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 :)

Tuesday, August 23, 2011

Intro to Blogging

If you've never been sick, like seriously sick, you wouldn't know this. One of the most common phrases across the board that I've heard from doctors is "Well you're otherwise healthy, so that's good" or some variation of this - which in their mind is a good thing. I don't have diabetes. I'm not (massively) overweight, no heart problems and I have all my appendages. Otherwise healthy.

But excuse you, this phrase is so odd. You mean other than the genetic disorder that caused me to lose 50 pounds, my colon and a year of my life fighting colon cancer? Yeah otherwise healthy. Or the second time around: other than the history of colon cancer, the complete colectomy, the lung cancer, abnormal liver scan, and bone cancer. Yes, I'm otherwise healthy. Literally, my oncologist used this phrase today when reviewing my pet scan, which was abnormal to say the least. Healthy people do not get PET Scans; otherwise healthy people do.

Makes me wonder about the people they see on a regular basis if I'm "otherwise healthy", but at any rate it gave me a good name for my blog. I want to try to keep a better running diary this time around of my cancer experience. I want my friends and extended family to have a better idea about what it's like day to day for cancer patients. Your life doesn't stop, in fact it gets busier with less energy, but you'll see what I mean eventually. I also want to laugh at how ridiculous everything is, including my treatment, symptoms, cancer in general, healthcare, my family, my friends, my fiancee (who I love) and even my brother's dogs (who I most certainly do not love). I can't promise I'll update everyday. I can't promise it will always be nice or uplifting so read at you own expense. I can't promise that my blog will be spelling corrected, well written or even in complete sentences on some days.

But I will promise that it'll be honest. And if I was going to be honest, I'd admit that I was doing this more for my own therapeutic sake than anything else. Every blog should have that caveat though!