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.