right next to a Party City and I figured that cheap wedding crud might make me happier than cheap fleece crud. I was right. It was so fun to figure out what I'm going to buy in the future. They've got a lot of the non-essential, essential wedding stuff - like bags for welcome bags, candy bags, favor bags, sand, vases, etc.
As I'm looking at unity candles, I heard another customer talking to the Party City balloon guy. What I heard annoyed me so much that I almost told these random strangers that they were the dumbest people I've heard all month. I didn't - you're welcome dumb Party City dude. So here's how the conversation went:
Customer: I need happy 3rd birthday balloons for my son
Party City Balloon Guy (PCBG): Ok
(boring conversation ensues about what balloons to pick out)
Customer: Yeah we had to waste our money on all this 1st and 2nd birthday stuff. Why can't we just get something that says "happy birthday" and then reuse it every year. Who needs balloons anyway? Not like the kid knows the difference.
PCBG: Yeah, I heard these parents in here earlier that had rented a moon bounce for their kid for his 3rd birthday. The kid won't ever remember it.
Stupid Customer: (nods in agreeance and makes some other dumb comment about wasting money)
I thought, "UM you do it because it's fun! That's why you get a moon bounce!" You're kid isn't going to remember anything until 3, but you still do fun activities with them - because you love your kid, you want them to laugh and have fun, and because it makes you happy to see them happy. That's why you get a 2 year old balloons. Why celebrate birthdays at all? if that's your beef. Their argument was more surrounding the wasting of money on someone that won't remember it than on expense of said balloon and/or moon bounce. I get the whole lack of disposable income to spend on fun, but non-essential stuff (like unity candles or candy bags). I was annoyed. So annoyed I had to call my sister, which in all honesty I call her when I'm annoyed, happy, sad indifferent, or gassy. One to tell her that I'm proud that she likes to take her kids to do things and is such a good mom, and two to tell her how proud she should be of me that I didn't yell at PCBG. After calling Lisa, I did what I usually do: Call my mom and have the exact same conversation again. She agreed that PCBG sucks and that Party City in general will be good for wedding stuff.
So that's your blog post for today. Sorry if you were hoping to learn something about cancer. For those of you who read my blog for that reason: Chemo sucks and, in my case, causes ingrown toe nails. There. Feel better? I didn't think so.
I was moved by Old Navy's boot-licious ads (big guppie right here) and went to Old Navy to look at fleece and faux furs boots. I decided that boots would not take away my chronic pain or at least make it bearable. The boots weren't cute. I should have known that Old Navy always looks happier in commercials than in person. It just so happens that Old Navy is right next to a Party City and I figured that cheap wedding crud might make me happier than cheap fleece crud. I was right. It was so fun to figure out what I'm going to buy in the future. They've got a lot of the non-essential, essential wedding stuff - like bags for welcome bags, candy bags, favor bags, sand, vases, etc.
As I'm looking at unity candles, I heard another customer talking to the Party City balloon guy. What I heard annoyed me so much that I almost told these random strangers that they were the dumbest people I've heard all month. I didn't - you're welcome dumb Party City dude. So here's how the conversation went:
Customer: I need happy 3rd birthday balloons for my son
Party City Balloon Guy (PCBG): Ok
(boring conversation ensues about what balloons to pick out)
Customer: Yeah we had to waste our money on all this 1st and 2nd birthday stuff. Why can't we just get something that says "happy birthday" and then reuse it every year. Who needs balloons anyway? Not like the kid knows the difference.
PCBG: Yeah, I heard these parents in here earlier that had rented a moon bounce for their kid for his 3rd birthday. The kid won't ever remember it.
Stupid Customer: (nods in agreeance and makes some other dumb comment about wasting money)
I thought, "UM you do it because it's fun! That's why you get a moon bounce!" You're kid isn't going to remember anything until 3, but you still do fun activities with them - because you love your kid, you want them to laugh and have fun, and because it makes you happy to see them happy. That's why you get a 2 year old balloons. Why celebrate birthdays at all? if that's your beef. Their argument was more surrounding the wasting of money on someone that won't remember it than on expense of said balloon and/or moon bounce. I get the whole lack of disposable income to spend on fun, but non-essential stuff (like unity candles or candy bags). I was annoyed. So annoyed I had to call my sister, which in all honesty I call her when I'm annoyed, happy, sad indifferent, or gassy. One to tell her that I'm proud that she likes to take her kids to do things and is such a good mom, and two to tell her how proud she should be of me that I didn't yell at PCBG. After calling Lisa, I did what I usually do: Call my mom and have the exact same conversation again. She agreed that PCBG sucks and that Party City in general will be good for wedding stuff.
So that's your blog post for today. Sorry if you were hoping to learn something about cancer. For those of you who read my blog for that reason: Chemo sucks and, in my case, causes ingrown toe nails. There. Feel better? I didn't think so.
Tuesday, November 15, 2011
Lucky Girl
Sometimes I think I'm the luckiest girl in the world.
I know that sounds strange on a cancer blog and especially in contrast to my last couple of posts. However, I have so many wonderful people in my life. I feel so loved every single day. There's no possible way I could even list every person whose helped me through.
For starters, Eric takes such good care of me when we're together and when we're not. He's so understanding and wonderfully generous. I couldn't ask for a better partner in crime. Eric always can make me laugh - or at least stop crying. His family (both immediate and extended) is so kind and caring. I'm so lucky to spend the rest of my life getting to know them. His mother is the sweetest and most thoughtful.
My family makes me feel so lucky. Of course my mother and father are supportive as I've mentioned before. What I don't think I've mentioned enough is how much my sister, Lisa, and brother, Jacob, carry me through on the bad days. They're always around to listen to my complaints, make me laugh, and provide me with the one thing I'm clearly lacking: perspective. My sister despite being 3000 miles and a couple of time zones away always, and I mean pretty much always answers my calls - regardless of how loud her kids are screaming, what she's doing, or if she's at work seeing patients. She always, always makes me smile. Jacob is unequivocally the most thoughtful person I know - he literally said to me the other day that he's upset because he couldn't think of enough ways to help me through chemo. Jacob, News Flash: you are awesome and do a ton for me. There's not one request that I've asked him to do that he has said no to - and I ask for a lot of help. Every girl should be so lucky to have siblings as awesome as mine.
My cousins are awesome. Dale and Diana dropped everything on like 15 minutes notice when we surprised them with a visit. I'm so excited for Diana to make my wedding cake! and Dale never ceases to amaze me with her speed of response to my every illogically posting. My cousin Enna comes to visit me in the hospital often and even though I don't need them, brings me fabulous treats that I love.
My second mother, Diane, is one of the most selfless people I've ever met. I hope she knows how much she means to my mom and I. I'm pretty sure when she moves to Denver (aka one of the saddest days ever) that it will take multiple people working overtime to fill the hole.
I cannot even begin to describe the outpouring of love I feel from my friends. And no one would believe me if I tried. I get amazingly thoughtful care packages from my sorority sisters, Darden, college and high school friends, family friends and coworkers. I love and read every card, email, and Facebook message. Please don't think the lack of speedy ( if at all :-|) response doesn't mean that I'm not truly touched. It would seriously be near impossible to respond to everyone. Just to name a few, thank you Becca, Culp, Sylvia, Laura, Antonio, Hawkins, Hartman, Sue, Jackie, Oren (for the awesome Facebook message), and Mrs. Schilling.The list goes on and on. No way I could even list everyone. Not a day goes by that I don't get a phone call or card from someone unexpected. I love you guys.
My bridesmaids put up with me sending the most random and sporadic emails. Anyone who has gotten married knows that picking bridesmaids can be very stressful. However, I'm so happy with my choices. I'm so lucky to have Kelly and Stephanie in my life.
The most unexpected part of being sick is how kind strangers are. I've been annoyed that thus far I've done all my treatments in-patient in the hospital. Having roommates would normally annoy me and any other normal person, but I've been so lucky to meet the nicest people in the hospital. Complaining about cancer and sharing treatment horror stories I think forms a bond. The hospital staff is so friendly, including the meal chick, the techs, the nurses, the admin staff.
If it wasn't for cancer I wouldn't know how strong my support network is. I wouldn't know how loved I am. It's really a gift on most days and I know I'm a very very lucky girl. Even if there aren't pain meds strong enough to make me feel better, I'm still so full of love that today that the pain didn't matter.
P.S. I love you mom. You're my bestie.
I know that sounds strange on a cancer blog and especially in contrast to my last couple of posts. However, I have so many wonderful people in my life. I feel so loved every single day. There's no possible way I could even list every person whose helped me through.
For starters, Eric takes such good care of me when we're together and when we're not. He's so understanding and wonderfully generous. I couldn't ask for a better partner in crime. Eric always can make me laugh - or at least stop crying. His family (both immediate and extended) is so kind and caring. I'm so lucky to spend the rest of my life getting to know them. His mother is the sweetest and most thoughtful.
My family makes me feel so lucky. Of course my mother and father are supportive as I've mentioned before. What I don't think I've mentioned enough is how much my sister, Lisa, and brother, Jacob, carry me through on the bad days. They're always around to listen to my complaints, make me laugh, and provide me with the one thing I'm clearly lacking: perspective. My sister despite being 3000 miles and a couple of time zones away always, and I mean pretty much always answers my calls - regardless of how loud her kids are screaming, what she's doing, or if she's at work seeing patients. She always, always makes me smile. Jacob is unequivocally the most thoughtful person I know - he literally said to me the other day that he's upset because he couldn't think of enough ways to help me through chemo. Jacob, News Flash: you are awesome and do a ton for me. There's not one request that I've asked him to do that he has said no to - and I ask for a lot of help. Every girl should be so lucky to have siblings as awesome as mine.
My cousins are awesome. Dale and Diana dropped everything on like 15 minutes notice when we surprised them with a visit. I'm so excited for Diana to make my wedding cake! and Dale never ceases to amaze me with her speed of response to my every illogically posting. My cousin Enna comes to visit me in the hospital often and even though I don't need them, brings me fabulous treats that I love.
My second mother, Diane, is one of the most selfless people I've ever met. I hope she knows how much she means to my mom and I. I'm pretty sure when she moves to Denver (aka one of the saddest days ever) that it will take multiple people working overtime to fill the hole.
I cannot even begin to describe the outpouring of love I feel from my friends. And no one would believe me if I tried. I get amazingly thoughtful care packages from my sorority sisters, Darden, college and high school friends, family friends and coworkers. I love and read every card, email, and Facebook message. Please don't think the lack of speedy ( if at all :-|) response doesn't mean that I'm not truly touched. It would seriously be near impossible to respond to everyone. Just to name a few, thank you Becca, Culp, Sylvia, Laura, Antonio, Hawkins, Hartman, Sue, Jackie, Oren (for the awesome Facebook message), and Mrs. Schilling.The list goes on and on. No way I could even list everyone. Not a day goes by that I don't get a phone call or card from someone unexpected. I love you guys.
My bridesmaids put up with me sending the most random and sporadic emails. Anyone who has gotten married knows that picking bridesmaids can be very stressful. However, I'm so happy with my choices. I'm so lucky to have Kelly and Stephanie in my life.
The most unexpected part of being sick is how kind strangers are. I've been annoyed that thus far I've done all my treatments in-patient in the hospital. Having roommates would normally annoy me and any other normal person, but I've been so lucky to meet the nicest people in the hospital. Complaining about cancer and sharing treatment horror stories I think forms a bond. The hospital staff is so friendly, including the meal chick, the techs, the nurses, the admin staff.
If it wasn't for cancer I wouldn't know how strong my support network is. I wouldn't know how loved I am. It's really a gift on most days and I know I'm a very very lucky girl. Even if there aren't pain meds strong enough to make me feel better, I'm still so full of love that today that the pain didn't matter.
P.S. I love you mom. You're my bestie.
Monday, November 14, 2011
Cancer Treatment Centers of America
Just to fill up our cancer calendar (and to make sure we're doing everything possible) my mother and I went to Philly to explore the Cancer Treatment Centers of America (CTCA) a few weeks ago. It was actually an extremely positive experience, especially considering that the commercials had a high cheesy factor.We went to explore the possibility of an ovarian cancer vaccine called ovax for my mom. (Note: my cancer was not evaluated, but discussed some). With every doctors appointment we learn a little bit more about cancer and how to treat it. What we learned in this trip could fill a couple of blog posts, but I'll just cover some of the highlights of CTCA for anyone interested in reading.
The cost of almost everything was covered. The only thing we had to pay for was $75 for the hotel (total for up to 6 days - not per night) at the Radission which was very nice and I thank them for the free champagne from 5:00 to 7:00 daily. Ok back to the cancer center. Travel to and from the hotel was covered. Meals for both my mom and me as the caregiver were covered. Cafeteria was awesome and even had tons of vegan food for my mom to enjoy.
First off, they said that in order to do the vaccine they have to have a sizable tissue sample collected a certain way during surgery. Surgery, however, can't be done for the sake of the vaccine; it has to be medically recommended for the benefit of the patient notwithstanding the clinical ovax trial. Given the latest scan we got today, my mom probably won't be a surgical candidate because she doesn't have enough cancer. (Never thought I would say that phrase "not enough cancer".) Ok but back to the treatment center runnings...
The three day orientation we experienced was a little bit of a cyclone of different meetings with all different kinds of people who work together to treat the patient. It was a very holistic treatment plan. I used to think that "holistic treatment" was code for crunchy granola treatment not approved by western medicine. No offense to my Eugene, Oregon readers. I love crunch granola as much as the next dirty hippie. However, I've come to appreciate that holistic just means they're treating the whole person instead of just the cancer. So, in addition to two oncologists, my mom was also evaluated by a nutritional, a naturopathic (aka herbal supplement guru), a physical therapist, and a pastoral counselor. They also has occupational therapist, massage therapists (for both patient and caregiver!) Reiki therapists, and exercise therapist people.
The idea is to empower the patient to take an active part in their own treatment. Every doctor and therapist can talk to each other and records are integrated. Instead of your oncologist saying "you should get some exercise", they can refer you to an exercise person who has programs and classes. Then your oncologist can check up on you. Speaking of that, note to self: exercise more (and by more I mean at all). One of the ideas that my mom found really interesting was that stress in the body is an impediment to healing. So that needs to be treated just as much as the cancer does. She in particular found the pastoral counseling interesting. I was taking a nap in the car. Sorry. I was in a lot of pain and very tired.
At CTCA, 80 to 90 percent of the patients are from out of state so we weren't alone in that regard. We met A LOT of very friendly people. I think it was a criteria to work there. Overly friendly and bubbly. I was actually relieved when I found a receptionist that rolled her eyes every now and then. Nice to know one of them was human. CTCA also boasts a higher than average success rate. You can actually go to their website and look up the national average survival rate and the CTCA success rate. For those of you looking up colon cancer stats on my behalf, just know that I don't fall into a statistical category because only .9% of people diagnosed with colon cancer are below the age of 34. I was 27 at diagnosis and 29 now. (Median age of colon cancer diagnosis is actually 71 years old - go me for beating that?) Ergo, none of the stats apply to me.
Other highlights from the trip included:
Vanity Update: Only 1 more pound until I reach my wedding goal weight! Totally unrelated to any effort I've made.
The cost of almost everything was covered. The only thing we had to pay for was $75 for the hotel (total for up to 6 days - not per night) at the Radission which was very nice and I thank them for the free champagne from 5:00 to 7:00 daily. Ok back to the cancer center. Travel to and from the hotel was covered. Meals for both my mom and me as the caregiver were covered. Cafeteria was awesome and even had tons of vegan food for my mom to enjoy.
First off, they said that in order to do the vaccine they have to have a sizable tissue sample collected a certain way during surgery. Surgery, however, can't be done for the sake of the vaccine; it has to be medically recommended for the benefit of the patient notwithstanding the clinical ovax trial. Given the latest scan we got today, my mom probably won't be a surgical candidate because she doesn't have enough cancer. (Never thought I would say that phrase "not enough cancer".) Ok but back to the treatment center runnings...
The three day orientation we experienced was a little bit of a cyclone of different meetings with all different kinds of people who work together to treat the patient. It was a very holistic treatment plan. I used to think that "holistic treatment" was code for crunchy granola treatment not approved by western medicine. No offense to my Eugene, Oregon readers. I love crunch granola as much as the next dirty hippie. However, I've come to appreciate that holistic just means they're treating the whole person instead of just the cancer. So, in addition to two oncologists, my mom was also evaluated by a nutritional, a naturopathic (aka herbal supplement guru), a physical therapist, and a pastoral counselor. They also has occupational therapist, massage therapists (for both patient and caregiver!) Reiki therapists, and exercise therapist people.
The idea is to empower the patient to take an active part in their own treatment. Every doctor and therapist can talk to each other and records are integrated. Instead of your oncologist saying "you should get some exercise", they can refer you to an exercise person who has programs and classes. Then your oncologist can check up on you. Speaking of that, note to self: exercise more (and by more I mean at all). One of the ideas that my mom found really interesting was that stress in the body is an impediment to healing. So that needs to be treated just as much as the cancer does. She in particular found the pastoral counseling interesting. I was taking a nap in the car. Sorry. I was in a lot of pain and very tired.
At CTCA, 80 to 90 percent of the patients are from out of state so we weren't alone in that regard. We met A LOT of very friendly people. I think it was a criteria to work there. Overly friendly and bubbly. I was actually relieved when I found a receptionist that rolled her eyes every now and then. Nice to know one of them was human. CTCA also boasts a higher than average success rate. You can actually go to their website and look up the national average survival rate and the CTCA success rate. For those of you looking up colon cancer stats on my behalf, just know that I don't fall into a statistical category because only .9% of people diagnosed with colon cancer are below the age of 34. I was 27 at diagnosis and 29 now. (Median age of colon cancer diagnosis is actually 71 years old - go me for beating that?) Ergo, none of the stats apply to me.
Other highlights from the trip included:
- Seeing my mom's high school bestie Ellen at Cheese Cake Factory
- Registering at Crate and Barrel
- My mom getting a dress for my wedding - She looks beautiful
- And Surprising my cousins in Reading, PA. Much love that they dropped everything within a moments notice to spend time with us :)
Vanity Update: Only 1 more pound until I reach my wedding goal weight! Totally unrelated to any effort I've made.
Saturday, October 29, 2011
Weekend #2 Down for the Count
Second chemo weekend in a row that I can't go out and do the things I want. I used to be a mind over body person... until chemo. I couldn't be more upset that I'm in so much pain that it prevents me from doing what I want.
The cold-enduced neuropathy from the oxaliplatin is debilitating. It's snowing here. (It snowed the first day of my oxaliplatin chemo treatment 3 years ago too). Seriously? Snow? Thanks.
I've done nothing of note to even blog about, unless you count laying on the couch pathetically. Then, yeah, I've done that. I've got nothing else to say. I'm so mad.
The cold-enduced neuropathy from the oxaliplatin is debilitating. It's snowing here. (It snowed the first day of my oxaliplatin chemo treatment 3 years ago too). Seriously? Snow? Thanks.
I've done nothing of note to even blog about, unless you count laying on the couch pathetically. Then, yeah, I've done that. I've got nothing else to say. I'm so mad.
Sunday, October 23, 2011
Smile & Fake it til You Make it
It's been a while since my last update, which I partially blame on my computer dying and partially blame on the excruciating pain I'm in. Chronic pain makes every single thing harder to do. Ok so here's the latest on me:
Chemo #4 was uneventful. A scan taken after chemo #3 showed no change in my lungs between chemo 2 and 3. Bummer.
My computer straight up died on me. Double bummer. However when Jacob and I took it into Best Buy we were told I still had 5 days left on the warranty! (thanks dad!!) So, I get a new hard drive, a new battery and they're going to fix my mouse pad for free! Wohoo! It also means that I'm blogging from my brother's iPad and the spell check is not the greatest. Just deal with it ok?
My fabulously amazing oncologist is retiring. He is hands down the best doctor I've ever been to (and I've been to a lot of MDs) His compassion and accessibility is incomparable. I really trust him which is so important for someone who's giving you toxics on a regular basis.
For the first time in my life, I was in too much pain to do the things I wanted to do. I was in Charlottesville 2 weekends ago and we had a beautiful wedding to go to. I could only make it through the ceremony and had to go back to the hotel room. I can't remember the last time I was this upset. All week I had to cancel meetings with friends and couldn't work much. I'm not the type of person who takes pain laying down, but that's exactly what I had to do this week. Furious and tearful don't begin to describe how I spent my week.
I went to my old colorectal doctors in Charlottesville to get scoped out... literally. Don't worry, I'm not awake for it and have no memories of the procedure. The docs said they couldn't see anything wrong in my digestive track so that I should adjust my pain medication regiment. Good news I guess, but I hate feeling over-medicated. I'm back to a balancing act.
I also met with a specialist at John's Hopkins. Driving to Baltimore with a sore bum was not easy at all. Let's just say there is a reason for the expression "pain in the butt"; it hurts every time I move or breathe. It also hurts to sit for longer than 15 minutes, but I digress. At John's Hopkins I saw a specialist in my genetic disorder familial atanometous polyposis. (Don't goggle search FAP though - you'll get something different). I also met with some genetic counselors. These guys were the ones who originally identified the gene mutation that causes FAP, so now we can do genetic testing for it! They have a database going back 25 years that provides statistics on other complications and risk factors with FAP. Every other complication that I could get is relatively low risk (around 5% for other cancers) and there's screening for everything. The doc said that since I currently don't have other FAP complications that I shouldn't worry. Hurray!
Chemo #5 tomorrow; planned to be inpatient at Fairfax Hospital. I was hoping to do this outpatient but it wasn't in the cards. Maybe next time.
My oncologist is going to change around some of my chemo drugs because of what the KRAS testing showed would be most beneficial. I'm not going to get the drug that causes diarrhea. I will however be getting oxylaplatin - which is the drug I talked about before that causes painful numbness when exposed to the cold. I won't be able to eat or drink anything colder than room temperature. Looks like I have an excuse to wear arm warmers again!!! Overall, I'm not sure which side effect is worse, but I always love change.
Ok so now that we've played ketchup, onto the real subject of today's blog...
I used to think bravery was the absence of fear. A firefighter fearlessly running into a burning building. The more I think about it though, bravery is the exact opposite. It's not the absence of fear. It means to carry on in spite of your fears, despite of the unknown. Brave are the people who fight against bad odds and unknown outcomes. Bravery is the kid who goes to school knowing he's going to be picked on. It's my mom who fights cancer, takes care of me so well, fights for her family - all not kowing what odds she has. It means keeping a positive attitude and keeping a smile on your face even though you're scared. It's Eric sticking with me despite the fact that even standing in pharmacy lines freaks him out. I know my brother and sister are brave. They listen to all my fears and reassuring me - even though they're probably just as scared as I am.
Brave is going to chemo tomorrow, hoping that it's working, knowing that I'm going to feel awful, and smiling and laughing with the nurses. It's continually fighting for the life that I want with the help and support of my family and friends.
"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face."
~ Eleanor Roosevelt
Chemo #4 was uneventful. A scan taken after chemo #3 showed no change in my lungs between chemo 2 and 3. Bummer.
My computer straight up died on me. Double bummer. However when Jacob and I took it into Best Buy we were told I still had 5 days left on the warranty! (thanks dad!!) So, I get a new hard drive, a new battery and they're going to fix my mouse pad for free! Wohoo! It also means that I'm blogging from my brother's iPad and the spell check is not the greatest. Just deal with it ok?
My fabulously amazing oncologist is retiring. He is hands down the best doctor I've ever been to (and I've been to a lot of MDs) His compassion and accessibility is incomparable. I really trust him which is so important for someone who's giving you toxics on a regular basis.
For the first time in my life, I was in too much pain to do the things I wanted to do. I was in Charlottesville 2 weekends ago and we had a beautiful wedding to go to. I could only make it through the ceremony and had to go back to the hotel room. I can't remember the last time I was this upset. All week I had to cancel meetings with friends and couldn't work much. I'm not the type of person who takes pain laying down, but that's exactly what I had to do this week. Furious and tearful don't begin to describe how I spent my week.
I went to my old colorectal doctors in Charlottesville to get scoped out... literally. Don't worry, I'm not awake for it and have no memories of the procedure. The docs said they couldn't see anything wrong in my digestive track so that I should adjust my pain medication regiment. Good news I guess, but I hate feeling over-medicated. I'm back to a balancing act.
I also met with a specialist at John's Hopkins. Driving to Baltimore with a sore bum was not easy at all. Let's just say there is a reason for the expression "pain in the butt"; it hurts every time I move or breathe. It also hurts to sit for longer than 15 minutes, but I digress. At John's Hopkins I saw a specialist in my genetic disorder familial atanometous polyposis. (Don't goggle search FAP though - you'll get something different). I also met with some genetic counselors. These guys were the ones who originally identified the gene mutation that causes FAP, so now we can do genetic testing for it! They have a database going back 25 years that provides statistics on other complications and risk factors with FAP. Every other complication that I could get is relatively low risk (around 5% for other cancers) and there's screening for everything. The doc said that since I currently don't have other FAP complications that I shouldn't worry. Hurray!
Chemo #5 tomorrow; planned to be inpatient at Fairfax Hospital. I was hoping to do this outpatient but it wasn't in the cards. Maybe next time.
My oncologist is going to change around some of my chemo drugs because of what the KRAS testing showed would be most beneficial. I'm not going to get the drug that causes diarrhea. I will however be getting oxylaplatin - which is the drug I talked about before that causes painful numbness when exposed to the cold. I won't be able to eat or drink anything colder than room temperature. Looks like I have an excuse to wear arm warmers again!!! Overall, I'm not sure which side effect is worse, but I always love change.
Ok so now that we've played ketchup, onto the real subject of today's blog...
I used to think bravery was the absence of fear. A firefighter fearlessly running into a burning building. The more I think about it though, bravery is the exact opposite. It's not the absence of fear. It means to carry on in spite of your fears, despite of the unknown. Brave are the people who fight against bad odds and unknown outcomes. Bravery is the kid who goes to school knowing he's going to be picked on. It's my mom who fights cancer, takes care of me so well, fights for her family - all not kowing what odds she has. It means keeping a positive attitude and keeping a smile on your face even though you're scared. It's Eric sticking with me despite the fact that even standing in pharmacy lines freaks him out. I know my brother and sister are brave. They listen to all my fears and reassuring me - even though they're probably just as scared as I am.
Brave is going to chemo tomorrow, hoping that it's working, knowing that I'm going to feel awful, and smiling and laughing with the nurses. It's continually fighting for the life that I want with the help and support of my family and friends.
"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face."
~ Eleanor Roosevelt
Monday, October 10, 2011
Hospitals and Haircuts
Someone very close to me keeps expressing how he hates hospitals. "Hospitals are where people go to die," he says emphatically. Well, I can't help but thinking that he's 100% wrong. I go to the hospital to live. I spend 4 days out every 2 weeks in the hospital. (That's 28.6% of my time for you bankers). There are a lot of people who go to the hospital and get better. In fairness, I had to make a short stop at NYU ER on Saturday for chemo complications. Everything's fine now, but this was the scariest ER I've been in - and normally ER's make me feel better. So I get why hospitals freak this guy out, but people don't walk into a hospital with the expectation of dying! I'm not dying.
At least, I don't think I am!? On that existential level we're all dying right? None of us know how long we have on this earth, but cancer sometimes makes you feel like death could happen sooner than expected. When I panic about potentially dying I have routine: I tear up a little. I debate calling my doctor's cell phone, which he says is only for emergencies. I decide to call my medically savvy sister instead for a pep talk. She's great at these and probably annoyed when I call her and say "I need that I'm not dying speech again". Then I take an ativan, a wonderful anti-anxiety med, if needed. Lastly, I remind myself that I don't feel like I'm dying and I've got a lot of treatment options. I'm tough and a fighter.
Steve Jobs dying hit me and my mom and sister hard. Here this guy had a lot of treatment options and all the money to throw at the problem and he still died young. I think it's all a matter of when they catch the cancer and luck.
Alright I'm splitting this blog in half. First half sad, second half more fun. First half could go on much longer, but I think you guys get the idea that death scares me and my family, but we have ways of coping that involve more than wine. And that most hospitals other than NYU are good and usually help people even if they are dying. Second half of the blog will be more vain, if possible, than the first half:
I cut my hair shorter. I did this last time I was on chemo and my hair stopped falling out as much. Shorter hair means less weight pulling on my head. So far, I've noticed that my hair hasn't been thinning as much. In reality, it was probably thinning the same amount as any other normal healthy girl. The difference is that I'm neurotically monitoring hair loss. I like it short actually and was leaving it long for our wedding in April. I couldn't take 6 months of being neurotic for one day of pictures with long har. I'll rock the short hair instead.
I've also lost a bunch of weight. (Here's where all the women should stop reading for I fear you may hate me after this. Just keep in mind that I have excruciating pain and that will make you feel better). I've lost 10 lbs between January and July before we went to Italy. That was my goal weight for our trip. Hurray for the first time in my life that I kept my New Year's Resolution. I thought that weight loss was due to portion control - in reality it was probably due to cancer. Cancer eats up glucose (blood sugar). That's why unexplained weight loss is a red flag for cancer. So since I started chemo, over the last 3 treatments, I've lost 6 more pounds.
That's a lot. And we worried. I'll bring it up with my doctor. There's lots of options to get my weight up, including protein shakes or steroid pills. It will be taken care of eventually, but I have to vainly admit:
I look damn good at this weight! I fit into my skinny boots again - which have not been wearable for a year. In fairness, the only reason I had skinny boots in the first place was because cancer dropped my weight down to 98lbs. It was sick. Worked my weight back up to healthy.... and then kept going. Cancer is the best diet plan I'd never recommend. I get to eat all the junk food I want and still lose weight. Before I was diagnosed, I had a goal wedding weight in mind and now I'm 3 lbs away from it. Yay! Vanity! Weight loss is the best side effect out of the bunch. It surely beats out nose bleeds, mouth sores and crippling pain.
Lastly, in this super eclectic blog post, I wanted to give a shout out to the people who don't actually kow me, yet still read this - you know the friends of friends. I've heard from multiple people who've passed the blog along that "my friend loved your blog and thinks you're (pick your adjective: hilarious, inspiring, a turd sandwhich)." I appreciate you guys reading too. I'd hope that people would feel like they could comment or ask questions about stuff they don't understand. Writing this blog has been a surprisingly rewarding activity for me. When I feel like I'm in a sea of "to do" lists that I don't want to do, the one life vest is blog posting. (Look I threw in a horrible analogy. Today, I'm a real blogger.) It's a way for me to pay it forward for everyone who's been so nice to me. I'm assuming that most of the readers will have to deal with someone in their life having medical health problems - so the more information I can give now, the better prepared you'll all being going forward. Think of this as cancer 101 and you all get gold stars for reading. Thanks.
At least, I don't think I am!? On that existential level we're all dying right? None of us know how long we have on this earth, but cancer sometimes makes you feel like death could happen sooner than expected. When I panic about potentially dying I have routine: I tear up a little. I debate calling my doctor's cell phone, which he says is only for emergencies. I decide to call my medically savvy sister instead for a pep talk. She's great at these and probably annoyed when I call her and say "I need that I'm not dying speech again". Then I take an ativan, a wonderful anti-anxiety med, if needed. Lastly, I remind myself that I don't feel like I'm dying and I've got a lot of treatment options. I'm tough and a fighter.
Steve Jobs dying hit me and my mom and sister hard. Here this guy had a lot of treatment options and all the money to throw at the problem and he still died young. I think it's all a matter of when they catch the cancer and luck.
Alright I'm splitting this blog in half. First half sad, second half more fun. First half could go on much longer, but I think you guys get the idea that death scares me and my family, but we have ways of coping that involve more than wine. And that most hospitals other than NYU are good and usually help people even if they are dying. Second half of the blog will be more vain, if possible, than the first half:
I cut my hair shorter. I did this last time I was on chemo and my hair stopped falling out as much. Shorter hair means less weight pulling on my head. So far, I've noticed that my hair hasn't been thinning as much. In reality, it was probably thinning the same amount as any other normal healthy girl. The difference is that I'm neurotically monitoring hair loss. I like it short actually and was leaving it long for our wedding in April. I couldn't take 6 months of being neurotic for one day of pictures with long har. I'll rock the short hair instead.
I've also lost a bunch of weight. (Here's where all the women should stop reading for I fear you may hate me after this. Just keep in mind that I have excruciating pain and that will make you feel better). I've lost 10 lbs between January and July before we went to Italy. That was my goal weight for our trip. Hurray for the first time in my life that I kept my New Year's Resolution. I thought that weight loss was due to portion control - in reality it was probably due to cancer. Cancer eats up glucose (blood sugar). That's why unexplained weight loss is a red flag for cancer. So since I started chemo, over the last 3 treatments, I've lost 6 more pounds.
That's a lot. And we worried. I'll bring it up with my doctor. There's lots of options to get my weight up, including protein shakes or steroid pills. It will be taken care of eventually, but I have to vainly admit:
I look damn good at this weight! I fit into my skinny boots again - which have not been wearable for a year. In fairness, the only reason I had skinny boots in the first place was because cancer dropped my weight down to 98lbs. It was sick. Worked my weight back up to healthy.... and then kept going. Cancer is the best diet plan I'd never recommend. I get to eat all the junk food I want and still lose weight. Before I was diagnosed, I had a goal wedding weight in mind and now I'm 3 lbs away from it. Yay! Vanity! Weight loss is the best side effect out of the bunch. It surely beats out nose bleeds, mouth sores and crippling pain.
Lastly, in this super eclectic blog post, I wanted to give a shout out to the people who don't actually kow me, yet still read this - you know the friends of friends. I've heard from multiple people who've passed the blog along that "my friend loved your blog and thinks you're (pick your adjective: hilarious, inspiring, a turd sandwhich)." I appreciate you guys reading too. I'd hope that people would feel like they could comment or ask questions about stuff they don't understand. Writing this blog has been a surprisingly rewarding activity for me. When I feel like I'm in a sea of "to do" lists that I don't want to do, the one life vest is blog posting. (Look I threw in a horrible analogy. Today, I'm a real blogger.) It's a way for me to pay it forward for everyone who's been so nice to me. I'm assuming that most of the readers will have to deal with someone in their life having medical health problems - so the more information I can give now, the better prepared you'll all being going forward. Think of this as cancer 101 and you all get gold stars for reading. Thanks.
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