Sunday, December 4, 2011


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.

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.

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.

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:
  • 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 :)
Unrelated, I finally got my computer back from the Geek Squad up and working so hopefully I'll be back to blogging on a more regular basis and everyone can go back to not reading them on a regular basis. New oncologist is good so far. New treatment sucks. Also, I have a PET Scan later this week that will hopefully tell me that they made a horrible mistake, I don't have cancer, and instead have been producing metastatic gold in my lungs that can be harvested to pay off my student loans. Not likely, but here's hoping! I'll let you all know how it goes at any rate.

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.

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

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.

Friday, October 7, 2011

Lesser Known Chemo Side Effects

I should warn you that this isn't a faint of heart blog post. As Eric said slightly awkwardly after reading my last blog post, I'm nothing if not honest. (exact quote "You're more honest than me"). So if somehow my grandmother has figured out how to read my blog, you've been warned Grams.

Eric and I went to the classy establishment that is McSwiggins for trivia night. (We lost, by one point. I'm horrid at trivia). Don't worry mom - I drank ginger ale the whole time. I got a nose bleed at the bar. Embarrassing. No, I didn't pick my nose; it's a chemo side effect. Because Eric didn't know it was a side effect, I figured I'd cover what side effects are common with chemo. I shouldn't just blow up Eric's spot. A lot of people don't know. There was one Darden classmate that I sat next to who clearly disgusted ask why I got nose bleeds. Sorry dude. Not my fault.

As I mentioned in an earlier post, chemo is a low grade poison. As such, it kills immature cells. Cells are immature after they divide. Ergo, rapidly dividing cells (including cancer cells) are killed off by chemo. There are a lot of rapidly dividing cells in your body apparently. Time for a bulleted list because it's late and my back hurts! Rapidly dividing cells and side effects of chemo can include:

  • The lining of my nose -  Chemo causes nose bleeds when the lining gets thin. The other thing that happens is in the cold air, my nose can burn. 
  • Skins cells - Side effect: skin irritation, itching, and dryness
  • Hair follicles - Hair falls out or in my case thins enough for Eric to point out a bald spot on my head. This also includes all hair on your body - leg hair, arm pit hair, eye brows and eye lashes. Just ask my mom. She has none of these.
  • Mouth/Gum cells - mouth sores and gum bleeding can result from chemo. You're also more prone to cavities.
  • Stomach cells - nausea and vomiting result.
  • Intestines  - yep some chemos seriously mess with your digestive track, especially those of us without colons. Constipation and/or diarrhea. 
Super fun times.

There are other side effects that are I could tie back to my immature cell list. Weight loss used to be pretty common with chemo. I learned that almost half of chemo patients actually gain weight on chemo - due in large part to either better nausea drugs or patients being put on steroids.

Educational sidebar! If I was writing a chemo text book. This would be in one of those call out boxes. There's probably a way to do it in a blog, but way beyond on my blogging capability. Chemo is heavily regulated because it's so toxic. It's given based on formulas for my weight and height. I get weighed very often by the doctor. I can usually estimate my weight within a half a pound margin. I've made guessing my weight a game. So far on chemo I've lost 8 pounds. I've only done 3 treatments. It's a little concerning, but at least I'll be able to hit my wedding goal weight without dieting! (I was talking to a friend about my weight loss, she said candidly "am I suppose to say that's awesome or not awesome?" Laughing, I answered "Both." Glad she gets me.) End Sidebar.

Fatigue is another very common symptom for chemo. I don't have as much energy as I used to. My mom, who's one of the busiest people I know, expressed concern to her oncologist once about her fatigue. The doctor said "Oh well, it's no surprise that you're fatigued" My mom responded with "it's a surprise to me!" Awesomely related, one of the best gifts I've gotten so far was a pajamagram! It was a pair of pajama fatigue pants and a shirt that says "Fatigued". Hilarious and it's so comfy. I wear them more than I should. Fatigue though is a really annoying side effect. It's frustrating to not have the energy that I want to have to do all the things that I'd like to do.

I've heard that some chemos, like those for breast cancers, can seriously throw your hormones out of whack and all the associated PMS/menopausal side effects. Luckily, my treatments don't have a big impact there. Although my family would probably argue I'm still an overly emotional child sometimes... they'd be right.

By far the craziest and most unexpected side effect was a cold sensitivity. Thankfully, I'm not on the chemo that causes this for this whole chemo treatment. However, last time it was a problem. Anytime I was in an enviornment that was below 80 degrees my fingers and toes would go painfully numb - and in the winter not uncommon. Pins and needles to the extreme. If I breathed in air that was cold, I could feel my throat closing up. It also meant I couldn't drink anything cold. So for the week of chemo, I was relegated to warm drinks. If you don't like coffee or tea like me, it was a problem. Also, if you don't have a colon like me and were suppose to drink 2 liters of fluid a day like I was, it was also a problem. I drank a bunch of room temperature water, milk, or milk based protein shakes. I used to have to seriously stress "no ice" when I ordered at restaurants - then wait a bit for my drink to warm up.

I used to wear arm warmers to help with the numbness. Eric met me at Darden Bowling, where I would go as an observer with my arm warmers. Needless to say, he thought I was weird. I am, but at least I don't wear arm warmers as frequently now. I still not so secretly love them. Call me a child of the 80's.

What else am I forgetting? I'm sure there's more...

Chemo also can seriously decrease your white blood cell count. They have medication to help. For those of you not raised by a nurse, white blood cells are your immune system. Chemo patients are more susceptible to disease and infection. So far my white blood cell count is...ok. It's something they monitor closely with blood draws every week. If it gets too low, they doctors not allowed to give you chemo. (The only thing more frustrating than getting chemo is not getting chemo. You worry and feel like the cancer may be growing). There's medication that they give for improving white blood cells. Chemo patients are suppose to get mani/pedis because of the risk of infection. I've also been told we shouldn't visit the dentist to get our teeth cleaned - remember you're prone to cavities though and gum bleeding. Nice juxtaposition.

One of my chemos for bone cancer breaks down bones. They give me a medication to improve my bones. Side effect: bone swelling. It's as painful as it sounds. I do have good pain meds though. I'm positive street value of what I have is more than my annual salary. If someone ever steals my purse, they're going to be really happy. Not because I have any money (another side effect of cancer is a draining of the bank account...), but because there's a lot of drugs in there. It makes me slightly nervous walking around New York City.

Insomnia can be a side effect. My mom and I both have this on our off chemo weeks. It's annoying too. At least today, it's giving me the motivation to update yall. Depression is another result of cancer/chemo. I don't know if it's directly related to emotional or physical. It's probably both.

The last weird side effect that I can't prove - yet - is I think I can feel the cancer cells dying. My mom concurs. We could both feel pain where the CT Scans show we have the most cancer. For her, it resulted in what felt like abdomen pain. For me, it's left elbow, left wrist, and right hip pain - which is where some of the larger bone cancer cells are (were). It's not constant and subsides. It would be easy to be frustrated at this pain, but it's nice to tell ourselves that it's the cancer dying. I really honestly believe that is. Call my crazy. Just don't call me before 8am.

Ok so that's my knowledge of chemo and side effects. I will say that for as long as that list is, I feel pretty good very often. Most side effects are treatable with medications. CVS Pharmacy is programed into my phone - and they call me more than I call them. Side effects are the worst during the week of chemo and then subside as the week progresses. Usually on my off week I'm feeling good enough to work and do most of the things I want to do. Nausea is my biggest problem on chemo weeks. By non-chemo week, fatigue is usually my biggest problem. I'm luckily that I'm young and otherwise healthy. It does help with recovery. I'm really not unhappy either. Sure I have bad days, but I'm surrounded by so much love and happy, wonderful people that it's really hard to be unhappy with my life. It could be a lot worse and I could have a lot more complications - both medically, financially, occupationally, etc. I'm really a lucky girl.

And since I think I add thank you's at the bottom of all my blog posts I should dedicate one to amazing fiancee Eric. He's a wonderful person. He's never made me feel bad about being sick. Almost never complains about it. Listens to me be super neurotic - both about cancer and wedding planning. He's my rock in this storm and my best friend. How well he's taking all of this has been by far the most shocking part of being sick... well after the initial shock of being diagnosed with cancer again. I couldn't do this without him. He sends me presents, which I love. He walks slower when I can't keep up. I try to avoid letting it impact what we do, especially when I'm in New York, but it does. When I cry about it, he's comforting. When I'm in pain, he gently rubs my back as I lay in a lump on the bed (honestly one of the most comforting things). Cancer can strain a lot of relationships and make them worse. It's made ours better. He's a good man for stepping up to the challenge. I could spend pages describing how amazing he is. Sufficient to say, I'm so happy to be marrying him so I can spend the rest of my life repaying him.

Also sufficient to say he's annoyed reading about me gushing about him. For all his friends that read this, he's still drinks bourbon on the rock and makes fun of me too.

Wednesday, October 5, 2011

Hair Today, Not Gone Yet!

My hair isn’t falling out. It’s not. I’m paranoid about it though. The doctors said that it could thin. So now I watch it like a hawk. A lot of people are shocked that not all chemo patients’ hair falls out. (Quote from real people “your hair actually looks good!”) If I was being honest - and not modest in the least - I think this is the best it’s ever looked. I spend more time conditioning and taking care of it than I have before. Again, hawk. 

You’d think I’d be happy about this lack of female balding right? Well, it’s a mixed bag of emotions. I’m happy to look normal on most days and hair falling out can be trau-mat-ic. Ask anyone who’s been through it. I can’t imagine how difficult it is for others. There is this small part of me however that was let’s say, “interested” in the idea of my hair falling out. 

I look healthy, which we all know I am not. The insides don’t match the outside. My mom is bald – and totally owns it. She hardly ever wears her wig, but usually dons a chemo cap (if you’ve never seen one, think cotton beanie). My mom is strong and you can see that. People smile at her, go out of their way to open doors for her, and I’ve even seen random strangers come up and ask to hug her. It’s inspiring. Everyone knows how tough she is. 

I guess that’s my problem. I want everyone to think I’m tough and strong. I want strangers to know. I’m on a train right now heading to New York (yay!) and I feel like telling the random dude taking the tickets “You know I have cancer, but I’m still living my life” or “Even though I did chemo last week and have been in crippling pain, I still went work.” If I was bald, they would know. They would know how tough I am - how determined I am to beat this, get married, have kids, and live the rest of my life happy and cancer-free.

In pain, and crying on Monday, I asked Jacob if everyone knows how tough I am. His response, being the pragmatist that he is was “Who cares? We all know you’re tough.” Of course, it helped that Jacob added “Just beat up anyone who doesn’t think you’re tough!” So that’s the answer. I need to be more secure in knowing that I’m strong enough. That should be enough for me. I’m working on it. Most days, I’m pretty self-assured. There are some days though that I wish random strangers would hug me.

 As long as they’re clean and don’t smell like pee.

I watched this show about branding and how you should have a word that defines you. If I had to pick a word for myself to embody, it would be “survivor”. That’s what I want everyone to know about me. That’s I’m a survivor. I think I’ll dress up like one for Halloween somehow. That or a slutty cat. (joke – I would make a horrid cat.)

I should give a hearty thank you to the friends that I cried at for a week when I thought my hair was falling out. I think I threatened to drag Kelly to the salon every day for a week to serve as emotional support if I shave my head. For emotional support, Kelly, my sister, and my PA cousins get an A+ or gold star, whichever they prefer.

Also, if you’re life isn’t full of cancer blogs already, I’d highly recommend reading this one: Rachel is a strong, tough woman I met in the hospital and she’s much better at blogging than one otherwisehealthy person I know. Sometimes, I feel slightly sorry for the random people my mom and I ambush. We are a lot to take. However, Rachel seems to be handling it in stride. I really enjoy reading her blog and thought I would share. She’s inspiring. That’s her branding word I'm giving her. 

Saturday, October 1, 2011

About time for some good news!

So this will be a quick post. Mainly because I just updated yesterday (two days in a row! Take some prolific writer...) and because for those of you on the Dynamic Duo email list you'll get this information in an email shortly.

After a long day of not eating in the hospital waiting for a CT Scan, I finally got some good news on Monday. The scan showed the cancer masses in my lungs shrunk about 30%! My oncologist was quite impressed. There was some confusion, because he thought I had had 2 cycles instead of 2 treatments. (1 cycle = 2 chemo treatments, 2 cycles = 4 chemo treatments). I've only done 2 treatments total and when he realized this he came back in to say again what great progress this was. The were some cancer masses that were previously undefined, because they were so close together. My oncologist said he could see air through them now - a good sign for being in the lungs. The scan also showed that there was no metastasis of cancer to any other organs!

As for the bone cancer, I'm pretty confident it's working as well. Because of the way bone cancer shows up on CT Scans and bone scans, there would be little benefit to doing either. The 'repaired' parts would show up as hot spots and look the same as cancer. However, I'm happy to report I'm having very little bone pain this time around. A much needed relief to the first 2 treatments. Progress!

Lastly, because I'm showing so much improvement with my current treatment course, my oncologist said that I would not be a candidate for NIH. Thank goodness, because I would hate to imagine how upset I would be if all this suffering showed little progress!

So that's all for today. I'm off to find some hearty breakfast because thankfully food tastes good today (small miracles). Happy Saturday!

P.S. If you're not on our "Dynamic Duo" email list for updates on me and my mom and would like to be, please just email me or comment.

Friday, September 30, 2011

It's My Choice

Three years ago when I was diagnosed with cancer, I got very good advice from a Darden student who had survived cancer. The message wasn't terribly deep  actually the simplicity in the message may be what stuck with me. I've carried his thought with me and it's helped me with my battles, cancer related or not. At the time, I don't think I thanked him enough because I was so self-consumed. So this is my thank you and my hope that someone else can learn from his message:

Battling cancer is my choice. It's my choice to go to the hospital and get chemo, to postpone my life for endless doctor's appointments and to fight. When I'm down and out and feel like my life is out of my control, I remind myself: this is my choice. I choose to battle. I choose to get out of bed and live my life to the best of my ability given the energy I have. I choose to laugh still and love. Simple message, but it applies to more then just cancer. You make the best choices for yourself everyday given the options you have - even if it's stuff you don't want to do. It's still your choice.

Ok so on to something lighter: Chemo number 4 went as wonderful as chemo can go! Normally, chemo on Monday means I can't eat until Thursday. However, a recommendation from a family friend to try a new nausea drug saved my behind. Because I can keep food down, my energy was up, digestive system was working, and I was able to hold conversations and be more productive. My weight didn't drop as much - which was really becoming a personal concern. I was able to eat Chipotle for dinner on Wednesday, which is a feat on a normal non-chemo day. I loved it.

So, if you know anyone who's going through chemo, please recommend "Emend" to them. It's 3 pills, one a day. With insurance, my co-pay was $30; without insurance, it would have been $480. It was worth it. Even if it's not someone terrible close to you. It can't hurt to offer a suggestion.

I hope everyone has a happy weekend! I know mine's looking  a lot brighter thanks to my supportive family and friends. Love and hugs :)

Sunday, September 25, 2011

Debunking the C Word

Cancer is a scary word. So is chemotherapy for that matter. My mom and I decided that this fear of words bunk and we shouldn’t be afraid. Here’s how we debunk cancer and chemotherapy so that we’re less scared. Cancer just means abnormal cell growth. That’s it. This abnormal growth of cells keeps growing until your organs can’t function and the cells can spread throughout your body via your lymph node system. However, to cure cancer it’s as simple as knocking back the abnormal cells and stopping them from spreading. 

Cancer is a rapidly dividing cell. After a cell divides, be it cancer or normal cell, it’s weaker than a mature cell. This is where chemotherapy comes to the rescue! Chemotherapy is a low grade poison that kills immature cells. Chemo is personalized for each person and cancer. The side effect though is that chemo can affect other rapidly dividing cells, such as taste buds, all along the digestive track, hair follicles, nose lining and skin cells. Here’s where you get a lot chemo side effects (in order of rapidly dividing cell listed above): loss of tastes, nausea & diarrhea, baldness including eyebrows and eyelashes, nose bleeds, and dry/itchy skin. Chemo also beats down your red and white blood cells; as a result chemo patients are tired because they don’t get as much oxygen from the red blood cells and the immune system is compromised because they lack white blood cells. It may not be sexy (especially the diarrhea part…), but at least when I think about how and why chemo works, I’m a lot less scared. Chemotherapy, after all, is just proven medicine that kills abnormal cell growth (aka cancer). Knowing the science behind my treatment course – even at my layman’s level - makes it a lot less like black magic. 

Sidebar. My mom would never forgive me if I didn’t put her favorite joke in here: since cancer kills the immature cells, that’s how we know my father wouldn’t survive chemotherapy since he’s all immature cells. He’d be brain dead. Har Har Har. That one may cost me the photo booth at my wedding. Worth it!

In my mom’s case, she has very small pockets of cancer left. They’re not responding to chemo just yet. Interestingly, this could mean that they’re not rapidly dividing so the chemo has less of an impact on them because there are few immature cells. My mom’s doctors recommended stopping chemo for a while and monitoring blood levels and doing scans in 2 months. My mom will also be taking a pill each day that hopefully stops cell growth and division. Her doctor estimated this could work for 6 to 12 months, with a chance it would work longer. If nothing else, this gives her body a chance to rebuild and recuperate. I’m still hoping she has her own hair by my wedding (selfish me!).  

In related news, I recently had testing on my cancer cells left over from my surgery in November 2008. Apparently, UVA kept a sample all this time and it’s a good thing too! The test is called a K-RAS testing (not sure on the spelling or what it stands for. Google it if you care!) The KRAS testing shows what chemos my cancer cells respond too. Luckily for me, the cancer responded best to the chemotherapies that I’m already taking. Lucky for my doctor too! We would have had some words. (Kidding.) My cancer cells also responded to other treatments – by “responded to” I mean “died rapidly with”. My wonderful doctor said that I have a lot of options for treatment. My sister called it a good kind of cancer - and here I thought “otherwise healthy” was an oxymoron.  

If you wanted to fire up your positive thoughts, please send them to me at the hospital on Monday through Thursday. Chemo #3 – Wohoo! More cancer cell dying and more violent vomiting. Guess which part I’m more looking forward to?  I’ll also have a CAT scan early Monday to get an update on my progress. I’m nervous, but also pretty positive that this cancer has been knocked back a significant amount.  I spent the weekend feeling pretty good for the most part. Minor pain that was controllable and I had free time that I got to take a 3 hour nap one day. Winning. 

Chin up. Positive attitudes and no more fear of cancer or chemotherapy. It's just semantics anyway. 

Tuesday, September 20, 2011

For your information: Disability

Alright, prepare yourself for one of those odd "more information that hopefully you'll never need to know" blog post. I'm going to discuss disability and how that works. It's good and bad and I don't have it all figured out yet.

I have chemo every other week, for 48 hours. I'm in the hospital Monday through Thursday usually. If everything runs smoothly I could be out on Wednesdays, but that's less likely than me writing a whole blog post without a spelling mistake. Most of the time, I'm also out of commission on Friday of chemo weeks as well. That leaves me with the ability to work every other week. So I have to apply for disability. (Eric laughs every time I say I'm applying for disability and asks if they'll send me a free helmet, which isn't funny in the least but he thinks it is. This from a guy who had to ride the short bus after his hip surgery; you don't see me making fun of him do you?!) Legally, if you apply for disability, your employer has to guarantee your job for 3 months. After that - for me anyway - it's at my manager's discretion.

So, disability works like this from what I can tell. I'm not sure what applies to everyone, but I'll try to explain how it works for my situation. It was hard to figure out. Multiple helplines for multiple companies needed to be called. The company that I work for pays an insurance company to cover their employees in the event that they have to claim disability. It's part of the benefits package with the company. For me specifically, the benefits company is called Unam. Unam will pay for me when I'm on disability. They only pay a portion of my salary however. For the first 6 weeks, Unam will pay at 100% of my salary. After that, they pay at 70%. This varies depending on the policy your company takes out. I'm told is a very good deal by the people at Unam; the woman I spoke to, (technically that I cried at, because I was so worried,) was so so nice and told me that almost no company pays 100%. My benefits, however, will be paid at 1/7th for every day that I'm not working. Bummer there.

Ok, so I had to apply (call) through Unam. They send me a bunch of forms that I send back. These forms include some stuff my doctor has to fill out to prove I've got cancer. They have to have access to parts of my medical record and get my treatment plan. Unam will send me a check (minus taxes) weekly. God only knows what the delays are going to be on this or how complicated my taxes will be next April. Good thing my father-in-law-to-be is a tax guru. (Hi Paul).

There are two kinds of disability I could have taken. The first is continuous disability, which means I just stop working completely. I'm not legally allowed to even log on to my computer if I took that. It's pretty strict and effectively a divorce from the company. I, however, will be taking what's called "intermittent disability" which allows me to work when I feel well enough to do so. I've decided to work for several reasons - in no particular order:
  • I need something to do to keep me occupied
  • I like my coworkers
  • I need the money
  • I like my work...most of the time
  • I need to feel productive

The other reason that I decided to work is that you still have to pay for your benefits, including the all important health insurance. If I was taking continuous disability, my company would send me a bill for my benefits. "Send me a bill" should directly translate to "pay with after tax dollars". If I'm working though, my company has a paycheck to take my benefits out of and I can pay with before tax dollars. Small victory.

The next issue is that I'm only allowed to work 80% on the weeks that I can work. So even though on my non-chemo (aka good) weeks, I could work 40 hours, I'm only legally allowed to work 32 hours. Great. I'm going to debate this one when I call Unam next. I have a feeling the case manager I talked to from Unam  - who was different than the lady I cried at when I applied - didn't know what he was talking about. I'll be talking to them frequently though because I have to call them every Friday to report my hours that I worked. (Note to self: set up Outlook reminder). This, I'm sure, will be an ongoing process with Unam. 'Ongoing process' should be read as 'annoying things added to my to do list' Remember when I talked about that to do list that keeps getting longer with less energy? Yeah that's still there.

So here I am, with more medical bills and less money. It was upsetting, to say the least, when I did the math this morning. However, it's not the end of the world and I'm lucky to have a good job with such an understanding bunch of coworkers. I got to go to work this week and was really excited. It's surprising how much more you like your job and seeing your coworkers if you only have to go in 32 hours every other week.

Congrats if you made it to the end of this long and slightly boring post. You should get a gold star! In lieu of mailing stickers though, I'll reward my readers - all 3 of you - by ending with some positives. Again, in no particular order:
  • So far, I still have hair. It's thinning, but not gone yet.
  • I stopped growing new hair, which means less shaving my legs and armpits. Exciting because chemo patients clot less so shaving nicks are annoying.
  • I think I'll be able to reach my goal wedding weight. Not only do I not have to diet, but I can in fact eat a lot of fatty, yummy food and still lose weight. 
  • I'm thinking I'll be able to go to a UVA football game this weekend with my pseudo brothers, one of which just got back from Afghanistan and I haven't seen in several months.
...and the best news of all, I feel really good tonight! No pain, no aches and no medication hangovers tomorrow. :)

Sunday, September 18, 2011

If I was going to be honest....

If I was going to be honest, sometimes I have really bad days. I realize that I blog when I feel good enough to blog and as a result, a lot of my posts have been positive. For the most part I try to stay positive. You feel better. Really. And it's just nicer to be around. Plus, it's not great to dwell on how bad you feel.

However, sometimes it's really hard to stay up beat. I had a great weekend with my future mother-in-law - who probably learned more about me and my family then she needed to know. It was just tough sometimes. My hip hurt really bad - the right hip, the one with cancer. As a result, I limped all over Charlottesville and as a result of the limping, my other hip hurt the next day. I went to bed at 8:00 each night because I was so tired. I almost threw up in the car ride down (I mentioned that last post I know, but it was so bad it warranted another mention). I had to use my heating pad a lot because of the pain in my arms and hip. Thanks to Jacob, who knew I wanted heated it up for me even when I didn't ask. He's such a good brother. I'm so lucky.

Worst of all, my mom and future mother-in-law (MOG in wedding abbreviations) had to listen to me complain a lot. If I'm complaining a lot, that means I'm also depressed because now I'm focusing on being sick. We had to sit in Panera for an hour after our meeting with the DJ because I was in so much pain and had no energy to move.

I write all this for a couple reasons. One, I wanted to write an honest post about how this weekend went. It was great. I felt great a lot, but I also felt bad some. Two, I think it's important for people to know how chemo really goes. Third, and most importantly, I love when people post encouraging things on my blog and on my facebook wall. I'm so vain I know, but it makes me feel better.

As I write this, I should toast to my cousin Dale, who always writes me nice messages and will probably be the first to comment on this. I get a lot of encouraging messages, but Dale is the best. So here's to Dale who's post always makes me happy. And yes, I remember the bubbles incident and it still makes me queasy.

Friday, September 16, 2011

Gold Star Theory

Some days are hard. Really hard. It's difficult to find the motivation or energy to do much of anything. I'm running on about half a tank of gas and have twice as many things to do. By twice as many things I mean keeping up with my regular life, fighting cancer, doctor's appointments, fighting insurance, trying to update my blog, etc...

So I came up with a new theory of living: celebrating the small achievements. When I get something simple done, be it taking a shower or putting away my laundry, I give myself a proverbial "gold star". Well, to be honest, they've been less proverbial lately and more literally since the purchase of reward stickers. So for instance, today I got stars for showering, packing my stuff up, trying on wedding dresses, surviving the car ride to Charlottesville, and traversing the city to show my future mother-in-law my thus far wedding plans. The hardest star to earn was the one for surviving the car ride - it's sometimes the easiest tasks are the hardest. I thought I was going to boot for 90% of the car ride, but I digress...

Some might call it lowering my expectations, but I prefer to think of it as raising the reward bar. It really surprises me how happy my gold star stickers make me feel. Or when my friends and family agree or suggest I deserve a sticker (mostly my mom, who now gets her own stickers). So gold star for blog posting today. Or at least silver star for trying to be coherent after such a long day.

P.S. I love Charlottesville. Being here feels like home. And special thanks to Laura for coming to DC to do wedding planning. :)

Wednesday, September 14, 2011

Chemo #2 - Quick Update

Blogging from the hospital! This is a new one for me. Still feeling midly nauseus but was able to eat half a grilled cheese and half a brownie. This one hit me harder than the first treatment. I've had all good nurses this time, which makes a huge difference. Slept through most of yesterday. I barely woke up to celebrate my dad's birthday. :(. Don't think he cared that much.

As predicted, Monday was a waste of a day. I got into the hospital at 8:30ish but chemo didn't start until 5:00. Ugh annoying!

I'm hopefully getting out tomorrow around noon and then off to do wedding planning in Charlottesvile for the weekend with my future mother-in-law. Fingers crossed that my mom and I can keep up our strength!

Sunday, September 11, 2011

Why Me?

The day before chemo is always a bad day. It's mainly because I know tomorrow is going to be a waste of a day. I'm scheduled to go in tomorrow at 8am and it'll be all day of sitting around in the hospital/getting poisoned. Fail

I will say that I had my choice of when to go in and a friend in high places who's looking out for me. I'm lucky I know, but that doesn't mean the day before chemo I'm super excited. Overall feeling pretty good today; tomorrow will be a different story.

So why me? Why do I have to sign up for this? What did I do to deserve this? It's not fair and self pity is really easy. My mom reminded me of a thought I had last time half way though my treatment, after several months of self-pity and asking why me.

Why not me? Why would I assume that I'm so privileged that illness won't happen to me? Why shouldn't I be the one sick? I have health insurance, a supportive family, a (very) flexible job with an understanding boss and caring friends. I'm (hopefully) strong enough to get through this. I'm otherwise healthy - ok so that one's an oxymoron, but the point remains I'm lucky. It's not a mistake that that's the second time I've said that in this post. If the universe is really chaotic, it should balance out a little and I should be the one that's sick.

When I'm feeling sorry for myself, instead of lamenting "why me?", I'm trying to ask myself "why not me?" Who would I wish this on if it wasn't me? (hint: the answer is no one.) It's not "why should I have cancer?", it's "why should anyone have cancer?" If anyone has to have cancer and suffer, it should be me.

I'm still not looking forward to tomorrow though.

Thursday, September 8, 2011

What to Say to a Cancer Patient

I feel bad for the people that have to deal with me on a daily basis. I'm a pain in the butt. However, they're my family and they love me.

I feel even worse for the people who don't deal with me on a daily basis. Not in a vain "I'm such a great person" way. I feel sorry for those who don't talk to me on a regular basis because they often don't know what to say or how to treat me. Here's the big secret I've realized: No one has behaved inappropriately or irreparably offended me. No one. Not one person. Surprised? I am. It's due largely in part that I have amazing family and friends - I know no one is a mean person. So even when someone says something odd, I know it's coming from a good place. It's also because there's no wrong way to act. I'll repeat that, because it's important. There is no wrong way to act.

There are three basic buckets of the way people treat me:
  1. Some people are afraid to talk to me and avoid me. That's fine. I'm happy to talk to anyone about any questions they have. However, if I make someone uncomfortable because of my illness, then they can avoid me and I'm not offended. It's just their way of keeping the norm. 
  2. Others talk only about me being sick. That's fine. They ask how I'm feeling, let me complain, ask questions, let me complain more. That works for me. I'm happy to talk about me. It is one of my favorite subjects. (I should say that this is a matter of personal preference. Not everyone is as open about their health issues as I am and for very good reasons. When I went through my first surgery/chemo over 500+ people literally got updates on the function of my large intestines. That was my choice.)
  3. Lastly, there are people who talk to me about anything but being sick. Also ok. I'm happy for those people that treat me like I'm not sick and tell me about their lives. I want to know about other's lives to still feel normal.
There are hybrids - most people are a combination of 2 & 3 and obviously if I sat here I could come up with more archetypes. The point is that there's nothing that offends. I have a lot of people that say "I don't want to bother you too much, but I wanted to know how you were doing." I don't mind calls, text, emails. If I don't respond or answer, I'm busy (obvi). But the calling is always nice.

I had a coworker ask me what he could do to help. Simple question and very kind. The best thing I could come up with to help me that day was "tell me about what's going on in your life". I wanted  to know - and I wanted to talk about something other than being sick. I love my friends that let me do that. They call, ask me how I'm feeling, listen, and then tell me about their crazy wild adventures.

Even if you don't have wild crazy adventures, that's ok too. I'm just happy that you care. :)

On a scheduling note, I'll be doing chemo again on Monday, inpatient in the hospital. I'll hopefully be out of the hospital on Wednesday. This chemo shouldn't be as bad, largely in part because my momma doesn't have chemo this week. I've been feeling pretty bad on most days, but surviving. My mom and I hi-five at the end of each day and recite our mantra "we survived".

Monday, September 5, 2011

First Chemo Recovery: Not Smooth

No apologies. It's been a while since my last blog post. Lots of bad stuff (and some good stuff happened). I promise there will be an uplifting message if you get to the end of this post. At the on-set though, not sure how funny or short I can make this one. Still learning the ropes of this. This may be TLTR.

First, of some basics on chemo for those of you who are reading my blog for education purposes. (I expect this to be almost none of you, but nonetheless...) Chemotherapy is giving via infusion, via IV, via the "chemo port" in my chest. There are premeds, given first, that prevent side effects and reactions to the chemo (read: poison) the nurses will be giving me later. The premeds take usually 30 minutes to an hour depending on what I'm getting. Normally, it's benadryl, some anti-nausea meds, and a steroid. Then chemo infusion usually takes usually 5 hours-ish. I get several poisons: One for prevention of bone destruction, one is for the colon cancer in my lungs, and then one to treat the colon cancer in my bones. Then there's something else that makes this stuff all work together better, but I'm not really sure on the details or how to spell it. 

Mind you, my room is still 85 degrees at this point. I had been asking for 8 hours to get someone up to fix it. I was laying next to the ac blowing heat at 3 in the morning in a pool of my own sweat being willfully drugged. Finally, I lost it. In a tantrum fit for a 4 year old, I had had it. Crying and soaking wet, pushing my IV poll, I wheeled a recliner chair into the hall way, grabbed my phone, my teddy bear, and a sheet from my bed a laid in the hallway. (I found out later that the chair had wheel locks, which were not unlocked when I pulled it into the hall way - whoops). Crying, laying in the hall way alone, the bad nurse told me I couldn't lay in the hallway. I told her I couldn't lay in my room. Her "compromise of a fan" was not adequate. She did have the decency to get me more sleepy comfort drugs and rub my back a bit. Bottom line of the story: 20 minutes later a maintenance man fixed my ac and I was able to go back to bed. 

The next day, Tuesday, was a blur. I tried to sleep as much as possible. I think my father was there for 6 hours total in the morning because he was there every time I woke up. I may have said 5 words total to him. I tried to eat something once. Threw up twice. My favorite pain management nurse came to see me. My second mom and a good friend also came to visit. Always comforting for me (Advice: hospital visit are personal and reserved for good friends. Always call a friend first before popping in. Trust. Otherwise it can be awkward.) 

So here's where the sad/hard stuff starts: Tuesday was also the day that my mom had chemo. Bad planning on our part. We learned that we will need a lot more help on days that we both have chemo and on the days following. I was out of the hospital and feeling worse on Thursday. Pain was excruciating. Medication for pain makes me sick. My mom and I both were too sick to function. We called in a friend. As soon as she showed up to help, my mom fell asleep - one of us on each couch in the living room. I took more meds and applied heat packs. Let's just say, you know it's bad and you're sick when your doctor makes 4 calls to check on you in the course of 5 hours. (I will caveat this and say I have a  very good doctor).

Thursday night, couldn't breath right. You may not know this, but when you feel air bubbling in your chest, it's unnerving to say the least. Midnight, I called my chemo-ed mom from the basement. She's a nurse who teaches stethoscope skills to nurses and lung sounds. She didn't answer. I called again. Then called the house phone. Then cried in pain. Kept calling until she answered and came downstairs. She listened to my lungs, gave me drugs, and came to sleep in the bed with me. I've never felt more relieved. Still having horrid bone pain, nausea, upset stomach, neuropathy, and general ickness. Some hair loss (It's suppose to thin, but I shouldm't be bald. I'll let you know...)

Friday, even worse. Pain, breathing problems, more general sickness. Trip to the doctor. Threatens to put me in the hospital. Did I mention that my mom and I couldn't make it to the doctors by ourselves and we had to call my second mom again to give us a ride? Yeah that.

Friday evening (good stuff) Surprise! My sister shows up from Oregon. I cried. My mom cried. Honestly, I was so drugged up I though I was looking at myself in a mirror. Note: We do not look that much a like. I think it was a gift. I guess it's just something about Lisa, but you just can't feel totally sick around her. She doesn't let you or you don't want to let her down or some combination. Eric showed up that night unplanned, but more expected than Lisa. We had a good weekend. My mom and I still felt awful and did little to add to the common good. I think the most productive thing I did was pick out bridesmaid dresses and turn oxygen into carbon dioxide. I dropped my laptop on my foot, which was not a smart move. It's now bruised and swollen and I'm walking with a limp. My sister also diagnosed my mom with shingles. Another step backward for both of us. 

So here's the uplifting part that I realized at the end of the week long chemo from hell ordeal: We survived. My family rallied. We had guests visit. We ate, still laughed, were sheltered and protected. Added wine or whine when needed. I cried more than I have in a while. (Others did too, but I'll leave their names out to protect the guilty.) And in the end, I still feel bad. I still have pain; my mom is still tired and sick. But we survived and we will keep doing this. Add chemo, family, friends, love and repeat. We lived though this week. We may have worse weeks, we'll hopefully have better ones, but we keep fighting the good fight. Because we're survivors and this is what we do.

(And if I didn't make it clear, there was LOTS of help. I love everyone who carried me through this week. Too many to mention by name but I will say I love my sister, Eric, my parents, my brother for all the mini-tasks I gave him, my coworkers for covering for me, and Kelly for letting me be neurotic on Saturday.)

Monday, August 29, 2011

Surprise Chemo Attack

I spent most of the mini zombie apocalypse (hurricane Irene) curled up on my couch in New York. See picture. Nothing major happened other than the McDonald's closing at 10:30am and not being able to get a sausage biscuit to cure my medication induced hangover.

The teddy bear is from my niece, which she aptly named Honeycomb. If you squeeze it, it says "I love you Aunt Patti. I hope you feel better - Holly. Bye Bye!" Of course transcribing this recording does it no justice. No matter how cute of a voice you imagine it in, it doesn't come close. Apparently, I got the bear because I am "cough-sick" and not "throw-up sick". If I was throw-up sick my four year old niece would have recommended just getting me a card to avoid the threat of me getting sick on the bear. It's such a sweet gift. I know it doesn't look like much, but it might possibly be the most hugable gift I've ever gotten.

I boarded my bus bright and early Monday morning. It was supposed to be a Sunday bus but that was rescheduled. Pain meds and PBJ in hand (and my teddy bear). I got a call from Fairfax Hospital asking why I wasn't checked in yet. Surprise! Chemo today. Bus arrived at 12:30, I was home around 1:30 thanks to DC's ridiculously confusing layout. Made it to the hospital by 2:00 and have been awaiting chemo ever since. It's 9:20 pm and counting. I'll be in the hospital for 3 to 5 days post chemo.

I will say this in bullet format because it's late and I have high hopes that I will be sleeping soon:

1. My room is hot. And not the 'oh this is a little warm' hot. The kind of hot you can't sleep in. I called maintenance.
2. There are good nurses and bad nurses. There are also really good nurses and really bad nurses. It makes a huge difference. Earlier today I had a nice good nurse. It is not the same case for tonight: bad absent nurse, the 'annoyed when I called her nurse'. To rub salt in the wound, my roommate has a different, better nurse.
3. For as much talking as we did about it, my mom and I managed to have chemo on the same day. Planning I'll give us a silver star, but no stars for execution. Thankfully, my brother and father took off work tomorrow and we have very good friends.
4. Bone pain really hurts. I haven't cried since early July about the pain, but I'm close.

Stay tuned. Next blog promises horror tales of side effects and/or the joys of applying for limited disability.

(9:50 and still no chemo meds. It may be a long night. Good thing I've got my bear)

Friday, August 26, 2011

It's Not a Hickey, I Swear!

Two posts in one day. Must be something good right? No. I looked like a total jerk today and had to share.

Around noon, I was pretty exhausted and in a lot of pain. I took my pain meds, but my arms were still hurting. As a side effect, I felt pretty dizzy. However, we still needed groceries for the pending hurricane.You'd think that it's a pending a zombie apocalypse the way the NYC is freaking out.

So I suffer through the crowded grocery story with my arms throbbing. I can hardly figure out what would be good to get in a hurricane. I think I ended up with oatmeal cream pies, cheetos, bread, and peanuts. (Note: they were out of what Eric's recommend Strawberry Poptarts).  I'm in the checkout line, in front of me is a little old lady with a lot of groceries, most of it looks super heavy. I'm pretty sure it was implied that I should help her load the stuff to the counter. My arms were seriously throbbing and I'm trying not to vom from the pain meds. It was all I could do to hold my own stuff. (remember we're in NYC where no one uses a cart.) So she loads all her stuff by herself slowly as I stand there onlooking. She checks out and leaves, giving me a dirty look, as I start loading my stuff onto the conveyor belt.

The old lady behind me, who was getting help from someone stranger behind her, looks at me and says "oh honey, that is a huge hickey on your neck. You should wear a scarf". Apparently, my tape rash and scar on my neck from the chemo port looks like a hickey. (See earlier post on chemo port. Tape gone, rash remaining). I tried to tell little old lady #2 that it was from surgery and show her the lower mark. She still looked disgusted.

Thanks hurricane Irene and cancer for making me look like a self-centered hickey-flaunting jerk.

Needed: A Better Pain Manager

Option A: Take pain meds, feel ok, wake up with hangover - a BAD hangover.
Option B: Don't take meds, wake up in semi-excruciating pain with no hangover.

Given that those are the current options, depending on how I'm feeling, sometimes I take the medication and sometimes I don't. Last night, I took option A. Today, small hangover. Thankfully, Eric made me breakfast before he went to work. :)

There's a problem with mental patients: sometimes they think "sick people take pills. If I take pills, that means I'm sick. If I don't take pills, I'm not sick." Not a recommended course of action because, obviously, the pills help make them less sick. However, it does apply to the otherwise healthy sometimes. Taking medication just reminds me that I'm sick. Yes, I know medication helps me feel less pain. Yes, I know I will feel better if I take them. Yes, most of the time I take my meds and control the pain.

There are times though, that I think I don't feel that bad, so I think don't need to take them. Then the pain gets worse. There are times I take the wrong pain killer for the type of pain I have. (Yes there's different pain meds for different kinds of pain). Then, not infrequently, it happens that I can't take the pain meds I want because the ones I took earlier haven't worn off yet. Or there are times that I don't have the right pills with me. Sometimes it's too much effort to get up and get medication. Or worse yet, I don't want to deal with the side effects, specifically nausea. (If you know me at all, you know I hate feeling nauseous. It causes panic left over from my last go-round with cancer)

So yes, pain management is an issue. Mostly because it's a pain to have to manage pain. Not because my doctors don't prescribe the right stuff, but because sometimes for multiple reasons, I don't follow what they prescribe. The patient is the only one who can manage their own pain, and I need to be a better pain manager.

That's my thought for today
Love from NYC.

P.S. For pain management nurse and for the wannabe pain management nurse who's reading my blog, no yelling. I took my meds this morning too.

Wednesday, August 24, 2011

Chemo Port in a Storm

I should apologize now. This is going to be a more informative blog post than a funny one. On very few occasions I get inspired to be educational. Maybe it's just the screwdrivers I had at happy hour with good friends, but today I'm in one of those moods. I won't take it personal if you stop reading now.

Chemotheraphy shouldn't be given through a regular IV in your arm. It's usually given through a central line or in most patients' cases a "port". I took one dose of chemo through my arm because of timing of when I could get in to get a port surgically inserted versus when I could get in to get chemo. Let me tell you, chemo is a poison and as such, it burns your veins all the way up. I took 4/5th of the chemotherapy through an IV in my left wrist and for weeks I could trace the vein all the way up my arm.

In simple terms, a port is inserted under the skin in the chest as well as a tube that leads pretty close to your heart. That way when the chemo goes in, it goes through a big vein and gets rapid circulation through your body because it instantly gets pumped through the heart. See the diagram that I stole from another site that I think is a pretty good representation. The port itself is about as round as a quarter, and when I was 98 pounds stuck out from my body about half an inch. (I no longer have that problem at current weight....thankfully? ) They can be removed if you no longer have a need for one. Oncologist recommend keeping them up to 3 years after chemo is finished. I waited 6 months to have mine removed.

I had a powerport brand last time. This time I have a different brand, but it works the same way. Ports are nice because unlike IV's in you arm, it's almost a guarantee that the nurse is going to be able to hit it. It hurts less to access, and you can get a lot more fluid through the port than you could through an IV in your arm. It's safer and a less painful way to administer chemo drugs.

Not to ignore the annoying parts of ports. First and foremost, my fiancee thinks they're 'gross' and doesn't want to talk about all the icky details of how they function. No joke, he cringed at the details I mentioned above. Granted, it is a little weird and does annoy me when I wear something strapless.

I'll always have a scar too. I've learned from experience the longer you leave the steri-strips on (see picture below) the less of a scar you'll have. Easier said than done. The steri-strips are so itchy. It's an itchy scab, with glue, then tape over top. And now I'm suppose to not pick at it?! Did I mention that I'm allergic to almost all kinds of tape? yeah I am. That pink area to the right of the tape is from the strip that already fell off.

It's been almost 1.5 weeks with these tape pieces on and I'm super proud that I haven't pulled them off yet. Gold star for me today.  My plan is to take super hot showers and hopefully they'll fall off quickly.

Unrelated to chemo ports or how great my hair looks in this picture: I found out today that I'll have to do a few treatments through my oncologist and see how that affects the cancer before I can be considered for NIH Clinical Trials. The NIH trial I wanted to get into is for when nothing else is working. So the plan for now is 4 to 6 months of chemotherapy and then see if it works. Fingers crossed :)