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.)