I know this might seem a little late, but I often entertained myself by coming up with little bits of wisdom that people should know before going for chemo treatments.
I thought I'd share them with you... mostly just because they're kinda funny and not so intuitive :)
1. Ladies, show your cleavage! What? You didn't think my first (and most important) piece of advice would involve showing cleavage? Well, here is why. You see this?
THIS is the location of my port. You'll notice in my current semi-low cut shirt, it is easily accessible. If I were to wear a crew cut T-shirt or turtle neck... it would be VERY difficult for the nurses to access. It involves either destroying the neck of your shirt, or closing the curtain and having you lift up your shirt. The 2nd option isn't that bad (I've done it before) but I think the nurses prefer to simply have easy access. Plus, a closed curtain isn't helpful when people watching... you can see some very, ummmm, interesting people in an infusion room.
Thus, my first piece of advice is to wear something low cut and show off those beautiful ta-tas! Or if you're a little more conservative, just wear a button down :)
2. FOOOOOOOD! Many people think that chemo induces lots of nausea. And therefore would not take any food with them to the chemo room. While the nausea thing USED to hold true (a nurse told me that when he started 15-20 years ago, almost everyone would vomit whilst receiving chemo), this is no longer the case. Now they have awesome anti-nausea meds. And, generally speaking, from the time I got to the hospital to when I left, it was between 4-6 hours total.
So while you probably won't get nauseous, you WILL most likely get hungry. So bring food. Or bring someone that can go get you lunch. OR make sure you have the number to a take out place that delivers to the infusion room (Jimmy John's anyone?). And if you're like me and totally lose your appetite the next day, you want to eat as much as you can in the days prior to having NO appetite. Long story short, make sure to consider how you're going to get fed while spending all that time at the hospital.
3. Bring along some way to amuse yourself. As I stated above, you will be at the hospital for between 4-6 hours. Some of that is in the waiting room, some is waiting to talk to your doctor, and lots is in the actual infusion chair. And, to be 100% honest, sometimes the waiting/infusion rooms are not exactly jovial, happy places. I once listened to a guy loudly complain about every aspect of his life. He made awful jokes about dying (although judging from mobility and whatnot, I'd guess he had months if not years of life left). He complained about the price of gas and groceries and his job and any/everything else. It was just depressing.
And once you start to dread chemo because of stuff like this... it becomes even HARDER to get yourself there.
So figure out a way to find a little zen during your chemo time. If you have a love for crossword puzzles, bring along a book of puzzles. If music relaxes you, be sure to bring your iPod. Like video games? Bring along that Nintendo DS. Just do something so that chemo has some element of "fun" to it. Trust me, it'll help keep your head in a positive place.
4. Bring your blankie. I don't actually have a blankie from childhood. But I did have several beautiful quilts that were made for me after diagnosis. I brought them along to cheer me up with their bright colors and cover myself in prayer (some were prayer quilts). AND they keep you warm too. Infusion rooms are cold. Infusions make you colder. And while both infusion rooms that I've gone to have blankets that are kept in a heater, they're thin and cool off quickly. So bring along something that is thick and warm and will hopefully brighten up an otherwise drab space.
5. Be silly. I know I already said this, but chemo can be depressing. First, you know that you're probably not going to feel so great in the days after treatment. Second, infusion rooms aren't exactly filled with beautiful, young, vibrant people all chatting and having a good time. Third, not all infusion rooms are places filled with sunlight... some are downright dark and gloomy. In short, it's an easy place to hate.
So, if you can, try to be silly. One day, I wore a "Making Cancer my Bitch" t-shirt a friend sent me. I was the belle of the ball! It made the nurses laugh. It made other cancer patients chuckle and several of them asked me where to get one of their own. Just wearing a silly (and only mildly offensive T-shirt) improved the attitudes of at least 6-8 people in that room. And doing that made me happy.
I personally love being silly. It makes me feel lighter inside. So if you have a silly side, try to find a way to let it out. Do your best to turn that icky infusion room into a place that holds a little laughter.
Those are my 5 tips for surviving chemo. If you're a cancer survivor and have any tips/tricks for making it through your regular trips to the infusion room, please add to the list in the comments section!
Now that chemo is over, I'm trying to celebrate the last...
For instance, today should hopefully be the last Crappy Chemo Monday I have. Mondays have traditionally been the day when I can't keep a thought in my head for more than 2 seconds and have a difficult time doing any work. It's like having ADD for a day.
Otherwise known as "shiny object syndrome".
Here's an example of what my Monday thought process looks like:
Me: OK, I'm going to sit down to do some work.
*Opens Windows Explorer to find the file that I need for the work I'm going to do*
Me: Wait... what did I need to do again? OK, think... think... think! Oh yeah, I was going to work on targets.
*start to look for the file I need... about 2 clicks into the "hunt", I'll get an email*
Me: Ooooohhh, look, an email! Lemme read that.
*reads email, it's a company wide email about travel*
Me: OH! I almost forgot I need to book that house for that trip to San Fran with my friends in the fall. I should go look and see what houses are still available.
*opens the website to look at houses. Looks at approximately 1 house*
Me: I wonder what airfare looks like.
*opens up website to look at airfares*
Me: Hmmm... the whole goal of this trip is to run a half marathon... maybe I should research a good half marathon training program.
*googles half marathon training programs*
Me: I wonder if I'll be even recovered from surgery fast enough to DO this thing... *sigh* I wonder what surgery is going to be like. I wonder what my boobs will look like when this whole shenanigan is over.
*opens google and types in "mastectomy results"*
And THAT, my friends, is how I go from doing work on a Monday to looking at pictures of post-mastectomy surgery results (aka boobs) while at work. Don't worry, I usually don't actually look at the boobs. I usually catch myself before I ACTUALLY go down that road with a "GET BACK TO WORK!"
But this is the cycle I go through about once per hour. Start to work and get very easily distracted.
For an entire day.
If this is what real ADD is like, I have NO idea how any one with ADD gets anything done.
My coping mechanism for Mondays was to make Monday my "meeting day". I'd schedule meetings all day. Because when you're talking to a person, you HAVE to focus. Well, you don't HAVE to, but it's darn hard to start googling things when you're not at your computer :)
So here's hoping that this is my last Crappy Chemo Monday! Forever and ever!
If you need me, I'll be googling something random.
In honor of my 6th Taxol treatment (HALFWAY THERE!!!!!!!!) I thought I'd write a blog about some of the awesome side effects. I was going to try to write a funny poem... but I couldn't find anything that rhymed with "butthole" :)
If you think of anything to complete that rhyme, lemme know!
So instead of writing a poem, I'll use another analolgy for side effects. You ever watch drug commercials? And the voice comes on at the end and speed reads through a list of horrible sounding side effects? And you wonder who the heck would risk "anal leakage" just so they can lose a little weight?
Or am I the only one that considers that a head scratcher?
Well I kinda feel like my life is that little blurb at the end of the commercial. Only I generally feel like the side effects are worth taking a drug that could keep cancer at bay and keep me alive for many years to come. If you asked me to go through this for weight loss, I'd tell you to go sell your crazy somewhere else.
So here it is. If you were watching a commercial for chemo meds, the announcer would have to burn through this list of common side effects:
Nausea, vomiting, loss of appetite, temporary alopecia (fancy word for baldness), constipation, diahrea, bruising, tiredness, mouth sores/ulcers, metallic taste in your mouth, heart damage, infertility, loss of period, neuropathy, general aches and pains, vaginal dryness, increased chance of infections, forgetfulness, chronic nosebleeds, and other more serious side effects.
Sounds like a picnic, right? I mean who doesn't enjoy feeling like you just pencil rolled down a hill that had lots of baseball sized rocks on it? (aka "general aches and pains") Or, you know, having crazy poop problems? And that whole forgetfulnes thing... wait... what was I going to say again?
When they tell you about these side effects up front, you think "that doesn't sound THAT bad." And to be totally truthful, I've lived through worse. I've woken up with hangovers that are worse than some of these side effects.
BUT (and this is a big but) a hangover lasts a day, maybe two if you really partied hard.
Chemo lasts for like 3-4 months.
And now that I'm on Taxol, the side effects aren't getting any better, they're becoming more cumulative. Don't get me wrong, A/C wasn't fun. However, things like the nausea and the loss of appetite got better with each infusion. So each infusion seemed to get a little easier.
Taxol is the reverse of that.
Taxol seemed all friendly at first. It was like "nice to meet you. See? I'm all gentle and don't kick your ass like that nasty, old A/C did."
And you think "Taxol, it sure is nice to meet you. I like you much better than A/C."
And then Taxol, being the two faced fiend that it is, turns out to be some sort of voo-doo priestess and you're the new target. Each treatment, Taxol sticks a new giant pin into your little voo-doo doll. And that's kind of how I feel, like a little doll with lots of pins in it.
Because Taxol can cause nerve damage. Hence the neuropathy and general aches and pains.
And by aches and pains, I mean really random sharp pains all over your body.
And by neuropathy, I mean numbness or tingling in the extremeties. Doesn't sound bad, but boy oh boy is it annoying. And can make it difficult to type (another reason for my lack of blogging).
Oh and then there's the chronic nose bleeds. Nothing like having a work conversation with a Kleenex stuffed up your nose. Seriously, that happened once. Luckily the person I was meeting with just took it in stride, but I can't say I'd consider it one of my finer professional moments.
So that's where I am. Halfway done with Taxol and ready for it to be over. I feel like I've gotten the side effects reasonably under control through use of various vitamin supplements and Tylenol. I'm still very positive. I'm still working and enjoying day to day life more than I did on AC.
BUT I'm ready to go back to feeling like me. I'm ready to have this be over and feel like my body is mine again.
So HURRAY for the half way point, but God please let this 2nd half go fast :)
Just wanted to point out that I'm done with AC!!!!!
AC is reportedly the sucky drug cocktail in my treatment plan. And I'm DONE!
I finished my fourth and final AC treatment on Friday. If I had the guts to do it, I'd post a video on here of me doing a happy dance. Instead, I'll leave you to imagine what that looks like. Hint: it involves alot of the popular mid-90s dance moves... like "the sprinkler"! WOOT WOOT!
I'm so happy to have this portion of my treatment done and over with.
So do a happy dance and say a little prayer of thanks that I made it through this with most of my sanity intact :)
So I started chemo last Thursday, 1/27/11. Happy belated birthday to me!
Actually I was very excited to get this show on the road. I think my doctor/nurses/everyone had no idea what to do with me because they kept asking “are you OK? How is your anxiety?”
And I was all, “I’m GREAT! Let’s get this party started!”
Then they’d look at me like I’m nuts (because I am) and I’m fairly certain they made hand signals behind their backs so I couldn't see that translated loosely as “let’s give this chick loads of drugs… this isn’t normal.”
Anywho. Here is how my first Chemo treatment went.
My mom and I got to the hospital around 10:30 for an 11 meeting with Tara (Dr. Yee’s Physician’s Assistant). We leisurely strolled over to the hospital, got ourselves some latte’s and got to the waiting room just in time for our appointment.
I was only expecting to talk to Tara, but Dr. Yee was waiting for us. Too bad for him, his nurse had to get my vitals and ask all those important questions “Are you taking any drugs we should know about? Could you be pregnant?”
That took us about 10 minutes and we laughed because the nurse and my mother seemed to hit it off and used a lot of nursing humor that I totally didn’t get. Then my mother would say “OK, I’m going to behave now…. Who am I kidding, no I won’t.”
And they’d LAUGH.
And I sat there shaking my head, like “is this for real?”
So the nurse eventually left and Dr. Yee and Tara came in. They were both very serious. Like in a “the dog has died and I have to tell you” kind of a way. I assured Dr. Yee that I was perfectly fine and wonderful and happy and this is where I think he wrote orders for lots of anti-anxiety meds… because who claims that they’re not nervous before pumping their body full of chemo drugs?
Then my mother gave him a wind up inch worm.
No. I’m not kidding.
It was this little green inch worm that you could wind up and it’d crawl along. Her comment to go with it was “because I’m sure with your job, you sometimes feel like you’re just inching along, but always remember that you’re getting somewhere.”
And then I think Dr. Yee put some more drugs on my order in hopes I’d sleep through the car ride home with this crazy woman.
I really don’t think anyone knew how to handle us. I mean, I know this sounds awful, but I don’t understand why cancer treatment is so sad. Yes, it sucks to have cancer. It sucks to stand face to face with your own mortality and wonder who will win. But how can you NOT be excited about being handed the weapons that will help you win that battle?
50 years ago, cancer was a death sentence. Now, 75% of people emerge victorious! The battle is hard, it’s exhausting, but every single treatment is just one more step towards life. If the drugs do their job and luck is on your side, you will just have a some scars and hopefully can make up a great story to go with ‘em.
Like “this one time I got into a fight with a bear, and the bear ONLY WANTED MY BOOBS!”
OK, kind of off topic there.
So after meeting with Dr. Yee, Tara walked me through the potential side effects of the chemo. Lack of energy, possible nausea, reddish orange pee for 24 hours after chemo (b/c one of the drugs is red) are all pretty common side effects. All were things I expected.
Then we got a little pager (kind of like when you’re waiting for a table at a restaurant) and we were told that once it went off, head up to the infusion room.
Approximately 3 minutes later, we were getting beeped and off we went, up to the brand spankin new infusion room.
And in my usual awesome fashion, I got a private room. WOOT! WOOT!
I'd say it's kind of like being upgraded to First Class on a plane... only I didn't get a meal or free booze.
Anywho, we met our nice nurse, Pat (boy, not girl) and he's been doing this stuff for like 20 years. I felt I was in good hands.
Then I got hooked up to the IV and begain waiting for my drugs. Since I was a chemo virgin, they had to check, check and triple check all the chemo orders and dosages. Which means I was waiting for quite awhile to start getting drugs.
The first things they give you are the side effect drugs. One of the biggest side effects of chemo that everyone is aware of is nausea. So they give you 2 different drugs to help with this (or at least they gave me 2 drugs). They both affect the absorbtion of some chemical in your body that induces nausea. One blocks absorbtion of it to your stomach and the other blocks the production of it in your brain. At least that's the really dumbed down version they gave me :)
The Ativan (one that blocks something in the brain) also makes you tired. And HOLY GUACAMOLE did that sucker hit me like a freight train. I'm happily sitting there working on my cross word puzzle and suddenly my brain got all fuzzy. I looked at my mother and said "Well I guess I can start using Chemo Brain as an excuse for being dumb now."
My mother's response was something along the lines of "Well I'm not going to believe that one!"
I guess she didn't want me making excuses for why she kicked my butt at puzzles (we were racing).
Later, when she figured out I was seriously fuzzy, she apologized and we laughed that I know where I get my competitive spirit from.
Chemo in total took about 3.5 hours the first time. From what I understand, this time should shorten a little with the future infusions since the orders will be in the system and not just being processed for the first time.
I can say that it's been relatively painless.
Main side effects: very mild nausea, lack of appetite, and being tired.
It's kind of like when you're getting over the flu. You know that feeling when you've been sick and your stomach just isn't ready for real food yet? That's what I mean by mild nausea.
And the appetite is AWOL. I mean totally gone. It's like food and I used to be friends, and then food ticked me off and my body still isn't speaking to it. In fact, my body refuses to even acknowledge that food exists. I didn't think I'd miss having an appetite as much as I do, but MAN this sucks. (Update as of Wednesday, appetite is BACK! YAY!)
The last is the tiredness. Right around 2:30 every day, my body is all "naptime!" and the brain turns off. Which would be cool if I didn't have a job... or a child... or a life in general. So now I am attempting to figure out coping mechanisms for how to work through the period with no brain. Like doing all the hard stuff in the morning and saving all the brainless stuff (as if that actually exists) for post 2pm.
Aside from all the complaining I just did, I truly do feel thankful that chemo is this under control. 10-15 years ago (or less) people were sick to the point of puking during infusions. I just sat there and worked on Sudoku and crossword puzzles. I even ate dinner that night.
Now if they could just come up with a solution for losing your hair... the world would be AWESOME!
So long blog made short, Chemo wasn't as bad as I thought it would be and 6 days later, I'm feeling pretty OK. Actually, with my appetite back and the nausea gone, I feel like I could conquer the world. I'm happy, I'm positive and if I could drink large quantities of coffee, I'm pretty sure I'd even have a pep in my step.
First round of AC conquered, three rounds to go!