- You're going to get more support than you ever dreamed was available to you, and in the most unexpected places. Sometimes you won't get what you expect. Don't sweat that. This isn't just hard on you.
- Surprise! Cancer is going to cultivate your writing career
- You will be used to not having hair in ONE DAY. Please, stop agonizing over losing it.
- Chemo is going to give the cancer much more of a fight than it would give you. Do not to be terrified.
- You're going to look great in a t-shirt RAWR
- You're going to lose your appetite, and weight. Don't get excited. It's going to COME BACK
- You will be able to help others, and will heal through doing so
- Your surgeons will be fantastic, both in skill and bedside manner. So much so that you would miss seeing them when things were going well.
- People won't look at you weird, hardly ever. Stop stressing over it. Those that do just don't expect a bald girl, and those that are more insensitive aren't worthy of your time or explanation.
- Sometimes you’ll deal with doctors that don’t know you, and they might act like they know what you're going through. They don't. They may minimize your pain. Get loud about it.
- Warm blankets are the best. So are the things they put on your legs before surgery for circulation. Yeah baby.
- Radiation will make you cry, but not for long
- The Young Survivors are amazing. That support group will be one of the best things to come out of this, easily
- You will meet people who make a difference in your life, and sometimes you may never even know their name
- Get ready for ONE TAN BOOB
- Nothing is going to be as bad as you make it out in your head. You are going to get through this, and with grace. Be proud.
I realized today that I have never actually done a post about what radiation is like.
My boob is the color of smoked salmon.
It's REALLY REALLY redish-pink.
And just the right one, which makes sense because it's all they're radiating, but totally weird visually.
I have one sunburned boob, and one that could give Casper a run for his money.
I'm only a week and a half away from being done with radiation, and treatment in general. Hallelujah! Like most of the treatment, as it has gone along, it is pretty much completely uneventful.
Except for the salmon-boob.
And <groan> I finally got the first sign of a burn, on my collarbone, because I wasn't slathering my Origins cream on that area. Or my neck. Or back. Which I am told NOW should have been done all along. Had I done that, I think I would have escaped, burn-free.
None of it hurts, the burn or the salmon-boob. You would think it would feel like a sunburn, but nope.
OH BUT WAIT
Radiation has also aggravated lymphedema, a condition where, if you've had, say, 12 lymph nodes removed like me, your body goes "what the hell do I do with fluid? I know! I'll send it to the arm/hand/etc"
So I'm typing this with my hand completely bound in foam and gauze (like a cast) to force the fluid back out of my hand and arm. And it works, as long as you don't mind not being able to do.... pretty much anything. I call it my lobster claw and it is the picture of suckiness.
I have a super-sexy special glove coming that will help in a much less annoying way. If I'm lucky, this will go away eventually. But it may not.
In which case I'll be THE most awesome swollen-handed, fuzzy-headed, salmon-breasted, CANCER-FREE (fingers-crossed) girl you know.
That's my new bad ass tattoo.
I always said I would never get a tattoo, but then cancer came along, and changed everything. Now I have to buy a motorcycle jacket with a pink ribbon on the back.
You see, I'm done with chemo, and in radiation now. And when they do radiation, they're crazy-specific about the areas they hit with it (thank God), and so they actually tattoo you to line you up correctly every time. I actually have four of these.
They also deflated my boob.
They give me good boobs, and then TAKE THEM AWAY.
Had to be done. The left implant was in the way of the line they needed to radiate the right one. It's only down 100 cc's (so not much) and since I walked around most of my life with two different cup sizes, this is really nothing new, but MAN. It pissed me off. I had an extraordinarily hard time with it, and I still can't tell you why, because I didn't care at all about losing my real boobs. I'm over it now though.
I don't like it.
First, I have to go every day (M-F), for six weeks. Cancer is such an inconvenience, really. I also have a hard time adjusting to the fact that I am intentionally putting something in my body that people suffer from once BOMBED (even if the levels are lower). No matter how hard I try to steel myself against it, when I get on the table, the tears come. You can't feel it at all, and chemo didn't cause me this strife (not that I was a fan), so why the emotional turmoil about radiation?
Partly I think that I'm just tired of putting my body through the wringer. But my mom said something the other day that I think may be a large part of it. You go through months worth of chemo, lose your hair, get nasty side effects, are physically and mentally tired, and you get to the end, and it's A CELEBRATION! You are DONE WITH CHEMO! And then in no time flat...Okay, let's poison your body s'more. It's depressing.
I'm through 8 treatments out of 30, and it is getting easier. The radiation techs are awesome. They're as close to a boyfriend as I have, picking me up every day, asking me about my day, seeing me naked. The side effects from the radiation are nothing like chemo. Some fatigue, and burns (for which I lather up with lotions). You don't even get that until about halfway through I'm told.
I'll be fine, and the tears will subside. And by Feb 2, I'll be finished with treatment.
Looking to book a vacation.
When I used to hear the word port, I'd think "wine!"
Now, when I hear the word port, I think "mothrf@&%#er!"
That's because many chemo patients have a port surgically placed around their collarbone for their infusions, like this bad boy here:
and from day one, mine has refused to cooperate.
When you go in for an infusion, they draw back on the syringe once it's in the port for a sign of blood (clear path to the vein).
My port looked at that syringe, and laughed.
The absence of blood led to an abundance of blood thinners. First Heparin. More Heparin. FINE. STRONGER. Coumadin. MORE Coumadin. Still nothing. More time...
After about an additional two and a half hours tacked on to my infusion, it would work, a little.
So you can see why I curse when I hear the word port.
But on my fourth infusion it completely malfunctioned, frustrating everyone, and resulting in a jolly trip to the heart and vascular center for a port-o-gram (which is nothing like a strip-o-gram) for tests.
They brought me back to a chilly room, but gave me one if those warm blankets (one of the few awesome things about being in a hospital). They laid me on a table and cranked it up high under what looked like every man's fantasy of the best flat screen television EVER (but sadly does not get channels).
An x-ray was run over my chest and before they even put in the dye, it was pretty obvious what was wrong. Seeing as how I don't think the port line going into the vein should be bent like a straw.
"Yeah these things sometimes like to go on vacation, get a little lost."
Well, I wish it had asked for the time off. I really couldn't spare it.
Surgery. Again. Zip-a-dee-doo-dah THIS IS NOT WHAT I WANT TO HEAR. The surgical team is a different one than my breast surgeon who put in the original.
Concerns. I have them. Another surgery means: time off work for the procedure, time off for recovery, possible painkillers, and additional scars.
The surgery is 7:30 am on the following Monday morning and over the weekend I email my breast surgeon with my concerns. Because my port didn't work, they used a peripheral IV for my chemo, and I only have 4 more. Can't I do that and save myself the surgery?
I don't hear back until Monday at 10, when she agrees with me and tells me to cancel it. I was in recovery.
Recovery was quick, and the pain killers were short lived.
And that mothrf@&%#ing syringe was full of crimson immediately.
You know how you go into a building that doesn't have an elevator and you think "Dammit". And you walk up seven flights of stairs and get to the top and your lungs are strained and your heart is in your throat? And you think "This blows. Get a damn elevator."?
That's how I feel most of the time now. Even when I'm sitting still.
A few nights ago I started to feel like I had run a marathon (as if) even though I'd only emptied the dishwasher.
Upon laying down, my shortness of breath got progressively worse until it hurt to breathe.
I was SCARED.
I had no other symptoms and no tempature.
There were concerns of pneumonia or possible blood clots in my lungs, so off to the ER I went.
I think I mentioned in my blog that during my last ER visit I had a cute boy physicians assistant? Well this time I was surrounded! However, I was bald-headed, breathing heavy, and in a hospital gown with my butt hanging out of the back. I wasn't doing myself any favors. So I poured on the charm, and they loved me. NATURALLY.
They hooked about ten thousand wires and some monitors to me, and took blood and urine, and a CT scan of my lungs, and then left me in my room where I was subjected to daytime television.
Too many hours later, the verdict was that I have Pancytopenia, a fancy way of saying that the chemo that had better be kicking my cancer's ass has viciously attacked my white and red blood cells and platelets, dropping the counts significantly in just a couple days, leaving me breathless.
It is not uncommon for the kind if chemo I'm having, along with my stage in the chemo process.
So when I sound a bit breathless, I'm not hitting on you. (Well...)
I have a whole new set of rules, and while this really bites big time, basically everyone has to wait on me hand and foot.
FINE BY ME.
1) As 99.9% of you already know, I wrote an article for Women's Lifestyle Magazine. But for the one person left on earth who doesn't know, here is the link.
2) Dudes. I'm having hot flashes.
Did I say hot flashes?
I meant terrible horrible no good very bad hot flashes.
Chemo has forced me into early menopause, perhaps temporarily, maybe permanently (chemo is full of surprises).
Go ahead and make your old lady jokes. I can take it. I'm kicking cancer's ass.
When they told me I may stop getting my period my only reaction was "THIS IS AWESOME" and I didn't give a thought to the things that might come with that.
Anyway, it feels like the flames of hell are licking at my feet.
Sleep is but a mere memory of something I used to do. Between not being able to get to sleep, and waking up, I'm down about three hours a night. When my co-workers come in my office now they're either met with a growl or a blank stare.
There's a product called the Chillow, that cools down your pillow, but my desperate attempt to find one was an epic failure. I searched the store and all the areas I thought were relevant, to no avail. I almost punched out a stockboy. They should have an old lady section with a neon arrow and bright flashy lights.
I've been known to whip off articles of clothing when necessary. The public should be thankful I haven't gone full frontal. Yet.
And since my cancer is estrogen-receptive (meaning that hormone feeds tumors), I can take no hormone therapy to relieve it. TERRIFIC.
So that is my latest dilemma, the newest bump in the road, that may become a permanent pothole.
If you'll excuse me I need to go move into an igloo.
I told a joke at work the other day, that the stress from my job makes my hair fall out.
This is not a " Oh my GOD Reagan is going to talk about her damn hair again" emo-post.
The point of my joke, is that I'm able already to look at my hair loss with my trademark sense of humor.
Except for my leg hair. Those are holding on for dear life, dammit.
War, famine, and Reagan, while bald, having to shave her legs. Yes, I'm pretty sure that's the order of real tragedy.
Completely changing gears on you, I actually thought I would write today about what chemo fatigue feels like. Because chemo fatigue is not like any other kind of tired. It is not like getting sick, or like lack of sleep (though it shares characteristics of both). For me, I've been hit with two kinds. Right after an infusion I have the kind where I sleep around the clock. Know it's going to happen. Out like a light. Do not disturb.
This usually lasts a day or two.
But the other kind is much sneakier! I usually have this kind a few days before the next infusion.
With this kind of fatigue, I'm going about my day performing the usual miracles, and it's like the universe takes its great big hand and slaps my legs out from underneath me "SIDDOWN!" (actually, lay down, and DON'T GET BACK UP).
It's amazing how you go from feeling totally fine, great even, to like a deflated balloon, in a matter of a few seconds. All of the sudden you can't function as a human being. You crumble into bed, defeated.
This is the most frustrating kind of tired, because there's no warning, no planning for it, no predictability, and no telling how long it will last.
But, with the exception of looking like a cue ball, it IS the only chemo side effect I'm dealing with so far.
And I do love naps.
I'm back. ALREADY.
And guess what we're NOT going to talk about? It begins with an "H" and ends with "we're not finishing that word".
Last night, I began as an exercise to cope, to find a peaceful place within myself. As soon as I feel the fear or pain well up, I find that place, and let the calm wash over me and take those feelings out in a wave of serenity. Maybe that's what this was really about all along. Life's way of showing me the resources I have within, beneath the sometimes haggard surface. I haven't gotten to Ghandi-like transendentalism, but I'm doing it my way.
Today, you are going to learn all about the joy that is a chemo infusion!
First I fill out paperwork, MY FAVORITE, asking if I've had all manner of side effects, which are discussed with my oncologist, which for the most part they can't do anything about anyway so what the hell. But my white blood cells are dancing! That news is most excellent. I'm also told that since my first two weeks went well, with the exception of some added fatigue, I have probably experienced the gamut of side effects that I will. Since chemo causes everything from mouth sores to nail loss, it's really too bad you can't see me doing cartwheels right now.
The infusion center has private rooms, which kind of makes it sound like a gentlemen's club, but that's where the similarity ends. I've always ended up in the community room, which I thought would feel creepy, but isn't at all. Just people in chairs that if you chose to ignore the IV bags, look like they're spending time knitting, reading, playing games, or just talking with the person they brought with them.
Now, if you're anything like me, your chemo port will prove difficult at the first infusion, keeping me there not only several hours longer than anticipated, but the staff after hours. So this go-around I settled in to that comfy chair (a recliner!), ready to be there a while. But that little bugger surprised us all as crimson sprung into the syringe and we were on our way!
My nurse looks like while she's not infusing me she's baking cookies and has the sweet demeanor to match.
Chemo "cocktails" vary, as does the schedule. I have a combination of two drugs, Adriamycin and Cytoxan, once every two weeks for four infusions, which will switch over to Taxol once every two weeks for four infusions. 8 infusions total, 4 months long. During the last four infusions, I may start to see some peach fuzz.
Infusion technically starts a hour beforehand with the application of Lidocane to the port which makes it all numb. Didn't feel the needle at all.Then my cookie-baking nurse starts me on the tummy saving anti-nausea drugs, which really work, allowing me to eat ice cream and pizza rolls to my heart's content. Is that a good thing? Note to self - start juicing today.
The first of the chemo drugs is the Adriamycin, which my cookie-baking nurse sits and "pushes" right into my port from a syringe. Nothing else special about it except that it can make you pee!/sweat!!/cry!!! red, but if you're drinking the multitudes if water recommended, that doesn't last long.
The Cytoxan is a plain old boring IV that doesn't make you do anything in any strange colors so who needs it.
Well I suppose I do.
Anyway, it's the last part of the process, and takes about an hour. Naptime. The infusion process itself from beginning to end is not really that long, maybe two hours, but the waiting and consultations rack up the time. So bring a book, iPad, laptop, or pillow. My friends are just crazy enough to want to visit me, bless their hearts.
After today I'm already a quarter of the way done, and can see that pinprick of light that is the end of the chemo tunnel. I'm practically there.
I shouldn't complain REALLY.
After one infusion I've had minimal side effects.
I braced myself as a tropical storm Chemo was about to make landfall, prepared for the worst.
And then the worst failed to happen, and my life returned to boring, which is why I've been neglectful of this blog, so stop yelling (I'm back, aren't I?).
I had some days where it felt like the wind was taken out of my sails, one day of nausea alleviated by anti-nausea pills, and a couple of banging headaches. Nothing I haven't had before, just condensed.
Yesterday afternoon I ran my hand through my hair and was left with an alarming amount in my hand.
It doesn't matter how many times you hear you're going to lose your hair, when that happens it's shocking. Every lost hair after that is a heartbreak. Every stray that shows up in a belt loop, underwear, or on the floor is a devastating loss.
I planned on shaving my head this weekend but fear I might need to move it up. My intention is to donate my hair to Locks of Love, and so I want to keep as much of it as possible.
I know I know I know I know I KNOW it will grow back.
That doesn't make it any easier.
I have a wig I really like.
That doesn't make it any easier.
Tomorrow is another infusion and once I have a second round of chemo, there won't be much, or any, time.
I know once my head is shaved I'll get used to it quickly. I may even feel like a badass G I Jane. But in getting to that point, I'm as delicate as I've ever been, ready to shatter at a moment's notice.
But there is no escape, so I prepare myself for the hardest day yet, and I will try to muster the courage all you people seem to think I have. And try to be thankful that, so far, the chemo has been a walk in the park....